30 September 2005

Work to your kids' strengths

I found this bit of wisdom in the book Never Eat Alone by Keith Ferrazzi. Though geared at self improvement, this quote struck a chord with me as a parent:

The trick is not to work obsessively on the skills and talents you lack, but to focus and cultivate your strengths so that your weaknesses matter less.
The story of Tony DeBlois is an example of this in action. His mother recognized that Tony had serious weaknesses/disabilities to overcome, but also realized that his strength in music could make much of that weakness irrelevant.

I think all of our kids have their own strengths. Much of it may be hidden from us as parents*, or their strength may be something that we don't quite understand or appreciate as worth cultivating.

But it is by cultivating these strengths, in all of our kids (and ourselves), that we can help them be successful in whatever they ultimately decide to do.

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* Ferrazzi also gives this observation from Machiavelli: "Everyone sees what you appear to be, few really know what you are."

29 September 2005

What does it mean to cure autism?

Like most postings on Pat Sullivan's blog, Autism on Good Morning America really got me thinking. In this case, it was the last sentence that sent the wheels spinning (emphasis is Pat's):

Much like TREATING cancer, diabetes, etc., TREATING autism through ABA appears to be big business. CURING it however, yields little but vehement criticism.
What does it mean to "cure" something? From dictionary.com is the following (as cited from the American Heritage® Stedman's Medical Dictionary):
cure (kyr)
  1. Restoration of health;
    recovery from disease.
  2. A method or course of treatment used to restore health.
  3. An agent that restores health; a remedy.
The key seems to be "restore health." For physical ailments, the meaning of this is well known and understood.

But what does it mean in the context of a disorder that is diagnosed based on observation and behavior and is, at its most basic, simply a deviation from the societal norms of behavior and social interaction? Is "changing behavior to be normal" [God, I hate trying to find the right words cause that one just doesn't work] the same as "restoring health." It seems to me that yes, it is.

Of course, all this goes back to the question, "What is autism?" For if you don't really know what the disease is, how can you say you've cured it. Is it possible that there is more than one cause of autism? Are autism and mercury (or heavy-metal) poisoning different problems that just happen to present the same*? Is there only one cure, or can there be several?

If, as the transcript of the Good Morning America segment states, the boy is indistinguishable from his peers, isn't it fair to say the ABA treatment cured him of autism?

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* If you haven't already guessed it, this is kind of what I believe.

28 September 2005

Genius comes in many forms - A review of Some Kind of Genius

Recommendation: You should add this book to your must-read list.

I’ve long been fascinated by genius. Or, more specifically, the process of genius and figuring things out. My book shelves are full of these kind of books, mostly about scientists, mathematicians, and the like. This past weekend I finished Some Kind of Genius, which chronicles the musical achievements of Tony DeBlois from his first toy organ at the age of two and public performances at five that astounded the audience through his training at elite musical schools and his several CDs.

From an early age, Tony’s skill was apparent. He could quickly and easily play back anything he heard. He could even improvise and improve. As he got older and in more and more rigorous training, he could listen to his teacher and play back what they just played even as the teacher continued to play. He also has composed original tunes, played with several bands and organizations, and sings. As someone who dabbles at the piano and has a hard enough time just playing a single song, I consider this ability genius.

From the book is this description of 15 year-old Tony's audition at the Berklee College of Music in Boston:

Janice arrived with Tony at the audition and took him directly to the piano. The members of the committee stood around the piano, anxious to hear him play. Gathered for this audition with Lipman were Rob Rose, director of Berklee's special programs; Dave Weigert, chairman of the piano department; Paul Schmeling, of the piano faculty; Bob Doezema, guitarist/composer and assistant director of the summer program; and famed saxophonist-turned-educator John LaPorta, one of the legends of the school.

They had all sat in this space countless times before, listening to hopeful young musicians from all over the world. Berklee, the planet's top college of contemporary music since its founding in 1945, boasts an alumni list that is a veritable who's who of jazz, rock, electronic music, and other genres, and students know that getting accepted means they'll get the best training available in their field. Berklee alumni include composer/producer Quincy Jones, saxophonist Branford Marsalis, film composer Alan Silvestri, guitarist Al Di Meola, modern big band leader/composer Toshiko Akiyoshi, pianist Diana Krall, saxophonist Bill Evans, singer-songwriter Melissa Etheridge, members of Aerosmith, and many others.

