Friday, March 29, 2013

Colin Meloy and Positive Autism Parent Role Modeling

The autism parenting community could use more role models like singer, musician, and writer Colin Meloy. We spoke with him earlier this month about the awesomeness of his son Hank, why it's so damaging when parents publicly promote negative messages about autism and autistic people, and why autism parents should put their energies into better autism accommodations and resources instead of "fighting" autism.

Colin and Hank
TPGA: Did you have autism in your life prior to becoming an autism parent?

Meloy: No. There wasn't any, or very little --  not in my immediate family. So my son Hank's diagnosis was blindsiding to a certain degree. But I had also never known autism to be necessarily negative.

When I recall my B.A. (Before Autism) era, I hung around with artists and musicians in the Pacific Northwest, fellow introverts and weirdos, and there were certain artistic temperaments that were often socially awkward, kind of obtuse and mysterious. So artful and "indie" that they had no filter.

Celebrating being quirky?

Yeah, to a certain degree. Obviously it's a very different experience becoming a parent of a kid on the autism spectrum. But just being a musician, I was already accustomed to being around socially awkward people.

When I first started educating myself about autism, I learned that it was supposedly more in the engineering and scientific communities -- but I think there's something to be said for the art community as well. Both my wife Carson and I are a little bit introverted in our ways, and I think it's one of the ways we are able to connect with Hank and understand where he's coming from. Because while neither of us are really on the spectrum, we both have our moments of real shyness and some difficulty in social situations, which I think is common among creative people.

Is performing in front of large crowds then a different kind of interaction for you, different than interpersonal interactions?

Yeah, I think there's a switch there. I kind of move in and out of being able to spend a considerable amount of time with other human beings. It depends. To a certain degree, becoming more of a public figure and being on stage a lot more has led me to a more private life. And I don't know if any of my social awkwardness is because of that. But it doesn't affect me on stage, I don't have stage fright -- there's something that takes over when I get on stage, and that's mysterious to me. Sometimes it's easier for me to address a crowd of 1,000 people than a room of ten. That kind of makes sense to me.

Can you talk about how you felt around the time of your son Hank's autism spectrum diagnosis? How you felt, your reactions?

It's the sort of thing that once you start noticing or someone suggests a possible diagnosis, you start seeing that diagnosis everywhere -- and that's also because at the time it was everywhere. You couldn't avoid it, which is sort of a great thing -- but then there's also the potential for a lot of negative stuff to filter in there as well.

He wasn't meeting milestones or doing so much later than other kids. Our pediatrician at the time said, "well, he's waiting to master these things before he's really doing them." Things like walking and talking. But she also suggested we go see a speech path[ologist], and figure out what the language delay was all about. After a few months of work, she decided we should probably put Hank through the autism screening. So we got the diagnosis when he was about two and a half.

I feel like there was so much leading up to that! The initial suggestion, then going to see the speech path, then the autism screening -- that buffered it a little bit and we were able to process it, so by the time we were even going into the screening, I kind of knew. It just didn't seem like there would necessarily be any other outcome.

Then you really have to come to terms with yourself, and your child, and all the expectations that you had for your kid -- and then you realize how kind of ridiculous that all is, and how much of it is about you, and how much of it should really be about your kid. The idea of 'horizontal identity' makes so much sense to me. But it's a major transition that has to happen in your head, as you step back and have to come to grips with certain things.

Can you talk a bit about the accommodations that you see society making -- or not making -- for kids like Hank? Specifically in areas like schools?

My experience as the parent of a kid on the spectrum is that there are many challenges. Challenges that at times seem just impossible. But I don't think that they are necessarily that different from challenges other parents face. But they sometimes require different and more creative solutions.

As I look back and catalog all the meltdowns and intractability, and social issues with our friends who had kids of the same age -- I think the biggest challenges have actually been in dealing with the structures that are supposed to be in place to accommodate these kids.

Our biggest battles, honestly, were insurance battles earlier on, trying to get coverage for these basic therapies recommended by his pediatrician and the people at the clinic who had diagnosed Hank and who were working with him. Just to get those therapies covered, we had to go all the way to the head of our insurance company, and provide evidence that these things were actually making a difference.

And now that Hank's a first grader, the next battle is trying to figure out how the Portland Public Schools will accommodate him, and recognizing that the special ed system in is fairly broken. You are extremely limited in your choices -- there's a "one size fits all" with special ed in this district, and if any kid doesn't fit that mode, it's a kid on the autism spectrum because they are so vastly different -- it's impossible to fit them into a system that is supposed to fit all comers. That's been one of the hardest things to navigate.

Portland is a pretty forward-thinking and progressive place in most areas, but it's also totally broke, and the system is really underfunded, and it has a pretty big population to serve, and it hasn't done a really great job meeting those needs. I think it's just really strapped. There are other, smaller towns like Corvallis, and some of the outlying suburbs that have more resources, but the metropolitan area is just really struggling. Portland public schools are not in great shape.

You go to these classrooms, and you can see ways for them to be improved. Hank was in a self-contained classroom for his kindergarten year, and every time he walked in there, just to get him to do the basic things like take his coat off and put his lunch in his cubby were impossible because there was so much stuff, there was so much clutter. It was not only trying to accommodate kindergarteners but first and second graders, because it was the Resource Room. It was also the one self-contained classroom in the region -- there's only three of them that would service his IEP in Portland Public Schools, and we had to drive 30 minutes, or would require an hour-long bus ride. And for a city the size of Portland, that just seemed ridiculous.

So the class had all these kids -- not just kids on the autism spectrum but with learning disabilities and behavioral issues -- and what worked for some kids didn't work for others. It wasn't conducive to Hank's learning -- it was impossible to get him to focus on anything. We had this idea that the perfect class for autistic kids would look more like a yoga studio -- remove everything. But there's just no room and no money for anyone to come in and creatively re-imagine what that classroom could look like, particularly for kids on the autism spectrum.

There are a few private programs in the area, and some look dreamy, are essentially academies for kids on the autism spectrum -- and I'm sure the tuition is absurd -- and then you go on the website and find out that the founders met at a Defeat Autism Now conference.

Or another academy will do a lot of ABA and good work, but on their blog, they'll have not only these intense anti-vaccine screeds, but also about anti-fluoridation. What does fluoridation have to do with the work they're doing? So do we count these places out because we don't agree with their philosophies?

Do you think part of those philosophies have to do with being in Portland?

Portland is mystifying. You have all these perfectly sane, educated, intelligent adults just making really weird decisions.

Tell us about the awesomeness of your son Hank.

Happy to do that! Everyone's kid is different, and for some people it's not always easy to see the awesomeness of your kid -- it's not as clear, as revealed. And I have sympathy for that. But I would say that, from the beginning, we've really tried to gird ourselves to open ourselves up to Hank and who he is, despite his challenges and despite the fact that his way of existing in the world was inevitably going to be different from our own.

As far as I can tell, autism is as much a part of Hank's true identity as his intellect, and his wit. I really can't see any place where that could be separated. I read about people hating autism or wanting to defeat autism or cure autism, but I think that, if you were to go back before [Hank's] diagnosis and remove what made him autistic, we would certainly have a different experience, but so would we if you waved that same magic wand and removed any other part of him. 

We did get a chance to see the miraculousness of the autistic brain: he started reading before he was three. When we were doing all these therapies for speech, we started realizing that he was reading words. One day when he was just shy of his third birthday, I remember holding up a newspaper and pointing to the word 'moon,' and he said "moon!" Same with the word 'school.' And we said, "Well, that can't be, that can't be true." But it was.

His actual medical diagnosis is PDD-NOS, which puts him on the autism spectrum. He also has the TAG [Talented and Gifted] designation from Portland Public Schools, which he got in kindergarten because he scored off the charts -- by that time he was reading novels and encyclopedias and things.

He just loves books; that was actually one of the first signs that he might be autistic. Carson was reading about someone whose kid had been recently diagnosed, and instead of playing with toys would just sit by the bookshelf and look at books all day. And she looked down from her laptop, and there was Hank pulling all the books off of our bookshelf. He would spend hours just looking at books. Even though he's gone in and out of astronomy and trains and mythology and geology, and we're always waiting for him to become really fixed on one big particular thing, but he hasn't -- his fixation has always been books.

He has this incredible sense of humor that arose while reading joke books. And we figured out early on that he loves word play and puns -- he's working on his delivery, he's getting better. We were steered by therapists who said, "toy with that stuff, it's a good way of coaxing language out of kids who might be reluctant."

