By Heta Pukki
On this World Autism Awareness Day, I would like to express my thoughts on the meaning of the spectrum, of autism existing in many forms, some close to conceptualizations from decades ago, and some not so close.
The spectrum has not lost meaning, despite claims to the contrary. It keeps gaining more. Its meaning is not defined by clinicians, researchers or any other kind of professional who may sometimes feel disappointed because autism is not convenient, will not follow boundaries or fit into categories that would make it easy for them to handle. The meaning emerges from our lived realities, and it keeps growing.
Having followed the recent discourse with considerable astonishment, I feel that I need to state this simple, self-evident fact: Autism runs in families. Different members of a family show different combinations of characteristics, different support needs. Why is it necessary to say this, at this point in history? It almost seems like some people want to deny the biological reality. For what purpose? To create artificial, illusory simplicity, a tunnel-vision world where the word autism would be reserved only for those who are perceived as patients.
Any halfway decent autism researcher knows that autism exists in many forms, some of which come with co-occurring health issues. It is vital for the protection of autistic people that we are not categorised as ‘something else’ because we don’t match someone’s outdated stereotypes. Too many young women being diagnosed? Better than too few, and they should all be taught about the types of health issues that can affect autistic women specifically. Long and healthy lives should be the goal, not nitpicking about whether a girl can understand jokes or irony, and how important (or not) that might be for the establishment of tidy diagnostic categories.
The meaning of the autism spectrum is crystal-clear in the lives of my generation. I lived almost thirty years without knowing about it, and now I’ve lived almost thirty with the knowledge. I don’t know how to even begin to describe the benefits without it sounding like a wild exaggeration. For one thing, I have found others, and while non-autistic people still almost unanimously shun and avoid me, I have lived and worked with numerous autistic people in all their bewildering, frustrating, fantastic, glorious variety, some of them quite clearly disabled, some ingenious, funny, creative, and some all of those at once. Two of them are my daughters. We have a whole new generation who grow up in a different world, young people who know more than any of us older ones knew at their age, but still face battles, still have to learn to advocate for themselves and each other.
One image I have in my head about all this is one of looking backward and forward in time, at the chain of generations, long rows of shadowy figures, past and future. The knowledge about autism, the discovery of it, does not just split one life into two distinctly different halves, it’s historical. My parents, grandparents, great-grandparents didn’t know. All generations from now on will know.
Dear Dame Uta Frith, and all other like-minded people, that’s how big it is. This is a genie that you will not be able to stuff back in the bottle. It seems sometimes that you have all the power. You don’t.
