Most families navigating profound autism have never heard of this. Not because it isn’t important, but because for years, nothing seemed to change.

I want to tell you about a committee that is now motivated to make sure something does.

What Is the IACC? And Why Should You Care?

There is a federal committee called the Interagency Autism Coordinating Committee, or IACC. Its job is to advise the federal government on where autism research dollars go, what services get prioritized, and what the national agenda around autism looks like for the years ahead.

Every few years the IACC publishes a Strategic Plan. That plan shapes what the NIH funds, what the CDC tracks, and what federal agencies treat as urgent. It has real, downstream influence on what services exist, what research gets done, and ultimately what help is available to your family.

I’ll be honest: the IACC’s track record hasn’t always inspired confidence. For years, independent analyses showed research funding flowing primarily into basic biology — genetics, molecular biology — while practical supports, lifespan needs, medical complexity, and the motor planning challenges that affect your child’s entire life remained chronically underfunded and underresearched.

Many families stopped paying attention because nothing seemed to change.

I understand that. And I also want to tell you why this time might be different - because I was in the room when the discussion happened.

I Was There. Here Is What I Watched Unfold.

I spent two days in Washington DC and attended the IACC meeting on the 2026-2028 Strategic Plan. And what happened in that room matters more than anything this committee has done in years.

Before the meeting even began, over 5,000 public comments had been submitted, the highest number in over a decade. Five thousand people - parents, clinicians, advocates, autistic individuals - showed up on paper for this process. That does not happen by accident. That happens because families are paying attention and because they have been waiting a long time to be heard. Now, this process was not without criticism. Many autism organizations were vocal about the fact that the last remaining comments weren’t given to the committee until the day before the meeting. They advocated for more time to ensure that every voice was heard. The IACC had no control over this. This was an National Institute of Health (NIH) issue. Here’s what happened: many of the committee members used AI to review all of the comments that were submitted down to the eleventh hour, and the overwhelming majority of submissions either fully supported the draft or asked for things that were already in it. Less than 2% opposed it outright. A full summary of the data can be found on IACC’s website.

Parents and advocates had the opportunity to stand up and read their letters during the meeting. Many of them had been attending IACC meetings for years. They talked about watching nothing change for a very long time. They talked about hoping, cautiously, that this time might be different.

And then, after much discussion, debate, pushback, and very long hours, the vote happened.

Twenty-six yes. One no. Thirteen abstentions. The entire Strategic Plan passed.

What’s Actually In This Plan. And Why It Matters for Your Child

Let me walk through what this plan actually prioritizes, because the details matter for families like yours.

Profound autism finally has a formal definition. For years, the children most families in this community are raising nonspeaking, needing round-the-clock care, medically complex, unable to be safely left alone have been an afterthought in national autism policy conversations and research. The loudest voices in autism advocacy have often been those who can speak for themselves, which is important and valid, but it’s meant the families carrying the heaviest loads have frequently been invisible in the policy rooms.

This Strategic Plan includes a formal definition of profound autism, built around communication needs and care needs rather than a cognitive score or IQ. This matters enormously.

A previous proposal — from a group called the Lancet Commission — had included an IQ score of 50 or below as part of the definition of profound autism. That’s exactly the kind of metric I have serious problems with. We don’t currently have reliable ways to assess the cognitive capacity of many nonspeaking individuals, especially those with significant motor planning and sensory processing differences. An IQ score obtained through a motor-dependent assessment tells us what a body could perform on demand, not what a mind understands.

The IACC agreed. It specifically recommended removing the IQ component from the definition, basing profound autism instead on communication needs and the level of daily support required.

That’s a meaningful position, and it reflects something I’ve been saying in these newsletters for a long time: our children have been underestimated by tools that were never designed to measure them accurately.

Medical complexity is being taken seriously. If you’ve ever watched your child go through gut pain, chronic constipation, seizures, or sudden changes in self-injury, and had a doctor tell you some version of “that’s just autism,” this will matter to you.

The committee formally recommended that these medical presentations be recognized and treated as distinct medical conditions rather than dismissed as behavioral byproducts of an autism diagnosis, and that Medicaid specifically recognize them as separate from autism itself, which has real implications for what gets covered and treated.

For families I work with, this is significant. A child in chronic gut pain who can’t communicate that pain deserves actual medical investigation, not a behavioral plan that addresses the symptom while the cause goes untouched.

Wandering and safety are being prioritized. Drowning is the leading cause of death for individuals with autism, a statistic that doesn’t get discussed enough. Elopement, a child leaving a safe environment and being unable to navigate back, is a daily reality for families of children with significant motor planning challenges and impulsivity.

The plan formally addresses safety and wandering as the serious, life-or-death issue it is. A week before this meeting, Secretary Kennedy announced the launch of a National Autism Missing and Endangered Person Alert initiative, a new partnership between HHS, the Department of Justice, and FEMA to build a national framework for autism-specific missing-person response. This is a real, tangible step forward.

Motor planning challenges are finally being named. This is the one I’ve been waiting years to see in a federal document.

The motor planning challenges that affect every area of life for children with whole-body apraxia- communication, learning, behavior, daily function, safety- are included in this Strategic Plan as an area warranting research and clinical education.

More research into motor planning in autism. More education for clinicians. More downstream support for families who’ve been trying to explain whole-body apraxia to every new professional they encounter and being met with blank stares.

This isn’t everything. But it’s a genuine step forward.

Regression is being investigated. Many families I work with watched their child change: skills disappeared, language stopped, eye contact faded, and when they told their pediatrician, they were often told to accept it as part of “typical development.”

The Strategic Plan recommends dedicated research into neurodevelopmental regression: the actual mechanism of what happens, why it happens, and what it means for the child experiencing it. It also specifically prioritizes including the children most often excluded from research: nonspeaking children, medically complex children, children in rural areas, and children whose families were diagnosed late.

Improving communication access. The plan calls for giving people immediate, individualized access to communication supports, including text-based methods, without forcing them to wait for stronger trial evidence, while simultaneously funding research to determine which methods work best for which people and building assessment tools that don’t mistake motor limitations for cognitive or linguistic limitations.

Two nonspeaking IACC members, Caden Larson and Elizabeth Bonker, spoke at the meeting about the importance of communication access and awareness of whole-body apraxia. Both were appointed to the committee itself earlier this year. Two nonspeaking individuals speaking, and voting, as members of the body making these recommendations. Watching that happen in a federal policy setting is something I won’t forget.

This isn’t an exhaustive summary of the entire document. Here’s a list of the domains in Part IV and Part V. If you’d like to take a deep dive into the full 336-page document, you can find it on the IACC’s website.

Part IV — Priority Therapeutic Domains (11 total)

1. Neurotransmission, Neural Circuit Function, and Neuropsychopharmacology

2. Immune, Autoimmune, and Inflammatory Biology

3. Folate Metabolism and One-Carbon Biology

4. Gastrointestinal Biology, Microbiome Function, and Nutrition

5. Neurodevelopmental Regression, Functional Trajectory, and Health Stabilization

6. Mitochondrial, Redox, Metabolic Function, and Endocrine Biology

7. Autonomic Dysfunction

8. Sleep and Circadian Regulation

9. Epilepsy and Network Excitability

10. Motor Planning, Praxis, Sensorimotor Integration, and Apraxia

11. Adaptive Trial Design and Repurposed Medications

Part V — Life Course Domains (confirmed so far)

• Domain I: Timely, Equitable, and Technology-Enabled Diagnosis

• Domain II: Special Education, IDEA Implementation

• Domain III: Improving Communication and Access for Nonspeaking and Minimally Speaking Autistic Individuals

• Domain IV: Co-Occurring Mental Health Conditions, Crisis Care, and Suicide Prevention

• Domains V–VI: Not fully confirmed — likely cover safety/wandering/victimization and housing/community living/aging based on surrounding content, but I couldn’t verify exact titles or ordering

• Domain VII: Employment, Workforce Participation, and Workplace Supports Across Functional Profiles

What This Committee Can and Cannot Do

I want to be clear about something the committee chair was also clear about in Washington, because there’s a misconception circulating on social media that isn’t true.

The IACC does not make the plan happen and does not control the funding. Its role is to build the Strategic Plan, advise on how federal research dollars should be prioritized, track progress annually, and hold public meetings so that families, autistic individuals, and researchers have a formal pathway to be heard.

The Strategic Plan is a recommendation to the Secretary of HHS. From there it goes to further review, and then to Congress to determine funding and legislation.

This is the beginning of a process, not the end of one, which is why staying engaged matters.

Navigating the Noise Around This

If you have been following all of this online, you have likely encountered conflicting information about this Strategic Plan.

There are organizations that have framed this document as harmful to autistic people. There are advocacy groups that asked their followers to oppose it. And there are other organizations that claim to support profound autism families while remaining conspicuously quiet or actively undermining the process.

My strong advice: take time to research what’s out there before you form an opinion based on anyone else’s summary of it - including mine.

When you’re a parent of a child with profound autism, when your daily reality includes 24-hour care, medical complexity, communication challenges, and safety concerns, in a system that has historically ignored you, you deserve information that respects your intelligence, not information filtered through an organization’s agenda, whatever that agenda might be.

Do your own research. Form your own view. Then make your voice heard.

What Happens Now

The Strategic Plan passed. It now moves to the Secretary of HHS, then through further federal review, then to Congress for decisions about funding and legislation.

This is not over. In many ways it is just beginning.

What I need from you:

Stay informed. I will keep updating you as this moves forward. The work that happened in Washington was significant. What comes next will determine whether it translates into anything real for families.

Be discerning online. There will be organizations weighing in on this with competing agendas. Apply the same standard to all of them. Figure out who is actually advocating for families like yours and whose interests are actually being centered.

Know that your voice already mattered. Over 5,000 comments. The most in over a decade. That happened because people like you showed up. That is not nothing. That is evidence that when families pay attention and speak up, the process responds.

Your child deserves a federal policy landscape that sees them clearly, that recognizes the complexity of what they live with, that takes their medical needs seriously, and that refuses to write them off based on assessments that were never designed to measure them accurately.

That is what this Strategic Plan is trying to build. And it passed.

Now we make sure it goes somewhere.

What are your thoughts? There have been many voices who have commented, and I would love to hear yours.

I want to provide practical ways to help, as you’re already overwhelmed with everything you’re carrying.

So let’s talk about what actually changes from here.

The Shift That Costs Nothing and Changes Everything

I want to start with the simplest thing. The thing that requires no appointment, no referral, no waitlist, no purchase.

Start talking to your child as if they understand everything.

I know that might feel awkward if it’s not how things have been going. I know it might feel like you’re pretending, especially when the response you get doesn’t match what you’d expect from someone who understood. But stay with me here.

Your child is in the room during every conversation about them. Every therapy session where the therapist narrates their deficits to you while your child sits right there. Every IEP meeting where their limitations are catalogued while they wait. Every phone call you take in the same room about their behavior or their prognosis or their functioning level.

They are taking all of it in.

And they deserve to be spoken to directly. With respect. As the intelligent human being they are.

Explain what is happening before it happens. Tell them where you are going and why. When something is about to change, let them know. When you are talking about something that involves them, include them in it rather than narrating it over their head. Try to avoid asking questions. This can cause added stress because they can’t reliably answer.

This is the beginning of treating your child as who they actually are rather than who the report said they were.

Presume Competence — But Make It Specific

Presuming competence gets talked about a lot. And sometimes it stays at the level of a concept, something people agree with in principle but aren’t quite sure how to translate into a regular day.

So let me make it specific.

Presuming competence means your child gets age-appropriate content. Not materials designed for a much younger child because that is the level the assessment assigned. Materials and conversations and expectations that match how old they actually are.

It means when you explain something to your child, you explain it fully, not a simplified, stripped-down version based on what you think they can handle. You explain it the way you would explain it to anyone else in the room.

It means when a decision is being made about your child’s life, their school placement, their therapy goals, their daily schedule, you find a way to include them in that conversation rather than making it entirely about them without them.

And it means having expectations. Real ones. Not pressure, but the quiet, daily, unwavering belief that your child is capable of more than what they told you. Because that belief shows up in how you interact with them every single day. And your child feels it.

The Communication Piece — This One Matters Enormously

If your child does not currently have a reliable way to show you what they know, this is the most important thing I need you to know.

The communication method your child has access to right now may not be reflecting what is actually inside them.

A child who uses a limited AAC system with pre-selected vocabulary is showing you what their communication system allows them to say, not necessarily what they want to say or what they understand. A child whose speech is scripted or echolalic is showing you the motor patterns their speech system has automated, not a window into the full complexity of their thinking.

Speech is a motor skill. What comes out of your child’s mouth is filtered through the same motor planning challenges I talk about in almost every newsletter.

Which means your child’s spoken output, whether it’s a few words, scripted phrases, or unreliable approximations, is not an accurate measure of their comprehension. It is a measure of what their motor system can currently produce under pressure. Those are two completely different things.

What your child needs is a communication method that works with their motor system rather than demanding something their motor system cannot reliably deliver.

For many children, that means exploring spelled or text-based communication, building the motor skills to point to letters and spell their thoughts, which bypasses the speech motor system entirely and opens access to full, open-ended expression. For others, it means a genuinely robust AAC system with real vocabulary and real support to build the motor patterns to use it.

Whatever the method, your child does not need to first prove their intelligence to deserve access to full communication. The access comes first. What they know becomes visible once they have a reliable way to show it.

When the Doubt Comes Back

Even after reading all of this, even if this has shifted something real in how you see your child, the doubt is going to come back.

It will come back at the next IEP meeting when everyone in the room is operating from the old story. It will come back on a hard day when nothing is working, and the report feels more accurate than it ever has. It will come back when a well-meaning professional says something that sends you straight back to the functioning level on the report.

That is normal. That is what happens when you are trying to hold a new belief against years of a very official-feeling old one.

When it happens, I want you to go back to your moment.

The one where your child surprised you. The one you almost talked yourself out of believing. The one that didn’t fit the report and that you filed away because you didn’t know what to do with it.

That moment was not a fluke. That moment was not wishful thinking. That was your child showing you the truth about who they are, in the only way their body could manage in that particular moment.

Hold onto it. That is what will bring you back.

This Is a Belief, Not a Fact — And Beliefs Can Change

I want to close with what may be the most important thing.

I am not asking you to ignore professional guidance entirely. I am not asking you to pretend the challenges your child faces are not real, because they are real, and they are significant, and navigating them takes everything you have.

What I am asking you to do is separate two things that have been bundled together for too long.

Your child’s motor planning challenges — real.

Your child’s inability to demonstrate knowledge on demand — real.

Your child’s actual intelligence and capacity to understand, learn, and grow — that one is not what the assessment measured. And it is not what the report is qualified to speak to.

What was handed to you was not a fact about your child’s mind. It was a conclusion drawn from watching their body under conditions their body was not equipped to meet.

That is a belief built on flawed evidence. And beliefs can be changed.

