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Autism as a superpower: empowering or diminishing?

Not one but two new TV shows both explore the possibilities of kids who have autism — as well as seemingly magical powers. A great article over at io9.com poses a great question: “Why do we want autistic kids to have superpowers?”

Touch (FOX) stars Kiefer Sutherland as a dad whose son, Jake (David Mazouz) can see the invisible “energy connections” between humans, and where they are broken. This allows him to predict future events, which his father intervenes in as it’s apparently his “destiny.” Jake is the narrator of the series, but his voice is only inside his head — he never speaks aloud.

Alphas (Syfy) is a show about a group of extraordinary people who use their superpowers to stop other, evil Alphas from committing crimes. So…exactly like X-Men. Ryan Cartwright play Gary, who similar to Jake, is obsessed with cell phones. (Unlike Jake, Gary speaks.) Gay sees wireless communication signals and can process information as fast as a computer.

Both shows are beautifully shot, feature the talents of renowned actors and have compelling story lines. So what if they both happen to portray people with autism as possessing superpowers?

Mostly, it’s that autism is real and superpowers are not.

The article points out that characters like Gary and Jake add to the long-held autistic stereotype of Dustin Hoffman in Rain Man — the autistic character as the “noble savage” in popular culture, explains Steve Silberman, who is writing a book about autism to be published in 2013. Silberman explains that these are

characters that were significantly disabled in a social sense, but who had a kind of innocence and purity that enabled them to play their central role in the narrative: that of redeeming the hero, who wasn’t disabled and was only temporarily an outcast. Those characters usually faded offscreen when the hero attained his rightfully high status in society; they were only valuable for what they could render unto the mainstream characters — very much like the gay “best friend” in a million TV shows who coaches the female lead on her romantic problems but never has a sex life of his own (“gross!”), or the fat girl who’s “like a sister” to the geeky-but-hot male lead.

Silberman goes on to say that the stereotype, like most stereotypes “does an injustice to most people in the stereotyped category — what if you can’t calculate prime numbers in your head, and instead face poverty because many firms don’t want to hire even skilled employees who aren’t good at navigating social hierarchies?”

Maybe the biggest problem? People with autism were not consulted in the creation of these characters, who are played by neurotypical actors. How is that so different from asking actors to play characters of different cultures and races, about which they have only the most vague knowledge?

Seeing old movies of actors in blackface and yellowface seems embarrassing and archaic. It’s shocking that the mainstream public ever found such offensive portrayals acceptable, let alone entertaining. Jake and Gary aren’t exactly offensive, but nor are they realistic.

At the end of the day, real people with autism don’t need superpowers to be unique, amazing humans who are just fine the way they are.

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On Monday, we discussed the proposed redefinition of autism spectrum disorder in the DSM-V. Since then, we’ve heard from a lot you about what this could mean for yourself and your loved ones. Not surprisingly for the autism community, opinions vary widely.

Yesterday, we heard four opinions opposed to the redefinition of autism: a person with Asperger’s, a non-profit organization, a parent of a teen on the spectrum and a politician. Today, we’ll hear four other opinions in favor of  – or at least not pessimistic about — the redefinition: a parent-anthropologist, a nurse-researcher, a parent blogger and a clinical researcher.

If you’re just catching up, according to The New York Times, the new diagnostic criteria would likely have the following effects:

• About 25 percent of those identified with classic autism in 1993 would no longer be considered autistic.
• About 75 percent of those with Asperger’s would no longer be diagnosed.
• 85 percent of those with P.D.D.-N.O.S. would no longer be diagnosed.

Roy Richard Grinker: ‘understanding autism as one condition that runs along a spectrum’
The Parent-Anthropologist

Dr. Grinker is a professor of anthropology at George Washington University and the parent of a daughter on the autism spectrum. He is the author of Unstrange Minds: Remapping the World of Autism. This is excerpted from an op-ed that originally appeared in The New York Times.

Careful study of people with Asperger’s has demonstrated that the diagnosis is misleading and invalid, and there are clear benefits to understanding autism as one condition that runs along a spectrum.

When the American Psychiatric Association first recognized Asperger’s disorder in 1994, it was thought to be a subtype of autism. As the diagnosis became more common, it broadened the public understanding of autism as a spectrum. It helped previously undiagnosed adults to understand their years of feeling unconnected to others, but without bestowing what was considered the stigma of autism. And it helped educators justify providing services for children who, in the past, might have been unappreciated or even bullied because of their differences, but received no help from teachers.

