What I’ve been reading — February 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, insights and news

We aren’t your scapegoats. End of story. One of the very best pieces I’ve read against those who use autism as a scare tactic in their war against vaccines. "Which to me was actually far more offensive on its face than the persistence of fear that vaccines have anything to do with autism. Because that’s not just an irrational fear; that statement expresses a conviction that it’s okay to choose a group of people and use our existence as a scare tactic for your own ends. That if a group of people is presumed sufficiently voiceless, you can strip them of agency and the right to self-representation and use them to promulgate a falsehood that’s convenient to your own beliefs just because it’s easy." Read more

We Are Like Your Child: Do You Believe In Your Children? "If you think I am not like your child, I ask you: do you believe in your child? Do you leave the possibilities open? Do you nurture your child so that he feels safe to grow into the adult he is germinating inside himself?" Read more

5 New Year’s Resolutions for Autism Speaks. An excellent rundown of how AutismSpeaks can do things differently — and better — in 2015. Read more

Non Verbal Autism. "Especially damning are the assumptions that my intelligence is low because of my thwarted attempts to respond the way others expect; with verbal words. I can remember a time when a person said to Mom that I have a very low IQ of 40, and I wanted to scream, NO! But I couldn’t. It was horrible not to be able to defend myself.” Read more

Questions for David Mandell: Curbing autism's costs. "Last year, Mandell laid out the costs of having autism, from lost productivity to pricey hospital stays1. He found that it is the fourth most expensive condition in the U.S., trailing behind only trauma, cancer and cardiovascular disease. What’s more, data from Medicaid claims suggest that available autism therapies do little to lower these costs." Read more

Autism’s First Child. I first read this story in the Atlantic before C had an autism diagnosis, and I found it then, as now, touching and (surprisingly) reassuring. Read more

Waukesha police officer helps calm woman with autism with kindness. When a police officer got a call about an unruly customer at a Target, officer "Bukouras quickly realized that the woman just wanted to buy a doll. He also learned she has severe autism and did not understand the concept of money. He calmed her down, and when he found out the caregiver didn't have money to pay for the doll, he bought it himself and gave it to her.” More stories like this, please. Read more

Mom starts scout troop for kids with autism. Great story. Read more

When Children With Autism Grow Up. This was very, very hard to read (emotionally), but I’m glad I did. “...it’s not Scooter’s disability that isolates him; society does." Read more

Movie review: Who Killed Alex Spourdalakis. "Alex deserved better in life. He deserved medical care, be it psychiatric, standard medical or both, to bring him back to the happy person he was before his crisis. But Alex also deserves better in death. He deserves that his life and death not be used as a tool to promote Andrew Wakefield’s poorly supported one-size-fits-all approach to autism." Read more

A curious experience. A review of the theatrical adaptation of The Curious Incident of the Dog in the Night-Time, which I was fortunate enough to see last month. Read more

Science

Multiple diagnoses. “In fact, 95 percent of these children (with autism) have at least three other psychiatric disorders, and 74 percent have five or more, according to a study in the Journal of Autism and Developmental Disorders." Read more

The connections in autistic brains are idiosyncratic and individualized. Research has been contradictory: are autistic brains over- or under-connected? New research may have reconciled the discrepancy: "Researchers at the Weizmann Institute of Science in Israel determined that brain regions with high interconnectivity in controls have reduced connectivity in ASD, and regions with lower connectivity in controls have elevated connectivity in people with ASD.” Read more

Adults with autism feel frequent, lingering anxiety. "Previous studies have linked a high intelligence quotient to anxiety in children with autism. But little is known about anxiety in adults with the disorder.” A new study of 20 adults considers just that. Read more

Autism can mask anxiety symptoms. "Anxiety appears to be common in individuals with autism. In fact, a study of our inpatient unit published in Decemberfound that 63 percent met criteria for an anxiety disorder, such as social phobia or obsessive compulsive disorder. This is in line with results from previous studies.” Read more

Research: Autistic Savants | Autism Research Institute. "The estimated prevalence of savant abilities in autism is 10%, whereas the prevalence in the non-autistic population, including those with mental retardation, is less than 1%.” Read more

Noisy patterns of connectivity mark autism brains. Fascinating, and makes a lot of sense (IMHO). "A new study may have solved a decade-old debate about whether the brains of people with autism are more or less connected than those of controls: They’re both, depending on where in the brain you look." Read more

The research linking autism to vaccines is even more bogus than you think. "Here are five reasons — and many links to further reading — that should remind you just how terrible his (Andrew Wakefield's) research was." Read more

Study downgrades autism gene's effects to rare glitches. "Some earlier studies suggested a strong link to a group of Amish children who inherited mutations in both copies of the CNTNAP2 gene have severe epilepsy and autism.” New research suggests that link may not be as strong as once thought. Read more

Examination of the Safety of Pediatric Vaccine Schedules in a Non-Human Primate Model: Assessments of Neurodevelopment, Learning, and Social Behavior. A previous, small study by funded by an antivaccine consortium suggested a link between MMR and autism-like symptoms in certain monkey species. A larger study, funded by the same group and conducted by the same reserachers, suggests there is, in fact, no such link. Will the antivax groups retract? Doubtful. Read more

Not picky, anxious

Last week, C ate things he's never eaten before. Strange, exotic things like pancakes, chicken, a croissant, some bread, and a few leafy greens. Maybe this doesn't seem like big news, but it is.

