I’m not sure exactly when I learned how to dissociate. It isn’t an ability I was born with. My Mum tells me how she’d walk me through shopping centres or supermarkets as a toddler. There would be a pause in which my sensory system would try to absorb this towering world of legs, shelves, voices and strip lighting. The effort froze me. “Excuse me,” passersby would say to Mum. “Your child’s going blue. Is she still breathing?”

“Oh, just you wait a second” Mum would tell them, as my breath finally found its exit as a series of screams – prolonged as the checkout queues. “Breathing now. See?”

It was books that helped me to create a space in my head that I could retreat to in the event of such sensory onslaughts. I have practiced this for as long as I can remember. The bell would ring at the end of my school lessons and thirty chairs would scrape backwards at once. I would pick a classmate to follow so I didn’t get lost. A focal point in the distance, like you might look for to prevent sea sickness. There were so many people on the staircases it was like being swept away in a wave of elbows and backpacks, warm starchy school shirts pressing against me from all sides. As the scream began to swell in my chest, I would pull a book from my bag and let the flow of bodies carry me, while my head checked out completely. It would take effort, but I could then funnel my attention along each line of text until my situational awareness became fuzzy and dream-like, just enough for the book-world to replace it.

I don’t remember anyone commenting on my habit of reading in corridors. I also read with a book hidden on my lap in some lessons, in secret corners of the school library, on a quiet bench in a local churchyard on the days when I could escape school grounds at lunch time without being caught. I felt invisible to everyone in those moments. Why would anyone see me? I wasn’t there. At least not in any sense that felt real.

Books were also my rehearsal space. I barely spoke at school. My first teachers asked my parents if I knew how to speak.

“Oh, she must be shy” was their conclusion when my parents assured them that I spoke all the time at home. Eventually, I was saying a few words to keep people at arm’s length, but I was nearly an adult before I trusted myself to improvise. Before then many of my sentences were stolen, often from books, and had to be repeated silently over and over, as I imagined each possibility of how others might react. Only when a sentence was well practiced enough to feel automatic did I dare use it.

Now, when I read fiction (which I do a lot) I prefer to read about people and places as different from me as possible. This is how I expand my perspective and find temporary relief from my own ruminating concerns. Not back then. Then, I mostly read badly written teen fiction, books about girls my age, navigating other school environments – often American high schools, girls whose voices I could borrow if I needed to. None of those girls were very much like me, but I felt like they should be, so I kept reading. If I could only find myself on a page one day – perhaps everything would start to make sense.

____________________________________________________________________________

My 11-year-old son J is draped off the side of his bed, a sea of books sprawled on the floor in front of him. He can’t yet read the words. Mostly, he looks at the pictures and talks to himself about them in a language that only he understands.

When J communicates with me it is in single words with occasional support from the symbols on his AAC device. He signs ‘yes’ and ‘no’ with his hands. He can sometimes piece language together into a 2- or 3-word utterance if he’s on good form, “have… some… toast”. Otherwise, he will use his “phrasebook” language – echolalic scripts he has picked up and uses associatively in similar contexts. For example, he recently climbed a tree and shouted, “Stand upon my shoulders. Tell me what you see!” I know the Rag n Bone man song so I could respond to his intended meaning, “Yes, wow! You are a giant!” It helps if you know the context! Sometimes the context is a song but maybe 80% of the time, it’s a book. The storybooks he loves have always, quite literally, been his phrasebooks.

J’s self-talk language is likely the same as the phrasebook language, but when he’s talking to himself, he removes the consonants and hums the intonation of each phrase with a kind of “eeeee” sound. Occasionally I can pick out the odd word but mostly I can’t. It is disguised language rather than a different language. He does this for much of the day and then for a long time in his bed as he falls asleep. I imagine he is playing out scenes in his mind, while humming their accompanying soundtrack. He does the same when looking at his books and, despite having a short attention span for most tasks, he can chat away in “eeeee” language while looking at books for a remarkably long time. He does this with an intensity of focus unmatched in any other part of his life.

This is one way J calms when his emotions become heightened or when his sensory system is overwhelmed. He will run to his room to encircle himself in picture books. Or when we are out, it’s the car that he’ll run back to, spreading the pages across the back seat. His books are his hiding place and his rehearsal space, safe from the possibility of his inner world being perceived before he’s ready, even when people are watching.

____________________________________________________________________________

The other day, J’s hyper-focus had held him in a picture book for nearly an hour. I asked if he wanted me to read it to him. “Buzz off” he replied (from Room on the broom) and shooed me out of his room. So, I sat downstairs and picked up my own book which had just arrived in the post. “The scale of the spectrum” by Joanna Grace. This is a wonderful book which immediately caught my own hyper-focus. I read it from cover to cover in just two sittings.

Grace’s book was written as a response to the recent publication in the Lancet from a group of researchers who call for a separate diagnosis of “profound autism” for autistic people like J who have very high support needs. This is an idea that a lot of people agree with. I have heard the same argument many times from exhausted parents of children with high support needs who feel their child is worlds away from that “superpower” kind of autism. I also hear it sometimes from autistic adults who want to make it clear that they are highly capable in many ways, not like those autistic people. It saddens me to see this. Not because J and I are the same, but because we are connected. Yet, this feels like the subtler argument to be making. The differences are just so much easier for most people to see than the connections. Dividing up the autism spectrum is just common sense. Isn’t it?

Joanna Grace would say no, but she recognises the challenge of convincing anyone of that through argument alone. Hers is a position arrived at through lived experience and relationships. So instead, her book is a series of paired stories, like the stories I presented above about J and me. A story written by an autistic person with what might be called lower support needs, and another about an autistic person with higher support needs. It is left to the reader to see the connections between these stories – the things the two people have in common even though they might seem very different on the surface.

This debate has intensified on social media recently, following an interview with Uta Frith which was published in the TES, claiming the autism spectrum has now expanded to the point of meaninglessness. Frith does not believe women like me should be called autistic. We are just anxious and hypersensitive. Real autism means stilted conversation and not understanding humour. In most cases it should also mean being male.

I was interested to read this because Uta Frith is where my understanding of autism began. Her work was foundational to the idea that autism is a neurological difference rather than a consequence of cold detached mothers as was previously believed by many. She had an important role in pioneering the concept of the spectrum which she is now questioning. I read her book when I was an undergraduate psychology student in 2001. I remember a friend testing me on the content when revising for our exams. Back then, Frith’s book caused no controversy and was simply what everyone thought autism was. It was not a book that I ever considered looking for myself in.

