Friday, August 27, 2010
Aside from the common social difficulties people with AS have, their obsessive interests seem to be a defining characteristic of the disorder. Their ability to hyper-focus on a particular object, topic or problem can be very exasperating for their caregivers, relatives, spouses and kids, but it also makes them often very gifted in specific areas. Not in a savant kind of way, but in their exclusivity they often develop great expertise in their chosen interests.
Someone told me once that Silicon Valley is the largest sheltered workshop in the world for people with AS. I've also heard that said about Microsoft Corporation, and NASA. I have to laugh, but there's a huge kernel of truth in that joking statement. People with AS are often overrepresented in the maths and sciences, because numbers, research or software related careers often involve less need for social interaction and connectivity, and demand an ability to be detail-oriented and hyper-focused. Being with a community of often like-minded people helps - it can feel safe and secure. And if their friends' interests and work are predictable and stable, they feel more comfortable around them.
I wish I had known when our son was little what the early signs of AS were. He did not receive his diagnosis until he was 5 1/2, after the better part of a year in public school. We knew well before then that something was going on with him, but it was like having a big handful of puzzle pieces, but no picture to fit them into. Even our pediatrician didn't put his finger on it. Once someone suggested Asperger's, and we did a diagnostic checklist (using Tony Attwood's book), all the pieces fell into place. CLICK! It was our son, to a T. Suddenly a lot of his personality and behavioral quirks started to make sense. That didn't make them any easier to deal with, but it at least gave us a framework to start to figure out how to deal with his social and behavioral needs.
People with AS often have a perceived need for structure and stability, for predictability and sameness in their lives. When things don't work out the way they expect, they often feel insecure, scared, or angry. It can be as simple as a toy, device or product not working when it should (breaking or malfunctioning). It can be a last-minute change in plans that totally upsets how they expected their day to go. It can be an accident or illness. (Our son hates illness - being sick is just WRONG in his world view. It totally discombobulates everything in his life, feels crummy, and is very hard for him to deal with.) This is definitely an autism spectrum thing, this need for structure and predictability, and the concurrent intense need people with autism and AS often have to control their environment, their schedule, and their interactions with others. Let me tell you, it can be absolutely exhausting to deal with on a day to day basis in a family. And, if two or more people in the family have AS, it gets even more interesting, since they're not likely to focus on the same things, or try to control things the same way. Each of them is absolutely right - even when they don't agree. Then they exasperate each other and a simple problem can escalate into a major confrontation.
So, what can the rest of the family do to survive the dynamics of living with one or more people with AS in the house? Here are things I've learned over the years:
* Avoid sudden changes in routine when possible. If a change needs to be made, give the person with AS time to absorb the idea and adjust their thinking to it. For instance, in our family we have the "10 minute warning" before we make transitions, like leaving the pool, or going out the door to church. If you've planned one activity for the weekend, but need to change it for whatever reason, tell the person with AS as far ahead of time as possible. Don't wait till the last minute to spring the change in plans on them.
* Stay calm, react calmly, and avoid confrontation. If the person with AS reacts with anger to a situation, a large part of their response can be mitigated if you don't feed into it with anger or frustration of your own. This is, honestly, the hardest thing for me to do, the hardest part of living with a family member with AS. Behavior modification is really 80% changing my own behavior and reactions, and only 20% modifying the other person's behavior. The calmer I am, the calmer they'll become through the crisis. When I overreact or feed into their anger with my own frustration, that's when things escalate and get ugly.
* Give them space when they're upset. Tell them you're giving them space, don't just ignore them or walk away. Calmly say something like, "I can see you're upset. I'll give you some space to work through this, and I'll talk with you about it in a little while." Then go find something else to do. Obviously, sometimes they need you right then - the situation will dictate your response. But sometimes leaving them alone is the best thing to do to deescalate a tense situation.
* Show interest in their obsessive interests, but don't be shy to tell them when you've heard enough for now and need a break. They really need it spelled out just like that - be polite but blunt, get right to the point, and don't be afraid to tell them that you're just not as interested in their topic as they are. If you pretend interest, they'll assume that's carte blanche to keep talking to you about it, ad nauseum. They won't read your body language that you're bored to tears and would really like them to change the topic or just go away. Just tell them, nicely, and change the topic.
* Don't let them control the whole family routine. It's very easy to fall into the trap of letting the person with AS dictate everything, because then they're happy, and it makes life seem easier for everyone in the short run. But in the long run, you've created a tyrant. The child with AS cannot run the family. Don't give them authority they shouldn't have. If it's not a choice for them to make, don't let them choose. The real world isn't going to bend to their will and schedule, and their family shouldn't revolve around them either. This is so easy to fall into, even without realizing it. Believe me, we've been there, then had a heck of a time reclaiming our authority over our son. Now, it's a child's nature to challenge authority as they grow, especially as they hit the preteen and teen years, so some of their behavior is just typical adolescent stuff. As they mature, they'll be able to handle more responsibility. But that responsibility should be doled out by the parents to the child as the child earns it, not ceded from the parent to the child for the parents' convenience or the child's pacification.
* Use their special interests to motivate and reward them (obviously this applies to kids more than adults). This is pretty self-explanatory. Use their special interests as part of their educational experience (for projects, reading, experiments, reports, etc.), and as perks earned for work well done or other goals met.
* Get some space for yourself. Having a child with special needs of any kind can consume your life, and weigh on you 24/7. Sometimes, in order to keep functioning as an effective parent or caregiver or spouse, you need to get away from them. I'm not talking for a few minutes here and there, although that's helpful. I mean take HOURS at least once a week, if you can. A few hours to go to the book store, take a walk, visit a friend, go out for coffee, go shopping, whatever you enjoy - go do it ALONE. Hire a sitter if necessary, but do it. You'll be much better off for the mental and physical space in the long run, and so will your family.
I could probably go on and on, but I'll stop here. Maybe I'll pick this up again in a day or two. You can probably tell that this post is being sparked by events in my own household lately - so I'm trying to take my own advice and clarify my own thoughts. And I've planned some alone time for Sunday afternoon - I can hardly wait.