Archive for the ‘autism’ Category
I write quite a few letters to organizations, companies, and individuals in the hope to bring an autistic’s perspective to issues surrounding autism. In general, the responses I get fit into three categories: dismissive, angry, or (most often) silence. What follows is a copy/paste from an email I sent to a company that had product placement at this years AutismOne conference. I did not write expecting them to be able to pull out of the conference on two days notice, but wanted to change their perspective in the future. What unfolded was the most open email exchange I’ve encountered so far. Therefore, I have redacted the companies name so as to not put them in the line of fire on an issue that has so many emotionally charged supporters on both sides. Please read through to my thank you notes at the end. I could not do this without the brilliant work of these writers.
I am Bridget Allen. I am an autistic woman living in north Texas where I spend much of my time being a mother and grandmother. I am a huge fan of your products. A quick inventory of my refrigerator yesterday showed fully one third of the products inside bore a (your) label. As a vegan in Cowtown, y’all are a lifesaver. Last night, I received a direct message on Twitter asking me to outline my concerns with your support of the upcoming Autism One conference. My issues with Generation Rescue and the Autism One conference are threefold.
First, many speakers at the conference espouse an anti vaccine agenda that has been widely debunked by objective scientific research. (see American Academy of Pediatrics http://pediatrics.aappublications.org/content/123/1/e164.full ) This endangers all children, not only those not vaccinated who risk contracting potentially lethal illnesses, but also those compromised by a weakening of herd immunity.
Second, this conference is full of proponents of risky and excessively expensive “treatments” that prey on the fears concocted by images of autistics as ‘stolen children’ who are damaged and broken. (http://blogs.plos.org/thepanicvirus/2012/05/15/more-media-stupidity-chicago-sun-times-runs-propaganda-piece-for-jenny-mccarthys-anti-vaccine-conference/) Speakers include the likes of Mark and David Geier, two men drummed out of the medical community for autism treatments that consisted of chemically castrating young autistic boys. (http://leftbrainrightbrain.co.uk/2011/05/maryland-board-of-phyicians-mark-geier-endangers-autistic-children-and-exploits-their-parents/) Children’s health and futures are put at risk by these treatments while their parents are bankrupted paying for them. In addition, Autism One does not have a history of welcoming discourse or even open coverage of their event. Here is a synopsis of some of their reactions to those who do not completely agree with them (http://lizditz.typepad.com/i_speak_of_dreams/2011/05/autismone-again-expells-peaceful-non-disruptive-registered-attendees.html)
I have a twelve year old autistic son myself. While he has been given speech, occupational, and physical therapy to compensate for some aspects of this developmental disability, we have never emptied out our savings and little of his services took place outside of school hours. He has simply been a boy learning how to be the best version of himself he can be. The result has been an advanced studies honor student who has friends, creates art, and takes preAP courses to further his goal of becoming an entomologist. I firmly believe if I had treated autism like a tragedy, he wouldn’t be thriving today.
Finally, organizations like Generation Rescue and events like Autism One thrive on a false narrative that autism is a tragic illness affecting children; robbing them of the ability to love, connect, and function. In reality, autism is a developmental disability. It does not go away. It cannot be cured. Autism in adults looks different than it does in children because as we grow up we learn just like anyone else. We mature, we develop coping strategies, and we adapt. Is it often difficult? Certainly, but that doesn’t mean we are any less valid as humans. We have real contributions to make to society. Disability rights are human rights.
This narrative is a prime contributor to the denial of basic rights. It dehumanizes the very people it purports to want to help. It may be hard to imagine, but frequently autistics and other developmentally disabled people are killed by parents and other caretakers. When this happens the sympathy is reserved for the person who committed the violence rather than the victim. I recently lead a local vigil of honor and remembrance for those our community has lost. (http://www.prweb.com/releases/2012/3/prweb9329098.htm)
I truly appreciate your time, and thank you for the opportunity to express my concerns.
Sincerely,
Bridget Allen
Many thanks to:
Seth Mnookin – Before he wrote great stuff about autism and vaccines, I already had my fangirl hat on because of Feeding the Monster.
Sullivan from LBRB – who manages to be both rational and engaging. That’s harder than it looks.
Liz Ditz – who says things I want to say, but better and with a lot more guts.
Dr. Paul Offit and Charlotte A. Moser
Danielle A. from ProfMomEsq – who was a link providing machine at a time when I had 10,000 things on my plate. Granted, she had 10,015 things on her plate, but she is a better plate spinner than me.
