Tuesday, December 25, 2007

Merry Christmas!

From my family to yours, Merry Christmas!

We hope you spend the day with people you love, and we wish you the best in the coming year.

Thursday, December 20, 2007

An Exhortation

In case you haven't had enough calls to action recently, what with the Ransom Notes campaign and all, I've got another one for you.

Yesterday I received an email notification from the NIH (National Institute of Mental Health) Autism Listserv. This email was an RFI (Request for Information) for the autism community to make recommendations for future autism research directions. Here's the email:

"The National Institute of Mental Health has issued a “Request for Information
(RFI): Research Priorities for the Interagency Autism Coordinating Committee
Strategic Plan for Autism Spectrum Disorders (ASD).” Please see the
official notice for more information and instructions for responding by the
deadline of January 4, 2008:
The purpose of this time-sensitive RFI is to seek input from ASD
stakeholders such as individuals with ASD and their families, autism advocates,
scientists, health professionals, therapists, educators, state and local
programs for ASD, and the public at large about what they consider to be
high-priority research questions. Please forward this email or share this
request with any individuals or groups who may be interested."

Please note the deadline - January 4. This is a mere 15 days from now, so a sense of urgency seems appropriate at this time.

If you follow the link provided in the email, you will see a bit more information about the RFI. Some key phrases stand out:

"The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research."
Yes, that actually stated that there is a legal mandate driving this process. Though this circumstance is accompanied by its own set of problems, I think it is clear that some conclusions will be reached and a plan will be laid out. If you, like me, have any concerns that the plan may not end up to be what you envision as being supportive of or appropriate to autistic people, now is the time to voice that opinion.

"In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input."
Huh? They had a meeting already? Well don't worry, a very strong and appropriate statement was delivered by Kristina Chew that hopefully helped to frame some of the decisions that will be taking place. Thank you for your timely and well-chosen words, Kristina.

"To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:"
The 4 areas are Treatment, Diagnosis, Risk Factors, and Biology. While it is in all likelihood too late to have input on what the 4 areas are, it is certainly the right moment to influence what direction these 4 areas will go in. If you believe that vaccine studies are not a fruitful way to spend autism research dollars, say so now or risk Risk Factors being all about that. If you are an autistic person who has benefitted from the GFCF diet and believe that research will result in the same benefit being granted to some other autistic people, please let the IACC know that now. If you feel that Asperger's Syndrome and Autism Disorder belong in different diagnostic categories, argue why you feel that way. If you think the JRC is an abomination, perhaps a recommendation to the IACC about researching electroshock therapy is in order.
Notice that the RFI also allows for the category "Other areas of research". Perhaps this is where you want to step in and try to make a difference in how future research directions will be established.

Conveniently, contact info for Diane Buckley, Office of the Director of the National Institute of Mental Health, is also listed for the purpose of supporting inquiries.

I have followed any number of autism debates over the past couple of years, and am acutely aware that virtually all elements of the autism community feel under-represented. Virtually all feel strongly that research should be oriented a certain way. Well, guess what folks? Now - NOW! - is the time to exert your individual and collective influence on the process. I exhort each person, each 'stakeholder' in the autism community, to take some time in the next two weeks to organize your thoughts and present them to the NIH.

Wednesday, December 19, 2007

The Power of Community

I just received an email notification from Ari Ne'eman, President of the Autistic Self Advocacy Network and current spokesperson for the wider disability community, that NYU has announced the end of the 'Ransom Notes' campaign.

Here is a link to Dr. Koplewicz's official statement.

A few brief words about all this:
First, I can't overstate how impressed I have been by Ari Ne'eman's leadership during this process. Though I am not sure at what point Ari assumed his unofficial leadership role, or how he individually ended up in that position, he acquitted himself admirably by all measures. Ari, in his writings encouraging a response from the broader disability community, facilitated a tone of honest and open communication by using such a tone himself. Noticeably absent from his statements was the contentious nature of so many debates and discussions, at least those in the autism community. Ari was consistent in his position as a coalition-builder, was appropriate in his chosen use of diplomacy to achieve the goal of ending the ad campaign, was clear in his explanations of why the campaign was harmful and offensive to those who live with the labels/disabilities it centered on, and has fostered an environment in which Dr. Koplewicz is now willing to sit at the table with the disability community and craft a campaign that can bring about the ends that NYU initially was striving for.