Collective thinking around autism has moved on significantly in the last thirty years. Since the publication of Frith’s book in 1989, the neurodiversity movement has happened, the internet has happened, and thankfully neurotypical researchers are no longer the only voices in this conversation. Many more women, girls, and gender non-conforming people have now been identified as autistic. It is now increasingly accepted that there is no real gender difference in autism prevalence. It is only that past research focused on a particular and stereotypically male presentation. Even J, who would still likely have been diagnosed autistic in the 1980s or 1990s - They were wrong about him too. He has an imagination and empathy and a sense of humour. We were all wrong about a lot of things back then.

Joanna Grace describes this beautifully in her book, “Our shared understanding is like a flowing river. Anyone who claims to have arrived, who plants a flag in the sand and calls it knowledge ends up left behind as the river moves on…. Arguing over who is ahead or behind only drains energy that could be spent swimming.” The important thing is that we keep moving, keep listening, keep learning.

____________________________________________________________________________

There are many practical reasons why dividing autistic people into sub-categories is problematic. The concept of a spectrum has been helpful in emphasising the diversity of autistic experience. However, it would be a mistake to assume we can position every autistic person on a linear scale from very autistic to only a little bit autistic. While it is true that some autistic people always need more support than others, many have uneven profiles of ability - strengths in some areas and higher support needs in others. Capacity can vary considerably day to day, can change over time, and in many cases can be difficult to assess accurately.

However, my own reason for wanting to see solidarity and unity across this spectrum is because my experience tells me that each autistic person is a uniquely angled window into multi-faceted whole of which I am a part. Each individual window might give you a different perspective, but the more windows you encounter overall, the more of that shared reality is illuminated. As Joanna Grace shows us through the stories in her book, one autistic person’s experience can shine unexpected light on the experience of another. This is often true, even when at first glance there appear to be too many differences for comparison to be possible.

I now have friends with autistic children who are struggling with the sensory and social hell of mainstream school in the same way I once did. The differences between my friends’ children and J can feel stark in many ways, particularly in areas such as fluency of speech, language processing or academic ability, all of which are seen as indicators of status and worth in the society we live in. However, the truth is our shared conscious experience of being human flows much deeper than all those things, and there are many other ways in which we can understand each other.

I feel that perceived proximity to children like J can have potential benefits for my friends’ autistic children. For example, someone like J often displays visibly what they might only experience internally. Perhaps my friend’s child finds a particular sensory environment just as aversive as J does, but it is their reaction that is more likely to be missed because they are working so hard to mask their discomfort.

It is important that masking is not a barrier to autistic people accessing the support they need. If those who can mask are seen as merely having a quirky autistic-like “personality” rather than a genuine disability, they could lose legal rights to accommodations in the workplace, or in school. Much of the online outrage at Frith’s recent comments is rooted in a specific fear of such a consequence, a fear that is not unrealistic in our current political climate.

____________________________________________________________________________

Among parents whose children are more like J, I have more often heard arguments in favour of the “profound autism” category. To some extent I can relate to their reasoning. We are caring for children who have traditionally been segregated in separate schools and institutions. This means when we are out in public, people are not used to seeing children like ours. They may stare at us or judge us. They might feel awkward or afraid when our children make noises or move their bodies in ways they don’t understand. We love our children immensely, and they bring us a lot of joy, but many of us feel isolated because so much of the world is inaccessible to our families. It can often feel like few people have any understanding of what our life can be like, especially on the hard days.

If my only knowledge of autism was based on my daily life with J, and on TikTok content from the rainbow-haired autistic self-advocates, I would likely agree that my child is rarely represented in such content, that those TikTokers have likely never met anyone like J, and what they are talking about is something entirely different– which is exactly what a lot of parents are saying.

However, the reason I am not arguing for J to be “profoundly autistic” is partly because I believe it’s already obvious that I have a significantly disabled child who needs 24-hour support. Anyone can see this within a couple of minutes of meeting him. I also don’t think there is any shorthand label that would reduce the need for the lengthy explanations that I am now well practiced at providing whenever I introduce him.

My position is also because I do not feel quantity of support should be our only concern here. Describing needs in terms of “high support” or “low support” is difficult to avoid, but it still suggests a binary and a linearity. It is also a distraction from a much more important question, which is what quality of support are we talking about here? Is this support that accepts J as he is, that embraces the way he moves through the world as something natural to him, rather than something that can be changed or fixed? Is this support than honours his autonomy, his interests, his sensory needs, his communication preferences?

Thanks to the neurodiversity movement, there are now autistic people who are beginning to experience a level of affirmation and acceptance which, while still often insufficient, has yet to be extended to people like J at all in most contexts. Remaining in proximity to such people feels like J’s best hope that this acceptance might one day include him too, as it continues to expand.

This is where the paradigm shift has not yet happened for many. I don’t know if I would be there myself if it weren’t for my relationship with J and how much of myself I have always seen in him. If my understanding of autism began with Uta Frith’s book, for a while that is where it stayed.

It was not until years later, when I was studying autism at PhD level, that I discovered people who were challenging the medical model of disability. When I first read about neurodiversity, I immediately applied this to all those clever people with “Asperger syndrome.” Maybe this is just a “difference?” It felt radical to say so. To talk about there being positives. I even published an article about it. It still hadn’t fully sunk in for me that autistic people with the very highest support needs also live beautiful lives. Lives which can look very different, but which are still equally valuable and worthy of embracing and celebrating. Of course, it wasn’t that I actively thought that was untrue. It was more that I had failed to even think about it. I also failed to understand that affirming a person’s autistic identity does not require a denial of their disability.

I was so wrong about all of that. Shamefully wrong. A lot of people have been wrong about autism for a very long time. It feels important that we keep saying so and trying to be better. Again, Joanna Grace says it best here, “This is a position I could live and die by. I would be willing to risk a flag in the sand of the flow of understanding to say that humans are of equal value to one another.” I might still be wrong about all kinds of things, but this at least, feels like the place we need to start from.

One of the most helpful things I know about my son J is that he is a gestalt language processor (GLP). As such he has always expressed himself differently. When he was younger, he gained language first in long chunks, exactly as he’d heard them (sometimes called echolalia). Over time he broke these phrases down into smaller, combinable chunks, then into single words. At every stage he used his language meaningfully, but he was nearly eight years old when he began to build his own sentences, using grammar for the first time. This remains difficult for him. His words have lost the flow that the echoes used to lend them. In between long periods of non-speaking, he continues to grapple with this.

It is easy to see how non-speakers or those who communicate differently are at risk of exclusion from the activity of shared understanding and meaning making which is so important for human connection. When we communicate, we are sharing what we know, what we feel, how we perceive things, what we desire. We do harm if we assume that unless a person has fluent language, they cannot know anything worth sharing, or that what they do share lacks meaning. As the philosopher Miranda Fricker says in her book Epistemic Injustice, to discount a person’s expression of what they know is “to wrong them in their capacity as a giver of knowledge, and thus in a capacity essential to human value.”

