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 10:26 am
Yes, My son is 11 and is HFA (high functioning autistic), he is actually almost the exact opposite of an Aspergers, it was soooooooooooooo hard to convince the SD to take him out of the autistic support programs and place him in learning support, but the journey is extremely hard and lonely. Especially since typical parenting techniques don’t work since they don’t get long term consquences, and when they fixate on something their whole focus is on that object where they will self destruct to possess it. By the way Denise for play therapy there is a woman named Michelle Garcia that does a program called Social Thinking, and there is Dr. Greenspan (spelling?) does a program called Floortime, there is also RDI program, and ABA which is the traditional program.
April 27, 2012 at 10:27 am
Yes. Please keep going. I love reading the story and have to know “what happens next”.
April 27, 2012 at 10:29 am
Yes, Please!
April 27, 2012 at 10:32 am
Yes, please keep going. I have son recently diagnosed w/PDD-NOS as a teenager and your column helps me feel not so alone as a parent in this journey.
April 27, 2012 at 10:35 am
Thank you so much for sharing your experiences and please continue to post them. My son has Aspergers as well and it is always helpful to hear from other parents who can relate.
April 27, 2012 at 10:35 am
Yes!!!!!!!!!!! Very interesting — I look forward to it!!!!!!
April 27, 2012 at 10:36 am
yes please!
April 27, 2012 at 10:42 am
Yes! That’s it..100
April 27, 2012 at 10:47 am
Yes…please
April 27, 2012 at 10:48 am
Love this. I admire your determination and strength. My daughter has learning challenges, albeit much less pronounced. My eyes were opened at how idiotic we all are to people that are different when family started giving inane suggestions on how we could fix her. Also love that you are being open about a topic not many people understand and this can help us be more compassionate and less idiotic in our daily lives.
April 27, 2012 at 10:51 am
Very interesting. Yes, yes, yes. Does that count as 3?
April 27, 2012 at 10:56 am
Pleae keep posting this. My son has AS and was diagnosed at about the same age as Malcolm. I can relate to a lot of what you write, and it actually brings me peace of mind knowing that someone else knows what I’m going through. It also shines a light on the child’s perspective which i find helpful. Its been quite a few years now (my son is 13) but outside perspective is helpful and refreshing. Thanks so much for sharing with us, Gail.
April 27, 2012 at 10:56 am
Yes, please. I don’t usually love the other ‘non-money’ posts, but these ones are so interesting and nicely written. Thanks Gail!
April 27, 2012 at 11:00 am
yes please
April 27, 2012 at 11:01 am
Yes, please continue. I’m finding this series completely fascinating.
April 27, 2012 at 11:01 am
Please keep going, I sincerely appreciate you sharing your family’s experience with Asperger’s. My son was diagnosed at 4 with Aspergers and I find comfort and knowledge with hearing of their experiences. Thank you Gail – you have yet another wonderful gift to share with the world.
April 27, 2012 at 11:05 am
yes, please continue. Most interesting and does a great service in making Asperger`s understandable.
April 27, 2012 at 11:15 am
YES! I have twin boys with speech Apraxia… Different issues, but some of the same parenting hurdles… Panic, stress, blame, shame, worry, education, laughter and most important love.
April 27, 2012 at 11:20 am
YES PLEASE! You have a real gift for writing, and it’s been really nice to hear about your family and life behind the shows and financial ass-whoopings.
April 27, 2012 at 11:30 am
Yes!! I find it extremely interesting
April 27, 2012 at 11:40 am
Yes please!
April 27, 2012 at 11:40 am
My son has 23 of the 25 “traits” needed to be diagnosed as Asperger, so it was frustrating trying to explain his behavior to others. He is fine now but the toddler thru elementary school years were brutal. Here in Texas, there are some teachers who totally get it and I was fortunate that when I demanded that they test him, they did. But it took over a year to get him some special services. Our school had a wonderful woman that really helped him. We also had him tested on our own. He is a wonderful kid and I wouldn’t change him even if I could. He doesn’t remember most of his outbreaks and I thank God for that. I took lots of photos and only kept the ones where he had big smiles. I tell him that he had a great childhood, that is my story and I’m sticking to it! I know what we went through is nothing compared to full on Aspergers or Autism. My heart goes out to the families that are struggling but God has a plan for each of us.
