Find my new Patreon account here: patreon.com/cw/AlysAuDHD

Recently, you may have noticed that I’ve been posting more video content. I understand this isn’t really the place for videos. It is, after all, a writing platform.

I’ve felt an increasing disconnect between how I want to share my stories, the type of content I want to create, and what this platform was built for.

Due to this, and a couple of other issues that I won’t bore you with, I’ve made the decision to migrate over to Patreon.

My free member tier will include all the videos I post on socials, with two additional paid tiers: the first with extended conversations and deeper dives into the subjects I’m discussing on socials, and the second with a community chat.

If you’re interested in getting involved, I’d love to see you there.

I’ll be staying on Substack for a little while, but won’t be posting anything apart from a couple of reminders about this.

Find my new Patreon account here: patreon.com/cw/AlysAuDHD

Until next time

Alys xx

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A video of this post is available below or by clicking this link

I didn’t drink to get drunk. I drank because I wanted to feel normal, and this was way before I understood that I was autistic and had ADHD.

As a late-identified autistic woman with ADHD, I can now see my relationship with alcohol in a different light.

I’m going to tell you how I used alcohol as a crutch when I was young, how it shifted from wanting to belong to numbing myself, and how stopping drinking and learning I was neurodivergent changed my life.

Feeling Less “Other”

I started drinking when I was about 14, much more heavily from when I was about 16, and it always made me feel more accepted, more part of a group, less “other” than I usually felt.

It took away some of the social anxiety that I had and made me feel like I could relax and enjoy myself in the company of other people.

Numbing

Somewhere along the line, it stopped being a socialising and anxiety crutch and became a way to numb my emotions and the things that had happened in life.

I experienced quite a bit of trauma. I had a stillbirth at full term at 25. I was in an emotionally abusive relationship at that time, from when I was about 21 right through until about 33.

I had a lot of emotional pain and issues, alongside the fact that, unknowingly, I was masking incredibly heavily all this time, and that in itself causes a lot of trauma.

My alcohol dependence grew as I got older.

I would binge drink at least two or three times a week, but when I met my husband, he would drink a couple of pints a night. Together, we started drinking more often and more heavily.

I was drinking to excess maybe five or six nights a week. I’m not able to drink without drinking to excess. I can’t moderate.

I’d try to take breaks, sometimes go three months or so without having a drink, but the whole time inside my head there was this voice saying, “When are we having a drink?”

Drinking was just a normal part of our relationship from the start.

So Why Did I Stop?

I have many body hang-ups, most of which were inflicted upon me during the emotionally abusive relationship. Then a woman made a comment that completely floored me, and I decided there and then to stop drinking. I knew it was causing issues for me both bodily and mentally. My husband decided to stop alongside me.

Stopping was never an issue. Once I’d made that decision, I didn’t find it difficult at all. We went out for one last session on the 19th of May, 2019, and that was it. We just never drank again.

Dealing with all the emotions and trauma I’d been numbing for all those years was not as easy. By this time, my husband and I had been together for three years; time I could have spent recovering from the previous relationship, but instead I’d just blocked it all out. I had to start processing some of those emotions.

Another Recovery Delay

In 2020, I gave birth to our son. He has very high care needs, is autistic, and has Down syndrome.

I felt grief, and still do, at losing the parenting experience I’d anticipated, and I worried about him constantly. I fell into depression without realising it.

Some of those years are a bit of a blur for me, emotionally. Recovery pretty much stalled.

The Missing Piece

After my daughter was identified as neurodivergent, I began researching what that meant, and the last piece finally clicked into place: it was obvious that I was autistic and had ADHD. This was early in 2024.

Things started to make more sense.

I understood myself better, and that really changed how I approached recovery. I’ve still got a lot of work to do; I’m still unmasking, but I’m definitely going in the right direction.

I don’t miss alcohol at all. I don’t want to drink in moderation; I’m not interested in that path. For me, this chapter is closed.

I have a massive amount of compassion for my past self, and why she needed all that alcohol to cope. That compassion is part of how I’ve been able to move forward.

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If you’re interested in hearing more about my experience as a late-identified autistic woman with ADHD, about my unmasking, burnout, recovery from the past, or my parenting experience with a high-needs child, then please do hit the subscribe button above.

@alysaudhdAs a late-identified AuDHDer, I can look back and see that my relationship with alcohol was way more complicated than I realised. I depended on alcohol throughout my life. Firstly, to feel normal, to fit in and overcome social anxiety, and then to numb traumatic experiences and the resulting emotions. When I stopped drinking and finally realised I was autistic and ADHD, it changed everything. This is the story of my relationship with alcohol and why I have compassion for the previous version of myself that needed that crutch. #alcohol #autism #ADHD #AuDHD #neurodivergent

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Alys xx

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If I’d known I was autistic and had ADHD before having children, would I still have had kids? I think the answer is probably yes, but it’s more complicated than that.

I didn’t know that I was autistic and had ADHD until a couple of years ago. By then I was already a parent of two.

I’m going to tell you a little bit about my situation now, and reflect on what might have been different if I’d known I was neurodivergent before making the decision to have kids.

Current Situation

I have a teenage daughter who’s neurodivergent, and a six-year-old son. He’s autistic and also has Down syndrome.

I’ve been in autistic burnout for years, and I’ve never been able to fully recover because of the demands of parenting a high-needs child.

I wonder, if I’d known about my neurodivergence and the effects that parenting has on my health as a result, would it have stopped me from making the decision to have children?

Honestly, I really don’t think it would.

What Would Guide My Decision?

I could never have predicted having a high-needs child, and I never would have understood what that level of demand actually felt like. It’s something you just can’t understand unless you’re in it.

