Clinic Notes: Does Acetaminophen Cause Autism?

Many parents of children with autism blame the vaccinations that their children were given between 2 and 3, more specifically the Thirmosal preservative (Mercury) used in the vaccine, as the cause of their children's autism. The scientific data do not support this but the argument goes on. Now a new culprit related to the vaccine has been suggested. Acetaminophen, which physicians suggests be given to reduce the fever that can occur following the injection instead of aspirin, which can cause Reye's Syndrome. Well, the change from aspirin to acetaminophen does correlate with the increase in autism, but children are given acetaminophen to reduce fever whenever they are sick and they, along with most children who receive acetaminophen following the vaccines do not get autism. Statistically, anything that has increased along with the increase in autism will correlate. The increase in the use of cell phones would correlate with the increase in autism. But cell phones don't cause autism. Or do they?

Clinic Notes: Help Wanted. Need People with Autism

The children with autism that I see in my clinic are very young, usually between 2 and 6. Most of the older children that I see in my clinic have been coming for years. They all progress at different rates and I wonder about their future. Where will they work, where will they live, will they marry and have children? Well, a report this week gives me a clue into the work future for some of them. Several companies such as Wrigley have hired people with autism as computer systems developers because they are able to focus for long periods of time on detailed tasks that others would get bored. A company in Denmark and another in Chicago hire and train people who have high functioning autism as consultants on data entry and code checking and send them out to work in various industries. So it looks like there will be jobs for the children that I see in my clinic if I can get them to the point that they can manage their sensory problems, follow directions, and communicate.

Clinic Notes: Social Skills and Autism

Autism is primarily a communication disorder. Children with autism may lack functional language or may have language that is functional, except in social situations. For children with autism who lack language then ABA and therapy with a Speech Language Pathologist is essential. But what about the high functioning children with autism or Asperger's.. How do they develop social skills? First of all, they need to be in a classroom where there are other children at their level or above, or they need to be mainstreamed. Of course, just putting them in a regular classroom without social skills training and attention to situations where the stimulation is too great could be a disaster. A child with autism may do find socially in a quiet classroom and have a meltdown in a noisy lunchroom. Second, social skills can be taught using social stories and practicing social skills in a controlled environment where the sensory stimulation can be controlled, as well as potential bullying. This is a lot to ask of a teacher so extra staff need to be trained to work with these higher functioning children. Go to: http://www.washingtonpost.com/wp-dyn/content/article/2009/12/02/AR2009120202884.html?hpid=moreheadlines for an interesting account of how one school is accomplishing this.

This week another study has confirmed what those of us who work with children with autism already know--he earlier the intervention the better. In fact in previous blogs I have mentioned that with ABA started early some children are able to loose their autism diagnosis. That is certainly good news. The bad news is that services are expensive and hard to find. Everyone has a waiting list.
If you child is diagnosed with autism early find out about your state's early intervention program. States are responsible for providing and paying for services until your child reaches age 3. Go to http://www.disabilityresources.org/DRMreg.html and search for services in your state. After age 3 the school system are responsible and this is where the real problems in getting services become apparent. Some school systems are very good about providing and/or paying for services while others are not. Know your rights. Get an advocate to accompany you to your IEP meeting if necessary.
Check your private health insurance policy. Some policies will pay while others will not. As other parents of children with autism what they are doing and also ask your pediatrician for referral information. Unfortunately. Finding services for your child may be a bigger battle than dealing with your child's autism.

Clinic Notes: What do Emotions Look Like to a Child with Autism?

Children with autism have problems identifying emotions in other people. It seems this has to do with facial expressions. But children with autism also have problems identifying and managing their own emotions. Anger, sadness, anxious, happiness, and other emotions are difficult to describe. Joseph and Silvana Karim have two children on the spectrum and after working with their children wrote a book using color to express emotion. For example, anger is hot and therefore red. This approach makes a lot of sense since children with autism seem to do better in the visual modality. Their book also has drills to help the child with autism identify emotions in the facial expression of others and describe their own emotions using their own words. I plan to see if this could be used in a discrete trial format in my ABA clinic.

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.

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.

