Statement from an Australian woman with Autism

I am an Australian woman with autism. I have young children, several of whom have also been diagnosed with autism. I would like to thank you for hearing my thoughts during this enquiry.

My concerns are with respect to points d, e, f, and g in the terms of reference, and especially point k, “the appropriateness of independent assessments for people with particular disability types, including psychosocial disability.”

Is an assessor going to see my autistic daughter melt down because she can’t stand the noise of water coming out of a tap, or is he going to chance upon her on a good day (smiling and physically affectionate as young autistic girls often are) and decide she’s not autistic enough to need help? Is he going to talk to the speech therapist, OT, and psychologist who have been working with her for years to get her to express herself, manage her emotions, and not bite other children when she’s stressed? Or is he just going to note the fact that she sometimes chatters and plays with dolls and decide that none of that stuff counts?

To me, it seems like a cruel irony that the very thing that causes autistic females to inevitably burn out from exhaustion—our masking—is the thing that could cause us to lose out on all the fragile gains we have made in the last few decades in terms of recognition and treatment.

It is very difficult for me to see this as anything other than a terrible regression to the time when only the most blatant and immediately visible disabilities were regarded as “real”, and those of us who could fly under the radar were instead treated as defective or troublemakers (and now have the ruined lives to show for it). It has been a joy to see my daughter get the support I didn’t get at a young age. The fact that this could all be taken away fills me with despair.

I can probably survive losing my own supports—my own quality of life will decrease, my kids will lose out on the benefits of a functioning mother, and it will probably make it difficult or impossible for me to earn an income again. Still, i’ll survive. It’s the loss of hope for all the little girls and boys out there that truly eats at me. The ones who we be told as a result of these assessments that their disabilities aren’t real or valid, but that they are just “defective” after all, and they’ll have to deal with it all on their own.

Is this something we want to do to our children? Is this the country we want to live in?