A Mind of My Own
Posted by Gail | Filed under Autism
Chapter Ten: Social Interactions (Part 2)
I’ve sometimes felt somehow at fault for not encouraging Malcolm’s friendships. I went out of my way for Alex. But Malcolm just wasn’t interested. And each time I tried, the effort was so painful for him — and me — that I let him be alone.
We would invite a friend over for a play-date and then Malcolm would fixate on one of his favourite activities and totally ignore the playmate. Or we’d invite someone Malcolm seemed to like, and that person would always have something else to do. We’ve never had a traditional birthday party for him, because there were no children to invite, particularly in the very early grades. As he has grown older, he’s shown a little more interest in the people around him, but no one would ever call him a social butterfly. His classmates at school have always “taken care of him” – made sure he’s chosen in gym or helped him find his place in the work being done, but the relationships have been more “helpful” than “friendly.” I am grateful to those children for watching out for my son, even as I prayed that at some point he would meet a friend who he would get and who would get him. Sometimes I wanted to cry because I felt his loneliness so acutely. But, in reality, Malcolm didn’t seem lonely. He was content in his alone-ness. Turns out he thinks he has a great life. He doesn’t feel like he is missing anything (as far as I can tell). And he’s happy.
It took a really, really, really long time for Malcolm to get the gist of what a friend is. He simply didn’t know how to go about making friends. And many of his behaviours run counter to “friendship.” He wasn’t very good at taking turns, despite my best efforts. He HATED to lose and would cheat or stomp away rather than face the unpleasant feeling he had when he didn’t win.
Because I know that the development of the skills associated with socializing and working in a group setting are crucial, I’ve kept Malcolm in a traditional school setting even though my instinct has always been to home-school him full time. And I’ve taken every little tiny piece of advice I’ve read, heard or had shared with me to see if it would work with him.
Since Malcolm never seemed to know what to say in various circumstances, I had to coach him heavily. I started by giving him the exact words or phrases to use within a particular social context. We’d role-play using the model conversation. Since this building of a “pattern vocabulary” is what works in all kinds of sports, indeed in anything that’s skills-based, I decided it made sense to do it with social skills too.
I had Malcolm rehearse what to say on the phone to his grandmother before making a call. Then we’d role-play the conversation. Then I’d call her and fill her in. Then she’d call and ask to speak with him and I’d watch and hint from the sidelines as he “conversed” with her.
Malcolm never found it easy to carry on a conversation so I made a point of having him talk with me about something each day. Sometimes over breakfast, sometimes at bath-time, we would talk about something. First the conversations were very stilted as I asked questions to keep them going. Then, as he became more fluent, I pulled back on the questions, and let the silence sit there between us. When I did ask a question, it was open-ended, “So, Mister, what did you think when that happened?” I was often rewarded with an “I don’t know.” But I never gave up. I’d moved to a ridiculous option. “Do you think that Daddy smashed his car into the garage?” He would laugh and correct me by giving a more reasonable alternative. And in that way we progressed, slowly, to the point where we could chat.
There were times when a deep swig of patience – a step out onto the porch and three deep breaths – were necessary to get me through some of his conversations. Since he could be very single-minded in his topics, and very repetitive, I had to listen to the same things over and over and over. But I let him jabber on, fixing things in his sentences, redirecting him to something new, encouraging him to share his ideas. Now he’s pretty good at conversing. People who haven’t seen him in a while are often surprised at just what a chatter-box he’s turned into. And I smile to myself and know that as time goes by he’ll only get better.
August 24, 2012 at 6:36 am
Gail I really look forward to Fridays and reading about your journey with Malcolm. Thanks for sharing
August 24, 2012 at 7:23 am
My son will start school in September. So far his younger sister has been his best friend. She knows that for some reason he “needs” his weird fixation objects and she only takes them when she wants to bug him. She knows they aren’t for sharing. She’ll let him have something of hers if he’s starting to fixate on it without complaint. She’s 2.5.
