Friday, November 30, 2012

Congressional Autism Hearing Recap

The stated goals of yesterday's Congressional Oversight and Government Reform Full Committee Hearing: “1 in 88 Children:  A Look into the Federal Response to the Rising Rates of Autism” were to "...get a clearer picture on what is being done, what questions still need to be answered and what needs exist for those children, adults and families who live with an Autism Spectrum Disorder."

This hearing was notable for its precedent-setting inclusion of autistic representatives. Committee Chair Darrell Issa noted that as long as he heads the committee, it will stay open to autism concerns and may even try to find funding to address them. Video coverage of the entire hearing is embedded at the end of this post.

The hearing witnesses (and each's official testimony):
  • Alan Guttmacher, M.D. (testimony)
    • Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health
  • Coleen Boyle, Ph.D. (testimony)
    • Director of the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
  • Mr. Bob Wright (testimony)
    • Co-Founder, Autism Speaks
  • Mr. Scott Badesch (testimony)
    • President, Autism Society
  • Mr. Mark Blaxill (testimony)
    • Board Member, SafeMinds
  • Mr. Bradley McGarry (testimony)
    • Coordinator of the Asperger Initiative at Mercyhurst, Mercyhurst University
  • Mr. Michael John Carley (testimony)
    • Executive Director, Global and Regional Asperger Syndrome Partnership
  • Mr. Ari Ne'eman (testimony)
    • President, Autistic Self Advocacy Network
During the first part of the hearing, outgoing Rep. Dan Burton let thoroughly debunked mercury-autism and vaccine-autism causation pseudoscience theories fly, despite CDC representative Coleen Boyle's calm reiteration of actual autism facts and figures, and reminders that the CDC's 1 in 88 autism numbers point to underdiagnosis of existing autism numbers rather than a rise in autism rates. Several congressional committee members could have benefitted from reading TPGA's Mission Statement's primer on critical autism thinking & pseudoscience checklist before the hearing.

In the second part of the hearing, testimony was more varied:
  • Autism Speaks co-founder Bob Wright described his eleven year old autistic grandson Christian's regressive autism as being "...this pit. We lost a little boy we knew. It wasn't like he was a disabled person who got more disabled," and described the CDC as a passive organization. 
  • The Autism Society's Scott Badesch was interested in finding better supports and services for autistic people like his own 25-year-old son, as well as appropriate education and job opportunities, working with the CDC, and reaching out to under-served populations -- on having government services be "outcome based." 
  • Mark Blaxill from SafeMinds ably demonstrated confirmation bias, in calling autistic children "sick," making accusations of "malfeasance," flogging debunked mercury/vaccine-causation, and denying CDC evidence of autism underdiagnosis by testifying under oath that "...before 1930, the rate of autism in the world and in America was effectively zero" -- when this is true only in that the label "autism" did not exist at that time. 
  • Bradley McGarry talked about Mercyhurst University's Asperger's Initiative's work on building a foundation of self-advocacy, social skills, and academic progress -- and the need for more internships and job coaching. He describes the under-education and underemployment of autistic people as both unnecessary and "critically unfair."
  • Michael John Carley of GRASP forcibly disagreed with previous talk about a health crisis, averring that we are in a "services crisis." He talked about the need to focus on "where our greatest need lies ... in the present" rather than research, which focuses on the future. He said that most autism families do not have the proper ", interventions, and educations available to their children," and described autistic adults as "starved for housing, therapies, and employment opportunities." He emphasized the need to understand "the fiscal cost of not providing services." He also pleaded with those listening to remember that most autistic people can "read what's being written about them, and hear what's being said about them." As he said this, many audience members shook their heads in disagreement. We recommend they read TPGA's essay on The Least Dangerous Assumption.
  • The following is an excerpt from ASAN's Ari Ne'eman's official testimony. He decried the damaging rhetoric of an autism "epidemic," and focused on AAC, services, evidence-based approaches to demonstrating that autistics have always been with us, and civil rights. Mr. Ne'eman was given further opportunity to expand upon income, gender, racial and language barriers with respect to autism and disability by Rep. Davis during the second panel's Q&A session.
    "Chairman Issa, Ranking Member Cummings and esteemed members of the Committee, thank you for the invitation to speak to you today on federal policy regarding the autism spectrum. My name is Ari Ne’eman and I represent the Autistic Self Advocacy Network (ASAN), the leading national advocacy organization run by and for Autistic adults speaking for ourselves. As an Autistic person, I want to begin by thanking the committee in particular for hearing from self-advocates – that is not always a given in the autism world and I am profoundly grateful to both the majority and minority members and staff for ensuring that we are represented at this hearing about us.

    "Over the last decade, we have seen growing public attention towards the autism spectrum, in part driven by rising rates of diagnosis. Although additional public attention has provided an opportunity for greater visibility to the idea of autism, such visibility historically has not translated into attention or resources on the issues that matter most to Autistic people and our families.

    "There are a variety of reasons for this – one of the most prominent of which is the history of under-representation of adults on the autism spectrum in policy conversations about us. Additionally, one of the most important things to remember in discussing federal policy regarding autism is that the vast majority of publicly financed resources that those of us on the autism spectrum interact with carry the word disability rather than the word autism. As a result, my testimony will touch on both federal policy that is specific to autism as well as general disability policy issues, such as Medicaid, that significantly impact Autistic people and our families.

    "First, the majority of federal attention focused on autism in particular comes in the form of research funding. While we have been pleased to see an increase in federal autism research dollars over the course of the past decade, it is very important that we evaluate how we are spending that money. I am a big believer in the old maxim, “In God we trust, everyone else please bring data,” so let’s turn to the data and see what it shows us.

    "Of the approximately $217 million dollars that the National Institutes of Health (NIH) invested in autism research in 2010 (the most recent year for which data is available), only a meager 2.45% went towards improving the quality of services and supports available to Autistic people and our families. Only 1.5% went towards research that addresses the needs of Autistic adults. When compared to research on questions of causation, etiology and biology and diagnosis, the percentage of the autism research agenda focused on the actual needs of Autistic people in order to improve their quality of life is miniscule. We are pro-research, but the research agenda must be re-balanced to incorporate both causation and quality of life.

    "This matters. It matters more than I can possibly articulate, but I will try to do so, nonetheless. I remember recently visiting a service provider in Manhattan earlier this year to learn more about how we can improve disability employment outcomes for people with severe disabilities. While I was there, a non-speaking Autistic man in his mid-20s came in with his father. They were looking for some help trying to find him a job or at least something meaningful to do with his day. I asked him some questions and his father helped give responses, but it was immediately clear that his son knew exactly what I was saying, he pointed out what he was interested in, he shook his head at what he had no interest in, he raised his hands when he was excited. He had plenty to say and clearly rarely got the opportunity. I think about that young man – who probably wasn’t that much older or younger than me – often, and particularly at times like this.

    "Members of the Committee: Why can’t we do better for him? Why can’t we give him a chance to communicate more clearly, to not only sit here and testify before Congress someday but also be able to tell his supporters and friends what he wants for his life, to tell his parents that he loves them and how important they are in his life? Some people say that until we unravel the causation of autism, that is impossible. That is quite simply not the case -- Augmentative and Alternative Communication technology has existed for many years now and can empower even those of us who cannot speak to make their voices heard.
    "If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today. I am not here today to speak for every Autistic person – that’s impossible. What I am here for is to argue for every Autistic person to have the same opportunity to communicate that I have come to enjoy thanks to the support that I have been lucky enough to receive in my life."