Clinic Notes: Autism as an Insanity Defense

According to a recent Schafer Report, a number of violent criminal cases around the country have employed an insanity defense claiming autism affected the person's ability to distinguish right from wrong. Most insanity defenses rely on schizophrenia or some mental impairment. Individuals with autism or Asperger's Syndrome do have problems with socialization and are often awkward and don't understand social norms. They can be aggressive at times, but rarely violent. Fortunately, "expert doctors" called to testify for the defense or prosecution can be sure to disagree, and juries are usually unwilling to accept the insanity defense anyway. I doubt that anyone will successfully be able to prove that "autism made me do it." At least I hope not. I don't want autism to get a bad name because it is used too often as an insanity defense.

Clinic Notes: Robots, Autism, and ABA

The Today Show recently had a piece on robots, which were designed to "interact" with children with autism. Previous observations have found that children with autism interact with mechanical devices such as touch screen computers or computer generated speech devices better than they do with humans. Hopefully, these specially designed robots could become "playmates" for children and teach them how to make eye contact and develop social skills. In my clinic, and other clinics, we do much the same thing with ABA and at a much cheaper price. Anyone in private practice will tell you that overhead is a curse and no one in private practice would be able to buy or rent one of these robots. Another curse in private practice is dealing with insurance companies. I would worry that even if the price of the robots came down and were affordable, would the insurance companies reimburse the provider for the robots' services?

Clinic Notes: Using Cartoons To Detect Autism at An Early Age

Everyone agrees that the earlier that you start treatment for children with autism the better. In fact some studies indicate that early ABA can even prevent autism. Yale University researchers may have come up with a novel way to detect autism using stick figures playing pat-a- cake in various orientations. They found that whichever way they oriented the figures--upside down--right side up did not mater. The young children with autism paid no attention to them. However, when the figure started clapping and singing in time with the nursery rhyme the child with autism paid attention. Auditory-visual synchronicity was what caught the child's attention. Normal children paid more attention to the figure's movements and ignored the auditory-visual synchronicity.

Clinic Notes: A New Autism Drug

According to several reports online Curemark has received FDA clearance for a Phase III clinical drug called CM-AT for the treatment of autism. CM-AT would be given with meals to help a small subset of children with autism who do not digest protein. Problems in protein digestion can lead to other problems in digestion and a decrease in neurotransmitters.
I recall several years ago a physician who's two year old had just been diagnosed with autism. She took the child to the gastroenterology department of the hospital where she worked and they told her that autism was a gastric disorder, which they could treat. Not satisfied she went to the immunology department and they told her that autism was caused by an immune disorder, which they could treat. Still not satisfied she went to the neurology department where she was told that autism was a neurological disorder, which they could treat. Confused she emailed me and asked what autism was. I told her in the end autism was a neurological disorder, however a subset of children with autism have gastric and immune problems. Hopefully, this new drug will help those children with autism who have gastric problems and perhaps even help us understand autism in general.

Clinic Notes: ABA for ASD, ADD, ADHD, SD, ODD, OCD, TS, and Whatever Else is That is Left in the Alphabet

A syndrome is a collection of symptoms. So if we say a child has Attention Deficit Hyperactivity Disorder (ADHD) we know that this child has problems paying attention, is easily distracted, will not stay on task, will not sit still, will get out of his seat, not listen to the teacher, etc. Naming a syndrome such as Autism (ASD), Obsessive Compulsive Disorder (OCD), or Oppositional Defiant Disorder (ODD), is the short hand of clinicians as they communicate with each other, patients and their families, and the public. Clinicians also have shorthand for therapies. For example, Applied Behavior Analysis includes a long list of behavior therapies.
In a recent Schafer Report, an article titled, "The Rise of the Alphabet Kids," the author asks if the rise in the use of acronyms, such as ADHD, ASD, or ODD is helping or hindering treatment. In his view many British children have a list of diagnostic letters following their names because they have overlapping disorders. In my clinic I see this all the time. A child comes in with a diagnosis of Autism (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). Does the child have both? Or does the child have autism? Or does the child have ADHD? Usually, the child has autism. Many kids with autism have problems paying attention and many kids with autism are hyperactive. In my view, the added ADHD diagnosis is only describing a common feature of autism. The same is true of some of the other alphabet disorders. The added diagnosis is describing a feature of another diagnosis and is redundant. Of course, when you define behavior problems behaviorally (what is observable and measurable) then the problem disappears.

