28 December 2006

More thoughts on 'not-quite-Asperger's Syndrome' Syndrome

In my post 'Not-quite-Asperger's-Syndrome Syndrome' I intentionally kept the satirical/sarcastic tone of the original article, my only acknowledgment of the true nature of that article being an emoticon at the end and a 'satire' technorati tag. Most of the conversation I've seen on this article - some resulting from my original post - has been critical of the intent and execution of the article. I must admit, though, that I found it - if not humorous - entertaining and well-aimed. (For more discussion on the original article, check out How DARE They! What Do NTs Know Anyway?)

A recent episode of the TV show House, which Joseph also mentions in his response-post and which Autism Diva blogged, came to mind.

But my real thoughts were along the lines of, "Wow, now we know that autism awareness is increasing. If someone can make fun of autism and autistics in such a knowledgeable way, that means they are aware of the issues." Or, as griffen quotes Gandhi

First they ignore you. Then they fight you. Then they laugh at you. Then you win.
I'm not sure this means that we 'win,' whatever that may mean in the context of autism awareness, but I see this as progress in our fight. As an individual, it is sometimes painful to be at the butt of a satire. But solid, well-informed satire is good for society. And this, I think, gets to the heart of some of the key issues surrounding autism (and disabilities in general), at least in my mind.

At what point do the needs/rights of society at large outweigh the needs/rights of individual members of that society? Or, maybe even more to the point, do the needs/rights of society ever outweigh the needs/rights of an individual?

No answers from me, at least not this year.

Happy New Year everyone, and keep up the good fight!

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22 December 2006

Not-quite-Asperger's-Syndrome Syndrome

I have my Google News page set up to show top stories in several categories, including Autism and Asperger's Syndrome. Most of the stories are routine types of things, personal stories, communities trying to deal with autism, and the latest medical studies. One of the latter caught my eye today; how can you miss a story with a title like Study: Most Self-Diagnosed "Asperger's" Patients Just Assholes?

The article addresses the recent phenomenon of people, mostly young adults, who are self-diagnosing Asperger's as an explanation for their "peculiar and often abrasive personality."

For years Soshul wondered what was wrong with her. Although her online life was rich and fulfilling, her "real life" inability to get along with coworkers or maintain a romantic relationship had become a source of deep frustration. At long last she was now armed with a medical term for her peculiar and often abrasive personality. For the first time since early childhood, she felt comfortable in her own skin.
Unfortunately, this recent study has found that these mostly 20-somethings may be jumping to a premature, and false, conclusion.
According to a new study in the current issue of The Lancet, however, Soshul and others may be completely off base. After rummaging through piles of data spanning years of clinical research, the study's authors have concluded that a majority of these self-diagnosed Asperger's patients are actually just intensely unlikable people.

They are, in short, assholes.
Needless to say, the study didn't receive too warm of a reception from those it implicates.
Dr. Leon McCouch says that he and the rest of the research team fully understood that their work might be controversial but were completely surprised at the torrent of hatemail and online death threats that followed its publication.

"It was never our intent to insult or upset people," said McCouch. "But as medical professionals, we would be remiss in our duty if we were to stand by and allow these people to incorrectly tie their boorish behavior to Asperger's Syndrome. Then again, I suppose we should have anticipated this reaction. What else would you expect when you speak truth to a bunch of assholes?"
McCouch and his team are not implying that some of these people are not actually Aspie's, and make it a point to show that what they are trying to do is get those who actually have Asperger's to get a professional opinion on the matter.
McCouch went on to explain that his group's intention is to encourage folks who feel they have Asperger's to get tested for the disorder. For most of these people, however, the desire for an official diagnosis is grossly outweighed by the very real possibility that they will be told that they don't have Asperger's Syndrome.
As you may expect, this is not the end of the story. Dr. McCouch will be providing some more details on the question in future reports.
Under intense pressure, McCouch has agreed to write a follow-up to the article for the next issue declaring a new medical definition for the not-quite-Asperger's-Syndrome Syndrome that appears to be spreading so quickly among America's 20-somethings. The disorder, to be known as "Ass Burger's Syndrome" should become official by February or March of next year.
I can hardly wait.


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18 October 2006

"Every soul is perfect" - Is there autism in heaven? (Redux)

Last December, I ended a post with the following question: If there is indeed a heaven, and our autistic children go there when they die, will they still be autistic? The answer, according to the writers of the CBS show Ghost Whisperer is an unambiguous "NO."

In case you're not familiar with the show, it is about a woman - Melinda - who helps the troubled spirits of those who die "cross over" into the light. Last Friday's show (13 October) was about an autistic man who died but was not ready to leave. About half way through the episode, Melinda and her husband - Jim - realize that the man is autistic and that that is why they are having a hard time communicating with him and trying to figure out why he won't cross over. Here's the conversation they had (paraphrased to the best of my recollection) :

Jim: But if he's dead, why is he still autistic? Shouldn't he be cured?
Melinda: Yes, every soul is perfect. Maybe he has to cross over first.
Aack! Phbbt!

I'm sure many of you started sputtering at Jim's question, I can only imagine the reaction to Melinda's response. At the same time, I know that there are just as many people who agree with what these two characters said and believed, who can't imagine that these 'damaged' people would remain damaged for eternity.

To be fair to the show, it was actually presented a decent portrayal of the issues and challenges around autism. A group home for autistics was shown, with the 'director' of the home explaining autism a bit to Melinda. Though she touched on some common characteristics, she did not stereotype autism. The (dead) autistic man was living with an autistic woman and died accidentally. He was trying to reunite his girlfriend with her mother - who had institutionalized her many years earlier when doctors blamed the autism on her (refrigerator mother) - before he could cross over.

But that one little statement, that I'm sure the writers didn't even think about beyond "where's a good place for him to ask this question," pointed out a - THE - fundamental divide between people when they talk about autism: is it something bad to be feared and eradicated; or is it something to be understood and accepted?

--- Note: In case you're wondering, they didn't explcitly show the man being 'cured,' but his mannerisms and demeanor changed as he was crossing over in a way that could only mean that he was, indeed, becoming a 'perfect' soul.

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21 September 2006

Genetically engineering FOR deafness

I had the TV on MSNBC this evening for about 2 minutes, during Tucker Carlson's show. Here's (a paraphrase of) what I heard Tucker say:

Some deaf parents want to be able to test for deafness. They want to make sure that their children are deaf like them. [blah blah blah] Now, it's one thing to genetically engineer the sex of your kids, but can't you agree that genetically engineering your kids so that they are born deaf is just wrong?
His guest, of whom I know nothing about, hedged and didn't really answer. I'm not even really sure what the show was about (like I said, I only saw about 2 minutes and didn't pay a whole lot of attention). But, given the discussions I've been involved in through this blog, those couple of lines just kind of jumped out. Got me thinking.

I think I'll wait to discuss in more detail until I've had a chance to read the transcript this weekend, but I'm sure it will be on my mind.

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25 August 2006

Big Idea: Neurodiversity

A couple of weeks ago, I had the pleasure of attending the inaugural Soulard Idea Market here in St. Louis. As part of the event, our host Matt Homann posed a few topics for discussion in a session he dubbed 'idea speed dating.'

One of the topics was, “What is the most compelling idea you’ve heard in the last year?” My response: Neurodiversity. You can read my post about this on my other blog, No Straight Lines.

I don't say much, except to throw the idea out there for people who don't live in Autismland to consider. Obviously, comments are welcome here or there.

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24 August 2006

Words of wisdom - Be yourself

Came across these words of wisdom from Dr. Seuss this morning:

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind.
Kind of says it all.

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20 August 2006

Looking for some Pokemon stuff

Indulging a certain passion (though not this one), I'm looking for a couple of hard to find Pokemon items. Any help is greatly appreciated.