I would have thought, I’ll learn to cope, I’ll mitigate the issue of being overstimulated.

I always wanted children, and I don’t think anything would have persuaded me otherwise.

What If I Found Out Between Kids?

Although my daughter is neurodivergent, she masked very highly as a child. We didn’t find out until she was a teenager. I didn’t have the experience of having a particularly difficult child when she was younger.

I couldn’t for a minute have imagined how full-on it is to parent a child who has the level of needs that my son has.

But What Could Be Different?

If I’d known more about how my brain worked, maybe I would have been kinder to myself, been more self-aware. Especially in those first few years of my son’s life; I constantly beat myself up for not being a good enough mum. I expected so much of myself, and tried to do everything. I wouldn’t accept or ask for any help.

Since I started unmasking, I’m more willing to ask for support when I need it.

I may have spotted the signs in my daughter earlier on. I might have been able to help her cope better in primary school; she was incredibly skilled at masking, as we females are.

I love my children with all my heart, but I can also accept that motherhood has pushed me into a level of burnout that I could never have anticipated.

If you’d known about your neurodivergence before having children, do you think it would have changed your decision?

@alysaudhdAs a late-identified AuDHD mum, who's been in burnout for years, I often find myself wondering: would my decision to have children have been different if I'd already known I was neurodivergent? Bearing in mind how difficult I've found parenting my son, and knowing that he may never live independently of us, as a high-needs autistic child with Down syndrome.  On reflection, I don't think it could ever have changed my decision, but it may have changed the way I thought about myself earlier, and allowed me to seek more support. If you're in a similar situation, do you think it would have changed your decision? Let me know in the comments 👇🏼  #AuDHD #Autism #ADHD #SpecialNeedsMum #NeurodivergentParenting

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Earlier, I posted a video on my socials and here on Substack in a Note about my son’s PA cancelling her six-hour shift today.

This was the second time this week that we’d had a shift cancelled.

My son is autistic, has Down syndrome and has many additional needs. Caring for him 24/7 is pretty exhausting, especially during the summer holidays. As a late-identified AuDHDer who’s been in burnout for what feels like forever, I need time to rest.

Obviously, the local authority assessed us quite rigorously to see whether we were eligible for direct payments that pay for the PA. It’s not a straightforward process, and they don’t hand it out to people unless they deem it necessary

I was actually quite surprised by some of the responses on YouTube (though I honestly don’t know why - this is the internet after all! 🤣).

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Three people commented, all basically saying the same thing, the crux of which was: “Stop being an entitled bitch and do your job and look after your child.”

They all had a slightly different angle.

One was a full-time single father, and while he said he recognises the need for recuperation, he also said that because I have a husband, he should be able to take a sick day if I’m feeling overwhelmed.

Basically, I should just pull my finger out, get on with it, and stop moping around.

He also said, “…and I mean this respectfully,” which doesn’t actually make what you’re saying any less disrespectful, by the way.

A second person commented that they bet I’m a stay-at-home mum on all sorts of benefits, that I get Carer’s Allowance and money for my child, so I should just do what I’m being paid for: look after my son, stop complaining about things, and stop trying to ask for help I don’t deserve.

I thought these were pretty sweeping assumptions (most of which are wrong), considering I hadn’t mentioned anything about my financial or employment situation.

A third person jumped on the above comment, saying (and I’m paraphrasing), “Yeah, look at her, being so entitled. They’ve got everything, and they want more, just grabbing, greedy people.”

He proceeded to write an incredibly long story about how his mother had suffered brain damage and needed care when he was a child. It was a difficult story and a real struggle for him, and I empathise with that, but I don’t really see how it relates to me and my situation.

And I said as much to him, after expressing my empathy. I asked, “What does your mother have to do with my post?”

He reiterated being a child carer, and his mother getting no support.

I found myself thinking, okay, but you’re saying that your mother struggled, you struggled, and neither of you got the help you needed. (They’d had carers and care homes later on; there was a lot to the story I’m not going to bore you with).

So his position was: they had no help, so I shouldn’t get any help.

He even said that, as a mother, I should do my job, concentrate only on my child, and sacrifice everything else. I’m basically a lazy slob. It pains him to think of my poor son being foisted off onto carers all the time. Why am I posting videos on YouTube complaining about not getting a break from the job that I should be doing?

There’s so much wrong with that statement, but this is the part I want to focus on: why would somebody who struggled so much in their own life, who needed help and support but didn’t get it, feel so angry towards someone else receiving help and not having to struggle as much as them?

I really struggle to understand the mindset, “I didn’t get any help, so you shouldn’t get any. I suffered, so you should suffer. No one deserves help.”

I didn’t take any of this to heart, and would usually ignore this type of comment, but something made me interact today.

I understand why I need and deserve support, but it took me years to reach out and ask for it. I certainly don’t feel the need to justify it to strangers who know nothing about our lives, and I don’t think it should make anyone angry.

Having PA hours during the summer holidays doesn’t make my struggles with my son go away. They still exist.

But yes, it gives me some respite.

It’s just a ridiculous position to take.

Personally, if I were struggling with something and didn’t get any help, I would hope the next people did.

If you had to struggle without help, I don’t want you to wish that struggle on me. I want you to wish that help had existed for you too.

Until next time

Alys xx

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This is not a judgement post - I want to make that immediately clear. It’s not based on research or statistics. This is a personal reflection on MY use of images and videos of my son in my social media posts.

I began creating content for Parenting Differently to communicate all the ups, downs and realities of special needs parenting. I wanted to reach other parents of children with special needs, in particular those with autism and Down syndrome, and reassure them that their realities and their feelings were valid. I wanted them to feel seen and validated in their experiences.