But a culturally meaningful distinction isn’t always a scientifically valid one. Almost everyone with Asperger’s also fits the profile of the more classic autistic disorder. Indeed, in the current diagnostic manual, a child who has good language acquisition and intelligence qualifies as autistic if, in addition to having restricted interests and problems with social interactions, he has just one of the following symptoms, which are common among children with Asperger’s: difficulty conversing, an inability to engage in make-believe play or repetitive or unusual use of language. Even the best available diagnostic instruments cannot clearly distinguish between Asperger’s and autistic disorder.

People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high functioning.” Likewise, people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.

Moreover, large epidemiological studies have demonstrated that mild symptoms of autism are common in the general population. In particular, scientists have found that family members of a child with autism often exhibit isolated autistic traits. With autism, as with many medical diagnoses — like hypertension and obesity — the boundary lines are drawn as much by culture as by nature. Dividing up the workings of the mind is not as neat and orderly as categorizing species.

The proposed new diagnostic criteria, by describing severity and functioning along a single continuum, would also capture the often unpredictable changes among children with autism. When Isabel was 3, she had all the symptoms of autistic disorder, but if she walked into a doctor’s office today as a new patient — a chatty, quirky high school senior — she would more likely be given a diagnosis of Asperger’s disorder. Narrow diagnostic categories do not help us understand the way a person will develop over time.

We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. “My name is Isabel,” she said, “and my strength is that I have autism.”

Jennifer A. Pinto-Martin: Appropriate Services, Targeted Research
The Medical Researcher

Jennifer A Pinto-Martin, PhD, MPH is the Viola MacInnes/Independence professor and chair of Biobehavioral Health Sciences at the University of Pennsylvania’s School of Nursing. She is also the director of the university’s Center for Autism and Developmental Disabilities Research and Epidemiology. This is an excerpt from a piece that appeared on CNN.com.

One positive outcome of revising the criteria could be an impetus for the development of more targeted services and therapies that can better serve the needs of children across the autism spectrum. For children with Asperger’s syndrome, this might include therapy directed at improving their social interactions and daily living skills. For those with a more severe form of autistic disorder, it could mean therapy for management of problematic behaviors.

Insurance companies will be motivated to reimburse for therapy that can demonstrate improvement in functioning, and a more targeted approach has a better chance of achieving this goal.

From the perspective of medical research, the change in criteria is both good and bad. The search for the cause of autism has been hampered by the current one-size-fits all definition. Many researchers believe that the various subtypes of autism may well have differing causes. By narrowing the diagnostic criteria, researchers can sort those with the disorder with great clarity and consistency of symptoms…. On the other hand, monitoring changes in the prevalence of autism over time — an important, ongoing research initiative — will be hampered.

The broad definition of autism in the earlier version of the Diagnostic and Statistical Manual of Mental Disorders led to an increase in diagnoses. The subtleties of how labeling can contribute to a dramatic rise in prevalence were mostly lost in translation by the media and the take-home message was that we were witnessing an autism epidemic.

Stuart Duncan: ‘Your child will remain diagnosed. There will be no worldwide conscription enacted to recall all autistics for a new diagnosis.’
The Parent

Stuart Duncan, a well-known dad on the blogosphere, writes at Autism from a Father’s Point of View and on Twitter as @autismfather. The following is excerpted from an incredibly cogent reaction to the outcry on Google+.

Your child will remain diagnosed. There will be no worldwide conscription enacted to recall all autistics for a new diagnosis. Your child may no longer be PDD-NOS or Asperger’s but they will still be on the Autism Spectrum.

The services you have will be maintained, you won’t just up and lose them however, it is as yet unclear how you will have to go about getting new services. Either you’ll be given services based on the diagnosis you have already, or you will need a reassessment. It is not yet clear if there will be a standard set to account for this or if it will be up to each clinic/doctor or what.

Not autistic enough

The last paragraph in the article states this:

Dr. Lord said that the study numbers are probably exaggerated because the research team relied on old data, collected by doctors who were not aware of what kinds of behaviors the proposed definition requires. “It’s not that the behaviors didn’t exist, but that they weren’t even asking about them — they wouldn’t show up at all in the data,” Dr. Lord said.

