Wednesday, August 31, 2011

Resources: Share the Wealth

The Thinking Person's Guide to Autism has been humming along for over a year now, and we've shared more than 200 great interviews, stories and how-to's here. We've watched the TPGA Facebook page grow with active, vibrant discussions, and we love seeing many different perspectives pop-up in those comments. It's encouraging, knowing these pages have provided a positive, supportive and safe environment for discussion and questions. We are seeing a community come to life here, and it's exciting.

Editing is under way on the book, The Thinking Person's Guide to Autism, with a plan to publish later this fall. In an effort to get the best resources into the print version, we are putting out one last call to our readers and contributors: Share the wealth of knowledge you have collected. If you have an online resource, book, service, government agency or other great person, place, or thing that we haven't listed here, please send an email to thinkingautism at with "New Resource" in the subject line. You send them in, and we'll update the website and keep adding them to the Resources section until we go to print.

And we have one more request: Tell us what else you'd like to see here on the site. Is there a subject you want more information on? Is there a topic we haven't covered or things that are on the horizon for you that you'd like to learn more about? We want the posts here to have the right information for our community, so please put your suggestions in the comments section below, or send us an email to thinkingautism at with "Suggested Topic" in the subject line.

With thanks -The Editors

Monday, August 29, 2011

The Eternal Autismland Conundrum

Kristina Chew

Matching t-shirts/outfits (not intentional)
photo (c) 2011 Kristina Chew

It is the eternal conundrum. The same day your child has a mammoth, sweaty evening behavior storm was the day he biked the most ever in one week (172 miles), said some nice longer phrases in response to his dad's questions about 'where are we going,' pedaled two miles in a downpour while he and Jim were on the bike path, told us in the middle of a car ride that he needed 'bathroom.'

Some separate the 'bad' from the 'good' things their child does, as if to say the former are 'not the child but the autism.' We've become rather inclined to say that what Charlie does, is what Charlie does. The real Charlie is a messy and complex mix, accomplishing lovely feats and then all wound up in storming.

Perhaps the effort to do all those great things -- plus yestrday's anxiety of waiting for dad -- causes Charlie immense stress and it gets bottled up, to emerge in a great whoosh, for all our careful efforts to explain with social stories and calendars and pictures?

It's a conundrum that we'll keep working at, together with our boy.


This essay was previously published at

Friday, August 26, 2011

Ari Ne'eman at the Syracuse University Neurodiversity Symposium, Part 2

Three weeks ago, Syracuse University hosted its first regional Neurodiversity Sypmosium, with Ari Ne'eman as the keynote speaker. Mr. Ne'eman is President and co-founder of the Autistic Self-Advocacy Network, as well as a presidential appointee to the National Council on Disability. He spoke both fiercely and wittily about both neurodiversity and self-advocacy in the past, present, and future.

TPGA is publishing a series of excerpts from Mr. Ne'eman's talk. This is part two. Part one was published one week ago, and focuses on the history of the disability rights movement. Part two centers on power and perception, about how " the autism world, what autism is -- and what we should do about it -- is very much under conflict."

TPGA was given an audio copy of Mr. Ne'eman's talk by journalist Steve Silberman, who is currently researching a book about neurodiversity. Thank you, Steve.

A couple of years ago, in December 2007, the Autistic Self Advocacy Network and a number of other disability right groups mobilized in response to the very offensive ad campaign put together by the New York University Child Study Center, and many of you are familiar with this campaign: it's called Ransom Notes: a series of fake ransom notes were posted across New York City in posters and billboards and magazine ads -- produced by BBDO, the ad firm that does Pepsi Cola advertising, so it was a big deal. And each of these ransom notes claimed to be from a particular disability, claimed to have stolen a child, and left God knows what in its place. One said, "We have your son, we will make him fidget and squirm until he's a detriment to himself and everyone around him. Signed, ADHD." Or, "We have your child, we'll make it impossible for him to have friends or live independently for as long as he lives. Signed, Autism."

They had a series of these. And when we objected, when we protested, and when -- thank God, because they usually don't do this when disabled people protest -- the media got interested, the head of the NYU Child Study Center, Dr. Harold Koplewicz, said to the New York Times that "Well, frankly, I'm surprised. I was not expecting to be getting criticism from adult patients." Because that's how we think of ourselves when we wake up in the morning, right? "I'm an adult patient today. I used to be a child patient but then I grew up."

That is the mindset of the people who possess the majority of power in the autism conversation, and large parts of the disability conversation in America today. It's like the old phrase, "If all you have is a hammer, the whole world looks like a nail." If your context for relating to people with disabilities is in the context of medical service provision, or medical treatment, then when you talk about disability -- and again, in our society, when policy makers or media want to hear about disability, they typically do not go to those of us with disabilities ourselves. They go to experts: The MDs and PhDs of the world.

But when the media and policy makers go to those experts, and they ask about anything to do with disability, like "What are the issues disabled people face in trying to find employment," or "What are the issues disabled people find in trying to find friends," as if they would know better than we would, their responses are always, quite explicitly, in a medical context.

We saw this again, quite recently, when the Center for Disease Control and Prevention put forward a proposal to create a diagnostic code for wandering behavior in the ICD-9-CM, which is the hospital billing code that hospitals and service providers use in order to get insurance reimbursement. And what they were saying was, "Because some disabled people wander away from their families or caregivers, that we should ascribe this as a medical trait, so that insurance reimbursement can be given for tracking devices or anti-wandering measures. And they did some quick and not very high quality research to support this an an issue, that they should create this diagnostic code.

In the research, they pointed to this very high number, this statistic of between 85 and 92 percent that showed that this many Autistic children wander. And what I find interesting about that research is that this is an incidental matter. They collected data about why families or caregivers thought that their children or adult relatives were wandering. And the reasons were very interesting: "Wanted to remove oneself from a place that was unpleasant." "Wanted to go to a favorite place." "Was pursuing a special interest." "Was bored."

But because in the minds of so many, to be a disabled person, and particularly to be an Autistic person -- because we are more medicalized than many in the disability community, because our civil rights movement is still so new -- is to have everything take place within a explicitly medical context.

Now we are currently seeing this play out in other sectors as well, as with the wandering code -- and I'm sad to say that the CDC won on that. As we look forward to budget cuts in the future, people with disabilities receiving home- and community-based services may not be able to get assistive technology, may not be able to get assistive care, may not be able to get transportation -- but thanks to the wandering code, there's a damned good chance we'll be able to get tracking devices.

This is part of a broader conflict that we're seeing, and it's a conflict that is playing out -- at least from the perspective of the autism community -- over different ideas about what autism is, and what the goals of the nation, with regards to autism, should be.

We have fairly clear ideas as to what the goals of the nation with regards to disability should be. The Americans with Disabilities Act of 1990, finding number seven, states: "Congress finds: the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals." Very clear goals.

But in the autism world, what autism is -- and what we should do about it -- is very much under conflict. And I find it fascinating, because right now, you could not find a disability category that is getting more public attention. Pick any Hollywood celebrity, and the odds are very good that they've done an autism fundraiser. You pick any television series, and the odds are very good that they've suffered from Very Special Episode syndrome. You would be very hard pressed to find some aspect of life in which autism is not being talked about. And yet despite that, we see very little measurable progress in the lives of Autistic people ourselves.

Approximately a third of Autistic students spend less than 40 percent of our time in general education classes. It's one of the highest rates of exclusion in any category of students with disabilities. The data that we have on people with developmental disabilities in home- and community-based service provisions system finds that Autistic adults are much less likely to report having our rights respected, and having the opportunity to exert choice and control in the kinds of services we receive -- ranking from big things, like picking your own staff; to small things like having the right to read your mail without having somebody open it for you and check whether or not it's appropriate. We have data which shows that only about 39 percent of Autistic adults needing community service provisions have a co-occurring diagnosis of mental illness, yet about 40 percent are receiving psychotropic medication -- which suggests a very high rate of chemical restraint.

