Twenty five years ago I tried to kill myself. This is by way of an explanation.Read more
Looking back through my school reports recently prior to my autism assessment, I was reminded how seldom I used to speak to anybody. One of the earliest labels I acquired was shy, and my teachers in comment after comment expressed their belief that I could go far if only I would talk more. Or, indeed, at all in a lot of situations.
The contrast between that and my assessment report which mentions my tendency to talk too much and go into too much detail is remarkable. So what changed?
There isn’t one single factor that helped me develop my self-confidence. Rather, it has been a combination of changes in my life, the most obvious of which has been my gender transition. Since reaching the point where I’m comfortable with how I look, I’ve become less self-conscious which translates into a more confident presentation.
I’ve also, with help from my wonderful daughter in particular, got out of a toxic relationship where I’d been controlled. My new-found freedom has enabled me to get out and about, spending time with friends. Indeed, it has allowed me to develop close, supportive friendships, where before I wasn’t able to due to restrictions imposed by my former partner.
As my support base has grown, so has my confidence in my own ability. I’d been gaslighted for years, told that I was no good at certain things, that I could never manage on my own. I believed it, and so was trapped in that situation by my lack of self-esteem and self-belief.
It’s been hard to break away from that dependency, and I didn’t get out unharmed: the trauma of living in fear for my safety has left me with mental health problems. But even so, I am definitely better off than I was before getting out.
Most of all, I can be myself. It took a long time to get here, but I found out who I am. For years I tried to be the person I believed those around me wanted me to be. I wore a mask that had been designed by others, and it didn’t fit. When at last the chafing became unbearable, the woman who emerged from behind that mask into the light of day needed a little time to find her feet. To find her own voice.
And I have. A voice that draws from all my experiences, all that brought me to where I am today. My voice.
Many of you will know that I am on the board of Autistic Inclusive Meets, an organisation run by and for autistic and neurodivergent children and adults to provide services and support, as well as actively campaigning to improve lives.
Well, I have exciting news: we’re picking up an idea we had in the early days of AIM and launching AIM for the Rainbow, a part of AIM that will focus on the particular needs of autistic and neurodivergent LGBTQIA+ people of all ages.
I’m especially proud to be involved as an autistic bisexual trans woman. I intend to make this the kind of resource I wish I’d had when I was growing up. Information, support, and connecting with your peers are of the utmost importance when you’re discovering your own gender and sexuality, so we want this to be a safe space where people can do this without fear.
We’ll be collecting links to resources that we personally trust and endorse. We’ll share our stories, and those of others like us. And we’ll be working to improve the lives of all of us under the rainbow.
It’s going to be great. We’re aiming high: we’re aiming for the Rainbow!
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?
“You mask it very well but you’re definitely autistic.”
This, essentially, was the outcome of my autism assessment yesterday. So no surprise to me or anybody who knows me. The obvious question is, “Why choose to get assessed at all when you’ve known you’re autistic for more than 10 years now?”
The answer lies, as so often, in what employers and medical professionals will accept as authoritative. In this case, my own word based on extensive reading, analysis and consultation carries less weight than that of a duly-designated medical specialist who had a couple of hours to review the results of a selection of written tests and speak to me about my experiences.
My pursuit of this assessment was for a personal reason: it was to provide evidence of the validity of my claim to need assistance and adjustments in my working environment to reduce the obstacles I encounter. I don’t believe it should be a requirement for access to such accommodations. Maybe that makes me a hypocrite for bowing to the demands of a system I feel is unfairly exclusive.
It was still a relief to hear their verdict: I won’t lie about that. It’s always reassuring when somebody else sees the same things you’ve seen and comes to the same conclusion. I would prefer if none of this were necessary, that appropriate accommodations would be provided as a matter of course based on a person’s own assessment and declaration of their needs.
In fact that’s pretty much my situation right now, stating my own needs, except that this magical piece of paper imbues my words with sufficient borrowed gravitas to pass the gatekeepers. In simple terms: if I wave this document in front of the people I need to convince of my needs, it dispels their doubts that I am speaking honestly.
The thing is, it actually doesn’t need a professional to get involved to identify when a person is autistic. Indeed, in many cases it’s not a professional who first recognises the signs. I knew I was autistic for all those years leading up to a professional agreeing with my own assessment. To me, and to the overwhelming majority of the people around me, my own assessment was perfectly valid.
I didn’t seek or need the outcome of my clinical assessment to validate my own knowledge that I’m autistic, and I stand by all the other autistics who know for themselves. Self assessment (also called self diagnosis, but I’m not keen on the word ‘diagnosis’ with its implication of illness) is as valid as clinical assessment, and it’s time it was fully and widely recognised as such.
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
(To the tune of Working Class Hero)
As an autistic woman, would I want to be cured?
It’s a valid question, and one that I believe is worth exploring in depth because its simplicity hides a host of unspoken assumptions, assumptions that differ depending on who you ask.
What Is Autism?
Autism is not just a medical diagnosis based on a set of clinical observations, even though that’s exactly how it’s defined in manuals such as DSM and ICD. Those are just the outward tell-tale signs of a brain that works a bit differently from most.
