Rethinking Autism: Autistics Speak

This is great to see.. an organization/website that wants the attitude about autism that is presented in the media to show more respect and dignity towards those individuals who have autism.

It was 2 1/2 years ago that I wrote a post expressing my dissatisfaction about how autism was being portrayed in the media.

Autism Acceptance Starts a Big Debate

Finally, a story on a "mainstream" news show about neurodiversity and autism acceptance! Click on the video link below to watch. I missed this when it was on, but thanks so much to Andrea for sharing this on your blog.

I have hoped for the autism acceptance movement to get attention like this for a long time. My frustration with the public perception of autism was one of the inspirations that I had to begin this blog almost a year and a half ago.

I am so glad that Kristina Chew had the opportunity to be interviewed. She is a wonderful spokesperson for us parents who accept their child's autism and I have always enjoyed reading her blog. Hers was one of the first blogs I came across done by a parent who seemed to accept her child as he was.

Ari Ne-eman's quote "anti-cure doesn't mean anti-progress" is terrific. He is right, just because a parent doesn't think his child needs to be "cured" doesn't mean that he doesn't think that they should be left without any education or not taught skills and strategies to deal with their challenges. I think what it does mean is that he has hope, and is willing to rise to the challenge of teaching his child to live the best kind of life that he can. Even on the bad days, he will love his child and do his best to assist. Remember, this is the same job that parents of neurotypical children have. There are just a lot more challenges for the parent of an autistic child.

Kristina Chew stated that, "Acceptance, to me, is the beginning of hope." I agree with this as well. How can a parent have hope if she doesn't accept her child ?

Here is a link to the text of this video clip. I'm amazed at the challenges to "acceptance" that are in the comments after this article. I had to laugh at Diane Sawyer and the reporter in the video when they said "Neurodiversity," there's a new word! Where have they been? This term was around a year and a half ago, which was when I became familiar with it. I'm sure it had been around a while before that too!

Autism Awareness Month

As Autism Awareness Month approached this year I was gearing up to write some posts on the subject, but it seems that I have been overcome with a spell of writer's block and busy Mom syndrome, at least for the time being!

Here are a few quotes from things I have watched or read in the last week or prior to that:

"Art is the voice of autism." I heard this on the hour long show that CNN did about autism around the world last Tuesday afternoon. While I don't necessarily think that all individuals with autism are necessarily artists, I can see that art can be a good outlet for many individuals with autism. For my son, music is the form of art that he seems to be most drawn to.

"Finding a cure for autism is like finding a cure for blue eyes." This quote is on the home page of a My Space page done by a teenage girl who identifies herself as Female 15 years old Dudley, Midlands United Kingdom. I like this quote. The more I hear about autism and the supposed "epidemic" of it that is occurring, the more I am convinced that it is something that has been a part of humanity all along, as Roy Richard Grinker shares in his book "Unstrange Minds." This is a quote I have shared before:

This book therefore addresses the clear rise in the prevalence of autism - and, more precisely, the range of conditions now called autism spectrum disorders -- by exploring the cultural factors that have changed our perspectives on children and mental disorders. The shift in how we view autism, in other words, is part of a set of broader shifts taking place in
society.

....the newer, higher, more accurate statistics on autism are a sign that we are finally seeing and appreciating a kind of human difference that we once turned away from and that many other cultures still hide away in homes or
institututions or denigrate as bizarre.

I don't want Autism Awareness Month to be a month of fear and pity, I want to see more Autism Acceptance!

More About the Oprah Interview - a 9 year old's thoughts

My oldest son watched the show yesterday and after watching it he told me that he was glad he saw it but that he didn't really like it. I asked him why and he said, "because it didn't seem real." I probed a little further to find out why. I wish I could remember our dialogue better, but the gist of it was because they did not talk to any autistic people!

Isn't that interesting? While there have been a few direct conversations on television with autistic people (Amanda Baggs and "Sue" from "Autism is a World"), most media attention regarding autism is given to the emotional rantings of distraught parents and medical professionals.