And across the board, in every area we're measuring, the lives of Autistic people are worse than the lives of other groups of people with disabilities. And this in spite of the fact that, once again, autism is far more visible than any other disability category.

How did this happen? I think we can see a number of explanations when we look at where this public perception is going to, where these research dollars are going, where this political will is going. On an annual basis, 314 million dollars, approximately, is spent on autism research in this country, and that's both public and private dollars. Would anybody care to hazard a guess as to what percentage of those dollars are spent on the needs of adults on the autism spectrum? Less than one percent.

I believe research is a statement on the part of society about what it decides to invest in, with regards to future it desires. What does that imply, when less than one percent of the autism research agenda is spent on the needs of autistic adults? Anyone want to hazard a guess as to what percentage of the autism research agenda is spent on improving services or support strategies? Three percent.

The vast majority of the autism research agenda is spent on the very narrow objective of causation, and cure, and prevention. And I think this reflects what people perceive the goals of society with regards to the autism spectrum. Not to make the world better for Autistic people, not to make a world in which Autistic people have more opportunities, in which we have more chances to participate, in which we have more chances to be included in that big nebulous concept knows as The American Dream. Instead, we see a world in which we don't exist. And people, frankly, are quite explicit about that.

When the Combating Autism Act was passed in 2006, the founder of Cure Autism Now and the founder of Autism Speaks declared the act to be a declaration of war on autism. And the founder of Autism Speaks said that he was very thrilled about this, because when we got rid of autism, when we "made autism a word that only exists in history books," he would "have my grandson back." He has an autistic grandson, but in his opinion he clearly doesn't have a grandson at all, by virtue of the fact that that grandson is Autistic.

I think that reflects how these people look at the objective of the work that they're doing. If you turn on a TV and see an Autism Speaks advertisement, having a child with autism is compared to having a child in a fatal car accident, or to having a child be struck by lightning -- or any number of fatal, negative incidents of life. I think that reflects, very clearly, how they define their goals. There's a book that came out in the parent community not too long ago called I Wish My Kids Had Cancer: A Family Surviving the Autism Epidemic.

Now, how did we get here? How did we get to the point where all of this money, and all of this power, was so divorced from any semblance of the needs and aspirations of the constituency that was attempting to be served, or that was being talked about? I think to understand that, we have to look at the broader history of the autism community. [Which will be next week's installment. -Editors]

You can view the full talk -- including jokes, asides, and audience commentary -- in the webcast of Mr. Ne'eman's keynote.  

Wednesday, August 24, 2011

Why We Are Homeschooling Our Autistic Son

Emily Willingham

Since TH was in kindergarten, he's had a nemesis. Ironically, it was the very first person he met at his school, as we had just moved into the district. Idiots that we were, we thought she seemed pretty nice and encouraged TH to engage with her. Of course, he didn't. Or, at least, he didn't do it the "right" way.

Two weeks into the kindergarten year, we learned that a parent had contacted the teacher, complaining about our son, claiming he'd made "death threats" against her son. Turns out, her son and this girl we'd met that first day together had teamed up against TH and had (and I'm not making this up) threatened to cut his head off and throw it in the trash. TH had parrotted this back to them, and that's the part that the boy had told his mother, conveniently skipping over the rest.

That, as many of you know, is the classic scenario. Low-arousal autistic kid finally gets fed up enough with bullying to respond or retaliate, and low-arousal autistic kid is the one who gets in trouble because he hasn't previously exhibited any signs of distress or called attention to the events that precipitated his actions. Classic.

We've watched that happen ourselves over the years, watched TH be attacked or taunted, watched it build to the point that even he had to respond, and then watched an adult who was supposed to be watching the whole time suddenly check in and punish TH. And we know that it's happened at school repeatedly over the years.

Another thing that is a repeat pattern for us is the school's response. We've had five or six paroxysms of stress and deep emotional pain over his 3.5 years at this school thanks to a buildup of taunting and bullying of our son during unstructured situations that eventually peaks in that oh-so-ironic outcome of another parent complaining about him when it was their child who instigated. It's been boys. It's been girls. It's like he walks around with an enormous target sign on his forehead, or a t-shirt that reads, "Hey, come bully me because I probably won't do a single effective thing to stop you." As in, he never complains to a teacher, never cries, never shows distress that an adult could register. Or at least, an adult who doesn't know him well enough could register.

We've had our last paroxysm. We've had it. For the last several weeks, things have escalated yet again on the playground. We've made it clear and the school has clearly indicated that they understand that our son isn't at his best in unstructured situations. That he is most susceptible to being targeted and most helpless to respond with appropriate defense in these situations. The school, with each paroxysm, has girded its loins, buckled on some do-the-right-thing armor, and done right by our son. Last year, after one of our biggest spasms, they set up such a structured situation that the rest of the year went so smoothly, we were all deceived into thinking that now, Everything Was OK.

It wasn't. The do-the-right-thing armor gets rusty, loins ungird, vigilance slips, it all starts up again. Kids say many ugly things to him, daily. They want him to die. They want him to go to hell. They hate him. He's ugly. He stinks. They "don't like autistic people." He's a bully (Oh. My. God). It's still Lord of the Flies out there, and my son is still Piggy.

One of the constants through all of this has been that little girl we met first back in kindergarten. She's a persistent little bully, having consistently targeted our son at every available opportunity, from the school bus to the cafeteria to the playground to chance encounters in the hall. And she doesn't stick only to words. She kicks. She punches. And, she uses her fingernails.

The school has, for years, been well aware of this situation with this particular child and has promised to keep her away from TH. Yet, for the last several weeks, as I know from his daily after-school reports, she's been in the picture. I've listened to what he's said. I've thought carefully about whether or not I should call the school and complain or see if TH is at a point where he can work these things out for himself. I do not want to be a helicopter parent, having the Powers That Be monitor my son's every minute of the day.

And because I was too cautious, we ended up with this set of injuries. Because the school dropped the ball on a situation of which it has been aware for years, we have this set of injuries. And because we are sick of the emotional and physical and mental shocks that each of these paroxysms brings on, we have decided to withdraw our son from the school. We have decided to homeschool.

Many people commented on my post showing this set of injuries to my son's face, one of which I believe will become a permanent scar. They've suggested lawsuits, calling the police, calling the parents. I'm not a litigious person -- I've got a graduate school experience to demonstrate that I don't sue people even when I'd be completely justified in doing so and probably walk away with a nice little packet of Benjamins. And some of you have asked how the school has responded. Here's how.

I sent that picture to one of our son's teachers, his favorite and the one who apparently saw and asked about the facial injury. I also sent it to his behavior teacher, who's worked with him for his entire career at this school and who is most aware of this situation with this particular girl. And I sent it to the principal, thinking he might want to know about what children at his school are doing on the playground. Again. I add that the day of the injury, no adult contacted me about it. No adult treated the open abrasion that the fingernails of another person had produced on my son's face and neck. I'm pretty sure there are standard operating procedures in place for such things. If there are, they weren't followed. If there aren't, there should be.

The teacher emailed me back that night. The behavior teacher emailed me several times the next day and called me. The principal? Radio silence. Not. A. Word.

I learned from a parent that a mother who went ballistic about our son's calling her son the boy's name with the word "pooh" at the end threatened to sue and that this somehow got the attention of the school authorities and led to action of some kind. (I also learned that this mother mocked our Circle of Friends effort and gleefully announced that she certainly wouldn't be signing on for that and was pleased to note at least one other parent who wouldn't be doing it. We're a ever-widening circle of Christ around here, we are.)

In spite of my fiery Irish temper, I'm actually a pretty deliberative, thinking person, as my overcautious response to this most recent buildup indicates. I don't act now at the age of 43 without thinking things through very carefully first. And I have to say, for the first time in my life, I'm deliberating very carefully and thinking through a certain thing that is usually not in my nature.

Meanwhile, we're withdrawing our son from school, and he will begin his homeschool career here, with his heartbroken mother who had hoped for better from this society in which we live. Foolish, foolish hope.

