Archive for the ‘Autism’ Tag

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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How Autism Makes Me a Better Parent   6 comments

I know many people who don’t know autism do not think of autistics as adults with families of their own. When it is mentioned, I bristle at the idea that I, or anyone else, is raising a family in spite of autism, so I thought I’d give a short, incomplete list of reasons why my autism makes me a better parent.

1. I have less expectations than non-autistics.
As a child, I never played with dolls, thought I’d get married, or imagined being a mommy. I didn’t raise children because having kids was what people are supposed to do when they grow up. I did it because I am needed, and parenting is one of the only things to ever come naturally to me. I have never thought ahead to my child’s first day of school, dance recital, football game, or prom. Although all three of my biological children were non verbal or semi verbal in their preschool years, I never felt the need to mourn the child I imagined I would have. I simply made note, got appropriate help when needed, and let them find their own pace.

2. I truly listen.
All the time to each and every word. In all honesty, I don’t have another option. That point where someone is rambling on and on and it all sounds like “blah, blah, blah”? Nope. I hear and process it all. When I can’t hear well enough to process, it makes me so overwhelmed, I have to stop my child and tell them I can’t listen right now, but I’ll come back to them in a few minutes. Anything else, to me, would be dishonest.

3. Gentle, constant honesty
I can’t lie, but that doesn’t mean I run around tactlessly blurting out truths in a hurtful way. My children sometimes don’t like what I have to say. If they have not put in a full effort, I call them on it, and if their actions are hurtful to someone, I let them know. However, my kids never doubt me. Promises are few and far between around here, but they do not get broken. When my children receive praise, it is genuine and not effusive.

4. Lack of embarrassment
The handful of times I’ve been embarrassed in my life, it has always been due to an intellectual slip up on my part. I have sympathy for the parent who is mortified when their child has a public meltdown, but on a personal level, I can’t wrap my head around it. Do I get dirty looks in the grocery store? Sure. I’ve had appalled neurotypical friends point it out to me, but I don’t notice and don’t care. I’m on my third child who has less than ideal public displays. I have been escorted out of retail establishments, yelled at by strangers, and had the police called on me several times all due to my children’s issues. Inconvenient, exhausting, and occasionally heartbreaking? Yes. Embarrassing? No. Therefore, how I handle these issues is not influenced by outside pressure. I handle each one based on that child’s needs, motivations and skill set.

5. Super hearing
Did that child really think they could get by with that without me knowing? Think again, dear one.

6. I don’t rely on my “executive functioning” or lack thereof.
I write things down. On bad days, the to do list includes items like “brush hair”. My calendar contains appointments set for things like renewing prescriptions and which day of the week my older son stays after school (even though it’s the same day every week). I actually remember everything, but everything is too much to keep prioritized. I don’t assume any task is too easy to screw up. When I do screw up, I work hard to forgive my imperfections. (I have a long way to go on that.)

7. Time management
Here is my autistic secret weapon. I have a near savant like sense of time. If you ask me to demonstrate or prove it, you will be met with a blank stare in which you should infer many four letter words are silently being thrown your way. I’m not a show pony or an autism novelty act. I don’t need clocks or watches to know what time it is or how much time has passed. I can accurately estimate the time any given task will take, and I am rarely wrong. In my head is a constant awareness of each second. I have to concentrate to not focus on it. I have no ‘I lost track of time’ moments, but they sound quite tranquil, and I’m envious of yours. Since this internal clock is my tool, I’m going to use it. If I’m late, there’s a good chance I had a meltdown. Yes, I still do that. No apologies, it comes with the territory, and I’m not supermom.

Posted November 1, 2011 by itsbridgetsword in Uncategorized

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Awareness is Not Enough   7 comments

This piece is part of a wonderful project by Stuart Duncan of Autism from a Father’s Point of View. Other “awareness” movements rang hollow with me. Frankly, if someone can’t understand or accept me, I’d prefer they stay unaware. What follows is an open letter by Stuart with my own experience added below. If you want a better understanding of autism, I urge you to look for others’ stories as well.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me. What follows are my words.

My autism has no filters. The quiet little restaurant isn’t quiet. Every table, no matter how far away, is my table. I hear each conversation. I smell each plate of food. I know the busboy two tables over had a smoke break within the last hour. I don’t want to be rude, but I can’t understand the waiter for the din of words around me. Then someone makes a joke. I might have caught the humor in another setting, but I don’t and stare into my drink or blurt out some overly literal and revealing reply.

My autism has no filters. My dress has seams in four different places. One of them brushes my skin, and I must acknowledge it before I can continue typing. Clothes are rigorously inspected before purchase for synthetic thread that will render a garment unwearable after the first wash. Patterned fabric with more than two colors makes me uneasy.

My autism has no filters. Only with intense concentration can I focus only on what is in front of me. This gives me balance problems. I can take the stairs up, but I need the elevator to come back down. I am not graceful. I do not have a strong sense of how close objects or people are to me. I bruise myself on door frames, and flinch when you make conversational hand gestures.

My autism has no filters. I am unable to lie to you. I could try, but I would fail…and cry…and likely vomit. I will not catch you in a lie. I’ve tried for decades to learn how, and know now I simply don’t have that skill. It’s cost me dearly, and almost took my life. What I can do is rely on those who have proven they have my interests at heart, and use caution with those whom I love too much to keep out.

This said. I am proud of who I am and what I’ve done. I’m a wife, mother, and grandmother. I think my unique perspective has made me a better person. Being unfiltered has made me unfettered. I’m rarely embarrassed. I have a personal moral code, and I follow it 100% of the time. Therefore, I have almost nothing I’m ashamed of. I promise little, but I deliver on those promises. I may not be socially savvy, but I am intelligent and analytical, with a keen knack for research and learning. I don’t run on auto pilot. I take in each moment for all I can glean from it. Rather than blindly exist, I experience life. This, more than all the accompanying inconveniences, is what autism truly means to me.

Posted April 2, 2011 by itsbridgetsword in Uncategorized

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