Clinic Notes: School and Autism

Many parents who have children with autism have problems deciding on what to do about school. Most public schools put children with autism in special ed classes along with children with a variety of other diagnoses. Usually, the education and behavioral management is not adequate in these special ed classes for the child with autism. The school may say that they offer ABA, which usually means that they have sent a special ed teacher to a one day ABA workshop. If parents home school the child with autism the child may fare better because sensory issues are often less and the parent can target their child's educational needs. The downside of home schooling is the lack of socialization. A recent study in Australia found that children with autism who went to weekly play groups developed social skills. A lack of exposure to play groups delayed social development on the other hand. I think some parents, depending on their child's special needs, should consider home schooling in the early years along with weekly playgroups. Home school curricula that meets state requirements are easily available and if the parent can get some ABA training then this may be a better option for many children with autism.

Autism and Ipads

Autism is a communication disorder. Some children with autism are completely non-verbal, some have articulation problems and are difficult to understand, while others have problems with pronouns, tense, or sentence structure. Some children with autism learn to communicate by pointing and/or tantruming when the do not get what they want. Many of the behavioral problems seen in children with autism are due to the frustration over not being able to communicate. Sign language and Picture Exchange Communication System (PECS) have been used in the extensively to try and establish communication in children with autism. Recently, electronic communication systems where a child presses a button with a picture on it and a computer generates a voice which "speaks" for the child has been the treatment of choice. These systems work very well, they are easy for the child to use, and the frustration over not being able to communicate disappears along with the behavioral problems. Unfortunately, these communication devices cost around $8000. The Apple Iphone can be converted into a mini electronic communication device with a download from the Istore and I understand that the new IPad has a similar app. The Ipad will be much more affordable but will not have as many options or be as indestructible as the $8000 device. Since language acquisition by age 5 is a good predictor of how children will do the cheaper IPad is something to consider.

Clinic Notes: The Onset of Autism

Everyone knows by now that the earlier ABA is started for children with autism the better. The problem is there are no biological markers so inferences have to be made from behavior. The categorization of autism into infantile, where the disorder is supposedly present at birth, and regressive, where development is normal until between 2 and 3 has fallen out of favor. According to one study that looked at homemade videos signs of autism were present in children latter diagnosed with regressive autism. As a clinician, I was never satisfied with this study. I think there are cases of regressive autism where signs were missed but I still think most parents are right when they tell me everything was normal until 21/2 years or so. A new study from the Kennedy Krieger Institute finds this "lost" distinctions may be vital as far as prognosis. When children with early onset of symptoms (infantile) were compared to children with later onset (regressive) it was found that children with regressive were more severely impaired and need more services. Of course, the earlier the ABA the better for the early onset children, but apparently no biological or behavioral markers for the children with regressive autism.

Clinic Notes: Autism and Driving

For most teenagers driver's ed and getting a driver's license is a rite of passage that they can't wait for. However, many kids with high functioning autism and Asperger's find the thought of driving stressful. I have had a number of kids on the spectrum in my clinic that simply had no interest in driving. Others found driver's ed very stressful. Some had no problem learning the necessary skills for driving, but once driver's ed was over they had no interest in taking the test to get their license. Sydney University in Australia has begun a specialized driving program for kids with Asperger's. They also report high anxiety levels because of the coordination of sensory and motor systems that driving involves. So far there are no reports on the success of their program. I am interested because in the kids that we are able to mainstream a lack of public transportation in the rural area where I practice is going to mean driving to a job.

Clinic Notes: World Autism Awareness Day

World Autism Awareness Day is being celebrated April 2. The Secretary of the United Nations is calling for a "Community of Voices to Promote Greater Awareness." For those of us who work everyday with children with autism and for parents of children with autism it is hard to believe that there is a need for more awareness since it occupies our time 24-7. But there is. Many people just don't understand the battle that is being waged over funding, research, and treatment. I do think there is some good news. Parents of children with autism and professionals who work with children with autism are becoming more aware of what works and what does not work. Of course, there are still intense arguments about causes of autism--especially over vaccinations. But most caregivers are settling into mainstream treatments like ABA, speech, occupational therapy, and when necessary medication. More and more parents who come to our clinic are already acquainted with ABA and other mainstream treatments and have decided that ABA should be the treatment for their child. Funding for ABA and finding qualified experienced ABA professionals is now the challenge, as it is for other mainstream treatments. And the waiting line for diagnosis is still too long.

Clinic Notes: The New Heath Care Bill and ABA

As everyone knows by now, the Health-Care Reform Bill has passed both Houses and been signed into law by President Obama. The Autism Society issued a statement saying "that Congress took a step in the right direction, . . but we have much more work to do to ensure that families affected by autism have access to appropriate services . . ." The new bill requires coverage for ABA therapy, which many insurance companies were denying saying that ABA was experimental. Good news so far. Now we will see how it's implemented. Thirteen states have filed lawsuits contesting the passage of the bill. We will have to wait a while to see how the ABA coverage is implemented and the actual coverage required. TennCare will pay for ABA in the state where I live and practice. The problem is the the reimbursement rate is $18 dollars an hour. With my overhead I cannot afford to take TennCare patients. Hopefully, the new law will be better.