As I said in my earlier post on this topic, I don't think Dr. Koplewicz ever intended to cause harm to anyone. Quite the contrary, I am thankful that there are professionals who dedicate their lives to careers that serve to benefit people with disabilities of all kinds, and he is certainly to be included in that group. I think this is clearly evidenced in his closing statement about the 'Ransom Notes' campaign: "We hope you will partner with us to bring the issues surrounding child and adolescent mental health to the top of America's agenda. Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority." While there are still some things in his statement that I disagree with or are couched in such a way as to indicate that his hand had been forced, I am appreciative of the steps he has taken today.

Here are some closing words from Ari Ne'eman which I think encapsulate the issue well:

"This is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world. It is that message that has carried the day in our successful response to this campaign.
Furthermore, we intend to build on this progress, not only by continuing a dialogue with the NYU Child Study Center and using this momentum to ensure self-advocate representation at other institutions as well, but also by building on the broad and powerful alliance that secured the withdrawal of these ads in the first place.
We are strongest when we stand together, as a community, as a culture and as a people.
Thank you to all of you who have made this victory possible.
Remember: 'Nothing About Us, Without Us!' "

Tuesday, December 18, 2007


It is so easy to become overly serious. That's why a little levity is good medicine every now and then. Enjoy these cartoons - there is a little Calvin in all of us. Yes, and a little Hobbes, too.

Wednesday, December 12, 2007

Horton Hears a Who

I thought it fitting that I open my response to being awarded by ABFH the "Roar for Powerful Words" by evoking an image of one of the finest fables relating to small voices being heard.

In this book, the most famous line (and one that has gained traction with the Pro-life philosophy that I identify with and support) is:
"...a person's a person, no matter how small."

Needless to say, this phrase can and should have lots of play in any discussion of disability rights, as well.

So I am pleased and humbled by ABFH's decision to tag me with this award. I quite simply don't feel deserving, especially considering the other bloggers selected by ABFH (and ABFH herself) and their range and depth of thought on many of the same subjects covered here. If I could smile shyly in an "Aw, shucks" kind of way on my blog, I would be doing so right now.

When I read the post of the originator of this award - Seamus - I saw mention of the sideways glances given to blogging by the mainstream media. In his words, "A Roar For Powerful Words is the chance to scream from the mountains the good news about the powerful posts that are produced every day in the blogosphere, despite what some mainstream columnists and journalists claim." And when you look at the ethics (or lack thereof) and social mores of some bloggers, it is apparent that blogging is the literary equivalent of the Wild West in many ways. But to my mind that makes it all the more notable that some people exercise their right to free speech and communication in ways that reflect the responsiblity we feel to our society, our communities, our families, ourselves. These are the blogs I feel are deserving of the "Roar for Powerful Words" award, and that is why I feel pleased to be included in that group.

With this award comes the request to "... examine exactly what it is that makes writing good and powerful." In keeping with the title and theme of this blog, here are three things that do just that, in my opinion:

*Be yourself. When writing, we all have a voice. Attempting to sublimate the natural voice that comes when the pen touches the paper is a mistake.

*Choose a topic you can be passionate about. I am a person of low emotional range - a stony-faced stoic in many ways. But when my son received an autism diagnosis, I allowed my new-found passion to guide me to places I never thought I'd be. And to write about things I never thought I'd write about.

*Be respectful. It is fine to be a critic, but I feel it is important to do so in a respectful way. If you want to criticize someone or something, have some sound thinking to support your position and don't be afraid to have your positions challenged by people who think differently.

