Thursday, March 31, 2011

Early Screening: Ode to the MCHAT

Dr. Som
The Pensive Pediatrician

Editors' Note: Some years ago, the American Academy of Pediatrics recommended that childhood primary care physicians --family practice and pediatricians -- screen for autism in well-child visits, as well as screening for other developmental delays. One autism screening tool is the M-CHAT, or Modified Checklist for Autism in Toddlers, which is validated for children between 16 and 30 months of age.

The following is Dr. Som's plea to her fellow primary care physicians to use the M-CHAT regularly.


Ode to the M-CHAT

Parents with toddlers we know you can read.
23 questions is all that we need.

Answer yes, answer no, is all that you do--
Just five short minutes when your child is two.

It need not be English. Try Hebrew, Chinese,
Turkish, Polish, perhaps Japanese.

What’s up, doc? You cannot? No, not today?
No copier. No pens. Insurance won’t pay?

But Adam’s autistic, and his mom doesn’t know.
Neither will you. You big dumb bozo!

He does not point nor respond to his name.
Notice his gaze. That’s why his mom came!

It’s online and it’s free, so don’t make a fuss--
Give it out and score it. You can and you must.

Discover it now, and improve his outcome.
Why be stupid or lazy? This boy needs a chum!

Diabetes or cancer -- you’d be ordering tests.
Delayed development? No biggie you guess!

In jail, or the hospital, on risperdone--
Bloated and fat, and feeling alone.

Don’t let that happen. Rescue him now!
Refer and be kind. Don’t furrow your brow.

He’s funny and strange -- like you and like me.
He’s a bit of a puzzle. Help find the key.

One authorized site for online use of the M-CHAT is http://www.firstsigns.org/

A version of this post was previously published at The Pensive Pediatrician

Wednesday, March 30, 2011

Church With the Special Needs Child

Amanda Broadfoot
www.lifeisaspectrum.com

We found a church today. At least, I'm pretty sure we have. We've been looking for a while, and talk about finding something right under your nose: We ended up at the same place where we've been attending Kindermusik every Wednesday night for the past five months, Good Samaritan United Methodist.

Dave went to the nursery with Billy and Willow to help ease Billy into his new surroundings. We explained to the nursery staff that Billy is autistic, and they were all just wonderful. After an initial, brief meltdown over the sight of Mama high-tailin' it to the grownups' room, Billy apparently settled in very nicely. At coloring time, he helpfully shared his orange crayon with everyone -- whether or not they wanted a bit of orange on their drawing -- and serenaded the whole class with a couple of verses of "Jesus Loves Me."

I got a glorious hour to sit in a beautiful room, sing beautiful music, pray quietly, and ponder philosophical and spiritual points. It felt downright luxurious. Like a spa for Mama's soul.

There was a time when I took going to church for granted. I grew up in church with a tight-knit group of friends who went on trips together, put on plays, occasionally behaved badly and yet, were ultimately baptized into a family that was more than the sum of its parts. Church was fun -- and yes, uplifting and spiritually rewarding -- but when you're a kid, the fun is what gets you there. I always wanted my children to have the same opportunity.

When we moved to Tallahassee, we started looking for a church to call home. One of our first stops looked very promising: It was known for its extensive children's program, which was a priority to me. For a couple of Sundays, we attended, with Dave taking Billy to children's church -- a much more structured environment than Billy was used to. During the Bible story, Billy's echolalia (repetitive talking) continued. He was overwhelmed by all the new people and the number of structured activities; each small group quickly changed from one station to the next activity every few minutes. And he melted down.

But Dave reported to me that he was able to get it under control, and felt that, with a little time, Billy would settle into the routine.

The next Sunday, though, the teacher made it clear to Dave that Billy was too disruptive to the rest of the class, so instead Dave ended up taking Billy outside to play. When Dave told me what happened, I was upset. I wrote an email to the head of education, and probably got a bit high and mighty in my quoting of the Bible and Jesus' words about, "Whatever you do to the least of these, you do unto me," plus waxing poetic about how the church was supposed to be God's house and no one, certainly not a child, should be turned away.

I felt genuinely mortified about five minutes after I sent that email. But then the phone rang; it was the head of education, and my mortification couldn't come close to matching hers, she said. She couldn't have been nicer. She explained that Sunday school teachers were volunteers and they weren't always equipped or trained to handle special needs. I assured her I understood, and the last thing we wanted was to ruin any other child's experience at church. I had thought we were really making headway. Next time, I promised, I would attend with Billy; I would take him out at the first sign of a meltdown. And somewhat reluctantly, I agreed to teach him his Sunday school lesson by ourselves, in the hallway, so  his echolalia wouldn't disturb the other kids' lesson.

Then, before we hung up, she said something that completely changed my mind. "Of course," she said, "I still can't promise you it's going to work."

You can't promise me it's going to work? If it doesn't, then what? We get expelled from church? Really? Ah, just forget it.

Compare that with the response I got from a gentleman at Good Samaritan today: "If we're doing our job right as a church," he said kindly, "you and your son will always feel at home here. No matter what." I admit it: I burst into hysterical tears. Great impression on the new congregation: Mascara smearing everywhere. I tried to talk, to say, "I'm not usually like this," (though if you know me, you know that I actually am just like that, and lied to my new church), while snorting and wiping my nose. Lovely.

Everyone was so kind. The pastor even said that she had just this week spoken to someone about starting a special needs Sunday school. I assured her there was a need. I'm sure there are plenty of families with special kids who could use the spiritual support of a church family -- not to mention an hour of real, literal peace.

If you attend a house of worship, I'd really love to know how it handles kids with special needs. If you don't know, could you do me a favor and ask someone? I have a couple of reasons for asking this favor: First of all, I'm curious about the various ways this is handled and looking for ideas. Secondly, I think that the more people ask this question, the more likely the issue is to be addressed.

I know most places probably haven't addressed the issue simply because they don't have any special needs kids in their congregation. But that's one of those chicken-egg scenarios. Maybe there aren't any families with special needs in the congregation because attending is just too hard for them.

Again, I'm not trying to give financially- and manpower-strapped churches, synagogues, and their ever-dedicated volunteers a hard time. Not in the slightest. If anything, most of us parents of developmentally challenged children really wish our kids could fit right in, without any special accommodations whatsoever. I hate the idea that anybody would think we expect them to remake Sunday school for Billy -- but would it be OK if he just walked around during story time, while listening, rather than having to sit perfectly still? We'll go with him. We'll keep him from dismantling the carefully put-together Lego Noah's ark and try to keep his singing contextually appropriate (he's just as likely to launch into "The Gambler" as "Jesus Loves Me").

Because let's face it: When it comes to spiritual growth, we all have special needs sometimes.

----

This essay was originally published at www.lifeisaspectrum.com.

Tuesday, March 29, 2011

Loving Lampposts: Accepting and Understanding Neurodiversity

When my son Leo's autism comes up in casual conversation, the person I'm talking with usually reacts as follows: either they have a relative or close friend with a child with autism and want to talk about it, or they just love that Temple Grandin movie and want to talk about it.

In both cases, I've longed for a more appropriate autism movie to recommend, one that explores the complexity and diversity of autism experiences beyond one brave, famous woman's challenges and successes, one that reassures and educates families of children with new autism diagnoses, one that  immerses the viewer in the autism worldview I believe best serves our community: neurodiversity.

That film is finally here. It's called Loving Lampposts. The director, Todd Drezner, showcases the varied faces of our community: the advocates, the adults, the loving parents, the beloved children -- plus the professionals, the doctors, the researchers, and the gadflies.  Loving Lampposts takes the oft-repeated phrase "if you've met one autistic person, you've met one autistic person" and gives it life. You need to see this film. And if you want to help others better understand autism, you need to recommend Loving Lampposts to them.


Loving Lampposts Trailer from Loving Lampposts on Vimeo.

Steve Silberman of Neurtribes has posted an interview with the director, Todd Drezner, for those who want to know more about the film's mission and genesis.

