Tuesday, November 19, 2013

Raising Cubby: An Interview With John Elder Robison



John Elder Robison's book Raising Cubby is a must-read for unabashed geeks and parents alike. His wry and affectionate memoir describes, in part, what it's like to be a late-diagnosed "Aspergian" raising a son who, it turns out, is also Autistic. But the book's strongest themes are Mr. Robison's obvious delight in parenting, and his determination to help Cubby thrive (which he has) despite friction with the educational, and later legal, systems. We spoke with Mr. Robison about various elements of Raising Cubby, as well as his next steps as an advocate for autism science and research now that he has left the Science and Treatment boards of Autism Speaks.

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One of Raising Cubby's primary themes is Autistic parenting of Autistic children, which is not something we hear a lot about in the media. How common is it, in your opinion, for Autistic kids to have Autistic parents -- whether or not those parents are diagnosed?

With all you read and hear about the hereditary nature of autism, I’m always surprised people ask that question. It’s always “some other family,” where the autistic dad has the autistic kid. Never yours. Or mine.

I can’t tell you how many times I have met a parent – obviously on the spectrum – and had them say something like, “I have no idea where little Zack’s autism came from. Not a trace in our family!”

To look at that more seriously, I think it’s common for autism to be concentrated with subsequent generations. My dad was less autistic than me. My son seems to have more trouble with organization and executive function. So maybe he’s more autistic. Maybe it goes the other way for the next generation. Or maybe not. No one knows.

All we know (from legitimate scientific research, not just my own observation) is that autism in the parents is predictive of autism in the kids, just as having an autistic older son is predictive of younger kids having autism.

When we look at our father’s generation – if they were functional enough to get a job – autism just would not be part of the conversation. Look at me. I had no idea what Asperger’s even was until my son was in second grade. Even then, it took some years for me to learn enough to realize he might have it too.

What you read about in Cubby is not a knowingly autistic dad raising a diagnosed autistic son. You read about a dad who saw his own childhood failures acted out anew in his son, and a dad that tried to help that son based on his own life experience. Autism wasn’t a word we used until much later.

I think that situation is very common, but not talked about either for reasons of ignorance, shame, or something else.

Did the lack of such books -- Autistics parenting Autistics -- influence your decision to write Raising Cubby?

I just felt it was time for a father’s story. There are lots of mom memoirs but very few firsthand tales of fatherhood.

I never really thought of Cubby as an “autism book.” Now that I see how different my style of child rearing was from the average dad I just thought I might have something useful to say to anyone raising a kid. After all, every dad wonders what to do with his kid on the weekend. Every parent wonders what to say when their kid says, “Where did I come from??  I answer all those things, and more.

Do you have any specific advice for your fellow Autistic parents, in terms of dealing with neurotypical parents in social and other scenarios (school etc.)?

When Cubby was little I sometimes had occasion to talk to parents of other kids.  That was difficult for me because engaging them made me feel so different. Many of those parents were focused on “normal” jobs, where they worked a regular schedule, had vacations, and – most notably – got a weekly paycheck. I was a self-employed car mechanic with none of that structure. I always felt that they looked at me as some kind of alien creature.

A few years later I began meeting people at day care, and then at Cubby’s schools. Day care was ok, because it felt like a big playpen. Montessori School felt much the same way. South Hadley public school felt awful – a rigid, strict place with authoritative teachers who did nothing to garner respect from me.

I was not very successful at engaging either the parent or teacher communities when Cubby was little. I did not develop the ability to interact productively with either group until later, when I learned about autism and how it made me different. In those first years, I had no idea what those people expected of either Cubby or me.

The whole time Cubby was little I watched other families and gathered the sneaking suspicion that there was a “normal way” to run a family, and my way. Every time I considered the “normal way” it just seemed too alien to my way of being. Yet I wanted to fit in. I just never figured out how.

Now, I look back on those years with the benefit of considerable insight into autism and human behavior. There are many things I could have done different, to fit in better and possibly help Cubby better too. 

As for the final part of your question – I don’t think other parents played a big role in raising my son.  In the early years I was never sufficiently connected to other parents for that to happen. Do “other parents” play a big role for neurotypical dads? I have no idea. When Raising Cubby, I looked at each problem, studied printed reference manuals, and made my best decisions to move forward.  His appearance today proves my choices were wise and good.

