Asperger's

I’ve recently been in touch with a mom who has a son with Asperger’s Syndrome.  It isn’t called that now, I know, but it’s the one I’m most familiar with and first heard in the 1990s.  This mom thinks that she’s got Aspie characteristics herself and is trying to decide whether or not she wants a diagnosis.  She believes she will feel even more stigmatized and isolated than she already does if it's so.

When my eldest was about 7 and in second grade, some issues came up and Rich and I sought out a therapist for him.  We found someone we liked and she began sessions with our son.  After a couple of them, she took me aside and asked if I’d ever heard of Asperger’s Syndrome.  I hadn’t.  She explained what it was and then said she thought my son had those characteristics.

My blood went cold.  Autism?  My brilliant baby boy?  Surely not.  He was very highly verbal and creative in his thinking.  He had lots of neighborhood and class friends.  Yet.  His voice had an atonal quality to it, often sounding flat.  No inflection.  When he played with his Match Box cars, he would lie on the floor on his side and line them up.  He didn’t have the cars crash or speak.  He’d lie quietly and move all the cars up, then back.  Up, then back.  I look back now and wonder how I didn’t see it.

The therapist also said he had ADHD, the type with constant motion.  That was something we understood a bit better.  We met with school administrators and their psychologist got involved to see if my son needed an IEP.  The answer: no.  My son, they felt, needed to be in the gifted and talented program and the IQ they felt he had meant no IEP.  They did, however, give him a 504 plan because he also had dysgraphia.

As he grew older, I noted my son becoming more reclusive.  I found out he was ostracized at school beginning with middle school.  I discussed it with the school counselor who implied that it seemed to be my son’s fault.  His response to being bullied was to humiliate those kids during class, correcting them grammatically and when they got their facts wrong.  He never complained about being bullied.  In fact, he seemed to be cool, calm and collected about everything.

Even when Rich passed away, my son was emotional only that day.  After that, when I asked him how he was coping, he would answer matter-of-factly, “Dad is dead.  That’s not going to change and there’s nothing I can do about it.”  A grief therapist told me that she couldn’t help my son because he wouldn’t or couldn’t open up about his feelings.

As I learned more and more about Asperger’s, I realized that Rich had similar characteristics.  He was so shy and very uncomfortable in social situations.  He avoided them whenever he could.  He was highly imaginative and creative, with an amazing memory for facts and bits of trivia.  I read that autism can run in families.  Yes, I could see it.

My middle child, my older daughter, had difficulty with change right from the get-go.  She was very sensitive to noise.  She was 3 years old, riding her trike one afternoon, when our neighbor pulled up in her car.  My daughter called, “Please turn off the car, Miz Alice.  It’s too noisy!”  We laughed about it then but it wasn’t so funny when school started.

From first grade throughout her school years, she didn’t want to go.  She would cry and tantrum.  She’d say she was sick and wanted to stay home.   During the elementary years, we were in walking distance of the school.  We’d come onto school property and she’d stop, just like a donkey or mule you’d see in cartoons or comedies.  We had to do something to help her and we turned to my son’s therapist.  My daughter began to see her too and actually was prescribed liquid Prozac by the agency’s psychiatrist.  They felt she had a generalized anxiety disorder and depression.  The medication helped a little.

As she entered her teen years, though, she began to have explosive anger outbursts.  She didn’t like change, she didn’t like crowds, she didn’t like noise.  She didn’t want to take medication.  She said it killed her creativity.  She was devastated when her father died and was inconsolable.  She was so stressed, she came down with mononucleosis.  A new therapist thought she might be bipolar and prescribed medications for her but it was hard getting her to take them.

After I remarried Ted, I realized I had a lot of my own issues that needed to be handled again.  I told my therapist about my kids and she said, “Hmm.  It sounds like your daughter may have Asperger’s too.”  The agency psychiatrist there interviewed my daughter and came to me afterwards and said yes, she had Asperger’s too.