Prior to last week C ate approximately five things: nuts, crackers, yogurt, fruit, and protein bars. But he's not a picky eater. Scratching your head? It's true.

Enter anxiety

Anxiety is far more prevalent in people with autism, and C has a lot of it. Tons of it. It manifests itself as rigidity, a fear of the new or unexpected, phobias and perseverations about things he can't change like his age, gender or skin color. Yup, it's true.

When he was younger, he ate most things we offered him. (We had to keep him eating a lot because his lung disease meant he burned calories very quickly, and many kids with this condition end up with a feeding tube. C, fortunately, did not.)

As he's gotten older, his anxieties have become more pronounced, and food is no exception: if he sees something on his plate that doesn't belong, that breaks with expectation, he can have a full-blown, tear-strewn meltdown. Not an angry meltdown, but something closer to a severe existential crisis.

The $100 slice of pizza

When we go anywhere, we have to bring separate meals and snacks for C. At birthday parties, people ask, "Is he on a special diet?" I say, "Only by his own choosing, and if you can get him to eat a slice of pizza, I'll give you $100." And I mean it.

Telling others about this often results in The Picky Eater Lecture. E.g., "Oh, my son was a picky eater, and now he eats anything! Just be patient." Or, "We used rewards and it worked." Then there's, "Only feed him things he doesn't like and eventually he'll get so hungry he'll eat them." They chalk it up to some behavior issue, when in fact it's the result of deep-seated anxiety.

We've been working on this a long time, trying to break down the anxiety by introducing new foods slowly and without pressure or duress. It's a focus for us not just because his diet is a hassle, but because he needs to eat more than crunchy carbs.

So what changed?

Why is he suddenly willing to try a few new foods, albeit very hesitantly and sporadically, especially at a time when his anxieties are more pronounced than ever?

We have our theories, but one thing in particular stands out: his school has cooking sessions. They go shopping in a grocery store, purchase ingredients, follow recipes, and eat the food they make. C loves this process...up to the eating part! So we started cooking with him at home, too.

Whereas he's normally a ball of non-stop movement, he stands patiently (mostly) on a step-stool at the kitchen counter. He loves the measuring, the cutting, the process of it all (natch!).

I think this sense of control over the preparation of the food is making the final product less fear-inducing, more approachable, more comprehensible. It's no longer a foreign substance that mysteriously appears on his plate: it's something whose very creation he contributed to.

The real point here isn't about how C is eating more foods, but about how he's overcoming a limiting anxiety. We're not bribing, cajoling or forcing him to change; we're trying to help him take control of the fear and perhaps turn it into something positive.

Who knows, maybe at some birthday party in the not-too-distant future, he'll actually eat a slice of pizza. One can dream, right?

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

Small victories

C's fingernails are a little long. Mental note: trim them during bath time tonight.

But wait. I haven't trimmed his nails in a long time. I haven't needed to: he's been chewing them himself. In fact, he was even chewing his toenails (flexible little bugger).

Anxiety.

The past couple of years brought a lot of it, and along with it came things like head-banging, shirt-chewing, licking (everything in sight!), and nail biting.

Most of the more obvious signs have abated since he's settled into his new school with its smaller, quieter classes. And now the nail biting is apparently gone.

So tonight I'll trim those little nails, and I'll picture the anxiety falling away with them. And I'll remind myself that progress isn't usually measured in big leaps and bounds, but in victories as small as overgrown fingernails.

The scream

There we are, a happy if weary traveling family, having lunch at a rest stop in Delaware, when C decides something isn't quite right. And so, in an instant, he emits the loudest, most ear-piercing scream imaginable. I mean, it's truly deafening. If you're within a few feet, your ears will ring for a while afterward.

It doesn't last long, this scream, but it's enough to scare the bejeezus out of everyone within one hundred feet — us included.

And now all eyes are on us, some frightened, some glaring angrily, and a few settling into knowing sympathy (or something approaching sympathy). Anyway, this is a relatively new tic C's developed. It happens most often when he's taken out of his routine and put into an unfamiliar, somewhat chaotic setting...like on a family road trip, at a rest stop in Delaware!

The first few times he screamed like this, I felt my face grow hot and red with embarrassment. Being totally honest, I wanted to stifle it, to cover his mouth with my hand. But, as I noted, it was over almost as soon as it started — one quick, piercing cry.

I can't say I'm getting used to it, but as with any of his past tics, we know that drawing attention to it will only reinforce the behavior. Yes, that includes negative attention. So we redirect as quickly as possible, get him moving onto the next thing and out of the moment. At the same time, I do my best to shut out any feelings of embarrassment, to ignore the stares and glares. They don't know or understand, and while I'm sympathetic to their ears, my focus is where it should be: on my son.

So if you're out — say in a rest stop in Delaware — and a kid screams at the top of his lungs for no apparent reason, take a deep breath, be sympathetic, and be glad it's not you.