  1. A copy of the US version of Pokemon Box for Nintendo Game Cube
    • Pokemon Box is no longer available (at least as far as I could see) at the Pokemon Center.
    • There are non-US versions of Box on e-Bay and other sites, but I’ve not seen a US version
    • The guys at the local game shop had never heard of Pokemon Box.
  2. A copy of the Pokemon Colosseum Promo Disk (again for Nintendo Game Cube)
    • This is available on e-Bay and other sites, but for quite a bit more than I’d like to fork out.
    • I asked at the local game shop, figuring their prices might be a bit better than on e-Bay, but they don’t deal in Promo Disks (though they said they’d keep an eye out).
The purpose of this request, if you’re not familiar with the world of Pokemon, is the elusive goal of “Gotta catch ‘em all!”

If would like to respond to this request (either part), please drop a note in the comments or feel free to drop me an e-mail at nsl@gbrettmiller.com.

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18 August 2006

Back to school - some thoughts on being different

I spent the morning a couple of days ago at a high school freshman orientation. We all know the horror stories of the push to fit in to the social environment of high school. It occurred to me as I was watching the kids that it must be very hard for the neuro-typical kids who are ‘different.’

For autistic or other ‘special’ kids, the typical kids kind of expect them to be different. “Oh, that’s just him, he’s autistic you know.” But for the different NT kids, it must go something more along the lines of, “Man, that kid is just weird” and “Hey, Bobby, why don’t you act/dress/speak like the rest of us?”

I guess that is really just good old-fashioned peer pressure.

We can only hope that all kids are able to be themselves and achieve their own destinies, despite any attempts – however benign or malicious – to make them change.

Here are some lyrics from a song that you may recognize. A rant against the shallowness of conformity, and a hope that we can achieve more:

What happened to the dreams of a girl President
She's dancing in the video next to 50 Cent
They travel in packs of two or three
With their itsy bitsy doggies and their teeny-weeny tees
Where, oh where, have the smart people gone?
Oh where, oh where could they be?

Disease is growing, it's epidemic
I'm scared that there ain't a cure
The world believes it and I'm going crazy
I cannot take any more
I'm so glad that I'll never fit in
That will never be me
Outcasts and girls with ambition
That's what I wanna see

Disasters all around
World despaired
Their only concern
Will they **** up my hair
In case you don't recognize the song, it is Stupid Girls from Pink.

tagged as: AutismAsperger's Syndrome

30 June 2006

Focusing on what we have in common

Declarations of a fixed opinion, and of determined resolution never to change it, neither enlighten nor convince us. Positiveness and warmth on one side, naturally beget their like on the other.

-- Benjamin Franklin
I had originally planned for this to be a short post to let everyone know that 29 Marbles is going to go on summer hiatus. As you can see, though, this is anything but a short post. A couple of things have come together in my mind over the last week or so that have led me to feel the need to make a few more parting remarks.

Here in the US this is an election year, which means that partisan politics is everywhere in the news. Much discussion about the value of the proposals, etc, but also quite a bit of discussion (as always) about the nature of partisan politics. Is it good? Is it bad? Is it necessary, or could we get by better without it? Some say it is vital, some say it is the root of all evil in the world today.

These thoughts were on my mind this past week while getting my daily fix of blogs, and I couldn't help notice - as Wade Rankin has - that the autism community seems to be becoming increasingly partisan. Maybe it has always been so, and I'm just now becoming aware enough of the larger autism community to realize it. But even within the sub-communities of autism I've been part of I've noticed a hardening of opinions by many people. Intentionally or not, quite often this comes across as, "I'm right and you're wrong, why can't you just see that?"

Maybe this is an inevitable result as people explore a question, examine their beliefs and understanding of the question, and decide how to move forward. After all, at some point you do have to act, and that is infinitely easier if you have a clear understanding of what you believe and don't have to worry about changing what your doing later because your beliefs change.

The other thing that happened this week is that I finally finished Walter Isaacson's biography of Benjamin Franklin (which, by the way, I heartily recommend to anyone who is interested in Franklin or the history of the 18th century). Of all the great things that Franklin did in his life, the impact he had on the writing of the US Constitution. It's not that Franklin wrote the Constitution - in fact, he was quite opposed to some of the final decisions that went into the document. Instead it was his role in getting the 13 states to open their minds a bit and actually listen to each other and compromise when necessary that resulted in a successful Constitutional Convention.

Like the early United States, the autism community is divided into several independent 'states', each with their own opinions, desires, strengths, and weaknesses. There are many differences, but there are also many similarities. Much of the dialog today in the autism community - I include all the blogs, organizations, support groups, &c as part of this community - seems to me to focus on the differences between the various sub-communities.

Maybe the differences between the two major parties in this debate - those who advocate neurodiversity and those who advocate a cure - are irreconcilable, but it seems to me, as a parent, that we all share the goal of making sure that there is a place in society for our autistic children and that they can find that place. To that end, I believe we need to find common ground and work toward that. Only by keeping dialog and discussion open, and really listening to what others have to say, can we achieve this.

Though this blog is going on a break, I will still be online this summer and I expect you will see me writing in comments to others' blogs. Have a great summer everyone (and for those of you south of the equator, I hope your winter isn't too harsh).

From Franklin's closing address to the Constitutional Convention:
I confess that I do not entirely approve this Constitution at present; but sir, I am not sure I shall never approve it: For, having lived long, I have experienced many instances of being obliged, by better information or fuller consideration, to change opinions even on important subjects, which I once thought right, but found to be otherwise. It is therefore that, the older I grow, the more apt I am to doubt my own judgment and pay more respect to the judgment of others.

Most men, indeed as well as most sects in religion, think themselves in possession of all truth, and that wherever others differ from them, it is so far error. Steele, a Protestant, in a dedication, tells the Pope that the only difference between our two churches in their opinions of the certainty of their doctrine is, the Romish Church is infallible, and the Church of England is never in the wrong. But, though many private persons think almost as highly of their own infallibility as of that of their sect, few express it so naturally as a certain French lady, who, in a little dispute with her sister said: "I don't know how it happnes, sister, but I meet with nobody but myself that is always in the right."

In these sentiments, sir, I agree to this Constitution with all its faults - if they are such - because I think a general government necessary for us.... I doubt, too, whether any other convention we can obtain may be able to make a better Constitution; for, when you assemble a number of men, to have the advantage of their joint wisdom, you inevitably assemble with those men all their prejudices, their passions, their errors of opinion, their local interests, and their selfish views. From such an assembly can a perfect production be expected?

It therefore astonishes me, sir, to find this system approaching so near to perfection as it does; and I think it will astonish our enemies, who are waiting with confidence to hear that our councils are confounded like those of the builders of Babel, and that our States are on the point of separation, only to meet hereafter for the purpose of cutting one another's throats. Thus I consent, sir, to this Constitution because I expect no better, and because I am not sure that it is not the best.

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27 June 2006

On the internet, nobody knows you're autistic

Consider the following excerpt from an autism advocacy blog:

What started the conversation was a person we know offline who has acquired a new condition over the course of the time we have known her. She has always been extreme in both her ableism and her refusal to even contemplate thinking politically about disability, more extreme than most people. Her entire identity has been tied up in the work (paid and unpaid) that she can’t do anymore. And she’s currently mired in some of the worst kinds of self-hatred because she appears to have transferred her bigotry towards disabled people (which she never acknowledged as such, and would probably be insulted by that description, but it’s true) to herself, and is busy thinking of herself as the useless burden on her family that she thinks of disabled people as in general. And she does not even have the solace of understanding disability in a broader sense than her own feelings (that she believes come out of nowhere and are therefore not things she can change), because while she is capable of thinking politically in that way, she fears it and refuses, believing it would make her miserable. There’s nothing I or anyone else can do about this, but I hope one day she’ll realize that the kind of thinking she fears would actually both be closer to reality and make her less miserable and fearful over the long run.
Was that written by a man? Or a woman? Young or old? Black or white? Autistic, or not?

