Friday, March 30, 2012

Interview: Dr. Sally Ozonoff on the MIND Institute Infant Sibling Study

Dr. Sally Ozonoff is the Principal Investigator of the Infant Sibling Study Team at the UC Davis MIND Institute. We talked with Dr. Ozonoff about her autism research work, how the Infant Sibling Study operates, and what the study does and does not mean. This interview took place before yesterday's CDC announcement about autism prevalence rates, but Dr. Ozonoff's team had some similar findings within their own study, especially regarding earlier/more intense scrutiny leading to earlier and increased rates of autism diagnoses.

How did you become involved with the Infant Sibling study? Is it in line with your previous areas of research?

I have always been interested in diagnostic issues within the autism spectrum. I began my work in the autism field researching individuals with Asperger syndrome, trying to understand if and how they differed from individuals with autism. This was back in the early 1990s, when Asperger syndrome had just been added to the DSM-IV. I also spent about a decade doing research on the neuropsychological strengths and weaknesses of children on the spectrum, looking at their executive function skills, theory of mind abilities, visual processing, etc.

In 2001, I was recruited to the MIND Institute. Part of going to a new institution is the opportunity to re-tool your laboratory, since you have to buy new equipment, remodel space to suit your research needs, hire and train new staff, etc. I had always been very interested in early detection and when the earliest signs of autism were apparent. However, these were difficult questions to address in a lab that I had built around the needs of high functioning older individuals with autism and Asperger syndrome. So, when given the opportunity to change course somewhat as I moved to UC Davis, I began to study infants at high risk for autism and haven't looked back since!

It's been very interesting work. I am trained as a clinical psychologist and have always worked with families in clinics throughout my career. One aspect of the infant sibling research that is the most satisfying is that it has direct clinical applications. The things we are learning in the lab are directly applicable to families who are participating in research and, I hope, are helpful to them ... in addition to advancing science and helping others.

How were Infant Sibling Study participants recruited?

An Infant Sibling Study participant, and her autistic brother.
Photo © Shannon Des Roches Rosa
Participants were infants (under the age of 18 months old) who had either an older sibling with ASD (we call this the High Risk group) or older siblings who were typically developing (Low Risk group). The High Risk group was recruited through the MIND Institute, Regional Centers, and various community organizations serving children and families with ASD. The Low Risk group was recruited through flyers posted around the community and the obstetric departments of local hospitals.

The media has been very interested in your study and its results so far. Do you feel the right messages are getting out?

Yes, I do. The bottom line is that the results have very important implications for how primary care providers follow and manage the care of infants who have older siblings with ASD. Our study showed that they are at much higher risk for ASD than the general population. These are high risk patients and need to be treated as such by their doctors. Just as internists would perform special tests and surveillance of a patient with risk factors for cardiovascular disease (family history, high cholesterol), pediatricians should be aware that they have a child in their practice who is at very high risk and will need special watching. This is a message that the media attention has really helped us get out.

Can you explain for a lay person how your study controls for families who stop having children due to having an autistic child?

Most previous estimates of how likely a family was to have another child with ASD were based on the rate of families who had two or more children with ASD (divided by the total number of families who had any children with ASD). This did not control for the fact that some of the families included in these calculations had only one child or had their child with ASD last, followed by no more children. For those families, there was no chance that they could have had a second child with ASD, so they shouldn’t be part of the calculations.

The right way to do a recurrence risk study is to only include families who have chosen to have another child, after the child with ASD. That is the research design used by infant sibling studies, so they are better able to estimate the rate of recurrence. I should say, however, that even this study design is not without its flaws. For example, parents may choose to join the study because they are already worried about their child’s development -- if this happens, it can bias the study toward finding a higher recurrence rate than exists in the total population of families with ASD because we might be studying a more affected subgroup of families who have self-selected to participate.

The ideal study design is to enroll families during the pregnancy, before the infant is even born. Other studies at the MIND Institute that I am part of, the MARBLES and EARLI investigations headed by Dr. Irva Hertz-Picciotto, use these methods to best estimate recurrence.

Were the siblings in the study diagnosed substantially earlier than average? Has this provided a way to explore the value of early intervention?

I cannot speak for all twelve sites that were part of the Baby Siblings Research Consortium study, since we did not analyze the age of diagnosis in the first study we published from this large dataset. I can respond based on the smaller sample that comes from the MIND Institute: Yes, our sample is diagnosed significantly earlier than average (which, across studies in the US in the last five years, is between 3 and 4-½). The average age of diagnosis at our site is 24.6 months (ranging from 12 months at the earliest to 36 months at the latest).

You’re absolutely right, these kinds of studies will help us now study the effect of age at intervention to see whether initiating intensive treatments before age two has a bigger impact on development and functioning than starting them later. At several sites around the world, including the MIND Institute, studies of this type are currently underway, since the infant sibling studies they are associated with have the opportunity of identifying children so much earlier.

Has there been any exploration of the role of epigenetics? Would you expect to see manifestation of trans-generational epigenetics in the sib study?

The studies I have done so far have not conducted genetic or epigenetic analyses, but this is clearly a fruitful area of future investigation.

Do you think that in these families with more than one autistic child and who might also have other autistic relatives, there's a stronger genetic component than, say, in a family with three children, only one of whom is autistic and no other known autism? If so, are there studies looking at these as differentials?

Our study did look at the difference in rates of ASD recurrence if a family had one child with ASD versus more than one child with ASD. The overall rates were different, with families with more than one child with ASD having, on average, a 32% recurrence rate, while those with one child had, on average, a 20% rate. There were too few families in even our very large study to examine the specific scenarios you ask about but all the sites continue to collect data. Someday I hope we will have a sample large enough to ask specific questions about whether the recurrence rate is elevated if there are second or third degree family members (cousins, uncles, etc) with ASD.

Are you looking for or noting Broad Autism Phenotype characteristics in the sibling study? How and, if possible to discuss, with what results?

The broader autism phenotype is not a diagnosis or a classification with a specific definition, but it is a concept that describes milder, subclinical features of ASD, which do not cause significant impairment. We are very interested in how often this occurs in our sample and when such characteristics might first become apparent.

We study the infants in a variety of ways -- we examine their language, social, cognitive, temperament, attention, and behavioral characteristics, looking to see if difficulties in any of these areas occur more often in the High Risk group than in the Low Risk group. If so, this might be evidence of the broader autism phenotype. So far, we have found that some mild social and language delays are seen in some of the siblings, such as delayed development of joint attention and delayed language.

What is interesting is that delays in these areas are usually thought of as early signs of ASD (which they can be), but what we are finding is that they do not always inevitably predict ASD. Some children will show delays of this type but then go on to have non-ASD outcomes (which we might call the broader autism phenotype). So the good news for families is that early delays in these areas do not always translate into a later diagnosis; many of these children will turn out to be developing pretty much in the normal range at age 3, with possibly just some mild “quirks” or stylistic differences. This can be reassuring news to worried parents.

Regardless, we always help families find appropriate interventions right away. This is unpublished data that has not gone through peer review yet (we are preparing the paper right now), so I’m afraid that I can’t share many other details at this point.

Are you seeing any differentials in siblings of children with what they call "regressive" vs non-regressive autism? If genetics analyses are involved, are there any patterns in terms of genetic hits for siblings of autistic children stratified by subsets of any kind?

The work out of our infant sibling study at the MIND Institute suggested that many more children experienced a regressive-like course than previously thought. We intensively studied a small sample of 25 children from birth through age 3, taking detailed measurements of their social abilities every 6 months or so. What we found is that the majority of the children (over 80%) showed fairly good social abilities, in the average range, at 6 months, but over time they lost interest in people and became less socially interactive.