Ari Ne’eman – who responded to my link request within minutes of asking. Great motivation.
Additional thanks to the Thinking Person’s Guide to Autism. In the course of my email exchange, I was asked for some sources for evidence based information and services for parents new to autism. I was thrilled to be able to have one source that provided everything I was asked about. What you have created is invaluable.
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To I wish I didn’t have Asperger’s,
I am autistic. I spent a lifetime struggling to keep up with a world of people who, without putting in any real effort, can do things that are incredibly difficult for me. I was derided for my perceived inadequacies, while my strengths and accomplishments were ignored or discounted. This went on so long and so frequently, that I internalized these attitudes. I no longer needed anyone to keep me down. I could do a fine job of that all on my own.
I appreciate humanity in all its varied presentations. I love that we are all so very different. I never viewed success as a one size fits all proposition. We all start out with a different set of tools in our toolbox. It only makes sense that the tools at our disposal shape the life we build. I don’t judge people’s worth based on their wealth, talent, appearance, athletic prowess, or any other skill set. I appreciate the accomplishments resulting from that skill set, but I know those accomplishments are not a measure of the intrinsic worth of an individual. Unless, of course, that individual is me.
I held myself to a double standard I could not possibly hope to reach. I apologized when I could not do things as quickly, gracefully, effortlessly, or seamlessly as those around me. I treated accomplishments like raising children of varying, complex needs as minor. I felt shame when I could not make it in the modern American workplace. Even though my children never missed a meal, had suitable clothing, and went to excellent schools, I felt shame that I could not earn a living that afforded them middle class luxuries. I felt shame, I felt shame, and I felt shame.
Only recently, I realized I deserved the same respect and acceptance from others that I give them. It is not unreasonable to hold other people accountable for their attitudes and actions, even when it relates to me. The fact that I struggle with many of life’s day to day tasks, does not negate those tasks at which I excel. I can be proud. I can be loved. I spend every conscious moment of my life in an effort to not hurt others. I seek to lift up those around me. I have nothing to be ashamed of. I suspect neither have you. We are different. Not less, just different. The world fears different, but the world needs different lest we stagnate.
I am done measuring my worth by someone else’s yardstick. I genuinely hope you are as well.
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April is upon us again. If you have any connection to the autism community (or the world of corporate sponsorship) you already know this is Autism Awareness Month. You may also be familiar with Autism Acceptance Month. Prior years, I have tried to throw myself all in, ready to share my own, autistic experience, in hopes that I might bring a little more enlightenment into our interactions. I want to make things better because I’m a fixer. I fix things; even things that are neither my responsibility nor my business to fix. It’s what I do. You can thank me later; or tell me to take a hike. I’m equally familiar with both outcomes.
The problem is, when May rolls around, I invariably feel worse about our future than I did the month before. I feel beat up, hopeless, and a little like a circus animal that has been poked with a stick one too many times for not performing in a crowd pleasing manner. This month’s “awareness” puts us all under the microscope, and it’s hard to move towards acceptance when we’re all on edge.
So this year, I’m making a move towards autism acceptance by means of inaction. I’ve got a list of things I won’t be doing. Many of them I’m not doing already, and will continue to not do well into summer. Feel free to not do things with me, or not not do things.
I am not going to Light it up Blue.
This is not so easy for me. I love blue in that obsessive, “I want one of everything in blue” sort of way befitting the height of spectrum stereotype. However, Autism Speaks is an organization I’m not personally comfortable supporting. That does not mean I think you are an evil, foolish monster for lighting it up blue. It simply means we may not agree about this. Still, I’m not boycotting Home Depot over this. I’m already boycotting Lowe’s for other reasons, and my 60+ year old home is in constant need of renovations. Unless I’m visited by home improvement fairies, someone is getting my business. If you want to make the world a little smurfy in support, please have fun doing so. Maybe in May you can ask me about Autism Speaks. Which brings me to the next of my April inactions:
I am not going to discuss causes of autism, efficacy of treatments, or research direction, motivation, or validity amongst members of the autism community.
I reserve the right to let reporters know when they are flat out wrong, but for the whole of April, and perhaps a bit beyond, I’m putting these topics on hold in personal interactions. I feel all this “awareness” cranks the emotions of those of us invested in this community up to eleven. We are going to be bombarded with even more than usual perhaps well-meaning mainstream media articles that will contain more heat than light. It makes me cranky. I bet it makes you cranky. Have you ever had a productive debate with someone when you’re in a bad frame of mind? Perhaps, but it’s not likely. These issues will still be here in May. I can wait.