In my line of work, I spend a lot of time on the phone and on e-mail. It is safe to say that I've never met, and will likely never meet, as many as half the people I interact with in the course of a day, week, month. Occasionally, however, I do meet face to face someone I've known virtually for a long time. Without fail, my thoughts of what they will be like are completely wrong. (Imagine your favorite radio DJ, then look up their picture online: you'll see what I mean.)

I imagine the same is true of my friends and acquaintances on the web. In the cases where I have actually met some of these folks, it has definitely been true. Unfortunately, the norm in our society is to allow a person's physical appearance and behavior affect our impressions of that person. In the case of autism, especially what is commonly - though mistakenly - referred to as 'low-functioning', this is especially problematic.

The beauty of the internet is that your physical appearance doesn't matter. Your method of communication doesn't matter (granted, this is mainly because everyone communicates the same way online). People accept you - or not - for what you say, for who you are. Not what they think you should be capable of because of how you look or sound. We can only hope the offline world catches up.

BTW, the excerpt above comes from the Ballastexistenz blog. For an example of someone caught in the act of judging by appearances, check out Kev Leitch's post If Someone's Not Broke, Don't Fix Them.

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23 June 2006

New accessible gadgets

This post doesn't really have anything to do with autism, but the emphasis on making these gadgets accessible to those in wheel-chairs caught my eye. Both of these are from the Wired magazine Gear Factor page today.

Wheelchair accessible gym machine: Designer Ryan Eder has designed the Freemotion Access, a strength-training machine not too unlike those at most public gyms, but with modifications that make it accessible to wheelchair-bound and able-bodies patrons, letting everyone get a workout.

Car for disabled drivers: The electric mini-car, designed in Hungary, has no front seat; a hatchback opens, allowing the driver to roll his/her wheelchair into driving position. The car is controlled by joystick but tops out at around 25 mph....

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20 June 2006

"Men must attend IEP meetings"

"Men must attend IEP meetings."

This advice comes from Charles Fox at the Special Education Law Blog in a Father's Day post discussing the role of fathers in the advocacy process. A short excerpt:

Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that "men must attend meetings." [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.

What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother or even male co-worker or friend comes to a meeting or mediation.
His list of 16 basic principles of advocacy is well worth reading, printing out, and keeping in IEP file to help you prepare each time you must go through the process.

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18 June 2006

Developmental issues and the assembly line mentality of modern education

Every day, it seems, I come across a new autism resource. (New in the sense that I haven't seen it, not necessarily 'new' new.) I recently found Hidden Recovery, "A parent's experience with High-Functioning Autism. Diagnosed at 2 with PDD-NOS, and recovered by kindergarten." I've not had a chance to read through the entire site yet, but have come across some interesting things. (I know that some will be put off by the use of the "R" word, but if you can get past that there is some good insight and lessons from past experience that all autism parents can make use of.)

One statement from the home page caught my eye (emphasis mine):

They are unaware of the fact that this is THE NEW GENERATION of typical peers – 33% of the kids on average in a classroom in America have some developmental issue. It is now typical to have all sorts of issues in these classrooms, identified or not.
Thirty three percent have development issues. What exactly does this mean? Is this a reflection on the human gene pool, are things just going to hell? I don't think so.

I need to do some more research on this, and anything readers can point me to would be highly appreciated: It seems to me that the problem isn't that the kids are developing any differently in general, but that our (by this I mean "society's") expectations for what kids should do, and be able to do, at certain milestones is changing.

For instance, to graduate high school kids are expected to have a certain level of knowledge. At least that's how it used to be. More recently, to graduate high school kids are required to successfully complete a certain number of required and elective courses. (This doesn't necessarily equate to knowledge of those subjects.) College entrance tests such as SAT or ACT kind of measure the knowledge, but are not required for high school graduation.

More recently still, the use of standardized testing has become more prevalent. I think I could go with a test for getting a high school diploma. The problem comes in when you start having these tests at more and more of the intermediate grades. As if every child actually develops along the same timeline!?! As it always seems to, it comes down to the bottom line - $$$$.

Education in the US today (in general) is treated as an assembly line: You've got the raw materials (students), the plant (schools), the assembly line workers and supervisors (teachers and administrators), and of course the managers (school board and other government). The line workers and supervisors are interested in producing the highest quality product they can while managers expect maximum productivity at maximum efficiency. The only way to prove you are doing this is to have metrics at the end of a production period that you can look at and use to adjust for the next production period, and the shorter the production period the more quickly you can adjust for problems.

Obviously - at least to me - this isn't a reasonable way to approach the education of the world's future, autistic or not.

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13 June 2006

Autism and the DSM (part 2)

I concluded my last post with this question:

If I think that autism should be in the DSM, am I not admitting that there is something ‘wrong’ with my child?
The answer is, as so many people have helped me figure out, a resounding NO.

Though autism is, as several folks have pointed out, a neurological condition as opposed to a mental illness, inclusion of autism in the DSM has provided a means of making the public aware of autism. It has also served as the basis for parents to get needed services and accomodation from local school districts and communities.
("Wait a minute," I hear some saying. "If there is nothing wrong with your autistic child, why does he need 'services and accomodation.'"

The short answer is that it is 'society' that needs to be 'cured.' Cured of its misconceptions and stereotypes. Cured of its very short-sighted, narrow-minded approach to what it 'normal' and 'good.' When that happens, I won't have to fight for the things my child should already be getting. (OK, that wasn't so short.) And while this is true of society in general, it is especially manifested in how education is approached here in the US. But that is a whole 'nother rant that I'll defer until later.)
Unfortunately, because the DSM is a manual that describes disorders - bad things - it has also served to encourage and reinforce the notion among the un-informed public that autism is bad and that autistics need to be fixed.

It also gives professionals justification to 'kill' autistics in the hope that they can be replaced with a normal person, as related by ballastexistenz, an adult autistic:
In 1996, I was living in an institution in which a doctor explicitly told me that he wanted to kill the person I was and replace me with someone else, and that he was going to, psychologically, do exactly that to me.
For now, we need to keep autism in the DSM, because it serves as the way for autism parents to help their children get the services they need to succeed in the world. Every parent of an autistic child who is working with (or, unfortunately, against) their local community to raise awareness is part of the "grass-roots" effort to raise awareness of what autism is and isn't and what our children are capable of achieving.

At the same time, we need to continue to advocate at the highest levels, to lay the groundwork necessary for the grass-roots work to take hold. As more and more individuals become familiar and aware, it will be easier to implement change from the top down.

Eventually, word will get out that there is nothing 'wrong' with our kids and we won't need to have autism in the DSM. I hope this day comes sooner rather than later.

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08 June 2006

Autism and the DSM (part 1)

In my post Who decides what’s autistic, anyway? I posed the question of how, if at all, the diagnostic criteria for autism should be modified in the next edition of the Diagnostic and Statistical Manual of Mental Disorders, commonly referred to as the DSM. This made the implicit assumption that autism should be defined in the DSM at all. But is that a valid assumption?

Every now and then, like in MOM-NOS’ post that inspired my post on prevention and cure or some comments to that post, homosexuality is used as an analogy to autism as a way to discuss how people and society’s views can change toward those who are different from the cultural norm. In fact, homosexuality was included in the first two editions of the DSM and was only removed in 1973.

One of the basic arguments that anti-cure autism advocates have made – me included – goes along the lines of, “There is nothing to cure, that’s just the way they are.” Is that the same as saying, “Autism is not a disorder, it is just a different way of ‘being’, like being shy, an extroverted socialite, or (sticking to the analogy) gay?” And if so, is that the same as saying, “Autism shouldn’t be in the DSM.”

Should autism – or Pervasive Development Disorders in general – be included in the DSM?

