A Mind of My Own
Posted by Gail | Filed under Autism
Chapter Two — A Strong Silent Boy (Part 1)
When I found out Malcolm had Asperger’s Syndrome, I just about flipped a kidney. Man, was I scared. I wondered what I could possibly have done to make this happen. They used to call it a “disease,” but now it’s thought of more as a different way of thinking. A lot has happened in the world since Malcolm was diagnosed. Perhaps, most importantly, my whole family has learned that having Asperger’s isn’t the worst thing in the world. It’s just different.
Asperger’s Syndrome (sometimes called AS) is referred to as a form of high-functioning autism. People with Asperger’s typically have normal or above average intellectual capacity along with poorly developed social skills. It’s thought that their emotional and social development or integration happens later than usual.
One of the big clues that Malcolm was different was the fact that he didn’t talk. He was almost four years old and barely said a word. He was in pre-school, so he had lots of opportunity to talk. And he was writing – the names of books, the names of videos he liked to watch, the names of every station on the subway line spelled perfectly and written in the colour in which it appeared on the wall, and the entire “warning” that shows up at the beginning of a video. So clearly he was smart. He was just quiet. Or so my husband and I wanted to believe.
My daughter talked early. At three years old she was pedantically explaining how to properly pronounce “pachysephalasaurus” to her aunt. So when my son didn’t start talking, I had no benchmark for “normal.” He was clearly bright; he was just slower to speak. Wasn’t that pretty typical for boys? He had a remarkable memory – he could quote whole paragraphs from his “Thomas the Tank Engine” videos or from books we had read to him. In fact, he used those quotes to tell us what he wanted. When we asked if he was tired he’d say, “I’m tired of pulling coaches, I want to see the world.” He had a quote for every occasion. I remember laughing with my husband and saying that if we were reading him Shakespeare and that’s whom he was quoting, everyone would think he was a genius.
Now, knowing what I do about Asperger’s, I know that quoting other sources – referred to in the world of development psychology as “echolalia” – is a common trait of Asperger’s Syndrome. Echolalia is a normal way to learn language and most children use it. Toddlers babble in a rhythmic way, mimicking the cadence of language. Later children copy sounds, words and eventually phrases and sentences they hear adults use in specific contexts. The question, “How are you?” is usually followed by something similar to, “I’m fine thank you, how are you?” With Malcolm, “How are you?” was always followed by “How are you?” which was then followed by two repetitions of “I’m fine, thank you.”
When children first learn new phrases, they learn them using a “gestalt” – or whole – style of language acquisition; they learn language in chunks rather than the tiny component sounds and specific meaning of each individual sound or word. Eventually most children graduate to an analytic form of learning language, analyzing the way language is used in other contexts and understand the individual words and sounds.
The point at which children move from gestalt to analytic learning or from echolalia to spontaneous language is often marked by unique new words or interpretations. Most children invent words or phrases by adapting what they already know to encompass something they don’t know the word for. They generalize grammar, for example. Instead of saying “I went,” they say “I goed,” generalizing the “ed” for past tense. And since there is no word for the space behind your knee, but the space under your arm is an armpit, a “kneepit” is born.
In Malcolm’s case, the move from gestalt to analytic language came really slowly. While most kids start the move at about 30 months, for Malcolm the move came after age 6. And it only came after I became aware of what was happening to him and started actively teaching him language. He appeared stuck. He could only repeat what he’d heard before. He wasn’t acquiring any new language on his own. And when he did repeat, sometimes he had no idea what he was saying. He’d simply latched on to one of the words he’d heard and then chosen some phrase containing that word to repeat. When he asked him if he was hungry, he’d recognize the word “hungry” and quote Stellaluna, assuring us that he had no intention of eating worms again. When I wasn’t crying, I found the things that would come out of his mouth pretty funny.