Epistemology: Theories of knowledge and how we know what we know.

What we are permitted to claim as knowledge can depend on which academic discipline or professional context we are speaking within. Or as Wittgenstein saw it, our words are differently valid or useful depending on the conventions of the “language game” we are trying to play.

My understanding of J has been greatly improved by Marge Blanc’s (2012) qualitative research on GLP. This research is seen as groundbreaking by many who recognise its findings in the children they parent or support. However, it also challenges the prevailing understanding within some disciplines. It is perhaps unsurprising, therefore, that we are now seeing backlash from those who feel its conclusions do not fit with the ways they are accustomed to speaking about things. We see this in mainstream linguistics which refers to echolalia only as pathology and a failure of “typical” language development. In mainstream psychology which sees autistic communication as primarily reflecting a deficit in social understanding at a cognitive level. And, in behaviourism which insists that autistic language is “verbal behaviour” which can be shaped and improved through operant conditioning, much like training an animal.

My immediate and emotional reaction when confronted with such naysayers is indignation, because GLP is a developmental process I have personally witnessed in my child and increasingly hear about in others. There are some interesting individual differences in the way this can look, but the phenomenon remains recognisable. I know this. As surely as I know my own breath, my own child, as surely as I can know anything.

This is the point where it stops making sense to speak about what we can know only in terms of abstract language games or the established rules of different academic disciplines. Because the shock of being disbelieved about our own experiences is visceral and piercing. It is as if someone has scooped up all the everyday pity and condescension and sharpened it. I am revealing my privilege here in the fact that I am relatively unused to this feeling. There is still horror for me in this realisation, that my own knowledge, and that of many autistic people and GLPs and their families. It doesn’t actually count.

Epistemic injustice: When some people’s knowing and ways of knowing count more than others. Linked to testimonial injustice – when some people are less likely to be believed because of who they are.

GLPs are often autistic, and recent critique of GLP has focused heavily on its incompatibility with traditional understandings of autism. As such it is perhaps best seen as one manifestation of a wider crisis around our collective understanding of what it means to be autistic.

We now have a well-established body of research around autism, going back decades. This is mostly research which autistic people had no role in creating or evaluating, the conclusions of which rest solely on the interpretations of neurotypical researchers. For example, the view that autistic children lack empathy or motivation to connect with others because they do not understand that other people have minds - perceiving others merely as “bags of skin draped over chairs and stuffed into pieces of cloth” as developmental psychologist Alison Gopnik once described it. Or the view that because autistic people may misunderstand some socially constructed contexts, the details they attend to must be random - lacking any sense of context at all.

These are interpretations which most autistic people see as deeply offensive and inaccurate. Yet all remain pervasive interpretations within the services and supports that families like mine are offered.

Hermeneutics – Theories of interpretation or the art of understanding and sense making. The fundamental activity of all human minds as we seek to live meaningful lives. As the writer Richard Flanagan puts it, “Experience is but a moment. Making sense of that moment is a life.”

Hermeneutic injustice: When certain groups of people lack the language or frameworks to interpret and make sense of their own experiences due to the historic exclusion of such groups from the creation of that language and those frameworks.

In the case of GLP, there are many parents who know their child is developing language differently, but it is hard for them to interpret that knowledge because they lack a framework with which to do that. The language they may have been given such as “echolalia” often doesn’t feel right. I hadn’t heard of GLP when J was younger. I remember saying to a speech therapist when he was a preschooler, “It can’t be echolalia because he uses it so meaningfully. I don’t know what it is!”

Another example of hermeneutic injustice would be the many undiagnosed autistic people who find themselves thinking some version of, “but I can’t be autistic because I don’t like trains, I have plenty of empathy, and yet… I still feel different in important ways that I’ve been given no language for.”

I see this in J too. I have tried to tell him he is autistic, but he receives mixed messages from the world about what that means. I was recently talking to him about dreams. I’ve often wondered what he dreams about because he’s never had the language to tell me. I say to him, “Sometimes I have dreams that are like big adventures, and when I wake up, I feel so surprised to be back in my bed. Does that happen to you?” He gives me a high five to signal “yes” and I say, “see, your brain is amazing!” He seems unsure about this, takes my hand and places it on his head. “Crazy” he says.

Autistic people are often exposed to well-meaning advice but have limited access to collective frameworks which actually resonate with their experiences and help to make sense of them. The impact of this on an already marginalised population is not trivial. Having your instincts about yourself repeatedly overwritten by the judgments and misinterpretations of others is likely to impact upon your sense of who you are, leading to self-doubt and difficulty trusting your own perceptions, as many autistic people attest to.

The paradigm shift we need here is already beginning to happen, thanks largely to the neurodiversity movement. There are now theories emerging from within that, such as monotropism and the double empathy problem, which fit better with reported lived experiences of being autistic.

This movement is often underestimated by those paying insufficient attention to it. It is still seen by many as just a sweet attempt to say nicer things about autistic people - “Oh poor thing, but he is very good at jigsaw puzzles!” Or as a denial of the challenges that autistic people face - “Your autism is a superpower!” But neurodiversity affirming practice is never achieved through a pretence at positivity within existing frameworks. The neurodiversity movement is attempting something more ambitious than that, which is to communicate that the way autistic people understand themselves is fundamentally different from many of the narratives reported in journals and confidently spouted by professionals. And it is the frameworks themselves which need to change.

Social injustice: The unequal treatment of a group of people within society, which results in one group being at a disadvantage. Frequently linked to systemic injustice as we see it manifested within all our institutions.

Caring for a disabled child involves navigating endless systems. Everything we ever need to do has its own convoluted procedure, which most people don’t even know about because systems tend to be more streamlined for those they were actually designed for, which is never us. We fill in endless paperwork in the holy name of evidence. We watch our children and instead of enjoying the moment, we find ourselves mentally rehearsing how we might describe this moment to professionals, worrying what they might think, how they might judge us.

We listen to explanations of protocols so we can understand the hoops we must therefore jump through. We make many ‘to do’ lists and feel guilt over their non-completion. All of this has significant cost for families in time, in peace of mind, often in money too. But we parents have to follow official recommendations, don’t we? Otherwise we’ll be susceptible to any old snake oil we find on the internet, because how will we know what is true?

I am all for the truth, but if the truth sets us free, I struggle to feel much freedom in any of this. There is a widespread assumption that we must control and standardise everything so as to reproduce the same truth in each instance. This may work in the natural sciences, but it feels impossible when supporting children because every child is themselves a unique being and a new context.

