Friday, October 28, 2011

It's Becoming Very Real, That Sad World

Lydia Wayman

I went to a Town Hall meeting today regarding the cuts to the Pennysylvania Department of Public Welfare budget, which means cuts to Medicaid.

And so many people were saying that the results of cuts to Medicaid services for kids with autism (because probably 75% or more of the people there appeared to be parents of kids with autism, along with clinicians who work with people on the spectrum, and autistics themselves, like me) would result in the necessity of long-term institutionalization. In essence, sure, you’ll save the money now when we lose services because we can’t afford the copays, but it’s going to come back to bite you when we need to be institutionalized one day.

I read my piece in front of all those people and made my point, which was basically the same as what I just described, too. They took my letter to show to the legislators.

It made me think, just now. What a sad world it would be, no? And it’s becoming very real, that sad world.

I'm not sure of the statistics, but surely the majority of people with autism currently reside in the community. Many adults live with their parents or in group homes. Some of us live semi-independently. We work, shop, exercise, and play in the community.

What if we went back to the days of the 1950s when people with disabilities were shut away somewhere?

We'd eat in the institution.

We wouldn't shop.

We’d exercise in the institution’s hallways.

We’d play in the common room.

The world would lose so much of its color, its differences, and its interest. People with disabilities are people, first and foremost. I’m really not so different from you and yours. Really, I’m not.

And this is my world too! I belong here. I don’t belong shut within four walls. I don’t deserve to lose my rights. I have a voice, a mind, and above all, a heart. Have you given up hope on me so soon, that I won’t work and won’t make a place for myself? I’m only 23, and I’ve only had services for less than a year. I’m light years away from where I was in April when I started Waiver services. The goal of my services is increased independence, and I am determined to get there.

One lady at the Town Hall Meeting said that her children, her brilliant, beautiful, and autistic children would grow up and make millions. She has no doubts about that. Does the state really want those kids, left without services now, to someday take their millions elsewhere?

But more than that (though, as we know, money talks)… do you really want me to take my intelligence and quirkiness and insight elsewhere, or anyone else with autism? This is our world too.

We belong here.

Let us speak our minds.

Hear our voices.

Listen to our hearts.

What a sad, sad, world it would be.


This essay was originally published at

Wednesday, October 26, 2011

Lives Worth Living: A New Film on the American Disability Rights Movement

Shannon Des Roches Rosa

Psychiatric survivors during a protest in 1976
Lives Worth Living is a new documentary on the history of the American Disability Rights movement, specifically the critical years from World War II to the signing of the Americans With Disabilities act (ADA)  in 1990. It is a necessary, unapologetic, inspiring, instructive, and far-too-short film that could easily beome a series --  so many important people interviewed, so many topics covered, so quickly. (For those who want to dig deeper, the Lives Worth Living site includes an interactive timeline of international Disability Rights, and a list of interviewees.)

Viewers are given no opportunity to adopt the too-common patronizing perspective towards the disability rights activists in the film -- there's no time, these people have urgent stories to tell about themselves and their movement's history. Some subjects reject pity outright, as when Ann Ford tells how it felt to be the cute little disabled kid on display at March of Dimes events while people looked at her in her oversized wheelchair in horror -- and quickly put their money in the donation container because they didn't want their kids to end up like her. Or when Judy Heumann describes living in a society that assumes you don't have the same desires, hopes, and dreams as everyone else. A society that builds houses, schools, and facilities you can't use -- often with federal funds supplied by taxing you or your parents.

ADAPT protesters climb the steps to the Capitol
on March 12th 1990
Lives Worth Living makes it clear that when people with disabilities saw the accommodations so readily provided to newly disabled World War II veterans, they realized they had the right to -- and needed to -- fight for those same accommodations, that same acceptance. It also became evident that the people in institutions like Willowbrook State School were being neglected and abused.

It took decades of intense disability rights activism -- protests, demonstrations, arrests, occupying the rotunda of the Capitol building -- until George H.W. Bush signed the ADA, saying, "Let the shameful wall of exclusion finally come tumbling down." Though as Judy Heumann noted, "Discrimination doesn't easily end just because legislation passes. The fight against discrimination will continue to go on for decades."

The closing message of Lives Worth Living: people with disabilities are everyone's peers; they are not just people who need to be helped. That message was primary during last month's Self-Advocate/Parent Dialogues on this site, and was demonstrated dramatically at yesterday's Occupy Oakland protest when police used teargas on a protester in a wheelchair. It's a message I hope will be received, widely.

Lives Worth Living premieres on PBS tomorrow, October 27, at 10 PM

Monday, October 24, 2011

Words Matter: Thanks, Ricky Gervais, for the Pitch

Emily Willingham

For background on this post, see the coverage and update at -The Editors

When I was young, I lived a somewhat sheltered life. My parents never used racial or ethnic slurs around me or not around me, and even though I grew up in a small-ish, very southern town, the only slur I ever learned before middle school was the N-word, which I am myself to blame for having learned. At age five, rapt with the poetry of rhyme, I was working my way through the alphabet, rhyming with the word "Tigger." When I reached N, my parents became rather dramatic and, let us say, instilled in me a permanent repulsion for the word.

I was in Texas, so naturally, I did manage to hear that term again here and there. But it wasn't until high school that I came across other slurs, mostly having to do with Asians and Latinos and primarily thanks to politicians who used them. Then, in my first professional employment, I learned about other terms involving towels and some anti-Semitic terms. Before that, as an unwashed heathen growing up in an agnostic household, I had not encountered this embittered religious hatred by way of stereotypes and epithets.

Speaking of religion, there is a biblical saying that I think about a lot: "You can't touch pitch and not be defiled." Before my parents had to explain to me why I should never rhyme Tigger that way again, I was aware of differences in skin color. Aware, but confused. I watched "Sanford and Son" a lot and, thanks to Redd Foxx's coloration, had determined that my father -- with his black hair and dark skin and green eyes -- was like Redd Foxx. Society and culture and ethnicity, of course, disagree with that, but I was five, so I'll have to be forgiven. The point is, I was completely unaware of the gulf and instead viewed Redd Foxx and my father as related among humanity. My discovery about the N-word changed all that, and I suddenly became hyper aware that people saw distinctions that separated, rather than similarities that joined.

