Tuesday, February 15, 2011

What is it about autism?

As some readers here know, I've contributed to an anthology about autism parenting called, Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum (which, by the way, is a finalist in the "Special Needs Memoir category" at about.com; please feel free to log a vote for it). Part of the genesis of the title was that one of the editors recognized how autism intractably drew in her and her family, and she is not alone. My own piece, "String Theory," even uses Newton's Law of Universal Gravitation as a metaphor for how autism and my powerless love for my son keep me in sway.

It's understandable that parents of autistic children would find themselves helplessly in autism's pull. I'd hazard that most parents find that the ineluctible attraction of their children awakens a deep, dark, and sometimes frightening core that slept undisturbed in their pre-parenting salad days. That applies, autism or not. But what is it about autism? Why does it seem to draw in others who are not autistic or not autism parents or even family members. What is its attraction?

I'm aware of several journalists who found themselves in autism's orbit and now seem stuck there, satellites to its gigantic, overwhelming attraction. They focus on many aspects of autism, from highlighting autistic people who do amazing things to deconstructing the myth of the autism-vaccine link to tearing into the false assumptions underlying many biomed treatments. Once it's pulled you in, you can't ever let go again. I can tell they're stuck, digging into this mystery of our brains and behaviors, trying to see behind that curtain.

These accomplished journalists and writers and storytellers feed a public mind that also seems unable to get enough of autism, or at least of worrying about autism. Every fifth health headline includes the word, as though it were an eyeball magnet, a click magician that will pull in anyone, no matter how trivial their real-life connection to autism might be. Maybe it's an expectant mother, wondering throughout her pregnancy if her child will become part of the alleged "epidemic." Maybe it's an anti-vaccine crusader, hoping for confirmation of her own biases. Perhaps it's a parent of a young child with autism, seeking more information about what makes his child tick...or some way to make the autism go away.

But it's not going away, is it? Some days, I get sick of autism simply because it tugs at every aspect of my life. It's been the common force in our family life, our parenting, our relationship, my work, my avocations for so many years that indeed, there are days that I'd like a bit of an autism vacation.

While many autism parents would like a break--desperately need a break--for more fundamental reasons, I'm not looking for a vacation because of my son. In early years with him, yes, things were rough. Rough for him, rough for us. Hard before we knew that he had autism because we just couldn't figure out why he behaved the way he did, what triggered his sobbing, helpless meltdowns, why he wanted to sleep with a boiled egg or an acorn. Why one of his greatest pleasures at a very young age was waking in the morning and finding a clean, smooth avocado seed waiting for him on the kitchen counter. We knew our boy, obviously, because we left him those avocado seeds, but we didn't know what autism was.

Then, specialists flipped on the spectrum switch, and we got sucked in...permanently. There has been much angst and heartache--maybe a lot more than a parent of a neurotypical child would ever understand--but there also have been the most profound realizations, moments of the most innocent beauty, none of which I'd trade away.

And it became an obsession. He's our son. Of course, we're obsessed. Our primary focus is simply his well being, his acceptance of himself, and giving him tools that will help him become and remain functional. Parents with autistic children like ours differ from other autism parents in that we have breathing space: We are obsessed with our son and with autism because we volitionally make it our focus, not because it demands our focus, unceasingly, all hours of the day and night. Yes, autism pulled us in at first, and we had no choice. And yes, our son is autistic, but we're now willing participants in the gyre, not fighting what we encounter there...much. For parents whose children have much more intense autism, they're stuck in that whirlpool of emotion, unpredictability, fear, and the unknown, and it can be a nauseating ride.

Recently, I participated in a conversation on Twitter in which I observed to a parent that we're doing well around here because our son is happy, not experiencing a lot of anxiety. The parent (also of an autistic child) responded, "So?" There were other things this parent wanted, like their child to be able to play with other kids, interact with others, have a conversation. The child is four right now, and I wanted to make promises about development, about how those early mysteries can sometimes fade, that children--even autistic children, yea, verily--grow, develop, move forward. That our own son, at age 4, age 5, 6, 7, gave us no indications of what he'd be capable of doing today, at age 9. We never would have predicted his successes. The parent observed that what I described sounded like "cure." And I knew I couldn't make those promises anyway because...no one can. No one knows what the future of autism is for any single autistic child.