You can start today. Talk to your child like they understand you, because they do. Expect more from the people around them. Build the communication method their motor system needs. And refuse, firmly and consistently, to let a report written on the wrong evidence be the final word on who your child is.

Your Action Plan This Week

Step 1: Pick one conversation you would normally have about your child without including them, and include them in it this week. Direct address. Age-appropriate language. Full explanation.

Step 2: Look at the materials and content your child is currently being given in therapy or school. Does it reflect who they actually are, or the functioning level on the report? If it’s the report, start the conversation about raising the bar.

Step 3: If your child’s current communication system is limited, make one inquiry this week into what else might be possible. Spelled communication resources are linked here.

Step 4: Write down your moment, the one where your child showed you something the report didn’t account for. Keep it somewhere you can find it when the doubt comes back. Because it will come back. And that moment is your answer.

Your child has been in there the whole time.

Fully, completely, intelligently in there, understanding more than anyone has given them credit for, trying harder than anyone has acknowledged, and waiting for the people around them to finally catch up to what they already know.

Today is a good day to start catching up.

What has your journey been like? Leave a comment below. Sharing your story will help others realize they are not alone and that other parents experience the same doubts. Keep going. You’ve got this!

Can I be honest with you about something?

That report sitting in your filing cabinet, the one that assigned your child a cognitive level, a functioning age, an intellectual disability label- I want to talk about it. Not to minimize what you went through receiving it, or to dismiss the professionals who wrote it.

But because there is something fundamentally wrong with how that conclusion was reached. And you must know how that happened.

Here’s what I mean.

Every professional who assessed your child walked into that room with a framework. A way of understanding what autism is, what it means for development, and how to measure what a child knows. And that framework has a massive blind spot built into it.

It assumes that what a child’s body can do on demand tells us what a child’s mind understands.

And for your child, that assumption is wrong.

The Thing Nobody Explained at the Appointment

When your child was assessed, nobody sat you down afterward and said: “By the way — everything we just measured required your child to use intentional motor skills on command. And if their motor system doesn’t reliably cooperate with what their brain intends, the results may not be telling us what we think they’re telling us.”

Nobody said that. Because most of the professionals in that room didn’t know it.

So let me explain.

Your child’s brain has to do something remarkable just to respond to a single instruction. It doesn’t just think the answer and transmit it directly to their hand or their mouth. There is an entire movement planning process that has to happen first, a sequence of neurological events that takes a thought and turns it into a physical action.

And in children with profound autism, that process is disrupted.

There are two parts of the brain I want to tell you about, not to overwhelm you with science, but because once you understand what they do, everything you have been watching your child struggle with will suddenly make a different kind of sense.

The Movement Headquarters

Deep in the brain is a structure called the basal ganglia. It is the brain’s movement control center, and it is one of the most important and least discussed pieces of the complex autism puzzle.

Here is what it does:

It gets the body started. When you decide to reach for your coffee cup, the basal ganglia is what fires the starting gun. Without it working properly, initiating movement, any movement, becomes genuinely difficult. Not difficult like it requires effort. Difficult like the signal doesn’t reliably get through.

The basal ganglia also manages competing movements, deciding which motion happens and suppressing the ones that would interfere. And it is responsible for building automatic motor patterns over time, the kind of practiced sequences that eventually become effortless and don’t require conscious effort anymore.

Here’s what this means for your child in practice.

When they can’t start a movement even though you know they’ve done it before, that’s the basal ganglia. When their body seems to do something other than what they intended, that’s the basal ganglia. When they can do something perfectly on Tuesday and can’t access it at all on Thursday, that inconsistency, that maddening unpredictability that makes everyone question whether they’re “really trying,” that is the basal ganglia. Now, it’s not the only thing that is impacted, but it’s one of the main contributors.

And here is the connection that most professionals were never taught: the brain systems that manage movement initiation, regulation, and automaticity are disrupted in complex autism in ways that look very similar to certain movement disorders. The body that won’t start, won’t stop, won’t cooperate on demand — that is neurological, but can look behavioral, or that they are choosing to do or not do something.

The Brain’s Filter - And What Happens When It’s Overwhelmed

The second piece is called the thalamus. Think of it as the brain’s reception desk; almost every piece of sensory information your child receives passes through it first before it goes anywhere else.

The thalamus decides what gets through, what gets amplified, and what gets filtered out. It also plays a significant role in regulating alertness and arousal, your brain’s ability to stay in a focused, available state versus feeling overwhelmed or shut down.

When the thalamus is processing differently, which it is for many children with complex autism, the sensory world lands differently. What feels like a perfectly ordinary room to you might feel genuinely overwhelming to your child’s nervous system. What seems like a simple, quiet testing environment to the assessor might be registering in your child’s brain as a flood of sensory information they are working incredibly hard just to manage.

Now put those two things together.

A brain that struggles to initiate movement on demand.

And a brain that is frequently managing sensory overwhelm at the same time.

Now hand that child a standardized cognitive assessment and ask them to point, match, follow directions, and respond on command.

And then take the results and build a lifelong story about their intelligence.

What Every Assessment Actually Measured

I want to make this make sense.

Every cognitive assessment your child has ever been given required one thing above everything else: a body that cooperates with the brain’s intention on demand.

Point to the picture. Touch the correct shape. Follow the direction. Pick it up. Put it there. Look at the paper.

Every single item on every single test.

Which means every score, every percentile, every functioning level on every report, they were all measuring the same thing.

Motor ability. Not intelligence.

Think about how you are reading this right now. You are understanding every word. Your brain is processing meaning, making connections, responding internally to what I’m saying. And you are not moving at all to demonstrate any of it.

We take it as completely obvious that understanding can happen without movement. We assume it for every person in the room without question.

We have not been assuming it for your child.

When your child couldn’t point to the right answer, the form said: doesn’t know. When their body did something unexpected instead of the requested response, the form said: incorrect. When the movement didn’t initiate within the testing window, the form said: unable.

And from all of those motor failures, which were measuring the body, not the mind, a picture was built of who your child is intellectually. That picture went into a report. The report went into a file. The file followed your child into every classroom and therapy room and IEP meeting that came after.

And none of it was measuring what everyone assumed it was measuring.

The Moment You Already Have

Before we get to Part 2, I want to ask you something.

Has your child ever done something that didn’t fit the report?

Responded to something they weren’t supposed to understand. Showed knowledge the assessment said they couldn’t have. Surprised you in a way that you quietly tucked away, because you didn’t know what to do with it, and the professionals seemed so certain, and one moment didn’t feel like enough to overturn all of that official confidence.

Every parent I work with has that moment. Usually more than one.

And almost every parent did the same thing with it: they wondered briefly, then went back to what the experts said.

What if that moment was the accurate data point, and the report was the thing that had it wrong?

Sit with that until Part 2.

What has your child done that you haven’t talked about? Let others know. I’m sure you aren’t the only one.

When parents come to me and we start talking about intentional movement, the conversation almost always begins in the same place.

My child doesn’t exercise. They resist any kind of structured physical activity. How do I even start?

And my answer is always the same: we start by understanding why movement matters for your child’s brain before we worry about how to make it happen.

Here’s the reality most therapy programs miss entirely: children with profound autism frequently have significant challenges with body awareness and the ability to put their intention into action. It’s not weakness. Not laziness. Not behavioral avoidance of hard things.

A genuine neurological difficulty knowing where their body is in space and then initiating the movement.

Think about what that actually means for a moment. If you don’t have reliable information about where your limbs are, where your center of gravity is, how much force your movement is using, then every intentional physical action becomes a much harder task than it looks from the outside. And dysregulation follows almost automatically, because a body that doesn’t know where it is in space is a body that feels fundamentally unsafe.

This is why intentional movement, specifically the kind that gives the body clear, strong physical information about where it is and what it’s doing, is a neurological necessity.

The category of movement I focus on is called functional movement. Movements that we have to do every day. Pushing. Pulling. Pressing. Lifting. Carrying. These are the movements that send the strongest, clearest signals through the proprioceptive system, the system responsible for body awareness. And they are the movements that, practiced consistently with proper motor coaching, begin to build the intentional movement control that carries over into everything else your child does.

Before We Talk About Equipment, Read This

I want to be very clear about something before we go any further. Below is a list of suggestions for equipment, but….

You do not need to buy anything on this list to start.

A sturdy chair. A step in your hallway. A broomstick. A heavy backpack. Objects you already have in your home can do almost everything the equipment below does, if you understand the movement you’re trying to build and how to coach your child through it.

The equipment makes things easier, more adjustable, and sometimes more engaging. But the equipment is not what builds the motor skill.

The motor coaching is what builds the motor skill.

Which means how you support your child through the movement, how you break it into steps, how you guide each step, how you pace and repeat and adjust, matters more than anything you will ever purchase. Check out my full motor coaching video HERE. Please watch it before you invest in anything else.

With that said, here are the tools I reach for most.

The Five Tools I Recommend Most

A Weighted Medicine Ball

This is the piece of equipment I use most consistently across the widest range of children. A weighted ball provides immediate, clear proprioceptive input the moment your child picks it up, before a single exercise has begun.

The movements that work best are simple and functional: lifting the ball from the floor, pressing it overhead, pushing it against a wall, or slamming it down to the ground. Ball slams in particular are extraordinarily effective for children who need strong sensory input to regulate; the force of the movement, the sound of the impact, the whole-body engagement of the slam all work together to give the nervous system exactly the information it’s been missing.

Start with a weight that is challenging but manageable, enough that your child has to engage their body intentionally to move it.

A Plyo Box

A plyo box is essentially a weighted, stable step, and it opens up a range of functional movements that transfer directly into daily life. Step-ups build the single-leg stability and weight-shifting skills that walking, stair-climbing, and navigating uneven surfaces all require. Box squats build the lower body awareness and control that sitting, standing, and transitioning between positions depend on.

The plyo box also works great for your child to push. Have your child place their hands on the box and push it down a hallway, which provides strong upper body and core proprioceptive input.

If you don’t have a plyo box, a sturdy step or a low, stable surface works for step-ups, a chair works great for squats, and a laundry basket filled with heavier items works to push.

A Weighted Bar

A weighted bar brings the upper body into the picture. Shoulder presses, bicep curls, and overhead movements build the upper body strength and control that so many children with complex autism are missing, and that directly impacts their ability to use their hands and arms intentionally for communication, self-care, and daily tasks.

The weight should be appropriate for your child’s size and current capacity. A broomstick or a long, lightweight dowel rod works as a starting point if you want to begin without any purchase at all.

A Sand Bell

A sand bell is a flexible weight that shifts as your child moves it, similar to a bean bag, but larger. This means it demands more continuous motor adjustment than a fixed weight does. That adjustment is the point. Pushing the sand bell upward is particularly effective for building the shoulder and upper back strength that supports posture, stability, and the kind of whole-body control that intentional movement requires.

Sand bells are also forgiving; they don’t roll away, they don’t bounce unpredictably, and they land softly when dropped, which matters for children who are still building the motor control to handle equipment carefully.

Colored Dots - Visual

These are the least expensive item on this list and one of the most useful. Colored dots placed on the floor give your child a concrete visual target, a place for their foot to land, a spot to step to, a position to move toward. For children whose motor system struggles with initiation and direction, that external visual cue can be the difference between a movement that happens and one that doesn’t.

They also make the movement more engaging. Following a pattern of colored dots feels less like an exercise and more like a purposeful, directed activity, which matters for building the consistent repetition that motor learning requires.

One More Thing Worth Knowing About

I want to mention one additional tool that I use specifically for building hand-eye coordination, and something called bilateral integration, the brain’s ability to coordinate the left and right sides of the body together.

BlazePods: small electronic discs that light up in sequence and ask your child to respond and build skills in a way that is simultaneously challenging and engaging. The visual stimulus, the motor response, the left-right pattern, all of it supports the cross-body coordination that underlies so many of the motor skills we are trying to build. They allow for a lot of flexibility as these discs can be placed on the floor, chair, or even on the wall with suction cups. So many different options!

They are not essential. But if your child responds well to visual stimulation and you are looking for something that builds motor and cognitive challenge simultaneously, they are worth exploring.

The Thing That Matters More Than All of This

Here is what I want you to remember from this newsletter, more than any equipment recommendation.

Movement builds intentional motor control. Intentional motor control supports body awareness. Body awareness supports regulation. Regulation supports communication, learning, behavior, and everything else you are trying to help your child access.

This is not exercise for fitness. This is movement as neurological medicine.

And like any medicine, it only works if it’s administered correctly. Which means motor coaching your child through each step of each movement, not just setting up the equipment and hoping for the best. Breaking the movement down. Guiding each component. Repeating with patience. Building the automatic motor patterns that take effort today and become accessible tomorrow.

The equipment is the container. The motor coaching is the treatment.

Start with what you have. Add tools as it makes sense. Motor coach every movement. And watch what begins to shift, not just in how your child moves, but in how regulated, how available, and how capable they feel in their body every single day.

Have you seen changes with intentional movement in your home? Leave a comment below. Let us know what is working and what is challenging for you.

Today we finish the list.

These last six are the ones that tend to sit heaviest. The ones most parents carry quietly. The ones the system is least equipped to address.

And at the end, I want to tell you the single best piece of advice a parent ever gave me in twenty years of this work. It is not what you would expect.

Reality Five: What Your Child Eats Is Affecting More Than Anyone Has Told You

I have written about this in depth in previous newsletters. The connection between diet, gut inflammation, and the neurological challenges that show up in children with complex autism. The short version: what goes into your child’s body directly affects their brain, their regulation, their sleep, and their behavior in ways that most standard medical care never addresses.

A gut system in chronic distress sends inflammatory signals to the brain. Blood sugar instability creates mood swings and dysregulation that look behavioral but are physiological. Ultra-processed foods, which make up the majority of what most children with complex autism will actually eat, actively deplete the nutrients the brain and nervous system depend on.

I know food is already a battlefield for many families. The picky eating, the limited repertoire, the mealtime stress that makes every dinner feel like a negotiation. I am not here to add to that stress.

What helps: Starting with one thing. One swap. One new food introduced consistently over weeks. Small changes to what your child eats add up to something real over time. And reducing the inflammatory load on a system that is already working overtime matters more than most people in your child’s life are telling you.

Reality Six: The Medical Complexity Is Real. And Most Doctors Aren’t Trained for It

Seizures. Gut pain that never fully resolves. Immune dysregulation. Sleep disorders with no clear explanation. Self-injury that has a physiological root nobody has identified. Chronic inflammation that shows up in behavior before it shows up in any test result.

These are not behavioral presentations with a medical label attached. They are genuine, complex, interconnected medical realities that are significantly more common in individuals with complex autism than in the general population, and that most standard medical appointments are not equipped to address at the level they require.

I have sat with parents who have been telling doctors for years that something physical is wrong with their child, and been sent home with reassurances that didn’t hold up and referrals that led nowhere. Who watched their child suffer through something that looked behavioral and turned out to be medical. Who finally found the right physician and felt the ground shift under everything they thought they understood.

