Remember that Temple Grandin,perhaps America’s most famous person with autism, when asked if she wanted to be cured, declined, explaining, “I wouldn’t be me.” Let’s all remember that sophisticated thinking, like generous living, demands complexity. (Grandin takes drugs to alleviate some of the effects — anxiety for example — of autism). It’s too easy to be reductive and thereby demonize a provocative gesture.
It truly escapes me how egocentric some criticism can appear. I really see this and your blog posts as advocating for the future and a new model for the societal peers and our children who will share this world. Rome was not built in a dayand you are laying a great foundation — even if it is years in the making. I salute you.
I just wanted to add that your are presenting the Joy of Autism. Would these parents say there is NO joy in autism, none? Not ever? Even the ones who paint autism as demonic, usually can admit that their children enjoy life sometimes, and even if theres don’t other autistic people DO have joy. If there is an aspect of autism that is joyous are we never allowed to discuss it?
I am an autistic adult and for those that compare autism to cancer and leukemia, or TAAP hurting the advocacy for services this is what I have to say:
Autism isn’t like cancer or leukemia. Those kill people. Autism doesn’t kill people, unless they are murdered. Then MURDER killed that person.
As for Miss It Doesn’t Help “Our” Cause: Watch who’s cause you’re trying to further. Making children, adolescents, adults on the spectrum ACCEPTED helps your kids cause. It helps the AUTISTIC cause. And our cause takes precidence over ’causes’ that seek to eliminate us. All y’all say you want to raise awareness, here it is: raising AWARENESS, not HORROR. There are a lot of people in history who have very bad names because they ran similar “awareness/horror” and eugenics plans.
As autism is a life long condition surely it is pertinent to discuss what can be done to make autism “a happy place.” Ed Schneider has written a book, “Living the Good Life with Autism,” arguing “that if people with high-functioning autism and Asperger Syndrome are left to their own devices they are capable of making lives for themselves that are rich and rewarding.” (publisher’s blurb).
Just to say that these are (I presume) Ed’s words. Autism acceptance surely means making autism a happy place were autistic people of all levels of functioning or ability and their loved ones can enjoy a good life.
As parent to an autistic child considered to be ‘classically’ autistic (other terminology includes low functioning/Kanners) one of the most troubling aspects of the international autism community (by which I mean the self appointed organisations of largely non-autistic people)as oppose to the autistic community (by which I mean the organisations comprised of a mixture of autistic and non-autistic people, or solely autistic people) is the way in which a lot of people are opposed to any attempt to present a non-tragic face to autism.
There is no denial that raising a child who has special needs is difficult but it worries me that people want to compare an attempt to look at a less negative aspect of autism to incest and cancer.
It seems to me that there is a large element of pre-judging occurring here. Both in terms of what the event itself is and in terms of what autism ‘must be’ for all people.
To me it is not only possible, but *vital* to separate the issues concerned. Yes, a battle for services is important but it is of equal importance to see that autistic people of any and all ages are ascapable and as entitled to joy as anybody else. I don’t see this event as an attempt to sugarcoat anything or to misrepresent anyone. If it
was I would not want to be associated with it.
Recently in the US, the organisation Autism Speaks released a short film entitled ‘Autism Every Day’. During the course of this film the only side of autism that was presented was an unremittingly negative one. Children were badgered into meltdowns and situations, by the admission of the Director, were manipulated to show autism in the
worst possible light. One segment showed a mother telling how she considered killing herself and her autistic daughter to escape the misery of autism. She related this incident whilst her daughter was in
the room with her.
Consider the differences between this film and the Joy of Autism event. The film was made for an organisation called Autism Speaks – the organisation wishes to push themselves as the voice of autism,that they are they authority on the subject. This event is organised by an organisation called The Autism Acceptance Project – referring to a project to promote acceptance.
The film is entitled ‘Autism Every Day’. The film-makers wish to present the idea that the unremittingly negative subject matter is the sole reality of ‘autism every day’. By contrast TAAP’s Joy of Autism,by its very title, indicates focussing on one aspect of autism. It
doesn’t seek to eliminate the negative, merely to accentuate the positive.
I can’t see anything wrong with that aim. It puzzles me that anyone can.
As much as we love our daughter and are so proud of the progress she has made, I do not consider severe autism to be a joy.
My name is Cole Kingsbury, being a proud Autistic, approve your mission statement on a 115% basis!
Finally…I’m relieved as a mother to have an event of acceptance…I’m so tired of all the doom and gloom.
I watched the Gill Deacon show yesterday because I knew the topic of Autism was going to be discussed. My five year old grandson was diagnosed with Aperger’s Syndrome last May. I was impressed with what you are trying to accomplish! I did not feel that Gill Deacon completely understood and wanted to bang my own head in frustration at some of her comments but at least she was trying!
One of the things that the general public really misunderstands is a “Meltdown” and even educated people think a child like my grandson is just spoiled and having a temper tantrum. The television show, “The Nanny” has made this viewpoint still stronger. My daughter has found an Aspergers support group helpful in dealing with this but still when a meltdown occurs in a public place, she hears the “tsk,tsks” and comments about poor parenting skills etc!
I wish you luck in your mission! It is of huge importance!
Victoria Bradford B.A. & Griffin’s Grandma