August 24, 2012 at 8:55 am
I realize that Malcolm is no longer a little kid that Mom needs to try and arrange playdates for, but the comment about how he HATES to lose got me to think of the current trend in board games (one of my actually quite frugal hobbies.. one not horrible outlay, hours of replay time). The board games are cooperative, where all of the players need to work together to accomplish a goal. You can still lose, but you lose as a group (which might help, or might not come to think of it.) Anyhow, the two examples of cooperative games that I’m most fond of are Pandemic and Castle Panic. Just a thought that popped into my head at the notion of hating to lose.
August 24, 2012 at 9:25 am
I can totally relate with my son on the lack of friends. He has a wide circle of acquaintances, but he doesn’t understand the difference between a friend and an acquaintance nor the idea of a good friend or best friend. His only true friend blew him off this whole summer and he doesn’t seem to care or understand enough to be hurt (which, I guess for him, is a good thing). It breaks my heart that he can’t build the friend circles that other teenagers do. He feels no need for friends beyond doing things/socializing some at the activities he attends. The hurt for me is immense that he has been unable to learn these skills and that there is a very good chance that he will be unable to build his own support group outside of his immediate family for life.
August 24, 2012 at 9:53 am
@ Janice – I don’t have autism but when I was younger I too didn’t have a lot of great friends. I mean I had plenty of people to talk to at school (elementary and high) but I didn’t have parties with the other kids and I didn’t really socialize with them outside of school. BUT once I got to university, I found it a lot easier to make great friends, there were more people than the the high school I had (which mean more people into what I was) and it really was a great time for me. So don’t give up hope just yet.
August 24, 2012 at 10:26 am
Gail – you are inspiring – you do all you do and still find time to be such a devoted mother to your children!
My kids hate losing too but ironically, I am starting to introduce more of these activities to them for that reason.
It’s unfortunate but our society doesn’t work on the “no one loses” philosophy – reality is that someone loses and someone wins – look at sports. I am trying to get them to see that yes, losing stinks (just like some responsabilities in life!) but it’s part of life and you have to take the bad with the good.
August 24, 2012 at 10:50 am
I wait all week for your Friday blog. It’s alway so inspiring even to those of us with “normal” kids. I often recognize the same problems with my child and get great ideas on how to deal with them.
Thanks for sharing!
August 24, 2012 at 11:05 am
Way too much emphasis is placed on “friends” and “friendships”. You can be happy alone and still have friends/social skills. I find the more friends the more pains…yes needed skills etc but often not worth the problems when we force our kids to adjust to what society deems normal for them. Then we wonder why adults can’t handle being alone as they age.
August 24, 2012 at 12:24 pm
Thank you
August 25, 2012 at 4:42 pm
My son just turned four this June and since he was a baby I knew there was something different about him, but definetely special. My eldest sister has a son with autism and I saw all the struggles she went through with him and when I held my son I could sense something. The first year of his life we went to so many specialists and so many ER visits because he constantly screamed. I call my first year with him my “hell year”. I had a neice the same age as him and I could see that he was not developing or hitting milestones like she was. Something inside of me said that I have to help my son and I bought “Your Baby Can Read” series. My son loved it and would watch it with delight. At 16 months of age he was reading the words off the flash cards and counting to 10 over and over and over. He could pick up patterns in numbers and learned the phonics of the alphebet before age 2, but I couldn’t get him to say mommy or talk with him. My family gave me and my husband a lot of grief. One of my sisters said that if I didn’t socialize him then nobody would play with him. Very hurtful comments came from my family. I was in constant denial that anything was wrong with him because he was so smart, but at the same time didn’t display any understanding for what he was reading. He never answered “Who, what, where and when” questions. I would ask him a question and he would just answer “ya”. I got him tested with a child psychologist when he was 3 years old and then we were sent to autism services. I fell into a depression because I knew what autism looked like and I could see some traits in my son, but couldn’t accept a diagnosis. I don’t have him diagnosed yet, we will meet with the whole team of specialists in September. He has been seeing an early child development lady once a week in our home and SLP and OT. They are wonderful and he loves them. I see improvements in my son all the time. We were given a book to read by this team about hyperlexia and most of what was discussed fit our son. The type 3 hyperlexia. I have been doing a lot research on hyperlexia and came accross an article that Gail wrote about her son. I started to cry because what she went through is what I am going through. I felt so alone because I have this wonderful little boy who is so smart and I so long to have a full conversation with him. Lately he was been starting conversations with me and I love every minute of it, even though it only lasts a minute. I love how silly he is and how determined he is to try new things and master difficult skills, like pulling his pants up or riding a bike! Toilet training has been a nightmare and I don’t know why. He can read and understand all the steps to toilet training, but still refuses to try. His newest obsession is spelling out words and writing them. We’ll be in the car and he say, “Can you spell cat, it’s c-a-t” and he’ll go on and on. I am afraid that a diagnosis will only label him for life, but at the same time I see how all the therapies have helped him so much. I constantly worry if I am a good parent or are we making the right decisions for him. I hate taking him to see my family because they expect him to be autistic and he dumbs himself down for them. He does so much better with my husband’s side of the family because there are no labels placed on him already. Anyway, I can see a bright future for my son. I think that he is the best kid and I admire him for trying new things and I love him so much. Thank you Gail for blogging about your son because I don’t feel so alone.