This data could be interpreted as evidence of a regression in these children. It suggests that regression may be much more common than previous studies have found. It was just easier to detect using our study methods, since we were giving the children detailed examinations every few months, rather than asking parents to recall detailed information from several years ago.

In terms of genetic analyses, this is something that the Baby Siblings Research Consortium is very interested in studying and investigations are in progress to collect and analyze this data. The work is ongoing but hopefully we will have some answers in the near future … check back!

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Disclosure: My youngest daughter participates (with variable compliance) in the Infant Sibling study. Sincere thanks to Emily Willingham and Matt Carey for contributing to the question set. -SR

Wednesday, March 28, 2012

TPGA Welcomes Five New Affiliate Editors

We have big, wonderful, very exciting news: Five new affiliate editors have joined Thinking Person's Guide to Autism:

Kerima Cevik
Rachel Cohen-Rottenberg
Rob Gross
Kassiane Sibley
Sandy Yim

We believe our new editors will bring unique perspectives to TPGA, and make us a better, more inclusive autism resource. We chose them because we respect them, we think they're smart, compassionate, and fair, and we think they've consistently shown us where the holes lie in our autism coverage.

You'll see them on our Twitter and Facebook streams, as well as commenting on this site for TPGA. Please join us in welcoming them, heartily:

Kerima Çevik is the neurotypical, married mother of two children, a world traveler, occasional blogger, parent activist for autism, and participant in the Autism Education Project. She is currently homeschooling her adventurous, grade-school-aged son Mustafa, who is intensely Autistic and nonspeaking. Mrs. Çevik gave written testimony before the Maryland State Assembly in support of HB269/SB540 Child With A Disability - Individualized Education Program, which became law in May of 2010 and is currently working to present legislation on Autism training for first responders. Her first effort was HB 361, a bill modeled on similar legislation presented before the Massachusetts Legislature by Autistic disability advocate Lydia Brown. HB-361 was shelved after a regulatory agreement to mandate an autism awareness program was reached instead. Mrs. Çevik’s professional and personal experience spans several countries, continents, and cultures, and includes work in translation and localization, project management, language instruction, and information systems management.

Rachel Cohen-Rottenberg is a wife, mother, writer, and artist who was diagnosed with Asperger's syndrome at the age of 50. She holds a bachelor’s degree and a master’s degree in English from the University of California at Berkeley, where she worked as a graduate student instructor in English composition and literature. After many years as a technical writer and homeschooling mother, she now lives a quiet life in rural Vermont, where she writes and publishes the blog Journeys with Autism (www.journeyswithautism.com) and the site Autism and Empathy: Dispelling Myths and Breaking Stereotypes (www.autismandempathy.com). She is also the author of three books; her latest work, Blazing My Trail: Living and Thriving with Autism, is a sequel to her memoir The Uncharted Path.

Rob Gross is the father of two adult children, one of whom is an Autistic self-advocate. His main involvement in the autism communities is in supporting the Autistic civil rights movement. Rob is particularly interested in the internalization of oppression-- how marginalized groups learn to view themselves through the eyes of those who devalue them. His work comes from his own experiences of anti-Semitism and class bias. He lives with his family in Oakland, CA and blogs at Not the Way it Seems (notthewayitseems.wordpress.com).

Kassiane Sibley is a vintage 1982 autistic and epileptic adult. She has been doing the autistic advocacy thing online and in person this whole century, starting with message boards and progressing to attending conferences, writing, blogging, and generally speaking truth to power. Kassiane is particularly passionate about teaching autistic kids to advocate for their needs from an early age, autistics being able to access services on their own, keeping people out of the social services cracks, banning strobe lights in public, and twice exceptionality. In her non-online life, she teaches gymnastics, tutors math and science, and is hoping to get into med school in the next year or two. She wrote for Ask and Tell (Shore et al 2004), and has spoken at /been yelled at/generally made waves at at a number of conferences. Kassiane currently blogs at Radical Neurodivergence, where she says what she really thinks.

In a former life, Sandy Yim was a teacher, passionate about giving urban students access to a life of their own choosing. Living with Aspergers, auditory processing disorder, multiple food allergies, and a seizure disorder allows her to draw upon that same determination to make life happen, which she blogs about at Aspie Teacher. She lives in New Jersey with her husband and their dog Molly, who unfortunately can never be a service dog because she demands 24/7 service.

Tuesday, March 27, 2012

The Most Spectacular Thing of All

Susan Senator
www.susansenator.com

In 1993 when Nat was first diagnosed with Pervasive Developmental Disorder, (PDD) under the “Autism Umbrella,” I asked the doctor what do you do about that, what is the treatment?

“Education,” he replied. He went on to tell me that no one really knew which approach was best, and that there were many schools of thought. “It is up to you to observe and figure out what works for Nat. When something is right for him, you’ll know,” he continued enigmatically.

But I envisioned Nat at school -- though back then I could barely picture that, he seemed so little and vulnerable -- and this advice seemed wrong.  He needed me, not school, I remember feeling. He would be bewildered by school. Lost. But the doctor was saying that he should actually be in school for as many hours as possible. (No one said “at least 30-40 hours a week of intensive one-on-one education. If he had, I would have resisted it.) I did not believe school would work for Nat.

As pre-historic and simplistic as his diagnosis and advice were, the doctor, bless him, was completely right. School, education, a teaching environment has made the greatest difference in Nat’s life. Even when he was in programs that were not the best, he progressed, he did what he could. And when he participated in programs that were right for him, he took off. (Please do not read this as a paean to ABA, just because that was Nat’s best school program. I am not convinced it was the ABA per se that did anything for Nat; more likely it was the one-on-one attention and repetition, and very kind teachers, that did the job for him.) And no, he did not take a rocket ship to Normal. He did not de-Auticize (my favorite term, coined by artist, autism mom, and dear friend NancyBea Miller). Nat maintains his diagnosis -- or one of them, they’ve changed a lot over time, but Nat remains basically pretty deeply involved with autism, PDIA (my own jargon, feel free to use it and make up your own, more accurate versions).

Nat’s education helped him in so many ways. He learned the importance of paying attention to others, of trying to communicate. He learned all the basics: letters, numbers, shapes, reading, writing, typing ... And then when he was 14 we had a conversation with the school that made my heart hurt: they asked us to start shifting him out of academics and into “pragmatics.”

This hurt, but it was hands down the best decision we ever made for Nat so far. Why did it hurt? It hurt my own vanity, to realize once again that this child of mine was not [you fill it in]. He was not going to learn history, chemistry, algebra, or read books at his grade level. He was going the vocational track. He was going to have to focus on what I thought of as the Dull Kind of Adult Life. He was going to have to learn ugly things like food preparation, laundry, house cleaning, street safety, community behavior & appropriateness. No Latin for Nat. Essentially, nothing I could brag about to anyone. Learning Activities of Daily Living, ADLs, and training in basic job skills like serving meals or making boxes -- who in my world did that? Who in my family of doctors, lawyers, educators? My Harvard Medical School Dean neighbor?

I emphasize this ugly shame I felt to illustrate that it was all about my own vanity. That and the death of certain hopes that I had/have for my children, and why not? I belong to a social class that believes in the American Dream, of working your ass off and educating yourself to reach the pinnacles of what the world has to offer.  In my world, it is not just a given that you do college, you also have to go to graduate school. You choose a career that hopefully helps the world in some way. You live in an area where they have the best public schools (you never do private because you believe that social programs and public sector investment are what make the US great), you have children and you pass on the same values to them.

