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.

Clinic Notes: Autism and Timeout

Well it happened again. A child placed in a "seclusion room" or timeout room without supervision hanged himself. Timeout is an often used and mis-used procedure. When done properly it is very effective. When done improperly it is not effective and is some rare cases deadly. No child should be placed in a room alone without an responsible person observing the child all the time. On my website, www.aba4autism.com I give specific information for using timeout and when not to use time out. There needs to be rules enacted to regulate the use of timeout. Timeout does not need to be banned or abuse will increase.

Clinic Notes: The Cost of Autism

According to a recent Schafer Report article, over half a million families who have a child with autism are having financial problems. They pay more for autism treatment than parents of children who have other chronic diseases. I am not surprised. In my clinic I see this everyday. Children with autism need ABA, which insurance companies call "experimental" and do not want to pay for. School systems do not want to pay either even though ABA is the most effective treatment. Sending teachers to an ABA workshop is enough they tell parents. Of course, OT, SLP, and other therapies are also necessary and expensive. And these therapies may be needed for years. If we can start these therapies early we can mainstream many kids with autism and ultimately save money if these children can become self-supporting as many can. Hopefully, the new administration's health care plan will provide some relief to these families.

Autism and the Christmas Holidays

I am reposting this from a previous blog for the holidays
12-1-05
I have had many parents of children with autism or other neuropsychological disorders tell me that the Christmas holidays are an especially difficult time for them. Of course, any holiday can be difficult for any child with the changes in routine. But Christmas is usually the most difficult holiday for parents of children with autism or other neuropsychological disorders.
There are no sure-fire techniques to use with your child that will insure a "Martha Stewart Christmas." Families who have children with autism or other neuropsychological disorders have used the following 10 tips to make their Christmas better. And this year I'm adding a new suggestion to the list.
Several years ago Leigh Grannon and I did a study using pictures to increase social interactions in a child with autism. Children with autism are visual learners, and I have suggested to parents that they take pictures of what is going to happen at Christmas--the tree, the gifts, the relatives--and starting several weeks before Christmas show these pictures repeatedly to the child with autism. Tell a little story to the child while he/she is looking at the picture about how to behave, what's going to happen, and what the child can do if it is too much. Include your child in the pictures if possible. A picture of the child going to his room to escape the noise and confusion when he/she gets overloaded seems to help, too.
1. Try to keep your child in his or her usual routine as much as possible.
2. Sensory over stimulation—the lights, the sounds, the smells, the relatives touching your child--are the main culprits during the holidays. Eliminating or minimizing these culprits are your best bet.
3. Some families who have children with autism or other neuropsychological disorders wait until Christmas Eve to put up their tree and decorate.
4. Some families let their children with autism or other neuropsychological disorders do all of the decorating. Children with autism or other neuropsychological disorders may line up or stack decorations rather than decorate in the traditional way, but so what.
5. Rather than try to do the Christmas shopping with children with autism or other neuropsychological disorders in a crowded, noisy mall, many families shop by catalogue or online and let the child point to or circle the toys he/she wants. Websites, such as www.stars4kidz.com, offer a variety of toys for children with autism or other neuropsychological disorders. Just type "autism toys" in your search engine.
6. Tactile toys are often a better choice for children with autism or other neuropsychological disorders. Toys that make sounds or involve too much stimulation or are too complex may not cause an aversive reaction in the child. As mentioned above there are web sites that sell toys designed for children with autism or other neuropsychological disorders. Try ordering some of these toys and then let your child select the ones to play with as they are unwrapped.
7. Talk to relatives before they come over about the best way to behave with children with autism or other neuropsychological disorders. Have them read my article, “What Horses Tell Us About Autism,” which is available for free on the second page of my website.
8. Generally, kids with autism or other neuropsychological disorders do better in the morning than in the late afternoon or evening when they are tired. It may be better to schedule Christmas events at these times.
9. The parents of children with autism or other neuropsychological disorders need to relax themselves. Often the child with autism picks up on the parents’ stress and that is enough to ruin Christmas.
10. And last but not least, realize that you are probably not going to have a perfect food, perfect decorations, and perfect gifts. Christmas with children with autism or other neuropsychological disorders may not be traditional, but it can still have real meaning. (Sometimes I wonder if children with autism or other neuropsychological disorders know that Christmas has become too commercial.)
I wish you and your child the happiest of holidays.
Gary Brown, Ph.D Psychologist/HSP
(Thanks to the mothers of children with autism or other neuropsychological disorders who helped me with this post.)

