6/14/2011

Autism Speaks: From Not on My Radar to an Integral Part of My Life

What does it mean to autism families to have a safe event to take their kids to? A lot. Many of us get along with no special events, no sensory-safe movie showings, no group gatherings. Many of us live in relative isolation, reaching out through the internet to find other families in similar situations.

We had no support group when we first went through Bobby's diagnosis in Germany in the early 90s. We had no support group in the mid 90s in North Carolina, as we went through subsequent diagnoses and the pinning of other labels onto our son. No school program, either. Bobby spent part of his day with the janitor. Yes, that's what the school thought was good for our five year old son. But when we returned to Germany in the late 90s, things were changing. We had a little support group of about a half dozen families, a good autism team to help, and a school that was trying to do right for our kids. What a difference that made.

It was hard to lose all that when we moved again, this time to upstate New York and no program, no services. We homeschooled Bobby full-time for the rest of his school career, even after moving back to Texas. It was working well for us. He began to attend a day center when he was fourteen so that he could socialize and participate in Special Olympics, going full-time in the summer and once or twice a week during the school year (and now he attends three days a week in the school year and one day in the summer; a flip-flop that makes perfect sense for us and his increased activities outside the center).

Through all of this, there was no large autism organization, and even after Autism Speaks began in 2005, it wasn't on my radar. Neither were any of the first organizations that were folded into Autism Speaks. To be honest, we waded through the real world of autism, first with our son, and later with the girls, without any particular knowledge of anything online or organization-wise until I came online in 2008 for a cultural psychology project and started looking at what was available relating to autism. I stayed on long enough and got in deep enough to write my paper, and still, Autism Speaks wasn't on my radar.

In 2009, I began to blog. The girls had both started school, Bobby had started attending the center full-time, and I was recovering from a surgery: I had time. For the first time in 18 years, I had lots of time on my hands. I didn't know what to do with it, and so I started looking again at autism and the online community. I started first on Huffington Post (trial by fire), and from there I found blogs like Age of Autism and their opposites in bloggers like Jeanette, Kathleen, and Autism Nostrum. From there, I found LB/RB, Orac, Autism News Beat and scores more. Over the last two years, I've connected with over 600 bloggers, which Kathleen and I have listed over at Autism Blogs Directory.

Because of how I came online, though, my first experiences dealt with the vaccine wars and neurodiversity versus biomed parents, and so Autism Speaks came onto my radar from the vantage point of neurodiverse bloggers and unfortunate PSAs like "I am Autism." I dipped my toe into the forum at Autism Speaks in 2009, but it didn't seem particularly hospitable, so I didn't look at it again until a month or so ago.

For most of 2009, Autism Speaks didn't speak to me. In February 2010, I attended a conference here and the Autism Speaks Walk kick-off luncheon, and the AS speaker provided the unfortunate 80% of marriages end in divorces statistic (which had me emailing the speaker, who took my references and said they'd make sure they updated their information). We didn't walk that year, in part because my kids weren't where I felt I could safely do so, and because the tax returns concerned me. All that money on fundraising instead of on families bothered me.

But last summer I was asked to be on the walk committee and I said yes. I also started looking at how other non-profits paid their leadership, their staff, how they spent their money, and I realized that just looking at numbers without context was inadequate.

And then we walked. Rick, Bobby, my father and I volunteered at the walk itself. I headed a team for my college, and I organized student volunteers, and we walked. We watched all those faces. We saw 2500 people come to that walk and have an incredible day. And a lightbulb clicked on. This was technically a fundraising event, and it cost money, money that will show up in the 990. It was also a community event. It was a service to families. It was, to steal from those ridiculous credit card commercials, priceless.



This last Friday, Autism Speaks put on another event in Abilene, "Waltzing with Willie." A wonderful impersonator came out and performed. Autism Speak's president Mark Roithmayr and his lovely wife came out to the event, where my dad, my husband, my son, Cisco students, and I were volunteering.

