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.