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Imminent Burn-Out? (Part 1—Where I Stood)

  • Posted on November 14, 2011 at 11:29 PM

I recently finished Rachel Cohen-Rottenberg’s books, The Uncharted Path and Blazing My Trail. I’ll do a full review of each book, I promise, but those will have to wait. Right now I must address one urgent issue particular to those adults who either are on the autism spectrum or those who, like me, are close to being autistic, but don’t quite meet the diagnostic requirements.

As I’ve said before, and will again, I have many of the traits attributed to autism, including sensory processing difficulties, language processing peculiarities (a marked difference between speech skills and writing skills), and social processing difficulties. Were it not for the facts that autism (as it is defined by society) is a disability and that many people with legitimate diagnoses of autism struggle much, much more than I do (including all three of my children) and that I feel expressing my experiences as being equivalent to their experiences would detract from their struggles…were it not for these things I would feel wholly comfortable calling myself autistic.

Before I discovered autism in order to understand my children, I had never really understood what set me apart from my peers. I never understood myself. I’ve never felt I belonged in a community better than I belong with autistic adults. While I’ve always (as far as I can recall) understood that people have different gifts and different abilities, before I discovered autism I’d always more or less assumed people experienced the world in more or less the same way. I just wasn’t very good at coping with it.

Compared to the ideal neurotypical, I’m still not good at coping with it. Compared to the struggling autist, I am quite good at coping with it. And, that’s the thing. As far as I understand current diagnostic standards, I don’t qualify for a diagnosis of autism because I cope too well. I’m not disabled. Sure, coping is hard work. Sure, there are some days when I just don’t want to cope with the outside world. There are days when I dread answering the telephone, and would much rather the person trying to contact me via a letter or an e-mail. Sure, I freeze in social situations most people take for granted. But, when it comes to traversing my day-to-day life, and getting by in the world at large, I can cope more or less successfully.

(This is not some sort of gloating self-congratulatory baloney. There is absolutely nothing wrong with being disabled—except for the lack of acceptance, accommodation, and appreciation from the world at large, but that’s a problem with the world, not a problem with being disabled.)

The point is that I cannot, in good conscience, consider myself disabled. I struggle, but I can cope without the kinds of accommodations others need to cope. Sure, those same accommodations would make coping much less work for me. But I can do it on my own, with my own self-provided coping mechanisms and accommodations. There are many people who can’t and they deserve the focus of the autism community much more than I do.

I’ve struggled to communicate this position of being between to my readers, my family, my friends, and anyone else who has a need to know or who just might be interested. I was confident that I’d gotten it down (though there are still those who want to call me autistic and those who are offended when I consider myself close-but-not-quite).

But, perhaps it was time for my understanding to change.

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False Blame

  • Posted on July 31, 2011 at 5:16 AM

This post is in response to Rachel’s recent post at Journeys With Autism about taking care when expressing our experiences of disability. Her post was, in turn, a response to another blogger.

While I’m not going to try to touch on everything Rachel covered (It’s a good post, and I highly recommend you check it out.) there’s a particular passage that got me thinking about an issue that’s been a concern of mine for a long time.

It all started with this:

My concerns on this score only increase when Ms. Baird launches into some of the most fear-inducing words about autism that I have ever read:

Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt.

I absolutely cannot tolerate it when people indulge in these kinds of generalizations about a condition that exists on a very, very wide spectrum. I understand and have compassion for Ms. Baird’s experience, but it is her experience. Yes, it is an experience shared by other families, but it is by no means the universal experience of autism.

I highly recommend reading Rachel’s post, because she makes some very important points that are specific to autism, and apply more generally to discourse on disabilities. However, in this post, I would like to address this from a perspective beyond autism and beyond disability. Simply put, what Ms. Baird is experiencing within the context of the quoted passage has nothing to do, specifically, with autism.

For those immersed in the world of parenting an autistic child, this may seem counterintuitive. After all, those of us with autistic children, especially children with “severe” autism, know it’s almost always challenging, often exhausting, and very, very stressful. But that’s just it. It’s not autism that wears down families, severs familial bonds, or creates blame and guilt. It’s stress. More specifically, it’s our poor or inadequate reactions to stress that have these consequences.

Stop and think about it for a moment. If autism were the cause, then we’d only be seeing these effects in families with autism. But that’s not the case. Nor is it the case that we only see these effects in families with disabled children. No. We see these effects in families that are impacted by a wide variety of stressors, and currently one of the most notable stressors is finances. How many parents have killed their children or their whole families in reaction to financial crises? I don’t know about you, but I’ve lost count. How many more succumb to abusive behaviors? How many people have walked away from their marriages and their children because they lost their jobs, because they couldn’t pay their bills, because they were going to lose their home? Is anyone even counting?