What helps: Finding physicians who specialize in the medical complexity of autism. Who understand the gut-brain connection, the immune system’s role, the physiological roots of behaviors that look neurological or behavioral on the surface. They exist. Finding them takes persistence. And finding them can change the entire picture.

Resources to help you locate those specialists are linked here.

Reality Seven: The Behavior You’re Seeing Is Almost Certainly a Motor Issue

I have said this before, and I will keep saying it, because it is still not in the mainstream conversation, and the cost of that gap is enormous.

When your child freezes instead of responding. When they do the opposite of what you asked. When they could do something perfectly yesterday and cannot do it today. When what looks like defiance or avoidance or cognitive limitation shows up over and over in a child you know is more capable than that.

That is not behavior. That is a motor planning challenge.

Whole-body apraxia, or the disconnection between what the brain intends and what the body can execute, is present in the majority of individuals with complex autism. And it produces behavior that looks, from the outside, exactly like noncompliance.

A child whose body won’t initiate movement looks like a child who won’t try. A child whose motor system produces inconsistency looks like a child who is choosing when to cooperate. A child who cannot inhibit a movement once it has started looks like a child who is out of control.

None of those interpretations are accurate. And all of them lead to responses that don’t help.

When you understand that the challenge is neurological rather than behavioral, everything about how you respond and what you expect from your child’s team changes completely. If you want to go deeper on this, my previous newsletters on whole-body apraxia are the place to start.

Reality Eight: You Cannot Do This Alone. And You Were Never Supposed To

Parenting a child with complex autism was not designed to be a solo endeavor. And yet somehow, for so many families, that is exactly what it becomes.

The friends who quietly drifted when things got complicated. The family members who love you but cannot hold the complexity of what you’re navigating. The professionals who rotate in and out. The parent communities that are helpful sometimes and exhausting other times. The specific, particular isolation of doing something that most of the world does not understand and cannot fully see.

Parents describe it to me as a loneliness that exists even when they are surrounded by people. Because being around people who don’t understand is not the same as being known.

What helps: Finding your people. Not people who have all the answers, people who genuinely understand the question. Who do not need the hard parts explained or defended. Who will sit with you in the reality of this without rushing to fix it or minimize it.

Community is not a bonus. It is a clinical necessity for sustainable parenting. I am working on something in this space that I will be sharing very soon. Stay close.

Reality Nine: The Fear About the Future Is Real. And It Deserves to Be Taken Seriously

Most parents I work with carry a fear they rarely say out loud. Not because it isn’t constantly present, but because saying it makes it feel more real, and real is already a lot to hold.

What happens to my child when I am not here anymore?

I am not going to minimize that fear. It is legitimate. It is one of the most important questions any parent of a child with complex autism will ever face. And it deserves to be planned for, talked about openly, and taken seriously by everyone in your child’s life.

What helps: Facing it directly rather than managing it through avoidance. The parents who navigate this most effectively are not the ones who found a way to stop worrying. They are the ones who turned the fear into a plan, who started the conversations, identified the people, built the structures, and made decisions about their child’s future while they were still here to make them.

Facing the fear does not make it bigger. It makes it something you can actually work with. And starting that process earlier rather than later is one of the most loving things you can do for your child.

Reality Ten: Taking Care of Yourself Is Taking Care of Your Child

I have saved this one for last because it is the one most parents resist most strongly, and the one I believe is the most important.

Self-care in the context of complex autism parenting is not indulgence. It is not something you get to when things settle down. It is the ongoing, non-negotiable maintenance of the person who is holding everything together, and without whom, the whole structure collapses.

Here is the reality: an exhausted parent cannot co-regulate a dysregulated child. Cannot advocate clearly in a room full of professionals. Cannot make good decisions under pressure. Cannot sustain the long haul that complex autism actually requires.

And the long haul is real. This is not a sprint. It is a decades-long commitment that requires a person who is still standing, still regulated, still resourced, still capable of fighting for the child who needs them.

Your longevity is your child’s greatest resource. That is not a metaphor. That is a clinical fact.

What helps is not a self-care program or a weekend retreat or a list of wellness practices. It is one thing per week. Small. Intentional. Something that has nothing to do with your child’s needs or your role as a caregiver. Protected like an appointment. Non-negotiable like a medication.

One thing per week. Start there. Build from there.

The Best Piece of Advice a Parent Ever Gave Me

I promised you this at the beginning: the single best piece of advice a parent shared with me in twenty years of this work.

It came from a mother I had been working with for several years. Her son had complex autism. She had navigated every reality on this list and then some. And one afternoon, when I asked her what she would tell a parent who was just starting out, she paused for a long time.

Then she said:

“Stop waiting for things to get easier. Get better at this instead.”

Not harder on yourself. Not more productive or more optimized. Better. At asking for help, at trusting yourself, at finding your people, at taking care of your body, at letting go of the version of this that was supposed to look different.

Better at being exactly the parent your child already has.

I have thought about that answer often. Because it is not resignation. It is the most practical, most powerful, most honest thing I have ever heard a parent say about this journey.

Things may not get easier. You can absolutely get better at this. And getting better at this, with the right information, the right support, and the right understanding of what your child actually needs, changes outcomes in ways that waiting for easier never will.

Your Action Plan This Week

Step 1: Look back at all ten realities. Circle the one that is costing you the most right now. That is where your energy goes first, not all at once.

Step 2: Identify one person you can ask for help this week. One specific ask to one specific person.

Step 3: If medical complexity is part of your reality and you haven’t yet found a specialist who gets it, make one inquiry this week using the resources linked here. Your child’s body deserves medical care that understands the complexity of autism.

Step 4: Identify your one self-care thing for this week. Write it down. Put it in your calendar.

You are not the only one who feels the weight of this list.

You are not overreacting to any of it.

And the fact that you are here, still learning, still asking questions, still refusing to accept less than your child deserves, tells me everything I need to know about the kind of parent you are.

The hard parts are real. So is everything you are doing in response to them.

Keep going. Your child needs exactly the parent you already are.

Which reality from Part 2 landed hardest for you? Let me know in the comments. You’ve got this! You’re doing an amazing job!

After two decades of working in complex autism, after the graduate degrees, the clinical hours, the research, the certifications, some of the most important things I know about this journey I did not learn in a classroom or a clinic.

I learned them from you.

From parents sitting across from me in sessions, exhausted and finally honest. From the things you said when you felt safe enough to stop “performing” like it’s all okay. From the realities you described that none of my training had prepared me to hear, and that most of my colleagues were still dismissing.

I have been taking notes for twenty years. Today I want to give them back to you.

Because if you have been feeling like the hard parts of this are harder than anyone around you seems to understand, you are not wrong. You’re not overreacting. And you are definitely not alone in it.

These are the ten realities of parenting a child with complex autism that nobody puts in the brochure. Today, the first four.

Reality One: This Is a Different Kind of Exhausted

Not tired-after-a-long-week exhausted. Not new-baby exhausted.

This is a specific, accumulated, lives-in-your-bones exhaustion that doesn’t leave with a good night’s sleep, partly because good nights of sleep have become rare enough that you believe it’s impossible.

Parents describe it to me as being tired of everything simultaneously. Tired of advocating. Tired of explaining. Tired of fighting for things their child deserved to have without a fight. Tired of holding everything together while pretending, for everyone else’s comfort, that it isn’t as hard as it is.

And underneath the tiredness, often, a layer of guilt for being tired at all. Because you love your child. And loving your child is supposed to be enough to keep going.

It is enough. And it is also genuinely exhausting. Both things are true.

What helps is not fixing the exhaustion; you cannot fix exhaustion that is structural. But you can stop pretending it isn’t there. Give yourself the grace of acknowledging what you are carrying without immediately pivoting to what you should be doing better.

The second thing that helps is asking for help. Which sounds simple and is anything but. But the parent who asks for help is not failing. They are making a decision about sustainability, and sustainability is what your child actually needs from you.

Reality Two: Your Journey Belongs to You. And Nobody Else

You have encountered the family whose child made dramatic progress on a specific protocol. The parent online who found the answer that changed everything. The well-meaning relative who keeps forwarding articles.

And you have sat with the quiet exhaustion of a path that doesn’t match anyone else’s. That doesn’t follow the expected arc. That sometimes seems to be moving in a direction nobody has a map for.

Here is what I want you to know: your child’s profile is completely unique. Which means your journey is too.

There is no other family’s story that is a reliable preview of yours. No timeline that applies. No approach that works universally. And measuring your path against someone else’s is one of the most reliable ways to feel like you are failing when you are actually just doing something that has never been done before - raising your child.

What helps: Owning your story with confidence rather than apology. Seeking out experts who speak to your child’s actual profile, not generic autism, not the average of a research sample, but the specific, original, completely-unlike-anyone-else child you are raising. Then trusting what you build together.

Your journey is yours. That is not a limitation. That is the whole point.

Reality Three: You Are the Expert in the Room. Even When the Room Doesn’t Act Like It

This one makes me angry on your behalf. Consistently.

I have watched parents be talked over, dismissed, and subtly undermined by professionals who spent forty minutes with their child and arrived with more certainty than the parent who has spent years. I have watched mothers in particular be made to feel that their knowledge of their own child is bias rather than data, that their instincts are obstacles to be managed rather than information to be taken seriously.

That is gaslighting. And it is not acceptable.

Let me be very direct about something: the professionals in your child’s life are not your superiors. They are consultants. They bring expertise in their specific field. You bring something no credential can replicate: continuous, irreplaceable, deeply specific knowledge of your child built over years of paying closer attention than any assessment ever could.

What helps: Getting clear on this distinction and refusing to let it blur, in the room, in the meeting, in your own head when the self-doubt creeps in after the appointment.

You hire your team to support you and your child. Not to overrule you. Make sure everyone working with your child understands that. Starting with you.

Reality Four: Credentials Are Not the Same as Answers

I say this as someone with credentials: the professional across the table from you does not have all the answers. Sometimes they do not have the right answers. And sometimes they are working from frameworks that were not designed for your child and have not been updated to account for what we now know.

The professional who says “I don’t know” is usually the most trustworthy one in the room. The one who never says it is the one to watch carefully.

I spent years early in my career believing what I had been taught, and getting things wrong because of it. What changed was not just more experience. It was listening to parents who kept telling me something my training hadn’t prepared me to hear. And being willing to update what I believed when the evidence in front of me demanded it.

What helps: Doing your own learning. Not to become your child’s clinician; you are already their parent, which is its own enormous full-time role. But informed enough to ask the right questions, recognize when something doesn’t fit, and push back when recommendations don’t align with what you know.

Seek out professionals who welcome your questions. Who update their thinking when the evidence warrants it. Who treat your expertise in your child as an asset rather than an inconvenience.

Then go with your gut. It has earned that right.

Coming in Part 2

The next six realities are the ones that tend to land the hardest.

We’re going to talk about the medical complexity that most doctors aren’t equipped to address. The motor planning truth that changes how you read your child’s most challenging moments. The isolation that most parents carry without naming. The fear about the future that sits underneath everything. And the self-care reality that is not optional, no matter how many times it has felt like it was.

Until then, I want you to pause on reality three.

Think about the last time a professional made you doubt something you knew to be true about your child. What did you know that they didn’t? That knowledge essential in your child’s care and progress. Don’t let that go.

Which of these first four hit closest to home? Leave a comment below. Sharing will only help other parents realize they are not the only ones in it.

Today I want to get practical. Because of the question that you may be asking since you started reading.

Can MY child do this?

Let me answer that for you.

The Truth

Your child does not need to show that they know how to spell. They do not need to be calm all the time, compliant, or anywhere near neurotypical in their presentation.

What they need is the ability to learn a movement.

And here’s what I know after nearly twenty years of working with children that the system had given up on: the motor system responds to practice. It is not fixed. It is not closed. Given the right teaching, the right support, and enough time, it builds.

I have worked with children who were considered far too dysregulated to attempt spelling. Children whose histories were full of language about what they couldn’t do and would never be able to do. Children whose parents had been told, clearly and repeatedly, to adjust their expectations.

And I have watched those children, with patient, structured, well-supported motor coaching, begin to point. Then point accurately. Then spell.

Then reveal not only their abilities, but their unique personality.

The ceiling you have been given for your child is not a clinical truth. It is the limit of what a movement-dependent system could measure in a body that doesn’t cooperate on demand.

Your child’s thinking was never the problem.

What Gets in the Way, And How to Avoid It

I want to be honest about why this sometimes doesn’t work. Not to discourage you, but to be aware.

1. Expecting communication before the movement is ready.

This is the most common mistake. A family starts; their child misses letters, the understanding of a motor disability isn’t there, and the conclusion is that their child can’t do it.

But pointing accurately to letters is a complex motor skill. It takes time to build. It takes repetition. And it takes patience to stay in the “acquisition” or motor learning phase long enough for it to become reliable before expecting the communication to flow through it.

When your child misses a letter or produces something that doesn’t make sense, that is almost certainly a motor error. Think about how often your own fingers hit the wrong key when you’re typing. Nobody questions your intelligence when that happens. It’s the same thing.

2. Trying it without the right support.

I want to say this as clearly as I can: please do not try to learn this from a YouTube video and attempt it alone at your kitchen table.

I have had parents message me frustrated and defeated after trying on their own. And then I’ve had those same parents find a trained provider, start the process properly, and watch everything change.

What looks simple from the outside - a letterboard and a pencil - is genuinely complex in practice. A trained provider is tuned into your child’s regulation, the quality of their movement, the timing of support, and the right moment to pull back and let your child lead. They are holding the entire process so that your child stays regulated the entire time.

Attempting this without that support doesn’t just make it harder. It can lead families to conclude their child can’t do something that, with the right guidance, they absolutely could.

Trained providers and resources are essential. Please use them. Your child’s spelling journey matters.

3. Fear that has learned to disguise itself as acceptance.

This is the one I think about most.

Some parents reading this have been through more disappointment than I can imagine. They’ve tried things that didn’t work. They’ve hoped and been devastated and hoped again and been devastated again. And somewhere along the way, they built a wall around their expectations, not because they stopped believing in their child, but because they couldn’t survive another loss.

I understand that. Completely.

And I also want to say this gently: that wall may be protecting you. And it may also be the thing standing between your child and a voice they have been trying to find for years.

You do not have to blow it down all at once. But I am asking you to open the door a little. Because that quiet voice, the one that has always said I think they understand more than anyone knows, deserves one more chance.

4. Thinking that having “speech” means communication is covered.

A child who produces words is not necessarily a child who can reliably communicate what they think, feel, need, and know. For many children with complex autism, speech is scripted, automatic, or limited in ways that leave enormous amounts unsaid.

Spelled communication doesn’t replace speech. It opens a door that speech alone hasn’t been able to open, to full sentences, complex thought, and the kind of communication that tells you who your child actually is.

Three Things That Have to Be True For This to Work

After years of working with spellers and their families, I’ve learned that the foundation matters more than anything else. Here is what I consider non-negotiable:

1. You need to truly understand whole-body apraxia, not just the term, but what it means for your child specifically.

When the hard days come, and they will, this understanding is what keeps you from misreading a motor struggle as a cognitive limitation. It keeps you in the game when your brain is telling you to quit. You need it solid before you begin and you need to return to it every time doubt creeps in.