I am not going to engage parents of autistic children about autism in general.
To be clear, I am talking to parents. I talk to parents every day. I consider the parents I interact with friends, and I don’t ignore my friends. I’ve been parenting my entire adult life as well as having an educational background in child development and professional experience working with children of varying developmental and emotional needs. Parenting is the one thing I truly know, but I need a break from couching this all through the filter of autism. For my own well being, I’m putting my autistic to neurotypical super secret decoder ring upon the shelf. I promise to put it back on when I’m a little more rested. In the interim, expect more talk about baked goods and sports.
I am not going to pretend to be capable of more than I can sustain.
This is more about me than you. I’m not going to lie to you. I’m not just a little different. I’m a lot different, I’ve spent a lifetime trying to act like I’m not, and it’s not worth it. My internal mechanism is wholly different than most people even if the external results are the same, and it’s hard work. I have a developmental disability along with unrelated health issues. I’m no longer ashamed to use the word disability. I know given the right accommodations, I would be more than capable of a career and financial independence. However, I’ve had a life with no such accommodations. In the past, I held myself to the same standards as those around me with no disability. As a result, trying to function in the workplace has been painful. I started out well, even excelled, but I could not keep that up. These failures carried with them a burden of shame, even in the years after my diagnosis. I am done with that shame. Not just for April, but forever. I plan on shifting focus away from my comfort zone of parenting towards the realms of workplace acceptance and accommodation. I promise, if the world is going to benefit from what our future adults have to offer society, the time to be paving that road is now.
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A couple years ago, my son had a school holiday pageant. The kind of event I would loved to have leaned on my then boyfriend to help me through, but he was out of town on business. So, with younger child in tow, I went to see my eldest son perform. My child is a staunch atheist, and he usually skipped the winter gala in protest of what he felt was an egregious blurring of the separation of church and state, since a local mega church hosts the public school performance. This particular year, he had made peace with performing in a church, so my reprieve was over. I walked in, my autistic son anxious to be on time, as if I would be late. He found his place, and I was left to find a seat in the echo chamber cathedral. Inadvertently, I found myself sitting in the middle of all the parents of my son’s best school friends. The boy astutely saw this, and came over to make introductions. Then, an old friend saw me, waved, and promptly seated her family next to my son and me. Our younger sons are friends, so the small boy chatter began in ernest. I wanted to curl up in a fetal position and put my hands over my ears. It took all I had to not run out. I interrupted my boyfriend’s business dinner with a flurry of frantic texts, and he talked me off my invisible ledge.
That was the night I realized my son was higher functioning than me. I’m ashamed to admit that my response to this epiphany was all too human. I was embarrassed. After all, I’m the parent here, right? You know that awkward moment when someone insensitively says they would never know your kid has autism and they think that’s some kind of compliment? I don’t. No one has ever said that about my son. He is blatantly, unabashedly autistic, and that’s how I’ve raised him. The first time he came home and told me someone called him weird I asked him if anyone said he was mean, questioned his intelligence, or made him feel bad about himself. He said no, just weird. Well then, dear son, let your freak flag fly. The world needs a good deal more weird. We woo hoo’d and hollered and celebrated our weirdness until my other son asked us to hold it down so he could get some sleep. By morning, I was over my moment of vanity in which I needed to somehow feel superior to my own child. I was duly full of self chastisement, and no one knew of my momentary ego trip until now.
So what is “high functioning”? I think of it much like Potter Stewart described pornography:
I shall not today attempt further to define…and perhaps I could never succeed in intelligibly doing so. But I know it when I see it…
—Justice Potter Stewart, concurring opinion in Jacobellis v. Ohio 378 U.S. 184 (1964), regarding possible obscenity in The Lovers.
We know it when we see it, but the concept is a bear trap. I suspect some people will be upset with me for even acknowledging that the concept of high and low functioning has any validity. Others may take issue when I say that while I know it exists, I think it’s chiefly a yardstick of how comfortably one can navigate in a neurotypical setting. My son can easily initiate conversations, never loses speech, and has fewer sensory issues than me. I have all these issues, but for me, they are masked by stereotypes of female behavior. My scripting and inability to initiate or steer a conversation appears to most to be the behavior of a lady who is shy and deferential. When speech eludes me, I may appear cold or snobbish. When words blurt out sharply, I’m assumed to be ‘bitchy’. These perceptions are all deeply rooted in sexism, but I feel no shame in exploiting them to my own purposes. This is how I function.
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It's Bridget's Word 