Essentially what they are saying is that these doctors used the DSM-5 critera and made a new diagnosis based on paper work from 1993. Not the actual people… but the reports that the doctors made.

1994 was when the DSM-IV was put in place and that is when Asperger’s was added into the spectrum.

In 1993, those doctors did not look for the behaviors or signs associated with Asperger’s when making an Autism diagnosis… therefore, those behaviors and signs were not in the reports.

Therefore, a doctor in 2012 making an #Autism diagnosis based on reports from 1993 will find no signs of Asperger’s or Autism. The criteria were just too different.

This will greatly affect the numbers that they are reporting in this article.

That’s not to say that this accounts for every single person. There may still be some from 1993 that do not fit into the new DSM-5 criteria.

The epidemic

From the article:

“The proposed changes would put an end to the autism epidemic,” said Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of the new analysis. “We would nip it in the bud — think of it that way.”

Some people will see this as “massaging the numbers” or a way to make diagnostic cuts just to make the population happy and further dismiss the toxins argument.

But as I’ve just proven… the “end to the autism epidemic” numbers aren’t going to be as great as they’re trying to make them out. Comparing today’s criteria to reports pre-dating Asperger’s being in the spectrum simply won’t work and so, this is in no way a “nip in the bud” of the epidemic.

Also, many doctors do feel that some of those people aren’t as in need of services as many others on the spectrum may be… the whole idea that “someone needs it more than you” type of thing where doctors again wish that they didn’t make the spectrum quite so wide.

So in a sense, yes… they’re trying to squash the epidemic talk. But in another sense, they’re trying to undo a mistake that they felt they made with the DSM-IV. Read more.

Nestor Lopez-Duran: ‘Thoughts on clinical unity’
The Clinical Researcher

This balanced view on clinical implications of the redefinition is excerpted from the original post at Child-Psych.org.

I interact weekly with graduate students who are learning how to conduct neuropsychological evaluations for children and adolescents. Often these students have already developed a schema, or prototype, of the child or adolescent with Asperger’s. They would describe such a child as someone who has intense and unusual interests, maybe superior skills in some area such as music or art, rigidity in behaviors and interests, and social and communication ‘deficits’ leading to difficulties interacting and relating to others. The problems begin when we start seeing actual assessment cases. For example, recently a doctoral intern and I sat in supervision to discuss a case of a teenage boy who could be described as having a “perfect” Asperger’s profile, fitting both the student’s schema and the DSM-IV criteria; except for one thing: the client had a documented history of language delays. There was no question about the diagnosis: If the teen had a history of “language delays’ the diagnosis is autism. My student then asked me, so if this is HFA, how does Asperger’s look like? I replied, just like this.

Therefore, in clinical settings, HFA and Aspeger’s disorder look mostly identical, assuming the clinician follows DSM guidelines. But the most important question is whether the current diagnostic difference is clinically useful.  When debating the Autism vs. Asperger’s diagnostic question, I have always asked my students and supervisors whether the diagnostic difference would change anything regarding our approach to the case. This is the most critical question: would our recommendations or conclusions change based on the final diagnosis that we provide (autism vs. Asperger’s)? The answer is usually, if not always, no. Given identical clinical profiles, the recommendation for treatment, school accommodations, parental interventions, and so forth, would be the same for two adolescents who only differ on the presence or absence of language delays in early childhood. The provision of a diagnosis of autism vs. Asperger’s may lead to different political/personal/social consequences, but clinically, the current DSM-IV distinction between these two conditions, and the research that has come out of this distinction, has not informed or improved our clinical practice (e.g., selection of treatment, assessment, prognosis, etc). This is likely one of the main reasons that led the DSM committee to suggest the merger of Asperger’s and Autism.

Photo by Liz West

On Monday, we discussed the proposed redefinition of autism spectrum disorder in the DSM-V.

According to the most recent projections for the new diagnosis:

• About 25 percent of those identified with classic autism in 1993 would no longer be considered autistic.
• About 75 percent of those with Asperger’s would no longer be diagnosed.
• 85 percent of those with P.D.D.-N.O.S. would no longer be diagnosed.

Since then, we’ve heard from a lot you about what this could mean for yourself and your loved ones. Not surprisingly for the autism community, opinions vary widely.

In this post, we’ll take a look at a few comments from those opposed to the revision, including a person who is currently diagnosed as having Asperger’s, a politician, an organization and a parent. (In the next post, we’ll review the opinions of those who are more optimistic about the revision.)

