Self-Definition: The Right to be Bobby

Wednesday, Bobby and I took off from our respective normal routine (me teaching and him working the dishwasher at Meals on Wheels) for the opportunity to watch John Elder Robison speak. 

I told Bobby that Robison had Aspergers and had written a couple books and blogged and traveled the world speaking about autism and what life was like for him. We had seen Stephen Mark Shore last year, and that had been interesting, for several reasons. Last year, I introduced Bobby to Shore, and we disclosed Bobby's autism, and that the girls were also on the spectrum. Bobby had been annoyed at that disclosure, even though we were talking to a fellow autistic. I pondered on that then, but let it go.

This year, I asked Bobby if he wanted to meet Robison. He looked at me, that gorgeous smile disappearing, and a frown taking its place. "No." I didn't push. I can respect that. After all, we'd both walked rapidly into the building, bypassed the tables, the swirling crowd of people, we'd found an empty table to the back of the room, at the far left, as far away from the crowd. Even though we knew several people there, we sat and chatted quietly, drinking our coffee we'd brought from home. After a minute or two, both of us had our phones out and were involved in our electronic media, heads down, avoiding eye contact with the people rapidly filling the room. Our table filled with lovely young college students, and Bob's head dipped deeper--surrounded by vibrant young ladies chatting away. I noticed the peeks he made, though, out of the corner of his eye, rapid darting movements. He might not have engaged, but he sure was aware that there were pretty girls around.

As we sat there, waiting for the event to begin, my friends found me (pink hair will do that), hugged me and exchanged greetings. This was our first time in a few years for us to be there as audience rather than volunteers, so it surprised them that we had essentially snuck in and found a spot out of the spotlight rather than mingling. I don't think they know I hate mingling.

Robison entered the conference room and paced the perimeter, waiting to go up and speak. He didn't make a lot of eye contact, didn't look around much, as his lovely photographs kept popping up on the projector screens. When he began to speak, his voice boomed out, loud enough that it hurt my ears. He's an engaging speaker, and it was obvious that Bobby enjoyed listening to his stories about growing up and all the cool jobs he'd held, but there were times Bobby and I would stare at each other, surprised, disappointed, disbelieving about what Robison said: autism at 5, 6, and 16 sucks--there's nothing good about it. 

Does it? Did it? We studied each other for a moment, then turned back to watch him, chewing on it, holding it for later.

Robison was speaking at a Church of Christ private university, so he tailored his speech to that audience--why would God give a mother an autistic kid? He asked that several times in his 90 minutes, and offered stories, his growth, how he'd learned to adapt and fit in better to the neurotypical world, how he'd had success. Bobby and I again looked at each other askance and I thought about some of my internet friends and inspiration porn, how they'd be furious that he was using autism, his autism, my kids' autism, as inspiration porn. I pondered on that. As he finished the morning presentation, he concluded that the answer to the question of why God would give parents an autistic kid was so they could be inspired by the success, the growth, that their kids could have.

I think Bobby and I both groaned at that point. I know eyes were rolling. Um, no.

At that point, it was time for lunch--a gluten free baked potato bar--we'd had that last year--Bobby said no. He was, as was I, overwhelmed with the thought of navigating hundreds of people, the chit-chat and socializing that would be expected for the two hour lunch before Robison spoke again. We'd already had some chit chat and introductions with the young college ladies' professor, who had sat down beside Bobby an hour into the presentation, and I'd already seen that he wasn't going to go for talking about his autism. That smile that intermittently lit up his face kept slipping to frown, and at one point he turned to me and said, "I'm just Bobby. I don't have to be anything else." 

We ducked out, heads down, and left by the closest exit, avoiding the throngs of people heading the other way. As we were leaving we ran into another friend who was on her way in, and spoke briefly before sprinting, well, as fast you'll get me to move, to the car, so we could hit Sonic before coming home, where we'd both agreed we'd rather be.

On the way, we talked about Robison's talk, about what we liked, about what bothered us, was it true that autism made 5, 6, 16 suck, that there was nothing good about his Bobby's life at those ages? And the whole God thing--Bobby immediately blurted out that was a stupid question--he got his autism, the girls too, from me and his dad. Duh. Why would anyone ask that?

I think we concluded, as rationally as possible, that there were definitely things that sucked for a person who couldn't meet the demands of a world not structured for people who couldn't blend and adapt easily to the social demands, but that didn't mean that life necessarily sucked. Autism is about more than social demands, though, and no, it isn't easy to be autistic in a non-autistic world. Not easy doesn't necessarily equate with sucks. What a message of non-hope, a call to non-action, for young parents--it's gonna suck and there's nothing to be done about that? 

I wondered if I was being defensive in weighing this so much... I was tired, scared, worried, frustrated when he was 5, 6, and even 16 (but that was mostly because when he was 16 the girls were little). My life didn't suck, though, and I don't think that his, on balance, did either. It "sucks" when you constantly fail, yes, as Robison talked about--Robison didn't have a childhood that was good--but that doesn't mean that everyone's life will suck--that the common experience of autism as a child is suckiness.

