Friday, March 4, 2011

The Mission

Since tomorrow is a Saturday, today will act as the ONE year anniversary of my blog and I have something highly relevant to write about.

Over the course of this past year I have written about many topics. There have been highs, and there have been a couple lows, but through it all my mission has been to paint the picture of life on the spectrum.

There have been several times I have written about the Lunch and Learns I have done with Matt at doctor's offices. I find these to be one of the most important things I do because we can have all the insurance coverage in the world, organizations like TouchPoint can have the most effective therapies known to exist, but it all means nothing if doctors aren't educated on the matter.

The reason why I am so fired up about this right now is that I heard about a parent who went to a leading medical facility in Saint Louis with the “finest” doctors and what she heard has disturbed me. The quotes are as follows:

Your son is too young to have autism (he's age 3)

Your child can't have autism, see, he just made eye contact.

Maybe it's just a seizure disorder

Have you tried putting your child in a sleep study?

The ADOS? Oh, a ‘psychologist’ completed that.

If a doctor at a top facility is playing this game, think of how many doctors in the city of Saint Louis, the state of Missouri, the country, and the world are. If doctors are not willing to believe that autism could be what the diagnosis is, some families may never find the right treatments, or perhaps find them too late. There is always hope, but all the research out there shows that the earlier a child receives therapy the chances of a faster rate of growth increase greatly.

Because there is the chance of hope with early diagnosis, I am sickened by a story like this. If autism was new to the world of doctors, say 50 years ago, I could see why there would be ignorance. Am I saying this was good? No. However, with the rates of autism spectrum disorders today hovering around 1 in 100, there is no excuse, none whatsoever, that a doctor should be playing the, "there's no way it's autism because..." game.

Are you as angry as I am? I am furious! Why? If some doctors are playing this ignorance game, there are families with children on the spectrum who may not get the much needed answers until later in life, answers that will lead to early intervention and growth.

I was diagnosed at age 20 (2003), but that truly couldn't be helped because Asperger Syndrome wasn't put in the DSM until 1994. It's not yesterday anymore. It is 2011 and doctors MUST know about the spectrum. It exists and a child may look you in the eye; a child may be able to speak; a child may be able to catch a ball, and just because they can do any of these things, contrary to some doctors’ beliefs, doesn't mean it isn't autism.

The mission has not changed. This is truly a race to raise as much awareness and understanding as possible; to hopefully, somehow, get these doctors to understand. They have to understand! To be perfectly honest I have tears in my eye right now thinking about how many times this autism denial happens. If the family buys into that, even if they know it is autism, then so much time is wasted. The year is 2011 and aren't we more educated than we were 50 years ago? I would like to think so, but if a doctor at a leading institution is saying this than I have to ask, are we really? One case of this is too much. One case of this could set a family back for many years when the answer was there all along. So again, since doctors have the ability to know, are we really ahead of where we used to be?


  1. "With each of these events I am getting more and more confident; not just in my speaking abilities but also in other people. Maybe the tide is turning and I think that there are more professionals out there that want to know the right information about autism than those that don't really care."

    This is what you said yourself in the blog before this one. Yes, we are further than we were 50 years ago, because there are more professionals out there who care than there are that don't. It used to be the other way around. Yes, every professional that's like the one you just described is one too many, but it doesn't mean we haven't moved forward.
    Don't forget what you've written in the blog before this one!

  2. It's just so frustrating. One day a group of professionals are just astounded at what they have learned, but then the next I hear of a doctor that "knows it all" and won't listen or observe what really is the case. I wish I could talk to every doctor because one is too many and because of this I am sure this won't be the last time I forget the positive and see what still needs to be done. Perhaps this is what motivates me.

  3. I think it's good that this gets you fired up. Even if it was just a "particular" doctor. This is the type of thing that gives you the drive to keep speaking, and keep educating. It's ok that this got you upset! I'm with you. Thankfully many are caught early and helped. But we have to be an advocate for the ones who are falling through the cracks....and that's what you are doing. Keep it up!

  4. You wrote this in 2011...which is around 5 years after I accidentally stumbled onto the signs of Aspergers and KNEW it was my daughter, who was about 8. I had (miraculously) already worked out how to handle her, so when it came to "experts"...well she passed the tests so the answer was probably not. Except the testing is based on boys. And girls are not boys. We have gotten over needing a diagnosis now...she has almost finished school, and is doing really well at life. LUCKILY.