Now the seats are all empty…

Actually, the seats are not only empty, they have long been stacked by impatient hotel staff–the equivalent of Jackson Browne’s roadies–who wasted no time coming in as one last session went a bit over.  Life goes on as a new conference comes in.

Many of us who attend the Autism Society conference leave quite exhausted.  It is not just a matter of exhaust from lack of sleep, although that is probably a condition probably applies to the nearly superhuman staff that has put in a marathon over the last week to keep the conference running.  Many of us who did get a decent amount of sleep are quite emotionally exhausted.

There are tremendous highs and lows at these conferences.  There are the highs that come from hearing about the good work that has been done and solutions that have worked well for many individuals and their families.  There are also lows as we are faced with struggles that many go through and problems–such as the need to care for an increasing adult population on the services–that are likely to escalate before things improve.  And there are the sad stories, such as the one about the presumably well meaning teacher who told a student who asked “too many” questions that “curiosity killed the cat.”  I wish that teacher would realize that curiosity also brought about the invention of Penicillin, the semi-conductor, and the wheel.  None of these inventors were cats.

With each new conference comes new ideas and inspiration.  We have a lot to work on.  Still, I am going to hibernate for a week before I will have the energy to get started.

Perspectives on Past and Future (Part II)

The second half of our behind-the-scenes insights from a day of filming interviews for the “Future of Autism” video, which will open the conference’s first keynote session tomorrow morning. Read Part I.

“Hope never trickles down. It always springs up.” – Studs Terkel

Dr. Martha Herbert began one of her answers with this quote during our interview. It struck me that “hope” is a word we hear all too sparingly when we talk about autism. But it is something that really is springing up in the voices that have been brought together here in St. Charles. Dr. Herbert went on to say in her answer,

“It is time for the conventional wisdom of autism to change. And I think that change needs to come from surprising places. … I think the people with direct experience of autism have something to contribute that’s absolutely necessary and they need to have their voices heard and respected and all the different forms the voices may take.”

Hope springs up when those voices are gathered and listened to.

We’re going to turbo-charge the networks and we’re going to allow and give the capability to people on the ground, the ability to bring their observations together to share what they know, to create knowledge, to create science.

The theme of hope and positivity around autism was also reflected in the insights of Stephen Shore, who was our final interview in a long day of filming. When he was diagnosed with autism at the age of 2 ½, doctors recommended institutionalization. Instead, his parents implemented “what we would today refer to as an intensive, home-based, early intervention program emphasizing music, movement, sensory integration, narration and imitation. And again this is at a time when the terminology, this terminology did not exist. There was no concept of early intervention.”

This kind of forward thinking is what helped scientists leave the concept of “refrigerator mothers” in the past – and it’s what is helping us as we look to a new way of seeing autism in the future.

Over the years I’ve seen the view of autism change from something that is hopeless, something that needs to be eradicated, destroyed, eliminated. … In the future I would like to see us looking at autism not so much as a scourge on society but more as an expression of the human gene pool. Different people have different characteristics, strengths and challenges and just like everybody else – let’s find a way to use these strengths to lead fulfilling and productive lives.

Don’t miss the video and the panel discussion tomorrow! The session promises many insights.

- Carin Yavorcik

Perspectives on Past and Future (Part I)

Early this year I was asked to work on a history of the Autism Society for our Web site. As one of the younger staff members, it was especially interesting to see where this organization has come from and how much we have accomplished. The Autism Society has been there through the major accomplishments in autism the last half of the 20th Century – helping get people on the spectrum a right to a free and appropriate public education, advocating for autism research at the National Institutes of Health, and establishing the first autism tissue program are just a few examples.

This history was the launch point for the video that will open the conference on Thursday. Starting with an interview with the Autism Society’s first elected president, Ruth Christ Sullivan, we have been collecting perspectives on how the themes of the past will color the future of autism. We also spoke to Sondra Cunningham, founder and current president of our local DC Chapter; Stephen Shore, a board member and person on the spectrum; Valerie Paradiz, Panel of People on the Spectrum of Autism Co-Chair; and Martha Herbert, our director of treatment-guided research. Though we won’t be able to post the videos until after the conference, I wanted to share a bit of a preview today.

