Already Whole - an essay on 'treating' autism

"I wonder what it means to me, and my family, to live in a world filled with others who see such an integral part of us as a disease which needs to be cured"

I am going a little off-piste today, inspired by

Ruth Allen

to begin seeing Substack as my own, personal mini-press, and by my time learning from

Cody Cook-Parrott

on their ‘Writing the Personal’ course, I wanted to share a personal essay with you today. I hope it serves you, but please do tread carefully.

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---

When I was 18 I moved away to university to study Biology. I went to quite a fancy, old-hat university and I really struggled to find my place there¹. Being undiagnosed autistic made my time as an undergraduate incredibly difficult and this lostness was just one small part of it. As I fought to find meaning in myself and in the place I found myself in, I ended up at an interview to be a volunteer friend² of a young local, autistic boy.

The interview was at his family home and so I somehow traveled out of the university bubble, into the ‘real world’. I’d be lying if I said I remembered what the house looked like, whether it was a row of terraces or, perhaps, a semi-detached. I’d by lying if I tried to paint you a picture of that, but I do remember finding it hard to get to. I remember worrying about how I would get there regularly, should I be successful. This is just one of many opportunities I had wanted and dreamt of where travel soon became a looming problem in my mind. It would take me a further 14 years to realise it was the public transport system I struggled with and that it was because I was neurodivergent, not just a huge failure.

A quick google search, the words to which were extracted from the depths of my memory, tells me that the role I was interviewing for, was to be part of The Son-Rise program³. I must admit that, prior to my own diagnosis in November 2022, I had completely forgotten about this entire experience. But since finding out that I am autistic, since finding out my eldest baby is autistic, and since learning more about what autism is, from people who are actually autistic, I haven’t been able to get it out of my head. The memory has been following me around for over a year, bothering me in moments which were meant to be peaceful. I hope to extract it here for us both, so I can lay out the issues and see them more clearly for myself, whilst also offering it to you, as witness.

***

The interview began with me watching a video of the founders, Barry & Samahria Lyte Kaufman struggle to parent their son, Raun after he was diagnosed with ‘a severe and incurable case of Autism’. I cry writing that. It hurts. I had no understanding of what autism was then and yet seeing stills of that video, some 15 years after watching it, still make me cry. I can remember watching it with such painful clarity and I cannot even explain why. I do not remember seeing my younger, toddler self in the clips of Raun flapping his hands and not hugging his mother, yet the video has left such an imprint on me, the hurt is visceral.

Following the video, I was shown the boy’s ‘play room’. It was an observation room, really, and we - myself and his mother - were the observers. He sat there on his own, playing, an unaware subject of our intrigue. You see, the room had been partitioned by a two-way mirror. So the boy was playing in his room, seemingly alone and completely unaware that we were watching him from the other side. Like in detective movies where the detainee is spilling his confession out to his mirrored self whilst a collection of people watch him from the other side. Like a zoo animal except you can’t see the spectators ogling. It’s not just about the morality of being watched without consent, though that is a huge part of it.

Once in the room, the huge mirror felt oppressive. The purpose of the room, as described by the Son-Rise Program organisers is to provide ‘a low-stimulus, distraction-free playroom… so the autistic person (child or adult) can feel secure and in control of the over-stimulation’ and yet my memory of that room is anything but. I remember the lighting being so incredibly bright that it hurt, no doubt magnified by the huge mirror which consumed one entire wall. I remember there being an overwhelming amount of ‘stuff’ - large play structures and sensory toys which had spilled out across the entire floor - that it felt overwhelming. I remember the floor being padded, soft, to give the feeling as if one might be locked inside a padded cell. A feeling which was not lessened by the knowledge that I was being watched, in secret, and that the door could only be locked on the outside.

***

As part of the interview I had play with this little boy, whilst being observed by his mother and the senior ‘volunteer friend’. Kind of like when you interview to be a waitress at a restaurant, a job title which supported me through university and single motherhood, and you have to do a trial shift first. But instead of trying not to break plates or pour gravy on anyone, you’re trying to interact with a child who doesn’t have a clue who you are, whilst his mother hides behind a pretend mirror. I wonder, now, how many people had been interviewed. How many strangers had that small child had to welcome into his home to play with him? And how was that at all conducive to supporting his autistic needs?

