Monday, January 30, 2012

Pseudoscience Alert: Lyme-Induced Autism

Emily Willingham
biologyfiles.fieldofscience.com

This post was originally written in September, however questions and assertions about "Lyme-Induced Autism" still occasionally percolate online. Please do feel free to counter such concerns with a link to this analysis by our TPGA Science Editor. -The Editors

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In the "this isn't science or news" category, a local Fox station story out of Sacramento. Let's take this bit by bit, shall we?

Headline: "Doctors find link between Lyme disease, autism"

Problem 1: The story isn't about "doctors" finding "links." It's about one doctor claiming to have seen children in her practice (more on that later) who are "cured" of their autism after treatment for Lyme disease after testing positive for it. In reality, the story presents only one example to support the claim.

Problem 2: The story doesn't show any "link" in the scientific sense of the word, at all. In fact, it produces no science whatsoever. Yet, the headline sounds so very, very sciencey, does it not?

Lede:
Although the mystery of autism continues to puzzle the medical community, some doctors are finding a link between autism and Lyme disease, which is called "Lyme-Induced Autism," FOX40 Sacramento reported.
See above. "Some doctors" appears to be "one doctor." And yet, they've named it "Lyme-induced autism." A search of PubMed for this new disease turned up exactly no hits.

Exposition:
Mary Hendricks, 19, was diagnosed with a severe case of autism at the age of 2, but also showed symptoms of digestive problems, skin infections and pain.

After 17 years of constant doctors' visits to diagnose the problem, a specialist told Mary's mother, Tina, that the key to diagnosing her daughter would be to diagnose her first.

In the past, Tina had suffered from colitis, fibromyalgia and flu-like symptoms.
The mother has a history of vague, non-specific symptoms. The child was diagnosed with autism at age 2.

Bring in the specialist:
Doctors ordered a Lyme disease test, which came back positive. Then, the same test showed that Mary also suffered from Lyme disease. After receiving the results, Tina recalled that before getting pregnant with Mary, she had two ticks removed from her skin and hadn't thought about it since.

If a child has autism from birth, many times it's because the child inherited an infection from the mother. I do think that Lyme disease, especially congenital Lyme is a cause of autism," autism specialist Dr. Lynn Mielke told FOX40.
What? Where are the data showing that "if a child has autism from birth, many times [italics mine] it's because the child inherited an infection from the mother"? This is an etiology that is absent from most scientific discussions of autism I've seen. It's not that people haven't looked into it. They have. And they found no link between maternal infections throughout pregnancy and autism diagnosis. "No association was found between any maternal infection and diagnosis of ASDs in the child when looking at the total period of pregnancy: adjusted hazard ratio = 1.14 (CI: 0.96-1.34)."

That study did find that hospital admissions specifically for viral infections in the first trimester or bacterial infection in the second trimester were associated with an increased risk for an autism diagnosis. But nothing that fits the alleged pattern of a pre-pregnancy Lyme infection and autism.

In fact, as noted, there are no hits combining Lyme infection and autism as an entity in the literature, and there are only four hits on the two terms combined at all. Only one of these directly addresses it. This paper is from the journal of questionable questionableness, Medical Hypotheses. I was curious about the authors on this paper in this questionable journal, so I looked them up. The first author, Robert Bransfield, is president of the International Lyme and Associated Diseases Society, which is weird, because he's a psychiatrist. This association aligns itself with the viewpoint that current diagnostic testing for Lyme disease is faulty and encouraging people not to rely on test results for Lyme's (see point 5). In some courts, this insistence that the microbial presence of the causative agent in Lyme's is elusive enough to evade all testing and that some people thus suffer chronic, undetected Lyme is considered woo. He's referred to as a "Lyme warrior" by some (warriors are big in the woo world). There is a bit of a cottage industry around this one.

I also looked into the other authors. What I found is something that I've seen again and again: the hypothesis echo chamber, in which the only people who continue to talk about the hypothesis are the ones who devised it in the first place. And offer "tea recipes" as a cure. Or are allied with non-standard practices and have also published in Medical Hypotheses. Alt-Med conferences on chronic Lyme and/or autism, papers in Medical Hypotheses, LLCs. Does not impart confidence.
Mielke said she thinks that Mary contracted Lyme disease from her mother during the pregnancy, which played a big role in Mary's development of autism. He started intense treatment on Mary's Lyme disease, and the outcome was successful beyond their expectations.

"As we treat Mary for her Lyme, some of her check list autism symptoms are disappearing," Tina said.
"For her to wake up, smile and giggle and laugh .. we haven't heard that for years," added her father, Danny.
Miekle told FOX40 the severity of Mary's autism may mean she'll only improve minimally, but for the Hendricks even small improvements translate to huge miracles.
"I have had patients in my practice with autism, who when we treated their Lyme disease, their autism improved so much that they were no longer autistic," Mielke said. 
Again, where are the data on these patients? Is it actually possible to become "no longer autistic" as a result of a treatment in the years beyond early childhood? A search of PubMed on various term combinations yields no such evidence, although some people do appear to develop out of the diagnosis.

And finally, the selected expert: The expert selected for this story is Dr. Lynne R. Mielke. This Dr. Lynne R. Mielke. This Dr. Lynne R. Mielke lists biomedical "treatments" for autism on her Website that include hyperbaric oxygen and detoxification, which includes intravenous infusions of chelators ("heavy metal detoxification agents"), and both treatments may actually do harm. Oh, and there's a page labeled "vaccine issues" which offers up equivocation about vaccines, against the evidence-based guidelines of the American Academy of Pediatrics. Based on what she writes on the site, she is a DAN! (Defeat Autism Now!) practitioner. In other words, this is wall-to-wall non-evidence-based therapies for autism. Is Lyme mentioned on the site? Why, yes, it is. From the page:
In general, at this time Dr. Mielke will not be the prescribing doctor for the complex antibiotic and herbal protocols that chronic and acute Lyme patients need. She will refer patients to the appropriate ILADS physician for that. However, she will work closely with those doctors, making sure that the Lyme patients have all of the additional therapies that they need for an optimal treatment outcome.
Echo chamber and logrolling in our time, anyone? The choice of this "expert" with a clear dog in the hunt for input about a putative Lyme-autism link was a massive fail.

The bottom line: This "news" story with its sciencey headline misses the science entirely because there is none. It uses an "expert" with a clear dog in the hunt -- her clinic offering non-evidence-based autism "treatments." It cites "doctors" when only one is quoted. It uses a single case to illustrate a broad, unsupported statement. It offers zero counterpoint or information from anyone about (a) whether chronic/undetected Lyme exists or (b) whether there is any science supporting the link asserted in the headline. It offers nothing in the way of a scientific study to support what it says.

In other words, "fair and balanced"? Um, no.

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A version of this essay was previously published at biologyfiles.fieldofscience.com.

Friday, January 27, 2012

The Misguided Movement to "Cure" Autism

Kurt Gatejen
www.pseudocognitive.blogspot.com


For over two decades, my wife and I have ridden an emotional roller coaster of the sort quite familiar to most parents of special needs children. I’m not going to detail those experiences here for two reasons. First, that topic has been covered extensively all over the web, and second, I’m averse to expressing in a grand chronological and developmental scope events and feelings that may be completely misinterpreted as some kind of “woe is me” tale.

I don’t begrudge anyone's need to write about their emotional struggles; it can be very therapeutic for some people. While I may on occasion comment on particular difficulties in the lives of families with autism, I will not ever write an epic saga of that nature. The truth is, despite the many challenges we’ve encountered (and the seemingly intractable problems that loom in the future), neither my wife nor I would ever trade for a more stereotypically storybook family narrative. The joys and rewards of raising our two sons, both of whom have autism, have far outweighed the difficulties and heartache along the way. Instead, I’d like to address the issue of “curing” autism.  I’m not talking about treatment or prevention, although those are certainly fertile topics for discussion as well. I’m specifically referring to the opinion held by some that autism is something we should seek to remove from people who have it. Got autism? No problem; we’ll just take it away and you’ll be ... well, you’ll be someone without autism. Yeah ... someone, but who?

Cure autism? If by that you mean taking people who have autism and somehow “fixing” their neurology in some way so that they no longer exhibit any of the mental and behavioral traits associated with autism, I have one question (ignoring the obvious one of whether it’s even in the realm of possibility): Why? 






