What I’ve been reading – January 2015

Here are some things I’ve read this past month that I found helpful, informative, or inspiring. If you like this and find it helpful, please share with others. Thanks!

Opinions and insights

Diary of a Homeless ASD Sibling A reader asked me if I would share her powerful, poignant post. Please give it a read, and check out her blog and her book. An excerpt of her post here: "My brother has been angry with me since I’ve been homeless. He barely speaks to me. I don’t fully know why but I can guess that he feels like I’m no longer there for him. If I could talk to him, I would ask him to please not be angry with me." Read more

Batman | This American Life. This podcast episode is about blindness, not autism, but it relates. It's about how the expectations we have for ourselves and for others can have a profound impact on outcomes. It's perfectly aligned with the concept of presuming competence. It's pretty astounding. Listen to the podcast or read a transcript.

Adult With Nonverbal Autism Shares What Sensory Overload Feels Like for Her. Excellent read."Sensory overload is the worst feeling in the world! I get it when I see too many people walking past me or if I hear too many noises at one time. For example, in a room of people talking, my brain tunes into everyone else’s conversation, and I struggle to filter the voices out and listen to the carer I’m with." Read more

Harsh Critics in Public Spaces, Judging Only What They See "At least Nico’s disability is visible if you’re vaguely aware of Down syndrome, though recognition causes its own problems when it leads to pity. Still, it’s worse for parents of children with hidden disabilities. Autism, for example, carries no clear physical markers, and behaviors can be even less predictable." Read more

The Secret to Well-Being. Amazing what happens when we presume competence and stop treating our children as damaged. "Although Ben could not talk at 6 years old, he could read and use a computer. While I was going through cancer treatments, he would type up notes and bring them to me; notes with messages like 'mom is sick' or 'mom is hurt.' I was completely blown away! I really did not think this kid was even capable of understanding how sick I was." Read more

The Stigma of Autism: When All Eyes Are Upon You. An excellent piece that looks at how stigma affects autistics and their families across a variety of cultures. Read more

Acceptance as a Well Being Practice "...my Asperger’s syndrome diagnosis ... answered a question that I’d been asking myself since childhood: Why am I so different from other people? That may seem like a trivial question, but when left unanswered for decades, it can become unsettling and haunting. Finally having an answer opened the door for me to do something I’d never been able to do: accept myself as I am." Read more

Look Me In The Eye: High Functioning People Like You Don’t Speak for My Child! From John Elder Robison: "As an alternative to functioning labels, consider describing someone has having particular challenges or not. I am very verbal. Other autistics are non-speaking. A few don’t communicate successfully at all, in ways we understand, though they may still be trying.Many of us have medical challenges of very different kinds. To say that I speak and your son does not is not to call him less. One day he may speak, and you won’t say that anymore.Or maybe he will never speak. You never know with this autism." Read more

Autism ≠ Developmental Delay "There are so many things Emma can do, that I cannot. Her mind, as she so beautifully described it, is a 'wonder, channel changing, multi-screened on fast forward' thing of beauty that defies all limits placed upon it." Read more

Science and news

Autism and mercury: never held a lot of interest, and now almost none. For all the fearmongering and hyperbolic bloviating, a simple analysis of Google search term trends shows that any interest in the mercury-autism connection is now almost nil. You'll still find pockets of interest, but these are of the conspiracy-theory sort. How much money and energy was wasted on this fraudulent endeavor? Read more

Twins! A Key to the Mysteries of Autism. An older article, but for obvious reasons, an article of interest to yours truly. Read more

What Does it Mean to Have Just a Hint of Autism? An interesting, informative IAN article on BAP, the Broader Autism Phenotype. Read more

Do Omega-3 Fatty Acids Reduce Hyperactivity in Children with Autism? The results are a bit inconclusive but hold some small amount of promise. More, larger studies are required to make a definitive case. Read more

CD Recovery No. 163. A woman, concerned about Miracle Mineral Solution (the bleaching agent some parents give rectally to their children to "cure" them of autism), created a fake testimonial to see if the solution's creator, Kelli Rivera, would use it in her marketing materials. Miracle Mineral Solution is dangerous and has no scientific basis, but uses anecdotal testimonials for parents to prove it works. (Anecdotes are not science.) No surprise, Rivera did run with the testimonial without even the slightest bit of investigation into its veracity. "I made a recovery story for my child, based on so many others which I had read, I felt bad doing it as I do not like to pretend but it was for the sole purpose of finding a greater truth." Read more

The impact of song Great story about how one woman is using music to help children with disabilities. "Music is used as a therapeutic tool to work toward a specific goal, whether mental, physical or behavioural, that is set to reflect the needs of each individual child." Read more

Surplus of synapses may stunt motor skills in autism "Ultimately, the findings may help researchers categorize individuals with autism based on their neural circuits and develop targeted treatments." Read more