Mark Roithmayr, Bobby, and me


Once again, Autism Speaks provided a safe, friendly environment for families of special needs kids to gather together, enjoy some music, and have a great time. And once again, I was overwhelmed with what a tremendous service that is for people who often don't get a chance to get out and socialize.

Bobby helping set up.

 Dad listening to "Willie."
 A sign of the times; changing to meet the needs.
 Families enjoying themselves.
Linedancing!


Autism Speaks is still in its infancy; it's six years old, but in that time, it has grown and it has evolved. In the 2009 annual report, Mark Roithmayr wrote:

"During the past year we strategically realigned our mission initiatives, reduced operational expenses and improved our overall fiscal health moving into 2010 – no small feat in what were clearly challenging economic times."

Today, Autism Speaks rolled out a brand new web design. In a chat yesterday, it was revealed that their website has over 2,900 pages to it. Last Saturday, I requested a transition tool kit for Bobby, which will come to me free of charge in hard copy in a couple weeks, but which I could also download free. Families brand new to the diagnosis can get a free 100 day kit.

The number two provider of private research funds for autism in the United States is Autism Speaks. In 2009 alone, nearly 30 million dollars was provided for 220 different projects. In addition to funding research, the organization also provides grants to families and communities. As Autism Speaks realizes needs within the autism community, its focus is changing, too. Their mission now reads: "Our Mission At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders."

With an organization as large as Autism Speaks, and as receptive to input from the constituents it hopes to serve, working with them to make the world a better place for my children and all people with autism seems obvious.


 Future volunteers.
 Lily cutting the ribbon at the walk.
A goal we share: 

"our goal is to change the future for all 

who struggle with autism spectrum disorders."

12 comments:

farmwifetwo said...

I came online in 2004 through an author blog. I still "hang" with those women, have travelled to visit a few... but it's not the same as it was at the time. 7yrs is a long time and a lot of changes.

I started blogging in fall 2005 in the aftermath of the ABA fiasco. An online friend at the nagged me into it... and for a variety of reason's stopped 2yrs later. That is where I discovered the online world.

I have been to ONE support group meeting and was so unimpressed I never went back. I did belong to Autism - London but Autism Ontario's views and mine don't mesh so I have no urge to join them again either.

So.... we just hang with the "normal" people. :) And our "autism" stuff comes from the online world which is why I keep my "online" and my RL separate.

Rachel said...

I understand that AutSpeaks brought together people in your community, and that's great, but they really need to do more than change their motto. They still have no autistic people in decision-making or leadership positions, and the amount of money they provide for services to actual autistic people and their families is outrageously low -- especially given the big bucks they pay themselves. And, as far as I can tell, "changing the future" still means "cure" and not much else.

It's not just the future that needs changing. It's the present, in which people are going without services, support, and respect.

Until they start changing the facts on the ground, Autism Speaks will not speak for me.

farmwifetwo said...

"they need to have more autistic people on their board of directors"...

Ummmm... considering I wouldn't give a nickel to ASAN on a good day since they don't represent me or mine... I'd rather take part in an organization that did.

One that actually views autism as a disability.... one that actually funds research on autism... One that doesn't completely ignore the problems going on in New York and Florida for starters with the treatement of autistic children and adults in schools and group homes.

One.... that actually cares about autistic people.

http://nicocoer.tumblr.com/post/6093902571/event-neurodiversity-symposium Not one that doesn't. Autism is not ADHD or dyslexia or any other issue that allows a person to live independantly. Autism is a life long, debilitating, disorder that people have to live at the mercy of the system and hope that unlike that child in New York, those children being restrained in Florida, the one drowned in Quebec, the one found in the basement of her sisters home last year... it doesn't get them killed.

When is those autistics that claim to speak for these people actually going to speak up for them and stop pretending autism isn't a disability.

