Hugs, camps, books

Things have been hectic, thus fewer posts. I have been a bit more active over on Facebook; won't you join me there? In the meantime, just a couple quick notes.

We've been working with C to help him show his emotions in appropriate ways, in particular affection. It looks like it's working.

I took this photo just before a very tough morning. You see, it's summer break for the twins. This means some much-needed downtime for C, and day camps for M. As we dropped M off at his camp, C fell apart. He saw the kids doing a morning routine, playing, laughing. He was devastated that he couldn't stay with his brother, that he couldn't be part of the summer camp experience. Obviously, this isn't easy on us, either.

On the drive home, my wife and I chatted with him about how this wasn't possible just now, but hopefully soon. We try to be honest with him, but still protect his feelings. He gets it, even though he doesn't like it.

In other news, I just started reading the just-released and already critically-acclaimed NeurTribes by Steven Silberman. It's not just incredibly informative, it's a great read. I highly recommend it, but don't take my word for it:

“NeuroTribes is a sweeping and penetrating history, presented with a rare sympathy and sensitivity. It is fascinating reading; it will change how you think of autism, and it belongs, alongside the works of Temple Grandin and Clara Claiborne Park, on the bookshelf of anyone interested in autism and the workings of the human brain.”

— Oliver Sacks, author of An Anthropologist On Mars and Awakenings

In March, Silberman gave a great TED Talk on the forgotten history of autism. Check it out if you haven't already.

That's it for now. More soon...hopefully.

What I’ve been reading – September 2014

Here are some things I’ve read this past month that I found helpful, informative, or inspiring.

Tip

The Underwear Rule. Due to their vulnerability, children with disabilities including autism are three times more likely to be victims of sexual abuse. The Underwear Rule is a set of five easy-to-remember tips for parents and children to help prevent such abuse. Read more

Science

Autism Prevalence Unchanged in 20 Years. We keep hearing about an epidemic, and I keep saying, "there is no epidemic." Nice to see in-depth, large-scale research supports my contention. As the author notes, "This latest study showing a stable autism prevalence between 1990 and 2010 is in line with a consilience of scientific evidence showing that autism is mostly genetic, has its onset prenataly, and that the apparent increase in prevalence is largely due to diagnostic substitution, increased surveillance, greater acceptance, and broadening of the diagnostic criteria." Read more

Brains of children with autism teem with surplus synapses. There is a some debate on this topic, but a few post-mortem studies seem to confirm that in at least some autism cases, there is a statistically significant surplus in synapses. In this particular study, "Sulzer and his colleagues began by examining postmortem brain tissue from 20 children, half of whom had been diagnosed with an autism spectrum disorder. In line with other studies, they found that the brains of children and adolescents with autism have a higher density of dendritic spines than controls do." (Note: some biomed folks will tell you it's a case of inflammation not surplus, but this is a distortion of the actual science.) Read more

10 Weirdest Things Linked To Autism. A list of bizarre things people once thought caused autism (and in some cases, still do). Read more

Are Children with Autism Better at Math? Although fMRI studies can be problematic, and this is a small study, early indicators suggest enhanced math skills in some people with autism may be due to brain wiring. “Our findings suggest that altered patterns of brain organization in areas typically devoted to face processing may underlie the ability of children with autism to develop specialized skills in numerical problem solving.” Read more

Opinions and insights

Imaginings – an insight in to my autistic mind. An autist describes the "movies" he creates in his mind, and ends with this wisdom: "Overall what I think this shows is that any autistic behaviour will have a meaning, and a purpose behind it — no matter how it might look to neuro-typical people.  Everybody has behaviours – they are part of the human condition – and often these can be incredibly beneficial to the person involved.  In the case of people who have autism, unless the person is hurting themselves or somebody else, they should just be left to get on with them – you never know what benefits they might bring." Read more

Amplify This: "Don't Murder Your Autistic Kids. Raising a child with any disability is hard, but it's not an excuse for murder. Nonetheless, the media often seem more sympathetic toward the parent who murders their child than they are toward the actual child. "Above all, and right now, reporters and writers need to stop sympathizing with murderers like Kelli Stapleton. Parents need to stop saying that they understand why Kelli chose to poison her daughter, because unless they've actually attempted to murder their own child, then, no, they don't." Read more

