Autism, Autism Speaks, and the True Stakeholders

Autism isn't a four letter word in our house. It's not something we treat with kid gloves, not something we see as a tragedy or, in our kids' case, in need of a cure. We see it as something to be worked with and around, but we don't talk much about it in terms of being a negative thing. We try not to define it in terms of  core deficits, but in terms of how it makes socialization and language more challenging and different.

It is what it is and in all honesty, we don't TALK about autism much here as a family. Everybody has issues and strengths. No biggie.

Imagine my surprise, then, when I was giving Bobby some suggestions for conversation starters for a friend who was coming over and he reacted negatively, saying he didn't want to sound autistic. What the hell? What was so autistic about talking about something he and the person had in common? How did that rise to autism and does that mean I now talk autistic? And if I did, again why is that a big thing? I don't know--and Bobby couldn't articulate it. And I remain saddened that he would regard his disabilities that way. At some point, rejecting your own neurology just makes everything that much harder. I know it happens, know that we as individuals often hate a part of ourselves, and I'd be the first to admit that in cases of disability (and especially acquired disability), it's complicated and messy and there is no right answer.

Where did he learn it? In the end, Bobby was able to say that he didn't want to sound autistic because of something about the adaptive rec center he used to attend and how he sometimes felt there--and I hate to think that he learned to reject a piece of himself at a place he was sent to in order to have socialization opportunities. Others learn to hate a part of themselves from their parents (and I hope that I never, ever teach my children that). And parents learn that negativity from the society they live in. Organizations that are formed to help those individuals and families, therefore, have a responsibility to use rhetoric that does not make the lives of those individuals living with a condition, disorder, or disease worse.

After all, learning to hate who you are--even when that means the challenges-- because of what society says and parents pass on creates more difficulties than it solves. It makes everything harder because instead of families being focused on adaptive coping, in seeing the good, in making dedicated efforts to improve their children's lives, time is lost in a pointless anger and a deeper bitterness.

There are people suffering, people dealing with profound disability, and people, children, with genetic disorders that will shorten their lives drastically. In those cases, even when it's part of their neurology, it's absolutely understandable to view that disorder that takes so much, causes so much pain as something foreign to be fought. Our neurology can misfire on us in so many ways and sometimes those ways cause us serious, life-threatening issues--as Robert Rummel-Hudson notes in calling his daughter's genetic disorder a "monster" to be fought. Sometimes, a different neurology caused by genetic mutations is a bitch--something that takes from the ones we love the freedom to live  healthy lives, or in my husband and son's cases, feels like a ticking time bomb just waiting to go off (in Bob's case, again). Sometimes, there really are monsters to slay or wish most fervently away. It would be foolish and short-sided to not admit that somethings that go neurologically awry have horrible consequences for the people whose neurology it is.

But sometimes, a different neurology, a different way of processing the world, is just a difference, no monsters to be slayed, just skills to be taught, give and take to be learned (on both sides), accommodations to be made--work to be done, but no monsters. Challenges to be faced and overcome or got around (and I'm speaking of the autistic person who does all the work--progress doesn't happen without the individual doing all the work to build skills--we can't as parents do it for them, we can only guide and support).

The problem with the spectrum is that it encompasses both these differences and the severe disability, the crippling add-ons like epilepsy and other medical conditions that make for definite monsters to stand up to and face and fight. People talking about autism get lost in this spectrum because of the huge variations. They see only the autism they know and assume everyone else's is the same as theirs, and that just isn't so. Many parents face what they believe will be bleak futures for their severely impacted children and understandably in light of that seek a cure, and can come to see autism as the monster that steals the child away (I'm thinking of that freaking horrid ad--I Am Autism that AS did a few short years ago). Rhetoric from organizations that serve to foster that atmosphere of choking fear are not helping these families.

At a fundamental, undeniable level we are the dance of neurotransmitters across synaptic divides and electrical signals firing through neurons...we are our neurology, monsters or no monsters, and learning to accept ourselves means learning to live with our challenges, especially when there is no work around.

