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Nick Walker on Neurodiversity: Some Basic Terms & Definitions

25 Oct

Nick Walker starts his introduction with “I’m an Autistic educator, author, speaker, transdisciplinary scholar, activist, parent, and martial arts master.” His writing is excellent and I’d highly recommend adding Neurocosmopolatinism to your list of blogs to track, if it isn’t there already.

A recent article by Mr. Walker covers the topic of neurodiversity clearly and accurately. It’s a great resource: Neurodiversity: Some Basic Terms & Definitions.

It is one of those articles I’d like to copy in it’s entirety. But instead I’ll send you to: Neurodiversity: Some Basic Terms & Definitions.


By Matt Carey

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“We want respect”: adults with intellectual and developmental disabilities address respect in research.

21 Aug

The concepts of neurodiversity are not complex and yet are often misunderstood and misrepresented. Respect is not a difficult concept. The need for research to respect those who are the focus is not difficult.  Respect includes aknowleging that disability does not disenfranchise a person from her human rights. Respect means including the views and opinions of those involved in the research, even if they are intellectually disabled.

Consider this recent study:

“We want respect”: adults with intellectual and developmental disabilities address respect in research.

Abstract Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental disabilities on respect in research. Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences.

For emphasis: ” . Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity.”

Call it “human rights and dignity” and it isn’t a controversial concept. It may not be always followed but it isn’t controversial. Call it “neurodiversity” and somehow it’s a big deal.

One of the misconceptions I’ve read is that neurodiversity is a topic for so-called “high functioning” autistics. Many comments have come through this site calling my child “high functioning” because of the views expressed here. (Those commenters assumed incorrectly).  Here’a something to consider: the study noted above not only focuses on people with intellectual disability, it makes no mention of autism in the abstract.   The study did not even come through in my daily email of pubmed autism abstracts.

Deficit, Difference, or Both? Autism and Neurodiversity

11 May

A pubmed abstract out this week Deficit, Difference, or Both? Autism and Neurodiversity brings the fourth entry in pubmed using the term “neurodiversity”. One other paper is in Portuguese, and another is from Sweden. That said, I am looking forward to reading this study. I say looking forward because when I checked the the full paper was not available yet. I know of the first author, though. Steven Kapp is an autistic researcher at UCLA. He is a member of the Autistic Self Advocacy Network (ASAN) and was on my list of people to speak with at IMFAR last year.

Here is the abstract.

The neurodiversity movement challenges the medical model’s interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N = 657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.

The Simons Foundation lists this paper as one of the “papers of the week“.

You can read more about the lead author, Steven Kapp, in the UCLA paper. The Daily Bruin article is Autistic student overcomes symptoms to help treat others. The story tells a little of his childhood and how he is now a graduate student researcher. And his plans for the future:

Eleven years later, Kapp is back at UCLA as a doctoral student in psychological studies in education. His goal is to become a professor and research ways to improve the quality of life and adaptive skills of people with autism.

The paper is based on an online survey and those are prone to biases. However, the paper does appear to address some important issues on the differences *and* the overlap between the medical model and neurodiversity approaches to autism. Further it doesn’t fall into the false-dichotomy trap of many neurodiversity discussions of seeing autism as deficit *or* difference. And, as we can see from the Daily Bruin article, Mr. Kapp is interested in researching ways to improve the quality of life for autistics.

I have hope that this is an article which can help to educate researchers (and others) about neurodiversity without the straw-men and misconceptions that are used by opponents. But, beyond that, the paper starts the dialogue in the literature of how to incorporate neurodiversity ideas into research and practice. Depending on how presented, this could be a very valuable paper.

Loving Lampposts video clips

1 Apr

Loving Lampposts is a new documentary film by filmaker and autism parent Todd Drezner. Here’s a blurb from their website to give you an idea about the film:

What would you call a four year old who caresses all the lampposts in the park? Quirky? Unusual? Or sick?

Such labels are at the center of the debate about autism: is it a disease or a different way of being—or both? In Loving Lampposts, we witness this debate and meet the parents, doctors, therapists, and autistic people who are redefining autism at a moment when it’s better known than ever before. Motivated by his son’s diagnosis, filmmaker Todd Drezner explores the changing world of autism and learns the truth of the saying, “if you’ve met one autistic person, you’ve met one autistic person.”

I put it on my Netflix list (you can too: link) right after reading the review on The Thinking Person’s Guide to Autism and the interview with the director on Neurotribes. Netflix doesn’t carry it yet, but with luck I may have a copy soon. One can purchase a copy as well.