I was lucky enough to be able to travel to New York to assist in the interviews of Dr. Paradiz, Dr. Herbert and Dr. Shore. Dr. Paradiz was our first interview that day, and from the beginning her insights were enlightening. Our opening question was on what the youth could do to take up the mantle of advocacy. When we wrote the question, our thinking was, “What can youth with autism do?” but her answer focused around typical youth. It really made me think more about what I had done, and could have done, growing up with a brother on the spectrum.

As much as you work hard to protect the civil rights of other groups, perhaps it’s now time for you to think about individuals with disabilities, individuals with autism and how can you take steps to really preserve and protect and nurture those rights. Can you do it in the hallways at school, or on your campus at your college? Can you become a little more sophisticated in how you view people with autism? And what can you do to begin to meet them partway in your day to day life and truly and genuinely integrating them into the culture?

Of course, she had plenty to say about youth on the spectrum too.

I think that any opportunity for them to become more self aware for knowing others on the spectrum, and to become more self aware in what their rights are – and that it’s okay to advocate for them and stand up for them. In doing so, we actually help others along on the spectrum who either haven’t learned those skills yet, or can learn by our own modeling and benefit from all of us as we work together.

Self-advocacy was something that came up in all the interviews, but another similar recurring theme was the idea of incorporating many worldviews and perspectives as we look to the future. Dr. Paradiz put it this way:

My hope is to … be able to articulate our needs and experiences as people on the spectrum to our neurotypical friends in the professions, in schools, in agencies so that we can all work together to build bridges and create an even more diverse understanding of what autism is. Because together all of our voices count.

Stay tuned for more from our interviewees in Part II …

- Carin Yavorcik

The Persons On the Spectrum of Autism Townhall Meeting

Each year at the Autism Society conference, a “Townhall” meeting of persons on the autism spectrum is held.  This year, the Townhall Meeting will be on Saturday, July 25, 2009 from 12:00 PM-1:30 PM in Turquoise AB.  (In case any of you are wondering, the “town” does not have a zip-code.)

For the past several years, some fifty to one hundred-plus individuals who have identified themselves as being on the spectrum have attended the conference.  Many have chosen to attend the Townhall meeting where we get to know each other.  Although talking at the meeting has been reserved for people on the spectrum, well behaved others have traditionally been invited to observe.

OK, but why would one want to attend such a meeting?  Isn’t actively seeking out other people are rather inautistic thing to do?  Perhaps, this is an opportunity to learn a great deal!

For people on the spectrum, it can be a very empowering experience to meet a number of others who have shared a similar challenges and experiences.  Better yet, it is often possible to learn a great deal by talking with people who have learned by trial and error over time.  There is typically turnout by “spectrumites” of many different age groups.  Some have learned useful adaptations over time, often before being diagnosed.  It is also important to recognize that there are huge variations among people on the spectrum.  Many, in fact, will be polar opposites of others in some respects–some, for example, may be hyper-sensitive to certain stimuli while others will be quite insensitive.  At this type of meeting, there may be a chance to find someone who seems to “match” oneself–or someone of interest–in many different ways.  Such a person can often be a great “model” who can provide a great deal of vicarious insight and knowledge.

Special interests are often a large part of the lives of people on the spectrum.  The townhall may also be an opportunity to find someone else who shares an interest that few others get!

Lars Perner, Ph.D.

So Little Time, So Many Choices!

Those who have attended past ASA conferences know just how packed these events are!  Not only are there a number simultaneous official events going most of the time–there is also a need to squeeze in time for encounters with those ultra-cool people that we may only get to see once a year at the conference!  Yes, it is ironic that autism conferences turn out to be major social events–but that is just one of the paradoxes that it is difficult for people outside the autism community to understand.

The good news is that no matter which events you choose, you are unlikely to go much wrong.  And you can always buy the DVD of most conference sessions to catch up with the wisdom that you missed once you get back from the conference!

Lars Perner, Ph.D.

Maximizing One’s Stripes

We’d like to welcome our guest blogger, Lars Perner, Ph.D.! Lars will be participating in the “Culture of Autism” keynote panel at the Conference (Saturday morning), and is a member of the Autism Society’s Panel of People on the Spectrum of Autism. He’ll be posting his insights and observations as we gear up for this year’s Conference.