Loving Lampost's parent, adults autistic, and professional interviewees (there's often overlap) include Nadine Antonelli, Kristina Chew, Jim Fisher, Estée Klar, Roy Richard Grinker, Paul Offit, Paul Collins, Ralph James Savarese, Simon Baron-Cohen, Phil Schwarz, Dora Raymaker, Stephen Shore, Sharissa Kochmeister, Elizabeth Avery, Johnny Seitz, Barbara Moran, and Kassiane Sibley. Several of whom are TPGA contributors or interviewees. It's a lively crew, with a lot to say -- much of which I'm hoping viewers will find reassuring as well as provocative.

Loving Lampposts covers a lot of ground. A lot:

What is autism? 
  • Autism is a triad of impairments: communication, social behavior, and repetitive and stereotyped behaviors, according to Roy Richard Grinker.
  • Autism makes parents fret because it's in the DSM -- it sounds like something is wrong. And no one can say for sure exactly what it is.
  • Autism used to be invisible, now you can find it anywhere. But, again, we still don't know what it is.
Why do parents seek alternative autism treatments?
  • Behaviors are challenging. But give them a label: autism, and they're terrifying.
  • Media treatment is generally hype and horror.
  • Parents initially think, "There must be a way that I can fix this!"
  • DAN! doctors such as Kenneth Bock and James Neubrander consider autism a medical, not a psychiatric diagnosis. Their therapies are not sanctioned by mainstream science -- but if you're a parent, they give you something you can do about your child's autism.
  • Alternative treatments often result in placebo effects. Parents really really want their children to improve, so they think they do. 
Is there an autism epidemic?
  • There's no such thing as a genetic epidemic.
  • Autism is not fatal. So why do people see autism, which is not contagious, as part of a medical crisis and epidemic?
  • Where are all the adults with autism? They're here already. We're primed to see autism more than ever before, but autistics have always been here.
Autism and vaccines
  • Parents really believe there's a link. Jenny McCarthy talks about parents being pressured into giving their kids lots of shots and not listening to their instincts. But she is not talking about real science, or evidence. She making recommendations based on how she feels.
  • The symptoms of mercury poisoning do not match those of autism (microcephaly in the former, tendency towards noggins of unusual size in the latter).
  • With flawed studies like Andrew Wakefield's and accusations of vaccine researchers being "pharma shills," Paul Offit says the funding is irrelevant -- what matters is the strength and reproducibility of the studies.
  • Omnibus Autism proceedings: the court ruled that there was no link between autism and vaccines, and that the experts who testified against the vaccines were "unsound" and "unpersuasive."
  • The families who believe in an autism-vaccine link are not going to have their minds changed by a court ruling. But is is clear that vaccines have not caused an autism epidemic.
  • Parent and writer Paul Collins says, "The appeal of a vaccine explanation is the same one that compels people to be interested in a murder mystery, which is that there's a direct cause. You have to figure out who done it. The complex explanations are a lot less satisfying. We want to say that's the moment it happened, and that's who did it."
Autism Acceptance and Understanding: Neurodiversity
  • What we're really talking about is how we think about our children. It's clear to the director that the medical model of autism [the DAN! model] twists that thinking, makes us only accept as successful behaviors that are "normal."
  • For a person with a disability, you just have to stop thinking about normal. Teach skills that help,  not skills that make them appear typical.
  • Everything that a child with autism does, they do for a reason. We may not be smart enough to figure out what the reason is, but we should at least try. It's not random.
  • Acceptance of an autism diagnosis is an active, not a passive understanding.
  • Acceptance isn't about giving up, it's about understanding how your child sees the world -- that is neurodiversity.
  • David Kirby disparages neurodiversity, equates it to the way "homosexuals feel they are just different" too -- claims that neurodiversity is championed by "high functioning" autistics, and questions whether those advocates have the same disease as the children he writes about. He needs to watch the rest of this film.
  • As Dora Raymaker asserts via fluid and nimble AAC communication, it is important to understand that difficulty in thinking and difficulty in speaking are not always paired.
  • High functioning vs. low functioning autism -- does it even matter? What difference does the distinction make for day-to-day living?
Our community needs Loving Lampposts, needs its forthrightly positivity-drenched testimonials to the differences that define us all. I'm so grateful it's finally here. And I hope every person who sees it takes the words of interviewee Stephen Shore to heart: "The potential of those of us with autism is like anyone else's: Unlimited."

Monday, March 28, 2011

Hi-Fi Pseudo-Sci, Occupational Therapy, and Making Some Lemonade

Adam J. Slagell
Science-Based Parenting

Being involved parents of an autistic child, my wife and I go to many different groups and meet lots of other parents of children with PDD (Persistent Developmental Delay) or ASD (Autism Spectrum Disorder). I am used to the barrage of pseudoscience and misinformation from well-meaning parents (e.g, anti-vaccination, chelation, gluten-free diets, etc), but I have always expected that professional Occupational Therapists (OTs) would steer us towards evidence-based treatments. They have certainly been critical of many of the common autism myths, like the vaccines and autism non-connection. Unfortunately, my expectations were overly ambitious, and I let my skeptical guard down.

Our older son is very sensitive to loud noises and gets upset quite easily. He seems to have a lot of sensory issues both tactile and auditory, and addressing sensory issues is a large part of what his OT therapies work to alleviate. Our OTs recommended that we try some Therapeutic Listening® therapy, which plays somewhat dissonant synthesized music that sounds like back-masked music rapidly oscillating in volume. I was a bit skeptical, but we tried it anyway because:
  1. they lent us the special headphones and CDs,
  2. I didn’t think it would hurt,
  3. I didn’t have the time or expertise to look into the research, and
  4. multiple OTs told us to try it.
Besides, it seemed a bit plausible that people sensitive to noise could be desensitized by listening to something dissonant and random on a regular basis, and we are REALLY struggling with these noise sensitivity issues at home.

It wasn’t until my 5-year-old broke these rather unremarkable Therapeutic Listening® headphones and we needed to replace them that I took some time to look into this. These headphones, with the construction and sound quality of a $30-50 pair, are sold for a whopping $145! They are one of only two approved headphones for this program, and they seem to only be sold through one place, Vital Sounds.

Being a bit of an audiophile before kids, I looked into the specifications and features to see what made them special. Of course they advertise meaningless features like “BioNetic design”, and other things that are wholly unimpressive like “9.8-foot single-sided OFC (oxygen-free copper) cable” and “Supra-aural, semi-open aire design”. The only thing that is somewhat unique is that they have a frequency range of (18-30,000 Hz), whereas most headphones stop at 20,000-22,000 Hz on the upper end. Since humans can’t hear above 20,000 Hz normally (nor can CDs play sounds above that frequency), this isn’t such a remarkable feature to go up to 30,000 Hz. In fact, Sennheiser made almost the exact same headphones for about $50 with a 14-21,000 Hz range, (quite suitable for humans), which does not have the 150 Ohm impedance that makes them useless on portable devices.

Being annoyed at having to pay $145 for headphones that are worse in many ways (except that dogs may be able to appreciate them more) than my $50 Sony headphones, I dug a little deeper, where the non-sense only grew.

You find some web sites saying you can’t even copy the CDs and have to play off the originals. It is said that this is about sound quality, but the writer obviously lacks an understanding of what it means to copy digital information. However, I could see an incentive from the company that sells these CDs for $60 a pop to propagate such a myth. Needless to say, giving little children original CDs is a bad idea. Of course, you can buy their lossless encoded versions on SD cards that can be used by certain music players at a premium, but they warn against ripping CDs to your own players because any compression could make them ineffective (regardless of whatever other magic is used to get 30,000 Hz sounds recorded onto a CD). Considering the open air design of the headphones and the fact that you are supposed to do listening therapy while performing other tasks, I would challenge anyone to tell the difference between even highly compressed mp3s and lossless encodings. This says nothing of higher quality, lower compression formats like 256kbs ACC.

The more and more I read, it just sounded like a couple of companies want to sell overpriced CDs and headphones, by controlling the distribution of “approved” devices for their therapy. A further red light was the range of things this therapy was claimed to help, such as, “improved bowel and bladder function". More troubling, many of the sites promoting this therapy promote other quack therapies and misinformation to parents of autistic children with a strong emphasis on anecdotes and personal experience. All of this made me wonder about effectiveness of this “scientific” therapy in the first place, setting aside the over-priced hardware and non-sense about audio electronics.

