30 August 2005

Natural selection and the prevalence of autism

I've always been interested in how the brain works and have read quite a bit on the subject of evolutionary psychology and biology and some on cognitive neuroscience. (Once Zeke was diagnosed as hyperlexic and PDD/ASD, I was really interested.) Reading through some of many posts on the neurodiversity vs. biomed debate, I've been thinking about the role of natural selection in the recent "explosion" of autism cases.

I figured before I wrote anything I should do a little research, lit review, etc. In my Google search, I came across Origins of Autism from 2003 and an earlier paper, Human Evolution: Evolution and the Structure of Health and Disease, from 1998. It's late and I've not had a chance to read through either of these in any detail, but they definitely look like they are worth reading.

I'm anxious to find out what their conclusions are.

Don't adjust your web browser...

Yes, the site looks a little different today than it did yesterday. I was finding that my dissatisfaction with the appearance/function of the site was distracting me from posting, so I changed it. The template I used is a modified version of my blog ...no straight lines... (which is currently suffering a near fatal lack of input).

I've not been happy with the blogger comments (I think it is my own fault) and the lack of trackback capability, so I've gone back to HaloScan for both. I've also toned down the presence of the Amazon link (which includes my associates ID) and the Google ads. Neither one has generated any revenue for me yet, but it is interesting to see what kind of traffic I get through those sites.

One new Blogger feature I am going to give a workout is the new MS Word add-in. With it, I can compose my blog entries off-line (say on the plane on my way home from Minneapolis later this week) and then very easily publish them, straight from Word, once I'm back online.

Let me know what you think. I promise there is more on Autism, Neurodiversity, Bio-medical treatment, etc. etc. etc. on the way.

29 August 2005

A positive aspect of the autism ‘explosion’

Shawn has this somewhat unique perspective on the escalating number of cases of ASD posted on his blog Along the Spectrum: "I’ve come to the conclusion that the increasing number of people diagnosed with autism is actually a benefit to those that are diagnosed as ‘on the spectrum’."

A few other "silver lining" insights that I agree wholeheartedly with:

The changing criteria can make it look like the experts can’t make up their minds. I view the changes as a sign that our understanding of autism is evolving.

The benefits primarily come from the large number of interventions that have been developed over the past several decades.

All this is a reflection of how our understanding of autism continues to evolve. It serves to help those on the spectrum, and society at large.

Bravo. Though the challenges we face as parents or individuals with autism are sometimes daunting, attitudes like this can give us the means to exploit the "epidemic" to good end.

10 things children with autism wish you knew.

I don't usually reproduce large portions of news stories or other blog posts here when I reference them, but this one I just had to. I got this from South Florida Parenting magazine via Google News.

Here are 10 things every child with autism wishes you knew. [Added emphasis is mine.]

  1. I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

  2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.

    Because I am visually oriented, this may be my first sense to become overstimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.

  3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.

  4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances, double entendres and sarcasm are lost on me.

  5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.

    There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.

  6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn.

    A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations. Here's a great web site for learning more about visual schedules http://www.cesa7.k12.wi.us/newweb/content/rsn/autism.asp

  7. Focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.

  8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.

  9. Try to identify what triggers my meltdowns. This is termed "the antecedent." Meltdowns, blowups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.

  10. If you are a family member, please LOVE ME UNCONDITIONALLY. Banish thoughts such as, "If he would just ..." and "Why can't she ... ?" You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I'm worth it.

    It all comes down to three words: Patience. Patience. Patience.

    Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the GIFTS autism has given me. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?

    You are my foundation. Think through some of those societal rules, and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.

    I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

    They had autism too.
You can bet this is going to get printed and posted on my office wall, in my notebook, e-mailed to family and friends, etc. etc.

26 August 2005

No cure? I don't think so

Reading all the different descriptions in various news stories this week, I noticed that almost all of the stories stated, "There is no cure for autism" (or something very similar). What a downer. Talk about something that just drains your hope. NO CURE. That sucks.