AspergerSadie: ‘Give people services to help them get better at life’
The Individual

By now, you probably know our friend Erin Clemens. Every day, she uses her top-notch writing skills to help people understand her life with Asperger’s syndrome through her website, I Have Asperger’s, and as @AspergerSadie on Twitter, where she has nearly 1,900 followers. She also has a collection of beautiful, honest videos on her YouTube channel.

Erin says that Asperger’s is part of who she is and always will be. At the same time, she sees the services that she has received since her diagnosis as a teenager as essential for her growth and well-being.

The Autism Society: ‘Changing the definition of autism does not change the need for help’
The Organization

As the nation’s largest grassroots autism organization, the Autism Society’s foremost concern is that individuals with autism have access to the resources and services they need. As it exists today, the autism spectrum is vast. We are concerned that individuals who could lose the autism diagnosis may not fall under another classification, and would lose access to the appropriate services. With these changes, it is equally important that those who diagnose autism spectrum disorders have the training and information needed to diagnose appropriately.

At this time, it is unknown exactly what impact the DSM-5 revisions will have on individuals living with autism. But, before any final decision is made, the Autism Society feels there needs to be an in-depth assessment on the impact the changes would have on individuals receiving services today and in the future. Of particular concern is the impact changes could have on lower income families, those who could not afford life-changing therapies and other services if not for an autism diagnosis.

As a key aspect of the Autism Society’s strategic plan, the organization is focusing on ensuring all individuals showing the signs of autism are assessed and with an appropriate diagnosis by age 3, which makes way for appropriate early intervention services to begin. Early action drastically change outcomes and improves lives. Our major push in the next several years will be ensuring the information is accessible so that appropriate diagnoses are being made.

Ilyse Levine-Kanji: ‘A definitional sleight of hand’
The Parent

Levine-Kanji is a school committee member in Westborough, Mass. and a former employment discrimination lawyer. Her son, Sam, has autism. The following is an excerpt from a piece at WBUR.org.

Ilyse Levine-Kanji and her son, Sam

As a school committee member, I recognize how costly services for autism are, and I understand the current urge to more narrowly define autism. As a parent of a child with autism, I also know that the costly supports my son Sam has received – from his school, through our insurance company, and from our own pocket – have helped him immeasurably.

If you saw Sam, now 13, on the street, you would know immediately that he is unlike most children. Sam makes little eye contact; can “flap” his arms or make other disconcerting movements; speaks in an unnaturally loud, high-pitched sing-song voice; and has frequent loud bursts of laughter about things evident only to him. Throughout his school day, Sam requires the constant presence of a trained adult to painstakingly teach him information, from academics to reading social cues to following societal norms of behavior. Sam’s need for constant supervision continues once he gets home from school.

Sam’s oddities obscure his substantial intellectual capabilities, many of which have only become evident now that he is finally able to better express himself verbally. He does grade-level math at school and has recently become interested in learning French. He scored 98% and 100% on his two most recent French tests, exactly the same tests the typically developing students in his 7th grade class took. Sam can tell you the day of the week your birthday falls on, going forward or backward about 50 years, and also remembers most of what he did on any particular date for the past several years.

Sam was diagnosed with PDD-NOS [a broad definition of a developmental disorder] at 26 months. Due to his diagnosis, he was immediately eligible for intensive Early Intervention services. Our insurance company has paid for occupational therapy to help Sam overcome sensory issues and gross and fine motor deficits, speech therapy to improve his communication ability, and medication. The school district provides a full-time aide to help Sam get through his day, at a cost of upwards of $30,000 a year. Over the years, we have paid for neurofeedback therapy, therapeutic horseback riding, music therapy, and therapeutic listening therapy, among others; and I gave up my legal career to help with his care.

This cost-sharing arrangement will change radically if the American Psychiatric Association adopts a proposed new definition of autism that – a recent Yale estimate suggests – will exclude vast numbers of school children now diagnosed on the autism spectrum. Overnight, the number of individuals diagnosed with autism will fall by half, and the steady upsurge in numbers will turn into a dramatic decline. We will have “solved” the autism epidemic and helped school budgets, not by finding a cure, but by perpetrating a definitional slight of hand [sic]. Read more.

