Yes, Jewel “looks normal.” Yes, I am sure she is autistic. How do I know? It’s not about all the medical and educational assessments that have been done over the last eight years … it’s because she tells me how she views situations and her reactions, and it is not through a neurotypical lens. I am lucky she is verbal. She is SO verbal.
Years of social thinking services have made her very aware of what is expected of her, but it hasn’t, of course, changed how her brain works. So she will go up to the woman in the pool at a club (she likes adults better as audiences) and start dropping the names of her school friends and situations and keep talking. And the woman, who came there to be with her own family, sends all the social cues most of us take for granted (“mm-hmming,” turning her back to be with her own child, etc.), but Jewel has pressed “play” and play means play until the tape is over, period. I intervene, but she is going to have to learn and work hard at her give-and-take conversation skills; they are not innate to her.
There are two choices: we stay at home and never come in contact with the outside world to avoid the possibility of awkward situations, or we venture forth. We’ve embraced the latter. But it takes planning and front-loading. Disneyland and Knott’s Berry Farm offer a “fast pass” of sorts for autistics and others. Everyone hates waiting in line; that does not mean everyone is autistic. For Jewel, waiting in line represents all of her sensory overload, fears and anxieties in one not-so-neat package. She has no control in an environment that could include piped-in and loud music; musty-smelling, grimy and overused paths, close proximity to people (Jewel’s particular pet peeves include a completely un-PC disdain for white-haired, “old-fashioned” people and those “with no fashion sense”); all types of voices and languages being heard and NO ESCAPE. Her sensory issues compel her to deal with each of these events separately and with great consideration. Over time I have learned when to “fish or cut bait.” If someone starts to whistle too much or passes gas (seriously, Jewel is the human equivalent of a doggy bomb sniffer, nothing goes undetected), we are so out of there. So these “fast passes,” which give us a time to come back to a certain ride, have worked well for us. It does cause delayed gratification, but it means we can go and enjoy such places.
Everything we do in public is with an eye toward going at the least crowded times and having an escape plan. If I spend half an hour looking for parking, I have lost half an hour of the “honeymoon period” of anticipation. I am a deal fiend; I don’t pay full price to go and do anything, because I know there is a possibility we might have to cut and run, and I hate trying to weigh wasting money against Jewel’s needs.
We venture forth, because Jewel needs to live in this world and learn to be a part of it. In the words of the great George Costanza, “We’re living in a society.”