Time Magazine picks up “I am Autism” protests

7 Nov

Time magazine has an article online today, ‘I Am Autism’: An Advocacy Video Sparks Protest. The article notes the protests staged in response to the I Am Autism video. (I have made my own position clear on the video Autism Speaks media campaign…I am autism, Why I don’t like “I am Autism”, I am autism video removed from Autism Speaks’ website…or is it?, The Autism Speaks bait and switch with I am Autism, and ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices.)

Time starts out with the controversies in the autism communities:

Few medical conditions rival autism as a magnet for controversy. Practically everything about the disorder — its cause, its treatment, the way it is diagnosed, how it is studied — is subject to bitter dispute, sometimes to the point of death threats.

Time has comments from the Autistic Self Advocacy Network’s Ari Ne’eman.

Some autistic “self advocates” are furious over the tone of the video. “We don’t want to be portrayed as burdens or objects of fear and pity,” insists Ari Ne’eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. “Apparently, should my parents divorce, it’s all my fault,” says Ne’eman, who received a diagnosis of Asperger’s syndrome, a relatively mild form of autism, at age 12.

Also, they quote Peter Bell of Autism Speaks:

“I Am Autism,” which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. “It was never intended to have a life beyond that event,” Bell said.

Bell admitted that Autism Speaks does not have any individuals with autism currently serving on its board. “We are looking at adding individuals with autism to various advisory committees,” he said. The group is also initiating a better outreach to adults with autism.

I would welcome (to put it mildly) Autism Speaks getting some autistic representation in their organization. I think “advisory committees” sounds a bit weaker than the sort of representation I’d want to see, but it is a start.

As an aside, can someone explain this part of the article to me?

He notes that other disability groups have moved away from using fear and pity in their media campaigns. (See the best and worst Super Bowl commercials of 2009.)

OK…I’ll grant you that Super Bowl Commercials are not big on Pity and Fear, but it just doesn’t seem to fit the story.

Time has linked to protest videos “I am socks” and “I am Autism Speaks

15 Responses to “Time Magazine picks up “I am Autism” protests”

  1. Ivar TJ November 7, 2009 at 10:39 #

    The links throughout the article appear a lot like ads of some sort.

  2. Robin Hausman Morris November 7, 2009 at 16:01 #

    This is a no win situation. However we may feel about our child’s, sibling’s, or even parent’s diagnosis of autism, it is ours alone. We have the right to own it.
    Katie Wright offered her own comments here:http://www.examiner.com/examiner/x-3565-Autism–Parenting-Examiner~y2009m10d2-Katie-Write-offers-words-of-truth-and-praise-about-autism-video

    While research and awareness are vital, autism remains a very personal issue.

  3. Laane November 7, 2009 at 17:06 #

    Maybe it’s a matter of acceptance and also of how serious one’s child is affected.

    When it would concern my oldest, I would go for the positive approach.

    But my youngest autistic son is a classic autist who is a real burden to his family.
    We don’t get enough support and assistance, because people think we’re complaining about our situation, whereas we just tell a tiny part of what we have to deal with each day.

    It’s a lack of respect to tell us to keep silent because we have to stay positive.
    When there’s no outlook on a better future, people should be allowed to speak out.

    Why don’t we start telling people who are hungry to shut up, so we can all feel good? (retorical question)

  4. Sullivan November 7, 2009 at 18:27 #

    Maybe it’s a matter of acceptance and also of how serious one’s child is affected.

    From what I see, this is not the case. There are parents with “high functioning” kids who support the video, and parents with kids on the other end of the spectrum who don’t support the video.

    It’s a lack of respect to tell us to keep silent because we have to stay positive.

    Which is one reason why I don’t do it. I do not tell people to be silent. ASAN is not telling people to be silent.

    I voice my own views and voice them strongly. If I say “I don’t like the I am autism video” that is no where near saying, “they should keep silent”.

    When there’s no outlook on a better future, people should be allowed to speak out

    People should be allowed to speak out at any time. That’s what I am doing here.

    When groups like Autism Speaks impact the future of my child, damned right I will speak out.

