Questions on Autism, Neurodiversity, and Understanding

Published on October 4, 2009 by Jennifer Laviano

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You know those studies that demonstrate that eye-witnesses are not terribly reliable reporters?  There are several of them, and they usually involve a number of people who are unknowingly “set up” to witness a simulated crime.  Afterward, they are questioned about the details.  I am always somewhat amused by the incredulous reactions of the witnesses when it is revealed to them that their memory of what had just happened is faulty:  “oh, no, I was SO SURE he was wearing a green hat!  Really, it was blue?  Really?”

Well, I felt a little like those subjects recently, when I was completely thrown by the way in which the Autism Speaks’ video “I Am Autism” was received by many members of the autism community.  In particular, I heard from a number of adults with autism spectrum disorders who were incredibly offended by both the content and the tone of the video.  Many of these advocates of what is called “neurodiversity” pointed out the ways in which the poem recited in the short clip so clearly associated autism, and therefore those with it, as being evil and disastrous.  The pressure on Autism Speaks became so great that they ultimately pulled the video and apologized.

This was so different from my initial reaction that I was stunned.  I don’t remember the last time I doubted my initial instincts so much.  But the more people I spoke to, the more I had to think.  My discussions included not just adults with ASD, but parents of children with autism as well.  I tried to talk to a cross-section of parents, whose children were of varying levels of ability, and represented a wide range of experience, from parents new to the diagnosis of autism, to those intimately familiar with the medical and educational processes.

I wish I could tell you that I came through these discussions with a solid conclusion, but I didn’t.  One thing I did realize, however, was that my initial reaction to the video was from the uncommon perspective of a parents’ special education attorney.  My clients are children who have been diagnosed with all types of disabilities, and with all levels of need.  I represent a wide range of students with special education needs.  Some require only minor adjustments to their school program, and others require residential, therapeutic, sometimes even hospital placements.  So, for me, what I took away from the video was the empowerment that the second half of the poem speaks to…families portrayed as “warriors,” united to fight back…well, what more could a parents’ special education attorney ask for?  I mean, other than having “lawyers” listed among the professionals who are engaged in the battle?

And yet, the more I considered the very legitimate points made by the critics of the video, and the more I learned about the neurodiversity movement, the more intrigued I became.

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My understanding of one of the primary criticisms lodged by neurodiversity advocates is that I Am Autism perpetuates a number of myths and “scare tactics” about autism which do not necessarily tell the whole story on autism spectrum disorders.  There are thousands of individuals out there who have ASD who are leading perfectly happy and functional lives, they point out, and continuing to associate autism with a guaranteed dismal future is unfair and misleading.  Additional criticism of Autism Speaks as an organization by proponents of neurodiversity, I’m sure, didn’t help their assessment of the video.  “Curing” or “eradicating” autism can be seen as offensive to those who have been so diagnosed, as those with ASD are as entitled to their unique personalities as anyone else.

I’m a sucker for an underdog.  Really, righting wrongs is up there with my preferred activities, even if it weren’t part of my job.  So you have to understand that, when I began to realize that there is a group of adults with autism spectrum disorders out there feeling quite alienated by not just the Autism Speaks video in particular, but the autism advocacy “establishment” in general, my curiosity was piqued.

Plus, there’s the fact that the format of the Autism Speaks video was to have a pictorial background to the narration of a poem.  Maybe it’s just the former English Major in me, but I’d always thought of poetry as being, by its very nature, hyperbolic.  It tends to exaggerate, symbolize and dramatize.  It is often nuance in the form of grand conclusions.  Ironically, these attributes are the very things least likely to resonate with adults with autism spectrum disorders.  Or, as a mother who I consulted on it put it:  “know your audience!”

And yet…

I can’t help but have so many more questions for the ones raised by neurodiversity advocates.  For example, is the argument that autism should not be cured, and if so, is it being primarily made by those who are functioning fairly well with the diagnosis?  Does this leave out those who are not, and their parents?  Are embracing those with autism and wanting to find a cause and a cure really mutually exclusive?  Do those that promote neurodiversity also expect that autism should be treated as a disability for purposes of employment and higher education accommodations and discrimination?

Do “younger” parents of children and adolescents with autism spectrum disorders really appreciate how different it was to raise a child with autism 50, 40, 30, 20, even just 10 years ago?  Do they know the battles that these families had to wage?  Do they know the realities they had to accept?  Did having to accept certain things because there WAS NO ALTERNATIVE benefit their children with autism, harm them, both or neither?

I know these are all deeply philosophical questions, but I think they’re important to ask, and to try to answer. I pose them here with the genuine intent of sparking a conversation.  Not a heated debate, but a respectful discussion of the different perspectives on this issue.  I fear that, without it, we will allow the chasm between the two “camps” of thought to derail us all from what I hope and believe we have in common:  trying to improve the quality of life for individuals diagnosed with autism spectrum disorders.

As for my current view on this topic, it is unsettled.  When I started to realize the frustration and anger about the I Am Autism video, I immediately thought about many of my clients who have been diagnosed with bipolar disorder.  Some of them are doing very well, and require minimal accommodations and services in school.  Others seem to be psychiatrically hospitalized on a near-constant basis.   In my experience, all disabilities can occur in degrees.

So many times over the many years I’ve been involved in the disability rights’ movement, I have thought about whether I should be careful about what I wish for.  I know that many of the incredible qualities of many people I have known who never got remediation for their disabilities, including my own father, might not have developed outside of their necessity as coping mechanisms.