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I initially wanted to do this from the standpoint of a parent, not an account that shared details and images of their child. But content creation is a strange beast with many influences. While trying to improve analytics and comparing myself to other creators, I started bringing more and more of my son into the content. Firstly in photos, then I started using his name, and finally some video footage.

Today I shared two videos about meltdowns and a video where he was having a conversation with me in his own non-speaking way. I felt increasingly uncomfortable about this content.

Over the last month I’ve slowly crept over an invisible line, and today I looked back and saw it. I’ve deleted today’s videos and other posts with video clips or his name in the post.

Numerous parenting creators publish content without ever showing their children’s faces. It’s a blurry line because parenting doesn’t exist without the child, and separating the two things can be quite complex, but it’s possible.

It’s hard to resist the urge to post cute pictures to get extra likes and views, but my priority is my son’s safety; plus, he may never be able to tell me whether he’s happy with his images and footage being published.

This isn’t meant to admonish parents who use images and videos of their children. It’s a completely personal choice.

My future posts will focus on my experiences as a parent and won’t contain any images or videos of my son.

I’m grateful to everyone following along, and I hope you understand my perspective.

Until next time,

Alys x

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They Don’t Call It Expecting for Nothing

Every pregnant person has expectations. Hopes, fears, worries, desires.

When I was expecting Billy, I had an idea of a future that never came to pass, and it never will. I still mourn that loss.

The grief comes from being denied the parenting experience I anticipated, not for my child.

I’d already been denied that experience twice. Once due to a stillbirth at full term. Second, due to an emotionally abusive ex. I thought, third time lucky.

I’ve wrangled with the loss of control and the rawness of grief for 6 years. There won’t be another opportunity; that life will never exist. Fear of an unknown future makes me feel trapped in a life not of my choosing.

When people say ‘I couldn’t do what you do’ - I think, it wasn’t exactly planned. There’s no choice - I have to find the strength, though my capacity wanes frequently.

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Grief ≠ Less Love

This is worth stating, though it feels obvious to me. The love I feel for my child is immense. When we were told they suspected he had Down syndrome at a day old, one of my first feelings was a surge of overwhelming protectiveness and overpowering love.

You can watch my recollection of that moment here:

@parenting.differentlyWhen the nurse said the words Down syndrome I felt my whole world implode, but my love for my baby just got stronger with his diagnosis.

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The Ebb and Flow

The grief lingers in the background, swelling up to the surface unexpectedly - usually due to an unintentional comparison. Kids coming out of school, chatting about their day; families going on holidays or having fun days out; sleepovers, playdates… the list is endless. As a rule, comparison is useless. Sometimes it just creeps in though, opening the door to the grief that was hiding behind it.

Guilt

Guilt is an ever-present partner to the grief, pointless though it is. Logically, I know these feelings are normal, but since when did emotion listen to logic?

If you’re carrying this grief around with you, know you are not alone.

Until next time,

Alys x

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Alys | Parenting Differently, formerly Neurowoven

If you’re an existing subscriber, you may remember I previously wrote about my experiences as a late indentified AuDHDer. This often encompassed parenting and issues relating to my children. I had quite a long break, and on my return, I’ve decided to focus my writing purely on that aspect of my life. If you want to jump ship, I’ll totally understand! Thank you for sticking around this long.

If you’re staying, or if you’re new and fancy subscribing (hit that button below 😜), I want to thank you and explain my reasons for the change.

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A month ago, I started creating social media content about parenting a child with special needs. I realised I have a lot to share - I’m not an expert on autism or Down syndrome, but I am an expert on our lives and how difficult it is to parent differently.

I hope that sharing my honest perspective will help other parents feel less alone.

There’s a lot of guilt and grief tangled up in parenting a child with additional needs; it’s good to know others feel the same way.

I’m not one to sugarcoat experiences or put a positive spin on everything. If something is hard, I’ll say so. If I find joy, I’ll tell you that too. I spent some time working out exactly who my audience is and what I can give them.

Who Am I Creating For?

Parents of children with special needs who don’t feel seen or understood in all their struggles and celebrations - to give them a feeling of validation and community and to raise awareness of the realities of special needs parenting.

My Content is NOT for:

• People looking for specific answers or resolutions to issues they’re facing as special needs parents - though I share things that work for us, I want to reiterate that I am NOT an expert on any specific condition - merely sharing lived experiences

• People who only want to focus on the ‘happy’ or positive side of parenting a child with additional needs

• People who want to make a political statement

• People interested in advocacy for children with additional needs - I want to raise awareness of the reality we face as special needs parents; that’s different to specific advocacy work

How I Share Our Experiences:

1. Practical Perspectives on Special Needs Parenting

Helping people understand the reality of parenting a child with additional needs

2. Micro Stories

Storytelling - small moments from our lives since our son’s birth.

3. The Emotional Side of Special Needs Parenting

The feelings people rarely say out loud.

4. Community

Making other parents feel seen and included.

Billy has taught me more about myself and the world we live in than anyone I’ve met or anything I’ve done.

He’s been my greatest gift and my most important lesson.

Parenting him is NOT easy, especially as a neurodivergent parent. And it’s ok to say that!

Until next time

Alys x

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Facebook: Alys | Parenting Differently

As promised, I'm going to share a video I posted this week on socials; it's a short reflection on my thoughts immediately after my son was born.

My phone will only allow me to post one video per article, I was hoping to share three!

