Further Thoughts on the MSG-free Diet as a "Cure" for Autism

I knew that I was forgetting something when I published my post criticizing the news article touting a MSG-free diet as a "cure" for autism. In that post, I wrote about the issues  in diagnosing autism. The diagnosis is made based on observable -- and therefore subjective -- behavioral criteria, rather than on any kind of physical (genetic or neurological) criteria. 

Not only are the diagnostic criteria fuzzy, but so also is the definition of autism itself. Really, they are the same thing. The DSM is the tool used by the American Psychiatric Association for both defining and diagnosing autism. I discussed the DSM at some length in my post "How Autistic is Singularity".

What I forgot to mention is that I believe that, once science has a better handle on what autism actually is, the autism of the girl who was "cured" would no longer meet these future diagnostic criteria for autism, or that she was misdiagnosed with autism. And since the diagnosis of autism is such an art, it is misdiagnosed with some regularity. I don't necessarily disagree that the girl in the news article was cured of something, but I do not believe that what she was cured of was autism.

Fact or Fiction: MSG-free Diet as Cure for Autism?

The San Francisco Chronicle recently reported on the claims of a Bay-Area biochemist and parent of an autistic child that a MSG-free diet cured her daughter's autism. There is so much to say about this that I hardly know where to begin. 

There is so much information about autism out there, and I find that most of it is written in such a way as to inflame people's fear of autism or to tout snake oil remedies which give people false hope of a cure for autism. This article seems to be a case of the latter. 

The article was very non-specific about the source of the MSG.  It isn't clear whether the claim is about MSG that is used by the food industry to make processed food more flavorful, or about the MSG that is naturally present in many foods. The article hints at the former, as it notes that "MSG is sometimes labeled as flavor or flavoring, soy protein, barley malt, pectin, corn starch or yeast extract." However, according to Wikipedia, MSG is one of the "most abundant naturally-occurring non-essential amino acids." The chemical compound was originally isolated kombu seaweed. 

Does this mean that one wishing to follow this diet should avoid food products labeled with the ingredients enumerated in the article, or does it mean also avoiding foods in which the substance naturally occurs? According to the FDA, MSG occurs naturally in tomatoes and cheeses. Would pizza would be off the menu?

On a different front, the article simply doesn't describe the way in which autism is diagnosed, possible sub-types of autism, and its physical manifestations. 

In my view, one of the main problems in the diagnosis and treatment of autism is that the diagnosis continues to be based on observable behavioral criteria -- does a person display atypical social behavior and language and perseverate over special interests? It is a very superficial way of making a diagnosis. There could be any number of underlying causes of the behaviors. Unfortunately, science does not yet have the tools to diagnose according to any more objective criteria. Autism research is being pursued in many different directions, and brain science is still at an early stage. I do not claim to be an expert on this. But it does seem clear that there are many sub-types of autism that have distinctly different flavors. These different forms of autism are all called autism, currently, although they probably have a wide variety of causes, because they have similar behavioral hallmarks. Many different genes have been identified as having a role in causing autism, but science does not yet know how they interact with each other and with environmental conditions. 

To get back to the MSG article, there is an implication in the article that autism is caused by a chemical dysfunction. This may well be -- in some subtypes of autism. However, autism may also be characterized by atypical brain circuitry. To illustrate this, take a look at this amazing image:

These are "high definition fiber tracking" images of the language system in the brain done by Dr. Walt Schneider of the University of Pittsburgh and shown on the 60 Minutes story "Apps for Autism". The brain on the right is that of a neurotypical person, and the brain on the left belongs to Temple Grandin. You can see that the Temple Grandin's language system has recruited many other areas of the brain. 

I love this image. I have shown it to Singularity's class at school to illustrate that autism can be caused by brain differences. Temple Grandin's brain is different. It has found different pathways to accomplish the same things as the neurotypical brain. Difference is value-neutral. It is neither better nor worse. 

But I digress. 

There is simply no way that switching to a MSG-free diet (again, whatever that is) would change Temple Grandin's brain circuitry. For her form of autism, at least, the MSG-free diet is not a cure. 

I don't know if a MSG-free diet would help to prevent the development of autistic brain circuitry, and neither does the biochemist-mom or the author of the article. 

The article's author did consult some autism experts who were skeptical, from a scientific point of view, as there is no scientifically-tested evidence to back the MSG-free diet. However, the article ended with the biochemist-mom's assertion that this diet has been effective in 74 of 75 cases in which she has tried it. This seems like an unsubstantiated claim, and the article's author does not ask to see the clinical evidence. 

If I sent this reporter an email claiming to have cured my son's autism by eliminating unfiltered water from his diet, could I get an article published?

The article doesn't even end by saying that further research is needed. It just gives the biochemist-mom the last word. Is the newspaper not aware of reader behavior (of which I am often guilty) of only looking at the beginning and end of an article???