This award will not sit idle here on my blog. It is now my pleasure to offer it to other bloggers.Though we are supposed to pick five, I have only three to mention.
For being a clear, strong, and consistent voice in teaching people what is right and wrong in autism advocacy, Joel Smith at NT's are Weird.
For proving that actions can speak even louder than words, Alex Bain at Run Man Blog.
For proudly and positively discussing views of multiple disabilities, NiksMom at Maternal Instincts.

Tuesday, December 11, 2007


Edit as of 12-12-07
Individuals can now endorse the disability community's joint statement by going to http://www.petitiononline.com/ransom/petition.html


The autism community has gained solidarity - among many of its own organizations and those that involve other disabilities - in response to New York University's "Ransom Notes" campaign.
For those of you who have not yet seen the ads being featured as part of this campaign, please take a moment to view them here...

Read the notes - no really, go read them - allow your natural emotional response to surface. If I set all personal experience with autism aside for a moment and take a fresh look - seeing these "notes", I feel a sense of panic, of a wrong having been committed. That I need to rush to the defense of someone, perhaps come up with some cash to solve the problem. There is an implication of crime, of guilt. A need for swift justice.
I can only speak for my own son when I say ... he doesn't need this kind of publicity.

In an astonishingly misguided effort to raise awareness on Autism, Asperger's, Bulimia, ADHD, Depression, and OCD, the NYU Child Study Center has unwittingly produced precisely the result their campaign was 'designed' to combat. The response to these notes, as desired by the ad agency who developed the theme, is powerful and visceral. But it produces the wrong response. Instead of reducing stigma associated with these dosorders, it reinforces the stigma.

In a remarkable display of unity, the blogging community has stepped forward in an attempt to help provide a unified response to this egregious affront to people affected by the aforementioned group of disorders. Much of the work in doing so has been borne by one Ari Ne'eman, president of the Autism Self Advocacy Network.

Ari prepared and delivered what I consider to be an excellent response to the leaders at NYU. His response acknowledges their good intentions, but clearly and appropriately spells out just exactly why the 'Ransom Notes' campaign has been met with such resistance within the autism community. Since Ari has done such a great job of reflecting my own thoughts on the subject, I need only to shut up at this point and post his letter here.


Dr. Harold S. Koplewicz, M.D.
The NYU Child Study Center
577 First Avenue
New York, NY 10016

Dr. Robert Grossman, M.D.
NYU School of Medicine
IRM 229
560 First Avenue
New York NY 10016

John Osborn
President and CEO of BBDO New York
BBDO New York
1285 Avenue of the Americas
New York, NY 10019

Richard Schaps, Chairman and Chief Executive Officer
Van Wagner Communications, LLC.
800 Third Ave 28th Floor
New York, NY 10022