November 29 Congressional Autism Hearing Video:

Additional hearing coverage and insights (will update as new posts pop up):
If you missed sending in your concerns to the committee beforehand, or if you have additional input for them, please note that you can still send your comments and concerns to the committee via online fax (sincere thanks to Matt Carey for the link).

Wednesday, November 28, 2012

Disobedience or Disability? An Essay on Sensory Processing

Tony and Mary Brandenburg

Taking a shower feels like needles stabbing my head!

The sound of that fan is making my ears hurt.

I feel like I’m suffocating when you hug me.

Image source:
Maurice Sendak, who wrote and illustrated Where the Wild Things Are, was amazingly astute in his observation of children for a person who had none of his own. During his acceptance speech for the Caldecott Medal in 1964 Sendak stated that:
"… from their earliest years children live on familiar terms with disrupting emotions, fear and anxiety are an intrinsic part of their everyday lives, they continually cope with frustrations as best they can. And it is through fantasy that children achieve catharsis. It is the best means they have for taming Wild Things."
When an outsider is simply observing a child’s public behavior -- especially the challenging ones -- it may be difficult for the observer to separate the behavior from the child. It may also be difficult for the observer to see the behavior as a desperate attempt by the child to communicate or cope, and thus it may also be difficult for an observer to step outside of their own world view to see the entire picture -- including underlying influences that may have set things in motion. How much easier it is to blame the child, or the child’s parents for spoiling and not disciplining the child? To parent the right way, or the way the observer believes is the right way?

When the casual observer is given a badge of authority, such as observing from the position of educator, those casual observations are given more clout. In the worst scenarios, schools can pin more damning labels onto a child, such as oppositional defiant disorder, or conduct disorder. They often do so without properly assessing a child for underlying issues, including neurological differences -- instead basing decisions on overt behaviors. The result is that instead of supporting the child, the outside focus is on taming the child. Like Max’s mother from Where the Wild Things Are withholding her son's dinner, educators may use the quickest fixes they have in their toolboxes: the withholding of recess, social opportunities, or desirable activities.

What is Sensory Processing Disorder?

Our sensory systems are responsible for detecting sights, sounds, smell, tastes, temperatures, pain, and the position and movements of the body. Sensory integration occurs automatically for most people, and requires minimal effort.

For some children, however, the sensory system does not interpret the message the way that others do. In the most extreme of situations it can become like an onslaught of information which is impossible to interpret. It could be that the individual has a Sensory Processing Disorder (SPD), which is a neurological condition that results from the brain's inability to integrate certain information received from the body's sensory systems.

Children who have SPD, exhibit challenges in how they interpret and respond to sensory input, often leading to learning and behavioral differences.

Sensory Processing Disorder is a hidden disability. It is referred to as that because it is not observable to the casual eye of parents or teachers. Because SPD is not a visible disability, the child may be treated unfairly for behaviors associated with it -- observers assume any associated disruptions are intentional. In fact, many of these behaviors are an effort by the child to regulate their nervous system, which may be on overload.

Children with Sensory Processing challenges may react to sensory input in a number of ways that catch parents and teachers off guard. Some behaviors the children may display involve self regulation, including fidgeting, impulsivity, difficulty with transitions, modulating emotions, avoidance, extreme sensitivities, maintaining an upright position, crashing into things (often interpreted as clumsiness or intentional indifference) -- which often results in difficulty interacting with peers.

Prior to assuming these are simply behavior problems, and dealing with them via a behavioral approach, it may be helpful to consider other factors. Many of these outbursts are acts of self-advocacy. The role of adults and teachers in these situations is to choose between calm assessment of situations, or making complete disasters of them.

If a child is seen as demonstrating avoidance, or as being uncooperative, this identifies the child as disruptive. Poor body awareness can be interpreted as intentions of aggression, and can result in labels which imply intention or purpose (“he meant to do that”), social isolation, and poor self concept.

Responding to Sensory Processing Disorder

For a person with sensory defensiveness, environmental stimuli can be perceived as an attack, or sensory assault, which is every bit as debilitating as more visible forms of disability. Reactions can be as passive as shutting down/avoidance, or as intense as a full-blown defensive attack on the environment and the people within it. As a response to input, the sympathetic nervous system switches on, and goes into a more primitive protective reaction, “fight or flight.” This type of response is commonly found in children with sensory processing challenges, whose nervous systems may switch into and out of fight/flight mode throughout the day. 

Though rarely viewed as such, fight-or-flight can manifest as self-protection in the form of hitting, kicking, or pushing as a response to situations such as standing in noisy crowds and lines. It is rarely seen as self-advocacy, however, and children with SPD are often seen as the aggressors -- again, treating the symptoms and the child as the same thing, in this case, as being naughty.

Keeping in mind that children may not possess the communication tools to relate their experiences,  fight-or-flight is a responsive “tool” they have to advocate for themselves. It is critical for adults to recognize the communicative intent of these tools. It should be no surprise that for a child with SPD, standing in line, walking through crowded hallways, or even walking around on a busy playground can be unnerving experiences, sometimes resulting in responses that can be misinterpreted as “bad behavior.”

Living With Sensory Processing Disorder

As a family, we have lived with sensory processing challenges for many years. Like others, we didn’t recognize its effects until its manifestations were too obvious to ignore, or to attribute to developmental inexperience. Our youngest child showed many of the more disruptive responses of SPD. Prior to being petitioned out of his 2nd grade classroom, our son’s nervous system was switching to fight/flight throughout the school day as a response to the many complex classroom noises, classroom overcrowding, unexpected touch from unknown individuals, and being handed stacks of meaningless and pointless tasks involving paper/pencil work which caused him physical pain. Rather than allowing him to avoid (flight) by retreating under a desk, he was physically restrained and removed from the classroom -- at the request of other parents and the principal -- for years. Ultimately, he was blamed and punished with what amounted to expulsion due to his alternate  response -- the only one he had left -- fight.

Now, consider the rationale of a seasoned educator placing a child with sensory processing challenges, including personal space and coordination issues, right in the middle of a group of 20-plus seven year olds, on the floor. A misjudged movement where an elbow bumps another child’s nose, a child prone to nose bleeds already -- can be immediately interpreted as intentional when the children who, lacking the specifics of communication refer to a bump as “hitting” which should come as no real surprise. But in Sierra Madre, California, where we live, when that child in question has already been labeled a “threat” -- such a minor incident can end up reported to the police as an assault with the result being that the child is segregated and removed from his educational setting.

We wonder how many children with SPD and their parents have faced the stares, and glares, from people watching these children whose nervous systems are on overload ... simply assuming that these children are manipulative brats, and that their parents are completely ineffective and useless role models. We ask, how many people watching such children in crisis have offered words of support and encouragement, a helping hand, or an understanding smile?

We wonder how many have instead have stood by in judgment, or spread their misguided perceptions to others in the form of hateful gossip -- perpetuating the belief that these outbursts are due to these children being "bad" or "naughty," or that they require special "handlers" to control them? How many have assumed that these children should be physically restrained during overload, regardless of tactile or other sensory aversions?

One day at our son’s school while he was in crisis, a parent leader stood sentry -- watching our son through a window. She clearly expected the worst of him, and he obliged her narrow-minded view by behaving as she expected. Instead of treating this child with respect, or even better, offering a helping hand, she devalued this child’s humanity by asking whoever was nearby, “So, who do you think will pay for the damage?”

Who pays for the damage?