But I don't believe that's true. What these reports should be saying is, "There is no known cure." Sure it's still depressing, but at least there is room for hope for those parents and sufferers who are seeking a cure.

Silver bullets and magic pills

Unfortunately, there are none for autism as a whole. As the article Desperate families search for autism's 'magic pill' from the Daily Telegraph in London discusses, however, this doesn't stop us from trying to find the treatment (or cure) that works best in our case. Although generally negative in tone towards what the author is basically calling "fad cures", it is worth a read.

Another interesting aspect of the article is the perspective on autism from "across the pond" and how it relates to how we see things stateside:

In Britain, blame has been laid at the door of the combined measles, mumps and rubella (MMR) vaccine. In America, parents believe that mercury added to a range of childhood vaccines may be the cause. None of the suggested causes has any solid scientific evidence to support it.
All this hot on the tail of the big story of the week, the death of a 5 year-old autistic boy undergoing chelation treatment. I don't really have anything to add to what has been said so well in other places (for example Ginger and Craig), but the whole thing definitely gives us something to think about when looking at the things we do for our kids, autistic or not.

24 August 2005

It's the little things....

Life with autism is full of big problems and issues, so the little things sometimes fall by the wayside. For instance, riding a bike - a two wheeler. But what is bigger to most kids than being able to ride your bike around the neighborhood? If you've ever tried to teach an autistic child to ride a two-wheeler, you know the challenges. They are the same as for other kids, just a bit more difficult.

I have to admit, we gave up and went with an adult tricycle. Not quite the same as a two-wheeler, but Zeke loves it. I think he likes the freedom to get out and ride around, not to mention the wind in his face. We still want to work with him on a two-wheeler, and I think I've found one possible approach at Lose the Training Wheels.

The expressed goals of this web site are fourfold -- to educate all who will listen:

  1. That bike riding can be efficiently and safely taught,
  2. That the universe of people capable of riding bikes is larger and less restrictive than previously realized,
  3. To introduce you to some insights regarding the bicycle that may have escaped your attention up to now, and
  4. To have a little fun with the bicycle as an intellectual challenge.
There is more information in Adapted Bicycles for Teaching
Riding Skills
(.pdf file), published in the July 05 issue of Teaching Exceptional Children.

For those in the Delaware/Maryland/Virginia area, the 2005 Lower Delaware Autism Foundation Adaptive Bike Camp will be held at Mariner Middle School in Milton Monday, Aug. 29 to Friday, Sept. 2. More information at Autism foundation to hold Bike Camp - Delaware Coast Press - delmarvanow.com

Snapin: A protein with therapy potential for autism

A new paper from researchers at Rutgers University in NJ explores another approach to medical intervention of autism:

While disorders like autism may arise from a multiplicity of causes, research at the cellular level, such as that of Firestein and her Rutgers team, is creating an important point of entry for early intervention with therapeutic drugs.

Dendrites are the input centers of neurons -- where nerve cells receive information that they pass on to another nerve cell or to the brain. When there is an abnormal decrease in dendrite branches, there are fewer sites to receive information and communication may be impeded. Individuals with disorders such as autism and Rett syndrome display not only fewer branches, but also show two quite different dendrite patterns. Firestein's most recent work explores the how and why of dendrite branching and patterning.
The article will appear in the journal Molecular Biology of the Cell and is also available from MBC in Press online in either the Abstract or the Accepted Manuscript.

22 August 2005

Using computers and networks to help build social skills

Zeke is an avid fan of computer and video games. Unlike the stereotypical kid and teenager, though, he has always preferred what you might call "educational" games. Reading, math, etc. The best of these, from this parent's point of view, were the ones that also modeled good social interaction between characters. (The Sesame Street games were good, but I'm partial to the Reader Rabbit and Math Rabbit series. A more modern example is Animal Crossing on the Nintendo Game Cube.)