Monday, August 22, 2011

Finding Resources with

I met with Eric Peacock, the GM of MyAutismTeam and Insider Pages. He believes strongly in community, and empowering patients, and proudly retweets many of the posts from TPGA. This is not a promotion, or an advertisement for MyAutismTeam, although Eric did buy me breakfast (thank you Eric). MyAutismTeam is a resource with headquarters based in San Francisco, near three of the TPGA editors, so being an active part of this new resource has been a natural extension of our general interest in community education. TPGA will not make any money from posting this information. It is our sincere desire to highlight companies, both non- and for-profit, which we feel can help our community, and welcome suggestions for other companies and agencies to showcase. If you choose to use MyAutismTeam, and we hope you do, please provide feedback on the site as you use it so it can become an even better tool. You can follow Eric and MyAutismTeam on twitter, @ejpeacock and @MyAutismTeam or visit for more information.                          -Jennifer, for the TPGA Editors

How did the idea for MyAutismTeam come about?
We were part of Insider Pages, and we had just created DoctorFinder. With DoctorFinder we had a simple goal: allow people to find good doctors who were local and that take your insurance. It sounds simple, but it just wasn’t available, and people loved it. They were looking at more than ten pages per visit; they were really using the search and getting what they asked for. In my personal life, I had a nephew who was diagnosed with autism, and all of this was happening at the same time we were having our children. And with one in 70 boys being diagnosed, some of your friends are going to be a part of that. For us, our best friend’s child, was one and half when we started and got diagnosed at age three. So that’s when I became more familiar with the complexities, rather than the heterogeneity of autism. They say if you meet 100 kids with autism, you’ve met 100 kids with autism. So that was almost two years ago, when we began working on the MyAutismTeam idea. For parents there are just so many things to do after that diagnosis, so many things to look into. Of course there are so many unknowns, if we can remove one of the barriers for parents, which is to get good information, we thought, “let’s do it.” And we can do this; this is tractable. If we can do this right it would be a huge thing for the community. We thought, “Let’s give all of this information a home.” No one else is offering local search connecting people with good local providers.

So what is the community like now?
We started in April with 30 'alpha users', and six weeks into it we were at 1273 (editors note: I got a note over the weekend that they are now over 2000 users). By July we had over 9700 Facebook fans. More than a third of our visitors have entered teams, and those teams don't just have doctors, there are swim teachers and summer camps and barbers and music classes, all of the resources that make up a team. Users are also beginning to use the comments area to create more community. Some of it is “my day is going great”, but other people have posted “we’re really having problems”, and parents across the country respond so quickly with help, advice or support. We have users in in every state, and the breakdown is well-distributed with 16% of users are in California, then Florida, Pennsylvania, and New York, certainly in the big metropolitan areas, but in the smaller communities as well.

We have had a steady, growing population, and soon we will get to that critical tipping point where the information will be even more specific and helpful. We’re already finding pockets where with even 20 parents in a certain region it creates an active community. And if you can get that kind of use with 1200 users, then with 10,000 it is going to be an incredibly useful resource. I think there is enough passion in this community to get to 10,000 and then 100,000.

Are there adults with autism on the site? Our community often has trouble bridging the gap between child and adult, caretaker and self-advocate. 
We want to be respectful and get it right. Currently it is focused on serving parents and caretakers. We wanted to start somewhere, and said, “Let’s just get this right for parents.” But we already have a large population of users who are parents of children with autism, but their children are older, in their late teens or twenties users like (TPGA contributor) Laura Shumaker, so we are getting that broad base. And the people on those teams can help show other parents, with younger children, some of the things they will need to think about. I think that is going to be one of the biggest benefits of the site, you need to think about some of those services and providers ahead of time. And while we haven’t tailor-made it, adults with autism can absolutely utilize the site to find doctors and services that are more autism-friendly, and contribute their own reviews of providers and services.

What are some of the success stories you’ve seen so far? 
We have had a number of great stories from the beginning, and watching the ways people use the application helps us make the functionality better, Just after we launched, we had a woman in the (San Francisco) North bay who posted that she had found a saxophone instructor for her son, which was so great. Then a week later she posted another note that the teacher had told her that her son was “unteachable.” Within a very short amount of time we had people offering suggestions and we were able to change the functionality of the website so that members can contact each other via the site. And we had all of these local people offering suggestions, and people from farther away offering support.

With more and more users, we’re hoping it will be the easiest way to find a resource. You have a great music teacher and you put that person on your team, and the next person can put in some key words and maybe they can get 10 instructors in a 50 mile radius of their home. We already have theAutism Speaks database with 30,000 resources, and the entire Parents Helping Parents and Easter Seals databases as well. Right now you can put in a search for a psychiatrist, or an occupational therapist and get all of them in your area, and you are seeing those providers prioritized, with the businesses and providers towards the top that have been marked as “autism Yes!”

What’s next for the MyAutismTeam site? 
A mobile app is blazingly obvious. We know you are on the go constantly. One of the times you might be able to share opinions and information is when you are in the waiting room. Maybe you check in, add the provider to your team, jot down a note. You are also creating your own record of the appointments you’ve been to.

So many parents have collected information about the doctors they’ve seen. I am in awe at the work these parents have done. It’s really amazing, the body of work so many of you have accomplished. It is a full time job, which requires exceptional expertise. We have built this infrastructure, maybe this is a place to express that achievement, sharing all of that information with other families. And some of this becomes really actionable. This summer for example, it’s not all idyllic finding things to do, so what places did you go to with your children? Blog about that children’s theater, then add it to your team. At the end of it, if you’ve done something that worked, then maybe next summer, wouldn’t it be great if we had a comprehensive national directory to make a summer plan? Have a great provider? Add it. A great barber? Add it. Don’t worry if it’s not a doctor, add whomever is on your team. Then it can be a repository of all of that information, and next summer you do not have to reinvent the wheel. We can have all of that information on MyAutismTeam.

Create your own profile with your team, and add reviews so people in your area can benefit from your experience. You can find TPGA editor, Jennifer's team here:

Friday, August 19, 2011

Ari Ne'eman at the Syracuse University Neurodiversity Symposium, Part 1

Two weeks ago, Syracuse University hosted its first regional Neurodiversity Sypmosium, with Ari Ne'eman as the keynote speaker. Mr. Ne'eman is President and co-founder of the Autistic Self-Advocacy Network, as well as a presidential appointee to the National Council on Disability. He spoke both fiercely and wittily about both neurodiversity and self-advocacy in the past, present, and future.

TPGA was given an audio copy of Mr. Ne'eman's talk by neurodiversity-immersed journalist Steve Silberman, who said it needed to be shared. This will be the first of three posts covering the talk; this excerpt focuses on Mr. Ne'eman's coverage of the history of the neurodiversity, self-advocacy, and disability rights movements as civil rights movements, as well as "...the peculiar concept that people with autism could be a minority group like any other."


I see this symposium not only as the beginning of a process that's being going on some time -- the infiltration of the neurodiversity movement into academia, and also as the continuation of the recognition of neurodiversity and of Autistic self-advocacy and of this broad stroke of activity that we can refer to as moving forward the frontiers of the disability rights movement, as things that are being accepted into the mainstream of American life.

And that is something that people have been very resistant to; there are people who look at the neurodiversity movement, and think that we are trying to advance some radical or strange concept by saying that people with autism and people with other disabilities should not be considered second-rate minority groups, that we should be considered equal citizens of society, that the focus of autism advocacy should be to try and create a word that is better for Autistic people, as opposed to creating a world that has no Autistic people. There are people who think that that is a novel and unique idea, and they don't like novel and unique ideas. But by moving forward on these kinds of events, we send the message that this is not something that's happening on the fringe. This is something that's happening over the course of our society, and that is not going to go away.