Tony started the audition with a short classical sonatina, then moved on to one of his favorites, George Gershwin's "I Got Rhythm," complete with his improvised insertion of the Flintstones theme, which revealed his clever and original approach to the piece. Those brief moments were a revelation. The committee realized that they had a formidable talent on their hands, a rare, special boy whose playing contrasted sharply with the rest of his behavior.
Did I mention that Tony is blind? And autistic?

When I started reading Some Kind of Genius : The Extraordinary Journey of Musical Savant Tony DeBlois I was expecting (hoping?) to learn more about how Tony DeBlois' mind works, more about Savant Syndrome (which I've written about before). Indeed, there is some basic information about Savant Syndrome in general and discussion of Tony’s particular skills.

From Dr. Darold Treffert is this description of why savants may have the skills they have while the rest of us don’t:
I’ve come to believe in the collective unconscious not as psycological myths that are handed down by generations but as actual wiring, instinctual, which I call software installed. It’s clear that some of these prodigious savants are knowing things they cannot have learned. It had to come installed.

This level of memory may also explain why it appears that we come with tons of software installed that we don’t use. It’s not because we’re lazy but because it would cause the same situiation as when I try to use all my software on my computer at the same time – it would crash.

It’s almost as if some of these chips have a survival value to us if something happens to us. I think we tend to look at ourselves as being born with a tremendous piece of hardware, the brain, and a blank slate, and we become what we put on this disk. But I think savants come with this installed and they have access to it that we don’t.
As impressive as Tony's story is, though, for me the real story of Some Kind of Genius is that of Tony's mother Janice. From well before Tony's birth, Janice's life seems to have prepared her for the challenge, responsibility, and adventure of raising Tony and his brother Ray. And from the account she gives in the book, she more than lived up to the challenge.

For parents of an autistic, or blind or other "disabled," child this is a story of inspiration and what can be achieved if the desire is high enough. Almost all of us will see a little bit of our own story in Janice and Tony’s. The struggle to understand what is happening with your child. The desire to have the best life possible for your child, by figuring out what they are good at and helping them excel. And the fights with the system to make sure your child get what they need and deserve. It is also a story of sacrifice. All "special" parents know nothing is ever easy and getting what your child needs sometimes means sacrificing for yourself and possibly others, all too often leaving “casualties” along the way.

For everyone else, this is an inside look into what special needs kids and their parents must go through to get what is appropriate for them. My only complaint on this front is that Janice and co-author Antonia Felix almost make it seem too easy, too matter-of-fact. An “insider” will understand what was going on in the background of this story, but those unfamiliar with the struggle of “special” kids and parents will likely not quite catch it.

The most uplifting part of Tony’s story is his acceptance by the world of music. In almost every case (at least the ones documented in the book), the professional musicians and music educators that Tony works with see him as a musician first, a nice guy next, and only then as blind and autistic. This, I think, is the hope of all parents, special or otherwise: To help their children find their place in the world and make it their own.

ps. If anyone reading this happens to know Ellen DeGeneres, could you please pass on to her Tony’s desire to meet her and appear on her show?

The publisher offered the book as a complementary copy in hopes that I might mention it here.]

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21 September 2005

Should "autistic" be designated as a minority group?

An interesting article from Amy Nelson, PressBooth - Autism Spectrum Conditions a Social Minority Group raises a very interesting concept for thought and discussion. I have to admit, I'm not quite sure what I think of it.

Like all things surrounding autism, how an individual looks at this problem will depend a great deal on how that individual answers the question, "What is autism?" I'm going to have to think on this some more before posting any thoughts on it, but I figured I'd post this and see what others think.

13 September 2005

A "new generation" of autism treatment

This description of the Relationship Development Intervention ® (RDI®) program was on a press release for an upcoming conference, Going to the Heart of Autism, in San Diego:

The RDI program represents a new generation of autism treatment through which [Dr. Steve] Gutstein has worked to translate research findings into a systematic clinical approach to address the core problems faced by all individuals on the autism spectrum. It is different than "first generation" intervention programs because it is geared toward remediation. A primary assumption of the RDI program is that through focused guided participation in challenging activities, families can increase the flexibility and complexity of neural pathways of people with Autism Spectrum Disorder.