Clinic Notes: Boy Locked Away by Parents for Seven Years

In a recent Schafer report (March 6, 2009) there was a report of a young boy who had been locked in a dark barren room for seven years. He never played with other children, been to the doctor, gone to school, and was beaten by his father. Inquiring neighbors were told by the parents, that the boy was autistic and receiving treatment at home. The parents are going to jail and the young boy will receive therapy and probably be placed in an orphanage or possibly a foster home. Unfortunately, incidents like this happen periodically and I documented several in a case history titled "Wild Child" (Available at http://www.aba4autism.com). Not only are cases like this barbaric, they tend to occur when the child is young and critical periods for the formation of language and other skills are programmed to occur. If this is prevented by the limited environment, then the child does not develop these skills because by the time they are rescued the critical periods are past. In this particular case I see hope. The police said that when they found the boy and took the father into custody, the boy said, "He won't hit me this evening." So it seems that he has some language development.

Clinic Notes: Survey on Physicians Feeling Ill-Equipped to Treat Autism

In a recent survey, (see Schafer Autism Report, March 4, 2009) over 2000 physicians were surveyed about their views on treating autism in their practice. Of note, only 19% responded and those that did respond felt unprepared to treat autism. Primary care physicians, especially pediatricians, are being encouraged to screen young children for autism. And I think they are responding. I am getting more physician initiated requests to do autism evals. Of course, some physicians, such as pediatric neurologists, are involved in treating autism, prescribing medications that are helpful and doing evals. But I'm not sure what the role of primary care physicians should be in treating autism. I'm always looking for a pediatric neurologists to refer children to for medication. But often there is a long waiting period. I guess, with additional training, perhaps primary care physicians could help out there. Also some children with autism have digestive problems and that could possibly be another useful role for primary care physicians. Now pediatric gastroenterologists handle most of these cases and again there is a long wait for appointments usually. Many parents of children with autism are wary of traditional medicine, often blaming vaccines for causing their child's autism. Furthermore, many parents have turned to alternative medicine in treating autism. Other concerns reported by physicians in the survey were reimbursement problems and a lack of training. I think the real question that should be asked is do primary care physicians want to be involved in the treatment of autism.

Clinic Notes: God and ABA

In almost 40 years of clinic work with children I thought I'd seen every problem imaginable and successfully dealt with most. But then a dedicated mother of a child with Asperger's, who was working hard to mainstream him, told me about her child's struggle with the power of prayer. "School is getting harder and harder for me," her child had told her. "Why won't God help me? I pray and pray but He won't help me. Why won't God help me? Mom tried to explain that maybe God was helping by leading the family to my clinic where he received speech and ABA. But I don't think her child bought that. I live and practice in a small southern town and most of the children that I see attend Church regularly. They learn in Sunday School that God answers prayers and Asperger's kids tend to take everything literally. He was praying for help in school, but school wasn't getting any easier. In fact it was getting harder and harder and he couldn't keep up. What could I say? What could I do? I kept up the ABA drills, offered tangible reinforcers and praise. But this child wanted more than I could offer. Tonight, when this child comes for his appointment, I am going to do something I have never done. We are going to say a little prayer before we start.

Clinic Notes: Where Were All the Asperger's Children When I was Growing Up?

Children with Asperger's Syndrome tend to have social problems and eccentric behavior. Their verbal behavior, especially conversation, is often described as unusual. Speech is often abnormal with problems in inflection and their speech also tends to be repetitive. Children and adults with Asperger's tend to perseverate on certain topics in their conversation and not understand that they may be boring others. Although the diagnosis has been around since 1944, only recently are children being regularly diagnosed with Asperger's. This got me to thinking about kids I grew up with, teachers I had in school, and "characters" I have run into or heard people talk about that were described as weird, geeks, strange, not all there, delinquents, etc. Did any of them have Asperger's? And if they did what happened to them?
I do remember many of these kids were bullied and picked on and everyone made fun of them. They were also always in trouble. Interestingly, I don't remember any of them being in special ed or receiving special services such as speech, OT, or ABA. Recently, I was able to track down some of these kids I had known in elementary school on my high school website. Of course this is not a precise statistical scientific study, but they all seemed to be doing ok. They had families and good jobs. I wish I had been nicer to them back then. But now that I've tracked them down I don't worry as much now about how the kids with Asperger' who come to my clinic are going to turn out. I'm thinking they will do just fine.

Clinic Notes: Is the Increased in the Number of Children Diagnosed with Autism Real?

In a previous blog I responded to this question, but now a new study came out and in the February Issue of Epidemiology, which found that most of the increase is real. The authors state that only a third of the increase could be accounted for by changes in diagnostic criteria. Other researchers conclude that the autism epidemic is caused by diagnosing children with mental retardation and learning disabilities as autistic. I don't buy it. In my clinic I am seeing the same number of children in other diagnostic categories, but a geometric increase in the number of children with autism. We need to be looking for the cause of the increase and not arguing about whether or not it is real.