So what happens if your child does not fit that mold? Well, in my case, once I got over the fact that there was only one way to view success — which began with an Ivy League education — my world broke wide open and beautiful things spilled out, like a treasure chest. I laid my eyes on the most spectacular thing of all: Nat was really learning and using what he was taught. Nat could generalize those new skills, too. He learned how to do laundry there, and so he could do it here (with assistance). He was used to cleaning, shopping, making lists, keeping himself safe and healthy, because that is what he learned in school. His mind was not wasted; it was ignited. Suddenly everything made sense to him; everything had real-world application, and for a guy who craves context, that was just perfect for him.

Thus Nat -- still PDIA -- made the leap to living outside of our home, and to working out in the world with hardly a ripple. Do you realize how marvelous that is, a guy with as many challenges as Nat has -- (yes, he has often been officially termed “low functioning,” and “severe.” Even by me, sigh.)?  It is nothing short of the American Dream.

If you open your mind, your definition of education to fit the full spectrum of human beings, then ADLs and job training are truly valid forms of schooling. I believe that all children would benefit from this shift in perspective and approach. Sure, the classics matter. Of course most academics still do matter. But, in addition to that, we must train our children to live in the world. All children, whether diagnosed or not, should be trained in social competence, independent living, and vocations. Education is and always was the way out of darkness.

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This post was previously published on Susan's Blog as "Education Is the Answer."

Monday, March 26, 2012

Sarcasm 101

Cheryl Dorfman
www.littlebitquirky.com

I am a sarcastic person. I mean a really sarcastic person. I can't help it; I just am! When I was pregnant, my husband and I always joked that our unborn daughter better have a good sense of humor if she was going to survive with us as parents. This "sense of humor" included having to put up with sarcasm.

One trait of people who have autism or Asperger's is that they can have a really hard time distinguishing when somebody is being sarcastic -- they can be very literal. For example, if you ask an Aspie if the "cat's got your tongue," they may wonder if you somehow think a cat ran off with their tongue.

To help my daughter out in this area -- and because I just cannot turn off my sarcasm -- I continue to use my sarcasm non-stop around her. Because of this, she has gotten pretty good about figuring out when I'm being sarcastic. She doesn't always succeed, however. There was the one time that I was commenting that she was the most beautiful girl in the world, and she laughed and said, "You're being sarcastic, right?" I had to tell her I wasn't -- that she really was the most beautiful (I would have thought she would have known that one!).

As she's getting older, however, she's picking up on the sarcasm. One time when I was driving, a  driver almost plowed into our car. Always (okay, usually) careful not to curse in the car with my daughter in it, I commented, "Nice driving!" My daughter piped up from the back seat, "That must be sarcasm because that driving was horrible!"

Now that my daughter has turned eight, she's not only getting good at understanding sarcasm, she's actually beginning to use it herself. Oftentimes when I tell her something, she'll roll her eyes and say, "I know" (while making the word "know" into a two-syllable word). She's also been know to retort something along of the lines of, "For the five thousandth time, I said...." This may not sound like a big deal to parents of kids who are not on the spectrum, but it's a very big deal for a child on the spectrum.

Nevertheless, I sometimes wonder why I took so much time in teaching sarcasm. It might not have been one of my most thought-out plans!

Friday, March 23, 2012

Every Kid Is A Person

Jennifer Byde Myers
jennyalice.com
I wasn't asked to have a conference with Lucy's teacher, Ms. June, but Lucy asked me to make an appointment just the same. I sort of wanted to check-in anyway given that my daughter is already a different kind of person than I was at her age with her own way of learning things and her own worries and passions.

She is enough like me that I see myself --my mannerisms, for example, and I can hear my inflections in her voice, and yet she is enough different that I do not always understand what makes her tick when I tock. So I like to get other people's perspective on her whenever I can. We have lots of people who report about Jake to us, since he can't tell us his stories himself. There is even a journal that travels back and forth to school each day for Jake, but my daughter with her 31 other classmates... it would be impossible for any teacher to write a note about each child, each day.

Sometimes I get anxious before I meet with teachers; education is different than the business world where I am generally confident. I have a reverence for teachers, and admiration for their service. And they do something I'm not sure I could do each day. Teachers, especially those that have been around for awhile,  really know kids, so any comment about my child from a teacher is founded on having known hundreds and hundreds of children, and those opinions carry more weight to me.

Of course the meeting went just fine. Lucy is on track and she is a good kid and she has friends, and she keeps writing the number 4 backwards. I saw a sampling of her work where I can see how much she has improved in just the last month with her letters and her coloring. Her pictures have great details and she seems to get the essence of the stories she hears. She's doing well. I was relieved, but I can't help but think there is more we should be doing.

Lucy's teacher and I chatted a bit more, debating piano lessons versus violin, tennis instead of soccer. Then about how being tall generally gets you more responsibility at an earlier age, at least that's what I experienced. And when Ms. June mentioned that Lucy shows a nice maturity she quickly told me about something that happened just today.

There is a 'little person' at Lucy's school, and apparently some children had teased this boy at recess. When Ms. June took them back to the class (after having the story related to her buy the yard duty aide) she sat the children down to have a discussion about differences. They talked about how it would feel to be made fun of for something that is just a part of you. They talked about all kinds of differences there can be, and Ms. June said that as soon as the conversation started Lucy raised her hand. I am paraphrasing but I have now heard the story from both Ms. June and Lucy, and they each related about the same thing.

With conviction, Lucy told her classmates:
My brother has autism, and he has a wheelchair. He's different. But he still likes to decide things and make choices. We offer him two choices because he doesn't communicate like we do, but he still wants to decide things. Every kid is a person, so you should just say, "Hello." and ask, "How are you today?" because even if they don't talk like you do, you should still say hello.
There I was, worried about how far along she is in reading, and stressed about the number four... and as it turns out, some of the hardest things to teach, respect, accepting differences, presuming competence..she's understanding those things. She knows her non-verbal brother has opinions and that he deserves to be heard. She knows that "every kid is a person."

And perhaps I am most pleased that she has it written on her heart to stand and be heard. I'm grateful that she could face her peers and unabashedly advocate for that young man, and she did it on her own without prompting or practice. I am so proud of her.

Wednesday, March 21, 2012

Interview: David Niemeijer, Founder & CEO of AssistiveWare

AssistiveWare's Proloquo2Go is one of the most popular software programs and now apps for people who use AAC -- Augmentative and Alternative Communication. They also make the excellent social story app Pictello. David Niemeijer is the founder and CEO of AssistiveWare, and talked with TPGA about the past, present, and future of AssistiveWare and their apps.

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Tell us about AssistiveWare -- how it got started, when, and what products you make.

AssistiveWare has its roots in 1995 when Giesbert, a friend of mine, had a serious car accident and broke his neck. I developed KeyStrokes, an on-screen keyboard for the Mac so that Giesbert could not only type using a HeadMouse but also access all the keyboard shortcuts in Photoshop (see http://www.assistiveware.com/giesbert.php). Later I released KeyStrokes as freeware but got so many requests for improvements that I decided that if I was to make all those improvements I would need to cut down on my university job and start a software development business.