To the NYU Child Study Center and the supporters of the “Ransom Notes” advertising
We, the undersigned organizations, are writing to you regarding your new ad campaign
for the NYU Child Study Center: “Ransom Notes”. Our organizations represent people
with a wide range of disabilities, including those portrayed in your campaign, as well as
family members, professionals and others whose lives are affected by disabilities. As
people who live and work with disability, we cannot help but be concerned by the way
your campaign depicts individuals with disabilities. By choosing to portray people on the
autism spectrum as well as those living with OCD, ADHD and other disabilities as
kidnapped or possessed children, you have inadvertently reinforced many of the worst
stereotypes that have prevented children and adults with disabilities from gaining
inclusion, equality and full access to the services and supports they require.
While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase
awareness and thus support for the disabilities it describes, the means through which it
attempts this have the opposite effect. When a child with ADHD is described as “a
detriment to himself and those around him,” it hurts the efforts of individuals, parents and
families to ensure inclusion and equal access throughout society for people with
disabilities. When individuals with diagnoses of autism and Asperger’s Syndrome are
told that their capacities for social interaction and independent living are completely
destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading
misleading and inaccurate information about these neurologies. While it is true that there
are many difficulties associated with the disabilities you describe, individuals with those
diagnostic categories do succeed – not necessarily by becoming indistinguishable from
their non-disabled peers – but by finding ways to maximize their unique abilities and
potential on their own terms.
The “Ransom Notes” campaign places a stigma on both parents and children, thus
discouraging them from pursuing a diagnosis that might be helpful in gaining access to
the appropriate services, supports, and educational tools. The autism spectrum should be
recognized for what it is: a lifelong neurological condition – not a kidnapper that steals
children in the dead of the night. The devaluation of the lives of people with disabilities
has led to public policies and funding decisions that have forced thousands of people with
disabilities into nursing homes and other institutions. The unintended consequences of ad
campaigns like yours give legitimacy to the taking away of the civil and human rights of
people with disabilities.
It is true that diagnoses of ADHD, autism, Asperger’s Syndrome, and OCD often
accompany great hardships for families. It is true that depression and bulimia are terrible
disorders that require treatment. Yet, the way you choose to convey those messages is
inappropriate and counterproductive. Individuals with disabilities are not replacements
for normal children that are stolen away by the disability in question. They are whole
people, deserving of the same rights, respect, and dignity afforded their peers. Too often,
the idea that children with disabilities are less than human lies at the heart of horrific
crimes committed against them. The recent tragic instances of violence against children
and adults on the autism spectrum and with other developmental disabilities are linked to
the perception that these people are less than human. We – the adults, families,
professionals and others affected by these conditions - assert that nothing could be further
from the truth.
We are also concerned that the negative stereotypes the “Ransom Notes” campaign
depicts could make it harder for the many people with disabilities and their family
members who are working to ensure that students with disabilities have the right to be
included in their home schools while still receiving all necessary services. Federal law
mandates that students with disabilities have the right to a “free and appropriate public
education” in the “least restrictive environment”. Your advertising campaign claims that
children with disabilities could be a detriment to those around them and as a result hurts
the efforts of parents working to secure the opportunity for their children to be included
with their peers.
While we recognize and applaud the good intentions intended by this effort, we must
urge you to withdraw this campaign immediately, as it threatens to harm the very people
whom it seeks to benefit: people with disabilities, their families, and their supporters. In
the press release announcing this campaign, the Center gave as one of its goals
“eliminating the stigma of being or having a child with a psychiatric disorder”. We are in
full agreement with the goal of eliminating stigma against people with disabilities and
their families. Yet, this campaign serves to increase that stigma rather than lessen it. We
hope that you will heed our concerns and those of many other people with disabilities,
family members, professionals, and countless others and end the “Ransom Notes”
advertising campaign.
Please do not to hesitate to contact any of the organizations listed as signatories to this
letter in order to better solicit the opinions of the disability community prior to your next
advertising campaign. We would be more than glad to help the Center to develop better
strategies to achieve its excellent goals. The NYU Child Study Center has the potential to
do enormous good for children and families affected by disability. By showing that the
Center respects the views of people with disabilities, families, and professionals, you can
make that aspiration a reality.

Ari Ne’eman
The Autistic Self Advocacy Network

Bob Kafka
National Organizer

Diane Autin
Executive Co-Director
Statewide Parent Advocacy Network of New Jersey

Jim Ward
ADA and the National Coalition for Disability Rights

Janette R. Vance
The Family Alliance to Stop Abuse and Neglect

Estee Klar-Wolfond
The Autism Acceptance Project

Barbara Trader, MS
Executive Director

Jim Sinclair
Autism Network International

Stephen Drake
Not Dead Yet

Stanley Soden
Director of Independent Living Services.
MOCEANS Center for Independent Living

Ethan B. Ellis, Executive Director
Executive Director
Alliance for Disabled in Action, Inc.
Next Step, Inc.

Phil Schwarz
Vice President
Asperger Association of New England
Member, Board of Directors
Autism National Committee

Thursday, December 6, 2007

USD January Conference

I am pleased to announce that I and a few other Autism Hub bloggers will be presenting at the University of San Diego Autism Institute Conference in January!

Several bloggers will be presenting in person - including one of my personal favorites, Bev from Asperger Square 8. The title of our presentation is "Enhancing Communication: Blogging and Autism". We plan to discuss a number of issues related to blogging and the Autism Hub, with each presenter speaking of their personal experience and area of focus. Our presentation will also feature two video presentations which will help the attendees gain a greater understanding of how the Hub came to be what it is today and how its contributors and readers feel about it.