New York City Councilman Mark Weprin: ‘maintaining even the most basic quality of life’
The Politician

Over the years, as an advocate for autism awareness and services, I have encountered hundreds of people affected by autism.While each person’s experience is of course unique, there are two underlying themes ever-present in their stories: difficulty with diagnosis and frustration with the lack of services available.

A January 19, 2012 New York Times article, “New Definition of Autism Will Exclude Many, Study Suggests,” brought into view a plan by the American Psychiatric Association to narrow the definition of autism in the Diagnostic and Statistical Manual of Mental Disorders (“D.S.M”). Apparently a narrowing of what it means to be autistic, or on the autistic spectrum, would be helpful in clarifying ambiguities within the current definition and allow for more precise diagnoses going forward. The effect that a narrowing of that definition would have on access to autism related services, however, is questionable and concerning.

Individuals with autism, and their families, rely on an autism spectrum diagnosis in order to receive the special services that they require. These services include everything from early intervention to family training and support programs. Narrowing the definition of autism could potentially exclude many people from receiving such resources. Even for those that currently receive an autism spectrum diagnosis, quality services are already exceedingly difficult to obtain; budgets have been slashed, service providers are stretched beyond capacity, and the route to actually getting the appropriate services is too often a protracted battle.

As the lead proponent of the City Council’s Autism Initiative, I have fought, along with my colleagues, to ensure that funding is earmarked every year in the City budget specifically for autism-related services. The City Council has been able to provide thousands of families with vital support services and resources; unfortunately, the funding is only a drop in the bucket. Too many families in our City still go without the appropriate medical, social and educational resources that are vital to maintaining even the most basic quality of life.

The rise in autism spectrum diagnoses has been drastic and alarming. Most experts and advocates would agree that autism has now reached epidemic proportions. In the aforementioned article, Dr. Fred Volkmar, from the Yale School of Medicine, was quoted as saying “We would nip it in the bud,” referring to the effect that narrowing the definition of autism would have on the epidemic. While I am not a doctor, I simply cannot see how redefining a disorder, and excluding those who would have previously fit under the criteria, stops anything from getting worse. Epidemics should be addressed with research and resources – not redefinition. How would such a change to the D.S.M. affect those who would have otherwise been diagnosed? What about those that we previously diagnosed? Where will people just out of range of this newly defined diagnosis receive the benefits and resources they so desperately need?

Narrowing what it means to be autistic may be beneficial for a more concise medical diagnosis, but the potential human consequences need to be properly considered and addressed. This may be a purely academic issue to a select few, but it is an intensely personal and radically life-changing issue for many more. The American Psychiatric Association must take into account, first and foremost, what impact a redefinition will have on access to the vital services that those affected by autism desperately need and deserve.

Today’s post is by Erin Clemens. Every day, she uses her top-notch writing skills to help people understand her life with Asperger’s syndrome through her website, I Have Asperger’s, and as @AspergerSadie on Twitter, where she has nearly 1,900 followers. She also has a collection of beautiful, honest videos on her YouTube channel.

School isn’t easy, and I know I’m not the only one who feels this way. However, I have Asperger’s, and what I do know is that school can be very hard when you have Asperger’s or autism. This is because I not only had the everyday stresses of tests and peer pressure, but I had extra difficulties with other areas. A few of the main issues for me included hypersensitivities, a different learning style and miscommunication.

1. School Overwhelms the Senses

Photo by Becky Koss

School is a major place for sensory overload. The first thing I can remember about walking into the school building is the sound of the flag banging against the flagpole. Then I remember the sounds of school bus breaks squeaking, and kids screaming. That’s before I went into the school itself. After I entered, there were lockers banging, shoes squeaking on the floor, people still yelling. This is all before the first bell rings, which also hurts my ears. Finally, remember that these are only some of thehypersensitivies I experienced with sounds. This doesn’t include the smells, sights and feelings, all of which played a huge role in making an overstimulating environment.

Listening to my own music may have helped a little in reducing the amount of stress that I felt. However, the truth is, I don’t know how to deal with these issues, because I still have trouble with them.

2. A Different Learning Style

Another thing I had trouble with was with a difference in my learning style. So many of the classes had lectures, note taking and reading from textbooks, but none of this teaches me anything. I need to be engaged at a slow pace. I need the notes to be in front of me when you explain them, so that I’m not trying to write out all of the information while you are talking about it. What I wish I could have had was a different way to be taught. I learn through doing and experiencing. I fell into the minority, and therefore fell behind.