AssistiveWare was founded in 2000 and over time I developed software for Mac OS X to provide computer access for people with physical impairments (KeyStrokes and SwitchXS), vision impairments (VisioVoice), speech impairments (Proloquo) and reading difficulties (GhostReader). After the iPhone came out and Apple allowed the development of third party software, I started working on Proloquo2Go, the Augmentative and Alternative Communication (AAC) solution that was eventually released in April 2009 and became the foundation of the consumer device based AAC revolution. By now AssistiveWare, still based in Amsterdam, Netherlands has expanded to a small but dedicated team with team members based in three different continents. In 2010, another product for iOS was released, the visual story telling app Pictello and in 2011 another Mac OS X solution for people with vision impairments called Magnilink iMax was released, distributed by LVI International.

What is your role, and how did your background prepare you for working at AssistiveWare?

I am the founder and CEO of AssistiveWare. While I have a PhD in environmental and agricultural sciences and have been involved in various international projects in that field (I am specialized in land degradation and desertification), I decided to focus on working with and for people with disabilities after my friend Giesbert had his accident.

How was the name Proloquo2Go chosen? [This is something folks at my iPad workshops ask all the time -SR]

Back in 2005, Proloquo was chosen as the name for an AAC solution that AssistiveWare had developed for Mac OS X. It means "speak out loud" in Latin and was chosen because it is really hard to find a name for a product that is not already used in one way or another by another company. For example, most names with words such as speech, speak, voice are already in use by telecom companies. Also, it is nice to have a name that is more international in character than when using English words. When the version for iPhone had to be named, it made sense to call it Proloquo2Go (i.e. the mobile version of Proloquo).

How did AssistiveWare get started making iDevice apps, and what was that process like?

When Apple came out with the iPhone many people asked us to make something like our Proloquo for Mac OS X available for iPhone. Proloquo was a nice application, but not that many people want to go shopping and pull out their laptop any time they want to say something. Proloquo was great for home use and for use by people who mounted a laptop on a wheelchair, but it really needed a more mobile platform. So it made a lot of sense to us to make a version for the iPhone and later add support for the iPad too.

Rather than do a straight port from our Mac application we started from scratch in order to build something optimized for the iOS platform and the way users interact with devices such as iPhone and iPad. It was a lot of work, especially to make things run smoothly on the relatively slow first iOS devices. As early adopters of this technology we had to struggle with a lot of limitations no longer present on the most recent iPhones and iPads. We also collaborated closely with Acapela Group to get their voices ported to iOS as we needed text to speech capability. We continue to further improve Proloquo2Go and are also working on additional applications.

What were some of the first reactions of clients using Proloquo2go on an iPhone? On an iPad?

When we showed it a few months before release at the ATIA (Assistive Technology Industry Association) conference in Orlando the room was packed, including with representatives from all the major AAC device vendors. People were generally blown away. Shocked also by the fact that we were going to sell this at a many times lower price point than any of the traditional solutions. Around that same time we were also beta testing it with close to 100 users and professionals. They loved it. For many this was such a liberation. Having a voice that fitted in the palm of their hand on a device that was mainstream and cool. People just loved it.

After the initial excitement we also received more critical feedback and are well aware that Proloquo2Go wasn't perfect. We have made many improvements since and still have many things on our to-do list. There is still so much room for innovation. Version 2.0, a free update planned for April, will be a huge step forward in terms of ease of use but also in terms of new, much better vocabularies. But, we won't stop there: multilingual support, switch access, etc. are all on our to do list for this year.

When iPad came out this greatly expanded the utility of apps such as Proloquo2Go as for many people the larger screen makes it easier to use and allows more language to be readily available. We made sure we optimized Proloquo2Go for iPad the day Apple released iPad. Right now more people use Proloquo2Go on iPad than on iPhone or iPod touch.

Are you a dedicated device company as well as a software company?

We do not make dedicated devices. We are a pure software company. What I can tell you is that iPads and iPod touches with apps such as Proloquo2Go are used by the 95% of people who could benefit from a high-tech AAC solution but were never able to afford it, did not have access to funding or were going to schools that could not afford this kind of technology. We also see that much younger children (as young as 2-3 years old) get access to this kind of technology now, while in the past kids would not get access to devices until they were a lot older. The dedicated devices where just too heavy and expensive for young kids.

Dedicated devices often offer special access solutions such as eye tracking or head tracking. People needing that kind of technology cannot yet use an iPad based solution.

What was the evolution of Pictello, your social stories app?

Pictello originally started as project  for a friend by Jennifer Marden, our SLP-in-residence. We got to speak about it and I offered her to bring the project to AssistiveWare. This was in late 2009. After that we continued working on it for almost a year, adding support for text to speech, a wizard mode for creating stories so that kids could easily make their own stories, a nice user interface with attractive artwork, etc. It was released in the fall of 2010. We have added support for sharing stories in various ways and more recently have made the application multilingual, with the user interface localized in half a dozen languages and free access to 50 naturally sounding voices in 23 different languages and dialects.

What have you learned from other AAC app developers' products, and what do you think they can learn from yours?

When we develop products we do not pay much attention to what others are doing, rather we listen to users and their wishes and dreams. We do not want to simply copy ideas from others, but want to always see if we can find better solutions to the common problems all developers are trying to solve.

If you look too closely at existing products you run the risk of replicating the existing solutions for a problem, instead of opening up the way to new, possibly better solutions. As a result one can sometimes make mistakes, but those can be fixed. However, thinking outside of any of the current boxes allows for true innovation. Just like we never looked much at the dedicated devices we also do not look much at the apps of our competitors. Most AAC apps on the App Store today are very limited and often poorly designed, some are really good and well done.

We don't really spent time on either category, but just keep focused on our own course and keep listening to users who email us, who are active on our Facebook page -- and I personally often visit users and schools to see how the software is being used, listen to people's needs and dreams and I use such visits as a source of inspiration.

I think that with Proloquo2Go we have made several important contributions to the field. We have shown that AAC can be effective on a consumer device and that it can be less costly and therefore be within reach of many more families, schools and individuals. I also hope that we woke up the industry that it is not all about bringing out newer hardware, but that there is a lot that can be improved in terms of the software and particularly in terms of user-friendliness. I truly hope that our competitors will pay much more attention to the software side than has been done traditionally, making software easier to use and looking much better.

Monday, March 19, 2012

Remember One of Our Own: George Hodgins

Zoe Gross
illusionofcompetence.blogspot.com

Zoe and her father Rob light candles
in honor of George Hodgins.
Photo © 2012 Steve Silberman
Zoe is an autistic self-advocate. She recently organized and led a vigil to remember and honor George Hodgins. She read the words below at the ceremony, which was attended by self-advocates and their supporters -- many of whom had been part of George's life. Many of whom spoke out themselves.

----

Last Tuesday, George Hodgins was shot and killed by his mother, who then killed herself. George lived here in Sunnyvale and he was 22 years old. I didn't know George, but I can't stop thinking about him. Maybe it's because we have a lot in common -- we lived near each other, we were the same age, we're both autistic, although we led very different lives. I would like to have met George, but I can only mourn him. And I can try to make sure that his story isn't forgotten.

In the wake of this tragedy, I read a lot of articles that asked the readers to imagine how George's mother must have felt. But I didn't see a single article that asked the reader to empathize for George, to imagine how it feels to see your mother point a gun at you. I've seen a lot of people talking about how hard it must be to live with an autistic relative, but I didn't see anyone talking about how terrible it be to die knowing that your parent, who you love and depend on, has decided to hurt and kill you.

Because he was autistic, George is being erased from the story of his own murder.

The story of George Hodgins's death is being discussed and presented as a story of a mother who snapped, and the story of other parents who have felt the same way. It's being told as a story about a lack of services for families with special-needs children, as though a lack of services is a justification for murder.