April 27, 2012 at 11:41 am
Yes, please continue. I look forward to Friday mornings to read your journey with Malcolm. I find you motivating and inspiring. You truly are an amazing Mom!!!!!
April 27, 2012 at 11:42 am
Yes keep sharing!
April 27, 2012 at 11:46 am
yes.
April 27, 2012 at 11:47 am
Yes please.
April 27, 2012 at 11:48 am
Yes!
April 27, 2012 at 11:50 am
Yes please!
April 27, 2012 at 12:00 pm
These have been fascinating; please continue to share.
As an aside, I think you meant to write that Malcolm exclaimed, “You shot a pilot” and not “You show a pilot”… which was a very sweet anecdote, by the way.
April 27, 2012 at 12:13 pm
Yes please!
April 27, 2012 at 12:14 pm
Yes, please! Thank you for sharing.
April 27, 2012 at 12:28 pm
It’s a fascinating read. Thank you for sharing such an intimate part of both your lives!
April 27, 2012 at 12:31 pm
Yes!!! (Not that you need anymore convincing!)
I do not have children or know anyone with AS, but I sincerely appreciate the insight. I find stories about all children, families and parent/child interactions fascinating and their anecdotes endearing. If you keep sharing, I’ll keep reading!
April 27, 2012 at 12:32 pm
Yes, please!
April 27, 2012 at 12:36 pm
Yes, it’s fascinating, especially as I know a child who was just diagnosed with this condition. I admire you more than ever.
April 27, 2012 at 12:37 pm
Yes please! It reminds me of a little boy I babysat for when he was age 4 to 8 that wasn’t diagnosed with anything, at least at that point, but sounds so much like your son. I think his parents were in denial, and since he was homeschooled it wasn’t discovered in school.
April 27, 2012 at 12:48 pm
Yes please!!
April 27, 2012 at 12:54 pm
As the Mom of an ADHD-er, I do find this fascinating. Please continue.
April 27, 2012 at 1:14 pm
I have 2 kids on the spectrum, my 8-year-old was diagnosed with ASD at 20 months (and is very similar to Malcolm in his speech development) and my 11-year old was diagnosed with AS at age 10. Keep going, I always love to hear other perspectives!!
April 27, 2012 at 1:15 pm
Yes Please!!
April 27, 2012 at 1:20 pm
Yes! please….
April 27, 2012 at 1:26 pm
yes please continue!!
April 27, 2012 at 1:34 pm
Yes…please continue!
April 27, 2012 at 1:42 pm
YES!
April 27, 2012 at 1:53 pm
Yes Gail, please keep writing “A Mind of My Own”. I grew up with a sister who was diagnosed as profoundly deaf at about 2.5 years old. It was traumatic for my parents to accept, but wonderful parents that they are, they sacrificed much of their life as a couple to help every way they could. It’s a long story. Lil Sis is now in her 40s and I am in my 50s. Challenges exist when dealing with government and financial institutions, getting a divorce, etc. My sister is often asked to give someone power of attourney because they cannot not effectively communicate with her. That makes her highly vulnerable. People in this situation are ealily taken advantage of in that they do not get the best advice. So family support very important and includes parents and siblings. My heart goes out to all the kids who have little or no support in this world.
Your writing style makes it easy for people to understand and learn. I’m sure yours and Malcolm’s story will boost the morale of many who share similar challenges and will teach us all a little something.
April 27, 2012 at 2:00 pm
yes
April 27, 2012 at 2:20 pm
YES!
April 27, 2012 at 2:51 pm
Yes Gail, keep going. I think the world needs to see into your life and Malcolm’s life before they can realize what a treasure he and every child is.
April 27, 2012 at 2:59 pm
Yes! These post are great Gail. Thank you for sharing.
April 27, 2012 at 3:00 pm
My father was not diagnosed with Aspergers until he was an adult. I can only start to imagine what life must have been like for him and his family as a child…this conversation helps me to understand some of those challenges.
April 27, 2012 at 3:41 pm
Yes!
April 27, 2012 at 3:57 pm
Yes please!
April 27, 2012 at 4:07 pm
YES YES YES…..please! Gail, you have helped me understand more and more about my stepson who passed away almost a year ago on the dot. There were so much I did not understand and struggled with. Anyways…..
Yes please.
April 27, 2012 at 4:37 pm
Yes, PLEASE keep going!!!
April 27, 2012 at 5:19 pm
Yes, please! Thank you for sharing.
