It’s become a bit of a bogey man in our society.
Throughout the last century traits were gradually gathered together and given a name. And along the way, the name has evolved into this label that nobody wants; so feared for our precious offspring that on occasion children aren’t vaccinated out of fear that they may end up like me.
But why is that?
I believe that autistic people have always been among us. Why are we so afraid, now that we have given it a name?
We think of autism as overdiagnosed / we say “my child has…, it’s definitely not autism” / we publicly give our children diagnoses we are unwilling to contemplate for ourselves / we talk about having “autistic traits” but don’t call ourselves autistic.
And I won’t lie – coming out as autistic was way harder than I ever anticipated, despite having prepared for it for almost a year. I thought, I’ve come out as having a Borderline Personality Disorder diagnosis, how hard can this be?! But it was – and continues to be – way harder to come out as autistic than it was to come out as BPD.
And it was hard to adjust to the label, too. I realised I fit the criteria for aspergers eight months before my diagnosis. The first few months after realising turned my world upside down. I cried all the time. I questioned my relationship with God. Almost everything in my life that I held dear could now be categorised as a symptom of a disability, from a certain angle. So I get it. I get why people don’t want to identify that way themselves. Why I have had so many people say things to me like “I’m not autistic, but… I have friends on the spectrum, etc”. (My BPD diagnosis never once triggered a “I don’t have BPD, but…” reaction.)
And I get why people grieve for their children. It’s hard to come up against something that society fears so deeply and have it thrust, unasked, into your life. It’s hard to contemplate children never speaking, or toilet training, and it’s hard to come to terms with a way of being about which very little is really known. I didn’t ask for my label and I had no idea it was coming. I had had 30 years of living in this body, and still it made me doubt everything. So I do get it, I do. And I also know that I have a certain privilege, to be able to live a life that is reasonably “normal” in the eyes of society and be autistic at the same time.
Depression, anxiety, even more ‘severe’ mental illnesses – it’s become almost socially acceptable to share our stories of these kinds of struggles. But still autism is seen as something so ‘other’. I wonder why it is so much more feared than these other labels, when such identification has so much potential to teach us about the roots of mental ill health within society, if only we have ears to hear.
When I look at the people I know who are or who could be defined as autistic, I see so often a commitment to truth, to honesty, to a new way of being. I see people who recognise patterns easily, who are naturally skilled in research, who are integrous & loyal, who don’t avoid the truth for the comfort of others. Who are natural problem solvers. Who can sometimes have a pronounced spiritual inclination, or even what might be termed precognitive awareness. I see people who look at something and see what is possible rather than what is. And who fight for it. Who agitate for necessary social change tirelessly, often to seemingly deaf ears. Who can be passionate, and single minded, and sensitive. Unusually perceptive through that sensitivity. Who often like calm and order and seek out ways to create it. Who dream.
And I wonder, how could it be that these people have become the bogeymen of society? How can it be that, for many of us, this diagnosis is the thing we so grasp at finding ways to avoid for our child?
I’m so glad I realised I’m autistic. It changed my life for the better in a myriad of ways. I see the things I am good at now. I see where I need to give myself allowances, and I allow myself to do that. I don’t waste time trying to do things I’m not made for, and I am more confident in doing the things I am. It showed me ME, and in a really wonderful way. I feel beautiful, intended, and special, probably for the first time in my life.
Autism diagnoses can highlight our strengths & validate our weaknesses in a world that often doesn’t, and they can be a tool for positive self recognition, clarity, & mental wellbeing. Just because society has come to assume disability along with the word, it doesn’t mean this way of being has to be always disabling. We are typically mostly wrong along the way to effective change; the human race is always learning.
And this is not to say that autism is not often disabling. When you have a more sensitive nervous system, things like being asked to change frequently – house, job, school, or city, as we are more frequently asked to do in Western contemporary society – can be disabling. If your hearing or sense of touch is more sensitive, to have to stand for extended periods of time in a large crowd of children running around – as we ask of our school children daily – can be disabling. If you have dyspraxia, to be put in a position twice a week where you have to catch a ball publicly – again, as we ask of our school children – can be disabling. If you have a verbal processing delay & find it easier to communicate in writing, to be put on the spot and asked to answer a question verbally can be disabling – again, something we often ask of our school children. (Just as contemporary society now largely understands that it is not easy to ask a dyslexic person to communicate in writing.) To have it implied consistently that you do not know your own mind – to be told that you should push through & overcome your revulsion towards certain foods, or fear of staying away from home, for example – can be disabling.
But – just as we adjust to dyslexia, we can learn to adjust to these needs. We can learn to listen to and believe autistic children and adults.
And I wonder what life would look like if as a society we encouraged ourselves to do this – how much less disabling autistic people would find their neurology?
How many fewer people would battle depression, anxiety, self harm, and eating disorders?
How many more researchers, authors, and social activists there would be?
How much more, in that world, would autistic people be able to offer of the strengths that come with our neurology?
How much clearer could our understanding of autism become if the stigma around it dematerialised? If adults did not shy away from such identification for themselves or their children? How many more autistic people could then be accounted for – and thus how much fuller our picture of autism could become? How many more children would grow up with less harm, more able to offer the world all that is true and good within them? How many more adults could learn to cherish and respect their own uniqueness, for the first time ever?
I just wish everyone could see what I see when they think about autism.