Tag Archives: Arizona

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.

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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 is the least restrictive environment?

By Daniel B. Kessler, M.D.

What does it mean when my child is placed into the least restrictive environment? Should I want my child taught with typical kids?

Least restrictive environment (LRE) means that a student who has a disability should have the opportunity to be educated with non-disabled peers, to the greatest extent appropriate.

It is entirely understandable for parents of a child with autism to look forward to their child attending a regular classroom with typical kids. While children who experience the typical social challenges of autism will benefit from socializing with typical kids, placing them into a typical classroom doesn’t make them typical. It doesn’t rub off.

I have a problem with full inclusion of children with disabilities into regular educational classrooms immediately upon transferring to kindergarten. This would be wonderful if every teacher in our schools was trained as a special education teacher (or even understood autism), the size of the classroom was limited and the services of appropriate specialists (such as speech therapists and occupational therapists) also were available. This is not usually the case. This does not mean that certain individuals cannot make this transition remarkably well.

Rather, and this is typically true for their initial kindergarten experience, children with autism should have access to the general education curriculum, or any other program that non-disabled peers would be able to access, and be provided with supplementary aids and services necessary to achieve their educational goals. But they should be taught in classrooms more likely to meet their special education needs.

Next: Teaching social skills to a child with 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 happens when it’s time for kindergarten?

By Daniel B. Kessler, M.D.

Most children who have received special education preschool services will continue to need additional supports in the transition to kindergarten. This is usually true for a child on the autistic spectrum. Also, at age 6, children who are receiving services under the Division of Developmental Disabilities (DDD) and/or Arizona Long Term Care Services (ALTCS) will be required to see a specialist to re-certify their diagnosis.

This is where some families run into difficulties if their child has not received a formal diagnosis of autism. Based on existing state law, the diagnosis must be autistic  disorder. A child will not qualify with a diagnosis of PDD-NOS, Asperger syndrome or autism spectrum disorder. (This will become more of a problem after the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is published in May 2013, as it is widely expected that current disorders related to autism will now fall under the category of autistic spectrum disorders and there will be no “autistic disorder.”) The only way children who do not have not a diagnosis of autistic disorder can qualify for services is if they meet the criteria for one of three other categorical disorders (defined in law) that include seizure disorder, cognitive impairment or cerebral palsy. These conditions are covered by the ALTCS system by law.

It is not uncommon for a child who had been receiving services under the category of “at risk for autism” (a description sometimes used by providers for younger kids) to lose services if further evaluation fails to support a diagnosis. The child may have been receiving services including speech therapy and occupational therapy and making good progress and the family may wish to continue those supports through DDD even though the child also will be attending a kindergarten program. Parents are upset when their child “loses” the services because he or she doesn’t have the right diagnosis.

Parents should request (in writing) a comprehensive re-evaluation to determine the extent of services and supports available through the school district. Evaluations always must be performed in all areas of suspected disability. Schools often will tell parents that because autism is a medical diagnosis they do not test for it, but the courts have ruled that because autism is also an educational eligibility category (at least by the time the child is entering kindergarten), to not test for it the school is denying the child a free and appropriate education (FAPE). The bottom line is that schools must test for autism in their comprehensive assessments if there have been concerns expressed about it or parents suspect it.

Next: What it means to place a child in a “least restrictive environment.”

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: Questions about schooling

What happens to my child when my child no longer qualifies for Early Intervention Services?  What preschool services would he qualify for?  Will he continue to qualify for services outside of school?

When a child is about to turn 3 years old, his or her early intervention team will meet with your family and discuss a transition meeting with the school district he is eligible to attend. It may be determined that he will automatically continue to qualify for services or his testing will be updated from what was done in order to qualify for intervention services in the first place. However, if your child has made significant gains you might want to request an updated evaluation so that his educational program, which changes from an Individualized Family Service Plan (IFSP) to an Individualized Educational Plan (IEP), will continue to be the most appropriate to his needs.

Any child who is receiving special education services is supposed to receive a comprehensive re-evaluation every three years.  The transition should be seamless even though the team and location of services may be different.  If your child received speech therapy or occupational therapy that was home-based, this is likely to end at this time.  These services are supposed to now be provided through the school district.

However, if it is determined that these services (therapies) are “medically necessary” it may be possible to continue through your private insurance or the Arizona Health Care Cost Control System (AHCCCS).  In addition it is more likely that services under DDD and/or ALTCS will continue to support services above what is provided by school if your child is diagnosed with autistic disorder.  However, it is important to know that for most preschools in Arizona autism is not considered a preschool eligibility category though it is in many other states.  Your child is likely to be made eligible either under developmental delay (DD) or speech and language impairment (SLI) though occasionally you may see another eligibility category.

Next: The transition to kindergarten.

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: Will insurance pay for autism therapies?

By Daniel B. Kessler, M.D.

Most health insurance plans have had explicit language excluding coverage for the treatment of autism.  This is slowly changing. Increasing numbers of states are enacting legislation to require insurers to provide coverage of evidence-based, medically necessary treatments including behavioral therapies. In Arizona Steven’s Law passed in March 2008 and became law on July 1, 2009.

There are specific “loopholes” in the law related to individuals or families with individual policies, companies with fewer than 50 employees and large, self-insured companies. Our AHCCCS Plans are exempt, though in one state the courts recently ruled that their Medicaid program must cover Applied Behavioral Analysis (ABA) under Early Pediatric Screening Diagnosis and Treatment (EPSDT) provisions. Additional coverage for services for autistic individuals is written into the Affordable Care Act and these benefits are scheduled to take effect in 2014 if the legislation is ruled to be constitutional.

This remains a confusing area and parents are urged to get help when exploring their insurance options. An increasing number of organizations that provide intensive behavioral therapies in-state have acquired experience working with parents and their insurers. In addition there are both law firms and private health insurance advocates who will work to help obtain services.

There is no question that these therapies contribute to more successful outcomes. Were the short-term costs not more important to mostly for-profit private insurance companies, versus the long term gains to society, more services would be available and covered. Our insurance system continues to leave large segments of the population without help.

Next: Information about schooling.

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.