So much of the rhetoric, though, from organizations isn't about acceptance of this fundamental reality and the need to provide everyone with the appropriate tool kits he or she needs to live the kind of lives we all hope for--satisfying, fulfilling lives with loved ones and friends and work that feeds our spirit. It doesn't mean that there aren't valuable tools to be found at these organizations who cast autism as a scourge that devastates children and families, but that the overall climate is so negative that building adaptive coping skills is hard in the face of that negativity.

So much of the rhetoric is full of this need to fearmonger--to scare--to force parents into handing over money--making them afraid that if they don't do everything now(!), their children will be among the lost, the doomed. So much of it is also about being everything to everybody, and we all know how well that works--it pleases no one fully.

Take the Autism Speaks' mission statement for example:

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.
That's admirable. Who would argue with that--except it doesn't mean a lot, does it? How? Obviously for the better, but how are they defining better? Notice--they are not. Everybody has the advantage of being able to read into this statement whatever he or she wants to.
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism;
Okay, global outreach--because Autism Speaks wants to be the global foundation, not just an American organization--and by including all (causes, prevention, treatments, and cure), they make sure everyone can find something he or she likes--"oh, I don't like the cure part, but I like the treatment, I like the idea of children not having to face the struggles, the issues."
to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Good. Note it led with individuals, too...where the focus should have always been. Yes, parents need support and tools, but autism primarily impacts the person with it. Supporting the individuals actually grappling with autism and the deficits that are imposed because of a disconnect between how our society functions and how autistics perceive and experience the world--that's where it needs to be--the other support is ancillary--and should help everyone cope and function more adaptively. No, it's not easy to be a parent, but it never was supposed to be easy. It's work. The right skill set can make it fruitful, rewarding work.

Here's the thing--note-the rhetoric doesn't say they want to actually HELP any of these people or how they would do it--they want to raise awareness and bring hope. How? Be specific! By providing parent training? Respite care? Job training? Social skills training? Supporting assisted living centers where autistic individuals can live with autonomy, getting the support they need?
Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis.
Define urgent. Define health crisis. How is autism a health crisis? One voice? What does that mean? Who decides which issues are the most important? The stakeholders in this are autistic individuals, after all, and the families that are being supportive of the autistic individuals.
It is our firm belief that, working together, we will find the missing pieces of the puzzle.
What puzzle? I know it goes with the puzzle piece--but let's operationalize this--who's missing what? Is it society who is missing the vital information that would allow compassion, accommodation, acceptance, and the full inclusion of those with autism? Or is Autism Speaks saying that autism is a condition in which those who have it are missing pieces? I think we know where it probably is, but lets hope that perhaps it's both, although my children are not puzzles with missing pieces. They are incredible people who face their challenges every day with courage and dignity.
Autism Speaks. It's time to listen.
I get what they're doing here--it just doesn't mean anything, and that's the problem. We've got a mission statement set up to please the maximum number of supporters at the expense of any real content.

And that's a problem. It's a problem because it represents the major issues with non-profit businesses that need to bring in revenue and have a business model built on growth and entering new markets. When that's your model, you don't want to piss off too many people, so you pick which groups you can afford to. You ignore the eloquent writings of people like  Amy Sequenzia and Kassiane and other autistics who offer constructive and valid criticism of your organization that could and would make your organization more responsive and helpful to the very people you claim to want to help.

Non-profit organizations should be moral institutions whose bedrock is built on service to the population they're fundraising in the name of. Autism Speaks, unlike the NAA and ASA, is primarily a fundraising organization. It's not built from the framework of service to its community, to its stakeholders, although it is making some effort to mediate this through the use of tool kits, family service chats, video glossaries, and the like. This is a very small part of its focus, though.

Having had the pleasure of working with local non-profits, both in terms of service to its constituents and in terms of fundraising, I have found that any and all efforts are sincerely appreciated. People are treated well. On the other hand, working with a national (and increasingly international) fundraising organization like Autism Speaks, I have unfortunately found an often entirely different climate. There have been numerous occasions on the internet where individuals identified as AS workers have made complete, insensitive asses of themselves. As a volunteer, I have had the opportunity to witness a lack care, appreciation and regard for those people who give their time to the organization. I have been handled at times, like last year when AS sponsored the NAA convention where Wakefield spoke. I have also been genuinely and honestly communicated with by individuals in the organization, individuals whom I respect deeply and consider to be allies.

