I Don’t Have Stories, I Have a Medical History

This is an image of Sara Luterman as a child. She is wearing a red sweater and leggings. She has brown hair and glasses. Sara is holding a basketball that is larger than her head. Four years ago, I was volunteering at the hydrocephalus center for a fairly famous hospital. I had been invited to sit in on an important meeting or procedure – I don’t actually remember which at this point. What I do remember is that I was going to be late. I remember the consuming sense of dread, rage and confusion increased with every passing minute I sat in my car. I couldn’t be late. I didn’t know how to be late. So I did the only thing that seemed sensible to me at the time: I turned the car around and went home. Then I didn’t speak … Continue Reading ››

Advice for Therapists from a Neurodiversity Advocate

Thanks to the success of Steve Silberman’s ‘Neurotribes,’ therapists and service providers have become aware of neurodiversity. On one hand, this is wonderful. A concept Autistic self-advocates have been celebrating for years has hit the mainstream. It seems that therapists and service providers are finally listening to autistic people speak. On the other hand, there seem to be many misunderstandings about what neurodiversity, and by extension allyship, entails. Therapy can only be enriched by neurodiversity, if therapists will let it.

A common misconception about neurodiversity is that we are pushing the idea that autism is not a disability. It's true that in general, neurodiversity advocates believe that autism is not a ‘disorder.’ You'd be hard pressed to find advocates who don't consider autism a disability, though. We know, through our lived experience, that autism is a disability. The world we live in was not built for us. Or at … Continue Reading ››

Autism Self-Diagnosis is not Special Snowflake Syndrome

Recently, 4chan-flavored trolls invaded the #autchat hashtag. For the uninitiated, Autchat is a bi-weekly discussion group for Autistic people. Past topics have included friendship, autistic representation in media and strategies for coping with executive dysfunction. The community is usually warm, welcoming and a great place to learn. Instead, participants were told to commit suicide or drink bleach to ‘cure’ autism. The source of their ire? An Autchat regular and middle-aged mother of two described herself as ‘informally diagnosed.’ Autism self-diagnosis is a topic that can evoke strong feelings in many people. It isn’t unusual for adults to self-diagnose. It also isn’t unusual to get a lot of push back or even violent threats for self-diagnosis. Why does self-diagnosis make people so angry? More importantly, why do people self-diagnose in the first place? The hostility directed at self-diagnosis is, fundamentally, based in ignorance of what factors lead to its existence: Healthcare … Continue Reading ››