As the philosopher John Caputo puts it, “Interpretation is always about context. Looking for a rule to follow is always the height of irresponsibility. I was just following orders is a lamentable excuse.” Caputo addresses accusations of relativism (the idea that if we deny absolute truth then anything goes) by arguing that truth remains important, but the kind of truth we experience is dynamic and must be recreated and rediscovered within each context. He gives the example of West Side Story being a retelling of Romeo and Juliet. In an important sense, the two stories contain the same themes and tell the same truth – and yet the truth of the original play has also been entirely remade through its production in a new form.

I would argue, so it is with any child-led practice. Truth reveals itself naturally and collaboratively in a way that is unique to that child. When we compare our experiences with others, we often find the same underlying truths reoccurring. Much of that truth we can learn from, and some of it can be captured by research. However, what we learn from others will only help us if we first recontextualise it and make it our own, for this child, for this situation.

Qualitative research can be useful to us here, aiming as it does to closely study lived experience and find those common themes across many examples, without losing sight of the individual differences. However, there can be no justice until a marker of validity for any kind of research becomes – Who is this research about and what do they think about it? Do its conclusions help or hinder their ability to interpret and express what they already know of themselves?

I still believe research has a role in understanding and supporting children like J. The advancement of our collective knowledge requires the pursuit of truth, as has always been the goal of research. However, the advancement of our collective goodness, our collective wisdom- that endeavour requires both truth and justice – neither of which can be meaningfully attained in the absence of the other.

STAGE 1 (When J was 2 years old)

I had heard of echolalia, but J’s language never matched what I had been told about that. Echolalia is commonly (and wrongly) described as being meaningless parroting without understanding, and it was certainly never like that with J. When J first learned to speak, he was memorising hundreds of phrases and matching them perfectly to different contexts. It was like visiting a country where you don’t speak the language and getting by on what you can remember from a phrasebook. It still astounds me, the feat of memory and associative thinking it must have taken for J to do this so accurately while still only a toddler.

Two-year-old J would run over to me saying “sit on my lap?” before clambering on to me, cupping my face in his hands and pressing his forehead firmly against mine as if he were trying to channel the whole world through me. “Sit on my lap” was the first thing that made me think he might be autistic. Pronoun reversal is known to be common in young autistic children. I remember reading about this reflecting a difficulty with “perspective taking” or “theory of mind”, a lack of understanding of the relation between self and others. This idea is based on myths about autistic people that have only recently started to be questioned (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6959478/). It now seems that autistic people have been misunderstood by almost everyone and in almost every way for decades.

The real explanation for J’s pronoun reversal is nothing to do with his relational understanding and everything to do with the way he was processing language. “Sit on my lap” is a string of sounds that he’d heard me say many times in this context. To him this phrase meant everything about being held; the heft of his body flopped across my chest, the fake flowery scent of laundry powder on my clothing, his sense of proprioceptive input as I squeezed him tight, helping him to feel present within his body, and present with me. There is nothing special about pronouns. J was not yet aware that there were any separate words in that phrase at all. Gestalt language processors in stages 1 and 2 are not yet processing language in words. A gestalt is a glued together chunk of language with its own meaning, independent from the words it contains. J had no reason to say it in any other way than exactly how he’d always heard it.

Many of J’s gestalts have been from the people around him, but his favourites tend to be from story books. Even now it seems like his mental architecture is mostly built from the books he loves. His favourite author is Julia Donaldson and when he was younger, he would quote her all the time. His hat would fall off in the park and he would say, “the wind blew so wildly it blew off her hat” (Room on the broom). He would take his clothes off for his bath and say, “I’m the coldest giant in town” (The smartest giant in town). I would tell him it’s time to go home and he would add “to the family tree” (Stick man).

Even now when J is frightened and unable to access more flexible language, he sometimes tells me this by saying – “Take that mask off Bernard.” This is from a book – “Alfie gives a hand” by Shirley Hughes. In the book, a little boy called Bernard wears a tiger mask at a party and frightens a little girl. This phrase is J’s way of telling me he feels frightened, just like the girl in the story.

To interpret a gestalt phrase as the sum of the words it contains is to misunderstand it. J’s gestalts were meaningful in a different way. They were not the sum of their words, instead they were the sum of all the sensory and emotional elements the phrase had become associated with in J’s mind. This gives gestalts a much deeper meaning than their literal meaning. It just might take some effort for the listener to figure that out.

STAGE 2 (When J was 3-6 years old)

If you’ve heard that autistic children can’t do pretend play or don’t have an imagination, that is certainly not true of J. This is yet another way J has dispelled common misconceptions. J lives almost permanently in storybook and role play world.

To use the phrasebook analogy, language phrasebooks are often helpfully organised into the contexts you will need the phrases for: The pharmacy, the restaurant, the airport etc. Similarly, J was most comfortable in contexts that he knew he had some scripts for, so we would role play in these worlds.

Often, he would start by bouncing on my knee pretending to be on a bus and he would then choose which world we would visit. We weren’t following the exact same scripts each time. By age 3, J was in stage 2, so his scripts were becoming more flexible. Different role play worlds could overlap and usually did. A script could be stolen from one context and adapted to fit another. Tigers would not only come to tea at our house but would also jump on the train without a ticket and eat all the snacks on the snack trolley or chase us down the beach and steal our ice cream.

J’s language would match this. He could say things like “The tiger ate all the…” from the Tiger who came to Tea book and add script from the new context, “ice cream in the cafe”. Once he had memorised hundreds of phrases, he could see that many of them start the same way or contain the same parts. This meant he could see where they could be broken apart, and then he could start mixing and matching, which is stage 2.

When in Stage 2, J’s language sounded the most complex and appropriate it has ever sounded. Our role play world was filled with familiar stories and songs and puppet characters. All were mixed and matched by loose association rather than by any sequence or logic. The worlds we visited would frequently slide over and into each other. Often it seemed like J was playing all the parts and going to all the places at once. We might be pretending to be on the train to Grandad’s house and then J would tell me we “landed on the moon,” showing me our train had turned, dream-like, into a space rocket without me having noticed.

J’s play was joyful and creative and often featured his passion for food. The moon was always a place for picnics thanks to the story “Whatever next” by Jill Murphy. Every day with J felt like a tea party in Wonderland. The only problem was, J couldn’t seem to transfer the way he talked and played with me to any other setting I tried to leave him in. Nobody else knew the scripts. Even if I tried to tell people, it never seemed to work in quite the same way outside of our bubble.

