We belong to a relatively new network of parents, all of whom have kids with Asperger’s or similar challenges, and I was just recently saying how the playground can feel like the 7th ring of hell as I watch our beloved boy doing some very confusing (read: Aspergian things).
The parents talked about the balance between obligation I feel to be educating others about Asperger’s and Ryan’s right to privacy. At this stage, I’m erring on the side of education, because from what I’ve heard from other parents, eventually kids can clam up about their diagnosis as fitting in becomes more and more important to them.
There are lots of great resources out there to explain Asperger’s to family and friends. The OASIS website is a treasure trove of info from a basic “What is Asperger’s fact sheet” to a letter for grandparents (that is a little too long, but filled with good info).
When we first researched Asperger’s what we read didn’t sound like Ryan at all. It was all too vague or too clinical. Here’s what we’ve learned about Asperger’s so far (and we welcome corrections, additions and general comments!):
1. It’s about the brain, not about behaviour. As we tell Ryan ‘Your brain is wired differently. It makes some things easier (like reading) and some things harder (like managing ‘big’ feelings). AS kids see the world through a different lens and we have to constantly remind ourselves of that.
2. Not every Aspergian is obsessed with cars or trains. Yes, kids with AS tend to have special interests, but Ryan’s interests actually change regularly, with the exception of reading, which is constant. What is distinctive about AS kids is that their special interests tend to be all encompassing, so they will often lecture others about their passions with little regard for the reciprocal nature of conversations. Their voices may also sound wooden or flat.
3. Little professor syndrome: “Daddy, do you hold me in lower esteem than my brother?” Ryan’s highly advanced use of language is extremely entertaining (and occasionally embarassing) and is somewhat typical of AS kids.
4. Completely misses the hidden curriculum. This is where things start to get difficult for the kid with AS . While they might be able to read and even respond to questions, they often ‘don’t get’ the unwritten rules that are part of everyday functioning in our ‘neurotypical’ world:
- reading facial expressions (they look bored by all my talk about spies…)
- unspoken rules (you don’t tell the teacher ‘you shouldn’t yell at him’)
- appropriate and inappropriate language (you can talk about poo with your friends but not the principal)
In short, AS kids really ‘don’t get it’ because their brains function completely differently than ours. I’ve heard of a number of AS young people and adults who take acting classes to ‘learn’ how to respond to particular situations.
5. Difficulty understanding the emotions of others. AS kids often have a neurological roadblock that keeps them from understanding or predicting the behaviour of others. They sometimes can’t see the connection between their actions and how they impact others and they can have difficulty seperating fact from fiction (Ryan lost something at school this week and immediately assumed someone stole it from him, even though he had lost it.)
6. Accessing information from one situation and applying it to another. Most kids learn something a few times and then can access that experience and apply it to different situations. An AS mind is a busy and confusing place, so although kids may be able to recite the correct response to a difficult situation, they can’t necessarily access that knowledge when they need it.
7. Visual trumps verbal. Although Ryan’s verbal skills were very advanced at a young age, his ability to process verbal requests is quite limited. Written instruction works best because of his highly visual mind. I really liked the way the HBO movie about Temple Grandin illustrated this phenomenon. This is a real challenge for me as a parent, since I’m a big talker and all that does is add noise and confusion to any situation.
8. Sound, smell and sight sensitivities. Someone once described an Aspergian brain as a blackboard covered with hundreds of similar yellow sticky notes. They all look the same and are overwhelming because no one note stands out. That’s the sensory overload experienced by some AS kids – the white noise at the pool can be overwhelming, or a seemingly mild smell like cucumber, even the hum of the fluorescent lights at school can be difficult.
9. Social interaction can be hard. Impaired socialization is a hallmark of Autism Spectrum Disorders, so although an AS kid may want to interact (and many do!) they don’t know how to enter a conversation or ask to join a group of kids.
10. “…Some argue that persons with AS are under constant or near-constant stress.” This was one of the hardest sentences I ever read about AS. The world can be an extremely confusing and unpredictable place for Aspies. One online resource is called Wrong Planet and I think that just about says it all.
The last thing I should say is that the Autism Spectrum is incredibly broad, so some of the issues above won’t affect all kids with AS. Each kid is different. That was one of the challenges with diagnosing Ryan originally – he didn’t fit the mold in some ways, but he did in others.
What would you tell others about Asperger’s? What resources have you used to explain it to friends and family members?