August 28, 2012 at 11:08 am
Hi Mees, Jazmin,
Being a good sport includes being able to lose graciously, and celebrating when you win.
You need the incentive of celebrating when you win to put in the effort required to get better at anything.
You need to be able to “compete with yourself”, too, to get better at things.
Competing, with others or yourself, makes some types of work less boring, and makes self-training more fun.
Competition is an important part of making a contribution in life.
This is important for all kids, no matter their level of interest in social interaction.
Co-operative games are important, too, they emulate one facet of team sports.
Ciao!
August 28, 2012 at 1:59 pm
April, I disagree. One of the most important things I taught my daughter who lives with Aspergers/PDDNOS syndrome, was to be herself within the boundaries that Society considers normal or Society will ostracize you.
August 29, 2012 at 3:34 pm
You’re doing just what you should with your cherub. He may be very introverted (enjoys parties, but 10 minutes is enough) or he may be somewhere in the milder range of the Asperger’s spectrum (like my 27 year old son). Not absorbing social skills by osmosis, the way other kids do, means rehearsing and practicing and lots of conversations with Mom to explain the world more clearly.
His brain is wired differently (aren’t we all?), but it’s still very well wired and capable. My son’s life has progressed on a different time line than his sibling’s and some years have been hard, but he’s moving along at his pace and is about to graduate from college (part-time while living at home provided the lower stress and support). Diagnosis allowed others to accept that differences were neurological, not behavioral (i.e. therefore not under his total control or indicative of bad parenting), but each family has to decide whether “labels” are useful or not in their situations and schools.
Watch out for depression as he becomes more and more socially aware and self aware, allow him to enjoy being who he is, and love him to bits to provide the security and home base he’ll need.
August 29, 2012 at 4:07 pm
Gail -
I’ve watched Til Debt do Us Part and Princess since they began showing in the states, then I found your website, and today I finally wandered over to your blog to read some more about financial decision making, but instead I discovered this section of your blog and had to read all of the entries for “A Mind of My Own.” It was practically a diary of my growth and experiences as a Mother of a child (now 27) with Asperger’s.
You’re writing a guide and great support for all parents of newly diagnosed kids and kids going through a new phase of behaviors as they grow. I appreciated reading your articulate descriptions of so many of my thoughts about the particular challenges and joys of parenting a kid with Aspergers. You’re writing a book, whether you’ve planned it or not – a large group of people are bumping into it on the blog, but it would be valuable to huge numbers who haven’t encountered your shows or other books yet and won’t find this gem you’re sharing.
Thanks for a wonderful, unexpected afternoon of feeling very connected – and feeling validated that I have been doing the right kinds of things by being “endlessly cheerful and mindfully stubborn” in dealing with son’s schools and teachers all these years. He certainly made my life more interesting and made me a much more tolerant person.
August 29, 2012 at 4:09 pm
Meant “mindfully cheerful and endlessly stubborn” I mistyped my own mantra!