I also think he has an incredible perspective on the world. He sees it very differently than the rest of us, and is kind of a card in that way. I think he is deeply, deeply weird, but we are into weirdness, are open to it, and find it charming and smart.

I think he's just been this amazing light in our life.

Does Hank enjoy your and Carson's Wildwood books?

Yeah, he loves them. He always goes to the battle scenes because he loves calamity. And he's become more involved in them. I read the pages that I write to him every night, and before he would passively listen, but now he will tell me, "Oh, that word doesn't work" and then we have an opportunity to think about synonyms and a better way for a certain sentence to be written. And he's actually been suggesting some good ideas, and I've been incorporating them, and he's super-delighted when that happens.

What are your thoughts on the way autism is portrayed by the media?

You see a lot of press about autism, and some of it's good, and some of it's bad. And I would say that those pieces that fixate on how difficult it is for parents of kids on the autism spectrum -- I can see why there is this desire to vent, a desire to get your story out -- but I wish people would consider what kind of potential harm that can cause. Not only to the autism community, but maybe to a parent who is just receiving a diagnosis -- the last thing you need is to be scared, or to be terrified, or to be told that "this parent's life is a living hell." That's making the process that much more difficult.

Anything that's going to inspire resentment towards your kid, that's the last thing you need. You need to be focused on the love, and the things you need to be doing as a parent, and your commitment to your kid.

On top of that you have kids like my kid -- who can read and is verbal -- but is clearly very autistic. There is no doubt Hank has autism, and severe challenges that will likely be with him throughout his life -- and the last thing we'd want him to see or hear or read is how this thing that is a part of him, part of his identity supposedly makes peoples' lives a living hell and tears apart families.

It's just awful, and I wish these people would consider that -- how a kid on the autism spectrum hearing that stuff would react, and how that would make him feel about himself, in a world where he's going to have a hard time having people accept him anyway.

This is not to say that parents can't bitch and moan and say "this is f***ing impossible" -- because sometimes it is, because that's restrictive. Scream it to the heavens! This is hard! But don't write about it on your blog. And be careful about the context you're writing this stuff in.

People have an incredible interest and desire to help, and it's just being misdirected -- we could be focusing on better classrooms for kids on the spectrum, we could be focusing on better services for transitioning adults on the spectrum.

The more you create fear mongering and resentment towards the autism community, the less good you're doing.

Monday, March 25, 2013

What Reading Self-Advocate Blogs Does

Alyssa
yesthattoo.blogspot.com

Trigger Warning: Mentions of abuse, tragedy/burden talk

There are plenty of autistic people blogging, mostly adults since it's mostly adults who blog. Most of the blogs I've read, most of the autistic adults who are involved in advocacy that I've talked to, most of the parents who "get it" say how important it is to listen to autistic adults.

Some people might take the "what's in it for me" approach. I'd prefer that self-determination and the right to be included in conversations that concern your own future be reason enough, but just in case it isn't, here are some answers of how it really does help parents to read self-advocate blogs and how it really does help kids when their parents "get it," which is a pretty common result of reading them.
  • You can have hope. Too many of the resources you will find about autism paint a rather dreary picture of a person who will never do, well, anything. Self-advocate blogs and blogs written by autistic adults that don't have any more relation to autism than "the writer is autistic" both give back the idea that yes, autistic people really can be satisfied with their lives. It's not even that unusual. It also gives the idea that somehow becoming less disabled isn't a prerequisite for being satisfied with life, which helps with seeing your kid as something other than a tragedy.
  • You can get a good idea of what needs to change so that your child will be OK as an adult. Unfortunately, many of us have had some bad experiences. Reading about them is hard. Imagining that something like that could happen to your child if societal perceptions of autism don't change provides quite the impetus to make sure things do, and it can help you realize that the way you treat autistic adults is, well, the way you are suggesting autistic adults should be treated. That's how you're suggesting people treat your child later.
  • You can get a good idea of what therapies and skills your child will find most likely find useful later (communication skills of some type, ability to speak up about problems, ability to remove oneself from a bad situation) and which ones are less likely to be useful/more likely to make your kid really, really angry (suppressing all stimming, working towards a career that is not interesting, being taught not to have boundaries.)
  • You might get a better idea of what is going on in your kid's head. Plenty of people talk about how frustrating it is to have no clue what their kid is thinking, and while we don't know exactly what's going on in any head besides our own, there is a good chance that at least one of us has reacted similarly in a similar situation, and it's reasonable that something similar was going through our heads at that point.
  • You might get a better idea of how your kid can communicate better. (Typing is a favorite of mine, and is generally worth a try.) You can get ideas for things you can try with explanations of exactly how and why it helps and how to tell if it is working.
  • Being able to think of your kid as something other than a tragedy and a burden is good for your mental health. It's also good for your kid's mental health, since knowing that your family considers you a tragedy and a burden really sucks. Like, this is of the level where people have committed suicide over being considered a tragedy and a burden. Talk to any parent of a child who died of cancer -- a living child is much better than a dead one, always. Go read Don't Mourn for Us while you're at it -- it covers the idea that you have an autistic child, and the neurotypical child you may have expected never existed, is not trapped inside the child you have. Having a mentally healthy autistic child is much better than having a psychologically traumatized autistic child, too. Basically, realizing that your kid being autistic is not inherently tragic is going to be good for both your and your kids mental health.
Long story short, as long as your goals for your child come anywhere near lining up with the ones most parents of neurotypical kids I've spoken to have (wanting the kid to be happy, satisfied with their own life, not in danger of dying due to physical/medical needs having been neglected, not traumatized, not getting abused) reading the blogs of autistic people is a way to realize that all this is possible -- and give you both hope that this will happen for your kid and ideas on how to help your kid make it happen.

Sure, you won't be there to take care of your child forever, but if you help your child learn to take care of his or herself and to get help from others when needed, you won't need to be.



Previously published at AutismNOW.org.

Friday, March 22, 2013

April 2013 Is Autism Acceptance Month on TPGA

This April will once again be Autism Acceptance Month on Thinking Person's Guide to Autism, in the spirit of Paula Durbin-Westby's Autism Acceptance Day and Month initiative at autismacceptanceday.blogspot.com, and ASAN's Autism Acceptance Month project.

We want to help make April matter, in terms of helping spread the word and further acceptance and understanding of autistic experiences, happiness, and rights -- and we'd like you to participate if you're willing and available. Here's what to do:


Please send us a post or captioned picture that represents the message or story you'd like thousands of people to see and/or hear for Autism Acceptance Month. It doesn't have to be an original submission (we understand that everybody wants something from our community members during April), but you do need to own the copyright. Submissions can be emailed to thinkingautism at gmail dot com.

That's it. We'll publish a new essay, story, or photo every day in April. WE hope you participate, and please spread the word!

(If you need ideas, please feel free to browse last year's TPGA Autism Acceptance Month Autistic Slice of Life profiles.)

Please also note ASAN's guidelines and recommendations for Autism Acceptance Month:
"This April, ASAN will be working with activists and community members across the country to help launch Autism Acceptance Month, a celebration of Autistic culture and community. We want you to help us by organizing a local event in your area for Autism Acceptance Month and letting us know about it by e-mailing acceptance@autisticadvocacy.org."
And if you see anything you think we should share on TPGA Twitter or Facebook during April, please send that to us as well.

Looking forward to the most progressive April in the autism communities' memory,

-TPGA Editors

Wednesday, March 20, 2013

Autism Shock Therapy Practiced In US Is Torture, Says UN Official

Emily Willingham
www.emilywillinghamphd.com
www.forbes.com/sites/emilywillingham  

Trigger warning: discussion of Judge Rotenberg Center, aversives, mistreatment of autistics

Some practices used as “therapy” for autism in the United States amount to torture, a U.N. representative says. The U.N.’s Juan Mendez is the organization’s special rapporteur on torture, and in his report examining torture worldwide, he’s called out the only facility in the United States that uses “skin shocks” to ‘treat’ people with severe mental illness or developmental disabilities, including autism. That facility is the Judge Rotenberg Center (JRC), formerly the Behavioral Research Institute. While it once was located in California and then moved to Rhode Island, the facility is now sited in Massachusetts. Mendez expresses concern in his report (p. 84) that if Massachusetts becomes too hot to hold the JRC, the center might simply relocate again, and he urges action at the federal level to end the use of such aversives nationwide.

But wait, you might say. What does shocking people have to do with autism or mental illness treatment in the United States? If you look at the science, not one thing. But the JRC is the reality. This center has been the focus of considerable controversy, especially since the release of this graphic and disturbing video of a teenager being “treated” at the center with what the JRC, in its posted response [PDF] to accusations, calls “skin shock treatments.”