As someone who has always been more than a tad socially clueless, I wandered through my life unaware of other divides, other chasms, until someone else would use an epithet in front of me and then it would hit me all over again. A new divide to understand. A new cultural chasm of which to be aware. Without these words, these pejorative terms, people were just people to me. With an awareness of these terms came an awareness of hatred and division, and now they were in my brain. My ears or my eyes had, figuratively, touched pitch and I had become defiled.

In spite of my advanced age, I still manage to come across epithets that I know are in some way pejorative, but I avoid investigating the meaning because you know what? Enough with the pitch already. Yes, there are divisions that lead to historic and current oppression, but I don't think either side of whatever division it is needs to resort to hate speech to recognize the differences and the need for bridge building.

One divide that persists is that between the disability community and, oh, regular people. The disability community seems to be one of the last remaining socially acceptable targets across generations. I've had students who've used the word "retarded," talking about themselves, but meaning it comparatively to being intellectually disabled. I've seen people of my generation use it on Twitter, in movies, on TV. This word once had a purely clinical connotation -- as in "mentally retarded" -- but now some people would argue that its use has become so common outside the clinical realm, simply to suggest "slow" in some way, that it's OK to use it.

But using it relies on the foundation on which the word is built. It relies on a stereotype of intellectually disabled people as caricatures of universal slowness and incapacity. Without that stereotype, applying the appellation to someone else would have no meaning. Without that caricature as its foundation, the word "retarded" used self deprecatingly would not be self deprecating at all. In other words, the core foundation of the word "retarded" -- referring to the intellectually disabled -- is what gives its current use its meaning.

With an awareness that this term comes with baggage that is an offensive stereotype, I do not use it, in spite of anyone's arguments that the meaning has somehow shape-shifted and distanced itself from actually referring to the intellectually disabled. It hasn't. It can't. That stereotype is inherent in the term. To forget that is to forget about the rights of the intellectually disabled as people who deserve recognition as individuals, not stereotypes.

Words like "moron" and "idiot" have the same connotation. I especially dislike "moron," having seen it used more recently than many may realize in the clinical literature. Idiot, while satisfying as hell with all of those hard consonants, persisted even into recent decades as in the term "idiot savant," used to describe autistic people with perceived "savant" skills. I struggle to avoid using this word, it's so prevalent and comes to me so automatically. Once one has been defiled, it can take an effort of will to avoid blurting out these terms now embedded in the psyche. I understand that not using them takes work because I work myself on trying not to use "idiot." But these terms are loaded with meaning, specifically for the community of the intellectually disabled. Is it PC to argue that we shouldn't forget that meaning? I'd say that it's more accurate to call it apologetics when people argue that the former meanings don't matter.

Why this harangue? I have Ricky Gervais to thank for it. Today, I learned a new epithet. It's one I hadn't known before, either because of aforementioned social cluelessness or because I'm not British. Either way, he's used the epithet, one that's been applied previously to people with Down syndrome, and he remains unapologetic about it. His argument is that it no longer refers to people with Down's but that instead it's entered into a second act in its etymological life, one that somehow is absent the shadow of the stereotyping from which it arose.

So, once again, I've touched pitch. I've learned a new epithet and something new about human division. I've seen apologetics in action yet again, and feel that now, in two ways, we touch pitch and are defiled when people insist on using these terms and defending their use. One is that the words become a part of our psyche, like it or not. The other is that our fellow humans don't have sufficient humanity to renounce them.


This essay was previously published at

Friday, October 21, 2011

Idle Thoughts on a Son's Transition to Autistic Adulthood

Susan Senator

“Well, that was school. I learned a lot.” This is what my husband Ned once imagined our son Nat might be thinking as he rode home from his very first day of school, back in 1993. The school was located in a junior college in the adjacent town; it was a mixed-disability class, as well as having typically developing children. Ned told me that he had no idea what Nat might make of school -- it was such a big concept to understand for a three year old, especially one with “Expressive Language Disorder and Autistic-Like Symptoms.” (This was his very first diagnosis; I almost like its quaint and evasive character, in the way that I can look back on almost anything from that long ago with fondness: awww, such a little innocent naive diagnosis.) Even though we prepared him with a Nat Book (known to most people as Social Stories, but the Nat Books were invented by me; I did not know about Social Stories back then) complete with pictures of the teachers, classroom, building, and bus, Ned wondered if Nat might think that “school” was just that one day.

Ned stayed hidden in the hallway those first few days of Nat’s preschool. He hid so that Nat could forget about him and get used to the teachers there. He stayed a long time, listening to Nat cry. It broke his heart, but he knew that they both had to get through it. Plus those first few days were just for an hour or two, of transition, so Ned recently realized that he must have been staying in the corridor for a while because the school day was so short.

“Debi [the teacher] finally got Nat to look at her and stop crying, by quoting the commercial from the MassMillions Lottery,” Ned reminded me of this fact recently. I had forgotten that Nat was entranced by the lottery commercials back then, and he got the words “MassMillions” mixed up with “Maximillian” in that Nat way of his that was wrong yet made sense. “And the winning Maximillian number is…” Nat has always had terrific teachers. Except for one or two bad apples, the entire bunch was pretty much wonderful.


Will, Nat’s current teacher, called me the other day to set up a meeting so we can discuss the transition process for Nat’s graduation from school. The school is always so thoughtful and mindful of process. I remember how terrific they were getting Nat accustomed to the idea of living in The Residence. They used souped-up versions of the Nat Books, they used countdown calendars, they set up visits and dinners to The House. Nat was comfortable with the people and the place by the time move-in came.