In keeping with that, I think one of the things that always jumps out at me at these kinds of events is a sense of history. And I believe that history speaks to us, and I mean this in a number of senses. First, I want to acknowledge the history from which the neurodiversity movement springs, if not from the fact that Jim Sinclair [who also presented at the symposium] wrote "Don't Mourn for Us" when I was five years old, I certainly would not have gotten involved in the neurodiversity movement or the Autistic self-advocacy movement, and I think the same can be said of many of the people who are involved with it today. So some recognition of the history of our own movement is important. But equally so, it's essential that we recognize that neurodiversity is an outgrowth of disability rights, and disability rights is an outgrowth of the civil rights movement.

I often think of an anecdote that a friend told me -- she's a major midwestern researcher on disability -- and when she joined the faculty, she heard about something that occurred 20 years before: In the 1940s or 1950s, this university decided to take the novel step of hiring female faculty members in the hard sciences. It was a novel idea that a woman could do chemistry and physics and things that involved the mind. And there were opponents to this controversial new plan, new policy. And one of the issues that emerged was that the science faculty building had no women's restrooms. Because why would a science faculty building need women's restrooms? And immediately, when the opponents of this policy realized they would have to pay money to retrofit these restrooms, they started talking about how misguided the entire policy was, because look how expensive integration is.

Now, today, when we build a building, we generally remember that it should include both men's and women's restrooms. And we're starting to remember that it should be accessible for people with disabilities. We haven't gotten all the way there, even on the issues of physical architecture. But when we move forward the conversation to discussions around schools, or to discussions around curriculum, or discussions around events, or any number of other things, that component of access -- that component of thinking the way to do it "right" from the beginning, and the cost of doing it right from the beginning, is accessible and inclusive -- is often forgotten.

This is something that is not new in the neurological disability world. We often talk about autism as the main area where the neurodiversity movement is growing, and playing out its perspectives, goals, and objectives; but it's really much broader than that, and I'm very pleased that we have here today a number of people from other disability communities who see the neurodiversity construct as something that's relevant to them. This is something that's frankly not novel to the neurodiversity movement. There have been people who have been fighting over what the proper objective for disability advocacy should be, all the way back to not just the last century -- which is not that long ago -- but the century before that. If you go back to the 1880, it was the year in which the very first self-advocacy group was formed: the National Association of the Deaf. And it was formed for a variety of reasons, but one of them, and one of the reasons it grew rather quickly after that, was a growing concern about the American eugenics movement.

How many of you have heard of Alexander Graham Bell? Bell was a very strong supporter of eugenics. A quote:
"Those who believe as I do, that the production of a defective race of human beings would be a great calamity to the world, will examine carefully the causes that lead to the intermarriage of the Deaf, with the objective of applying a remedy."
Going all the way back to that early period in American disability history, there were those who defined their ideas about what a country should be striving for about disability not as greater employment, greater inclusion, greater quality of life, but a world that only had people within it that were deemed as appropriate and acceptable to their modes of thinking. Now this was something that was not limited to the Deaf community and the issues that emerged there. We often talk about disability history and we think about the Deaf because the Deaf were organized long before other groups were organized. But in the 1920s and '30s as the Great Depression roared on, and in the period of the New Deal, there was also efforts for disabled people to organize on our own behalf, to try to secure equal rights and recognition -- that we are not just a health category, but a minority group like any other.

In the late 1930s, the New York League of the Physically Handicapped came together to stage a sit in of the Works Progress Administration Office in response to the fact that the New Deal was doing a lot of things to offer Americans jobs, but nothing to offer disabled Americans jobs. And what I find interesting about this is that this is a precursor to modern efforts by ADAPT and other disability rights groups to try and see disability included within progressive policy making efforts. And that's a challenge that persists to this very day.

If you go forward another decade, the National Federation of the Blind was formed by Jacobus ten Broek, a blind law professor, who stated something that I think is still very applicable to this day:
"There are forces abroad in the land who in their disregard of the organized blind view consumers not as individuals to be served, but as defective mechanisms to be services." 
And once again, this is something that we continue to see today in the approach of many parts of disability policy platform and service provisions that view people with disabilities as very effective ways of getting large Medicaid reimbursements, for example, or of getting access to a service provider industry -- but does not view disabled people, does not view us as people with our own thoughts, aspirations, and dreams. And too many who make their business disability do not define us in any terms other than how they interact with us -- in medical contexts, in service provision contexts.

You can view the full talk in the webcast of Mr. Ne'eman's keynote.

Wednesday, August 17, 2011

Five Ways to Help Reduce Problematic Behaviors

Kathi Flynn

If you are responsible for a child who has behavioral outbursts, you're likely looking for ways to reduce both the behaviors and their intensity. As a behavior specialist, I have learned many reactive strategies that help to reduce existing behaviors.

Though it's critical in such scenarios to find the functions of the behaviors by conducting a Functional Behavior Analysis and setting up a Behavior Intervention Plan (BIP)1, here are five strategies/consequences to try in the heat of the moment:
  1. Ignore the Behavior
    Do not verbalize the behavior that is happening. If a child is doing something dangerous to himself or others, you obviously have to intervene, but you still do not have to draw attention to the actual behavior. This strategy only works if you know that your child is doing this behavior to get attention, even if the attention is negative. You don’t want to reinforce inappropriate behavior, so ignore it -- and then also try a strategy below.

  2. Redirection
    If a child is a acting out, verbally or physically, it is important to redirect her to another task or activity. Instead of focusing on the behavior, focus on what you want her to do next.

  3. Decrease Demands2
    Sometimes, a child becomes frustrated with the task at hand and does not know how to ask for help, so instead, he acts out. One strategy is to lower the demands that are placed on him. This can include lowering the amount of time he has to be on task before he gets a break. You may just have him work for one more minute. Decrease the number of questions, or offer assistance to complete the task together.

  4. Decrease Stimulation3
    If a child has sensory processing disorders, the environment or setting may provoke behaviors. If a setting is too loud, has too many people, too many pictures, or is too light or too dark, it may be overstimulating. Use headphones, a preferred electronic device like an iPhone or iPad to distract, or simply take a walk outside or to a quieter location. This may help you get through a trip to a restaurant, family party, supermarket, or store.

  5. Use a Calming Down Protocol
    It is very important to try to help a child self-regulate and calm down before behaviors escalate and become dangerous situations. Teach him how to take deep breaths, fold his hands to avoid hitting/punching, count to a designated number, close his eyes, go for a walk, etc. If a child is calmed by sensory integration protocols such as deep pressure or light scratching on the arms, try those, too.

Footnotes from professional advocate Carol Greenburg of New York Special Needs Consulting

1. Parents should specifically request Functional Behavioral Analyses in several venues (not just the usual 20-minute classroom observation) by Board Certified Behavior Analysts. As always, it is preferable for parents to make those requests in writing.

2. Decreasing demands is only the way to go if the problem is that the child does not understand what is expected. It is presumptuous to assume that the child's behavior is attempting to communicate an inability. Sometimes the kid's behavior is saying "I mastered that days ago. Bored Now." There is a risk of dumbing down the work for kids who know they are capable of much more.

It is comprehensible how these misunderstandings happen. Some of us [with autism] are low affect and our processing is delayed but deeper, so not only do we get a concept, we might get it on a deeper level -- when we look the most lost. When this happens, and the response of the teacher is to talk slower and use words with fewer syllables, it is tremendously frustrating for autistic folks -- but not because the work is too hard. 

3. Decreasing stimulation is often a good idea. But if the child is hypo- rather than hyper sensitive to some kind of sensory input, if they are sensory seekers, then the best way to calm them down is to provide more input rather than less. Deep pressure and opportunities for high physical activity is a better bet for such kids.


A version of Kathi's essay was previously published at

Monday, August 15, 2011

Checking the "Autism" Box

Jennifer Byde Myers

My son was almost three when we realized how much he needed a label. Without an official diagnosis, it would be nearly impossible for him to get services he needed from the county or state. A label is required so bureaucrats can check the correct boxes, which allows everyone to take money out of the right vat with the right dipper. It's a huge pain, by the way, more difficult than finding childcare or signing your kid up for summer camp. Getting someone, anyone, to write down, definitively, what is "wrong" with your child is a serious lesson in patience, persistence and the power of language.

