As parents of children with autism spectrum disorders we all have to learn how to come to grips with the realities of our children's autism disorders. Some do the best they can to raise their child to the best of their ability to prepare the child to live the fullest life possible. Some become fierce advocates for services, treatments, research and cures for their child and others with autism disorders. I respect most parent's approaches. One approach that I do not respect, and have never pretended to respect, is to look at my son's autism disorder as a blessing.
I have on several occasions criticized, even ridiculed, Estee Klar, author of the Joy of Autism blog, for promoting autism as a joy or blessing. Yesterday Easter Seals, an organization active in autism advocacy, re-published the views of Barbara Gaither, mother of an autistic child who, like Ms Klar, views her child's autism disorder as a blessing for which she is thankful:
"As the years passed since that initial diagnosis in 2002, I’ve grown more and more thankful for him and his diagnosis. Many would think that I’m crazy — and maybe I am a bit, but he is such a tremendous joy to me and our entire family. He has taught me not to take the little things in life for granted — and by watching him grow and learn, I have learned so very much.
It’s simply amazing. Sometimes, I wonder what life without him would be like, or even life without him being autistic and I cannot imagine it. At this point I don’t even want to. I wouldn’t change a thing about him even if I could."
Ms Gaither is entitled to her own views. Easter Seals, in a democracy, is also entitled to promote her views. Personally I find repugnant the idea of taking joy in, or giving thanks for the fact that my son has a disorder. I can not accept the idea of being thankful that your own child lacks all the abilities to function in the real world, to live a full and complete life as possible, just because it makes a parent feel better to think that way.
I love my son Conor dearly. I regularly feature picture sets of him with he and I enjoying the outdoors and the natural beauty of the city of Fredericton. I love being with him every chance I get and I can not begin to describe how much fun it is to hang out with him or what a great sense of humor he has.
Conor has an Autistic Disorder diagnosis, assessed with profound developmental delays. He has, particularly in the past bitten himself. He has punched holes in glass windows and cut his hands. I can not give thanks for a disorder which results in injury to my son.
At 13 it is clear he will never live an independent life. I have, as an active autism advocate here in New Brunswick, Canada visited institutions where some autistic adults have lived. While I respect the people in those institutions for doing the best they can for the autistic adults in their care it is not a future that I wish for my son. It is not a future, for my son, that I would celebrate as a blessing for which I should be thankful.
I want to see Conor live the fullest, happiest life possible. I want him to have the opportunity of treatment for his autism disorder. If the "it's gotta be genetic" approach to autism research ever truly loses its sway and cures are sought and found I would want Conor to receive real blessings ... treatments or cures which help him live a fuller life when I am gone.
I do not lose sight of the fact that Conor's autism is a ... disorder. One that will continue to restrict his life long after I can care for him, long after I have finished my tour of this planet.
Love my son and be thankful for every minute I am with him? Absolutely.
Give thanks that my son has a serious autism disorder? Never.
autism
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