Clinic Notes: Do You Know Where Your Child with Autism Is?

Every year one or two of the kids with autism who comes to my clinic gets lost. Mom is carrying in the groceries and thinks her child is behind her, but they have darted off someplace. Or a child with autism can't sleep and gets up during the night and wanders out of the house. I caution parents about security and double locks on the doors, but some child always gets away. A civic organization in my community brought GPS bracelets for all of the children with autism who live in the county and a GPS tracker for the Sheriff Department and that has helped a lot. But some of the children don't get the bracelets or take them off and get lost. So far all have been found safe, but tragedies have been reported in other communities.
Google upgraded its mobile maps and tracking people who have a mobile phone is now going to be as easy as surfing the internet. Of course, some type of sensor will have to be made available for children with autism, hopefully something they can't take off easily, but that shouldn't be a big problem. I don't know how many children with autism are lost each year and drown or suffer some injury or other fatality each year. If this new Google technology saves just one child it would be worth it. And I wouldn't be surprised if Google would foot the bill.

Clinic Notes: Parenting a Child with Autism

Most of the children I see in my clinic each week have a diagnosis of autism. Over half of the children we see we are able to mainstream, but it is apparent to everyone that these children will never be completely normal. Parents of these higher functioning children with autism will be able to lead a semi-normal life. For parents of children with moderate to severe autism are not as fortunate. In a recent Schafer Report (January 23, 2009), two articles discuss how having a child with autism "wrecks a parents' life." Furthermore, Dr. Fitzpatrick, author of Defeating Autism: A Damaging Delusion argues that various biomedical treatments that promise to defeat autism now are offering a "false promise" to "grieving " parents.
In my experience, biomedical treatments have not lived up to their promise and multiple disciplines-speech, occupational therapy for fine motor deficits, ABA, and for some kids medication are the only effective therapies. While these therapies can make life better for the child and the parents they do not come anywhere close to curing autism. Certainly, having a child with autism can wreck a parents' life, but getting competent services can help.

Clinic Notes: What the Future Holds for the Child with Autism

Here's a stat to think about. At least 80% of 19 to 30 year old adults with autism are still living at home. Now factor in the increasing numbers of children with autism and it is not hard to forecast a crisis coming in a decade or so. It wasn't long ago that when one of the children in my clinic reached 18 and graduated from high school that I could get them in a group home and a sheltered workshop in a few months. Now it takes years, if it ever happens, because the waiting list is so long and few new group homes and sheltered workshops are being built. In my clinic we mainstream over 50% of the kids with autism we see. I don't know many of these kids will be able to find mainstream jobs when they grow up. So more kids being diagnosed with autism now means more adults with autism in the future. For those of us who work in the autism field it looks like we are getting an autism sandwich.

Clinic Notes: Testosterone in the Womb Related to Autistic Characteristics in Children

Professor Simon Baron-Cohen and his associates at Cambridge have found that babies exposed to high levels of testosterone in the womb have autistic traits such as poor social skills, a lack of imagination, a lack of empathy, less eye contact, and slower language development. This finding supports Baron-Cohen's hypothesis of "extreme male brains" in children with autism. (I note excessive body hair in any of the children with autism that I see in my clinic so I am not surprised.) This finding could lead to a prenatal test for autism and ABA could be started at an early age perhaps preventing autism.

Clinic Notes: Scientology and Autism

Jett Travolta's death is tragic. There is a lot of speculation regarding the role of Scientology in his death with some suggesting that his seizures could have been easily controlled with medication. In my clinic I see many children with various seizure disorders, as well as children with autism, 30%, of whom have seizures. Any pediatric neurologist will tell you that sometimes seizures can be hard to control with medication or a combination of medications. Usually the next step is to implant a vagus nerve stimulator, which delivers a mild shock to the brain when seizures start. Often this works, but not always. Surgery is the next step--cutting the corpus callosum, which connects the 2 hemispheres of the brain or more drastically removing a hemisphere. All of these procedures have side effects and often a decision has to be made as to whether or not the patient would be better off without treatment. I don't know the details of the Travolta case and I certainly take issue with Scientology's view of autism. But in this tragic case I think it is best for everyone to stop writing and speculating and give the family some privacy. And peace.