Malcolm’s phenomenal memory meant I wasn’t always aware that he was repeating since he could keep much more in memory than I could. Once I realized what was happening, I had to start mixing things up a bit. I couldn’t continue giving him pat phrases that he could use since that wasn’t really teaching him anything. I had to start changing things around, giving him new words along with the old ones, and showing him that language was creative, dynamic, evolving. I had to drill him in vocabulary and then incorporate as many new words as I could into our everyday language. It was a constant push to get his vocabulary up to speed.
People with Asperger’s often speak in a pedantic way, using formal and very structured language. It’s one of the reasons peers have so much difficulty relating to these children, and it’s one of the reasons they earn nicknames like “Professor.” They also have a tendency to interpret language literally. I remember coming back from Winnipeg after working on a pilot for Til Debt Do Us Part. I was explaining to our piano teacher where I had been and I said, “I shot a pilot.” Malcolm was horrified. “You show a pilot!” he shouted. I had to explain the multiple meanings of both “shot,” and “pilot.” That summer we spent many hours learning idioms. And we giggled quite a lot while we were learning them because Malcolm has quite a sense of humour and found the pictures created by these phrases very amusing.
Malcolm has come a long way when it comes to his language development. When he was diagnosed at 4 years old, he had the vocabulary of an 18 month old. He had virtually no pronouns and no category words. When you asked Malcolm, “What colour is the crayon?” he would respond with “I don’t know.” But if you said of a blue crayon, “The crayon is orange,” he would object and say, “Is not orange, is blue.” He knew all his colours – even chartreuse and magenta – but didn’t know what you wanted when you used the word “colour.”
Ditto pronouns. He couldn’t keep up with the changing places of I and You, of I and Me, of Us and We. It was baffling. Were you Me or were you I? And when it came to He and She, they were interchangeable, with a default to He. So while he could have been diagnosed with gender confusion – not being able to tell boys and girls apart – it was actually pronoun confusion.
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I’ll post part 2 of this next Friday. If you want me to keep going after that, say so now. If I don’t get at least 100 YES comments, I’ll assume that this isn’t interesting to enough readers and I’ll stop posting these. If I do, then I’ll continue for another month and then check back in again.
April 27, 2012 at 4:22 am
An emphatic yes from me, please continue, Gail.
April 27, 2012 at 4:25 am
Delurking to say how much I’m enjoying reading these. Thanks Gail!
April 27, 2012 at 5:41 am
Enjoying very much!
April 27, 2012 at 6:24 am
YES!
April 27, 2012 at 6:25 am
Please keep it up! I’m enjoying what you have written about Malcom and I’m learning a lot.
April 27, 2012 at 6:28 am
Please keep going. Our cousin’s son is autistic, and this explains so much. Thank you
April 27, 2012 at 6:42 am
Yes – I find this very interesting. Thanks for sharing.
April 27, 2012 at 6:45 am
Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes
There’s a 100 yeses for you:)
April 27, 2012 at 6:59 am
YES!!!!
April 27, 2012 at 7:01 am
Yes. It’s nice to have a parent’s personal journey shared. It provides insight into the families’ struggles and tribulations. As a professional who has worked with many children on “the spectrum”, it helps me to better understand what they go through.
April 27, 2012 at 7:02 am
Yes, please keep going!
April 27, 2012 at 7:12 am
Yes please!
April 27, 2012 at 7:15 am
Yes please!!
April 27, 2012 at 7:15 am
Yes!!!
April 27, 2012 at 7:17 am
yes from me, too!
April 27, 2012 at 7:17 am
Yes, yes, yes! Please keep going!!
April 27, 2012 at 7:20 am
YES
April 27, 2012 at 7:21 am
Yes please!
April 27, 2012 at 7:21 am
YES
April 27, 2012 at 7:22 am
YES!
April 27, 2012 at 7:23 am
Yes! Please continue!
April 27, 2012 at 7:25 am
Yes, please continue with these posts.
April 27, 2012 at 7:33 am
Please keep this up Gail. Our neighbour’s grandson has AS & his “talent” is numbers/statistics expecially sports stats. He was a great kid once you understood his view of the world. Our kids enjoyed having him around.
