Two Futures

My classically autistic Athena has a hard time communicating. She panics easily with too much human interaction. It’s hard for her to make her thoughts and needs known while the panic monster looms over her ready to pounce at any moment. She has shorthand language and pronunciations that only her family understand. As her parents, we have developed our own intuition about what works with her and what doesn’t. It’s rare to find anyone outside of our family who knows what affirms Athena or what increases painful overload.

For instance one example is, when a teacher saw Athena expressing herself by slamming things, hitting her head and screaming, she showed me how to deal with Athena’s “anger.” She asked Athena to show how mad she was by hitting a pillow. “How mad are you?” the teacher asked. “Are you this mad?” The teacher hit the pillow. “Or are you really mad?” She whacked at the pillow with more force.

The teacher told me that Athena would learn how to deal with anger better using tools like the pillow in the way that the teacher demonstrated.

Wrong.

During the teacher’s demonstration Athena cowered. To Athena, of course, anger means aggression and is a clear threat. To most observers, what appears to be Athena acting out in anger is actually Athena’s defensive way of dealing with internal terror. She creates backfires, noise, pain, anything to distract her away from the ensuing panic.

Why do I know this? Because I’m her mother. I had already tried the anger-outlet route. Athena hates to see anger, anyone’s anger. Trying to teach anger management to her only adds to her already skittish temperament.

I could be wrong on part of this conclusion. However, in this case, I was definitely more correct than the teacher was.

I didn’t bother telling the teacher about this. I’d been through that route over and over again. People are always telling me what to do with Athena. Sometimes the ideas are good but usually they’re not.

That was one example on how Athena is frequently misunderstood. I have many more examples. The scary thing is that nobody knows severely autistic children as well as their parents do. Unfortunately parents age. I am really hoping for technology to catch up with the aging process, put my brain into a cyborg so that I can watch over Athena and protect her for her whole life but, so far, no luck. If something like that does ever get invented you better believe that it will be created by the brain storming brilliance of a team of Asperger people who are nurtured and secure enough to follow their creative perservations.

We families with severely disabled children live in our own individual dysfunctional-functional cultures, whatever gets us through the day as peacefully as possible. There are many aspects of our little household cultures that are not socially acceptable.

For instance, Athena has a little ritual that compels her to taste everything that is on the plates of those around her. She also takes sips from each person’s cup or glass. She feels strongly about this so we gave up and let her do it unless we have company. Then we enforce rules that she keeps her hands off of anyone else’s food. I’ve often wished that we had more social situations where were could reinforce good behaviors but families with severely autistic adult kids usually exist on their own isolated private islands.

So with these two examples, about Athena’s expressiveness misinterpreted and her socially misfit behavior, let’s describe the two futures – one, a foster care system or something like it and the other, a community.

Future One – Foster Home/Group Home

When give up our adult children to the foster care system, they will be safe from health hazards and danger, according to guidelines, as well as it can be measured in an ideal situation.

Athena wants to touch everyone’s food. This is NEVER acceptable in the foster care system. It’s a health issue and must be stopped immediately. Athena would be upset and ashamed. She’d figure that she’s been bad. It could cause anger. She’d feel threatened. She be scared and act out her fears by hitting her head and throwing things. Her fear would be exacerbated because her care givers wouldn't be able to understand her communication style. So now we have a safety issue for her and her roommates. NEVER allowed. Athena, uncomfortable and out of control, would need some kind of restraint. Nobody has a road map on how to change her habits. It takes continuity, patience and resources that a typical foster home doesn’t have. She needs some serious micro managing and a lot of thought, along with a very necessary consistency from care givers. It takes a lot of intuition and drive to try to figure out how to get her to change. She also needs a LOT of affirmation that she's a good person. She gets mad at herself a lot and needs constant reassurance.

How can the foster care system do that? Care givers are paid so little and expected to do so much.

So Athena would act out in unsociable ways. When she became too extreme, drugs would be given to her for her own safety and the safety of those around her. If there are unpleasant side effects, her reaction to them could be interpreted as just random autistic behavior. She would be less and less in control of her own life. In the end, the best case scenario would be a mostly docile zombielike person whose goals are to smile, be clean and take your meds until you die.

We also couldn’t prevent her from getting into a bad home that slipped through the cracks. The mental damage could never be undone.

Future Number Two – The Awesome Awe-Tistic Community Future

Our family moves to a community where we frequently interact with others who work together to understand, appreciate and affirm each of our individual quirks, talents and unacceptable behaviors. We work together to enhance community harmony and productivity because we all have a stake in it and a good understanding of each other’s needs.

Time passes. When it’s time for Athena’s parents to die, we’ll know that Athena has lots of friends who know who she is, underneath her hyper-aware responses. She has learned how to interact much better in social situations and feels fulfilled in a life full of art, music, animals and people who don’t scare her. She brings her own eccentric art talents to the mix and, who knows what other creativity can emerge in that kind of situation?

My husband and I could have the luxury of relaxing in our old age, interacting with our daughter without worry and really enjoy our golden years.