3. (Mis)Communication

A good teacher can make all the difference in the world.

One more issue, but certainly not the last, is with communication. Miscommunication, that is. I interpret things differently. What you say to me may not be the same thing that I hear. It takes a very special person to be able to see that I do not quite understand something the way I should. I remember one teacher in particular who was amazing in picking up on my struggles. He was a health teacher, but the difference with him from many of the other teachers that I had was in the fact that he honestly cared. He wanted to help me. When he saw I was struggling with something, he founda different way for me to learn it. When I thought I knew what he was talking about, he would say it in a different way, and I would realize I’d misunderstood.

This teacher is the only one I am still in contact with today.

Again, not everyone is going to have the same issues. I’m not saying that everyone with Asperger’s or autism will have the same difficulties that I did. However, I do know what I struggled with, and that I would never want anyone to experience the same issues that I did. One thing that learned is that, although it may not seem like much, one person could really make a difference in the life of another.

I hope that others can learn from me, too.

Last week, the Internet (even the neurotypical one!) lit up with the news: Autism will soon have a new definition.

The Diagnostic and Statistical Manual (DSM), published by the American Psychological Association, is the go-to guide for medical professionals, social workers and insurance providers when it comes to treating and paying for services for people with mental health disorders and developmental disabilities.

The fifth edition proposes to eliminate Asperger’s and PDD-NOS diagnoses, grouping the entire “spectrum” under one diagnosis: autism.

This is not unexpected; discussions on the proposed changes have been happening for at least a year. But it wasn’t until Thursday, when study results were presented at a meeting of the Icelandic Medical Association, that it became clear how dramatically the redefinition could affect rates of diagnosis — and service coverage.

The New York Times summed it up this way:

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and may make it harder for many people who would no longer meet the criteria to get health, educational and social services.

The American Psychiatric Association has appointed an expert panel to review the study results, which are still preliminary, as well as the proposed changes to the DSM-V.

Since the early 1980s, rates of autism spectrum disorders, such as Asperger’s syndrome and PDD-NOS, seem to have increased dramatically — to as many as one diagnosis per 100 children. But many researchers suspect that these numbers are inflated because of vagueness in the current diagnostic criteria, as well as a move away from even more vague diagnoses that have since become archaic (see: “MR”).

“The proposed changes would put an end to the autism epidemic. We would nip it in the bud — think of it that way,” Dr. Fred R. Volkmar told The Times. Dr. Volkmar, an author of the new analysis, is a member of YAI Autism Advisory Council and the director of the Child Study Center at Yale University School of Medicine.

Experts working on the new definition strongly question whether one in 100 children really have autism. The Centers for Disease Control and Prevention estimates the prevalence as being one diagnosis per 110 children.

Graph courtesy of Autism Speaks

“I don’t know how they’re getting those numbers,” said Catherine Lord, Ph.D., a member of the task force working on the diagnosis and director of the Institute for Brain Development, a joint project of NewYork-Presbyterian Hospital, Weill Cornell Medical College, Columbia University Medical Center and the New York Center for Autism. Dr. Lord has presented at past YAI conferences.

Until now, it was assumed that few people currently on the autism spectrum would be excluded from the new diagnostic criteria. But disagreement about the effects of the new definition will almost certainly increase scrutiny of the finer points of the changes, which will be finalized in December — about 11 months from now.

The New York Times:

The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual. Under the current criteria a person can qualify for the diagnosis by exhibiting six or more of 12 behaviors; under the proposed definition, the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors — a much narrower menu.

Of the more than a million Americans with ASDs, hundreds of thousands of them receive services paid for by state and federal government. The services range from early intervention therapy, educational services, job training, assisted housing, occupational therapy, SSI and assistance with daily living. All of these services help to increase the quality of life of people with ASDs and their families.

Additionally, many children and adults on the spectrum have come to embrace their diagnoses as an important aspect of their identities.

Mark Roithmayr, president of Autism Speaks to The New York Times that the proposed diagnosis should bring needed clarity but that the effect on services was not yet clear. “We need to carefully monitor the impact of these diagnostic changes on access to services and ensure that no one is being denied the services they need,” he said. “Some treatments and services are driven solely by a person’s diagnosis, while other services may depend on other criteria such as age, IQ level or medical history.”

(Regular readers of YAI Autism Community know that IQ is a very tricky measure of diagnosis.)