Where would we be without those personalities, I thought?  Would we have a Van Gogh if we’d had special education and Prozac?

And yet…

If a parent called me today, and told me that their child had just cut off his ear and sent it to a friend, would I hesitate to request a psychiatric evaluation to determine eligibility and placement?  Not for a second.   We must allow for the reality that ALL disabilities exist on a spectrum, not just autism spectrum disorders.  And, just like in all other areas of disability, we need to work together to find a way to get more help to those who need it.  I remain confident that, for the families that participated in the development of the I Am Autism video, this is what they were trying to accomplish.

How about you?

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3 Responses to Questions on Autism, Neurodiversity, and Understanding

  1. Corina Becker
    October 4th, 2009 | 10:11 pm

    You do ask some good questions about Neurodiversity. I do want to point out that while we do gather in groups, there is no larger Neurodiversity organization. Rather, the “movement” is made of like-minded individuals who agree, more or less, on the same positive thinking of autism.

    I’d like to just post my Mission Statement from my blog, as a way to explain:
    “Neurodiversity is about accepting that there is no normal human brain, that being different is okay, and to work together to discover how we all can participate to the best of our abilities in our lives.

    We are optimistic that with the proper supports and accommodations, positive attitudes, acceptance, inclusion and encouragement, that every (autistic) person is able to communicate, interact and contribute to society while meeting individual needs and respecting one’s sense of self and personal rights.

    As a Neurodiversity activist, I will help raise awareness about disability and autism needs and supports, promote inclusion and accommodations into all aspects of society, and work to eliminate negative stigma and stereotypes about autism, ADHD, Learning Disabilities and other forms of a neurologically diverse humanity.”

  2. Trishinspace
    October 4th, 2009 | 10:15 pm

    Hi Jen,

    Boy, this has certainly brought up a lot of questions for ppl involved in the autism community…and that’s good! As an autistic adult with two autistic children, it has certainly been interesting for me to see how people are responding to it all. I personally know of a few people who are what would be considered severly challenged to some, but who speak very clearly using assistive technology, and they say that they do indeed want a voice in decisions about autism and how it portrayed to the general public. Most adults that i know of do not want a cure and don’t even think there is a way to cure since it is not a disease but instead just a difference. I do know of only 1 autistic adult who would like a cure. I think where things get murky for people is that they assume that since we want people to accept and embrace neurodiversity, that it means that we don’t want any of these children or adults to get services that will help them progress and that is simply not the case. No one knows more about the struggles than we do, we live them. It’s important to note that a great many of these struggles wouldn’t exist if people had any kind of an education about the autistic mind and how it processes. The severe behaviors that so many see is not because the child is autistic, but because of frustration and not being understood or because they are treated like infants and talked about as if they aren’t there. There is so much to learn about and it’s very difficult for parents to do that when so much bad information is being shoved into their faces. They are given these very grave messages constantly and manipulated by those who are reaping in huge amounts of money out of desperate families and it all begins with the doctors who give the dx. Most are not exactly positive about it and that scares parents right off the bat. So much money is then given to orgs like Autism Speaks for research and awareness and that is what is so upsetting to me and many of the autistic adults i know. All of these families are banking on finding a cure while so very few of them can actually get the help they need now and their money would be much better spent that way. Smaller orgs that used to help families locally are now gone b/c all of the money is going to Autism Speaks now. It’s sort of like having a church ask for donations every week and then they use that money to buy themselves new cars and build a new and bigger church eventhough they know that the people who attend that church are going homeless and starving. Then they tell eveyone else in town how they are helping out by handing out fliers about the rise in homelessness and hunger. I know that i at least would like for the general public to know how much help these families actually need and that the money they raise for Autism Speaks isn’t helping any of them. Just from my own experience, the people that i’ve informed of that were shocked. They assumed that Autism Speaks was all about helping families. Another sore point is the fact that Autism Speaks doesn’t have any autistic adults on their board of directors. That is why you see the statement “Nothing about us without us” so often. I know that it will take time for the masses to get all of the real information about autism and until that time all of the different therapies and treatments are the best we can do for those kids. So lets at least help these parents get the funding/coverage they need instead of helping the board members of Autism Speaks line their pockets. I’d like for you to look at a few videos that so many of us think are far more beneficial in raising awareness and give hope and a more fair perspective of what it means to be autistic.

    http://www.youtube.com/watch?v=JnylM1hI2jc

    http://www.youtube.com/watch?v=cWOwNP9vC6k

    http://www.youtube.com/watch?v=Y_dPZDcX_ck&feature=player_embedded

  3. Rochelle Dolim
    October 5th, 2009 | 12:26 pm

    “Warriors” would be indicative of a battle … a fight … opposing sides. Why should any person have to ‘fight’ to explain/justify their existence?

    My Mom raised me without the current perceptions of what works. She enabled me to develop for who I was. My IQ is 140. The only ‘special education’ services I needed was one semester for speech therapy. I was involved in an advanced program Los Angeles County had for exceptional students. I’ve been with the same man for coming up on 30 years. I had two dream jobs come my way (left one for the other and that one for motherhood). My children are role models.

    Yet, all anyone tends to see today is the diagnosis … as if there isn’t a real person who goes along with that. It’s really very dehumanizing. Society has made that mistake before. The only ‘harm’ is that done to the people society professes to want to help.