Well, technically we all do. We pay for the damage in a number of ways. It’s paid for in terms of money -- in the form of lawsuits against the school districts for their failure to provide appropriate supports; the teachers do, in the form of stress and lost trust; and all of the families do, in the form of toxic living and learning environments.

Who pays for the damage? Ultimately, it is the children who pay. All of them. They pay for the ignorance of their elders to recognize that there is more to our world than test scores and achievement gaps. They pay with our common humanity because they have been taught to build up walls and borders to keep people who do not look or act the same in some other place. A world that says, "This is mine, and that is yours."


Maybe in your world, but not in ours.

Monday, November 26, 2012

To a Parent in a Parking Lot

Meg Evans

I met you last weekend when I was leaving a crowded shopping center. Your son, who might have been about ten years old, suddenly did a cartwheel in front of me while I was walking to my car. You took hold of your son’s hand and then glanced toward me and apologized by saying, “He’s retarded, sorry.”

I didn’t say anything to you before you went on your way. No doubt your attention was focused on keeping your son safe, and rightly so. You wouldn’t have wanted a nosy stranger to lecture you on how your son might feel about your choice of words. Indeed, you probably believed that your apology was the best way to protect your son’s feelings, by letting me know that there was a reason for his behavior. I’m sure there must have been many times when ignorant, judgmental people yelled at your son and got him upset. You’re quite right that your son doesn’t deserve to be abused like that by strangers, and I understand that you were trying to help him by making sure I didn’t jump to conclusions about him.

One little sentence -- just three words. It’s easier than getting into a long conversation about the details of your son’s diagnosis. Maybe you feel that random people in a parking lot have no right to expect you to share personal information. As to that, I don’t disagree. Besides, you wouldn’t have had time to get into a conversation about it, even if you wanted to, because you were so busy making sure your son didn’t get run over. I understand that, too.

Your son didn’t look bothered by the language you used to describe him. Maybe you think it’s harmless because he doesn’t understand what it means. Or you’ve decided that even if he understands, it’s what our society is going to call him anyway, so he may as well get used to it. Why sugar-coat the inevitable? If you use the word in everyday conversation, then it may lose its sting and become just another part of the background of your son’s life. To the extent that your assumptions about what your son can expect from our society may be correct, I can’t fault your logic.

And that, I believe, is the crux of the controversy we have seen about neurodiversity in recent years.  It’s not that anyone vehemently objects on principle to the idea of social equality and respect for their children and for others who have developmental disabilities. Rather, it’s that many parents simply can’t fathom how our society could ever get there from here.

If I had said anything to you, in that parking lot, about the possibility that your language might harm your son’s self-esteem and his potential for future accomplishment, you’d probably have told me that I was both rude and clueless. After all, you’ve been working as hard as you can, all these years, to keep your son safe from harm and to teach him the daily living skills he’ll need as an adult in a group home. Nobody has done more for your son than you have, fighting with school officials and insurance company bureaucrats to get whatever scraps of services are available. So far, those services don’t come close to what your son would need to hold a job and live independently. You can’t foresee that situation ever changing for the better. In the wake of the Great Recession, you’re just grateful that there is still a roof over your family’s heads and food on the table.

I didn’t write this article with the expectation of changing your views. Realistically, there is very little chance you might read it. And even if you did, I suppose you’d just tell me to quit being the language police, when you have more serious things to worry about. I’m not inclined to dispute that point, in light of all the struggle and stress faced by today’s families. So I’ll ask no more of you than that, if you should happen to come across this article, I hope you’ll take it as it’s intended -- not as a criticism of your approach to raising your son, but as a respectful observation that our world sometimes changes in ways not foreseen.


I have always believed in the power of stories to shape the future.  In that spirit, I’ve composed a vignette describing another parking lot encounter, which takes place in the year 2025. This time it’s a little girl at the shopping center with her mother. Nine years old, with a freckled face and long blonde pigtails, she smiles often but can speak only a few words. She dearly loves both gymnastics and playing outdoors. It’s a beautiful sunny afternoon, with a cool breeze blowing and a few tiny puffy clouds dancing across the brilliant autumn sky. Overcome by the keen joy of the moment, the little girl spontaneously does a handspring right there in the parking lot. She doesn’t notice how close she comes to colliding with a passing shopper, a middle-aged lady who blinks in surprise behind her bifocals.

The child’s mother takes her hand and is about to apologize. Before Mom has time to say anything, however, the lady smiles at the little girl and compliments her for doing such a good handspring.  Then she turns to the mother and says, “What a lovely daughter you have!”

Mom says thank you for the kind words and continues walking to her car with her daughter. Once safely buckled in, the little girl starts typing busily away on a tablet that has a text-to-speech app installed. Her spelling and vocabulary are still very much a work in progress, and often she gets a word wrong; but today has been such a good day that she doesn’t feel frustrated because of it.

All the way home, the back seat overflows with happy, electronically-generated chatter. As best Mom can figure it out, it’s about gymnastics, and the cute puppy in the pet shop window, and gymnastics, and the nice lady in the parking lot, and gymnastics, and last week’s field trip to the nature preserve -- and of course, gymnastics. Mom responds with an occasional “Wow!” and “That’s great!” when she can get a word in.

Truth be told, Mom isn’t paying as much attention as her daughter believes she is. Her thoughts are still on a news article she read earlier that day. For the first time since records have been kept, most adults with developmental disabilities have jobs and are living independently. The government official who was interviewed for the article gave many reasons -- advances in assistive technology, improved educational methods and therapies, better availability of health care, expanded community services and supports, a booming economy with many new jobs to fill, and diversity programs aimed at countering prejudice and hiring more workers with disabilities.  But above all, the official said, it was because our society finally found the collective will to do what was needed.

She has been quiet too long, her thoughts filled with the myriad possibilities that the future may hold. Her daughter just turned up the volume on the tablet (having discovered the uses of that feature last month) and “MOM!” blares from the back seat.

“Yes, I’m listening,” she says. The light changes to green, and she accelerates away from the intersection. Tall maple trees on both sides of the boulevard are ablaze with late-fall colors. Some of the trees have dropped almost all of their leaves; these stand in clear silhouette against a backdrop of pure blue sky, with the shape of every branch and twig revealed.

She speaks again, as much to herself as to her daughter.  “The world is listening too.”

Friday, November 23, 2012

Autism & Gut Inflammation Research: Wakefield's Taint Persists

Emily Willingham

Stomach Endoscopy. Source: Wikimedia Commons
Are autism, gut inflammation, and immune issues linked? One recent sponsored supplement published in the journal Pediatrics argues that they are. There’s certainly some evidence, although quite mixed, hinting at a link between immune or gut issues and a subset of people with autism, although which one triggers the other is nowhere near resolved. What one might hope is resolved is that it’s difficult to construct solid scientific arguments on a shaky foundation that incorporates retracted papers.

Th Pediatrics GI-autism supplement reflects information derived from a symposium conducted in 2009, one convened to talk about GI problems and autism. The authors are recognizable as those whose interest has very much been focused on autism as inflammation, particularly gut inflammation. The problem has been pinning down specifically what that inflammation might be and where it occurs. To demonstrate that such evidence has been identified, the authors write:
Endoscopic analyses of children with ASD and GI symptoms have revealed the presence of a subtle, diffuse inflammation of the intestinal tract (reviewed in refs 9 and 25). Characterizing the nature of this inflammation remains an area in need of further investigation to fully understand and to provide further evidence of its relationship to GI symptoms in individuals with ASDs.
I’ve followed the studies on GI and autism, in part out of curiosity and in part out of a confirmation bias because our autistic son had gut problems early on (that he no longer has) while our youngest, non-autistic son has persistent GI complaints. My general impression has been that data confirm some heightened gut issues related to constipation and anxiety, although one large, 30-year study found no link at all between GI disease and autism. Some research suggests autism-specific pathways involved in children who do have GI problems. But results from study to study are mixed and yield a fuzzy picture. Even the data on the microbiome -- the microbial inhabitants of the intestinal tract whose identity and numbers can influence health -- are in conflict, as they are for whether or not specific autistic behaviors or severity can indicate underlying GI problems.