The best, and one of the only sources of skeptical information, I found was at a blog called Autism Street (see links at the bottom of the post). It is there that I learned that there have been Cochrane reviews and other meta-analyses of this whole field of therapy for autistic children, reviews which find no support for the claims of the companies selling these, or the OTs promoting them. Sadly, the best support I found for the therapy was a student paper that basically acknowledged all these issues, but argued that we can’t rule out that there isn’t some effect on a special subgroup and lamely argued that more research is needed.

Needless to say, I am frustrated that tax dollars pay for this pseudoscience and disappointed in what I have discovered about some Occupational Therapy modalities. But I learned several things, and I can make some lemonade from these lemons.

  1. Pseudoscience can cost you money, even when you never expect it to. Sometimes “just trying” something will hurt. For example, your child could break the over-priced pseudoscientific contraption at the chiropractor’s office. This is irrespective of the fact that most times you cannot “just try” something to reliably infer that it “works” in any sort of controlled and unbiased way.
  2. This whole thing reminded me, in a personal way, that a therapist does not a scientist (or even critical thinker) make. Our OTs are great people, but it seems like their field is infiltrated by a fair amount of non-sense. So I don’t really know what to believe from them anymore, and I certainly dismiss the less plausible things they say even more readily now. This should have been no surprise, as we see this in many other health care fields. Nurses have therapeutic touch, and OTs have Therapeutic Listening®. I was talking to a good friend who is a physical therapist, and he was telling me how he is endlessly fighting against crazier non-sense infiltrating his field on an almost daily basis.
  3. Our experience with Therapeutic Listening® made me realize how much it helps to share these things, and that there is something that even I can do. This whole event has caused me to gather my thoughts, think about the problem and engage in skeptical activism as a new blogger at Science-based Parenting. My hope is that others can learn from my mistakes, and maybe, just maybe, someone will find this blog entry when they are investigating this dodgy therapy.
  4. I learned that Sennheiser has a really nice guy working in the parts department who is sending me a free part to fix the headphones.

A version of this post was published previously at Science-Based Parenting


Cochrane Reviews
  • Sinha Y, Silove N, Williams K, Hayen A. Auditory integration training and other sound therapies for autism spectrum disorders. Cochrane Database of Systematic Reviews 2004, Issue 1. Art. No.: CD003681. DOI: 10.1002/14651858.CD003681.pub2

Autism Street posts on auditory therapies
Christopher J. Alterio, Dr.OT, OTR. at ABC Therapeutics Occupational Therapy Weblog on auditory therapies

American Academy of Pediatrics (AAP)

Friday, March 25, 2011

Reading for Answers

Sarah MacLeod
quarksandquirks.wordpress.com
findingmygrounduu.wordpress.com

My younger son had a rocky start, with a changing set of labels. At two months, it was colic. At 12 months, he was a “fussy baby.” By four, hypontonicity, sensory processing disorder, convergence disorder, and possible PPD-NOS entered the scene. At six, a psychologist evaluated his cognitive skills and "profound giftedness" joined the party. At nine, he returned to the psychologist for treatment for anxiety and tantrums. Recently, at the end of three frustrating months, the psychologist added Asperger's syndrome to the list.

We -- his father and I -- had known for years that he was an unusual child. From the start, I scoured bookstores and libraries, searching for answers to or at least a name for what made my younger son so uncomfortable in the world. The answers had to be somewhere in print, I figured.

My bookshelf, computer, library card, and I knew -- or at least strongly suspected -- the Asperger's syndrome for several years before his official diagnosis. I knew then, and I know now, that there's no single book that will help my son with Asperger's syndrome relate with the world with ease and comfort, yet I search. I read websites, blogs, research papers, and books. Lots of books. Books from the library, PaperBackSwap, and my local book store. There are so many books out there on Autistic Spectrum Disorders (ASD), an umbrella term including Asperger's syndrome. Many are written for parents with children far more affected than my younger, but the number on high functioning autism and Asperger's syndrome is impressive, if not downright overwhelming. I'll not claim to have read of all those in the second, somewhat smaller category, but I will share what I've found to be helpful for me. Some I've owned for a number of years, long before my son's official diagnosis. The books I’ve acquired and borrowed chronicle his road to diagnosis, both the unofficial point I knew it was Asperger's and the official moment the psychologist saw what his father and I had known for years.

After exhausting the general baby/parenting section of books (by age 3, for my younger guy), I headed toward the special needs section. The Out of Sync Child, by Carol Krenowitz, one of the first books written on the sensory processing disorder for the layperson. Sensory processing disorder was new to me, and Krenowitz’s descriptions helped me make connections that led me to understand we were in for a different parenting and family experience than we’d bargained for, and, as I’d suspected, not simply a “fussy baby”. There was relief in the revelation that there were other kids like him, and Krenowitz’s book, as well as her follow-up, The Out-Of Sync-Child Has Fun, gave concrete guidance for helping my son become a bit more comfortable in his own skin. I've not looked back to the "Parenting Neurotypical Children" section first. (Okay, I've never seen it called that, but it seems to largely be written for parents with children who, well, aren't like mine.)

My first foray into ASD-specific literature was Deirdre Lovecky's Different Minds: Gifted Children with ADHD, Asperger Syndrome, and Other Learning Deficits. This weighty and well-footnoted tome explores the differences between gifted children with ADHD and ASD and their more typical academically wired counterpoints, while also exploring the variances between the gifted child without ADHD and ASD and those with. While more descriptive than prescriptive, Lovecky's book opened my eyes to the challenges that my kids faced. Each chapter does include some ideas for assisting these twice-exceptional, or 2e kids, as they're known on list serves and circles of families who have children with intellectual gifts and learning disabilities. I've returned to this book many times over the years, each time coming away with a kernel or so to chew on, often one that deepens my understanding of a trait one or the other of my boys exhibits.

I started reading The Complete Guide to Asperger's Syndrome by Tony Attwood a few years before my younger son's official diagnosis. Like Different Minds, Attwood's Guide is a lengthy read with 22 pages of references at the end. His exhaustive descriptions of the Asperger’s mind left me with little doubt that, despite the lack of definitive diagnosis, Asperger's syndrome was the best fit for my younger guy. Attwood offers plenty of resources for families of children with AS and a fair amount of advice while maintaining a positive tone about the diagnosis. Not a sappy, "Isn't your child's neurodiversity such a joy?' sort of pap, but a more matter-of-fact look at AS, treating it as difference requiring assistance for comfort in life, rather than disorder to be cured. I am science-oriented: the citations and research are robust enough to meet my tests of credibility.

My next purchase was Knowing Yourself, Knowing Others, by Barbara Cooper and Nancy Widdows. Subtitled, "A Workbook for Children with Asperger's Disorder, Nonverbal Learning Disorder, and Other Social-Skill Problems," I bought the book in hopes of sparking some self-and-other awareness for my then six-year-old (still with no diagnosis except possible PDD-NOS). We completed just a few of the 40 activities -- collages of faces depicting happy, angry, worried, and anxious were as far as we ventured. Looking back, I can see my son was a bit young and far too unaware of the feelings of himself or others to use the book. Paging through it again today, I can see it as a decent tool for developing social skills for my younger son who is now 9.

A few years later, I found Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns, by Brenda Smith Myles and Jack Southwick. To me, the highlight of this book is the description of the rage cycle along with suggestions for assisting kids during the rumbling, rage, and recovery stages. A light went on when reading through this short, focused book: my son's ever-increasing tantrums made more sense, and when NOT to talk to him became more important than WHAT to say to him just before, during, and after these rages. Myles and Southwick didn't make the rages go away, but at least I found some relief in knowing that my prior attempts hadn't worked simply because his wiring made my usual tantrum-coping techniques not only useless but often inflammatory. I wish I could say I manage to always refrain from trying to teach my son when he's rumbling, raging, or recovering (and for a few months, it seemed he was perpetually in one of these stages), but I remain human and overly wordy, even when silence would be a better road.

