Friday, December 16, 2011

Note: This is one of the most difficult blog posts I've EVER written/posted. It has taken me two days to get my thoughts in some semblance of order and calm my fury enough to put them into words. No promises, but I'll do my best to keep my anger under control while I write.

The LA Times is currently running a four part series on autism. One part of this series focused on whether there is an increase in autism or increase in the diagnosis of autism. An entertainment attorney commented on the article saying:

"Many parents today want a diagnosis of autism spectrum for their child, not only because there is a great deal of funding allocated for services for those children, as the news article explains, but also because this qualifies the child or family to collect a good SSI payment each month. If a family can get a few kids diagnosed with such things, the family can live off the payments. This was caused because welfare payments are so low, welfare is so hard to get, and intact families with both parents present do not qualify for welfare. The real story would be to check out what percentage of families with child with an autism diagnose are collecting SSI. That is where you will find the real secret behind this "epidemic." Also, school districts that will receive extra funding for each child with autism will be far more likely to make such a diagnosis.When I was a kid, there were kids who kept track of details, counted things, paid little attention to others, and seemed socially awkward. There were called future accountants.I realize there are actual cases of autism, which seems to be a form of retardation. A lot of this spectrum stuff, I think, is based on wanting to collect available funds, without regard for the fact it stigmatizes the children for life to have such a diagnosis.Anyone who writes a scathing reply should reveal if their family is collecting SSI or if they or their school is in any way collecting funds based on autism."

The portions of this uninformed, ignorant person's comments that truly set me off are the highlighted sentences. The entire diatribe is offensive to both parents of and children on the autism spectrum, but my focus is on the over-the-top moronic statements. If I covered the entire comment this would be a novella, not a blog post.I have wanted a lot of things in my life but never ONCE did I WANT my child to be diagnosed with a neurological condition so our family could roll in the big bucks of SSI. And as we all know $679.00 per month (the max SSI monthly payment) puts you in that upper 2% tax bracket if you are "living off the payments". I can assure you that NOT ONE family who receives SSI payments for their autistic child is now living high on the hog. And to say that parents chase down a diagnosis of autism for a whopping $679/month is cold, cruel and disgusting. There is NO SHAME in finding and using every resource available to help your child with autism!

I have to hit on the schools receiving extra funding portion of her comment as well. In our school district the Autism Consultant position was cut from the budget this year, even though we have had an influx of children with autism both starting school for the first time and current students who have been recently diagnosed. Our district shares ONE OT with six elementary schools, 2 middle schools and a large high school. Speech Language Pathologists are shared among schools and we have had special education aide positions cut. The staff my children work with are remarkable 99% of the time, but let me tell you the school was in no hurry what so ever to give either of my boys an educational diagnosis of autism. In fact, my oldest child on the spectrum had a medical diagnosis for nearly a year before I could even get the district to agree to an evaluation for ASD. I am not always the biggest fan of our district's decisions, but I know for a fact that they aren't handing out educational diagnosis of autism left and right.

Autism is a form of mental retardation?! WHOA! I'm sure in the pursuit of a career representing entertainers she has amassed a great deal of knowledge on entertainment law but when it comes to autism she is a Grade A Moron . I can say that with great confidence because my 12 year old son with autism spectrum disorder has been called things such as genius, gifted and brilliant when it comes to academics. He has the social grace of a six year old most days, cannot function in the general education environment YET and is the stuff of legends among staff members at two elementary schools and one middle school because of the things he says and his penchant for (a) locking himself inside his locker and (b) running when he becomes stressed or upset. (The child hurdled the Dean of Students last year while running from a situation. I'll tell you all about that another time, promise.) So you can trust me when I say that autism IS NOT a form of retardation.

Let's discuss the "stigma for life" that accompanies an autism spectrum diagnosis. Perhaps instead of making wild unfounded and hurtful accusations against families who already have more than enough to deal with on a daily basis, this attorney could her voice and time to DESTIGMATIZE an autism diagnosis. My boys on the spectrum are hilarious, bright, loving people. Stigma is defined by as "1. A mark of disgrace or infamy; a stain or reproach, as on one's reputation. 2. Medicine/Medical A mental or physical mark that is characteristic of a defect or disease."Autism is not a defect, disgrace, stain or reproach of a child's character. Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior (definition taken from Wikipedia). So take your stigma and shove it where the sun don't shine. (Sorry, lapse in anger management skills there.)

The major problem with comments such as those made by this ignorant woman is that others read her misinformation and then feed their negative perceptions of autism. Yes, autism is a pain in the ass some days. Winning the battle against autism demands hard work from a child, their family and teachers every day. It's frustrating and it's exhausting for everyone involved a lot of the time. But autism sure as hell isn't a money making endeavor, form of retardation or a stigma.

Before making generalizations and comments about autism I strongly suggest reading this article It will save you a lot of embarrassment and maybe even each you a thing or two.

1 comment:

  1. Thanks for posting this, I agree with you completely.


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