And so, here we have another article appearing in the mainstream media that may send desperate families on another wild goose chase for a cure for their children's autism, based on hearsay rather than scientific evidence. To say the least, I would like to see a higher standard for science and health reporting.

Dmitri's Insight About Autism

Dmitri has continued to join Singularity for his ABA sessions throughout the spring, and as he has gotten to know us and the therapist he has relaxed quite a bit. He and Singularity have been sharing their special interests with each other, and they have both shown a lot of flexibility in respecting each other's interests. The last couple of times we have seen him, he has brought printouts of Super Mario characters. And he has also lent his favorite DVD. It has been a pleasure to see.

The last time we saw Dmitri, we watched an episode of his favorite show, in which one of the characters is upset because there was a rock blocking his path. Not just any path, but his favorite path.  The character, whom Dmitri identifies as the "foil", gets stuck. He can't imagine that there is any solution to the problem. The character's friend suggests going around the rock, but that isn't a satisfactory solution. Another friend suggests pushing the rock out of the way, but the character doesn't think it will work., so the friend recruits others to help push the rock out of the way. The operation is successful, of course.

And after the episode was over, Dmitri looked me and asked me if I thought that the character reminded me of someone with "some form of autism"! Of course, I had been thinking this all along. But it was impressive that Dmitri could make the text-to-self connection and see himself in the character. 

Aimily Dickinson Strikes Again

I am a bulb,
a creative abundance,
viable.

I feel free to widen into the spectacular view.

The protecting tree,
my community.

We occupy this place
until the bulldozer evicts us,
giving us a ride
nowhere we want to go.

*****

I am such a feast or famine kind of blogger. It all kind of depends on what else is going on. I am happy to report that Singularity completed his science fair project evaluating the relative hardness of the real-life equivalents to materials that can be mined in Minecraft. (Oh Minecraft, how do I love thee? Let me count the ways....) More on that later, perhaps. 

In the meantime, I have been mulling over many blog ideas, but publishing none. Oh well. 

One thing that has been pretty constant is my writing group, the Powder Works Writing Group, which often focuses on poetry. We have been meeting most weeks, and we have been quite productive. Above is my latest effort. 

We were all trying to draw inspiration from an article in the May 2014 issue of Street Sheet, concerning the removal of homeless people from encampments on the Albany Bulb. Initially, we were trying to use the article to make blackout poems, but it turned out that none of us did. 

I ended up using the article as a source of words, which I tried very hard to use in a way having nothing to do with the original article. Klailklop said that it still made him think of the events described in the article. Maybe I shouldn't have told him or you what the article was about.

For another poem based on the article, please see Zoe Francesca's blog, Pink House Poetry.

Look, Mom, No Training Wheels! Or, Singularity is in an Expansive Phase

Singularity suddenly seems to be in a phase of being open to new things. If you read my previous post, you know that he is now playing chess with Klailklop. He is also spending more and more time without his headphones. 

And now he is finally riding his bicycle without training wheels! 

This will only seem amazing to you if you know the back story. When Singularity was in kindergarten and first grade, he participated in his school's Adapted Physical Education program, in which the students worked on learning to ride a bike every other week. In the alternating weeks, they roller skated. (It has probably been a while since I have sung the praises of the services we have received from our school district and the caring and effective professionals who provide them. We continue to be incredibly fortunate!) 

Six-year-old Singularity riding his bicycle

Anyway, during his first grade year, Singularity mastered riding a two-wheeler. He was a fantastic rider. The summer after first grade, we went on a long road trip, during which we spent a day on Mackinac Island on Michigan's upper peninsula. This is a car-free island, so we rented bicycles, and in the course of the day we rode to a couple of destinations, as well as riding the 8-mile bicycle road around the edge of the island. 

Not only was Singularity a capable rider, but he also took great joy in riding. It was as if all of the cylinders in his brain and body were firing perfectly. He didn't appear to have any sensory issues while he was riding. He was very aware of what was going on around him. He knew when to slow down and when it was all right to speed up. He could respond in real-time to the conditions around him. 

Until he couldn't. 

There was a specific incident that caused him to become very frightened of bicycling. One day during the summer after his first grade year, he and I were riding on the bike path near our house, and we came to the intersection with the major road through our town. The light was green as we approached, but the walk sign was not illuminated. I entered the crosswalk, knowing that the light had just turned green and that we had plenty of time. Singularity, however, refused to enter the intersection without the walk sign. And the light turned red while I was still in the crosswalk. I had to backtrack to where Singularity was waiting. 

I didn't think anything of it at the time, but Singularity was thinking about it, and a couple of weeks later he simply refused to ride his bike again. It was heartbreaking to Klailklop, who is a bicyclist and transportation activist. Bicycling had been a rare activity that Klailklop and Singularity had enjoyed together. Such a loss. 