  5. Sullivan November 7, 2009 at 18:36 #

    Katie Wright offered her own comments

    thanks for posting that link. I hadn’t read it.

    I completely disagree with her. I think the way she mischaracterizes those critical of the video is insulting. I wish I were surprised.

    Here is her intro:

    Billy Mann and Alfonso Cuaron were so courageous in sharing their families’ experiences and that of countless other families affected by autism endure. For our kids autism isn’t a lifestyle, it is a severe disability. Apergers is an entirely different disorder

    The whole “not a lifestyle, a disability” is completely insulting and disrespectful of my family’s experience. I do not assert that autism is a lifestyle. Just because I want to protect my child’s rights and dignity doesn’t mean I don’t understand the gravity of the challenges. The question is whether she misunderstands or if she is just taking part in the demeaning tactics so familiar from the groups represented by the Age of Autism blog.

    I am not even sure that is the correct term. Maybe aspies consider it a difference not a disorder. Either way I defer to them and respect their beliefs.

    If this is her version of respect, no wonder there is such a divide.

    Perhaps I’ll let someone with Asperger’s syndrome or the parent of a child with Asperger’s comment further on that point. I will not that Asperger’s is *not* an entirely different disorder. That’s why it is a part of the autism spectrum. Why she wants to demonstrate such ignorance in public is beyond me.

  6. NightStorm November 8, 2009 at 16:10 #

    Perhaps I’ll let someone with Asperger’s syndrome or the parent of a child with Asperger’s comment further on that point. I will not that Asperger’s is not an entirely different disorder. That’s why it is a part of the autism spectrum. Why she wants to demonstrate such ignorance in public is beyond me.

    Aspergers=Autism. Aspergers=FREAKING AUTISM! Got it?

    For our kids autism isn’t a lifestyle, it is a severe disability. Apergers is an entirely different disorder

    My Aspergers is a disorder. It’s part of who I am an I accept it as it is. I don’t run around on forums with my child’s story hawking it around with alms for pity and crying single tears, while championing themselves has heroes while playing Dr.Frankenstein and shoving their beloved child with drugs out the ying-yang, because they so hate the truth.

    I am sure once your child finally get the gift of gab, you spend the next twenty telling him to shut up and that you know whats best for him, like you do to us. Or, deny that we exist.

  7. Bob King November 9, 2009 at 00:11 #

    My emotional gut check about the video is that it felt to me as if it were enabling and permitting despair. It felt to me as if it were an appeal for pity on behalf of the *families* who expected a child and instead had some form of natural disaster inflicted upon them. Worse yet, it’s sort of an “invisible tsunami” of a sort that only someone like them could *possibly understand.*

    While I’m not saying (very deliberately, I am specifically NOT saying this) that it is an intentional effort to define autism in such a way as to define persons who have autism as literal NON-persons, it’s tone and it’s approach and the way that people who support AOS respond to persons who speak from a personal autistic perspective is distinctly evocative of eugenics propaganda. The reasoning is similar. The evocations of threat, harm and crippling expense are similar.

    Is there a tone to my “voice” indicating bias? I’ll admit it, cheerfully. I’m afraid that my experience has led me to believe that for some quantity of those engaged in loud advocacy on “behalf” of autistics, their child’s “inability to communicate” could be much better expressed as an *unwillingness* to accept what communication about perceptions and needs exist.

    As I’ve said on occasion – what part of “flap-flap-flap ARRRGH!” are you unable to understand?

    I have further wondered if “loss of communication” is so much a loss as it is a renunciation. After all, if you ask for an apple and are always given what someone else thinks you “really” want or “should” want – and that result is not even predictable – the LESS information a parent has to process, the fewer unproductive events will occur.

    The most common response from my childhood to genuine attempts to state feelings and needs was “You don’t really feel that way.”

    I didn’t actually stop talking. But I learned VERY early that I had to be careful about what sorts of information I communicated.
    And further, I learned that there were some needs (which for me revolved around sensory issues and dealing with groups of people) that if I said anything at all, would result in me being forced to encounter more of it, harder and longer.

