Not every peiatrician considers Fragile X to be any part of an autism spectrum disorder. Any social problems they have is shyness and social anxiety, not the core defining feature that Kanner described, an indifference to the existence of others including parents,siblings and primary care givers.

What creates a potentially devating problem is those researchers who misinterpret mentally retarded Fragile X boys as ‘autistic’ is that they are now using drug therapies that hclaim may be applicable to autistic children without Fragile X.

Regarding those emotional breakdowns once a month—-more than know how that feels. Knowing that my son is in a school where he’s happy and his needs attended to and understood—that’s why I no longer have this awful gnawing pain at the bottom of my stomach and why I don’t keep checking my cell phone to see if the school is calling. Even just being able to go to the grocery store and knowing that Charlie won’t try to eat the food or get upset when he can’t get something he wants—-those are reasons that stress has lessened for me.

I just started a support group where we live and school frustrations and finances are the number one stresses. I probably have an emotional breakdown about once a month.

Funny, my husband went to the doctor yesterday because he just hasnt’ been feeling well. The doctor said that he seemed fine, so, asked if he was getting enough sleep or under any major stress…hmmmm, you think???

I just wish all these famous voices would put some focus on this issue.

“I have reached the point where I don’t really care about the “why” but I care about getting them the services they need to have a productive life.”

That’s sums up why I’m sitting in this rental condo right now…….

“Do the anti-vaxers feel then no child was ‘poisoned’ prior to 1990?”

No—for instance, Dan Olmsted has written quite a bit about the children in the 1943 article by Kanner and suggested that they had other types of “poisoning.” Here I referred to his discussion of Still’s and Pink’s and he’s elsewhere written about how some of those children in that original Kanner study had parents who were chemists or other positions that involved them working with chemical and toxic substances.

One way to read what Olmsted has written is that he is “reading back” retroactively and re-diagnosing autistic children from the past as having had some sort of poisoning—not necessarily from a vaccine. It’s a similar move to how Kirby has been trying to redefine (”rebrand” as Orac puts it) autism as a mitochondrial disorder and, last year, as some kind of neurological damage caused by toxins.

Glad to see you get that mention in Forbes.

With my first born, I just had no clue what to look for and just thought he was a late talker and quirky. With my youngest, I knew better.

Any boy do I wish people like Jenny McCarthy would be as outraged about the fact that those of us who don’t make millions of dollars can’t get services for our chidlren…she always neglects to discuss the amount of therapy her son has received. We are just grateful that we have grandparents who can help….our children would be at a huge disadvantage otherwise. My heart breaks for all the kids who miss out on therapy because of money.

Interesting note, I spoke with my CARD representative about school etc.. and she said that in our state the ASD criteria is changing, to make it easier for kids to get in-school services, but she said some of these chidlren do not have autism. A lot of kids with Asperger’s were missing out on services, but she said that she is seeing that a lot of these kids don’t truly have any form of ASD.

And Anne…you brought up something that made me think about my boys. There are certain aspects of their autism that is very similar, how they verbally are developing, their stimming behaviours but I think too that some people forget personality. Dalton is sweet, gentle and tender hearted, Jake is sweet, rough and stubborn…or as I like to say “determined”. People want to classify them and stick them both in the same box, but they are two different boys. You are right, they want to look at “what they can and can’t do” instead of looking at them a “who” they are. Whenever I speak to some people in the school system about my expectations they look at me like I have three heads. My new phrase (I have stolen from someone else) is “they don’t have a learning disability, you have a teaching disability” The sad thing is that they want to write their future now…they are 2 and 5 years-old…no one can define the adults they will become.