You seem like a really fabulous dad, with your excursions to the train yards and factories, and driving to those places in such fantastic cars. Was Cubby aware that most kids do not get to go on such adventures? Does he get nostalgic about those outings?

Some dads take their kids to train yards to drive locomotives, while other dads chain their kids up in the basement while they go out and party. In both cases, the life they live is all each kid knows.

While I can imagine the possible range of activities a parent and kid might engage in, I have no idea what a “typical dad” does. I based my decisions on what to do with Cubby on things that would be interesting to me. I assumed that he would like many of the same things I liked, and that proved to be true. At least until he got old enough to express objections.

Even then, he remembered and learned from what I told him. For example, when he was five, I warned him about the monsters that live under the storm drain grates, out in the street. I told him to drop an occasional bit of food down the drain, just to be safe. And it worked. None of the kids on our street got eaten by monsters. Fifteen years later, I was proud to see Cubby talking to a little boy, out by the storm drains. “Drop some of your hot dog down the drain,” he said, “to feed the monsters under the road.” Alarmed and enlightened, the kid complied and The Knowledge was passed on to a younger generation.

I also have no idea if he gets nostalgic. At age 23 few kids are ready to give their parents credit for all the fun things they did, and all the wonderful knowledge Dad imparted. You’d be better off asking him that in 20 years.

One of your more striking observations was the need to consider the atypical developmental trajectory of some Autistic kids and their skills -- specifically with Cubby's reading. What advice would you give to parents frustrated or worried about their Autistic kids "catching up"?

Well, it’s obvious that Cubby caught up. Look at him now.  Look at old videos of me, and look at me now. That shows that we can keep growing and developing – and that’s not just getting fatter – even in our fifties. Look at Temple [Grandin] – she shows the same continued growth.

There is no telling how far any particular kid will go, or how soon. Change is perpetual. I’m a big believer in the power of early intervention to help kids change, but in Cubby’s case he changed and grew without any sophisticated costly therapies. So did I. Other kids get hundreds of thousands of dollars in therapy and hardly change at all.  I wish I knew how to predict what would work, for whom, and how soon.

If I did I would make a fortune at the off track betting parlor and I would be relaxing on an island somewhere. Hell, I would own the island.
The author, holding forth.
Photo: Shannon Des Roches Rosa

Cubby's focused interest and expertise in chemistry and explosives led to your family being dragged into an extended legal battle. From an outsider's perspective, it seemed like the prosecutor's unwillingness to understand Cubby's autism and how it affected intent was a significant barrier to speedy justice. Is there anything you might have done differently to help the prosecution understand autism, in hindsight?

No, because bringing autism into the trial would have been like conceding guilt, but asking to be excused because of autism. That was not the case with Cubby.  The issue here was a morally bankrupt prosecutor who saw a chance to advance her career by convicting a geeky kid who seemed like an easy target. She chose major felony charges because they had (in her dreams) national news value. Not because they fit the actions.

To convict a person of the felony of malicious explosion, the prosecutor must prove malice (intent to harm) and actual destruction of property (a car, a house.) The state totally failed on both counts.  Autism played no part in our trial strategy. Cubby was not guilty of the offences charged.

As one of my state trooper friends observed – we won it, fair and square.

Having said that, I am aware that we beat long odds and innocence does not always carry the day.  It’s truly every parent’s nightmare, to be caught in a system like that.

You write about being disabled in Raising Cubby, whereas you had previously stated that you did not consider yourself disabled. Can you talk about how your thinking on the matter has changed?

I didn’t consider myself disabled as a kid but I did think I was “less than other people.” How else would I be expected to feel, treated as I was with no explanation? People who read Look Me in the Eye say the early chapters are a portrait of a disabled child though I never felt that way myself.

I don’t think I am disabled in the context of my day-to-day life now. But that is because I’ve constructed a world where I can be successful. I don’t know how to work in a big company, so I’m self-employed. My people skills are weak, but I have a business where I talk to machines. It’s hard for me to say the right thing in one on one conversation, but I build goodwill by letting my written words make the introduction. In those and a thousand other ways I shield myself from disability.