    This of course lead to meltdowns – and of course, this was my fault.

    Only rarely were any of my positive abilities noticed. This still baffles me. It may be that the oddness of how I went about things simply overwhelmed the realization that when they worked, they worked quite well. I learned very early to conceal what I was doing, to lie about it, to hide the patterns of what I did and the very things that fascinated me – because those patterns clearly alarmed my parents to the extent that they would react in alarming, irrational-seeming ways.

    A lot of that is retrospective insight. At the time, the most clearly noticeable thing was that when they saw me in my happy focused state, they would intentionally disrupt it, quite often by deciding that I should be doing something “useful.” Usually this was some unpleasant and arbitrary chore. In one case this amounted to *literally* digging a completely pointless hole – something made even more pointless due to the fact that I have joint abnormalities that make such an exercise more difficult than normal, and the exercise far less profitable than it would be for almost anyone else. And this was well-known.

    My support of Neurodiversity is not at all about suggesting that being autistic is in any sense better. It’s about stating that Autism is often *usefully different,* and that at the very least, leveraging strengths is an approach far more likely to result in lifetime success than forcing a child to develop coping stratagies for dealing with common situations an NT will be able to do better. Some social camouflage is of course required, but it should be seen as that, a development of an ability to interact usefully without the expectation that we be able to function in the same way.

    I think it highly likely that the first humans to figure out how to chip flint *usefully* had autistic traits. Consider how very well perseveration, fascination with the fracture planes and that odd, detached, non-communicative focus serves such a long experimental process. You have to be rewarded by the process itself, because it will be a long time indeed before you figure out how to reliably figure out what rock to bang in which way to get a useful object.

    Consider how unlikely it would seem to be a useful enterprise to anyone who had never seen the point to creating a sharp edge and who, after all, had a complete, functional lifestyle that worked quite well without them.

    But the tribe that did tolerate that strange little creature sitting off to the side banging rocks together – that’s the one that became US. That’s the whole point to Neurodiversity. I am likely to figure out how to achieve a “sharp rock.” I’ll evolve tools and techniques to make *better* sharp rocks. I’ll never be able to USE sharp rocks within a social matrix to achieve a co-ordinated goal of any sort. I’m neither a leader NOR a follower. That’s not a disability, per-se. Being outside of the hierarchical matrix in an emotional and cognitive sense allows me to interact with reality – the realm of sharp rocks – in ways that are important for society as a whole, but NOT useful at all if everyone were doing it. In order for a civilization to exist, the majority of people have to be engaged in the social interactions that define it and bind it together.

    However, that effort precludes certain perceptions. And I think it very likely that if we look about, we can find certain “nurodiverse” traits that tend to qualify a certain proportion of the population to exceptional, necessary roles. I don’t think that makes me “special” in the perjoritive sense that often seems attached to it – but I don’t see difference as being disorder by definition, either.

    I won’t be able to make a profit from sharp rocks, I won’t be able to create or resolve a conflict with them. But if you happen to notice that I am hungry (when I don’t) and present me with interesting problems to solve – I will proactively and productively stay out of your way. It’s all about recognizing and managing my type as a *resource.*

    If the current indications of a stable autistic population of roughly 1% is accurate, that sounds like about the right proportion. It’s probably roughly equivalent to the genuine leader types, and a number of other unusual archetype we celebrate in literature, if not in the DSMIV.

    I certainly won’t be able to build a civilization – even though figuring out how to chip rocks and make them fit together is something that the people who CAN do that probably won’t be able to figure out as quickly or understand so well. After all, the understanding comes at the expense of so much *else.*

    I’m not saying that autistics are perfectly capable of doing what NT’s do in a different way. What an hilarious idea! I get my nose rubbed in the futility of that presumption every day. On the other hand, while the things I can’t do are considered “disablities” (and they are, my goddess, they are) – I note that the things I can do that most NT’s cannot do are also treated as *manifestations of a disease* or a splinter skill – or simply inexplicable and not worth doing anyhow. )

    But there are advantages to putting up with me and my kind, and the most immediately useful and cost-effective way of addressing the “problem” would be increased social recognition of us as part of the general matrix. An odd sort of human, perhaps. But entirely and quite normally human.