Indeed, study findings show a huge variation in percentages of autistic people with reported GI problems and how they compare to those without autism, as this graph illustrates. Of course, each study given in that graph had a different population with different numbers and probably variable versions of autism, so no one can say firmly what the frequency of GI problems really is among autistic people.

One impression I had, though, is that there’s a dearth in the scientific findings of intestinal clinical signs, such as from endoscopy, in autistic people, which has made it rather difficult to establish any definitive link. Some clinical findings point to esophageal dysfunction: one study found more reflux in autistic children, another identified a rare esophogeal disorder associated with three cases of autism, and yet another found esophageal dysfunction in girls and women with Rett syndrome, a genetic form of autism. Another option for explaining at least some GI problems in autism is a non-infectious, non-inflammatory cause linked to misfires of the enteric nervous system, the ‘little brain’ that resides in your abdomen as a multiplex of nerves that indeed sometimes seem to have a mind of their own. But confirmatory endoscopic evidence for the lower gut is scant, as far as I knew. So when I read that above quote about endoscopic analyses showing a “subtle, diffuse inflammation” in the intestinal tract, my first thought was, “Eh?” It’s a compelling and confident statement of a link between gut inflammation and autism, but what is the evidence?

So, I looked at references 9 and 25, cited in the quote above. As the parenthetical says, they are reviews. Reference 9 is a consensus statement published in Pediatrics in 2010. I searched it for mentions of inflammation and endoscopy. First, I note that it says the following about GI disorders and autism:

The existence of a gastrointestinal disturbance specific to persons with ASDs (eg, “autistic enterocolitis”) has not been established

The panel concluded that evidence-based recommendations are not yet available. The consensus expert opinion of the panel was that individuals with ASDs deserve the same thoroughness and standard of care in the diagnostic workup and treatment of gastrointestinal concerns as should occur for patients without ASDs.

Referencing the findings of gut inflammation, this 2010 review says:

Researchers in a number of laboratories have described intestinal inflammatory changes in individuals with ASDs

and cites three references, 59, 60, and 61.

Note that this consensus statement was published just before The Lancet retracted the infamous 1998 Wakefield et al. paper that set off the whole treacherous distraction of “vaccines cause autism.” In fact, it cites that paper, although discussing it with a critical eye.

Curious about references 59, 60, and 61 embedded in the 2010 Pediatrics consensus paper, I first checked Reference 59.Here it is.

The senior author on this paper is one Andrew J. Wakefield. The report appeared in 2003, years before the 2010 retraction of Wakefield’s now-notorious 1998 paper. Reference 59 relies on the 1998 retracted paper, citing it four times, and cites another retracted Wakefield research article eight times.

What about Reference 60? It’s a review, also published in 2003. It depends so heavily on the retracted 1998 Wakefield paper that it cites it 10 times and cites another retracted Wakefield paper from the year 2000 twice.

So, on to Reference 61. It’s an original research paper from 2004. This 2004 article features Paul Ashwood, who makes co-appearances with Wakefield in other publications, including as first author on Reference 59, above. Reference 61 cites a retracted Wakefield paper from 2000, its first-listed reference, four times. Three Reference 61 authors were also authors on both the 1998 and 2000 retracted publications.

That’s the end of the references in this review, one of two cited in the 2012 Pediatrics supplement as evidence of clinical findings of “diffuse inflammation” in the GI tracts of autistic children. So far, one of the two references given to support clinical evidence of diffuse gut inflammation in autistic children sources three references that rely in part or considerably on retracted papers, and none of the sources notes the retractions or contains an erratum.

The second citation for clinical signs of inflammation from the 2012 Pediatrics supplement on GI and autism? Reference 25. That paper is a chapter in a book that was published in 2010, and the chapter cites and discusses extensively and without critique the retracted Wakefield paper from the year 2000. The lead author on this chapter is Paul Ashwood, who also is an author on this latest 2012 Pediatrics supplement.

In the end, those two reviews that the 2012 Pediatrics supplement cites to support “diffuse inflammation” trace back to only two relevant original research papers, both of which contain several references to retracted Wakefield papers, and one of which has Wakefield as senior author. These two original articles are a legitimate part of the literature; they have not been retracted. Yet even though they rely on retracted publications for rationales, context, and even methods, not one of them appears to contain a note or erratum. Retracted papers should be treated in the scientific literature as though they no longer exist, except as cautionary tales. What would these two original research articles or the cited reviews look like if all references and text related to these “non-existent” papers were removed?

For what are probably obvious reasons, the authors of the 2012 Pediatrics supplement sidestepped using the name “Wakefield” in their reference list by citing for their endoscopic evidence reviews that in turn cited Wakefield and other papers. But that confident statement about endoscopic evidence of intestinal inflammation is based on publications that carry a certain air of fragility thanks to reliance on references that, in the understanding of scientific retraction, should simply no longer exist. And I find that less than compelling.

This article was published under a different title at

Wednesday, November 21, 2012

Speak Out: Congressional Autism Hearing Nov 29

The U.S. House of Representatives' Oversight and Government Reform Committee is planning a November 29 meeting on "rising autism rates and the federal government's response." From The (via Left Brain/Right Brain):
The panel, chaired by Rep. Darrell Issa (R-Calif.), has invited witnesses from the National Institutes of Health and the Centers for Disease Control and Prevention, as well as Autism Speaks and other advocacy groups.

Autism rates are rising quickly. One in 88 children has been diagnosed with autism spectrum disorder (ASD) by age 8, the CDC reported in March, a dramatic increase from its previous estimates.

The Oversight Committee's witness invitations say the Nov. 29 hearing "will address the federal response to the recent rise in ASD diagnoses, as well as the allocation of government resources for ASD. It will also review research and treatment options for those diagnosed with ASDs."
We at TPGA are concerned that no autistic-run organizations have been invited to the meeting as of this writing. We are also concerned about the track record of such congressional hearings: they have been used in the past to promote harmful misinformation about autism, and one of the past and current committee members is Rep. Dan Burton, who still firmly believes his grandchild's autism was caused by vaccines.

We're asking you to take action, to speak out in support of autistic children and adults and government actions that will benefit them. Please see today's Left Brain/Right Brain post on the hearing for additional information and talking points.

If you can get to the meeting in person, we highly recommend you do so. But if you cannot, you can use the form linked below to send a fax directly to the committee.
Fax the Committee for the upcoming autism hearing on Capital Hill Directly
Faxes sent from this form will look like this:

If you would rather see if your representative is on the committee and then contact them directly -- either by phone or by online form -- this site makes it simple to do so:
Contact Committee members directly
You can also send a letter directly to your own representative, whether they are on the committee or not, using this form:

If you want to speak out in person, join The Autistic Self Advocacy Network (ASAN) in protesting the lack of autistic representation at that day's congressional autism hearing by "rallying at the Rayburn House Office starting at 11:00 am. Gather together outside Room 2154!"
If you can't be there in person, please sign ASAN's petition for the hearing to include testimony from autistic people:

We'll leave you with a sample letter from autistic self-advocate and autism parent Carol Greenburg, and hope it will inspire you to act:
Dear Committee on Oversight and Government Reform

I understand that the committee is planning a meeting for November 29, which is too soon for many of those of us on the autism spectrum to arrange to attend and make our own voices heard on matters that directly affect our daily lives.