Before we answer, it is important that we consider the role an autism diagnosis plays in the life of an autistic child. A diagnosis of autism is the basis for much, if not all, of the educational and other services that autistic children receive from the government and education system. (At least that is the case in the US.) If autism is not a disorder described in the DSM, and therefore not recognized as requiring special accomodations such as an IEP, what does this mean?

Granted, even without a diagnosis it would be obvious that our autistic kids are different and will still require and receive some special services; NT kids are identified by local school personnel all the time for speech related issues early in elementary school and given the appropriate speech therapy, all without the formal process of IEPs. But most autistic kids need a bit more support and services than a local school is able (or willing) to accommodate on their own.

If we argue that our autistic kids don’t need to be “cured,” how can we justify that our autistic kids should receive special treatment and services above and beyond what the other kids who also don’t need to be cured of anything receive. [My personal response to that is that every child should have an IEP, but I know that is not going to happen for many ($$$$) reasons.] Especially when you consider that in many places it is difficult enough getting the needed services when there is a diagnosis.

So, should autism stay in the DSM? I say, “Yes.” But this, in turn, raises some more questions:

If I think that autism should be in the DSM, am I not admitting that there is something ‘wrong’ with my child?

And if I’m saying that, how can argue against a cure?
To be continued….

tagged as: Autism, Asperger's Syndrome, IEP, Parenting, DSM

06 June 2006

A parent's thoughts on cure and prevention of autism

In any discussion about autism, especially with parents of newly diagnosed children or friends/family who have no direct experience with autism, the subjects of cure and prevention will inevitably come up. "Can you fix him?" "What went wrong?" "I'm trying to get pregnant, is there anything I can do to make sure my kid isn't autistic?"

The answers to these questions depend quite a bit on whom you ask, and also when you ask them. In one of my early posts to this blog, I wrote the following:

"We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?"

Pose this question to a group of parents of children just diagnosed with autism, and chances are you would get a very quick, passionate, and nearly unanimous response of YES!!! Ask this question to those parents of older children, though, and the responses would likely be more hesitant, not quite as passionate, and definitely not unanimous.
In (R)evolutionary parenting, MOM-NOS describes how her feelings have changed toward her son's autism over time:
When Bud was initially diagnosed, I viewed autism as "other" - an interloper, a roadblock, an obstacle. I saw it as something to take care of and to get rid of as quickly and as efficiently as possible.

Later, I began to see autism as a part of Bud (and not apart from him). I saw it as a small part, but a significant part.

But as I came to understand Bud better, I learned that his autism is not...one small part of him. It infuses every part of him and it shapes who he is in this world. It makes some things terribly difficult for him. It makes other things laughably easy.
The other key thing we must consider as our kids grow older is that they will develop opinions of their own about their 'condition' in life. If you were to present me today with the cure question I asked above, I would be unable to answer. Not because I'm undecided about what I would do, but because I think at this point (15 years old) it is no longer my decision alone to make. Sure, as a parent I would expect to have some input, and would do my best to make sure my son understood the implications of both options.

If you had asked me the question 13 years ago, I would have had to decide. Not knowing then what I know now, I have no doubt that I would have quickly and unreservedly said, "Yes." But if I had known then what I know now, what would my answer have been?

pregnant pause

In many ways, asking the cure question at the initial diagnosis (assuming it was early enough) is the same as 'preventing' autism in the child; if the autism is removed before it has a chance to "infuse every part of him and it shapes who he is in this world," then the autism will have been prevented from being a defining part of the child. Is prevention a 'bad' thing? Again, it depends on whom you ask.

If you are talking about pre-natal testing, the discussion will range from "with this test you can determine if your child will be autistic or not and decide whether or not you want to have him" to "this is the first step to eugenics and wiping out of autistics." I'm choosing not to engage in this discussion in this post, though I'm sure it will come up in the comments and in later posts.

If, however, you are talking about prevention through a "shot" like I mentioned above (I know, I know, this is not the way it would probably work - please bear with me), how would you answer the question. What factors would you consider?

I can't help but go back to the questions in my mind that prompted me to write To hear or not to hear. What do I want life for my son to be like? What options do I want him to have? What will he think of my decision when he gets old enough to understand what I have done?

If I had a child who was born deaf and was told by the doctors that through surgery my child would be able to hear, but the longer I waited the harder it would be for my child to transition from a non-hearing world to a hearing world, I must admit that I wouldn't hesitate any longer than it took me to figure out how to pay for it. Why should I think any differently about autism?

By saying I would prevent autism at an early age if I could, I'm not saying that I don't value my child as he is now. I can't imagine these past 15 years without him, and it is safe to say that my career path, my wife's career path, and my other son's life would be completely different had we not lived in Autismland all this time. But at the same time, I have no doubt that life without autism would have been just as enjoyable and rewarding, yet filled with the more 'typical' challenges that parents of teenage boys experience.

Parenting is hard, mainly because it is a long-term investment of time and effort (and money, of course) with a high degree of uncertainty about the final outcome. The things I do today will have impacts years from now that I could never imagine. I see one of main roles as a parent as the one who sets the path along which my children will begin their journey in life. Along with that, it is my job to help them understand the path they are on, the future paths that lie before them, and an understanding of how to navigate the world.

Or, as MOM-NOS says in (R)evolutionary parenting:
I will try to help him build the foundations that will serve him best [as an autistic person in a largely neurotypical world] - foundations of relationship, flexible thinking, broadband communication, mindfulness. And then, ultimately, I will need to step aside and let him use the things he's learned.

Or not use them.

My goal, I suppose, is to help Bud have options, to let him know that his life need not be driven by fear and limitations, nor by the prejudices of small-minded people.
Parenting is hard, and every parent approaches the challenge in different ways. I don't like the way some people parent their children, and I am in awe at how others make it look so easy. This applies to both "typical" parents and autism parents. But it is not my place, nor anyone else's I believe, to tell another parent how to raise their children. (And no, I don't believe anyone else should tell me how to be a parent either.)

In the end, parents answer only to themselves (obvious legal/moral exceptions aside) and, when they get older, their children. I'll leave it to them to judge.

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05 June 2006

After all, autistic kids are still just kids

If there is any theme to my beliefs and thoughts about raising an autistic child, it is this: Raising an autistic child is just like raising any other child, only different. As the parent of two teen-age boys, one autistic and one not, I know the challenges and joys of raising both.

In the Columbus Dispatch article Autistic kids fall victim to parents who run amok, columnist Deborah Kendrick addresses this very theme (emphasis added):

Anyone who has been a parent has at least one terrible moment where caring for a child seemed unbearable…. None of my children is autistic. They did, however, have special needs, because all children have special needs.

One mom in Autism Every Day states pathetically that her child will never marry. "How do you know that?" is what my heart is screaming at her….

I’ve heard parents of deaf kids, blind kids, kids with Down syndrome and other disabilities make the same kinds of pronouncements: My child will never (fill in the blank). To all of them I say no human can predict what another human will accomplish.
tagged as: Autism, Asperger's Syndrome, Parenting

04 June 2006

Questions about a cure's effect on people

When I checked my referer logs on Friday, I saw that quite a few people found their way to this blog looking for discussion about how the new movie X-Men III: The Last Stand might relate to autism. Most people found me through various search terms, but my post More thoughts on autism inspired by the X-Men trilogy was also linked to from “X-Men” and Disability Rights at specialchildren.about.com. (That article also points to A ‘Last Stand’ against cure, a bit more academic take on the issue).

I finally saw the movie yesterday, and as an X-Men fan I wasn’t disappointed. I don’t want to get into any specifics from the movie yet; I’d hate to spoil anything for people who are planning to see it. But I did come away from it with a few questions about autism cures that I hadn’t really thought of before. (These questions all assume that a cure exists.)