Clinic Notes: Medication and ABA Redux

My last blog on medication and ABA prompted several insightful comments that I would like to address. First of all I am not pro med. Medication should only be used as a last resort after more conservative behavior therapies have been implemented. And this is what I tell parents who bring their children to my clinic. Furthermore, medications may facilitate other therapies but they will not "cure" or manage the behavior problems by themselves. Medication trials should only be initiated when the potential benefits of the medication clearly outweigh the potential side effects of the medications. If the medication trials do not show a clear effect in increasing the quality of life for the child then the medication should be discontinued. THIS "BEST PRACTICE" GUIDELINE SHOULD BE FOLLOWED BY EVERY CLINICIAN AND PARENT.
Now potential medications can be evaluated in a multi-child study with as much scientific control and safety guidelines as possible. It is difficult to get approval for these studies because the committees in charge of protecting subjects usually turns them down. Often, when these studies are done they are post hoc where medical records of subjects receiving the medications and a control group are examined. These studies usually show no differences between the control group and the medication group. More commonly medications are "evaluated" off-label in a clinical setting. A child having problems in school is given an ADD drug because the parents and teachers complain that he child will not stay on task. Ideally, a behavior program should be implemented first but that is not always done. And the criteria for success should be clear. Parents and teachers may report that the child on the ADD drug is paying attention better. But an examination of the child's grades often show no improvement. The child is easier to manage but that is not enough.
Clearly, there are many children who are over medicated and/or miss-medicated. But there are also a lot of children who could not function without their medication. Clinicians and the public need to be very careful in distinguishing between the two groups.

Clinic Notes: Medication and ABA

The popular press has carried a number of stories recently about the large number of children in our society being over-medicated with psychoactive drugs like Prozac, Ritalin, or Risperdal. These stories quote the possible multiple side effects of these drugs and the harm that could be done to these innocent children. Uncaring parents that don't have time for their kids and careless doctors prescribing, "dope" is the image that is portrayed. Often the first thing parents tell me when they bring their children to my clinic is, "We don't want medications." So where are the uncaring parents and careless doctors? Well, actually they are hard to find. A child on medication is usually a sign of good parenting. I tell parents we will try to do everything we can behaviorally and then see if medications are necessary. And often, about half the time medications are necessary. About 80-90 percent of the children I see each week are on the Autism Spectrum and about half are on medication. Applied Behavior Analysis (ABA) seems o be facilitated by medication in many cases.

Clinic Notes: Does Early ABA Rewire the Brain?

In the developing infants brain billions of axons (nerve fibers) that conduct electro/chemical messages follow growth cones through a tangled web of other axons to arrive at their final destination and connect different areas of the brain. Genes that encode the molecules that guide the growth codes somehow go awry and miss the pathway they are supposed to be following. This mis-wiring is likely the cause of autism, Parkinson's disease, and perhaps other disorders. During development, as different areas of the brain are wired up, the infant then displays new behaviors. Around age four, the majority of the connections are made and there is a die of neurons. The wiring process continues throughout life, but at a much much lower rate. Hence the importance of early intervention. I think that early intervention, especially with ABA, rewires the brain and improves the behavior of the child with autism. Studies support the improvement of children with autism following ABA but do not specify the mechanism.

Clinic Notes: Autism's Earliest Symptoms and ABA

At the Childrens Treatment Center (www.Childrenstreatmentcenter4autism.com) I see 40+ kids a week. Most of these children have autism and are helped by ABA. Naturally, with autism being epidemic, I have been looking for signs of autism in my grandchildren from birth on. Studies have found that if intensive ABA is started early enough the symptoms and the diagnosis of autism may disappear and I want to be ready. Normally developing infants show some signs of autism at times--staring at objects--not responsive to stimuli--avoiding eye contact--etc. The question is when in the infant's development are these signs clinically significant. A recent study from the MIND Institute finds that symptoms like eye contact--smiling and communicative babbling are not present at 6 months, but develop gradually and only become observable during the latter part of the first year of life in infants. Furthermore, these behaviors appear they decline slowly, not suddenly in infants with autism. So watch your infant from 6 to 12 months and be prepared to start ABA if you notice these declines.

Clinic Notes: Children with Developmental Disabilities and God

According to a recent Schafer Report, Bob Marshall, a legislator in Virginia, said in a press conference that disabled children are God's punishment because mom's had prior abortions. The press conference was a group of 20 or so clergy who were opposed to state funding for Planned Parenthood who provides abortions. Well, I see 40 plus kids in my clinic each week and their parents are struggling with the stress of raising a child with special needs and the last thing they need is to hear is that it's God's punishment. I guess I'm going against God for providing ABA and behavior management for these families. It will be interesting to see what fellow Republican Sarah Palin says about this. And by the way Mr. Marshall, none of the moms of disabled children who come to my clinic had an abortion.