If you are interested in what Todd Drezner has to say, he has the first in a series of articles up on the Huffington Post: Learning to Embrace Autism.

For more on what the film is about, here are a series of video clips the produces have made available:

Opening sequence with director Todd Drezner introducing autism spectrum disorder through his son, Sam

Loving Lampposts Clip#1 from Cinema Libre Studio on Vimeo.

Understanding autism through “Rain Man” and as described by author of “Unstrange Minds” Roy Richard Grinker

Loving Lampposts Clip #2 from Cinema Libre Studio on Vimeo.

Sharisa Kochmeister, autistic adult with a genius level IQ, and her father, Jay – “I don’t have a disease. I have a disability that causes unease…”

Loving Lampposts Clip #3 from Cinema Libre Studio on Vimeo.

Mothers Kristina Chew and Nadine Antonelli initially hoping to find a “fix” for their autistic children

Loving Lampposts Clip #4 from Cinema Libre Studio on Vimeo.

Simon Baron-Cohen, Director of the Autism Research Centre, explains definitions of autism and Asperger’s

Loving Lampposts Clip #5 from Cinema Libre Studio on Vimeo.

About the anti-childhood vaccination movement featuring actress and mother, Jenny McCarthy

Loving Lampposts Clip #6 from Cinema Libre Studio on Vimeo.

Blogger, mother, and activist Kristina Chew shares the joy of watching her son ride a bike

Loving Lampposts Clip #7 from Cinema Libre Studio on Vimeo.

Autistic adult, Dora Raymaker, using a computer to talk, explains how autism affects her ability to communicate

Loving Lampposts Clip #8 from Cinema Libre Studio on Vimeo.

Dr. Paul Offit discusses his involvement in the vaccine industry and the MMR vaccination

Loving Lampposts Clip #9 from Cinema Libre Studio on Vimeo.

Loving lampposts

30 Mar

Loving Lampposts is a film by an autism parent. I’m waiting for my copy (disclosure: I have asked for a review copy from the producer). In the meantime, reviews have come out by better prepared writers than I. Steve Silberman at Neurotribes has an interview with the filmaker: “Loving Lampposts,” A Groundbreaking Documentary About Autism, Love, and Acceptance. Shannon Des Roches Rosa at The Thinking Person’s Guide to Autism has Loving Lampposts: Accepting and Understanding Neurodiversity. Liz Ditz at I speak of Dreams has A Must-See Movie: Loving Lampposts.

I remember first hearing about this project some time ago when there was just a very sparse website. I had no concept of where the project was going. I was left with a couple of questions then, including: is this going to be a fairly shallow movie about a single quirk in a single autistic? (The idea for the title comes from the fact that the filmaker’s son, well, had a love of lampposts. )

From the reviews (above) and from the materials already available, this looks to be a good movie. A movie which presents some very important questions and gives thoughtful discussion to them. From the Loving Lampposts website:

What would you call a four year old who caresses all the lampposts in the park? Quirky? Unusual? Or sick?

Such labels are at the center of the debate about autism: is it a disease or a different way of being—or both? In Loving Lampposts, we witness this debate and meet the parents, doctors, therapists, and autistic people who are redefining autism at a moment when it’s better known than ever before. Motivated by his son’s diagnosis, filmmaker Todd Drezner explores the changing world of autism and learns the truth of the saying, “if you’ve met one autistic person, you’ve met one autistic person.”

Here is a video clip made available:

Loving Lampposts Trailer from Loving Lampposts on Vimeo.

In this short clip we see the wonderful boy, Sam, Prof. Richard Grinker (anthropologist, author of the book Unstrange Minds, and autism researcher), I believe that’s Kristina Chew’s voiceover in a clip of her son Charlie riding his bike, Jenny McCarthy, and parents at a National Autism Association meeting.

Press materials for the book do what they should: they make me want to see the movie. Yes there are the excellent photos of Sam and Lampposts:

But there are also photos of Stephen Shore working with a student:

And a photo of Dora Raymaker:

To point out only a few of the photos.

From the Press Kit, here is the list of participants in the film. It’s a very big and rather diverse group of people.

Featured

Nadine Antonelli and Noah: A resident of Wilmington, N.C. and a medical doctor, Nadine initially believed that she should try to cure her son Noah’s autism. Over time, though, she came to accept his diagnosis and she now works to provide support to other families with autistic children in Wilmington.

Simon Baron-Cohen: The Director of the Autism Research Centre at Cambridge University and a world-renowned expert on autism.