  • How many autistics would take the cure? (Though most writing by autistics that I’ve come across seems to be anti-cure, I can’t imagine that there are not pro-cure autistics out there.)
  • How would autistics who choose to be cured be viewed/treated by autistics who choose not to be cured?
  • How would a pro-cure parent of an autistic child feel about their child who chose not to be cured?
  • How would an anti-cure parent of an autistic child feel about their child who chose to be cured?
  • How do autistics feel about their pro- / anti- cure parents?
Unlike autism, which typically presents very early in life, in the world of the X-Men the “change” from human to mutant occurs at puberty, after the child has had a chance to experience what a “normal” life is. Subsequently, these mutants have an experiential basis for making a personal decision to be ‘cured’ or not that it seems to me autistics don’t have. Just a thought.

tagged as: Autism, Asperger's Syndrome, X-Men

02 June 2006

So what? [Redux]

In my post So what?, I referred to the autism mothers shown in the video Autism Every Day as selfish and whiny. To any autism parents who took my comments as personal insults, please allow me to apologize. Believe me, I know that there are times when you can’t help complain, because there is often a lot to complain about. The many autism parents I’ve met online through this blog and other forums are doing their best to get through the hard times and enjoy the good. It was not my intent to trivialize or dismiss what we as autism parents experience, yes every day.

What really irritated me about the video was the depiction of these autism mothers as selfish and whiny. But I guess I shouldn’t be too surprised at the content and message of the video, considering the source – Autism Speaks. The following is excerpted from the Founder’s Message (emphasis added):

  • In 2004, our grandson was diagnosed with autism. Helpless, we watched him slip away into the cruel embrace of this disorder…. We launched Autism Speaks in February 2005 to help find a cure for autism by raising the funds that will facilitate and quicken the pace of research, to raise public awareness of autism, and to give hope to all those who suffer from this disorder.
  • Few disorders are as devastating to a child and his or her family. Instead of Little League games and sleepovers, most people with autism will face lifelong supervision and care, exhausting a family's financial and emotional resources.
  • The pace is quickening, and, God willing, we won't stop until we have conquered autism—one child, one voice at a time.
And their mission:
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Though I don’t necessarily believe in the possibility (or need) for a cure of autism, I don’t begrudge those who seek a cure. But the mission stated above, all of the work being done and money being spent by Autism Speaks and similar organizations, seems to leave out a very important piece of life with autism – namely, living with autism. The mission, as stated, is basically saying, “We’ll have this problem figured out soon, in the mean time just hang tight.”

The strange thing, though, is that the Autism Speaks site is filled with information such as "How to cope" and "How to grow." Why didn't this show up in the video?

As with many of my posts, I started on one thread, ended up on another (with yet another thread - cure and prevention - lurking just below the surface), and found myself not really knowing what my point is (if, indeed, there is one). I think I am still suffering from Ack! and Thbbbt!, trying to get all of this information sorted and figured out. Though intellectually I know that is not really possible, I still hold out hope.

tagged as: Autism, Asperger's Syndrome, Autism Speaks

30 May 2006

To hear, or not to hear - Is that the question?

In the world of autism the question, "If there were a cure available for you or your child, would you use it?" is pretty much rhetorical, food for thought. As such, discussions are more theoretical than practical. In the world of the deaf and hard of hearing, however, cochlear implants mean answering this question has much more practical implications.

At first thought for most 'hearing' people (here we go with labels and descriptors again), a technology that would allow or restore hearing seems to be a no-brainer. I think that most hearing parents of deaf children would jump at the chance to make their kids "not deaf." (For now, I'm going to ignore the fact that the results of cochlear implants vary person to person.) As those kids get older, though, the question becomes a bit more complicated, as the kids (and then adults) establish their identities in the context of the deaf culture. (For a similar discussion of the impact of age on the decision to apply/impose a cure, see my earlier post Thoughts on curing autism.

There are many similarities in the arguments on both sides, and I think that the debate in the deaf community may offer some insights into the same question for autism. For example, the following description of different perspectives could very easily be applied to the question of curing autism:

The (deaf community's) perception is that there's nothing wrong. There's nothing that needs to be fixed. Our perception is, there is something that needs to be fixed. So from the very foundation, we're diverging in our perspectives.
A Google search on Cochlear Implant controversy brings back quite a few listings, here are some examples of comments in the debate:
  • The controversy over cochlear implants in children has many sides. For some in the deaf community, CIs are an affront to their culture, which as they view it, is a minority threatened by the hearing majority.

  • The technology seems like a medical miracle to many hearing parents and doctors who see the technology as a cure for deafness. But the cochlear implant has long been the center of a stormy debate. Some deaf advocates worry that the view of deafness as an illness to be cured marginalizes the deaf and stigmatizes those who can't --or don't wish to--use an implant.

  • Most doctors schedule the procedure as soon as possible in young children to increase their odds of acquiring oral language skills. But some deaf advocates worry that hearing parents may wind up making a choice their deaf children would not have made for themselves.

  • That view of hearing loss as pathological is at the heart of the cochlear controversy. On the extreme end, some deaf advocates who communicate only via sign language and shun any attempt to learn oral language, view the device as a threat to their unique, sign-language-based culture. But even to those with far more moderate views, the cochlear implant is a symbol of the hearing world's desire to "fix" deaf people.

  • The conflict concerning cochlear implants is centered around the definition of disability. If deafness is defined as a disability, in the eyes of many, it is something to be altered and repaired. According to the medical view, deafness is a disability. On the other hand, if deafness is a cultural identity, it should be allowed to thrive and, given the emphasis on diversity in today's society, should be readily accepted and supported. This opinion is based on the cultural view of deafness. Therefore, although the controversy over cochlear implantation seems simple, it is based on the very complicated and often unstated implications of the true meaning of deafness.

  • Altering a deaf child with surgery at an early age would only cost money once. In contrast, providing interpreting, note taking, and assistive technology would not only continually cost society money; these practices would also create inconveniences for others because of the language barrier.

  • Those who oppose the use of cochlear implants do so for several reasons. These people challenge the supporters of cochlear implants by asking questions such as, "What is normal?" and "Do the quality and quantity of the benefits outweigh the risks involved?".

  • Parents, confronting a new diagnosis of deafness, react with a wide spectrum of emotions including denial, guilt, the need to blame someone, and the need to find a miracle. Doctors and parents tend to see the child as missing something and view the deafness as a disability that must be fixed to make the child "normal" or whole again. This attitude can have serious social and emotional implications. A child who is told she is "broken" and needs to be fixed will forever see herself as less of a person because of her deafness.

  • The problem is that 90% of deaf children are born to hearing parents. In many cases, these hearing parents may have never met a deaf adult. It is common for parents to be introduced to a number of audiologists and speech therapists when their child is first diagnosed with a hearing loss but to never be taken to meet a deaf adult so that they may receive the other perspective. They are told that something is wrong with their child. It may never be mentioned that deafness is considered to be a cultural identity for some people and that implants are seen as unnecessary. The parents of the deaf child, wanting only what is best for their child, will want to make sure that the child has the opportunity to succeed. If all they have been told is that the child will need to speak to function and that there is a procedure that can provide this, of course they would want the implant. To the parents, it is seen as the instrument of success.

  • Et cetera.
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28 May 2006

Real concerns from "Autism Every Day"

While I didn't care much for the Autism Speaks produced video Autism Every Day and its representation of only the negative aspect of raising autistic children, many of the concerns raised by the mothers in the video (who were unfortunately depicted as selfish and whiny) are valid. The two that really come to mind are elopement and fear for the future.

A common every day fear is that your autistic child will run or wander off, with potentially harmful and sometimes fatal results. This was in the news late last week, when a 5 year old autistic boy was found drowned in a retention pond. What made this particular story even worse for those involved was that the boy was in care of relatives (an aunt). But this problem is not confined to autistic children: the same township in the story above recently experienced the death of a two year old in a retention pond as well.

Since most people don't live near bodies of water (though swimming pools are becoming more and more common), the refrain "I'm afraid he's just going to run out in traffic one day and be killed" is one that most parents of autistics can relate to. Again, this is a fear not confined to autistic children, but is also a concern for parents of young children.

