29 Marbles

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.

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.

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.

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.

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.”

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?

Like me, Wade at Injecting Sense is TRYING TO UNDERSTAND THE NEURODIVERSITY MOVEMENT:

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? ;-)