With respect, I must note that previous meetings on this subject have not only excluded autistics, which is in and of itself an unfortunate precedent, but have focused on now debunked pseudo-scientific musings on the alleged connection between autism and vaccination.

As an autistic and as the mother of an autistic, I feel an urgent need to help correct the errors of the past with my own testimony, and the testimony of other autistics, if not in person, then otherwise entered into the record of this meeting, as it seems unlikely that autistics' needs will be accurately conveyed without input from autistics themselves.

With sincere concern,

Carol Greenburg

With thanks to Matt Carey, Emily Willingham, and Jennifer Myers. -SR

Updated 11/23 to include ASAN info. -SR

Monday, November 19, 2012

Shameful - A Film about Autism in France


Alex Plank and NoahTrevino are wrapping up editing on a documentary film entitled "Shameful", which reveals the negative treatment and educational neglect of autistic youth in France, and the dramatic effect it has on those families. They traveled throughout France for over a month interviewing parents and meeting young autistic children in their homes, capturing the frustration, and angst of caretakers as they try to navigate a system that both blames the presence of autism on parents, and neglects to provide any educational structure for the children. I spoke with them several weeks ago.

What led you to the Project?

We heard about the issues in France through a conversation and thought that the topic would be a good fit for documentary. We had heard about “packing” [a controversial treatment where children are wrapped in wet sheets for hours at a time, which is often repeated over the course of years.] which came out of Bruno Bettelheim’s theory of “refrigerator mothers.” And we had heard that the main “treatment” for autism in France was psychoanalysis.

How is psychoanalysis being used in treatment?

"Treatment" is not the right term, because it makes it sound like it is something legitimate. These people don't seem to see a difference between autism and psychosis; they believe that Autism is a psychosis. You don’t have to have any license or degree, you just need to get into a group [of thought, e.g. Freud, Lacan] with other psychoanalysts and you can have an operating practice and say you are a psychoanalyst. It is completely unregulated. 

They are telling mothers and fathers that it is their fault, and parents are clearly not happy. These psychoanalysts have many competing theories which include absurd things, like the positions, about the way the parents had sex (during conception). And almost anything they say will contradict the next thing they say. [the version of psychoanalysis that is most prevalent in France is the post-Freudian school associated with Jacques Lacan. The underlying notions are that autism and other mental health problems are caused by a disturbance in the child's relationship with their mothers, or by “maternal madness.” These theories have been rejected the world over in the last twenty years.]

Who is the main focus of your film?

We mostly met with autistic children and their parents. The youngest child was probably six. There were a few teenagers, then all ages in between. More than half of the trip we spent staying with these families. So we got to live with them for the night, and not just stay for an interview.

That was where we kept hearing them say they were ashamed of their country because of how autistics are treated. That notion of shame coming from people who have such a national pride was really big. The fact of the matter is that there are people there in France now that are not proud of their country at all. And the fact that they were willing to let foreign people stay in their home shows how much they feel, and that they want to talk about this.

Tell me more about what goes on? If I am a parent, and I notice that my child is having some struggles in school, or has a language, a sensory processing issue?

The school or the pediatrician won’t even give the right diagnosis; they wouldn’t say ‘autism’. The children are seen as having a psychosis, and the parents must pull them out of school. It is ingrained that way in their education system. Then the children are sent to psychiatric hospitals called Hôpital du Jour, where there is no educational component at all-- not a good place. There is nothing attractive about a hospital in which children are being tortured. They are sent to these asylums and the parents are told that everything is their fault, and the whole family goes to therapy twice a week forever. 

[Children identified before the age of six, unless parents have private access to other professionals, go to a centralized medical center CAMSP (Centre d'Action Médico-Social Précoce), and are given perhaps one short session a week with a generalist who has no specific autism information. Speech therapy is not offered to non-verbal children. After the age of six, but sometimes sooner, children are placed at these Hôpitals du Jour. For children with more significant intellectual disability there are full time asylum placements. Information (in French) here.]

Do children with other disabilities go to school? Kids with cerebral palsy, for example?

I don’t think so-- by law they are supposed to, but the laws aren’t enforced. School officials make up reasons why the children can’t be there, like safety reasons. Autism France did a survey that said that 80% of autistic children do not attend school.

Did you speak with any autistic adults who have suffered through this life?

We didn’t see any autistic adults because they are probably institutionalized. They are probably in these hospitals. And there is no way to get into these government-run facilities. In general there's no educational placement for these adults either, and if their parents or family aren’t around, there is really no other place for them to go.

Was there a difference between urban and rural settings? Was there a difference between families that had money and those that did not?

We saw no difference between urban and suburban, and we were all over France. Actually a lot of these centers are in the more suburban areas, cities that border Paris. Parents would say things like, “In a place like Paris, you would think that there would be more ways, more places to get services.” But there really isn’t. There are only a small number schools that any of these children could go to, and they are all full, and the waiting lists are very long.

The parents are sending their kids to Belgium if they have any sense of what should be done to give their kids opportunities. There were 5000 kids who went to Belgium according to one news article [video (in French) here]. The families that are sending their children don’t necessarily have more money, but they do speak English so they have better information.
The French government will pay for the school in Belgium, and they pay for individual taxis to take the children there. Because of this, many families have moved to the north of France to be closer. It has become an industry of sorts in Belgium.

And at least in Belgium there is an educational setting during the day, unlike the psychiatric hospitals in France, but if they stay at school, they don’t sleep on the campus. They are still sent to those types of hospitals at night. And there are all of the rumors of doctors giving medication, or changing medications or dosages with out first speaking with parents and getting consent.

It seems like there is sort of a financial or political machine behind all of this.

Yes, there is definitely a financial component to it, but the biggest part of it is the culture, and I don’t think this is a European culture issue, it is a French culture issue. Even when the Minister of Health put out a statement saying that they did not recommend packing as a form of intervention, the psychoanalysts went on record saying that recommendations do not need to be followed.

And it is fashionable to go to a psychoanalyst; politicians go, people in news go. The government is paying the bill for the families to go to the psychoanalyst, but the child is only really being observed, and the parents are being blamed, and no one is getting any help.

Parents are worried. They just want to make a better environment for their children to grow in, they are just trying to get basic support for their children. And we heard the story over and over again of families where the father can only work part time, and the mother can only work part time, or not at all, so they can care for their child. There are stories too of social services taking the child away, we heard that, and without giving too much of the movie away, one woman talked about children being taken away.

Is your movie a documentary, an expose? A narrative?

All of those things, of course, but mainly a documentary. We didn’t take a point of view, but the families we interviewed, they have a point of view. The title Shameful, we just kept hearing people use the word “ashamed” and “shameful.” We just want to get the discussion started, educate people, and start the dialogue.

There was another documentary out last year, le Mur by Sophie Robert that followed two autistic children. Were you inspired by that movie?

Not really, it was actually coincidental timing. Just as we were discussing the idea, the court case happened. [Three of the psychoanalysts whom Ms. Robert interviewed for the film sued her, claiming she misrepresented them.] It actually worked out because more people were becoming active, and it brought more parents together to protest.

Did you wish there was something you could do in the moment?

We were moving pretty quickly, and I don’t think there was time for it to set in. It was all coming at us so fast. I think it all takes a bit of processing to go through.