It would not be an understatement to say that Zeke learned a lot of what he knows about social interaction from these games. (His brother learned how to read watching Zeke play the games and trying to keep up.) He hasn't really used the internet much, but as he gets older I think he will.

And what a great tool for helping socially uncomfortable people (like autistic/Asperger's kids) the internet can be. Check out this little bit from a story on USATODAY.com :

Second Life serves just such a self-esteem boosting function for a group of residents with Asperger's, a high-functioning form of autism that impairs social interaction.

A year ago, John Lester, director of information technology at Boston's Massachusetts General Hospital, spent $1,000 to buy a private 16-acre island in Second Life that he dubbed Brigadoon.

As creator of the support site braintalk.org, Lester had seen the benefits of having patients interact via e-mail. The more realistic setting of Brigadoon has produced even greater breakthroughs.

'I see them making strong social connections that I'd never seen before,' Lester says. 'When they're ready, I've asked them to try and leave the island and visit the rest of Second Life.'
For more on Second Life, check out the official site at http://www.secondlife.com.

Seeking out the genetic roots of autism

Why are there so many more autistic children these days? One friend gave me this (mostly) tongue-in-cheek response: "Geeks are breeding." In more socially acceptable words, "It's all in the genes."

There is no doubt (at least to me) that genetics has a large part to play in autism. Exactly how much is the subject of ongoing studies, as discussed in Scientists begin to trace autism's genetic roots in my hometown newspaper the St. Louis Post Dispatch:

Scientists are beginning to trace the deep genetic roots that keep children like Alex locked in boxes of their brains' own making. Researchers are linking rare changes in common brain chemicals and networks of genes with some of the symptoms that plague children with autism and their families. Scientists at Washington University and the University of Missouri are learning that people with autism are simply at one end of a continuum that encompasses us all.
A couple of other key quotes:
What is known is that autism is a genetic disorder. The identical twin of a child with autism has about a 65 percent chance of having autism and about a 90 percent chance of having one of the autism spectrum disorders, including Aspberger's syndrome and PDD-NOS, said Dr. Eric Hollander, director of the Seaver Autism Center at Mount Sinai School of Medicine in New York. And siblings of autistic children, especially male siblings (boys are four times more likely than girls to have autism), have a higher risk of autism.

Some children get autism because their genes guide their brains to develop in a nontypical way. Miles calls the genetically based disorder "essential autism." But environmental insults, such as toxins, and developmental missteps caused by hormone surges or other factors may also push a child into autism, Miles says. She calls this type of disorder "complex autism."

Autism is not a "you have it or you don't" disorder, Todd said. Instead, it is a highly inheritable continuum of traits, much like height or high blood pressure. The cutoff for being tall or short or having high or low blood pressure is somewhat arbitrary, he said. So is the diagnosis of autism. The measure of autism is usually the inability to cope in the real world, said NYU's Hollander.

"People can be different without having a pathology," Hollander said. "It's only a disorder if it causes stress or interferes with function."
I would put this article on your must read list.

21 August 2005

Sharing your experiences through "A Cup of Comfort"

Blogs have become a great way for those of us living with Autism to share our stories, but I would say that the audience for blogs is still somewhat small. An opportunity to share with a potentially larger audience through a traditional print publication (a book) is available for those interested through the "A Cup of Comfort" anthology.

A Cup of Comfort is a bestselling anthology series featuring compelling true stories about the experiences and relationships that inspire and enrich our lives. These engaging personal essays — written by people from all walks of life — are carefully selected for inclusion in A Cup of Comfort based on originality, creativity, emotional impact, and substance.

We are now seeking submissions for the following books:

A Cup of Comfort for Parents of Children with Autism

A child's diagnosis of autism can turn the parents' world upside-down and inside-out. The incidence of this mysterious neurobiological disorder has risen dramatically in recent years, leaving thousand of parents in search of answers, support, and hope. Yet, for all its challenges and the changes it might bring to family life, autism is not without positives and promise. For this inspirational volume, we seek personal anecdotal stories (not prescriptive articles) about the unique aspects of parenting a child with autism and related disorders (Asperger syndrome, Rett's disorder, disintegrative disorder, pervasive developmental disorder).

