Monthly Archives: January 2009

NIH Funding: Too Much for Autism?

seven men in white lab coats conferring together in a non-specific laboratoryThe National Institute of Health (NIH) has published a nifty spreadsheet of estimates of NIH funding for research, condition, and disease categories. (Note: this data is a little “squishy”–be sure to read the introductory text about how research was classified into these categories, including that a single study may classify into multiple categories). Autism research in 2008 came up a whopping $118 million. Why whopping? Here’s some relativity:

Here are the funding figures for some other developmental disabilities:

$60 million for Attention Deficit Disorder
$28 million for Cerebral Palsy
$26 million for Fragile X Syndrome
$17 million for Down Syndrome
$ 9 million for Rett Syndrome

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Care to Resume for Minna Mettinen-Kekalainen

a number of hands applaudingWhile we work on the Action for Children fiasco, take a moment of happy about the results of an action posted earlier this week in this space: the action for Minna Mettinen-Kekalainen.

Minna is a woman in the advanced stages of ALS who also has an Asperger’s diagnosis. She had been denied the nursing care she needs to survive because of complaints about her interpersonal communication.

The great news is that a number of people, including bloggers, activists, and quite possibly you shouted loud about the unethical nature of this neglect, and it’s reported that Minna’s services will be reinstated on Monday 2 February! I’ll be (happily!) closing the action to petition on Minna’s behalf next week. If you do choose to take the action still, please customize the letter to thank the recipients for restoring Minna’s services but also urging them to make sure such a thing never happens again in the future.

This success means we can make a difference. You can make a difference.

Read more details about Minna and the reinstatement of her services in the Not Dead Yet blog.

And continue to make a difference by protesting monstrous advertising–we’ve (unfortunately) still got work to do.

No More Monstrous Messages

black and white line drawing of a monster with a speech bubble with the word ouch in itThe British charity Action for Children has launched an ad campaign that portrays autism as a monster that controls children. This derogatory media is immediately reminiscent of the ransom notes campaign from NYU in 2007, when children with a variety of disabilities were portrayed as having been “kidnapped” by their disability. Swift, united action by twenty two disability rights organizations, the autistic community (including some of you reading this now), and lead by the Autistic Self Advocacy Network, resulted in the offensive campaign being pulled.

While we were victorious with NYU, our work is still on going.

It’s time to unite and take action again against harmful mischaracterization of autism, disability, and children with disabilities in the media. Here are two immediate ways you can make a difference:

1. The Autistic Self Advocacy Network has started an action alert and petition to the Fundraising Standards Board, Hilary Armstrong (British Parliament) and Gary Day (Action for Children) that can be found here. (Special note to non-US users–we’re aware of the issue with international access and should have that corrected soon. Until then you can still send the letter by following these instructions 1) Select “AL” from states list, 2) enter your actual country and county in the “City & State” box, 3) enter only the first 5 characters of your post code for the zip code)

2. Make a complaint directly to the Advertising Standards Committee, here’s a link to the form for that. For tips on what to say to ASA, plus to let everyone know you’ve contacted ASA, use the action alert Tell ASA No More Monstrous Messages.

Elsewhere on the Internet:

The New Republic has a fantastic (I dare say better written than mine) blog post with a considerable amount of additional information. Head over to there to learn more about the situation and how you can help.

Apparently Tony Attwood has made a statement against this unethical campaign.

For Facebook junkies, join the group Let’s stop “Action for Children” demonising autistic children.

If you prefer or enjoy a scathing video satire and commentary (which is captioned but requires literacy) see Dan’s Story Part 2 – After the Goldrush.

School versus “The Real World” in Accommodations

a sign with the words 'real world' followed by an arrow pointing to the rightRecently I did some training for local special education folks. One of my training talks was on academic accommodations and modifications for primary education students on the autistic spectrum. During the question and answer section I was asked, “What can be said to teachers who won’t give accommodations because they insist the child must learn to live without accommodations in the real world?”

This question, and the statement by teachers, about “the real world” is ironic to me as it shows little understanding of exactly what goes on in “the real world” for people with disabilities. The fact is, disability accommodations are a major part of “the real world” for all of us who have aged out of primary education.

Identifying, communicating about, and advocating for accommodations is part of the “real world” skill set that people with disabilities use often in our daily lives. We need to get our needs met in higher education, or in employment, or in the activities of daily living, or in the community, or wherever our futures take us. The need for accommodations doesn’t magically end at high school graduation!

The provisioning of accommodations by employers, administrators, professors, and business owners is part of the “real world,” both ethically and legally. In the US, there are laws that demand that those who live in “the real world” accommodate people with disabilities. Any public education teacher (who also is a part of “the real world”) who refuses to give reasonable accommodation to students with disabilities is in some questionable waters.