Kristina Chew, Jim and Charlie Fisher: Professors at St. Peter’s College and Fordham University respectively, Kristina and Jim are raising their autistic son Charlie in Cranford, NJ. Kristina is a popular blogger writing about her experiences with Charlie and advocating for neurodiversity.

Paul and Jackie Colliton and Billy: Residents of New York City, Paul and Jackie adopted their autistic son Billy when he was ten days old. He did not begin to speak until age seven.

Todd and Erika Drezner and Sam: The filmmaker, his wife, and their autistic son.

Roy Richard Grinker: A Professor of Anthropology at George Washington University, Richard is the father of an autistic daughter and the author of Unstrange Minds, a history of autism and an examination of how it is treated around the world.

Lila Howard and Lyndon: The 87 year-old mother of a 60 year-old autistic son, Lila raised Lyndon as a single mother at a time when there was no support for parents of autistic children. Ignoring experts who blamed her son’s condition on her and suggested he be institutionalized, Lila helped Lyndon learn to live independently. Today, he lives in his own apartment in New York City, where he has lived for 13 years. Lila remains his primary caretaker.

Jay Kochmeister: The father of Sharisa (see below).

Sharisa Kochmeister: An autistic adult who does not speak, Sharisa was believed to have an IQ of 30 from the time she was two until she turned 13. Almost by accident, her family discovered she could read, and she now communicates with a computer with text to speech capability. Her IQ is at a genius level, and she is a graduate of Denver University who advocates for autistic people.

Eileen Muniz, Gianna, Marz, and Vincent: The mother of three autistic children in Mohegan Lake, NY, Eileen and her husband recently separated.

Paul Offit: A doctor who is the Chief of Infectious Diseases at Children’s Hospital of Philadelphia. He argues strongly against the idea that vaccines cause autism, and is the author of Autism’s False Prophets, which exposes scientifically unsupported treatments for autism.

Dora Raymaker: An autistic adult who communicates using a computer with text to speech capability, Dora is working on her graduate degree in Portland, Oregon. She is the co-director of the Academic Autistic Spectrum Partnership in Research and Education.

Johnny and Chris Seitz: An autistic adult and performance artist, Johnny worked with his wife Chris to develop “God Does Not Make Garbage,” a 30 minute show that goes inside the world of autism.

Stephen Shore: Diagnosed with autism in 1964, Stephen was said to be profoundly ill and was recommended for institutionalization. Today, he is a Professor at Adelphi University. He also teaches music to autistic children and lectures about autism all over the world.

Cindy Walsh, Eric, and Robbie: The mother of twin boys with autism in Chantilly, CA, Cindy believes she has “recovered” her children with alternative treatments.

ALSO APPEARING

Elizabeth Avery: An autistic adult living in the Boston area.

Kenneth Bock: A doctor who treats patients with autism using alternative therapies.

Nancy Cale: The co-founder of the organization Unlocking Autism.

Paul Collins: The father of an autistic son and the author of Not Even Wrong, a history of autism.

Doreen Granpeesheh: The Executive Director of the Center for Autism and Related Disorders.

Kristin Holsworth: The mother of an autistic son, Troy.

Peter Hotez: A doctor who is President of the Sabin Vaccine Institute, Peter is the father of an autistic doctor. He says that there is no scientific evidence that vaccines cause autism.

Karen Hubert: A sales representative for New Beginnings Nutritionals, Karen markets vitamins and supplements to parents of autistic children.Dan Joyce: A representative of the organization Autism Speaks.

David Kirby: The author of Evidence of Harm: Mercury in Vaccines and the Autism Epidemic.

Estée Klar: The mother of autistic son Adam, founder of the Autism Acceptance Project, and writer of a blog called “The Joy of Autism.”

Robert Krakow: The father of an autistic son a plaintiffs lawyer in vaccine injury cases.

Jenny McCarthy: The celebrity actress is the mother of an autistic son and a leading proponent of the idea that vaccines cause autism.

Arnold Miller: The Director of the Language and Cognitive Development Center of Boston.

Barbara Moran: An autistic adult with a special interest in steam locomotives and old GE refrigerators.

Bob Morgan: The owner of Heavenly Heat Saunas, Bob believes that saunas can “detoxify” autistic children.

James Neubrander: A doctor who treats patients with autism using alternative therapies.

Christina Nicolaidis: The mother of an autistic son and the co-director of the Academic Autistic Spectrum Partnership in Research and Education.

Laura Rose: The mother of a “recovered” autistic son, Jason.

Ralph James Savarese: Ralph and his wife adopted a six year-old profoundly autistic boy who had been severely abused. Today, although Ralph’s son cannot speak, he is a straight A student in an Iowa high school.

