Clinic Notes: Autism as a Systemic Disease

As I mentioned in a previous blog, a pediatrician, who's two year old had just been diagnosed with autism, contacted me. She had taken her child to the gastroenterology department at the hospital where she worked and the doctors there told her that autism was a gastric disorder. She went to the immunology department and they told her that autism was an immune deficiency disorder. In the neurology department she was told that autism was a neurological disorder. What is autism she asked me exasperated? I told her that autism is a neurological disorder although some children with autism have gastric and/or immune problems. Mark Hyman, MD now says that our current thinking about autism is all-wrong and autism is a systemic disorder that affects the brain. According to his theory a "toxic environment" triggers genes that cause frequent infections, gut problems, and finally neurological problems that cause the faulty wiring that causes the behavior abnormalities seen in autism. While this is an interesting theory I don't see it in my practice. Usually, I see between 35-40 kids on the autism spectrum each week. Some of these kids are frequently sick and have obvious immune problems. But others are never sick. Some have digestive disorders. Others do not. Some have a positive history of autism in the family while others do not. All have neurological disorders that underlie the symptomatic disorders of autism, which also vary. So what kind of systemic disease causes such variable problems? Are their different types of autism? Different etiologies? I don't see it.

Clinic Notes: Church and Autism

Many parents who bring their children with autism to my clinic complain that their child does not do well in church. Children with autism who have sensory issues may not do well in church because of the noise and the crowd. But at the same time these children, and adults with autism and other disabilities want desperately to take part in church activities. But all too often they feel excluded. I live and practice in the Bible-Belt and attending church is an important issue for families. Having children with autism in church is also an important issue for the church, especially if the child with autism exhibits behavior such as talking non-stop, hand flapping, not staying seated, or engaging in other behaviors, which are disruptive. Many parents get the message, either implicitly or explicitly, that their child with autism is not welcomed in church. The family then becomes even more isolated from society. Not being welcomed at church runs counter to Judeo-Christian and Muslim religions where acceptance of everyone is a central tenet. As the number of children with autism increase, some in the religious community are reaching out with written guidelines to include people with disabilities in all church activities. And this is a good first step. I do know of churches, usually small churches, that have "learned" to not be bothered by the child with autism. But unfortunately this is rare. Hopefully, churches will become more "educated" and accepting of children with autism and other disabilities.

Clinic Notes: Mercury and Autism

Many parents who bring their children with autism to my clinic tell me that their child was developing normally and they thought everything was fine, and then, sometime between the age of 2 and 3 their child began to loose words and regress. The only thing the parents can recall that was different was that the regression happened after the vaccinations that are normally given at that time the regression occurred. Mercury is a heavy metal that is toxic and many people think, that this must be the cause of autism. But if this is true why don't all children get autism? Ok maybe some children are able to metabolize the mercury and other children cannot. But then why did the rates of autism not fall when the mercury was taken out of the vaccine? Furthermore, why are the autism rates the same in vaccinated and non-vaccinated children in countries that do not require vaccinations?
Now at this point I am not ready to clear mercury as a potential cause of autism. A recent study involving more than 6000 women found blood mercury levels rising in American women. This is not surprising. Mercury is increasing in our environment. The number of coal plants that produce electricity are increasing, and a recent survey found that a quarter of the fish found in US streams and lakes have unsafe levels of mercury. (This at a time when health experts are touting fish as a brain food and telling us to increase our consumption of fish.) I also hear that mercury pollution from Chinese coal plants ends up in California soil and is re-released into the air during the fire season. Mercury levels in women accumulate as they age and could affect the fetus. Older mothers are more likely to have a child with autism.) At this point, more research on mercury in the environment and its relation to autism needs to be done.

Clinic Notes: What's Money Got to Do With It??

As socioeconomic status (SES) increases the likelihood of being diagnosed with a serious psychiatric disorder decreases. I can remember when anxiety disorders were reserved for the upper SES and psychosis for the lower SES. And I can recall when autism was rare and studies said it was more common in families with a high SES. As the number of children diagnosed with autism increased more and more children in lower SES were diagnosed with autism. Now a new study In Wisconsin finds that as a families SES increases so does the prevalence of autism. The researchers point out that the differences in their study may be accounted for by differences between the two groups in terms of access to services. I think that without question access to services is the key here as it is everywhere else. Almost everyday I hear about a child in a low SES area that likely has autism, but has not been diagnosed and is not receiving services. Or if they are school age and receiving services it is the same as the other special ed kids--no ABA, no speech, no OT, no pediatric neurologist. Higher SES families either with insurance or private pay are able to get their children services. I have former students who are providing ABA to families in Nashville who are in the country music industry and high SES. Some of these former students are making six figures working with one child and providing intensive ABA. Now I wonder who is going to loose a their autism diagnosis. Money has a lot to do with it.