If you'd like to watch more videos from this week, you can see them here:

TikTok

Or search @parenting.differently on Instagram

Or Alys - Parenting Differently on Facebook

(Apparently you can only add one link too 🙄)

I sit in the car, heart pounding, in anticipation of what’s to come. The dreaded school run; the forced social interaction outside the gate. I’m glad school has restarted, but drop-off and pick-up are bigger issues than last year.

Over the last few months, my anxiety has escalated. Events that used to leave me feeling uncomfortable are beginning to feel impossible. Given a choice, honestly, I wouldn’t leave the house.

Many things that make me anxious stem from my neurodiversity. Sensory issues: the sound of chatter, people crowding around me, smells assaulting my senses, to name a few. These have always existed, along with the stress of raising neurodivergent children, one of whom has severe additional needs.

These days, all stress hits harder.

It’s been 18 months since discovering I’m AuDHD. I’ve done a lot of processing, peeled back layers of masking, with many yet to discover. I wonder if it was the mask that held me together? Unpicking its threads has loosened my ability to function. I’m the antithesis of ‘put together’.

This unravelling isn’t necessarily a bad thing. In the long run, the trauma behind the veneer needs resolution. I’ll admit, though, it’s difficult to endure.

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I suspect I have C-PTSD, and this exacerbates my overwhelm, leaving me in a continuous spiral of burnout. I’ve spent a lifetime masking. I also survived 12 years of emotional abuse and gaslighting. It would be more surprising if I didn’t have it.

I’ve never taken medication for my anxiety. It’s always terrified me, so I never even spoke to my GP about it. What was the point? But I’m there now. I’m ready to try anything, because the alternative is to go on until I’m a prisoner in my own home.

I’ve taken the first step to pursue a diagnosis. Given how stretched the NHS mental health service is, it’s bound to take a long time, but medication should be an option in the meantime to bring me some relief.

This path I’m on is meandering, with issues running into each other. I’m walking it with my eyes and mind open, clinging to hope for a better future.

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Whichever name you prefer, they’re soothing to my neurodivergent mind.

Essential for functioning well.

The summer holidays brought chaos, overstimulation and burnout. The loss of routine had a huge impact on me and Little One.

Something I failed to notice while it was happening.

What I Mean by Routine:

• A soft structure that binds the day, creating a sense of security

• Anchors or tether points

• Events that shape the hours, but still allow freedom

• A reason to get dressed and maybe go outside

What I’m Not Talking About:

• Rigid, inflexible plans

• Scheduling hour-by-hour activities

• Utilising all ‘free time’ in a structured way

• Activating my pathological demand avoidance by asking too much of myself

• Leaving no space to breathe

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Routines that work well for me are external and non-negotiable. Things that give shape to the day, but leave room for flexibility.

Some daily structures include meal and bedtime routines. For the most part, these remained the same during the holiday, but on their own, they’re not enough.

The right routine grounds me; it manages my expectations.

Don’t be lulled into thinking I enjoy them all. I loathe the school run; it drains my energy and affects my nervous system.

I need free days too, with plenty of downtime.

Little One attending school enforces a schedule - we have to get up, get dressed, and leave the house. We have typical patterns before and after school. It’s predictable, safe, and comforting.

This only occurred to me yesterday, two days into the new term. I was walking to the car, and I felt… lighter. Something had clicked back into place. I understand this, I know how to function within it.

There’s also the break from caring responsibilities; I’m not diminishing the effect of that!

At the end of the first week, Little One’s behaviour is easier to manage. Meltdowns going to and from school are caused by the transition. Masking at school is another contributor. Overall, they’re brief compared to the summer.

For the last six weeks, our days have veered between being too busy and having no structure at all. Some days, we stayed in pyjamas!

My executive functioning took a serious hit. I didn’t excel in personal care. Basic needs were met - pat on the back, please.

This is all fine and dandy at the weekends. Routine is wonderful, but rigidity isn’t.

This summer, I switched to ‘survival mode’, brain at capacity but full of sludge.

When life is one long weekend, things start to backslide.

The break was our first trial run with a new support system.

We’ve been awarded direct payments from social services to pay a personal assistant (PA) to take Little One out. This meets his social needs and gives me some much-needed respite.

We were at the mercy of the PA’s availability this summer. This meant long gaps between sessions, or no gap at all!

Another mistake was booking too many different activities. He feels safer when he knows what to expect. Returning to a few select places would have made it easier for him.

He made the most of it all, but I imagine his anxiety was screaming; no wonder his behaviour was so terrible.

Rather than live the summer, I just got through it.

I wrote a post in July setting intentions to retain my sanity; those were soon forgotten.

For the next holidays, I want to do more than survive.

I need to find ways to bring the comfort of routine into those chaotic weeks, for both me and my family. Suggestions welcome.

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Mum guilt is pervasive.

Mostly, it proves we’re good mums. We care so much that we feel bad for not being the impossible ‘everything’.

I always wanted kids.

Since identifying as AuDHD, I’ve wondered, would I still have had children if I’d known earlier? If I’d understood my sensory issues, how they conflict with rearing little humans. Would I have marched on regardless?

I think so. On typical parenting pathways, infants and toddlers are the hardest work, but children become increasingly independent as they grow older. While this might bring its own issues, the intensity of caring responsibilities declines over time.

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My daughter was a typical example, a difficult baby, crying continuously. She was a demanding toddler, and I had very little help. As she got older, she became easier to parent. Unbeknownst to me, she was masking her neurodivergence, just as I did.

Her teenage years have been fraught with trauma. She remains loving and undemanding. My guilt kicks in just there. Her little brother needs so much, and she gets less time than she deserves.

The squeaky wheel gets the oil, and all that.

If you went back in time to tell me how difficult parenting our son is, would that have made a difference?

Probably not.

