What an Autism Organization Should Be?

Sullivan, over on LBRB, recently blogged about a new program targeting autistic adults at Boston's MGH hospital. This program has been made possible by a generous endowment from the Nancy Lurie Marks Family Foundation. According to the article,

Her (Nancy Lurie Marks) gift to Mass. General will pay for a range of new specialists and programs, including an electronic patient data repository for research, adult neurologists, social workers to help adults find work and housing, and a communication program to evaluate children and adults for devices such as computers that produce speech when a patient types on a keyboard. Bauman, who founded the hospital’s multidisciplinary LADDERS program for children with autism, will become the MGH Distinguished Scholar in Autism, an endowed position, as part of the gift.

I had never heard of this foundation before, so I went to their website. There I found that the organization had been around since 1977, and according to the "About NLMF" section,

The primary mission of the Nancy Lurie Marks (NLM) Family Foundation is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community and educating the public about autism.

When they're not supporting research and services to autistic individuals, the foundation has also sponsored documentaries such as "Autism is a World" and "Voices of Vision: Quality of Life for People with Disabilities: Equity, Opportunity and Inclusion".

Now, this organization probably isn't perfect. Not everyone would be in favor of everything they do. Some of their research money supports genetic investigations, and some of their money has gone to support investigations using ABA type therapy. But in going through their website, what is notable is what is NOT there. No movies moaning how horrible living with someone with autism is. And no hedging regarding vaccines, mercury, or whatever other voodoo people want to ascribe autism to.

In fact, the overall impression I get from reading through the Nancy Lurie Marks Family Foundation website is that we've regressed as a society since 1977. Because evidently back then people set up foundations that respected individuals and wanted to work to help them succeed, as opposed to more recent times when people set up organizations to create "awareness" of how miserable autistics' lives are, and to support all of the non-scientific voodoo out there to "cure" autism.

A Quick Resolution

photo credit-David Spender
creative commons license

After a letter was sent by ASAN (as well as many of you, I'm sure), the York, PA chapter of ASA sent the following reply, in which they detail how they are going to immediately remove the billboards.

We all make mistakes, and it's often difficult to admit when we've made them. I applaud the York, PA chapter of ASA for its quick and reasonable response. I believe them when they say they meant no harm, and salute them for being open to considering other voices from the "family."

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Dear Friends in the Autism Community,

Regretfully it has been brought to the attention of the Autism Society of America – York Chapter – that our recent billboard campaign has caused undesirable confusion within the community. The intention of the billboard campaign was aimed at generating awareness to the general public and was in no way created to cause a malicious stir within the community. As a parent of a severely affected nine year old with Autism I can truly understand your passion regarding advocacy and respect for our children.

We thank you for your thoughts and concerns. I apologize for the misunderstanding and want you to know we will promptly remove the billboard posting.

Respectfully yours,

Amy Wallace

President ASA York

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And here is ASAN's announcement regarding this:

Hello,

Only a few hours after our letter and thanks to the hard work of bloggers like Joe at Club 166, Abfh, Cracked Mirror in Shalott and others who wrote in and called about the billboard campaign, ASA-York has agreed to pull the billboards. This is a sign of the importance of working together as a community to address issues like this. A year and a half ago, it took the combined strength of 21 disability organizations from across the country to have our voices be heard on a billboard campaign not dissimilar to this one. Today, our community's reputation for action and ethics has grown to the point where we can bring about change much more rapidly. This should serve as a reminder of the importance of a strong, united Autistic community with a clear moral vision of a better future for Autistic people. Small victories like this remind us of what we can accomplish by working as one community on issues of every kind and size. Thank you to everyone who took action and in particular to the members of the blogosphere who first rallied the community around this. I encourage people to write to ASA-York's President Amy Wallace at Amy Wallace amywallace3@gmail.com to express your appreciation for their swift action to remove unethical advertising and to encourage them to work with the Autistic community in the future.

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

The Letter I've Written

photo credit-JasonRogersFooDogGiraffeBee's photostream
creative commons license

I know that in one sense, the York, PA ASA billboards that I wrote about in my last post pale in comparison to the ad campaign wrought by the NYU CSC in 2007. But that still doesn't mean that I can't attempt to change what I consider to be an insult to my son, as well as other autistic people.

So here is the text of the letter that I sent today:

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Dear Sirs/Madams:

As the father of a child on the autism spectrum, I am writing to express concern about the York, PA ASA chapter’s billboard campaign that associates autism with being kidnapped. I happened to notice one of your billboards while taking a vacation in Pennsylvania. This campaign is reminiscent of the 2007 Ransom Notes campaign that was undertaken (and subsequently removed) by the NYU Child Study Center in New York City.

Comparing people with autism to those who are kidnapped is not only factually wrong (my son hasn’t been kidnapped, he’s right here in front of me), but is demeaning and offensive to those who are autistic. Rather than “creating awareness”, I can only see the logical end result of such an ad campaign be one of creating fear, misunderstanding, and disrespect towards those who are autistic.

In Medieval folklore the image of a changeling was used to describe children with then misunderstood medical disorders or developmental disabilities. Fairies or trolls were thought to have kidnapped the “normal child” and left the changeling in its place. One would think that in the 21st century we could get past such folklore, and deal with reality.