Sure, some families with autistic children experience exactly what Ms. Baird described. But so do families with no autistic children. Autism is not the cause. We have a tendency, as parents of children with autism, to falsely blame autism for our struggles and our challenges. We blame autism for experiences that we think are, at least to some degree, exclusive to ourselves and our “kind,” because we get so caught up in autism that we fail to see our similarities to others outside of ourselves.

People can, and frequently do, react badly to stress. These reactions are to stress, or the experience of being stressed. The cause of that stress is, for the most part, irrelevant when the issue is our reactions to that stress. There are many causes, and there are many reactions; but the causes do NOT dictate the reactions.

What is the difference between the mother who kills her child because her child is autistic and the father who kills his child because he’s broke? Certainly the first evokes great concerns about the perception of autism and disability in this country; certainly the later evokes great concerns about the psychological effects of our economic downturn. But, despite these differences, both are tragedies; both involve the deaths of innocent children at the hands of their stressed-out parents; both are bad reactions to stress.

I’m not a psychologist, a sociologist or an anthropologist. I cannot tell you how different or unusual this reaction is from reactions to stress over hundreds or thousands of years of human society. I’m just a mom. I’m a mom who looks at my kids and is horrified at the thought of a parent willfully killing their own children. It’s outrageous. It’s horrifying. And it’s happening. It’s not just happening to autistic kids. It’s not just happening to kids that are disabled or sick. The phenomenon is bigger than a single stressor. It’s bigger than autism. It’s bigger than disability. I see this and I can’t help but think that something has gone very, very wrong. For all I know this has always happened. I don’t know. But, even if this is some sort of incomprehensible “normal,” it’s wrong. It’s just wrong.

When I brought this up in a briefer form on Rachel’s post, she evoked the word “support.” For those of us within the autism community, support is a major buzzword. It’s a major buzzword in the greater disability community as well. My question is this: why isn’t support a major buzzword in the community at large? The concept of support is not exclusive to disability. We all need support. We all need community support; in fact, that’s the reason why communities exist.

Families disintegrate due to stress, or rather due to poor reactions to stress. The nature of the stress is not what needs to be fixed. There are too many stressors in the world to fix them all. If it wasn’t autism, it could be poor finances; if it wasn’t finances, it could be something else. The cause of the stressor isn’t the problem. The problem is how we respond to the stress. If people get the support they need, I believe responses would improve—again, I’m neither a sociologist nor a psychologist, so my statement is intuitive not factual. My point is that blaming the stressor does not get you the support you need. You cannot choose whether or not your child has autism. You cannot choose whether or not you’re laid off. You can choose how you respond. You can choose to let your family disintegrate. You can choose to take them out with a shotgun. You can also choose to cope, to get support, to reach out, to build community, to help and be helped.

That choice has nothing to do with autism. You can lay the blame for all your woes at autism’s anthropomorphized feet if you’d like, but it won’t do you or anyone else any good. How you deal with the stressors in your life is your choice and your responsibility. Choose wisely.

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RoyalCanvas.com

  • Posted on July 23, 2011 at 11:03 PM

I received an e-mail from Mary Pat Stephenson, who describes herself as “a preschool special needs teacher for 25 years, working with autistic children and their families.” Her sons founded RoyalCanvas.com, a website where you can upload photos and turn them into wrapped canvas prints. Together they are raising money for the Autism Society.

“We created a page on our site where customers who want to get a photo made into a canvas will get a 30% discount and the rest of the profits from every order will be donated to the Autism Society. The page is at RoyalCanvas-Supports-Autism.” You can also view their public profile for the fundraising drive on the Autism Society’s site.

***

Personally, when considering whether to support a fund-raising effort regarding autism, it’s very important to me that:

  1. Efforts to raise funds do NOT use scare tactics.
  2. Efforts to raise funds show respect for families AND individuals with autism.
  3. Funds raised are used primarily to help living autistics and are NOT used to target autistics-in-utero for abortion.

There are organizations I will not support. Autism Society is not, at this time, one of those. On the homepage of the Autism Society, one the first things I see is:

“I am a…

Family Member

Individual on the Spectrum

Professional

Advocate.”

In the small print on the cited site, it states: “All sales proceeds from this coupon will be donated to the Autism Society. The Autism Society improves the lives of all affected by autism through education, advocacy, services, research and support.”

I could argue that “Individual on the Spectrum” should be first. I could argue that “support” should definitely come before “research.” Maybe in time I will. For now, I’m passing along the information as requested. The choice to participate is, as always, up to you.

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Wandering: A Warning

  • Posted on March 18, 2011 at 4:10 PM

ASAN has issued a warning and a call for action.  You can read a brief overview here if you did not get the message.

ASAN has many valid concerns and complaints about this proposal.  Generalizing any behavioral pattern based on poor research is unwise and irresponsible.  From a social justice perspective, attributing a diagnosis to a group of people for whom the diagnosis is accurate to an unknown percentage of the population is an act of stereotyping, which further demeans a minority group and raises serious doubts about the integrity of the medical community.  Furthermore, “wandering” as a medical diagnosis seems questionable in and of itself.