And now as we are editing we are there all over again. When we were there people were giving us rough translation of the main stories, but we didn't have transcripts of exactly what they were saying for months, so we really didn’t even have the whole picture. The translation as we were going was really just an approximation by the person who was helping us. When they say something is “lost in translation”, it’s really even more true with such sensitive issues. Now we are hearing even more.

Where are you in the process now? When can we expect to see the film?

We’ll be entering the film in festivals. Then we’re hoping it gets some interest and will be shown in theatres worldwide. We just hope to educate people enough to start a discussion. We just want to show what these autistic children and their families have gone through.

Do you feel like you are changed people from having witnessed the lives of these families?

Noah: I was raised by a single mother, so I have that whole experience growing up, and seeing how hard she worked, and how hard it was to make ends meet, and her that way I do relate to their stories.

Alex: Yes. It definitely changed me. Going into it you have these ideas, you think "Oh it's a sad thing," but really witnessing it first hand, talking to these families I don't even think I can really describe the effect it had on me. I had no idea that children could be treated that way, that they could just be taken away from their families like that.

For more information please visit


Friday, November 16, 2012

Total Customer Service Fail: One Autistic's Story

Have you ever been in a customer service situation in which your or your child's need for accommodation was either ignored or dismissed? We suspect Jaden's story is far from uncommon. This needs to change. 


I have autism. Since my diagnosis at age 25 I've never been shy about this. After never understanding why I've had trouble with so many simple things my whole life, I absolutely love that I have the answer now. It's been six years since my diagnosis, and it still blows my mind every day to realize it. I never use it as an excuse for bad behavior, but simply as an explanation if I need more time or help with something.

Many years back, I signed up with AT&T for an iPhone. I do not use phones if I can avoid it. My girlfriend and I had a home phone if it was ever needed, but we both communicate almost exclusively via email or text messaging. I picked an iPhone because it gave me access to the Internet. It was the first phone I saw that did so without altering my online experience significantly. Also, it had access to apps that I could use to keep track of things I have problems with.

When I signed up, I asked AT&T if I could get a plan with no voice access (only data and texting). They said this didn't exist. After a week of looking around on the Internet, I found that such a plan did exist, and I'd only need a doctors note to get it. It's designed for Deaf customers, but applies to anyone with an appropriate disability. I printed out the form from the AT&T website, took it to my doctor, and faxed it back to the company. Within a day, I was on a disability plan. This plan consisted of unlimited texting and unlimited data for $50 a month. Everything was great, other than the fact that no one at the store even knew this plan existed.

Six months later, my girlfriend decided that she wanted an iPhone as well. She's undiagnosed (and probably has autism), but without a diagnosis we knew she couldn't get the same plan as me. We signed up for a Family plan, but the person at the store told us that I couldn't keep my plan. He also said there was only one Family plan we could get, since we both wanted iPhones. Both of these things were not true. (I suspect, at this point, that the employee just wanted a higher commission.) We were put on plan where we both had unlimited everything (including voice). This plan cost more than $200 per month.

Due to how trusting I can be, it took six months for my brain to realize that this plan couldn't be right. I emailed the AT&T support staff and got no reply, meaning I had to call them. I learned that the agent who set us up with the Family plan had given us misinformation, and that we could in fact drop to a lower tier of minutes. And I was again told that Family plans can't have a disabled plan on them. We dropped to 500 minutes and let things be for a while. I was told we could not get a refund on the difference in plan prices, even though we never called anyone in those six months, and even though the staff member gave us the wrong information. I was told we waited too long to call them.

A few months later, I found a phone number for a call center AT&T has for disabled customers. Once I called, I found out I could have my disability plan back on the Family plan, but there was a new issue. AT&T charges a higher fee for the main line, then $10 for each additional line on a family plan. If I were to register my main number as the disability line, it would be made the additional line, and I would only get a $5 discount for not having a voice line. I told them that this is not an acceptable discount for not having a voice line and said I needed time to process the situation. I was told that if I wanted to put it back, just to call and it could be done -- that they had my documentation on file.

I decided not to go back on the plan because the discount wasn't sufficient. Instead, we cancelled our home phone and went with only the cell phones.

Some time later, the two of us moved an hour away to attend a new college. When we arrived at our new apartment, we learned that we had no signal on our phones indoors and barely any signal outside. It would take as many as ten tries to send a text message. When I called AT&T, they said they would inspect the towers. Nothing improved for weeks. Finally, they said we could pay $200 (out of our pockets) to get a repeater and improve the signal. It wasn't their problem, we were told. I asked if that voids our contract, and they said it didn't since we could get a signal on campus. Defeated, I just dealt with it.

The final straw was our unlimited data plan. AT&T phased out their unlimited data plan and had been trying to get their existing users to switch to a tiered service instead. I finally decided to return to my Disabled plan and split our Family plan into separate plans to get a reasonable price on it. The first problem is that AT&T, when told of what I wanted, said I never had a Disabled plan before and they had no documentation saying I could get one. Thankfully, I still had the original paperwork and faxed it in to them. I received no apology for being called a liar about it. Once the plans were split (and we couldn't change our minds), we were told that my girlfriend could not keep her unlimited data plan and would be required to pick a tier for service. I could keep mine, but that created a new crisis.

Earlier this year, the two of us drove from Oklahoma to New York to interview at a grad school we were interested in. I am very dependent on my GPS to know where I'm going, so I have a very complex app that helps me. We used this GPS to make the 29 hour drive and to get around town once we were near the college during the week we were gone. In the process of pulling all these maps and pinpointing our location, I went over the arbitrary 2GB cap AT&T recently added to my unlimited data plan. Their response was to throttle the speed of my service to the point that it was unusable. I was not able to use my GPS, which is a daily necessity for me. Thankfully, the cap was hit right as we reentered our home town, but we still drove in circles for an extra hour before we found our way home.

I called AT&T the next day and was told there was nothing they could do. I had places I needed to go the following day, but couldn't without my GPS. I emailed AT&T and got back blank replies (which I have learned closes the case on their end). Finally, I got an employee on the phone who told me I did have one option: If I switched to a tiered data plan, it would unthrottle me immediately and I could continue using data at a regular rate for the rest of the month, but that I could never switch back to unlimited. After some thought on the issue, I switched. I could not miss the appointments I had the following day and was made to believe I had no other option.

But the speed never improved. A week went by and I was still throttled. I missed the appointments since my GPS still wouldn't work. I emailed AT&T and got back 11 blank replies. I called and was transferred from department to department. I had two separate panic attacks due to the run around. I finally got a manager and was told that even though they didn't keep their part of the deal, I couldn't switch back to my unlimited plan and there was nothing that could be done for me.

After days of being bullied by their phone reps and ignored by their email support, I reached my breaking point. I cancelled my AT&T account. I was then hit with almost $300 in fees for breaking the contract.

I'd had enough of talking to them, as they just talk me down or in circles, and I couldn't take any more panic attacks. I had an advocate call on my behalf. She was able to get the manager to admit that AT&T handled things improperly, but that the ETF could not be waived. The manager offered the largest credit she could give without being fired, but that was all that could be done. Now, due to AT&T's bullying, I have a $220 bill to deal with that I'll likely not ever be able to pay.

AT&T failed at so many points in this process. I gave them so many times to try and improve how things were being handled, but they just never acted on them. I alerted every rep I ever dealt with that I was autistic and may have difficulty speaking on the phone and understanding them. Most were polite about it, but some were downright upset that they had to put extra effort into things. AT&T apparently does no training with their associates when it comes to dealing with disabled customers. This is even worse with their email support team, which can close out a case by replying with either a blank email or one that says they'll look into it, then never have to reply again. Many things need to be changed here.