Clinic Notes: Will We Ever Find the Cause of Autism

Recently, it was reported that a link between rainfall and autism had been found. Children who live in cold rainy areas such as the Pacific Northwest have a higher rate of autism. The author of the study theorizes that the rain keeps the children inside where they are exposed to more toxins, electromagnetic waves, etc. It is possible to find statistical correlations with the increasing rate of autism and anything else that has increased since the early 1990's. Normally, correlations give us a clue as where to conduct more controlled studies to establish causal relationships. The problem is that science has to be ethical. So obviously we could not randomly choose a group of children and raise them in a rainy environment to see if they developed more autism cases compared to a control group. One way out of this is to develop animal models of autism as is done with other diseases. But then another problem arises with animals because a prominent feature of autism is language which is not present in experimental animals. I expect that we will see numerous studies correlating autism with numerous other variables (we have published correlation studies in this area), but then we will have great difficulty in establishing causality.

Clinic Notes: Denis Leary on Autism

"Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid," by actor Denis Leary is apparently not on the New York Times Best Seller List. What to do? How about a few stupid SAVAGE statements about autism that will make the news and get some free publicity. And I quote from Mr. Leary: "There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."
I sure hope sales don't increase!

Clinic Notes: Who Pays for ABA?

ABA is the treatment of choice for autism. But finding qualified ABA therapists, Board Certified Behavior Analyst (BCBA) and not someone who has been to a few ABA workshops, and paying for ABA are two roadblocks. Insurance companies argue that they should not pay because ABA is really more educational than medical and education is the responsibility of the public schools. Furthermore, the insurance companies argue that if they pay for ABA everyone's premiums will go up. Of course, the public schools make much the same argument--money and staff. Okay so who should pay? I know of wealthy families paying six figures a year for ABA and I know of families who cannot get any ABA. One point is who is going to pay when the kids are 21 and sitting in their parents living room with no place to go. And a parent has to stop working to stay home with their child with autism..

Clinic Notes: Mental Health Parity and ABA for Autism

Well today the Mental Health Parity bill passed in the House after decades of close votes. Oddly, the Mental Health Parity bill passed because it was linked to the 700 Billion Wall Street Bailout bill. The President says he will sign the bill. Mental Helath parity requires insurance companies to not discriminate in coverage for mental illness and physical illness. Okay this sounds great, but I'm wondering how autism will fare. Often when we seek pre authorization from insurance companies to cover services for a child diagnosed with autism we are told that we should submit to the insurance companies BHO (Behavioral Health Organization.) Some states have passed an autism equity act stating that autism is a neurological disorder and that if the insurance company's policy cover other neurological disorders it must pay for treatment for autism. (Some insurance companies will not pay for ABA because it is considered experimental despite the fact that the Surgeon General and NIMH recommend it as the treatment of choice.) So what, if anything, does the Mental Health Parity Bill do to ABA and autism coverage? Will BHO's disappear? Stay tuned.

Clinic Notes: NIH Cancels Autism Study

Chelation removes heavy metals from the body and is an effective treatment for lead poisoning. Many people believe that mercury in childhood vaccines causes autism so removing the mercury by chelation should be an effective treatment for autism. There are risks associated with chelation and the NIH decided that the risk of exposing children to chelation was unwarranted. Since many studies do not show a causal relationship between mercury and autism this was probably a wise move. Furthermore, the single case reports on chelation as an effective therapy are lacking. I have kids coming to my clinic who are undergoing chelation and I cannot see any improvement. I wish there was a quick fix for autism like chelation. I'd send all of my ABA patients.

Clinic Notes: Autism and Puberty and ABA

There is an old maxim in neuroscience, which states that anything that affects the normal brain affects the neurologically impaired brain to a greater extent. So usually fatigue, fever, injury, etc. will show up sooner and be more detrimental to a child with autism or other neurodevelopment disorders. Puberty, with its unleashing of hormones, is a difficult time for all children, but sometimes has a greater impact on children with autism. Longitudinal studies on children with autism find a setback in less than a forth of the children followed by recovery. In males I see an increase in aggression and in females difficulty in making decisions. I set up or re-initiate the ABA programs for compliance, which we run we often run with children with autism and related disorders when they first come into our clinic. In females I have found that birth control pills in addition to the compliance programs usually help.