My sons are who they are due to variables both genetic and environmental far too numerous to count or fully identify. Their autism isn’t what they are; it’s part of who they are. I love my sons. Why would I want to change who they are? Would they want to change, to the degree that their personalities, for lack of a more precise term, are dramatically altered? Would they choose to give up some of their unique qualities, interests, and ways of seeing the world that are influenced by their autism?

My oldest son, to the best of our knowledge, isn’t able to understand the question.  What would the cure advocates propose for him?

Wednesday, January 25, 2012

DSM 5 Autism Criteria: Clarifying Impact, Taking Action

Interview with Dr. Gil Tippy
Clinical Director of The Rebecca School, Manhattan, New York
www.drgiltippy.com

How are the DSM criteria for autism changing? From the official site:
"A single spectrum disorder [i.e., folding in Asperger Disorder and PDD-NOS] is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints.”

"Three domains become two:

1)     Social/communication deficits
2)     Fixated interests and repetitive behaviors

"[because] Deficits in communication and social behaviors are inseparable and more accurately considered as a single set of symptoms with contextual and environmental specificities."
We spoke with Dr. Tippy about what the proposed revisions to the DSM 5 will mean for Autistics, autism families, and autism professionals. Dr. Tippy also outlined actions everyone in the autism communities can take to prevent these changes from cutting off critical autism services and support.

Why do you think people are so concerned about the DSM 5 changes?

It's important to remember that these changes are not new news. They've been in process for the past four years, and these guideline changes have been posted publicly for the past 18 months. What has happened is that Dr. Fred Volkmar, who used to be on the committee but left the working group, decided to do a study to see how many kids diagnosed under the old criteria would meet the criteria for the new Autism Spectrum Disorder diagnostic category.  His study concluded that some of the kids who previously were diagnosed with PDD-NOS and Asperger Disorder would no longer meet the criteria for Autism Spectrum Disorder. The working group that is developing the new criteria felt that [Volkmar's] study did not take into account that a good diagnostician, a good Clinical Psychologist for instance, would look carefully at the child in light of the new criteria, and then diagnose appropriately.

I have to say I agree with both sides of this disagreement. I think that no child or adult, previously diagnosed with an Autism Spectrum Disorder by a thoughtful clinical professional should worry that he or she, or their child, will not be diagnosed appropriately with the new criteria for Autism Spectrum Disorder. However, I do believe that there is plenty of reason to worry, and for raising the alarm, Dr. Volkmar is to be thanked.

How will the changes to the DSM 5 affect eligibility for an autism diagnosis and services? That seems to be folks' concern, based on Dr. Volkmar's report and his statement about nipping the "autism surge" "in the bud."

The changes are not going to affect people who are diagnosing or treating people with autism. A good diagnostician is careful and thoughtful, they should see the overall picture of a person, their symptoms. The new criteria urges talking to family and other treatment professionals, but -- again -- a good diagnostician should already do this.

People won’t necessarily lose services because of the change in criteria. If, for instance, you had Asperger Disorder, you wouldn't lose support -- you would lose the Asperger diagnosis and instead have an autism diagnosis, on the less severe side of the spectrum. Same with PDD-NOS -- if you currently meet the criteria for that diagnosis, you'd meet the new criteria for an autism diagnosis. It’s worth mentioning that many kids and adults with Asperger's and PDD-NOS aren't getting appropriate services right now under the current diagnoses!

The problem is not with the changed definition or service providers, it's with the people paying for services. People who have services now may lose them because insurance companies could use the new guidelines to disqualify people. This makes sense; corporations' missions are about cutting costs; they may use the new criteria to say, "Well, you don't have a psychiatric disorder." While it's reasonable for companies to cut costs, it is not reasonable if it unfairly affects quality of life.

It all depends on the way in which the federal government makes these criteria part of the Affordable Health Care Act, which will be finalized by 2014. What is critical, where we need to take action, is in letting our state and federal legislators know that we vote, that we are watching this issue closely, that we demand appropriate coverage for autism, and that we will not compromise.

The federal government will be watching key states like California and New York closely to see how they legislate autism coverage -- and will use those rulings as the basis for its decisions. Once everything is formalized, local school boards will respond to state guidelines, which will in turn be based on Federal guidelines. So, it's especially important that we all take action now at the state level, especially those of us who live in key states.

Everyone needs to use their voices, needs to get together and say, "You can't exclude us! You can't legislate us out! We have power!"

What will the new criteria mean for adults?

It affects all ages; it doesn't matter if you are 60 or your child is 18 months old and starting to show signs of autism.

What are the goals of the DSM 5 Task Force with regards to autism and the new criteria?

I think the intent of the DSM 5 task force is to make things cleaner and easier for the people who will be using the criteria. This may be especially useful for diagnosticians with less experience. (Task force member Catherine Lord has also stated a goal of ensuring "...autism was not used as a 'fallback diagnosis' for children whose primary trait might be, for instance, an intellectual disability or aggression.")

I work in a school, I know there are other forces at hand -- and if you don't speak up, people who don't have you or your child's best interests at heart will be making decisions that affect them. We have to speak up, we have to do our own lobbying -- because you know that other special interest lobbyists are going to be trying to affect policy as well.

I don’t believe that these clinical diagnostic guidelines will affect one thing, not until state legislation passes, at which point federal guidelines will be based on the new state guidelines as an example of what's reasonable. Once the Affordable Health Care Act becomes law in 2014, federal legislation will determine who gets paid, and who gets treated.

People need to understand that the DSM 5 will be published, the issue is how people are allowed to interpret it. Again, advocacy groups need to get out in front!

What do the new severity scales mean? [Follow link, click Severity tab]

The new criteria will have a scale for social/communication, and restricted interests: Level 1 is "Requiring Support," Level 2 is " Requiring Substantial Support," and Level 3 is "Requiring Very Substantial Support."

That's where we need to lobby -- we need to make sure insurance companies aren't allowed to split people off due to their severity level, or say "We're not going to pay for a level one, for an 'awkward adult.'" This is especially important once young adults get out of school and enter society.

Officials get elected based on promises to cut costs -- what if they say, "We'll restrict services to Level 3! That's how I'll balance the budget!"? People are right to be worried!

What is your overall message about the DSM 5 revisions and autism?

The proposed changes in diagnostic criteria are worth being worried about, but not because the clinicians will exclude people from treatment; they will continue to diagnose and treat appropriately. If you, or your son or daughter has an appropriate diagnosis on the Autism Spectrum now, responsible clinicians will find that you or your children meet the criteria for Autism Spectrum Disorder under the new guidelines. Again, the place where we need to put our energies is in advocating with our elected officials on the state and federal level, to not allow our children to be excluded from appropriate treatment based on the new severity scales associated with the diagnosis.

The time to do this advocacy work is now, as health care legislation is in the works, and powerful lobbying groups will go in and speak to your legislators if you don’t. Parents and people with the diagnoses need to be the people who are directing this legislation. If you do not feel like you can go directly to your representatives, go to the not-for-profits you support who hire lobbyists to influence legislation.  Tell them that you do not wish to have them advocate for one behavioral treatment or another, but that you want them to advocate for appropriate services under the new law. Insist with them that they need to follow your wishes, or you will no longer support them financially. There is power in numbers, and if we all joined together we could assure a better future for ourselves and our children!

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Additional reading:

Monday, January 23, 2012

Touch: Autism and Special Needs on Fox TV

Fox TV's new Kiefer Sutherland series Touch premieres in two days, on Wednesday January 25th. We're intrigued, and watchful. The series revolves around a non-verbal child, Jake, who understands numerical patterns other people can't perceive -- and his father Martin's attempts to understand not only what Jake is trying to communicate, but Jake himself.

