Holly Robinson Peete, a wonderful actress, model and mom wrote a great article for Huffington Post on the Eight Facts About Autism Not Covered by the Media.
I cried with agreement reading every point. What struck true to me most was the fact that “Autism is Unaffordable”. Proper private therapy, if you are very wealthy, is extremely expensive. At $100 to $150 a session, 25 to 30 hours a week, we are talking $7 – $10,000 per month. If you are middle class, it is impossible to afford and if you are poor, it is unattainable. I know people who have taken out second mortgages to pay for therapy. I know others who hire lawyers to try to get state aid. I know some people who give up and surrender to the fact that their child will never be able to function in typical society because therapy is out of their reach. And that is just the financial obstacle.
What about accessibility? How many good, trained ABA therapists are there? How many of them are overbooked or have 25-30 hours to spare? How many autism schools have outreach programs to accommodate children under 3? How many openings are there in programs of that kind? Not many. The demand is very high.
And state early intervention programs, like the one we have in NJ, are not designed to help “cure” a child. They are educational models designed to instruct the families on how to help the child until he/she reaches school age when the education is taken over by the school district at age 3. Therapy hours are hard to come by. Therapists are not always the best, but there are some great ones. The organization and effectiveness of the program are lacking and the administration can be horrific. I have three state agencies overseeing my daughter’s therapy. They argue with one another, they don’t always do their jobs and they are scrutinized for giving out too many hours. In NJ, early intervention is not free — we personally have a very high cost-share payment, but not nearly as high if we paid for therapy privately.
But I ask – WHY is it so difficult to get treatment for this disorder? Why can only the extremely wealthy afford it? Why with a national autism rate of 1 in 150 is treatment not covered by health insurance? Why isn’t treating this disorder considered a priority? What is going to happen to this generation of children that are going untreated or under-treated?
It is so frustrating for a parent – being thrust into this world — to make sense of the apathy and lack of education surrounding this disorder. You feel your child will be destined to be lost forever.
As I sat in my dining room last week after my IFSP meeting, I was numb with disbelief. I could not believe that treating my daughter, a toddler, who has autism, was not considered important to my state service coordinator. Why does no one want to help her turn this disorder around? Is she so far gone? Is she a lost cause? I don’t think so.
If Ava has any other disease or disorder – diabetes, for example, she would be treated without a stigma attached. But autism carries its own baggage with it. There is no crystal ball, there is no cure, there is no blood test to make it seem real.
I remember the AIDS crisis in its infancy. Two good friends of mine contracted the HIV virus in the mid-1980s and died within a year of diagnosis. It was a horrible, painful death for both of them with so much suffering was endured. What was most disturbing, was that people were uneducated about AIDS then. I remember nurses refusing to come into my friends’ rooms. I remember doctors not wanting to treat them. I remember people were afraid and their illnesses were “covered up”. I think both of them would have survived if they were diagnosed today – given the advancement in AIDS medications and care. But both of them died too soon.
Is autism the same? Does it have a stigma that makes people afraid? It makes the government afraid or my daughter would be given the best treatment available without questioning me as if I was a nut case begging for the unattainable. It has a stigma in society — no one knows what autism is. No one is hard-pressed for a cure or research unless they have a child with autism. And insurance companies are afraid of incurring the costs associated with autism. Families are afraid too — some families stick their heads in the sand and hope autism just goes away.