I have written a little bit about how you can help prepare your community, especially law enforcement, prepare for dealing with these types of situations at Autism for Parents, though there is a lot more that needs to be said. To be honest, though, I'm not sure what parents can do to stop this from happening (beyond a complete lockdown of their kids). Any thoughts?

Another common anxiety for parents of autistic children is, "I can't ever die, what would happen to my child?" While none of us look forward to the day that we are no longer around to help our children in person, there are many things that parents can do to ensure their children are taken care of in the future. One of my goals in setting up Autism for Parents was to help address this types of issues, and I recently posted some thoughts specifically addressing this question.

There is a lot of debate about whether or not autism should be cured or if it is a valid state of being. No matter your opinion on that, though, I think it is important for all parents of autistic children to not just identify the challenges/differences of raising and autistic child, but to take the appropriate action to help that child succeed in life.

25 May 2006

So what?


That pretty much sums up my feelings over the past couple of weeks about autism news. I have the feeling this post is going to go long and wide, so consider yourself forewarned....

At last week's Senate confirmation hearings for President Bush's nominee for head of the CIA, GEN Michael Hayden was asked to comment on the value of 'targeted intelligence,' the process of gathering intelligence explicity supports a desired outcome. (If I remember correctly, it was asked by a Democratic Senator doing a bit of sneaky Bush-bashing.) GEN Hayden replied along the following lines - this is a paraphrase, I could not find an actual transcript:

I've got two great kids, teenagers. But if I wanted, I could put together a dossier on them that contained all the bad things they've ever done. This would be accurate, but would not tell the whole story. You would think these were the most rotten, evil kids on the planet. If all you are looking for, or expecting to see, is one aspect of a situation, then that is what you will get.
This exchange from the hearings kept popping into my mind as I read the many descriptions of the Autism Speaks video, Autism Every Day. I finally got around to watching that video today. Ack!! Thbbbt!!

This video is nothing if not targeted intelligence, the Autism Speaks equivalent of the 2003 State of the Union address and Secretary Powell's briefing to the UN on Iraq's weapons of mass destruction program. What is their goal? Well..., war of course. War on autism. But is this also a war on autistics? It's kind of hard to tell the difference.

About half way through the video, which to that point basically consists of a bunch autism parents - I should say autism MOTHERS - whining about how hard life is with autistic kids, I couldn't help think, "So what? Parenting is hard." In fact, I was going to write a bit about that, but Kev beat me to it:
No one is claiming parenting children is easy. It is not. No one is claiming that parenting children with special needs is easy. Its not. But at some point we have to say to ourselves – yeah OK, this is hard. We have it harder than parents of NT kids…..so what?

Moving past and getting on is as easy or as hard as you want to make it. I don’t want pity. I don’t want sympathy. What I want is understanding. Genuine comprehension. Cynically manipulative pieces like ‘Autism Every Day’ will not aid comprehension. It does not show reality. It shows the bad things. A lot of the bad things in this piece seemed induced either purposefully or by ignorance. I am not saying bad things don’t happen, I am saying they are far from the whole story.

Deja vu, anyone? (See the quote from GEN Hayden above.)

I was flabbergasted (to say the least) when one of the mothers in the video said that, except for the fact that she also had a non-autistic daughter, she would would have driven off the George Washington Bridge so her autistic daughter "wouldn't have to go to that school." Thbbbt!!! With the autistic daughter (8 or 9 years old) in the room with her. Ack! And then the non-autistic daughter said, "I wish I had a non-autistic sister." ...!!!... (words escape me here) Not I wish my sister weren't autistic, but I wish I had a different sister.

This of course leads into the story of the death of a 3 year old autistic girl at the hands of her mother. Much of the press, and most of the comments from the family and friends, seems to be along the lines of, "Poor woman, she was the mother of an autistic child and she just snapped. Please pray for her. It wasn't her fault."

Much of the whining (sorry, that's how it came across to this 13 year veteran of autism parenting) in the video was focused on how the autism negatively impacted the lives of the parents. "Sorry, I'd love to go get bagels with you, but I've got to go deal with my autistic child." "I couldn't keep the job I wanted." "This wasn't my choice. I'm not a therapist, I got drafted. I'm a parent of an autistic child."

Let me tell you a story.

A couple of days ago some friends watched their 6-year old son die, heard his last breath as he succumbed to terminal illness. About 3 weeks ago, their son's body began rejecting food from the tube. Nearly 6 months before that, he became unable to eat food (hence, the tube). For the past two years, he has been unable to move. An unbelievable amount of love and caring. Did they miss the things they could not do? Undoubtedly. Did it make their life hard? Yep. Did they whine about how miserable they were because of their sick child? Not a chance. Did they consider throwing him off a bridge? Puh-lease!

Life is hard. Parenting is hard. So what?

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12 May 2006

Will the "real" Steven please come out?

The whole article, Autism: The search for Steven, is only available by subscription to New Scientist (which I don't have), but the article preview, the first paragraph actually, gives an idea of the tone the article likely takes:

Will it ever be possible to "bring out" the real person in an autistic child? Perhaps not, but Vilayanur Ramachandran and Lindsay Oberman think they have compelling evidence to explain autism's bizarre symptoms.
More disturbing to me is the quote from one of the physician's patients (actually the patient's mother):
I KNOW Steven is trapped in there somewhere. If only you could find a way to tell our son how dearly we love him, perhaps you could bring him out, Dr Ramachandran.
I wish I could reach out to that mother and tell her that her son is right there in front of her, that every day she lets go by without getting to know her son is a day she will regret later.

If anyone reading this has a subscription or has read the entire article, I'd love to ear your thoughts.

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09 May 2006

AutismPodcast - Autism Diva

The latest episode (#18) of the AutismPodcast features an interview with Autism Diva.

Just thought you'd like to know.

08 May 2006

Who decides what's autistic, anyway?

Recent stories about potential bias on the part of the contributors to the DSM-IV got me thinking about the DSM, how it is developed, and who develops it. If you aren't yet aware, it is the DSM IV that contains the diagnostic criteria for the Pervasive Development Disorders (PDD), including autism.

The DSM is published by the American Psychiatric Association and dates back to 1952. The next revision is expected to be published in 2011, with working groups to be formed in the not too distant future to start working on it.

With all the attention, discussion, controversy, and activism devoted to autism over the past several years (and which I expect will continue to grow over the next several years), I wonder what the new DSM-V will have to say about autism. Will it break ASD down into different sub-types? Will it take into account physical as well as neurological questions? Will it basically stay the same?

If you could provide input to the DSM-V authors on the topic of autism, what would it be?

As excerpted on wikipedia, here is the DSM definition (section 299.00) for autism:

  1. A total of six (or more) items from (1), (2) and (3), with at least two from (1), and one each from (2) and (3):
    1. qualitative impairment in social interaction, as manifested by at least two of the following:
      1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
      2. failure to develop peer relationships appropriate to developmental level
      3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
      4. lack of social or emotional reciprocity

    2. qualitative impairments in communication as manifested by at least one of the following:
      1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
      2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
      3. stereotyped and repetitive use of language or idiosyncratic language
      4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

    3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
      1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      2. apparently inflexible adherence to specific, nonfunctional routines or rituals
      3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
      4. persistent preoccupation with parts of objects

  2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
  3. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder
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07 May 2006

Time Magazine: New Insights into the Hidden World of Autism

On news stands tomorrow (8 May), Time Magazine's cover story (set of stories, really) looks at autism in some detail. Here is an excerpt from the main story, "Inside the Autistic Mind":