From the series description at Fox.com:
Blending science, spirituality and emotion, the series will follow seemingly unrelated people all over the world whose lives affect each other in ways seen and unseen, known and unknown. At the story’s center is MARTIN BOHM (Kiefer Sutherland), a widower and single father, haunted by an inability to connect to his emotionally challenged 11-year-old son, JAKE (David Mazouz). Caring, intelligent and thoughtful, Martin has tried everything to reach his son. But Jake never speaks, shows little emotion, and never allows himself to be touched by anyone, including Martin. Jake is obsessed with numbers—writing long strings of them in his ever-present notebooks—and with discarded cell phones.
Some folks are already skeptical. Alyssa Rosenberg at ThinkProgress is critical of series co-creator Kring for "inventing a magical alternative to autism," and Ellen Seidman at Parents.com says:
I like it in concept because it’s a TV program about a kid with special needs, which isn’t very common (understatement alert). I don’t like it concept because I’m concerned it’s going to take the focus away from the amazing reality of our kids—something many people still don’t get. And, count on it, some people are going to think kids with autism actually can do this, feeding into the stereotype of savant abilities.
Matt Web Mitovitch of TV line reports that series star Sutherland believes Touch will highlight the potential of those with autism, and the need for the rest of society to try to better understand autistics:
“The Danny Glover [professor] character is interesting,” says Sutherland. “He believes that we have misdiagnosed a group of people that actually are at a much more advanced form of communication, but because we don’t understand it we’ve diagnosed them with what we can best understand.”
That exploration of what autism is and could be was born of the fact that [series co-creator] Kring has a son who lives with the condition; as such, he’s taking care to see that Touch‘s fictional aspects are founded in scientific fact.
Autism is no longer mentioned on Fox's official Touch site, but Fox secured an autism and special education expert, Joanne Lara, as technical consultant on the pilot. Joanne also advised on the role of Jake, the eleven-year-old protagonist. We spoke with Joanne last week; here's the part of our conversation that centered on the series' special needs themes.

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In developing the character of Jake, did the writers or actors consult with people who have autism themselves, like Stephen Shore, or any of the autistics you know?

No. The head writer knows his way around this territory, that's all I'll say. It's very close to him. He doesn't need to confer with Stephen.

My role was more about "are we doing this right?" It wasn't as if the writers said, "Well, what do you think we should do now, Joanne?" They wrote it, then presented it and said, "Look, does all of this line up correctly? Is this the way a social worker would come to a house or an apartment in New York?"

It was also a technical advisor role; I'd be the one who did due diligence in talking with a social worker in New York, making sure they were wearing the right badge, or asking them how they dealt with runaways -- did the supervisor come in? That's important because each state is different in the way the deal with these matters. Those aren't necessarily the kind of questions that Stephen Shore could answer -- you need someone like myself who's going to spend half a day tracking down someone and asking, "If you find a kid like Jake at the top of a cell phone tower in New York somewhere, how is everyone going to respond?"

You also worked on making David Mazouz's role of Jake more believable?

I gave him a marble, based on my background in method acting, where it's all about an article -- because it would be a realistic piece of property, something he would actually hold. If he didn't have a disability, he would keep it in his pocket, and the moment he touched it, that's when the physicality would come in, in terms of "this is how I walk when I hold this marble." That's really method acting. So it worked for him as the character, and as an actor.

Is it true the creators didn't want this to be a "doom and gloom" presentation of autism? That instead this kid Jake has special skills, and it takes patience and understanding -- an understanding of the potential of his abilities -- to save the world?

Exactly -- using what we know, and what the head writer knows, as a template for a do-gooder little guy with super powers. He could be an action figure hero! But he's only eleven, and he doesn't talk. It's quite brilliant, I think. It's really something. I'm pinching myself that I got to be involved -- I was called and told only that it was a pilot -- but then it turned out to be Kiefer Sutherland and all these people. I was so pleased that they chose me!

Does the show talk at all about why he has autism, or is it presented straight -- this is a kid who needs support, and his father is figuring out how best to support him?

It's a given that he already a disability. They don't say the word "autism." They did at first, when I was on the set -- but I heard they reshot and re-edited that scene, so I'm not sure how they're going to reveal that -- all we know is that he has a disability, and that he's a savant with numbers.

The way that we know there's a problem is because social services has been called, because maybe this guy isn't such a good father after all. That's the setup of the pilot. You have to have a problem to have a solution, and the problem is that maybe Kiefer Sutherland isn't such a good father if he lets his son climb up cell phone towers.

It's not like Parenthood, where the first line is "Oh, he has Asperger's! What are we going to do?" It's not like that at all. It's more like "there are some problems here, let's figure them out, let's figure out why he would climb up to the top of a cell phone tower! Let's figure out why everything he does has to do with numbers!" And I've known real numbers kids, I've worked with them -- sort of like the [coincidentally named] autistic savant boy Jake recently interviewed on CBS -- I'd like to see how they're doing now with their numbers, and how that played out.

At TPGA, we try to help people understand that autism can be OK, it's a different way of being -- and we also want to give them role models, show autistic people who don't just play a role in neurotypical characters' journeys of self-discovery. It sounds like Jake is a fully-fleshed out character in his own right, who carries as much weight as anyone else?

Oh yes, David's the star. He and Kiefer are the stars. And you're right, in Parenthood it's the other, the parents are discovering themselves through their child -- that's not what happening here. The child is the one climbing up the tree, and we're the ones who are throwing the rocks and bringing him down.

So it sounds like he's the one in control -- and the problem is that everyone else needs to catch up with him, and understand him?

That's right -- that's exactly right -- and that's the message.

That could be applied to autism in general!

Well, like I said, the head writer really knows his way around this territory. I think that's not by accident. I think that's the way he planned it, that's what he wants. And there is where the interest is going to lie, not only for individuals and families and people who work in the field, but also the general public is going to go "Wow, I know someone who has a child with autism, but I always thought it was something different…"  That's an important message for everyone -- for the world!

So it's showing that autism is not just Max in Parenthood, it's not just Gary in Alphas, it's not just Rain Man -- there are kids like Jake who are non-verbal but incredibly intelligent -- so this could really add to the neurodiversity tapestry.

And not to mention the individuals themselves who are non-verbal and are watching it. Hopefully they'll see this and think, "Finally, someone's talking about me!"

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We'd like to know what Autistics, families and friends, and professionals think of the show. You can comment about the preview below -- and if you watch the pilot, come on back and let us know what you thought of that, too. 

Friday, January 20, 2012

A Culture of Abuse: Autism Care in France

David Heurtevent
www.supportthewall.org

France's population is about 65 million. Assuming an autism prevalence of about 1 in 110,  approximately 590,000 autistics live in France. The French education system contains about 13 million students in a two-tiered educational system: most children attend schools overseen by the Ministry of National Education, but approximately 100,000 students found to have significant disabilities -- very few of whom have autism -- attend schools run by the Ministry of Health. Most autistics are not educated at all.

Significantly, childhood psychiatry in France is dominated by psychoanalysts, who (broadly speaking) view childhood behavioral issues as evidence of disturbances in the relationship between the child and the parents, particularly the mother. Psychoanalytic treatment therefore is not behavioral or educational, but seeks to change the child's emotions. According to Chantal Sicile-Kira, whose autistic son was born in France, autistic children "had no right to an education. Instead, they were enrolled in day programs on hospital sites, where they were treated with psychoanalysis. Parents had no right to visit the day program, nor did they receive any communication about what went on during the hours their child spent there."


For more information on autism in France see Wrong Planet's Autism in France: Psychoanalysis, Packing, and Other Travesties: Why it Matters and New York Times' Film About Autism Treatment Strongly Criticized in France.

Trigger warning: Explicit descriptions and photos of abusive treatment of autistic children and adults. -LD

Many of you readers who are not citizens of France may wonder why you should care about autism in France, and why I am inviting you today to help we French address the problems with autism in France. After all, foreign relations policies of unilateral interventionism and democracy promotion have failed miserably during the last decade, and the current economic crisis favors the idea that citizens of each country to think only of addressing problems within their own countries.

Instead, my belief is that the “moral duty to intervene” exists. In France, Human Rights infringements for autistic people are severe and persistent enough to mandate foreign intervention in the debate.

France is far behind other European countries in support of their citizens with autism, a problem that has a long history. In 2004, the trans-European autism organization Autism Europe brought France's autism policies to the attention to the Council of Europe, which condemned the French policy of educational segregation for autistic students. Successive autism plans by the French government have had little effect on improving the situation. One notable failure of each of the plans has been a complete disregard of the need for accurate information. None of the plans have included a requirement to collect any data. Thus, there is a real lack of data on autism in France, which the French government has acknowledged is a real barrier to effecting significant improvement in autism services.

