Tomorrow, November 1, has been set as "Global Communication Shutdown Day."  We are encouraged to cease twittering and facebooking for the day in order to raise awareness of and funds for autism - and, to some degree, to simulate the communications challenges faced by people on the autism spectrum. The non-communication is supposed to mirror autistic isolation; the fundraising will take place when you pay for a "charity app" you place on your computer which "spreads the word, gives a shutdown badge to wear online and adds your picture to a global mosaic of supporters, next to the celebs."  Information about recipients of you donations can be found on the Global Shutdown Day website.

Not surprisingly, there is significant controversy within the autism community about whether or not a Global Communication Shutdown Day is a good idea.  According to the Communication Shutdown website:

It's a global initiative to raise much-needed funds for autism groups in over 40 countries. By shutting down social networks for one day on November 1, we hope to encourage a greater understanding of people with autism who find social communication a challenge.

Stuart Duncan, an autism dad and blogger who occasionally comments on this site, is taking part in a coordinated "Shout Out" event on Twitter and will (with others) host an online chat on The Coffee Klatch website to counter the day of silence.  Here, in part, are his reasons:

The whole idea of Autism Awareness and Advocacy is that we speak out for those people/children that can not speak for themselves. As such, it makes very little sense to silence ourselves for them.

Also, I'm not even Autistic but even I feel it's pretty insulting to think that not visiting a couple of websites could ever give you any insight into what it's like to have Autism. That's like saying that because you were in chess club, you know what it's like for children in bad neighbourhoods to get mixed up in violent gangs.

Marianne, a member of the Communication Shutdown team, has responded to Duncan's blog post, saying "...yes, it is one day of silence, but we are certainly making sure this silence will be noticed. There will be plenty of communication before and after the day. Also, through the application, a mass message of support will be sent out by all participants on the morning of Nov 1 to make a highly-visible statement all at once."

I personally don't intend to take part in the "Communication Shutdown." I'm not passionately against the idea, but I do have some questions about donating to a suddenly-there non-profit; I'm not at all sure that the event will help to improve understanding of a very complex and diverse group of people; and I truly think we're better served by communicating than by ceasing to communicate (even if it's for a cause). I will, however, dedicate this week's newsletter and tomorrow's blog to the topic of communication and autism.

Will you take part in the Communication Shutdown? What are your reasons pro or con? Share your thoughts and vote in the poll!

"Communication Shutdown" for Autism - Will You Participate? originally appeared on About.com Autism on Sunday, October 31st, 2010 at 10:35:31.

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The topic of community inclusion is becoming increasingly important to families with children on the autism spectrum - and for people with autism in general.   And community inclusion encompasses a huge field of possibilities.  The "community" includes everything from places of worship to bowling alleys; from soccer fields to concert halls.

In many cases, of course, people with autism spectrum disorders are already included - with little or no concern on anyone's part.  As a science museum consultant, I can tell you that children, teens and adults with Asperger syndrome are among science museums' most dedicated visitors, volunteers and interns.  When people with autism are non-verbal, physically disruptive or unable to focus on a task or presentation, however, the challenges for inclusion increase.

I'm conducting research right now in pursuit of several outside projects, to determine how inclusion is typically conducted.  There are several models - autism-only events and programs; unsupported inclusion (you're welcome to come and we won't stare); supported inclusion (trained staff provides help and support); reverse inclusion (people with autism are in the majority, while typically developing peers "push in" to provide models and support).  There are also a wide variety of ways in which support can be provided to people with autism, ranging from provision of visual planning tools (social stories, photo books, videos) to modification of the program itself (lowered sound in a movie theater) to intensive staff training at the community venue itself.

When my son was smaller, I was convinced that supported inclusion was the best possible way to involve kids with autism and their families in the community.  Families (parents, siblings) could be part of the world again, while the child with autism could take part in a situation where his needs would be anticipated and provided for. We've had very good experiences with supported inclusion at camp, in band, and in other typical settings.  In fact, supported inclusion has allowed our son to build some terrific musical skills, and to gain self-confidence, skills and knowledge in a variety of settings such as the YMCA, the bowling alley, and the museum.

What I've learned, however, is that supported inclusion - while it is the gold standard - has a lot of barriers to entry.  To start with, it's expensive: the cost of training or bring in trained staff is very high, and modifying program elements can also be quite pricey.

But just as importantly, full supported inclusion is not always best for the "autism families" themselves.