The center, which a report says “brought in $55 million in revenue in the year ending June 2011,” received a warning from the U.S. Food and Drug Administration (FDA) stating that the devices the staff uses to shock patients–who wear a backpack wired to various parts of their bodies for easy zapping–violate FDA regulations. The devices, which center staff created and designated as “Graduated Electronic Decelerators” (GEDs), were approved in 1994. However, since that approval, the JRC team has jacked up the voltage on them. It has done so twice, in fact, putting them out of compliance. Their rationale, it seems, was that the original device was just too weak to hurt enough.

According to reports, some parents argue that these shocks are the only effective therapies for their children who engage in harm to self or others. But this story, “The Shocking Truth,” by Paul Kix, which appeared in Boston Magazine in 2008, describes the use of these shock aversives to punish a young girl with cerebral palsy for moaning and reaching for a staff member’s hand and as a consequence for another child who closed his eyes for more than five seconds. The story is a tough read, and there are other, unconfirmed stories from residents who have described similar experiences at the center.

Unfortunately for some ‘students’ at the center, the end doesn’t appear to be in sight. Mendez says in his report (p. 83) that while
the Commonwealth of Massachusetts Department of Developmental Services (DDS) approved regulation changes that limited the use of Level III Aversive Interventions (including skin shock), this new regulation does still allow the use of electric shocks for those students who had an existing court-approved treatment plan as of September 1, 2011 (115 CMR 5.14). Under the revised regulations, only new students in Massachusetts are protected from Level III aversives, including electric shock or prolonged restraints.
In other words, these interventions are bad enough that no one should have them administered and should be protected from them, but students who were unfortunate enough to have them in a treatment plan already are … grandfathered in for torture?

What science backs up the use of electric shocks to the skin as an appropriate way of modifying behaviors? Not much, unless you’re a rodent. First, this “therapy” is not to be confused with electroconvulsive therapy which, although controversial, is administered to patients under general anesthesia and involves electric currents to the brain to induce seizures. Case studies and some reports indicate efficacy of this extremely controversial treatment for depression and other disorders. But the kind of shock used at the JRC is called “contingent shock,” and the small group of authors, including those affiliated with the JRC, who publish on it do so in rather chilling language. An example comes from a study (abstract only) led by JRC collaborator P.C. Duker. The authors were trying to determine whether or not shocks administered to the same area would be more effective–i.e., cause more pain–than repeat shocks to different areas. Here’s what they write in their abstract:
Electric shocks were identical to those that (sic) used in clinical practice. The second shock in succession to the same location of the body produced higher pain intensity ratings than the first shock and (sic) that the third shock in succession to the same location of the body produced higher pain intensity ratings than the second shock in succession.
For most people, that escalation would be a bad thing, this heightening intensity with repeated shocks to the same place. But the authors see it differently:
Our data suggest that repeated shock to the same location is likely to be more effective to establish suppression than repeated shock to different locations.
The “suppression” references suppressing the negative behaviors the shocks are intended to stop.

The literature on “contingent shock” is sparse, at best, mostly pertains to being effective in rodents, and seems to have come almost to a complete stop at the turn of the 21st century. One would like to think that perhaps with the dawning of a new millenium, we had entered a new age of evidence-based, nonbarbaric practices to help–not restrain, seclude, or shock–those with the most intense mental disturbances or developmental disabilities and that this new insight precluded even conducting clinical studies to evaluate these “therapeutic” approaches. However, since 2002, according to a PubMed search, there has been one article [PDF] evaluating contingent shock; more specifically, the investigators evaluated its side effects. Two of the four authors cite their affiliation as the JRC, and one is Matthew Israel, JRC’s founder. Perhaps not surprisingly, the authors conclude that there are no negative side effects with this therapy.
 
Matthew Israel, also possibly not surprisingly, seems to have studied under B.F. Skinner, inventor of the Skinner box, which can include an electrified floor to shock rodents and condition them. According to a 2007 interview Israel did with Mother Jones, early aversives Israel used in his work with people included spanking, pinching, spraying water in the face, and breaking a vial of ammonia under the nose. In the interview, he says these approaches have fallen out of favor because they are ‘politically incorrect’, and he describes how he turned to shock aversives:
You do find a lot of these in the literature of the ’60s and ’70s and ’80s—more so then, because it has become so politically incorrect. What you’ll also find is the skin shock. They would use a cattle prod. My consulting psychiatrist would say, “Why don’t you use the skin shock? It’s so much cleaner.”
He developed the higher-voltage GED, he tells the interviewer, because
… some students had adapted to the GED. You can adapt to aversive conditions and procedures. The body is made that way. Odors, for example, are aversive at first, but the body adapts. That happens, unfortunately, with many kinds of punishment as well.
“Unfortunately.”

Israel left the JRC in 2011 to avoid doing a prison sentence for allegedly destroying evidence in a criminal case in which the center was accused of wrongfully administering dozens of shocks to two disabled teens. In the Mother Jones interview, he is quoted as saying that the GED4 “leaves a mark.” He says,
…in some students it creates a mark that may last for days. I can’t think of a single one (negative side effect) except that it leaves a mark.
The mark that we can see and the hidden scars we can’t both represent what the U.N.’s special rapporteur on torture, Juan Mendez, calls … well, torture. To quote Mendez:
The rights of the students of the JRC subjected to … electric shock and physical means of restraints have been violated under the U.N. Convention against Torture and other international standards.
The U.S. government appears to agree that the practice is insupportable, having been cited in Mendez’s report (p. 83) as stating:
“The use of aversive therapy by JRC has been challenged through a variety of state and federal legislative and judicial actions,” including the Department of Justice’s (DOJ) investigation into possible violations of civil rights laws, which remains open and ongoing.
Yet the JRC remains open and ongoing … and shocking. Why is that?


Previously published at blogs.forbes.com/emilywillingham.

Monday, March 18, 2013

An Interview with IACC Member Dr. Matt Carey


As some folks in the autism communities seem to misunderstand the purpose and mission of the IACC -- the Interagency Autism Coordinating Committee, we asked recent IACC appointee Matt Carey to talk about why he joined the IACC, what the IACC does, and what he hopes to accomplish as a member. 

From the IACC member bios: Dr. Matt Carey joined the IACC as a public member in 2012. Dr. Carey is the father of a young child with multiple disabilities, including autism spectrum disorder, and is a frequent contributor to the Left Brain/Right Brain blog and other autism blogs. His writing focuses on reviewing current autism research in an understandable way for the public and he is deeply committed to communicating the importance of getting the science right for autism. 



TPGA: What is your elevator pitch, in terms of telling people what the IACC is and what it does?

Dr. Carey: First, I'd point out that while I am a member of the IACC, I don't represent them. So, even when discussing the IACC itself, my opinions are my own.

The IACC is a group with both government and community members whose job is to advise the government and private funding agencies on autism related issues.

What is the membership of the IACC, in general? Is everyone from the autism communities?

The IACC is 29 members, if I count correctly, about half government and half community members. There are autistic adults, parents, and representatives of autism organizations, with some overlap. For example Scott Robertson is both an autistic adult and a member of ASAN (The Autistic Self-Advocacy Network).

What made you want to join the IACC?

I've been following the IACC closely since the second generation of the committee formed in 2007.  After watching meetings and writing about them for years, I decided I had things I wanted to try to see done and the best way was to participate.

How does your membership experience compare to your expectations?

This has been a strange year for the IACC. The previous IACC's term ended in September 2011, and we started in July 2012 so there was a big gap. We had complete the requirements for 2012 in less than six months. And our big meeting was cancelled due to hurricane Sandy.

So, so far this has been very different from what I've seen before.

One big surprise is how little time there is to actually do business at the meetings. There are about 29 people on the committee, and a few hours for discussion and business at each meeting. That's not a lot of time for any one person to have an impact. There are votes by email and the drafts of documents are put together outside of meetings, so that saves a lot of time.

Also, I never realized how big the support team is for the IACC and all the good work they do. If you watch a meeting you will see Susan Daniels, the acting director of the Office of Autism Reseach Coordination, helping to keep the meeting moving and following the federal rules. She does a lot more than that. There is also a small team of people making sure everything happens, including science writers and support. It's a big effort and these are really good people. They make sure that the publications like the Strategic Plan get put together in a final form. A great example of their work is the Research Portfolio Analysis Tool (https://iacc.hhs.gov/apps/portfolio-analysis-web-tool/projects), that was put together by OARC to help everyone take a look at what projects are being funded and what are not.

