Archive for the ‘autism’ Category

There Will Never Be Another You   20 comments

My father’s older brother was a quiet, brilliant man. My uncle was a slight built man with darting eyes that rarely met another’s gaze. His hands seemed like new tools he hadn’t quite mastered. They would shake as he lit a cigarette. They would fumble as he put together his clarinet, but once he had it assembled, with those long thin fingers in place, he was seamless. That clarinet was an extension of those hands, and it was perfection.

My uncle spent most of his time in a small garage apartment where he could read, make music, or sit amongst the gardenias and watch the squirrels play. It was his refuge, and he let few people inside. In the summer, he would often ride his bike to my grandmother’s house, but after a few minutes of trying to answer a bombardment of her questions over the din of the television he would become cranky and flustered, and we would walk back to his place. There, we could sit for hours listening to Stan Kenton or Chet Baker and blissfully not utter a single word. He was not like other adults. He was like me.

My father was charming. He had a quick wit, and an encyclopedic knowledge about darn near anything. He had a fearsome, exacting moral compass all his own. Integrity was everything to my father. People liked him. He did well out in the wider world, and he hated every minute of it. He hated the noise. He hated the groupthink. He hated the constant inane chatter. As intensely as he loved the human race and all the amazing things it was capable of, he could not tolerate being amongst his fellow humans and all the horrible things they were capable of. Much to my mother’s dismay, he refused to socialize. His tolerance for human interaction was only enough to tolerate his workday. My father would leave the house each morning with a palpable sense of dread, and come home each night exhausted. He would keep up this cycle until he could not, and then he would quit yet another job without warning, usually over an issue he saw as black and white but about which his former employer clearly disagreed. In between jobs, he drank.

My mother was a people person. Everyone liked my mother. She understood what people expected of her, and she never let them down. My mother was a self made woman. She never needed help or accommodation. She had the same game plan for all arenas; work, church, friends. Start at the bottom, do more than your share, keep your head down, and make people happy. This plan worked everywhere. No matter where my mother was, it wasn’t long before she was in charge.

Much to her dismay, none of this carried over to her home life. My mother was at a loss in how to deal with us. She was bewildered as to how people so intelligent were so incapable of success. She was crushed by the unfair hand she was dealt. She had played by the rules, and in return got a husband who could not support her, and a child who could not interact with peers, was constantly ill, and scared away babysitters. She found solace in the Bible, often describing raising me as her own personal trials of Job. By the time I was twelve, my mother had given up on us. She stayed because nice women simply did not leave their families, but she had lost all interest in trying to fix me. Her focus became her career and the relationships she formed in the workplace.

My mother’s detachment created some problems for me. My father had been between jobs for nearly a year. He was drinking liters of vodka a day resulting in auditory hallucinations; voices that told him I was an immediate threat to his safety. I was often forced to leave home for a few days until the situation calmed down. Whatever explanation my father gave my mother for my numerous absences, it must have been completely plausible. Any alternate explanation is simply too painful to entertain. I got by relatively unscathed. I looked many years older than I was, so it was easy to blend into the adult world. My grades never suffered, and I made real friendships, something I’d never accomplished among my peers in school.

In many ways my mother’s change of heart was an immense relief for me. While there were still medical interventions that I did not love, the lifelong string of psychiatrists, psychologists, hypnotherapists and the like came to an end. Ten years of strangers attempting to make me acceptable had accomplished nothing other than building a mountain of credit card debt. If I was going to find a way to make my mother proud, I’d need to figure it out for myself.

My top priority remained gaining my parents’ approval, and toward that goal, academics were my only successful outlet. In school, I was in a gifted program, which meant I spent most of my days with the same twenty-eight students for every class, twenty-six of whom shared a common background; white, wealthy children of “respected” families. They floated in a cloud of starched oxford cloth and Polo cologne. Gail and I sat firmly on the ground below that cloud, outcasts by virtue of her skin color and my neurology. No one was outwardly mean to us, but even at thirteen, the others had mastered the icy tolerance afforded obligatory tokens. Gail and I were more amused than hurt by this. Alphabetical seating kept us together, and this was not a movie where every socially awkward teen wants desperately to be part of the popular crowd.

