We stride through uncharted lands full of landmines

As parents of autistic children in the 21st century, we owe a great deal to parents in previous generations. They were the ones who fought the battles to keep their children at home, rather than see them institutionalized. They pushed for better diagnostic criteria. They sought out better understanding of autism, so that doctors would stop calling it “refrigerator mother syndrome”, amongst other subtitles. All the early references to autism were so incredibly negative that it’s not hard to imagine the despair that must have been felt when such a diagnosis was made.

Of two cousins in my family with autism, one cousin is now in his fifties, and has been living in group homes his whole adult life. He started life with hydrocephaly, “water on the brain”, and suffered some brain damage as a result. He was diagnosed autistic as an adult. Now, we look at such a case, and think to ourselves, all that time lost. Certainly, if anyone had made the diagnosis earlier, he could have had a chance to be at home. Moreover, he could have shown his parents that they were not to blame. Guilt pervades the entirety of the parental community, evidencing itself in myriad ways. I feel that the typical model of guilt is the parent who spends time looking for causality, blame, or cure. It is unhelpful, for instance, for parents to see Jenny McCarthy smilingly promoting a “cure” for autism, knowing that she was financially capable of seeking hundreds of options for her son; it’s a disservice to ignore all the other treatments in favor of a simplistic, and scientifically unverified life change. I know that’s going to irk some of you, but this is how I feel; we all have to make decisions for our kids based on what we feel is right or wrong. That’s what this is all about.

The other cousin is now twenty. He lives in the midwest, still with my aunt and uncle, on the family farm. Because the state in which he lives has been committed to interventions for school-aged children, he thrived, year-round, with a full-time aide, mainstreaming, summers covered by university students, and respite care, not to mention health benefits. All this was paid for by the state, which is fortunate, since my aunt and uncle have no insurance for themselves right now. My uncle hasn’t seen a doctor in fifteen years or so, and my aunt was recently diagnosed with Wegener’s Disease. The situation is especially alarming, given the history of heart disease in both my grandparents, as well as my grandmother’s diabetes. Since graduating from high school, my cousin has slipped into the shadows of a once-supportive system. He is able to be covered by Social Security, but if something happens to his parents, what will happen to him?

Autism, as you can see, is both a silent occupier of our society, as well as one that is becoming more urgently loud.

I’m a parent as well, and I plan on fighting for my son to be college-ready. I see a future for him where he can choose a field of study, and modify a career to fit his comfort level. I listen to autistic adults who feel that autism is just a “different way of being”, and I feel a little irritated about that, because the implication is that some of these adults want to be left alone, and not have children put in interventions. I truly disagree with that; here is why. Everyone who is able to is expected to make his or her own way in this world, sometimes with accomodations, sometimes fighting to stand on his or her own two feet and find a way to make it work for them. I would be ashamed of myself as a parent if I sat back and allowed my autistic son to get away with everything, while expecting his younger brother to do differently.

I say to these autistic persons this: So it’s uncomfortable, and feels like you’re being pushed to do things you don’t want to do. Do you believe for one minute that the rest of us go to work every day because we want to? Do you think that the men and women who work menial jobs, minimum wage, and who struggle to feed their children LOVE or even tolerate their situation? They do not. They go because they must. Life is a struggle. It’s unpleasant for many people. The trick to surviving in this world, for ANYONE is to find the things that bring us small moments of joy, and make them what we fight for.

Lots of us who are parents of children on the spectrum find ourselves navel-gazing, which is a metaphorical look at the definition of autism. We find that we start thinking that we too must be somewhere on the spectrum. For me, it’s things that others find silly. I have to have specific types of socks; I hate cotton, and can’t stand the sound it makes as it goes over skin. The sheets on the bed must be taut, unwrinkled, or I tug, tuck, and restlessly lie awake. I’ve always disliked being touched excessively. Too much noise from people talking or shouting is enough to drive me into a closet. It’s actually gotten more pronounced as I have gotten older, which is, I think, something that could fool me into believing it has its own will. The only thing that has changed in my life that would enable these quirks to grow is that my family and I have gotten more isolated. While I hate talking on the phone, I know that I used to do it often, and without qualm.  I used to go out, and enjoy being around loads of people. This leads me to believe that it is a self-feeding situation. That it gets easier or harder depending on the choices an individual makes about his or her future.

We’re still in unmapped territories. Nobody knows what the face of autism will look like in fifty years. My husband thinks, for instance, that it’s possible autistic people will save the world. I wonder whether my two sons will come together in their two halves of opposing strengths and do something mindblowing together.

There is no make-a-wish foundation for kids like ours. Autism isn’t terminal, or even terrible. It’s just a struggle, for everyone involved. We all have to work our butts off to accomplish anything. And because there is still such stigma attached, because there are idiots and jackasses who call autism “imaginary”, or “bad parenting”, the parents still suffer, while we try to shield our children. Some kids on the spectrum are painfully aware of the things that others will say; my son is blessedly oblivious for now. He looks like a typical kid most of the time, only evidencing some of his behaviors when he’s excited or upset. It’s then that we get the double-takes. I have read about so many horrible and cruel encounters between parents and the general public. I know we’re fortunate, because we seem to only come across folks who immediately know what they’re seeing (although I suspect that’s largely because we tend to behave as though we’re unflappable and know what we’re doing – an old military trick). But I admit to a twinge of jealousy, maybe, or something less nameable, when I watch Little People, Big World and Jon & Kate…, and see that, because their situations are visible, understood, they’re getting something because of it.

Nobody would make a show about us, or most of the families who live with autism. We live in an undefined, confusing, and controversial world. I have the feeling that a family who would get filmed will fall into the prevailing culture of autism and “cureism”, leading the rest of the uninitiated to believe that we all feel the same. I do feel a little differently than others do; I know I’m not alone, though. Lots of folks have confided in me that they feel the same, and it’s always with that same sense of relief, that they’re talking to someone without feeling as though they’re on eggshells. This is the current state of things. This is where we are. We cannot seem to agree on where autism originates, what treatments are best, whether some are misguided or dangerous, or even what to call the whole thing.

I have no friends who are parents, nobody that I talk to, because I feel isolated. In this isolation, I have talked to professionals, mainly, which is how I have come to feel so strongly the way I do. Even my husband gets caught up in the froth of new and bold announcements, and we inevitably have the hashing out session, where we try to get to the heart of whatever it is, and decide whether it has merit…or is another genie in a bottle. We’re all alone, at one time or another, left to stare at our shivering selves in dark mirrors, and wonder what went wrong, where did it go wrong? It’s the question that is wrong, however. I don’t begrudge anyone holding out hope, wishing that a diagnosis might be reversed one day, praying that some wonderful treatment will be proven out. I just can’t see myself putting my child through things that I doubt. I would have to have nothing less than absolute faith before I let him be put in the role of testee, because of the rather grim history (we should all be aware of) of subjecting “different” human beings to grotesque medical experiments. We should all be cautious, and be cynical for our kids’ sakes, and be willing to put on that battle armor against anyone looking to make an easy buck off of us.

We have an autism community that is at war with itself. There will be no true progress until an accord can be made.