What are some of the IACC's more challenging issues?

My opinion is that the IACC's biggest challenge is in getting its advice put into action. As I mentioned above, the IACC is an advisory committee. We don't write requests for researchers to submit grants or review grant proposals or things like that. So ensuring that much of the advice is implemented can be tough.

Another issue is that in putting together a long-term plan, when the law doesn't provide for long term funding for autism research. Public Law 109-416 created the second generation IACC and allowed the government to appropriate millions of dollars for autism research. But neither 109-416 it nor its follow-on, Public Law 112-32, created a long-term funding source. 112-32 ends next year (2014).

What aspects of the IACC give you hope for its effectiveness?

First, this is a good team of people, both from the government and community side. For example, I had lunch with Noah Britton and Dennis Choi at the last meeting. Noah is very good. He has some good work of his own and some excellent insights into areas outside his own specialty (psychology). Denis Choi is at SUNY Stonybrook and is with the Simons Foundation. He's not only a good researcher, but he's very good at describing complex issues in a way a non-specialist can understand.  And these are just two examples.

I think the fact that we have director-level NIH people on the IACC is good. This is a key target audience for the advice of the IACC and they are right there. The fact that Tom Insel (IACC chair and director of the NIMH) obviously stays on top of autism research is a good sign. I've also found that researchers take the IACC very seriously. When I've approached researchers for information, I've found them to be very willing to make time to share. When we were putting together the update for the Strategic Plan last year, the outside advisors brought in to work on it were some of the best out there.

Have you heard any misconceptions from the public about the IACC? If so, what were they?

Probably the biggest misconception is with what the IACC is charged to do. We don't control the autism research budget, we don't select which projects get funded, we don't even take an active role in what research project grants are solicited. The IACC is an advisory committee. We have influence, but not control in how the research agenda is implemented.

One way I look at it, since I'm a parent with a kid in special education, is where the IACC process is like and not like an IEP meeting. In an IEP meeting you get to help set goals for your child. In the IACC, we get to set goals for the research community. And that's where the parallel ends! In an IEP you then get to work on where and how those goals will be implemented. Not so in the IACC.  The government agencies and private funders take the goals and implement them without our further participation. In an IEP parents help set out how progress towards goals will be measured.  In the IACC, we can count how much money went to what goals, how many papers were published, but how do we measure the impact on improving the life of those in the autism communities? That is a big question which is just starting to be addressed by the IACC.

But the short version is that when people say, "The IACC has spent millions of dollars..." they are saying something that isn't true. We can influence how money is spent, but not control how it is spent.

How can members of the general public get heard by the IACC?

By submitting public comments. There are two ways:

One is to submit written comments by email: IACCPublicInquiries@mail.nih.gov. You can always send a public comment. OARC (the Office of Autism Research Coordination) saves them and gives them to us before the meetings.

Another is to present public comments in person. This is tough for people who live a long way away -- travel to Washington, DC to give a five minute statement is not something in the budget of most autistics or parents. But if one can, it is a way to get heard. You have to sign up and give the basic text of your statement in advance of a given meeting.

I read the comments as soon as I can after I get them, and again a few times before the meeting. It's clear to me that others on the committee read them as well. And there's time set aside in the meetings to discuss the comments.

And then there's participation. As I said before, this IACC ends in September 2014. There is nothing certain, but if they create a follow on bill, there will be a new IACC and new members. If so, there will be a call for nominations and a chance to get yourself considered to be a member. One misconception is that people have to be a member of an organization to get on the committee. That's not a requirement in the law.

Where does the IACC go from here?

The IACC has focused so far primarily on the deliverables spelled out by the law. The IACC creates a "Strategic Plan" for autism research. The IACC submits a summary of advances in autism research. But there are other broad mandates for the IACC. Such as making recommendations to the Secretary of HSS about any changes we might recommend for Federal activities in autism. Not just research, but any Federal activitities.

The IACC is working right now on a letter to inform the insurance changes that are ongoing with the Affordable Care Act (ACA), which is creating insurance exchanges in the states. The hope is to get autism treatments included in the care offered by the exchanges.

What effect would you like to have on the IACC?

Personally, I'd like to see if we can get the IACC to advise the Obama administration to fulfil its campaign promise to fully fund special education (IDEA).

There are many areas elsewhere I'd like to see focus applied. One is to focus attention on the needs of autistics with multiple disabilities, including intellectual disability. To come up with some goals which are specific to improving the lives of those in this subpopulation.

I'd like to see research into how there are disincentives for doctors in the current system to take on developmentally disabled patients. One doctor told me that about 80% of the information she uses to create a diagnosis is from direct report from the patient. What if the patient has difficulty communicating, on sensory issues that make it difficult to determine the condition? Developmentally disabled patients can take a lot more of a doctor's time, but doctors are not reimbursed for this.

I'd like to see study ongoing on autistic adults now, so we can see what helps and what hurts now, not wait. I'd like to see if there are medical conditions which are more common to adult autistics. There are a number of medical conditions known for people with Down syndrome, including early onset dementia. But because these have been identified and addressed, the lifespan and quality of life for adults with Down syndrom has been improved. Why are we waiting to focus attention on the adult autism population?

Friday, March 15, 2013

An Apology: Racism And Autism

Brenda Rothman
mamabegood.blogspot.com

It is not very long ago that I wrote a racist essay. 

While that statement settles in, let me quickly say: I am not a racist. I know racism still exists and must be fought against every day. I know black people still experience economic and social restraints that restrict their access and opportunity, compared to white people. I know people of color are marginalized by society in both trivial and critical ways through personal contact, society, and through the media.

I know all these things, and yet, I have also written unintentionally racist statements. One of those statements was in a public blog post, published on my own blog, on Thinking Person's Guide to Autism, on Denene Millner's My Brown Baby, and on Parenting.com. It doesn't get much more public than that.

In case you missed it, I'll summarize it. I wrote that my autistic child did not recognize race in people and that he identified people, instead, by foreheads and hair color. That inability to recognize skin color meant that he sometimes identified a black man as being or looking like his father, who is white. That wasn't the racist part. I surmised that my child didn't see race and concluded that I didn't need to teach him about race. There. That was it.

The only way a person could say that she doesn't need to teach her child about race is if that person is not a black person or person of color and does not experience racism. It's not that racism doesn't exist. It's not that we are all one skin color and are treated equally. It's that I was operating from a base of privilege, the privilege of being born white, and never having experienced racism on a daily basis since I was a toddler, simply because of my skin color. I could ignore the pain and trauma of racism only because I am white.

Black parents have no choice. They must talk to their children about race. They must tell them why they are treated differently and why racism is embedded systematically across society, not just the result of individual "bad" people. They must have that talk with them while they are still too young to fully grasp it.

Anyone can identify overt examples of racism and decry them. It is the commonplace, covert statements like mine that are harder to identify, yet leave the same injuries and reminders of difference. My ignorant (not innocent) statement was racist. And for that, I must apologize -- to Denene Millner, to her readers, to the Thinking Person's Guide to Autism readers, to Parenting's readers, and to black people everywhere. I am sorry for causing you pain.

For my readers, you might be wondering what an essay about covert racism has to do with a disability like autism. Everything. Everything. Disability is how I learned exactly how racist my statement was. Disability has taught me to recognize how difference is systematically identified, monitored, and isolated. Disability and the oppression that comes with it fall into the same category of Different, of "Not One of Us," that race does. As the parent of an autistic child, I cannot afford to ignore it, just as black parents cannot afford to ignore racism. And while there are commonalities between bias against disability and racism,  I do not want to take away from the prominence of racism or the importance of other oppressed differences.

There are seemingly benign statements and observations made every day about disability and autism.  There are covert, systemic ways that autistic and disabled people are marginalized and excluded. Here I am, a white person, admitting that, while well-intentioned and educated, I was ignorant and biased about race. Why bring it up?  Because that openness, that need to have that talk, is what leads me to explore biased statements, whether overt or covert, against autism and disability.

And to apologize to my brothers and sisters in difference.



A version of this essay was previously published at mamabegood.blogspot.com.

Wednesday, March 13, 2013

Vaccine Safety: A Conversation With Dr. Paul Offit

We occasionally feature posts about vaccines on this site and our Facebook page, to debunk declining but Internet-fanned beliefs about vaccines being linked to autism. Though our 2011 interview with vaccine and infectious disease expert Dr. Paul Offit addresses most questions people have about autism and vaccines, we sometimes get queries outside that interview's scope. So I was grateful for the opportunity to have another conversation with Dr. Offit when he spoke at the Children's Hospital and Research Center of Oakland earlier this month, and ask him some of your questions. Matt Carey from Left Brain/Right Brain joined the conversation as well. -SR

TPGA: Autism rates have not declined since 2001 event though thimerosal was eliminated from most vaccines in the US by then. In some cases, those who believe in an autism-vaccine link have just shifted the goalposts to injection of foreign substances into the body and other theories. What are your thoughts?

