Guest Post: I Do Not Suffer From Autism

Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.

I do not suffer from autism.

I suffer when someone calls my way of being a disorder.

I suffer when others invest time and money to prevent people like me from being born.

I suffer when anyone suggests that I might recover or be cured.

I suffer when others feel sorry for me or for the family I have created.

I suffer when I fear that people will consider me broken.

I suffer when my being autistic scares people away.

I suffer when others try to silence me.

I suffer when people suggest that I do not have all the same feelings they do.

I suffer because I must describe my way of being by referring to a medical diagnosis.

I suffer because I live in a society that does not celebrate difference.

I suffer because I live in a culture that does not cultivate sensitivity.

I suffer because I live in an environment that values appearance over substance.

I suffer because I live within a social order that calculates human worth based on productivity and conformity.

I suffer because I live in a world that does not honor the gifts that autism brings me.

I suffer because I have learned to apologize for who I am.

But make no mistake: I do not suffer from autism. I do not suffer from who I am.

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  1. This was really amazing and True. Rock on.

  2. Thank you for writing this.

  3. I suffer because I have learned to apologize for who I am.

    This whole post gave me shivers, but this line in particular. Beautifully put.

  4. so so true and a good description of social model

  5. I think you express the feelings of most of us. I always try to express the positive attributes of autism to my two autistic children. Eg., outstanding creativity, different but interesting perspectives, ability to focus intently on a project. It certainly helped me to succeed in my career.

    Thank you for your beautiful poem.

  6. THIS THIS THIS THIS THIS x infinity

    This is so simple, eloquent and elegant. I’m going to go share it on Facebook now.

  7. Thank you thank you thank you thank you.

  8. It amazes me how people insist on seeing differences as deficiencies, things to be overcome. I still run into people who think I need to “work on” my introversion. I don’t suffer when I stay at home and read a book instead of going to a social event; I suffer when people tell me it’s something I need to “fix.”

  9. Dolly: I often suffer when I listen to them and do go out. I just don’t fare well in group environments. If I stick around long enough it’s almost sure to trigger my depression, and there goes my good mood.

  10. By way of introduction, I am not autistic. That said, this is one of the most touching amazing things I have read in quite a while. I’m thinking of framing it, and I _know_ I’ll be teaching with this piece of writing for years to come (I teach sociology). I doubt I can express even half of how amazing you are. WOW, just wow!

  11. Jayn: Totally. When I’m in a group environment, I just start getting down on myself and thinking, “Why don’t I know how to relate to people the same way as everyone else?”

  12. Hi everyone,

    I’m so happy that my piece resonated with you. Thank you for all your kind and supportive words!