With that "So?" and that "cure," I realized something that maybe others quicker on the uptake than I had already grasped: Autism pulls us in--parents, autistics, journalists, doctors, quacks, snake oil peddlers, Jenny McCarthy--because it is a legendary mystery of enormous proportions, in part because of perspective. It's not a monolithic puzzle to piece together, the way Autism Speaks represents it. It's a complex, unsolvable conundrum, and here's why:

No one sees autism the same way. No parent sees their autistic child in just the same way as another autism parent. No autistic person sees autism in the same way or experiences it in the same way as another autistic person. Investigative journalists can't resist the attraction of a celebrity mystery of this size and depth, one that has scarcely begun to be unveiled. We can't even agree on what a "cure" might look like, or even about wanting one. And possibly the one that baffles me most, given the current realities, we can't even agree on acceptance.

With its Janus-like qualities, showing us only a past we can scarcely understand and wrapping the future in an impenetrable fog, autism has stepped into the pantheon of one of the greatest enigmas of our time. Is it good? Is it bad? Where does it come from? How do we feel about it? Who really has it, and who's just eccentric? What, fundamentally, defines an autistic person? Will the world ever understand autism, and with that, accept it?

The human mind loves a mystery. One look at the New York Times bestselling fiction list will tell you that. What we do not like is when the mystery goes unsolved. That drives us higher apes insane, and it is that--the apparent unsolvability of anything about autism, its resistance to any tidy categorization in any way--that keeps us there, captured, turning and turning in its ever-widening gyre.

17 comments:

lynnes said...

I've been thinking about the obsessive aspect of autism with respect to myself for awhile now. My husband is a recovering alcoholic and as part of the process of recovery I've been attending alanon meetings and learning about my enabling/co-dependant behaviors. I've found a lot of correlations between my relationship with my husband and my parenting of my autistic child. Not so much in that I want to fix him or do-for him (although that is something of which I have to be constantly mindful) but that I think and obsess over alcoholism and autism for the majority of my day.

It's sucked me in. When I'm not with G, I'm constantly reading, researching and planning how I can help G meet new goals. It's a necessary aspect of parenting on the spectrum, but I take it to unhealthy obsessive levels. So I've started forcing myself to develop interests and hobbies that are more selfish. I go snowboarding with a girlfriend once a week - where we often talk about our kids, so it's only partially successful. I take a yoga class - that happens to be run by our OT, again not a complete success. I read craptastic romance or fantasy novels with happy-ever-after endings and no hint of the challenges of real life.

I recognize the need to tear my self away from autism for short periods of time so I can return refreshed and with the proper perspective of our life. It's just a lot harder to put into practice than I'd anticipated. But I think without forcing those breaks, it's easy to get so overwhelmed by the challenges that it becomes impossible to be anything but pessimistic and angry. And that's dangerous ground.

C. S. Wyatt said...

Depending on events beyond my control over the next month or so, I'm likely to break away from autism-related research permanently. The simple budget realities of universities are ensuring I consider other career paths -- not easy for anyone, but particularly difficult for some us.

Leaving "autism" the research field behind is something my wife is hoping happens. The arguments, the hate mail, the general nastiness of some people, would be a much smaller part of our lives. I understand she would like that a lot.

But "autism" the personal experience would still be part of my life. I'd still be balancing my personality and physical traits against a work environment. I'd still be trying to adapt to situations, knowing they will not adapt to me.

I don't mind reducing the role of "autism" in my daily existence if that is what the future holds. It might be less stressful, strangely enough.

sharon said...