"The RDI program represents a completely new way of thinking about and treating the deficits that are common in all individuals on the autism spectrum," said Gutstein, co-director of the Connections Center. "We are challenging families and professionals to think beyond achieving mere functionality as a successful outcome for individuals with ASD; our reference point for success in the RDI program is fostering loving relationships and enhancing quality of life."

For $150 (or $125 if you register on the site and buy before 30 September), you can purchase the DVD Going to the Heart of Autism – The Relationship Development Intervention Program.

The DVD includes 30+ video clips of parents and families participating in RDI activities. An excellent tool to introduce and educate teachers, therapists, grandparents and friends to RDI. Topics are dynamically presented for a general audience, but would also be appropriate for someone on a post-doctorate level.

Anyone out there have any first hand knowledge or experience with this?

12 September 2005

Getting the Truth Out - a perspective on autism

Kev points to Getting the Truth Out, a site that he says provides a "much more realistic look at autism" than the recently relaunched Autism Society of America website.

Some thoughts on the site from Kev:

In places, for us parents, its not an easy read.

In other places it feels like we as parents have to accept that whilst we know our kids well we don’t know autism as well as autistics.

In still more places, this is a read full of hope and confirmation that difference is not equatable to bad or something that requires curing.
I've not had the chance to go through the whole site (it is set up as a linear pager turner and takes about an hour to go through, according to Kev), so I can't really comment on the site (yet). But it looks like it is definitely worth reading in detail as I try to figure out this thing called autism.

"I'm glad I'm not autistic..."

This was the reaction of a friend's autistic teenager as he watched the Autism Epidemic series that NBC broadcast last spring. How do you tell him that he is autistic?

As our autistic kids get older, it is one more thing we must all address (along with the birds and the bees and everything else that comes with growing up). But how best to do it?

Bonnie has some thoughts and suggestions at An Impression of Autism from a kid on the Autism Spectrum:

I personally do not believe in keeping the diagnosis a secret from family, school or the child. It is all about awareness and making the person with autism understand more about themselves to help them as they grow and become more independent. This all depends on the level of the child.
She recommends some books, from many perspectives, as well as some other ways in which to raise the issue.

The problem also applies to how we inform siblings about their brother's or sister's autism, and some of the resources Bonnie mentions address that as well.

Good stuff from someone who's gone through it.

Neurolearning Blog

On the recommendation of Zack at Brain Waves, I took a look at the Eide Neurolearning Blog. The blog covers a wide range of topics related to learning, specifically the different ways that different people learn. As you might expect, the blog also addresses some autism related topics.

The blog itself is a somewhat recent replacement for an e-mail newsletter that is a companion to the Eide's main website, Neurolearning.com. The Autism Archive addresses "theoretical" topics such as Visual Side of Autism Architecture of Empathy, Science of Autism Ill-Defined as well as more "practical" topics such as Autism Spectrum Disorders - Why Does it Take 10 Minutes to Diagnose? and Music Therapy for Autism.

The other topics are quite interesting as well and include Gifted & Creative Thinking, Learning Styles, Dyslexia, Mathematical Thinking, and Computers, Video Games, and Learning. I've just started going through the whole of the archives, but I like what I see so far. I think you'll like it, too.

09 September 2005

My first exposure to autism

The introduction to autism for most people comes in their pediatrician’s office when they hear those dreaded words. My first experience was a bit different.

As seniors (Class of ’82) at St. Louis University High School, a couple of friends and I were just starting on a three week community service project at the Judevine Center for Autism. Mike, Rich, and I walked through the doors, not really knowing what to expect. We stopped a member of the staff as she walked by so that we could introduce ourselves and find out where we should go. As we were talking a muscular young man, probably 14 or 15 years old, walked towards us wth a smile, apparently happy and in a good mood.

He then punched the woman we were talking with as hard as he could, right in the middle of her back, and turned and walked away.

“?!?” was the look on our faces as we looked around at each other. “What have we gotten ourselves into?” In this case, first impressions were not lasting impressions. It was an incredible experience.

Over the next three weeks we learned a great deal about autism, how it affects kids, and the people who dedicate themselves to helping these kids. The Center served (still does, actually) the entire PDD/Autism spectrum, from the low-end to the high-end. [I hesitate to use those descriptors after reading Form and Functioning: For Autistics, There’s No Truth in Advertising, but it is the best I could come up with for now.]