When disabled people are murdered by their families, this is the story people want to hear. It's the same story that we saw in newspapers after Katie McCarron was murdered, and after Jeremy Fraser was murdered, and after Glenn Freaney was murdered, and after Zain and Faryaal Akhter were murdered. The story goes like this: it is understandable that someone would kill their disabled relative if they don't get help to care for them.

I don't think this is a true story.

Why is the story being told this way? Because we live in a world that doesn't acknowledge the value of our lives as disabled people. Because so many people in our society can't imagine a disabled person living a fulfilling life, so they don't see the tragedy and the wasted potential when one of our lives is cut short.

As disabled people, we have to take a stand against this kind of thinking. We have to get the word out that our lives matter, that our lives are our own stories and not just the stories of our non-disabled parents and relatives and caretakers. We have to let people know that they are missing part of the story.

Because the story of George Hodgins's murder is also the story of the disabled community losing one of our own. It's the story of the other disabled people who were murdered by their family members, and it's the story of the society that thinks so little of people with disabilities that these murders are all too often justified as "understandable." Most of all, it's George's story -- the story of a young man who enjoyed hiking, who was always looking to learn new skills, who had his whole life in front of him.

Now George is gone, and only his memory remains, and already that memory is being distorted by people who want to tell his story and leave him out. That's not going to happen tonight. We're here to remember the real story.

----

Zoe's words about  George Hodgins were previously published by ASAN, the Autistic Self-Advocacy Network, and at Zoe's own site illusionofcompetence.blogspot.com.

Friday, March 16, 2012

Autism and the Circle of Friends

Emily Willingham
biologyfiles.fieldofscience.com

We began by failing our son, TH. We failed to be vigilant enough about his reputation. We were lax in monitoring the growing perception of him as a bully, while simultaneously, he was on the receiving end of bullying all day, every day. His reputation as a bully spread beyond the school walls and playground boundaries, leaking into our neighborhood, speeding through wires and wireless, the talk of the bus stops. His size, his odd behaviors, his loud and unexpected non-sequiturs, and his violations of personal space drove the rumors on. When we learned all of this, we were devastated. Then, we heard about the Circle of Friends (COF) program.

The basic principle of this program is that placing knowledge in the hands of others also means giving them understanding and compassion. For us, that meant that somehow, we had to get across to our son’s classmates, and by extension their parents, as much information about our son as possible. We had to reconstruct people’s attitudes about TH, and in this case, because we’d let it go so long, we had to do it across all classrooms in his grade.

What is this circle? Parents present information about their child to their child’s peers, telling the children more about that child’s specific expression of their different ability or disorder. After the children have heard the information, they can choose whether or not they want to become a part of that child’s official Circle of Friends. These are not friends out of pity, but real friends who do what real friends do: play, interact, support, advise, and guide.

Initiating a COF program takes three basic steps, all modifiable to personal requirements. The first step is the presentation to peers, involving the parent and possibly the school counselor or perhaps a special education specialist. Second is the letter that goes home to parents, explaining COF and requesting permission for a child who’s interested to participate. Finally, there is the follow-up. While step one is nerve wracking and can be extremely painful (more on that later), this last step requires the most energy and is most variable. It can consist of arranged activities with the friends, either at school or outside of school, with (preferably) or without assistance from school personnel, but all parent organized and guided. This phase also should involve appropriate thank-you notes and updates as needed for the parents of children who joined the circle.

Step 1: The Painful, Nerve-Wracking Part

Our biggest up-front role for this program was presenting our information about our son to his peers. Because we’d let things get so out of hand, we made five of these presentations in a single day, to each class in his grade. First, we presented a slide show about TH to the children, one that TH had reviewed and approved. The counselor explained what autism is. I brought a PowerPoint slide set with pictures of TH doing the things he loves most: studying nature close up, collecting bugs, playing on the beach, doing art, playing chess. I also included pictures of his hugging his baby brother and helping his brothers.

With this approach, kids make a connection. They learn about commonalities in that part of the presentation, and they learn about differences. For example, TH’s special ed teacher talked with them about some of TH’s behaviors that they might find confusing, and we talked through some of them. The children were most enthusiastic about the pictures of TH doing things that were familiar to them. Indeed, you may find it difficult, as we did, to limit the time apportioned to this part because children are so excited about sharing their own experiences with these familiar activities.

One thing to prepare for is brutal honesty. Children are just like that. We heard many negative comments about our son, but we took them as an opportunity to explain what the behavior the child was describing might have meant coming from TH, and how to deal with it (i.e., if he said something odd that they didn’t understand, they could simply tell him that, as a friend).

Step 2: The Permission Slip

The permission slip (click the link for a sample) contained a carefully worded explanation of what we were doing and why. We included a clinical definition of Asperger’s and gave some examples of TH’s social behaviors that might come across the wrong way. We defined COF and its goals. One thing that we didn’t do that I think would have been useful was to include a longer outline of the program on the back of the letter. At the bottom was a simple permission slip for the parents to fill in and sign and our contact information if they had questions.

Part 3: Implementation and Follow-Up

This is the implementation and “thank-you” phase. Depending on the involvement of your school, you may be able to arrange small-group activities at lunch or on the playground with kids who have signed up to be Friends. This part is, however, largely the parent’s responsibility to follow up on and arrange. There are any number of COF activities that you can arrange with parents and their children who have signed onto the program, from meeting at a playground to having “lunch bunches” to bowling or walking a nature trail. Finally, we also had the COF plan read into the minutes of our IEP meeting.

How did it turn out?

In the short run, this program was a huge success for our son. Overall, the children were attentive, curious, and pretty thoughtful. About 40 permission slips came back, agreeably signed. The letter apparently sparked numerous dinner-table conversations about differences and understanding. One of the parents who had complained, belligerently, about our son told a neighbor that he now “felt small” knowing the reality of the situation. We heard feedback like, “This helps us understand so much better,” and “I’m hearing so many good things about the letter,” and “I’m so glad to know more about this.”

TH’s teacher reported that the entire tenor of the classroom changed since we presented, almost immediately. Children didn’t react strongly or negatively to some of the strange things TH did or said. They seemed to understand him better. TH himself seemed more at ease: less flapping, more focus, less humming and vocalizing.

In the long run, however, it fizzled. When TH entered third grade, the classes shifted around from teacher to teacher through the school day, and the student makeup of each class differed. With TH no longer in a self-contained classroom with the same cohort, he was once again immersed in groups of children who didn’t know him well, who didn’t understand him, and who simply did not like him. We removed him halfway through third grade to homeschool him because the school could not rein in the bullying of our son.

That said, I think there are situations in which COF could work in the long term. Certainly, for children in smaller schools and/or self-contained classes, it probably would remain effective over the years. Also, possibly in a different sort of school and district, one that places a greater emphasis on compassion and understanding and less of an emphasis on competition and perfection, something our district is known for and is, I’d say, proud of. Regardless of our long-term outcome, our presentation of COF for our son resulted in the best year of school he’s had, one in which people were truly his friends, one in which he thrived. Even in the short term, that’s a payoff that was worth it. In the long term, perhaps some of those children who listened that day will remember what they heard.

If you’d like more information about COF or documents that explain the program and provide prototypes for the letter and other information, please get in touch with me or see my blog. This program can be a profound way to achieve important change at the individual and community level, and I’d like to see it spread faster than a rumor on a hot parental grapevine.