What could be wrong with a program that welcomes autistic family members, their parents and siblings, and makes provisions for special needs?  While the concept of full, supported inclusion is terrific, for some families its extremely stressful.

While it may be possible to include a child with autism in, say, a typical soccer team or at a special exhibit at the zoo, the experience may be too much for the child.  Yes, he might be able to run up and down the field and, with support, kick the ball - but without a great deal of preparation, many kids with autism won't fully understand what's required of him relative to teamwork.  He's on the field, he's cared for, but he's really not part of the team.  Similarly, it might be possible to provide trained staff and quiet spaces where a child can engage with animals at the zoo, but for some children the smells, crowds and heat may be simply unbearable despite everyone's best efforts.

Perhaps just as important as the child's experience is the parents' and siblings' experience in the community.  For some parents, the experience of watching a child with autism flap or become agitated in a typical setting with special support provided is just to hard to handle.  Depending upon the situation and the child's level of ability, it can be flat out embarrassing to be the only sibling or parent of a special needs child in a typical setting.  The kindly meant sympathetic glances can be infuriating, and the desire to leap up and step in can be overwhelming.

These days, I'm much more sympathetic to the families and institutions that take a less stressful, less costly approach to inclusion by creating autism-only events and programs.  Whether at the movies, at camp, at a museum or on a playing field, autism-only programs can offer families a combination of community, support, and ease.  If everyone around you is dealing with an autistic child, your family is no different from anyone else.  No one will give your child the evil eye for flapping, shouting, or melting down.  And of course the price of providing such a program is much lower: no need for special training for staff or modifications to programs or classes.

What do you think is the best way to include children, teens, adults and families living with autism?  Tell us about your experiences, and vote in the poll (you can click on multiple answers).

What's the Best Way to Include Kids with Autism and Their Families in the General Community? originally appeared on About.com Autism on Thursday, October 28th, 2010 at 09:58:39.

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The "Autism Quotient" (AQ) quiz has been around for years now.  It's a screening tool designed by Psychologist Simon Baron-Cohen and his colleagues at Cambridge's Autism Research Centre "as a measure of the extent of autistic traits in adults."  Published in Wired Magazine's website, it's now making the rounds on FaceBook.  According to the blurb on the Wired site:

In the first major trial using the test, the average score in the control group was 16.4. Eighty percent of those diagnosed with autism or a related disorder scored 32 or higher. The test is not a means for making a diagnosis, however, and many who score above 32 and even meet the diagnostic criteria for mild autism or Asperger's report no difficulty functioning in their everyday lives.

The Autism Quotient test is just one of many similar screening tests devised by the Cambridge research group. In fact, there are nearly two dozen online screenings available on the site, including AQ tests for adults, adolescents and children, empathy tests, "mindreading" tests, and more.

Of course, there is a disclaimer that these tests are not diagnostic, and they're only to be used for "genuine research." Still, for parents of children on the autism spectrum, adults wondering whether they might fall into an autism spectrum category, or anyone concerned about the symptoms of autism, these tests may be a useful first step in deciding whether or not to seek an evaluation.

Have you taken the AQ or any other of the tests at the Cambridge Autism Research Centre site?

Could You Be Autistic? Quiz Gives a Hint originally appeared on About.com Autism on Wednesday, October 27th, 2010 at 08:27:13.

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If your kids are like mine they are counting down the days until Halloween. They may have their costumes all picked out and are searching for the largest trick-or-treat bag or pillow case to collect the goods! Halloween is an exciting time for children, but it is also an important time to review safety issues.

Tips to Ensure a Safe Halloween

Worried about all the sugar and sweets? A good meal just before Halloween parties and trick-or-treating can help prevent youngsters from filling up on Halloween treats.

_{Photo © Microsoft}

Halloween Safety originally appeared on About.com ADD / ADHD on Monday, October 25th, 2010 at 12:57:13.

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Who is in charge of providing typical and special needs kids with the tools they need to succeed in life?  What are those tools?  And what do the schools have to do with providing them?

According to the IDEA (Individuals with Disabilities Education Act) American public schools must provide children with the tools they need to access the general curriculum.  In theory, kids with special needs should also receive help in preparing for and taking standardized tests.  For children with autism and many other developmental disabilities, though, there's often a whole separate set of expectations that are wholly unrelated to the "general curriculum."

