Autism Q & A: What’s ahead?

On Sept. 30, 2011, President Barack Obama signed the Combating Autism Reauthorization Act (CARA) into law.

The original Combating Autism Act of 2006 created a number of initiatives that are now bearing fruit. Under that piece of legislation, funding provided to the Health Resources and Services Administration (HRSA) and the Maternal and Child Health Bureau (MCHB) developed the Combating Autism Act Initiative (CAAI) to further address autism spectrum disorders and other developmental disabilities.

Under this initiative the MCHB expanded training programs in Developmental and Behavioral Pediatrics and created two Autism Intervention Research Networks—one focused on physical health interventions and one on behavioral, mental, social, and/or cognitive health interventions. These research networks were to focus on intervention research, tool validation for interventions, guideline development and information dissemination to health professionals and especially families impacted by autism spectrum disorders and other disabilities. The results of this work will soon find its way into the hands of both professionals working with children and families and to the families themselves.

These efforts will focus on a number of areas important to families dealing with autism. One important area that is being focused on (and has more typically been the domain of non-traditional practitioners) involves the many associated medical conditions often seen in children with autism including seizures, sleep problems, gastrointestinal problems, psychiatric conditions, nutritional deficiencies and metabolic conditions. Into this effort the Autism Treatment Network (ATN), an effort supported by Autism Speaks, and involving 17 treatment and research centers in North America, has taken on the task of the Autism Intervention Research Network on Physical Health (AIR-P).

The fundamental mission of the AIR-P is to initiate research that can lead to improved care for children on the autistic spectrum (ASD) and they have developed a five year plan to focus on the treatment of associated medical conditions in children with ASD.

Activities funded under this initiative have focused on several areas including an assessment of nutrition, non-pharmacological treatments to improve sleep in children with ASD, the training of professionals, and the development of tool kits for parents and professionals (that are now available online at www.autismspeaks.org) that are aimed at empowering parents and individuals with ASD.

Clinicians in the network partner with family advisory committees to develop new ideas for tool kit development. One such example is a medication decision aid called, “Should My Child Take Medicine for Challenging Behavior.” Other tool kits have focused on topics such as blood work in children with ASD, sleep, visiting the dentist and the use of visual supports to facilitate medical care. Studies have begun to focus on the use of psychotropic medication as well as complementary and alternative medicine use. Centers are evaluating issues related to quality of life in children with ASD and their families.

While much work remains to be done and funding still needs to be provided, these are indeed exciting times. I truly believe that information is power and misinformation is toxic. I vote for information.

Daniel B. Kessler, M.D., is a developmental and behavioral pediatrician and medical director of the Children’s Developmental Center at Easter Seals Southwest Human Development. His private practice, where he provides evaluation and treatment for children and adolescents, is located at Southwest Human Development.

The views he expresses in this series are based on his training, his reading of the literature and his more than 30 years of experience taking care of hundreds of kids on the autism spectrum. This is his final article in the series, which begins here.

Autism Q & A: Is autism really increasing?

By Daniel B. Kessler, M.D.

The rates at which children are being diagnosed with autistic spectrum disorders (Autistic Disorder, Asperger Syndrome and PDD-NOS) continue to rise. The latest numbers are that one in 88 children are diagnosed with autism nationally and the figure is higher in Arizona. But those numbers don’t necessarily mean more kids are becoming autistic. There is in fact disagreement about what these numbers mean.

It is very likely that a large part of the increase is due to the expanded definition and broader use of the autism spectrum concept, as well as wider awareness of the disorder(s). The fact that there is better understanding of the kinds of educational, speech and behavioral interventions that are available to support children with autism and their families and the likelihood that kids will do better with these supports is an incentive for families to get the correct diagnosis earlier and earlier. There has also been a large effort underway to increase the availability of clinicians experienced in making the diagnosis and better diagnostic tools. But is there something else also going on? Some advocates for children believe that only about half of the increase in identification can be explained by “better and broader diagnoses.” What else is going on here?

