Susan Senator

The concept of having children is without a doubt the best idea evolution every came up with. From the tickly narcissistic selfish joy of looking at how cute they are and thinking, “I made this!” to the rock-hard sedimentary layers of collective wisdom built up over time — all for the purpose of perpetuating the species. (Whew, chewy sentence.)

The former is an easy, lazy joy, best expressed by this proud little otter.

I wrote an entire book about both,  but especially about how to recapture some of this simple happiness and fun with your autistic child — and yourself.  Because that needs to happen — you only get one life and you deserve to enjoy it.

But having children is also the worst idea in the history of life as we know it. Because we don’t know enough about how to do it. The solid, dense, glacially-paced movement forward. How do we even do justice to that aspect of our child’s life, let alone enjoy it? The otter above might have an easier job. She has to just keep that baby alive and eventually kick him out of the nest or whatever they live in. He’s got to learn how to — what? Swim, get food, mate? Blessed with a less complex brain and world, they can combine both aspects of parenting and just go on their little otterly way.

For autism parents, though, our job can feel like a burden because it becomes so absorbing. It is such a hard job. (And no, not because of the kid but because of the lack of knowledge, lack of leadership in the professional community. And no, there is no way on earth or in hell that this challenge we face is an excuse for violence visited upon an autistic person. No, there is never a justification for violence as a way of dealing with a child, autistic or not. There just isn’t.)

This is not an anti-autism screed, nor is it an anti-autistics polemic. What I’m talking about here is one piece of our truth as autism parents: it’s very hard to know how to do it. A chip of my/our collective autism parent/caregiver experience that needs examination.

Considering it’s been 20+ years of the tsunami/broadening the boundaries of The Spectrum — whatever filter you use — I am still astounded and frankly, disgusted by the fact that all-in-all I still have no one to turn to but myself and a cluster of autism parents who approach autism kind of like me.

I can count the experts I would turn to on one hand. I love my pediatrician, but only for human body kinds of issues. When she refers me to people who “specialize in autism,” my heart sinks because I’ve already tried them or I’m just plain skeptical. If it’s a psychopharmacologist, I know his/her perspective is limited by a reverence for medication. She suggested a GI guy, and I learned why Nat gags sometimes, which led to a difficulty keeping on weight. But no other important underpinnings. If she suggests a neurologist, I know that an EEG or MRI are in Nat’s future, and that those are only useful for certain things which I just don’t believe are Nat’s problems. If she suggests a psychologist, chances are he or she will only know about behaviorism as a way of helping Nat. Behaviorism, ABA, whatever it’s being called today, can teach some skills but it’s not going to help Nat emotionally or communicatively. It leads the horse to water but it can’t make him understand that the water may not be healthy to drink. Or worse, the few people we’ve dealt with who were basically of the relational, rather than behavioral school (one was Floortime, one was the Miller Method), and ended up being shown up by Nat’s resistance to their charms/tricks/ignorance.

Now they have degrees in autism. Certifications. I’d really like to know where these universities got their knowledge. I’m sorry, I’m just so damned skeptical, which is what comes of being an old lone wolf, or at best, a feral member of a crazy hungry pack. I know there is bona fide helpful research like Organization for Autism Research or at UCSB. But I am just so impatient for more…

Your experience might be different. Maybe you found profound relief and understanding via GI analysis, medication, RDI, ABA, GF-CF removal, SI, PT, OT, QRSTUVWXYZ.  We did not. My understanding of Nat — like all of my children — was  gained mostly slowly, little grains of understanding at a time, until I had a layer of knowledge. But just as easily would be the sudden insight, the tectonic collision, the volcanic eruption that told me I was right or wrong and the landscape would shift dramatically. The problem is that with Nat it has sometimes been a matter of life or death, like when my other two were babies and could not tell me what was wrong. Was this fever high enough to go to the ER? How do I know if that’s a serious rash? Or like with my youngest, Benji, why did he not talk sometimes when I knew he could? (I’ll never forget the time when toddler Benji yelled out in frustration, “What’s in my head, what’s in my head?” His brain was so full, so quick, that he could not pull apart all his thoughts — and he knew it!)

One new frontier for our guys is typing, assistive technology. Ipad apps, phone apps, or like for Nat:  Facebook interactions.

For the long haul, however, the only things that have made a real difference in Nat’s development are time and education. And so here is my brilliant insight, the diamond in this rough distended metaphor: We all know that our guys have improved through their long years of education. We all know that our guys are developmentally delayed, i.e., their minds develop LATER IN LIFE. So why do we stop their education right when they might be having a breakthrough?

If we could extend the education mandate even five more years, our guys would have the chance to develop more skills. And maybe then, once they have blossomed a little more, we will understand them better, and what’s more: they will be able to do more for themselves.