NO LONGER ALONE
I wanted to thank you for your recent article in autism (Cover Story, "Alone In Autism," by Alyssa Abkowitz, Sept. 20-26). It is apparent that you attempted to portray both ends of the spectrum that is autism. For that, I thank you. However, I am concerned that the picture you painted of autism is very dreary. The individual you chose to represent Asperger's Syndrome is dressed in "goth," and the individual you chose to represent autism is basically non-functional. What kind of message does this send to parents of children who are being newly diagnosed on a daily basis? News stories should endeavor to inspire hope in better diagnostic skills, should stress the absolute importance of early intervention prior to age 3, and should discuss that most individuals with autism fall somewhere in the mild to moderate range. It is clear that your article was intended to discuss the financial burden on both states and school districts, but it is the emotional health and well-being of the family unit, as well as the individual with autism, that should be paramount. Without early intervention, many children would end up like "Blake." There is no mention in your article of the importance of sensory integration techniques (FYI, the "swinging" you mention with Mary Grace). As a parent of two children with autism, I have firsthand experienced the difficulties and joys of this condition. I do not, however, view autism as a curse or as something that holds us back — autism is simply a different way of thinking.
Dr. Jennifer Perkins
Via website
I think it is very important to note that there has NEVER been a reputable study linking autism to any vaccine. One study drew this conclusion from their data and was subsequently identified as highly flawed. Enjoyed the article.
C. Adams
Via website
It's OK to be overwhelmed. It's perfectly fine to feel that your other children deserve better than the leftover time and attention they get now. You can explore, and even choose, your options (other than home care) and still love your child. Imagine being able to love your child without frustration and exhaustion overshadowing that affection. How wonderful would it be to be able to really appreciate your child? I have worked for years with the mentally and physically retarded, and have a brother with Downs. I have little patience for these martyred parents. If you have other children, they need you, too. I know; I'm an other child. There are appropriate alternatives to institutionalization or home care for eternity. Work with your local ARC (Association for Retarded Citizens). I worked in a total care group home, and our clients' quality of life was far superior to what they could have had at home simply because we were there ONLY to care for them. For anyone who finds themselves in the position of raising a profoundly disabled child, there are alternatives. Look for your state MR/DD Board, or call Children's Rehab for your area.
Evalina
Via website
My 12-year-old daughter has Asperger's syndrome and is very much like Mary Grace. She is still trying to find her way socially. She too is gifted, reading at 3, out-performing her peers. She is not simply intellectually above them; she has little understanding of her peers. We have been looking for other girls in particular with Asperger's syndrome. You often hear about boys with autism but girls seem to be a rare find.
Carol
Via website
I think it's wonderful that these parents have the strength to take care of these disabled children. I wonder though if a more enlightened society would euthanize the really bad cases. I know it sounds cruel, but sometimes I feel keeping them alive is even worse. Are these autistic kids really happy being alive? Is it true that ignorance is bliss, or are they living a constant nightmare? The parents are the ones that lose the most. The costs are enormous, the time drain is incredible, and the children will never be normal. Maybe in the end it doesn't really matter though. When modern technology leaves and we are no longer wealthy, the only alternative will be to "let them go." This is why the Native Americans set people like this loose into the wild. I just feel sorry for the parents who have to spend the rest of their lives with these man-children.
Anonymous
Via website
Being the mother of 2, yes 2, autistic sons of varying abilities ages 6 and 8; I enjoyed the article immensely. It always makes me feel connected to hear other stories — we are not alone. However, the thought of euthanasia — totally don't get that. If you have spent much time with autistic children you will see that they have a kind of angelic innocence about them. Even when my 6-year-old oversized son is in the middle of a "tantrum," I can still get a glimpse of that "angel" within. He has taught me so much; I would never have learned so much about autism had I not been thrust into this confusing world. But all of these children have a purpose, they all touch lives. Even my son, disabled as he is, played a major role in the emotional recovery of a teacher's associate who had two children killed in an accident two years ago. Everyone is here for a purpose; it is just sometimes harder to figure out what it is. People in other cultures deal with relatively minor issues with stoning and other brutal methods; I don't see that as a basis for treating today's individuals in the same manner. I would like to think we all are a bit more enlightened.
Margo
Via website
This article appears in Oct 4-10, 2006.