2. You need to be willing to question the story you’ve been given.

Not just about spelled communication, but about your child. The narrative about who they are and what they’re capable of was built by a system that was measuring the wrong things. You are allowed to set it down. Your child deserves for you to try a different starting point.

3. You need a trained provider.

This is the one I will not budge on. Not because you aren’t capable, you clearly are, or you wouldn’t still be here reading this. But because you and your child are both learning at the same time, it is hard. Having someone who can guide both of you, troubleshoot in real time, and help you stay the course when it gets difficult, that is what makes the difference between building something real and walking away too soon.

I have had parents come to me years after trying on their own, saying they wished they had found support sooner. That their child could have had a voice long before now. I don’t want that to be your story.

What I Want You to Carry From This

I have sat with parents who have spent years watching their child move through the world without a way to say I’m hurting or I’m scared or I understood everything you just said or this is what I actually think about that.

And I have sat with those same parents when their child found a way to communicate it for the first time.

I will never get used to that moment. I hope I never do.

You have not been wrong about your child. The system was measuring the wrong things and drawing the wrong conclusions. And spelled communication, built on the right foundation, with the right support, is one of the most powerful ways I know to give your child what they have deserved all along.

Not a workaround. Not a consolation prize.

A voice. Their actual voice. Finally.

Your Action Plan This Week

Step 1: Read about Spellers Method. Come to it with genuine openness, let it do what it needs to do.

Step 2: Find a trained provider in your area and make one inquiry this week. Not someday. This week.

Step 3: Starting today, in every interaction around your child, speak to them directly. Include them in the conversation. Presume they understand everything being said in the room. Because they very likely do.

Your child has been trying to reach you.

Not someday. Not if the right things fall into place.

Right now. In every way their body currently allows.

The question has never been whether they have something to say.

The question is whether we can help them build a reliable enough path to finally say it.

What questions came up as you read this? Comment below. I’d love to hear your story!

Maybe it came from a developmental pediatrician. Maybe a special education teacher. Maybe a report you had to read alone in your car because you couldn’t face it inside the building.

“Your child is functioning at the level of a very young child.”

And you sat with that. You tried to accept it. You told yourself the professionals know things you don’t. You adjusted your expectations, grieved quietly, and kept going, because that’s what you do.

But somewhere underneath all of it, a quieter voice has been saying something different.

I think they understand more than anyone is giving them credit for.

You’ve seen it. In the way they react when you talk to them instead of about them, as if they aren’t in the room. In what they respond to that they aren’t supposed to be able to follow. In those brief moments, easy to dismiss, impossible to forget, where someone unmistakably intelligent looks back at you.

You have been right about your child all along. Today I want to tell you why, and what to do about it.

The Moment That Changed Everything For Me

I want to share something personal.

I spent the early years of my career believing what I had been taught, that nonspeaking individuals with complex autism had significant cognitive limitations. That if a child couldn’t show me what they knew, they probably didn’t know it. I was working hard for my clients. I genuinely cared. And I was still getting it fundamentally wrong.

Then a colleague sent me a video. A nonspeaking young person was pointing to letters on a board, spelling out thoughts, forming ideas, communicating things that had no business existing inside someone the system had completely written off.

I did what I always do. I researched. I found controversy. Professional organizations calling it discredited. Articles calling it harmful.

And then my colleague said something that made me stop completely.

“Dana. Think about it from a motor planning perspective.”

Seven words. And everything shifted.

Because here’s what I suddenly understood: if your child’s brain genuinely struggles to send reliable movement signals to their body, which is exactly what whole-body apraxia is, then of course they can’t point on demand, speak on command, or respond on cue in a testing situation.

It was never about what was inside them. It was about whether their body could cooperate long enough to show it.

That single realization changed my career. And it’s the foundation of everything I want to share with you today.

So What Actually Is Spelled Communication?

At its simplest, spelled communication is exactly what it sounds like: a nonspeaking person learns to point to letters on a board to share their thoughts. Not pictures. Not symbols. Not a predetermined menu of options. Their actual words. Their actual thoughts.

But here’s what most people don’t understand about it, including many professionals:

It’s not a communication program at first. It’s a movement training program.

Before any spelling happens, your child’s body has to learn how to point. Not randomly, accurately, and consistently. And this takes practice and a lot of hard work.

And I want you to really understand what that asks of your child’s body, because it’s more than it sounds.

To hit a single letter on a board, your child has to settle their body enough to focus. Filter out whatever is happening in the sensory environment around them. Get their eyes to the right place. Move their hand with the right amount of force, at the right depth, to the right target. And hold a thought in mind while all of that is happening simultaneously.

For a body with whole-body apraxia, a body where the connection between intention and movement is genuinely unreliable, that is an extraordinary ask.

Which is exactly why, when they get there, what comes through truly blows your mind!

Because it was never a question of intelligence. It was always a question of access.

Why Does This Have So Much Controversy Around It?

I want to be honest with you here, because you will encounter the controversy, and you deserve to understand it.

Spelled communication divides the professional world sharply. There are researchers who raise serious concerns about it. There are major organizations that have taken formal positions against it. If you Google it, you will find strong language calling it discredited and harmful.

Here is what I know from being in this field for nearly twenty years and working directly with spellers and their families:

The majority of the criticism comes from professionals who have never truly learned about whole-body apraxia. When your framework for understanding autism is behavioral, when you assume that what someone can perform is a reliable window into what they understand, then watching someone spell on a board with support looks suspicious. It looks like the supporter must be doing it.

But when you understand how the motor system works, what it means for a brain and body to be genuinely disconnected, and how dramatically that disconnection can improve with targeted motor training, it doesn’t look suspicious at all. It looks like what it is. A person whose body finally learned how to get out of the way.

The other part of the controversy is more uncomfortable to name. If nonspeaking people with complex autism can reliably communicate complex thoughts, if the intelligence was there all along, then some very established, very well-funded approaches to autism treatment have some serious questions to answer. That is not a comfortable position for any field to be in.

I am not asking you to ignore professional opinion. I am asking you to hold this question alongside it:

How many of the people criticizing this have actually had a real conversation with a speller?

In Part 2, I’m going to answer the question I know you’re already asking.

Can my child actually do this?

And I’m going to be honest with you about what gets in the way, not to discourage you, but because I’ve watched families stumble into the same barriers over and over again, and I want something different for you.

Until then, I want you to sit with one thing.

What would change about how you see your child, and how you advocate for them, if their inability to communicate had always been a movement problem rather than a thinking problem?

Just sit with it.

What’s coming up for you as you read this? Comment below. I genuinely want to hear where you are with this.

Why your nervous system state is continuously being read by your child’s. Why children with complex autism are more dependent on co-regulation than neurotypical children, not less. And why your calm is not a soft, optional, zen-adjacent concept but a measurable clinical tool.

Today we put it into practice.

Because understanding why something matters is only useful if it leads somewhere. And you need somewhere to go with this, especially on the days that are already difficult before they’ve begun.

Note: These Are Not Relaxation Tips

I want to be clear about what these three practices are and what they aren’t.

They are not wellness suggestions. They are not things that require you to have extra time, a quiet house, or a nervous system that isn’t already exhausted.

They are physiological tools, grounded in how the autonomic nervous system actually operates, that work precisely because they bypass the thinking brain and speak directly to the body.

Because here’s what most advice misses: when you are in the middle of a crisis, your thinking brain is not fully online. Telling yourself to calm down in that moment is like giving directions to someone who has lost their GPS signal. The cognitive instruction cannot reach the destination.

Your body needs a physical input. Something that speaks the language your nervous system actually understands.

That is what these three practices are.

Practice One: Map Your Warning Signs Before You Need Them

Your body knows you are leaving regulation before your brain does.

There is always a sequence, a specific, personal combination of physical signals, that happens in the seconds before you fully escalate. Jaw tightening. Shoulders rising toward your ears. Breathing shallowing. Voice changing pitch or pace. Hands gripping something harder than necessary.

Most of us have never paid attention to that sequence because we’ve never had a reason to. We only notice we’ve lost regulation once we’re already in the red zone, which is, unfortunately, the hardest place to return from.

This week, pay attention to what your body does in the twenty seconds before you feel yourself losing it.

Not during the meltdown. In the twenty seconds that come before.

That sequence is your personal early warning system. And when you know your signs, when you can feel your jaw starting to tighten or your shoulders beginning to rise, you can intervene in your own nervous system before you’ve fully left the green zone.

Intervening early is dramatically easier than climbing back from the red zone. It is worth whatever it takes to learn your signs.

Practice Two: Build Your Return Route Before You Need It

You will leave regulation. Let’s be real and without judgment.

Every parent of a child with complex autism loses their footing sometimes. Often. The question is never whether you’ll leave the green zone; it’s how quickly you can find your way back.

And the return route cannot be cognitive. Telling yourself to calm down does not work when your nervous system is in threat-response mode. Your body needs a physical input that speaks directly to the parasympathetic system, the part of your nervous system responsible for returning you to safe.

Here are the most evidence-based options:

Extended exhale breathing. Inhale for four counts, exhale for six to eight. The critical detail here is the length of the exhale, not the inhale. A longer exhale directly activates the parasympathetic system. This is not generic deep breathing. The ratio is the mechanism. Practice it now, before you need it.

Deliberate physical softening. Drop your shoulders intentionally. Unclench your hands. Soften the muscles around your eyes and jaw. Slow your movements down, even slightly. Your body’s physical state feeds back to your nervous system in real time. Changing the body changes the signal it sends.

Cold water on your wrists or face when you need something faster. This activates the dive reflex, a physiological response that slows heart rate quickly. It is not elegant, but it works.

Choose two of these. Practice them this week during a calm moment, not a crisis. Your nervous system needs to rehearse a return route before it needs to use one under pressure.

And practice them in front of your child. Because over time, your child will begin to recognize what returning to safe looks like. That recognition, watching the person they depend on find their way back, is itself a form of co-regulation. It teaches something words never could.

Practice Three: Repair Is More Powerful Than Perfection

Here is the thing nobody tells you, and the thing I most want you to take from this newsletter.

You are going to have moments where you were not regulated, and your child felt it. Where the weight of everything showed. Where you escalated when you meant to stay steady. Where you were in survival mode, and it was visible.

Those moments are not failures. They are inevitable. And what you do after them matters more than most people realize.

When you’ve returned to your green zone, go back to your child.

Get calm and be present. No lengthy explanation needed. No processing the moment or talking through what happened. Just your regulated nervous system, next to theirs, communicating in the language their body actually understands: I left, and I came back, and it is safe again.

That pattern, clinicians call it rupture and repair, done consistently over time, builds something extraordinary in your child’s nervous system. It teaches them that dysregulation is survivable. That the person they depend on most can lose their footing and find it again. That safety is not fragile.

You do not need to be a perfectly regulated parent.

You need to be a reliably repairable one. That is the standard that is both achievable and genuinely meaningful. Hold that one instead.

Back to the Mom in My Office

She came back the following session and told me she’d tried the extended exhale breathing during a particularly hard morning.

“It didn’t fix anything,” she said. “But I stayed in the room. I didn’t escalate. And he regulated faster than he usually does.”

She stayed in the room.

That is the whole thing. That is what all of this is asking of you.

Not a transformed nervous system. Not some elevated state of perpetual calm that exists nowhere in real life. Just present and regulated enough. Available enough that your child’s nervous system can reach for yours and find something steady.

Your nervous system is not a switch. It is a practice. And like any practice, it becomes more accessible the more you return to it, in the ordinary moments, in the quiet ones, in the moments that don’t feel significant but are actually where all of it gets built.

The ordinary moments are where the neural pathways form. So that when things get hard, your body can find its way back faster than it could before.

Your Action Plan This Week

Step 1: Map your warning signs. Pay attention to what your body does in the twenty seconds before you escalate. Write it down. That sequence is your early intervention point.

Step 2: Choose two return routes. Practice them this week during a calm moment. Extended exhale, deliberate physical softening, or cold water. Rehearse them before you need them.

Step 3: After the next hard moment, once you’ve returned to calm, go back to your child. Just presence. Just your regulated nervous system next to theirs. No words required.

Step 4: Replace the standard of perfect regulation with this question instead: Am I repairable? That is the one that actually matters.

You have been carrying an enormous amount for a very long time.

Your nervous system has been running at a level it was not designed to sustain indefinitely. And the fact that you are still here, still learning, still looking for ways to show up better, is not a small thing.

Your regulation is not a luxury. It is your child’s most important resource. And it begins with deciding that your nervous system matters too.

What brings you back when you’ve left regulation? Add a comment below. Your answers help every parent in this community, and I’m grateful that you are sharing.

She’d been parenting her complex autistic son for nine years. She was not new to this. She’d read the books, attended the trainings, built the sensory toolkit, and tried the strategies. And she sat across from me one afternoon, after the third meltdown of the day, she hadn’t slept properly in weeks, and said:

“If one more person tells me to regulate myself, I’m going to lose my mind. What does that even mean when everything is already on fire?”

She was right to push back. Because “stay calm” without any explanation of why or how is not advice. It’s an overused phrase. And you deserve so much better than a platitude.

So today I want to give you what she needed in that moment, and what I suspect you’ve needed for a long time.

Not the advice. The mechanism behind the advice. Because once you understand why your regulation state directly impacts your child’s, staying calm stops being a vague suggestion and becomes the most concrete clinical tool you have.

This Is Not About Energy. It’s About Neurology.

Every parenting resource in the autism space has some version of “your child picks up on your energy” tucked inside it.

And while that’s not wrong, it’s so incomplete that it’s almost unhelpful. Because “energy” sounds soft. Optional. Like something you manage by lighting a candle and taking a breath.

What’s actually happening is neurological. And it is measurable.

Your child’s nervous system is continuously scanning the environment, below the level of conscious thought, automatically, constantly, for information about whether they are safe or not. Researchers call this process neuroception. And the most powerful signals it reads are not words.

They are you.

Your pace of movement. The tension in your jaw and shoulders. The tempo and tone of your voice. The expression on your face. Your breathing rate.

Your child’s nervous system is reading all of it, all the time, and using it to calibrate its own internal state.

When your nervous system signals safe, your child’s nervous system receives: safe.

When your nervous system signals threat, even if you’re just exhausted and tight and holding yourself together by a thread, your child’s nervous system receives: threat.

This is how the autonomic nervous system works. And for children with complex autism, the stakes around this are even higher than most people realize.

Why This Is More Important For Your Child Than For Most

Co-regulation, the process by which one nervous system stabilizes another through proximity, presence, and physical cues, happens in all children. But for children with complex autism, the need for it is amplified in ways that matter enormously.

Many autistic children have what researchers describe as a narrower window of tolerance. Their nervous system reaches its limit more quickly than a neurotypical child’s. It also takes longer to return to baseline once it’s been dysregulated.