At Stage 2, J convinced many professionals that his language was better than it was, especially if they saw him talking to me. This made it difficult to get appropriate support for him. One speech therapist who visited our house commented that J was using advanced grammar. This goes to the heart of what wasn’t understood. J was not self-generating any grammar at all. Young children usually make grammatical errors. “I runned around,” etc. J never did this. His grammar always sounded perfect because it had all been pre-made for him. It was all echoed from somewhere else.

To reach self-generated grammar, J first needed to tear apart all his scripts and demolish the entire storybook Wonderland he had spent years creating. This was not an easy process for him. Even now, he is still tripping himself up over all that rubble. Yet, when I hear him trying to build with it; word + word + word, I can see why this needed to happen. Beautiful as they were, J’s scripts were never flexible enough to take him as far as he wanted to go, and I think he knew that.

STAGE 3 (When J was 6-8 years old)

Stage 3 has been described as the magic stage. The single word stage. It can be hard to understand how talking in single words is progress from talking in sentences. As an observer, it doesn’t feel like progress.

For J, the shift from scripting to talking in single words happened a few months before his sixth birthday. He first stopped speaking entirely for a few weeks, which I was concerned about. Then when his speech returned, it was exclusively single words. This coincided with some difficult experiences in our life as a family, so I was thinking, is this trauma? Is this regression? But if so, what was he regressing to? He had never been like this. I could remember him using some single word labels for picture books as a baby, but he had quickly moved on to using longer scripts and preferring story books. I couldn’t remember any previous time when he had spoken only in single words throughout the day.

Around the same time, J also started vocal stimming. He would make seemingly random noises with the intonation of speech. Sometimes I wondered if these were his original scripts, now disguised and jumbled, with all the sounds mixed around. It seemed to be something he was doing for himself, because he often did this alone, and he would switch to a single word when trying to communicate with me. I could see the stimming had a positive and regulating purpose for him, but I wondered if it was also more than that, perhaps containing some coded meaning I couldn’t understand.

The impact of this change in J on the way he was perceived by others was dramatic. Whereas we’d previously had professionals underestimate his support needs because he spoke so well. Now, all people could see was a child who was engaged in baby-like babbling most of time and only occasionally using single words. Friends and family were shocked by the change in him and didn’t know what to say to me. I had my first experiences of strangers looking uncomfortable around J when we were out, avoiding looking at us, talking over J’s head, assuming he wouldn’t understand if they spoke to him directly. One speech therapist who assessed J while still in stage 3 said she couldn’t work with him because she had too little experience of children with “such severe language delay”. I felt like I suddenly had a completely different child.

Alexandria Zachos in her Meaningful Speech course describes stage 3 as being very short. Once children break their gestalts down, first into smaller chunks and then into single words, they soon want to combine their single words to build their own original language. Gestalts then gradually decrease in parallel with an increase in self-generated language. The stage 3 phase of mostly speaking in single words is very short. In this regard, J has been unusual because his stage 3 lasted for over two years.

Stage 3 is indeed magic. It is a paradigm shift and a different way of thinking about the relationship between language and referential concepts. Sadly, I didn’t understand this at the time and my grief and fear obscured any sense of magic for me. I wanted to scream at everyone around me, J is the same child he has always been. He still understands everything I say to him. He is still capable of the same creativity and enthusiasm that he demonstrated when he was talking in sentences. I know what this looks like, but it is not what it seems!

As I reflected on this over time, I asked myself the obvious question. What am I afraid J looks like? Have I ever seen an autistic person stimming in public and made assumptions about their capabilities? Have I ever judged the quality of a person’s inner world by how articulately they can communicate that? I might be able to say, “J used to talk, so this is not what it seems.” But what if J had never spoken? Would that change my beliefs about him? There is no reason why it should. J has shown me this again and again, the assumptions made about autistic people are so often entirely wrong. It is never what it seems.

STAGE 4 (J is 8 years old)

The loss of J’s scripted world felt like an earthquake. The way it is for Alice, when she finally sees the true nature of Wonderland and it all falls down on her like a house of cards. At least, it appeared that way to me at first. Over time I began to realise J’s scripts were still there in his mind. They hadn’t collapsed. It was more like he was dismantling them gradually every time he searched for his words. Sometimes I would see evidence of this. E.g one time after swimming he pulled me out of the pool and said “frog” which he then self-corrected to “shower.” The script he was thinking of was “a shower for the frog” from Room on the broom, but he had accidentally isolated the wrong word. Breaking all his scripts into words took J a long time, but perhaps this shouldn’t be surprising. He had a lot of scripts to sift through.

It was Marge Blanc who showed me how to help J combine his single words to create his own original language (which is stage 4). When I took language samples, I realised I was still hearing a little stage 2 (it hadn’t all been lost), and his stage 3 was mostly nouns. It’s impossible to build sentences with just nouns. You need all types of words, so this was our starting point. There are grammar charts (the DST and DSS) that give guidance on the types of word combinations to model for stage 4 (See Developmental Sentences Scoring here – https://communicationdevelopmentcenter.com/asha-bundle).

I tried to follow all that. As we played, whenever J said a single word, I would expand on it by adding another word, sometimes two other words to show him how easy that is to do. Gradually J started doing the same and forming his own short word combinations in an increasing variety of ways. This was a big adjustment for J. His gestalts had been long sentences, filled with intonation and layers of meaning. That is what the adults around him sound like and this is what he wants to sound like. But that isn’t how original language begins. That can only begin one word at a time, slowly, imperfectly.

J’s stage 4 language can sound something like this:

“I…be… want… lunch”.

“Have …eat… chips”.

“Gruffalo… be… feel… hungry”

This is very different from the way J’s scripts used to sound. The grammar is often incorrect. He now hesitates between each word and his intonation is flat. When I first heard this, I realised I had never heard J sound like that before. I have met toddlers who sound a little like that, but not J. When J was a toddler, he skipped all that and went straight to reciting entire books.

For J, this is uncharted territory, and the journey has not been easy. Fluency has been a challenge because J no longer has echoes in his head to guide him. Retrieval has been a challenge because he is still searching for each word from an extensive bank of scripts in his memory. J reached stage 4 a year ago, but after the initial excitement of that, we increasingly began to encounter obstacles. J experienced multiple phases of stuttering, frustration, dysregulation, some long retreats into silence. We are now exploring AAC to take the pressure off him.

Yet, he remains stage 4 in his head. Now if he uses a single word, it is often the start of a sentence he is thinking but can’t quite get out, “Got…”, “Have…” “What…”. “Can…”

For me, this last year, especially the periods of silence, has sometimes felt the way the start of stage 3 felt all over again, as if everything J and I had worked so hard to build up together has all collapsed on top of us. However, the important difference between then and now is that now I know about gestalt language processing. Now the magic of what J has achieved so far is no longer hidden from me. Now I can stop comparing J to children who are developing in a different way entirely. Now, even when there are setbacks, I am at least looking at how far J has progressed along the pathway he is actually on, the one less travelled by, and that has made ALL the difference.