What we do know: In France, 80% of the children diagnosed with autism spectrum disorders (ASD) do not go to school at all, according to government data. Contrast this figure with the United States, where the Individuals with Disabilities Education Act (IDEA) requires all public schools to provide education for all students. In the United Kingdom, where school is mandatory, a study by the National Autistic Society revealed in 2006 that exclusion from school for children with autism is 1 out of 5.

The few French children who do go to school often receive little support and rarely attend school more than a couple of hours per week. Two recent examples highlight this fact:

1) On January 3, 2012, the French government-controlled TV channel France 2 aired a report on a family living near Paris. Their eleven year-old son Ryan had only received 72 hours of schooling in 10 years, until last year! This year, after a previous TV show and after legal threats, a special education class accepted him, but only for 90 minutes of class time per day.

2) On January 4, 2012, a middle-school teacher on French National Public Radio (France Inter) discussed an autistic child assigned to her classroom, who had a classroom aide.  The teacher had received no training to support this student. The classroom aide was only in the classroom 12 hours per week with that child (of a total of about 28 classroom hours). Further, the Ministry of Education had decreed that the aide would not be allowed to work with him for more than two years as they feared a bond developing  between the aide and the child!

Clearly, the school system does not want children with challenging behaviors.

Turning to adults, French government data on psychiatric care reveals that 60% of the persons held in isolation units in psychiatric wards for more than 30 days are diagnosed with ASD. As Danièle Langloys, President of Autisme France said during the congress of the organization on December, 3 2011: “This figure does not include the persons who are undiagnosed, so the real figure could be much higher.” This raises the question: Why must autistics be held captive and isolated from others? Institutions and psychiatric treatments are the norm in autism in France from birth to death.

In the French medical system, most primary care providers are general practitioners (GPs). These physicians only receive one to two hours on ASD during their entire training. The physicians who are psychiatrists are still using outmoded diagnoses, such as “infantile schizophrenia,” “infantile autism,” or “infantile psychosis," even though autism organizations and the French Higher Health Authority are recommending better definitions of autism. However, there is a very significant resistance to change. Dr. Jacques Constant, a child psychiatrist, involved as an expert to the French Higher Health Authority, recently declared on France Inter: “It is true that many psychiatrists remain attached to old views, including classifications ... The situation is not perfect but relatively positive changes, in my opinion, have been made.”

Compared to American children, French children are diagnosed much, much later. The lack of training for professionals, and their psychoanalytical worldview advocating “laissez faire” often result in extremely late and inaccurate diagnoses. It is commonplace to meet parents whose children were not diagnosed until the child was 6 to 10 years old. The typical waiting list for diagnosis is two years.

Turning to other professions that could provide services to individual and families affected by autism, there are very few psychologists with autism-specific training. For example, in all of France, there is only one educational program that offers a master's degree in behavioral analysis.

The French government provides no funding to schools based in Applied Behavioral Analysis (ABA). As a rule, such schools are funded by parents. By contrast, child psychiatry treatments are funded by the French National Health System. France currently has only 23 institutions (not schools) with ABA programs for 700 children, whereas the need is at least 8,000 new places per year, based on birth rate and prevalence estimates. The adult situation is far more difficult. Marcel Herault, president of Sésame Autisme, a national organization, recently declared: “There are an insufficient number of places for adults with autism. It is a tragedy.”

This tragedy of bad care does not end there. Now, it is time to introduce three real human rights issues: extensive discrimination, a “treatment” known as Le Packing (which could also be called “torture”), and exile to Belgium.

Adults with autism face extensive discrimination. The most common is the lack of access to education and training for employment. Most adults with autism are institutionalized with low self-care skills as a result of failed educational policies. Even if they have the chance of being higher functioning (including most with Asperger’s  and PDD-NOS), autistic adults are discriminated against by employers. I myself faced the issue numerous times with employers, despite my three master's degrees. Worse, persons with autism often get denied access to resources dedicated to autism! “It is outrageous that institutions created for autism treatment do not accept persons with autism. Obviously I do not single out individual cases, but generally speaking there are folks that are trying to direct children or young persons with behavioral problems toward the exit. This is unacceptable to me,” recently declared Marcel Hérault, President of Sésame Autisme.


Autistics are subject to invasive care and conditions favoring sexual abuse. The best example of abuse in France is Le Packing, a barbaric practice which consists of wrapping autistic children, naked or stripped to their underwear, in cold wet sheets (at 50°F, 10°C), like mummies. Some teams even put the sheets in the refrigerator before using them. (Read a detailed description and critique of Le Packing at Support the Wall.) Today, in 2012, this technique is still used in 300 establishments in France. Le packing has been used on children with autism for over thirty years despite having never been subjected to any evaluation other than a few adult case studies.


In October, 2010 at the Ninth International Autism–Europe Congress, 18 of the world’s leading autism researchers signed a consensus opinion, “Against Le Packing: A Consensus Statement”
We have reached the consensus that practitioners and families around the world should consider this approach unethical. Furthermore, this “therapy” ignores current knowledge about autism spectrum disorders; goes against evidence-based practice parameters and treatment guidelines published in the United States, Canada, United Kingdom, Spain, Italy, Hungary, and Australia; and, in our view, poses a risk of preventing these children and adolescents from accessing their basic human rights to health and education.
There has also been an active on-going campaign by of the organization Vaincre l’Autisme, Manifest International Contre le Packing (International Manifesto Against Le Packing). Nevertheless, France has refused to ban this practice.

Because of the lack of educational opportunities and the risk of abuse, many parents with autistic children choose to exile their children to Belgium, so that they can receive better care. (Belgium has 3 official languages, French, Dutch, and German. About 40% of Belgian citizens have French as their first language.) Recently,  Radio Télévision Belge Francophone (RTBF) has estimated that there are 3,500 to 5,000 French citizens with disabilities who are “medical refugees” in Belgium. Some children cross the border every two weeks to go visit their parents in the Paris area. Many of these children attend public special-education schools in Belgium, financed by the Belgian government. More surprising, France has created some offshore centers in Belgium to host its own citizens, which are financed by the French National Healthcare System. As both countries are starting to feel serious financial turmoil, it is uncertain how this situation will unfold. Until recently, demand for schooling from French nationals seemed to be on the rise in Belgium. Yet France recently signed an agreement with Wallonia, the French speaking part of Belgium, probably in an attempt to legalize the situation and to curb the process that could be characterized by some as a population displacement of “medical refugees.”

It has been eight years since the resolution against France at the Council of Europe and three years since the start of the campaign to ban Le Packing. The situation of autism care in France has yet to change. At best, the French Government is starting to feel the heat and tries to cover its tracks by declaring 2012 the year of National Attention for Autism, by creating a study group at the French Parliament and by issuing some reports. Autism organizations are weak because they accept funding from the government for awareness campaigns through a new entity, Collectif Autisme, and because they are fragmented. In reality, organizations have already been told that no additional funding will be available due to the current economic crisis. In this context, there is little hope that the humanitarian situation will change unless the international autism community becomes involved.

On January 26th, Support The Wall will launch an international petition to ban Le Packing, and to pressure France to significantly improve autism care rapidly. This petition will be launched from a live event in New York City and will viewable on our website www.supportthewall.org

Thanks to your support, self-advocates and parents will prove that a viable international autism community can exist, and that wherever we live basic human rights must be respected.

We shall never accept being treated as second-class citizens. It is past time to promote change in autism at the international level. It is now time for the international autism community to step in and to say enough!

Wednesday, January 18, 2012

If You Can't...

Chavisory
www.chavisory.wordpress.com

I got to open my presents early for Christmas this year, as my mother was going out of town to see family. I told her I hadn’t had a chance to wrap hers yet, so she could open it when she got back Christmas night.

We didn’t get to finish opening presents that night. We had a yelling match about the true nature of the autism spectrum.

I was diagnosed with Asperger Syndrome a year and a half ago (though I’d known the truth for several years previously), which I guess that most people in my life probably know by now because I decided that it was part of my life that I wasn’t going to make any particular effort to hide, because I had nothing to be ashamed of.  I really have no idea what people think of me as a result, because I stopped concerning myself at a pretty early age with what people think of me. Because living in thrall to the opinions of people who don’t have to live your life is no way to live at all.

Anyway, so it had started to feel like old news that I was autistic. I’d started to settle in to living as a whole person, without an emotional double life.  But then, I was rather emphatically asking my mother not to describe a young cousin (currently in the process of being evaluated for autism himself) as not having a personality, because such language is often used to justify all kinds of mistreatment and prejudice against us, besides not being true.