I hope it doesn't, at any rate. I think that all parents grappling with how to help their children succeed, be happy, be safe, are hopeful, believing that their efforts can make a different world for their kids. I know I work hard to make sure it doesn't for my kids, that their environment is tailored to their strengths, that their challenges don't spend so much time front and center that that's all we see, all they see. 

And it isn't about changing them so they "fit in." For heavens sake, fitting in is overrated, says their now purple haired mother (pink for a month was enough).

I've come to realize that a lot of what's behind my embracing ever-changing hair colors, developing my own distinct style, and owning my eccentricities is that I want my kids to embrace themselves, who they are, to not worry if they stand out in a crowd. In fact, they should delight in their uniqueness and never apologize for it. Ever. They should reject the idea that their life is going to suck. 

Life is what they make of it. They don't have to wait to their forties to discover that, to embrace themselves, to find ways around the things they can't do, to not be shamed because they have weaknesses.

Self-definition, as I've watched my son struggle to articulate, means just that: the right to define who one is, what characteristics are important as identifiers. For Bobby, that means he gets to reject adjectives, modifiers, clarifiers. He is Bobby, and by gosh, that's enough, enough for him, enough for me. What a wonderful thing to be, to know who one is especially at the tender age of 23. 


farmwifetwo said...

Autism for the parent may suck at those ages but I can guarantee you it did not for them. It is my job to tackle the world so that their lives are 'normal'. To quote Mercedes Lackey 'children should live, laugh and play' and I take that very seriously. Seriously enough we shocked the ASD teacher at the eldests last highschool PDT mtg.

Can I keep it going into adulthood, I don't know. But come and visit and you'll discover a normal family. Autism isn't who we are. Like Bobby, we have our own names and that's who we are.

scintor said...

I avoided the potato line as well in the blinding-bright, loud and crowded atrium as well. Not exactly a sensory friendly environment.

K Wombles said...

fw2, absolutely! Live, laugh, and play is a motto to live by, as is being ourselves. :)

John Mark,
Tell me about it--every year I end up with a horrible migraine from all the fluorescents, as I did this year, again--I simply can't do it all day. Ended up spending my afternoon sleeping it off. At least at my work, I can keep the lights off in my classroom and office, and only deal with fluorescents in the hallway.

John Elder Robison said...

Of all my talks you could have attended, I'm very sorry it was that one because it was so different from what I usually do. It's very rare that I am asked religious questions, but in that place I was.

Prior to beginning I was asked those same questions by several parents in the audience. I addressed them as best I could, but it's not what I am known for, and I can see that was not what you had in mind at all.

As for autism being purely crummy for me as a child . . . that is how I perceive it. However, as I tried to express, the same things that sucked at five facilitated some significant advantages developing when I was twenty. In the end, being autistic and different made it possible for me to achieve the success I found in music, photography, and cars. I thought I made that point, but perhaps you found the manner in which I did so offensive.

Best wishes

K Wombles said...


Thank you for taking the time to read and respond. I'm sorry if I gave the impression that I was offended; I was not. Your talk gave my son and I a great opportunity to reflect on autism, on self-definition, on a lot of things, and while I still admit we were disappointed that you communicated autism sucked, we can both understand and respect that your childhood did suck for you, and that it does, indeed, do so for far too many individuals.

Having an early diagnosis helps, I think, alleviate the distress--some answers are forthcoming, a reason for one's differences is there, and workarounds can be found. When parents and the adults in a child's life are attentive and receptive, children can avoid a lot of misery.

We found your talk illuminating and of value. Bobby was able to watch you and listen to you and see some of himself in you, and he was able to see that there was hope, that there was continued growth and development, that who is at 23 is not where he'll remain.

I wish parents had not asked you that question. I wish they didn't regard autism, or their children, as something requiring an explanation of why God would do that to their child or to them. There's no good answer to that question, no answer at all to that question, and as such, it ultimately is a private, internal conversation and decision. I was delighted to see my son reject the premise and that he also recognized himself in his father and me. There's not a thing wrong with being BAPpy. :)

I know that there are families who derive comfort from the thought that their disabled relatives are here to teach us something, but I personally don't think that any of us exist to teach another person something--our value does not, nor should it, derive from what inspiration we can be to others.

Bobby is under no obligation, nor are you, to defend your existence by being inspiring. You are you, and your value as a human being shouldn't be tied to something someone else chooses.

We are glad we came and listened to you; there is always value in the exchange of ideas and stories. You gave us both much to think about. You can't do better than that: you invited thought, reflection and discussion. Thanks.

Anonymous said...

I finally did truly realize that NOTHING sucked about being autistic at 5, 6, or 16, EXCEPT for the not being able to live up to unreasonable and non-reality-based expectations and demands imposed on me by others. Nothing at all sucked about being autistic...what sucked hard was being expected (threatened/coerced/shamed/abused) to be and function as something I couldn't be.

I agree with Kim--no one's value derives from the inspiration they provide to others. That's not a kid's job, autistic or not. I don't see what the problem is with believing that God puts autistic people on earth simply to live the most full and joyful lives possible as ourselves.