However, as a parent of three children who have exhibited wandering behaviors, I must also object with the language ASAN used to motivate their supporters.  First and foremost, I think it is inaccurate to assume this diagnosis will “encourage” schools to use restraints and isolation.  These activities do occur and they are dangerous.  They should be stopped.  But they are used by unethical schools and staff for the sake of their own convenience; a diagnosis will not justify the use of these methods to otherwise ethical and caring individuals.  Wandering is a safety risk and schools have a responsibility to address that risk and accommodate children who wander.  All three of my boys have wandered at one point or another, and their schools have addressed those risks and found ways to accommodate them, not with restraints or seclusion, but by ensuring their safety and giving them appropriate opportunities to explore their environments.  Parents and schools share responsibility for formulating an adequate and appropriate plan to address these concerns in a child’s IEP.  I also object to the suggestion that wandering is a reaction to “abusive or sensorily overwhelming environments.”  While this can be the case, wandering is a behavior with many causes.  All the wandering I’ve seen associated with autism has been about curiosity and lack of danger awareness.  Children are curious.  Those who lack danger awareness may seek to satisfy their curiosity in unsafe ways, including wandering.  Associating wandering with abuse is far too reminiscent of the “refrigerator mother” theory and other ways that have been used to suggest poor parenting as the culprit for complex behaviors.  Such a generalization can be just as dangerous as the one ASAN seeks to prevent.

It can take less than 30 seconds for a potential wanderer to get out and away from an unsecure environment.  Hyper-vigilance does not equal safety in such an environment.  Measures need to be taken, but they need to be taken in a respectful manner, i.e. not relying on restraints and seclusion.  Attention should also be paid to the environment itself.  If the environment is uncomfortable, then corrections should be made to that environment.  But caregivers must also be aware of other factors, like curiosity and limited awareness of dangers, when addressing safety concerns for a child who wanders.

Wandering is a real problem, and it can be terrifying.  Some children who wander go missing for days before he or she is found, if he or she is ever found or found alive.  That’s terrifying and harmful for everyone involved.  Even if a child is missing for only a few hours or even a few minutes, it’s terrifying.  Yet it serves no good purpose to turn this challenge into a stereotype.  It’s an individual issue and the solutions are individual and specific.  It is irresponsible for the Centers for Disease Control and Prevention (CDC) to attempt to make wandering—a behavior attributable to many factors—a medical diagnosis.  It is irresponsible for schools and other organizations to use such a diagnosis to justify harmful practices.  It is also irresponsible of ASAN to attempt to motivate their supporters by noting possible worst-case scenarios from a social justice perspective without also noting that there are real concerns about the safety of some individuals with autism.

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Disability Blogs

  • Posted on January 28, 2011 at 11:22 PM

I am honored!  The Goldfish cited me on her post: An Entirely Biased Who's Who of the Disability Blogosphere, January 2011.  I hadn’t expected that.  While I blog in the hopes of influencing the many divided autism communities—and in blogging I have grown more aware of and concerned for the greater disabilities community—I had never expected to be regarded by anyone as among the Who’s Who in that community.  I am truly honored.

The Goldfish also challenged us to create our own list of important disability bloggers.  I do not propose the following as a complete list—or even as a complete list of those blogs I find to be important.  Every time I’ve tried to do so, I’ve been told my list was too overwhelming, i.e. too long.  There are a lot of worthy bloggers out there.  Only a fraction of them are listed among my blogrolls, but even that fraction is “too long.”

What follows is a list of bloggers that have been especially influential for me personally.  I hope you can appreciate these fine bloggers as well, and perhaps explore the many other blogs listed to the right.

One of the first disability blogs I encountered was Estee’s The Joy of Autism.  Estee’s blog, and her friendship, have meant a great deal to me over my journey of discovery, and her writing still rings with relevance and grace every time I read it.  As such, she takes a very special place on this list, but she is a first among many.

Group Autism Blogs:

Shift Journal – Mark is the editor and a regular contributor here, and a man with an intriguing mind, who has a lot to contribute.  This blog has a more philosophical focus, which I find particularly appealing.

Left Brain/Right Brain – This blog is much more focused on news and science, which is important considering the very science surrounding autism is highly controversial.

The Thinking Person’s Guide to Autism – This is an eclectic, relevant autism blog, though it’s hard to pinpoint a focus.  The closest thing I can come to a focus is “correcting misinformation.”

Autism Blogs:

Comet’s Corner – This is a personal blog written by Clay.  His years of experience, and willingness to share his life and struggles, make this a very powerful blog that resonates strongly with me.

Aspitude! – Elesia’s blog is a powerful advocacy statement.  She frequent interviews others, introducing even more people to prominent members of the community at large.