“But you’re not autistic.”

Which is where my brain froze up.  Because honestly, I don’t know what else I am anymore.  Before I understood what autism really was, I didn’t know what I was at all, except for lost and completely alone in the world.

“I don’t think of you as really autistic.”

This is the hissy fit I had in my head after that conversation, after my verbal skills were drained and we’d both given up. It’s no longer directed at my mother (we had a good talk the next morning), but at the thinking that I was shocked to find is still common: that real autistic people don’t have personality, native intelligence, skills, or potential; and that anyone who’s achieved any degree of independence or success isn’t really autistic.

Because where’s the room in that thinking for things to get better for any autistic people?

If you can’t see me as autistic, then you need to revise your view of autism to take into account real people.

I am “not like that kid” who runs around screaming, or who can’t communicate at all, because I grew up.  And because we’re all different people, who cope with unique profiles of challenges and gifts in individual ways.  I am “not like that kid,” because, to be perfectly literal, I am not that kid.

We are as unique as the stars. They say autism is a spectrum, but I don’t think that really describes its variety and complexity well. It’s not a simple progression from mild to severe. I often say it’s more like a constellation, or galaxy (which TPGA editor Liz Ditz pointed out to me has the added metaphorical benefit of being a 4-dimensional construct; it also changes through time for every person). There are people with far more severe problems with independent living than I have, who are smarter, better writers, incredible artists, or just incredible people.

I am far more fortunate than many, and not as lucky as others. I know this; you don’t need to rub my nose in it. I know that I’m blessed beyond all reason.

If you can’t think of me as autistic because you see me as a competent adult, you didn’t know me as a child.

If you can’t think of me as autistic because I’m verbal and communicative … those things are actually features of Asperger Syndrome, a form of autism. We still have major communication difficulties and differences.

If you can’t think of me as autistic because I’m so good at my job … please consider that it’s a job that largely entails “keeping track of everything that no one else wants to” (to paraphrase the college instructor who introduced me to stage management as a career option), and working with a collection of people who are also socially marginalized, passionate, obsessive, highly sensitive, and reliant on consistency and repetitive and ritualized behavior.  (Actors were some of the first people to seem to want me the way I was.)

If you think I can’t be autistic because I’m so good at multitasking, well, I’m not. Good at multitasking, that is. What you see when you see me do my job is the result of copious amounts of planning, plotting, mental choreography, scripting, queuing, pre-thinking, making spreadsheets and flow charts, preparation and learning from experience, and excellent assistants.  (Stage management and life with Asperger’s are both centered around dealing with a quantity of data that a single human being is not truly equipped to handle.)

You get good at anything you do for a long time. I got good at my life when I stopped trying to live one that I realized I could never have.

I’m autistic. There’s not another or a better word for what I am. It’s one I searched long and fought hard for. It is home. It is the reason I wake up in the morning knowing what universe I belong to, and go to bed at night knowing I’m not alone in it.

If you can’t think of me as autistic, it’s not so much for my sake that I care, but if it’s because you can’t believe that autistic people can be intelligent, kind, good-humored, good friends, good at our jobs, capable of love, highly-skilled or talented, complete human beings? Then you take chances for jobs, education, friendships, and quality of life away from autistic people who are a whole lot less lucky than I am.

Monday, January 16, 2012

Having Words with Autism

John J. Ordover
www.sohodigart.com

In this country we like to fight things, whether it's the Fight Against Poverty or the Fight Against Drugs or even the Fight Against Gentrification, we sure do like to fight. We fight cancer, we fight child abuse, we give out soup to fight hunger, we fight, and fight, and, as on The Simpsons, we fight fight fight fight fight!

So, is it wrong to say we are fighting autism when we stand up for those on the spectrum? My wife, who has an Asperger's diagnosis, says it is. Others agree; others disagree, as a Google search for the term “fight autism” brings back over half-a-million listings. Here's the word on why this phrasing issue is important to me and to others trying to raise money to help people on the spectrum:

At 6pm on February 16th, 2012, at 6pm, at The SoHo Gallery for Digital Art, 138 Sullivan St. New York, NY 10012, www.sohodigart.com, the mothers at my son's school for autistic children will be presenting HOT SOUP/COLD NIGHT -- a fund-raising event featuring bread, beer and home-made soup straight from their kitchens. Just the thing for someone trudging past the gallery door along a snowy New York City street. You also need to know that we're Jewish and my son's school is in a predominantly Jewish neighborhood in Brooklyn. You'll see why in a second.

To maximize the return on our investment of time and money, we of course want as many people as possible to hear about our event, show up and buy soup. That means sending out a press release. Over my years in publishing and marketing I have written hundreds of press releases so I didn't expect to run into any difficulty on this one, but I did, because I know in my marketer's heart that the catchiest phrase to put under the title of the event is:

JEWISH MOTHERS FIGHT AUTISM WITH CHICKEN SOUP

That is, in my opinion -- which I respect highly -- the phrase that pays; it's punchy, it scans nicely, is neatly balanced and fits easily into the space available for a headline. It falls into the “fight cancer/fight drug abuse” phrasing that the media expects. When I proudly told my wife what I had come up with, she told me (as, full disclosure, did the editors here at TPGA with whom I consulted) that “FIGHT” was not an appropriate term to use. I was also told the terms “BATTLE” “CONFRONT” and “FACE” were inappropriate, as was any term that implied autism was something to be fought against. That we fight for people with autism, not against autism itself, and that my usage was offensive. The problem is

JEWISH MOTHERS FIGHT FOR CHILDREN WITH AUTISM WITH CHICKEN SOUP

is clunky, too long, and does not conform to the expected phrasing. The same problem came up with all the many -- very many -- “fight for” rather than "fight against" variations I tried. If I used any of them in the press release, the story would be less likely to be picked up, we would get fewer people at the event, bring in less money for my son's school and those places that did cover it would likely come up with the same offending phrase themselves.

Stumped on how to serve both masters -- the need to market, and the need not to offend the autism community, I reached out to my friends who are professional marketers; they, too, were unable to come up with a punchy phrase for the release using a “fight for” mindset (although one suggested changing the title of the event to SOUP FOR YOU! which might yet happen).

I'm sure I'm not the only one facing this particular quandary. All over the country - and for that matter the world -- there are people sitting down to write a press release for their autism fundraiser; I am not the only one who needs to get word out to make their fundraiser a success, and not the only one banging my head against a keyboard trying to decide whether to go with phrasing something so as not to offend the autism community or go with something more likely to be covered by the media.

So what do I do? I can think of three alternatives:
  1. Going with my original, more media-friendly, less autism-friendly phrasing, and readying myself for the community blow-back.
  2. Putting subtle notice of the event into this article, by mentioning that At 6 PM on February 16th, 2012, at The SoHo Gallery for Digital Art, 138 Sullivan St. New York, NY 10012, www.sohodigart.com, the mothers at my son's school for autistic children will be presenting HOT SOUP/COLD NIGHT -- a fund-raising event featuring bread, beer and home-made soup  straight from their kitchens and hoping it slips by the editors [it didn't – the Editors].
  3. Passing the buck to the highly intelligent, wildly creative, extremely generous, and deeply courageous readers of this blog. Do you have any suggestions for punchy-but-inoffensive phrases I could use? I have a Friday, Feb 3rd deadline to get this to Time Out magazine and other local media. 
So -- any ideas? Best one gets a free bowl of soup.

----

Update: John asked us to paste his comment below here too. -SR

Since I'm on a deadline I'd like to see if I can refocus the discussion here. The question isn't whether it would be right or wrong to use the "fight autism" phrase. The problem is that it is wrong but would be effective, which is the dilemma since effectiveness is vital. The question is very specifically "What effective phrase can I use instead?"

Headlines are by their nature hyperbolic -- for example the headline could be "15 Year Old Actress Has Two Children!" and the article would be about how she supports two orphans in Haiti and is building them a new house. Keeping that in mind, any suggestions?

Friday, January 13, 2012

Tired (of Autism Misrepresentation)

Lydia Brown
autistichoya.blogspot.com

From the editors: We hope that even veteran autism parenting advocates and self-advocates will consider this post part of their neurodiversity education, along with Todd Drezner's recent HuffPo article Nickels, Dimes and 'High-Functioning' Autism -- and that it leads to productive reflection and discussion.

