Clinic Notes: Hyperbaric Chambers and Autism

"Treating" autism is big business. Anecdotal reports have reported that children with autism have shown remarkable gains following exposure to increased oxygen in hyperbaric chambers. Supposedly, the increased oxygen increases blood flow thereby decreases inflammation, which changes the brain chemistry that causes autism. Of course, this is all hypothetical and no double blind randomized studies have been done until now. Researchers at Center for Autism and Related Disorders found no significant effect following hyperbaric therapy. I'm not surprised at the results. What I wonder about is how all this got started? Hyperbaric chambers have a long history in medicine and while there are legitimate uses there are also many times that hyperbaric chambers are used with scant data supporting their use. Furthermore, many of the studies are funded by the manufacturers of the hyperbaric chambers. (See the New York Times review by Jane E. Brody http://www.nytimes.com/2009/03/10/health/10brody.html?_r=2&ref=science

Clinic Notes: Treating Autism in a Rural Area While Waiting for Healthcare Reform

Many children with autism have ADHD like behavior and do well on stimulant drugs. Most pediatricians and family practice physicians have no problem prescribing these medications. But I am a psychologist practicing in a rural area and often see children who have no health insurance or their health insurance won't pay for the treatment of autism. So I'm supposed to treat a child with autism who has no access to a physician, and no way to pay for medication. Well, people in a rural area learn to get by with what they have available and I guess that includes me. Caffeine contains methylxanthine, which is a mild stimulate similar to what is found in ADHD stimulate drugs. (Stimulate drugs often have a paradoxical effect on ADHD behavior--decreasing it rather than increasing it.) Coffee can sometimes be used as a replacement ADHD drug sometimes in children as well as "energy drinks" like Red Bull. The problem is dosage. A child would have to drink a lot of coffee to get the equivalent stimulant effect of a large dose of an ADHD drug. But when only a small dosage in needed caffeine can work.

Clinic Notes: So Long Asperger's. I Hardly Got to Know You.

In 1944 Viennese physician Hans Asperger described a sample of children with high functioning autism who had normal intelligence and language, but were socially awkward and obsessed on various topics. In 1994 the term Asperger's Syndrome was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV. With the autism epidemic more and more children with Asperger's are being diagnosed and treated effectively. Now I have learned that in the next edition of the Diagnostic and Statistical Manual of Mental Disorders (D.S.M.-V) the "experts" are proposing that the term Asperger's Syndrome be eliminated and simply called Autism Spectrum Disorder. Well what could go wrong there? Asperger's is just now being accepted by the public, and more importantly kids who are diagnosed with Asperger's and call themselves Aspies. Furthermore, there are over 200 thousand websites devoted to Asperger's (many maintained by Aspies) and countless books and articles. Are these going to become obsolete by the vote of a committee?

Clinic Notes: What Has More Research on Autism Told Us?

A decade or so back, when it became apparent that we were in the midst of an "autism epidemic" the call was repeatedly made for more research into the potential causes of autism and effective treatment options. Now so much autism research is being done I have trouble keeping up with it. Well, I think it is time to ask the question, "What have we learned?" from all of the research. Of course trying to answer this question will generate a lot of arguments--some very volatile, but I have no agenda and will try to answer these questions as I see them.
I think the evidence is compelling that in most cases of autism mercury is not involved. When mercury was taken out of vaccines rates did not drop and in countries where vaccinations are not mandatory the rates of autism are the same in vaccinated and non-vaccinated groups.
Secondly, I don't think in most cases of autism gastrointestinal disorders are a factor. Most of the children with autism who have come to my clinic over the years do not have gastrointestinal problems. A recent study at the Mayo Clinic confirmed this. Gastrointestinal disorders do not occur at a higher rate in children with autism.
Chelation therapy, gluten free diets, and hyperbaric chambers do not cure or even improve the lives of children with autism. All evidence to the contrary is anecdotal and has not been confirmed in double-blind studies. I realize this will not set easy with many people. But I am in the trenches, treating autism daily and I just don't see progress in children who have had these therapies and I think the research is as conclusive as research can be. Research should continue, but it is time to move on to areas of research that have more potential.