No one wants to be the first person to label your child. We begged to get "cerebral palsy, ataxia" to describe Jake's odd way of hipping, and hopping, and stumbling around. No one worried about anything behavioral at that point, mostly because the check box for MR (which is the nice way of saying mentally retarded) had already been checked. But just a plain old MR won't get you much. It's better to add a little HI (hearing impairment), or better yet there's No. 5, which is vision impairment. We don't have checks in those boxes, but we do have most of the other ones: developmental delay, speech/language impairment, multiple disabilities. Truthfully, the best one I've found so far is OI, orthopedic impairment. If you get that box checked, the money comes out of some other pocket called the "low incidence fund," and people stop caring how much your child's little switches and talking buttons cost because the school district doesn't pay for them directly; it comes out at a different level in the budget. When we started this game with his first IEP (Individualized Education Program) in 2003, the box for autism wasn't even listed as an option yet.

When Jake did receive the autism label, a year later, written down on the letterhead from the pediatric psychiatry department from a prestigious university, I called the office back to make sure that they knew they had put my son in the "autism" category of the study. The poor woman on the phone stuttered a bit and asked if anyone had ever talked to me about the fact that my son was autistic. I jumped in and said, "Oh, don't worry, we're thrilled!" She let me know that I was the first person she had ever spoken to who had used the word "thrilled" after an autism diagnosis.

But I really was, because there is a power in naming things. We can box it up emotionally. We can explain it. Do you know how much easier it is for my son's grandparents to say that their grandson has "autism"? The first three years were spent mumbling a lot of, well he's "behind a little" and he has "low tone," well, actually, he's "behind a lot," and he "isn't talking," but he has a "great appetite," and he's such a "beautiful boy," etc., etc. Thank God we got that one little word so long ago.

I understand why labels can be a bad thing, how a label can stop you from growing, or allow someone to have a lower expectation of you. When someone called my son "mentally retarded" instead of "developmentally delayed,"  I had a visceral reaction, because, to me, one label is finite, and the other holds optimism. But I know it is ridiculous for me to let those few words hold so much sway over my emotions.

Labels help us identify each other, and if we are smart, we recognize that labels are really only for the person who is using them, so they can know how to interact with us. I can't really change what label someone puts on me or my son, I can only change my behavior. And ultimately, it shouldn't matter at all what words someone else needs to describe my kid; we know who he is, and he knows who he is. What will always be most important is that he gets what he needs, and whatever box we need to check, we will.

A version of this essay was featured in the Life section of

Friday, August 12, 2011

Thinking Person's Guide to Autism at BlogHer11

Shannon Des Roches Rosa

Shannon, Aurelia, Robert, Julia
Just one week ago, I spoke at the BlogHer11 Special Needs Minicon, joining moderator Julia Roberts from Support for Special Needs, speakers Aurelia Cotta and Robert Rummel-Hudson, and a room full of special needs community firebrands. I felt like the room was set alight by the rousing series of talks and full-room conversations about what knits the special needs parenting community together, and how we can best kick ass on our kids' behalf. TPGA editors Jennifer Byde Myers and Liz Ditz made notable contributions to the discussion, as did TPGA contributors Laura Shumaker and Jen Bush, and TPGA friends Jen Lee Reeves and Ellen Seidman, and so, so many others (thank you!).

You can check out the official transcript to get a sense of the session, but please know that said transcription is somewhat garbled and very much not verbatim. The podcast should be posted soon. 

Until then, I've slightly cleaned up the transcript's version of my own talk, which focused on community building using TPGA as an example, and encouraging other parents to actively demonstrate that we don't just love our kids, we respect them -- and we demand that other respect them, too.


I am really, really excited to be here with this team and with you because honestly, I'm here to suck your brains out. That's why I'm here. That's why we created the community called The Thinking Person's Guide to Autism, because, honestly, I can't do this by myself. I can't do this without you.

It can be hard to be Leo's mom. He's ten years old and has intense autism. Being his mom is a privilege and it's a delight, and it's also really hard sometimes. That's not to disrespect Leo in any way. I absolutely recognize everything he does to achieve so much, but I can't do this without your support, without the support of other parents, without this community where we can have conversations, where we can draw upon each others' strengths.

Most of us have not done this before; as parents, most of us came from outside the special needs community. We have to learn everything from scratch. And after eight years of blogging about Leo and his autism, I came to realize I have learned so much from all of you, from Leo, from the professionals, from the adults who have autism -- and I so wish I had known everything I know now at the time Leo was first diagnosed. How amazing would it have been to transplant my current brain into my body in 2003?

What I realized and we discovered is that there was a niche that had not been filled --  in our opinion -- in the autism community; what we wanted was an evidence-based hub of perspectives from adults with autism, autistics, veteran parents, new parents, and autism professionals. So we created The Thinking Person's Guide, standing in a parking lot outside of a coffee house.

The reason we did this is a combination of selfishness and altruism. I think they're both legitimate perspectives for us to have: We have to fight for ourselves, we have to fight for our kids, but we also need to make sure we are sharing what we know with the community at large. I think it's also really important to represent our communities as well as we can, to include the voices of as many people as we can. I mean, I have my own blog. It's my own perspective and fantastic folks come over and chime in. It might help somebody who's interested in iPads or has a kid like Leo. Otherwise, I'm not sure how much they will learn about from my blog.

So we created the Thinking Person's Guide to have conversations that include adults with autism and people from different backgrounds and different perspectives. As Robert Rummel-Hudson noted earlier, the special needs community includes all kinds of people -- we have our Palins, and we have our Kennedys. Unless we can learn from everyone, we're not going to be a fully-functional community, we're not going to be able to demand that people recognize our experiences and respect our kids so we can get them the services and the supports they need. It's not gonna happen.

A critical part of community building is our policy of respectful disagreement, which actually comes from having been involved with BlogHer for the past few years. (I'm BlogHer's contributing editor for parenting kids with special needs.) I don't care if you agree with me. I really don't. But I need to you respect me as much as I respect you. If we all just have the same opinions, if we all have the same experiences, we're not going to learn anything. Right? But we have to respect each other. We have to be able to understand that everybody's experience is valid -- and this is not easy. This is very hard.

But if you're willing to stick to your respectful disagreement guns, then phenomenal learning takes place. This is not to say we haven't had some knock-down, raging battles on TPGA -- we have. But we remain respectful. We have kept doors open for listening and learning. I would say that 95% of these battles resolve really well and we've actually had some deepen into valuable relationships, or at least to mutual respect.

Again, it's not easy. Personally, I'm pretty pissy, just so you know. I'm grumpy. I'm easily irritated but I'm also able to prioritize and I think the community is more valuable than I am [all our editors do]. And as a result we've had amazing learning experiences, because we've made learning and listening more important than defensiveness. Even though it can be really hard, especially if people attack you personally -- it's hard to just say, really? Especially when they're talking about your son or your child or your parent or somebody you care about or something that's a really deep emotional experience, it's hard. It's hard to stay cool. This is something that took me a really long time to learn.
But it's so valuable. These are the communities that deepen into places where people really value their experiences. I can't tell you how amazing it's been at The Thinking Person's Guide to Autism -- it's an experience I never could have anticipated. The kinds of reactions we get to posts both on the blog and on the Facebook community (I would encourage to you check out both); they're incredible. People come from all over the world. They have these amazing perspectives. Again, many I never considered.

I was especially surprised in terms of our social media community building, because I'm not a big Facebook user. My personal profile is private. It's probably not surprising that as the parent a child with autism, I have some fairly guarded social space -- I can get up and speak to you here because I'm talking at you, not having a conversation with you. And Facebook is very conversational. So I didn't see the value of Facebook right away.

But we opened TPGA up on Facebook thanks to Jen Myers. (If any of you need any social media advice, especially if you want to pay her, talk to Jen.) She said we had to have a Facebook page for TPGA. And so we did, and now we have thousands and thousands and thousands of hits on every Facebook posting, all these discussions with so many people coming and chiming in -- and this community is alive. It's vibrant. It's only a year old.