Why? There’s no way I would believe it could be this hard.

He’s autistic and has Down Syndrome. At five years old, he’s still in nappies. His intellectual development is far behind his ‘typically developing’ peers.

He has pathological demand avoidance (PDA) and avoidant/restrictive food intake disorder (ARFID). Asking anything of him results in meltdowns, and he only eats beige, crunchy food.

He’s eaten nothing but veggie stick crisps for days now.

He’s practically non-speaking, using minimal single words, gestures and limited Makaton to communicate; more fuel for his frustration.

Instead of getting easier to parent him, the reverse is true. The older he gets, the more difficult it becomes.

The larger the gap between him and his peers.

The greater the vigilance required from us as parents.

He’s prone to absconding and has no awareness of danger.

He’s destructive, which includes throwing things, usually at us.

In case you missed it, this happened recently:

Noise is a sensory trigger for me. Little One will say ‘Mam’ on repeat, whether he needs me or not. Then there’s the screaming, the shouting, the crash of the thrown toys and drinks.

I’m constantly on guard for flying objects; at least one item per day hits me, usually on the head. Add that to multiple kicks to the face when I change him.

I had a fat lip last week - he headbutted me twice.

I don’t feel safe in my own home, with my own child.

I have PDA too; his constant demands play havoc with my nervous system, as does the need for hypervigilance.

I’m too emotionally dysregulated to co-regulate whenever he needs it.

I’ve been in autistic burnout for the last six years.

I suspect I have C-PTSD, following years in an emotionally abusive relationship and masking my entire life; this amplifies all the distress, frustration and anger to unbearable levels.

I’m bone-wearily exhausted. I carry a heaviness when I move. I ache all over, and sleep is difficult.

I can’t be what either of them needs. Not all the time.

I feel selfish for being so wrapped up in my own feelings that I‘m not always able to help them with theirs.

I feel guilty for being frustrated and angry with Little One.

I feel trapped, and that’s the scariest part.

This is going to get worse, not better. It’s so relentless.

If it keeps getting harder, how do I hold onto hope?

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In the second issue of Alys’ Adventures in AuDHD-Land, we journey into Foodie Forest, where Autistic Alys and ADHD Alys cook up a whirlwind of adventure.

If you missed the first issue, Housework Hollow - you can check it out here.

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I’m going to share the whole zine here, page by page. If you’d like a PDF copy, you can download it for free over on Ko-fi using the button below the zine.

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I'm so angry. I feel like our family has been pushed out to sea on a raft, being thrown around by the waves, with no support.

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This afternoon, I talked to a GP about my 16-year-old daughter’s mental health issues. I’m not going into detail about them here; that’s her story, but I’m convinced there are diagnosable conditions involved, beyond neurodivergence.

Do you know what he's going to do about it? Nothing. Absolutely fuck all.

Why? Because we've arranged a counsellor for her, starting mid-September. A service which we’ll be paying for - not via the NHS.

Apparently, we’ve ticked the box, job done, pat on the back. Also, CAMHS (Child and Adolescent Mental Health Service) aren't keen on dual therapies... thereby stating that by providing her with any treatment, we’re effectively excluding her from accessing NHS mental health assessments.

Do you know why we’re paying for counselling? Because the chances of being successfully referred to CAMHS are minimal, the number of therapy sessions is limited, and the waiting list is too long. Ironic much?

He told me to get back to them if it doesn’t work out with the counsellor, or if she starts self-harming again. Great - so she can be 8-10 weeks further back on the waiting list? Last time she self-harmed, I asked for her to be re-referred, and the same doctor refused. Because we “have a plan for that”.

I pointed out that the counsellor can't make a diagnosis of any mental health issues. He decided that was ok, because he concluded that her problems are ‘trauma-based’, without ever speaking to her.

Oh, and one last little nugget - he took issue with the fact that she's 16 and 2 months, so will soon be coming to the end of CAMHS age remit: that's 18!

Seriously, I just can't. I got off the phone, raged about it to my husband, then cried.

Earlier in the day, I phoned the neurodevelopment team to check her position on the waiting list for her ND assessment. Her application was accepted in March 2024. They're currently working on applications received in August 2021!

At this rate, she might get to the top of the list by March 2028, by which time she’ll be almost 19; but don’t worry, because if you’re already on the list, they’ll still do your assessment after age 18.

In May 2024, my autism assessment application was accepted, with a 22-month wait attached. I was warned off applying for ADHD altogether; unless my symptoms were “incredibly severe,” I wouldn’t even make the list.

Similarly, for me to pursue a diagnosis of C-PTSD means waiting on the ridiculously long Mental Health Team list for assessment, then waiting again for treatment if a diagnosis is forthcoming.

I’ve always appreciated the NHS, but it has serious systemic issues. Really, what use is a free health service if you can’t access help when you need it? I don’t have the answers - but apparently neither do the people running it.

People can’t access the treatment they need without a formal diagnosis. There’s no such thing as “prevention is better than cure” in the mental health service as it stands. It doesn’t end there, I’m certain, but I can only speak to my own experiences, and those of friends and family.

In our experience, the exception to this is the abundance of care we receive for Little One, but wait times often affect these services, too. There have been several long gaps due to staff shortages, which left vital roles empty.

The cherry on today’s cake, however, was the outcome of our recent DLA (disability living allowance) mobility application. Little One meets all criteria for the higher rate, but, true to form, they’ve granted the lower rate. Initially, they refused the care element completely, awarding the higher rate following an appeal. Now, we’re back to appeal again. I guarantee they refuse everything on the first application, as a matter of course. It’s demeaning and belittles our daily struggles.