Those who have attended past ASA conferences know that attendees get to pin ribbons to the name tags to proudly display their ties to the autism community. Examples of the text on these ribbons include “Parent,” “Individual on the Spectrum,” “Speech Pathologist,” “Grandparent,” and “Chapter Leader.” For those of us who have not served in the military, this is a nice chance to accumulate ribbons!

Officially, the conference is an egalitarian event. Unofficially, however, a person’s status is determined, at least to some extent, but the number of ribbons that he or she can legitimately accumulate.  Some would probably argue that some ribbons may confer more status than others, but there is less agreement on that specific issue.  You will not be dismissed as insignificant if you only accumulate one or two ribbons, but a larger assortment is definitely good for the ego.

If you are not already qualified as a speech pathologist, there is probably nothing you can do between now and the conference to change that. There might still be time, however, to earn some of the other ribbons. For example, even if you do not serve on the board of your local ASA chapter, writing a letter to the editor of the chapter newsletter would arguably qualify you as a “Chapter Leader.”  Volunteering to substitute teach Sunday school one week could qualify you as an “Educator.”

There are, of course, ethical constraints on just how far you can push the envelope in justifying a qualification. If you are not scheduled to speak in an official session, for example, getting up on a soapbox between sessions is not going to qualify you as a “Speaker” no matter how passionately and eloquently you express your views. Making changes in your laptop’s control panel is not going to qualify you as a “Panelist,” either. It is also not considered good form to alter ribbons in a way that would fundamentally change their meaning. For example, a ribbon modified from “Individual on the Spectrum” to “Individual Off the Spectrum” would not really count toward your total.

The ASA has traditionally limited ribbon designations to categories that are somehow “relevant” to the autism spectrum. I, for one, have never been offered ribbons recognizing me as a “Genius” or “Distinguished.” Ribbons recognizing an individual as a “Meteorologist” are not issued, either, no matter how obsessive an interest he or she may have in the field.

Lars Perner, Ph.D.

What is the future of autism?

How will key institutions that serve our citizens with autism and their families view progress and challenges for families and professionals in the future? We’ll be looking at this crucial question at our Conference’s first keynote on July 23. Autism Society President and CEO Lee Grossman will moderate the panel, which includes Dr. Judith Palfrey, incoming President of the American Academy of Pediatrics; Dr. Thomas R. Insel, Director of the National Institute of Mental Health; Dr. Cathy Pratt, Autism Society Board Chair and Director of the Indiana Resource Center for Autism; Dr. Mark Friedlander of Aetna; and Dr. Stephen Shore, Autism Society Board Member and individual on the autism spectrum.

What do you want to know about the future of autism? We’d like to hear from you – please post your questions in the comments below, and if applicable, which panelist they should be directed toward. Though we will only be able to address a few questions in the keynote itself, we’ll be addressing some bonus questions here on the blog.

And the winner is …

Every year, the Autism Society gives out awards to those who have made a difference in the autism community. This year’s winners have created a comprehensive information source for families of newly diagnosed children, worked at treating autism spectrum disorders as a whole-body condition, helped explain the abstract issues of death and dying to those with autism, and more. We’ll be recognizing our awardees at the Conference, but we wanted to give you a chance to get to know them better. Stay tuned for interviews with some of these award winners later.

ASA Volunteer of the Year
An award presented to a chapter member whose work has positively influenced the lives of individuals, parents and professionals coping with autism in his or her community.

Geri Christ Landry | Autism Society of Louisiana
Geri Christ Landry of Lake Charles, La., founded both the Southwest Louisiana Chapter and the Louisiana State Chapter of the Autism Society. Among her many accomplishments as a volunteer in the autism community, she established Direct Care, Inc., an agency that trains and provides personal care attendants to work with people with autism and other disabilities; started a special needs church service celebrated four times a year; helped begin an overnight camp for people with autism and their families; and helps local families navigate the system. Most recently, she was the impetus for the groundbreaking of the first home for adults with autism in Louisiana.

ASA Literary Work of the Year
A literary work published or copyrighted within the last five years that has made a significant contribution to the broader autism community.