Wednesday, March 14, 2012

I Don’t Know His Name, But His Face Rings a Bell

Allison Blazek
www.drblazek.com

"While [face blindness] occurs in many people who are not autistic, it is quite common among people with autism spectrum disorders." -Lisa Jo Rudy, formerly of Autism.About.com

image © icanhascheezeburger.com
You are at a party. You are introduced to the wife of an acquaintance. You have met her before over the last ten years, at least three times. She shakes your hand as if she has never seen you. As she walks away, you are likely to think, “She is so rude! She knows she has met me before.” Maybe you say it out loud, and maybe your friends agree with you, having experienced the same thing with her as well.

But there is another explanation. She really does not remember meeting you. She has prosopagnosia, also known as facial blindness. Once thought to be very rare, it appears to be more common than we thought. When people with facial blindness figure out what they have it, they are often relieved. They finally have an explanation for why they cannot remember people and faces. It is not because they don’t care about people, don’t have the intelligence to remember or don’t really try to remember faces. It is just not a tool in their toolshed. Like most things, there is a spectrum with facial blindness. Some people say they never forget a face all the way to those that cannot recognize the face of their mother and father.

How do I know about this? I happen to have a touch of it. I didn’t know that facial blindness existed until recently. I used to wonder what was wrong with me. I felt guilty about it for years. I felt like there must be something wrong with me as a person that kept me from remembering people. I am able to remember my kids, my husband, my siblings, and a few really close friends. Beyond that, it is hit or miss.

My particular form of prosopagnosia includes inability to recognize faces and names.  For example, every year I dreaded our family reunion and the inevitable awkwardness of seeing cousins and aunts and uncles and having no idea what their names were. I might manage to remember how some of them were related to each other, at least group them in families, but that took a few years. Unfortunately, since I only see most of them once a year, if I see them anywhere other than the Blazek family reunion, again, it’s a crapshoot if I will be able to figure out that it is a relative, and it is very unlikely that I will be able to pull up the name. I have started seeing my cousins more often and that has made a big difference.

So how has this affected my life? Is it a disability? In a way it is. I remember being with a group of people who were discussing a girl that was such a snob because she always acted like she didn’t know them. Gulp. That could totally be me. Actually it was me.  I distinctly remember someone telling me in a very rude voice, “You know, we have met several times.” Please let a hole open up in the Earth and swallow me. After that, I was very careful to be neutral when meeting new (?) people in case, um, they actually weren’t new. I have gotten pretty good at this. I will either say “Nice to see you,” “How are you?” or some other phrase that fits both new and old peeps. It’s a skill, like any other.

After my children were diagnosed with Asperger syndrome, I learned about facial blindness. I was actually quite relieved. I knew I wasn’t just a cad, I actually have a disability. Knowledge = Power.  Now that I know this, I can without embarrassment, explain it to people. I have a name for it. I don’t have to say, “I’m a complete jerk so I won’t remember your face or name if I see you again.” Instead I say, “I have facial blindness, so if I see you again and act like I don’t know you, please come up to me and tell me your name and how we know each other.” I know that sounds weird, but it has really worked for me. I was just at a wedding and a very nice person whom I truly really like approached me. I was thinking, crap, she looks like someone I might know. She came up and introduced herself and reminded me how we knew each other. Once she did that, I knew exactly who she was. Even though I have met her kids many times, I would not recognize them and have no idea what their names are. I did know their names during my conversation with her, because she reminded me. But I’ve forgotten those names. I can pull her name up at the moment, but it will be gone by next month, unless I see her before then.

Another example: I introduced myself to a doctor at the hospital where I work. He told me we had met before a few times. He said it in a really nice way. I explained the facial blindness and that I might just do it again six months from now (which I did, dammit). He was actually very amused by the whole concept. So is it a disability? It can be, and like most disabilities, it is possible to figure out coping mechanisms.

I have developed a surprisingly positive perspective on this “disability.” In my case, now that I know what it is, facial blindness really suits my life and my career. I am a primary care physician in a large town, but in a neighborhood that acts like a small town. Many of my patients are neighbors, related to each other, friends with each other, whose kids go to school together. Just going to the grocery store or the local café, I may see a handful of patients.

Most doctors would have a hard time truly separating out their life as a doctor from their life as a neighbor and friend. This is not a problem for me. I love my patients and spend more time with them than most doctors. I am interested in what makes them tick, what makes them happy and sad. When I see them out in the community, I really have no idea who they are unless they tell me. Even if they tell me they are a patient, I have no idea what is going on with them medically. Without opening their chart and reading what is in there, they are just Joe Patient. Once I do see them back in the office, and open their chart, the whole story comes back together and I know exactly who they are, what problems affect their lives.

I don’t know how to explain it except to say that my patients don’t have to worry about my gossiping about them.  If I am lucky enough to recognize them, I will likely not know if the person they are with is spouse or lover, even if the other person is my patient. By being unable to recognize them in the community, I ensure full patient confidentiality without even having to make an effort. It’s an unexpected “benefit” of having a social communication disability, but it’s one that in this case works to my advantage … and my patients’ advantage.

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Dr. Oliver Sacks discusses prosopagnosia:

Monday, March 12, 2012

What the UK High Court's Ruling on John Walker-Smith Means and Doesn't Mean

Liz Ditz
lizditz.typepad.com

On March 3, 2012, Mr. Justice Mitting of the UK's High Court of Justice ruled that the UK's General Medical Council (GMC) had acted improperly in Professor John Walker-Smith's hearing on charges of serious professional conduct, and therefore he quashed both the finding  of serious professional misconduct and the sanction of erasure.  (You can find the entire ruling at http://www.bailii.org/ew/cases/EWHC/Admin/2012/503.html.)

It's important to be very clear about what this ruling means. Mr. Justice Mitting did not find that Professor Walker-Smith's actions were medically necessary or ethical. The ruling does not exonerate Walker-Smith. That was not what the hearing was about. Mitting was only ruling on the conduct, the decision-making, of the GMC's Fitness to Practice panel. More broadly, Mitting found aspects of the GMC's procedures to be flawed.

And Mitting's  ruling has nothing to do with the retraction of the 1998 paper. It's still retracted. It does not validate Andrew Wakefield's integrity, or affect the likely outcome of Andrew Wakefield's defamation suit in Texas, (see below).

Mr. Justice Mittings wrote in his opinion:
"There is now no respectable body of opinion which supports [Wakefield's] hypothesis, that MMR vaccine and autism/enterocolitis are causally linked."
The Back Story 

On October 15, 2004 charges of serious professional misconduct, brought by the UK's General Medical Council (GMC) against Dr. Andrew  Wakefield, Professor John  Walker-Smith, and Professor Simon Murch, were sent a to a Fitness to Practice Panel.  The charges related to the medical treatment of 12 children between August 1995 and February 1997. The findings from the treatments were reported in the study "Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children" published in The Lancet on February 28th 1998.

The Fitness to Practice hearings began July 16 2007 and ran for 217 non-consecutive days, the longest hearing in the GMC's history. (You can find a a partial transcript here).  On May 24th, 2010, the panel ruled that  Dr. Wakefield and Professor Walker-Smith were guilty of serious professional misconduct, but that Professor Murch was not. It ordered that the names of Dr. Wakefield and Professor Walker-Smith be erased from the register of medical practitioners.

Both Dr. Wakefield and Professor Walker-Smith appealed the ruling. Dr. Wakefield subsequently withdrew his appeal, but Professor Walker-Smith did not.

But there's more.