Bill Schindler: The director of the Mild Hyperbaric Therapy Center, Bill works with parents who treat their children’s autism by giving them treatments in hyperbaric chambers.

Phil Schwarz: The father of an autistic son and an advocate of neurodiversity.

Kassiane Sibley: An autistic adult and advocate for neurodiversity.

Autumn Terrill: An expert in special education who works with Billy Colliton.

Anju Usman: A doctor who treats patients with autism using alternative therapies.

A reminder for neurodiversity

2 Sep

Its been awhile since I blogged about neurodiversity and why it matters to me as a concept. Two recent events in my own life has made me more aware of that than usual.

In the first event, which concerns me directly, I have had to have a change in the medication I take that helps me regulate the manic depression (bipolar) I am diagnosed with. Nobody knows why I need to adjust my medication, only that it needs adjusting and so I shall shortly have Lamotrigine added to the medication regime I have to take.

How does that remind me about neurodiversity? It reminds me that the basic tenets of neurodiversity – respect for the individual differences those with different neurological makeups have – are my best way of being able to move forward in this world. More on this later.

In the second event, which occurred to some of my new family two days ago, myself, my partner and her two daughters – of whom the eldest (she is 4) is autistic – were shopping. Lily began to have a meltdown, a not unknown event in supermarkets for her and one for which we have a carefully worked out strategy. However, this time our strategy was rudely interrupted when a young woman began to shake her head, gawp openly at Lily and make tutting noises. She obviously felt Lily was a naughty child, rather than an autie child.

My partner and I decided that we had had enough of people judging Lily and so remonstrated with this woman. We both explained that Lily was autistic and unable at the age of four to regulate herself in high impact environments but we had to eat and anyway why should we exclude Lily from coming out with us as a family?

The woman waved her hand at us both in a casual dismissal and said we weren’t ‘controlling’ her properly. I smiled through gritted teeth and asked her what she knew about autism. She refused to answer. I asked her again and she walked off with another casual wave of dismissal. My partner’s by now angry shout of ‘shes autistic and a little girl, she can’t help herself’ following her down the aisle.

Of course, this isn’t the first time either one of us have been exposed to such ignorance and I doubt it will be the last. I’m also sure that many parents and autistic people reading this will be familiar with ‘the look’ that can come from such ignorant people who believe they have a divine right to judge others. But it again reminded me of neurodiversity and why I believe in its most basic tenet.

My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up.

People like the woman in Sainsburys are the ‘anti-neurodiversity’. They believe we can and should judge immediately, based on no other evidence than what we see and hear right in front of us. To me, neurodiversity should sit and think, consider the possibilities and act accordingly, based on a desire to help society in the belief that society should do the same for us.

By specifying a desire to include those with differing neurological disorders/disabilities/differences, neurodiversity helps me to feel secure in the world. It also means that I can feel secure in the world my children will inherit.

The Autism Mom’s Survival Guide – A Susan Senator Interview

25 Mar

Blogger and autism mom Shannon Des Roches Rosa has an interview up with author and Autism-Hub blogger, Susan Senator.

Did you know that autism parents can choose an identity other than Avenging Warrior or Martyr? That it is reasonable to aim for happy lives for us and our children, despite our kids’ challenges? If this is news to you, then you need to read Susan Senator’s forthcoming The Autism Mom’s Survival Guide, A.S.A.P.

Des Roches Rosa shares a little bit with readers about her own autism mom experience reading Susan’s first book, Making Peace With Autism, and then explores the makings of the new book, The Autism Mom’s Survival Book.

On the question of how to decide which, of a variety topics, to include in her new book, Susan answers:

I looked through my own blog and at many other autism blogs to figure out what was on people’s minds. What were the basic parts of adult life and how were autism parents dealing with those parts? Did they feel successful?  If so, what could they pinpoint that had helped them? What became clear to me was that autism moms and dads did, in fact, find joy and satisfaction in their lives but that they had learned a new way to see their lives, to see success.

From the interview, it’s apparent that the book will touch on many topics in family life, and likely include perspective from dads. I’ll be interested to read more about “parents taking time for themselves”. It seems so important, yet so hard to really put into practice a lot of the time. Des Roches Rosa also points out her own interest in Susan’s honest discussion of residential placements, but there’s a lot more to be learned about Susan and her forthcoming book in the interview.

Please don’t take my short note as coverage of the topic, go read the interview and enjoy another round of apt blogging from Squidalicious.

Interview: Susan Senator and The Autism Mom’s Survival Guide