I had been coached, prior to playing with him - I do not recall being properly introduced, just plopped into his safe, play space with little introduction - that I was to mirror everything he did. I was to mirror his noises and his body movements, like a projector, playing back to him his most recent actions. I was also to choose the same toys as him and to play and interact with them in the exact same way he was. Reading the promotional material for the program now, I am unsure if this was an overexaggerated attempt of parallel play⁴ but, either way, I remember it feeling incredibly wrong. And pointless. I remember sitting there, in that creepy room which felt like it had been ripped from some dystopian novel - all bright colours and fake, smiling faces - and wondering how any of this was going to help me connect with and get to know this boy whom I was supposed to offer my friendship.

Following the ‘play date’, I had a one-to-one interview with the child’s mother. We sat around her small kitchen table, whilst she shared with me the intricate details of this boys restricted diet⁵ and her strong beliefs that processed foods, vaccinations, microwaves and phones were what was contributing to the development of autism in children across the globe. As a biology undergrad I was highly skeptical about most of what she shared, but I never really questioned her view of autism as a disease. Nor the methods she was enacting to cure it in her son. I can see her so clearly in my mind, sat at her table discussing heating tomato soup on the stove so as not to fill it with damaging micro-waves. I can see how desperate she was for an answer. How desperate she was for her son to be different. I can hold my own, beautifully different and wonderful children and it hurts to think about.

***

The Son-Rise Program claims to ‘help you to bring your child as far across the bridge from Autism to recovery as possible’ and states that they have seen children:

• Learn to speak, even if they’ve never spoken.

• Experience real happiness, satisfaction, and love, even if they seem frustrated or combative right now.

• Have deep, meaningful, caring relationships with others, even though they may have appeared disconnected for years.

• Have fun, reciprocal conversations, even if they have a history of rigid communication.

• Make close friends, even if they don’t start with the interest or the tools to do so.

What do I feel when I read that?

What do I feel when I allow this memory to wash over me?

Sadness, anger, hurt.

I wonder what happened to that little boy, and to his mother, who so desperately wanted him to be ‘whole’. I wonder where he is now, if he was ever ‘fully recovered’, if it brought him happiness and peace. If it brought her comfort. If it was worth the thousands and thousands of pounds she must surely have spent to attend the Start-Up program in the U.S. for her to be taught how to fix her son or the money it cost to kit her living room out into a child-sized prison.

I wonder what it means to me, and my family, to live in a world filled with others who see such an integral part of us as a disease which needs to be cured. I wonder what this has done to us - the damage and the hurt - across the generations. The health visitor and GP telling me to lock my two-year old in their bedroom when they had meltdowns. To use two baby-gates stacked atop one another if I really needed. To not pay them any attention. My childhood memories are filled with me screaming, desperately trying to escape the room I had been locked in. This is the place I go to in inner-child meditations, terrified and alone and imprisoned. Much like that small boy in his padded, toy-filled cell.

I wonder what it means to me for my happiness to not be viewed as real, for my relationships not to be viewed as deep or meaningful and for my communication to be viewed as rigid. I wonder how that impacts how others see me. I carry the weight of that with me every single day. With the friendship broken because they viewed my words as aggression. To the taxi driver who misunderstood a request and took me the wrong way. I walk through this world mostly feeling like an alien. I have no easier a time trying to understand neurotypical people than they do with me and yet, always, the expectation is that it is me that is wrong. Disordered.

Since receiving my diagnosis I have often wondered how I am meant to exist here. Or how I can make space for my children and their needs. How we can build safe communities which have space for us all in all of our glorious difference. Even creating my own organisation and my own community space⁶ has been fraught with misunderstanding and ableist pressures. It is exhausting and hard and, much like feminist movements need the active participation and understanding of men, we desperately need more neurotypicals to take the time to hear our words and see our difference as just that. Because we are already healed. We are already whole. And we are not a disease to be cured but a group of people in desperate need of acknowledgment and understanding.

Until next time,

little Zoe, barefoot and climbing

1. As it turns out, I didn’t have a place there and I moved after my second year, graduating from The University of York - which really wasn’t that much better but it was a semi-acceptable train ride from home.

2. I’m fairly sure it was advertised as being his friend, but I can’t remember the full title

3. https://en.wikipedia.org/wiki/Son-Rise

4. Parallel play is how toddlers play. It is the word we use to describe when toddlers play alongside each other, with their own toy and their own game, as opposed to actively playing together in a joint game. It is a developmental stepping stone to co-operative childhood games.

5. Many autistic people have food differences, either from sensory issues or co-occurring conditions, but this was not self determined, rather an enforcement of the program that believed the correct diet could lessen, improve and help to ‘cure’ autistic traits.

6. The Women’s Health Hub, based in Hartlepool, on the North Eastern coast of England, is a safe space for all women & AFAB to receive support, community & signposting.