In my experience, AT&T is just not friendly toward the disabled.

Wednesday, November 14, 2012

Talking About Autism, Disability, & Hygiene

Shannon Des Roches Rosa

Most parents fret about their kids' hygiene and how it is affected by factors like circumcision, tooth brushing, or toilet training. Said fretting escalates when the kids in question have a disability, but hygiene doesn't have to be the skunk cabbage in the parenting bouquet -- not if parents do their best to understand why hygiene can be complicated, take cues from self-advocates with insights parents and professionals cannot provide, encourage self-care, recognize that not all hygiene needs will be rooted in disability, and help make self-care part of a routine.

Circumcision is a standby topic in parenting circles. Arguments both for and against the snip invoke culture, religion, sensation retention, or wanting Daddy to have a penis twin. But few mention the possibility of conditions like cerebral palsy or the fine motor challenges that often accompany autism, and how those affect uncircumcised penis care.

I certainly didn't dwell on disability when I was pregnant, so parents-to-be should consider this: some boys don't have the fine motor skills to retract their foreskins, while others lack the motivation for proper penis care. Some parents might have preferred, in hindsight, for their boys to be streamlined -- not only to simplify hygiene for the rest of their lives, but also because of Janice Joplin's blissful mantra, "If it feels good, do it." It is so tempting and so easy to pull on a foreskin from the outside of one's pants! Who can blame a kid for taking advantage of such an opportunity? And who outside our community of parents, peers, educators, and self-advocates won't judge them for doing so in public?

It's fun to pepper a post with the word 'penis,' but I have to admit that dental hygiene is a far greater concern than circumcision in most parenting circles. Advice from self-advocates and professionals is usually sound: Talk to the dentist beforehand, see if they'll let your child come in during slower times and tour the office. Have your child practice sitting in the chair. Have them watch another child's dental exam. Don't force them. Use social stories about going to the dentist. Get specialized toothbrushes.

This advice has stuck for many quirky kids I know; their attitudes towards dental hygiene are now indistinguishable from the typical little shirkers who avoid toothbrushing because it's a chore and chores suck, and who can be convinced to tolerate dentist visits.

But some kids with special needs will not submit to the dental care they need, despite their parents' efforts to reassure or accommodate them. They may improve like my son Leo, who now lets us brush and floss his teeth, and whose fear of the dentist used to result in screams as soon as he walked through her office door -- but who, through years of practice and patience on both his part and his dentist's will now sit in the unpredictable up-and-down chair, has developed enough muscle control to keep his mouth open for almost a minute, and will usually allow the dentist to probe his mouth with her fingers. He's never tolerated any other dental procedures, not even the lightest of cleanings. We've been lucky; he has what his dentist calls "strong healthy horse teeth."

Still, his dentist wants him to have periodic full dental exams, with x-rays, cleaning, and teeth sealing. Since he can't sit still for these procedures and would likely find them terrifying, we have no choice but to put him under general anesthesia so his dentist can give him a thorough dental evaluation plus the treatments kids are supposed to get every six months.

Leo's dental needs are not uncommon or even particularly intensive compared to some of his friends, who have oral sensitivities and dental care aversions so pronounced their families use anesthesiologists twice each year to get their son's teeth the care they need, including lots of sealing. Despite being medically necessary, such "voluntary sedations" are often not covered by insurance, have to be scheduled well in advance for limited time slots, require several hours without food (so fun with perpetually hungry boys), and have to be cancelled if the child has been unwell during the previous two weeks. But it's either that, or no dental care at all except fluoridated water.

Still, dental care is not parents' number one hygiene concern -- they tend to expend far more mental energy on toilet training. Parents want children to achieve as much autonomy as possible, and do their best to support them thoroughly. Yet the path to children's toileting success is not always intuitive for parents who do not have a disability or who are not autistic themselves.

Sometimes there are obvious physical hurdles to self-toileting, as with cerebral palsy or other motor conditions. Sometimes the barriers are less apparent, and require a willingness to decipher seemingly illogical behaviors -- as when children with autism engage in toileting noncompliance for sensory reasons. What if the thought of sitting over a toilet's enormous bowl filled you with existential horror? What if you lacked the verbal skills to express your fears, and could only scream and lunge for the door each time an adult tried to coax your exposed bottom atop the dreaded porcelain void? What if you thought it felt great to sit on a big warm poo? What would be your motivation for using the toilet then? What if your body wasn't yet able to tell your brain when it was time to urinate or defecate? What would be the point of trying to toilet train a child in any of these scenarios, without first understanding why they were resisting?

Experts and ideas about toilet training kids with autism and other disabilities abound. I recommend sticking to plans with thorough readiness evaluations, plentiful ideas for keeping children engaged and motivated, and gentle reminders that the process could take months, or even years. Parents who have been coached to be attentive, informed, and realistic while helping their child learn toileting hygiene can hopefully avoid discouragement (an attitude children will likely sense). If you're having trouble persevering with your child's toileting, be sure to reach out for advice and support.

Since kids with disabilities can need more support than their typical peers, parents need to be cautious about unwittingly undermining self-care abilities. Parents should evaluate for and encourage any and all self-care skills within their children's abilities, such as bathing, wearing deodorant, toileting/wiping/flushing, managing menstruation, and understanding the steps required to wash hair. In cases where some physical or verbal support is needed, parents need to be extra-careful about resisting the urge to take over hygiene tasks for expediency's sake. The folks at say that "95% of [Down syndrome] teenagers can brush their own hair but only 45% actually do so each day. This suggests that parents still find it quicker and easier to brush their teenager's hair for them..." Parents have to be ever watchful for those sweet spots where kids' abilities not only need but thrive on cultivation, and let them grow.

If kids push back about hygiene matters -- refusing to shower or use deodorant or Clearasil because they have no interest in what others think of them, needing reminders about toilet flushing, and openly discussing wearing pullups at night with classmates -- then parents need to tread carefully, and decide which battles are worth the effort. This is also an area in which consulting with willing self-advocates can be invaluable, because there may be additional considerations parents might not grok. A self-advocate friend recently recommended that we install a mirror to help my visually-oriented son see whether he'd lathered or rinsed his hair properly. I would never have thought of that mirror on my own.

Parents also need to remember that kids' hygiene needs aren't always subject to special needs complications -- they can result from typical development, too. A friend once had to laugh after a nurse informed her that her son's adaptive equipment-based skin infection was actually typical adolescent acne. She came in expecting antibiotics or another medical approach, but her son needed  benzoyl peroxide, not a prescription. Not in that case, anyhow.

What else can parents do to help kids master hygiene self-care, besides letting them know that they're backed by full support and faith? One option is attaching tasks to a simple visual or written schedule, and so making them part of a routine. For kids who bristle at such obvious supports, consider apps like Epic Win, which transforms to-do lists into a role-playing game. Most critically, remain open to insights not only from parents and professionals but from the people with insiders' perspectives on these matters -- willing self-advocates. It's all part of supporting kids in what they usually want as much as parents do: achieving an appropriate level of hygiene independence.


A version of this essay was previously published at

Monday, November 12, 2012

Autism and the New DSM-5 Criteria: Who Will Be Left Behind?

