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Do Not Get Trapped by Labels

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Do Not Get Trapped By Labels

By Temple Grandin, PhD
Autism Asperger’s Digest  May/June 2014

One of the big problems with an autism (ASD) diagnosis is that it has now been changed to a broad spectrum with a wide-ranging degree of abilities.

An autism diagnosis is not precise like a diagnosis for tuberculosis. I can get a lab test for diseases such as cancer that is very definitive. This is not true for autism. A diagnosis for autism is a behavioral profile based on a manual published by the American Psychiatric Association called the DSM (Diagnostic and Statistical Manual of Mental Disorders). The behavioral profiles in this manual are based on a combination of scientific studies and the opinion of a panel of expert doctors who debated in a conference room. When Richard Panek and I (2013) worked on our book titled The Autistic Brain, we reviewed the entire history of the DSM. Since the 1950s and 1960s, the diagnostic criteria for autism have changed dramatically. When all the changes made during the last sixty years are looked at side-by-side, it is rather shocking.

In 1980, a child had to have both speech delay and autistic behaviors to be diagnosed with autism. In 1994, Asperger’s Syndrome was added where the child is socially awkward with no speech delay. In the new 2013 DSM-5 (American Psychiatric Association), Asperger’s Syndrome (AS) and PDD-NOS (Pervasive Developmental Disorder—Not otherwise specified) were removed. These labels are now all merged into a broad autism spectrum disorder (ASD). There is no longer any requirement for speech delay. Taking out speech delay makes the DSM-5 more vague than the old DSM-IV. Some scientists do not consider language delay as a core symptom of autism because language delays and speech abnormalities are so variable.

For a person to be labeled with ASD, the DSM-5 requires that symptoms must be present in early childhood, but the age of onset is no longer defined. The DSM-5 whittles symptoms down to social and behavioral. The main emphasis is on social abnormalities inherent in the disorder such as deficits in social interaction, reciprocal communication, and developing and keeping relationships with friends. In addition, the child must have two out of four of the following: repetitive behavior, adherence to routines, fixated interests, or sensory problems. Studies have shown that 91 percent of individuals with an AS or PDD-NOS diagnosis will still qualify for an ASD, DSM-5 diagnosis. The DSM-5 also created a new social communication diagnosis, which is basically the social problems of ASD without the repetitive behavior, fixated interests, or sensory problems. To state that this is not autism does not make much sense because social deficits are a core autism symptom.

Autism Is a Huge Spectrum
One of the big problems with autism (ASD) diagnosis is that it has now been changed to a broad spectrum with a wide-ranging degree of abilities. When children are really little, age 2 to 5, most experts agree that many early educational treatments greatly improve prognosis. When I was three, I had no speech and all the typical autistic symptoms. ABA-type (Applied Behavior Analysis) speech therapy and turn-taking games made it possible for me to be enrolled in a regular kindergarten at age five. Rebecca Grzadzinski, Marisela Huerta, and Catherine Lord (2013) stated, “In terms of cognitive functioning, individuals with ASD display a wide range of abilities from severe intellectual disability (ID) to superior intelligence.” Individuals with ASD range from computer scientists at Silicon Valley to individuals who will never live independently and who may not be able to participate in activities such as a shopping trip or a sports event. When such a broad range of abilities is lumped together, it is difficult for special education teachers to shift gears between the different levels of abilities. Too often a child with superior abilities is placed in a classroom with more severely impaired students. This may hold this student back and not enable him to achieve.

You Should Bust Out of the Label Silos
Each diagnostic label has its own support group meetings and books. Unfortunately, each group may stay in its own silo and there may be little communication between them. I have observed that the books for each diagnosis are almost all particular to that diagnosis. In many cases, there are kids who fit in more than one diagnosis. There are four diagnostic labels that get mixed up all the time. They are ASD, sensory processing disorder (SPD), ADHD (attention-deficit/hyperactivity disorder), and gifted. The DSM-5 now allows a dual diagnosis of ASD and ADHD. Some of these kids may be gifted in one academic subject and have a severe disability in another. Sometimes a child is labeled twice exceptional or 2E and he may be both gifted and have either an ASD, ADHD, or SPD diagnosis. When the same type of students get put in different silos, they often go down different paths. My observations at conferences indicate that about half the children who are brought to an autism conference are gifted in at least one area such as math, reading, or art. In later chapters, I will discuss the need for developing their strengths. When I attend a gifted education conference, I see the same little geeky kids going down a different, very positive path toward a career in science or art. I want to make it very clear: geek, nerd, and mild ASD are the same thing. There is a point where being socially awkward is just part of normal human variation.