Life with Aspergers – This one comes across as a parenting blog at first glance, but Gavin writes from a base of personal experience as a father on the spectrum raising children on the spectrum.  This dual role adds special insight to his posts.

Autism Herd – This blog is a powerful story of family—written by Kathleen, the mother of this family.  While autism plays a big part in these stories, it’s about family and living life with joy through the challenges they face.  Kathleen tells her stories with such wit and humor—it’s totally refreshing!

Disability Blogs (non-autism):

Brilliant Mind, Broken Body – Through this blog, I’ve been able to relate to the wider disability community.  Kali faces many physical and psychological challenges, and she relates her experiences in a way that makes them tangible for those of us who do not have direct experience with the challenges she faces.

Rolling Around in My Head – Dave, of course, is both a person with disabilities and a long-time disability advocate.  The confluence of his personal and professional experience creates such a powerful message—he’s great at triggering those “aha!” moments.

 

As I said, this list is far from exhaustive, but it’s a great place to start!  Enjoy!

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Stand With Whom?

  • Posted on January 14, 2011 at 6:17 PM

I recently read a post by Rachel Cohen-Rottenberg over at Journeys with Autism entitled “Autism Parents: It’s Time to Stand Up With Us.”  My reaction to this post was mixed.

Rachel starts off addressing a very specific issue, namely parent who make comments like:

How disappointed the person is to have an Autistic child

How angry the person is that his or her Autistic child isn’t “perfect” (and yes, that word gets thrown around a lot)

How altogether unfair it is not to get the child the person dreamed of

How getting an autism diagnosis is like finding out that someone has died

How autism is analogous to a fatal disease

Regular readers of this blog (and probably most irregular readers, as well) know I am not one of those parents.  I do not make those comments.  I believe those comments stem from parents focusing on themselves when they should be focused on their child.  Self-centered parents make for maladjusted kids, regardless of their diagnosis or lack thereof.  So, know that I am not defending these parents in any way.

Rachel goes on to ask:

Why do these people say these things? Do they think we’re not listening? Do they think we don’t have feelings? Do they think, in some secret place in their minds, that we really are second-class citizens, of no particular importance? Or do they consider us such a burden that they’ve decided that their feelings trump ours?

I’m totally on board with that.  Those questions—and the way she develops them—are important, worthwhile questions that stem from a very painful experience.  I get that.  I really do.

Then, Rachel turns this reflection around by asking: “What can we do to stop this from happening?”  Considering the title of her post, “Autism Parents: It’s Time to Stand Up With Us,” I think we can assume the conclusions she draws.

But—and this is where I obviously stray from total agreement—the trouble is it’s much, much more complicated than that.  See, the questions Rachel asks and the conclusion she draws creates the same line in the sand that those parents create. 

It’s us/them thinking.  And that is the problem.

The challenges autistics present to society and the challenges society presents to autistics are situational.  A great big part of this awful situation is us/them thinking.  The us/them thinking starts in the form of bigotry and misunderstanding, which leads in turn to us/them thinking in the form of autistics versus non-autistics. 

It’s not us versus them.  It’s all of us. 

You see, I am not neurotypical.  I do not identify as neurotypical.  But I’m not quite autistic either.  And, you know what, I’ve stopped going on certain autism blogs because of all the hate directed at me for not being one of them.  And I am one of those people Rachel hasn’t seen calling out to other parents of autistic kids and telling them they language they’re using is demeaning!  Yet, I’ve been hated off autism sites for not being autistic.  That’s us/them thinking.

Rachel cites many other social movements.  She states that it takes people on the inside and the outside of those groups to evoke the kind of social change that is necessary.  She’s right, but that doesn’t just happen.  And it doesn’t happen by saying “stand with us.”  It happens when the people involved—both the people within and the people outside the minority group—identify more with being people than they do with being inside or outside the minority group!

So, when Rachel says, “stand up with us,” the “us” should refer to fellow advocates.  Unfortunately, that doesn’t seem to be what she means.  Rachel ends her post: “So if your heart is broken by the way the world treats your children, stand up for them by standing up with us. Their fate is inseparable from ours.”

I’m sorry.  I don’t agree.  Our fate is inseparable.  No us, no them, and no yours.  You cannot unite by dividing.  You cannot join by categorizing.  You cannot call together by alienating.  The issues we all face are situational; it’s not them versus us or us versus them.

*takes a deep breath*

See, I prefer stories.  Stories can show, and showing can teach, and that just makes it all the more real, at least for me.  So, let me leap back a few years and show you what I mean.

Years ago, my children were in Early Childhood classes and the Birth to Three program (pre-school for children with special needs), because they had demonstrated developmental delays.  We didn’t know why, and nobody was very forthcoming with recommendations on where we could get additional help or *gasp* explanations.  As my husband and I saw it, our children were developmental delayed and we were working hard to address those delays; since no more help or information was forthcoming, we did the best we could with what little we had.