Going private is the only alternative, something we have to seriously consider - almost £4,000 for my daughter and me to complete ND and mental health assessments.

We might just about find a way; most families can’t. No one should have to choose between a kitchen and basic health care.

Without it, we’re left to drift further out, no rescue in sight.

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Note: I recognise that neurodivergence isn’t technically a mental health issue; however, in the UK, especially for children and adolescents, assessments are handled by the mental health service.

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They say, defiantly: had I not been forced into this, I would have chosen it myself.

When Little One was 9 months old, I started exploring Down Syndrome support groups on social media. I remember commenting on a photo of a cute toddler and introducing myself. Her mother replied enthusiastically. She told me that we were ‘the lucky ones'. As if having a child with Down Syndrome were an unexpected prize no one knew they were looking for.

I didn't feel lucky. I still don't.

All that comment did was add shame to the grief I felt for the child I thought I would have.

I love him, absolutely. To magically delete his Down Syndrome or autism would change him. I would never choose that. But if you'd asked me when I was pregnant, I would have chosen the neurotypical option without hesitation.

That’s my guilt-laden honesty.

Parenting him is relentless. I’m grateful he’s healthy and happy. I love him with all my heart, but I worry about him and am equally exhausted by him at all times.

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I feel the same about calling ADHD or autism ‘superpowers’.

It negates the difficult experiences most neurodivergent people have daily. It glosses over the daily struggles most of us face.

Sure, individual traits can be called superpowers - I’ve done that myself:

But the whole package is more complex - nuanced.

I feel lucky that I’ve identified my AuDHD, late as that was; I no longer feel like a loser, a fuck up. I allow myself kindness.

Am I happy to be autistic and have ADHD? That’s an easy no.

I don’t know life any other way, but I’m willing to bet it would have been easier without this particular wiring. Eighteen months in, I’ve barely scratched the surface of how it’s shaped my life.

Understandably, then, it irks me when people present the idea of neurodivergence as anything other than complex.

Both my son’s diagnoses and my late discovery of AuDHD have taught me more about myself and society than I ever imagined. The lessons were hard won, but I value them deeply. Life is complicated enough; toxic positivity only adds another layer, invalidating feelings and fuelling negative self-talk.

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This is going to be short - consider that the first pin prick of light in a murky world!

Burnout feels like my brain is numb and two sizes too big for my head.

I struggle to produce useful or coherent thoughts, let alone string a full sentence together.

Feel free to tell me in the comments if this made any sense!

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I didn’t want to focus on the burn of burnout, though - I thought I’d try to find the small joys:

1. At our second hospital appointment in two days for Little One, the overflow of parked cars had reached the entrance road; my hope of finding a space was slim. We have a ‘Blue Badge’ (a disabled parking badge) for Little One, and lo and behold, as we turned onto the site, an empty disabled space, as close to the entrance as you could want.

2. I’ve watched the first 2.5 seasons of ‘The Great British Sewing Bee’. It’s calming, funny and full of creativity.

3. Little One recognised my husband’s workplace when we drove past, shouting ‘Mad’ (his current name for Daddy 🤣); this was a first.

4. Hubby is cooking a veggie stir-fry with salmon and noodles for dinner tonight - yummy!

5. Feeling so shitty has given me time to reconsider previous decisions and thoughts: whether to pursue an official ADHD diagnosis, in order to try medication, and that it’s very likely I also have C-PTSD following a 12-year abusive relationship and masking my entire life. That might not sound like a positive, but to me, anything that leads to growth is a plus. Both these things drastically affect my life. As I learn more about myself, new things keep coming to light.

6. A batch of brownies wasn’t the right depth, so hubby brought the whole tray home!

7. I’ve been getting on the mat for my yin yoga - not moving much 🤣 but it’s the thought (and mind-body connection) that counts.

8. I haven’t actually killed anyone (I’m looking at you, small child!) so there’s that.

9. Little One gave me a couple of lovely cuddles and kisses; granted, he also stamped on my face, screamed at every request and almost threw us both down the stairs - but lets focus on the cuddles!

10. I’ve consumed a ridiculous amount of tea 😜🍵 probably not good for me, but I love it!

And that’s your lot!

Ten small joys - more than I anticipated. I should do this more often - I’d prefer to be known for gratitude rather than grouchiness. I feel lighter having listed them.

Don’t worry, I’m sure my usual exasperation will make a comeback in the next post! I wouldn’t want to let you down.

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This doesn’t fit into any niche. I’m feeling compelled to write more often these days, and this is a messy unloading of feelings. Perhaps I shouldn’t publish everything I write? If the compulsion continues, I may post them to my profile without burdening your inbox. We’ll see.

The last few weeks, I’ve been so caught up in my head that I almost have no time for living. Swept away by Substack, held in the kind of stasis reserved for the fear of missing out. Going for a walk, yoga, life… can all wait. I am consumed.

This isn’t the first time. Social media has always cast a spell on me, especially when I join a new platform. The trouble is, I don’t pay attention, I pretend it’s not happening, as my world closes in around me. I only notice when I’m drowning. I always push it to the extreme. By which time my insides are strung so tightly I can barely breathe.

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My combined internal and external environments have brought me to a crisis point. Several factors in the last few days have triggered me to sit up and pay attention to this:

• I deleted the Substack app, intending to make any access to the platform intentional and conscious, not just because I was holding my phone

• My refurbished laptop arrived, allowing me access to Substack and writing around the house, without my phone

• My recent reach and engagement for both notes and posts have plummeted. I appear to have entered the Substack algorithm void. I try not to obsess over numbers, but I’ve been sucked in and wondering why

• I’ve been experimenting with different styles of notes, with my usual haphazard content, to be met only by crickets and tumbleweed

• Then there was the paid subscriber glitch on many of our dashboards

• After a five day streak of the worst behaviour, Little One was out with his PA today, and try as I might, I couldn’t ‘force’ any productivity from my brain

I realised I don’t even remember the last time I ‘did nothing’. My mind felt like it was on fire as I kept trying to force it to ‘make the best use of time’. Logically, I know that resting is a good use of time. But logic doesn’t always enter into it when time to myself is so limited.