According to the most recent projections for the new diagnosis:

• About 25 percent of those identified with classic autism in 1993 would not be so identified under the proposed criteria.
• About 75 percent of those with Asperger’s would not qualify.
• 85 percent of those with P.D.D.-N.O.S. would not qualify.

The researchers will publish a broader analysis, based on a larger and more representative sample of 1,000 cases, later this year. Dr. Volkmar said that although the proposed diagnosis would be for disorders on a spectrum and implies a broader net, it focuses tightly on “classically autistic” children on the more severe end of the scale. “The major impact here is on the more cognitively able,” he said.

As the projections stand now, what would this mean for you and your family? Let us know by leaving a comment or following us on Twitter!

Here’s a great message to kids with Asperger’s and autism about how and why to diversify interests. It was made by our new friend Erin Clemens, who writes about her life with Asperger’s syndrome at her website, I Have Asperger’s, and as @AspergerSadie on Twitter, where she has nearly 1,900 followers. Check out the rest of her videos at her YouTube channel.

Photo by Anthony D'Onofrio

While many individual anecdotes have made the connection between behavioral issues in kids with autism and pain in the digestive tract, there was never any evidence to suggest why.

Until now.

The reason is still mysterious, but scientists have made an important discovery: Many children with autism have a bacteria in their guts that neurotypical children do not have.

The new results were published in the online journal mBio last week.

The study was conducted by Brent Williams and colleagues at the Mailman School of Public Health at Columbia University. Earlier work has revealed that people who have autism and gastrointestinal symptoms often have inflammation and other painful issues in their upper and lower intestinal tracts.

However, scientists don’t know what causes the inflammation or how the condition relates to autism itself. The research results appearing in mBio indicate the communities of microorganisms that reside in the gut of autistic children with gastrointestinal problems are different than the communities in the guts of neurotypical children. Whether or not these differences are a cause or effect of autism remains to be seen.

“The relationship between different microorganisms and the host and the outcomes for disease and development is an exciting issue,” says Christine A. Biron, the Brintzenhoff Professor of Medical Science at Brown University and editor of the study. “This paper is important because it starts to advance the question of how the resident microbes interact with a disorder that is poorly understood.”

Bacteria belonging to the group Sutterella represented a relatively large proportion of the microorganisms found in 12 of 23 tissue samples from the guts of autistic children, but these organisms were not detected in any samples from neurotypical children. Why this organism is present only in autistic kids with gastrointestinal problems and not in neurotypical kids is unclear.

“Sutterella has been associated with gastrointestinal diseases below the diaphragm, and whether it’s a pathogen or not is still not clear,” explains Jorge Benach, Chairman of the Department of Microbiology at Stony Brook University and a reviewer of the report. “It is not a very well-known bacterium.”

In children with autism, digestive problems can be quite serious and can contribute to behavioral problems, making it difficult for doctors and therapists to help their patients. Autism is poorly understood, but the frequent linkage between this set of developmental disorders and problems in the gut is even less so.

Benach says the study was uniquely powerful because they used tissue samples from the guts of patients. “Most work that has been done linking the gut microbiome with autism has been done with stool samples,” says Benach, but the microorganisms shed in stool don’t necessarily represent the microbes that line the intestinal wall. “What may show up in a stool sample may be different from what is directly attached to the tissue,” he says.

Tissue biopsy samples require surgery to acquire and represent a difficult process for the patient, facts that underscore the seriousness of the gastrointestinal problems many autistic children and their families must cope with.

Benach emphasizes that the study is statistically powerful, but future work is needed to determine what role Sutterella plays, if any, in the problems in the gut. “It is an observation that needs to be followed through,” says Benach.

We just read this fantastic article explaining the role of music therapy in early childhood education over at Huff Post Education. It was written by Ronna Kaplan, a past president of the American Music Therapy Association. The YAI Network has long understood the value of music in helping children connect with the world around them.

Three young children with autism spectrum disorders sat expectantly in a semi-circle, their teachers behind them. To begin the session the music therapist presented a picture schedule of what was about to happen.

The first picture showed it was time to sing “Hello.” Aiden waved when it was his turn, maintaining a skill he had recently mastered. Candace answered “hi” after her teacher prompted her. Jordan waited patiently for his turn, swaying from side to side with the beat, but when he heard his name he could no longer contain himself. He jumped up and down during his turn, singing “hello” at the appropriate time in the phrase and clapping at the end of his verse.

