Tag Archives: Child

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: 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: 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.

Autism Q & A: What causes autism?

What causes autism? We don’t know. If parents search for the answer (usually online) they are likely to come across individuals who are absolutely sure they know.

I would urge every parent to walk away from “easy answers.” The “treatments” these individuals propose range from ridiculously easy (take these vitamins or supplements and your child will be better/cured?) to ridiculously expensive (hyperbaric oxygen therapy or stem-cell injections). Instead, look for help through highly reputable resources with real science behind them. This subject is highly controversial and one person’s passionate statements (though strongly felt) cannot replace science.

There are a number of recognized medical conditions that are known to be associated with autism, including a condition called tuberous sclerosis and one called Fragile-X syndrome. Up to 10 percent of children with autism will have an identifiable genetic condition, though this number is likely to grow to as high as 40 percent with expected gains in knowledge and technology. Therefore, 90 percent of what we identify as autism today does not appear to have a well-established cause.

In most cases there is probably not a single cause. The prevailing scientific view is that autism is a polygenic or multifactorial genetic disorder. It is likely caused by the interactions of genes with genes, and/or genes with the environment and there may be different explanations for different individuals. No wonder scientists are beginning to refer to “the autisms.

Next: Is autism genetic?

Daniel B. Kessler, M.D.

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 autism and when should you worry?

This article has been permanently relocated to Raising Arizona Kids magazine’s website: http://www.raisingarizonakids.com/2012/04/what-is-autism-and-when-should-you-worry/

Managing meltdowns: Helping your child cope with tantrums

By Lorenzo Azzi, Ph.D. 

We’ve all witnessed a child (sometimes our own) in full meltdown mode, as well as the tantrum that inevitably accompanies it. It can happen anywhere — like the grocery store checkout line — at any time. All you really want to do is quickly end the fit so your child calms down.

As a clinical psychologist specializing in infant and toddler social emotional development, I hear firsthand from parents puzzled as to how to respond to tantrums — especially given how much misinformation there is about why children throw fits.

What is a tantrum?

There is a huge misconception that tantrums are your toddler’s attempt to manipulate you into getting what he or she wants. While this might be true in a very small number of cases, I can assure you that developmentally, your toddler isn’t cognitively sophisticated enough to intentionally manipulate you.

A tantrum is really the behavioral manifestation of your child’s emotional response or feelings. That feeling might be genuinely sad, confused, angry or scared and he’s crying and throwing a fit because the intensity of that feeling overwhelms his still unsophisticated capacity to cope with big feelings.

Over time, children develop the capacity to regulate their emotions and we as parents can help teach children how to regulate emotions in a positive way. Believe it or not, tantrums are a perfect opportunity to foster this learning process with your child.

What should you do when your child is having a tantrum?

When you have the mindset that your toddler is doing this to manipulate you, this likely leads to anger and to punitive measures like spanking, ignoring or taking something away; none of which are helpful to your child or teaches appropriate ways of managing “big feelings.”

Instead, if your toddler has a feeling that he doesn’t know how to deal with on his own, start by trying to understand what feeling he is experiencing and help him to regulate that negative feeling using the following steps:

Step 1: Be empathetic and calm

Show empathy and calmly demonstrate that you know how your child feels. Say, “I can see you are really sad right now,” or “That made you really angry when your sister knocked down your tower of blocks.”

As you are voicing empathy, just sit with your toddler. Hold him, gently rock him or rub his back and just sit with him in a calm, reassuring way.

Step 2: Practice self-calming skills

When you can tell your toddler is starting to calm down and has regained some control, THEN you can help teach him how to deal with his emotions. Try telling him, “When we get upset we can breathe in together” or “Let’s count to 10 together.”

Using the example of his sister knocking over his blocks, calmly explain to him, “I can tell that made you really upset. One thing we can do when that happens next time is build a different one, or build it again.”

Also, give him some words to use to express himself such as; “You didn’t like it when she knocked your tower down.”

When a child has the repeated experience of a parent or caregiver being able to sit with them and calm them when they have a negative emotion, they learn very quickly, even at a very young age, that they can recover from feeling bad and this important person can help them achieve this. Toddlers who have internalized this feeling often experience fewer and much shorter tantrums.

In fact, if you consistently practice these steps with your child, they will quickly learn to practice self-calming skills and can deal with their emotions in a positive way.

From toddler to teen

As an added benefit, helping your toddler cope with tantrums at a young age can have a far-reaching impact on your relationship with your child, even into their teenage years.

Case in point: If you ignore your child when he throws a tantrum, or you send him to his room, the message you send is that “when you have a problem I can’t be with you and can’t tolerate you; you need to be on your own.”

Conversely, if you practice the steps above, your child’s brain becomes hardwired that you are the person they can come to when they are having a problem, and that you will be calm and sensitive — no matter what their age or problem.

Lorenzo Azzi, Ph.D. is a clinical psychologist specializing in infant and toddler social emotional development at Southwest Human Development, where he provides consultation to families via the Nurse Family Partnership program, Early Head Start program and the Good Fit Counseling Center — Arizona’s only mental health center for young children. He also serves as faculty for the prestigious Harris Infant and Early Childhood Mental Health Training Program.