Then comes my sister-in-law’s wedding.  We were at a special dinner with “just the family,” which happened to include a lot of people, including people I’d met only at my own wedding and some others who I didn’t remember ever meeting at all.  The dinner was held in a long dining area at a local restaurant.  It was loud, dark, busy, chaotic, and smelly (not bad smells, just a lot of them).  I hadn’t figured out how to cope with these situations very well myself yet, so you can imagine it did not go over very well with my un-accommodated autistic toddlers.

*sigh*  I look back at times like that and I cringe.  I want to kick the self I was back then.  I want to scream at me, saying, “Can’t you see what this is doing to your kids!?!”

The truth is I saw, but I didn’t understand.  I rely very much on words to process information.  I can process ideas and feelings, but I rely on words to ground them in expressible reality.  I knew I needed to get out of there and that my kids needed to get out of there, but I couldn’t explain why we needed to get out there—not to myself and certainly not to my family.  So, I was stuck with the obligation of being there and keeping my kids there…until we were all thoroughly melted down and had an excuse—I mean, a justifiable reason—to leave.

So, I look back and I want to kick myself, but I also forgive myself for my ignorance.  I DID NOT KNOW.  I COULD NOT KNOW.  So, I rest assured I did the best I could, however poor my best happened to be at the time.

Anyway, the really momentous thing did not happen until after we left the room.  My mom, who was invited to help with the kids, and I took the boys out into the chilly, blissfully quiet outdoors, so my lovely children could scream their bloody heads off in peace.  Because, of course, they were past the point of consolation; they were thoroughly melted down. 

First, my mother in law came out, full of concern.  Then, my grandmother-in-law came out, full of concern.  After a little while with us, my grandmother-in-law took me aside, with someone else holding the fussy child, and said very softly, very gently: “Something’s wrong.  You need help.” 

Yes, I knew that on some level.  Yes, we’d tried and failed to get that help.  But this woman was the matriarch of my husband’s family, and had lived her life as a nurse to boot.  This woman had authority, and the soft, gentle way she said those words added more impact to the words than shouting could have done.

Now, I want you to think about what she said for a moment.

*….thinking…thinking…thinking…*

Okay, how ‘bout I put it this way:  She didn’t say “your kids are monsters and you need to get them fixed.”  Believe me, the way they were acting there are a lot of people who would have said something to that effect and they all seem to hang out in grocery stores.

“Something’s wrong.”  Not: “Something’s wrong with your kids” or “your kids are broken” or any of the number of insensitive, painful ways the subject is broached to many, many parents of children with autism.  “You need help.”  Not: “Take them to the doctor” or “can’t you give them a pill or something” or “you really need to teach your kids some manners” or the many other painful things parents of children with autism hear on a regular basis.

Those precious words—“Something’s wrong.  You need help.”—were the foundation for us.  We were very, very lucky to have that as our foundation.

I’m not saying all the good we’ve done for our children can be laid at my grandmother-in-law’s feet.  Mark and I certainly have done our parts, and the information we’ve gotten from many parents of autistic children and many autistics themselves has helped a great, great deal when it comes to us having done/continuing to do our part. 

But she gave us the foundation we needed to look at the situation as the problem.  Very, very lucky, for us and for our kids.

*another deep breath*

I agree with Rachel that it is intolerable that people with autism have grown up and continue to grow up believing they are some kind of tragedy.  That has to stop.  But, it’s not going to stop with us/them thinking.  It stops when we force ourselves to look at the situation as the problem, and how we—all of us who care about autistics—can address that problematic situation.

The problem is not the autistics.  The problem is not the parents of the autistics, who may or may not be neurotypical.  The problem is that we divide ourselves, because we believe we are fundamentally different.  We’re not.  We are fundamentally the same with individual differences that make each and every one of us special, worthwhile human beings.

We can stand together, as advocates and as emissaries.  But we cannot stand with you; we are you and you are us.  Some of us just haven’t figured that out yet.

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Retraction: Interview with Stephen Roberts from The Dark Fiction Spotlight

  • Posted on January 10, 2011 at 1:02 PM

On October 26, 2010, I wrote a scathing post about The Dark Fiction Spotlight for hosting an autism anthology that stated in the guidelines, “Anything that will offend Autism Speaks will offend me and will not be considered.”

I didn’t really expect a response from the magazine.  I certainly didn’t expect the response that I received from Stephen Roberts:

I stumbled upon this blog by chance and it pains me that this is the image you’ve gained of myself, my associations and my magazine, The Dark Fiction Spotlight.

I wish to tell you about the autism anthology that will never be. 

[You read the rest of the comment here.]

Well, to say the least, this required a retraction.  But I was curious.  I wanted to know more.  So, I contacted Stephen Roberts, and was granted an interview.

You stopped participating in the autism anthology you were working on with Autism Speaks.  Where did this project come about and what ultimately made you make the decision to pull out of the project?