One late spring day, there was a party invitation from Laurie on my desk when I walked into French class. Laurie was the ‘funny one’ of the very popular girls. She was snarky before snarky was a thing. She had a quick wit that stung. I’d seen girls driven to tears by her so often I lost count. Our only conversations had been her asking me for help with algebra, so I had no idea why I was invited. I assumed I would say I had other plans, and the matter would be dropped. Laurie would have met her obligation to be polite in inviting me, and I could avoid an evening of bad music and perplexing conversation. Brian, the boy every popular girl crushed on, sat down next to me and asked if I was going. I told him no, I had promised my uncle I’d spend the weekend helping him paint his apartment. Brian asked me to please reconsider. I was thoroughly perplexed but promised to think about it, and like an idiot, I kept my promise and really thought about it.

The more I thought about this party, the more I wanted to go. Not that the party itself held any appeal to me, but the concept of the party, the ability to go home and tell my mother I was going to a party with kids my own age was too enticing to pass up. I would be a teenager going to a party with other teenagers. It was my mode of operation to pick a television show or movie as a pattern for unknown social scenarios, and I decided this was Happy Days. What could be more normal than that? It took all I had when telling my mother about the party not to ask her if it made her happy that I was going, because I knew that was not what Joanie Cunningham would do.

My mother must have been pleased, because that Saturday she did not go into the office, but stayed home and ironed my shirt. I had not been able to reach my uncle to cancel our plans. He had a habit of not answering the phone, so he rarely got upset over information he didn’t receive. Mother promised if he called, she would tell him I’d be over the next weekend.

My mother dropped me off at 7:35 with plans to pick me up at nine. I knew the party ended at ten, but I also knew my limits. The party did not seem to be nearly as intolerable as I anticipated. We were outdoors, so the music was kept to a respectable level. I got a Dr. Pepper, and surveyed the landscape. I then placed myself one third distance from the center of the large patio, not so close as to be an actual participant, but not so far back as to appear aloof. My plan was to simply stand in that spot for a little over an hour, and I’d be done, but somehow, the cluster of people drifted outward, and before I knew it, I was drawn into conversing. I held my own, stutter fairly in check, when I heard Laurie say my name, “Bridget.”

“Yes?” I replied.

Slowly, savoring every word she asked, “Tell us, Bridget, is your dad still a drunk?”

While the girls tittered, I stood there frozen trying to collect myself. I had failed in my attempt at social normalcy, this had all been a colossal waste of my time, and I didn’t know how was I going to answer all my mother’s questions when she picked me up. I did not feel sad, or embarrassed, but since I had nothing to lose, I wanted to at least satisfy my curiosity.

“Why?” I wondered aloud. “What do you gain by asking me a question like that? I really want to understand.”

I startled as a hand touched my elbow. It was Brian. His voice was quiet, and angry. “Yeah, why Laurie?” He didn’t wait for a reply, but led me over to a bench. There I sat, eyes wide, watching Laurie’s party fall apart. The crowd drifted apart, divided by gender. The boys almost universally derided Laurie while the girls stood behind her, not saying anything in her defense, but unable to take the risk of going against her. I sat on that bench another half hour waiting for my ride home, while boys shuffled by with mumbled words of encouragement to insure I wasn’t sad.

I said little on the ride home, fending off questions with the very truthful excuse that I had a headache. I was weary from trying to be a part of the world and wanted the day to be over. I went straight to bed, thinking next weekend I would not spend trying to please anyone. I would go to my uncle’s, and paint, and listen to real music.

What I didn’t know was that night my uncle was also weary from trying to be a part of the world as well. They found his body that Wednesday.

Posted March 18, 2013 by itsbridgetsword in autism, autistic families, depression

No Safe Spaces   11 comments

Trigger warning: the following post contains hate speech

I needed a break. The transition to homeschooling my kids led me beyond tired into exhaustion. I needed a few days to recharge. So last week, while my husband had business in Austin, I decided to come along. I had some trepidation about a trip with other people, but I knew they would be in conference sessions all day, and besides these were guys I knew. This was a safe place.

Except, there really is no such thing as a “safe space”, and words hurt.

The words that hurt the most are the ones that go by without comment.