The general curriculum consists of academic classes in math, science, language arts and social studies, along with (sometimes, when budgets allow) "specials" such as music, art, gym, and computers. There are other activities available through most schools (after school clubs, band, theater, athletics, etc.), but these are by no means considered "general curriculum."  They're not only optional - they're often available only through try-outs or auditions.  Plenty of typical kids either can't or don't take part in these activities.

Nowhere in the curriculum are there expectations that children should make friends, be socially accepted, build advanced athletic skills, play with others during free time, order in a restaurant, fold a shirt, shop for groceries or make a bed.  None of our standardized tests require that our students be capable of brushing their hair, hammering a nail, or choosing matching socks.  It is perfectly possible for young people to graduate high school with no clue of what it takes to boil an egg, fill out a check or dress appropriately for a job interview.  Typically developing children aren't taught "life skills" (bed making, bathroom cleaning, food shopping and the like) or social skills (how to make eye contact, shake hands, use a friendly tone of voice, exchange small talk).  In fact, if they lack such skills (and a great many do), they're simply left to flounder and cope with the consequences.

Today's public schools hire an entire second work force, just to support the needs of children with developmental challenges.  In theory, their charge is to include these kids as fully as possible in the general curriculum.  Yet instead of teaching the general curriculum, many are actually teaching a complete separate curriculum - a curriculum designed to teach children to behave in a socially acceptable manner and to do basic tasks.  The schools are spending a fortune on therapists who have no mandate to teach academic content, but whose job is to normalize children socially and to prepare them for minimum wage jobs or sheltered workshops.

Personally, I would love to see the entire school curriculum revamped.  I'd like to see all kids learning how to manage money, tools and kitchen implements...  dress and behave appropriately in multiple situations...  prioritize and manage time.  I'd be just fine with cutting down on high level math, science and literature classes for high school students, and assuming that interested and capable kids can move forward in those purely academic areas in a higher education setting.  I think all our children need to understand how to plan, budget, and think ahead...  care for their bodies, their homes, and their children.

But for the moment, practical skills are simply not part of the general curriculum.

If we are working to have  children with autism included in the general curriculum, then, logic would suggest that we should be working on those skills required to access the general curriculum.  That is: reading, writing, math, and, depending upon the school, cutting, drawing, molding, singing, running, jumping, and so forth.  Collaboration may be expected in certain classes, but it is perfectly possible to complete science projects without a lab partner, or to write a report individually rather than as part of a team.

So which is it?  What do we, as a society, value for our children?  Are we most concerned with their understanding how to live their day-to-day lives with grace and competence?  Or are we most concerned with their ability to grasp academic content and prove their knowledge through standardized testing?  Is it possible for us to teach all of our children to manage both of these sets of skills?

In my opinion, it's long past time for Americans to review the purpose of both general and special education - and to adjust programs, services and expectations accordingly.

Life Skills, Social Skills and the General Curriculum originally appeared on About.com Autism on Monday, October 25th, 2010 at 08:53:05.

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Yesterday, Gov. Paterson of New York vetoed a bill which would have required insurers to provide "evidence-based" autism screening, diagnosis and treatment through the lifespan.  DisabilityScoop.com explains that there were multiple reasons for the veto, including some major disputes within the autism community itself.   While Autism Speaks, a massive non-profit, advocated for the bill, there was significant opposition from autism families who disliked the wording of the bill:

The measure, which received unanimous support from the state's legislature, would have required health insurance coverage of "evidence-based, peer-reviewed and clinically proven" autism treatments, a stipulation that proved contentious among autism advocates in the state.

Anyone interested in understanding why a bill unanimously supported by the state legislature would be unacceptable to some autism families can read all about on Age of Autism.

Meanwhile, however, the Governor himself didn't mention the controversy within the autism community as a reason for the veto.  Instead, he cited costs: an estimated $70 million per year in additional costs to the people of New York, including higher healthcare premiums.

The question of insurance for autism care is complex, not only because of disagreements about which treatments should be covered - but also because coverage may be provided through so many channels including public schools, state and federal programs, and insurers.

For example, the very pricey, very well-regarded treatments for children often cited by autism care advocates as costing a total of $50,000+ per year include Applied Behavior Therapy (ABA), occupational therapy, physical therapy and speech therapy - and all of these treatments, along with additional social skills therapy, are offered through many (though not all) public schools.

