Monday, April 11, 2011


Cure ignorance, not autism. I thought it should go without saying, but apparently I was wrong, so I will say it now: People with autism (adults and children) deserve to be tread with the same level of dignity as everyone else. That's not to say that people without autism are consistently treated with dignity, either, but that's another issue that I can't begin to touch here.

So, how do you treat a person with autism?

Respect our differences! Please, quit trying to strip us of every little thing that makes us autistic. Who cares if I stim when I'm alone in my apartment? Heck, who cares if I do it sometimes in public? It's part of who I am; leave it alone. Maybe, instead of getting rid of the stimming, you can look at why I'm stimming and try to change whatever is making me uncomfortable.

Do NOT talk down to us. In my research study, all of the researchers talk to us like we're children. Now, I'll give you that in many ways, I am a child... but they speak to us in a way that I don't even talk to my friend's 2-year-old. I am a highly intelligent human being... I would venture to say that most of us in the study are more intelligent than the researchers themselves... please, treat me like the intelligent person that I am.

Involve us in decisions about us. Whether it's a behavior plan or a living situation or a huge, nationwide organization that seeks a cure for autism, we deserve to be involved in these decisions.

Respect our limitations. It's immensely frustrating to be told that I'm making it up or to get over it when I can't do something.

Back to the cure issue... first of all, don't assume that it's either good or bad. Some people want a cure and some do not. However, the way to go about finding a cure is certainly not to research prenatal testing. Why? Well, if a parent finds out that her baby-t0-be will have autism... how many will abort? Right. Not the way to do it. This world needs people with autism.


  1. Very well written, Lydia! I'm with you, we don't need to cure autism, we need to help people with autism to be able to function comfortably and hopefully limit the negative aspects of autism (pain, GI issues, etc.). As a mother of a child with autism, I can see why some parents want a "cure" since their children are often suffering in many ways, but I also understand the perspective of autistic people that they do not need a cure, that they are not diseased, and that their autism, despite its challenges, also offers tremendous gifts.

    As Temple Grandin has said in the past, "What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done."

    You are an inspiration, Lydia! (((HUGS)))

  2. "Back to the cure issue... first of all, don't assume that it's either good or bad."

    I think this is a tough issue for some people because they see autism as an inherently bad/wrong thing. I'm not judging those who see autism as always being an undesirable...I don't even really know what I think on the subject.

    But I think it should be acknowledged that yes, while autism can offer "tremendous gifts" it (to my knowledge) always comes with challenges as well. I think it's easy to make the jump from "autism causes challenges" to "autism is always undesirable" to "a cure is the answer."

  3. I agree 100% with your position...

    I have strong feelings on looking for a cure... to me what I have is not a disease... its who I am... its what I am.... I am 43 years old and have aspergers... I was finally diagnosed 6 years ago... and one of my hot buttons is people assuming hey your older your not that way... get over it... bah! I had a hard time growing up socially.. and other issues with my family that don't need to go into.. but one thing I do know is what my grandmother used to tell me and I agree with 100% with a gift comes responsibility... this was 20 years before spiderman was thought of lol... Lydia... you inspire me at times... along with Temple... but thats what we do... is each of us has a gift and a limitation... its what we do with that gift that makes the difference...