The Fitness to Practice hearings came about because of the published investigations of a UK reporter, Brian Deer.  Although he had previously published on vaccine issues and scandals, Mr. Deer paid scant attention to Dr. Wakefield's activities from 1998 to September 2003, when he was approached by an editor at the Sunday Times to investigate the MMR scare. On Sunday, February 24, 2004, the Sunday Times published two articles by Deer: “Revealed: MMR Research Scandal and “MMR: The Truth Behind the Crisis.” An interview with The Lancet's editor, aired before February 24, caused the government’s Health Secretary to announce that he believed that the General Medical Council, which licenses all UK doctors, should investigate the matter. Mr. Deer cooperated with the GMC, supplying details that were not included in the articles.

A few days after Deer's articles were published, 10 of the original authors of The Lancet article (including Professor Walker-Smith) published a partial retraction:
"We wish to make it clear that in [the 1998] paper no causal link was established between MMR vaccine and autism as the data were insufficient. However, the possibility of such a link was raised and consequent events have had major implications for public health. In view of this, we consider now is the appropriate time that we should together formally retract the interpretation placed upon [the] findings in the (1998) paper, according to precedent."
After the February London Times article, Deer also made a documentary-exposé on Wakefield's activities, which was aired in November 18, 2004. In response, on January 31, 2005, Wakefield filed two libel suits, one against Deer and the television channel; the other was against Deer and his website, which contained many background elements to Deer's published work.

 Filing suit against Deer was a mistake on Wakefield's part.  It both motivated and enabled Deer to dig deeper into Wakefield's conduct before and during the research on the 12 children.

As a part his defense of these two suits, Deer was granted limited access to confidential, full medical records of 11 of the 12 children in The Lancet project. Deer also used a new legal ruling granting Freedom of Information (FOI) requests, to gather information on Wakefield's manipulation of data in the Lancet report and on his business interests. Wakefield  dropped the suit on January 2, 2006, and was ordered to pay legal costs.

Deer attended every day of the GMC hearings, and became aware of even more inconsistencies in the histories and pathology findings of the 12 children whose cases were reported in the Lancet. As a consequence, The British Medical Journal commissioned a series of articles from Deer, which ran between January 5, 2011 and February 7, 2011.

In January 2012, Wakefield filed a defamation suit against Deer, Godlee, and The British Medical Journal in Travis County, Texas. http://www.courthousenews.com/2012/01/04/BritMedJ.pdf. In the US, some states have Strategic Lawsuits Against Public Participation (SLAPP) laws. Texas has just enacted an aggressive anti-SLAPP law.
Anti-SLAPP laws, for those not familiar with them, are statutes allowing defendants who have been sued based on their speech to force the plaintiffs to establish they have a valid basis for their suit before going forward, and to collect attorney fees if the plaintiff fails. 
On March 9, 2012, Brian Deer, Fiona Godlee, and the British Medical Journal countered Wakefield's suit with an anti-SLAPP motion. (Read the introduction and links to additional supporting material: http://briandeer.com/solved/slapp-introduction.htm)

Reactions to Walker-Smith suit by those who regard Wakefield as a disgrace to medicine:
Reactions to Walker-Smith suit by those who regard Wakefield as a medical hero
Reactions to Wakefield's defamation suit and the anti-SLAPP response by those who regard Wakefield as a disgrace to medicine:
Reactions to  Wakefield's defamation suit and the anti-SLAPP response by those who regard Wakefield as a medical hero:
  • None as of March 11, 2012 at 10:00 pm PDST
News reports

Saturday, March 10, 2012

"Don't let your children grow up in a world where society devalues their lives."

Lydia Brown 
autistichoya.blogspot.com

To the parents of Autistic children:

We need you.

Sometimes in public discourse, Autistic adults and non-Autistic parents disagree over very important issues that affect each of us personally. Sometimes this disagreement is spectacularly explosive.

But there is no way for the autism and Autistic communities to move forward without creating some type of group cohesiveness. Yes, that means that we will have to enter into painful dialogue and discourse, and yes, that means we will have to accept the validity and legitimacy of the ideas and feelings of people with whom we may disagree. It does not mean that we have to set aside all of our differences, because that would make us self-deceivers. But it does mean that we have an obligation to each other and to ourselves to recognize what Dr. Martin Luther King Jr. called "inescapable mutuality."

Every Autistic child, youth, and adult had parents. Many of those parents were non-Autistic, and some were Autistic, and others were likely diagnosable as Autistic. Many, but not all, of those parents were good parents. Most had very good intentions and wanted what they understood to be the absolute best for their children. Others were abusive, emotionally or physically, and did not care much for their children's welfare.

And parents have always been deeply involved in the conversations about autism. Many times, non-Autistic parents have been the primary and only voice speaking about autism while Autistic adults have been excluded from the conversation. Many times when Autistic adults ask or demand to be included meaningfully in conversations about issues that affect us, we are told that we don't or can't represent or understand the breadth and diversity of needs and abilities of the whole Autistic population.

The truth is that all of our voices are valuable, important, and necessary, particularly when we disagree among ourselves and between each other.

The truth is that we do not merely deserve to be validated, but that we must be.

The truth is that we, Autistic adults, youth, and children, need you. We need you to support us. We need you to love us. We need you to listen to us, and to believe that whatever we have to say, write, sign, draw, or communicate in any other way is of vital importance whether or not you agree with it.

Without your help and love, we might not make it in the world as adults. Many non-Autistic parents worry about what will happen when their Autistic children will age first into adolescence and then into adulthood. They worry about whether their children will ever be able to live independently, and if not, what options their children will have to live as independently as possible. They worry about whether their children will ever be able to get and keep a job, and possibly support themselves.

And the truth is that the best outcomes can occur only when all involved work to give us as much independence and self-advocacy skills as possible. The more we can learn to express ourselves and communicate with the people around us, the better we will be able to advocate for our own needs and desires. The more we can learn to cope with anxiety and sensory problems, the better we will be able to navigate a world that was not built with the needs of Autistics in mind. And you, parents, are placed in a unique position to be able to encourage the lifelong development of self-support and self-advocacy skills.

Sadly, many parents of Autistic children do not receive support from their families, friends, neighbors, or communities. You may feel isolated, alone, and overwhelmed. Most of you did not expect to have an Autistic child, and most of you don't enter the world of autism understanding all of its subtle nuances -- how to negotiate an IEP, how to navigate the confusing array of "therapies" and "interventions," how to plan for the future, how to appropriately measure and evaluate your child's development. Being thrown into a new and unexpected situation can be confusing and stressful. It can be worse when family members refuse to acknowledge your child's special needs or worse yet, blame your parenting for producing a "defiant" or "stubborn" child. Many of you probably cry when you think no one can see you.

But there are some things we want to tell you.

Don't give up. No matter how overwhelmed you might feel at times, we need to know that you are determined to do everything you can to ensure that we have a place in the world as we grow into it. We need to know that of all people, our parents have not given up on trying to make the world a better place for us to be.

Seek support. National organizations like the Autism Society, the Autistic Self Advocacy Network, the Autism National Committee, and the Autism Women's Network have chapters and members across America and sometimes abroad (and frequently have partner organizations and connections to people in other countries.) You will not like or agree with everyone you meet in person or online, but you have to surround yourself with a support net of people -- whether other parents, Autistic adults, or professionals -- who can appreciate the struggles that you and your child face.

