I heard about the play, All in a Row, the other day. Specifically, I read what the writer had to say about deciding that the character of an autistic boy with “challenging behaviour” could only be portrayed by a puppet.
I know so many autistic people who have dedicated many years to overcoming society’s prejudices, fighting against the dehumanisation and othering of autistic children and adults.
And then we saw this. Among a cast of real humans, played by human actors, the single autistic is indelibly marked as an outsider. Perhaps he can, like Pinocchio, dream of one day becoming a real boy, but for now he’s cast out of humanity.
It’s hard to express just how painful it is as an autistic person to see someone who is essentially like you–the character with whom you have the most in common–portrayed this way. To be dehumanised, an empty, soulless shell incapable of any thought, feeling or expression, whose every action is in response another’s command.
This is the very embodiment of the prejudice and, yes, even hate that we face in our autistic lives. We live the reality of being labelled emotionless, incompetent, unfeeling, thoughtless. The agonising wounds of our experiences are opened afresh by this careless action, by seeing this puppet represent every insult levelled at us by our bullies and abusers.
And that is why using a puppet to portray an autistic person among a cast of human actors is unacceptable.
An empty boy with empty head, My only life is what you bring In gift each day, my will is yours. I go where you direct my string.
What do you see inside this shell, Behind this vacant glassy stare? Could anybody care enough To ever see the person there?
I didn't ask to be your puppet To play this part that you defined. Am I lost, forever other, Denied my place with human kind?
At school I would watch as the other kids played Left out on the edges and that's where I stayed Forever the outcast, forever afraid It's hard to be different, take it from me It's hard to be different, take it from me
The skills I was taught served me poorly in life Like holding my tongue, the obedient wife But never a word about facing a knife Learning compliance was no good to me Learning compliance was no good to me
I've taken the beatings, got bruised blue and black Scarred deep in my mind after verbal attack So well did I learn that you never fight back Obeying their rules didn't go well for me Obeying their rules didn't go well for me
The ones who oppress us stand guard at the gates I knelt and I begged just for scraps from their plates The loss of my dignity painfully grates The autism industry don't speak for me The autism industry don't speak for me
I've heard about heroes, I've listened to songs Of fighting injustice and righting the wrongs But my heart it won't heal until it belongs Autistic culture is something to see Autistic culture is somewhere to be
If you want to help your people then stand next to me If you want to help our people then stand up with me
As an autistic woman myself, I know I’m not alone in seeking the security of a stable, dependable home life. I sucked badly at taking care of myself when I first lived away from home at university: I was intimidated by communal cooking and laundry areas.
The pattern repeated when I moved away for work: my awful, almost-non-existent organisational skills left me struggling with all manner of domestic tasks from my finances to making sure I had food and clean clothes. I was pretty much living off take-aways when I met someone.
In my first committed relationship we set up home together, had a daughter and got married so quickly that it’s a bit of a blur in my memories. With hindsight, we weren’t well-matched and the marriage didn’t last. I think we both had breakdowns after it imploded and we went our separate ways.
Within only a few months I found myself in another relationship. You might be thinking “rebound”. Looking back, I am thinking “rebound”. But at the time I blithely dismissed concerns that I was rushing headlong into things (again) and declared that it was true love.
The marriage (for that’s what we did in our second year together) appeared to start well. Despite my partner’s occasional displays of drunken aggression, sometimes in public, we got along pretty well. Or so I thought, but in reality I was adapting to minimise the friction.
Over time I let my spouse manage all the household finances, cook the meals, choose how the home was decorated. In return I got the illusion of security and stability. I say illusion because there was always the implicit threat of being thrown out, always some reason why I couldn’t become a joint tenant.
My ties to family and friends weakened as I gradually lost contact, being made to feel guilty for spending any time with them rather than my spouse. When we went out I’d often be left sat on my own while they went around socialising, while if I ever did the same I got accused of spending no time with them.
I became well-versed in my failings due to having them pointed out regularly: how I couldn’t cope on my own, and how I’d have ended up in an awful mess if it hadn’t been for my spouse. I actually felt grateful for it, for their control over my life, making order out of the chaos.
On a number of occasions they got drunkenly argumentative and locked me out, only to be extra nice the next day after allowing me back in. A couple of times I tried to leave, spent a day or two sofa-surfing at mutual friends’ places before giving in to the pleas for me to return, promising it would be different.