This is a great post Emily. I have only recently been pulled into the Autism orbit, and I too am now hooked. Spending much of my time reading or thinking about it. My son is only 2 and is high functioning and I suspect this fact allows me greater space for contemplation than those who feel as if they are in the trenches from the time they wake til bed that night.
For me it is just so enigmatic, as you point out. The variation in presentation alone makes it fascinating. Also as an NT, from my perspective it's not really knowing how my son sees the world. I can't project, I can only wonder.
I spend much of my time considering how I will extend my involvement within the ASD community once Harri is older and I have more time available. My husband always says I love a cause (I am a former social worker) and with Autism I think I have found a cause for life.

KWombles said...

Wonderful post.

Corina Becker said...

First, I want to say to Lynnes, good for you. Everyone needs time off for themselves, we all can't be working all the time. And as a fellow fantasy reader, I'm squashing the urge to ask you what you're reading :D

As for this article; there is something about Autism that grabs hold to people. I think there is a bit of fascination for a part of humanity that, in some ways, is an extreme form of humanity, encompasses the diversity, strength and weaknesses of humanity, as well as our own range of experiences. In a way, it brings out a little bit of autistic obsession in us all.

As for me, I'm working with the obsession, and my own strong sense of justice, to learn more about disability rights issues in my country and do what I can to help my community make changes for that Autistic families can access supports and such.

TherExtras said...

The best part of an excellent post:
"one of the greatest enigmas of our time. Is it good? Is it bad? Where does it come from? How do we feel about it? Who really has it, and who's just eccentric? What, fundamentally, defines an autistic person? Will the world ever understand autism, and with that, accept it?"

Core questions that provide a gravitational force. Barbara

lynnes said...

@Corina - I'm currently re-reading Nalini Singh's Psy/Changling series. It's the perfect blend of fantasy and romance for me. :) Do you have any recommendations?

Daisy said...

Happiness: isn't that the goal most parents have for their children? That piece doesn't change when the child has a disability - or two or three.

Domestic Goddess said...

Darn. You are so dead on. Especially this part:
"And possibly the one that baffles me most, given the current realities, we can't even agree on acceptance."

Spot. On.

Mystery indeed. And one I'm not sure ever needs to be solved, really.

Springingtiger said...

As a late diagnosed Aspie - with our tendency to develop obsessions - I had no chance of escape when I discovered autism. It's a more useful obsession than many, but it can be totally absorbing. My wife makes me do other things too, which is just as well!

Call me Eric said...

I enjoy reading your fantastic deep and smart blog. I rarely comment though, except this time to tell you that I love this post.
Thanks for sharing these thoughts with us.
- Eric aka @myautisticson

J. Lorraine Martin said...

What a fantastic read! Thank you!

theconnorchronicles said...

Nice post. We too are sucked into the autism universe. Some days we walk on eggshells, others we are over the rainbow, and both are dependent on my son's mood, which is directly related to his autism. And if I read one more autism book...ugh!

Danna Banana said...

"For parents whose children have much more intense autism, they're stuck in that whirlpool of emotion, unpredictability, fear, and the unknown, and it can be a nauseating ride."
Thank you for taking the time to articulate this thought.
It brought tears to my eyes. My auties are now 15 and 12 and in a group home together.10,000 hours of therapy for each of them has been a grueling endeavor. Oh how I wish it had been enough to allow us to be at home together.
But the ride just doesn't stop.

Emily said...

Ah, Danna Banana...of all of the comments this post has received, here and elsewhere (and as always, thanks to all commenters for taking the time to do so), this one hits me most. I sometimes hesitate to write about my son or to talk about anything we think of as difficult because I know there are parents out there with autistic kids who have to make heart-breaking decisions like yours every day, and we do not. I'm so sorry you can't all be together. I know everyone's pain and experiences are relative, so I don't diminish some of our own pain, but just know that I empathize greatly with you and other parents in your situation. I'm so sorry. I hope that your auties are happy, at least, together and where they are.

Danna Banana said...

Thank you Emily. My boys are doing extremely well. Thank you for asking.

K- floortime lite mama said...

AMAZING post
Gosh I cannot believe its taken me so long to find you