Fast forward to November 2010. The psychologist who IQ tested him at six and saw him a half dozen times for anxiety in Fall 2010, looked me in the eye after a session with my son and I and said, “He has Asperger’s syndrome.” I'm sure my relief was palpable as I nodded and grinned. Finally, we had a diagnosis. A day later, I was back to the bookstore. This time, my find was a picture book by Kathy Hoopmann: All Cats Have Asperger Syndrome. The day I told him of his diagnosis (which he found as a huge relief, too), I shared the book with him. He demanded a second reading, "to find all the parts that are like me." He then declared it his favorite book (previously held by the Lord of the Rings trilogy) and read it to any family and friends who stopped by. For my feline-crazy Asperger’s child, this book started a dialogue about his way of thinking that continues daily. Thank you, Kathy Hoopmann.

Our next read together was by Kenneth Hall: Aspergers Syndrome, the Universe and Everything. Written by a gifted homeschooling 10-year-old, I'd hoped this book would resonate with my guy. I certainly found similarities between my son and the young author. My son, however, focused on the ways he wasn't like Kenneth. He admitted to similar issues with authority and perfection, but, according to my son, so many details were different -- the author liked to spend time along in his room and loved math, and my son was afraid to be upstairs alone and really didn't care for math. But generalizing from specifics never was his strength, a commonality he shares with others on the autistic spectrum, so I hold no fault with the book on this count. While I found it interesting to hear about Asperger’s syndrome from the point of view of a child of similar age as my own, the book was a bit tedious to read, bearing an uncanny resemblance to talking with my AS son. Go figure.

The most recent addition to our ASD library is another do-together workbook for children with high functioning autism or Asperger’s: Asperger's ... What does it Mean to Me? by Catherine Faherty. Despite fine reviews, I was dubious that the large-print children's section written largely in the first person would appeal to my son, but he took to the format immediately. With no distracting illustrations, straight-forward yet not babyish language, and an uncannily realistic view of the "operating system" of the person with autism, this book became a favorite. We're opening the book a few days a week, looking back on the pages he previously liked and working together on a few new pages. Broken into twelve chapters, this workbook is both descriptive and prescriptive with plenty of room for readers to add their own notes about their experiences with autism. The book broadening understanding about self and others. I'm delighted to learn about my child's view of the world via our exploration of this workbook. Until the sensory section, I didn't know how much looking at rotating objects, patterns, and lights pleased him. Caught in the many smells, textures, and sounds he avoided, I missed what he liked. At the end of each child section is a chapter for adults (in somewhat smaller print) which expands on some of the workbook section ideas and offers concrete suggestions for caregivers.

Our shelves are filled with books of all genres, from ancient history to mystery, from fun with math to how to use a lathe. While some of these genres chronicle the special interests of my younger or learning jags of his older brother or me, our Autism Spectrum Disorder category is the one receiving the most new additions, bought and borrowed, at this point. None hold the answer to greater comfort for him in the world, but each has given me a bit more data, a few more ideas, for helping him toward that ever-shifting goal.

Thursday, March 24, 2011

April Is Autism Story Sharing Month on TPGA

April is Autism Awareness month. And every day during the month of April, TPGA would like to share an autism perspective: yours.

As members of the autism community, we know that awareness is only a first step. Increased awareness brings opportunities to share our experiences and strive for what people with autism deserve: understanding, and acceptance.

If you’d like to participate, please send us a short essay on one thing you want readers to know about autism -- as it relates to you.  Share what you’ve experienced or witnessed. Tell readers about a formative experience; something joyful, or a brief moment of despair. Share your hopes, dreams, past, or future. Anecdotes laced with humor -- however dark though not mean-spirited -- are especially appreciated.

You are welcome to submit a previously published item, or one you’d like to republish elsewhere. And if you feel self-conscious about your writing, please know that we are excellent editors and can help your story shine. In return, please help us increase understanding about the diversity of experiences along the autism spectrum.

Wednesday, March 23, 2011

George Takei on My Mind

Carol Greenburg
aspieadvocate-ascd.blogspot.com

Please forgive the delay in my addressing the horrors of the earthquake/tsunami in Japan, which are linked to me in ways that will become obvious as you read this essay.

I'm diagnosed with Asperger's Syndrome, a type of autism. Although I am verbal and can express myself in writing, one difficulty I have is gaining enough control over strong emotions to communicate them constructively. Like many Aspies, another difficulty for me is obsessiveness. Autism experts call this perseveration which is one of those pathologizing terms used to describe a quality they'd call persistence in non-autistic folks. I'm used to perseverating and hearing myself described as obsessive. Nothing new there. The topic of my hyper-focus in these past two weeks, however, is new to me: I can't stop thinking about George Takei.

George Takei and I actually go way back, though we've never met. I used to edit Star Trek novels for Pocket books. Yeah, I know, what better gig for an autistic chick? I joined the team right after they published Mr. Takei's autobiography; although, I have not met Mr. Takei myself, my then-boss, now-husband who was Executive Editor of the Star Trek novel line has had lunch and traded awful puns with him on several occasions. Like any good geek -- even those of us who geek for a living -- I naturally worship at the altar of Captain Sulu. Yet, unlike many people who know about his activism and admire his post-Star Trek work, I never tried to reach out to him personally. I'm no shrinking violet; normally I wouldn't hesitate to at least write a fan letter, but when it comes to George Takei I'm uncharacteristically shy.

Probably the only thing we have in common other than some Star Trek-related friends is that we both speak Japanese. He's Japanese American, and though many people who share his heritage speak little to no Japanese, Mr. Takei grew up in an environment saturated with that language, so he is fluent.

While I have no family members from or in Japan, like most autistic people, I pursue my special interests with an unmatched fervor. As a child, I knew some families of Japanese business people who commuted from my New York suburban neighborhood, and became fascinated with everything even remotely Japanese. I began teaching myself to speak Japanese when I was twelve. A typically developing child probably would have picked up a few words and that would have been the end of it. I on the other hand, with what I like to call my autistic superpowers, determined to hang in there until I became fluent. With the help of a ratty Japanese/English dictionary that was the only reading material on the subject I could find in the '70s, and the endless patience of Japanese neighbors who let me practice my embryonic skills to my autistic little heart's content, I got partway there.

At sixteen, I gave into the reality that I wouldn't get much further with my obsession unless I moved to Japan. And like every other autistic teen with underdeveloped social skills, I got bullied, so I really didn't see the point of hanging around American high school any longer than absolutely necessary. I began to plot my escape by applying for a Rotary scholarship behind my unsuspecting parents' backs, hoping I'd get sent far away, preferably to study in Japan.

As the rigorous interview process shifted into high gear, I could no longer hide what I was doing from Mom and Dad. The Asperger’s diagnosis was unrecognized at that time, but my folks knew there was no point in trying to talk me out of a goal once I set it, so they shrugged, encouraged me, then stood ready to help mend my broken heart when I lost -- except I won. So I left home at 17, and spent what would have been my last year of high school in a tiny Japanese fishing village nestled among Mandarin orange groves on the shores of the inland sea.

As the one white person in town, I kind of stuck out. I suppose if a Japanese American like George Takei had been sent to Japan for part of his education, as was common practice when he was a child, he might have momentarily fit in better there than I did for obvious reasons -- at least until the Japanese noticed his lack of reticence in expressing his opinions. (Like I said, I don't know the guy, but from what I'm told I can't imagine he was any more hesitant to speak his mind then than he is now.) Although he undoubtedly gets the star treatment he deserves when he visits Japan now, in a different time he might have been treated with disdain.

Of course mere disdain still pales in comparison to the treatment he got here in his home country. As the Japanese proverb says, the nail that sticks out gets hammered. Despite the well-deserved recognition of his artistry, George Takei still suffered the outsider treatment his whole life: raised in an internment camp because of his ancestry; too American for the Japanese, too Japanese for the Americans; forced to hide his sexual orientation for so long; and criticized because of his activism on behalf of both popular and unpopular causes.

But my comparatively trivial status as just a bit of an outsider explained my inability to fit in in the US or Japan, and was entirely predictable. All autistic people are to some extent outsiders wherever they go, so it never occurred to me I'd be accepted readily in Japan. I guess if I had thought it through, I would have seen flaws in my plan. A socially inept uber-individualist like me in such a heterogeneous, conformist society: not such a great idea on the face of it. Looking back, I can't believe things worked out as well as they did; but as it turns out, it was all meant to be.

