More on Autism – Words and More Words

As I’ve shared with you before, there are many different types of Autism and many degrees of severity of each type.  (This is why medical communities refer to it as the Autism Spectrum.)

There’s a certain type wherein children might start speaking up until about two years old, and then they suddenly stop and never speak another word.  However, just because they cannot speak doesn’t mean that they’re unintelligent or stunted mentally, or unable to understand what’s going on around them.  One such young woman named Carly Fleishmann actually wrote a book about her own autism called Carly’s Voice.  The first time I ever heard about her, it gave me goosebumps.  (You can find her book here: http://carlysvoice.com/)

The type of Autism that my children and I have used to be known as Asperger’s Syndrome.  (Now it’s simply called Autism Spectrum Disorder).  This is the only type of Autism that’s hereditary, and I’ve heard — and I believe — that it’s also one hundred percent genetic.  Our type of Autism is considered “high functioning,” though I feel that label is quite misleading, especially in educational circles.

One of the things that is usually unique to people with Asperger’s Syndrome is the way they process or interact with spoken words.  In fact, though my son’s doctors, teachers, and I all knew something was “wrong” with him from the time he was born, he wasn’t diagnosed until he was in the third grade.  (My daughter and I were diagnosed a short time later.)  After the diagnosis, I read tons of books on Autism and Asperger’s, and I was floored by how many of those books could have been written by or about either my son Jeremy, my daughter Stefani, or even me.  They really unlocked a lot of answers of why we did a lot of the quirky things we did.

Jeremy was diagnosed first by his pediatrician who sent us to a child psychiatrist who specializes in Autism to confirm his diagnosis.  Then he confirmed it and sent us to a world renowned developmental pediatrician who also specializes in Autism to confirm his diagnosis.

The latter two doctors both had questionnaires that were about as thick as a small town’s phonebook which asked questions that started with the grandparents’ medical history and worked down through the patient’s current life.  When the second doctor and I were talking about Jeremy and I mentioned how he had his own language for everything up until he was nearly six years old, the doctor’s eyes nearly bugged out of his head.  (In retrospect, I think he was thinking something like: If you knew that, then why are you even here?  Of course he has Asperger’s Syndrome!)

Some small children have a hard time saying certain words, and they come up with words that sound similar to the word they’re trying to say.  For instance, they might say “nana” instead of banana, or “sissy” instead of sister.  These children typically outgrow the inability to say such words by the time they’re two or three and the words are either dropped from their vocabulary and replaced with the appropriate words, or else they end up creating a new nickname for a sibling or other family member, in which case the cute substitute word sticks around.

However, in the child with Asperger’s Syndrome who does this, they don’t drop these words as easily, nor are they anything that sounds remotely like the word that they are trying to say.  (Not all people with Asperger’s Syndrome do this… Neither my daughter nor I ever did.) Usually the children who do this make up an entire language, and the parents are left to decipher what they’re talking about.

For example, are few of Jeremy’s words were as follows:

Yogurt = O-tee
Light = Gullah
Bottle = Day-bot
Jeremy = Swedish Germany
Banana Peel = naypaypurr

So, multiply this “language” times a hundred words, and imagine trying to carry on a conversation with this child and figure out what he needs.  And the difficult part is also trying to figure out if the child “speaks in this language,” then do they understand what the parents are saying when they speak appropriately.  I don’t know the answer to that.  Jeremy is nearly twenty-one years old now, and he doesn’t remember his special language that he used through almost the first grade.  (Luckily, we got some of it on video to remind him.)

Another thing that’s common to people with Asperger’s Syndrome is that from a young age, some of them may use odd or exceptionally advanced words and have a large vocabulary.  Many of them often learn to read from an exceptionally early age and without much formal training.  (This is known as hyperlexia.  Both my daughter and I fit into this category.)

These people tend to use (or rather overuse) large words that are not necessarily the most common choice for their social setting.  They are very formal and pedantic in their speech.  I personally did this until I was in my mid-twenties when my friends and family all, at some point, accused me of trying to be a “showoff.”  I didn’t understand what they were talking about because I wasn’t trying to do anything.  I was merely speaking.  And to be quite honest, I felt that because they didn’t understand the definitions of half the words I said, they probably belonged with the group of hillbillies (though at the time I called them rubes, not hillbillies) that stood in the corn field on the old TV show Hee Haw.

However, I now realize that I probably sounded like a walking thesaurus.  My birth mother used to get particularly frustrated with me and say I was “using those two dollar words again.”  I just figured she was just unhappy because she had no idea what I was talking about.  My ex-husband used to get infuriated with me and accuse me of showing off and acting stuck up.  And his friends also made similar comments.  I figured it was because they were all uneducated (which was true), and I shouldn’t have to “dummy down” my speech just to pacify them.

