Over the holidays–which are a traditionally rough period in many homes– I have been contemplating the issues faced by individuals with the form of autism formerly known as Asperger’s, at this time of year.
Even discussions of language surrounding discussing this are fraught with pitfalls. For example, my loved one with autism prefers to be called an “autistic” person rather than a “person with autism”, which is the lingo heavily touted in the professional world. Why? Because his autism is such a pervasive, central fact of his life he feels that calling him a “person with autism” would be like referring to him as a “person with an x chromosome and a y chromosome” rather than a “man.” It is a point to contemplate. I am not sure all the (expensive) professional time spent on such issues is useful. I think that, in the professional world, we are shooting in the dark and missing all the targets. What we need is light. And, that light cannot come from us. It has to come from them. The autistic persons.
I left a position in the professional world of ASD last April, for various reasons, many of them monetary in nature. I just couldn’t afford that job, anymore. But, I was privy to various professional contacts and situations there and in other positions in my professional career. I became ever more deeply convinced that we are barking up the wrong trees, and barking ever more loudly, when it comes to ASD.
I am more and more concerned with perspective as those I love continue bravely to push out into the world. And, remain themselves. And, remain true to who they need to be instead of who the world of NT’s (neurotypicals) needs them to be.
One thing which happens over and over in households and classrooms and workplaces and parks and movie theaters and grocery stores and restaurants and in the middle of the street where autistics are is, crisis. Living with a loved one with ASD means living with what I would call about a 98% rate of crisis. In other words, for every 100 days, two of those are absent crisis of some kind. This is the reality. It is difficult to comprehend. Yet, in the professional world, I saw more and more often a suspension of belief over this, a turning away from it, an ignoring. Lots of cognitive dissonance. Lots of wasted time, and some of it downright offensive to the people (me, for example) who live with this. Many professionals spend lots of time talking about how the parents or spouses or grandparents could be doing things differently (if I hear the term “helicopter mom” one more time I may lose it) as judged by a person who goes home every night to a typical household. Since I have been in this job, I have gotten phone calls from professionals who want to talk about how the parents are doing it wrong. How, I ask, do you know?
Professionals must, absolutely must, begin to accept the hardships of the families with autistics in them as real, and honor that. Allow the families to be who they actually are, and quit judging them so harshly. Begin to understand that the crisis mode is not a choice. Work from there.