Dr. Offit: When the hypothesis was raised about whether or not the MMR vaccine caused autism, that was a pretty easy series of studies to do. You could look at children who did or did not receive that vaccine in retrospect, and do a pretty good job of controlling for medical background, socioeconomic background, health care-seeking behavior.

Same thing is true for thimerosal, because there were Canadian provinces that used thimerosal-containing vaccines, others used the same vaccines without thimerosal, Western Europe had taken thimerosal out of vaccines by 1991, we used the full complement of thimerosal-containing vaccines until 2000, so those were easy studies.

Then you get to the harder studies, the questions about aluminum, or fetal bovine serum. You're not going to be able to have a study where you look at vaccines that contain aluminum and vaccines that don't, because those studies don't exist.

The best you can do is look at the studies by Charles Woods and Michael Smith, where you look retrospectively at large numbers of children who either got vaccinated in accordance with the AAP (American Academy of Pediatrics) / CDC (Centers for Disease Control) schedule, or got very few vaccines -- 1 or 2 or 3 in those first couple years of life. You can do that study. This handles many of the things you said, because it handles the aluminum as adjuvants idea, it handles the issue of other excipient materials: things like fetal bovine serum, or porcine gelatin, etc. That obviously shows no difference because it wouldn't make any sense that you would see a difference.

We're exposed to small quantities of heavy metals all the time, living on the planet earth. We're all exposed all the time: Mercury and thallium and beryllium and cadmium. If you really want to scare yourself, there's a guy at UCSF, Eric Delwart, who has a kind of high throughput, deep sequencing technology where he can detect very few copy numbers by the polymerase chain reaction of the genes, from very few fragments of genes. I think if he took that technology to the grocery store, and just surveyed the surfaces of the fruits that we buy, I think you would find genetic fragments of DNA from all sorts of things, and I'm including humans -- I mean, we die, we get absorbed into the planet earth, we get into the aquifer.

Understood. We sometimes hear from people complaining about things like formaldehyde in vaccines, when our bodies make formaldehyde naturally.

That's true, formaldehyde is part of single carbon metabolism, and your body makes it al the time. And you make more when you drink! So if you really want to avoid formaldehyde, no beer, no wine, no alcohol. While you might not give your baby wine, your baby does have single-carbon metabolism.

We hear a lot from people complaining about "too many vaccines, too soon" even thought the actual antigen load is less than it used to be. How would you address this issue?

The way the smallpox vaccine was made 100 years ago is the way that it would be made today -- we still have stocks of so-called dry vaccine in the freezers at Wyeth -- and if we were to need it again, here is how it's made:

You take a calf, you shave it. Then you take a rake, this excoriating device, and you scrape it along the sides of the calf, causing these four lines of blood to form. Then take this virus, vaccinia virus  which is not quite cowpox virus -- it's actually a combination of cowpox and swinepox and horsepox, and you put it dropwise on these bloody streaks. You wait a week for the pustules to form, then you harvest the pus, you spin out the white cells and the hair, you dry it -- and that's your smallpox vaccine.

I was at the Wistar Institute as their chief medical officer a number of years ago, and they were doing a study of the Vaccinia virus vaccine recombinant -- it's the smallpox vaccine, except they inserted into it a gene that coded for one protein, a sort of a rabies protein. So they were going to take this vaccine, and distribute it; they were going to soak the heads of chickens with this Vaccinia virus recombinant, and distribute them out on Parramore Island off the coast of Virginia to try to decrease rabies in raccoons.

I had to vaccinate about 30 veterinarians -- big, lumbering guys with plaid shirts and beards -- with the smallpox vaccine before they could to go to Parramore Island to distribute these chicken heads. One guy came to me a few days later, and he had fever and a tremendous swelling of the lymph gland under his arm which I thought was infected with the bacteria. So I took him to my boss, Stanley Plotkin (the developer and inventor of the rubella vaccine, and the rotavirus vaccine) and thought he was going to say that this guy had an infection of the lymph node under his arm, for which he would need to be admitted to the hospital and receive intravenous antibiotics. But Stanley looked at it and said, "Good take" meaning that's what you'd expect to see when you have a "good take" from the smallpox vaccine.

That smallpox vaccine is from 100 years ago, and it contained more immunological components than all the vaccines we use today. So when people say things like, "As we give children more and more vaccines and challenge their immune systems more and more, and worrisomely perturb or overwhelm or weaken their immune system," that is nothing. We live in an era where we have advances in protein purification, chemistry, and recombinant DNA technology where we can make very pure, very safe vaccines -- much safer than the smallpox vaccine we gave 100 years ago. We encounter far fewer immunological components in today's fourteen vaccines that we give to young children than we gave in one smallpox vaccine. And we make them a lot better. We don't take calves and shave them anymore.

Matt Carey: But what we do do is throw in adjuvants, so we are doing something to amplify the immune response. So is the math actually solid to say, "Take just that one comparison -- number of antigens then and now -- for what our immune response is going to be"?

Fair enough. We do things to allow us to give fewer doses of a vaccine and lesser quantities of antigens. For example, if you were infected with diphtheria, that bacteria produces a toxin in large quantities which gets distributed throughout your body and induces a vigorous immune response to the bacteria as well as to its toxin. When you give a diphtheria vaccine, you take that toxin, you kill it so that it can't cause harm. That makes it much less immunogenic, much less capable of inducing an immune response. So you have to find a way to get your immune response without causing the harm from the diphtheria toxin -- and that's where the adjuvant comes in.

The adjuvant does increase the immune response, it's true, but it certainly doesn't do it at a level that would be greater than natural infection -- it's less, and that's why you have to give many doses. If you're infected with diphtheria once, you're probably protected against diphtheria for the rest of your life. But you have to give many doses of diphtheria vaccine, even with an adjuvant, because you've so significantly weakened that diphtheria protein by inactivating it.

So when you see fever with vaccines, frankly, mostly it's because of the adjuvant. And fever is a good thing! I know most parents don't feel this way, but the question is, "Why do we have fever?" And it's clearly an adaptive response. All mammals on the face of this earth that are endotherms, meaning having the capacity to make their own fever, have it for a reason, and the reason is that it makes your immune system work better.

Your immune system works better at a higher temperature. And there are many proofs of that -- one is that if you take people who have chickenpox, for example, and you give them antipyretics (fever reducing agents) like Tylenol, and compare them to people who don't get Tylenol -- those who don't get the fever reducing agent and are allowed to have a fever, their blisters will "crust" much more quickly. Therefore, having a fever benefited them, in terms of getting better.

If you take adult volunteers and infect them with rhinovirus, the common cold viruses, and give only some fever reducing agents, those you give the fever reducing agent to shed the virus longer.

A fever is a good thing. A fever is a sign of a health immune response -- it just feels bad, it's uncomfortable to have a fever. You pay a metabolic price for fever. But the degree to which we go crazy trying to lower our children's body temperatures is unnecessary.

Matt: But there's obviously a point at which the fever becomes problematic.

Sure, but that's not usually the story with vaccines. Vaccines are usually associated with low-grade fevers, not high spiking fevers.

TPGA: We also get questions about virus shedding, specifically with regards to the flu vaccine and whether or not vaccinated people can infect others with the flu virus.

Well the flu shot is not a live virus. So you can't possibly infect other people.

With the nasal spray flu vaccine, the early transmission studies show that the virus is not transmitted from once person to the next. I mean, there's only one vaccine that is not recommended to be given inside the household of someone who is immunocompromised, say, a child living with someone who is undergoing chemotherapy as a cancer treatment -- and that's the oral polio vaccine, which we don't give in the United States. All the others are so weakened that they don't cause a problem.

Can you talk a little bit about the nature of the FluMist vaccine? What does it mean that it is "cold-adapted?"

There are a lot of ways to weaken a virus: You can weaken it by growing it in non-human cells, which makes it less capable of growing in human cells. You can weaken it by growing it at a temperature lower than body temperature, which makes it less capable of growing in cells at body temperature. And that's what the FluMist vaccine is: a live attenuated influenza vaccine that can reproduce itself in the nose, which is a degree or two lower in temperature than the rest of the body -- and so, assuming someone has a normal body temperature, it cannot cause influenza in them. So even people who have a lesser capacity to fight infection, i.e., people who are immunocompromised -- those people aren't *colder* than other people, so it's not a problem.

