Tuesday, April 3, 2012

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.


  1. My 5 year old son was diagnosed 6 months ago & we were very proactive, involved and persistent probably to the annoyance of some docs that we have since stopped seeing due to their lack of motivation. Wait & see didn't and does not fly with us.

    I agree with your sentiments. It is confusing and no two individuals with autism are going to present exactly the same way, which makes it even more challenging. It's not like diabetes. A simple blood test tells you if you have it or not. In black & white. There is still a lot of gray area with autism.

    From following your blog, I gather none of your children have autism. You seem quite knowledgable. Thank you for taking the time and thought to write this post!

  2. Yes, such a gray area. As a parent it really doesn't matter the diagnosis, as long as you can get them the help they need, so they can become the child you know they want to be. But, a lot of times, the right help is so dependant on having that diagnosis.

    What makes it even harder is that the symptoms present themselves even more differently from girls to boys. My daughter struggled through several misdiagnosis before her diagnosis. A lot of the things for the other diagnosis helped anyway. But having the right diagnosis is like having the key. That knowledge gives the specialists that little nudge in the right direction. The nudge that leads to a slightly more specialized help. Help that makes a world of difference. They will always have autism but that doesn't mean they can't be happy the way they are.

    Oh, and my daughters official diagnosis is "autism". 5 years ago I was clueless. Autism to me was the extreme version you see on tv, non verbal, unemotional children. If I had known what autism truly was I would have also persisted a pushed for the diagnosis. Instead I went every which way, completely confused as to why she was a little of this and a little of tha. But nothing completely explained all the symptoms, something was missing. It was the social aspects, for te most part. Thankfully a school psychologist mentioned aspergers. That led to a 2nd opinion psychiatrist who also mentioned it. That led us to the developmental clinic that knew fairly quickly that was the answer. She is autistic though because she has/had speech delays. I do not hide it on the blog but since she is 12 I also respect her privacy and therefore do not dwell on it either. I think the last post on it was probably last April.

  3. My son's dx is autistic disorder. It is amazing how things change once somebody (teacher, doctor, etc) does key in. We practically begged for someone to listen. Trying to find resources without support was challenging. Now with the label, the amount of resources is overwhelming. I would love to figure out a way to get those resources more available pre-diagnosis (in my spare time-haha).

    I can totally understand respecting your daughter's privacy.

  4. True, I'm sure the diagnostic code technically says "autistic disorder". We actually had an Iep when she was in 3 and 4 yr old special education but they dismissed her from it going into K. So the new school wouldn't give her one. We spent 4 years fighting for another one. The school didn't find a quiet child who shut down whenever something wasn't the way they expected it to be, I be a problem. The minute it changed to her melting down over those things or frustration over schoolwork (that we'd been complaining about for 4 yrs too) the teachers started begging. But it was the minute I delivered the report with the diagnosis that they actually started jumping. I'm sure some of it is money though, autism is one of the highest funded Iep