I was obviously an odd duck, but at the time no one knew autism explained much of my behavior. My hosts quite logically concluded that my strangeness was a result of my American upbringing. Untrue of course. My mother is not autistic. In fact she is much like the descriptions I've heard of Mr. Takei's mother: an uncommonly gracious woman by the most rigorous standards of any culture. I was raised right, but developmentally delayed by autism -- it took me much longer than average to learn the simplest niceties such as greeting people and saying goodbye properly when I entered and left a room. Luckily, when I was finally capable of absorbing basic social skills, I had the privilege of living in the most polite society the world has ever known under the tutelage of people who showered me with amazing kindness.

I quickly reached my goal of becoming fluent in Japanese, as I had hoped, but I learned so many other skills I never even knew existed: that people and their feelings are usually more important than principles, so that sometimes an ounce of diplomacy counts more than a pound of the blunt indiscretion I called honesty. I learned about "Gaman," loosely translated as endurance, a quality I already had in abundance. But true Gaman is so much more than that, to merely survive is admirable, but to do so with grace and consideration for those around you is a higher value.

Most importantly I learned lessons about the fragility of life, not just from the chock-full-of-cherry-blossom essays and poems my Japanese Classics teacher made me memorize, but from earthquake drills, and a 20-foot sea wall a block from my host family's house -- which itself had roll-down metal shutters to fend off typhoons and tsunamis alike. The Japanese understand that all of us are vulnerable to catastrophe, whether natural or created by humans. And that understanding helps foster the attitude of life as precious and irreplaceable.

The Japanese have never denied this vulnerability, they have always faced it with grace, even humor. The survivors of the atomic bombs in Hiroshima and Nagasaki for whom I eventually ended up interpreting are some of the funniest people I know. And perhaps due in part to the many trials he has faced, George Takei's sense of humor is legendary.

He has used that sense of humor to leaven the calm, hopeful, but still urgent message he has been delivering during this painful time in the country of his ancestors. His husband has supported and mirrored this attitude by continuing to deliver disaster relief information even as Mr. Takei himself is doing interviews.

Having worked on behalf of Japanese American interment camp survivors, as well as Japanese atomic bomb survivors, I feel a debt I can't ever fully repay to both groups, My first instinct is to hop on plane to Tokyo. I can't though, which is probably for the best. The Japanese have spent enough energy trying to get me to behave; they don’t have time for my current emotionally overcharged shenanigans. Even my ability as a special education advocate wouldn't serve them now, for I know nothing about special education law in Japan. Although naturally I worry about the disruption in services to children with disabilities that inevitably follow disasters, as a (partial) product of their educational system, I trust they'll provide as much as they can and as quickly as possible.

One challenge my autism poses for me is the constant struggle with Theory of Mind, the notion that other people come from completely different perspectives, that they cannot figure out my feelings or intentions without my explicating them. That leads to all kinds of communication difficulties even for a highly verbal autistic adult like me. Words literally fail me when I’m distressed, as does the ability to remember that not everyone knows what I know, or feels exactly how I feel. So while I understand on an intellectual level Mr. Takei’s beautiful statement that we are all Japanese during this crisis, I’m still emotionally and communicatively delayed, and like so many Aspies and take metaphors too literally.

He’s right that crisis should force people to put aside differences and focus on commonalities, but the rest of me keeps forgetting that, however compassionate, most people are not reacting to this disaster in the same raw, and frankly inappropriate, way I am. Some people don’t have to use every fiber of self-control they have to turn off the TV (24-hour news coverage, I am convinced, was designed to drive autistic people up and down the wall), some aren’t beating themselves up because they can’t remember every classmate’s full name, some aren’t fighting a compulsion to fly across the world and dig through rubble -- getting in the way of the people who actually have expertise in rescue work.

As it so often does, the constant emotional overload of my autism adds to confusion over where other people end and I begin. I understand that unlike the obsession that took me to Japan in the first place, this current obsession helps no one. It just makes me miserable and difficult to live with. So I need something new over which to perseverate. Perhaps I should work on my Gaman, not the endurance part, but the graceful, considerate part that Mr. Takei embodies.

I made a small donation. I'm searching for news of the many people I know who live in Japan. That's about all I can do right now. Most of my effort and money has to be spent on services for my autistic son, who unlike me is severely language delayed. Tenacious fellow that he is, he works harder on learning to speak his native language than I ever did to learn Japanese, and my attention rightfully belongs here with him and children like him, while George Takei continues to devote himself to Japan's relief effort, among other worthy projects. My Japanese and Japanese American friends understand my priorities, I know. Duty to family and community are woven deeply into both of their cultures.

If I do learn to not just appreciate but actually practice Gaman, I might actually get enough of a grip to provide some useful advice to others who wish to help in this crisis. Right now this is the best I can offer: It’s probably a good idea to pour some money, even if you only have a little left over from the autism causes you support, into the Japanese relief effort.  Despite recent economic troubles, Japan is still a fairly wealthy country, so you may think such offers are unnecessary, even insulting to these proud people. I’m not too worried about that possibility myself. The Japanese are nothing if not efficient. Even allowing for chaos and unlikely corruption, I’m pretty sure your donations will get exactly where they need to go at warp speed, especially with helmsman Sulu helping to direct their journey.

If you know anyone living in or visiting Japan, it might also help to type their names and identifying information into Google's excellent crisis response site: http://www.google.com/crisisresponse/japanquake2011.htm. And hard as it may be, this is a good time to wait patiently for whatever information that might yield, with complete understanding that planned rolling blackouts will delay the quick response we wish we could get.

Heaven knows I’ve established my own need to practice Gaman. I welcome you to join me in that effort.

For more information on what you can do to help, please visit www.georgetakei.com.

Tuesday, March 22, 2011

iPads and Autism Resources: Fundraising, Donations, Research, and Education

Shannon Des Roches Rosa
www.thinkingautismguide.com
www.squidalicious.com
www.blogher.com

Leo playing Swapsies
While so many of us are waiting for our iPad2s, many (too many) kids with autism and other special needs are waiting to get any iPad -- any iPad at all. Families who want to buy iPads privately often don't have the means (these devices are expensive!), and school districts and insurance companies often cite the lack of longitudinal studies supporting the effectiveness of iDevices in special education.


To address both areas, I've been updating our iPad Apps for Autism spreadsheet with links to iPad Fundraising & Donations, as well as Research & Education links. I've pasted in the current listings below, but will be updating and expanding the list as more resources come in -- or are brought to my attention (hint, hint).

If you want to help a child get an iPad, look through the Fundraising & Donations section for ideas on agencies that are donating iPads to kids in need, or for instructions on how to run your own fundraiser (another hint: fundraising is really easy).

If you are hitting roadblocks with insurance companies or school districts that want official research to justify getting a child an iPad, look through the Research and Education links. Though, as I've said before -- the irony in Leo's case is that he probably wouldn't have qualified for an iPad as an AAC device, since he speaks "fluent requesting" -- yet his iPad has improved not just the quality of his learning but increased his learning opportunities -- he can learn anywhere he can take his iPad

If you'd like to help out a specific children in need of iPads, consider donating to:
I'm very proud of SEPTAR, the local Special Ed PTA co-editor Jen Myers and I helped co-found  -- because of our own successful fundraising, we were recently able to  donate ten iPads to our district's Special Ed department! We're doing real good and making a real difference on a local but district-wide level -- more reasons to consider starting a Special ED PTA in your own area.

iPad Resources - Fundraising and Donations
iPad Resources - Research & Education
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This article was previously published at www.squidalicious.com.

Monday, March 21, 2011

An Interview with Dr. Robert Goldberg, PhD, Author of Tabloid Medicine

I got a chance to talk with Dr. Robert Goldberg PhD about his new book “Tabloid Medicine.” In it he breaks apart the formula for Tabloid Medicine: change the terminology to fit your agenda, create an instant expert, play the little guy against the big guy, proliferate bad information, then find a celebrity to lead the charge. Voila! Your very own epidemic-I make light, but this book doesn't, since it's not really a funny topic. We spoke of how he came to the topic as a parent, when his own daughter struggled with misinformation in the media, but continued, fueled by the tragedy that with so much good the internet could be doing, it was being hijacked” by the likes of Andrew Wakefield, Jenny McCarthy, David Healy, Sidney Wolfe MD, and Barbara Loe Fisher. Passionate about the subject, and well-grounded by facts, Dr. Goldberg answered a few questions for me.