MORE THAN 60 YEARS AFTER AUTISM WAS first described by American psychiatrist Leo Kanner, there are still more questions than answers about this complex disorder.... But slowly, steadily, many myths about autism are falling away, as scientists get a better picture of what's going on in the bodies and brains of people with autism and as more of those who are profoundly affected are able to give voice to their experience. Among the surprises:
  • Autism is almost certainly, like cancer, many diseases with many distinct causes. It's well known that there's a wide range in the severity of symptoms--from profound disability to milder forms like Asperger syndrome, in which intellectual ability is generally high but social awareness is low. Indeed, doctors now prefer the term Autistic Spectrum Disorders (ASD). But scientists suspect there are also distinct subtypes, including an early-onset type and a regressive type that can strike as late as age 2.
  • Once thought to be mainly a disease of the cerebellum--a region in the back of the brain that integrates sensory and motor activity, autism is increasingly seen as a pervasive problem with the way the brain is wired. The distribution of white matter, the nerve fibers that link diverse parts of the brain, is abnormal, but it's not clear how much is the cause and how much the result of autism.
  • The immune system may play a critical role in the development of at least some types of autism. This suggests some new avenues of prevention and treatment.
  • Many classic symptoms of autism--spinning, head banging, endlessly repeating phrases--appear to be coping mechanisms rather than hard-wired behaviors. Other classic symptoms--a lack of emotion, an inability to love--can now be largely dismissed as artifacts of impaired communication. The same may be true of the supposedly high incidence of mental retardation.
  • The world of autism therapy continues to be bombarded by cure-of-the-day fads. But therapists are beginning to sort out the best ways to intervene. And while autism is generally a lifelong struggle, there are some reported cases in which kids who were identified as autistic and treated at an early age no longer exhibit symptoms.
On the topic of mercury/thimerosol:
At the Center for Children's Environmental Health and Disease Prevention at the University of California at Davis, toxicologist Isaac Pessah is studying hair, blood, urine and tissue samples from 700 families with autism. He's testing for 17 metals, traces of pesticides, opioids and other toxicants. In March Pessah caused a stir by releasing a study that showed that even the low level of mercury used in vaccines preserved with thimerosal, long a suspect in autism, can trigger irregularities in the immune-system cells--at least in the test tube. But he does not regard thimerosal (which has been removed from routine childhood vaccines) as anything like a smoking gun. "There's probably no one trigger that's causing autism from the environmental side," says Pessah, "and there's no one gene that's causing it."
Other stories in the set include:
The tale of two schools, the Alpine Learning Group in Paramus, NJ and Celebrate the Children in Stanhope, NJ, that apply two of the most common approaches to working with kids with autistic spectrum disorders, ABA and Floortime, respectively.

The Most Difficult Decision of My Life: A first-person column by TIME's Amy Lennard Goehner on her son's experience at a very unusual boarding school for autistic kids, called Boston Higashi.
I haven't had a chance to read all of it completely, but it looks like a lot of good information. It also looks like a lot of good controversy for discussion.

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14 April 2006

Avoiding unfortunate situations: Autism and law enforcement

Charles Fox, on his Special Education Law Blog, has a link to and discussion of the report Avoiding Unfortunate Situations. From the report's introduction:

Law enforcement agencies in the 21st Century are embracing community policing and better education for their increasingly diverse workforce. There is also a growing interest in the global autism community to bring public awareness of autism and the people it affects to law enforcement professionals. As a parent of a young man with autism and reporter/researcher on this topic since 1991, I hope to bring you useful information about autism and the law enforcement community. Sharing critical autism recognition and response information with our law enforcement, first response, criminal justice and educational communities is my mission. The goal? Better community experiences for everyone.

I'm telling the world about our stories in the best way I can: through my books and articles, through train-the-trainer workshops for law enforcement, first responders, and educators, and through the media. Autism awareness and education for law enforcement, emergency response and criminal justice professionals is a personal, and now, professional part of my life. Public awareness--telling others about our everyday lives as families affected by autism--is a key element of my personal and professional advocacy. Positive outcomes for our loved ones can be the result when we take the time to educate others about autism spectrum disorders. I want to tell your stories, too. Let me know what they are.
A couple of key discussion points that Charles raises:
One of the truly remarkable statistics referenced in this report is that"[p]ersons with autism and other developmental disabilities are estimated to have up to seven times more contacts with law enforcement agencies during their lifetimes (Office of Special Education and Rehabilitative Services News In Print, Winter, 1993)." In view of the likelihood of contact between law enforcement and persons with disabilities, these guidelines should be considered in developing IEP goals, BIPs and transition plan goals.

The level of candor of this report is refreshing. It openly states in the training section for police that "[a]utism issues remain un-addressed in standard police officer training programs." ... Moreover, one area of inquiry should be to your local police, fire and paramedics as to their level of autism training and awareness.
The main part of the report includes sections on What Families Can Do To Reduce Police Interactions and Information for Persons with Autism. The site also includes a Law Enforcement Handout.

I've not had a chance to read through it completely, but have added it to my (all too long) reading list. I'll also be looking at it as a possible addition to Autism for Parents. Let me know what you think.

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12 April 2006

New "Blogs by Parents" listings on "Autism for Parents"

Slowly but surely, I'm building up the resources on Autism for Parents. The latest additions are the following blogs by parents of autistic children:

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Some thoughts on denial and an autism diagnosis (or: The end of the world as we know it)

When a parent experiences denial on receiving an autism diagnosis for their kid, I think it is important for them to understand what exactly they are in denial about. At first thought, it would seem obvious that they are in denial about their child having a "devastating disorder" (since I believe this is how most - not all - parents initially conceptualize autism). The proverbial "end of the world."

But is this really what they are in denial about? Or are these parents in denial about what the diagnosis means to them, to their expectations of the future and what it means to have kids? Or, in keeping with the theme, the "end of the world as they know it."

I recently came upon a couple of essays that capture this better than I ever could have hoped to. (As you read through these two essays - and I strongly encourage you to read each in their entirety - keep in mind that both were originally written more than 10 years ago. We've come so far, but still have a long way to go.)

From the essay Cure, Recovery, Prevention of Autism? by Phil Schwarz:

I think that most people who seek a "cure" for their loved ones' autism do so with the best of intentions: they see their loved ones having difficulty or inability to function, and want to help them overcome those difficulties or inabilities.

The statement "I wish my child were not autistic" implies, at least to me as a parent, and also as an inhabitant of the borderlands of autism myself, that the parent making the statement seeks a change in the inner essence of who the child is.

Would we feel as comfortable with the following statement, about equally fundamental stuff of which the self is made: "I wish my child were not female" ?

What is really going on with that latter statement? Being female is not considered, at least in the cultures that frown upon that statement, a disability, overtly at least. So why would a parent harbor such a feeling, even covertly?

I think because they had, and still have, unmet expectations. Perhaps a boy would be easier to relate to, to bond with -- especially for a father. Perhaps the family has no boys. Perhaps the parents really really wanted a boy....

Now go back to the statement "I wish my child were not autistic".

There is an incredible amount of devaluation based on low societal expectations about what autistic people can accomplish. Autism itself is still considered shameful by far too many. (especially parents, imo. -brett)

It is very much more difficult for most parents to lay to rest unmet expectations about neurologic typicality, and dreams based upon those expectations.
And from the essay Don't Mourn for Us by Jim Sinclair:
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective.
It's the end of the world as we know it, and I feel fine. How about you.

tagged as: , , , , ,

06 April 2006

Autism and the 5 stages of grief

For many families, a diagnosis of autism in a child brings about a profound sense of loss. Since most people don't actively educate themselves about autism before the diagnosis - let's face it, no one thinks it can happen to them - most of what they know comes from what they may see, hear, or read in the media. Unfortunately, the vast majority of stories about autism in the media are about the 'devastation' of autism, of how kids are 'lost' in a strange and terrible world away from society.

As a result, I think that many people who find themselves facing an unexpected diagnosis slip into the 5 stages of grief. The link provides some details on the 5 stages, including some discussion of why some think they are not valid, but here are the 5 stages themselves:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance
These are the stages, as I understand it, that a person will go through if left on their own, if they don't receive any support or gain any understanding beyond the feeling of loss. One of my goals with Autism for Parents is to present an alternative to these 'default' stages that treat an autism diagnosis as a devastating loss with a series of steps that parents can take to fully understand their situation and go beyond mere acceptance.