Putting up ads that show such disrespect towards autistics will certainly not result in greater acceptance and integration in either the school environment or the community. As an organization that ostensibly has been set up to serve the needs of the autistic community, I urge you to immediately remove the ads. Furthermore, I strongly encourage you to consult with autistic self advocates before formulating future ad campaigns.

Thank you for your time, and I hope to hear from you soon.


Sincerely,

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As ABFH was kind enough to point out, the address of the York, PA ASA chapter is:

pa-york@autismsocietyofamerica.org

And the contact person is Amy Wallace.

Could We Have A Little Originality, Please?

So, we're driving through Lancaster County, PA looking for our motel, and Liz says "I thought they got rid of those signs."

I look up to see the above billboard, and instantly realize that although similar in tone to the famed Ransom Notes campaign, was not part of it. After verifying that the kids are both engrossed in watching something on the DVD (I'd really rather NOT have them exposed to such trash), I pulled over to snap a picture.

"No, I explained to Liz, it appears to be a cheap knock-off of that other campaign."



Whether the York, PA ASA is trying to piggy back on what they perceived as a successful campaign, or whether they're just ignorant and the whole "kidnapped/changeling/this isn't my child" thing just resonates with them, I just wish they'd show a little originality, and spend the time to create more original demeaning signs.

My son deserves better than re-hashed crap.

"You'll Always Know Your Cow"

One of our stops on this trip has been to see the Erie Canal, and take a little boat ride on it.

Liz made up this amazing booklet for each of the kids on this trip. She got clip art from various places, pictures of things we were going to visit, and little blurbs that she put together so that the kids could read a bit about what we were going to do before we got there. She made sure that the stuff she wrote was age appropriate, as well as short enough to be interesting. Liz also left some blank pages for the kids to draw or paste souvenirs in. I was pretty impressed.

Liz also read a lot of stories with the kids before we left that dealt with where we were going. As well as rounded out her "priming" of them with a few multi-media presentations (songs and videos).

One of her songs that she was playing for them before we left was "The Erie Canal". Rather than just reciting to them when it was built, how long it was, who was Governor when it was built, etc., she really did a pretty good job of making this stuff interesting. We talked about locks, how they worked, the importance to river traffic to trade in the 1800's, etc.

When we got close to the canal, we were singing the song, and we realized that Buddy Boy had gotten one of the words wrong. We've all done this at one time or another (some of us more often than not), so it was no big thing. But he insisted for the longest time that his version was right, and he didn't want to change it.

The original chorus goes:

Low bridge, everybody down
Low bridge for we're coming to a town
And you'll always know your neighbor,
you'll always know your pal
If you've ever navigated on the Erie Canal.

Well, Buddy Boy insisted the third line was:

And you'll always know your neighbor,
you'll always know your pal cow

Given that he still talks about wanting to be a farmer, I guess it's good to "always know your cow".

The song can be heard here.

When Did Niagra Falls Get So Tacky?

So, our first stop on our family vacation extravaganza this year was Niagara Falls. I have been there 2 or 3 times in the past, but not for at least a decade. And I don't think I've been on the Canada side of the falls for at least 30 years.

I was surprised both by how expensive everything was on the Canadian side of the falls, as well as how tacky. Now don't get me wrong. The falls themselves are beautiful (breathtaking, really), and the view from the Canadian side is better than from the US side. But I'm still left wondering whether if it was worth it to go, as the place left somewhat of a bad taste in our mouths.

This is what we expected (and got!):




The falls are a natural wonder, and the "Maid of the Mist" boat ride is worth it, as they get you right up close to the falls.



But the town is tacky to the nth degree



with Ripley's right next to Frankenstein, next to a horror show, next to a Rock and Roll Wax museum, tacky souvenir shop, etc. People smoking everywhere (not just the tourists, but a much greater percentage of the locals then I would have expected-I thought Canadians were supposed to be much more progressive. I guess they're just more "European" in this respect).

The hotel we stayed at was expensive, and looked like it had been built in the 1970's, with furniture updated once in the 1980's. The cleanliness was barely passable, the wi-fi didn't work in the room (only in the lobby, though they expressed surprise that it didn't work in the room-a night clerk said it never worked in our room). One of the mattresses creaked and was lumpier than our 25 year old sleeper sofa at home.

Food cost about 80% more, even after adjusting for the exchange rate (ham, mushroom, and cheese omelette at a Perkins restaurant- $8.49 in the states, $14.98 in Canada. Other stuff even more outrageous). You would think that the town would look really good, with the prices being charged. But other than some nice buildings right near the river, the rest of the town is rather shabby looking.

It took us almost 3 hours to clear Canadian customs, and we weren't even singled out for special inspection. The lines were just that long. Buddy Boy was waxing poetic in the back seat about what the customs agents might be looking for while we were waiting (bombs, explosives, and terrorists). Luckily, we persuaded him to clam up while we passed thru the line.

Even though the streets were packed, we were told that tourism is off this year due to the economy. The Canadian people were nicer than most tourist dependent townsfolk. I think I would be surly if I lived in a town where people tramped thru my front yard every day and asked stupid questions. One store clerk thanked me for being polite (and I wasn't even trying to be-I can't imagine what she has to put up with on a daily basis).

After a couple days of seeing the falls and the surrounding area, we were off to mid-southern Pennsylvania, where we spent the next few days. Fortunately, we got thru customs going back in about a half hour.

All in all, I still would go back to Niagara Falls and the Canadian side. It's just a shame that such a naturally beautiful place has been degraded by such a tacky town.