Tag Archives: autism

How do you translate neuroscience into education?

The Talk:

Storming the Ivory Tower: Why autism interventions don’t work as they should in the community and what to do about it

In Plain English:

Autism treatments & management techniques that succeed in neuroscience labs often fail in public schools. (And we really, really need to figure out why…)

The Speaker:

David Mandell of University of Pennsylvania

The Sponsor:

Simons Center for the Social Brain Colloquium

What it covered:

Even though there are thousands of neuroscientists working on developing management and treatment options for autism, very few of those techniques make it into real-world homes and classrooms. Despite the growing public concern about autism, there aren’t very many people focusing on translating data into things teachers can do to help their autistic students learn.

(The issue here is that the type of training you need to be able to interpret an fMRI and the type of training you need to be able to understand the social dynamics in how public school teachers interact with their students are two very, very different types of training. And since most graduate programs assume that you’re going to be spending 60-80 hours per week working on stuff related to your degree, hardly anyone has time to pursue graduate level work in both of those areas, much less decipher the intersections and implications of the two….But that makes the handful of people who do work on translating neuroscience into implementable best practices all the more valuable.)

David Mandell is one of those people. His background is in public health, so his research focuses more on the social and infrastructural issues around autistic people’s education and treatment than what’s going on in their brains. He covered a huge amount of ground in a relatively short talk, but the takehome message was the point he led with: Translational research, or research that focuses on how to implement lab scientists’ ideas in real-world clinical settings,  is “the biggest gap in the autism research portfolio” and that we need to do better.

Hospitalization, special ed, and behavioral interventions are all expensive. And the costs don’t disappear once the autistic kids become adults. “We think about autism as a childhood disorder, but the life expectancy for folks with autism is not that different than the general population,” Mandell pointed out. “They spend most of their lives as adults.”

Continue reading “How do you translate neuroscience into education?” »

Why I Said “ASAN isn’t perfect” (aka “Building an Interdisciplinary Dialogue between Neuroscientists, Psychiatrists, Parents, and Autism Advocates is really hard work”)

Part I: Why I’m Writing This Post

Last week’s post about ASAN’s statement against the Combating Autism Act shattered the record for page views on this site. I was kind of overwhelmed by how many people who had never met me, many of whom were autistic themselves, reblogged my post and thanked me for writing it.

That was really gratifying to hear because even though I identify as neuroatypical (or neurodivergent, whichever term you prefer) because of my ADHD, I do not (and cannot) claim to speak for the autistic community or the autism parent community in any way.

But I believe that everyone should have a say in what kind of medical interventions their bodies are subject to and that the biomedical establishment does not spend enough time talking to autistic people about what kinds interventions they’re comfortable with.

Continue reading “Why I Said “ASAN isn’t perfect” (aka “Building an Interdisciplinary Dialogue between Neuroscientists, Psychiatrists, Parents, and Autism Advocates is really hard work”)” »

7 Reasons Why an Autism Advocacy Organization Would Oppose the Combating Autism Act

BREAKING NEWS: The Autistic Self-Advocacy Network (ASAN) just issued an official statement in opposition to the renewal of the Combating Autism Act.

If any of you are wondering, “Why would an autistic advocacy organization oppose a bill that allocates funds toward autism research?” here’s a quick breakdown of the most frequently-cited reasons (in no particular order).

#1: The name “Combating Autism” is in and of itself offensive. Think about how people would react if an appropriations bill for PTSD research was called “Combating PTSD”. It would never fly, and it’s not okay to equate “autism” to an “enemy combatant that needs to be killed/neutralized”. Ever.

#2: Many autistic people see their autism as an integral part of their identity. It’s kind of similar to the way most of us identify as being an extrovert or an introvert, but more fraught. This does NOT mean that all people who use the #StopCombatingMe hashtag are completely against medication, but they are against framing autism as something that is inherently destructive and needs to be “cured”, “combated”, and/or “eliminated”.

#3: The media, politicians, lobbyists, and many parental advocates have a bizarre fixation on trying to “save” autistic children and prevent future cases of autism, while ignoring the insanely high rates of unemployment and homelessness among autistic adults. It is as if autistic adults are invisible, but everyone wants to stop white, upper/middle-class children from “falling prey to autism” at all costs.

Continue reading “7 Reasons Why an Autism Advocacy Organization Would Oppose the Combating Autism Act” »

Investigating neural patterns in the younger siblings of autistic children – Recap of talk by Dr. Charles Nelson

The Talk:

A Cognitive Neuroscience Approach to the Early Identification of Autism

In Plain English:

A scientist investigates the patterns of neural wiring in infants whose older siblings have autism

The Speaker:

Charles Nelson of Boston Children’s Hospital

The Sponsor:

Simons Center for the Social Brain at MIT

What it covered:

Dr. Charles “Chuck” Nelson is one of the best known (and judging from the way he was introduced and addressed at this colloquium, he’s also one of the best-liked and most-respected) researchers in the field of neurological development. Before coming to Boston Children’s Hospital, he made a name for himself by working on face recognition in infants.

He stopped by the MIT Simons Center for the Social Brain colloquium to tell other researchers about his team’s latest findings in  neurological development in autistic infants (and their siblings).

He prefaced his talk by saying that he was really torn about whether this talk should focus on the more mechanistic aspects of his work (“Which neurons are firing?” & “What neurotransmitters are making them do that?” type questions) or the more descriptive aspects (questions about overall statistical trends in “at-risk” populations) of his work. Continue reading “Investigating neural patterns in the younger siblings of autistic children – Recap of talk by Dr. Charles Nelson” »

Neurodiversity & Disability Rights in the Autistic Civil Rights Movement- Recap of talk by Ari Ne’eman

The Talk:

“Autism, Neurodiversity, and Disability Rights: Then and Now”

In Plain English:

Disability advocates are in the middle of an ongoing struggle to ensure civil rights for autistic individuals, and hardly anyone has seemed to notice.

The Speaker:

Ari Ne’eman, president of the Autistic Self-Advocacy Network

The Location:

Harvard Law School Project on Disability

What it covered:

This event was less of a lecture and more of a roundtable discussion about Disability Rights and Neurodiversity (a term so obscure that the Harvard Gazette mistakenly listed the title of the talk as “Autism, Neodiversity, and Disability Rights”). There were barely a dozen of us in the room, which made for one of the most intense academic conversations I’ve ever witnessed.

Ari Ne’eman began by giving an overview of the history of discrimination against and institutionalization of autistic individuals. Our culture has a long tradition of imprisoning people who are physically and/or mentally disabled, but “medical” institutionalization didn’t begin in earnest until the late 1800s, when the eugenics movement took hold. Ne’eman cited Alexander Graham Bell as one of the leaders of the American eugenics movement.

Bell and his eugenicist compatriots wanted a way to contain “different & defective members of the human race.” So they built massive institutions to house anyone who was considered a threat to mainstream society. Ne’eman emphasized the point that these early institutions were not specifically designed for autistic individuals* but rather anyone who was socially undesirable or difficult to manage. Continue reading “Neurodiversity & Disability Rights in the Autistic Civil Rights Movement- Recap of talk by Ari Ne’eman” »