BTW how did you manage to put in the extra time with Malcolm and still work?
April 27, 2012 at 7:38 am
Yes, please continue.
April 27, 2012 at 7:38 am
Yes please!! I am loving reading about you and Malcolm.
April 27, 2012 at 7:38 am
Yes, please keep going.
April 27, 2012 at 7:39 am
Yes!
April 27, 2012 at 7:40 am
Yes. The back stories to who we become are not just interesting — they are important.
April 27, 2012 at 7:43 am
Yes!
April 27, 2012 at 7:50 am
Yes
April 27, 2012 at 7:52 am
Gail, I would love if you would continue to post these passages. I haven’t had much experience in my life with people with autism/asperger’s syndrome and reading about your journey is opening my eyes to how these children and their families are doing amazing things, albeit in their own special way.
April 27, 2012 at 7:53 am
yes x 100!
April 27, 2012 at 7:58 am
Yes, please keep going! I’m learning so much!
April 27, 2012 at 8:04 am
Very interesting and well written. Please continue. Louise
April 27, 2012 at 8:16 am
Yes
April 27, 2012 at 8:19 am
Yes! Very interesting!
April 27, 2012 at 8:26 am
yes please!
April 27, 2012 at 8:27 am
Yes please
April 27, 2012 at 8:27 am
Yes!!!!! Please keep going with these Gail, I’m enjoying it very much. My best friend’s daughter has Asperger’s, and reading your journey is helping me to understand her struggles better. Not to mention that I love how you’ve written this.
April 27, 2012 at 8:29 am
YES!!! Please!
April 27, 2012 at 8:31 am
yes
April 27, 2012 at 8:34 am
Absolutely yes! I’m really interested in your story.
April 27, 2012 at 8:39 am
YES!
April 27, 2012 at 8:43 am
Definately yes – so important to know another view into the world…
April 27, 2012 at 8:44 am
Yes, please! Even though I don’t have a child with Asperger’s, I do have a friend who does. I’m understanding how she is dealing with it, and what this way of thinking is like. Thanks for telling Malcolm’s story – it is very interesting!
April 27, 2012 at 8:46 am
Yes, please continue Gail.
April 27, 2012 at 8:49 am
Yes, please continue. My brother-in-law was diagnosed with Asperger’s when he was 2 but only recently that diagnosis was changed to autism. I’m enjoying reading your story.
April 27, 2012 at 8:50 am
Love this series – YES!
April 27, 2012 at 8:51 am
Yes, please!
April 27, 2012 at 8:55 am
yes please!
April 27, 2012 at 8:58 am
Yes. Please keep this up Gail. Information is always a great way to have more understanding and it’s an outlet for you also.
April 27, 2012 at 8:59 am
Yes, I find it really interesting.
April 27, 2012 at 9:01 am
YES!!!
April 27, 2012 at 9:02 am
Yes!! So very interesting to learn about this from the parents point of view. I’m learning so much. Thank you Gail and Malcolm.
April 27, 2012 at 9:02 am
YES please
April 27, 2012 at 9:05 am
Yes
April 27, 2012 at 9:05 am
Yes please. I find I have even more admiration and respect for you as you so graciously open up to us in this way……hugs to you.
April 27, 2012 at 9:06 am
Yes!
April 27, 2012 at 9:08 am
Yes please – this is so interesting – hearing it from both your perspective and Malcolm’s is so enlightening.
April 27, 2012 at 9:09 am
Yes! Very interesting topic.
April 27, 2012 at 9:14 am
Please keep talking about Aspergers and Autism – we all need to learn about people that think and function differently. I love to hear about your journey with Malcolm and how you were able to think WITH him. I truly believe that we are our children’s best advocates and cheerleaders and mentors, since nobody is more important to us!
April 27, 2012 at 9:14 am
Yes! Very interesting.