As has been true in the past is true in the latest numbers. They vary from location to location across the 14 sites where these latest numbers originate. And while they seem to be increasing one year to the next there is no certainty that they can’t go back down as well. While they appear to exist in every ethnic, racial and socioeconomic group they differ from group to group (though they appear to be increasing in each). Is this an issue of access to services? Is this an issue of different cultural interpretations of disability? As is often the case it is usually “all the above.”

What is true, and this is probably a good thing, is that having a child with autism is no longer a rare event. What can possibly be “good” about this? Families of children with autism are not alone. People are seeing individuals with autism in multiple settings and with varying abilities. I have the good fortune to know a number of very remarkable high-functioning adults on the spectrum and they, like the rest of us, have different strengths and different challenges. Just like the rest of us.

Next: Is autism really increasing? 

Daniel B. Kessler, M.D., is a developmental and behavioral pediatrician and medical director of the Children’s Developmental Center at Easter Seals Southwest Human Development. His private practice, where he provides evaluation and treatment for children and adolescents, is located at Southwest Human Development.

The views he expresses in this series are based on his training, his reading of the literature and his more than 30 years of experience taking care of hundreds of kids on the autism spectrum. The series begins here.

Autism Q & A: What about alternative treatments?

By Daniel B. Kessler, M.D.

Are alternative treatments harmful? Well, it depends on your definition of harmful. Here I relate the story of Secretin. Secretin is a hormone that helps to regulate digestive functions. It is also considered a neurotransmitter or chemical messenger, based on animal studies that demonstrate effects on the central nervous system. As a hormone, it exists normally in the body. Synthetic secretin is sometimes given intravenously to treat peptic ulcer and in the evaluation of pancreatic function.

A small, uncontrolled case series (reports of the experiences of three children on the autism spectrum who received synthetic intravenous secretin during a routine endoscopy evaluation for gastrointestinal problems) resulted in the funding of the largest controlled trial of an alternative treatment for autism ever conducted. The initial report noted that within five weeks of the secretin infusion the children experienced “a significant amelioration of” their gastrointestinal symptoms but also a “dramatic improvement in their behavior, manifested by improved eye contact, alertness and expansion of expressive language.” The same results were reported after a second infusion given weeks later.

Extensive media coverage caused parents to scramble to obtain this latest miracle cure for autism in the absence of any data to support its safety or benefit. Clinics were popping up in strip malls and corners where desperate parents paid upwards of $1,500 for infusions of secretin. They pleaded with their congressmen to make this treatment available and covered by insurance.

The federal government sponsored multiple well-controlled studies often comparing the results of secretin with an infusion of saline (salt water solution) as the control or “sugar pill.” Despite the suggestion of early benefits, no study showed significantly greater improvements in measures of language, intelligence, or autistic behaviors when compared to study participants who received saline. Both groups showed some improvement. There was simply no evidence that secretin worked as a treatment for autism.

The controversy continues with some individuals recommending oral forms of secretin and transdermal secretin. You simply cannot convince someone of something they don’t want to be convinced about. These parents are in many cases spending time, effort and a great deal of money to provide an unproven treatment for their child. They are not pursuing treatments that are more likely to provide benefit.

You may have guessed that I am not a big fan of alternative (often called biological) treatments for autism. Most have not been studied to the degree that secretin was. Those that have been studied have produced results that are just as disappointing. Most of these biological treatments are based on theories of autism that have yet to be proven. These theories are then used to “develop” treatments without scientific rigor. They deserve to be studied in a rigorous, scientific way and some of that work is being sponsored by the Autism Treatment Network. Until that work is done and results are known, it is unlikely that I will recommend those treatments to any family, but there is no shortage of families and doctors that will.

Next: Is autism really increasing? 

Daniel B. Kessler, M.D., is a developmental and behavioral pediatrician and medical director of the Children’s Developmental Center at Easter Seals Southwest Human Development. His private practice, where he provides evaluation and treatment for children and adolescents, is located at Southwest Human Development.

The views he expresses in this series are based on his training, his reading of the literature and his more than 30 years of experience taking care of hundreds of kids on the autism spectrum. The series begins here.

Autism Q & A: What are the side effects of medications used to treat autism symptoms?