I have also given talks at many high-tech companies, and it is likely that almost half the people who work there have mild ASD. One executive at a tech company told me that he knows they have many employees with AS or mild ASD, but they don’t talk about it. Many people in successful technical careers hate the ASD or AS label because they feel that it implies that they are damaged. They avoid the labels. Recently I read about a young man who had a severe speech delay, and he was “apprenticed” into his father’s physic lab. He had several scientific papers published before he was 20. If he had been born into a different situation, he may have taken a different path as an individual with ASD.

Labels Required for School or Medical Services
Schools and insurance companies require diagnostic labels in order to get services. Unfortunately, I am seeing too many smart kids labeled ASD getting fixated on their autism. I think it would be healthier for the child to be fixated on art, writing, science, or some other special interest. Too many kids are becoming their label. When I was a student, I went to school with lots of socially awkward, geeky individuals. The old DSM-IV manual would have labeled these students as having AS because they had no speech delay. Today many of my old classmates would have been labeled ASD.

Both high functioning and more severe ASD often look the same in nonverbal or speech-delayed children under age five. When children labeled ASD get older, they may diverge into two basic groups who need very different services. This highly divergent group is all assigned the same ASD label, and in poorly run programs, they are all given the same services. One group will continue to have a severe handicap with either no speech or partial speech, and the other group will become fully verbal and capable of independent living and a successful career if they receive the right interventions. They usually are able to do normal or above average schoolwork in at least one subject such as reading or math. There is a third subgroup in the nonverbal group who appear to be low functioning. Examples of this type are Tito Mukhopadhyay and Naoki Higashida who can type independently and have a good brain that is “locked in.” From both an educational and functional standpoint, ASD becomes three very different things in older children and adults. This may explain why there is so much controversy and differences of opinion in the autism community.

I am also concerned about children who should have an ASD label getting labeled oppositional defiant disorder (ODD) or Disruptive Mood Dysregulation Disorder (DMDD). In DMDD, the symptom is frequent temper tantrums in a child older than six. The ODD label can be used on children of all ages. Its main symptoms are active defiance, vindictiveness, and sustained anger. Children who get these labels need to have firm limits placed on behavior and be given choices. For example, the choice could be doing homework before dinner or doing it after dinner. Choices help prevent the oppositional child from just saying, “No.”

In conclusion, parents and teachers must bust out of the ASD silo. DSM labels are not precise; they are behavioral profiles. Unfortunately, our system requires labels to get services. Remember to think about the specific services a child needs such as tutoring in reading, or social skills training for an older child, or an intensive, early educational program for a nonverbal three-year-old.

BIO
Temple Grandin, PhD, is an internationally respected specialist in designing livestock handling systems. She is the most noted highly functioning person with autism in the world today. For more information, visit Temple’s website at www.templegrandin.com.

References
American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Washington, DC: American Psychiatric Association.

Grandin, T., and R. Panek. 2013. The Autistic Brain: Thinking Across the Spectrum. New York: Houghton Mifflin Harcourt.

Grzadzinski, R., M. Huerta, and C. Lord. 2013. “DSM-5 and Autism Spectrum Disorders (ASDs): An Opportunity for Identifying Subgroups.” Molecular Autism 4:12–13. doi: 10.1186/2040-2392-4-12

Resources
Barnett, K. 2013. The Spark: A Mother’s Story of Nurturing, Genius, and Autism. New York: Random House.

Hazen, E., C. McDougle, and F. Volkmar. 2013. “Changes in the Diagnostic Criteria for Autism in DSM-5 Controversies and Concerns.” The Journal of Clinical Psychiatry 74:739. doi: 10.4088/JCP.13ac08550

Higashida, N., and D. Mitchell. 2013. The Reason I Jump: The Inner Voice of  a Thirteen-Year-Old Boy with Autism. New York: Random House.

Lohr, W., and P. Tanguay. 2013. DSM-5 and Proposed Changes to the Diagnosis of Autism.” Pediatric Annals 42:161–166.

Mukhopadhyay, T. 2008. How Can I Talk If My Lips Don’t Move: Inside My Autistic Mind. New York: Arcade Publishing.

Tanguay, P. 2011. “Autism in DSM-5.The American Journal of Psychiatry 168 (11):1142–1144. doi:10.1176/appi.ajp.2011.11071024

 

Copyright © Autism Asperger’s Digest. 2014. All Rights Reserved. Any distribution, print or electronic, prohibited without permission of author.


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Comments

  1. Marge Blanc says:

    As always, a voice of reason! Thank you, Dr. Grandin, for your astute review of the changes to the DSM, and for being a friend with whom we can commiserate! Your advice to not get trapped by the ever-changing wave of labels is highly relevant in this sea of change! As you advise, we must, more than ever, “bust out of the ASD silo” and think about each child, as the individual each person is!

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