I don’t pretend to understand how my brain works or how an autistic brain is different from a non-autistic one: I don’t know what exactly makes somebody autistic. I do know I can relate my experiences very strongly to those of many of the autistic people I know personally. I know that almost all my friends are autistic and that I have more trouble establishing close relationships with non-autistics.
One of the reasons that an autistic culture has arisen, especially since the growth of the internet made long-distance and alternative–not face to face and largely written–communication so much easier, cheaper and faster, is that so many of us relate to each other on levels that we can’t reach with non-autistics: this is a consequence of the double-empathy problem where each group has difficulty relating to the other.
Where you have a culture, you have an identity associated with it. So you often find autistic people speak about autism as an identity–a cultural identity–much more than as a condition or diagnosis. This phenomenon of autism as cultural identity is why so many of us feel a strong preference for referring to ourselves as autistic and not “people with autism”.
The concept of neurodiversity is strongly associated with, although by definition not restricted to, autism. In simple terms it is the idea that autism, ADHD and other neurological differences are all part of the normal variation of human brains. It’s the idea that these are differences, not faults.
That’s not to say that we don’t recognise the ways in which our differences can present obstacles in daily life. Some of these can be disabling, especially in a world that is largely shaped by and for the neurotypical majority.
The problem with the medical definition and view of autism is that it’s entirely based on deficits, on aspects that are seen as inferior when compared to the predominant neurotype. It’s like the old saying, “When all you have is a hammer the whole world looks like a nail”: when you always frame neurodivergence as a collection of faults, you only see it as something to be fixed.
Support Needs versus Quality of Life
So we come to one of the key points: many neurodivergent people have non-trivial support needs in their everyday lives. Many of us need assistance in one form or another, whether it’s with communication, mobility, tasks such as washing, dressing or eating.
Many people who don’t require such support would equate that with a poor quality of life but that’s not true. They assume that needing assistance means you lose autonomy, the ability and right to make decisions about things that affect you. The opposite can be true with the right support: it can enable someone to do things that they would otherwise be unable to.
Requiring support, even for basic tasks and activities, does not mean having a poor quality of life. Encountering prejudices and having support restricted or denied, on the other hand, does severely reduce the fulfilment in one’s life. There’s no scale from having a good life at one end to having high support needs at the other: it’s possible to have both.
Cure = Reducing Support, not Needs
This idea that requiring more assistance and support means that one has a worse life–because that’s the assumption made by people who don’t have such needs–is a key motivation behind much of the search for autism cures. There’s certainly money to be made for the corporations and medical professionals offering these treatments too, which is always a consideration.
The problem with such an approach is that it largely ignores the needs of people today, and the cure agenda is pursued instead of investing in support services. It’s a “jam tomorrow” scenario, made worse by the priority being which “jam” they feel will offer the best return on investment and not which one those receiving it might be asking for.
There is a history of research priorities being set without the input of those the studies are focused on, leading to unmet needs and a growing disenchantment with and mistrust of the medical establishment.
When this happens against a backdrop of cuts to social services and increasing barriers to access what remains, it’s no wonder that there’s considerable scepticism among autistics whenever some new prospective cure is announced. Indeed there’s growing anger that our priorities are routinely ignored or overridden.
Cure = Eradication
Some treatments are aimed at reducing or eliminating already-present aspects of autism–things like “improving” our social interactions or our ability to act “normal”. Others, particularly involving genetic manipulation, are intended to prevent autistic traits arising at all.
When we hear talk like this about “curing” autism it comes across as a desire to eliminate us as a people, destroy our culture, remove the core part of our identity. Eradicate that which makes us who we are, and so eradicate us. This is why there’s such strong opposition from autistic people to research into what from our point of view is no different from eugenics or genocide.
Would I Want To be Cured?
After all that, back to the question I started with. For me, being autistic is not something I can separate from how I see myself: it’s an intrinsic part of me, one of the aspects that makes me uniquely me. Without it I would not be me.
I feel at home in autistic culture, among people I can relate to and identify with. My people.
Anything that threatened to break the affinity I feel, that risked severing my feeling of connection to these people, would feel like it threatened my very life. Maybe even worse than that, because I would go on, cut adrift from the tribe that feels like home to me and I would be keenly aware of the loss.
But there are things I struggle with. I sometimes become overwhelmed by emotions and/or sensations and unable to express myself verbally, either in speech or even writing. I misunderstand people–neurotypical people especially–because I expect them to respond the way I or another autistic would. I have sensory processing and executive dysfunction.
Would I like to never again feel overwhelmed and disoriented by complex noise or too-bright lighting? Would I like to be able to remember what I came into a room looking for? Would I like to be able to keep my apartment organised?
These are areas where I want assistance. If there was a way to “fix” them while leaving everything else intact would I be interested? Maybe, but I’d need to be sure the cure wouldn’t have unintended consequences: side-effects.
So there’s my answer: a definite maybe, if it’s not too much trouble and it wouldn’t do anything I didn’t want it to. I’ll take help if it’s going, I might consider limited treatments, but I would never want to not be autistic. I don’t want to be “cured” because although I accept that I’m disabled, I don’t see myself as broken.