From the author: Trigger warning: This is mostly about ableism and a response to other, very triggering things, as well as including lots of direct quotes of ableist stuff.

An accessible audio recording:


I'm tired of being misrepresented. I'm tired of seeing the principles of self-advocacy misrepresented. And I'm tired of seeing the autism rights movement misrepresented.

Let me be clear. I'm not talking about allies, or about people who were just thrust into Autismland and don't yet know much, if anything, about the constant conflicts that erupt here. This isn't about you.

This is about people who write things like John Elder Robison's "Looking forward at the autism spectrum," or Mark L. Olson's "Autism's Fly-Over Population," or the comments on Susan Senator's "The Parents Vs. The Autistics." It's been a week of frustrating, misleading, and outright hurtful writing.

And I'm tired.

I'm also a little bit furious and a little bit frustrated and desperate to write something. My hands are numb right now, and it has nothing to do with my feelings. It's kind of cold in here, actually.

Some background. John Elder Robison, as most people know, is famous because of his memoirs, Look Me In the Eye: My Life with Asperger's. So he is Autistic, though you'll almost never hear him use that word to describe himself, as he prefers the supercilious Aspergian. More recently, he wrote a book called Be Different: Adventures of a Free-Range Aspergian. Fairly recently, I think around 2009 or perhaps 2010, Robison accepted an appointment to the scientific advisory board of Autism Speaks, an organization notorious for its lack of meaningful representation of Autistic people in leadership positions as well as its harmful and ableist rhetoric. I personally cannot comprehend why any Autistic person in his or her right mind, fully informed, would want to work with or for Autism Speaks, but there you go.

And Susan Senator is the non-Autistic mother of adult Autistic son Nat, as well as the author of Making Peace with Autism, The Autism Mom's Survival Guide, and Dirt (a novel.) I don't always agree with her, but she writes well and is genuinely interested in engaging and dialoguing with Autistic people as equals rather than interesting curiosities. Her most recent article, linked above, engendered a spat of disgusting, disturbing, and sometimes outright frightening comments, mostly from non-Autistic parents.

I think I've read enough disgusting, disturbing, and frightening things last week. I've been triggered pretty badly a few times. In fact, I'm slightly worried about opening the tabs next to this one in my browser, where I have those three pages open, just to get the quotes for this post. If you've read this blog before, you've probably caught a significant change in the tone and style of this post from previous ones. And it's because I'm sick and tired of stuff like this.

(I'm inserting a second trigger warning here: a long list of direct quotes of incredibly ableist and possible very triggering stuff.)
"High-functioning autistic and Aspergers self-advocates who put themselves on an island by arguing that only the disabled can and should decide about the disabled to the exclusion of parents, family, caregivers and outsiders need to accept that they are only advocates for themselves, not the entire disabled population."
-Mark L. Olson, LTO Ventures and parent
Wrong.

All self-advocates are not "high-functioning autistic and Aspergers" as Olson so arrogantly generalizes. The assumption that Autistic people who do things like blog or use speech must therefore automatically be "high-functioning" is fallacious at best and actually harmful at worst. I know firsthand of not a few Autistic people who cannot consistently perform activities of daily living such as cooking, cleaning, keeping a schedule, traveling, or maintaining hygiene without assistance from a family member, friend, or aide. Yet some of those same people often face ridiculous assertions that because they must be so high-functioning or "just Asperger's," their advocacy clearly is illegitimate and unfounded.

Other self-advocates might never be called things like "high-functioning" were you to meet them in person. Amy Sequenzia, of Rockledge, Florida, an Autistic self-advocate who regularly meets with government officials and expresses her opinions rather eloquently in the media and elsewhere, does not speak and travels everywhere with an aide. She communicates by typing via alternative and augmentative communication. (By the way, Amy prefers to refer to herself as "autistic" rather than "person with autism." That too is not something that only "high-functioning people with Asperger's" do.)

And Sequenzia is not alone.

Self-advocates Larry Bissonnette and Tracy Thresher are both non-speaking Autistic adults who communicate via AAC. In childhood, they were presumed mentally retarded and ineducable. They were in segregated classrooms and never mainstreamed or integrated with students without disabilities. Bissonnette and Thresher starred in the 2011 documentary Wretches and Jabberers, which follows their advocacy. Both men have served on the Board of the Autism National Committee, an organization that includes both non-Autistic and Autistic people in the fight for civil rights, and whose constituency has traditionally been non-speaking Autistic people (or Autistic people with limited speech) and their families.

They too are not alone in fighting for Autistic rights. Sequenzia, Bissonnette, and Thresher are only three of innumerable non-speaking Autistic people who are self-advocates. The majority of non-speaking Autistics face even more discrimination than do those who have learned to use speech, and by no means are they excluded from the model of self-advocacy, self determination, and autism rights. Olson's assumption that all self-advocates are "high-functioning autistic or Aspergers" is grossly inaccurate and egregiously hurtful.

Non-Autistic parent Todd Drezner, in his 2011 documentary Loving Lampposts: Living Autistic, further explains why the use of the disputed "low-functioning vs. high-functioning" dichotomy is invalid and not useful when discussing Autistic people, and especially when dismissing so-called "high-functioning autistic self-advocates." In one segment of the documentary, Drezner interviews an elderly non-Autistic mother to an adult Autistic man in his 60s. "Lyndon is employed and lives by himself in his own apartment," says Drezner. "Is he high-functioning? His speech is severely limited and he needs support to perform life's daily tasks. Is he low-functioning? And would it make any difference at all in Lyndon's life if you could answer these questions?"

And what about people like Dora Raymaker? A board member of the Autistic Self Advocacy Network (ASAN) and Co-Director of the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), Raymaker does speak but prefers to communicate by text-to-voice. When she speaks, her words are not always articulate, as you can hear in Loving Lampposts: Living Autistic, and could lead the uninformed -- or people like Olson -- to make the assumption that she is "mentally retarded." Clearly, that is not the case.

Olson's second mistake is his blanket assumption that the principles of self advocacy seek to exclude "parents, family, caregivers and outsiders." That is not true. Self advocacy seeks to ensure that Autistic voices are always heard and prominently so in any conversation about autism, along with the voices of parents, family, caregivers, and outsiders. Autistic adults welcome non-Autistic allies. People like Todd Drezner, Susan Senator, Kristina Chew, Kim Wombles, and Amy Caraballo are living proof of that. (And again, these names are only a very representative few of the innumerable allies, many of them non-Autistic parents of Autistic children, and some of children who might be described as "low-functioning" or "severely autistic" -- insert a collective gasp of "WHAT REALLY THEY'RE NOT PARENTS OF ASPIES?" here.)

The principles of self advocacy are not that only disabled people can speak for disabled people, but that they must be involved with any advocacy. "Nothing about us without us" has been a motto of disability rights for a long time. There is nothing in that statement that suggests that non-disabled people have no right to be part of advocacy. What is at stake is that the most important stakeholders -- the people for whom the advocacy is occurring -- are routinely excluded, marginalized, and treated with the kind of contempt that Olson displays.

We, as Autistic people, whether we have been called "high-functioning" or "low-functioning" or both (at different times in our lives), have the right not only to advocate for ourselves individually, but for the rights and needs of Autistic people at large.

What I want to know, really want to know, is what parent in his or her right mind, would not want his or her child to advocate for him or herself? And what parent would not be proud of his or her child advocating for other Autistic people? When a non-Autistic sibling of an Autistic child starts an advocacy or awareness initiative, parents everywhere applaud. Why do you react with horror when Autistic youth and adults want to make the world a better place for your children? That's what involving Autistic people meaningfully in advocacy means. We're not in it for ourselves. We're in it to work toward a world where all Autistic people, children and adults, speaking and non-speaking, can live better, happier lives.

Why would you oppose that?

Wednesday, January 11, 2012

How to Support the New Thinking Person's Guide to Autism Book

The Thinking Person's Guide to Autism community is growing rapidly; it's no surprise we keep getting requests about how to support our new book. Thank you, community!

We appreciate every last effort to spread desperately needed positive, evidence-based autism information and advice via our book -- whether you buy a book for a neighbor, an autism grandparent, the family of a child with a new diagnosis, an adult friend who may find it insightful -- or buy a box of books to hand out at the next meeting you attend.