On the drive down, I try to relax. I need to relax. I let go of the parental hyper vigilance and breath deeply, and just as I begin to feel peace I hear one of my back seat passengers use the R word. I gulp. My blood runs cold. I scan the rear view mirror nervously. I wait for my spouse to say something. Anything. Maybe he didn’t hear, or maybe he just didn’t think about it. After all, it’s Just A Word, right? I know the man who said this is a nice guy. He would not purposely be hurtful. But that doesn’t make it hurt less. Using it as an adjective doesn’t make it hurt less either because that adjective applies an undeniable negative connotation to a word that has been assigned to many, myself included.

I hear that word, and I’m a child again…

If a=b, and a=c, then b=c.
If retarded is bad, and I am retarded, then I am bad.
I learned this simple equation early on. That word was always used in hushed tones as if to soften the horror of it all. It elicited swift, angry reactions in adults around me. I remember being pulled by an adult’s tight grip on my arm out of places so fast my legs would tangle in a vain attempt to keep up with whatever grown up was running away from that word. I remember desperately wanting to know what I did wrong so I would never, ever do it again, but being told I didn’t do anything wrong. And yet, they were all clearly upset with me. By the time I was seven or eight, I understood it wasn’t any one action I could change. I was different and wrong to a degree I couldn’t change no matter how hard I tried. This is how broken that word was forty years ago.

By the third time I hear the word in less than a three hour span, any hope of relaxing is gone. Also gone is any illusion that my spouse simply didn’t hear. I remind myself that this sort of talk is still acceptable parlance even amongst social service professionals. I’m the one who doesn’t fit. I am the other. I begin a frantic mental recalibration of the next three days. Gone is any hope of respite. Now I see three days in which I need to cobble together the best facsimile of someone I can never be. Three days which will be infinitely more exhausting than if I’d stayed home buried in laundry and grammar lessons.

By the second night, I couldn’t fake it any more. I was exhausted, stressed and had lost speech entirely. The next day at lunch, I dropped the rest of our party off at a restaurant while my husband and I searched for parking. While driving around in circles, I became increasingly upset, more than a little UT lunchtime parking warranted. I was angry and sick of feeling like a lesser human. When I asked my husband if the place we parked was safe from towing, I snapped some comment along the line of how would I know, I’m just a retard. He admitted while he was vigilant about it previously, he had been lazy about calling his staff out on the r word in his current position. All my anger and hurt spilled out as I explained to him what I thought he already knew. The word retard is just as hateful a word as nigger or faggot, yet we would never use those words in such a cavalier manner. Unless you’ve been on the receiving end of those words (generally preceded by the expletive fucking and followed by an explanation of why you don’t deserve to live) you should count yourself privileged and take the word of someone who has. I was upset with the situation and upset with him, but I was done being upset with myself for being who I am. I deserve better, and that starts with me.

Should I have spoken up? If I could have, sure, but the point of this all is that I am autistic. Verbal output is a Herculean effort for me involving a Rolodex of carefully planned out phrases tailored to fit a given situation. Think of it as auditory predictive text. It often sounds natural because of the amount of time and effort I spend thinking about all possible questions I may need to answer, and formulating set responses ahead of time. However, I am not adept at initiating conversations or interjecting myself into other people’s conversations. Verbally speaking up was outside my skill set. This post is my way of speaking up. While I understand the person I wanted to speak to may never see this, I hope someone else just like him might.

Posted November 1, 2012 by itsbridgetsword in autism

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Self Injurious Behaviors   51 comments

Self Injurious Behaviors. The magic trump card to stop down any conversation about autism. Three words loaded with emotion for anyone who loves an autistic. You want to protect the ones you love. In this case, the one you love and want to protect is also the very same person who is hurting the one you love and want to protect. It’s heartbreaking and confusing. I get that. I promise.

Self injurious behaviors (SIBs) are often cited by those who view autism as a tragedy. Their child’s autism causes him to engage in SIBs, and they would do anything to make the autism that causes their child to hurt himself for no apparent reason to go away. Personally, I have been told I am “so high functioning” I cannot possibly understand, but I do understand because I am an autistic who engages in self injurious behaviors. I’m a head banging, skin biting, hair pulling, mystery bruise getting autistic. I see SIBs from the inside out, and while I can’t vouch for other autistics, for me, the awful part of SIBs is seeing the pain it causes those who care about me. This hurts more than any physical pain. It even hurts more than the root causes that drive me to SIB in the first place.