I hear the clanking of chains before I see him, hovering at my window in his Victorian nightgown, his blueish face framed by white hair and moonlight.  He doesn’t look real enough to frighten me, but I sit up in bed to get a clearer look.  It’s his voice that startles me, low and reverberating, rattling the glass of water at my bedside, “I am the ghost of Autism’s past.”   I know I must be dreaming, but now I am afraid. 

My fingernails dig into the mattress, resisting the invisible pull that has me sliding to the foot of the bed.  “But I’ve read about autism’s past already.  Those early journal papers, case studies of autistic boys. The 1940s, institutions, eugenics.  Children like mine, routinely condemned with the swish of a pen…”  I hesitate as my mind conjures a mother.  She has gathered herself despite her uncertainty - neatly dressed, hands folded, politely deferential to the man with the white coat, the official documents, the false assurances.  I daren’t look at her.  Can’t bring myself to picture her face, her eyes. Please no, don’t make me look there. 

The ghost sighs, impatient with me, “That is not how this works.  You’ve read Dickens?  Or at least watched the Muppets version?  I can show you only that which falls within your lifetime.  You see these chains that bind me?  Their weight is that of your past, confining me as much as you. We cannot travel beyond that.” 

I close my eyes and feel movement, tumbling, through air as thick as water.  Then a pause.  A tentative stillness.  Echoes of half-suppressed coughs, the shuffling of feet and paper.  When I look, the ghost and I are standing at the back of a lecture theatre.  The girl at the desk beside us seems oblivious to our presence.  She has pink hair, too much eyeliner and my face.  Her chin rests wearily on her fist.  Probably hungover.   The presentation overhead shows a triangle - The triad of impairments - Social communication, social interaction, imagination.

 “Do you remember what you were thinking?” asks the ghost.  I look at my former self and I know immediately.  She’s wondering how it might feel to have no imagination.  Her father and those questions he saved for long car journeys, “Can you stop thinking for a whole minute? Try it. Ha! You’re thinking about not thinking, aren’t you?”  It’s a little like that.  She’s imagining not imagining. Stripping her thoughts of colour and texture, flattening them out. Trying to perceive the world simply, literally, without embellishment.  She is finding this impossible.  Who would she be without imagination? Would she still be human?  “Dehumanising thoughts,” whispers the ghost.  “And where does that lead?”

The world shifts, pivots on itself, the way it does in dreams, and the ghost and I are following my former self into a house.  She’s slightly older now, trying to figure out how to be an adult, a graduate, maybe even a professional, a prospect that still terrifies her.  She carries herself awkwardly, smiles uneasily, but she’s trying. The pink hair is gone now, the hangovers less frequent.  I remember this house well.  One of the largest in the area.  We walk in through the backdoor, like the nanny and the housekeeper, no-one ever knocks.  We soon find him in the playroom.  He was always a beautiful child, huge dark eyes, looks about four years old here.  He’s sitting with his mother, lining up his Thomas trains diagonally across the rug.  There’s a serenity to his focus, tilting his head and examining each train with his peripheral vision, adjusting its position before continuing.  His mother looks embarrassed to have been caught helping him, passing him trains from the box, colluding with the lining up.  She would never have let me do that.  

“It’s okay to play the way he wants to play. Don’t worry.”

“She has no consciousness of you,” the ghost reminds me, “You are not of this time.”

I watch my former self, silent in the doorway, fearful of intruding further on this moment between mother and son. She’s ruined it already. She knows that. She’s unsure of what to say. 

They were advertising for Psychology students.  40 hours a week is a lot to cover.  They needed a team.  I had never heard of ABA therapy, but I was interested in autism, I enjoyed working with children.  Just a few hours a week, they said.  Training provided.  It wasn’t too intense at first.  Showing the kid how to wave, how to clap, then celebrating exuberantly with toys and praise.  As time went on, I became less comfortable. The tasks we were told to take him through were getting ever longer, broken down into many steps before he could earn his reward.  Hours at a table, all self-chosen activity redirected back again.  I would think of the children I’d babysat for as a teenager, letting them boss me around, dress me up, cover me in paint and glitter, make me run around the house with them on my back.  That had been a lot more fun.  Why did this have to be so different? 

 “You knew this felt wrong,” the ghost hisses in my ear, “You should have left sooner.” 

The trains are all laid out now, a perfect line of symmetry through the centre of the rug.  A journey of changing features, one train flowing to the next as naturally as footsteps.  The boy is still studying each one in turn, enthralled by their detail, by all he associates with them, all they make him feel. The researchers were wrong.  He is imagining.  Does imagination only count when it’s externalised?  Showcased for others as art or narrative, projected onto toys and acted out? Does it have no value before then?  A person’s inner world, the essence of their humanity, does that need to be proven before it’s respected?  Before it’s even believed in?

His mother cradles a train in her palm, flicking the wheels with her thumb, watching them spin.  She doesn’t want these people traipsing through her house all week.  Today she wishes only to sit beside her child and help him sort his toys.  It’s her fear that pulls her away from these instincts.  What options does she have? She wants him to fit the world because she knows the world won’t change for him.  The ground will never rise for him.  The air won’t hold him up.  He will only fall,

and fall

and fall…

The thought of falling hits my muscles all at once and they contract, jerking me awake, returning me to my bed, alone now.

The following night I await the ghost of autism’s present.  The present must be better, surely?  I’m thankful to be raising my own autistic child in the age of neurodiversity.  We now live in a world with ‘autism friendly’ cinema showings, quiet hours in shopping centres, sensory rooms in airports.  Autistic people are starting to be listened to, thanks to social media.  Public understanding is increasing, accommodations are being made.

The ghost appears without warning or fanfare, easy to miss if I hadn’t been looking.  They sit in a low squat on my windowsill, looking towards me but not quite at me.  Their figure is slight with soft curves and boyish features.  Short hair - a fading purple dye just visible at the tips, a crumpled T-shirt displaying a slogan in bright yellow lettering, something about beautiful brains.  They look so comfortable that it takes me a minute to notice their ankles, bound with the same chains as the ghost that came before.   I walk over voluntarily, curious now, reaching out to touch them, wondering if my hand will go straight through, like the ghosts in cartoons.  They flinch and jump backwards from the window, dragging me out along with them. I look down and I realise - I’m tangled in those chains. 