There are many ways to help get the word out about the TPGA book, several of which do not require spending money. Some ideas:
  • Post a review on Amazon.com. Tell the rest of the world why our book matters, and why it helps!
  • Ask your library to purchase a copy of the book. The more requests a library gets, the more likely they are to purchase it. And when that library buys the book you will have made it possible for hundreds of other people to access a one-stop handbook for excellent autism information.
  • Email your friends and family this sample PDF  and a link to a bookseller like Amazon (is.gd/TPGAonAmazon) or Createspace (is.gd/BuyTPGA) or Barnes & Noble (is.gd/TPGAonBN)
  • Donate a copy to your current or former pediatrician, because -- for so many of us -- how great would it have been to see this book on their shelf ten years ago?
  • Put a widget to purchase the book on your own blog or website. You can use the HTML we've provided.
  • Make a donation to our 501c3 so we can purchase books for libraries, schools, and doctors' offices.
  • Contact us about doing interviews, book readings, radio, and internet radio spots. We're pros. We're fun. We're informative
Profits from sales of the Thinking Person's Guide to Autism book go straight back to the community. We currently plan to donate proceeds towards "funding outstanding science" at the Autism Science Foundation, and investing in adult Autistics (whether that describes us now, or our children/clients in the future) via ASAN, the Autistic Self-Advocacy Network.

If you would like to fundraise for your own autism organization via TPGA book sales, contact us directly. If you have any other questions, leave a comment or email us at thinkingautism@gmail.com.

Thank you again for your support of Thinking Person's Guide to Autism.

           -The Editors
           Shannon, Jennifer, Liz, Emily, and Carol




Monday, January 9, 2012

Reflecting on My Future Self

Jennifer Byde Myers
www.jennyalice.com

Grocery shopping this morning,  a mom and her son passed by me in the floral department. She is probably in her 50's because her son looked about 10 years older than mine... and yes, her boy plays for our team: Autism. Right down to the 6 foot 2 inches of young man flapping his hands next to the strawberries and "oooo--Wheeeeing" in the dairy section. I could tell before the stims though, it's amazing how quickly I can spot a person with autism who's in the same part of the spectrum as Jack.

When I see another family with a special needs child, I always try to smile — at the child, or the parent, hopefully both, to show that, even though I don’t have a stamp on my forehead or my son in tow, I understand a little bit about their life. I always hope that a friendly smile will make a person feel there is more good than ill-will in this world. I know there are days when I just hope that we can get through one single transaction without a struggle, and knowing that there are compassionate strangers nearby can make all the difference for me. But she wouldn't make eye contact with me, or anyone else for that matter, except her son.

And while I thought it was precious that she spoke to him so clearly, looking directly into his face, in an undistracted and meaningful way, I also found it a little distressing to think that perhaps she has had to block the rest of us out. I felt compelled to go over to her, and make some benign comment about her shoes to initiate a conversation, just to make sure she knew that there are those of us out here, who would help if we could, and know a lot of resources, and could take the cart if things got a little hairy in the parking lot (even though her son was doing an awesome job). And, let’s face it, I just wanted to take care of her. Which made me feel a little like a creepy stalker, because maybe she just wasn’t that social in the first place. I think what I really wanted to know is this: will I become like her? and will Jack be like her son?

Will I be so over other people staring at us by then that I will stop bothering to make eye contact? Will I look a little more resigned, but braver just the same? Will I look that tired, which is even more tired than I look now? Will my shoulders be that hunched? Will I look like I *really* need a break?

and will my son be pushing the cart? Helping a bit, pausing for a little stim, then back to the cart, not running anyone over, not running off? Will Jack still be with me, daily, when he's 20? 30? (and will he be that handsome?)

Jack wears a size 8 shoe already (that's a 10 woman's shoe in case you need a little frame of reference.) He grows taller and stronger and more like a young man every day. It's getting harder to pretend that he is going to stay a little boy forever when you're shopping for shoes that big. And like so many parents, the future seems so far away right now.

photo courtesy of Moore & Warner
For awhile things were so hard I couldn't wait for Jack  to get older, and grow out of whatever those troubles were. Then he got older and surprise! that age had its own pile of troubles. And certainly we experienced a lot of joy in there too, but it always seemed like a better version of our family was just around the corner. I am trying to be more aware, and happy with exactly where I am at any given time, and now that we've gained some stability, I've been been neither looking back or looking forward. We've just sort of been living, and enjoying, which I think is okay as long as I get back to that planning for the future thing, fairly soon. Sniff some flowers, but stay on the trail. And I want to make sure there's a plan for me too; maintaining my friendships, increasing the vegetable intake, getting more sleep.  I don't really want to end up looking like that old red barn we pass on our way to the coast: confident, but beaten down, still in use but possibly not structurally sound anymore.

There are so many things to worry about, to obsess over, to wonder, and so much to do, all the time. That day, of course, I went to the grocery store without a shopping list, came home with eight bags of groceries, and still had no plan for dinner. So perhaps I’ll start with feeding my family before I move on to the rest of my life.

A version of this essay was previously published on Salon.com, on February 11, 2011.

Friday, January 6, 2012

Being the Change We Want

(Or, A Good Dose of Humility Never Hurts)

Kim Wombles
www.kwomblescountering.blogspot.com

I’ll have been involved in the online autism community for three years this March. I’d say the community has changed, but I’m thinking it’s more that I changed over the years. People still bicker about the same kinds of things (some of the people are the same ones who’ve been at it for years), and the divides seem to be more entrenched than ever before, if you go looking in those places. I try to avoid that, now.

Sometimes, when I make the round of blogs, of bloggers posting their deepest feelings, only to be roundly attacked by others, I want to respond, to get into the middle of things. Most of the time, though, now, I don’t. I shrug and move on. I ask myself first what possible good could come out of my investment.

It isn’t that my positions about autism have changed much. I still don’t think vaccines are implicated in autism. I still have a strong aversion to the use of untested and potentially dangerous treatments. I hate to see people throw away precious resources on woo when their efforts, time, and money could be better used. I’m still adamantly opposed to those charlatans who take advantage of parents who will do anything to help their children achieve their potential.

What has changed, though, is how I believe individuals should be approached, how situations should be addressed. Where I once found myself outraged, angered, frustrated and hell-bent on calling out the things I found horrible and the people doing those horrible things, I tread more lightly. I try to avoid being reactionary. Is it really horrible? Are they acting out of malice? Is there a better way to deal with the situation? Where possible, I think avoiding directly rebutting another person’s words and instead presenting the evidence against a treatment is better than directly addressing another person.

It took some hard knocks to come to that realization, but it’s one I’m working on doing. I don’t want what I do to be a reaction to other people. I want it to be proactive and compassionate. I’ve written over the last year about how I regret the way I first approached the vaccine wars. Almost without reservation, I am disappointed in myself over what can be perceived as attacking people personally.

Over this last year, my time as a hospice volunteer has taught me how to just be there for families undergoing the worst times in their lives; I’ve learned how to accept without judgment the way individuals face their challenges. Being in a position where that’s my primary role -- nonjudgmental support -- has made me more reflective of my actions and beliefs. We all do the best we can with what we’ve got. Some of us face the challenges more adaptively. Some of us don’t. Some of us are great at putting on a mask and hiding our agony. All of us deserve respect and compassion as we go through our lives.

And it’s those experiences, coupled with Kathleen’s and my work at the Autism Blog Directory, that have changed how I feel about people on other sides of the “divide.” It’s a divide if we let it be, if we think there’s only one right path, only one right way. I’m tired of the divides, of the us-versus-them approach.

One of the best things I did was get involved in my local community. It meant wading into the local Autism Speaks to do it -- and while I know intimately the objections many in the online world have towards the organization, working on the walk and meeting families who believe a whole host of things differently from me forced me to let go of anger at people who choose what I consider, based on the evidence, to be pseudoscience. I backed up and shut up. In most situations, people don’t need to be directly confronted on their choices; it won’t make them change in the direction the other person wants them to. It simply entrenches them and deprives both parties of a chance for support, for genuine friendship, for growth.

I still write evidence-based pieces, but I refuse to be reactionary towards others in the community. Attacking others just makes their lives all the more difficult, and I really don’t like the idea that I’ve made someone’s day harder, that I’ve hurt someone who was already struggling. Really, the thought that my words could have pushed people further to the edge, deeper into woo, made them more bitter, angrier people makes me ashamed to have written those words, and for those I harmed, I’m sorry.

