One doctor in California is arguing that trying to diagnose autism without looking at the brain is like trying to diagnose a heart condition without looking at the heart, though the established autism community isn't so sure.
"You have a child that comes to me and mom says, 'Why is my child not talking?'" he said. "We know that speech is in the brain. What's going on in his brain? I think we should answer that and I think we should answer that as objectively as possible."
But that is not the typical method of diagnosing autism. Behavioral tests are the standard. Indeed, neurologists are often only brought in when cases seem unusual. Even then, high-powered MRIs and cutting-edge EEGs are only used selectively.
Interestingly enough this article describes two boys who turned out to have seizure disorders. Whether they have these disorders instead of or in addition to autism is not really clear in the article.
Claire Shipman, one of the authors of the article, raised some interesting questions in the comments section that I think speak well of her understanding of the issues surrounding autism.
I've learned a lot in the last few months as I've pursued this---most especially that clear answers are hard to find on this subject because so much is still being researched and learned. Here's what seems to be the case in terms of these seizures and autism. (In my humble and simple analysis!) At one end of the spectrum--there can be a misdiagnosis. If a child has severe seizures..maybe silent ones...they may have Landau Kleffner syndrome--which is believed to be a totally different disorder. But the strict definition of that is narrow...so that is often unlikely. Many doctors believe though that there may be less severe versions of Landau Kleffener--which is what the first boy is our story is believed to have. Is that autism? does he still have autistic symptoms?? Many would say no--but still debated. And then as you head down the spectrum and look at significant seizures that are not presenting like Landau Kleffner--what are those?? Is that part of autism?? Autistic kids may be prone to seizures, according to research. But it's also possible that there's a sub-group of kids who have autistic symptoms who really have a seizure disorder. Research is going on now on that subject. But would they still be considered autistic?? Unclear. At least it was to me and many of the doctors I talked with. I think they don't know. Part of the issue is that autism is clearly not one "disease." Some doctors say it seems better to think of it as describing symptoms. So if part of the symptoms are seizures..and those can be treated..and then learning can happen..that could be a clear help for children on the "spectrum." But not clear how many could be helped.Emphasis added.
Another comment by a reader gets to the heart of why we haven't pursued any brain scans for our boys as yet.
I am wondering what the dr would say about this situation.....for many of these children it is next to impossible to perform any testing without medicating/sedating them in some way. When you do this, any seizure activity is subdued and may be missed during testing. Also, it is my understanding that unless there is seizure activity occurring at the time of testing, you may not be able to identify any disorder. So even performing a 24 hour EEG may not actually 'catch' anything. The MRI is looking for structural abnormalities, correct? Would you then try several EEG's??
When Ethan was first diagnosed at 2.5 years old we passed on doing any brain scans because we weren't too thrilled at the idea of sedating someone that young. We weren't sure how useful it would have been then in any case. Now that Ethan and Isaiah are a bit older we may pursue the option having some kind of scan done just to see what's there. Ethan may be at a stage where we could forgo sedation but Isaiah always gets nervous around medical personnel (even the kids in the pretend doctor's office in his school classroom made him nervous) and would need to be medicated just to get him in the front door.