Diagnosis Title

These questions that "Parents May Ask" were excerpted from a valuable book for families "Healthcare for Children on the Autism Spectrum." Written by Dr. Fred Volkmar and Dr. Lisa Wiesner, this reference provides some of the common healthcare challenges that families may face as a child grows up with autism. Dr. Volkmar is the director of autism research at Yale and Dr. Wiesner is a pediatrician in private practice.

Question: A friend told me that all children with autism eventually have seizures. Is this true?

Answer: No, about 25 percent or so of children with autism develop seizures. Children with Rett’s disorder and CDD also have an increased chance of developing seizures. Seizures are less common in Asperger’s disorder and PDD-NOS. For children with autism, there is an increased risk of developing seizures throughout childhood and adolexence – even into young adulthood. Even if your child has an EEG that was normal at one point, he may still, unfortunately, develop seizures later. But clearly, most children with autism don’t develop seizures.

Question: My child has been diagnosed with PDD-NOS but the school has given her the label of autism. Is this OK?

Answer: Labels used by schools often differ somewhat from those used by medical professionals. These labels also vary considerably from state to state and sometimes within states! Often for purposes of getting appropriate services, the label of autism is used very broadly, so in this case it may be perfectly fine for your child. Keep in mind that you need to evaluate labeling issues in the context of your child’s particular needs and that you can always ask to discuss the label and change or drop it.

Question: My three year-old son has just been diagnosed with autism. Does he need medications now to help with his behavior? Will he ever need medication?

Answer: In general, we try not give medications to very young children because behavioral interventions have more potential payoffs and fewer side effects. By the time children are entering school (and sometimes sooner) medications can help deal with specific symptoms and problem behaviors – but they still don’t substitute for a good behavioral and educational program. In terms of whether your son will ever need medication, it is hard to know. Many children do not, others do. The reasons why children would need medications vary a lot. Part of what you should consider as well is how disruptive the behavior is for you and your other children. Some parents are willing to try medications that may help with certain behaviors, whereas other parents feel that they or their child can learn to live with the behaviors.

Question: My child gets very involved in visual stimulation at school. This seems to happen in one classroom in particular. He will look at his fingers and flick them back and forth. Sometimes he looks at things out of the corner of his eye. What can I do about this?

Answer: Self-stimulatory behaviors are very common in autism. The kind of behavior yo describe is not unusual except for the fact that it seems to happen in one classroom. You might take a look at the classroom. See if it is (from your child’s perspective) visually overstimulating. Sometimes classrooms with a lot of visual activity seem to overwhelm children with autism. We’ve walked into classrooms where there were things dangling from the ceiling and spinning around as well as lots of activity outside the classroom windows. Sometimes there are visual stimuli that no one else realizes are there (in one classroom, a spinning phonograph record was reflecting light in rainbows on the ceiling).

Question: My school wants to treat my child as if her primary disability is mental retardation, not autism. Is that OK?

Answer: In the best of all possible worlds (of which this is not one) we should be providing educational programming to children and not to labels. That being said, the problem in the real world is that the label of mental retardation (and not autism) tends to imply the need for a general intervention – for example, with many opportunities for learning, stimulating environments, and so forth. For a child with autism who also has mental retardation, it is generally better to go with the autism label since this label implies the need for special services. One of the problems with general stimulation programs and classrooms designed for children with MR is that they may be overstimulating for the child with autism and also often lack the intensive focus on behavior and communication that is needed. On the other hand, for some children with autism, particularly in adolescence, the difference can be less important. For example, in both conditions a lot of work has to be done on “real world” or adaptive skills. Talk with a parent advocate or an outside consultant about how best to work with your school on this issue with regard to your child’s specific needs.

Question: Our fourteen year-old son has made some nice gains in his cognitive communication skills, but has a lot of trouble with self care. His father still needs to get him into the shower. Is there some way we can work on his self-care skills?

Answer: Absolutely. You might want to talk with the school psychologist to get an assessment of current levels of self-care (adaptive) skills. There are several very good tests that can be used to do this, and, in conjunction with any cognitive or IQ testing already done, the psychologist may be able to generate for you a list of reasonable goals. The issue here is to pitch things at the right level for your child, keeping in mind that it is better to start a little slower and with things that are easier and then build on success as you move along. An experienced teacher or person who works with developmentally disabled children may also be a help. Sometimes it works well to have someone other than the parents involved. For example, one young man we know had pretty poor self-care skills but was really interested in fitting in at school. He took up swimming with the supervision of a college student who was able, fairly quickly, to get him up to speed. This activity helped him learn about getting dressed and undressed, as well as showering before and after swimming – one of the “rules of the pool.”

Question: Are there any lab tests that diagnose autism?

Answer: At present, the answer is no. When genes for autism are found, there may, in the future, be some such tests. At the moment, the only lab test that makes sense is the test for fragile X syndrome (a blood test). Other tests may be needed, given the child’s history and examination.

Question: Is a brain scan and EEG always indicated in evaluating a child with autism?

Answer: In general, the answer is no. Without a specific clinical reason to do the tests, the likelihood of finding something is small. If there are specific clinical reasons to do these tests – for example, if you suspect seizures or if the child’s history and behavior are highly unusual – then they should be done.

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First Signs

First Signs is a nonprofit organization dedicated to educating parents and physicians about the early warning signs of autism and other developmental disorders.

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Adam, Age 8