With the Hello song finished, the music therapist sang and played a simple original transition song, which she then repeated after each music experience, to help the children know what to expect. As part of this transition, each child removed the next picture from the list and put it in numerical order on the board.

For The Bear Went over the Mountain the music therapist distributed boomwhackers, large plastic cylindrical instruments, asking each child to name the color he/she wanted. She started tapping the floor with her boomwhacker to establish a steady, organized beat; encouraged the children to join her; and then proceeded to sing. At the part about the bear going over the mountain to “see what he could see,” she invited everyone to look through their boomwhackers and see small stuffed animals. Opportunities occurred to answer questions about animals… a cat, a horse, a bunny.

In Willoughby Wallaby Woo a kangaroo “jumped” on each child and the child passed it to another, a good opportunity to systematically encourage and enhance social interaction skills, like taking turns, that are generally lacking in children with autism spectrum diagnoses but needed in other aspects of preschool and later in life. Candace had her hand out ready to receive the kangaroo, so she was learning to anticipate that passing might occur. Jordan spontaneously said “thank you” as he passed to the therapist!

Music therapists sometimes use arts integration to address state academic content standards. In a preschool class where many of the children had speech and language delays, the music therapist helped children identify matching sounds and recognize rhymes in songs and words, part of a core pre-kindergarten language arts standard.

Read the rest of the article here.

Smoking: still bad for you, doesn't cause autism. Photo by Thanakrit Gu.

The bad news? It’s smoking during pregnancy, something that no one should do anyway.

Still, among the never-ending host of potential factors — living near a freeway, age of fathers, conceiving in the wintertime and, oy, antidepressant use — it’s good news that one has been definitely crossed off the list.

A large population-based study in Sweden has shown that there is no link between smoking during pregnancy and autism. The study, led by Dr. Brian Lee, an assistant professor at Drexel University and a team of international collaborators, will appear in a forthcoming issue of the Journal of Autism and Developmental Disorders and was published online in December.

Researchers have considered a variety of chemical exposures in the environment during pregnancy and early life as possible contributing factors in the development of autism spectrum disorders. Many have considered prenatal exposure to tobacco smoke a possible cause due to known associations with behavioral disorders and obstetric complications. Past studies of maternal smoking and autism have had mixed results.

“We found no evidence that maternal smoking during pregnancy increases the risk of autism spectrum disorders,” said Lee, an epidemiologist at Drexel’s School of Public Health, who led the research in collaboration with researchers from Sweden’s Karolinska Institute and the University of Bristol (Bristol, UK). “Past studies that showed an association were most likely influenced by social and demographic factors such as income and occupation that have associations with both the likelihood of smoking and with the rate of autism spectrum disorders.”

In the new study, Lee and colleagues analyzed data from Swedish national and regional registries for a set of 3,958 children with autism spectrum disorders, along with a control set of 38,983 children born during the same period who did not receive an ASD diagnosis. Overall, 19.8 percent of the ASD cases were exposed to maternal smoking during pregnancy, compared to 18.4 percent of control cases. These rates showed an association between maternal smoking and the odds of an autism spectrum disorder, in unadjusted analyses. However, the association disappeared when the analysis was adjusted for sociodemographic factors such as the parents’ income level, education and occupation.

Does that mean that income level contributes to autism? Confusing.

The report helps to reassure mothers who smoked during pregnancy that their behavior wasn’t likely responsible for their child’s autism, Lee said, and “crosses off another suspect on the list of possible environmental risk factors for ASD.” He cautioned, however, that smoking during pregnancy is still unhealthy for mothers and has other known risks for their children.

Lee was recently awarded a 3-year grant from Autism Speaks to study whether early immune system abnormalities are associated with the risk of autism spectrum disorders. The maternal smoking risk study was funded by a grant from the Stockholm County Council.

This is an important day of service and reflection for all Americans, but especially for those of us who continue Dr. King’s struggle for a more equitable society. During the 1950s and ’60s, Civil Rights leaders fought for just laws, jobs, education and social inclusion of African Americans.

That’s exactly what we are doing today for people with disabilities.

In some ways, it’s discouraging that more than 40 years after Dr. King’s assassination, we are still having to fight the same fight. But his legacy has also shown us that justice and equality will ultimately prevail, as painful and frustrating as the struggle can be at times.

Keep dreaming, friends, and never give up.