But the primary thing we found is a niche that people hadn't yet addressed. We didn't want to reinvent the wheel. Who wants to reinvent the wheel? It's hard. You need tools. But if you can find your niche, if you can maintain respectful disagreement, if you can moderate, if you can curate, if you can be just absolutely actively engaged while maintaining your standards -- you too can make something like this TPGA community we're so proud of.

It's so wonderful. It's such a great place to be; I hope you can all visit it today.

Wednesday, August 10, 2011

International Travel with an Autistic Child

L. Mae Wilkinson

Could this be the year you take your child overseas for a family vacation? Yes! …and you can have a fabulous time. Travel is enriching, educational and fun. It offers a break from therapy, homework, housework, deadlines and bedtime battles.  Travel is pure, quality, family time with no distractions. And in our case, our son always rises to the occasion by being on his best behavior. Here are some tips for those brave enough to travel internationally with an autistic child.

Practice. International flights are not for novices. A child (and his/her parents) will find it comforting to have had at least a few domestic flights under the belt before heading off on a long-haul trip. Using a combination of credit card points, frequent flier miles and fare sales, we’ve been traveling since our son was three years old. Starting out, we used pictures to preview and practice the transitions from car to parking garage; through security lines to gates; from jetways to planes; and from baggage claim areas to trains, subways and taxis to hotels. Through our travels, we’ve worked through the logistics of connections, delays, loud passengers, strange noises, turbulence, crowds, lost luggage, bad hotels and equally bad food. We have always managed to have a good time, and our son is now a seasoned traveler who doesn’t become unduly upset with the common travel annoyances.*

Destination. A major part of our success resulted from choosing the right destinations. For a first international trip, pick a country where English is widely-spoken and the customs are similar to those of the U.S. Layer levels of cultural diversity during the trip via restaurants and sight-seeing to practice for more exotic destinations in the future.

Price. The price of International travel can be intimidating. After the holidays, passenger traffic dries up, so airlines stimulate travel by heavily discounting fares for trips from the U.S. to Europe.  For a few short weeks in January, transatlantic fares are priced similarly to those of full-fare domestic tickets. The fares are usually valid for trips from January through early April. 

Prepare.  Prepare your itinerary ahead of time, and engage your child in the planning process.  What does he like --History? Nature? Sports? Researching the various sightseeing options is easy to do online and travel forums are a wonderful place to start. Trip Advisor members for example, are a great help, and many have posted itineraries from some of their favorite trips. My son is a whiz with maps, and he was able to help us plot out the most efficient routes to get from point A to point B.

Remember, don’t kill yourself trying to see and do everything. Make sure to build in some free time to relax.  Also, don’t be afraid to let someone else do the work for you -- take advantage of sightseeing tours to get a native perspective (and give yourself a break from driving!). 

Hotels and Accommodations.  Splurge. Finding the right hotel(s) are the most critical part of the entire process. After all, that’s where a family will spend the most time. My son is miserable at so-called ‘family’ hotels. The kids can be noisy, and the kid ‘camps’ are run by staff that have little or no experience with children with autism.

Generally speaking, the better the hotel, the better the trip.  Look for at least a four star property which is willing to give away free nights during off-season travel. We went during our son’s spring break—when most families are headed to warm, sunny destinations, Europe is begging for tourists. Many hotels also offer free breakfasts, which is a plus.

As you map out your sightseeing destinations, select hotels that can serve as a base of operations for day trips. For our trip to Ireland, we stayed just outside the city of Dublin and explored the eastern coast, then we spent one day exploring the middle of the country to visit famous sites such as Blarney Castle before setting up camp in Killarney, on the Western side of the island. For our last night, we stayed in a hotel close to the airport since we had an early morning departure.

If you plan to tour, keep the number of hotels to no more than two or three for a full-week vacation to minimize transitions. 

And one more tip: keep it small. The big convention hotels are noisy – people, elevators and clanking service carts can cause significant disruption during the night and nap times.  Smaller hotels tend to be easier to navigate, are much quieter and more intimate, like home.

You will usually fly overnight, and arrive at your destination in the morning.  Even if you’ve managed to sleep on the airplane, you’ll be tired and will want to stretch out after the cramped quarters. Many hotels do not allow check in until the afternoon, so try to find a property within a main area of exploration that allows early check-in.

Pack. Oh happy day! International flights usually don’t charge luggage fees, so pack away, as long as each bag doesn’t weigh more than fifty pounds, and you don’t go over your allocation of on carry-on and one checked bag per person.  So bring pre-packaged snacks, MP3 players, DVD players and headphones with favorite DVDs, crayons and card games, as well as a change of clothes and travel-sized toiletries on the plane. If you are traveling in the off-season, the weather will likely be unpredictable, so a rain poncho or light windbreaker is a must.

Protect.  Buy trip insurance, just in case something comes up or your child is going through one of those bad times where everything seems to be wrought with difficulty. That way, you can get most of your money back if you need to cancel your trip.

As extra protection, enroll the family in the US State Department’s Smart Traveler Enrollment Program (STEP).  That way, if a passport is lost or stolen, or if there are any other emergencies, the US Consulate can quickly make arrangements to help. Also make sure you add an emergency contact to your flight reservation or tour booking.  I also emailed the airport to let them know that if security happens to see us running through the airport, to please don’t shoot – we are merely chasing our wayward son, who might have been spooked for something he saw in the airport, and that he might be more susceptible to eloping and meltdown behaviors due to the time change. (By the way, he didn’t have any of the above).

While abroad, practice the same vigilance you would do at home, stay in safe areas and don’t go out late at night.

But most of all have fun.  These are the memories that your child will recall with joy for life.

* If your child is not comfortable traveling, keep trying. Begin with day trips by car, then overnight stays, then work back up to airline flights.

Monday, August 8, 2011

Fit to Work in the UK, but Where?

Rory Patton

Most sick benefit seekers ‘are fit enough to work," the London Evening Standard recently reported, in a very short summary of the report by The Department for Work and Pensions. The article quotes the Work and Pensions Minister Steve Webb as saying that many people are "able to work with the right help," and that, "Those who cannot work will always receive our unconditional support but for those who can work it’s right they get the help they need to get into employment."

The implication of the article seems to be that people are claiming benefits dishonestly. The Work and Pensions Select Committee expressed concern at the way claimants are portrayed by the media as “work shy.” The report of the select committee also raises concerns that the new procedures have not been adequately explained to claimants leaving some disabled people concerned that the goal is merely to cut their benefits.

I would like to draw the attention of our press and parliamentarians to some statistics on the National Autistic Society website:
  • Only 15% of adults with autism in the UK are in full-time paid employment.
  • 51% of adults with autism in the UK have spent time with neither a job, nor access to benefits, 10% of those having been in this position for a decade or more.
  • 61% of those out of work say they want to work.
  • 79% of those on Incapacity Benefit say they want to work.
The Government wants people on Incapacity Benefit to be helped into paid employment, 79% of those on Incapacity Benefit say they want to work. The question has to be, into what work will people with autism be helped?

Many of us are perfectly physically capable of working, many of us are more than an intellectual match to many in well-paid careers -- so why are so many of us out of work? What allowances are not being made that prevent us from losing our employment? It is perfectly possible for someone with an autism spectrum disorder to work well for long periods, but what happens when that person has a melt down in front of customers, what happens when a sudden tic causes a tray of crockery to drop, what happens when that person's ability to understand what people are saying suddenly closes down?

It is comparatively easy to make adaptations for physical disabilities, even for someone with a consistent mental problem, but how do you make allowances for something which happens suddenly, without warning? One moment a person on the spectrum may be working with perhaps a degree of agitation, the next an unexpected stimulus may propel them into conduct considered cause for dismissal.

It is good that he Government wants to help people into work, but it is essential that the jobs into which they help people with autism both take into account the problems of the person and guarantee them security of employment. A job that disappears suddenly may well be worse than no job at all.