Self injurious behaviors are not the same as self harm. I feel self harm is a much more concerning issue than SIBs because it encompasses emotional torment (although there is overlap of self harm and SIBs in some cases). If you or someone you care about is involved in self harm, I urge you to seek help

That said, I encountered years of professionals wanting to equate my SIB to self esteem issues, chiefly because of preconceived notions related to my gender. I have my frailties. I am overly sensitive and internalize criticism. I have PTSD related body image issues. My baggage has outgrown its suitcase and demanded a steamer trunk, but it’s my baggage. I own it, I examine it, and I deal with it on a daily basis. My SIBs predate my baggage and will be around should I ever manage to leave that Trunk of Very Bad Things by the side of the road.

On a small scale, my SIBs are not that big a deal. I bite my fingers while trying to process phone calls. Under the table, my nails dig into my leg during a meeting. The actions are discreet, but it took me until my late teens to get my head around the concept that open self regulation via SIBs only left me more vulnerable to those who did not have my best interests at heart. These acts are not a lack of control. I am exerting some small control over my surroundings. Often, I can’t avoid an overstimulating environment. Processing auditory input is difficult for me under the best circumstances. Throw in multiple voices, ambient noise, and fluorescent lights, and it becomes near impossible. Pain works as a filter. Enough pain, and the ambient noise dulls to a roar so that I may at least fake my way through a conversation without tears. These are minor acts that may result in a bruise or a little blood, but no real damage.

Most self injurious behavior stems from what I think of as forced passing attempts. This is a bit of a misnomer because I’m openly autistic, not passing as neurotypical. It’s commonplace for even friendly environments to be sensory land mines, and for people who think they are sensitive to my needs to be miles off target. The world is full of occasions that feel like assaults. Sometimes willful, often inadvertent, and rarely within my verbal ability to act upon in real time, there are demands that I Fit In, Play Along, be a Good Sport, and not be Unreasonable. However, the inconvenient nature of my needs does not make them disappear. Those occasions damage me, chipping away at what is already paper thin defenses until there is nothing left.

Then I break, and the self injury gets ugly.

I take care of others. I try to take care of myself, but in reality, particularly as a parent, there are times when my needs go out the window. I schedule downtime, but life ignores my schedule. I have too many people whose needs must be met at once. I need to maintain composure and stay strong, but with no time to recharge, I become too agitated to properly self regulate. I fall into scripted speech that parrots verbatim criticism and verbal abuse from my past. These aren’t my thoughts, but echolalia voicing my disgust as I hit my head over and over until everything stops. Self injurious behavior during a meltdown always seems to start with the delusion that I’m actually circumventing a meltdown. (I even have the words “Prevent Meltdown” written in my notes.) During, I know this is bad, really, really bad I know for days I will pay in headaches and neck problems, but there is no amount of will power that can stop it from happening.

The best you support you can provide to someone with self injurious behaviors is an open mind. Don’t dismiss possible triggers. If someone communicates to you that an environment or activity is overwhelming, even if that communication is not speech, pay attention to them. Plan ahead. Do not put the ability to handle an event or environment into a success or failure framework, because when you care about someone, you will put yourself in harm’s way to not fail them. Remember that what may seem trivial to you, might be painful to someone else. Adapt to their needs, adjust your perspective, and accept them as they are.

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Posted October 7, 2012 by itsbridgetsword in autism

Sometimes this works…   12 comments

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.

Posted June 8, 2012 by itsbridgetsword in autism

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ItsBridgetsWord to ‘I Wish I Didn’t Have Aspergers: #AutismPositivity2012   6 comments

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.

Posted April 30, 2012 by itsbridgetsword in autism

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Autism Exhaustion Month   6 comments

​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.

Posted April 1, 2012 by itsbridgetsword in autism

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I Know it When I See It   4 comments

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.

Posted November 5, 2011 by itsbridgetsword in autism

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