But seek support especially from Autistic adults. Even if you disagree with the ideas or beliefs of some Autistic adults, we are people who have been in the same places as your child. We share many experiences, including the ways in which we experience and perceive the world around us. Some of us were head-bangers. Some of us cannot speak. Some of us cannot live independently. Some of us went to segregated classes or schools. Some of us went to mainstream schools. Some of us also have mental health conditions, and some of us have also been tested as gifted. Most of us stim. Some of us can "pass" for "normal," but many of us can't. We are not identical to each other or to your child, but we can identify with your child. We have been Autistic our entire lives, and we have survived the transition from childhood to adulthood. We can offer insight into the ways your child behaves, acts, and processes information from firsthand experience. And we can tell you what has worked and what hasn't when we had to transition into adulthood.

We, Autistic adults, are the continual reminder that what you do as you raise your children will have a lasting impact on the next generation of Autistics. What our parents did for us -- both the good and the bad -- has permanently and undeniably contributed to who we are today. Be the positive force of encouragement and support for your child.

We needed to know that our parents loved us exactly as we are. We needed to know that instead of being obsessed with fixing or managing us, our parents wanted to blaze a trail for us to live and thrive as Autistic people. We needed our parents to understand that it is okay to be Autistic, even though that means we are also disabled. We needed our parents to guide us into your world -- the world of people who aren't Autistic and who don't understand what it is like to live Autistic. We needed our parents to be there not only when times were good and we were coping well, but also when times were bad and we needed more support than usual.

Your child does too.

Your child needs you to know these things, to do these things, to understand these things.

Your child needs to know that Autistic doesn't mean less or worse or defective or broken. Your child needs to know that you value being Autistic. Your child cannot become a healthy and happy adult unless you show with both words and actions that your child is loved exactly as is, and that your child will be supported and guided to as much independence as is possible.

It is not easy to be Autistic in your world. Your world was not made or meant for people like us. This is why we need you. Without that love and support, we might not make it in the world, and if we do, it will be harder than if we had that love and support.

We live in a society where ableism, the idea that people are superior or inferior on the basis of ability or lack thereof, has been thoroughly institutionalized in our attitudes, systems, service provision, and language.

This Tuesday, the sixth of March, the mother of a twenty-two year old Autistic son shot her son and then herself. She said that she was tired, lonely, and unable to care for her son anymore. The article reporting the murder-suicide quoted neighbors and other people who knew the family describing the mother as a wonderful person who loved her son, was under a big strain and depressed, and who had no respite. While I'm not inclined to spend my words vilifying Elizabeth Hodgins, this is not the first time a parent has murdered an Autistic child and was all but absolved for the crime in the media simply because raising a child with special needs can be overwhelming and stressful.

When parents murder children who are not disabled, the public is typically enraged and demands justice. When this happens to children with developmental or intellectual disabilities, it is far more typical to read comments and quotes expressing support for the parent who killed rather than condemnation of the societal conditions and attitudes that drove the parent to such desperation to commit murder of a human being.

When we Autistic adults read this type of article -- and this is only the most recent in a long train of killings of Autistic children -- it terrifies us. When articles reporting on these crimes spend the majority of their words not merely expressing sympathy for the perpetrator but calling for readers to understand that the difficulty of the situation somehow justifies the murder of a disabled person, they also inadvertently send the very powerful message that the lives of people with disabilities are not equal in value or worth to the lives of people without them.

Don't let your children grow up in a world where society devalues their lives.

It is parents, albeit a very small minority of parents, who visit these atrocities against their children, against children who needed their love and support. Thus, it you, parents, who bear the great responsibility to make your voices heard throughout your communities and networks that you love your children as they are, that you want the best for your children even if it means making enormous sacrifices, that you want to be part of the collective community in uplifting and empowering the next generation of Autistic children so that one day no parent will feel compelled or driven to murder and that no Autistic child will grow up thinking of him or herself as defective or broken or a burden.

We need you, because we can't do this alone. Your children need you, because they deserve to grow up in a world where things are better for them than they have been for us. Your children need you to dispel ableism from their world, little by little, so that one day there will be a future where ableism is no longer institutionalized into our society and systems.

Be here.

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This post was originally published on autistichoya.blogspot.com.

Friday, March 9, 2012

California's Autism Advisory Task Force Needs Autistic Representation!

Sarah Pripas
www.autisticadvocacy.org

“Nothing about us without us” is the unofficial motto of the disability rights movement, yet discussions of disability continue to occur without people with disabilities at the table. One of the latest occurrences of this is in California, where the Department of Managed Healthcare recently announced the formation of an Autism Advisory Task Force. Of the eighteen people appointed to the task force, not a single one is autistic.

While it is, unfortunately, commonplace for autistic people to be absent from government-appointed task forces related to autism, that doesn’t make it acceptable. The California chapters of the Autistic-Self Advocacy Network (Los Angeles, Sacramento, and San Jose) are asking that the Department of Managed Healthcare rectify this omission by appointing at least one autistic person to the task force. If you would like to tell the Department that autistic people should be represented on this panel, please sign our petition and pass it on to others. The Department needs to know that an autism task force must necessarily include autistic adults. We are here in California, and we deserve representations on critical matters which will affect our healthcare.

We find it doubly disappointing that while the task force has excluded autistic adults, it has made several dubious choices in membership. One appointee, Rick Rollens, has a long history of anti-vaccination activism. Another, Dr. Bryna Siegel, has made multiple public statements dehumanizing autistic people. Two members of the panel are from Autism Speaks, an organization with a history of excluding autistic adults from its decision-making. Is this task force truly suited for deciding the future of autistic people’s healthcare?

It is, however, not too late for the Department to remedy these unfortunate decisions through autistic representation. Sign the petition and tell the Department, “Nothing about us without us!”

Petition: www.change.org/petitions/autistic-people-need-representation-on-ca-healthcare-task-force

Thursday, March 8, 2012

Spread the Word to End the Word

Sunday Stillwell
Adventures in Extreme Parenthood

This week hundreds of thousands will stand up and ask our family, friends, and coworkers to Spread The Word To End The Word.

This means I am asking you to stop using the words “retard” and “retarded” because when you do, even if you’re joking, even if you don’t mean it as a slur, even if you’re talking about yourself what you are doing is disrespecting people with intellectual disabilities... people like my sons, Sam and Noah.

Would you call my sons retards? Would you say that the ways they stim or perseverate on things is retarded?

Of course you wouldn’t, but I have heard it said to them by kids on the playground who think the way Sam jumps up and down and flaps his hands looks strange, or because Noah likes to make loud screeching noises and run in circles.

So I want to ask you...where did these five- to ten- year-olds learn this word and more importantly who taught them that it means someone who is stupid and slow witted?

They heard it from adults, from teenagers, from their peers who heard it from their dad complaining about the way the football player botched a play or from their teenage sister who called him a “tard” for tripping over a table leg. Heck, they hear it on TV, they read it in books, and they grow up thinking it’s no big deal to call something someone does “retarded.”

But it is a big deal.

It is a very big deal to my family, to my friends raising children with special needs, to those who work and care for those with intellectual disabilities, and to people with disabilities. It is not “just a word” it is a slur and is hateful and disrespectful even if you don’t mean it to be.

Also, this word is not about being politically correct. It’s about being compassionate and respectful to those around you. It’s about thinking before you speak and weighing how your words effect others.

I think this video from the R-word campaign says it best:



If I hear you use the r-word, whether it be online or in person, I WILL ask you to stop and I will explain to you why it is offensive to so many. Raising children with special needs has taught me that you have to stand for something in this world or you will fall for anything. I owe it to Sam and Noah to demand respect for all persons regardless of their abilities and I hope you will join me.

You can help by making a public pledge to stop using the r-word by visiting http://www.r-word.org and by sharing this blog post or those written by others about the subject via your Facebook and Twitter accounts.