The Autism Confusion

The day the new Autism statistics were announced to be 1 in 88 children, I started this post.  It was right as we were coming into Autism Awareness month, another day that I'd start a post.  I was still working on this one.  Here I sit today, still working on this one.  As the statistics came out quietly, they still shot through the internet.  They lit up Facebook pages, message boards, and conversations the world over.  The conversation always seemed to turn to the opinion of those actually dealing with Autism. 

The questions started pouring in, "so what do you think about the new statistics?", "what do you think caused the increase?", "how realistic do you think they are?"  I'd love to have all the answers.  I'd love for anyone to have all the answers.  I'd love to say that it is vaccines.  But I worry how my friends with Autistic kids who've never had a single vaccine would react.  I'd love to say it's the hormones and antibiotics in dairy and meat.  But I wonder how my vegan friends with an Autistic kid would react.  If I said it was a reactive attachment issue, I may insult all the attachment parents of Autistic kids.

The next best thing to say, would be what the government is trying to say.  It's just a response to better diagnosis.  You look at the study information and the sample group used is 8 years old.  That means anyone not diagnosed yet wasn't counted.  Do you know how many kids are not diagnosed until 9, 10, 13, 15...?  I'd love to know more about the cities used, not what they tell us but what the parents in those cities are actually saying.  Is it easy to be diagnosed in that city?  We are rural suburban, but we are only 30 minutes from the state capital.  I'd describe our area as average.  I say that because there are definitely rural areas that have it much worse.  Just as I am sure those living near a much larger university medical center have it better.  Using our city as an example, it can take years to get an Autism diagnosis.  If you are lucky, or you are more moderate, or you are a boy you may get a diagnosis sooner when someone, in the know, spots the signs.  Even in a perfect world you could be put on a year + long waiting list to go to one of very few places that diagnose Autism here.  A place that doesn't take insurance so it is even harder for the middle class.  They take Medicaid so if you have that you're good.  If you're upper middle class, you have the cash or flex to pay.  If you don't fall into either of those categories you have to come up with the $400+ per visit (and it could take 4+ visits) cash, on the spot, to pay for your diagnosis.  If you happen to have a doctor that is willing to refer you, and knows where to refer you, you may be able to get into the Disabilities and Special Needs, Autism division for free (and a much longer wait).  If you aren't in a perfect world, and you don't have a textbook case of Autism, you may be bounced around early intervention, school districts, special education, psychiatrists, psychologists, therapists, etc as you possibly place hope on misdiagnosis, just looking for an answer.  With diagnosis occurring like this, and the number of people I know of, with children over age 8, still waiting for a diagnosis, I find "better diagnosis" to only mean that the rates are going to continue to rise then.  Because we are far from good at diagnosing Autism.

Do I think those numbers are padded?  Sure, I think that some kids are being diagnosed by people not qualified to make that diagnosis.  Sure, I think kids are being diagnosed with Autism to receive better services.  Do I think that is the majority?  No way.  Even the small amount of children that fall into this category, I am sure are countered by the number of children still waiting for diagnosis.

I have written and rewritten because the only thing this post does is create confusion.  I have no actual answers in this post.  I have tried to clean it up, I have tried to say something knowledgeable, but all that's there is confusion.  I realised that is all anyone has.  Confusion.  I tried writing about the "cures", the other controversies.  Gluten free diets, organic, chelation, supplements vs Applied Behavior, therapies, special education.  But I have no answer for that either, because I don't know any kids who have been "cured" from true Autism.  I've seen significant improvement on both sides but Autism is still there.  Adding that debate only added more.  Confusion.  The debate between research funding and treatment funding.  If you think that the only sides are Autistic parents and Neurotypical parents, it is far from the truth.  There are those for a "cure" and those against a "cure".  There are those that feel strongly about 1 way of treating vs another.  There are those with strong feelings about a cause.  But it all leads the same way, there is still no "cure".  All that's left is more.  Confusion.  We all want an answer, we all know there is no point in dwelling on the past.  Yet we all search every aspect of every day of our child's life looking for where this came from.  You think if you knew the answer you could fix it.  Every single Autistic child is different.  What you worry about, a different child never had, what they worry about yours never had.  Confusion.  This is the face of Autism.