This question is from Twitter: How do we know that vaccines are truly safe in combination?

Whenever a new vaccine comes onto the market, the FDA will not license it unless it is clearly shown to be safe when it is given concomitantly with all the other vaccines on the schedule -- for example, the rotavirus vaccine came onto the market, it was to be given by mouth at 2, 4, and 6 months of age. Even though that vaccine was given by mouth and all the other vaccines were given as shots, you had to prove that when you gave the rotavirus vaccine, you did not decrease the immune response or change the safety profile of the other vaccines -- and vice versa. Those are so-called concomitant use studies, of which there are hundreds, and you have to prove that.

We also get a lot of people saying that the pertussis [whooping cough] vaccine doesn't work, and so people shouldn't take it -- that the people who are coming down with pertussis were actually immunized. How would you respond?

The newer whooping cough vaccine is not as effective as the older whooping cough vaccine -- but it's still more effective than not getting a vaccine. That's been shown over and over again. During the 2010 pertussis outbreak in California, you were eightfold less likely to get whooping cough if you got the vaccine than if you didn't get the vaccine.

So is vaccine-induced immunity to pertussis less effective than that of other vaccines?

With diphtheria and tetanus vaccines, if you look at that data, the antibodies from those vaccines are pretty robust from the time you get the vaccine until five, seven, eight years. It starts to come down a little bit at ten years. With the whooping cough vaccine, on the other hand, immunity starts to fade at around three years -- it's less effective than the tetanus or diphtheria components of that combined vaccine [Tdap, etc.]. But again in all cases it's better to get a vaccine than not to get one.

Can you talk about your own experience in managing vaccine skepticism in medical support staff?

Children's Hospital of Philadelphia is a big hospital, we're a 650 bed hospital. There are a lot of patients who are severely immune-compromised, and others who are too young to get a vaccine -- with the flu, you're not recommended to get the vaccine before six months of age. And there are a lot of kids in our hospital who are vulnerable to influenza.

Yet people come into our hospital with influenza every year, and every year there are a number of children who get influenza in the hospital even though they didn't come in with it -- when they get it, they generally get it from us, when a caretaker transmits it from one patient to the next no matter how careful we are. You can decrease -- not eliminate -- the chance of that happening by getting an influenza vaccine.

Starting around 2002, we really tried to get people working in our hospital to get vaccinated -- we had educational programs, we had town hall meetings, we had raffles and games, we gave away Eagles tickets -- and we got immunization rates up to 60 - 70% percent. Then we had a declination form, which read like it should have a skull and crossbones on it -- it basically said, "I know influenza comes into our hospital. I know that I can catch influenza, I know that as a health care worker, I can transmit it to someone in the hospital, I know my patient can suffer and die from influenza, and I'm still choosing not to get a vaccine." And a solid fifteen to twenty percent of people signed that form, sadly.

And so, we took the next step -- we figured that if you were choosing to work among a vulnerable population of hospitalized children, that there was a responsibility that came along with that. There were 10,000 people who we defined as health care workers -- not just doctors, nurses, and nurse practitioners, but anyone who could walk on the floor -- environmental services, dietary services, etc. And we insisted they be vaccinated for influenza. And virtually everyone bought into the program, but there were nine who didn't, and we asked them not to work in the hospital anymore, not to work around those children. And since then we really haven't had a problem.

You mentioned during your talk that not all doctors understand the biology of vaccines, and that there is vaccine misinformation in the medical community. How do you think it takes root and spreads?

So on the planet you're talking about, people go to college and then go to medical school and learn about the biology and physiology and microbiology of vaccines, and then are influenced by those data, and then make the right choices.

That's not our planet. On our planet, there are still a lot of myths and misinformation at all levels. There are doctors in our hospital who don't understand vaccines very well. Maybe it's a failure on our part to adequately educate at the medical school and during the residency.

Understood. Last year, after the CDC's 1 in 88 autism prevalence numbers came out, I was asked to be on a local radio show with a doctor whose approach to autism was rooted in pseudoscience. But he was their "autism expert," because they didn't know any better. And it was extremely frustrating, because he was the medical doctor, and I'm just a parent -- yet I was the one defending evidence-based information about autism.

Anyhow. How do you recommend doctors and people in general reach those who are skeptical about vaccines?

I think it's OK to be skeptical about anything you put in your body -- you should ask questions about it. But it's not OK to be cynical, to believe that vaccines are all a conspiracy to sell product. That's when you cross the line into being much less able to be convinced by evidence.

And the evidence is clear: vaccines work and they're safe. A choice not to get one is a choice not to take an unnecessary risk that can cause permanent harm. In this country, the odds are that if you choose not to get a vaccine, you're going to be fine. But you're still playing a game of Russian Roulette, and it's a dangerous and unnecessary game to play.

If you want to be convinced, spend some time with the advocates from organizations like Families Fighting Flu or the National Meningitis Association, because they all tell the same story: "I can't believe this happened to me." And then they become vigorous activists, and try to educate others that this could happen to them too.

We have town hall meetings at the hospital, with groups of 50 to 100 parents who come in to talk about vaccines, who are hesitant about vaccines. The first meeting we had was in a Jesuit church, you know, with a big cross behind me. And it was a tense meeting. I was on the ACIP (CDC Advisory Committee on Immunization Practices) at the time, and people were asking questions, and there was a sort of "me versus you" feeling going on -- I felt like I was on stage, even though I was at the same level as everyone else. And then a toddler sort of toddled up to me, maybe a 3 or four year old, and absently I just sort of took him and put him on my lap because I had young children at home and it was an easy thing to do and I love children. And the whole tone of the room changed -- suddenly I was one of them, because I was seen as a human, seen as a father -- which is what I am.

The whole dichotomy that we have, of parent versus doctor -- we give these vaccines to our own children. I don't distinguish the two. It's not a matter of training or expertise. I put that child on my lap and suddenly I was them. That stuck with me.

Matt: Why are you still in academia? You could do anything you want right now.

I'm doing exactly what I want. I love the academic freedom. Were I to go into industry, I'd lose that freedom. I love that I can write what I want and say what I want.

When I was in research, my task was always to write things that are new, to advance the field. That's sort of true now too, in a sense -- in the books that I write, the educational materials that we do, to try to think of a way of saying things that's compelling -- it's really fun. I love the freedom of academia. It's the world's best job. You get paid to do what you love. I could never imagine going into any job in which your voice was restricted.

Monday, March 11, 2013

Gym Hell

Katharine Kroeber Wiley
www.meowspawprints.co

Imagine a girl sitting in the corner of the gym during PE, her hands over her ears, maybe rocking or making a keening noise: she’s trying to tune out the intolerable chaos of running bodies, echoing noises, glaring lights. She gets blamed for disturbing the other children, and her parents get an angry phone call.

Physical exercise is a great thing. It can help autistic kids organize their thoughts, attend to their work, reduce stress. Particularly for autistic kids who are good athletes, these activities can boost confidence and serve as a social ice-breakers. Some manage gym classes without any accommodations, some need a few adaptations, some thrive with specific Adaptive Sports Programs. But many parents, or budding autistic self-advocates, are unaware of the wide range of options they can request, get turned down flat, and don't know how to fight back. So far too many autistic kids are simply thrown into regular gym class and expected to fit in. No matter how much families, or kids themselves, protest that given difficulty processing social cues, team sports only set some autistic children up for failure (and for the condemnation of their peers and far too often their teachers), we are told that gym class is good, not just for the exercise but because it teaches good sportsmanship and (ahem!) socialization.

Schools present gym as Emily Post in shorts and sneakers, but for many autistic kids it isn’t; it’s an exercise in misery. For some autistic kids, everything in an ordinary gym class -- the numbers, noise, confusion, competition, teamwork -- works against them.

And sometimes gym is used as a cover for worse things. I’ve heard so many stories from parents of this kind of abuse via gym class, that they play in a loop in the back of my mind.
  • “Hi, this is the school nurse. You should come pick up your son. He has a bloody nose, and he hit another child. You really need to teach him not to attack other children.”
  • “How did he get the bloody nose?”
  • “Well ... all the kids were throwing the balls at him in dodge ball in gym class, and he got hit in the face.”
  • “Do you think maybe that’s why he hit the other child? Maybe my son felt attacked.”
  • “It’s just a game!”
     