Friday, August 5, 2011

I Want to Tell You a Secret About Autism Awareness

Shannon Des Roches Rosa

I want to tell you a secret about Autism Awareness. I'm telling you because you have a stake in the autism community; whether you touch one or many lives, you can change them, you are powerful. And, like me, you care. You want to make a difference -- for yourself, for your child, for someone you love, for someone who depends on you. And you can make a difference, you will, if you keep this cornerstone of Autism Awareness in mind at all times. Ready? Here it is:

Behavior is communication. That's it. That's all. That's everything.

If you put your mental backbone into behavioral awareness, into trying to understand why a person with autism, or a person associated with autism, behaves the way they do -- if you can make yourself truly aware of that person's needs -- then that is when the connections will happen, that is when you will make a difference, that is when awareness can leapfrog goodwill, and translate into real-world benefits and positive actions.

If you're a parent of a young child with a new autism diagnosis, a behavioral awareness mindshift can be hard. It's not how most of us are taught to think about parenting. And you're already struggling with so much right now: you love your child, want the best outcome for your child -- yet you've been handed an autism label with all its associated baggage and media fearmongering.

You need to remember that an autism label is just that -- a label. It can help describe your child, but it doesn't define your child. You need to set the label aside, enlist it as needed, and instead hyperfocus on what your child does, and why they do it. You'll probably have to jettison some lingering hopes and dreams about your child's future to focus on your child's reality -- but since parenting always involves a large amount of eventual ego-disentangling, assure yourself that you're actually ahead of the curve.

You can learn a lot from parents who actively practice behavioral awareness, parents like Todd Drezner, who directed the must-see autism understanding and acceptance movie Loving Lampposts; Kristina Chew, mother of the legendary and now teenage Charlie; Jennifer Byde Myers, whose son Jake has a constellation of diagnoses besides autism; and author Laura Shumaker, whose son Matthew is legally of drinking age.

But, the behaviors! They don't always make sense, not on the surface, not if you've never encountered anything like them before. Does your child scream if they can't wear their favorite shoes? Can they talk happily (and indefinitely) about sprinkler systems or precious gems or superheroes? Do they enjoy fondling material of certain textures without regard for where or on whom that fabric may be located? Do they fear the toilet, the market, the dentist? Make understanding those behaviors the focus of your approach. Decide which quirks are quirky, and which are legitimate impediments to learning, self-care, health, and socialization -- then put your energies into helping your child get past the roadblocks.

Get professional help if possible, from a behaviorist who can explain that yelling at a child to stop unspooling toilet paper or "punishing" a child by ousting them from circle time may actually be exactly what that kid wants -- you may be unwittingly helping perpetuate undesired behaviors. But know that not all professionals are going to be in tune with your child's behaviors, no matter how much training and experience they've had. Be careful about ceding authority to a professional whose own behavior is more about showcasing their knowledge, and less about applying their observation skills to help you or your child.

Most autism community members who practice behavioral awareness will eventually encounter autism parents who disagree about best autism practices. And that's OK, too -- if you understand those parents' behavior. Are they truly interested in giving their child the best life possible? Do they fight hard for educational placements and evidence-based supports? Are any of their chosen therapies actively harming their child? If the answers are "yes," "yes," and "no," then you likely have more in common with those parents than not, and the relationships are worth pursuing. You don't have to agree with autism parents about every last thing -- I doubt that any useful, forward-thinking community is a Shangri-La of consensus. But you do need to be wary of parents who place their egos, their fear of autism, and their desire for a "typical" child above the needs of the actual children in their care. Still, you should support those parents by listening, if they'll let you -- with enough positive role modeling, they may swing round and start investing in behavioral awareness, their kids might receive respect in addition to love, and our community will strengthen and become more whole.

When I feel the need to better understand my son Leo's behaviors, or when I'm feeling low because despite his and our best efforts, we cannot solve his behavioral crises, I seek solace in the experiences of people with autism. Sometimes I use Twitter -- a great resource for queries both specific and general (many of my Twitter conversations have deepened into cherished friendships). Sometimes I search those same autistics' blogs or message boards as a grateful lurker. I don't always find agreement -- peoples' backgrounds and experience vary, as they do in most populations. And not all people with autism are interested in being role models or sounding boards for parents like me, which is fair. But I almost always come away with greater understanding, useful information, and a renewed awe for the generosity of the autistic community.

Behavioral awareness is not a magical mitigation tool. We still have tough times: Leo finds summers and their schedule disruptions disorienting and distressing, and sometimes he is inconsolable. My husband and I do our best to understand why Leo gets so upset, and sometimes Leo tries to tell us. But our boy doesn't always have the language he needs; at times, he cries himself to sleep out of frustration and exhaustion. It breaks all three of our hearts.

I know these episodes will get easier as Leo's communication skills improve. I also know that they used to be commonplace, especially when Leo was little, before we understood so many of the behaviors that make our wonderful boy tick, and before we had the awareness to appreciate our son for exactly who he is.


A version of this essay was previously published at

Wednesday, August 3, 2011

My Baby Cried Louder than Science

Jennifer Byde Myers

In our family, we make medical decisions using science, facts, and data, and we believe in keeping our children healthy, so we vaccinate. I have never thought that vaccines caused my son to be autistic.

Except for that one time.

Lucy was a perfect baby; not that she never cried, or blew out a diaper, but she held her perfect little round head up, and rolled over on time, and she just looked. so. perfect.

When she was four months old I took her for her routine vaccinations. She was in the 90th percentile for height, the 75th for weight...right on track, and the nurse gave her 3 shots: HIB, Pneumococcal Prevnar 7, and inactivated  poliovirus vaccine (IPV) She got little round bandages stuck to her little chubby leg. She scrunched up her face to cry and I nursed her a bit, and tucked her back into her precious outfit, and put her in her little car seat where she slept for two hours.

When she woke up at home I reached in to get her and she began to wail. "Poor thing, must be starving"... so I pulled her close and set about to nurse her... and she twisted her head this way and that, thrashed about and screamed. And screamed. And screamed. Every time I tried to comfort her, cradling her in my arm like she was a bouquet of flowers, she just screamed at me. She wouldn't eat. I panicked.
Oh my God. My child had her shots two hours ago, and now she is a different child. This is how it is, one minute the child is there, then they're gone; that's what I've heard. My daughter has autism. Oh my God.
In an instant, every single piece of science went out the window, and anecdote took hold. My science was my child,  my screaming child.

I called the front desk of the large-ish medical foundation, and put an urgent message in to the doctor I had just seen. I made sure the nurse wrote down "adverse response to vaccines."

The doctor called me back within ten minutes, heard the sound of my voice, and Lucy screaming in my arms and told me to rush right back in. The short ride to the doctor's office is only longer when I am carrying my children in utero, and my contractions are three minutes apart.

Lucy was calm in her car seat "bucket" on the way to the office, but that was no consolation to me. When he was younger, we spent years driving our son's autism around trying to calm him down enough to sleep. A kid that is quiet in the car doesn't mean anything. We used to replace the tires on that car almost as often as we changed the oil and my son still screamed when the car stopped.

We were ushered into an exam room, and I left Lucy in her car seat until the doctor came in just a few minutes later. The doctor looked calm, collected and very worried all at the same time. She quietly said, "Show me exactly what's happening."

Lucy squirmed and whimpered when I pulled her out of her sweet floral-patterned bucket. I laid her on my lap then picked her up and brought her close to nurse. She started screaming and thrashing. Her face turned all red. She was not the same baby that the doctor had seen a few hours before. The doctor helped Lucy try to latch on, to no avail. I got tears in my eyes.
Oh my God. Oh my God. It's all true: Vaccines cause autism. Jenny McCarthy, Age of Autism, Green the Vaccines, Generation Rescue... they are all right, somehow, with no scientific evidence, and I just gave my precious baby all of those shots. I broke the baby.
I sat there, sniffling and holding my crying child,  pulling her closer and closer to me, afraid now that I would drop her and make things even worse.

The doctor took a step back, sat on the rolling swivel stool that all kids love to play on, and moved herself across the floor towards me again. She very gently took my left hand and moved it slightly. I was still cradling Lucy's head in the crook of my left arm.