The air outside feels cool, the breeze strong.  I wait for the ground to solidify beneath me, for my vision to clear so I can see where I am…  We are watching a version of myself again.  Not young this time, more like my current self… But not quite.  She is standing on a cliff, watching the way the sea hurls itself violently, pointlessly, repeatedly at rocks.  I remember this.  Of course I do. “This isn’t the present,” I tell the ghost, “This was four years ago.”

“I am the ghost of the present paradigm,” they explain, “my reach extends beyond mere moments.”

Mere moments.  This one was a low point.  We had just come out of another covid lockdown. My autistic five-year-old had lasted in mainstream school for three months before they said he couldn’t stay. He was now at home with no school, no groups to attend, nothing to do, everything closed.  He had stopped speaking beyond the occasional single word.  I didn’t feel I was being much help to him.  I was struggling to get through a day, even an hour, without crying.  My husband had suggested I go out.  I had nowhere to go, so I just kept driving.  Two hours to the coast.  The highest cliff I could find.  I wasn’t thinking of jumping.  Only needing to remind myself that I still wanted to live.  To feel that instinctive pull away from the edge, to experience my aliveness as an active choice, not just a default state.  

The problem of the neurodiversity paradigm is not its ideals but its failure to deliver what it promises within our current structures.  Too many autistic people and their families remain isolated and unsupported.  And most are now exhausted too, bashing their heads against walls which sometimes crack a little, sometimes bend, but never actually seem to break. 

All those meetings, all that paperwork.  He doesn’t even understand that. Can’t even do this.  Even when staff try hard, he still can’t…  Yes, we’re sorry, we have to phrase this negatively, it’s the only way to meet thresholds, to get funding, we know you understand. Maybe we can refer you here, maybe there, long waiting list but still, maybe.  Write another report, another assessment, find him a special place, staffed by special people who know special things – things we don’t, presumably. Not that we don’t want him, bless him, but… no, no resources here, targets to meet, other children to think of, you know how it is.

The neurodiversity movement presses loud against my ears, holding me to account, pushing insistently at the limits of the possible.  Surely, we can stretch those boundaries of central tendency to include more people.  It’s okay to be different. Your child has the right to access the classroom along with everyone else. You just need to fight harder!

Schools seem happy to change their image, to brand themselves inclusive, to make wall displays about diversity, to decorate them with rainbows.  Happy to make minor adjustments to what they already do, a visual timetable on the wall, that one kid at the back with the ear defenders and the fidget toy. Reasonable adjustments can make a difference, but they can’t be all we’re fighting for.  Systems built around an average still create outliers by design.  It will stay like this until we question why children need to be sorted, measured, and funnelled through childhood in this way at all. Forced to spend all day at desks, under artificial lights, working through standardised curriculum, preparing for standardised tests.  Relentlessly compared and ranked against each other, preparing for an economy that only does the same.  Many cling to the edges for years, only to discover they are the low scorers, the opposite end of the distribution, the necessary failures that make the high scores worth something.  And what about my child?  I can’t even get him in the building.  No room for him on the scale at all.  He falls right off the end. 

Falls,                                                                                          

and falls

and falls.

She doesn’t want to fall.  We watch her stepping away from the edge, following the narrow footpath down, heading for the beach.

“Your despair didn’t help,” says the ghost. “It weighed you down and affected those around you. You think you’re fighting against the world, but you need to fight yourself first.  You know that don’t you?  It’s why you’re here.”

We watch the former me as she reaches the sand and pulls off her shoes.  She’s brought no towel with her, no swimsuit. She doesn’t care. There’s no one around.  She strips to her underwear and runs into the waves.  It’s September, the tail end of summer, but the sea is always cold in England.  As the water reaches her chest, the shock grips her, making her gasp, like the first breath of life.

I peer at the bedroom walls, alert for movement, suspicious of shadows.  “Ghost of the future?”  I call out, “Are you here?  With all your grim warnings to throw at me? Go on then.  May as well get it over with.  There’s nothing you can show me that I don’t already fear. Bring it on. I’m sure I deserve it. To atone for all I’ve done, for all I wanted to do and couldn’t.  Not my baby though.  He deserves none of this.  You think you can tell me his future? I dare you to try.  Too many people have tried that already.  I refuse to believe a word of it.”

A mist descends on the windowsill.  As it clears, I see this ghost is small, a little bird, no chains, just feathers.  Feathers dropping like leaves across every surface, as she flaps around the room.  Occasionally she lands back on the windowsill, hops in circles a few times, then launches herself up again.  As she flies, she sings.  Sings for all that’s not yet happened, all that might still be. Sings the tune without the words and never stops at all.  She darts through the open window and hovers outside, still singing, compelling me to follow her.  Can I follow?  Would the ground rise to meet me?  Would the air hold me up?

At that moment, the boundaries between inside and outside vanish, along with the ceiling. The sky sprawls itself open above us, stretching itself out to a far-flung horizon, to distant hills, a dawning sun.  Our feet find themselves in a forest.  The bird is beside me, perched on a low branch, quiet now, head tucked inside one wing, preening her feathers.  The sounds of children echo around us.  To my left, a small boy stands at a mud kitchen, filling a baking tray with fistfuls of moss.  To my right, a hammock holds two little girls, hair and limbs tangling together as they fall into each other, trying not to topple out.  In the centre, a canopy, strung up with bunting, and beneath that a campfire. There he is, my boy, older and taller than I’ve seen him, moving with confidence, more comfortable in his body. He pushes a marshmallow on to a stick and hands it to a friend. He is known and loved and free here – the way he needs to be.  Beyond the campfire, there is something for everyone.  Blanketed dens with cushions and fairy lights, a workshop, an art studio, a puppet theatre, a library, storytellers with bags of sensory props, dancers draped in coloured ribbons.  Further down the hill, an apple orchard, fields with grazing animals, raised beds full of vegetables, blackberries in the hedgerows.  Strong coffee for the parents, who can stay all day if they want to.  Everyone is welcome here, regardless of neurotype. There is no average, no normal, no standard path.  The interests and needs of every child are honoured here, included, designed around.

Is it naïve of me to want this?  The world can feel so cruel, so broken. How did we become so stuck?  Because we couldn’t imagine a different future?  But who would we be without imagination?  Would we still be human?  

My sensory seeking boy finds a patch of wild garlic, he gathers it up, pressing it against his nose. A few leaves for his mouth and some in his pockets for later.  He lifts his head, eyes tracking the bird as she flits between the trees ahead.  He follows her to an oak tree, swinging himself into the branches with ease. He always had a talent for that.  He climbs as high as he wants to, nobody saying he can’t.  Ghosts watch him from above, faint shadows in the flickering leaf-light.  The chains at their feet merge into the mist - fading, drifting, then dissipating, as the air is warmed by the rising day.