  • “Hi, this is the gym teacher. You need to discipline your son. The other kids were playing a game and he started to attack them.”
  • “Would this be the ‘game’ where they all chase him calling him rude names and yelling ‘we’re gonna GET you!’ and pin him to the floor?”
  • “Ummm ... it’s just a game.” 
It’s difficult to convey to teachers and administrators just how confusing and overwhelming even a regular gym class can be, that even games with better rules than dodge ball can be baffling -- why does who is on ‘your’ team change every day? Why is it always a different goal? Where are the boundaries, and why are they different this game from yesterday’s game?...

I’ve often wanted to throw school personnel into a situation of total chaos, with people yelling at them in a foreign language, with gongs and drums banging and strobe lights flashing, and people hurling large objects at them and shoving them, and see how they react. Every time they get hit or shoved others would applaud and cheer, and the people in charge would blame them, not the attackers. Then do it a second day, with different people as the ‘good’ and ‘bad’ ones.

And then demand to know why they failed to understand the game or to get properly ‘socialized’.

Maybe if they had to live in hell a little bit themselves, teachers and administrators would be less eager to force our kids to live through gym hell, and more willing to look at options.

Wednesday, March 6, 2013

The Yin and Yang of Privilege and Empowerment

Leah Kelley
30daysofautism.wordpress.com

I have been reflecting on privilege ... and perhaps entertaining the loss of it as we work to find our place and way to support others in the autism community.

I have been raised with privilege (not riches and extravagance -- see the link at the end of this post to learn more about this). Although I am in my late forties and have occasionally felt the sting and squeeze of sexism, or the judgment of others in dealing with low mood and depression, I have not suffered abuse, nor have I been silenced because of my neurology, or my ethnic background, or...

That sense of privilege has a shadow, and the shadow is the assumption that I have the right to speak up -- to say my piece -- to be heard. And I am coming to realize that this attitude may actually silence or dilute or diminish the message of others.

I am trying to be aware of this so that I do not assume the same privilege when I am interacting with Autistic adults. If I am working to empower the voices of others, I may need to be willing to make my own subordinate. If I am sensitive to this, I may feel silenced ... I may need to silence myself.

This feels uncomfortable at times. I am learning to make peace with this discomfort. It may feel like I am being silenced by those I am trying to support... and it may even feel like there is an irony to this.

But this is not about me.

I may feel misunderstood at times. I need to carry on regardless.

Sometimes I may want to jump in to try to repair a misunderstanding -- or to explain. But the difficulty is that doing so can seem dishonouring to others.

So I am learning about my own silence.

I am learning to embrace it, and to understand that my discomfort is deepening my understanding of the experience of others -- and I also acknowledge that this is merely a glimpse of their experience, and that I cannot fully understand.

And within all of this I know that this is still not about me.

There is a deep questioning about my assumptions, and in my quiet I see there also exists an opportunity to reframe my experiences and question what I have held to be truth as a subjective reality. I am open to examining this.

I am shifting and changing, and my response to being misunderstood is now sometimes a quiet one. To rail against the perception of others can seem like silencing their perspective -- the very perspectives that I want to honour.

If I want to make things different, I need to be willing to take the blast. Sometimes it may be because of something I did or said, and inversely, sometimes it might be because of something I didn't say, and my silence was interpreted as complicit. Sometimes it has been because I wanted to support others and extended support in two opposing directions. There is no easy path that I can see, there is no way to get it all right, every time.

I am coming to accept that I will not get it all right. I am learning that as passionate as I may be about supporting others and working to create a world that is more supportive of diversity, there will certainly be mis-steps and some of those will most certainly be mine.

And I am learning that there is a yin and yang to voice and privilege. I may experience less power to my voice, I may perceive less privilege in an interaction, fewer rights to have my perspective understood -- but the space left with my silence may be the space needed to allow for the action and empowerment of others.

And I am working to be open to that.



Previously published at 30daysofautism.wordpress.com as Easy Silence Part 2: The Yin and Yang of Privilege and Empowerment.

Monday, March 4, 2013

My Anxiety Is Not Disordered

Cynthia Kim
musingsofanaspie.com

I’ve been thinking and reading a lot about anxiety recently. When I was diagnosed with Asperger’s, I was also diagnosed with Social Anxiety Disorder.

Here’s how I feel about that: Social Anxiety? Yes. Disorder? Not so much.
Disorder implies that my social anxiety is irrational. Is it? Consider this:
“Anxiety at appropriate levels is important for adaptive functioning. There are many environmental hazards that must be avoided and these are often learned through the process of anxiety induction. The resultant anxiety response is learned through the association of certain stimuli with unpleasant consequences.” (from “Autism and the Physiology of Stress and Anxiety,” Romanczyk and Gillis)
Anxiety, like fear, protects us from danger. It raises our guard and makes us wary. In this way, it’s healthy. Without it, we might be less motivated to get an education, to work, to care for our loved ones and ourselves.

blueanxiety

What is Anxiety?

Anxiety is a state of worry, concern or dread related to something that hasn’t yet happened and may, in fact, never happen. Think about some things that we typically feel anxious about:
  • Committing to a relationship
  • Civing a major presentation for school or work
  • Becoming a parent
  • Meeting a partner’s family
  • Starting a new job
  • Learning to drive
  • Flying on an airplane for the first time
  • Traveling in a high crime area
When you feel anxious about an upcoming event, you spend more time thinking about it and preparing for it than you would for a more mundane activity. You examine the possible consequences and give extra attention to your actions to ensure the best possible outcome. Anxiety heightens your awareness; heightened awareness sharpens your focus, increasing your safety.

It’s important to note that here and throughout this piece, when I talk about anxiety, I’m referring to appropriate levels of anxiety, not paralyzing anxiety. An appropriate level of anxiety is one that is manageable. I feel nervous in the days before giving an important PowerPoint presentation, but I manage my anxiety and complete the presentation to the best of my ability. An inappropriate level of anxiety is one that prevents a person from completing a necessary or desired activity, for example, if I got so anxious about the presentation that I ended up sick in bed, fainted in the conference room, or lied to avoid presenting.

Not all anxiety is healthy and it’s important to recognize where your anxiety falls on the healthy/unhealthy continuum.

The Function of Social Anxiety in ASD
 
So that’s how anxiety works in the typical brain. But what about in the autistic brain?

From childhood, autistic people know that we’re missing key information in social situations. We often have difficulty interpreting facial expressions, tone of voice, body language, and non-concrete speech. Some people also struggle with auditory processing and sensory overload in public or group settings.

The results of our social communication challenges can range from inconvenient (missing a joke or not following a conversation) to dangerous (being bullied, taken advantage of or assaulted). There are also negative health consequences -- many autistic people need hours or days to physically recover from prolonged or intense social interaction.

Over time, “through the process of anxiety induction,” we realize that certain social situations are “environmental hazards that must be avoided” (as Romanczyk and Gillis described). In other words, because of a very real hazard, we develop anxiety that for us has a very real cause. It isn’t disordered. It’s a defense mechanism, developed through “the association of certain stimuli with unpleasant consequences.”

Social anxiety is, therefore, not only “important for adaptive functioning” in autistic people, it’s essential.

traffic light
Red Light, Green Light

Autistic social anxiety is not the same as neurotypical social anxiety. If a person with intact social communication abilities has severe anxiety about social situations, then they have a disorder because their fear is irrational. When a person with impaired social communication abilities has anxiety about social situations, they are like a poor swimmer who is anxious about boarding a boat. The perceived risk is real and rational.

If fear is a red light–a glowing “stop” signal in our brain, then anxiety is a yellow light. It’s the feeling that says, “slow down, caution, stop and pause a moment before continuing down this road.”

We should heed this feeling, not cure ourselves of it.

Appropriate vs. Inappropriate

But, some will say, too much social anxiety and you’ll become a recluse! A hermit! The little old lady shouting at those darn kids to get off her lawn!

Well, yes and no. First of all, allow me to horrify the more socially oriented among you by saying this: people aren’t all that interesting and the rewards of socializing are sometimes overrated.

Consider the possibility that all of the following (fictional) people are meeting their needs for social interaction:
  • The person who lives alone, works at home and in the evening participates in role-playing games, an acting workshop and a drumming circle
  • The person who lives with a partner and has lunch once a week with a close friend
  • The person who attends classes full-time and prefers to socialize online in text-based formats outside of class hours
  • The person who chooses to spend time at home with family and only goes out for necessary errands or events
  • The person who works around people all day and likes to spend their evenings alone
The social preferences of these people may differ from the majority of their peers, but they aren’t exactly in Grey Gardens territory.