A couple of times I tried to kill myself, washing down handfuls of pills with whisky or other alcohol, but I always ended up vomiting them out and surviving.
By the end I was spending a lot of time in a little box room on my own. When I felt especially threatened I would wedge a chair under the door handle to prevent my spouse from getting in, and I’d cower in there while they hammered on the door and shouted threats.
All this and I still couldn’t leave. I no longer believed I was being cared for, but having any home seemed preferable to the unknown chaos of life on my own. There were just so many things I would have to do to get away that trying to think about it overwhelmed me.
I was in mental health crisis, on medication, unable to work and suffering frequent panic attacks. My counsellor helped by guiding me through the process of organising my thoughts into an exit plan. My daughter helped me find a place to live, and assisted with setting up home there.
Things aren’t perfect, even more than a year and a half later. The emotional abuse over those years has seriously damaged my mental health and I have complex PTSD, frequent suicidal thoughts, and a bunch of new scars from self-harm.
But I also have support, and perhaps more importantly I have belief in myself. I know now that I can survive life on my own. That’s not to say I don’t struggle, and keeping on top of bills and household chores will always be difficult.
It’s tempting to let others manage aspects of your life in the belief that they will care for you. But all too often this dependency forms the basis of control, of abuse, and that is far from healthy. It took me a long time to recognise the signs, and I let my judgement be swayed by the person who was abusing me because they claimed to be looking after me and had undermined my confidence in myself: I believed their words over the evidence of my own eyes.
We autistic people are particularly at risk from those who would take advantage of us, abuse the trust we place in them and end up harming us. We become dependent on carers. Look out for warning signs like these:
If you find yourself making excuses for your partner or carer when others question the way they treat you.
If they regularly act aggressively towards you, shout at you, or otherwise make you feel scared of them, make you afraid to challenge them.
If they often tell you what you can or can’t do.
If they alternate between being cruel or nasty towards you, and apologising and being extra nice for a while.
If you frequently get criticised, teased or called hurtful names: if they keep finding fault with things you do or say.
If they make you feel guilty for spending time with other people, or make you feel bad if you interact with others online: if they isolate you from people you used to have around you.
If you aren’t allowed access to your own money, or don’t have a say in things you buy or do.
Why do I go back Where I'm not wanted? Why do I speak up When my words are wrong?
I'm not like you I'm different I'm strange I'm a weirdo I'm a freak I'm broken I'm unwanted I'm a misfit I'm unlovable I'm alone I deserve this
I'm sorry for existing I'm sorry I'm not dead I'm sorry the pills didn't work Or the knife I'm sorry I was scared I'm sorry I couldn't jump I'm sorry you have to see me I'm sorry (please stop) I'm sorry I hurt I'm sorry I can't stop crying I'm sorry for apologising
I'm sorry I disturbed your nice life
I'll be gone soon I'll go quietly You won't even know I was here
So we have conservative pundit George Will in Newsweek calling Trump “Socially Autistic” to describe his total lack of empathy or compassion. No. Just no. Read more ›
I thought I was free. I thought I could cope with limited contact, dealing with my ex occasionally. Trying to be amicable, even helpful. I was wrong. Read more ›
A Facebook post earlier got me thinking about the effort we expend in passing as non-autistic. The lengths we go to to conform. And what that costs us. Read more ›
I’d thought about leaving so many times. Going back through some old posts last night, even back to when I first started blogging, it was abundantly clear to me that I had been feeling depressed, lonely and trapped for years.
It was something I discussed occasionally with people I trusted. Not that I had many of those. But I was always more scared by the uncertainty of the unknown than I was of remaining somewhere that didn’t feel like a home. My fears always drove me back.
I tried. But it’s hard when the love you once had has been replaced by fear. Too many angry outbursts, too many times when my needs were dismissed, too many times when my anxiety reached overload. I tried to explain but when I never knew how what I said would be received it was impossible to be completely open and candid.
Even when I did manage to speak up, the import of what I was saying became lost in translation. These weren’t shared feelings or experiences; I might as well have been speaking a foreign language. Situations where my daughter or neurodivergent friends would grasp it immediately, not need it to be spelled out in detail.