This book focuses on a few things including a sort of downfall of science journalism and the public’s thirst for celebrity endorsements of cure and disease. How do we change the way the public gets their science? Do we go to scientists? to the schools of journalism?

I think you have to go after the scientists because they’re more likely to step up and speak out than the journalists are to change the narrative, (which they’re comfortable with). They are more concerned with “That PR firm spoke with this company…and a drug company...is that conflict of interest?”

Isn’t exposing conflicts of interest is a good thing?

But it goes overboard. Private business and government, universities, working together, that’s where we will continue to get great science; not everything is a conspiracy. [This is the journalist's] narrative: Large drug companies use their relationships with doctors and researchers to overstate the benefits and hide the dangers of products which ultimately wind up maiming our kids. It’s really hard for them to not only get off that narrative but they’re so focused on that storyline that they lose, or they ignore, more important, other important biases and agendas.

The solution there is: you cannot rely upon the journalists to communicate science anymore. We have to rely upon each other to come up with a better way of sharing that information to improve health or to help us make health decisions.

Do we ask the scientists to change? I’ve seen some scientists who were not able to communicate their information very well.

Well, some of it is so regulated, the drug companies, for example, are very limited in what they can say, and they are so worried about stirring up the ire, antagonizing anti-vaccine parents, that they say nothing, and scientists have always had a hard time communicating information.

There’s a lot of regulated speech, but what about the fact that Andrew Wakefield can go out and say whatever he wants...

Without repercussion?

But it does have a repercussion, it does have an impact on the health of kids. I was just looking at the CDC numbers, today, about life expectancy, and they’re all pretty good, except one area jumps out: suicide rates are going up. And suicide rates going up because what Wakefield did with vaccines, David Healy and other people have done on anti-depressants. Kids are not getting treated. It’s very, very disturbing.

That is the result of how scientists that were able to speak out of school for the sake of generating headlines were able to make their case. That’s “impactful speech”, and it’s hard in a free society to say to somebody, “Well, you can’t say that.”

You wrote in a column in January “Wakefield wannabes now overrun scientific discourse and dominate medical journals and shape public perception of the value of medical innovation.” I hate to give him more air time, but how much damage do you think Wakefields misinformation has wreaked on the autism community, and how far behind are we in researching the etiology of autism?

I think we’ve wasted a decade. We’ve wasted a decade because people poured their resources and time into trying to prove that vaccines don’t cause autism. We wasted time and effort disproving that the DAN diet and all this other stuff works.

We have neutralized the ability of the CDC and other organizations to focus on immunizing kids because we’ve allowed people like Barbara Loe Fisher on to advisory panels. You want to talk about human rights in the world? It’s like appointing Libya to be head of the human rights council. So we really have paid a price by allowing scientific discourse to be compromised by the people that want to see [science] as their enemy.

HIV is a great example [of this]. First of all, what if we had worried so much about the side effects of HIV drugs? We wouldn’t be as far as we are. What if we put the same amount of scrutiny, and distrust as they did in vaccines? How many more cases of infectious HIV would we have if those people had banded together and gotten a celebrity leader?

And what if in the HIV community there was resistance to taking the medicines because people said there’s no such thing as HIV or that HIV was caused by something else [as was the case with autism] it would have had the same effect. Now we’re seeing an increase teen suicide. It all has a measurable impact.

And there’s Sidney Wolfe, MD, of the Public Citizen: over the last 30 years [he] has said that everything other than insulin was dangerous to use including Metformin, which is now the additional drug of choice for most people that need to control their insulin levels. If we had listened to him, a lot of people...the death rate from diabetes wouldn’t be going down as it is.

How is that we will turn the tide, where people respect science, and think critically?

Certainly we have to change our mindset. People who are involved in science and care about science are going to have be more active in defending it. So it’s going to have to take all of us really.
I’ve spoken with doctors… and someone else said this, but patients are already on the internet so now we’re just waiting for the doctors and scientists to be there.

Do you think we’ve changed the way we interact with our doctors? I know I tend to look everything up, then go confer with my doctor.

There are those people, including myself, who go on the internet to try to figure out what’s going on, en route to making a diagnosis, actually going to a doctor and getting a diagnosis, and I don’t think there’s any real problem with that. And then there’s people who are sort of looking to figure out what they should be scared of and want to treat that. Then there are people with their own diseases who use the internet to find experts or clinical trials to give them a fighting chance.

It has transformed the way in which we perceive our health. At the end of the day, all those behaviors can be summed up: we want to know--and we can’t see our physicians 24/7. It’s an easy, accessible way to comfort, to resolve questions.

In the book, Dr. Goldberg lays out the formula that Tabloid Medicine uses to create uncertainty and hype. I asked him and how we might be able to avoid some of these traps. Is there a way to identify them easily along the way? He gave me some “Rules of the Road”
  • Examine the website carefully, is it linking to good data? Is it linking to recent science? Some of the anti-vaccine websites link to articles that are more than 30 years old.
  • If you see a sensationalized story being recycled on a website that’s supposed to help you make a health decision, it’s not a good site.
  • If there are third parties, or they want to lead you to another site to encourage you to sue or be sold something, chances are, it is not legit. 
  • If there’s a lot of “well, you can have this great information, but first you need to join and be a member.” Be wary. “They should be helping. There should be transparency. There shouldn’t be a barrier to a parent getting good information about autism.”
  • And of course, if they offer a cure it’s too good to be true.
And there are three things people need to do to personalize the health care experience, and allow science to take a hold again.
  • Participate in well-run online chats about diseases
  • Seek out second opinions using tools on the internet
  • And down the road, patients and families will be able to organize and register for clinical trials on their own. 
Do you think that’s a good place for these grassroots communities to start? How do you feel about community driven databases?

It has to come from below…we need to find a way that this information can be shared faster. In fact. I think with natural language processing and data mining tools, there’s a lot of information we can generate based upon that data. We can find out a lot sooner from people how they’re feeling with certain drugs, and why they aren’t working. Overlaying that discourse with demographic information and clinical markers we can figure out, for example, if a drug or a product or modality is effective.

You talk about “biomarkers.” One of the easiest, most recognizable biomarkers is metabolism? Wouldn’t that be an easy one to test?

Yes, we should be testing that. Parents of children with autism should be demanding that gene testing be a routine part of their entry to treatment…

So we can start that database?

Yes! A lot of times metabolic response is correlated with real markers of disease which is what we want to get to …even differential responses to products within the same diagnosis. We can find out faster why it works for some and not others.

We know insurance companies don’t like to pay for anything, but if every kid diagnosed with autism suddenly got a genetic screen to put that information into a database, would it bring the price down? The only time we’ve done any genetic testing we practically begged for it or we went through a study at the University.

Well, it’s only a one time thing, then that data carries with you. Metabolic testing through Navigenics or 23andMe, their total cost is probably about $200 a person. Then if you had a lab core do to all the blood work and the assays. You would still have to make it so they can make money…and we don’t want the CDC to do it because it will never happen, but there’s no reason why parents couldn’t organize themselves into clinical studies.

Have you thought about joining forces with Paul Offit, and Seth Mnookin? I’ve really enjoyed reading each of your books. I met Seth a few weeks ago.

Yes, jokingly I thought we’d call it the “The Sanity Tour.” But we have talked, and one goal is to create a social media program/website that will aggregate information… and we want to come up with other projects and information, possibly a film.

So unlike some of those “other sites”, a more science- and evidence- based website?

And even more than that. Because we want to develop [tools] that parents could use to track not only immunizations, but other kinds of things that would allow parents to get control over the behavioral components of treating disease.

I don’t need to tell you, but if you have a kid that is really sick, or has an unknown thing going on, or autism, you’re looking for ways to keep your world predictable and moving forward. We want to help do that.

So when you look at what’s going to bring us back around to science, and “moving forward” with our own families?

Parents need an online community in the absence of information or scientific data, the online support is very important. Being a caretaker, and I don’t have to tell you this, is very hard work, and parents need that kind of support. It’s important to reach out to these communities and see how they can participate. Parents need to feel involved.

