Last night, I watched a program called Decoding Autism, put out by New Jersey PBS and, apparently Autism Speaks. You can actually watch it online here. This program is not new. You might have seen and discussed it already but I only just saw it for the first time. It left me feeling sad and disappointed until I found something that made me hopeful in the end.
Perhaps, my mood is all a part of the acceptance process. Maybe, I have not yet completed acceptance in relation to my son’s autism diagnosis because of the desire to find alternative treatments for his autism. I’m not saying I am not happy with ABA – I know it to be the best thing to have happened to my son. However, I want every possible available treatment for him.
In any event, this program did not leave me with a sense of hope. It left me wondering what to do, where to focus, and whether there is anything more to hope for. The program, as the title indicates was to find the the way to “decode” autism in order to work “toward a cure”. Let me start out by saying that I understand the division within the autistic community between those who want people to quit looking for a cure and instead work to encourage neurodiversity and those longing to finding a cure. I respect the rights of all individuals to choose their own paths. My path right now is to lessen the adverse neurological effect of autism on my son’s daily life.
That being said, I watched this program to see what opinions and information I could garner from it. There were interviews across the United States from Children’s Hospital, the research facility for Harvard to UC Davis MIND Institute in Sacramento, very close to home for me. The program gave opinions concerning what causes autism and the treatments people are using to try for a “cure”.
The program says the brains of autistic children are, on average, 5 percent more enlarged than those of neurotypicals (NTs). The white matter is also enlarged by about 8 percent which, they say, means that there is too much wiring in the autistic brain. There is also a unique brain wave pattern that show fractions of a second delay in brain signaling in the autistic brain which together with the increased wiring shows that there is a brain connectivity issue going on. That abnormal brain connection is located in the frontal and temporal lobes of the brain where language, social cognition and perception are contained.
What has been discovered to date is that there are many different causes of autism including that the immune systems of some autistic people make antibodies to one of the types of neurons in the the brain and some mothers produced antibodies to fetal brain tissue! There are also believed to be several hundreds of genetic causes of autism.
When it got down to discussing the best treatments, the program said that there will probably be different types of recommendations for treatments depending upon the origination or cause of the autism. The program made it clear that the only form of treatment that has shown empirical evidence of improvement is ABA.
The program says you cannot begin to fix a problem when you don’t know what went wrong in the first place. That was the language that got to me. I don’t know the origin of my son’s autism. I don’t know what his genetic situation is. I remember that our pediatrician and the hospital were trying to get me to have my son’s blood drawn for the genetic testing but I did not want to do it because I did not think it would make a difference to his treatment and no one I asked about it could give me any concrete reason why it might help him.
This program gave one “lumped up” example of a family that said they “cured” their son by using the multiple alternative treatments of B12 shots, gluten and casein free diet and hyperbaric oxygen treatment. It spent about 60 seconds on the family. We did not get to hear their son talk or respond to questions. The entirety of the family’s existence was explained and then erased by stating that none of the treatments they used have been shown to work. So what is the message there?
These parents said their son was basically nonverbal, underwent all these alternatives and said their son was now indistinguishable from an NT child. Immediately thereafter, the program completely dismissed them without anything further than a disclaimer that every treatment the family used did not work. What? What does that mean for the rest of us? That this family is a bunch of looneys? That their son still has autism and they are wrong? That their son never had autism?
The program talked about therapies for autism without endorsing any. It talks about early intervention as the only hope and then gives the statistic that it helps only in 50 percent of cases. It spoke of hope to start therapy as early as 6 months old for some children based on blood phenotyping and then shot down such intervention as implausible at that age. I was left quite confused by it all.
It further talked about “Autism’s False Prophets” and the fact that desperate parents will spend lots of money for something which is not a cure. I guess that’s where I fit because I want to try the HBOT to help my son. Even though I hear about the charlatans, I want to make sure I do what is right for my son. I will talk to his pediatrician and do further research on that subject but I am less hopeful that the benefits will outweigh the risks involved.
The one light I found in the information provided was a discussion of a therapy called Transcranial Magnetic Stimulation or TMS. Transcranial magnetic stimulation (TMS) is a noninvasive method to cause depolarization or hyperpolarization in the neurons of the brain. TMS uses electromagnetic induction to induce weak electric currents using a rapidly changing magnetic field; this can cause activity in specific or general parts of the brain with minimal discomfort.
In looking online for more information on TMS, I found that John Elder Robison, an adult with Aspergers who was diagnosed at age 40, is involved in the study and blogged about it here. He also discussed it on You Tube. After about 2 minutes of introductory background, he talks about the TMS procedure as opening a whole new world:
So, now I have something else to investigate. TMS sounds much less dangerous and has a very familiar and articulate face to attach to it. Looks like I will be switching horses. I don’t quite think I’m mid-stream however.
I welcome your input, as always as I seek ways to help my son. Please let me know what you think.