Well, to be honest, I’m new to the politics and such of autism. All I knew was what I learned from my nephews as I watched them grow. I was tapped by a publishing company preparing to launch that was to be run by a good friend of mine and she said she wanted to do the occasional charity anthology, to which I immediately thought of autism and my nephews.

Once announced, I received a great deal of support from the literary community, but also an outcry as to whom I’d associated myself with and more so my nephews, as they were to be involved in the cover art.

I immediately hit the web and started looking up every forum on autism I could and I found out that autism speaks.org didn’t represent my views on autism to say the least.

You are still interested in pursuing a similar project.  What are you looking for in recipients to the funds you raise?

I would still love to do something to help out the families touched by autism, namely the education of children and even the continued education of adults. I have found that many people write off those with autism, whereas all they need is a bit of patience from us to show us how brilliant they are.

I’m open to collaborate with somebody that has the vision and perhaps even the connections to get the funds earned to the proper place.

I also feel like we need more sites that represent the community of those touched by autism and not just the same biochemical explanations. More communication, less misinformation.

You are helping your sister raise your nephews, who have diagnoses of autism.  How has that changed or shaped your views on autism? 

Frankly, I knew little to nothing about autism several years ago, but when my oldest nephew was diagnosed (he’s 8-years-old now, his brother is 6-years-old), I sort of understood it, but mostly just did what I had to do for them on a day to day basis. I know their autistic, but to me they’ve never been “special” or hindered by anything.

I guess we (my family) must be doing something right, as their schools consider them to be gifted and they grow both socially and academically in leaps and bounds. 

What do you consider the most important areas for research in autism?

Again, to me I believe it to be all about education. Isn’t it a magical idea that my nephews could be given a shot that would immediately “fix them”, giving them perfect speech and altered personalities?

I do not mean to insult anybody on their views, but I just personally feel that education is key to the benefit of an autistic child as to ensure a healthy and prosperous adulthood.

I’m always open to learn more about the study of autism and welcome all opinions and websites to learn from.

If you had the opportunity to interact autistic adults, what would you most like to learn from them?

 If I could ask anything, it would be what I can potentially look forward to in the growth of my nephews. I’d love to know their views on the political stances taken on autism and the politicians who seem to be asking everyone but them.

I know that autism doesn’t make you “slow” or anything to the like, but in fact simply one who views this world from a different perspective. That’s something special in itself and anybody should want to converse and learn from them.

I hold my nephews to the highest of standards as far as their futures go and I’d just love to be able to know the stories of others and what they’ve achieved as individuals. Much like how a high school student might want to know what to expect in college, I’d just love to see what’s next. 

What change do you consider most important in how we, as a society and a world, address the challenges presented by autism?

I think we all just need to listen more. For one, I think that the whole puzzle piece symbolism is absolutely insulting. I don’t know if this is the consensus of the community, but once I really thought about it I didn’t like it. It implies that they’re not human or just don’t fit with us as a society.

What I’ve seen with my nephew’s teachers is that patience is key; all students are different, but they will tell you what they need if you’re willing to listen. No assumptions, no exceptions. 

For my readers who also write speculative fiction, can you give any tips on how to break into The Dark Fiction Spotlight?  (Also, do you have any idea when submissions will open again?)

Well, I wouldn’t say it takes much more than a love for your craft and the darker side of fiction to fit in with us folk. We’re open to most concepts as long as it’s dark in nature and the only thing we do not like are those who don’t take writing seriously.

We as a group do not believe in writing to be a hobby anymore than it is a talent to be born with. All the best writers I know don’t sleep some nights as their so obsessed with their craft.  Unhealthy? Perhaps. Does it pay off at times? Yes.

But all in all, Daniel, Stacy, Thadd and I are pretty easy folks to work with, at least I think so.

Unfortunately The Dark Fiction Spotlight is on hiatus, but not in a negative sense. We’re developing a solid game plan to take our 4theluv/contest money e-zine and evolving it into a print/digital magazine at pro rates. This is something we take very seriously and do not wish to rush just yet. We’re also considering anthologies, contests and things to the like on the site until said launch, so please do keep in touch with us and or visit the site to see what’s going on.

The site:

www.thedarkfiction.com

TDFS submissions/query e-mail:

tdfspublication.subs@gmail.com

While I cannot apologize for my gut reaction, I sincerely apologize to Stephen Roberts, The Dark Fiction Spotlight, and my readers for not researching the proposed anthology more extensively.  I know I’ll be check in with The Dark Fiction Spotlight from time to time, and I hope you do as well.  And I hope Stephen Roberts gets to edit the anthology he was hoping for!

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Offending Autism Speaks

  • Posted on October 26, 2010 at 2:16 AM

Okay, so I didn’t intend to take a break from my bullying series until I’d finished with it.  But, I think this is worth it.

