Any reader of this blog knows of my disgust with some of the high profile media coverage of autism disorders and autism realities.From the CBC, command central for the "positively unrepresentative of autism disorders" Neurodiversity ideology and the quirky, quarky rhetoric of Michelle Dawson and Dr. Laurent Mottron, to CNN star Dr. Sanjay Gupta's odd obsession with Amanda Baggs, an alleged autistic person whose ""autism insights" and scripted autism videos seem contrived to many autism parents, the most prominent television "news" machines seem intent on Hollywood "Rain Main" style coverage of autism than on reporting the grim realities confronting many persons with autism disorders and their families. The print based media offers more diversity of autism coverage. While the barely autistic, we don't want a cure, movement gets glossy magazine coverage there are some reality based autism news features in the print media.
Faces of Autism is an excellent, reality based, spectrum wide, treatment of autism from journalist Pete McMartin and photographer Glenn Baglo in the The Vancouver Sun which first appeared in April 2007. And today the Montreal Gazette offers an understanding report on some realities facing parents of autistic children. Reporter Elaine Creighton and the Gazette tell it like it is in Raising an autistic child is not easy featuring Ghislaine Noé the mother of a young non-verbal autistic man now living in a rural residence.
The story tells of frightening moments like realizing her then 5 year old son was walking on the roof top to the everyday challenges of brushing teeth and public behavior issues to the sad fact that her son was at some point too much of a challenge for her in an urban environment.
Ms Crieghton and the Gazette tell of the love and compassion this mother has for her autistic son and provides a rare understanding of the challenges of parenting a child with autism:
"When you have an autistic child, you must be mindful of everything. "
autism
Exactly Harold, exactly. It's a combination of love, stress and worry 24/7. There is no relief. It is always there. My son is 43 and has come a long way but he is still autistic. At a recent "significant" surprise birthday party, all was well until the flashes started going on the cameras. Some thought his reaction funny. When in fact, he finds the light painful.
ReplyDeleteHe and his wife are still (nearly four years now) for supervised independent living housing. I worry, like all parents in this situation, what he/they will do when we are no longer here.
Having a child with autism, while the problems change with age, is a lifelong and beyond responsibility.
These "positive" programs are not only unrealistic, they label the rest of us as the fanatics.
Thanks to this and other blogs, that vision is changing.
www.rocktheboatforautism.org
ReplyDeleteWe also have a facebook group... check us out! Rock the boat for Autism.
6 guys will be rowing in 3 Van Duyne row boats from Florida to New Jersey.... a total of 1500 miles to raise money for Autism Society of America!
I must have been in a hurry this morning. I meant to write that "At a recent significant surprise birthday for me...."
ReplyDeleteAnd "He and his wife have been on a waiting list (nearly four years now) for supervised independent living housing.
I've decided to do my senior study on art, poetry and people with severe disabilities. I plan to visit with severe disabled people at an intuition in my town and get to know them well. I am then going to create abstract cubist paintings based on these individuals to raise awareness for people with severe disabilities who need intensive care.
ReplyDeleteIn the most basic sense, through my abstract/cubist paintings I will be attempting to capture the "soul" of the individuals so that others will hopefully begin to realize that these individuals need intensive treatment.
I will be a volunteer at the Special Olympics hosted on the grounds of the institution (and apparently such places are horrible, horrible enough to host a Special Olympics and cook-out for their patients!) and begin from there. Hopefully, I will be able to get to know the patients and institution better if I will be allowed repeated visits.
My project(s) will hopefully raise awareness about Reality. I also hope to help parents realize that Facilitated Communication is a complete psuedoscientific scam.
It's time we love severely disabled people for who they are, not who we want them to be.
Great post! I work with an health care video website, called icyou. I thought you may enjoy this woman's video about her son's journey and life with autism.
ReplyDeletehttp://www.icyou.com/topics/diseases-conditions/autism/life-autism-my-sons-journey-my-hardest-fight+