Unethical DAN doctor to be supervised by acupuncturist "An Illinois doctor who subjects autistic children to 'unwarranted, dangerous therapies' must have her work reviewed by an acupuncturist." One of the strangest things about this story is that, as part of her reprimand, the doctor was allowed to choose her own supervisor (an accupuncturist no less!). Read more

Lincoln Center Plans a Theater Work for Children With Autism Fantastic. "'Up and Away' is an immersive work for small audiences: Each show will be performed for an audience of eight students and their caregivers or guardians. The elevators at the Rose Building will be presented as the start of a hot-air balloon journey, and the seating in the theater will be designed as balloon baskets. The production itself uses puppetry, projections and music." Read more

Postmortem brains point to molecular signature of autism "The findings fit with those from an imaging study published last year, which found that microglia are more activated in people with autism than in controls. It is still unclear whether microglia activation is helpful or harmful in the brains of people with autism." Read more

U.S. expands program to track autism prevalence. "The federal government is expanding its autism monitoring program to better understand the rising prevalence of the disorder. The move follows controversial changes to the diagnostic criteria for autism, which are expected to lower the number of new cases nationwide." Read more

What I’ve been reading – December 2014

Note: Because of the holidays, my December "What I've been reading" post is a little earlier than usuual. Here are some things I’ve read this past month that I found helpful, informative, or inspiring. If you like this and find it helpful, please share with others. Thanks!

Opinions and insights

Ability is more than the sum of savant skills "Autism is commonly conceived of only as a set of serious deficits, except for when it confers spectacular, miraculous-seeming, but isolated savant abilities or splinter skills. This is a problem." Read more

We’re Doing Autism Research All Wrong | MIT Technology Review "We’re sinking millions into the search for a 'cure,' even though we now know that autism is not a disease but rather a neurological difference, one that cripples some of us while bringing a few others extraordinary gifts." Read more

When I Slowed Down and Actually Listened to My Brother With Autism "I’m betting you have a loved one who you rush. Whether it’s yourself, your child, your sibling, your spouse…maybe you’re rushing language, skills, getting out the door on time. Don’t beat yourself up over it, but do go ahead and slow down." Read more

What’s MSSNG in Autism? "...this effort won’t help any of the autistic children today. Benefits may flow from the research one day, but the beneficiaries will be tomorrow’s children. Today’s children will be long grown up, for better of for worse." Read more

The Letter I Would Have Written for My Parents When I Was Still Nonverbal "I hope for any parent who reads this letter — coming from a now 26-year-old adult on the autism spectrum — that you never give up on your loved ones. The autism spectrum is wide and everyone’s journey is going to be slightly different. Become an advocate because by doing what you’re doing now, you not only give hope to your loved ones but you give hope to the autism community." Read more

The Hardest Part of Autism "And that is now the hardest thing about autism – my inability to shield him forever from judgment, ridicule and mean children and adults." Read more

On Autism Speaks' Suzanne Wright, the frustrated savior From the always excellent Emily Willingham: "If you admit that others can understand the people for whom you claim to speak, then you cannot position yourself as the savior. The Wrights founded Autism Speaks to save their grandson. When others build a bridge to understanding and acceptance, a savior is no longer needed. The raison d'être of their entire organization crumbles if people start building bridges past and through and around them between non-autistics and autistics." Read more

Science and news

SD (San Diego) Man With Autism Defies Odds, Graduates Law School. A lovely, hopeful story. Read more

Google Teams Up With A Controversial Research Group To Figure Out Autism "Google and an autism research group have launched a new program to help scientists study autism and come up with new treatment options." Read more

Gauging intelligence in autism over time "Ultimately, however, we should aim to be less reliant on tests designed for young children, as the activities used to measure IQ in toddlers and preschoolers are less relevant for adolescents and adults, and may fail to capture their true cognitive abilities." Read more

Risperidone has no effect on core symptoms of autism "Results from a ten-year study, published 19 November in the Journal of Child and Adolescent Psychopharmacology, bolster the idea that risperidone has no effect on the core symptoms of autism." Read more

New method helps resolve conflicting autism diagnoses "To diagnose autism, clinicians often rely on two standardized diagnostic tests: the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). But the results of these two tests do not always jibe...A new method, described 28 October in the Journal of Autism and Developmental Disorders, aims to fill this void." Read more

What I’ve been reading – November 2014

Here are some things I’ve read this past month that I found helpful, informative, or inspiring. If you like this and find it helpful, please share with others. Thanks!

Divisions in the autism community. The tragic murder of little London McCabe this month has sparked a lot of discussion about how autism is represented in the media and elsewhere. In a Facebook post which argues that divisiveness in the autism community might actually be a good thing, the always excellent Invisible Strings writes, "Today, thanks in large part to the internet and social media, autistics are contributing their own perspectives. Turns out: we have a slightly different view of things. We don't want to be hidden away or eradicated. We want respect.” He goes on to write, "Negative views about autism are the norm...and for too long, they were the only view. Division means that new voices are being heard. This is good.” Read more.