Family/Social Division:
Understanding Death and Illness and What They Teach About Life
by Catherine Faherty
(Future Horizons)
Understanding Death and Illness and What They Teach About Life is a comprehensive and practical book that is an invaluable resource for families affected by autism, and for anyone struggling for the complex, emotional issues surrounding the issues of death and illness. Author Catherine Faherty, a therapist with North Carolina’s TEACCH program, discusses the topics of illness and injury, what happens to the person who dies, putting pets to sleep, rituals and traditions, what people say and do, and more. It addresses a difficult topic in a simple and clear fashion, helping explain an issue that is often hard for both those with and without autism to understand.

Education Division:
Learners on the Spectrum: Preparing Highly Qualified Educators
Edited by Pamela Wolfberg (San Francisco) and Kari Dunn Buron (St. Paul, Minn.)
(Autism Asperger Publishing Company)
Learners on the Spectrum is a comprehensive volume that prepares teachers with practical skills needed to educate students on the autism spectrum. In addition, instructors using the book are supported with Power Point presentations, suggestions for tests, papers and other assignments and the opportunity to access current information online. The book presents theories and research about developmental differences in autism authored by leaders in the field. Each chapter guides the reader through key concepts, focusing learning with review questions and answers, and directly describes how to effectively apply the material learned in the chapter to classroom and other teaching settings.

ASA Media Excellence in Video or Print
A video/film/DVD production or news feature or series released in the last five years that has made a significant contribution to the autism community.

Autism and Your Child: A Guidebook for Parents
By the Autism Society of Santa Barbara
Autism and Your Child: A Guidebook for Parents is the information packet that “we wish had been given to us when our own children were first diagnosed,” says the Autism Society of Santa Barbara. It contains everything the parent of a child newly diagnosed with autism needs to know: an explanation of the diagnosis; descriptions of common therapies; step-by-step instructions for the intake and eligibility processes for early intervention, special education and Regional Center services; a glossary of common acronyms in the autism and disability community; and more. The packet is available in both English and Spanish in hard copy and online.

Professional of the Year
Awarded to a professional in the field of autism (educator, speech language therapist, social worker, occupational therapist, psychologist, psychiatrist, medical doctor, researcher or other) who has demonstrated outstanding accomplishment in contributing to the life/lives of individuals with autism and/or to the cause of autism in general.

Timothy M. Buie, M.D.
Dr. Buie is a pediatric gastroenterologist at Massachusetts General Hospital and an instructor in pediatrics at Harvard Medical School. Patients say that he has a unique way of “hearing” what a person with autism is telling him and won’t dismiss self-injurious behaviors as simply a side effect of autism, but really looks at what sort of gastrointestinal problem could be causing the individual pain. As a teacher, he gives students perspective on what it means for a person to be diagnosed with an autism spectrum disorder and helps provide insight into some of the behaviors of individuals with ASD.

Outstanding Individual with Autism
Awarded to an individual who has demonstrated  exceptional dedication, effort or achievement. Areas to be considered can include, but should not be limited to: academics, the arts, athletics, community service, employment, extracurricular activities, transition or independent living skills.

Daniel Huff
Daniel Huff is a 25-year-old with autism from the Chicago area who, by accepting his challenges and building on the strength of his character, has achieved self-sufficiency and expanded the boundaries of his life. Daniel started working at age 16 in a local supermarket. After high school and a two-year transitional school for life skills, he found full-time employment as a lobby agent at O’Hare Airport, where he kept order in long lines of people during security check-ins and was honored as an Employee of the Year. Last spring, Daniel decided he was ready for a broader challenge. He was able to find a new position at the Bank of America mail room in Chicago, and now lives independently with a roommate.

2009 CVS/”All Kids Can” Scholarship Award
Administered by the Autism Society, this scholarship is awarded to an individual with autism who has successfully met all the requirements for admission into an accredited postsecondary program of study.

Jacqueline Faith Blackburn of Minot, N.D.; Spencer Beytien of Dubuque, Iowa; Matthew James Bradley of Milford, Mass.; and Carl N. Anderson of Madison, Wis.

Interested in nominating someone for an award next year? Check out the Autism Society Awards and Scholarships page.

Welcome!

The Autism Society started this blog as an avenue for conference attendees to share their experiences – and for those who aren’t able to attend to live vicariously. Stay tuned for personal stories, audio interviews, photos, perspectives and more in the coming months.