I am not implying that Autism Speaks does all things wrong, but they often do way too many things wrong, especially when it comes to listening to those with autism who communicate clearly and eloquently about the harm the rhetoric of Autism Speaks is causing autistic people. Autism Speaks is not an evil entity, as some would like to view it. It is a mixed bag, and that is in part because it is trying to be a little bit of everything to everyone in the autism community--it doesn't want to alienate people who can bring in money, and so it often forgets the most important part of an autism organization: the autistic individuals themselves.

Service to the constituents an organization supposedly is representing is a moral imperative. Taking money from individuals who believe you will use it wisely to make lives better and not doing so is wrong. Using your volunteers, who are often parents of children on the spectrum or family members, as nothing more than revenue generators is wrong. If Autism Speaks wants to grow into new markets and continue to grow in existing markets, then it needs to change its focus. Raise money, sure--but make sure that at least some of that money raised in local markets is going back into services in the local market that will help autistic individuals and their families NOW will ensure future growth and prevent volunteer burnout.


farmwifetwo said...

He doesn't wish to sound autistic, yet you're upset because he doesn't wish to be disabled anymore??

That's my biggest peeve of most of these parents that think it's wonderful and along with the adults. How dare these people with autism not wish to be disabled... WT??? Not wish to miss out on society and it's unspoken rules and language. But it's society's fault.... how can society be all things to all disabled/ethnic/religious etc groups... it's impossible. Which means if they aren't caught up... they will lose out. Cruel.. no simply honest.

He wishes to learn appropriate social skills. Proper speach skills. Then teach him. He's allowed to be more than "disabled" or "autistic" if he wishes to be.

The #1 thing my eldest is being taught is appropriate social, behaviour and communication skills. The goal is to get a job, to be part of society, and there is no excuse that if everyone else can learn them so can he... it just takes a little more work. There's no brain transplant, no change in the way he thinks or processes things... just proper social skills. Even his severely autistic sibling is learning the same. The elder pissed him off last night and my younger has made up his own swear words and both got into trouble. Neither behaviour was appropriate.

As for those of us on the severe end... my youngest will tell you it sucks. Nothing worse than wanting to join and not being able to because you lack the safety, verbal and social skills to do it. Luckily his cousin that is his age will now play with him in the play yard when he is here. Then he's upset when he doesn't wish to "babysit" him anymore and Russ can't follow the "rules" to continue being with him.

Autism is not "wonderful" and not "a way of being". We don't live "for" it here, we live "with" it. You won't hear the word spoken in our home or used as an excuse or a justification. But, it is a disability... and for those that are on the severe/moderate end and know they are missing out... that will be stuck in care somewhere at the mercy of the system.... it truly SUCKS!!!

K Wombles said...

I didn't convey that well if that's how it reads. It hurts to think that he would hate a part if himself. That he could see attempts to coach him in how to start a conversation would seem autistic and bad.

It's a disability, one that prevents him from having the things he'd like to have, but I don't want the effort to continue to grow and develop skills to ever make him feel bad about who is and what he can do. I want him to take pride in his accomplishments and to strive for more. But I don't want to do it at the expense of how he views himself.

I'm not saying I want him to identify with autism as who is--we intentionally focus on strengths and challenges without labeling everything autistic. I just don't want him to hate something that is no more removable than my anxiety with OCD issues is from me. Hating that part of me would do no good.

K Wombles said...

Damn iPhones and autocorrect

Justin Erickson said...

I have a 11yr old son with CP. One of the best things I have done was to look for ways to deal with anger. http://ways-to-deal-with-anger.sitemoxie.com/ The tips dont only apply to anger. They help you open your mind and see more clear. Helped me to communicate with my son to where hes happier. In the end all that matters is that the kids are as happy as can be. Check these tips out and see if it will work for you.

Zoe said...

I'm sorry, but if you are working with/volunteering for/promoting Autism Speaks, then you're not listening to Autistics. This is, in fact, a black-and-white issue. It's easy to say "it's not that simple, there's good things and bad things about the organization," but the fact remains that they are one of the few disability-related organizations to have such blatant disregard for the people they claim to represent. Until they make a meaningful change (and I mean an Autistic-led executive board and a radical reworking of their priorities, for a start), any claim on their part that they listen to or represent us is only tokenism and weasel-words.