After a couple of hours, I finally gave in. I turned on the TV and sat motionless (well, as motionless as possible for an AuDHD lass) watching The Great British Sewing Bee. Then I took the dogs for a walk - that wasn’t such a great idea, because the heat was stifling.

I’ve been in burnout for the last five years, so the energy and chaos of hyperfixation can feel like a relief. Until it doesn’t.

If I keep pushing, I will break.

I’m often teetering precariously at the edge, wondering what will tip me over it.

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Yesterday, I wrote about a successful incidence of emotional co-regulation as an AuDHD mum with ND kids.

This success was nowhere to be found today.

If I had more energy, I would have searched under the furniture and in the drawers (where things go to hide). But I didn’t. I’m bone tired; my whole body feels heavy, my eyes are sore, and my head has that familiar ring of overstimulation.

I felt it as soon as I woke up, despite sleeping longer than usual.

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Little One had been an angel for his dad all morning, until I walked in, then it was all screams, demands and flying toys.

The teenager was having a hard time with trauma-related issues and needed my attention; another demand on my already overloaded senses.

In an attempt to harness the energy from yesterday’s post, we went for a family picnic.

I drove; traffic was heavy, and we arrived to find our destination full of people (always a joy), so we walked to find a clear spot.

We spread the picnic blanket and our food. Little One stayed in his pushchair because he runs away at the earliest sign of freedom, which he did twice after we let him out, then had a tantrum at being put back in.

The teenager chatted happily during lunch but resumed being gloomy immediately afterwards.

We promised the park to Little One, but upon arrival, it was heaving with people and a dog barking incessantly, so we walked through without stopping.

It was hot. The line was too long at the ice cream shop to bother. We were all grumpy and disappointed.

When we got home, I went to get changed and collapsed on the bed for ten minutes, trying to recover.

Now, Little One is in bed. And I say, thank fuck for that.

Some days, emotional co-regulation is a miracle. Today wasn’t one of them.

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Check out the first issue of my new Zine, ‘Alys’ Adventures in AuDHD-Land’ in the post below. It highlights the push-pull relationship between Autistic Alys and ADHD Alys regarding household chores.

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Little One has been stroppier than usual over the past couple of days.

In our house, we call this ‘being a poo head’!

He’s overtired after back-to-back days out packed with activities, topped off with sensory overload and masking with his PA. We had to take the available days, and now we’re paying the price.

There have been meltdowns. Not just his!

I find emotional regulation difficult, and as a parent, it falls to me to help my children regulate their own. That can be tricky. Sometimes we spark off each other, feeding a spiral.

I have to step back. Find a way to calm everyone down.

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My teenage daughter is, well, a teenager. She’s also ND, highly sensitive, and easily overwhelmed. I avoid talking to her too much early in the day (in teenage language, that means before 2 pm), giving her space to get over the morning grumps.

When she’s upset, I try my best to hold space for her to just ‘be’. Let her talk when she wants, without interruption. Not trying to ‘solve’ the problem for her - this is harder than it sounds (especially for a people pleaser). But this is what helps, so I bite my tongue. Mostly. At least, I try.

Sometimes she wants a hug. Other times, she’s too overstimulated and prefers space. I respect both. I ask her what she needs, and provide it if I can.

Sometimes, all Little One needs is redirection. He often misses internal cues like hunger or thirst; sitting him down with his tablet and a snack can be the answer.

When he gets upset, a tight hug normally calms him, even when I feel overstimulated. I’m not a perfect parent. Far from it, but I can take a deep breath and go again.

Sometimes these tactics fail.

Today was one of those days. We were already wound tight since yesterday. I knew it would take something different to shift the mood.

Since he was born, I’ve carried him in various types of soft-structured carriers. Although he’s five now, he’s small, still less than 45 lbs.

So, this morning, I put him on my back, grabbed the dogs’ leads, and we went out for a walk. The close contact with my body and the rhythm of walking calmed him instantly. He was asleep within ten minutes. At the very least, it gave me 45 peaceful minutes, and him a nap.

It did more than that, though. It reset the whole day. He was calmer, happier and able to focus on play.

Sometimes, it’s the small things - a change of scene, showing up even when I’d rather hide. It’s not always easy or possible; sometimes I have to accept the bad days or ask for help.

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Check out the first issue of my new Zine, ‘Alys’ Adventures in AuDHD-Land’ in the post below. It highlights the push-pull relationship between Autistic Alys and ADHD Alys regarding household chores.

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My ‘to-do’ list makes me feel physically uncomfortable (understatement much!); I didn’t understand why until I discovered the link between autism and pathological demand avoidance (PDA) after my late identification as AuDHD.

I associated it with failing, being unable to cope with simple things without an internal protest.

PDA is a profile within the autism spectrum, characterised by the avoidance of demands.

The intensity of reactions varies between individuals, and demands can be external (someone else initiating the demand, e.g. a family member asking you to close the door) or internal (self-imposed expectations, e.g. knowing you ‘should’ take a shower).

I’m sharing how PDA feels for me.

I won’t be discussing the science or theories: I highly recommend visiting for a wealth of information.

