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Don’t Get Locked into Labels!

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by Temple Grandin, PhD
Autism Asperger’s Digest
| November/December 2012

“How Can I Help My Child?”
When I get asked questions about how to help a child with autism spectrum disorder (ASD), the questions are often so general that they are too complicated to answer. It is impossible to answer a question such as “How do I help my child?” or “What can I do about my son’s behavior issues in the classroom?” Even if a mother were to tell me her child’s diagnosis, along with a question like those above, I would still need more background information.
In order to give a helpful answer, I need to have additional information such as the child’s age. If the child is 3 years old, I would recommend 20 or more hours of weekly one-on-one teaching with an effective teacher. This teacher would use strategies to bring about improvements, such as more speech, better eye contact, or other desirable behaviors like turn taking. If the child is 12 years old, I would need different types of information before I could give any recommendations. I would need to know about the child’s language skills, level of ability to do schoolwork, and behavior problems (e.g., meltdowns).
I would ask the same questions regardless of the diagnostic label. Parents ask me all the time how pervasive developmental disorder–not otherwise specified (PDD-NOS) differs from autism. There may be some differences, but the educational strategies are the same.

Look at Symptoms—Not the Label
The problem with the diagnostic system for ASD is that it is an odd combination of labels used as an umbrella term. Parents and teachers need to identify the challenges the child is experiencing without getting hung up on his diagnostic label. What exactly are the child’s problems? Be specific: some examples are meltdowns, difficulty with independence skills (e.g., dressing self), not understanding math concepts, and sensory overresponsivity.
A teacher or a parent who is working with a child must have strategies for dealing with specific issues instead of the umbrella term autism spectrum disorder. For example, in my case, many meltdowns and temper tantrums were prevented because I knew that the penalty was no TV for one night. That worked for me, but it may not work for another child who has less ability to make long-term associations.
In the proposed Diagnostic and Statistical Manual of Mental Disorders (DSM-5) scheduled for publication in May 2013 (American Psychiatric Association), Autism Spectrum Disorder has two core symptoms: social communication issues and fixated interests/repetitive behavior. This would make ASD an umbrella term that covers several different type of symptoms. Asperger’s Syndrome (AS) will be removed and replaced by Social Communication Disorder (SCD). Basically, SCD is ASD without restricted, repetitive behavior or fixated interests.

Physical Evidence of My ASD Symptoms
Since 1988, I have been in many brain scan studies. A basic thing I have learned from this is that findings from these brain scans clearly explain symptoms that teachers, therapists, and my parents easily observed. Some of the findings are the following:

  • Undersized cerebellum explains balance problems and clumsiness.
  • Enlarged amygdala explains anxiety and panic attacks that are now controlled with antidepressant medication. (Not all people with autism have an enlarged amygdala.)
  • Overgrown visual circuits may be the basis of my visual thinking.
  • Abnormal speech output circuits would explain why I have difficulty getting my speech out (expressive language). Another child may be echolalic and be able to clearly recite the words from his favorite video but not know what the words mean.

 

The types of scans done on me are not available in hospitals and were all done in top research labs. Some of the scans were done by Walter Schneider at the University of Pittsburgh on the most advanced scanner in the world. Other scans were done at the University of Utah by Jason Cooperrider.
The take-home message is that brain scans explain symptoms that parents, teachers, and therapists can readily recognize. You need to be a good observer and describe what you see to professionals, who can then help you plan a course of action based on the symptoms from your child—not his diagnostic label.

Don’t assume that what one child with ASD needs to succeed is what your child needs also. Some issues in children with ASD may never present in another child with the same diagnostic label. Start with what you know about your child as an individual. Then seek help from professionals such as educators, therapists, doctors, and psychologists. If you ask the right questions (with appropriate background information), you can get the right answers that will help your child succeed in life!

Reference
American Psychiatric Association. Forthcoming. Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Arlington, VA: American Psychiatric Association.

 

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.


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