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.
© 2009 by Rachel Cohen-Rottenberg
i wish i had written that. i’ve been trying to form almost these exact thoughts for a few months now, and lo and behold, you have gone and done it.
I wish I could have written that too. It should be engraved on the walls of every school, hospital, medical college, training facility, social services department and legislative assembly. It should be translated into every language in the world and made required reading for everyone. No, it should be learned by heart by everyone. It’s about time!
This… this is awesome. That’s all I can say, really. That, and I totally agree with it.
This is great. Who wrote this, exactly?
Hi Ari, good to see you here. I wrote this post in its entirety.
–Rachel
Bravo!!!
Brilliant. Says it all, really.
This is sheer poetry. Brilliant and true.
Excellent post, Rachel, I agree completely!
WOW! Think you could offer this as a poster on one of those print-to-order websites? Cross posting on my FB & blog.
Rachel,
This is a wonderful piece written from the most unique perspective. You have been given a gift in every sense of the word.
~Jon
Thank-You Rachel! I would like to print this to hand out. Is it OK?. (Of course giving credits to you).
Hi Johanna,
Please feel free to share this piece with anyone you’d like!
[...] Please do go read the rest of the list over here. [...]
>I suffer when others try to silence me.
Have you ever heard of G. C. Spivak’s concept of the subaltern? I’ve noticed that academic attitudes towards aspergers are often based off the idea that instead of letting aspergers people speak, the academics will speak for them. This has interesting parallels in western academic attitudes to the oriental: the westerner sees the orient, mines the orient for data, then speaks for the orient – while at the same time, rendering any non-western speech meaningless. To be taken seriously, the east has to adopt the west’s modes of thought and language.
In the same manner, the NT psychologists ‘speak’ for the non-NT, who are considered in terms of raw material data, and for the non-NT to be treated with respect, they have to hide their ‘disability’.
I think there’s a lot of value in contemporary theorists like Spivak for anybody who finds themselves delineated from the ‘typical’, especially for use in defense against the fairly stone-age views of those who wish to ‘cure’ difference.
Hi Shackleton,
I really like what you have to say here about Spivak’s work. It’s applicable to so many different forms of cultural and social appropriation and silencing.
I am reading this post and remembering yours: http://thinkingautismguide.blogspot.com/2010/06/what-i-want-people-to-know.html
“I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.
In other words, I struggled because nobody knew exactly what I was struggling with, and because I did not have the words to describe my difficulties. For me, the rising autism rates represents a rising rate in awareness and knowledge and a hope that less and less children will be mis-, under- and un-diagnosed, until there is no child that slips through the cracks. With that hope, there is a chance to make a difference, to ensure that each child gets exactly what he or she needs and requires in order to succeed.”
by Corina Lynn Becker
Thank you for this personnal strong and sensitive thoughts. Neurotipic parents have a lot to learn from you. It is always very inspiring and helpfull.
I would like to translate you text in French for my blogue. May I?
Thank you in advance.
Sylvie, yes, feel free to translate my words into French. Just make sure that you attribute them to me and provide a link back to the original post. Many thanks!
Dear Rachel,
You are awesomely wonderful! Plain and simple yet so vivid. I am a new comer to your blog and a mother of a 10 year old son. I started reading your blogs about half an hour ago and just cant stop reading. Thanks for creating such a wonderful blog. I don’t have a website to share at the moment but hopefully will sometime later.
Cheers,
Manisha
Hi Manisha,
Thank you for your kind words. And welcome!
Thank you Rachel for this wonderful poem. Each line is so true and could be the starting point to great discussions. I clicked to your blog to learn more about the sensitive, sensible person who wrote this simple but so moving poem. All posts are so interesting I have been here for quite awhile and intend to return. Hope your university accommodations get ironed out!
The Best,
Lorna d’Entremont
Thank you so much, Lorna. And welcome!
I love your writing Rachel
this should be required reading for all parents
Thank you, K. I love your writing, too. It’s very kind, spiritual, and uplifting.
It’s beautifully written and very true for you, no doubt. Hopefully, though, people won’t misinterpret this as meaning that NO ONE suffers from autism. I am all too familiar with young people who do.
I only speak for myself and for others who feel as I do. Human experience is too varied for people to say that they speak for everyone.
That is really awesome. I will have to save it for my son to read when he is a bit older. Thanks so much for sharing it.
Thank you for your kind words, Flannery.
Beautiful, beautiful piece.
Thank you, Jessica. So good to see you here!
This can be spoken of any ‘disorder’ that anyone can be diagnosed with.
Thank you for this blog. I am new (like only 45 mintues of reading this site!) I am a children’s occupational therapist and have a child with Asperger’s. It is funny how easy it is to spot children struggling with issues when I have my professional hat on, but with my eldest, whom I only ever knew how he was with me and friends (and that was engaging completely how any 4 year old would be), it was very different. From around 3 years old, I occasionally would think that he showed some mannerisms that would concern me, but nothing enough to warrant further investigation and I would often pass it off as me being too professional and not a mum. It was only when he got into nursery and had to function in a busy, loud, social environment that concerns were raised – and when I saw how he was in that setting too. I was devastated to be honest as my bright boy who is so loving, affectionate and flexible, just looked competely lost and uncomfortable around 29 other children and he had just totally withdrawn into himself and the activity he had taken with him. Two years on, I feel I am a better therapist because of my home experiences, but I am also always trying to make sure that I can be a better mum too – reading this site has been a really good experience for me (and a bit of an emotional one as I read this poem!). It is also nice to be able to read about the life of someone with Asperger’s who is leading a rewarding life and not just know about the children and young adults I see in therapy who are really struggling to cope with what life is throwing at them.
Hi Darryn,
So good to see you here! It’s so important that people see that many of us struggled through hard times and have made good lives for ourselves. I want my blog to be a reminder that the future can be very bright, especially when kids have the right support.