I found the excerpt with Andrew, the "almost 12 year old" boy on Oprah yesterday interesting. My oldest son reminds me a lot of him. Like Andrew and David, his brother, my oldest is 16 months older than his autistic brother. He is an immense help to me, and as they have gotten older, he is wonderful about trying to engage Samuel in playing. He understands that Samuel is autistic and he will always be different. While much of our family life is affected by and perhaps consumed with autism, I feel no guilt for how we are living and for the help that I ask of from my son. There are plenty of moments that he gets individual attention from me because he is homeschooled while Samuel goes to public school. He also gets to travel with his Dad for his go-kart racing and other occasional trips they take to my husband's hometown, Rochester, New York. Unlike Andrew, my son does not have such a negative view of autism. I'm sure there are times that he wishes things were different, but he does a wonderful job of accepting our life as it is and accepting his brother as he is. I liked seeing the video of Andrew trying to play with his brother. I'm sorry that he feels lonely and has a hard time that David often won't respond. In our family we have the added benefit of Samuel having a younger brother. He doesn't yet understand what autism is, and he is relentless in his attempts of getting Samuel to play with him. I think that this is invaluable experience for Samuel. My oldest and youngest boys also have the benefit of playing with each other when Samuel decides he is going to ignore them.

I don't mean to offend anyone who has made the decision to have only one or two children by saying this and I know not everyone can have the set of circumstances that I do and I know there is a certain paradox in this, but having several siblings that are both older and younger than my autistic child is a HUGE benefit for us and I think it makes living with autism easier.

Well, today is Good Friday and I need to spend my day appropriately so I better end the blogging for now. We cannot participate in the various services and masses at church because of Samuel, at least for right now. We are fortunate to have EWTN, a Catholic television station, on which we can watch Good Friday services so we will have that on for most of the day. Based on how Samuel is behaving in church, I do envision a day, several years up the road, in which we can start participating at church during Holy Week again.

Mobile Chaos!

Baby girl just started walking this past week. She is the latest to walk of my four children, at 16.5 months. She can hear me open the dishwasher door from the other side of the house and she toddles over immediately to "help" me unload it, whether I'm in the process of loading it or unloading it.

The basement playroom is her favorite place in the house. She was motivated to learn to maneuver the stairs so that she could get down there to play. The toy pile on the stairs was a creation of Samuel's. It stayed around for a few days and Samuel wasn't very willing to clean it up.
I watched Oprah's interview today "The Faces of Autism". A few of the families from the "Autism Every Day" video were there. I'm glad there were some hopeful, encouraging comments about living with autism in the family, bit I'm still left with the same impression after watching this as I was after watching the interview on Larry King Live. I don't like how those who are getting media attention are portraying autism. They are very negative and make autism sound like a death sentence, as I've heard others say. As I said before, those of us who do not have this view need to get our voices out there as well.

Autism Speaks - With Many Voices!

Did you happen to see Larry King Live on CNN tonight? He interviewed Bill Cosby, Toni Braxton (the singer whose son was recently diagnosed with autism), Suzanne Wright (founder of Autism Speaks), and several other people.

I do not deny anyone the reactions he or she may have to finding out his or her child is autistic. Just as there is a spectrum of autistic conditions, so there is also a spectrum of parent and family reactions. (I admit that I don't understand some of the reactions and cannot relate to them, but we are all individuals and have varying expectations and outlooks on life) Increasing autism awareness and appealing for help for families of children with autism are good things. I saw both of these portrayed in the interviews last night.

The picture of autism that was portrayed in the interview and in the clips of the video "Autism Every Day" (which were showed between interview segments) however, by no means paints a complete picture of how the population of autistic families is living with autism. It bothers me very much that this picture is incomplete and that the picture that is out there on national television is so negative.

It is time for the rest of us who have different opinions, different outlooks, and different approaches to start filling in the rest of the picture that the public sees. Maybe Autism Awareness Month (April) would be a good time to do this.

I really hope that any parents of newly diagnosed autistic children who saw that interview don't walk away with the picture of despair and frustration that I saw portrayed of autism.