All that time, I was told I was too low-functioning to be allowed to have an opinion about my prospects, what I could or could not do, I was told that treatment was wasted on me. There were people with real prospects who could make better use of the resources.

Here is the official response from the person who wrote Autism Uncensored, and my response to her response. Why arguments like “you are nothing like my child” are specious and should be rejected by autistics and non-autistics alike.

Her response can be summarized by 1 sentence: “You adults with Autism who are reaching out to me in brilliantly worded protest, you who are capable of self-advocating, organizing, who have children of your own – you in no way resemble Zack.”

Except that some of us were like her son. I was delayed in all of my developmental steps. Walking. Toilet training. I did not speak until I was 4. I had selective mutism for many many years because my speech lagged behind my peers. I still have periods of burnout and lose speech.

I was institutionalized, I was told I could never live independently, finish school, lead a normal life & that if I did not accept that, I would not be able to “go forward”. I didn’t live independently successfully until I was 35.

All that time, I was told I was too low-functioning to be allowed to have an opinion about my prospects, what I could or could not do, I was told that treatment was wasted on me. There were people with real prospects who could make better use of the resources.

I am here because one medical professional believed in me and fought the hospital administration to be allowed to treat me. And she was right. And I was right. With the assistance, I have continuously learned to function better until I did finish school, live independently…

And crossed some razor thin line where, on one side, I was too “low-functioning” to know myself, have a say in my fate, be worth helping, and on the other side, suddenly, I am too “high functioning”, not allowed to speak for autistics, not “like my child”.

I “couldn’t possibly know what it is like to be ‘low-functioning'”. So to be clear, if you are autistic, despite living that disability from cradle to grave, we are never allowed an opinion about autism or the experience of being autistic, because we fall in one of 2 categories.

And are told this by non-autistics who, having never lived a single day as an autistic, put themselves forward as speaking for all autistics by dint of their ability to tell all of us what we can or cannot know, do, say or be. And that is the outrage.

The non-autistic authority to speak is predicated on holding up and hiding behind a silent autistic body unable to object and using it like a ventriloquist puppet to speak for and about us, while silencing anyone who, by virtue of having lived longer, can now express themselves.

These parents, like this author, never once see it as a sign of hope that their child may one day do more than their dismal expectations presuppose. They don’t seek insight into what might be helpful for their child, what their child might be experiencing. There is no curiosity.

Because their entire agenda is based on silent autistics. I reject this belief that I can only be too low or too high functioning to speak about autistic experience, rights, needs, desires etc. This is my identity and that of my community.