At first glance, some of the kids just looked like “normal” kids. After a little observation, though, it became obvious that these weren’t your typical kids. Not that this was bad. Once we got to know the kids, and they got to know us, most of them very quickly became just “different.” My experiences in middle and high school had prepared me quite well for “different.” [As a youngster I was labeled as “gifted” and placed in a school for “gifted” kids. Very few “normal” role models there! ;-]

But some of the kids were more than just different. These were the severely autistic kids. One stands out in my mind. He was 17 at the time. He had poor gross motor skills and non-existent fine motor skills. He could not talk, though he had a range of grunts and moans that could express a wide range of emotions, from anger and frustration to joy. (At least, this is how I interpreted them.) And occassionally, very occassionally, you could get some true interaction. Left on his own, this boy would bite himself, would thrash about, would bang his head so hard you could almost feel the walls shake.

The experience served me well 12 years later when I finally did hear those words from a pediatrician. We had known something was up, but hadn’t quite gotten to the point of saying the “A” word out loud. I know I was thinking it. But I was also thinking, “It could be worse. A lot worse.”

07 September 2005

Autism Watch: Your Scientific Guide to Autism

Searching through the web I found Autism Watch: Your Scientific Guide to Autism, edited by Dr. James Laidler (MD). Though it hasn't been updated since May 05, it has some interesting and informative links.

For an idea of Dr. Laidler's motivations, read My Involvement with Autism Quackery, which begins:

Ever since I began the Herculean (some might say Quixotic) task of exposing the quackery and pseudoscience surrounding autism, I have had people ask me, “Are you the same Jim Laidler who used to talk about chelation at autism conferences?” To them, the idea that I could once have been an impassioned supporter of the very thing I am now trying to debunk is hard to fathom. Well, everyone has something in their past that they are embarrassed about—and that is mine.

I consider myself to be a very scientific person. While growing up, I was skeptical and inquiring and naturally gravitated to the sciences. My first brushes with pseudoscience and quackery in medical school left me convinced that “it could never happen to me.” I was sure that my background and training would keep me from making the same mistake as “those people.” I was wrong.

A year or so after my son was diagnosed with autism, with no hope for cure in sight, I was feeling desperate for anything that might help him. My wife attended a conference about “biological treatments for autism.” She came back extremely excited, having heard story after story about “hopeless” cases of autism “cured” by a variety of simple treatments. I was initially skeptical, but my desperation soon got the better of me. We started out with the simple therapies—vitamins and minerals—but soon moved on to the “hard stuff': the gluten- and casein-free diet, secretin, and chelation. Some of it seemed to work—for a while—and that just spurred us to try the next therapy on the horizon. I was “hooked” on hope, which is more addictive and dangerous than any “street” drug. Meanwhile, my second son developed an autism-like disability at the age of 18 months.

What is autism?

No, really. What is it? I know what everyone says when you ask them the question. You can search Google and get a bunch of generic answers. But what, really, is autism?

Is it a result (symptom) of heavy metal toxicity? The overload of mercury in children as a result of childhood vaccinations.

Is it a different kind of mind?

What about all those other things associated with autism, what some call co-morbidities and some call symptoms of autism?

Will we ever know? Can we ever know? Does it matter? If we ever do find out what causes it, should we try to eradicate it? What if someone doesn't want to be cured? Whose decision is it?

If we can't/shouldn't cure autism, can we cure society?

< /stream-of-consciousness ramble>

Time waster - Nerd test

Not sure if this score is a good thing or not, considering what it is.

I am nerdier than 96% of all people. Are you nerdier? Click here to find out!

It does explain a lot, though ;-)

06 September 2005

Dan Olmsted's "Age of Autism" series

From Autism - A Parent's Perspective is a set of links to the complete Dan Olmsted's "Age of Autism" series. Nice to have all in one place.

Update (09/07/2005): One angry mom

Experiences with Special Ed: The Ugly

As bad as the whole of the Kindergarten year was, one incident stands out. Julie came to me one night and told me that Zeke’s teacher had called to talk about his behavior, his acting out in class. What it came down to was she was asking for Julie’s permission to strap Zeke down in his chair so he would sit still in class.

This was 1996, not even 10 years ago, and the teacher (with the concurrence of Zeke’s case worker in the district) wanted to STRAP MY CHILD DOWN IN HIS CHAIR. Julie, of course, said no. Here’s where it gets ugly.