By Daniel B. Kessler

I tell parents that you can see any side effect from any medication at any time.  Maybe your child has just started to take a new medication, or it has been several weeks since he or she started it. Maybe the dosage has recently increased.

Whatever reaction, response or side effect you are seeing in your child could be from that medication, or not.  If you are concerned, ask the provider who prescribed it and you should have access to someone who can answer that question for you.

Every medication has its own side effects profile and this information should be given to you. If it is not, ask for it. The general categories of side effects may include physical responses (weight gain, rashes, stomach difficulties, changes in blood pressure), behavioral reactions (hyperactivity, irritability, aggression, sleepiness or trouble sleeping), emotional overreactions (meltdowns, crying, agitation), unusual sensations (visual hallucinations) or unusual movements like tics or dystonia, a neurological movement disorder that causes twisting and repetitive movements or abnormal postures.

This can be confusing because some of these side effects  are just like the behaviors that are being treated!

Whenever you suspect a response may be a side effect related to a medication, you should consider whether or not there are other symptoms or behaviors that suggest another underlying cause, like seasonal or contact allergies to something else in the child’s environment. You may need to have your child seen by his or her primary care provider (or in an ER) if the reactions are confusing or potentially dangerous (such as a seizure).  Document what is going on so that when you report the side effect to your medical provider you can  explain when it started in relation to when the medication started, what time of day the reaction started in relation to when the medication was given, how long the reaction lasted (or is it ongoing) and what helped alleviate it.

Next: What about alternative treatments? 

Daniel B. Kessler, M.D., is a developmental and behavioral pediatrician and medical director of the Children’s Developmental Center at Easter Seals Southwest Human Development. His private practice, where he provides evaluation and treatment for children and adolescents, is located at Southwest Human Development.

The views he expresses in this series are based on his training, his reading of the literature and his more than 30 years of experience taking care of hundreds of kids on the autism spectrum. The series begins here.

Autism Q & A: What medications are available to treat autism?

By Daniel B Kessler

There are no medications that treat the core challenges of autism, though you can bet the pharmaceutical companies and autism research centers are working on developing some. What we do have available treats only the symptoms or behaviors but that is often so important by itself.

If a child’s behavioral (disruptive behavior or aggression) or emotional (anxiety, obsessive tendencies, sensory overload, meltdowns) challenges limit his or her ability to participate in and therefore benefit from educational, therapy or recreational activities, then these symptoms may be legitimate targets for a medical approach (that means the judicious, careful trial of medications). Medication, used appropriately, doesn’t control behavior. It should allow the child to be in control of his behavior.

The decision to use medication rests with parents. Don’t let anyone tell you different. Find someone to answer your questions and address your fears. Talk to parents who have decided to go ahead and place their child on medication and those that have not. Ask them to let you know their reasons and experiences. But be careful about third-hand accounts (“I know one parent whose sister’s kid had a really bad reaction to ____”).

No parent is excited about having to use medication. Every medication has potential side effects — even “over the counter” medications or “natural” supplements.

But there is also a cost to not getting help for these behaviors. The child may not benefit as much as he or she could. While on medication a child may do better; progress more quickly, with the ability to better regulate their behavior or emotional reactions. Once again, information helps. Ask questions. Look at reliable sources of information. What is this medication supposed to do? How does it work? How long will it take to show a benefit? Has it been studied in children with autism? Has it been shown to be safe and effective? If not FDA-approved and being used off-label* has it been used for children with autism? Has this doctor used it to treat kids with autism?

Next: What are the potential side effects? 

Daniel B. Kessler, M.D., is a developmental and behavioral pediatrician and medical director of the Children’s Developmental Center at Easter Seals Southwest Human Development. His private practice, where he provides evaluation and treatment for children and adolescents, is located at Southwest Human Development.

The views he expresses in this series are based on his training, his reading of the literature and his more than 30 years of experience taking care of hundreds of kids on the autism spectrum. The series begins here.

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*Off-label use is the practice of prescribing a medication for a condition, or an age group, for which it has not been reviewed and “approved” by the Food and Drug Administration.  It is up to the manufacturer of the medication to submit an application for approval. However, the FDA does not have the legal authority to regulate the practice of medicine, and any physician may prescribe a drug off label.