His last day will be November 11, four days before he turns 22. We chose this day because it is a Friday, and Fridays make the most sense to be end days. We can then have his ceremony and party that afternoon. He will most likely spend his first days of Autistic Adulthood living with us at home, while we get the Group Apartment ready. We have settled on three-roommate group home in an apartment nearby. We have two other young men that we are hoping will become Nat’s roommates; their parents have to figure out how they themselves can prepare for this big change, as well as their sons. Our service provider is about to start recruiting a live-in caregiver. We have chosen Nat’s Day Program, in a nearby town. This program has many ties with local businesses like Shaws Supermarket, and we imagine Nat will have a lot of worthwhile stuff to do with his time there. I’m pretty sure the day program would likely begin the following Monday, November 14. Unless we decide to take Nat on a little vacation first, to celebrate his achievements.

Tonight Ned and I were talking about Nat’s imminent graduation, because we realized it was the same day as a friend’s annual dance party. We figure we can do both. One year we brought Nat to the dance party, and he loved it, of course. The way he dances is to hop straight up and down. “I wonder what Nat’s going to think that day,” Ned said. He paused a beat and then said, “Well, that was school. I learned a lot.”

We both laughed.


This essay was previously published at

Wednesday, October 19, 2011

Hacking Autism's App Hackathon (Part 2)

Last week Hewlett-Packard hosted an amazing event: a Hacking Autism app hackathon, which showcased innovative and philanthropic synergy at its most brilliant. The all-volunteer event brought together notable autism experts and app developers to focus on a common goal: developing free apps for tablet environments, based on crowd-sourced ideas from the autism community, to help people with autism communicate and contribute.

TPGA editor Shannon Des Roches Rosa was invited to participate as a parent and blogger resource based on her autism-specific iPad advocacy work, and found the event so incredibly positive that she is covering it in two separate posts. Part one covered the opening talks by the hackathon's advisors, and their specific takes regarding autism and technology. Part two is about experiencing the event itself.

Innovative technology can make a difference for autistic people. My son Leo excels in ways we (and Apple) never anticipated via iPad/tablet apps, which is why I attended Hacking Autism's October 11 App Hackathon in Cupertino. I figured that if Leo has benefitted so extensively and so well from technology that wasn't necessarily developed with him in mind, imagine the possibilities when teams of the best and brightest software innovators actually considered the needs of my son and his peers! I was not disappointed -- those innovators, they produced some remarkable apps in a mere few hours. Getting to observe positive, productive tech/autism synergy up close was a faith restorative.

Volunteer developer Mayank Malik
with the Emotions app he created during the Hackathon
Though Hacking Autism's stated goal is "using technology to give people with autism a voice," the App Hackathon was really about creating apps as useful tools for people with autism. The eight teams of volunteer developers spent the day creating apps chosen from the Hacking Autism idea gallery, including apps for social stories, learning to cross a street safely, and emotional "thermometers." One amazing volunteer, Mayank Malik, was somehow able to solo-develop an Emotions app in parallel to his team efforts!

Mayank Malik's Emotions app
Being at the Hackathon was electrifying -- all that volunteer talent, all that good will, working to help people with autism like (and unlike) my son -- and donating the resulting apps! It was occasionally emotionally overwhelming, but I was in good company, as opening speaker and HP CTO Phil McKinney teared up, too. I can't wait to see the apps that result, see if we can enter an era of apps that don't just avoid any special needs penalty costs, but integrate expert content and ideas with great design.

It felt good to be able to contribute myself on a smaller scale, e.g., by showing one of the Social Stories app development teams how existing social stories apps look and function -- they'd never actually seen such an app before -- and advising them on which elements to mimic, and which to avoid.

There was also a significant amount of parallel social activity, as developers and autism community members and experts got to mingle and brainstorm in person. I enjoyed finally meeting Russ Ewell, getting to see the Quick Talk Android AAC app he's developing (and would very much like SLP feedback on, hint). It was also a treat to meet Pamela Sloane-Bradbury from, the force behind my kids' much-beloved app Zanny: Born to Run.

A significant personal highlight was an extremely frank but civil impromptu big autism issues discussion that literally took place around a coffee table -- between me, Steve Silberman, Autism Speaks reps Mark Sirkin and Peter Bell, and newly-diagnosed autistic John Scott Holman. When else would a group like this come together? I truly appreciated that meeting of minds.

Steve Silberman and Alex Plank at the App Hackathon
And I am especially grateful for all the interstitial hang-out time with two gentlemen who are consistently easy on the social anxiety: Steve Silberman, who is writing a highly-anticipated book on autism and neurodiversity, and Alex Plank, who was filming the Hackathon for Autism Talk TV.

I'm delighted that more Hackathons will be happening, not just all over the U.S. but all over the world. I hope that eventually they might grow in scope, as part of my non-social non-advising non-sniffling Hackathon time was spent listening to my son Leo's autistic age-peer Schuyler St. Leger describe how he made the whistle he'd brought with him on his 3D printer, and hearing autistic adults talk about how much they adored and relied on Palm Pilot PDAs during the '90s and early aughts. I'm thankful for all the innovators who contributed to the Hackthon, I applaud their efforts, I will crow about the apps they produce -- and I hope this effort eventually extends beyond apps.


The apps developed at the App Hackathon will be posted at as they are finalized over the next few weeks. Those interested in hosting or getting involved with a hackathon should contact Random Hacks of Kindness,, or check out the RHoK event planning toolkit.

Monday, October 17, 2011

Hacking Autism's App Hackathon (Part 1)

Last week Hewlett-Packard hosted an amazing event: a Hacking Autism app hackathon, which showcased innovative and philanthropic synergy at its most brilliant. The all-volunteer event brought together notable autism experts and app developers to focus on a common goal: developing free apps for tablet environments, based on crowd-sourced ideas from the autism community, to help people with autism communicate and contribute.