Possible themes include but are not limited to: impact on other members of family; creative solutions to everyday challenges; breakthroughs; effective treatments; silver linings; tender moments; helpful support; unexpected positive outcomes; blessings large and small; reasons for hope; adult children with autism. We are most interested in stories written by parents, but will also consider and likely publish some stories written by professionals and family members or friends with intimate knowledge of the child and parents in question.

Submission Deadline: November 15, 2005 (extended from Oct. 1)

Note : Submissions are reviewed throughout the submission period; early entry is encouraged. Deadlines are sometimes extended.
Details are available at A Cup of Comfort.

I learned of this from Bella Online.

19 August 2005

On experts

A little knowledge, they say, is a dangerous thing. Many experts, in many fields, use this as a put down to "amateurs" in the field (in our case, the medical/mental health community and their opinions of parents "meddling" in mainstream autism research and treatment).

But you can also say that a lot of knowledge, too much knowledge in a single area, is dangerous as well. Maybe more so. By knowing (or thinking you know) everything there is to know, you can too easily forget about the effects and impacts of what you do on the world outside your narrow point of view. If all you know, for instance, is that autism is caused solely by genetics and that nothing should be done to cure it because it is not something that can be cured, you are missing out on the big picture. (Obviously, it works the other way as well.)

Ginger has some thoughts on experts that prompted me to post this, though I have to admit the general theme of the post is "borrowed" from a monologue in the HBO movie "The Girl in the Cafe."

Despite Asperger's? Or because of it?

When thinking about the impacts of autism and Asperger's Syndrome, it is hard not to focus on the negative aspects. Even the occasional "silver lining" is most often considered in a negative sense, as in this quote from icBirmingham - Oxford is Jos's final destination:

Despite suffering from Asperger's Syndrome, a mild form of autism, the youngster has already proved himself one of the country's brightest children.
If we were to say, "Because he suffers from Asperger's Syndrome...", and acknowledge that some good things can (note I don't say "do") come from ASD's, would that be admitting defeat in our efforts to cure them? Does it necessarily mean that we accept them as just something we have to live with?

I'm a glass half-full kind of guy, so I prefer to think that we can accept (embrace?) the good while still working to eliminate the bad. What do you think?

18 August 2005

Neurodiversity vs. Bio-Med: Do you really have to choose?


As parents, we know that our autistic children are capable of far more emotion than stereotypes portray. I know the gut-wrenching experience of seeing “typical” kids ignore my son, or, worse yet, seeing idiotic adults assume my son is mentally retarded. Members of the neurodiversity community know that same pain, but they seem to feel it is caused as often by the actions or words of anti-thimerosal/biomedical advocates as much as it is by unfeeling members of the general public. It is incumbent on all of us to learn why they feel that way, and perhaps look at ourselves.

For those of us who believe strongly in biomedical treatments, it is easy to think it is “the answer” for everyone. Most of us who practice biomedical do so partly because we know that, absent some form of intervention, the odds are that our children would never reach the extremely high functioning level of communication practiced by the teen-aged author of the above-referenced blog [Invisible K]. We want our children, when they reach their later teen years, to be able to tell us how they feel about the choices we make in their lives.
A while back (before my extended absence) I posted a couple of pieces on the subject of curing autism, or not. For parents of autistic children, in large part it does come down to the question Wade asks, "What will our kids think about what we've done for them once they are older?" Our big fear, of course, is that we will have done it wrong, but this is a fear that ALL parents have (or at least should).

As parents, it is our responsibility to help our children through their early years and to help them grow into the person they will become. While I do adhere somewhat to the neurodiversity claim, I do not believe that as parents we should just live with it. No more than I believe I should just "live with it" if my neuro-typical kid has troubles, be it in socializing, academics, whatever. All kids need the guidance and nurturing of their parents, friends, and family to become the "best" (wow, what a loaded term) they can.

