I wrote about it and I'm curious to know what this autism community thinks. You can find my post here: http://www.whininginmysleep.com
Thanks for your input!
I get offended by the "yay, autism!" crowd who deny the reality of my daughter's suffering and who are trying to stop the search for a cure. I really don't get it- you don't see people with other medical conditions trying to deny the reality of their suffering or rejecting the search for a cure.
I don't find it offensive at all. The woman stated what is reality for many people. Maybe autistics themselves don't agree and find her comments offensive, but as a parent and 24/7 caregiver she gave an accurate description of many, not all, of my days. The woman's comments were a bit harsh, but they are a reality to many people caring for those on the spectrum. Jmo. No organization is perfect and autism speaks has provided me with invaluable resources when I could find them nowhere else.
My daughter is not a "mistake". She is a wonderful, sweet little girl who is suffering from a medical disorder that is keeping her from being the person she was meant to be. Autism is not something that she IS, it is something that she HAS. And something that I pray every day that doctors will find a cure for.
Autism is merely a common symptom of dozens of disorders (some genetic, metabolic, immune, etc. and a dozen are already known but for majority unknown). As such, it will be hard for organization such as Autism Speak to represent the various sub-groups / balancing the need, but I agree with Suzanne's approach of highlighting the "worst" rather than the "best" side of autism - that is the most effective way to raise $/awareness for research, interventions, and support which is badly needed. It is very important to recognize that there are many different disorders at play here, so if we can prevent even a single child from getting autism, or better yet, reversing it (from known causes). As an example, here is a case of regressive autism due to encephalitis after febrile illness that was reversed since the doctor caught it in time.
http://www.ncbi.nlm.nih.gov/pubmed/24092894
For this child to have not been diagnosed in time, and then grow into a non-verbal adult with "yay, autism" mentality would be quite sad.
Maybe I may seem a bit terrible for this. I believe that because one of the main features of autism is impairment in the ability to put themselves in another person's shoes and show empathy, there is no doubt there is a somewhat insensitivity to the difficulties experienced by parents/caregivers, on the part of now adult autistics. Many autistics have no idea what it was like to care for them, even as hf as they may be. Of course many of the people hating suzanne wright for her comments feel the way they do, many of them being autistics. They have little if any perspective. I'm actually disgusted that Ms. Wright told the ugly truth, and she is persecuted for it. Yes, there are many interesting quirks and some great things about autism, but if be lying if I said I was jumping for joy on the day of diagnosis. Sorry, it's not to the liking of many, but Suzanne had many undeniable truths in her statement.