With me, Singularity talked a lot about how what I had done was dangerous and how bicycling in general was dangerous. I signed a contract with him and agreed not to do anything unsafe, but it made no difference. 

At one point, Singularity said that he would try riding again if he could use training wheels. Klailklop resisted that idea, as it represented such a setback. However, after about a year and a half of no bicycling, Singularity refused to ride without the training wheels. 

Autism Parent Maxim: If what you are doing isn't working, it is time to try something else. 

We finally put the training wheels back on. I think that this must have been around the time Singularity started taking Prozac and speaking to Klailklop again. He still didn't really want to ride the bike. We tried working on it in ABA, but we still didn't get very far. 

Until we did. 

Singularity had been riding his bike occasionally with the training wheels on for most of this school year. He would not ride on the street and insisted on riding on the sidewalk when no bike path was available. At first, he went out of his way to rely on the training wheels. We raised the training wheels. He relied on them less and less, and eventually it became a bit comical to see this kid riding a bicycle with training wheels that never touched the ground. We have gone on some rides of several miles with friends. But he was still not ready to take off the training wheels.  

Until he was. 

Last week, all fourth graders at his school had a special bicycling program, with an hour of drills followed by a ride in the community, on the roads. This sounded like a lot for Singularity to manage, so I got in touch with the school to fill them in on the situation -- that Singularity was still using his training wheels and that he wouldn't ride on the street. His wonderful team at school assured us that they would give him incentives to participate as much as possible in the program.

The night before the program, I was able to get him to tell me that the thing he felt unsure about, the thing that had made him want to keep the training wheels, was that he didn't remember how to get started. They clearly must have focused on that with him during the instruction part of the program, because he let them take the training wheels off! He practiced riding in the school yard with some of his classmates, while the others went on their community outing. We rode our bikes home from school that afternoon, and we have ridden every day since then. 

Yay, Singularity!!!

Playing Together

This has been an amazing week. This picture pretty much says it all: 

That's Klailklop and Singularity playing chess. Together. Maintaining joint attention for a long-ish period of time.

Last year, all third graders at Singularity's school received instruction in chess. I was never able to get Singularity to play with me, so I never knew if he had learned or not. Now we know! 

And the thing that hooked him into it was the Super Mario chess set that we got last weekend. The power of the special interest strikes again. 

Depression and Medication

I know that people are all over them map in their opinions about medication, but here is mine: I am in favor of medication. 

Of Singularity. 

Of myself.

As for Singularity, in February 2013, after he had not spoken to his father in approximately 5 months and after ABA therapy had failed to make meaningful inroads into the stalemate, it became clear that what we were trying was not working. It wasn't only that Singularity's relationship with his father was dysfunctional. His relationship to the world was too. 

The first half of third grade was a very difficult for Singularity. We were only able to get him to school kicking and screaming, at length, on the first day. His fight or flight instinct was activated in a major way. The following days were not much better. There was a lot of communication between home and the special education teacher. There were behavior contracts. And through it all Singularity insisted that he was not actually a member of the class, and he spent a lot of the time in his "quiet place," which was a dark corner with pillows. 

He was just really anxious, and really depressed. 

His developmental pediatrician suggested that we try Prozac, so we did. (He takes an extremely low dose, 6 mg per day.) And it made all of the difference. After about three weeks on Prozac, Singularity began speaking to Klailklop again. He began to emerge as a member of his class. 

I believe that we need to give our children the best possible baseline for their development in life. Prozac is helping Singularity. It has allowed him to exist on the higher end of his ability. It has raised the bar for him. We will continue using it until it doesn't help any more. Then we will try something new. End of story. 

As for myself, honestly, I don't know if the Celexa I take is doing anything or not. I began taking it around the same time that Singularity started his Prozac. There was no sudden transformation in me. But then again, February 2013 was about the lowest point for me, in terms of the degree of dysfunction between my husband and child and in terms of the burdens of being essentially a single mother who happened to be married and living with her husband. This was on top of the general stresses of parenting an autistic child, whose response to different life situations is often unpredictable. There were days when I actually took a beta blocker to diminish the visceral symptoms of the anxiety I had over getting Singularity to school in the morning. I needed a better baseline myself. And though I was feeling this acute anxiety from time to time, I am sure that it was nothing compared to the anxiety that Singularity was experiencing. 

In any case, after Singularity and I both began taking antidepressants, it got better. Singularity returned to being his own delightful self. It became easier for me to take care of him and to deal with the whole situation. Our family dynamic improved. 

I have started joking with my friends that when "they" hand parents an autism spectrum diagnosis for their child, they should also hand them a prescription for their own antidepressants!