What neurodiversity isn't. I love this piece so much. "Neurodiversity means changing the definition of success. It means prizing self-actualization over self-camouflage. It means accepting how integral autism is to one’s identity, one’s understanding of themselves and the world around them. Autism is a Pervasive development disorder — embracing it means understanding that there is no aspect of life that it does not touch. It is the filter through which one experiences and interacts with the world." Read more

Why I Don’t Care What Causes Autism. Because I'm fascinated by the science of autism (and the brain in general), I'm still very interested in how it comes to be. Nonetheless, like the author of this piece, I find many parents (especially with a newly diagnosed kid) can get swallowed up asking "why?" I get it, I was there, too. But now that I'm less worried about why, I'm a lot happier. Read more

Dear "Autism Parents." An adult autistic has some strong and insightful words of advice for parents of autistic children. Read more

This Is My Definition of Autism. A simple, almost poetic definition of autism. Read more

Autism, Parenting, and the Importance of Attitude. I have not always had a positive attitude in life, but somewhat ironically, all the health and developmental issues that have happened to my sons have actually made me a more grateful, reflective person. As Shannon Des Roches Rosa writes in this wonderful piece, "While all parents, of autistic children or otherwise, deserve the right to vent lest our heads and eyeballs explode (and then who would clean that up?), when it comes to complaining, I hope we can try to be dabblers, not devotees. And that, if things really do get too hard to bear, we can rely on communities secured by hard-won optimism to envelop us and hold us aloft, until we have the strength to strike out on our own again." Read more

News

Drexel's autism institute gets $3.6M gift. Nice. "Drexel University’s A.J. Drexel Autism Institute has received a $3.6 million grant from an anonymous donor. The money will be used by the institute’s life course outcomes research program for a series of initiatives focused on understanding and improving quality of life issues for people, at all ages, on the autism spectrum." Read more

What I’ve been reading – August 2014

Here are some things I’ve been reading that you might find helpful, informative, or inspiring.

Opinions and insights

The Problem With Functioning Labels An excellent post detailing the fundamental flaws with functioning labels. "High and low functioning labels are at best pointless and at worst costly red herrings distracting us from what’s important... acknowledging that every autistic person is an individual with their own set of strengths and challenges, and getting them the support they need to deal with both." Read more

The Seduction of "Recovery" The opening line sums it up: "Perhaps the single most insidious and ultimately destructive promise during those early years after my daughter was diagnosed was the idea of 'recovery.'" A thoughtful exposition on the folly of seeking recovery for a child with autism. Read more

An Open Letter to Richard Dawkins Dawkins recently tweeted that the moral thing to do would be to terminate a pregnancy if it was determined the child had Downs Syndrome. Ido in Autismland responds: "I am sure my family has struggled because of my disability. I have too, more than you can understand, but despite my disability, I am sure my life is purposeful and I hope I am making this world a little better." Read more

Resources

My Child / All About Me Handbooks: Every child with Autism is different With school starting soon (or now!), I found this helpful handbook that parents can download and fill out with details about their child. The goal is to help teachers understand the unique characteristics of each of their incoming students. Read more

Science

Guest blog: London as a crucible for autism in the 1950s An absolutely fascinating look into the history of autism diagnosis, where a few dedicated researchers changed the course of autism history forever. (Note: add this to the pile of research contradicting the claim that autism is a new phenomenon.) Read more

The Nine Points Related to the article above, here are The Nine Points Mildred Creak and her working group helped establish as a preliminary but common and fundamental set of criteria for an autism diagnosis. It's a testament to the quality of the work that these Nine Points are so close to what is used today as diagnostic criteria. Read more

Autism, Atlanta, MMR: serious questions and also how Brian Hooker and Andrew Wakefield are causing damage to the autism communities That whole CDC whistleblower story that got the antivax crowd in a lather? Bogus from top to bottom with a lot of shady doings by, yes, Andrew Wakefield and Brian Hooker. Too much to write here, but this is an excellent recap. Read more

Oxytocin Isn't Lacking In Children With Autism, Researchers Say You may have heard that Oxytocin could be critical in helping people with autism. This large-scale study indicates that it doesn't look like the panacea some hoped for: "'Our data blew that out of the water,' says Karen Parker, a Stanford researcher involved in the most rigorous study yet of autism and oxytocin levels." Read more

Since bleach wasn’t enough, let’s start adding hydrochloric acid to MMS? The incredibly dangerous biomed treatment, Miracle Mineral Solution, is back with a new brand and formulation. Catering to the "cure" crowd, this snakeoil promises to clean the toxins that cause autism. As this article notes, parents who use MMS even post "pictures of the intestinal linings of their disabled kids, passed with the help of MMS enemas. They caption these pictures with statements about how MMS killed 'worms.'" Sadly, MMS is popular enough to be sold at the annual Autism One conference run by Jenny McCarthy's autism pseudoscience organization, Generation Rescue. Read more

What I’ve been reading – July 2014

Here are some things I’ve been reading that you might find helpful, informative, or inspiring.