Neither of my kids wanted to seek out services that might have been available to them.  They didn’t want to be labelled.  Both of them have long since graduated and are managing very well.  My youngest child does not have Asperger’s.

There was an online personality quiz once and I took it out of curiosity.  It turns out I have Asperger characteristics too.  I thought about it.  I am introverted and feel socially uncomfortable around people I don’t know well.  I get claustrophobic in crowds so I stay on the periphery of a group, even if it’s family.  I seek out places to soothe myself when I get overwhelmed at a gathering. 

Like my daughter, I didn’t want to go to school although I did very well in my classes.  I did the same thing she did: fought going and would claim to be sick to my stomach.  My parents would have to forcibly drag me to the car and put me in it to take me to school.  That was the dreadful year I was ostracized and bullied for being different.

Interesting.

Anyway, the bottom line is there’s no stigma to autism or deafness or any other physical or emotional difference from “the norm”.  The answer is exposure and education.  If people understood about all our differences, I believe they wouldn’t be so afraid and hateful.  I’m very glad there’s an Autism Awareness month and a Deaf Awareness month and all the rest of them.  It would make living together so much more tolerable if we were all more accepting of our differences.

 

Ursula Beluggi

I wanted to write a little bit about a woman I’d never heard of, Ursula Bellugi.  She just passed away at the age of 91.  What drew my immediate attention was an article in the https://www.nytimes.com/2022/04/22/science/ursula-bellugi-dead.html New York Times, which focused on her life’s work.  She was a pioneer in proving that American Sign Language is a real language and not a short-cut version of English.

Dr. William Stokoe, a professor at then Gallaudet College, said he believed that sign language was itself a language separate from English in 1960.  At that time, he was ridiculed.  People believed that sign language was all just pantomime, mimicking spoken English.

Dr. Bellugi was a researcher at the Salk Institute and the director of the behavioral neuroscience department.  She worked closely with her husband, Dr. Edward Klima,  on how language develops in the brain, both spoken and signed.  Dr. Bellugi found that American Sign Language, with all its vocabulary, syntax and grammar, is passed from generation to generation of Deaf people.

The left side of the brain is predisposed to language development, both spoken and signed.  That’s true for all the different sign languages in the world as well as spoken foreign languages.  The brain doesn’t discriminate between signed or spoken languages; they are the same.

Dr. Bellugi’s and Dr. Klima’s findings helped people accept sign language.  Here in the U.S., American Sign Language is taught as a foreign language in many schools.  Not too many years ago, it was officially recognized in the United States as a legitimate foreign language.

There was a movement in the 1980s called Deaf President Now.  Until then, educators of the Deaf were hearing.  Hearing educators decided how Deaf students would be taught.  For many years, the restrictive oral method was prevalent.  Deaf students were encouraged to use their voices and to lipread.  Families and the students were discouraged from using any form of signing.

The previous presidents of Gallaudet College were also hearing.  The current president was leaving and candidates were interviewed for the position.  Some were hearing; some deaf.  To the anger and frustration of the Deaf students, a hearing woman was selected to be the next president.  The students revolted.  They wouldn’t go to class.  They gathered in protest, feeling that they were being slighted.  A Deaf person was perfectly capable of understanding the needs of Deaf students, they believed.

As the news spread around the country via television, radio and newspapers, many hearing people supported the students.  Deaf communities joined in the protests.  Deaf people can do anything but hear.  Why not give Deaf people the opportunity to make decisions on their education and other issues?

Eventually, the hearing woman withdrew her application.  Bowing to all the pressure and publicity, I. King Jordan was selected to be the next president.  Jordan was deaf, and the students and communities were wild with joy.

Now, after all those years, we finally had a movie showing Deaf people not as helpless victims but as hard working, successful adults.  The movie was Coda.  Hopefully there will be more “normalization” of Deaf World.

This started out to acknowledge Dr. Bellugi and to say I’m grateful for her research.  She also made significant contributions in understanding Williams syndrome and in the development of language in children.  She was an amazing woman and I wish I’d heard of her long before now.