That doesn’t mean I’ve gone all soft and mushy with no clear positions. There are some things I am certain are wrong. There are people in our online community who I believe do tremendous damage to others and who, I think, do so intentionally with the sole purpose of getting ahead. I think those people are in the minority, though, and most people are doing the best they can. I think there’s a respectful, appropriate way to counter the woo and those who peddle it, and I work harder now to find that way.

Countering, my blog, has absolutely changed in the last 34 months. I think it’s a change for the better, and I know that how I approach things, how I handle adversity will continue to evolve. Do I miss the chances at snark? A little bit, but it’s just not worth it if that snark hurts someone else. My kids are watching me, reading me, looking over my shoulder. They’re out there, interacting with the world, and if I want others to show them empathy, compassion, patience, and acceptance, then I must pave the way by being that kind of person. We must, I think, ultimately be the change we want to see.

Wednesday, January 4, 2012

How Autism Parents Can Listen to Self-Advocates

Shannon Des Roches Rosa
www.squidalicious.com

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.
-
Winston Churchill

You'd think we parents of kids with special needs -- righteous avengers that we so often are -- would be extra-invested in listening to the self-advocates who share our children's experiences, who in many cases used to be our children. You'd think someone like me, who truly believes behavior is communication, would take more time to understand why a self-advocate would criticize something I'd written, would ask for more information before reacting, would understand that a self-advocate can both be articulate and need communication accommodation. You'd think that, knowing how many times even well-meaning people have dismissed my son's needs or spoken to him as though he was an obedient puppy, I'd understand how self-advocates might have very little patience for parents who patronize or disregard them.

But, I often don't get it, as I am a neurotypical parent, not a self-advocate. And when I advocate for my eleven-year-old son, I sometimes overstep advocacy boundaries, or am blithely non-inclusive -- talking about "children with autism," for instance, when I really mean "people with autism."

If self-advocates let me know that my efforts are misguided, that is when I have a choice. I can react instantly and defend my intentions -- or I can take a step back, and try to understand why a self-advocate would take offense at something that I worked so hard on, and meant so well by. I can listen to what they are saying, rather than how they are saying it (not always easy). I can try to determine exactly what I have done that is hurtful, and ask how I can avoid doing it again. And I can remind myself that this process, this learning does not equal total and complete agreement (nor should it; if we are truly talking about a meeting of minds).

It's not easy. I am a defensive person, I have a hard time taking criticism. I also loathe conflict and want everyone to get along. Plus, I live on the Internet where instant reactions are not just possible but expected. So, instead of listening and acknowledging, instead of giving myself processing time, instead of asking questions -- I too often react on my terms. According to my expectations of civil disagreement, and my expectations of trying to understand each other's contexts.

Which is ironic, really, when you consider that I am most often engaging with Autistic self-advocates. Even those not terribly familiar with autism usually know the stereotypes of frankness, and of challenges with understanding perspectives not personally experienced. I should know that demanding diplomacy, and asking to understand each others' contexts is not exactly fair in a neurodiverse environment. As Nomatissima wrote in I’ve Earned My Anger: Policing and Dismissing Autistic Emotions:
The fact that my emotions are deemed “not appropriate” for the situation makes it all the more infuriating. It may not seem like a legitimate response to a neurotypical, but an autistic perspective is going to take certain things a lot more seriously, and will more rapidly notice when something isn’t right in a situation related to disablism. It’s not always going to be pretty, and we’re not always going to be able to sum it up in tidy little speeches. That’s okay. It should just show how committed we are to this, and what it means for us, how profoundly we care about this topic. It’s not a matter of weakness, lack of manners, or being “emotionally incontinent” (Nice imagery there, eh?)
The autism stereotypes I cited above are not universal among the diverse community of Autistic self-advocates, of course. Some folks with autism are fully committed to civil disagreement. Others have clarified that it is unfair for we who rely on the (problematic) concept of theory of mind -- on being able to anticipate how others might feel and how our actions would affect them -- to expect accommodation from Autistics. As spunkykitty wrote on Rachel Cohen-Rottenberg's Autism and Empathy project:
But is this Theory of Mind really so great to have? For what good purpose, if only to negotiate and manipulate? Frankly, I am tired of always trying to read other people’s minds and always bending over backwards and in every compromising position to try to be sensitive to other people’s feelings.
I am the opposite of not considerate and not empathic. I am self-destructively considerate and empathic -- but where has that landed me? I spend 80% of my emotional thought-life trying to figure out other people’s intentions and hidden meanings, and trying to be caring, loving, gentle, considerate. But I do not even command half as much space in their minds or hearts. Not even with their supposed adeptness at Theory of Mind would they bother to try to understand my feelings, my thoughts, and my desires. That is the truth. Painful? Yes, but truth is truth.
If we parents say that we want to have conversations with self-advocates, then we need to do the human thing, and truly listen, try to come into self-advocates' spaces, rather than always expecting them to come into ours. And then try to ask the right questions! As Lynne Soraya wrote about her fourth grade teacher, whose overzealous attempts at forced social inclusion made Lynne miserable, and who wished her teacher would have just asked her why she was rejecting her social overtures, or tried to understand why she was behaving the way she did:
My best teachers did ask why. Better yet, they often read between the lines and came up with the answers themselves. It's sad for me to see that despite all the education and awareness, so many have not learned to do the same. The unfortunate truth is that sometimes, what masquerades as compassion and empathy is really just judgment, in disguise.
It's hard for me not to get defensive when self-advocates are critical. Because I mean well! But why should self-advocates think I'm any different, if their experience has largely been that people in my position discount their experience, and if I'm still talking, not listening?

Some of the most difficult exchanges happen when self-advocates criticize parents, and parents respond that self-advocates are not like their kids and cannot speak for them. This make my conflict-averse head spin. Because here's the thing: on the small scale, the personal experiences within the disability community may differ, but on the larger scale, and in terms of advocacy needs, our kids and self-advocates have more in common than not. Making comparisons isn't helpful, not when both experiences are legitimate -- and especially when those comparisons are tangents, irrelevant to the argument that triggered them in the first place.

We parents like to think of ourselves as good people, and hopefully, mostly, we are. But do our actions back up those good intentions? We get filled with righteous indignation while watching movies about objectification by the dominant culture, films like Temple Grandin, Boys Don't Cry, or My Fair Lady. We are outraged by stories of middle school Aspergian torture. We believe, in our souls, that we would never behave so badly toward another human being. We believe that, were we ever in those situations, we would act differently. Right? Let's try to prove it.

Let's try to demonstrate that we are aware of our privilege as neurotypicals, of being outside the disability community. As was reinforced for me last August during BlogHer11's Immigration panel featuring Jose Antonio Vargas, when we're part of the dominant culture, we can't claim we aren't privileged. We are. And it doesn't matter that we didn't ask for the privilege -- we have to make choices about what to do with that privilege. And self-advocates do not have to be nice to us about it, though I think many have demonstrated exceptional patience with me.

Personally, I am trying to listen, really listen, to self-advocates like Corina Becker, who wrote in What I Want People to Know:
I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.
I know I'll fail a lot, probably badly. I know some self-advocates will be really honest with me when I fail. I know some self-advocates don't care what I do, as they're working on strengthening their own community, into which parents and caregivers do not factor.

I'll keep trying to listen, and trying to act accordingly, because I want the best life possible for my son and his community-mates of all ages. As Ari Ne'eman said at the 2011 Syracuse University Neurodiversity Symposium in regards to the parent and self-advocate communities,
At the end of the day, we want the same things. At the end of the day, we're hoping for the same better world. It's just that we who actually live this life, we who actually experience these challenges, are in a position to tell the world that there is not just one way to accomplish them.
At the end of my day, I want a world that treats my son with dignity and respect, takes him seriously, and gives him the accommodations he needs -- regardless of whether but especially if he asks for them -- without patronizing or infantilizing him. And if I of all people do not treat my son's possible future selves -- today's self-advocates -- the way I hope he will be treated, they way everyone deserves to be treated, the way no one should ever have to ask to be treated, then how could I ever demand anyone treat my son better?

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 A version of this essay was previously published at www.squidalicious.com