Understanding the Cure Concept

I had the exchange below with a new member of the community and I think it brings up an important topic which needs to be discussed more often and more openly and with more good intentions all around. There is a huge divide in the autism community between higher functioning individuals who feel they are their own culturally distinct group, and those like my son Dov who are more severely affected and their families who pray for treatment and a cure every day. I can’t think of any other situation where at one end of a spectrum you have highly unique, intelligent, sensitive and creative people and at the other end you have all those same positive attributes but trapped in a body that will not stop moving, cannot speak or even initiate voluntary behavior.

​We need to somehow find a new way to talk about this so that we aren’t insulting and hurting the feelings of higher functioning people with terms like “combating autism” when we are trying to help the more impacted members of our community. People with high-functioning autism and Aspergers syndrome contribute a unique and valuable way of thinking to our world but those who are severely disabled by autism desperately need medical help, treatments and a cure. Not a “cure” for their unique and wonderful minds and personalities, but a cure for the terrible physical and mental suffering that are a part having severe autism.

​Talking to all members of the autism community in a constructive mutually respectful way is a good start. We are all bound to make mistakes and step on toes, but if we reach out in good faith there can only be progress and greater understanding between all of us.

​This is the letter from Meaghan:

​Hi Portia,
​I want to teach children with classic autism... I haven't even set foot on a college campus and I'm already having trouble..

​I have Aspergers Syndrome, I guess being on the spectrum sometimes it's hard for me to legitimize the cure concept. Understanding or legitimizing this concept is a blockade for me.. all around where I volunteer I see it and I don't know how I feel.

​My reply:

​Hi Meaghan-
​Thanks for joining the community and for contacting me. I am very glad to hear of your aspirations to become a teacher for children with classical autism. There is definitely a divide in the autism world between the higher functioning people (incl. Aspergers) and the parents who want a cure for their children. It is very interesting because I cannot think of any other situation where at one end of the spectrum you have a distinct culture and at the other a disorder that does need a cure. My son for example cannot physically speak, can't walk or run very well, cannot dress himself, cross the street or make a simple meal for himself. He suffers from extreme anxiety and mood swings and cannot control his impulses or repetitive behaviors. His ability to initiate voluntary behavior is very limited. However, he is also very intelligent, creative, sensitive and just a beautiful person. He communicates by typing. We did not know he was so intelligent until he began to communicate at the age of nine. I suspect there are many, many more children like him out there. His motor skills are so poor that typing is very hard for him and takes a long time. His life is very frustrating and painful in many ways and he wants to get better. In his case he really needs medical help - only there isn't any available yet.

​You on the other hand can probably do pretty much everything you need to do to have a pretty good life (I am imagining) and you are also probably a very intelligent and unique person - all the more so because of your Aspergers I would imagine.

​This divide in the autism community needs to be discussed out in the open much more - we need to help each other and unite in our common cause. I also feel that parents of autistic kids have ignored the hurt feelings, anger and outrage of the higher functioning people and that is a mistake. I am so glad you are planning to teach autistic kids - I think that is fantastic. It would help them so much to have teachers who are understanding and empathetic and who can be role models. I strongly support you in your interest in teaching.

​Best wishes, -Portia

​PS Would it be OK with you if I posted our exchange on the community forum and/or in my blog? I think it’s an important topic.

Posted on 04/13/2007 at 19:07:49

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