Adults with Autism

This is a long post because I've been trying to learn about autism from people who have grown up with it, and it's brought up a lot of thoughts.

I got a mix of wonderful and insightful personal experiences and information mixed with "celebrate neurodiversity". I was fascinated but a bit put off by the concept of celebrating neurodiversity. It's a fine idea, but when there's a safety issue, my son is pleading for me to help him but can't tell me what's wrong, and he's hitting his head hard into the wall or the floor or my head or someone else's head, I must admit I don't feel much like celebrating.

I have been off the blogging circuit for some time spending most of my time caring for my kids and home and celebrating the holidays with family and friends. I didn't have any set day to start blogging again. Then I got a comment on my blog from an adult with autism, and it was so fascinating to me to get a glimpse into how my son experiences the world not from "experts", people who have done research, education advocates, therapists, etc...people who so far have been unable to give me much useful information at all, but from someone who has grown up looking at the world through a similar pair of eyes.

I started looking into other adult voices on the web and found some very interesting videos on You Tube by adults with autism.

My main goal is to understand my son so that I can help him as much as possible, and so that I can understand what he is trying to communicate to me as much as possible. Life is hard enough. He has so many extra challenges that make life even harder.

After viewing various videos on You Tube and reading http://www.rethinkingautism.com/, I gather that, according to some adults with autism's points of view, they do not want to be cured, they do not want to be viewed as a puzzle piece, they do not want to be molded into the form of everyone else in society. They do not appreciate the Autism Speaks movement because of its focus on biomedical research to detect Autism before birth (I suppose so that you can decide whether or not you want the child), and to develop treatments and cures for Autism.

There are apparently no persons with Autism (or Autistics, as they refer to themselves) involved in Autism Speaks. Autism is a part of who they are, and not something that needs to be fixed. They want to celebrate neurodiversity.

As an audiologist, I spent a lot of time learning about Deaf culture, and it is somewhat reminiscent of this argument...they don't want cochlear implants because they view them as an attempt to eradicate Deaf culture, as well as other medical research and treatments. Of course there is no black and white.

My opinion is that to me, my son is a puzzle because I don't understand why he reacts to things the way he does. If he wasn't hurting himself, and me, and others, it might not be such a big deal, but he is. He can't speak. He can't eat. He has trouble learning expressive language no matter what form it is, spoken, sign, or picture, so he has a brain full of thoughts that he can't convey to me no matter how hard he tries. He screams and cries to me in hysterics, "Mamma help!", but can't tell me what he needs help with. If there were some cure for these things to make his life easier, I would love it. I would imagine he would too. It's scary making decisions for a young person, never knowing if you're making the right decisions. Especially when you can't get their input, no matter how much you may want to.

I think EVERY DAY about how what I do will affect him later on in life and hope he doesn't hate me for the decisions I've made and for all the times I've lost my patience and said things I shouldn't have or raised my voice. I always apologize for this, every time it happens because it is wrong for me to yell or say things that are mean, and I can never expect respect from him if I don't show respect myself. But I hate myself every time I fall again into a lack of patience.

I know he can be destructive, loud, and even violent, and fear visiting other people's homes because something may very well be broken, someone may be hit or kicked, or who knows what else might happen. I feel guilty because I don't want to have someone get hurt or have something of theirs broken. The fact is, although I am proud of my son and love him more than words can say, I can not blame someone else for not wanting someone or something to be hurt or damaged. This is also an issue living in an apartment where many other people can hear everything that goes on, and the maintenance company keeps tabs on everything that needs to be repaired and replaced.

I have been blessed by loving and understanding family and friends who take these things in stride and know that my son is not being "bad" and has no malicious intent. I have not had such good experiences everywhere.

I only want the best for my son, and to show him all the love I possibly can.