It's just a bit more challenging for parents of autistic children. (Do I have a gift for understatement, or what? ;-)

Woman faces theft charges over autism advocacy role

A sad example of people preying on the desperate from the Asbury Park Press in NJ:

Annie Mennicucci was desperate to find help for her 8-year-old autistic son, and in October she thought she found it in Nancie Fisher, a Manahawkin woman who advertised expertise in the disorder. 'She said she'd have my son talking in two weeks,' said Mennicucci, a Beachwood resident who paid Fisher $1,500 to serve as an 'advocate' during special-education meetings with Toms River Regional School District officials.

Leanne Laboy, a mother in Barnegat, paid Fisher $125 an hour to work as an advocate for her two children who have Asperger syndrome, a form of autism.

But according to authorities, Laboy and Mennicucci were deceived by Fisher, who stands accused of using fake credentials to win the mothers' trust. Fisher, 47, was charged by Beachwood and Barnegat police in June with theft by deception. The charges have been forwarded to the Ocean County Prosecutor's Office for review, Assistant Prosecutor Martin Anton said Wednesday.

17 August 2005

Artistic Autistics

Most parents or family of an autistic person probably has a story of someone misunderstanding and thinking they said, "My son is artistic." This story about artistic autistics, from SUNY Oswego - News & Events, shows that for some either label will work:

'Autism Rocks at Any Speed' will illustrate the creative outlet that many adults and children with autism have experienced through the visual arts. Five of the exhibited artists are adults, while 6-year-old Dahl created her computer-generated images last year. Although she has difficulty with conversations, Dahl expresses her feelings successfully through her colorful artwork.

The Pros and Cons of Assessments

Some thoughts on The Pros and Cons of Assessments from Bonnie Sayers, with a few tips on how to handle your next assessment.

16 August 2005

Asperger's Syndrome And The Classroom

As the number of autistic kids rises, the ability of the public school systems to adequately provide for them becomes increasingly strained. This is especially true for kids in "regular" classrooms, as described in Asperger's Syndrome And The Classroom:

More and more autistic children are in regular classrooms. But even though these Autistic children may look like any other, they're not. And many teachers don't know how to adapt to the difference.
It is an unfortunate reality that most teachers' training and experience encompasses only a "normal" classroom, where all the kids at least understand the way things are supposed to work (even if they choose not to adhere to it). And this is understandable, from a teacher's point of view, because that is the way most public schools are set up to operate.

Which means we need to change the way most public school systems operate. I think the teachers - the good ones, anyway - are up to it.

Update: You should also check out Bloggg: Article for Teachers for some more thoughts on this.

Study Explores Drug's Effect On Stomach Problems With Autism

Ohio State University is setting up a study that will try to identify linkages between the many GI problems noted in autistic children and the autism that affects them.

The study is designed to determine whether the medication improves gastrointestinal function and assess any related effects on emotions and behavior. In hopes that relieving the gastrointestinal problems might also help the autism, measures of autistic symptoms are included in the study.
They are looking for people in the Columbus, OH area to participate; contact info is available in this story at Study Explores Drug's Effect On Stomach Problems With Autism.

15 August 2005


This is something I originally posted on another (now defunct) blog on the subject of savants, specifically autistic savants. Thought it might be of interest here.

- - -- --- -----
This month (Dec 2003), two publications - Wired Magazine and Scientific American - have articles on the subject [of savants].

The first, Wired 11.12: The Key to Genius, discusses Autistic Savants specifically, with the tag line, Autistic savants are born with miswired neurons - and extraordinary gifts. The breakthrough science behind our new understanding of the brain. The article focuses on the history of a single child, a jazz musician savant.