Put me in a different life context and I might be very disabled indeed. Disability is often a result of the interaction between our abilities (or lack thereof) and the situation in which we find ourselves. People with autism often get less disabled with age as we accumulate a bigger and bigger base of adaptive strategies to help us cope with different situations.

I talk in the book about certain things I can’t do, and when doing those things, I do feel disabled, and my performance is pretty poor. That might lead an observer to describe me as disabled in certain settings. But there are other situations where I do really well and I try to be in them most of the time.

Ability and disability varied by the kind of task (sorting, calculating, imagining a story), the setting (noisy, quiet, bright, dark, etc.) and many other factors. Each of us has things we do best and things we don’t do very well. If the “not very wells” fall below a minimum threshold for our age you might reasonably call those traits of disability. If a person failed in work, personal life, or some other area because of those limitations he could be called disabled. That has certainly happened to me more than once but luckily its not happening right now.

I try really hard to keep succeeding but I know the line between gift and disability is often razor thin.

I don’t think this represents “changed thinking” on my part so much as it represents more evolved expression.

You recently parted ways with Autism Speaks, stating that Autistics " ...are not problems for our parents or society, or genes to be eliminated. We are people." As your involvement with AS was focused on autism science and research, will you be less able to advocate in those areas? Or do you have other science and research connections that will allow you to continue that work on behalf of the Autism communities?

The Federal government spends more than ten dollars for every dollar Autism Speaks spends on science and research. I’m still reviewing proposed science there; I can volunteer for more if I want.  My service on government committees like IACC has given me a better platform to advocate for the kinds of therapies that will be truly beneficial to our population, at all levels.

In the years since I joined the AS Science Board I have also joined many other significant initiatives.  For example, I’ve volunteered for the CSESA advisory board. That’s a Dept. of Education funded project to improve outcomes of high school students on the spectrum. I’ve joined the steering committee for the World Health Organization’s ICF Autism Core Sets Project. I’m still very involved in science and research policy.

My new appointment as Neurodiversity Scholar in Residence at William and Mary is an opportunity to bring progressive thinking about autism and disability to a top-tier college. From there, graduating students can carry that message far and wide. I’ve also started a school right here in my auto complex for high school students with developmental challenges – our TCS Automotive Program. That’s perhaps the greatest of opportunities in terms of serving the community

Woof

Friday, November 1, 2013

The Beginnings of Autistic Speaking Day - Revisited

Today is Autistics Speaking Day. Why? This is why. From our archives.

Corina Becker
autisticsspeakingday.blogspot.com

It started sometime mid-October 2010.  I was browsing the internet, following links off of Twitter to new places I hadn’t been, when something caught my eye. A new autism awareness campaign, it advertised itself as a way to raise money for charities around the world and for people to understand autism better. Curious, and ignoring the growing dread in the pit of my stomach, I clicked the link and took a look. 

What I found was Communication Shutdown, an event started by a group in Australia that promoted people to refrain from going on social networking sites such as Facebook and Twitter for one day, November 1st. It said that it would help people to understand the communication difficulties that people with autism struggle with, and this will help people to know autism better. Also, for a $5 donation, people would get a charitable app to send out tweets and status updates throughout the day on why people were being silent for the day, and the money would go to certain autism charities in people’s own countries.

Let me just tell you, as an Autistic person who uses Twitter extensively for pretty much everything, I was not impressed. As I wrote in my post on October 15th, Real Communication Shutdown, there are many issues with the campaign, beginning with the sensory-overload design of the website, and going on to the basic assumptions made by the organizers. To quote myself:
"... it relies on the assumption that everyone participating uses Twitter and Facebook to communicate.  While I realize that these sites make communication easier, it is not the only way in which NTs can communicate online, and thus subverts the entire exercise of the campaign.
"I was recently asked by a person on Twitter to participate, and I responded that there wasn't much of a point, since I am Autistic, and do not require to learn about difficulties that I myself face in communicating. I pointed out to this person that Twitter and Facebook are two of the sites that actually allow Autistics to communicate and connect with others in the community, so I will not be disappearing from the Internet, as it is my lifeline. I also remarked that this is a flawed simulation, since a non-Autistic person still have the capability to text on their phones, and speak verbally, and so would not be totally comprehending the true reality of Autistic disability."
I went on to suggest that a better way for Communication Shutdown participants to simulate the full extent of the possible communication difficulties Autistic people face: a complete and utter communication disconnection. No internet, no phones, no texting, no note writing, no speaking.  Nothing.