April 27, 2012 at 5:31 pm
Yes please! So fascinating to compare other mum’s stories with mine. My son Cam was originally diagnosed with ADHD but later Aspergers. When he got to College, Cam discovered the Educational Assistant program and flourished. With the right amount of advocacy and support he is doing just fine. He even did a co-op in High School with the army and it made a HUGE difference in him. He LOVED the structure.
When I say the “right amount of advocacy” I mean NOT doing everything for these kids. They can in many cases function just fine with a little guidance.
Keep going Gail!
April 27, 2012 at 7:18 pm
Oh please don’t stop! While I don’t have any Aspie’s in my family, I come across many in my work and I’m thoroughly enjoying reading about your journey.
April 27, 2012 at 7:25 pm
yes, please continue
April 27, 2012 at 7:40 pm
Yes, please, Gail. Thank you for opening your life to us.
April 27, 2012 at 9:26 pm
You’ve got your “100 YES Comments”, but I’ll still add mine to the list. Yes – this is very interesting!
April 27, 2012 at 11:17 pm
Gail- my grandson, Jay, is slightly autistic. He just said his friend’s name, and he said, “mine” when he spent the night with me last. Although I’ve been an RN, it’s been a long road. I am @cookingwithT on Twitter and @Lindt recently did a #Pin4Autism. I LOVE your Princess show, as I have three foster kids ( biological nieces) that were Princesses. I’m trying to teach them. I am host of the weekly Twitter hashtag chats #HomeEc and #TravelChick and have had them on there. My uncle is a Mennonite Minister, and I am trying to get them to enjoy more simple things. They were all adopted out, and each have returned to my mother’s haus when they turned eighteen. I also teach them to give 10% to the needy ) usually the food bank) or church. I’m a firm believer in tithing. I only got cable so that I could watch Princess, as the Slice channel on the web wouldn’t let me download the videos.
April 28, 2012 at 12:29 am
Yes please! My brother is on the spectrum, and I always find it interesting to read about others’ experiences!
April 28, 2012 at 7:10 am
Please continue to share your’s and Malcolm’s journey with us.
April 28, 2012 at 10:44 am
YES!!!! Your at about 63!!! Do I have to post xxx more times? I will. Your the new voice for AS and just wait until your discovered!!! Your helping more than you know!!! I knew money matters wasn’t your true calling. Inclusion and understanding is are key to making a difference. Thanks Gail and Malcolm for allowing us to become apart of your life.
April 28, 2012 at 11:24 am
YES:)
April 28, 2012 at 7:09 pm
Yes, Please you are educating me on Aspergers.
April 28, 2012 at 7:20 pm
yes. please
April 28, 2012 at 8:57 pm
yes..my son was at Martin Grove Collegiate in Toronto and they had a wonderful special ed department that was critically important to the students who had as.
April 28, 2012 at 9:10 pm
YES!
April 28, 2012 at 9:53 pm
children with ADHD,AS… do very well with music. Piano lessons with a teacher that has expeience working with these children. Also it is worth while checking out the listening Center in Toronto.
April 28, 2012 at 10:23 pm
YES!!!!! PLEASE!!!
April 29, 2012 at 8:21 am
Yes please. love anything you write, but your ability to provide some clarity from your life experiences is very informative. thank you for opening up and sharing.
April 29, 2012 at 9:20 am
I have a grown son with A.S. very high functioning, college grad, totally independent, great career and works very hard, very loyal. Has his own car, started driving at 17. He was a Air force cadet at the Sargent level and earned the Ontario Cadet Award.
He has some female relationships, some good and not so good, but that is normal and that is life.
As a child there was nothing for him in the school system, but the principal of his school between grades one and eight work with both him and us to see that he got the same education as any other child, he was above average in all his grades. I stayed on top it in high school, and then on to College in both Barrie and Sault Ste. Marie. he graduated from Soo College and never looked back.
The key for me as his Mom was to get him ready to live and work on his own, prepare him to handle all aspects of his life, from insurance, taxes, renting , paying his bills, cleaning, cooking and shopping, buying and looking after his car. He is more reliable then most young men, he is a devoted son,brother and Uncle. He has worked with our horses, taken music lessons, driven across Canada, so the list goes on. He has never drank or done the drugs, he loves nature and all animals
My only advice to anyone raising a child with AS is to let them fly, don’t do everything for them, let them learn, include them and enjoy who they are and not what society says they are. I never treated him as different, it was just what it was, so lets get on with it. I am a very proud Mom.