Not long after Julie told me about this obscene request, I happened to be at the school. This teacher, who had already approached Julie and been turned down, told me that she would like to use physical restraints on Zeke. Did she tell me that she had already asked Julie, and that Julie had said no? What do you think? Needless to say, I also said no. (What I thought was, “Why don’t you let me strap you down in a chair!?”)

It wasn’t long after this that we requested the IEP update and got the placement Zeke needed.

Experiences with Special Ed: The Bad

Every day in various autism blogs and e-mail lists/groups are stories of people fighting the system, trying to get the best for their kids. This on top of learning to cope with the autism in general. As if parents of autistic children needed it, local school districts seem to feel compelled to provide additional challenges. For us, that was Zeke’s kindergarten year.

The “program” (if you could call it that) went under the name of Kindergarten for Neurologically Impaired (NI). This was a separate classroom in the regular neighbor elementary school. If I remember right there were 6 or 7 kids in the classroom, along with the teacher and an aide.

It didn’t take long before things went bad. Increasingly, Zeke was acting out in class. He was miserable in the mornings: he didn’t want to get on the bus to go to school. This had never happened before, so it obviously stressed us out. My job had me away from home more than I was there, so Julie was doubly stressed having to deal with this.

“What in the world is the problem?” we asked ourselves, because we’d not experienced this before. One trip to the classroom and all was revealed.

Zeke was hyperlexic. He has been able to read (decode) words since he was about 2 years old or so. The alphabet is old, old hat to him. So imagine my shock distress HORROR when I went in to observe one day and saw the following:

  • All of the kids and the teacher were sitting quietly around a table

  • They were going around the table, each kid taking a turn at sounding out every letter in the alphabet. It took some of the kids up to a minute to sound out a letter.

  • Zeke, 5 years old and bored, confused and getting very upset at the other kids inability to say the letters.

  • Zeke, acting out.

So we tried to explain a few things about Zeke that they obviously hadn’t figured out. To no avail.

Eventually, they put Zeke into a regular Kindergarten class. No aide. No support of any kind. The teacher was clueless, I don’t think she even knew what autism was. Zeke ended up being put at a desk isolated in a corner of the room so he wouldn’t disturb the other kids.

Fortunately, we had access to the internet and the various support forums available. One of the key ones we used was the American Hyperlexia Association. Through AHA, we found another parent at the Jersey Shore in similar circumstances. It was through her that we discovered School for Children, where we successfully petitioned to have Zeke place.

Experiences with Special Ed: The Good

I was in the Army when we first began to realize something was up. After taking Zeke to his pediatrictian, we were referred to a child study team in Kansas City (University of Kansas Medical School, I think). Following the study team diagnosis (I’ll discuss that more in another post), we received services from the local school district. Zeke was 3.

The staff in the district was very helpful and understanding. Zeke’s teacher was a new teacher, young and inexperienced. But what she lacked in experience she more than made up for in enthusiasm and a desired to figure out what made Zeke tick. We hated putting him on a school bus each day at such an early age, but it made a huge difference.

We also received in-home support services through the district/town. Key in this group was the speech therapist. (Karm, are you out there somewhere?) Unbelievable how good she was, and the impact she had. Not only did she help Zeke, she helped us to understand many things we hadn’t quite figured out. (Example: Zeke was hyperlexic, so he responded best to written vs. spoken language. Karm’s advice – put written labels on everything so Zeke would learn the words. BRILLIANT.)

The transition from the local district in Kansas to the new district in New Jersey was pretty smooth. Obviously, we had to figure out what services were available, what the differences in state laws were, etc. We were unfamiliar with the federal statutes, though if I remember correctly there was still a lot of growing pains in those.

The local district had a “pre-school handicapped” program that covered a fairly broad array of disabilities. The lead teacher in this classroom was very good. Like the pre-school teacher before her, she was very interested in Zeke as an individual. Zeke made good progress that year.

Following a nightmarish Kindergarten year (detailed in “The Bad” and “The Ugly” sections), Zeke began attending the School For Children at Monmouth University. We got the IEP worked out and Zeke began the first of eight wonderful years there. When reassignment time came around (I was still in the Army at this point), I resigned my commission so that Zeke could stay in the program. That should tell you how highly we thought of that program. (There is not enough room to go into all the good from those eight years here.)