Being anxious about socializing is not the same as completely avoiding social situations. It’s possible to manage social anxiety in the same way we manage anxiety about other things. Someone -- NT or autistic -- might feel anxious about starting a new job, but that doesn’t mean they won’t do it. Most people have strategies for managing anxiety and autistic people are no different.

What is different is that our social anxiety is automatically pathologized and then “treated” with therapy or medication. We’re told that our fear is irrational and we need to change the way we “think about” social interaction. We’re told that if we just “relax a little” we’ll find social interaction much more enjoyable.

What would be far more helpful is to acknowledge our anxiety as valid and support our right to socialize at our preferred level, in our preferred ways, without being stigmatized for it.

What Anxiety Tells Us

So how does social anxiety keep us safe?

First there is the obvious example: when you have difficulty interpreting nonverbal cues, it can be hard to know when another person is a threat. This can be especially true for autistic women and girls, increasing our chances of becoming the target of sexual assault, sexual abuse or domestic violence. The autistic woman who feels anxious about dating, intimate relationships or venturing into unfamiliar situations has good reason to -- the statistics for violence against autistic women are alarming.

Autistic people are also often victims of bullying. The autistic boy or girl who is anxious about recess or the school bus has a large databank of negative interactions feeding that anxiety. Their anxiety tells them that unstructured activities with limited adult supervision are a potential danger zone.

Those are both reasonable examples, right? But what about the anxiety-inducing holiday party, trip to the mall, or vacation? Surely that’s irrational?

Not if you’re forced to think about every social activity in terms of cost. There are many analogies for this concept: spoon theory and the social cup vs. bucket analogy are the most popular. I’ll spare you a new analogy and give you an example instead.

Last spring my nephew and his wife came to visit for a long weekend. He’s one of my favorite nephews and I was looking forward to meeting his new wife. Still, I was anxious. Having two additional people in the house for three days would mean a disrupted schedule, unfamiliar noises and smells, a loss of my precious alone time and lots and lots of talking.

The Scientist and I came up with a schedule -- scheduling is essential for me to get through three days of company -- and then I set about thinking of ways to conserve my resources. I volunteered to drive because I find it relaxing. We scheduled downtime for me on Saturday afternoon while everyone else went out. I suggested we visit a historical site that I knew well, because it would mean a familiar environment plus the chance to infodump in a socially acceptable way.

We had a great time. They enjoyed the places we visited and the meals I cooked. We laughed a lot and had meaningful conversations. Things couldn’t have gone better. And still, Saturday night as everyone sat around the dinner table talking for hours after the meal was finished, I found myself shaking uncontrollably.

Even with all of my planning, even though I was enjoying myself, the day’s socializing had overwhelmed me. I knew it was coming, had felt myself shutting down as the evening wore on, but I ignored the warning signs. I didn’t want to end a great day on a bad note.

Unfortunately, it’s not about what I want. Social interaction has a real physical cost for autistic people. If I don’t listen to the voice of caution in my head and limit my interactions, my body will eventually take over and limit them for me.

When I’m in a situation where I feel comfortable, I can handle longer interactions. If I have to deal with unstructured activities, unfamiliar places, new people, rapid shifts in conversation partners or topics, or any of a long list of other things I find challenging, I’ll hit my limit sooner. An hour might be all I can deal with before I start feeling a strong need to escape.

Since being diagnosed with Asperger’s, I’m getting better at “reading” myself. The anxiety, the need to escape, the withdrawal that precedes the uncontrollable shaking -- these are not things I need to be cured of. They are signs that I need to take care -- yellow lights to be heeded -- and I’m learning to listen to them.



Previously published at musingsofanaspie.com.

Friday, March 1, 2013

Privilege Is Not A Game, But We Can Win

Elizabeth J. Grace
www.tinygracenotes.com

There are zero-sum games in which there’s a winner and a loser because basically there’s only so much to go around, and there are non-zero-sum games which are not like that. In non-zero-sum games there are other outcomes, like everyone winning, because various real-life things can happen, like solidarity producing more goods to go around. A large-scale change in understanding of these things would have an immediate impact and far-reaching implications, especially concerning Autistics and parents of kids who are Autistic or have autism, whether the parents are on the spectrum or Autistic or not.

In game theory studies such as the famous Prisoner's Dilemma (which has actually gone through a lot of empirical runs with live participants) it has been shown that people are willing to act against their best interest in the whole story in order to make sure their “opponent” cannot possibly “do better” than them. In essence, they fail to see the bigger picture, and therefore lose out bigger than they would have done, had they risked less by trusting more and playing smarter.

Privilege is not a game, but thinking about game theory might help, in case we are worried about winning and losing, because we have a lot to lose, and also, we can win.

Here is how to win.

First of all, one of the issues with the concept of privilege is that it is very difficult to maneuver, being that there are so many dimensions, that it is such a fluid thing, so contextual. I have heard it being compared to math. That is a valid comparison in many ways.

If privilege were a besting, one-upsmanship game, in which the rules were You Are More Privileged Than Me So Shut Up I Win, No You Are So You Shut Up, as I have heard it characterized, it would indeed be a terrible sort of math problem, and moreover, you’d need people’s FBI files or something.

Fortunately, this is not the case at all. To know this is to begin to win.

Privilege is a frame for a person oneself -- let’s say that person is me -- to look through, whereby I gain more compassion and understanding. It is an elusive, magic frame, and I cannot even find it unless someone else, someone with less privilege than I have on any given axis, invokes it for me. Once they have done so, I can see and hear new things, become a better person, a better ally, and a stronger citizen of the world. Someone says: Privilege! You are Racist! You are Cis! Do I say, “ACK no I am Disabled! I am Gay!” or do I think to myself, “well being Autistic and Gay I at least know what it is to be the underdog, so let’s hear what’s going on, let’s learn why this is coming up now even though I thought I was doing OK, because the speakers are neither white nor Cis so really who should know more about that then them”? Logically, and this is actually in the best interest of myself, I will do the second, and use my own other-context lack of privilege as a means for understanding...

What do I win?

I win more humanity for myself, and maybe I win some trust from the person who invoked the invisible lens.

How do I know when to do this? Generally, I should always do it, by default, because if there is an invisible thing that other people who are not me are more aware of, it seems to me I need their help finding it. But I know for sure I should do it double-time STAT if I feel a resistance, if my need to not listen to the call is embedded and furious. Because under what circumstances really do I not want to learn? Suspect circumstances, times when I feel threatened, but why? New knowledge is not, has never been, will never be, my enemy. I have to remind myself of this, because at times, it is not obvious. At times, I feel beleaguered, and scared. I feel that way this exact moment, which is why I am writing this thing real quick.

What does my corner of the world, the Autism/ASD/Autistic Communities (Potentially Consolidated) win? Together, we win a chance at more understanding, kindness, trust, and solidarity.

Why does this matter?

Because there’s a reason people call it “in-fighting.” The rest of the world sees us as though we should be working together. Historically, groups of people in our respective positions have worked together and only thus been successful. (For examples, see the histories of other civil rights movements, and how multitudes of caring, ethical people who both were and were not in the targeted group respected each other and worked together to achieve new heights of social justice.)

We are the ones who care about the things we care about and other people don’t have as much of a reason to care. This has been true in all of the civil rights movements and it was greatly helped by the joint concerted efforts of [people with more privilege in the particular axis] (such as whites, or PFLAG members) that other people who had no dog in the fight started to pay more attention, because of the signal boost of people they could relate to better, as well as the simple fact of there being strength in numbers. But again: other people do not have the relevant information or motivation to care about what we know to care about, and we do, all of us. Back to our situations related to autism spectrum life ways.

Quick example: A lot of people walking around think respite is the exact same thing as “glorified baby-sitting” and why should their hard earned taxes pay for “expensive welfare queen stuff” like that? (People said this right in front of me before I explained it to ‘em.) I don’t think any of that, because I know better (Yes I did explain in Graphic Detail). A lot of people walking around think it is no big deal that Autistic adults are statistically shown to be way less employed than even people with other disabilities. If most parents of Autistic kids agree with that tidbit being fair, you can knock me over with a feather.

We win by winning together. We increase the sum by working together. If “piece of the pie” were a real pie, we would literally be able to make the pie bigger this way.

Privilege: it is not a game, but we can all win by checking our own and not trying to do illogical ignorant math about it in respect (or disrespect) to others.

Remember: we care about things other people do not give two whatevers about. We care about our real lives. I think we care about each other’s real lives. We are not natural enemies so for the love of love, let’s make a note of that. And, having made that note, we can take it into action.