Of course, public schools are paid for by taxpayers, who are now being asked to pay for the SAME treatments through increased health care premiums.  And those SAME treatments may (or may not) also be provided to individual families through state medical access programs or through federal Medicare entitlements - all of which are, of course, underwritten by taxes.  What that means is that, depending upon a family's state of residence, school district, insurer, financial status and age, any individual family may have one, two, three, four or zero sources of funding for a dependent's autism treatment.  And depending upon a family's circumstances, all, some or none of their services may be provided at taxpayer expense.  In addition, some families choose not to take advantage of funded programs because they believe that other, less-highly-regarded therapies are more likely to be successful for their children with autism - and so they pay out of pocket by their own choice.

So, while autism advocates are quarreling over the precise wording of autism care bills, the general public is saying "no" to such bills on the basis of cost alone.

And the reality is that while some families have multiple avenues for receiving autism care for children and adults, others have few if any options at all.

Who pays for your autism treatment costs?  Who should?

Controversial Autism Insurance Bill Vetoed in New York Highlights Complexity of Autism Funding Concerns originally appeared on About.com Autism on Friday, October 22nd, 2010 at 12:32:40.

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Kids with ADHD often have trouble with "too much behavior" -- too much talking, humming, noises, movement, fidgeting, wiggling, getting into things, etc. This overactivity and the constant struggle with self-control can be very frustrating for the child, as well as for those around the child. One mom shares her frustrations and asks for suggestions:

"My son talks non-stop. I cannot get him to shut up! Also, he says the most inappropriate things. Any advice?"

Click on Talking to read response. If you have advice that you'd like to share, please feel free to add it in the comments section below.

_{Photo © George Doyle}

My Son Talks Non-Stop! originally appeared on About.com ADD / ADHD on Thursday, October 21st, 2010 at 10:29:35.

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Once again, the good folks at Comedy Central are putting on a show in support of various mostly-unspecified charities for "autism education."  Much as I am delighted to see celebrities do well by doing good, I have to say I'm a bit baffled by this particular event.  Apparently Steve Carrell will be pretending to have an orgasm, Chris Rock will curse out a donor's ex-boyfriend, and many bleeped out words will be the order of the day.  Don't get me wrong: I'm a big Jon Stewart/Steven Colbert/SNL fan - but I'm not quite sure what the connection is between this particular TV Spectacular and autism.

Even curiouser than the content of the show is the lack of information provided about where the money will go.  Here's what Comedy Central's website tells us:

"Night of Too Many Stars" will benefit a variety of autism education and family service programs across the country, in support of the overabundance of autistic individuals that so desperately need quality services. One exciting new initiative is The Institute for Brain Development - an all-inclusive diagnosis and treatment center positioned to undertake groundbreaking collaborative research into the causes and treatment of autism spectrum disorders. The Institute is the product of New York Center for Autism's partnership with New York-Presbyterian and its affiliated medical school of Columbia University College of Physicians & Surgeons and Weill Cornell Medical College.

If I'm reading this correctly, it seems to be saying "the money will go to unspecified charities that are all about autism-related education and family services.  But the only actual beneficiary we can mention by name is NOT related to education OR family services, but instead focuses on research."

I looked up the Institute for Brain Development, and it turns out to be New York Presbyterian Hospital center in White Plains New York, described as "a comprehensive, state-of-the-art institute dedicated to addressing the pressing clinical needs of individuals living with autism spectrum disorders and other developmental disorders of the brain, across their lifespan."  In other words, a local autism center for residents of the New York metro area.

In conclusion: if you enjoy Comedy Central's brand of humor, you'll probably enjoy the show.  And if you're interested in donating to a local New York autism center or to other unspecified autism charities, you'll want to pitch in $100 to earn yourself a hamburger-scented candle from White Castle or a calendar featuring a sexy babe with Tina Fey's head photoshopped on top!

Comedy Central's Night of Too Many Stars Features SNL, Daily Show and Colbert Report Personalities originally appeared on About.com Autism on Thursday, October 21st, 2010 at 09:19:30.

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"My son has just started taking a stimulant medicine for his ADHD. The improvements he is experiencing are dramatic. We do have concerns, however, because he seems to really crash as the medicine is wearing out of his system. He gets very angry and irritable and he doesn't like these feelings...and neither do we. Is this normal?" --About.com reader

Click on Rebound Effect to read response.

Medication Rebound originally appeared on About.com ADD / ADHD on Wednesday, October 20th, 2010 at 13:26:30.

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