    And until Autism Speaks groks that, the “controversy” will continue, because to a very conspicuous extent, Autism Speaks represents an allergic reaction; a xenophobic response to what I assert to be important mental variations that have significant contributions to make to human society.

  8. Dwight F November 9, 2009 at 02:04 #

    As I’ve said on occasion – what part of “flap-flap-flap ARRRGH!” are you unable to understand?

    I laughed at this, I laughed very hard. 🙂

    P.S.
    An insightful leader-type will understand your post and likely effectively act on it. That’s their role, to see the value in all other’s abilities and coordinate the synergy of the skills so everyone is supporting and each other, as needed. Unfortunately, as you point out, that’s a relatively small subgroup, too. Then even within that subgroup not all are going to be able to quickly, insinctively grok far enough out of the typical experience to include those is the ASC subgroup.

  9. Bob King November 9, 2009 at 03:31 #

    Dwight: I have t-shirts! 😛 They might be fun at certain events. (Well, for some variety of fun…) http://ow.ly/AyC2 (zazzle product link). I make t-shirts to illustrate my blog. On occasion, I wonder what would happen if people wore some of them in public.

  10. daedalus2u November 9, 2009 at 04:12 #

    The statement by Katie Wright is interesting. I think the lady doth protest too much. I think she is projecting. I think her type of “autism advocacy” is a lifestyle, the curebie lifestyle.

    Her child may have a disability, she has chosen a lifestyle. There is a difference. A disability is not something that an individual chooses, a lifestyle is.

  11. Shanna November 9, 2009 at 19:53 #

    My son has classic autism. He is nearly 4 and has made only marginal gains in the last two years since our diagnosis despite our pretty aggressive therapy. I guess I am trying to say he is not mildly autistic. I do not support the “I am Autism” video.

    I think it is ridiculous to imply that only people who’s children are high functioning or have Aspergers are opposed to the absolute garbage that is the “I am Autism” video.

    I have been in support groups with parents of both classic autism and Aspergers kids and parents of Aspergers children can have just as many challenges as the parents of children with classic autism. It has been my expierence some of the behavioral challenges can be far more pronounced in children with Aspergers because of executive function. My son has very little behavioral problems. He has an affable, felxible dispositon and is pretty much a joy to be around about 90% of the time. The other 10%, I chalk up to normal toddler behavior.

    I think that some parent’s views on causation have shaped the way they portray autism. It seems more likely to me that this is not a high functioning vs low functioning battle. Typically, (I am generalizing) I find the parents who I have encountered who support the “I am Autism” video are parents who believe that vaccine injury has caused their child’s autism. To them it is ok to villify autism because their child was once this normal baby who was going to make all their hopes and dreams come true and then the MMR shot ripped all of those hopes and dreams away.

    I do not support that point of view. My son is an utter joy. I am not saying he is not without his challenges because we face them everyday. I embrase them because they have made me a happier person. He has shown me that it is the little things that count and that accomplishments are really about perspective. I tell him every day how wonderful he is and how much I love him just as he is. I would never want him to think he is a burden. If we as parents characterize them as burdens, finacial strains, marriage enders ect…what do we expect from society who isn’t required to love them to feel.

  12. Bob King November 9, 2009 at 20:08 #

    @Shanna: WILD applause!!!!

  13. Sullivan November 9, 2009 at 20:29 #

    Shanna,

    Thanks for your response. Well spoken.

    I’ve wanted to do a real response to “I am autism” since it came out. I think it is time to finish that post.

  14. Patrick November 12, 2009 at 19:55 #

    Bravo both Bob and Shanna.

    I tend to shy away from the speculative rock chipping story, though the likelyhood could have existed, but up until that point I agree with his post totally.

    When, if ever, Autism Speaks decides on having representation by ASD members at the highest levels of their organization, then I might believe a bit more about their sincerity.

    I cannot agree that what I have been gifted with is merely a difference. Something (or more than one something) is missing that makes effective (verbal and body language) communications problematic, and social situations very hard to navigate.

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