A Life Apart: Parent Perspective on Living with a Child with Asperger’s

LESSON TWO: Getting a Diagnosis and Understanding Different Diagnostic Terms

OBJECTIVE: Explain what different terminology can be used for autism disorder
READINGS: Time Magazine –issue of May 6, 2002 for a comparison of the diagnoses in layman’s terms. (Make copies and give to family and close friends.)

Almost apologetic, the nursery school director approached me and said that she felt they could not do right by my son and he needed more specialized assistance. I will always be grateful to her for two things: She allowed us to try and she could admit when she was out of her league.

And I will always remember that day, her taking me aside in the hallway out of earshot. Was I shocked? Absolutely not. Was I scared and confused and feeling like the only mother on this planet that had such a difficult child? YES!

Before a school-conducted evaluation, our pediatrician recommended a therapist. I left baby sister with a friend – ironically, a special needs teacher. The therapist let my son play and then got down on the floor and tried to interact with him. Her conclusion came quickly: ”He has special needs.” I wondered how she could tell within minutes. Panicked, I went to my friend’s house to pick up the baby and she reassured me that having “special needs” was a “big umbrella term”. Little did I know just how big an umbrella we were going to face.

After a school-conducted evaluation, my son started at a therapeutic pre-school program, a wonderful place no longer in existence. It was there that I first heard the term “PDD”.

(It was also there that I eventually learned a valuable lesson: It’s the equivalent of “Don’t judge a book by its cover.” Don’t judge a program by its physical setting. This marvelous program with dedicated, skilled teachers was housed in a dingy, shabby building - a church annex. As much as I cried when I saw it for the first time, I cried ten times more when he had “aged out” and we had to leave.)

IS HE OR ISN’T HE? ONLY THE NEUROLOGIST KNOWS FOR SURE. (MAYBE)

“Is he autistic?” I’d ask the staff at the therapeutic pre-school.
No, “Autistic-like,” they’d answer.
I was confused. On some level I knew that autism was there. But what was this “PDD” they were talking about?
To try to pin down the answer, we went to a well-respected neurologist. After an exam that included a check in the back of his eye (that required four adults to hold him down), my son had crawled under the desk.
As we were getting ready to go out the door, the good doctor said to me: “Well, I wouldn’t worry. He’ll probably be one of those kids who go to MIT at 15.”
Was he trying to make it all better? Did he really not recognize autism? A neurologist at a respected teaching hospital? Let’s hope the professional community has changed so no one has to experience such remarks.

Think About:

Where and how was your child diagnosed?
What term was used?
Does the term make a difference? Aspergers’ v. Autism v. PDD.

At first, the term chosen by the clinician to let you know something is not right is very important. I can understand the reluctance to use the “A-word” does because autism likely strikes fear in the heart and is a major blow.

What did you know about autism before your child was diagnosed?
Do a free association. If you have started your journal, write down any images that pop into your mind. Compare them with what you know now.

I had read "The Siege” by Clara Parks when I was in high school because she was a local author and I found autism fascinating. I had also read ”Son Rise” and the book about a boy named Noah. So in my mind, people with autism were mostly nonverbal and unreachable. And that, I think, is the image most of us have before we come to understand that a very small percentage of children on the spectrum of this disorder fit the description of “classic autism”.
However, the term “PDD” is so meaningless and nonspecific. It left me blank and uninformed. And worst of all - isolated. There was no ”Support Group for PDD”. Asperger’s Syndrome was never mentioned. I think no one had heard of it. As recently as a few years ago, my own pediatrician had never heard of Asperger’s Syndrome.

Assignment: If you would like more information...

Go to a medical library and read the definitions of “Asperger’s Syndrome” and “PDD” and ”Autistic Spectrum Disorder” in the ”Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision: DSM-IV-TR, by the American Psychiatric Association, 943 pp., paper, $49.95, ISBN 0-89042-025-4, Washington, DC, American Psychiatric Association, 2000

Note: That the “Diagnostic and Statistical Manual” is periodically revised. This is the most recent version.

A joint effort by YALE UNIVERSITY and the Learning Disabilities Association, the Social Learning Disabilities Project is a comprehensive study that is trying to pinpoint the various diagnoses along the autism spectrum. Visit their website. http://info.med.yale.edu/chldstdy/autism/

Now that I think about it, even if the neurologist knew that something was wrong and that my son had autism or a related disorder, the doctor and the therapeutic pre-school did me a disservice by failing to accurately label my son. Labels really only belong inside clothes (unless you have a child with sensory issues and you’ll be cutting out all the labels from clothes!).

After three days participating in the above-noted Yale study, we sat down with one of the principal researchers. So, hanging on to the edge of my chair, I wanted to know what were the results of test after test and multiple observations? The answer came down: no, he does not have Asperger’s Syndrome; he has “PDD-NOS”. “PDD Not Otherwise Specified.” More vagueness. In frustration and for my own inner peace, I have left the terminology behind me and focus on the fact that my son is somewhere on the autism spectrum.

But way back, when my son was three or four, in not giving us the “autism” word, whether by good intention or ignorance, clinicians prevented us from getting support. Who had ever heard of PDD? Could he be the only one with this vague-sounding diagnosis? There was no “PDD support group”. No one said: “Call the Autism Society of America and find out where there is a chapter near you.” (www.autism-society.org)

Think About:

What kind of initial support did you seek out?
What would you recommend for parents?
How do you refer to your child when mentioning his special needs to others?
Or to him?
Do you say ”autism” or “Aspergers?”
Are there any advantages to either?

My feeling is that Asperger’s is becoming more widely known but I worry that like “ADD” of the late 1970s and 1980s, it becomes another “diagnosis du jour” and may be too widely applied. Personally, for the purpose of acquiring services, I say "autism spectrum.”

Someone, somewhere, though, has been using the term “Asperger’s” with my son because recently, when he was frustrated with my repetition of a question, he yelled: ”I take more time to answer because I have Asperger’s”

Do not be frustrated if one consultant or other professional uses “PDD-NOS”; another uses “autism spectrum” or “Asperger’s Syndrome”. Because it is a spectrum disorder, somewhere to the left (?) or “right’ (?) of “normal”, the diagnosis may vary from clinician to clinician.

DOES IT REALLY MATTER?

Think of what your goal is and use the diagnostic term that will buy you the most services or understanding, depending on the situation.

To obtain school services, you might use one diagnosis. To enroll your child in a mainstreamed gymnastics class or an inclusive day camp, another. To a close friend versus a casual acquaintance, another.

“A” words seem to be part of our family. My son is “adopted” and he has “autism” or maybe “Asperger’s Syndrome”. We are used to “A words”, the kinds of terms that usually are uttered in hushed tones, as if there were something dreadful to hide. We have only used “autism” when we talk to him about his disability. It is hard to remember when we first provided the term. It’s kind of similar to our use of “adoption” or “adopted”; it just flowed. We said it matter of factly. This is what it is.

Some might argue that providing a less-known term like “Asperger’s Syndrome” is an opportunity to educate the public. I would agree and say that my use of “autism” in public also serves to provide insight to the uninitiated and let them see that autism does indeed have many faces. Autism is not only the nonverbal, flapping, head-banging, unreachable child portrayed in the media of the1960s and 1970s.