TPGA editor Shannon Rosa was invited to participate as a parent and blogger resource based on her autism-specific iPad advocacy work, and found the event so incredibly positive that she'll be covering it in two separate posts. Today covers the opening talks by the hackathon's advisors, their specific takes regarding autism and technology.

The apps developed at the App Hackathon will be posted at as they are finalized over the next few weeks. Those interested in hosting or getting involved with a hackathon should contact Random Hacks of Kindness,


A primary force behind the event was Phil McKinney, Hewlett-Packard's Chief Technology Officer, who said, "he didn't want to donate equipment or money. He wanted to work on something that would have real impact." He got involved after his speech therapist daughter did volunteer speech therapy work in Rwanda, and it was discovered she and her partner had become the only speech therapists in Rwanda. Some families drove two hours just to get a chance to meet with the pair of SLPs! This really touched McKinney, profoundly and emotionally, and bolstered his determination to bring resources to underserved disability communities.

When the Hackathon was announced at Maker Faire in May, the response was phenomenal, and continues to expand -- now autism Hackathons will be happening in New York City, in the UK, all over.

The hackathons are all-volunteer effort. The goal is to create tools that can help people with autism communicate, and contribute, and help the development community understand exactly how they can help people with autism in everyday life.

Chris Chirco from the Doug Flutie Foundation emphasized that his organization's focus is on supporting autism families, not on research and treatment. He said that autism families have lots of expenses, but limited resources -- that is why events like App Hackathon are so important. Volunteers are critical.

Andy Shih from Autism Speaks talked about his organization, about "what autism is," and what role technology can play for autism families. He wanted the Hackathon developers to understand that autism is idiosyncratic, and that as a result we need to talk about autisms, rather than autism.

Autism Speaks research includes autism prevalence, early detection/diagnosis, sibling rates, behavioral and pharmaceutical intervention. They are starting to invest in global prevalence studies, e.g., the Korea study. Autism doesn't just happen in the developed world.

How can technology make a difference? Tablets like iPads are affordable, portable, have predictable structure, are great for visual learners.

Hackers don their white hats at the autism App Hackathon.
photo (c) Steve Silberman
Peter Bell from Autism Speaks is the parent of an 18 year old son with autism. He opened by talking about the latest trends in the autism community. After decades of misinformation and stigma, he considers us to be in autism's Age of Hope.

Bell considers PDD to mean "Physician Didn't Decide," and emphasized that autism is a spectrum disorder. He gave a nod to Stephen Shore with the saying, "If you've met one person with autism, you've met one person with autism."

He says autism is now ubiquitous, particularly on the political stages; there's also a strong media interest. It is also one of only three conditions recognized by the UN, in terms of having its own World Awareness Day

There is tremendous benefit to diagnosing autism early as possible, yet diagnosis age is around age four, and it's later for minority populations. This is a serious problem in terms of getting people with autism and their families the proper supports and resources. Plus 500,000+ children with autism will become adults over the next decade. They will need transition and workplace supports.

People with autism need to have a voice. And we need to listen to Autistics themselves, not just their parents. We especially need to remember that being non-verbal doesn't mean that you can't participate and communicate.

The whole goal here is to improve quality of life for people with autism

Shannon Kay is Executive Director of the May Center for Child Development, a school for children with autism. She talked about the impact of technology in a school with 1:1 instruction based in Applied Behavior Analysis (ABA) principals.

How technology has benefited students: it supports communication and data collection; it diversifies teaching tools; it's a versatile reinforcer [motivating item or tool]. The students that do the best with high tech devices tend to be those who have done well with low-tech systems like PECS. They also tend to have strong prerequisite communication skills, e.g., good matching skills, and have outgrown low-tech. But you can't just throw a tablet in front of a kid and say "hey, talk to me." Parents and teachers need systematic training,

The benefits of tablets and other communication technologies: They allow for easy access to a wide vocabulary, and they are portable. They also provide voice output, which can give Kay's students a voice that is more easily acceptable in the community; that value is immeasurable. Technology can be a bridge between the kids who use it and their typical peers.

Tablets are not a communication panacea, especially if kids have behavior and motor-control challenges. Some students will truly continue to need a dedicated non-Tablet communication device. But Kay is hoping that the introduction of a more efficient communication system can help reduce problematic behaviors.

Computers make great teachers for many kids -- they are consistent and predictable. They also make it possible to have quick two-second [ABA] inter-trial rewards, which results in much quicker learning. People can't move that fast to provide rewards between ABA trials without lots of training.

Technology/computers can make choosing rewards much easier and more flexible. Especially when customizable predictable content is available! Technology/tablets are also versatile reinforcers, they can compete with self-stimulatory behavior, or "stims." This high motivation provides rich opportunities for language development, beyond requesting and into commenting! Even for older kids and young adults. (Kay showed a video of a seventeen year old who had only recently developed commenting language -- which is social, as opposed to requesting language, which is not so much -- and did so using tablet technology.)

Will Pate from Random Hacks of Kindness
Addresses the Hackathon participants
photo (c) Steve Silberman

Will Pate from Random Hacks of Kindness: Why hack for Humanity? Because it feels good to motivate people, especially when it's fun. And if you share attribution/credit -- widely -- folks feel acknowledged, regardless of size of contribution.

It's important to build tools that matter, not the first thing that comes into your mind. Open source technology can create the framework.  But -- you have to work with the experts. Technology can't solve problems on its own. You have to ask questions, and seek early/often feedback.

It's also important to investigate potential licensing and copyright before jumping into any philanthropic hacking/coding/development endeavor. Make sure you check your employment contract! Your work might belong to your employer.

On getting started: first steps: assess team, make sure you have everyone you need down to testers, documentation, QA.

How do we build an entire app in a day? That's not the goal. The goal is a minimum viable project for testing and feedback.


On Wednesday 10/19, Shannon will report on the experience of attending and participating in the Autism App Hackathon.

Monday, October 10, 2011

Learning to Play a Musical Instrument is for People with Autism too!