Atleast AS doesn't sugar coat it.

usethebrainsgodgiveyou said...

You have a lovely family...and wonderful "flower" girls! (Takes one to know one.) Rose

Nightstorm said...

ASAN doesn't sugar coat it either. At least ASAN treats people like me, who struggles to keep a job, and dealing with harassment. ASAN tells me that I am my own Jesus. I can help myself I can protect myself, I can speak on my own no matter how fucking hard it is. I am not always eloquent as I am on the internet. I stutter and scream and headbang, and run away randomly. Bite my arms and slap my face. I am not Ari Ne'eeman, I am not various other autistics out their speaking clearly and with courage. I am a wrathful, injured autist who would not be cowed by AS propaganda that I am a fucking retard that need a NT Jesus.


Glad AS is helping your white middle class family Kim, glad that Bobby benefits this. Call me bitter but AS does shit for me, because I am not tragic enough for their pity and frankly I don't need their pity.

I have a fucking disability I don't paint it as a some super special gift. It's a disability despite it, I will now be shamed by nor will I hide it.

I am an autistic trans-male pagan. I will not be shamed.

Until AutSpk starts giving money back too the communities and starts including autistics as part of the solution. I will give not a single penny to the,

autismandoughtisms said...

Well golly Nightstorm. Where do I start...

"I am a wrathful, injured autist who would not be cowed by AS propaganda that I am a fucking retard that need a NT Jesus."

First off, there is nothing wrong with "being a retard" if by that you mean an intellectually or /and physically delayed, disabled, or impaired individual. Maybe the problem is your own view of "retards"; maybe if you addressed that attitude you wouldn't be so angry about being considered "one of them".

An "NT Jesus"? Un-necessarily emotive language much? Do you mean you don't want any help or funding from NT people? Fine, don't take it then, plenty of others do need and want that help. How about you drop the NT-hatred, us NTs are trying hard to understand and respond to the conerns of ASDs, would you rather we didn't care, we stepped back and gave up? Because by lashing out like that, you're pushing people away from your cause, not bringing them to it.

"Glad AS is helping your white middle class family Kim." What is that even about? What the hell is wrong with being white and middle class? Are white middle class people never autistic? Why so much hatred, who cares what the skin colour or "class" is, the thing that brings us together is trying to help autistic people, who gives a flying f*** what they look like or where they come from. If your concern is that other races and financial backgrounds aren't been helped because of A-Speaks approach, then say so, and say how, and maybe get involved to change it. The aggression is incredibly off-putting, and astoundingly unhelpful.

"I am an autistic trans-male pagan. I will not be shamed." Good for you, really, all of that is 100% fine with me, and best as I can see, no one here - and no one in the original post - is attacking any of those things you identify with. Who is shaming you, or even trying to shame you? Perhaps you could clarify.

Such hatred, such aggression, is not helping you or the people you care about. If you really want to change things for the better, then reason with people, calmly and clearly, and you just might get some change happening. Worth a try anyway.

autismandoughtisms said...

(oh and, just to clarify my comment, when I said "there is nothing wrong with "being a retard"", I meant with the value or worth or identity of the person; I didn't mean there is "nothing wrong" in the sense of not needing help and services, or not facing challenges.)

Nightstorm said...

First off, there is nothing wrong with "being a retard" if by that you mean an intellectually or /and physically delayed, disabled, or impaired individual. Maybe the problem is your own view of "retards";

There is nothing wrong with being disabled yes, but I used retard in a cynical context not in a literal one. It was thrust at the media who portray autistics as needing a savior an advocate to speak to them. I used NT Jesus in context of NTs often having a hero mentality in disability socio-ethics. AutSpks markets to NTs using emotive and textual imagery that often reflects the mind set that NTs must save the poor auties and families from the auties.

You're right there is nothing wrong with being a retard. I've reclaiming the word because I am slowed and still delayed.

Surprise but autists can use wry metaphor.

