Throughout World Autism Awareness Month 2013, our readers were offered the opportunity to ask JKP authors a question of their choice. Jennifer Cook O’Toole answers your questions on parenting a child with Asperger Syndrome. 
Amanda asks “my two are hermits and hate socialising. They tolerate it but I would like to make it less stressful for them. I’ve tried all the usual things of iPod and head phones, shopping on quiet days, chew buddy, iPhone gaming… Any other suggestions would be good.”
It sounds like you’ve done a good job of considering some of the sensory concerns that may bother your kids, Amanda. That’s a great start. At least as important is making sure that “typical” social expectations aren’t being imposed upon kids who aren’t wired typically. In other words, do they want to have new experiences and friends….or is that what others want for them? It’s so hard for us, parents, to tease apart our desires from our children’s. And Asperkids, by their very nature, are going to need less (not none, just less) socializing and more “down” time. That needs to be respected. But, if your kids are feeling “stressed” in social situations and you’ve got the sensory stuff nailed, the other major component is anxiety. Your kids love gaming because the rules are clear and predictable. People are anything but! So who would want to get out there and hang? When the world feels chaotic, it feels scary. That’s why I wrote The Asperkid’s (Secret) Book of Social Rules. It’s a comics-infused explanation of the world’s hidden social rules that levels the playing field for ALL of our kids.
Hannah asks, “How do you teach your child that there are hierarchy in roles , ie- mum and dad aren’t told what to do by a child, but a child is told what to do by an adult… Such complex understanding is needed from such a young age, mostly I guess its inflexible thinking that causes our son to tell us what to do- but we are the parents not him… But explaining that to a 5 year old is something that I’m having difficulty with! Can you offer any tips?”
This is a really common problem! In fact, it’s such a biggie that The Asperkid’s (Secret) Book of Social Rules has a whole chapter devoted to making corrections (or not) and the sticky hierarchies that complicate everything. Really, the issue is that we Aspies crave accuracy. When something’s amiss, it needs fixing….now. Leaving it “wrong” (or seemingly wrong, anyway) is as difficult and distracting as ignoring an itch. To really help your son understand the “why’s,” please read the Rule Book yourselves, and then simply translate for his age (I’ve done this for my 6 and 3 year-old). For right now, here’s a super-shorthand you can use for the “hierarchy” issue: Down, yes (gently). Across, maybe. Up, no way.
“You can kindly correct someone over whom you have control or influence…only correct a peer if you HAVE to — they won’t like it….and never, ever, ever correct an elder or authority figure…unless safety demands it, correcting “up” is just rude.”
Sarah asks, “how can we teach our 8 year old son the concept of time and being ready for things, such as school, outings, doing jobs etc by a certain time? We have tried timers and visual schedules but he gets lost in looking around and touching things he doesn’t take notice of his timer.”
Oh, Sarah, I know the feeling! This is a big one at our house, too. Generally, we rely on a few tools:
- a visual timer (see Resources in Asperkids — this is NOT the same thing as a regular timer)
- streamline your home. The Asperkid’s Launch Pad is all about how very specific, easy changes in the way you lay out his environment can have an enormous impact on the day.
- set way points – break down every task into smaller milestones so he doesn’t get lost mid-process and then be insurmountably behind. So, instead of “You have 10 minutes to get dressed” say, “Change pants. Change shirt,” and have him repeat the shortened directions out loud as he does it (almost like a whispered chant). He shouldn’t say or do anything else until those words are “done.” Then, move on to the next step, be it brushing hair or getting socks. The same thing goes for schoolwork, etc. (You can also read a blog I wrote about this at www.Asperkids.com/candyland)
- use technology! Reminder alarms and messages on iPod’s and smart phones can keep everyone more on-track.
Pam asks, “will his self stimming behaviors ever decrease? Every year I hear from his teachers and the Occupational Therapist that he has a “tool box” of sensory strategies to use, but it doesn’t seem to help much. Can you offer any advice that will help?”