April 29, 2012 at 11:58 am
Yes, please keep going!
April 29, 2012 at 12:11 pm
Yes, please keep writing about this. My daughter has PDD-NOS (pervasive developmental disorder not otherwise specified) that was not diagnosed properly until she was in her early thirties. PDD-NOS is considered “subthreshold autism” and “atypical autism” because it is often characterized by milder symptoms of autism or symptoms in only one area such as social difficulties. Persons with PDD-NOS may demonstrate pervasive deficits in the development of reciprocal social interaction or stereotyped behaviors, but do not meet the criteria for a specific pervasive developmental disorder or other psychological disorders such as schizophrenia or avoidant personality disorder.
I look back now and sometimes want to cry when I think of what I would/could have done for her if I had known the source of her struggles. On the other hand, we must have done some things right because she now owns/operates her own company.
April 29, 2012 at 2:39 pm
Yes, please. Absolutely incredible. Learning so much about AS and it is so much more engaging with real stories/real lives. You constantly amaze me, Miss Gail!
April 29, 2012 at 2:57 pm
Yes, I hope you continue sharing your story.
April 29, 2012 at 5:05 pm
Yes please!
April 29, 2012 at 7:07 pm
As a mom of 3, two of whom have AS, yes please continue to share your journey.
April 29, 2012 at 7:46 pm
Yes, Gail! Please keep going!
April 29, 2012 at 10:16 pm
Yes, I’d love to hear more as my son, who’s 12, appears to be “on the Asperger fence” without a diagnosis. I see a lot of similarities between what you write about Malcolm’s experiences and what I see in my son – delayed language in particular, and my son also struggled with pronouns and grammar in general. “in front, behind, beside, on top” – he couldn’t get these concepts either and for a long time boys, girls, ladies, men were all “its” because he couldn’t understand how to use he/she/his/hers/them/theirs. So hard for some children to learn these nuances of language. It’s nice to read that we aren’t alone.
April 29, 2012 at 11:45 pm
Yes please. I am very interested to hear your story. My two year old grandson is undergoing tests to determine whether he is autistic or not and your first hand observations on the subject are welcomed. Best wishes to your family – Malcolm is in good hands!
April 30, 2012 at 2:14 am
Yes, please continue Gail….this is a fasinating blog to read and I believe it really helps those of us who come into contact with people with autism for only short periods of time or not on a regular basis. I’m finding it very helpful to understand how one of my casual co-workers thinks about things and why he says and does what he does.
Thank you Gail!
April 30, 2012 at 7:56 am
Yes, your style of story and explanation is very interesting and informative at the same time emotional.
April 30, 2012 at 8:18 am
Please continue. I am learning so much.
April 30, 2012 at 1:58 pm
A yes from me. Thanks so much for posting these, Gail.
April 30, 2012 at 3:51 pm
Yes, please….!
April 30, 2012 at 6:55 pm
I would like to add my yes too! I have taught students with Asperger’s so I am interested in learning more!
May 1, 2012 at 1:30 am
Gail please continue – I really don’t know much about autism and Asperger’s and I am looking forward to learning from you. Thank you.
May 1, 2012 at 1:44 pm
Yes! It’s like I’m learning about a whole different world. Thank you.
May 1, 2012 at 9:12 pm
Yes, please going! I don’t have kids but I am fascinated by autism. I think we have been surrounded by geniuses through the ages and it’s only now that we are called these wondrous people “autistic”.
May 3, 2012 at 11:40 am
Yes, please continue. You have a lot to teach. I enjoy learning about money from you, and now I’m learning something new!
May 7, 2012 at 2:18 am
My daughters boyfriend has a brother with Asperger’s I have met him a few times he seems very withdrawn and plays on the computer a lot. So this is something that I would love to learn more about..
May 9, 2012 at 9:57 am
My son has Asperger’s as well, and I am loving reading this. It is nice to hear what other’s are going through with it as well. Thanks. Love this!
September 25, 2012 at 12:57 pm
I came across this blog post today, and I really hope you decided to continue.
Writing about your experiences having a son with Aspergers, is a great way to raise awareness for the diagnosis and what it can entail.
I have a disability called spina bifida. I created a website to raise awareness for spina bifida, as well as talk about it in my own blog.
I loved reading this blog post and am going to look for more now.