Stephen M. Shore, Ed.D.


“Can you help me draw a straight line down the middle of the page?” I ask my student upon our initial meeting.


“How about three more lines, going sideways?”


Soon we have eight empty squares on what was a blank notebook-sized piece of paper.

“A!” responds my student when I ask for the first letter of the alphabet.

I then ask him to write that letter in the first box before moving on to B through G. The 8th box is filled with the word “extra.”

“Excellent!  Gee, could you finish writing out a line of ‘As’ on this specially prepared yellow stickie™?”


“Now let’s write up some ‘B’s…” And we continue until we reach the letter G.

Now with a “bank” of letters I’ll have the child use a scissors to cut the bottom part of the stickie™ off before cutting out each individual letter.

“Where do you think the ‘A’ goes?” The child responds -- often by pointing -- to the box with the corresponding letter on a previously prepared piece of notebook paper. Next thing we know, that paper is filled with letters.

After placing all the letters in their proper location on the sheet it is now time to explore the piano keyboard.

The Keyboard

“I wonder if you can guess what the 1st key on the piano is called?" Often the child responds by naming the letter “A,” which is correct for an 88-key piano. The note “C” starts off a 61 key keyboard.

“Can you place an ’A’ on that first key?” “What comes next?” Soon the entire keyboard is filled with little stickies™ marking the notes. From here we explore the keyboard, make a musical staff, and start reading music without my mentioning that is what we are doing.


The goal is to teach the child on the autism spectrum how to play a musical instrument. I have found that children with autism tend to have very little patience for diatribes on rules, techniques, or other concepts commonly explained in the early stages of learning how to play a musical instrument. Therefore, I quickly engage the students in creating the materials used in becoming familiar with the elements of music, making the process of learning music much more meaningful to them. Very little talking or explaining is done.

Most often I start children playing either a keyboard instrument or recorder. The keyboard works well because all the notes are laid out in a highly visible manner. Also, children with challenges in motor control can often be successful just by finding and pressing the desired key. Recorder works well for some students because it is small, relatively easy to play, and promotes good breath control. Some students will be helped by placing reinforcements on the holes to provide a better tactile sensation as to their locations. Additionally, recorders are very portable and inexpensive -- easy to replace if lost. Finally, for those students who come in really wanting to learn another instrument such as tuba or trombone, I am glad to start them on those instruments as well.

The therapeutic benefits of communication, social interaction, motor control, etc., that music therapists look for when engaging a child in this expressive art are very important. However, learning how to play a musical instrument provides the person a real life key to unlock the door to interacting with others as a musician -- perhaps as a soloist or a member of an ensemble. Additionally, being an area of competence is especially important when there may be challenges in other areas such as communication, socialization, academics, etc.; Also, music is just plain old fun!

People all over the autism spectrum can learn how to play a musical instrument. My students range from being nonverbal with significant challenges to those with Asperger syndrome and being hyper verbal.

Finally, I have yet to figure out how to teach children who are not on the autism spectrum. Those with autism are so much more predictable and easier to understand!


This article was first published in the Spring 2010 AHA newsletter, On The Spectrum,

Stephen in action. Photo by Steve Silberman

Friday, October 7, 2011

Communication: A Million Little Things

Lydia Wayman

If I knew what to say, I’d tell you a million little things that I’ve acquired in my brain over the weeks and months -- and lifetime.

If I could, I’d tell you that I’m so over age appropriateness. You say Disney and American Girl isn’t age-appropriate for me? Well, excuse my language, but I say you can shove it. I would, if I could, ask you what is the point of encouraging age appropriate interests? Is it to make friends? I have many, even more than I can keep track of sometimes. Is it so that people will like me? Hate to break it to you, but people already do like me (not everyone, but, well, obviously, right?). Is it so that I can be normal? And to what end, I would ask? If I’m comfortable with it, you should be comfortable with it, and that’s that.

And if I could, I would say that that I’m so over normalcy. Ask Chloe (my thousands-of-miles-away-autistic-best-friend whom I’ve actually never met in person!) what “normal” means… she’ll tell you that it’s “just a setting on the washing machine.” I would argue that “normal” is of no value outside of its statistical meaning, which is the mean or standard deviation of zero. If “normal” means chasing down boys, going to bars, and trying to “get ahead”… all the while being unable to articulate your personal beliefs, values, and sense of self… well then, I rest my case, I would tell you.

If I could, I’d tell you that the peace that silence brings me is like a starry night and an open field. It’s huge. It’s wondrous. It’s freeing. I’d tell you that speech is harsh, cold, and metallic. There is beauty in silence. Rather than run from it, try embracing it.

If I could, I’d tell you that I’m still stuck on some aspects of theory of mind. I simply cannot grasp that other humans have brains like mine that think thoughts like mine (this, coming from the girl who literally authors blog posts while she sleeps and dreams of typing). I can’t grasp that people can think while other humans are present. I ask, again, how does the world not explode? I also get myself entirely confused when trying to figure out the essential aspects of a story which I must relay to another person in order for them to understand me. I say too much or I say too little, but rarely do I get it just right.

And if I could… oh, I’d tell you. I’d tell you that sometimes I feel like I ought to be doing a much better job of telling you what it’s like on the inside, so to speak. I’d tell you that I have no direction, no idea where my writing is going, just that I need to write. I’d tell you that sometimes I think that a more interesting, more relatable, or even a more autistic person ought to be writing, and not me. I worry… I’d tell you.

I’d ask you how people are meant to sleep at night when the world is in such pain. Perhaps I don’t show much empathy, but I literally lose sleep over hunger, pain, death… over people who have no faces and no names, over animals, over life itself.

And, I do apologize, but I would implore you… I would say, “Educate!” Tell just one person today something, anything about autism. Shatter a stereotype. There’s a whole world out there, and it’s ours for the taking, but we have to get past our shyness and educate. My place is at my keyboard, and I thank God that I have found these keys and taught these fingers; where is your place?