In the end it had become obvious that living in that place with that person was harming me. Day by day my mental health was declining with anxiety and depression making it difficult to function. I was struggling with work, I was struggling with self care. Well, not just struggling: I was failing.
I knew the signs. I’d been through similar times before although every time it happened it brought me further down, hurt me more, killed another piece of my soul. So this time I asked for help. I went to my doctor, I referred myself for counselling. And I talked at length with my daughter.
At my second counselling session I all but broke down in tears as I described how I felt, how a steady drip, drip, drip of teasing, controlling behaviour, threats (even when later retracted) and aggressive actions had built up to the point where I didn’t feel safe. It doesn’t matter what the motivation was, whether harm was intended: it was emotional abuse and it did cause harm.
I explained how I was afraid of losing my job because my mind was in too much turmoil to focus. I explained how every time I tried to think of what I needed to do to get away I quickly became overwhelmed with the magnitude of it all.
My counsellor was brilliant. She helped me organise my thoughts so that right in the middle was my goal, “To Get Out” and around it were the factors that I needed to address.
The actual brainstorming chart my counsellor made in our session
I came out of there feeling enabled, that this was something I could achieve. I phoned my boss at work and explained everything (and I mean everything) to him. Because I was that anxious about it I came straight out and asked him if I still had a job to get back to: he reassured me. I felt so much better after that.
In conjunction with my doctor I worked out a schedule that would get me back to working regularly, and my boss was very supportive, saying that I should do what I had to do, take as much time as I needed, and asking if there was anything I needed from him or the company.
So, knowing my job was secure I went to my bank to see about taking out a loan for setting up a new home, which went through without a hitch giving me the funds I needed to cover fees and buying furniture.
My daughter helped me look for a new place, and we made a shortlist. I prepared myself and managed to phone up and make appointments with the letting agents to view two of them, the first on the very next day which was a Saturday. To cut a long story short we both loved the first place we looked at and I started the process of securing the lease.
Just two weeks after that viewing I got the keys and moved in to the place I’m sitting in now, a month later. My home. And it really does feel like home. It’s a lovely flat in a beautiful location, but more than that it is a nurturing environment where I feel comfortable and safe.
To borrow the most apt of phrases, it is as if I have come through an unseen metaphorical door. As if I escaped from a cage to live in freedom. My counsellor was in shock at the speed of the change in me: she had never before seen somebody go from tears and hopelessness in one session to joy and optimism in the next.
I’m not the kind of person who worries that it might all be a dream and on waking I’d be back to the harmful existence I had before. I know this is real, that this is my new life. It feels like a rebirth, even more so than my gender transition. I’ve broken the shell that confined me, emerged from the egg and I’m stretching my wings.
I’ve said before that I never managed to live independently. I’m not independent now. Oh, I can feed and wash and clothe myself, and I can do the things that need doing around my home. But I also have a network of friends who I can turn to if I need support. I live by myself but I am not alone.
My friends on Facebook and the people I work with could see how happy I was when I got out of the situation I was living in: a relationship that was ultimately toxic and slowly killing me. I got my drive back, my motivation. I started to enjoy working again. I got up in the mornings feeling ready for the day.
And then, a week ago today, I was sitting here. Well, actually sitting and feeling restless, then getting up and pacing, then trying to sit again. My thoughts going round and round: should I? Should I not? A dilemma: do I tell someone how I feel? Is that fair to them if they don’t feel the same way? Might I ruin a friendship? Could it even work?
I talked to my daughter. I talked to a dear friend. I knew what I wanted to do, but I needed to work up the courage to take that chance. The emotions were so powerful that I was overwhelmed. But in the end I sent my message.
And then I waited. Minutes have never passed so slowly, a lifetime between each tick of the clock. They responded! This person I have fallen so much in love with loves me too!!! And so I am flying, lifted high by the joy of love.
Two people who felt some spark between them, who are both starting to grow and learn who they can be at a point in their lives when that had no longer seemed possible. It’s a wonderful experience to be sure, but how much better it is, how much more meaningful and joyful when there is somebody with whom to share the journey.
A personal exploration of autism from a brother’s perspective, including family relationships, philosophy, neuroscience, mental health history and ethics
So we have conservative pundit George Will in Newsweek calling Trump “Socially Autistic” to describe his total lack of empathy or compassion. No. Just no. 
My Autistic Dance 