After answering the question with a sort of stunned, “but–but disability accommodations are totally part of the real world” (and elaborating as written above), I tried to think of more answers (because my problem solving brain is always seeking maximum amount of solutions). But frankly I could think of no additional responses that could be any more clear than that one.

Putting Autism to Work

a dandelion flower gone to seed, very close upThe home page of Danish IT company SPECIALISTERNE (a Danish word meaning “The Specialists”) has a box with the following bullets in it:

* Did you know that close to one percent of the population meet the characteristics of Autism Spectrum Disorder (ASD)?

* Did you know that most people with ASD do not get the necessary support because of lack of ASD knowledge?

* Did you know that the business community realises a growing need for specialists?

* Did you know that people with ASD are natural born specialists?

The company’s mission continues to say, “SPECIALISTERNE uses the characteristics of autism in a positive way to provide valuable services for the corporate sector on market terms.”

And SPECIALISTERNE seems to not just be “saying” this mission but “doing” it as well: 75% of its 50+ employees are diagnosed with an autism spectrum disorder. And wait, there’s more! SPECIALISTERNE isn’t just “doing” but succeeding and even attracting recent attention by Harvard Business school and MIT.

A business model that takes a strength-based perspective while still providing the necessary supports for success is a fresh and exciting idea amidst the stale failure of social services and the rottenness of relentless deficit-based rhetoric. Along with AspIT, the Danish seem to be coming up with some very interesting innovations for employment (as well as a refreshingly rational attitude).

I would love to see the business model expanded into areas besides IT: there are plenty of ASD “Specialists” in other disciplines eager for competitive work they adore.

International Perspectives on Autism Series

part of a globe of the earth with a political mapAfter an utterly United-States-O-Centric series of posts last week due to the inauguration, this week we’re happy to start an ongoing (shooting for weekly) series of International Perspectives on Autism.

Our International Guest Bloggers will represent at first those non-US countries which have been making the most traffic to this site, so we’ll be starting off with the UK, Australia, and Canada, and continuing on with other countries that have hit this site a lot. We’ve asked our guests to first write about some common topics like diagnosis, education, employment, and advocacy. Then to write about anything related to autism at all from the perspective of their country.

Like the regular team of Kristina and Dora, our international guests will be an equal mix of parents of children on the spectrum and adults on the spectrum.

Structured Activities and Education Foster Understanding and Acceptance

top view of six children painting together on the same table the table is on grassSo much attention is paid to one-sidedly teaching autistic children how to interact with non-autistic children, often with limited results. I’m always on the lookout for anything that takes a more systemic, relationship oriented, approach to social interaction–is there greater success when the focus is not put on “fixing” the autistic child but on encouraging mutual understanding between the autistic child and the non-autistic children? How does that work, and what might result?

Today’s Herald Tribune ran an article Children with autism paired with buddies to create art describing a Sarasota project that mixed kids labeled autistic, kids labeled gifted, and kids without any label together for structured art activities. The kids without an autism label were further given education about autism prior to the event. The final result is an exhibit entitled “Building Friendships: Fostering Acceptance and Understanding of Others Through the Arts.”

Marjorie Williams, a teacher who participated in the project called it, “more successful than we ever imagined,” and went on to say,

“Students were selected based on their attitudes about other students, and the post-test demonstrated a dramatic change in acceptance after the project,” Williams said.

“But it was the actions and behaviors of these students that were most impressive. The children did not want to stop working with their new friends, and they wrote beautiful entries in their journals about their experiences.”

This reminded me of an article last year about Scottsdale Elementary School in Scottsdale, Arizona. The school set up structured games at recess that involved the preferences and interests of the autistic students. Not only did the autistic students start interacting with the other students with great success, but the other students actually had more fun at recess and liked the structured games better than the unstructured time. The teachers even benefited as there were less behavior problems to remediate during and after recess.

I’m not surprised by these reports as a combination between structured activities of mutual interest and greater education about autism to others is what has worked for me personally in improving my relationships with others. The other benefit of such programs is that they teach children skills for gaining tolerance and understanding of difference in general, which goes a long way toward building a better, more humane future for everyone. I hope more projects that address mutual understanding are developed as time goes by–they are of benefit to all.

Time to Change (Discrimination, Stigmatization, Ignorance, and Fear)

a woman smiling extends her hand fowardOK, OK, I admit the news story that piqued my interest is not directly about autism. But it is indirectly about autism in a few ways that I think make it worth writing about in this space. A new ad campaign from Time to Change, an UK organization working to end mental health discrimination, has been launched. The focus is not on “poor crazy people” nor is it on “curing the crazies,” but on the impact of social stigmatization on people who have mental health issues.