Our autistic son displays PDA traits, and it was her article ‘The Ladder and the Lion: A Gentle Guide to Polyvagal Theory for Parents of PDA Children’ that helped me truly understand what happens internally when demands are placed on us.

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So, how does it feel?

Think dread. Pit of the stomach, sickening, visceral dread.

Pounding heart, a flush of foreboding.

That’s how PDA manifests in my body.

Sounds dramatic about hanging the washing on the line and feeding the guinea pigs, right?

The moment I think I ’should’ or ‘must’ do something, no matter how trivial, WHAM!

For the first 41 years of life, I had no idea why I felt this way. It added to my self-depreciation. Thoughts of ‘why can’t I cope with day-to-day life?’.

I’d wake up in the morning and enjoy that first moment of ignorant bliss. Then consider the day’s agenda, and, smack… There it is!

Internal demands affect me more than external ones. This reflects my rule-bound, people-pleasing, high-masking nature. PDA conflicts with my need to appease.

For most of my life, I rode the wave of dread and ‘pushed through’ to get stuff done. Even internal demands align with external expectations for the most part: showering, being presentable, feeding your kids!

Since learning why I feel this way, I’ve learned to manage the internal pressure, which has helped bring some ease.

Like most people, I have numerous daily tasks. Routine jobs that don’t require planning; there’s no need to think about them beforehand, but I used to.

That ‘to-do’ list is usually 90% housekeeping, family logistics, and parenting.

When I wake up these days, I don’t ask myself what’s on the list. I concentrate on getting up, taking care of Little One and having a cup of tea.

I might have taken it too far, as I now sometimes forget appointments - I must remember to check my diary, though I haven’t missed any yet

Achieving this required being mindful, identifying what aggravated the PDA, and actively practising to eliminate it. It took time, but it’s introduced an element of softness to my mornings.

During the day, when PDA arises, I play with it; I tell myself, ‘it’s ok, I don’t have to do that. No one gets hurt if I don’t make the bed.’ Once I remove ‘must’ or ‘should’, I’m usually more willing to get on with it!

This doesn’t work for appointments or non-negotiables, but it lightens the overall load.

OCD and PDA don’t make for happy bedmates. OCD, in cahoots with my sensory sensitivities, demands perfection. That I perform tasks quickly - even immediately, and it craves routine, or else it increases my anxiety. OCD generates internal demands, triggering the PDA.

I’ve worked on loosening the grip of my OCD. That wasn’t easy, but I achieved a modicum of release through counselling. It’s not perfect, but it’s more comfortable.

Understanding was key; letting myself be messy around the edges helped, like:

• Not washing the cup immediately after use

• Staying in pyjamas when we’re not leaving the house

• Storing deliveries out of sight to open later

I stopped demanding ‘perfect’ output and embraced ‘lived-in’ comfort.

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Check out the first issue of my new Zine, ‘Alys’ Adventures in AuDHD-Land’ in the post below. It highlights the push-pull relationship between Autistic Alys and ADHD Alys regarding household chores.

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I’ve never been able to get into podcasts, though I didn’t question why, until this week, when fellow AuDHDer launched her new podcast, ‘Neurocomplex Conversations’. I was excited to hear what she had to say, but I hit play and instantly hit the same wall.

My husband occasionally plays episodes of ‘The Peter Attia Drive’ in the car. I always find myself getting stuck on a sentence early on, trying to understand its significance. Meanwhile, they’re still talking, and I’m left behind.

My husband has ADHD. He’s a baker and listens to various podcasts and audiobooks while working. He has at least 17 thoughts at once, but still manages to take in some of the content.

My mind’s just as busy, but I think we process sound in completely different ways.

In conversation, I have a delay in processing words. I hear them clearly, but the meaning lags, like a toddler dragging his feet. If I know the context and I’m familiar with the person, this isn’t as pronounced. But catch me off guard, and I might stare at you blankly for a while, the word ‘buffering’ flickering in my eyes.

I’ve often asked someone to repeat themselves, only to get it just as they start to speak. It’s embarrassing, but it’s just how my brain works. It’s not an intelligence issue - just a processing one.

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To exacerbate the problem, noise is my biggest sensory trigger. I quickly become overstimulated in loud environments. People talking while I’m trying to think, my son stuck on repeat with ‘Mam’, the TV chattering in the background - all surefire ways to short-circuit my brain.

Music can be an exception, BUT only when I choose to listen. I can be having a blast, listening to all my favourites, and suddenly it becomes too much. My neighbour blaring endless One Direction playlists when I’m gardening can push me over the edge (I’m not 100% sure that one’s a sensory issue, to be honest!)

If I want to learn about something, I read. It’s how my brain processes and synthesises information best.

I watched numerous YouTube videos on being AuDHD in the early days of identification. I couldn’t find personal written accounts, just clinical trait lists, so I turned to YouTube for something more relatable. The videos sufficed, but self-reflection has been taken to another level by reading posts on Substack.

I appreciate that the opposite is true for many, and audio works better than text. I was pleased when the text-to-speech feature was enabled on my posts this week for wider accessibility. I’ve toyed with the idea of a short episode podcast myself, because despite the audio processing issues, I can certainly talk!

For now, I’ll stick to writing and reading, my comfort zone, while celebrating all our different ways of processing the world. I’ll be restacking the hell out of Kira’s podcast, even if I can’t take it in myself… though I just found out there’s a transcript available on the desktop version of Substack, which is a game-changer!

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Check out the first issue of my new Zine, ‘Alys’ Adventures in AuDHD-Land’ in the post below. It highlights the push-pull relationship between Autistic Alys and ADHD Alys regarding household chores.

All images created using AI, based on my ideas and prompts.

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