For those who don’t know, I am a professional writer—a professional writer at the beginning of my career, but a professional writer nonetheless.  I write full-time.  I make money.  I have been professionally published.  I’m writing two novels and a non-fiction book, along with many other shorter projects.  I market my skills to local businesses (and sometimes not-so-local businesses) and I get paid well for my work.

My point is that I have many interests.  One of the interests I’m resurrecting, after years of studying business, is my fiction.  I’ve neglected my fiction sorely over the last decade of child-bearing, autism-diagnosing, and degree-getting.  Now it’s time for that passion to be re-born.

While I make some effort to keep my variety of interests separate, there is some overlap.  The main character of one of my novels is rather Aspie-ish.  (Though, I’m not going to call her an Aspie—if, for no other reason, then because she’s a fairy.)  My other novel, which is being co-written by a friend of mine, has strong “outsider” themes.  My non-fiction book melds my interests in autism and business and confronts one point where those interests overlap.

Then, there are other, less pleasant, intersections.

I receive many newsletters for writers, including Writing World.  I scan the articles and choose which ones I’ll read in detail.  One I chose to read in detail was about dark fiction markets, written by C. M. Saunders.  This article recommended The Dark Fiction Spotlight as a token-paying market that publishes dark fiction.  So, I checked it out.  As I was scanning pages on the website I found a sub-tab called “Anthology for Autism.” 

Hmm, I thought.  Now, that could be cool!  I have an idea of for a short story that is both dark, science fiction and involving an autistic main character.  The story isn’t written; it’s one of many projects that has been postponed due to time-constraints.  But, I figured if there’s actually a market for it…

So, I started reading about this anthology, and it starts with:

About Autism Speaks:

Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we’ve been able to accomplish and look forward to continued successes in the years ahead.

Oh, dear.  It didn’t look quite so promising any more.  But, I kept reading.  Maybe they’re open-minded.  But, then…

I repeat:

Anything that will offend Autism Speaks will offend me and will not be considered.

Honestly, my story would definitely offend Autism Speaks.  And, frankly, I wouldn’t have it any other way.  I remember trying to interview someone at Autism Speaks once.  It didn’t go well.  It wasn’t even an advocacy piece, but that didn’t matter.  Even a piece designed to inform parents of their information options offended the Autism Speaks representative I spoke with.  They were only willing to participate if they had full control over what I wrote, which is an ethical no-no in the journalism world.

So, I took a break from my bullying series to warn my fellow speculative fiction writers and autism advocates that The Dark Fiction Spotlight or Lady Luck Publishing might not be publishers you want to patronize or write for.  As much as I hate to write off potential markets, I won’t be pursuing any opportunities with them.

* * *

For those who read this blog and don’t already know, this last part provides reasons why such an affiliation with Autism Speaks requires me to boycott this company and it’s zines.

In a sense, all of this is about bullying. 

Autism Speaks claims they exist to advocate for families with autism, but only 4% of the donations goes to those families.  They fund research, and one of their major projects seeks a way to diagnose autism in utero, which is a form of eugenics.

That is why I disagree with Autism Speaks’ agenda.  But that, in and of itself, does not warrant boycotting (though it is why I would not donate to their organization).

Autism Speaks goes even further than this.  Autism Speaks is an organization that intentionally spreads fear and despair.  They use advertisements that amount to hate speech against autistics.  They encourage parents to fantasize on camera about killing their autistic children, and use this as a reason why autistics should be eliminated from society.

They use “Autism Speaks” as their name to claim that they speak for autistics; they don’t.  Autistics can and do speak for themselves, like these protesters.  On the site for the anthology, there’s this branding slogan: “Autism Speaks. It’s time to listen.”  Autistics, in return, says: “Autism Speaks needs to listen.”  Instead, Autism Speaks actively tries to silence those not in agreement with their eugenics agenda.

If this wasn’t bad enough, they engage in unethical business practices.  They mislead donors as they raise funds for their research.  They try to control media elements, as they did when I tried to interview one of their representatives.  And they bully their way through politics and the social landscape.  Their message is clear:  If you don’t feel bad (or even homicidal) about having an autistic child, then there’s something wrong with you, because autism has stolen your child’s soul.  (Yes, the soul-stealing is paraphrased, but with their very words one of their representatives has used.)

As an organization, Autism Speaks is a bully—a well-funded, politically powerful bully that believes that eugenics is the solution to autism.  And that offends me.  They use their size and their wealth to attempt to stomp out disagreement.

And they create anthologies where one point of view is all that can be expressed, because they don’t want their audience to become aware of differing points of view.

That offends me.  Autism Speaks offends me.  As a business person who believes in ethical business practices and as a parent of three children with diagnoses of autism, Autism Speaks offends me.  And I cannot write honestly and not offend them in turn.

I wouldn’t change that even if I could.