Community, shared information, the collective knowledge from those two interactions and then being very proactive standing up for science.

Listen, right now we need to “flood the zone.” Right now the zone about vaccines and autism is controlled by the most extreme and sometimes most violent elements. We need to flood the zone and increase the number of people and conversations that are more productive and science based.




Dr. Robert Goldberg is co-founder and vice president of the Center for Medicine in the Public Interest, a “nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness.”

Friday, March 18, 2011

Processing Grief After a Child’s ASD Diagnosis

Sharon Morris
sharon-theawfultruth.blogspot.com

I’m a new arrival to Planet ASD. I use this analogy deliberately as it does feel as though I have stepped through, or fallen into, a wormhole opening to another universe. I wonder where all these research papers, all these treatment models, all these parents and children, and their courageous stories have been. Where have they been hiding? How was I so blind to this ever-expanding ASD community apparently living right under my nose? Sure, I’d heard of autism. Though I hadn’t  given it a lot of thought.  And when it had crossed my mind in years past I considered the possibility of an autistic child with ignorant terror.

Now I am a new, life member of the autism community. Prior to Harri’s ASD diagnosis two weeks before his second birthday my mummy mantra was ‘This too shall pass.’  This idea was a lifeline during his incredibly difficult baby years. Now that saying no longer applies. Autism is a journey of a life time.

So while I am still in the process of coming to terms with my little boys diagnosis I thought it may be timely to reflect on grief and the process of recovery. And just as importantly, offer a challenge to those who may find themselves stuck in their grief cycle, unable to move forward into a more productive head space.

There are as many journeys to the diagnosis of Autism as there are ASD people.  Consequently there are as many responses. Though one theme seems to recur in autobiographies and ASD chat forums, magazine articles and the like: that is a grief reaction. For many it is the despair that comes with recognising your child has a life-long disability, and what that means for both child, and those responsible for their day to day care. There is fear  your beloved offspring may never be able to make and maintain meaningful friendships, live independently, be able to stand up to inevitable bullying in the playground. There is so much to feed anxiety and worry after receiving the ASD news. It is understandable then that so many parents pass through a stage of inconsolable pain, a terrible sense of loss, and even denial. For some there may even be shame.  It is not unusual for these feelings to be compounded by thoughtless comments from friends and family.

It is little wonder that some parents will be unable to overcome this mourning phase. Caught up in a negative spiral of sorrow and anxiety which is often coupled with social isolation due to difficult public behaviours by the child, parents can become ‘stuck.’  One cannot deny an element of self pity is difficult to avoid, and for many there is the question of ‘why me’? Why my child?

In response to the question of why me, my thought is, why not? Why would I presume to be entitled to escape the challenges life throws up. When thousands of children are diagnosed with serious illness and disability each week worldwide, how could I insist on immunity?

I don’t want to judge others and how they respond to their child’s diagnosis.  What I do want to share is what I have found helpful so far. And perhaps as a consequence offer an alternative to parents who are struggling to move beyond despair.  And perhaps also help parents avoid some of the pitfalls that can come with the inability to find acceptance.

My first instinct was to read, read, read. I have an insatiable need to understand the Autist’s  perspective, to know what research shows about responses and outcomes to differing treatment models, to avail myself of a realistic short and long term perspective of what my sons life may look like into the future. I know for many others reading is time consuming, or difficult. For those people  I would suggest going to the best known sources on line. They have done all the hard work already by casting a critical eye over claims, theories and crackpots, and you can get a short cut to good information. If you are unsure about theories and therapies being offered there are sites such as quackwatch.com you can check. They have a particular section for Autism.

I have found of particular value books by parents who are currently living with one or more ASD children. Try George and Sam by Charlotte Moore. She has two sons with Autism, is a single mother and manages to write. She is a real inspiration as there is not a skerrick of self pity in her story.

I read autobiographies, websites, and articles written by those on the ASD spectrum. You will often be enlightened and inspired by their stories. Start with Don’t Mourn For Us by Jim Sinclair. It’s a short essay that may change your perspective as it did mine.

Get involved in your childs therapy. It will give you an opportunity to take ownership over your childs progress and learn enough to ask the right questions as you go along. Consider intentional exclusion of parents in participation of therapy by a service provider as a red flag.

I found support groups online. There are also local community services. There are many blogs, chat forums and support groups all over the world for parents of ASD children. Be wary though. There are also groups out there that may try to take advantage of people who are desperate for help. Always be wary of anyone offering a ‘cure.’ As a parent of an ASD child and a Doctor, Michael Fitzpatrick writes in his book Defeating Autism: A Damaging Delusion parents that are struggling to come to terms with their child’s diagnosis may be vulnerable to the ‘snake oil’ being peddled by those promising a cure. He argues that denial of a child's disability can lead to parents chasing miracles, and spending enormous amounts of money unecessarily in the process.

Finally, I don’t want to appear harsh or critical of those who are struggling to remove the grip of grief from their lives. I understand the hurt, as this is still raw for me also. Tears have fallen while writing this. But if my child's best interests is truly my primary focus I will refuse to wallow. I will grant myself permission to have sad days. But I will not allow my sadness to compromise my ability to ensure my son's future happiness.

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This article was written at the very start of my ASD journey. Before I had been introduced to the controversy surrounding the term "disabled" in relation to those on the spectrum. My position has changed over time and is addressed on my blog at the post When Is a Disorder Not a Disorder.

Monday, March 14, 2011

Takeaways From The 10th Annual UCSF Developmental Disabilities Conference

Shannon Des Roches Rosa
www.thinkingautismguide.com
www.squidalicious.com

I had the good fortune to speak at at well as attend last week's UCSF Developmental Disabilities Conference, thanks to the networking wizardry of TPGA contributor Laura Shumaker. It was an experience for which I am profoundly grateful -- it exemplified The Thinking Person's Guide to Autism's mission of bringing together parents, professionals, and adults with autism so we can learn from each other, so our community can become stronger and more effective. Though the conference covered more than autism, I am going to focus on a few autism-related takeaways.

iPads and Autism
Danielle Samson, MA CCC-SLP and Shannon Des Roches Rosa, MA

My talk with crackerjack SLP Danielle Samson opened the conference. Danielle covered autism, iPads, and AAC devices from the professional's perspective, followed by my perspectives as an autism parent, community member, and former educational software producer. It was on most points a condensed version of the talk Danielle and I gave in January, at Via Services in Cupertino:
  • iPads can be a game-changer for kids with autism. This was underscored by playing the autism section of a recent Apple iPad video featuring a very cute ten-year-old boy (starts at 3:50).
  • iPads aren't for everyone. It's important to do an AAC evaluation to see if the device is compatible with your child's needs and abilities. The SETT framework is a helpful resource.
  • It's important to try out an iPad before buying one. If you don't know someone who has one, call an Apple store and ask when their slow times are, and bring your child by then. And it doesn't hurt to ask if the store will let you come in 15 minutes early, before other customers arrive.
  • Anecdotal information about the wonders of iPads is great, but until we have research and evidence backing up iPads for education and as AAC devices, school districts are unlikely to fund them. But research is emerging, such as the study Learning: Is there an app for that? by Cynthia Chiong & Carly Shuler.      
  • Buying a 3G iPad doesn't commit you to the network -- it gives you the option to buy the subscription by month, which is a nice backup if you intend to do any traveling. The wifi still works, of course.
  • Safety/Monitoring: Make sure you're familiar with the Restrictions options in your iPad's Settings, so you can hide YouTube and Safari if need be, and turn off the Delete Apps function -- I know Leo has certainly accidentally deleted an app or two (thankfully, I had them backed up on my computer).
  • Get as much iPad storage as you can. Leo's 16 GB iPad filled up long ago, mostly due to movies -- but as apps continue to grow in size (e.g., The Elements is 1.71 GB) and since the iPad2's camera records video, storage can be an issue for many of our families.
  • For recommended autism apps, including links to other resources and research, see the iPad Apps for Autism spreadsheet I maintain with Jordan Sadler SLP and Corina Becker.