After some serious research into the programs and services available for both Zeke and his NT brother Ian, this past summer we moved back to my original hometown of St. Louis. Within the St. Louis County School system is the Special School District, which includes programs very similar to the program Zeke was in at SFC.

Having learned from our last move that preparation would be important in any change of school district, we made the time to get to St. Louis last spring and meet some of the key people within SSD and at the schools we thought would be best for Zeke. When we finally moved to St. Louis and registered Zeke at the local high school, we had copies of his latest IEP, progress report, and his results from the NJ Grade Eight Proficiency Assement (GEPA) to give to the registrar. We also let her know that we were familiar with what was available in SSD and what we thought would be the best placement.

A meeting was scheduled, everyone was invited. Summer vacation was just winding down, staff was just getting back, and the school’s opening was delayed by several days due to storm damage. We weren’t able to convene the IEP team until the day after school started. (Yes, this is still part of “The Good”.) But when we met, everyone that needed to be there was there. The team members read his IEP, listened to our past experiences and future goals, talked a bit to Zeke, and (after a bit of translation from NJ to MO formatting) came up with a new IEP.

Zeke started school the very next day. He loves it so far.

Experiences with Special Education System

We’ve had over 10 years of experience with “special education” and other support services. This has ranged from pre-school now through the beginning of high school and has spanned three different states (Kansas, New Jersey, and Missouri). In the beginning, it was nerve wracking, trying to not only figure out autism but trying to figure out the “system.”

Taken as a whole, we’ve been successful in navigating the systems and getting what we felt was best. Now that Zeke is older, he is also participating and beginning to help us figure out what he thinks is best for him.

Along with the good stuff, however, there have been plenty of bad and, yes, ugly, experiences. Some of these were our “fault,” usually a lack of knowledge of what was possible. Some were a true miscommunication between us and whomever. Some (the ugly) were because of poorly trained people who had no desire (or maybe ability?) to learn anything new, much less how to help a child that didn’t quite fit the mold.

In order to avoid one single, long post, I’ve broken the story down into the Good, the Bad, and the Ugly. There is obviously a lot more to all the stories, I just want to give an idea of some things that can happen. I also want to let parents out there struggling with some of these same issues that it is possible to get good services for your autistic kids. It may take some work on your part, and you may have to go through some hell to get there, but perserverance will definitely pay off.

02 September 2005

Your point of view makes all the difference

In a comment to my recent post 10 things children with autism wish you knew, Kevin pointed me to the essay Why I dislike "person first" language by Jim Sinclair as a counter to the first of the 10 things. (Thanks Kevin for the link, there are several other pages at the site worth reading as well.) Here is that item from my original post, as well as the 3 main points of the essay:

  • 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)?
- - -- --- ----- --------
  • I am not a "person with autism." I am an autistic person. Saying "person with autism" suggests that:
    • the autism can be separated from the person
    • even if autism is part of the person, it isn't a very important part
    • autism is something bad--so bad that is isn't even consistent with being a person
This distinction of language has helped me focus something that has been nagging me around the edges about the whole neurodiversity vs. BioMed discussion here and elsewhere. Specifically, that the two arguments come from two completely different perspectives.

Most arguments from the neurodiversity camp (at least most that I’ve come across) seem to come from the point of view of autistics or Aspies themselves. These people are typically adults (or older teenagers) and are speaking out for themselves, proud of who they are and aware of their differences from the norm. Those that are parents also take this approach in raising their autistic children.

On the other hand, the staunchest advocates of BioMed approaches and the search for a cure seem to be the parents of young, recently diagnosed children with autism. These parents, for the most part, are not themselves autistic and are speaking out for what they believe is in the best interest of their child with autism. Though they will do what they need to in order to help their children live with their autism in the world, they still hope for a way to allow their children to function typically.

And you know what? I think both groups are absolutely right in what they are doing and saying. From the frame of reference they are living in, their actions are perfectly appropriate. In fact, I don’t think this is much different than how things work in the NT spectrum.

When kids are young, it is the parent’s job to make sure the children are healthy, that they are able to function in school, etc. Though it is nice to consider the child’s wishes, it doesn’t really matter what the kid thinks or wants. The parents are in control and will ultimately play a large part in how the child ends up. [Insert “nature” vs. “nurture” discussion here.]