At the same time, the internal self-regulation skills that most children develop gradually over time, partly through thousands of co-regulation experiences, are still being built. Which means your child is more dependent on external co-regulation, not less. And more sensitive to the signals they receive from the people closest to them.

Your calm matters more for your child than it would for a neurotypical child. Not less.

And your dysregulation, your entirely human, completely understandable moments of being at the absolute end of your rope, lands with more weight on your child’s nervous system than it would on a child whose regulatory system is wider and more flexible.

I am not telling you this to add to what you’re already carrying. I am telling you because understanding the mechanism is what makes change possible. It gives you a reason that actually makes sense, and a reason that makes sense is the beginning of a real shift.

The Three Gears Your Nervous System Runs On

The science here comes from polyvagal theory, developed by neuroscientist Stephen Porges, which maps how the autonomic nervous system moves between states. In plain language, your nervous system has three primary gears.

The green zone. This is the regulated, connected state. You can think clearly, communicate, make decisions, and feel empathy. Your voice is warm. Your face is open. Your body is available. This is the state from which co-regulation actually flows. This is where your child’s nervous system can borrow your calm state.

The red zone. Fight or flight. Heart rate elevated, muscles tight, thinking narrowed to the immediate crisis. Your voice flattens or sharpens. Your face tightens. Your body closes. This state does not co-regulate your child. It activates them. Even when you’re not saying anything alarming, your body is.

The shutdown zone. Numbness. Withdrawal. The flat, disconnected state that many chronically stressed parents find themselves in without fully recognizing it. This state also cannot co-regulate. It signals unavailability, and your child’s nervous system reads that too.

Your child needs you in the green zone. Not perfectly and not constantly. But reliably enough, and recoverable enough when you leave it, that your nervous system can be the external anchor their nervous system needs when it can’t find its own footing.

That is what co-regulation is. And it is absolutely buildable.

Coming in Part 2

Now that you understand the mechanism, why your nervous system state matters, and exactly how it impacts your child’s, we can talk about what to actually do with that understanding.

In Part 2, I’m giving you three concrete practices that make regulation possible even on the days that are already falling apart before they’ve begun. Physiological tools grounded in how the nervous system actually works.

Until then, I want you to try one thing.

For the next few days, pay attention to your body in the moments just before you feel yourself escalating. What happens in your jaw, your shoulders, your breathing, your voice in those first twenty seconds?

You don’t need to change anything yet. Just notice.

That noticing is the beginning of everything that comes next.

What does it feel like in your body when you’re starting to lose regulation? Tell us in the comments. Let’s build a community of parents who understand.

Today, we move from understanding to action.

Because information without a plan just adds to the pile of things you’re already carrying. And you don’t need more things to do. You need tools.

The Shift That Changes Everything

Before we get to strategies, there’s a mindset shift that has to come first. Because without it, the strategies won’t land the way they should.

When your child can’t initiate a movement, can’t get their body to start, can’t follow through on something you know they’ve done before, the natural human response is to wonder if they’re choosing not to.

Here is what I need you to think about instead: difficulty starting movement is not defiance. It is a motor planning challenge.

The inconsistency that is so confusing and so exhausting, perfectly capable on Tuesday, completely unable on Thursday, is not manipulation. It is the defining characteristic of whole-body apraxia. We call it consistently inconsistent. And once you truly internalize that, the way you respond in those moments changes completely.

You stop trying to motivate. You start trying to coach.

And those are very different things.

Motor Coaching: What It Actually Looks Like

Think about how a great sports coach works. They don’t stand on the sideline and tell an athlete what the goal is and then wait for results. They break the skill into its smallest components. They guide the athlete through each step. They repeat, adjust, and repeat again, without interpreting a bad practice as a character flaw.

That is exactly what your child needs from you.

Here’s how to apply it practically:

Break every task into its actual steps.

What looks like a simple one-step request is almost always a multi-step motor sequence. “Get your backpack” requires your child to shift their gaze, orient their body, initiate walking, reach, grasp, lift, and carry. That is eight distinct motor actions before they’ve even made it to the door.

Try this: do the task yourself and count the steps. Then coach each one, not the whole task at once.

Change how you prompt.

Most of us give directional prompts, we name the goal. “Get your backpack. Come to the table. Put on your shoes.”

Motor coaching prompts guide the movement itself:

“Turn your body toward the door.” “Get your eyes on the backpack.” “Bring your foot forward.” “Reach your hand out.”

You are not telling your child what to accomplish. You are walking their body through how to get there, one step at a time, in real time.

Repetition is the point. Not the problem.

Progress with whole-body apraxia looks like a sports skill being learned. It requires practice, consistency, and a lot of patience with a process that is genuinely nonlinear. Your child may need to practice the same sequence dozens of times before it becomes accessible under pressure.

That is how motor learning works.

Celebrate movement, not just outcomes.

The reached hand matters, even if the backpack didn’t make it all the way. The attempted step matters. The effort to initiate matters. When you acknowledge the movement, you are reinforcing the motor path. Over time, those acknowledgments add up to more consistent movement.

Prompts Are Not Crutches

One thing I hear from parents regularly: “But am I making them too dependent on my prompts?”

Here’s my answer: we all use prompts. You set an alarm to remember an appointment. You write a list before the grocery store. You have a routine that tells your body it’s time to sleep.

Prompts are not a sign of weakness or dependence. They are tools that support the brain-body connection when it needs help. For a child with whole-body apraxia, what looks like prompt dependence is often just a brain-body disconnect that hasn’t yet built its own reliable pathway.

Your job is to be the bridge while that pathway is being built. Not to remove the bridge prematurely and wonder why your child can’t cross.

The Secret to Knowing: Behavior or Whole-Body Apraxia?

I promised you this in Part 1. Here it is.

Presume it’s whole-body apraxia first. Always.

Not because behavior never exists. But because if you presume whole-body apraxia and you’re wrong, the worst outcome is that you responded to your child with patience, support, and motor coaching they didn’t technically need.

If you presume behavior and you’re wrong, if you respond to a neurological challenge with consequences, with frustration, with the assumption that your child is choosing this, the cost to your child is significant. To their trust, their confidence, their sense of safety with you.

The safest, most respectful, most effective starting point is always to assume the body needs support before you assume the child needs correction.

Over time, as you understand your child’s patterns more deeply, the picture becomes clearer. But lead with support. Always.

Your Action Plan This Week

Step 1: Pick one task your child struggles with consistently. Write out every single motor step it actually requires. You will likely surprise yourself.

Step 2: Practice coaching that task using movement prompts instead of goal prompts. Use this formula: Body Part + Action. Do this for one week before evaluating.

Step 3: The next time your child is inconsistent, can do something one day but not the next, say out loud, even just to yourself: “This is whole-body apraxia. This is not a choice.” Notice how that changes your response.

You came into this newsletter asking a question that most professionals have sidestepped for years.

Is it behavior, or is it something else?

Now you have a real framework for answering it. And more importantly, you have a real plan for responding to it, one that leads with support, with respect, and with the kind of coaching your child’s nervous system actually needs.

That is everything.

What’s one task you’re going to try motor coaching this week? Let us know how it went! Your comments and suggestions will only help other parents and caregivers in this community.

You can feel it before you even turn off the engine, the anxiety that has become so familiar you barely notice it anymore. You know what might happen the moment those feet hit the pavement. You’ve prepared. You’ve reminded. You’ve tried every strategy you can think of.

And still, your child bolts.

Or freezes. Or does the complete opposite of what you just asked. Or does it perfectly today and can’t find it at all tomorrow.

And the question that follows you, into the parking lot, into the therapy waiting room, into the school, is the one most professionals have never given you a straight answer to:

Is this behavior intentional? Or is something else happening that nobody has properly explained to me?

Let me explain the answer.

The Problem Starts With How Autism Is Diagnosed

Before we can answer the behavior question, we need to back up to something most parents were never told about the diagnosis itself.

Autism is diagnosed through observation. There is no blood test. No brain scan. No biological marker. A psychologist or neurologist watches how your child acts, responds, and interacts, typically using a structured assessment called the ADOS, and draws conclusions from what they see.

Here is what almost nobody mentions in that appointment: every single thing your child is being assessed on requires intentional motor skills.

To show what they know, your child has to plan a response, organize the steps, initiate the movement, execute it, and adjust as they go. That entire sequence, from intention to action, is called praxis. And when there is a breakdown anywhere in that sequence, the assessment doesn’t measure what your child knows.

It measures what their body could perform on that day, in that room, under those conditions.

That is an enormous distinction. And most of the professionals making decisions about your child’s future have never been asked to think about what they are actually measuring.

The Layer Nobody Talks About: Sensory Processing

Here’s where it gets even more complex, and even more important.

Before the body can move intentionally, the brain has to make sense of everything coming in: what your child sees, hears, feels, and how their body registers its position in space. All of that sensory information has to be processed before a single intentional movement can happen.

Sensory processing drives motor ability. And motor ability is what every assessment is measuring.

Think about what this means practically. If your child’s brain is registering background noise at a volume that drowns out your voice, they may miss something, not because they weren’t listening, but because their sensory system couldn’t filter it. If their body doesn’t reliably register where their feet are on the floor, initiating movement feels genuinely disorienting.

Every child has a completely unique sensory profile. What feels like normal input to you may feel like chaos to your child. And that sensory-motor mismatch makes standardized evaluations profoundly unreliable for children with complex autism.

So when a report comes back describing cognitive delays - pause. Ask this question: Is this measuring my child’s thinking, or is it measuring their motor ability?

Those are not the same thing. And collapsing them into one has shaped the trajectories of far too many children.

So, Is It Apraxia, Or Is It Cognitive Delay?

This is the question parents ask me most.

And the honest answer is: we often cannot know, until a child has a reliable way to communicate.

Until a nonspeaking or unreliably speaking child has the motor skills to show us what they know, through typing, spelling, or a genuinely accessible AAC system, we cannot make accurate claims about their cognitive level. We are guessing. And the guess has almost always defaulted to the most limiting assumption.

What I know from nearly twenty years of working with these individuals is this: I have watched children labeled as severely intellectually disabled learn to type, spell, and communicate thoughts of extraordinary complexity, once their motor challenges were actually addressed. What changed wasn’t their intelligence. What changed was their access to showing it.

Intelligence was not absent. It was trapped behind a motor planning problem nobody had properly treated.

This is why my starting point with every child is always the same: presume competence. If I’m wrong, the worst outcome is that I’ve over-educated a child. If the system is wrong in the other direction, and it frequently is, the damage is profound and lasting.

Coming in Part 2

Now that we understand what’s actually happening underneath what looks like behavior, we can talk about what to do about it.

In Part 2, I’ll walk you through practical motor coaching strategies you can start using at home right away. I’ll explain why the way we prompt our children matters enormously. And I’ll give you the mindset shift that changes everything about how you show up for your child in the hard moments.

Until then, I want you to try one thing this week.

Pick one moment that you’ve been reading as behavior, a refusal, a freeze, a meltdown that came from nowhere, and ask yourself: what if this wasn’t a choice? What if this was a body that couldn’t cooperate?

Notice what shifts when you ask that question.

What’s the moment that made you first wonder if it was something more than behavior? Leave a comment below. Your story could help other parents and caregivers in their journey.

Today, we’re talking about what you actually do with that information.

Because knowing the problem is only useful if it leads somewhere.

Start Here: Assume They Would Change If They Knew

Before we talk about advocacy, I want to establish something important.

Most therapists who are underserving your child are not doing it out of indifference. They are doing it out of a genuine gap in their education, one they didn’t choose and may not even be aware of.

You cannot hold someone accountable for not knowing something they were never taught.

What you can do is bring the information to them. Share it clearly and respectfully. Give them the opportunity to learn and adjust.

And then, if they choose not to, that’s a different situation entirely. That’s a choice. And that does become something you hold them accountable for.

But start with generosity. Most therapists went into this field because they genuinely want to help children. Give them the chance to do that better.

How to Actually Have This Conversation

Walking into a therapy session and announcing that everything they’re doing is wrong is not going to serve your child. Here’s a more effective approach.

Step 1: Learn it well enough to explain it simply.

Before you can advocate for whole-body apraxia, you need to be able to describe it in a sentence or two. Something like: “Whole-body apraxia is a motor planning breakdown that affects my child’s ability to initiate, sustain, and stop intentional movement across their entire body, including communication. It’s not a fine motor issue or a behavior issue. It’s neurological.”

When a therapist understands that this is a motor planning challenge, not willfulness, not cognitive limitation, the shift in how they see your child often happens naturally.

Step 2: Introduce presuming competence as a practice, not a philosophy.

Don’t make it abstract. Make it concrete. Tell them: “I need everyone working with my child to speak to them directly, at an age-appropriate level. To teach content that respects their intelligence. To never speak about them in front of them as if they aren’t in the room.”

Presuming competence isn’t just a belief system. It shows up in specific, observable behaviors. Give your child’s team specific things to do differently, not just a concept to agree with.

Step 3: Share resources.

You don’t have to be the sole source of this education. Send them videos. Send them articles. Point them toward clinicians who specialize in this area. The goal isn’t to win an argument; it’s to get your child better support. Use every tool available to make that happen.

Red Flags That Tell You It’s Time to Move On

Giving a therapist the information and the opportunity to grow is the right first step. But it cannot be an indefinite step.

If real change isn’t happening, not just verbal agreement, but actual change in how they work with your child, then staying is no longer in your child’s best interest.

Here’s what to watch for:

For OTs:

If your child’s occupational therapist is still primarily focused on isolated fine motor tasks while your child clearly struggles with initiating movement, managing impulsivity, pacing their body through a sequence, and coordinating whole-body actions, something is missing.

OT for a child with whole-body apraxia should prioritize motor coaching. It should look like supporting movement through real, functional, age-appropriate tasks. It should look like someone who understands that the body needs to be coached through a motor sequence, not just told what to do.

One thing that might surprise you: if your child is older, say, 10 or above, and the primary need is building functional, intentional movement, a well-informed personal trainer may actually serve them better than a traditional OT in some cases. Not for sensory or neurological work, but for the movement-building piece specifically. An OT who understands whole-body apraxia will tell you the same thing.

For SLPs:

Watch for whether your child’s speech therapist understands that whole-body apraxia affects all intentional communication, not just speech.

If they are pushing sign language as a simpler alternative to speech without recognizing that signing requires the same motor planning as speaking, that’s a gap. If they are introducing an AAC device without first teaching the motor planning your child needs to use it as reliable communication, that’s a gap.

Your child needs a communication pathway that is built around how their motor system actually works. A therapist who doesn’t understand that cannot build it.

The Question That Tells You Everything

When you’re trying to assess whether a therapist is truly right for your child, there’s one question underneath all the others.

Does this person believe in my child?

Not in a “greeting-card” way. In a practical, observable, daily practice way.

Do they speak to your child directly, or over them? Do they bring age-appropriate material to sessions, or pull out the toddler toys for your teenager? When your child can’t initiate a response, do they provide motor coaching or record it as a failed trial?