Do you mean you don't want any help or funding from NT people? Fine, don't take it then, plenty of others do need and want that help. How about you drop the NT-hatred, us NTs are trying hard to understand and respond to the conerns of ASDs, would you rather we didn't care, we stepped back and gave up?

This honestly bugs me. It's proof of privilege and it makes me skin itch. For once, can I have NT parent take a step back and not de-vaulate the anger and oppression I feel from a majority? Really? Can I have that empathy? Why do parents feel that my anger or pain from being oppressed and having unwanted help is unjustified.

I don't want NTs to join my cause not ones that feel that I can't lash out time to time. I spent most of my activism having NTs contribute and advise and for once I want to rage at them and let them see the pain that I hide, but I can't because they don't need my bullshit. I explode and rage and instead of getting. "Damn I hear you I understand your so angry and I feel your hurt, you're right but lets talk calmly ok." I get chastisement.

Who is shaming you, or even trying to shame you? Perhaps you could clarify.

The majority social structure shames me.


"Glad AS is helping your white middle class family Kim." What is that even about? What the hell is wrong with being white and middle class?

Because that is what AutSpks often portray in their ads, because class privilege and race privilege are the ones that benefit and advocate from and for AutSpks. I don't see ads with brown people, people that impoverished people that are gay, trans, people that immigrants and these people NEED those services. The minorities and poorer classes often get screwed over, and AutSpks is not helping.

Such hatred, such aggression, is not helping you or the people you care about. If you really want to change things for the better, then reason with people, calmly and clearly, and you just might get some change happening.

I have been calming reasoning with people for four fucking years. I have been educating and being patient and helpful. There is only so much I can do before something sets me off and I had enough today. Once in a while a volcano is gotta blow.

And to be frank, you gotta be angry sometimes, you gotta have little wrath, it become passion and with that you can get stuff done. I work hard to change things for my people, yes MY PEOPLE and I have been nothing but beacon of sunshine and hope for parents, full of kumbaya and that jazz. But it gets taxing when every damn time I try to educate and show a little clarity I get push back.

I happen to blow today. I am sorry for the outburst and the anger and if you don't feel it's justified that your issue. When you are on the other side of the tracks for a while you do have your "Fuck off NTs" moments. Just as any gay man has "Fuck Straight people" and any black man has "Fuck White people". This is not a comment thing for me, I am actually reasonable, but today I just lost it.

Somedays you just loose it.

autismandoughtisms said...

Excellent reply Nightstorm, and believe me I do understand. We do all have those days, and I'm totally OK with you losing it, because you came back and admitted as much, and explained as much. I read more into your reply than was there; I (incorrectly) thought you were sharing your general attitude and approach to the issues - I didn't realise your usual approach and history of approaches was so different from what I'd read here. My mistake, genuinely happy to have been corrected :)

Nightstorm said...

I am normally a pretty cynical and wry person, my blog pretty much show that. I tend use wit and sarcasm in my posts, but I guess last night was my breaking point.

and to be honest, I was a hurt when you told me to "Quit to NT hate" I think that's what broke the camel's back. Because it felt once again, we can't be angry we can't react to our hurt.

An NT telling and Autist to "Not hate NTs" is like a straight person telling a gay man "Don't hate straight people" it de-validates our feelings of oppression.

autismandoughtisms said...

Oh and, for what it's worth, I'm not a "full-blooded" NT, I'm apparently squarely on the broad autism phenotype, as is my mother, and it looks like my grandmother is too. The NT vs ASD division isn't necessarily a helpful approach to figuring out who has insight and experience, and who doesn't. Not to mention all the undiagnosed ASDs amongst the other parents and family members of ASD children. My son's autism is probably more severe than yours is, that doesn't mean your opinions about ASD don't matter because you're not bad enough; it's the same type of reasoning.

Nightstorm said...

The point of it all is that NT's have privilege, autistics do not and that's where the divide is.