To love is to be vulnerable, to risk suffering and uncertainty. The world promises safety to no one, however much they are loved.  And yet we love anyway, because that is who we are.  I feel this most acutely now I’m a parent, but I have known it all my life, and I learned it first from Elsie…

When I was two years old, Elsie the toy rabbit went everywhere with me.  Her body was soft and brown, except for her long arms and legs which were a silky purple and closer to human than rabbit.  I would hold her by her hands and by shifting her weight from side to side, make her legs move as if she were walking.  Or she would sit, flopped against me as I recited my storybooks from memory, usually stories about rabbits, a persistent interest for me at that time, “It is said that the effect of eating too much lettuce is soporific.” Beatrix Potter was never one to talk down to children, and that was fine with me.  I didn’t need to understand all of it.  It was enough to imagine those water-colour rabbits wandering around the countryside, dressed in their old-fashioned clothes, enjoying fancy tea parties in their burrows.  I had no doubt real rabbits did all those things.  Of course, they did.  But only when no-one was watching.  It had always seemed to me, from very young, that there were two worlds – The outer world that was obvious to everyone, and the inner world, which never properly matched the outer world and so had to stay hidden.

When I told my father it was Elsie’s birthday, he gave me a cake, put some candles in and lit them. Then he sat down opposite me with his instant coffee and started reading his newspaper.  I knew the script for birthdays.  I sang to Elsie, then lowered her over the cake so she could blow out her candles…  My mother (who is now divorced from my father) still flinches at the next part of the story, “What was he thinking? Why wasn’t he watching you?”  I can’t answer that. All I know for sure is he leapt from his seat to protect me from the consequences.  Elsie’s face fizzed with steam as it hit the water in the kitchen sink, my wide eyes glimpsing the horror for the briefest of seconds, the charred fur slipping from her cheek, exposing the bruise of red and blue stuffing beneath.  My father was quick, swooping across her with a long white bandage, concealing the damage and assuring me she would make a full recovery.  It took my mother a few nights to reconstruct Elsie’s face.  She couldn’t find any brown fur, so she used black fur instead.  This left Elsie with a face that failed to match the rest of her body, and a new bewildered expression, with misshapen eyes, nose, and mouth all fashioned for her out of old scraps of felt.  To me she was as perfect as she had ever been.

All this meant for much of my childhood I dragged around a toy rabbit that other children would laugh at.  Why are you playing with that ugly old thing?  Why does it look like that?  I would respond by hanging my head and clutching Elsie closer to me.  I was an anxious child and rarely spoke outside my home.  Yet at night I would speak to Elsie, whispering into her long ears, telling her how lovely and beautiful she was.  Those other children didn’t know her the way I did.  They would never understand her, just as they would never understand me.

I was around six years old when I was given The Velveteen Rabbit - Margery Williams’ classic story about a toy rabbit, so loved by a child that it is worn out, with bits dropping off it, and through this experience becomes Real, “Generally by the time you are Real, most of your hair has been loved off, and you get loose in the joints and very shabby.”   I can now read this book as a metaphor for the vulnerability we all experience when we let ourselves be known and loved, yet to six-year-old me it was a book about another Elsie and I read it endlessly, “Because when you are Real you can never be ugly, except to those who don’t understand.”

Many years later, I am mother to J, my beautiful autistic boy whose disability is obvious to anyone who sees him struggling to communicate, needing to touch everything in sight, stimming loudly and wildly.  I sometimes find myself thinking about that velveteen rabbit, seen by other rabbits as not quite real, as not like them, and I wonder what it is about difference that makes people so uncomfortable? 

I witness this discomfort infrequently enough for it to be a jolt, snatching my breath and ejecting me from the moment I was in, yet often enough for it to land me in familiar territory. I recognise the awkward shuffling, the unspoken judgment, the eyes that widen then flit the other way.  The little girl in me feels exposed by this -  They have seen what wasn’t safe to reveal.  She wants to run. To bring her baby home, to wrap him up in blankets and hold him close, to tell him he is lovely and beautiful, that nobody knows him like she does. To feel his breath, warm against her cheek as he whispers his favourite scripts to her, to see his smile as she whispers them back.   Non-verbal they call him.  But what do they know? They will never understand.

Yet I stand my ground, because I know the cost of hiding.  All the meaningful relationships I now have were formed through allowing ourselves to be seen as we are, through understanding each other more deeply over time.  I want this for my child too. It is okay to want this - Although, that isn’t the message parents always get. There are professional industries that capitalise on the fear around autistic difference, promising to mould and bribe a child into meeting external expectations, promising an easier life.  But who is that easier for?  When an autistic person continually masks who they are or hides themselves away to make others more comfortable, they are broken by this, becoming ever more isolated and exhausted. In J’s case, I don’t believe he has that option even if he wanted it.  His body is often at the edge of his control and sometimes beyond it. He can only move, feel and be as he is.  

Compelling autistic people into invisibility, either through masking or through segregation, is also a profound loss to everyone else.  There are real friendships never being made. Passions that are never shared. Creativity that is never seen. Damaging assumptions about what it means to be autistic that are never challenged. Narrow conceptions of what it is to be human that are never expanded.  We are all diminished by this.

Connecting with someone different to you can feel scary.  When someone looks to me to help them interact with J, I’ll be grateful they asked, but I can give no guarantee that their experience will be free from uncertainty and awkwardness.  This is no reason not to try.  J needs human connection as much as anyone else. It means a lot to him if you achieve that, even for a moment, so this is worth leaving your comfort zone for.  As the most well-known advocate of vulnerability says about this, “There is no courage without uncertainty, risk, and emotional exposure.”  I am sure Brené Brown is right about this, but it must also be acknowledged that the risks she refers to are not the same for everyone. 

Parents can worry about taking their children places when they hear, “Of course, everyone’s welcome here, but can you make them be quiet and sit still?”  And I’ve heard many autistic adults say they feel a constant message of, “Just be yourself… But not like that!”  Those who don’t understand are numerous, and many wilfully so.  The risks to an autistic person of being their real self are considerable, for some people in some situations, even dangerous.   The onus cannot all be on autistic people to be brave and vulnerable and forever explaining themselves.  We need to make the world a safer place for all humans to be who they are, a place where we all present ourselves honestly, where everyone is included, where we all take the time to view each other with openness and kindness. 

So, if you’re looking for J and me, you will find us right here, out in the world with everyone else. This life we’re patching together might seem different, but that doesn’t make it ugly.  There is no need for you to look away.  Like any love when it is real, ours might look imperfect, home-made, improvised.  This is its beauty.