Do not communicate at all, and maybe they'll understand the frustration that causes Autistics to lash out, to hit, bite, scream, and all the other "bad" behaviours that just get blamed on autism. That's what I thought, but then I realized the simulation was flawed. Even if people were to resist the temptations to cheat, it would be too easy for people in an uncontrolled environment to come to the wrong conclusions. Without someone controlling conditions in the simulation, and then providing a structure for feedback and to guide responses towards the purpose of the simulation, it would fail. A simulation, in all honestly, isn't to convey the reality of others perfectly; it's impossible to do so due to the wide spectrum of unique people on the spectrum specifically and in humanity in general. A simulation is to present a piece of a reality in a way that another person who does not normally experience that reality can in part understand the reality of others.

Therefore, as a large-scale simulation, Communication Shutdown will be a failure.  Never mind that in this tech-savy, media-driven generation, there will be an enormous pressure to at least sign in and message to people privately. In fact, given how addicted youth seem to be to their electronic devices, it was basically guarenteed that there would be participants who still signed in during Communication Shutdown.

Knowing this, I impulsively proposed that non-Autistic people be silent and that Autistic people be as loud as possible on social networking sites. I called for "Real Autism Awareness," for Autistic people to:

use this day to flood every social networking site we know with our accounts, our experiences, what it feels like to be Autistic. Every sensory pain, every communication frustration, every account of being bullied, every wondrous moment, every peaceful calm, every instant of understanding and joy.  Let them hear our voices and take back the autism community.

In my next post, I realized other Autistic people felt the same way as me, and I took it one step further from a proposed alternative, to an actual alternative. Whimsically calling it Autistic Speaking Day, I expanded on the purpose of what would come to be known as ASDay: to acknowledge our difficulties while sharing our strengths, passions, and interests, with the intent of raising autism awareness and battling negative stereotypes about autism.

I published the post on October 18, and then started to tweet links to it at a fairly consistent rate. To be honest, I did not expect that much would come from it. I was prepared to write a short post on my blog, linking to my past post and not saying much else other than I was sitting on Twitter, sending out tweets about my life as an Autistic. I really did not expect the responses I got.

I got some responses from someone running Communication Shutdown, but her comments did not satisfy me to call off my counter-event.  In fact, it made me angry and I began to be more aggressive with my promotion of ASDay.  I got some criticisms from other people as well, which I addressed later in a blog post, especially after I noticed ASDay gaining a lot of attention. It seemed that some people were unable to comprehend that 1) ASDay wasn't just about countering Communication Shutdown, but had the purpose of promoting Autism Awareness in our own way; 2) that we weren't asking people to donate money to anything; 3) that even people with the right intentions can make mistakes and those intentions do not excuse them from criticism and protest from the Autistic community; and 4) that all Autistics of all ages and "ability"  levels can participate..

But what amazed me was the flood of support, agreement and pledges to contribute.

Apparently, I wasn't the only one who felt there should be an opposite of Communication Shutdown.  Browsing other blogs, I became aware of other similar events.  I decided that it didn't matter what each of us were calling it, but that we were all doing the same thing, with the same goals in mind.  So I thought we might as well work together, and agreed to dedicate a few hours here and there with the other campaigns online. I still thought that ASDay would just be me and maybe a few others, tweeting obsessively throughout the day.

Until Kathryn Bjornstad commented on my blog with the Facebook link, I had no idea how big my idea had gotten. After clicking on the link, I think I just sat there for at least half an hour, stunned at how many people had already joined up to participate. I don't think I can accurately describe the feelings of jubilance I felt, and success. In a way, just by having so many people say "yes, I will not be quiet, I will speak up" made ASDay a smashing success before it even began.

It was then I started to realize what I had started. I felt electrified with energy and a rush of excitement. I remember a point where I thought "It's just not me, so now I can't slack off." And so with my next entry, I started to get to work, making logos to spread around and getting involved with the Facebook group. Someone made a twibbon of it, and another person suggested the hashtag #ASDay when I realized that my original tag #AutisticsSpeakingDay was really too long. I also addressed the criticisms, which I mentioned above.