“Stimming” is a way of decreasing anxiety and increasing focus – just the way you might bounce your knee or tap a pencil in a long meeting. While some of the needs met by stimming may be sensory, that’s not the whole story.
Anxiety is the basis for stimming…and a whole lot of what we, as Aspies, do. In order to reduce one anti-anxiety behavior, Pam, you need to offer another solution (if you took away my private “in case of stress” M&M stash, I’d sure need a substitute!).
Look more closely at what’s happening when your son is stimming most: what’s making him nervous? Use The Asperkid’s (Secret) Book of Social Rules to counter social anxiety. Provide chewing gum (two pieces at a time – tell school it’s a MEDICAL NECESSITY) or a very sour hard candy and lots of “fidget” toys, all of which will send calming signals to his mind and body. There’s more practical information on this very question in both The Asperkid’s Launch Pad and in the upcoming Asperkid’s Game Plan.
Lynne asks, “I believe I may have Asperger’s due to problems in social interaction since childhood. I am socially awkward and often feel overwhelmed when there is a lot of stimuli, even when surrounded by family. I have found ways to accomplish tasks that I once found difficult by organizing and planning things. But if something happens to change my plan, I melt down. I have been admonished at work because of having to have things done “my way”. I have found ways to function in life. Do you see any benefits of getting diagnosed at the age of 56? And what methods may be used to help me? Is it worth the time and money for me to pursue this at this point?”
Knowing yourself better is important at EVERY age. Your life isn’t over, Lynne! Don’t dismiss the value of the many years left ahead of you by underestimating the power of insight.
If you think you are an Aspie – odds are that you’re right. Read Asperkids, and you’ll see just how powerful the impact of my own adult diagnosis was in reframing the way I saw my past, present and future. After all, the better you “get” yourself, the more healthy relationships you will have, the more satisfying work you’ll accomplish, and more effectively you’ll be able to meet needs you may not even realize you have.
With or without a formal diagnosis, read The Asperkid’s Rule Book. You may not be a teenager any longer, but know that I started writing that book as a journal for myself at age 34…and I’ve had adults (your age and older!) from all over the world tell me that this book has literally changed their entire lives. I hope it will give you the same peace of mind and spirit.
Jennifer Cook O’Toole is the author of Asperkids: An Insider’s Guide to Loving, Understanding and Teaching Children with Asperger Syndrome (2012), The Asperkid’s (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome (2012), and the forthcoming The Asperkid’s Launch Pad: Home Design to Empower Everyday Superheroes (April 2013) all published by Jessica Kingsley Publishers.
Okay, here’s a heads up that my thoughts are not politically correct, but you may have noticed that politically correct isn’t really “in” in 2017, so here goes.
I am an adult woman with Aspergers/ASD, and my question is: if you had known you had Aspergers before you had kids, would you have chosen not to have kids? I’m not implying that you don’t love your kids as individuals, but my experience has been that Aspergers causes a lot of suffering for the individual, their family, and larger society.
Your experience shows clearly that this is a genetic condition, although I don’t actually blame you since you didn’t know you had it. I really feel like since there is no cure or even medication (there isn’t is there?) for this, we have a responsibility to prevent new cases. What are your thoughts?
To be honest, I have similar beliefs. Is it right to bring an aspie child into this world with no guarantee of them being able to control it. But to be honest, it is not the fault of the aspies. It is the nt`s that cause them to suffer
If things are to truly get better, nt`s should be properly educated. So many of us have taken our own lives from the despair. The world that forces that despair on them in unacceptable. The nt world does not get us. They are too selfish to get us
As long as that fact remains, we will continue to suffer
But that is why I deeply respect Jennifer o`toole. She is an aspie struggling to break that cycle of despair. To show us all that hope is not lost. We just need to continue fighting for our people. Then one day all of us aspies will finaly be free from that disappear and be accepted by the nt world