The answers to those questions tell you more than any credential on the wall.

Your child spends hours in these therapy rooms. They absorb how they are treated. They register whether the person across from them sees them as a whole, capable, intelligent human being, or as a collection of deficits to be managed.

That experience shapes them. It should be a good one.

You Have Already Done Something Hard

I want to close with this.

The fact that you are reading this, learning this, carrying this information into every appointment, fighting for your child to be seen accurately, is not a small thing.

Most parents of children with complex autism are exhausted. They are running on too little sleep, too little support, and too much uncertainty. And they are still showing up, still learning, still refusing to accept less than their child deserves.

That is profound. And your child knows it, even when they can’t show you that they do.

You don’t have to find the perfect therapist overnight. You don’t have to get every conversation right. You just have to keep asking the right questions, and now you know what those questions are.

Your child deserves therapists who believe in them completely. Don’t stop until you find them.

Your Action Plan This Week

Step 1: Practice explaining whole-body apraxia in two sentences. Say it out loud until it feels natural.

Step 2: At your child’s next therapy appointment, notice specifically how the therapist speaks to your child. Direct? Age-appropriate? Or over them, around them, about them?

Step 3: If you haven’t yet had the whole-body apraxia conversation with your child’s team, schedule a time to do it this week. Come prepared. Come respectfully. Come with resources.

Step 4: Honestly assess: has anything changed since the last time you raised these concerns? If the answer is no, give yourself permission to start exploring other options.

Where are you in this process? Are you in the middle of these conversations, or just starting to find your footing? Comment and let me know. Your journey can help those parents who are just starting.

Your child, the one who uses his iPad to play Elmo videos that are appropriate to the situation, the one who understands everything happening in the room, the one whose intelligence shows up in ways most people miss, is sitting across from a therapist who is holding up a picture card.

Or doing pegboard puzzles. Or sorting shapes. Or practicing the same fine motor task they’ve been practicing for three years.

And you’re sitting in that waiting room, or watching through that window, thinking: They are so much more than this. Why can’t anyone see it?

Here’s what I want you to know: your therapist probably isn’t failing your child on purpose. They’re failing your child because nobody taught them what you already know.

That distinction matters because it changes everything about how you move forward.

What Therapists Are Actually Taught

Let me let you in on something that rarely gets discussed outside of university lecture halls.

Occupational therapists and speech-language pathologists go through rigorous, demanding training programs. They are not undertrained in general. But when it comes to complex autism, and specifically whole-body apraxia, there is a gap in that training so significant that most therapists graduate without knowing it exists.

Here’s what OTs are typically taught to address in complex autism:

Fine and gross motor skill development. Sensory processing and integration. Daily living skills like dressing, toileting, and feeding. Adaptive strategies for home and school. Social skills training. Community participation.

And critically, they are taught to simplify. Fewer words. Simpler instructions. Scaled-back expectations. The assumption, baked into the training, is that a child with complex autism has limited ability to process language and cognitively complex material. So the toys come out. The picture cards come out. The farm animal figurines come out.

I know because I was trained this way too. And looking back at my early career, I wish I could undo some of what I did, not because I didn’t care, but because I didn’t know what I didn’t know.

SLPs receive a different but equally incomplete picture.

They learn augmentative and alternative communication, PECS, sign language, speech-generating devices. They learn social communication strategies, functional communication training, and visual supports. Some pursue additional training in specific communication programs.

What they are not taught: that apraxia is not just a speech issue. That it can affect the entire body. That the same motor planning breakdown that makes speech difficult makes signing difficult, makes using an AAC device difficult, makes every form of intentional communication a significant motor challenge.

The assumption in SLP training is that if speech isn’t working, signing is the easier alternative. For a child with whole-body apraxia, that assumption is wrong. All intentional communication requires motor planning. And that’s a fact most SLPs were never given.

The Two Things Missing From Almost Every Training Program

When I look at what therapists across both fields were never taught, it comes down to two fundamental gaps.

Gap #1: Whole-Body Apraxia

OTs learn about motor planning, which we call praxis, in a general sense. SLPs learn about childhood apraxia of speech. But neither field connects these concepts to what’s actually happening in a child with complex autism.

Whole-body apraxia is not a fine motor delay. It’s not a gross motor delay. It is a breakdown in the brain’s ability to plan, sequence, and execute intentional movement across the entire body.

This includes:

• Initiating movement—getting the body to start an action

• Sustaining movement—keeping the body in motion through a task

• Inhibiting movement—stopping the body when needed

Of these three, initiation is often the most challenging. And here’s why that matters so much: when a child with whole-body apraxia cannot initiate a response, it looks like noncompliance. It looks like refusal. It looks like “not trying.”

A therapist who doesn’t understand whole-body apraxia sees behavior. A therapist who does understand it sees a neurological challenge that requires a completely different response.

That difference determines everything about how your child is treated.

Gap #2: Presuming Competence

This concept was not part of my training. It was not part of most therapists’ training. And its absence has caused enormous harm to an entire generation of children with complex autism.

Presuming competence means operating from the belief that your child has the capacity to learn, to understand, and to have a rich inner life, regardless of what they can currently demonstrate. It means the inability to show knowledge is not the same as the absence of knowledge.

When this mindset is missing, a therapist looks at a nonverbal teenager and pulls out toys designed for a four-year-old. They talk about your child while your child sits right there. They cap their expectations at what the data shows instead of what the child might actually be capable of.

And your child, who understands everything, experiences that.

Every. Single. Session.

Why This Is Still Happening in 2026

You might be wondering: if this information exists, why isn’t it in the curriculum for professionals?

Because professional training programs are slow to change. Because whole-body apraxia has only recently begun gaining the recognition it deserves. Because presuming competence challenges foundational assumptions that have been built into autism intervention for decades.

The field is shifting. But it’s shifting slowly, far more slowly than your child needs.

Which is why what you know, and what you’re willing to advocate for, matters so much.

Coming in Part 2

Next, we’re getting practical. I’ll walk you through exactly how to talk to your child’s current therapists about whole-body apraxia and presuming competence, even if they’ve never heard these terms.

I’ll tell you the specific red flags that tell you it’s time to move on from a therapist. And I’ll share something that might surprise you about when an OT isn’t actually the right answer for your child anymore.

Until then, I want you to notice one thing this week.

Watch how your child’s therapist speaks to them. Not about the activities, not about the goals, just the words they use and the assumptions underneath them. Do those words carry the weight of someone who believes in your child?

That observation is the beginning of a very important conversation.

What’s the most frustrating thing you’ve experienced with a therapist who didn’t understand your child? Please comment below. Your story can help other parents who may be in similar situations.

And almost immediately, someone handed you a referral. A recommendation. A next step that was presented less like an option and more like an obvious conclusion.

“You’ll want to look into ABA therapy.”

Maybe you didn’t question it. Why would you? It came from a doctor, a specialist, someone with credentials and confidence. It’s covered by insurance. Everyone seems to recommend it. There’s research behind it.

So you made the calls. You joined the waitlist. You did what you were told was best for your child.

But here’s what I ask parents: When was the last time someone actually explained why? Not just that ABA is recommended, but why it became the default answer for every child with autism, regardless of their individual profile?

I think you deserve the full picture.

How ABA Became the Only Answer Anyone Gives

To understand why ABA dominates the conversation, you have to understand how medical recommendations actually get made.

Insurance coverage follows research. ABA has more published research behind it than any other autism intervention currently available. In a system that requires evidence-based treatment before approving payment, evidence is the only way it will be covered. ABA also produces something the medical world loves: measurable data. Trial counts, response percentages, progress charts. Numbers that can be put in a report and handed to an insurance company.

Because insurance covers it, families pursue it. Because families pursue it, more data gets collected. Because more data exists, it stays at the top of every recommendation list.

But here’s a question: Does “most researched” automatically mean “best fit for your child?”

Research tells us what works on average, across populations. It doesn’t tell us what’s right for your child, the one with their particular neurological profile, their sensory needs, their communication challenges, their history.

What the Research Actually Says, And What It Doesn’t

Proponents of ABA point to decades of studies showing improvements in communication, daily living skills, and reduction of certain behaviors. Many parents report meaningful gains. Their experiences are real, I’m not suggesting otherwise.

At the same time, a growing body of research and a chorus of older individuals with autism who received ABA as children raises questions that don’t have easy answers.

Some autistic adults describe their ABA experience as deeply harmful. They talk about learning through thousands of repetitions - over and over. That compliance was the goal. Who they were needed to be changed or corrected.

Others describe their ABA experience as genuinely helpful, a structured environment where they built skills that gave them more independence and confidence.

Both of these things are true. And that complexity is exactly why this decision deserves more than a default recommendation.

The question isn’t whether ABA has ever helped anyone. It’s whether it’s the right fit for your child, right now, with this particular team, given what your child actually needs.

What ABA Does Well, And Where the Gaps Are

ABA is genuinely skilled at breaking complex tasks into small, sequential steps. We call that “Task Analysis.” For individuals who need to learn a multi-part skill, that structured approach can have real value. The data collection, when used thoughtfully, can help track progress in ways that inform good decision-making.

But here are the questions I’d encourage you to ask about any ABA program your child is in or considering:

When your child can’t complete a task one day that they could do the day before, how does the team explain that?

For children with whole-body apraxia, inconsistency isn’t a motivation problem or a compliance problem. It’s neurological. The brain’s ability to plan and execute movement fluctuates based on fatigue, stress, sensory state, and factors we can’t always identify. A program that records inconsistency as non-compliance is misreading your child at a fundamental level.

When your child shows a challenging behavior, what is the team’s first question?

Is it “how do we reduce this behavior?” Or is it “what is this behavior communicating, and why is it happening?”

There’s a significant difference. Behavior doesn’t emerge from nowhere. It emerges from somewhere: gut pain, sensory overwhelm, chronic anxiety, the frustration of not being able to communicate. A program focused purely on modifying the behavior without investigating the root cause may be addressing the symptom while leaving the actual problem entirely untouched. This can have significant consequences, including trauma.

Does the team speak to your child as an intelligent person, regardless of what your child can currently demonstrate?

This is called presuming competence, and it matters more than most intervention frameworks acknowledge. The inability to show knowledge is not the same as the absence of it. Does your child’s team operate from that assumption? Or do they calibrate their expectations and their respect to what your child can prove in a given moment?

Is sensory input being used as a tool for regulation, or as a reward for compliance?

Sensory regulation is a biological need, not a treat. A child who needs movement, deep pressure, or proprioceptive input needs those things the way they need food and sleep. Using them as incentives to be earned raises a question worth asking: What happens to your child’s regulation in the hours when those needs go unmet because the compliance threshold wasn’t reached?

The Root Cause Checklist That Is Essential

Here’s something I think about when I’m trying to understand what’s driving a child’s most challenging moments.

Before we talk about behavior strategies, I want to know:

Is there gut pain? Constipation, reflux, food sensitivities, and gut inflammation cause chronic discomfort. A child who is hurting and cannot communicate that hurt will find another way to express it.

Is the child living in chronic stress and anxiety? Not occasionally dysregulated, but running in a persistent state of fight-or-flight that colors every demand, every transition, every unexpected moment of the day?

Is the sensory environment supporting them or working against them? Lighting, noise, unpredictability, these aren’t minor background factors. For children with significant sensory differences, the environment is either a resource or a constant source of overwhelm.

Does the child have reliable access to communication? Not just a device that exists, but a genuine, supported pathway to express pain, preference, confusion, and need. Because when that pathway is missing or unreliable, frustration builds in ways that are eventually impossible to contain.

Here’s the most important question: If any of these factors are present and unaddressed, how much of what’s being labeled as “behavior” is actually pain, dysregulation, or emotional trauma?

No behavioral intervention alone answers these questions. You can shape a behavior into compliance. You cannot data-collect a child out of gut pain or reward a nervous system into feeling safe.

ABA Is Not the Only Path

I want to say this clearly, because families are often made to feel that without ABA they are somehow giving up on their child.

That is not true.

There are families navigating complex autism without a single hour of ABA. They’ve chosen occupational therapy with practitioners who genuinely understand whole-body apraxia. Speech therapy with clinicians who recognize that apraxia extends far beyond speech and who embrace alternative communication without reservation. Biomedical approaches that address root causes at the physiological level.

These are legitimate, researched paths that consider the whole child rather than specific observable behaviors.

The right intervention for your child is the one built around who your child actually is, their neurology, their sensory profile, their communication needs, and their body. Not the one with the most insurance billing codes or the longest research bibliography.

If You Are Currently In ABA

One important note: There are many ABA therapists that I know who are really making an effort to change. They realize that the “old” ABA doesn’t consider the whole child. I have so much respect for these individuals and hope that more consider a paradigm change. I’m not suggesting you walk out of your child’s program tomorrow. I’m suggesting you walk into it feeling confident and with your standards high.

Ask the team: Do you understand whole-body apraxia, and how does that understanding specifically change how you work with my child?

Ask: When you see a challenging behavior, what is your process for identifying the root cause before implementing a strategy?

Ask: How do you presume competence in your daily practice with my child?

Ask: How is sensory input incorporated into my child’s day, and is it available as a need, or offered as a reward?

The answers, and just as importantly, the way those questions are received, will tell you a great deal about whether this program is truly built for your child.

A team that welcomes these questions is a team worth working with. A team that becomes defensive or dismissive is giving you information you need to hear.

What You Deserve to Know

I’m not here to tell you ABA is wrong. I’m here to tell you that no single methodology is right for every child, and that you deserve to make this decision with full information rather than a referral and an insurance approval.

Your child is not a diagnosis to be managed. They are a whole, intelligent, complex person whose inner life runs deeper than any data sheet can capture.

Every person working with your child should know that. Should act on it. Every single day.

That’s not too much to ask. That’s the start.

What questions is this raising for you? Leave a comment and tell me where you are in this process. What has your experience been?

The sleep that never comes, or never lasts. The stomach problems that no one can explain. The meltdowns that seem to come from nowhere and leave everyone wrecked. The anxiety that hums underneath everything. The regression after every illness that sets you back weeks of hard-won progress.

You’ve seen specialists. You’ve tried interventions. You’ve read everything you can find.

And yet the pieces never quite connect into a picture that makes sense.

What if they’re not separate problems? What if they’re all signals from the same source?

Today I want to introduce you to something that most doctors aren’t talking about, but the research says they should be. It’s called mitochondrial dysfunction, and for up to 80% of autistic individuals, it may be the missing piece that explains more than you’d expect.

First: What Are Mitochondria, Really?

You probably remember “powerhouse of the cell” from middle school biology. But they are actually much more than that.

Mitochondria are the structures inside your cells that take the food your child eats and convert it into actual usable energy. Every cell in the body depends on that process.

But mitochondria do more than produce energy. They also:

• Clear out damaged and dying cells

• Regulate metabolism

• Support the immune system

• Help the body detoxify

And here’s what matters most for your child: the developing brain is one of the most energy-hungry organs in the entire human body.