Autism is not a “mental health problem;” it is a developmental disability. Fear and hate does not make this distinction however, and society holds many of the same taboos and stigmas against people on the autistic spectrum as it does against people with mental health issues (and indeed against many, many other disabilities as well). Taboos, stigmatization, hostility, and fear can lead to enormous problems such as a person being too frightened to seek help necessary for survival, or to disclose the nature of disability for fear of losing employment, relationships, or control over their decision making processes. It can also lead to mental health problems in itself, some far more dangerous than the autism (or mental health issue, or other disability). Especially when one is repeatedly told to “get over” or “just do” something that is literally impossible.

An exercise I found enormously interesting was to read through the Behind our campaign page and substitute the word “autism” for the phrase “mental health problem.” ([words to substitue in brackets] mine)

* Raising awareness of the stigma and discrimination that millions of people with mental health problems [an autistic spectrum diagnosis] face every day.

* Changing stigmatizing attitudes into acceptance and respect, and beginning to reduce discrimination.

* Creating a new England-wide public space to lead the debate on bringing attitudes on mental health [autism] into the 21st Century.


I’m really, really happy to see a campaign to go after the stigmatization of mental health problems; it is sorely needed. I’d love to see such a campaign for developmental disabilities (including autism) as well. The disability may have a different label, but the effects of stigmatization are unfortunately similar.

Activism Must Be Accessible

u.s. capital building from the front, fenced off with a sign that reads no is an organization for progressive political activism in U.S. politics. It includes both an online component and in-person events. The first line of the about section reads “The MoveOn family of organizations brings real Americans back into the political process.” Recently though it was brought to my attention that some “real Americans” are being left out of the process.

Ethan Ellis, President and Chief Organizer of Next Step reports,

Throughout the Presidential campaign, invited me and other of its members who belong to Next Step to dozens of local Obama campaign events at private homes. After the elections, MoveOn sponsored local training events to teach people how to mobilize others to support the Obama agenda, to which we were also invited.

Some invitations indicated up front that the locations were inaccessible. Others did not, but when I was able to contact the local sponsors, I found none of them were. Carole Tonks checked out 6 in the Jersey Shore area and found only one that was accessible. Zinke McGeady checked out all within a thirty-mile radius of her home in South Jersey, none of which were accessible. Luke Koppisch made similar inquiries in the Camden-Burlington area with similar results.

Attempts by Ellis to contact about the accessibility concerns have been met not with the democratic response one might expect from an organization that supports human rights, but with “thanks for your comment” type form letters!

I’m not meaning here to pick on exclusively (and they have done their share of good work), but this situation points out the larger issue of the enormous amount of effort still to be done to make activism accessible–to enable people with disabilities to participate fully in public policy. This is critical not just from a human rights and legal (ADA) standpoint, but because public policy decisions can affect us deeply: Nothing about us without us!

I am reminded here of a situation that I’m in myself where most of the disability activist groups in my area meet in person, require members to be able to use the telephone, and assume a level of interpersonal communication, which, without considerable assistance, I frankly do not possess. It’s been a huge struggle for me, still unresolved, to figure out how I can assist with the work these organizations are doing, and which I care deeply about, without being afforded the accommodations I need to be an effective advocate.

What is needed here is greater awareness of the access needs of people with disabilities in general and in the arena of activism in particular. Activist organizations need to pay more than lip service to inclusion. It’s time to see some real change, not form letters.

Autism News Potpourri

a bowl of potpourri from aboveSometimes items cross my screen that aren’t major enough to write a full post about, or don’t manage to form in my head into a full post. But they are items of some interest anyway, so here they are as a potpourri of mini-posts:

1. Follow-up on the film Adam (see Consulting on Adam, an Interview with Jason Ross): Adam has won the Alfred P Sloan Prize at Sundance, an award for “an outstanding feature film focusing on science or technology as a theme, or depicting a scientist, engineer or mathematician as a major character.” Whoot!

2. In other movie news, high school students in Louisiana made a film called Piano Lesson about an Aspergers high school student. According to the students, the message of the film could be taken as “don’t judge a book by its cover” and “treat others the way you want to be treated.” Sounds good to me!

3. Entirely unrelated to movies, a school in Denmark has a special program (AspIT) to educate and employ autistic people in IT. According to the article not only has the program been successful, but is expanding both geographically and into more areas of study. Unfortunately I’m a poopy American and don’t read anything but English (boo on me!) so I couldn’t get any further information. But on the surface the idea of it sounds quite keen!