Ido in Autismland: My Speech at the Autism Society Self Determination Conference. Ido shares a recent speech he gave. "I warn you about one thing though. A consequence of teaching autistic people to type is that we have opinions and we have determination. Once we can express them we will demand a voice in our own futures.” Read more

Jerry Seinfeld and Autism. This month, Jerry Seinfeld said he has come to believe he is somewhere on the autism spectrum. Reactions to his comments ranged from supportive to outraged. John Elder Robinson, author of Look Me in the Eye, offered an interesting point of view, including this: "The 'my autism is worse than yours' is a counterproductive and destructive way of thinking. Look at depression and Robin Williams. He looked pretty successful and functional a few month back, didn’t he? But now he’s dead. None of us can know the struggles of another. There is no better and worse in autism’s affect.” Read more

Therapy for autism may alter brain activity, behavior. A preliminary study shows promise for Pivotal Response Therapy. "Following the treatment, seven children with autism showed enhanced activity in the medial prefrontal cortex — a brain region known to be involved in social cognition. By contrast, six untreated children with autism showed a slight decrease in brain activity in this region.” We’ve had positive experiences with this form of therapy for C. Note: this study is preliminary and small, and should be taken with a grain of salt until more studies and reviews can support its thesis. Read more

Rise in autism fueled mainly by diagnostic changes. Yet another study, this time out of Denmark, which suggests there is not really an “epidemic” of autism. This particular study, "published 3 November in JAMA Pediatrics suggests that up to 60 percent of the increase in autism prevalence in Denmark between 1980 and 2011 stemmed from diagnostic changes in that country.” The other 40% was attributed to greater general autism awareness. As for that so-called epidemic, the article notes that “…most people who talk about an ‘epidemic’ of autism in the U.S. are referring to a chart that maps the disorder’s dramatic rise after 1985. But many of them may not know that autism didn’t exist as a diagnosis until 1980. Before that, it was called childhood schizophrenia.” Read more

JRC Survivor Speaks Out (Part 1 of 4) "Hi, my name is Jennifer. I am diagnosed on the Autism Spectrum. Like so many of us, I have endured restraint, seclusion and aversives throughout my life, including seven years at the Judge Rotenberg Center. This is some of my story.” A four-part essay on the horrors inflicted to this date upon autistic individuals at the JRC. Start reading (part 1)

Naturopathy vs. Science: Autism Naturopaths are hopping on the "cure autism" bandwagon, supporting all manner of unproven, often dangerous and painful treatments. Read more

Is this how people see our children?

Go to a search engine (not Google*) and type, "Autistic people..." Look what appears:

Houston, we have a problem.

If you're a regular reader of this blog and you've noted that I'm writing more often about acceptance and the need to repudiate the pseudoscientific myths surrounding autism, now you know why. I don't want my child — or yours — to live in a world where they are defined by lies and falsehoods.

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* Google has changed how they handle auto-completion on autism-related search queries in part due to a flashmob protest. Good for them!

Remember this face

If you follow autism news, you're going to hear a lot about six-year-old London McCabe's parents in the coming days and weeks. London's mother threw him off an Oregon bridge yesterday; his body was recovered four hours later. (And, yes, you'll even hear some loons start quacking about vaccines.)

You are going to hear about how autism destroyed this family. You are going to hear about the broken system, the inadequate support services, the stress of dealing with multiple mental, physical, and financial crises.

In short, you are going to hear a lot of sympathy for London's parents, and a lot of demonizing of autism (and by correlation, those with autism).

What you won't hear a lot about is London himself, the little boy whom one family member described as "a good kid. He loved hats." You won't hear much about the child featured in this birthday video. You won't be able to read the blog post where his mom recounted how she rushed her husband to the emergency room, where nurses said "they couldn't believe London was severely autistic — he was so well-behaved," because her blog has been deleted. You may read his father's recent post in which he describes London as "pleased as punch (their family was reunited after a separation). He lays on our laps and puts our hands together. Last night he made the 'mmmwha!' sound and gave his Mommy a kiss. Then he made the same sound and pushed our faces together. He’s all smiles."

If and when you hear about all the difficulties and tragedies London's parents faced; when you read that autism is a monster and that London threw tantrums so loud his voice grew hoarse; when you hear from experts who claim parents of children with autism can't really be held accountable because of the stress of it all; I'd ask you to think about London.

Remember his face. He is the victim.

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Related: Gigi Jordan, a wealthy Manhattan entrepreneur, was found guilty of manslaughter yesterday in the death of her autistic son, Jude. This was so clearly a case of pre-mediated, cold-blooded murder it boggles my mind that she was given what is essentially a slap on the wrist. Not surprisingly, Jordan was part of the cure-at-all-costs community. It says something about how we, as a society, value those with disabilities.

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Update: November 18, 2014. Someone sent me this video of London visiting his father in the hospital. When the defense and the media spins the same narrative they always do — that autism is the monster that destroyed this family — remember this video.