As the kid gets older, he/she becomes more and more independent. The parents still exert some influence and control, but at some point the coin flips: It no longer matters what the parents think or want. At that point, the child has become an adult and can then take on the world on his or her own terms.

Either way, it is not my place to tell anyone else how they should be raising their kids nor theirs to tell me. Of course, it is always good to know options and perspectives other than my own to help me make the best decisions.

01 September 2005

Natural selection and the prevalence of autism – take 2

I’ve had a chance to read Origins of Autism and the work it is derived from, Human Evolution: Evolution and the Structure of Health and Disease.  In fact, I’ve read them twice; just to make sure I didn’t miss anything (though I’m sure I missed quite a bit).  

The bulk of the two articles address the theory/science/history of natural selection, sexual selection, and Lamarckian selection (or pangenesis) as espsoused by Charles Darwin, as well as a bit of cultural history of the human race.  The author, Andrew Lehman, then looks at autism and other related ‘disorders’ from those perspectives.  

[As a quick caveat:  I’ve not had a chance to check into the credentials of the authors of these papers or their citations in support of their work.  That’ll be the next step.  For now, I was really interested in their conclusions.]

The bottom line of the lengthy paper can be summarized in a couple of sentences:

  • Autism is “normal” in the right cultural context; it is just “wrong” for the cultural context we live in today, i.e. hierachical patriarchies.

  • The return (yes, the return) of autism is in large part due to the increased “agressiveness” of women in society and the transfer of control of procreation from men to women.


Yep, you read that last one right.  Here’s the paragraph from the paper (emphasis is mine):
Two cultural characteristics, female infanticide and several wives for a single husband, both behave as functions of sexual selection in a patriarchal culture, reinforcing sexual types. Remember, with fewer women procreating, the male furthest from the cultural ideal fails to have children, his genetics unable to continue. Now imagine a culture whose boundaries have broken down, where infanticide has ended, the selection for specific traits within a culture has ceased and women have the power to pick procreation partners using whatever criteria they choose. This is the world we live in. No one way is being preserved. All ways are open. For the first time culture is undefined and open ended. It is no coincidence that in the United States so much that is new has been and is being created. It is the first place in the world characterized by a complete breakdown of a specific cultural criteria for the ideal man. Women in contemporary western culture are choosing mates based on a new criteria [sic], their own idiosyncratic ideas based on the hodgepodge of cultures that comprise their background combined with the American ideal of independence. This new criteria is now becoming the cultural criteria, as women and culture together, form a new understanding of what they want in a mate. In our modern world, it is not the family or the male that chooses a mate, but the female. Only she decides who the father of her children will be. Women are no longer chosen exclusively for their tendency to cooperate with the ideals of patriarchal culture. The result: more and more higher testosterone women are having babies in modern culture. A wider and wider variety of males are presented with procreation opportunities, particularly the maturationally delayed males formerly often unable to find a mate in patriarchal culture. The return of the 'nerd', so to speak.
Here are a couple of other paragraphs that really stood out for me (again, the emphasis is mine):
For the last few thousand years males have been selecting the females least likely to stray and so provide them with male heirs. Males have been selecting females less likely to wield authority, females who are willing to cooperate with a patriarchal agenda. Females have been selecting males most likely to accumulate wealth, who can stay alive long enough to provide babies and provision a large brood in a relatively monogamous society. Revered features of the ideal male in a matrifocal society are disparaged by patriarchy. But it is these features, and the characteristics of the individuals that thrive in that kind of world, that is the world of the autistic child.Without constant exposure to the primary features of the matrifocal world, the neurological structure of a child organized physically, mentally, and emotionally to experience the world in that way will languish. Unceasing interactional music with highly evolved rhythms and constant touch with sophisticated dance are essential to a child inclined toward maturational delay. A diet familiar to the physiology of tens of thousands of years ago is appropriate for the facile functioning of that physical system. Their brains crave highly sophisticated pattern in sound and physical space. Their bodies crave protein, vegetables, fruits, nuts, natural oils, roots. How sad and ironic, that a brain created to perceive and appreciate subtle nuances in relationship in space and time, understimulated by a society relatively devoid of song and dance, and a diet characterized by wheat, dairy and other unfamiliar substances, ends up in relationship with itself only, unable to cross bridges to other human beings.
A lot to think about.  I’ll write more on this again, I’m sure.