Clinic Notes: New Autism Rates

As I have mentioned in previous blogs, when I first started practicing nearly 40 years ago I never saw a case of autism. Now children with autism make up nearly 80% of my practice. And according to a new survey by the US Department of Health and Human Services the rates are going up again. Now the autism rates are at 1%. In other words, the odds of a child being diagnosed with autism now are 1 in 63. The new rates still find more boys with autism than girls. But the new stats show something even more interesting. A large number of children diagnosed with autism, over 30%, will loose their diagnosis. Interesting because for years we have been telling parents that autism was a lifelong disorder.

Clinic Notes: Should You Tell a Child That He or She has Autism or Asperger'

This is a question that parents frequently ask in my clinic. And most everyone agrees that it is a good idea to tell the child. Many children on the spectrum already know they are different and if they know their diagnosis then they understand why they are different and they are usually relieved and will accept therapy. And the consensus is that they should be told early.
When I tell parents this they tell me that they are afraid that when a child learns of their diagnosis it will lower, maybe even destroy their self-esteem. Actually though, the child's self-esteem seems to improve because they have their diagnosis to blame for their problems which they see separately from themselves.
At what age a child is told varies and how much you tell a child also varies. Most experts recommend the earlier the better and all the information about their diagnosis should not be given at one time. There are books available to help parents plan their approach. Just Google this blog's title.

Clinic Notes: IPods and Asperger's

I love my IPod. Only the music that I want downloaded at a cheap price. I listen to my IPod when I run, want to relax, work outside, on planes, anywhere that boredom might sit in. I've even thought about doing ABA podcast, but haven't got around to it yet. And I tell mothers who bring their children to my clinic to listen to their IPod when their kids are tantruming. I wasn't surprised to read that IPods are being used to teach social skills to children with Asperger's. Kids with Asperger's have problems deciding what is appropriate and inappropriate social behavior. At a Minneapolis Center for children with Asperger's social stories depicting how to behave in different situations are placed on short videos and slide shows. The kids with Asperger's can watch the relevant videos or slide show before they are in the actual situation and then adapt their behavior. I plan to try this in my clinic with some of my Asperger's kids.

Clinic Notes: When the Baby Boomers Develop Alzheimer's and Today's Kids with Autism Grow Up Who Will Care for Them?

My mother has Alzheimer's and is in an Alzheimer's unit at a local nursing home. She doesn't know us anymore, but she is receiving the best care possible. And she should. It is costing $5000 per month to keep her there and she doesn't get her hair fixed for free anymore. Now that's extra.
In my clinic the parents of the children with autism that I see are worried about what will happen to their children when they grow up. In most states there is a long waiting list for sheltered workshops and group homes and many adults with autism are vegetating in their parents' homes.
My mother's Alzheimer's and the autism epidemic got me to thinking about the future. Could moderate to high functioning children with autism be taught to care for Alzheimer's patients, at least, Alzheimer's patients who were mild to moderate? Children with autism like schedules and with a visual schedule should be able to attend to many of the Alzheimer's patients' needs. Of course, some nursing care would still have to be provided. And children with autism seem to have an affinity for other people who have neurological disorders. It could be done and would save a lot of money. I think the Alzheimer's patients and the adults with autism would enjoy each other. I'm not sure to go about implementing this though. And surely someone would object.

Clinic Notes: Stem Cells and Autism

Several years ago I read an article about a small stem cell company (StemCelInc.) who was trying to develop a cure for Batten Disease, a neurodegenerative disease of childhood. Children with Batten disease progressively loose function at an early age and eventually die. It is a horrible disease. I read all I could find about the company and its efforts and was so impressed that I bought stock, hoping that my small investment would help fund their research efforts. Since then I have bought other stem cells companies and closely followed their research efforts. Several companies, one of which is StemCells Inc., have received approval by the FDA to proceed with Phase 1 studies. In Phase 1 studies the safety of the drug, or procedure, is evaluated. Phase 1 is followed by other Phases to assess the success of the drug, or procedure, and potential side effects. Several companies, including StemCells Inc have now completed Phase 1 trials and the FDA is reviewing the results before allowing clinical trials. With mixed emotion I read in a recent Schafer report that a child with Autism from Maine was receiving stem cell therapy for his autism. Since stem cell therapies have not been permitted beyond Phase 1 trials in the US this child went to Costa Rica for his "therapy." The report mentioned that the treatment was expensive, that's no surprise, and they are starting a support group for parents who are interested. Of course, as a clinician I am very much against this for safety reasons and I feel like the expensive treatment is primarily motivated by greed. But then, if I were a parent of a child with autism I wonder how I would feel.