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ASAN Update: Joint Letter

  • Posted on June 13, 2010 at 12:44 AM

Joint Letter on Cross-Disability Representation in Designating Medically Underserved Populations

To:

Kathleen Sebelius
Secretary
Health and Human Services

Mary Wakefield
Administrator
Health Resources and Services Administration

Pam Hyde, JD
Administrator
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of “Medically Underserved Populations” (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don’t want to pay interpreters or “bother” with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, “[p]eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities.” Further, “[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.”

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft “A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions “ by the HHS Working Group on Multiple Chronic Conditions” (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine “medically underserved populations,” HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)

Sincerely

Access Living
ADAPT
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women's Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV - The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
TASH
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

References:
Bachman S., Vedrani, M., Drainoni, M., Tobias, C., Maisels L., , Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities J Disabil Policy Stud.; Winter 2006; 17, 3; 130-136
Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646
Colton CW., Manderscheid RW.. (2006, April). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease: Public Health Research, Practice and Policy. 3(2), 1-14. Available at www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16539783.
Corbin S., Holder M., Engstrom K. (2005) Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. (2006) Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 17:101-115.
HHS Working Group on Multiple Chronic Conditions. (2010, May) Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions. (Draft) Available online at:
Iezzoni, L.I., (2009, January 27) Testimony before the Senate Health, Education, Labor, and Pensions Committee, by Lisa I. Iezzoni, MD, Professor of Medicine, Harvard Medical School and Associate Director, Institute for Health Policy, Massachusetts General Hospital, Boston, MA.
Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-961.
Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC
Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.
Kirschner K.L., Breslin, ML., Iezzoni, LI., (2007, March 14) Structural impairments that limit access to health care for patients with disabilities. JAMA,. 297:10:1121-1125
Manderscheid R., Druss B., Freeman E . (2007, August 15). Data to manage the mortality crisis: Recommendations to the Substance Abuse and Mental Health Services Administration. Washington, D.C.
National Council on Disability (NCD), (2009) The Current State of Health Care for People with Disabilities. Available online at: www.hhs.gov/ophs/initiatives/mcc/federal-register051410.pdf
US. Department of Health and Human Services. Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health. 2 Vols. Washington, DC: U.S. Government Printing Office, November 2000

[Cross-posted with permission]

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The Black Balloon: A Review

  • Posted on June 4, 2010 at 2:10 AM

The Black Balloon is an award-winning Australian movie that is, on the surface, one portrayal of autism through a non-autistic brother’s point of view.

When taking The Black Balloon with that premise in mind, it’s a movie I found to be both honest and challenging.  The movie takes risks, which I like from an artistic standpoint.  It has a solid, not-too-subtle message of acceptance at its core, which I like from an advocacy standpoint.

If taken outside that premise the movie can be problematic.  This movie is biased.  Charlie, the brother with autism, is not the viewpoint character.  Nor is he the main character.  While he is not dehumanized, The Black Balloon does not tell Charlie’s story.  For some viewers that’s going to be frustrating.

At face value, Charlie seems to be “the problem” that the plot intends to solve.  Thomas, the non-autistic brother (also the viewpoint character and the main character), starts off the story seeing Charlie as the problem that needs to be solved.  This can be hard to watch.  There is violence between these brothers, which can be hard to watch.  There is violence between the parents and the children, which can be hard to watch.  Charlie’s autistic traits are emphasized to the point of stereotyping, which can be hard to watch.

But—and this is a very important but—that bias is not the movie-maker’s bias; it’s Thomas’ bias.  This movie is about transforming Thomas’ perceptions of his brother.  It’s about Thomas’ journey as he grows towards acceptance, reaches for understanding, and builds an appreciation for the person Charlie is.

If I had to classify The Black Balloon, I would not call it an “autism movie” or an “advocacy movie” or even a “prejudice movie,” though there are elements of all of that within this movie.  The Black Balloon is a coming-of-age movie, in which Thomas must come to terms with his brother as he is as part of growing up.  So, while there is stereotyping in the movie, it is because for most of the movie the viewpoint character sees his brother as his autism, not because that is how the movie-maker’s envisioned Charlie.

Another thing that makes this movie problematic is my concern that viewers who have no direct experience with autism might mistake this portrayal of one autistic character as a portrayal of autism as a whole.  Obviously no movie can do that, but that doesn’t stop people from internalizing a movie and using that movie as their basis for understanding. 

Yet, despite the hard-to-watch parts and the risks of further stereotyping, the movie resonates with me.  I have a great appreciation for the parents’ struggle to provide opportunities for both their children.  I have a great appreciation for the mistakes the parents make.  I have an appreciation for Thomas’ struggle to come to terms with his own life and all the people within it.  And I have a great appreciation for the subtle way the movie-makers showed Charlie as an outsider looking in, even within his own family.  I liked how they showed that there was a person behind the stereotype—a person who wanted very much to be included in his brother’s life and for his brother to take part in his life.

Overall, I would consider the movie to be very well-done.  It’s a story with a point, but the focus was on telling the story, not on telling the point—which is very much appropriate.

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