I would tell, I would ask… I would even implore… but there are just no words, or none good enough. But then, words are all we have.


Arranger of sounds.
Syllables run freely.
 The keys speak, confirming a notion expressed.
 Once only a thought, now let free.

Author of songs.
 Sung note by note.
 Songs breaking through silence.
 In monochrome.

 Artist of freedom.
 Effortless strokes of the keys.
 Awareness so hoped for.
 They’re words that she weaves.

Wednesday, October 5, 2011

Talking About Sex With Young Adults With Autism

Laura Shumaker

The morning of May 22, 2006, I set my alarm for 4 a.m. I wanted to be the first one to wish Matthew a happy birthday. He was in a college program at Camphill Soltane near Philadelphia. Matthew answered the house telephone on the first ring.

He knew I would call.

“Matthew!” I said. “You’re 20! Can you believe it?”

“Yes,” he responded flatly. “But Mom? I have something very important to ask you. I’ve been thinking about Amy. Can we go see her?”

Matthew had met Amy three years before during his first year at Camphill. Like Matthew, Amy has autism. The staff at the school had told us that they liked each other a lot and we were thrilled; since Matthew’s diagnosis years ago, we grieved at the thought of him living a solitary life.

By the time Matthew became interested in girls, he picked the “typically developing” ones -- those who showed him even the slightest kindness, smiling at him in the hall at school or helping him as tutors in his special-education class, and he trailed them relentlessly. He would cry and sometimes yell at them if they told him to back off, and no amount of coaching helped. We were thrilled that the school community nurtured and supervised his friendship with Amy.

Amy’s parents were also excited about the budding relationship, and since they lived near the school, they were able to observe and support the autistic lovebirds.

“They are beautiful together,” said Katie, Amy’s mother. “They go for walks and talk, sometimes sitting on the garden bench. Amy doesn’t like to be touched and Matthew respects that.”

Contrary to popular belief, not all autistic people are averse to touch, and we were surprised that Matthew, who had been known to approach women of all ages and ask them if he could put his arm around them, or touch their hair, could restrain himself. I had shared this information with Katie and the school staff.

“So keep your eye on him!” I laughed nervously.

“Oh believe me, we do!” they reassured me.

Amy’s parents sent a picture of the young pair together, and they were a striking couple: Matthew, tall and blond with a wiry frame, broad shoulders, and brown eyes, and elfin Amy, short and slight, with long brown hair and pale blue eyes. The pair stand side by side, looking down and smiling slightly.

“Amy doesn’t usually let anyone stand that close to her,” said Katie.

A few incidents in the course of the relationship kept us on edge, as when Amy refused to see Matthew for a week after he pushed her into a swimming pool fully clothed, and the time he followed her into the bathroom and locked the door.

“Did he do anything?” I asked the staff, my heart racing.

“No, he just watched her going to the bathroom.”

While news of these missteps was unsettling, we felt fortunate that the staff remained calm. They used the episodes to teach Amy and Matthew appropriate rules of relationships. Everyone began to believe the relationship could last, and wouldn’t that be great?

But a few weeks before the end of the school year, Katie and Sam, Amy’s father, took the two out to lunch to celebrate Matthew’s birthday. Just as Matthew was opening a gift that Amy had picked out especially for him, he asked the group if they knew Katherine.

Katherine was a student-teacher-in-training who had been visiting the school for the last few weeks. I had heard that she was very attractive, and that Matthew was taken with her.

“She is probably better-looking than Amy,” he said. “I might like her better.”

As a person who would rather endure great pain than hurt anyone’s feelings, I was mortified when I heard about his comments. But Katie and Sam found them amusing and said that Amy didn’t take them personally. I didn’t want to ask whether they thought that Matthew was dumping Amy.

“If we could all be more straightforward, the world would be a better place!” they said, but I was more in favor of polite avoidance and gracious reserve. And Matthew will never be subtle. His brain is wired for brutal honesty.

Peter and I flew back a few weeks later to pick up Matthew for the summer break, and we asked him if we could meet Amy.

“I’ve moved on,” he said, “and we’re not going to talk about it anymore.” Katie and Sam stopped by to meet us in person, for by now we had already forged a strong connection, having commiserated long-distance about the road behind and ahead. We had laughed about our kids’ similar eccentricities and wondered how we could help them connect in a meaningful way.

Though Matthew and Amy parted for the summer dispassionately, we hoped that their friendship could be rekindled in the fall. But the following October, when I asked Matthew about Amy, he reminded me that he had moved on.

“Besides,” he said, “she got a haircut, and I don’t like it.”

In the year since Matthew had last seen Amy, who was now attending a Camphill School in New York, he had complained that there were not enough nice girls around, and that he was lonely. He asked me if I thought, perhaps, that Amy might be lonely, too.

I called Katie and told her about Matthew’s request, and suggested that perhaps we could arrange a visit over Memorial Day weekend. She agreed right away. Maybe we could have lunch at their home in Connecticut, and then go bowling and for a hike! I felt like such a good mother going the extra mile to help my lonely son.

Matthew and I drove from Philadelphia to Connecticut and spent the night with family before meeting with Amy and her parents.

“What will we do at Amy’s?” Matthew asked.

“We thought it would be nice to visit for a while at their house,” I said, “and then go out to lunch. Maybe we can go bowling.”
“No bowling,” he said. “When we get to Amy’s, all of the grown-ups will talk outside, and Amy and I will go in the house and sort things out.”
Sort things out?!
“What do you mean, sort things out?” I asked.

“I want to be alone with Amy in her room with the door shut,” he responded.

“But what if Amy doesn’t want to be alone with you, and what if her parents don’t want you to be alone with her?” I asked, all at once feeling like I was headed for a trap.

“I’ll tell them that I’m no one to be messed with,” he said, “and we aren’t going to talk about it anymore.”

It became clear to me that while I was making plans that you might see on a made-for-television movie, Matthew was making plans of his own.