Clinic Notes: Mercury Levels in Children with Autism

Science is a slow process and sometimes it's not a discovery that is made in a study that is important, but a study or studies that can rule out something as a cause. No one knows what causes autism but several recent studies, combined with previous studies, in my judgment have gone a long way in ruling out two causes of autism. Previously, I wrote a blog on a large Mayo Clinic study that found no differences in the frequency of gastrointestinal disorders in children with autism and normal controls. And now from the Mind Institute at UC Davis we have a large sample study that finds that there was no differences between mercury levels in the blood levels of children with autism and a control group. This study, combined with previous studies that found no relationship, tells me that it is time to move on and investigate other variables that have more potential.

Clinic Notes: There's an App for That

Applied Behavior Analysis (ABA) is the most effective treatment for autism. Unfortunately, well-trained ABA therapists are expensive and hard to find. On my website (www.aba4autism.com) I offer an online ABA course for caregivers as well as ABA eBooks, ABA Case Histories, and individual ABA programs. Many parents and other caregivers who have not been able to find and/or pay for an ABA therapist have told me how helpful my website has been for their child with autism. I was watching an iPhone commercial the other day that was talking about all of the apps that could downloaded to the iPhone--apps for everything imaginable and I got to thinking. Why not iPhone apps for ABA? I'm working on it.

Clinic Notes: Autism in Adults

As I have mentioned in previous blogs the incidence of autism is rising. This is well documented by stats put out by the CDC and I see many more children in my clinic now with an autism diagnosis then I did in the past. In the last decade or so many researchers label the rise as an explosion. Well autism is a lifelong disorder and one question that has not been answered is where are the adults with autism now? And how are they functioning? Are we going to have to have massive programs to aid adults with autism when the children we are seeing now grow up? A recent study in England attempts to answer some of these questions. England's National Health Service conducted surveys on the prevalence of psychiatric disorders in adults. In regard to autism, the finding of interest was how many adults with autism there were. Most were unmarried males and the frequency was 1 in 100 adults, which was in line with the stats reported for children. Furthermore, the study did not look at adults with autism living in institutions, which would have raised the incidence of adults with autism even higher. This was a small study, but if it is replicated with a larger sample it is hard to argue that an autism epidemic is taking place.

Clinic Notes: Body Language and Autism

Several years ago I published an article titled, "What Horses Tell Us About Autism." (Available at www.aba4autism.com). In my clinic I had noticed that when given directions children with autism seem to respond much like horses to body language and tone of voice. If the caregiver is hesitant or indicates nonverbally that they do not expect the child to follow directions then the child does not. And vice versa. A recent study in the UK at Durham University investigated the way adults with autism see and/or process body language and then infer inner feeling and emotions. When shown video clips without sound or facial movements the adults had difficulty interpreting emotion even when it was "obvious" such as shaking a fist. As the authors point out this could greatly effect daily social interactions.

Clinic Notes: Autism and Gastrointestinal (GI) Disease

Some parents, autism researchers and clinicians think that autism is caused by GI disease, hence the gluten and casein free diets, and various vitamins and supplements that are given to children with autism. So is there a link between autism and GI disease? A recent large scale Mayo Clinic study has some interesting findings. Most of the children diagnosed with autism and the control subjects had received their care at the Mayo Clinic and detailed information was available for the study. The most interesting finding was that the children with autism did not differ from the control group in the frequency of GI disease. Two symptoms--feeding difficulties and constipation were found more often in the autism group. The researchers note that these two symptoms are probably related to autistic behavior--restrictive diets--lack of fiber, rather than a GI disease. Neither group had celiac disease, which is intolerance to gluten. The authors of the study conclude that GI disease should be treated when it is diagnosed independently from autism. But treating autism without verification of GI disease is not warranted.

Clinic Notes: Early Detection of Autism Redux

Autism is usually diagnosed between the second and third year of life when language fails to develop. (This is also the time when children receive vaccinations for common childhood diseases hence the association between the mercury in the vaccines being the cause of autism, which is still being hotly debated.) As I mentioned in a previous blog some research finds that ABA started as early as 18 months can actually prevent autism. There are no reliable early biological or behavior markers of autism and everyone agrees that if we could diagnosis at an earlier age and start ABA and other treatments then autism could be more effectively treated. According to a recent study, signs of autism appear in the first few weeks of life. Researchers at Flinders University found differences in attention, cognitive, temperament, and sensory processing between children who later developed autism and children who developed normally. If this study is replicated then therapist may be starting ABA and other therapies at a very early age.

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.