Clinic Notes: Autism and Gluten

Several years ago a pediatrician contacted me regarding her two-year old child who had just been diagnosed with autism. She worked in a large university hospital and took her child to the Neurology Department for an evaluation and they told her that autism was a neurological disorder. The followed up with an appointment with the Immunology Department and they told her that autism was an immune disorder. Similarly, in the Gastroenterology Department she was told that autism was a gastric disorder. In desperation she contacted me and asked what kind of disorder was autism. I told her in the end autism is a neurological disorder although gastric and immune factors may be involved in the etiology of autism. Previous studies have found a link between autoimmune disorders such as type 1 diabetes, rheumatoid arthritis and celiac disease. Celiac disease is a gastric disorder, which is treated by a gluten free diet. Gluten is found in wheat products and is in a variety of foods. Many parents have reported improvement in behavior in their children with autism on a gluten free diet. Unfortunately, this claim has not been confirmed in a double-blind study. In a double blind study the person giving the substance, in this case gluten or the absence of gluten, and the person receiving the substance do not know which they are giving or receiving. This is the standard for controlling placebo effects. I would like to see this study done, but I would like to see children in the study restricted to children with autism who also have gastric problems. This still wouldn't be a perfectly controlled study because the children not receiving gluten may simply feel better and therefore act better.

Clinic Notes: Recovering From Autism with ABA

We have been telling parents for years that ABA is the best treatment for autism. But then we quickly add that there is no cure for autism and it is a life long condition. Well, maybe we were wrong. We have had data for some time suggesting that it may be possible to prevent autism in high-risk toddlers by using intensive ABA (See www.aba4autism.com). Now a recent study finds that one in ten children given intense ABA at an early age recover from autism. (See WebMD Health News for details). The results of this study do not surprise me. Many of the kids who started ABA early in my clinic seem to be "normal" by age six or seven. I think the problem now is finding affordable and competent ABA for all of the kids with autism who are out there.

Clinic Notes: The Window to the Mind of Children with Autism

According to poets the eyes are the windows to the soul. I don't know if that is the case, but I do know that for many nonverbal children with autism speech augmentative devices are the windows to the mind. I am still amazed at the cognitive ability that is locked away in many nonverbal children with autism. This cognitive ability becomes unbridled when they learn to push the buttons on a speech augmentative device and generate electronic words. The autism literature says that anywhere from 75 to 90% of children with autism are mentally retarded, but I don't believe it. I am convinced that many children with autism who tested as mentally retarded would loose their mentally retarded diagnosis if they were proficient with a speech augmentative device. But with a 5 to 7 thousand-dollar price tag that won't happen anytime soon.

Clinic Notes: Asperger's and Social Networking

I was surprised to learn that some of the Asperger's kids who come to my clinic have Facebook pages. Their parents have set them up for them and closely monitor their activity. The Asperger's kids post pictures they have taken and post comments. Often, their posts are edited by their parent for content, grammar and punctuation. I doubt that anyone reading their post would guess that they have Asperger's. Writing and socialization is hard for kids with Asperger's and I think that social networking is a great idea. With the parents permission I plan on getting all of the Asperger's kids who come to my clinic a Facebook page.

Clinic Notes: Asperger's and Bullies

All of the children with an Asperger's diagnosis that I see in my clinic are mainstreamed. And that's good until Middle School when testosterone kicks in at puberty and bullying starts. It's like kids with Asperger's have a target on their back that says bully me. Of course other kids besides Asperger's kids are bullied, but for kids with Asperger's it is especially bad because they don't understand social behavior much less anti social behavior. I was especially glad to see that the American Academy of Pediatrics is publishing a policy statement on bullying and recommending a prevention model developed in Norway by Dan Olweus. The Olweus program focuses on the bystanders rather than the bully or the victim. The bystanders are taught that the bully has an anger management problem and they can protect the victim. Hopefully schools will adopt this model and provide training to stop bullying of children with Asperger's as well as the other ¼ surveyed who say they have at times been bullied.

Clinic Notes: Autism in Adults

In a recent article in "Time Magazine" the brother of a man with severe autism describes the life of his autistic brother and the ordeal his parent and now him are dealing with. Noah, who cannot speak or care for himself, bangs his head and pinches himself, and grabs people, spent 15 years in a state facility. His "therapy" has mainly been drugs, which unsuccessfully managed his symptoms. The article was taken from Karl Taro Greenfield's book, Boy Alone: A Brother's Memoir.
Greenfield notes that his parents were exhausted after years of caring for Noah at home and had no choice but to place him in an institution for children with developmental disabilities. They visited weekly and the family served as Noah's support group until he was moved to an assisted living facility. Greenfield notes, as I did in a previous blog, that we are not prepared for the explosion of adults with autism that will be here in a few years. All of the money now is being spent on services and research for children who are growing up.