If you want to support autistic people as a community, you can't support Autism Speaks. It really is that simple.

Roger Kulp said...

I'm glad to see you admit there are genetic problems that cause serious neurological disability.Will you admit some of these can present as autism?

This was obviously inspired by the post at LBRB yesterday.Like I said there,every time we talk about Autism Speaks,we need to talk about how certain people in the organization have made themselves,shall we say,financially very comfortable at the expense of parent of autistic children who have given generously of their time and money,because they thought AS was helping their children.

I think the whole puzzle comparison is a very apt one,and one that people with milder,less complicated forms of autism will never get.And being able to type intelligent sentences on a computer,does not reflect your ability to function in the real world.

The way I see it,the puzzle ribbon can be interpreted ant way you want it to be.I think it can represent two things.

1.It can represent all the stuff that can exist in more complicated cases of autism.One piece for seizures,one piece for GI disease,one piece for visual or hearing impairment,one piece for being nonverbal,and so on.

2.It can also represent all of the genetic disorders known to exist with autism.Including those that we have learned about in the last decade and a half or so.One piece for Fragile X,one piece for 22q deletion syndrome,one piece for mitochondrial encephalopathies,one piece for folate disorders,one piece for metylmalonic acidemia,and B12 metabolism disorders,one piece for fatty acid oxidation disorders,one piece for PANDAS and autoimmune disease,one piece for channelopathies,etc.

Biomed is very real for genetic diseases like this,but you have to know exactly what you are treating.You can't treat mitochondrial disese with B12.

For better or worse,these cases make up a very small percent of those with autism.This was a very hard lesson for me to learn.

You know from my posts here in the last few years,these diseases are very hard to properly diagnose.False positives are common.You can have an initial group of tests,that point to say,metabolic disease in my case,but it can take years of tests to find just the right one.You might be found to have all the metabolic signs of methylmalonic acidemia,but once you get tested for the genes,they aren't there.

I really do now have a PRIMARY diagnosis,and proper treatment.And one I just got in December 2011.

It is metabolic,and fairly new.Everything else the anemia,the celiac,and immune stuff,the MMA,the homcystinemia,even the autism itself may not be the primary thing.

And yes,I have heard the argument from neurodiverse types,if you can treat something,in this case,with high dose leucovorin,it isn't "real" autism.But my mother died recently.The hospital she was taken to found out I had an autism diagnosis,one somewhere in between Asperger's and Autistic Disorder,and was going top put me in a group home.

This was the third time in my life I came close to being in a home.I was to have no say in the matter.I suspect this is a common thing with adults on the spectrum as their parents die.

The case worker I was assigned could not believe the difference in what he saw in me,versus what my diagnosis said.That and a very supportive landlord with an autistic son,is why I am not in a home now.

This is not a "cure",and there is still enough of the autism showing in the way you talk and act,but I'm pleased enough with it.Now I can move on to something else.I have just learned about TASH.I am looking into starting a chapter in New Mexico.

Anonymous said...

"How dare these people with autism not wish to be disabled... WT??? Not wish to miss out on society and it's unspoken rules and language."

But you see, if I become non-disabled, if I become non-autistic, then I miss out on all that autism has to offer. Then I lose MY language. Then I lose how I see beauty in nature, how I hear music with my whole heart, I lose everything about how my mind works that makes me love the job I do, and the understanding I have for it, and the appreciation from the people in my life for it.

And it wouldn't be worth it. It couldn't even begin to be worth it.

Autism isn't just a way of being; it's the bedrock of who I am. That doesn't mean that it isn't often hard, or sad, or painful. It is. And there are days when I have wished I didn't have to be this way.

But I do. I know, in my heart, that I do. I work to make things better for myself, to mitigate symptoms, to be less disabled. But there is not a me who isn't autistic, ultimately. And the life I've had born from acceptance of that fact is not a life I'd give up for anything that you could offer me in return.

I'm thinking of Bobby. I think a lot of people probably go through a phase when they just wish they didn't have to deal with the complications of what they are. I think it's something that probably we all have to get around at one point or another. Self-acceptance is just so much more rewarding in the end, though.