Parenting

How I Learned to Accept My Son’s Quirky Obsession. I've written in the past about how C's obsessions often end up being a great way to connect with him, despite the fact that some professionals warn against encouraging them. After trying to stem his son's obsession with Sesame Street, this ASD dad now accepts and encourages it. Besides creating a deeper bond, he and his son now have entirely new ways to engage and play. Read more

Why I Best Remember This Moment. File this under important to remember. The mother of a girl with Down syndrome weighs the good against the bad. "Then I have to remember that the bad is just life. The bad moments have a purpose. The bad make the good that much better." Read more

Parenting an Autistic Child. The autism journey is framed as one of tragedy and heartbreak, where the child (with autism) is the cause of all that suffering. But what is the effect of that message on the child? "The things that are being said, all those recommended check lists and the questions asked by all those autism organizations and experts are encouraging us to teach our children that they are the problem." As my views on autism evolve, posts like this help me see a new way forward. Read more

Opinions

Stop Using my Children to Scare Parents out of Vaccinating. This post pretty much sums up my opinion of the anti-vaccination movement, particularly in terms of how they view autism and children like my son. As the author writes, "Vaccines are blamed for everything from common skin rashes to the Sandy Hook school shooting. But the big thing, every time on every group or thread, is autism. Autism is a scourge. Autism is a tragedy. Autism is taking our children away. My autistic child is damaged, I was told, and vaccines are to blame. The more I read, the angrier I became...As an autism parent, it offends me my children’s condition is being used to scare people away from life-saving medicine. I don’t want that to happen. It angers me that there are people out there who truly think my children and others like them would be better off dead than just a little different." Read more

Science

New Study: Most genetic risk for autism resides with common variation. A fascinating, important, large-scale study published in a well-respected science journal, the result of which is the identification of a series of genes that are likely involved in autism (not one single 'magic bullet' gene, as has been speculated). Moreover these genes are very common in the general population, but when occurring in significant enough numbers in any given individual, increase the risk of autism. Read more

No, autism in Scandinavia isn’t rare and “high functioning” A common trope among the anti-vaccination crowd is that autism barely exists in Scandinavian countries. A large-scale study debunks that myth. Read more

What I've been reading - June 2014

Here are some things I've been reading that you might find helpful, informative, or inspiring. Bury My Son Before I Die. "I used to worry about Benjamin dying but now fifteen years in, I worry about him surviving beyond my husband and me. Only we have comforted Benjamin through daily seizures and seven surgeries. We are his one true voice. No one can understand Benjamin the way we do." Gut-wrenching and brutally honest. Read more

When You're Gone: Practical Planning for Your Child's Future. A helpful and thorough guide to the things special needs parents should do now to help their child after they're gone. Read more

The Obsessive Joy Of Autism. "If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not 'age-appropriate', stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared." Read more

Sesame Street, This is an Autistic Speaking. An adult with autism makes a heartfelt plea to Sesame Street to reconsider its partnership with Autism Speaks, an organization she feels stands in stark contrast to the inclusion and acceptance Sesame Street is known for. Read more

On Education and Communication; A Message to Parents, Professionals and People with Autism. A powerful, hopeful message from Ido, a young man with autism who, though once written off by teachers and therapists, is now proving them all wrong. Read more

I Am a Pushmi Pullyu. A 50-year-old with autism comes to grips with being both an extrovert ("Yes, you heard that right. I am an Autistic extravert, the creature some would assure you doesn't exist.") who struggles with social situations, sensory issues, and PTSD. Read more

Tips for Encouraging Joint Attention. Fun, easy ways to do just what the article title suggests. Read more

What I Wish Your Child Knew About Autism. Ten things one mom wants you and your non-autistic child to know about her son, Leo. Read more

Out of the Closet. Observations by Ido on all the children who are "new communicators," finding their voice through assistive technologies. Read more

And finally...

Mayor de Blasio and Speaker Silver Announce New Steps to Help Families of Students with Disabilities. Great news for NYC families — like ours — who have struggled with the DOE. Read more