Autism Q & A: What if I disagree with the services provided for my child?

By Daniel B. Kessler, M.D.

Budgets are the biggest obstacles to getting appropriate services for kids with autism. The reality for school administrators is that resources are limited and available resources drive choices of the services that schools can offer. It’s not that schools want to do “bad” by kids, but with limited budgets in a down economy they are faced with taking money from one group of kids and spending it on another. Never is this an easy choice. On the other hand parents of kids with special needs want what the law and increasingly the courts say is the most appropriate service. Find out what is appropriate for your child and never take no for an answer.

All children are entitled to a “free and appropriate education” (FAPE). This requires a comprehensive evaluation in all areas of suspected disability. In addition, many school district personnel will tell you that autism is a medical diagnosis (that is true), so they cannot test for it (that isn’t exactly true). Autism is also an educational eligibility category (at least by kindergarten age) and the Ninth Circuit Court of Appeals, which covers Arizona, has ruled that to not test for autism denies a student access to FAPE.

If the school district performs an evaluation that the parents disagree with or does not have sufficient resources to do the necessary evaluation, parents have the right to request an Independent Educational Evaluation (IEE) at public expense. If the school district provides you a list of evaluators to choose from, you have the right to pick another evaluator as long as that person has the appropriate credentials.

Parents are their kids’ best advocates and they are in the best position to be so. I can’t give you better advice than that provided by the Coordinated Campaign for Learning Disabilities:

• Know the rules (get help from Raising Special Kids, Arizona Center for Disability Law, Wrightslaw.com)

• Keep records (maintain an organized file of your child’s evaluations)

• Gather information (using reliable sources)

• Communicate effectively (adversarial stances are less effective, except when facing intractable professionals or administrators)

• Know your child’s strengths and interests and share them with educators

• Emphasize solutions (work together to identify ways to improve your child’s experience)

• Focus on the big picture (“don’t sweat the small stuff”) and

• Involve your child in decision making as early as you can and whenever possible (listen to the child).

Next: What medications are available to treat autism?

Daniel B. Kessler, M.D., is a developmental and behavioral pediatrician and medical director of the Children’s Developmental Center at Easter Seals Southwest Human Development. His private practice, where he provides evaluation and treatment for children and adolescents, is located at Southwest Human Development.

The views he expresses in this series are based on his training, his reading of the literature and his more than 30 years of experience taking care of hundreds of kids on the autism spectrum. The series begins here.

Autism Q & A: What about social skills?

By Daniel B. Kessler, M.D.

I believe the core challenge of autism is a social challenge. I believe that social/emotional IQ is more predictive of success in our world than is cognitive IQ. Of course, that depends on your definition of success. What I wish for my families and their children is for them to be both happy and successful in three areas: school or related activity (the work of children), home and friends/leisure time activities. That’s what I wish for all kids, mine included. I want them to find work that is meaningful to them. I want them to love it and be good at it. I believe social skills are at the core of this success.

I tell parents and believe strongly that social skills can be learned but they must be taught. Taught the way we teach reading and the way we teach math. We don’t put kids who cannot read into a room of good readers and expect it to rub off. We can’t teach children with autism social skills by simply putting them in a room of typical kids. They need specific curricula, role playing, practice and homework (sorry kids). It can be done but mostly we aren’t doing it. It’s expensive. But it’s not as expensive as it would be to support them on public funds. Is it not better for everyone that children with autism become productive members of their community? Parents might need to be creative and consider partnering among themselves or with their school districts through the use of combined tuition tax credits to support additional services for their kids. It’s not easy but it’s important.

Next: When parents disagree with the services provided to their child.

Daniel B. Kessler, M.D., is a developmental and behavioral pediatrician and medical director of the Children’s Developmental Center at Easter Seals Southwest Human Development. His private practice, where he provides evaluation and treatment for children and adolescents, is located at Southwest Human Development.

The views he expresses in this series are based on his training, his reading of the literature and his more than 30 years of experience taking care of hundreds of kids on the autism spectrum. The series begins here.