April 27, 2012 at 9:15 am
YES PLEASE! I have forwarded the first 2 posts to a friend of mine in the education system. She is very interested in your perspective. She is worried that teachers are structuring the school day for children with Autism to the point of exclusion. She is looking for anything about the art of play for kids on spectrum – to help them with social skills. And keep posting because I care. xo
April 27, 2012 at 9:16 am
YES PLEASE!!!!
April 27, 2012 at 9:19 am
Yes, yes yes…. I worked with adults with Autism and your story rings so true to me and what I figured out with those beautiful people. This is great writing, Gail, and I’m erally enjoying living this story with you and Malcolm.
April 27, 2012 at 9:20 am
Yes, please continue!
April 27, 2012 at 9:23 am
yes, absolutely, definitely, by all means, please do…yesyesyesyesyesyes
April 27, 2012 at 9:24 am
Yes!
April 27, 2012 at 9:24 am
Thank you for sharing your personal journey, I hope that you will continue!
April 27, 2012 at 9:26 am
Yes x 100 – I am really enjoying these posts. Thank you so much for sharing Gail!
April 27, 2012 at 9:26 am
Yes
April 27, 2012 at 9:28 am
Yes….I have a casual acquaintance who has 2 autistic children and I am finding it very interesting to know more. In addition to the information you are sharing…I find the personal thoughts and feelings of the parent/child very relatable. We all have a different story but similar emotions when it comes to our kids.
April 27, 2012 at 9:31 am
Yes please! I feel it’s so important to learn about others’ and their perspectives and lives and all kinds of things. So yes. YES YES YES YES YES.
April 27, 2012 at 9:32 am
yes please
April 27, 2012 at 9:34 am
Yes, please.
You are such an inspiration.
Thank you!
April 27, 2012 at 9:35 am
Yes keep going. It is so important to share your experiences.
April 27, 2012 at 9:36 am
Yes! Keep writing.
April 27, 2012 at 9:37 am
Most definitely YES!
April 27, 2012 at 9:38 am
Please continue!
April 27, 2012 at 9:39 am
Yes please!
April 27, 2012 at 9:40 am
Yes, please do!
April 27, 2012 at 9:40 am
YES!!
April 27, 2012 at 9:41 am
YES
April 27, 2012 at 9:42 am
Yes! Please keep them coming.
April 27, 2012 at 9:48 am
ditto Rockstar –> Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes
There’s a 100 yeses for you:)
April 27, 2012 at 9:48 am
Gail – we love you. I can tell that this is something that you want to share, and that it is therapeutic for you to share it with us. Your writing is interesting, and I really enjoy reading it. Please continue, for us, for sure, but also for you.
You do so much for us, do this for you.
K
April 27, 2012 at 9:53 am
YES,OUI,SI..
April 27, 2012 at 9:55 am
Yes please!
April 27, 2012 at 9:55 am
Yes please
April 27, 2012 at 9:58 am
An emphatic YES from me, though with trepidation. My youngest grandson, age 19 months, has yet to utter one single word including Mum or Dad though he is obviously intelligent and responds in every appropriate way when we talk to him. Of course it won’t be the end of the world if he is challenged in the same way Malcolm is, but his life will be easier if he is not.
April 27, 2012 at 10:01 am
Yes PLEASE! I’ve forwarded this and your other posts to my brother and sister-in-law because their son is autistic…they so enjoyed the other posts…please continue!
April 27, 2012 at 10:12 am
Emphatic YES!
April 27, 2012 at 10:15 am
Yes, please!
April 27, 2012 at 10:16 am
Yes
April 27, 2012 at 10:17 am
YES PLEASE.
April 27, 2012 at 10:21 am
Yes! My son is also on the spectrum, thank you for sharing your story.
April 27, 2012 at 10:21 am
yes… to linda above, you can talk with a speech pathologist. my son doesn’t talk, but after a full assesment we have been able to realize he understands at his age level, and we can rule out autism. here in bc iy’s free for under 3s, though tje waitlist is long
April 27, 2012 at 10:21 am
Yes please
April 27, 2012 at 10:23 am
Yes, please continue.
April 27, 2012 at 10:26 am
YES!!!