When mitochondria aren’t functioning properly, the brain doesn’t get what it needs to develop, regulate, and function. Neither does the gut. Neither does the immune system. Neither does the nervous system.

Everything that requires energy, which is everything, takes a hit.

For children with complex autism, this isn’t a minor issue. For many of them, it’s central to what you’re watching play out every single day.

5 Signs You May Be Seeing in Your Child Right Now

1. Sleep That’s Disrupted, Unpredictable, or Just Never Enough

Mitochondrial dysfunction disrupts the body’s internal clock, the circadian rhythm, and interferes with melatonin production. Melatonin is the hormone that signals the body to wind down and prepare for sleep. When that signal is weak or mistimed, falling asleep is hard, staying asleep is harder, and the sleep that does happen isn’t the deep, restorative kind the brain needs to recover.

This isn’t a bedtime routine problem, although a consistent routine is helpful. It starts at the cellular level.

2. Chronic Gut Problems

Digestion is extraordinarily energy-intensive. Breaking down food, moving it through the digestive tract, and absorbing nutrients all require significant cellular energy. When mitochondria are struggling, the gut struggles too. Motility slows. Inflammation increases. And the gut issues that seem to have no explanation? They often have this one.

3. Meltdowns That Seem Disproportionate to the Trigger

When the brain is inflamed and under-energized, its ability to process sensory input breaks down. Managing anxiety becomes harder. Emotional regulation, which requires enormous neurological resources, becomes nearly impossible. The meltdowns aren’t behavioral. They’re a brain without enough fuel trying to handle a world with too much input.

4. An Extremely Limited or Processed Diet

Ultra-processed foods actively work against mitochondrial health. They’re stripped of the nutrients mitochondria need to function and packed with additives that add to the body’s already high toxic load. For children who are already selective eaters, the foods they’re most likely to accept are often the ones doing the most mitochondrial damage. It becomes a cycle that’s hard to interrupt.

5. Low Energy and Resistance to Movement

When your child avoids physical activity, it’s easy to attribute it to sensory issues or behavior. But there’s often something more fundamental happening: their body genuinely doesn’t have enough energy. Movement feels hard because, for them, it is hard, harder than it should be, for reasons that go beyond what you can see.

Stay with me, because the solution to this one is actually good news.

So What Can You Actually Do?

Start With Sleep, It’s Not Where You’d Expect to Start, But It Is

Sleep is where the body repairs itself. It’s when the brain clears out cellular waste, consolidates learning, and prepares for the next day. Without adequate sleep, nothing else you’re trying to fix will hold.

What does this mean? A consistent bedtime, calming activities in the evening, and, critically, screens off two hours before sleep. Blue light from screens suppresses melatonin production. If your child is on a device until 9 PM and you’re trying to get them to sleep by 9:30, you’re working against their own biology.

This is one of the highest-return changes you can make. It costs nothing, and it supports everything else. Yes, this may be difficult, but start slow. Begin to reduce screen time by just 5 or 10 minutes at first. Then build from there.

Take an Honest Look at What Your Child Is Eating

I know how complicated this is. I’ve written about picky eating before, and I understand that for many of our kids, food is already a battleground.

But here’s the reality, not only for your child, but for everyone in your family: ultra-processed foods are not neutral. They’re actively depleting the mitochondria that your child’s brain depends on.

You don’t have to overhaul everything overnight. Start by adding one whole food. Swap one heavily processed item for a version with fewer ingredients. Look into key supplements that support mitochondrial function: magnesium, CoQ10, and B vitamins are often mentioned in the research, though always consult your child’s physician first.

Small changes to what’s going on make a real difference to what’s happening inside.

Learn About Mitochondrial Dysfunction Because Most Doctors Won’t Bring It Up

This is not yet on the radar of most pediatricians or even most specialists. Which means if you don’t bring it to the conversation, it probably won’t come up.

You being informed is your child’s best advocate.

I’ve included resources throughout this newsletter as a starting point. Understanding the research doesn’t require a medical degree. It requires knowing what to ask, and now you do.

The One Thing That Can Actually Build New Mitochondria

Here’s the piece I saved for last, because it’s genuinely remarkable.

Exercise triggers something called mitochondrial biogenesis. That’s the scientific term for the process of making new mitochondria. And it is, as far as we know, the most powerful way to do it.

Your child’s body can actually grow more of the very structures that are underperforming.

I know movement is complicated for our kids. I know that motor planning challenges, sensory sensitivities, and low energy make exercise feel like a mountain. But here’s what else exercise does alongside building new mitochondria:

It provides the kind of deep proprioceptive input that helps the nervous system regulate. It supports the natural hormonal cycles that govern sleep and waking. It builds motor patterns through repetition in a way that carries over into daily function.

Start small. Motor coaching through movement, not just encouraging your child to move, but actively guiding the motor sequence with them, is how you make this accessible. Once the body starts moving regularly, it gets easier. The energy improves because the mitochondria are improving.

It’s a genuine upward cycle, if you can find the starting point.

Putting It Together

If you’ve spent years watching your child struggle with sleep, gut issues, meltdowns, food, and low energy, and the answers you’ve been given haven’t added up to a real explanation, I hope this gives you somewhere new to look.

This isn’t about blame. It’s not about having missed something obvious. Mitochondrial dysfunction in autism is under-researched, underdiagnosed, and under-discussed. Most families never hear about it.

But the research is there. And so are real, accessible things you can start doing.

Sleep. Food. Movement. Not as extra things to add to the to-do list, but as a unified strategy to support the cellular foundation that underlies all of it.

Your child’s body is working extraordinarily hard every single day. Let’s give it what it needs to do that work.

What questions came up for you reading this? Leave them and your comments below. Tell me about your experience. You’re doing an amazing job!

Today, we’re getting practical. I’m going to give you a realistic action plan that won’t create mealtime warfare.

The Biggest Mistake Parents Make

Before we talk about what works, let me tell you what doesn’t: trying to change everything at once.

I see it all the time. A parent reads about the benefits of a whole foods diet, gets inspired, and decides Monday is the day they’re throwing out all the processed food and starting fresh.

By Wednesday, they’re exhausted. The child is refusing to eat. Mealtimes are battles. Everyone is stressed.

By the following Monday, they’re back to chicken nuggets and Goldfish crackers, feeling like they failed.

You didn’t fail. The approach was set up to fail.

Sustainable change happens slowly. One food. One swap. One small win at a time.

Start With Just One Food

Here’s your first step: pick one food you want to add.

Not eliminate. Add.

Maybe it’s a vegetable. Maybe it’s a less-processed version of something your child already eats. Maybe it’s a new protein source.

Choose something with a similar texture to foods your child already accepts. If they eat crunchy foods, try a different crunchy food. If they prefer soft, stick with soft.

Then, offer it consistently. Not once or twice, consistently. Research shows it can take 15-20 exposures before a child is willing to try a new food.

No pressure.

Place it on the plate alongside accepted foods. Don’t make a big deal about it. Don’t bribe or bargain. Just offer it.

The Role of Motor Coaching in Eating

Here’s something most people don’t realize: eating is a complex motor skill.

It requires:

• Seeing the food

• Deciding to eat it

• Initiating the reach

• Coordinating the grasp

• Bringing the food to the mouth

• Opening the mouth at the right time

• Chewing with proper coordination

• Swallowing safely

For a child with whole-body apraxia, every single step can be a challenge.

This is where motor coaching comes in.

For Children Who Eat Too Fast

Some children with impulsive motor patterns eat so fast they barely chew. They stuff food in their mouth, sometimes choking or gagging.

This isn’t always about hunger or poor manners; it’s impulsive motor patterns.

Motor coaching strategy:

• Don’t put the entire meal on the plate at once

• Place one piece of food at a time

• Coach them through: “Pick up one piece. Put it in your mouth. Chew. Swallow. Now another piece.”

• Continue to practice until they are able to pace

For Children Who Can’t Initiate Eating

Other children want to eat, but their body won’t start the movement. They sit in front of food, frozen, unable to begin.

Motor coaching strategy:

• Break eating into smaller steps: “Get your eyes on the food. Reach your hand out. Pick it up. Bring it to your mouth.”

• Provide hand-over-hand support only if needed, and if okay with it

• Use consistent verbal cues that help their body initiate

The key: You may need to sit with your child through meals, actively coaching. This is a new motor skill; it’s about providing the motor support their body needs.

Co-Regulation at Mealtimes

Mealtimes are often stressful for families with children who have eating challenges.

But here’s what matters most: your nervous system state directly impacts your child’s ability to eat and try new things.

If you’re anxious about whether they’ll eat, they feel that anxiety, and it makes eating harder.

If you’re frustrated about the limited diet, that frustration creates stress that shuts down their willingness to try new things.

Your calm presence is the most powerful tool you have.

Before meals:

• Take three deep breaths

• Remind yourself: this is one meal, not forever

• Let go of the outcome

• Focus on connection, not consumption

During meals:

• Stay physically present

• Keep your energy calm and neutral

• Narrate what’s happening without pressure: “I see you looking at the carrot. You can try it if you want.”

• Celebrate any small exploration, even just touching new foods

Reading Labels: What to Look For

When you’re choosing foods, here’s what to check:

Ingredient count: The fewer ingredients, the better. One-ingredient foods (apple, chicken, rice) are ideal. If it has more than 5 ingredients, it’s heavily processed.

Can you pronounce everything? If the ingredient list includes things like “tertiary butylhydroquinone” or “sodium benzoate,” that’s a red flag.

Where is sugar? Check how many different forms of sugar are listed (corn syrup, cane sugar, dextrose, maltodextrin). If sugar is in the first 5 ingredients, it’s a high-sugar food.

Food dyes: Yellow 5, Red 40, Blue 1, these artificial colors are linked to hyperactivity and inflammation in many children. Worth avoiding.

Look for whole food swaps:

• Regular chicken nuggets → nuggets made with real chicken breast and minimal ingredients

• Fruit snacks → actual dried fruit

• Juice boxes → water with sliced fruit

• Crackers with 30 ingredients → crackers with 5

Small swaps add up over time.

Why the Whole Family Should Change

If you’re the only one eating the “healthy food” while everyone else enjoys pizza and cookies, your child will feel punished and deprived.

But if everyone is eating more whole foods, it becomes the family culture, not a restriction placed on one person.

Plus, honestly? Everyone benefits from less processed food and more nutrients.

Parents report:

• Better sleep for the whole family

• More stable moods

• Fewer illnesses

• More energy

• Improved focus

You’re not just doing this for your child. You’re creating a healthier foundation for everyone.

What Changes When Diet Improves

I’ve seen this pattern over and over:

When families start adding more whole foods and reducing ultra-processed options, even just slightly, things shift.

Sleep improves. Less blood sugar disruption means deeper, more restorative sleep.

Regulation stabilizes. Less inflammation means the nervous system isn’t constantly in fight-or-flight.

Mood evens out. Blood sugar stability means fewer mood swings and meltdowns.

Motor planning improves. When the brain isn’t fighting inflammation and blood sugar chaos, signals to the body become clearer.

Anxiety decreases. Gut health directly impacts anxiety levels.

I’m not saying diet will cure anything or eliminate whole-body apraxia. But it removes barriers that were making everything harder.

Your Action Plan

Here’s what to do this week:

Step 1: Pick ONE food to add. Choose something with a texture your child already accepts.

Step 2: Read labels on 3 foods your child currently eats. Look for swaps with fewer ingredients.

Step 3: Practice co-regulation before one meal. Three deep breaths. Let go of outcome. Stay present.

Step 4: If your child struggles with eating pace or initiation, try one motor coaching strategy.

That’s it. Four small steps. Not a complete diet overhaul. Just four small changes to get you on the right track and feel successful.

Next week, add one more small change. Then another. Over months, these add up to transformation.

Remember

You’re not trying to create a perfect diet. You’re trying to reduce inflammation, stabilize blood sugar, and support your child’s brain-body connection.

Every small step helps. Every whole food you add makes a difference. Every ultra-processed food you swap out reduces inflammatory load.

Progress over perfection. Always.

Your child’s body is working so hard just to get through each day. Give it the fuel that supports it instead of fighting against it.

What’s one small change you’re ready to make this week? Leave a comment below and tell me what has been successful for you and your child. It isn’t always easy, but with a community, it gets easier. You’ve got this!

Day after day. Week after week. Sometimes for years.

You’ve tried everything. You’ve hidden vegetables in smoothies (they wouldn’t drink it). You’ve made foods fun (they wouldn’t touch it). You’ve consulted nutritionists, tried new plates, offered rewards, and even used the iPad.

Nothing works.

And meanwhile, you’re watching your child struggle with meltdowns, sleep problems, constant illness, and dysregulation that seems to come from nowhere.

What if I told you these two things are connected?

What if the limited diet isn’t just a nutrition problem, it’s actively making your child’s motor planning, regulation, and inflammation worse?

Today, I want to talk about something most therapists never mention: how food is either supporting your child’s brain-body connection and regulation or sabotaging it.

The Food Reality We’re Not Talking About

Let me start with something that might make you uncomfortable: more than 60% of what kids in America eat is ultra-processed food.

Not just “processed” like frozen vegetables. Ultra-processed, meaning it barely resembles actual food anymore. It’s been refined, stripped of nutrients, loaded with sugar and additives, and engineered to be addictive.

Chicken nuggets from a bag. Crackers that list 40 ingredients. Fruit snacks made from corn syrup and food dye. Juice boxes with more sugar than a soda.

I’m not saying this to make you feel guilty or to shame you. It’s convenient, affordable, and, let’s be honest, it’s what our kids will actually eat.

But here’s what we’re learning: for children with autism and whole-body apraxia, ultra-processed food isn’t just “not ideal,” it’s inflammatory fuel that makes everything harder.

What Ultra-Processed Food Does to the Body

When your child eats highly processed food, here’s what happens inside their body:

The gut becomes inflamed. These foods damage the gut lining, feed bad bacteria, and create inflammation that travels straight to the brain.

Blood sugar spikes and crashes. Refined carbs and sugar cause rapid blood sugar swings. The spike creates hyperactivity and anxiety. The crash creates brain fog, fatigue, and irritability.

The brain gets inflammatory signals. Remember neuroinflammation we talked about before? Diet is one of the biggest triggers.

Sleep becomes disrupted. Blood sugar crashes in the middle of the night wake the body up. Inflammation interferes with deep, restorative sleep.

Anxiety increases. Blood sugar instability and gut inflammation both directly increase anxiety levels.

Now, imagine a child who’s already working twice as hard as their peers just to regulate their nervous system and coordinate their movements.

Add in food that throws their body into chaos, and you’ve created an impossible situation.

The Connection to Whole-Body Apraxia

Here’s what most people don’t understand: whole-body apraxia is about the brain-body connection.

The brain sends signals. The body is supposed to respond. But for individuals with whole-body apraxia, that communication is disrupted.

Diet directly impacts this communication.

When the gut is inflamed, when blood sugar is unstable, when the body is in survival mode from lack of nutrients, the brain’s signals to the body become even more scrambled.