Lucy turned her head towards my breast and started to nurse. Her body was still a little squirmy, then she calmed down and sucked away, trying to fill her tiny stomach up.

"You were pinching her thigh- where she got the shots. You were just holding her leg, and pressing right where she got the shot." I started to cry, not a lot,  just enough to release all of that terror that had built up. "I think you are okay now --that she's okay. Call me later if...just call and leave a message and let me know how things go the rest of the day. And come back in if you think it was any thing else."

"You know I'm not a paranoid mom? You know I wouldn't have called, but Jake's autism, and, and, we had the vaccines and, and, now I just feel so stupid."

"Don't feel stupid. I knew exactly what you were thinking, and I know you're not a paranoid mom. You're not crazy. It's okay. All of that flashed in my head too; but now we know. So, let's not pinch the baby's leg any more and everything should be fine. Sit awhile and feed her. Take a deep breath." And with that, she left the room.

My baby girl does not have autism. One day, after her vaccines, she screamed a lot when I squished her little leg.

I can't imagine how I would feel if Jake had been a "typically developing child" as some parents of children with autism believe their child was; losing language and the ability to communicate their needs in a matter of hours. Jake was different from the beginning, the very, very, first-day beginning; at least I thought he was. So I have never felt like some thing was taken away, or that he was somehow damaged. He has always been a whole, healthy, child whose brain worked differently. But that feeling of thinking you've had something taken away must be such a painful experience for those parents; the parents whose recollections are that their child did change overnight, and stayed changed and not because of a little boo-boo on a chubby baby leg. But I know that's just not how it happened with my son and his autism. I'm guessing, in our case, as in many or even most other families, this is a genetic issue which will be brought to light in some number of years down the road. Could there be an environmental insult? Maybe, probably. I'm sure it's complicated. It's surely more than one thing. That's why I'm waiting for the data before I go blaming anything.

What worries me is that I am a person who does believe in science, who has weighed the whole of evidence against the righteous hand of anecdote, and I have settled firmly on the side of scientific proof, not only for the health and welfare of my own children, but for society at large. If I could be swayed in a moment of dismay because of all of the "Tabloid Medicine" that abounds, what happens with someone who gives the pseudo, or non-science, equal weight? Those people who think that anecdote is somehow equal to a properly done scientific study? If all of that can go running through my head pell-mell given my daily practice of relying on data in my decision making, then what happens in those other families? I was so quick to turn to the anecdote and to rumor in that moment, and I'm someone who has access to good information. 

But good information can be harder to find. It's difficult to compete with celebrity endorsers and personal experience. It is a hard sell when all you have are numbers, and black and white pages of scientific jargon. It's hard when the scientists aren't on the talkshow couches or Twitter sharing their information.

It's time for us to all turn towards science. I'm not saying we should abandon completely the spiritual, or the intuitive parts of our nature, because I am aware that some things cannot be fully explained by science, and most moms know their kid better than anyone else ever will. Don't throw out everything you have learned through life experience, but, in general, as a rule, why don't we all trust the science just a little bit more, and guess a little bit less. And those of you who do vaccinate, or use medications, or believe in the scientific method, let's start talking about it. Let's not keep our mouths shut when people start bragging about how echinacea cured their cold in "just 7-10 days", or that the oscillococcinum they took last year, prevented them from getting the flu last month.

And perhaps we should start insisting that the science in the news be reported by someone with even a modicum of understanding of science. If that's all too much, then at the very least, let's all decide, right now, that celebrities will have no part in the decision-making process when it comes to making choices for our health, and our childrens' health.
A version of this essay was originally posted at, Jennifer Byde Myers' personal blog.

Monday, August 1, 2011

I Feel for You

Carol Greenburg

I feel sorry for those who think autistics have no ability to empathize. In my case at least, Asperger’s left me too vulnerable to the emotions of others.

When I was a little girl, I smiled until my face hurt. I was nowhere near as delighted as the constant smile seemed to indicate, but I was not miserable either. The unrelenting  smile was, I now believe, the product of rigid autistic thinking, which had led me to a false conclusion that like everything else in my world, there was a correct and incorrect path. Blocks must be stacked in a certain formation, every imaginable question had right and wrong answers. By that admittedly skewed, reasoning, the same principal must have applied to emotion. There was one correct emotion: happiness, which was always expressed with a smile.

Other emotions existed, that was irrefutable. Whatever other explanation could there be for tears or frowns? I avoided wearing such expressions on my own face though, because they and the emotions they represented were obviously incorrect. However I couldn’t seem to control the emotions of others, which was maddening, like sudden mind-reading abilities in the science fiction stories to which I  was always so drawn, a terrifying telepathy that inevitably landed protagonists in the equivalent of their planets’  rubber rooms. 

I would not describe this way of thinking as healthy. I wasn’t simply irked when an adult or another child would refuse to comply with my orders to smile, I was furious and terrified and would not, could not, calm down until they did. What complicated matters more then, and continues to complicate them to this day, is my impaired ability to read facial expressions and body language. Like many autistic people, I’m capable of seeing macro-expressions, broad smiles, uncontrollable tooth-grinding rage, but more subtle expressions remain a mystery to me. I still can’t tell if the not-entirely happy person next to me is mourning the loss of a beloved friend, or the loss of a just-manicured nail tip.

Although I’m better equipped to handle all the input as an adult than I was as a child, between the sensory overload of loud music, bright lights, forced conversation (especially that autistic bĂȘte noir, the inescapable natter of small talk), my sensory processing abilities are already taxed. On top of all that, I often feel people feeling at me. Whether they notice my presence or not, I notice theirs, and my ability to process their emotions -- the origin and nature of which I still have difficulty interpreting -- causes me distress.

It’s a mistake to confuse an inability to sense with an inability to care. To the extent that I am able to resonate with other people’s emotions, I care intently. Further, I am aware that I am not aware of what people are feeling and compensate by the seemingly simple but actually complex method of inquiring.

I don’t like to think about the part of my life in which happiness was the only correct emotion. I have never written about it. But I recently had a conversation with one of my son’s teachers that sent chills down my spine. She told me about a little girl with the same diagnosis as mine, Asperger's. Like me, she has always been verbal, but when someone she cares for does not produce a smile that lives up to her expectations she will crawl up on their lap and try to force their lips into what she considers a properly happy expression. I remember doing that .

My autistic son is minimally verbal, but there is no doubt in my mind that his empathy is as powerful of as that of those who can articulate it. He’s been using what words he has to ask me if our cats are happy. He’s been asking his teachers if a particularly close friend of his in school is happy. Not curiously or occasionally, but frantically and repetitively. No amount of reassurance seems to soothe him for more than a moment when he gets into one of these loops. Medication helps; we also have high hopes for social stories. Since we want to teach him that he has some power to influence others positively we make suggestions about concrete things he can do to help. Finally, we emphasize the transitory nature of emotion.

I suspect the notion that whatever is going on in a given moment will last forever is a common autistic fear. I have it, too. So when my son seems to be frightened by his own reactions to others’ emotions, I stroke his hair and I remind him that smiles and frowns are like rain and sunshine. Neither lasts forever. Just when you think the weather cannot ever change, it does.

I have faith that my son will resolve this confusion just as he has conquered other perplexing aspects of a world not tailored to his needs, but he’ll need help. He needs to learn that he does have power, not to change the weather of people’s moods, but to react to them in a compassionate yet not all-consuming way. 

I am working on that skill myself, very slowly improving, but I believe his prospects are better than mine. What I do know from my own experience in this realm, and what I strongly believe when I observe him, is that pushing for greater empathy in an already hyper-empathetic child will not help and might even cause more distress and confusion for him. Empathy he’s got. Boundaries are what he needs. Shoring up some kind of emotional self-defense in one of the most caring children I can imagine, that’s what all of us who love him will spend the next few years doing. As parenting tasks go, I think it beats the hell out of trying to foment empathy where an exhausting abundance already exists.