The other, an article entitled Islands of Genius, is in the Scientific American Mind Winter 2003 special edition available for purchase either online or at the newstand. The article discusses several different savants, with widely varying skills. One of the key things they address is the tendency for savant skills to diminish as the individual is "normalized" into society.
- - -- --- -----

For more info, you can also go to the Wisconsin Medical Society site on the subject.

tagged as: , , , , ,

14 August 2005

ECI School for Children 5K

For the runners in the group, if you can make it to Eatontown, NJ (Monmouth County) on September 18 make sure you check out the ECI School for Children 5K. This was Zeke's school until very recently (when we moved to St. Louis), and I can't say enough good things about the school and its various programs. If I wasn't half-way across the country, you can bet I would be there (even though my running times aren't quite what they used to be!!)

If you do make it to the run, I'd love to hear how it goes.

Autism Case 1: The more things change, the more they stay the same

From Science Daily is the articleThe Age of Autism: Case 1 revisited. What struck me even more than the fact that the first identified case of autism has apparently been 'cured' is the difference in opinion between a family member and a physician about how the cure came about:

[Family] 'When he was finally released (following medical treatment for juvenile arthritis), the nervous condition he was formerly afflicted with was gone,' his brother said. 'The proclivity to excitability and extreme nervousness had all but cleared up, and after that he went to school and had one more little flare-up (of arthritis) when in junior college. They treated it with cortisone.'

[Physician] 'Donald, because of the intuitive wisdom of a tenant farmer couple, who knew how to make him utilize his futile preoccupations for practical purposes and at the same time helped him to maintain contact with his family, is a regularly employed bank teller; while living at home, he takes part in a variety of community activities and has the respect of his fellow townspeople.'
We've learned so much, but still know so little.

12 August 2005


I learned a new word today: Neurodiversity (Google search). There is a very comprehensive site at, you guessed it, neurodiversity.com. I've not had a chance to go into it in any detail yet, and it looks like I have a lot of reading to do.

Bottom line, it seems, is that for the neurodiversity crowd autism is just another way the brain can wire itself. (Obviously a vast oversimplification.) In some ways, I have to admit, I believe that too. (But that's a longer discussion than I want to have in this post!)

That's not to say that autism, or any type of neurodiversity, is necessarily "naturally" occurring. I also happen to believe that mercury - mostly in the form of thimerasol in vaccines - is at least a trigger of autism in those predisposed to it, if not the cause of autism. (Again, much more research is needed on my part before I can address that more completely.)

11 August 2005

CNN.com - Parents in trenches of autism services - Aug 10, 2005

I've never been one to embrace the "mainstream". As a kid, my favorite button had the statement "Why be normal?" (followed closely by "I refuse to grow up"). I recently saw a postcard in a Hot Topic store that said, "You look at me and laugh because I'm different. I look at you and laugh because you are all the same."

With an autistic child, the whole concept of normal and different takes on a whole new perspective, but for me it has really been an excuse (as if I needed one) to explore what it means to be different in a world of normality and normal in a world of difference. Though I'm sure Zeke's life (and the rest of the family's) would have been much different had he not been (become?) autistic, I can't really say that it would have been "better." Sure, we've missed out on some things that everyone else takes for granted, but at the same time we've experienced things and take things for granted that most people can't even imagine. (Can you tell, I'm a glass half-full kind of guy?)

So what brought about this little rant? A couple of quotes from CNN.com - Parents in trenches of autism services - Aug 10, 2005:

Years later both say that vacation served as an adjustment period and a mourning period for the life that David would never have.

"We know that David will never be normal. He won't be mainstreamed," he said. "But he is in a good program, receiving good therapy, and he is picking up good skills. While he will never have a normal life, our hope for him is that he is able to live in a group home and have some kind of a job."
I don't mean to trivialize the nature of autism and the challenges and changes it creates, but there is incredible joy to be found in what most people think of as tragedy. For example, I would be willing to bet that the parents of autistic children know more about their children (both autistic and neuro-typical) than "normal" parents of "normal" children will ever know about theirs. We are forced to become more involved, to understand the how and why of our childrens actions and abilities.