Every year the number of children being diagnosed with an autism spectrum disorder grows. It’s gone from 1 in every 1000, to 1 in every 500 to 1 in every 110. It’s been called an “epidemic”, “The New ADHD” or “The new designer disorder”. People have blamed vaccines, pollution, the environment, radio waves, chemicals, processed food and genes. Still, no one knows exactly what causes it.
There is an uproar in the autistic community over the changes that the American Academy of Pediatrics is making to the definitions of autism. They are worried that the criteria for an autism spectrum diagnoses will change so much that their child will no longer be considered autistic. This will limit or eliminate the services and resources they currently get and any help they’re receiving may be cut off.
I can only assume that the reason the American Academy of Pediatrics is revising the criteria is to better diagnose those suspected of having a disorder. I can certainly understand why some people are worried. Those with Aspergers Syndrome will no longer meet the revised definitions. Also, some highly functioning children will be labeled with something more suited to their individual symptoms.
Personally, I think that the number of cases of autism has risen simply because autism as a diagnoses is being used more and more as an umbrella term for many different issues. Not only that, but the more and more parents hear about autism, the more and more SOME of them begin to see signs and symptoms where there truly are none. There have been hundreds of children diagnosed with autism, only to be “undiagnosed” after further treatment.
Last year, a doctor who’s name was never released, diagnosed over a thousand children with autism. More than half of them had their diagnoses removed after an in depth evaluation.
Upon reading a number of reports, I found that there have been no studies done as to how many of the 1 in every 110 have had their diagnoses reversed. So the number that’s being reported has to be much higher than the number of children who legitimately have autism.
I recently met a mother who was convinced that her three year old son had autism. He was well behaved, sitting in the corner of the doctors office by his mothers feet. He was playing with one of those toys where you push the little plastic airplane thingy over the looping wires to the other side. When she spoke to him, he looked at her, responded and followed her directions just fine. When he spoke, it was in short, one word answers, but the words he said, were in direct response to the conversation. He didn’t have noticeable repetition to his movements… but then again, I’m not expert and who’s know their child better than a mother.
Curiosity got the best of me, so I asked her why she thought that.
“He’s so defiant. If I say do something, he says no. He never listens to me.”
I felt like saying “Welcome to the wonderful world of parenting, have you been here long?” Instead, I tried to be helpful. I directed her to an online MCHAT where she could answer some questions. Not only would this reassure her that her son did not, in fact, have autism, but it would let her know how much they really look for when determining who is “at risk.“ Whether she listened to me or brushed me off, I will never know.
Sitting down with Bella’s teacher at her orientation opened my eyes to exactly why they are now changing the guidelines. A mother who’s son was getting speech therapy, flat out asked her to lie to the doctors and tell them he was autistic. Of course, she refused, but couldn’t help but ask why. She openly admitted to wanting the disability check.
I read a news story about a lady in North Carolina who was arrested after CPS found out she was trying to force her five year old to pretend to be autistic, going so far as to make him wear diapers. When they police asked her why, she said she wanted the attention she would get from other people. Another woman named, Rosie Costello, a 46 year old mother of three, was sentenced to only three years in jail after she was caught forcing her children to pretend to be “retarded” in order to collect their SSI checks.
With the new criteria in place, it will be harder for some children to meet them in order to get an autism diagnoses. However, like so many have stated, there are still resources for those children to get, most of them free. Programs like Early Intervention are not just for children with disabilities. They offer speech therapy, occupational therapy and other great programs for a wide variety of children, usually at no cost.
I understand that there are a lot of parents out there who are worried that their children will be kicked off any services they currently receive if their child no longer meets the revised behaviors being looked for. I also understand the other side of the coin. There are more and more children being diagnosed because it’s becoming and easy blanket diagnoses.
While there are children, who actually have autism, waiting in line for months to get the treatment and services they need, there are more and more false diagnoses and fraud cases popping up in record numbers. Whether by quick to diagnose doctors, or awful parents trying to milk the government for the disability checks, this issue needed to be addressed sooner or later.
I’ve read over every revision, many times, and although there was little hope for us to start with, I almost wished that Bella wouldn’t still meet the guidelines for a spectrum disorder.
She does.
I've accepted the fact that my daughter is autistic months ago, but I guess there was always that sliver of chance that maybe she wouldn't be stuck with this label the rest of her life.
We have yet to start any processes of applying for disability for our daughter. We wanted to do all we could to make sure she was getting the help she needed before anything else.
Next post, I’ll tell you how easy it is for a mother to defraud the government for a check, but how hard NY state is making it for me to be seen as my daughter certified, primary caregiver. Talk about a lopsided system.