Clinic Notes: Mandatory Insurance Coverage for ABA for Autism

The Virginia Senate Passed a bill requiring insurance companies to pay for ABA, the most effective treatment for autism. The lobbyist for the health insurance company fought hard, but lost. Other opponents argued that the mandated coverage would result in higher coverage, perhaps even forcing some employers to drop insurance coverage for their employees. Autism Speaks said that mandated coverage would increase the cost by $10 to $25 per year. Tennessee, the sate where I live and practice, passed the Autism Equity Act several years ago which said that if insurance companies cover other neurological disorders then they must pay for autism. Parents have told me that when they have called the insurance companies to remind them of this they say their home office is not in Tennessee so they do not have to comply with the bill. Also ERISA, or employee funded insurance companies are exempt. If mandatory insurance coverage for ABA becomes law in Virginia I hope families fare better than Tennessee.

Clinic Notes: Autism and Wakefield

Lancet has formally retracted Dr. Wakefield's paper that purportedly found a link between autism and the MMR vaccine. His "finding" made so much sense. Mercury is toxic to the nervous system and autism is usually diagnosed between the second and third year shortly after the MMR vaccine is given to children. But it was a flawed study and better-done research has found no link. Many parents are still convinced though and yelling cover up by government and the pharmaceutical industry. Recently, it was time for my grandchildren to get their MMR vaccines. I'll admit that I cringed. I know that's it's very difficult for a parent who has a normally developing child to see them regressing after the MMR vaccine. It is not a causal link, but so emotional and hard for parents to put aside. But it is time to move on and look for the real cause of autism.

Clinic Notes: Successful Treatment of Autism Depends on Parental Involvement

Many studies have shown that early diagnosis and intensive therapy is the key to the successful treatment of autism. Multiple therapies including Applied Behavior Analysis (ABA), speech therapy, occupational therapy, and medication are essential. Parents must not only find a way to pay for these services, but get their children to therapy, which is usually weekly. (Unfortunately, money, or the lack of it, determines what services, if any, a child with autism will receive.) Only a small percentage of parents can afford, or find qualified therapists who will see their child more than once a week. Autism is epidemic and money speaks. Lovaas recommends 40 hours of ABA a week, but who can afford that or find a therapist who will give a single child an entire workweek. So the majority of the therapy--ABA, speech, ot, etc falls to the parent. It's a burden--but one that pays off in the long run.

Clinic Notes: Let's Just Bury our Heads in the Ground and Autism Will Go Away

Well here's a cheap and quick way to cure autism--just say it is not a medical disorder or disability but a "socially created disability," whatever that is. Apparently, that's what President Obama's nominee Ari Ne'eman to a national disability council is saying. Mr. Ne'emans, who has very mild Asperger's, is against investing money in anti-cure autism research. Well, that's going to thrill parents who bring their children with autism to my clinic. I glad that Mr. Ne'emans has overcome his disorder and is in a position to be nominated, but I don't think he would be any parent of a child with autism first choice. I doubt that he has seen children with autism banging their heads or biting themselves. Or children with autism who have developmental delays in all areas including language. I don't know how this was socially created. Perhaps the next time a mother brings her child with autism to my clinic complaining that throwing feces is a problem at home and school I will just say, "That's just a socially created disability."

Clinic Notes: Darwin and Autism

Autism is considered to be a genetic disorder by many and numerous researchers are looking for the "autism gene." The concordance rate for autism (the probability for getting autism) is 60% for identical twins, but drops to between 4-8% for fraternal twins and non-twin siblings. In most cases, the number of individuals with a genetic disorder remains constant in within a population unless an individual with the disorder breeds. In the past ten years there has been an explosion in the number of children diagnosed with autism. If autism is a genetic disorder, then why the dramatic increase? Is it evolving in the population? That would not make sense. Natural selection couldn't be operating here and mutations are unlikely with such an explosion of cases. I wonder if epigenetic markers could be a factor. Epigenetic markers sit on genes and tell them to switch on and off. Stress, diet, etc can cause epigenetic marks can switch genes on and off and affect what is passed on the offspring. So if this idea is correct, and I admit this is a long shot, what happened to the parents of the children with autism that perhaps affected the wiring of their brains? Please email me with your hypotheses.

Clinic Notes: Autism and Diet Redux

Okay another study, this one by Dr. Timothy Buie of Harvard Medical School, says that digestive problems are not more common in kids with autism and special diets do not work. Furthermore, there is no evidence of a "leaky gut" as reported by Andrew Wakefield who first suggested the link between autism and the mercury preservative in measles vaccine. The scientific evidence is overwhelming, but the myth persists. Many children who come to my clinic are on a gluten free diet, but I've never seen any improvement and I have seen very few children with autism who have digestive problems other than being finicky eaters. The special diets cause no harm, other than in some cases, depriving the child of therapies like ABA, which require more effort

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.