Clinic Notes: Terrorists Recruiting Asperger's Suicide Bombers?

Apparently, terrorists using the internet helped a British citizen with Asperger's plant a bomb in a restaurant. The bomb went off prematurely injuring the man with Asperger's and causing a stampede in the restaurant. Sentenced in the Old Bailey Court to 18 years in prison the suspect is now undergoing test in a mental hospital. Many of the children with Asperger's that I treat in my clinic have problems with social concepts so I'm not surprised that the terrorists were successful. I suppose this is an isolated incident?

Clinic Notes: Where Will All of the Children with Autism Go

Everyone is concerned now with the rising number of children with autism. Autism diagnoses in California have increased twelve fold in two decades and rates are rising elsewhere. Providing services for these children with autism has placed a heavy burden on education and healthcare with many children unable to get the services they desperately. I practice in a rural area and at The Children's Treatment Center (http://www.childrenstreatmentcenter4autism.com) 70 to 80% of the children that we see have an autism diagnosis. Everyone who provides services for children with autism is overwhelmed. Research is increasing and that is good, but autism likely has more than one cause and there are no good animal models of autism. Since autism involves impaired communication I doubt that we will ever have a good animal model so it's likely that a cure is a long way off. When the children with autism reach adulthood and the school system is no longer responsible for them where will they go? Some will be able to have careers and live independently, but many will require continuing services. I used to be able to get special needs children in sheltered workshops and group homes in a few months, but now the wait is years and because of funding cuts some existing facilities are closing. Unfortunately, the majority are going to be with their parents. Furthermore, these children with autism will probably outlive their parents and who will take care of them then? It is time to start planning.

Clinic Notes: Recovering from Autism

Now there is evidence, some of it anecdotal on You Tube that perhaps 10% of children can recover from autism. Most of these children have received years of Applied Behavior Analysis (ABA), which started at a very young age. As I wrote about in an earlier blog previous studies have shown that it may be possible to prevent autism in high-risk toddlers with intensive ABA. While this is good news getting insurance coverage for ABA is still a problem. Blue Cross Blue Shield tells parents in the state where I live that ABA is experimental and not covered while Blue Cross Blue Shield in other states has treatment plan forms and suggest CPT codes to the provider for billing for ABA. Come on these are children's lives we are talking about.

Clinic Notes: Vitamin D Deficiency and Autism

The building next door to my clinic is full of tanning beds. Everyday I see a stream of people going in and out year round getting that golden tan under the lights. In the past I have shook my head and pitied them for risking skin cancer just for that back from vacation look. But now I'm not so sure. Some recent research suggest that avoiding the sun causes vitamin D deficiency and may contribute to the development of certain cancers such as prostrate cancer. And a recent study suggests that vitamin D deficiency may be involved in autism. The evidence comes from studies in Minnesota and Sweden involving Somalis immigrants. Their African home was on the equator and they got plenty of sunshine and vitamin D. There was no autism in their native land. In fact, there was no word in their language for autism. But when the Somalis moved the Minnesota and Sweden the incidence of autism in the Somalis soared. The Somalis in Sweden even call it the "Swedish Disease." I wonder now if parent should be dragging their kids to the tanning beds with them. With all the video games and childhood kids don't get outside as much as they used to. Maybe a few minutes in the tanning bed, equipped with video games of course, would cut the rate of autism.

Clinic Notes: The Music of the Spheres and ABA

In normally functioning brains, neurons fire in rhythm. However, in brains which are impaired by various disorders like schizophrenia or autism, the neurons oscillation frequencies are not tuned correctly and fire out of rhythm like band instruments each playing a different song. This behavior of neurons in the brain reminds me of the ancient Pythagoraian concept of universal music or music of the spheres where the sun, the moon, and the planets move in harmony--not an audible harmony, but a geometrical mathematical harmony that prevents chaos. Likewise the neurons in the brain must fire in a normal rhythm in order to process sensory information, thoughts and feelings, and implement speech and movement. In autism, it is obvious that at least parts of the brain are not working right and seem to have different rhythms. Although I have not done any empirical research and know of no studies, in my clinic the pacing or the rhythm of how we do ABA makes a difference in how kids progress. The frequency of breaks, the intensity of the drills makes big difference in the effectiveness of ABA. It's like a dance that must be learned between therapist and child. Perhaps a dance out of autism.