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.

Autism Q & A: What is behavioral therapy?

By Daniel B. Kessler, M.D.

Behavioral therapies are among the most commonly applied intervention methods for autism and the most studied. Many of the intensive behavioral therapies (or Early Intensive Behavioral Interventions — EIBIs) that have been studied are based on the concepts of Applied Behavioral Analysis (ABA).

Applied behavior analysis is a science that involves using modern behavioral learning theory to modify behaviors. Behavior analysts focus on the observable relationship of behavior to the environment. By functionally assessing the relationship between a targeted behavior and the environment, the methods of ABA can be used to change that behavior. Though highly effective for large numbers of children at early ages and later, ABA therapies are not for everyone. Some individuals are put off by the perception of a highly robotic intervention in a disorder characterized by difficult social interactions.

Forms of ABA are not the only tested interventions for children with autism. Other methods, such as Floortime™, are perceived to be more interactive and flexible. Floortime™ (or DIRFloortime™) is designed to both follow the child’s lead and at the same time challenge the child toward greater mastery of social, emotional, and intellectual capacities. DIRFloortime™ emphasizes the importance of the role of parents’ and other family members’ emotional relationships with the child.

Programs and providers increasingly are looking to implement blended models to obtain the benefit of multiple interventions. The Denver Model (which interweaves multiple perspectives) and the child-directed Pivotal Response Training (which blends rewards with play techniques) are examples. The Relationship Development Intervention (RDI) model developed by Dr. Steven Gutstein tends to focus on the social challenges of autistic individuals. Relationship-based models give importance to the relationships that help children reach and master early developmental milestones often missed or not mastered in children with autism spectrum disorder. Examples of these early milestones are engagement and interest in the world, intimacy with a caregiver and intentionality of action.

Often it comes down to what is available and what you can afford in a given community. There is a growing body of evidence that developmental/relationship-based approaches with very young children are showing promise and represent an important and valid treatment approach. Such is the model for the Side-by-Side Program (SxS) at Southwest Human Development, which involves parents and their toddlers. Increasingly parents are looking to train themselves and provide therapy at home.

Next: Will insurance pay for therapies?

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 benefits of early intervention?

By Daniel B. Kessler, M.D.

What is early intervention and why is it important to my child? Will my child get better?  I have characterized autism as a brain-based developmental disorder. To me, “developmental” means change or open to change over time.

Every child can benefit from early intervention. Make the call. Ask for an evaluation and not a screening. Follow up those phone calls if at first you don’t get a response. Do not wait.

Children with problems of development who are under 3 years will either be eligible for services under the Arizona Early Intervention Program (AzEIP) or the Division of Developmental Disabilities (DDD) based on somewhat different eligibility criteria. Most children who have autistic disorder should be eligible under DDD and many should also be eligible for federal matching funds under Title 19 of the Social Security Act, which is administered by Arizona Long Term Care Services (ALTCS). You should ask about all three. In addition some children may be eligible for Supplemental Security Income (SSI) from the Social Security Administration.

Who benefits from early intervention? All will benefit though all are likely to change at different rates and in response to different forms of help. Not wanting to miss anything that may help is what causes parent to search high and low for the right intervention, the right supplement or the right therapy, even if there is limited scientific support. And because in most regards earlier is better, parents are afraid not to embrace the latest “cure” posted on the Internet. But the old saying still goes, buyer beware. While many are well meaning and many believe what they are telling you about the latest cure or treatment, there are folks who will gladly take your money in exchange for little more than false hope.

We cannot predict who will benefit the most from intervention and we don’t know how much any individual will benefit without waiting and observing and sometimes changing what we do. But early intervention works! While I personally don’t put stock in curing autism I have seen remarkable recovery. It exists. And I see improvement in everyone. But what works for your child may not work for your friend’s child. Education works. Speech therapy and occupational therapy work (especially sensory integration therapy when indicated) and music therapy also can be enormously helpful for many children on the spectrum.

Next: What is behavioral therapy and why would you want it for your 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.

Autism Q & A: What specialists should my child see?

By Daniel B. Kessler

What specialists should a child with autism see? This is another controversial area, so again what follows are my opinions and my recommendations. You should always seek out the advice of your own physician.

Geneticists (genetic or inheritable disorders): Of the 10 percent of children who may have an identifiable genetic condition, half should be identified by a good physical examination by a trained geneticist and now-standard genetic testing. The other half may require more specialized molecular chromosome studies. There are always going to be improvements in our ability to diagnose, but for the majority of children with autism we will not find a cause.

Neurologists(brains and nervous system): Neurologists are sometimes called upon to diagnose autism. However, in state regulation only a licensed psychologist, psychiatrist or (with appropriate review by the Medical Director of DDD) a developmental pediatrician can diagnose autism.  This probably needs to be rethought as it has little to do with what is usual clinical practice. Pediatricians with special training should be allowed to do this as well.

Roughly 30 percent of children with autism will have a seizure disorder. These children should see an epilepsy specialist.

Gastroenterologists (mouth and stomach to anus): There is a difference of opinion as to whether there is a specific “autistic gastroenteropathy” or that kids with autism will get some of the same gastrointestinal disorders as other kids get but have a harder time getting diagnosed. Kids with autism can have significant and impairing stomach disorders and should see a specialist, if possible. When kids cannot communicate their pain it is a challenge to identify that something is wrong. That job often falls onto the parents. Should all kids see a GI doctor? I don’t think so.

Allergists/Immunologists (sensitivity to environmental factors such as allergies and infections): Allergy and immune disorders are two controversial areas in autism. There continue to be challenges on how to properly assess them. Personally I am cynical about the several specialty labs around the country that specialize in exotic assays of immune factors and heavy metals or even neurotransmitters in the blood or urine, having gotten back different results and recommendations from the same sample sent to different labs.

Some kids who have positive laboratory findings to a particular protein (plant or animal) or substance may not show clinical symptoms when exposed to that substance. Some kids will test negative to something but are highly sensitive to it in the environment and consistently and repeatedly show clinical or behavioral symptoms when exposed to it. Sometimes the only way to sort out what is real is to do carefully controlled elimination diets and that isn’t always easy.

Next: The role of early intervention.

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.