After a brief discussion that escalated into a shouting match, I let the subject drop and called Katie with an SOS before we went for our visit the next morning. The two of us laughed uneasily about Matthew’s plan, but decided it would be best to go ahead with the visit.

“We’ll just have to be firm,” said Katie.

But the next morning, when we arrived at Amy’s house nestled next to a pond at the end of a lovely green country lane, there was no walking and talking and standing side by side with slight smiles. Amy, looking adorable in white capri jeans, tank top, and high-heeled sandals, was a bowling pin, and Matthew was the ball, with overwhelming momentum. After the initial greeting where we all told each other how great we looked, Katie suggested that we sit down and catch up.

“Listen,” Matthew responded, “I’m the boss today, and I say that Amy needs to be all alone with me in her room.”

“But I don’t want to be alone with him,” Amy whispered to her mom. “He’s too bossy.”

“Matthew,” Katie said calmly, “we are so glad you could visit. But Amy would be more comfortable if we all hang out together.”

“No way!” yelled Matthew. “I’ve been thinking about Amy for a long time! I even dream about her when I’m sleeping, and I want to be alone with her!”

God help me.

“What you are saying then, Matthew, is that you don’t care about what Amy wants,” Katie said, locking eyes with Matthew. “It’s only important what you want.”

“That’s right!” said Matthew triumphantly, like a game-show host moving a contestant to the championship round.

Sam, Katie, and I, all experts in helping our children get through meltdowns, gave this visit our best shot and tried all of our tricks, but it was no use. When Matthew made plans, he was determined -- obsessed -- to see them through, and of course we weren’t going to let him have his way.

“Let’s go out to lunch now!” I said, desperate to move things along. It was only 10:30.

We all piled into the family’s minivan, Matthew leaning close to Amy, and Amy leaning away from him, muttering, “He’s bothering me. I don’t like it.”

During lunch, where Matthew ordered pizza and 21 french fries, Sam, Katie, and I tried to reduce the tension with cordial conversation.

“Matthew, tell everyone where you are going this summer,” I said cheerfully.

“I’m not in the mood,” he replied. “Let’s go back to Amy’s.”

“Matthew,” Sam said, trying to change the subject, “guess where Amy is going this summer?”

“I give up,” said Matthew, “and I’m tired of all this talking.”

Once back at the house, Matthew announced that he would like to stay a little longer, and then come back the next day, but Sam, Katie, and I, who all looked like we had aged ten years in the last few hours, blurted out reasons why it was time to end our visit — now. Somehow I managed to get Matthew back into the rental car, and we drove away. Matthew burst into tears, and when we got to the main road, I pulled over and hugged him.

“They wanted me to stay,” he said, “but I’m too busy.”

“That’s right, Matthew,” I said, patting his back. “You’re a busy guy.”

The next morning, I called Katie and thanked her, and said wow, wasn’t that exhausting. She said yes it was, and did I know that Matthew had asked Amy if they could lie down in the grass and do sex.

“Oh, Katie,” I gasped.

“She said she didn’t want to lie down in the grass because she didn’t want to get her clothes dirty and I’m not sure if she even understood what Matthew was wanting. She’s still pretty naive.”

“Oh, Katie,” I repeated, “I am so sorry. Thank you for telling me. Thank you for being so honest.”

“And we thought it was difficult when they were young,” Katie sighed.


When Matthew was in eighth grade, a psychologist who specialized in teaching adolescents with special needs about sex visited his class. A handful of parents, including me, looked on from the back of the room as she stood in front of the class with the most impressive poker face and peeled the clothes off of a man doll and a woman doll. The dolls shared her ridiculous poker face as she fit their parts together.

“Oh, my God,” Matthew mumbled in disgust, as parents stifled laughter. I was transported back to the day that I sat in the auditorium of Havens elementary school, slides of male and female reproductive organs flashing on the pull down screen in front of Mrs. Stewart’s 6th grade class. Pamela Abernathy fainted and fell back in her chair and my friends and I giggled reassured each other that our parents had only done that when they wanted to have babies. I wondered how Matthew was processing this information.

How could I be sure that he understood the basics of sexuality (including the urges??)

“If we’re not pre-teaching kids with autism going to middle school,” say’s Peter Gerhardt, an expert in adults with autism and the Director of the Organization for Autism Research , “they’ll get a very skewed vision of human sexuality.” Peter spoke at the recent Morgan Center Autism Conference.

Some tips from a past interview with Lisa Jo Rudy: [note: article mentions sterilization without consent. -Eds]
  • Think ahead – be proactive (“pre-teach”)
  • Be concrete (talk about the penis or vagina, not the birds and bees)
  • Be consistent and repetitive about sexual safety
  • Find someone of the same gender to teach the basics of safety and hygiene
  • Be sure to address the social dimension of sexuality
  • Strongly reinforce for all appropriate behavior
  • Redirect situationally inappropriate behaviors. (such as masturbation.)

Meanwhile, back in Connecticut…

I decided to call Matthew’s primary caregiver, David Schwartz at Camphill, who had helped guide Matthew with his relationship with Amy from the beginning. He had a way of explaining things simply and frankly. Matthew had great respect for David and turned to him when he was upset, confused, or simply needed to work something out.

“I’ll talk with him as soon as he gets back,” said David. “I’ll call you and tell you how it goes.”

“What did you say? What did he say? Did you get through to him? Should I talk to him?”

David told me that he asked Matthew to tell him about his weekend. “How did it go? How is Amy doing?” he had asked.

“Amy looked nice, but the grown-ups wouldn’t let us go in Amy’s room and shut the door.”

“Did Amy want to go in her room with you and shut the door?”

“Not really. So we went outside and the parents kept watching us.”

“Did Amy want to be alone with you outside?”

“I’m not sure.”

“Did you touch Amy?”

“I wanted to. I wanted her to lie down on the grass so we could do sex.”

“Have you ever had sex with anyone else?”