Emily Willingham

When news broke that the autism spectrum categories of Asperger’s disorder and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) would get subsumed into the wider maw of a general “autism disorder,” people worried. They worried about autistic people who are quite verbal or who have typical cognitive skills. What would happen to individuals whose autism doesn’t manifest in those terms as profound? The biggest concern was a new category for the Diagnostic and Statistical Manual of Mental Disorders (DSM)-5, social communication disorder. Would people like my son, diagnosed with Asperger’s and whose autism includes echolalia, anxiety, motor deficits, repetitive behaviors, learning differences, and other features well beyond the social, get rolled into what looks like a flimsy, catchall not-safety net of “social communication disorders”? And what other kind of communication is there if not social?

Based on early reports, the concerns were legit. One alarming presentation at a January 2012 conference in Iceland claimed that only 45% of people diagnosed with Asperger’s disorder or PDD-NOS would retain an autism spectrum diagnosis under the new guidelines. Those findings were preliminary and controversial, but further worrisome conference reports trickled in, all suggesting that the new autism diagnostic criteria proposed for the DSM-5 would exclude a good-sized percentage of people currently diagnosed on the autism spectrum.

Then a peer-reviewed version of the study presented in Iceland emerged in March 2012 suggesting that the new criteria would be pretty good at excluding appropriately people who aren’t on the autism spectrum but have limited ability to capture people who are. According to that study, the autistic people who would be overlooked under the new guidelines happen to be those without intellectual disability and who would fit the current criteria for Asperger’s disorder or PDD-NOS. People like my son.

Each of these studies had some limitation -- the choice of population, not originally designed to evaluate DSM-5 criteria -- that made their conclusions wiggly. Now there’s a new study out, one packed with data, focused on three clinical populations with different features, assessing how well the new criteria compare to the old in capturing autistic people and excluding the non-autistic. The headlines promise us that we will see “less impact” with the new definition or that the proposed guidelines “won’t miss autism cases” much more than the old ones. That, of course, begs the question of why we’d need to change the criteria at all.

But a review of the paper (abstract here) calls into question blithe assurances that people who might fit current Asperger’s and PDD-NOS diagnoses have nothing to worry about. What the authors really found was that the new criteria could end up excluding about 1 out of 10 children who meet the existing criteria for spectrum disorders. Given the oft-trumpeted 1 in 88 with autism in the United States, that rate of exclusion of people who should be included translates into a tens of thousands of individuals. And let’s not forget that the existing criteria, according to this study, correctly identify those who have autism at a higher rate than the proposed criteria do.

Where the old and new might distinctively part ways is in how well they exclude people who don’t have autism from receiving an autism diagnosis. The old criteria don’t do this as well, although how well depends on the specific population and diagnosis. From where I’m sitting, it looks like we’re making an untenable bargain: missing out on more people who have autism to avoid misdiagnosing people as having it when they don’t. The people we miss will live with an unrecognized disability that interventions and supports could help, and the people diagnosed with it who don’t have it will receive therapies that may or may not help them. Is no better option available? I think there is.

In their discussion, the authors make the following worrisome and strange observation:
Given concerns that the restricted and repetitive behavior requirement might lead to reduced identification of children previously diagnosed with ASDs under DSM-IV and possible misclassification as social communication disorder, we examined why some children with PDDs did not meet the DSM-5 criteria. In all three groups, most children who did not meet the criteria did so because they did not demonstrate the required impairments in social and communication functioning, and not because they did not meet the restricted and repetitive behavior criteria. In fact, few children did not meet the restricted and repetitive behavior requirement in DSM-5. These results suggest that few children with ASDs are likely to be misclassified as having social communication disorder and lend further support to the addition of the restricted and repetitive behavior criterion.
If I’m reading that reticulated verbiage correctly -- and I tried it before, during, and after coffee -- some children who had pervasive developmental disorders failed to meet the new DSM-5 criteria for autism because they did not have the “required impairments in social communication and functioning.” Yet they tended to meet the repetitive and restrictive behavior criteria, which was unexpected following a report finding the contrary. It’s been my experience that those behaviors themselves can impair social communication function, so it’s difficult for me to see how a clinician draws a clean line between, say, “repetitive questioning or extreme distress at small changes” (under repetitive/restrictive behavior) and “difficulties adjusting behavior to suit different social contexts” (social communication). And what happens to children–this study did not address autistic adults–who slip through a diagnostic crack because of this failure to meet the social communication criterion?

As it turns out, that particular category of symptoms continues to be the most problematic among the new criteria. The authors say that the results “revealed potential challenges in the interpretation of DSM-5 criterion A3.” If you read “criterion A3,” you can see why:
Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people.
That’s so open to interpretation as to be irrelevant.

I talked to a clinical expert about it. Deborah Budding, neuropsychologist and supervising faculty at Harbor-UCLA Medical Center’s Neuropsychology training program, in addition to being in private practice, wrote to me that this finding also increases concerns that the criteria addressing language and communication will still exclude specific groups, such as the most superficially verbally adept on the spectrum, like my compulsively verbalizing son. The social communication section requires that all criteria be met, she said, and “this will essentially exclude people with superficially ‘good’ language -- large vocabularies and oromotor skills allowing intelligibility -- who nevertheless struggle to actually use language effectively to communicate.” What she references there is pragmatic language, the ability to use those big vocabularies as a tool to communicate with others. From our experience, the big vocabulary words get a lot of play because they’re fun to say, over and over again, not for the meaning they carry.

Girls are a particular concern. They may form a fairly large hidden corner of the autism spectrum, obscured by social communication functions normed to a male population but diminished in their functional capacities among other girls. Girls who are officially diagnosed as autistic tend to have more intense manifestations, possibly because those less intensely affected don’t ping the clinical radar. This latest study involved children who were on the radar, and the girls it assessed could well be a selected subpopulation of the most severely affected. This selection would have flattened any sex-based distinctions that might have emerged about how effective the new criteria would be at diagnosing females.

The authors themselves recognize some of the failings of the criteria, noting that “there is much room for improvement with respect to specificity,” the accurate exclusion of people who do not have autism. But, they say, the stated goal of the DSM-5 committee was to do a better job of separating autism spectrum disorders from non-spectrum disorders, which they list as “language disorders, intellectual disability, attention deficit hyperactivity disorder, and anxiety disorder.” Was a loss of more autistic people to an accurate diagnosis the marching companion of that goal?

The thing is, the newly proposed criteria do contain one requirement that, I think, should outshine and outscore all categorization or labels. Holding to this single requirement could resolve this endless dilution of the validity of psychiatric labels, which get no help from now-you-see-it-now-you-don’t diagnoses like Asperger’s. It’s the fourth item they list, and it reads as follows, simply: “Symptoms together limit and impair everyday functioning.”

And I close with this question: If we identify symptoms that are limiting to everyday functioning, why do we even have to slot them into a label? Labels for syndromes have current uses, such as obtaining services or insurance payments, but wouldn’t symptoms that negatively affect everyday function serve the same purpose? Among other things, addressing specific symptoms for mitigation instead of slapping on labels could reduce the stigma that some labels carry. We all have gaps that need mitigating. If we addressed specific gaps instead of wholesale labels, we’d all overlap with each other in some way, for anxiety, attention deficits, compulsive or obsessive or impulsive behaviors, depression, mania, intellectual disability or learning differences in specific areas, or addiction–and it would be a lot harder to stigmatize what we have in common, regardless of our overall neurobiology. Furthermore, we wouldn’t have to worry about applying lists of criteria that result in the wrong labels or therapies for the wrong people, or–worse in my mind–overlooking entirely the people who need help and support.


This essay was originally published at