Now, I realize, however, that most of the world does not speak with such specificity.  Slang and colloquial speech are preferred to the pedantic, “highbrow” dialogue of the Autistic person.  So, I learned to dial it way back in order to fit in more socially, and I believe Stefani did, too.

Well, thank you for visiting my blog today.  Remember, I’ll be back on the first Sunday of next month to discuss more about what makes this Autistic person tick.  Until then, in case you don’t know it already, my theme this month is games.  I’ll be throwing a different challenge out each day to find certain similarities in various forms of media.  (Many Autistic people notice certain patterns, and I’m one of them.)

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31 thoughts on “More on Autism – Words and More Words

  1. Wow that’s quite amazing! How did you understand him? I guess school helped to convince him to swap to recognised English. Thanks for bringing us a little more understanding of the world of autism. X

      • Oh no! I’ll wait to read that post, and look forward to it. It must have been very hard to deal with when all your diagnoses were made so late on.

      • Yeah, it did make it harder, especially for my kids. They still have a hard time knowing they are “different” and they don’t like to admit it or let other people know. 🙂 I really appreciated your Carys post the other day. It really put things in perspective for me which I needed at the time. ❤

  2. thank you so much for sharing this, rachel. i love to learn and hear from a person who knows what it’s really like. i have taught asperger’s kids (and their parents – who usually clearly share the same traits), and this all helps me to better understand them and to teach them in the best way for them to learn.

  3. My brother is classically autistic and spoke until he was two, then stopped. After that, over the years, he gathered and created a language based on corporate and tv/movie logos. He’s turning 19 next week and incorporates a lot of regular language using one of those keyboard-voice things, but prefers to speak in his own language.

    From my experience though, he definitely can understand the ‘other side’ just fine, he’s also capable of reading regularly (he just doesn’t like to), I’m very proud of how far he’s come, but the speech thing is a barrier to overcome when stress is involved. We went through a lot of doctors and clinics for him, the worst parts have been seeing my brother go through medication side-effects and be unable to express himself when in pain, thus causing a fit and more pain.

    The Reason I Jump by Naoki Higashida is a great little book that offers perspective on the inner life for those on the outside to read. I enjoyed it a lot.

    It’s tricky to keep track of all the changes when it comes to labeling, I don’t know how I feel about what’s been done in creating an overall umbrella called Autism Spectrum Disorder instead of clarifying between sets like Asperger’s and autistic disorder… just because it gets confusing, fast and autism is the last thing that needs to be made more confusing.

    • Wow, that must be very challenging for all of your family. But still, it’s so promising that he shows so much promise as far as creating a language for himself that he understands. I’ll check that book out. I agree with you about the labeling. It can be very confusing. Good luck! 😀

  4. That’s fascinating about Jeremy’s language. Do you know if he was using a syntax separate from the typical English one as well? (Sorry, that’s probably a question which is impossible to answer. :-S)
    I know what you mean about how some people ostracize or look down on those who use very precise, less-common “highbrow” vocabulary. When I’d go to dance classes, I didn’t used to like to speak with anyone there (except the teacher), because every time I used a word I’d known since I was two and had been using since I was that age, I’d get asked what it meant, and though I never got bullied they would still sneer at me and though I never caught them doing it, I would get these sort of feelings that something was off. It’s strange. It’s never a conscious thought process, but I’ve been always able to guess or deduce or sort of “sense” other people’s emotions and guess what they’re thinking about. Even if they’re trying to hide it, I catch on. It’s almost as if I can catch those little moments when their expression is unguarded before they go back to looking neutral. And sometimes it’s almost invasive; I get an impression about people that I wish I hadn’t because it’s either not pleasant or because I desperately want to think well of them… I have no idea what exactly is going on, just that it happens…
    Anyway, I think the real reason why I started writing was because I didn’t feel I could be free with people outside my own family, so I turned to paper and pencil instead. It’s been extremely liberating–especially since I found the community who feels the same way I do and thinks of this sort of thing as normal.
    On the other hand, if I ever start to date someone, it would make a rather awkward first date if I were to mention that I dissect literature and examine the way it works for fun. 😛

  5. Wow Rachel, that was a long, wonderful and informative read on Asperger’s. You wrote a great piece there and really gives me a bit of insight into how it affects folks. It’s great to hear from those who really know how it is and not just hear about the stereotypical representations on movies. I have a great mentor who has Asperger’s and he has changed my life. Thank you 🙂

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