Here’s a story from the September 18th Oprah TV show that we thought might be of interest to the Rett Syndrome Community. Model, television personality and actress Jenny McCarthy, mother of a son named Evan who has Autism has a new book called Louder Than Words.
She was there to promote her new book and to share her story about the techniques she has learned that have helped her son and her cope with the challenges of Autism. She was joined by friend and actress Holly Robinson Peete, also a mother of a son with Autism.
There was much discussion after the show online, but I found one particular viewer comment quite thought provoking. It was from a man with Asperger’s/High Functioning Autism. He has two son’s with Asperger’s. He indicated that every time Jenny and Holly insisted that their sons were “normal” children trapped behind Autism that bothered him. He was by far in the minority of those who posted there opinions after the show. Most people were grateful and thankful for all that Jenny and Holly had to say. In this man’s case, he was grateful and thankful for the opportunity to say this to them and what we call the “Oprah Community”:
“I am a normal Autistic and all I want is to be valued for who I am not be viewed as disordered. The medical community saw a list of common characteristics in a group of people decided it was a disorder and slapped a label on it. That doesn’t make it a diagnosis it makes it a value judgment. People with Autism aren’t disordered they simply have more work to do than the rest of you and by working with them more is required of you as well. Don’t grieve your less than perfect child or your less than perfect life. Instead celebrate the gift of each moment and walk the path of opportunity your child’s life with bring. Don’t think of your child in terms of what they don’t do or don’t give you that you think they should. Challenge your own perceptions about who you think your child ought to be before you harm your child because of your own subjectivity.”
Like I said, it was quite thought provoking. If you’d care to share your comments on the subject, we’d like to hear them. Just click on the comments link below.
As always we appreciate your continued support and encouragement at Rett Syndrome Magazine.
Greg
I got into a situation back in February of 2007 right after the Rett research mice were “cured.” I ran across a blog created by a woman who calls herself the Rett Devil. She, along with several of her friends who are “high functioning” are offended by society wanting to find a cure for autism and related “disorders.” I tried to explain on this blog that the reason research for treatments are necessary are because there are individuals (like my 7 year old daughter and unlike those who can function) who cannot feed themselves, walk, talk, etc. and are completely dependent on their families and caregivers to interpret their needs and then take care of those needs. It is in these instances that a cure or some type of treatments would improve quality of life. If individuals who can function feel they do not need to be “cured,” then they don’t have to be. My comments on that particular blog were not appreciated, and I felt that they were not willing to see it from anyone else’s point of view. My hoping for some relief for my daughter were met with a response questioning my motives – “Are you wanting relief for your daughter or yourself?” How unfortunate that there are people so unwilling to accept that what is right for them isn’t right for another individual. I guess that’s what they feel as well. My point of view: Each individual should be allowed their own choice. The problem for most individuals with Rett is, they cannot make their wishes known and it is up to the caregivers/families to make the choice for them. I would like to see my daughter’s world opened up someday, and I believe she would like that too.