“Probably not.”

David told Matthew what he had heard many times before -- but none of it had made sense until today.

“Sex is part of a loving relationship. Both people have to agree to have sex, or it is out of the question. If you have sex, the woman can get pregnant and have a baby. Do you understand?”


“Are you ready to be a dad?”

“No way. I decided I’m not going to do sex with a girl after all.”

David reassured Matthew that it was normal for a man his age to want sex, but that there were other ways to satisfy those urges.

“The business of sex and relationships is complicated for all of us,” said David. “Matthew needs everyone to support him through this. Just keep it simple, be honest.”


Epilogue, from Laura: "Matthew talks less about sex these days and more about how much he wants a girlfriend. There are fewer women than men with intellectual disabilities in his community for the time being, so it's been frustrating for him. I've encouraged him to meet peers -- both men and women -- while doing activities he enjoys, such as singing, gardening, bowling, and of course weed-whacking." 


This story is an excerpt from Laura's book A Regular Guy: Growing up With Autism. A version of this story appeared at Laura's City Brights column for SF Gate.

Monday, October 3, 2011

Jean Winegardner's Interview with Ryan Cartwright of Alphas

Jean Winegardner

Ryan Cartwright as Gary Bell of "Alphas"
I am always interested to see how television shows use autistic characters. Thanks to a column I wrote for Autism Unexpected, I was able to conduct an email interview with Ryan Cartwright, the actor who plays autistic character Gary Bell on Syfy's show "Alphas."

Ryan had some great answers to the questions I had about creating an autistic character for television. He was interested in seeing his full answers published, and I agreed. (Don't forget to read my full story about the show as well: "He's not autistic, but he plays one on TV.")

Check out what Ryan had to say, and be sure to let me know if you've watched "Alphas" and, if you have, what you think of it and its portrayal of autism.

Jean: How did you approach playing an autistic character differently than the other roles you've had in the past?

RC: I used the same approach—it was just the amount and specificity of the research that differed. I always need to feel as though I have earned a right to play the character, to the point where the character is actually playing me in a sense. I wanted to do as much research as possible to the point where I felt as though I could empathize with Gary as though he were a real person and not a fictional character.

What did you do to prepare to play Gary?

I watched a lot of documentaries, YouTube videos. Consulted with people who work with autistic people. The most helpful and interesting aspect was the literature I found. Some wonderful books by Temple Grandin, Daniel Tammet, Oliver Sacks et al; and some lovely vlogs and blog sites by autistic people.

Specifically, reading about autism and neuroscience helped me understand the reasoning behind a lot of the physical attributes and difficulties of people with autism, which in turn helped me create, as opposed to imitate, a physicality for Gary.

Also, I must mention that Gary’s autism isn’t necessarily linked to his ability to visualize electromagnetic waves, and that the process of maturing while being bombarded with this perma-light show inside his brain has also affected how he behaves as an individual.

Do you have any personal connections to autism in your life?

A good friend of mine is autistic and he gave me some nice little insights into his disorder, but that wasn’t something I drew from a great deal.

What was the greatest challenge you faced in preparing to play Gary?

The main challenge was correlating all the disparate bits of info I had for the character and then making him his own person with a decent amount of consistency. To be brief, the character was a rough sketch to begin with, and the wonderful writers and producers on the show, along with myself, slowly connected all of Gary’s traits and conditions until he was a balanced and believable individual (considering his circumstances).

A fun bit for me was creating all of his hand movements for how he guides himself through the wavelengths.

What are your favorite things about Gary?

I like that he has a voice, an attitude, and a developing sense of humor. He’s an innocent in certain ways, which makes him endearing, but he’s also finding himself in a position of great appreciation and admiration for the first time in his life, so he’s strutting a little.

It’s also quite relaxing to not have to look people in the eye all day. You end up listening and visualizing a great deal more, which puts me in a different head space altogether, and we all know that’s never a bad thing from time to time.

Do you and Gary have any similarities?

Cheeky sense of humor. We both like sexy shoes on ladies (you’ll see ;) ).

What can fans look forward to in terms of Gary this season? [Note: this interview was originally published on August 2, the season has since concluded. -The Editors]

He is coming into his own as an individual. The team is helping him do this. It’s like he’s re-entering society in an appreciated role as opposed to his insular beginnings. Also a super fun episode called “Bill and Gary’s Excellent Adventure.”

What, if any, responsibility do you feel to the autism community to portray Gary realistically?

Obviously that was the reason I did so much research in the first place. As an actor and an empathetic person, I wanted to know that I was coming from a real place. I’ve been very touched by all the people who have expressed their appreciation of my portrayal thus far.

I feel as though my first responsibility is to Gary as an individual. As I’ve said before, you want to play the person not the disorder.

Everyone involved in the show is taking great pains to be sensitive to the autistic community, none more so than myself. At a certain point you have to let the character do their own thing, and I believe the worst thing you can do when portraying someone with a different lifestyle or manner of perceiving the world is to patronize by way of condescending with compassion. People who have faced great difficulties rarely want pity, and often find it offensive and misplaced. It’s not just autistic people who live on a spectrum, we all do. Everybody has an individual voice, and Gary is just expressing himself how he feels most comfortable.

What is your favorite thing about "Alphas"?

Nice location shooting. The stellar cast. Phenomenally talented and responsive writers. Super smart producers. The humorous character banter. Catering, and days off in Toronto. Big up!

Is there anything else you would like to let me know about your experience playing Gary? My readers tend to be parents of children with autism or autistic people themselves. Is there anything you would like them to know?

I just hope that they enjoy seeing Gary blossoming against his own adversity. I’m an entertainer, and that’s mainly what I hope Gary and the show as a whole does for everyone regardless of their life situation. We all deserve a little entertainment on Spaceship Earth, right?!


A verision of this post was published at

The last four episodes of Alphas can be viewed on, and the full series can be found on iTunes. New episodes will air in 2012.