As November 1st got closer and closer, I became more and more busy. Both Kathryn and I were contacted by news networks, including ABC News (Australia), 4ZzZFM News, Examiner.com, and the Washington Times for interviews through email or just to have permission to quote what we've already wrote. I was also asked by Steve Silberman, investigative reporter for Wired magazine, to write a guest post for ASDay on his personal blog. Between this and moderating the ASDay pages, I ended up not having time to write a detailed post for ASDay and simply picked out what I thought were some of my best blog posts.

I spent the day on Twitter, something like twenty hours straight, talking to people through tweetchat on the CoffeeKlatch, or on my own. People would contact me with a blog post they had done, and I'd share it on Facebook for the large list Kathryn compiled. I tried to read them all.  The sheer amount of people openly talking and sharing information, and the responses throughout the day still amaze me. The goal of ASDay was to get people to learn about autism directly from Autistic people, and it was working.

From what we could track, we had over 500 participants from all over the world from as far as Indonesia and Turkey, over 80 blog posts, and we were messaging blog posts to over 2000 people who were invited to the event on Facebook alone.  We have no clue how far the event reached just by "word of mouth" over the Internet.

As ASDay started to come to an end, we started getting an incredible about of feedback. I was very pleased by the responses from parents, family and professions about what they had learned from the day. As Jeanne Holverstott put it in a lovely post,
"#ASDay became more than just another day. It was a large-scale dialogue about daily struggles, successes, and challenges that we didn’t know about, couldn’t guess about, and, perhaps, never dreamed of. Lifetimes of day-to-day experiences congealed to document what it’s like to be a person with an autism spectrum disorder. #ASDay was a living, breathing, and talking personal and community history book with pages filled by unsung heroes with powerful stories."
We also started getting responses from Autistic people. The thanks and success for putting ASDay together I defer; the success of Autistics Speaking Day is not mine alone. It is the combined efforts of everyone involved, even in the smallest of tasks. It is a beautiful expression of community.

However, that is not why we immediately decided to run ASDay again. There was another result of ASDay that we hadn't quite anticipated, but was definitely welcome: empowerment.

Throughout the blog posts and feedback responses, we realized how much ASDay was an inspiration for a lot of Autistic people. There have been people who have started blogging, and continued blogging, from this event alone. Other Autistics who already blog felt encouraged to be open about their diagnosis and blog regularly about their lives as Autistic people. On several accounts, Autistic youths have felt empowered to start getting involved with their local autism organizations and become active in the autism/Autistic communities.

When I read these responses, I cried. I still cry when I think about them. I'm awestruck at how ASDay impacted people with such a resounding effect. Through these responses, I've realized the value that ASDay had to other people. For me, it was just another awareness campaign, one of the many I've participated in since becoming an active member of the Autistic community.  For others, this was the starting point for their own journeys and inauguration into the community as Autistic members.

Even though we started as an awareness campaign, ASDay has become so much more. It is a chance for involvement and support for many Autistic members, it is a source of empowerment, to be able to speak and express oneself and know for sure that there are people listening. It is a chance for communication within our communities, to share information, our experiences and our lives.

With this in mind, Kathryn and I decided to continue running ASDay each year, for as long as there are Autistic people who want it to keep going. This year we decided to plan a little more ahead than the impulsive rush we did last year. We're using social media and word of mouth again as our primary means of organization and advertisement. We opened up a blog so that we can compile all contributing blogs into one place, as well as a new Facebook page and a Twitter account.

We may not be a counter-event to Communication Shutdown anymore, but the rest of our goals for ASDay have remain the same: To raise not only autism awareness, but also acceptance, and to battle negative stereotypes about autism by advocating for the inclusion of Autistic people in the community, and offer a forum to broadcast the messages of Autistic people and non-Autistic allies to as many people as possible. We welcome Autistics of all ages and "functioning" to participate in sharing their stories and messages, in whatever form is the most comfortable to express. We also welcome our non-Autistic allies to share in this day of respectful community and communication.

We hope that all of you will join us on November 1st!