Here are the steps I've come up with.
  • Denial - unfortunately, unavoidable
  • Confusion - again, unavoidable
  • Understanding - the process a parent takes to understand the situation. In this step, will answer the questions that come from the confusion stage.
  • Plan - based on understanding gained in previous step, make a plan for your life ahead (something parents do with all kids)
  • Act - live life to the fullest, adjusting the plan as your understanding grows.
I'm interested in any feedback to help refine the individual steps, or the overall concept itself. I'll explore each of the steps in a bit more detail in subsequent posts and will consider all comments/suggestions.

tagged as:

05 April 2006

Autism and God

I’ve written briefly about autism and religion in No wheelchairs in heaven? What about autism? Recently, I’ve been giving a bit more thought to the subject. The discussion that follows is primarily from a Christian perspective, mainly because that’s the one I’m most familiar with, but I believe the basic concepts transcend any particular faith or denomination.

One of the many things that all parents must think about is what – and how – to teach their kids about religious and spiritual matters and how important religious practice will be to the family in day-to-day life. This is no less an important matter for parents with autistic children, though the approach and expectations of parents may need to be adjusted to suit the needs of the child.

Many blogs by parents of autistic children discuss the importance of religious faith in their lives and how it helps their family find needed strength and understanding. Some of these also discuss questions of accomodation and acceptance within their church, with varying degrees of success. It is along these lines that the story of Matthew, a 10-year old autistic boy in Phoenix whose family is in a dispute with the Catholic Church over accomodations for Communion, has been told in various news stories.

A quick summary of the situation:

The Catholic Church has told the parents of a 10-year-old autistic boy that, because the child cannot consume the host, he is not receiving Communion properly. Until he does, church officials say, he cannot partake of the church's most meaningful sacrament.

According to a letter from Bishop Thomas J. Olmsted, delivered to the Lake Havasu City family on Feb. 12, the boy cannot accept Communion in the Catholic Church until he can "actually receive the Eucharist, actually take and eat."
Beyond the practices of specific denominations, or individual congregations, this situation raises the even more important question to parents: “What does God (in this case, the Catholic version) think about this boy who is unable to physically accept the Eucharist?” There are several articles and blogs that address this question from a theological standpoint, so I’m not going to go into any detail here (see the list of various news stories linked to above.) But it is a question that believers of all faiths and denominations must grapple with.

In Matthew’s story, the boy’s father has the following to say:
"I took my son to CCD (religious education) classes for two years to prepare him," said Moran, a stay-at-home father. "He deserves it."

Moran also said his son realizes that he is doing something special. When he was not allowed to go to Communion on Feb. 26, "it was terrible," said Matthew's mother. "Matt screamed and cried because he did not get his Communion."
This intrigued me on many levels. First, these are assumptions by the father on why his son was upset about being denied communion. The father assumed it was because his son was upset that his ability to accept the Eucharist would affect his relationship with God. Perhaps, though, Matthew’s reaction was based not on the content of the situation but the context: his well established routine had been violated. And we all know that (warning: gross generalization ahead) autistics don’t like their routines messed with.

Can autistic kids, in general, have true religious beliefs, true faith? Do they understand the meaning of, for instance, the death and resurrection of Jesus? Just because they can learn and participate in the rituals, does that mean they get the abstract meaning, the reading between the lines? (To be honest, this is a question I wonder about with NT kids as well.)

As parents, I think we all have an idea of what God thinks about our autistic children. I guess the question I’m asking is: What do our autistic children think about God?

tagged as: Autism, Asperger's Syndrome, Religion, God, Roman Catholic Church

04 April 2006

More thoughts on autism inspired by the X-men film trilogy

In my last post, I put down some very hasty thoughts about the upcoming film X-Men III and how its theme mirrors somewhat the question of ‘curing’ autism. The other films in the series, especially X-Men 2, offer some interesting insight as well.

For those of you not familiar with the film series, here is a short summary of the major themes:

  • X-Men: As the number of mutants in the population rapidly increases, there is fear in the human segment of the population of these mutants and their various differences and special abilities. The government (in this case, U.S.) is exploring various legislation to monitor and control these mutants. One especially powerful mutant (Magneto), who as a child was a holocaust survivor, decides to take the fight to the leaders of the world with a plan to turn them all into mutants themselves, so they would ‘understand.’ A group of ‘good-guy’ mutants – the X-Men – is determined to find a way for mutants and humans to live together peacefully. Despite society’s fear/hatred of them, the X-Men take on the task of preventing Magneto’s plan from succeeding.

  • X2 X-Men United: Fear, caused in large part by a lack of understanding of ‘mutantism,’ is resulting in more human desire to track and control mutants and their activities. One somewhat rogue military officer, who has a mutant son he unsuccessfully tried to ‘cure,’ takes it as his personal mission to wipe-out (as in kill) all mutants. The good guys (the X-men) and the bad guys (Magneto, et al) must come together to avert this attempted genocide. Along the way, the bad guys try to turn the tables and wipe out all non-mutants, with the good guys now having to intervene again on behalf of those that would destroy them. Though full of action, this movie also addresses the social aspects of ‘awareness’ and ‘acceptance’ of those that are different.

  • X-Men 3: Not yet released, the trailer for the film hints at the looming war. This summary comes from IMDB: In X-Men: The Last Stand, the final chapter in the X-Men motion picture trilogy, a "cure" for mutancy threatens to alter the course of history. For the first time, mutants have a choice: retain their uniqueness, though it isolates and alienates them, or give up their powers and become human. The opposing viewpoints of mutant leaders Charles Xavier (Stewart), who preaches tolerance, and Magneto (McKellen), who believes in the survival of the fittest, are put to the ultimate test -- triggering the war to end all wars.
There are two scenes in particular from X-Men 2 that stand out in my mind. The first is a discussion between a teen-age boy and his mother when she first discovers he is a mutant, the second is a conversation between two mutants from different sides of the good-bad divide.

One misconception about the mutants in the X-Men world and their abilities is that they are all ‘super-heroes.’ While it is true that some of the powers require a conscious effort to invoke (like the ability to control the weather or transfigure into anyone else), many of the abilities are always “on,” uncontrollable by the individual with the mutant ability (such as the eyes that shoot out a destructive beam of light unless covered by special goggles or the girl whose touch to your bare skin will slowly drain your life force). And some have a combination of the two, typically expressed as a controllable power and an uncontrollable physical appearance.

The conversation between mother and son occurs when the boy comes home unexpectedly from the boarding school he attends. The school happens to be a covert school for kids with mutant abilities; the mother thinks it is a prep-school for gifted (in the conventional sense) children. When the boy tells his mother the truth, and demonstrates his mutant ability (btw, he looks like a regular human), his mother’s reaction is to ask, “Have you ever tried to not be a mutant?” The underlying message, to me, was “You look normal, can’t you just act normal?”

The conversation between mutants comes when the good guys and bad guys are temporarily allied in their struggle to survive. One of the mutants, Nightcrawler, has the ability to transport himself (think Star Trek) at will. He is physically distinguished by his dark blue skin and demonic tail. The other, Mystique, has the ability to mimic others physically. Her natural appearance is scaly blue skin. Here’s a paraphrasing of their conversation:
N: I’ve heard you can imitate anyone, even their voice.
M: (using N’s voice) Even their voice.
N: Then why don’t you pretend to be like them all the time?
M: Because we shouldn’t have to.
Like the world of autism some appear to be normal but don't act it and some are physically different as well. Why can't they all just "act normal", regardless of their appearance, and especially when they appear normal?

Because they shouldn’t have to.

tagged as: Autism, Asperger's Syndrome, X-Men