If you have been reading this blog for a while, you may recall a series of posts (1, 2, 3)I did in July about the Summer Conference I attended at USD. I was very impressed with the topics covered, the expertise of the presenters, and the emphasis on providing viable supports for autistic people that emphasized the person over the disorder.

The conference will take place from January 7-9 in San Diego. The USD campus is among the most beautiful in the U.S., and the conference itself will take place - appropriately - in the beautiful Joan B. Kroc Institute for Peace and Justice. Aside from our presentation, topics will include:
-Understanding Sensory and Movement Differences (by Martha Leary, read here)
-The role of development of learning and other support accomodations
-Applying Dynamic Systems Theory
-Humanizing and personalizing positive Applied Behavioral Analysis approaches
-Understanding the lived experience of persons with the autism label

I look forward to seeing those of you who are able to attend!

Saturday, December 1, 2007

Making it Worthwhile

When I started this blog in April of this year, I had already spent significant amounts of time familiarizing myself with much of the autism "buzz" on the internet. There is lots out there, from message boards to propietary websites, from PubMed to weblogs, members-only groups to daily newsfeeds.
As with anyone who wants to become involved in the online community, I had to decide what was important to me. What did I feel was an area that would stand to make me a better father for my autistic son? Did I have anything to offer to the online discussions, considering that so much had been so adequately covered already. I'm not particularly confrontational, I don't have advanced science degrees, I dont have enough internet savvy to run a "newsfeed"-type site.
One area that I felt affected me most strongly is the interaction and relationships I was able to develop with autistic adults who communicate via the internet. I've got to say this was a surpsrise to me - a pleasant one at that - because when I first encountered these online self-advocates I was still early enough in the parenting process that I did not realize the extent of positive outcomes for autistic individuals. I took it upon myself to read a lot about what they had to say, how their lives looked right now, what affected them positively and negatively, what similarities and differences they shared. And slowly but surely I began to shift my view of autistic people from being a homogenous group from the pages of a textbook to being a group of people as varied and diverse in their abilities, pursuits, limitations, interests, and relationships as will be found in any group anywhere. All this took place before we had any indication of what skills my son would someday develop. In those early months and throughout the first year+ after diagnosis, Jason was nonverbal. He had frequent and powerful stims. He seemed very detached from us, and he had extreme sensory problems. He still faces many of those challenges, but as he grows we are able to say with certainty that he is not one of the most negatively affected by autism. Jason has no SIBs, is developing strong communication skills, and does not seem to deal with the anxiety issues I hear so commonly about from autistic folks.

So I have spent much time on this blog discussing autistic people - not just my son - in the context of cultural issues, being accepted in our society, government funding, transportation issues, affect on parenting styles, evidence based interventions, cause and cure issues, self-advocacy, and many other topics that I feel are important.

Having said all that, I recently received an email from a reader. I want to share excerpts of this email with you and to express that it is messages like this that make all the work that goes into this blog worthwhile. This was in response to a post I did last month when I indicated my focus on the blog will diminish due to other familial and professional responsibilities and changes in the online autism community:

Hi Steve,
I wanted to thank you again for all the support and encouragement you've
given me. It really means alot to me.
I like reading your blog very much.
The way that you care about you kids shows in your writing. You have a
background in studies that adds alot to what you have to offer.
You have shown an interest in autistic adults on your blog that is
unmatched by anyone I've seen ... We need people like you.
I have fewer responsibilities than you and will look things up for you as
just a friend and supporter if it will help give you more time and more to write
about. There are actually several subjects that you have posted about that are
a lot of interest to me and I would like to learn more about them. It would help
me learn and help me express myself better as well. Please continue to blog when
ever you can and let me know of any way I can be supportive.
I hope you and your family are doing well.

If I have made even a moderately positive impact on even one person, then it makes this whole undertaking much more gratifying.