Various Perspectives on the Diagnosis of Autism
Barbara Bennett, MD; Fawzia Ashar, MD; Gary Blank, PhD

My primary takeaway was that doctors and researchers see "autisms" rather than autism, and that there are a variety of autism phenotypes. Well, yeah -- that is evident to me from the sample of TPGA editors & their families. More points from the talk:
  • We need to diagnose autism because services and interventions follow that diagnosis.
  • Infant sibling studies are important. They help with earlier diagnoses, which in turn helps with earlier intervention and better outcomes.
  • We need to move away from the "Lack" or "Deficit" model, and focus on supports.  
  • An adaptive evaluation needs to accompany all autism diagnoses, and treatment plans really need to focus on adaptive living.
  • The main question with autism should always be: How do we improve quality of life and quality of family life?
  • Autism stakeholders, especially Asperger's stakeholders, need to keep on top of the DSM-5 criteria as they evolve, and remember that the DSM is not set in concrete.

Nothing About Us Without Us: Partnering With Autistic Adults to Improve Healthcare
Dora Raymaker MS

Listening to Dora give her talk was a delight -- mostly because I love being around other women who are openly, unrepentantly geeky. But her subject was serious business despite her light tone.
  • Dora spoke about CBPR, Community-Based Participatory Research.
  • AASPIRE is the Academic Autistic Spectrum Partnership in Research and Education. Dora is a co-founder.  
  • Part of AASPIRE's mission is to encourage the inclusion of people on the autistic spectrum in matters which directly affect them, and to include adults on the autism spectrum as equal partners in research about autism.
  • Health care providers should be open to accommodations and strategies that may improve interactions with autistic patients, and thereby positively impact health outcomes.
  • For more information and to get involved, visit AASPIRE's Healthcare Study 1 project page.

Making a Difference Through Prevention
Surgeon General Regina Benjamin MD, MBA

Surgeon General Dr. Regina Benjamin
Dr. Benjamin was as impressive as she was likable -- quite the combination. Her primary message: we should never forget that one vocal person standing up for their beliefs can make a difference.
  • President Obama is trying to help states provide grants to help support people with developmental disabilities with independent living. This is being added to the budget even as other items are being taken away.
  • Doctors can take care of a lot, but their prescription pads can't care of:
    • Adequate housing
    • Employment
    • Clean water
    • Learning disabilities
  • Health care needs to be about eliminating health disparities.
  • Prevention is the foundation of her work -- on focusing on what we can do, not on what we can't do. This includes government health initiatives like Michelle Obama's Let's Move program.
  • She considers mental health to be as big an issue as any other health issue like blood pressure, etc. She has seen first hand the devastating effects of mental health crises, depression, etc. on the Gulf Coast after Hurricane Katrina.
The other speakers were terrific, and I'm hoping to interview Clarissa Kripke, MD, for TPGA in the near future. I hope these summaries communicate the breadth of topics covered, and how inspiring and informative conferences can be.

    Friday, March 11, 2011

    Emergency Evacuation Should Be Part of the IEP

    Charles P. Fox
    specialedlaw.blogs.com

    Note from the editors for readers from outside of the United States: In the US, educational rights for students with disabilities are covered by the federal Individuals with Disabilities Education Act (IDEA). IDEA requires that each student covered under IDEA must have an Individual Educational Plan (IEP). Another piece of legislation, the Americans with Disabilities Act (ADA) also has educational implications. The particular section that refers to education is Section 504; accommodations and modifications for students with disabilities covered under ADA is commonly referred to as "a 504 plan".

    Further comments from the editors: This post had been planned for some time. As we were preparing this post for publication, Japan experienced a 8.8+ earthquake. In addition to the earthquake destruction, many areas of Japan's coast were hit with tsunamis, with further destruction and loss of life. At this time (03/11/11, 12:02 am, Pacific Standard Time) the entire Pacific Basin is on tsunami watch. Earlier in the week, a commemoration of a 1908 catastrophic school fire was published at the blog Making Light: The Lakewood School Fire. 172 children and two adults died, because there was no evacuation plan and no fire drills had ever been held.

    In the context of yesterday's events and of the events of 1908, we publish today's post--for parents and for special education professionals. We all need to plan for our students in the event of an emergency -- natural or otherwise.

    One of the most overlooked parts of an IEP is what happens in the event of a fire or natural catastrophe and students need to be evacuated from school building. For me personally, the thought is always an issue of accessibility but that is not the only issue. Some time ago, I represented a child in a Early Childhood program who had a terrible fright reaction associated with loud noises, and fire alarms certainly fell into that category. According to her mother she could run and hide when faced with loud noises, and could very hard to find or even run out of the building; both situations present obvious and extreme dangers.

    Fortunately, in this case the team was very cohesive, reasonable and able to problem-solve. At first she was given visual and verbal warnings of upcoming fire drills. Later she was presented with recordings of the alarm sound in short bursts, and later longer intervals on a recording. Social stories were written about loud noises and fire drills and why it is important not to run and hide. After a few months of gentle conditioning, she faced fire drills like a champ, and has handled herself well without any unsafe behaviors. Even though we did not need to look at alternatives to an auditory alarm, some OCR [Office of Civil Rights] decisions involving students with hearing impairments and sensory issues have required visual alarms to be in place, to not discriminate against students under section 504 which would also apply to students who have IEPs. Cumberland (RI) Public School (OCR March 27, 1992) 18 IDELR 1118.

    Not all stories are so happy. I had a student receiving services in a totally unsafe part of the school building. Despite the obvious dangers of having services delivered in parts of the building that were a fire trap, and strong advocacy at the IEP meeting, the team was unwilling to budge or make changes to where services were delivered. Instead of filing due process, we called and emailed the local fire inspector, and at that point changes began to happen in a hurry. As an alternative, we could have filed a section 504 claim with the OCR claiming discrimination from the fact that there was no real plan to evacuate this student, which has been upheld as violation in favor of the parents. Jefferson County (CO) Public Schools, (OCR, October 4, 2007), 50 IDELR 112.

    As stated above, the anti-discrimination mandate of Section 504 is a protection that also applies to students who have IEPs. Moreover, in the case I.R. v. Pierce, 55 IDELR 290 (M.D. Pa. 2010), a student with brittle bone disorder that was known to the school but not communicated to the bus company, succcessfully sued for injuries suffered during a drill that required him to jump from the back of a bus to the pavement.

    Given this past winter's snow emergencies nation-wide, and the ever-present threat of earthquake in the West, issues of safety for people with disabilities cannot be overlooked. Evacuation and emergency preparedness is a topic that needs much more attention both at the building level and at the individual student level. Fortunately, FEMA (yes that FEMA) has just developed new guidelines to address the needs of people with disabilities during an emergency. The Functional Needs Support Guidance which:
    "...gives state governments recommendations to help them provide emergency sheltering services that meet the needs of their communities and are in compliance with existing federal laws designed to prevent discrimination on the basis of disability. "
    While this guidance is meant for states there are core concepts that can be applied at the building and IEP level. Here are some specific resources from the a group at the University of Florida and from the National Fire Protection Association including lessons and plans for fire and disaster preparations for students with special needs.

    The issues around emergency planning for individuals with disabilities appear to be gaining some momentum. In January 2011, a disability rights organization (DRA) in Oakland, California settled a major lawsuit. The settlement and subsequent planning is expected to serve as a model of emergency planning for other cities on how to address the needs of people with disabilities in a disaster zone. Karla Gilbride, one of the lead attorneys for DRA, stated after the settlement:
    "With this plan Oakland is committing to address the needs of people with disabilities at every stage of emergency response, from communicating information about the disaster to evacuating residents to providing shelter to preparing for long-term recovery,” said Karla Gilbride of Disability Rights Advocates, an attorney representing the plaintiffs. “This sort of comprehensive approach is the best way to ensure that people with disabilities aren’t left behind the way they were after Hurricane Katrina.”
    These plans are not limited to the needs of those with mobility challenges. Planning at school should also not be limited to one class of students with disabilities. Students with autism, ADHD, hearing and vision impairments and emotional and other disabilities, all have unique challenges when faced with a disaster. The time to plan, rehearse and be prepared is when there is no imminent danger. The guidance and resources are available, now it is up to schools to incorporate preparations at the building level and for each student. If the district is unwilling to take reasonable steps to insure safety, it is imperative to file a 504 complaint with OCR before a tragic event occurs.

    A version of this post was previously published at Special Education Law Blog