I see this show up as:

• More dysregulation and meltdowns

• Increased difficulty initiating movement

• More impulsive, harder-to-control body movements

• Brain fog and fatigue

• Sleep that’s restless and non-restorative

• Mood swings that seem random but follow meal patterns

Parents often think these are “just autism” or “just bad days.”

But when we change the diet, even slightly, these patterns shift.

The Picky Eating Trap

Now let’s talk about the elephant in the room: picky eating.

You’ve been told your child is “just picky” or “sensory sensitive” around food. And yes, sensory challenges are real.

But what if some of the picky eating is actually motor planning?

What if your child WANTS to eat something new, but their body won’t let them initiate the movement to try it?

What if they DON’T want to eat what’s in front of them, but they can’t stop their body from eating it because it’s become an automatic motor pattern?

I’ve worked with children who repeatedly choose the same food every single day, not because they love it, but because their body can’t initiate choosing something different from the fridge. The routine has become an automatic motor pattern they can’t override.

Think about that.

How many children “look picky” because their body won’t let them initiate trying a new food?

How many are trapped in food routines that look like preference but aren’t?

How many want to eat differently but their motor system won’t cooperate?

This completely changes how we approach food challenges.

Why Special Diets Feel Impossible

You’ve probably heard about elimination diets, gluten-free, dairy-free, low-sugar, whole foods only.

And maybe you’ve thought: “That sounds great for families who can do it, but my child eats only five foods. I can’t take any of them away.”

I get it. I really do.

The thought of restricting your child’s already limited diet feels terrifying. What if they stop eating altogether? What if mealtimes become even more stressful?

Here’s what I want you to know: you don’t have to overhaul everything overnight.

In fact, trying to change everything at once almost always backfires. It creates stress for you, resistance from your child, and usually ends with everyone giving up and going back to the old patterns.

That’s not what I’m suggesting.

What Actually Works

Instead of removing foods, focus on adding better ones.

Instead of “no more chicken nuggets,” think “let’s add one vegetable this month.”

Instead of eliminating all processed food, think “let’s swap one ultra-processed food for a less-processed version.”

Small additions over time create big changes without the meltdown-inducing stress of restriction.

Start with reading labels. If something has more than five ingredients, it’s heavily processed. If you can’t pronounce the ingredients, your child’s body probably can’t process them well either.

Pay attention to additives, especially food dyes, preservatives, and artificial flavors. These are inflammatory for many children.

And here’s the most important part: make changes for the whole family, not just your child.

If everyone is eating the new food, your child doesn’t feel singled out or punished. And honestly? The whole family will benefit from eating less processed food.

Looking Ahead to Part 2

In the next newsletter, we’ll get practical. I’ll walk you through:

• How to introduce one new food without creating a battle

• The role of motor coaching in eating (yes, eating is a motor skill)

• Why co-regulation at mealtimes matters more than you think

• Real examples of how changing diet changed regulation, sleep, and motor planning

Until then, I want you to just observe. Notice what your child is eating. Notice the patterns, the foods they always choose, the times they’re most dysregulated, and the connection between meals and mood.

Awareness is the first step toward change.

What’s your biggest food challenge right now? Please leave a comment. I want to hear what you’re dealing with. It also helps to know you’re not alone on this journey. Other parents will appreciate your comments, too!

Today, we’re tackling two more beliefs that profoundly limit our children. And then we’re going to talk about what becomes possible when we finally stop underestimating them.

Belief #4: “All Behavior Is Communication”

You’ve heard this, right? It’s the mantra in autism education and therapy.

“Behavior is communication.”

And yes, sometimes it is. Sometimes a child grabs your hand and pulls you to the kitchen because they want a snack. Sometimes they throw a toy because they’re frustrated.

But here’s what this mantra misses: Not all behavior is intentional communication.

Let me explain.

Your child hits. The professional labels it “aggressive behavior” and says they’re “communicating” frustration or trying to escape a demand.

But what if your child has whole-body apraxia? What if that hit was an impulsive movement their body couldn’t stop?

What if they didn’t choose to hit, their arm just moved, driven by sensory overload or emotional flooding, and they couldn’t inhibit the movement?

Now layer on:

• High anxiety that makes impulse control nearly impossible

• Sensory overwhelm that triggers reflexive responses

• Motor planning challenges that mean they can’t reliably control their body

The result: Movements that look purposeful but are actually impulsive reactions.

And here’s the problem: when we practice these movements over and over, when the body hits repeatedly, that movement pattern becomes automatic. It gets easier to do, harder to stop.

It starts to look like intentional aggression. But it began as something the body did without the person’s full consent.

Why This Distinction Matters

When we assume all behavior is intentional communication, we respond with behavior modification: rewards for “good” behavior, consequences for “bad” behavior.

But if the behavior is impulsive, driven by a nervous system in crisis and a motor system that can’t inhibit, then punishment doesn’t make sense. Teaching “replacement behaviors” doesn’t work if the person can’t reliably control their body to perform them.

What does work:

• Addressing sensory overload before it triggers impulse

• Supporting regulation so the nervous system isn’t constantly in fight-or-flight

• Building alternative motor patterns that are easier to access than the impulsive ones

• Presuming that the behavior doesn’t reflect the person’s intentions

Your child trapped in an impulsive body deserves compassion and motor support, not behavior management.

Belief #5: “Test Scores Tell Us What They Can Learn”

This belief gets stamped on children at diagnosis and follows them forever.

IQ test shows low scores? “Intellectually disabled.”
Can’t complete standardized assessments? “Functioning at a 3-year-old level.”
Struggles in school? “Can’t handle grade-level curriculum.”

These labels determine classroom placement, therapy goals, and what we even bother teaching our children.

Here’s what those tests actually measure: motor access, processing speed plus ability to perform in an artificial testing environment.

They don’t measure intelligence. They don’t measure understanding. They don’t measure potential.

Autism Is a Moving Problem, Not a Thinking Problem

Let me say that again because it’s critical: Autism is rooted in the neuromotor system, the connection between brain and body.

The challenge isn’t that autistic individuals don’t understand. The challenge is that they can’t always show what they understand.

Think about a traditional IQ test:

• “Point to the picture that matches.”

• “Build this block pattern.”

• “Answer these questions verbally.”

Every single task requires motor planning. Pointing. Building. Speaking.

If your child has whole-body apraxia, if their motor system doesn’t reliably execute what their brain intends, they can’t demonstrate their knowledge on these tests.

But that doesn’t mean the knowledge isn’t there.

What Presuming Competence Really Means

Presuming competence doesn’t mean assuming your child knows everything.

It means refusing to limit them before giving them the chance to show what they’re capable of.

It means providing:

• Age-appropriate education, even if they can’t yet demonstrate understanding

• Communication systems that work with their motor challenges

• Time to process and respond

• Multiple ways to show knowledge

• The benefit of the doubt

When we presume competence, we discover capabilities we never knew existed.

I’ve seen it over and over: The child written off as “hopeless” who learns to spell and shares profound thoughts. The teenager dismissed as “low-functioning” who types complex ideas about justice, friendship, and their internal experience.

They were capable all along. We just weren’t looking in the right way.

What Changes When We Stop Underestimating

When we challenge these five limiting beliefs, here’s what becomes possible:

We address medical issues instead of accepting suffering as inevitable. Sleep improves. Pain decreases. Energy increases. And suddenly, learning and regulation become easier.

We provide sensory support instead of demanding compliance with sensory overwhelm. We accommodate their different nervous system instead of trying to force them to tolerate what’s intolerable.

We pursue communication that works with their motor system instead of waiting for speech that may never come. We give them a voice.

We support impulsive bodies with compassion instead of punishing movements they can’t fully control. We build better motor patterns instead of just trying to eliminate “bad behaviors.”

We presume intelligence and provide real education instead of limiting them to life skills and compliance training.

And everything, absolutely everything, changes.

What This Means for You

I’m not saying your child will go to college or present in front of a crowd. I don’t know what your child is capable of, and neither does anyone else, including the professionals making predictions.

That’s exactly the point.

We don’t know what’s possible until we stop putting ceilings on our children based on what we think autism means.

Your child may surprise you. Or progress may be slow and incremental. But either way, they deserve:

• Medical treatment for their physical suffering

• Sensory accommodations for their different nervous system

• Communication access that works with their motor challenges

• Presumption of competence and intelligence

• Education that doesn’t underestimate them

They deserve for us to stop saying “that’s just autism” and start asking “what does this child need?”

Moving Forward

Challenge the beliefs you’ve been given. Question the limitations professionals have placed on your child. Investigate the medical issues. Provide communication access. Presume competence.

And watch what becomes possible.

Your child is in there. Behind the motor challenges, behind the communication barriers, behind the test scores that don’t measure what matters.

They’re in there. Thinking. Understanding. Capable of more than we’ve been told.

They deserve for us to see them clearly.

And when we do? That changes everything.

What limiting belief are you ready to let go of? What becomes possible when you do? Leave a comment and let me know. I’d love to hear your perspective.

A professional, someone with credentials, experience, and years of training, said this to a mother about her 8-year-old daughter. Said it with authority. With certainty. As if it were a fact.

That mother sat across from me last month, tears streaming down her face, asking: “What if they’re right? What if I’m hoping for something that’s impossible?”

Here’s what I told her, and what I’m telling you today: The people who said that were wrong.

And the beliefs we’ve absorbed about autism, from doctors, from schools, from therapists, even from other parents, are limiting our children in ways we don’t even realize.

Today, I want to challenge three beliefs that I hear constantly. Beliefs that sound like facts but are actually myths. Myths that, once dismantled, change everything about how we see and support our children.

Belief #1: “They Experience the World Just Like We Do, They Just Need to Try Harder”

This belief shows up everywhere:

“If he would just focus...”
“She could sit still if she really wanted to...”
“He needs to stop trying to get out of things...”

The assumption underneath? That autistic individuals perceive the world the same way we do, and their responses are choices.

Here’s the reality: The autistic sensory experience is fundamentally different from the neurotypical one.

Imagine if every time you walked into a room, the fluorescent lights felt like staring directly at the sun. The hum of the refrigerator sounded like a jet engine. The tag on your shirt felt like sandpaper scraping your skin. And walking across the room required consciously planning every single step because your body doesn’t automatically know how to coordinate the movement.

That’s closer to what many autistic individuals experience constantly.

Their visual system processes information differently. What looks like a simple room to you might be overwhelming visual chaos to them.

Their auditory system picks up sounds you filter out automatically. The background noise you don’t even notice is deafening to them.

Their motor planning system requires conscious effort for movements you do automatically. “Just sit up straight” isn’t a matter of trying; it’s a matter of their brain struggling to coordinate the dozens of muscles required.

This isn’t about behavior or attitude; it’s about neurology.

When we understand this, we stop saying “just try harder” and start asking “what support do you need?”

The Theory of Mind Trap

There’s also this persistent idea that autistic people can’t understand other people’s feelings or perspectives. You’ve probably heard it called “lacking theory of mind.”

But countless autistic individuals have directly contradicted this. They feel deeply. They understand emotions, often more intensely than neurotypical people. They desperately want connection. Their bodies just can’t show it.

The challenge isn’t understanding, it’s expressing it in ways neurotypical people recognize.

Or maybe, and this is worth considering, neurotypical people have failed to learn how to recognize and connect with autistic communication styles.

When we assume autistic people don’t understand feelings, we stop trying to connect with them. We stop presuming there’s a whole emotional world inside that they’re trying to share.

That presumption causes immeasurable harm.

Belief #2: “That’s Just Autism, There’s Nothing We Can Do”

This might be the most damaging phrase in all of autism care.

Your child hasn’t had a bowel movement in a week? “That’s just autism.”
They’re having seizures? “Common with autism.”
Can’t sleep, eating only three foods, sick constantly? “Just part of autism.”

No. Absolutely not.

If a neurotypical child hadn’t gone to the bathroom in a week, we’d be rushing to specialists. We’d be demanding tests, exploring treatments, investigating causes.

But when it’s an autistic child? We’re told to accept it as inevitable.

These are real medical conditions. And when we dismiss them as “just autism,” we miss the actual problems making our children suffer.

Chronic constipation isn’t autism; it’s gut dysfunction that needs treatment.
Sleep problems aren’t autism; they’re often inflammation, pain, or metabolic issues.
Eating only three foods isn’t autism; it might be sensory challenges, yes, but it’s also potentially creating nutritional deficiencies that affect brain function.

Here’s what we know: gut inflammation, mitochondrial dysfunction, chronic pain, and sleep deprivation all directly impact motor planning, communication, and regulation.

When we address the medical issues, we often see improvements in what we thought were “autism behaviors.”

How many children are suffering with treatable conditions because we’ve been told their pain is just part of being autistic?

Your child deserves medical investigation. They deserve treatment. Their physical suffering is not an inevitable part of their diagnosis.

Belief #3: “Nonspeaking Means Nonthinking”

This one breaks my heart.

Parents are told at diagnosis: “Your child is nonverbal and they will most likely have an intellectual disability.”

Educators place nonspeaking children in classes years below their age level because “they can’t demonstrate understanding.”

Therapists set goals around basic compliance rather than academic learning because “we don’t know what they can comprehend.”

Here’s what’s true: Speech is one of the most complex motor skills humans perform. It requires precise coordination of over 100 muscles, perfect timing, breath control, and sequencing, all happening faster than conscious thought.

For individuals with neuromotor challenges, speech may be impossible. Not because they lack thoughts, but because their motor system can’t execute the movements required.

Think about this: Right now, you’re reading this. You’re understanding complex ideas. You’re forming thoughts about what this means for your child.

You’re doing all of that without speaking a single word.

Understanding and intelligence don’t require speech. Yet our entire system operates as if they do.

I’ve worked with nonspeaking individuals who went on to communicate fluently through typing or spelling. They share complex thoughts, feelings, humor, opinions. They write poetry, solve math problems, discuss philosophy.

They were capable all along. They just needed a motor pathway they could access reliably.

The question isn’t “Can they understand?” The question is “Have we given them a way to show us what they understand?”

What This Means for Your Child

When we believe these myths, that our children experience the world like we do, that their medical issues are inevitable, that nonspeaking means nonthinking, we limit what we offer them.

We stop investigating medical issues.
We stop presuming they understand.
We stop expecting growth and learning.
We stop looking for communication methods that work with their motor system.

And our children pay the price for our limited beliefs.

But when we challenge these myths? When we understand the sensory differences, address the medical issues, presume competence regardless of speech?

Everything changes.

Looking Ahead to Part 2

In the next newsletter, we’ll tackle two more beliefs that limit our children:

• The idea that “behavior is always communication.”

• The assumption that test scores reflect intelligence.

We’ll also talk about what changes when we truly presume competence, not just in theory, but in practice.

Until then, I want you to notice: What beliefs are you holding about your child? Which came from professionals? Which have you absorbed without questioning?

What might become possible if those beliefs are wrong?

What belief about your child are you ready to challenge? Write a comment. I’d love to hear from you!