Who's reading your blog? Some thoughts on the (unfortunate) need for self-censorship

A key reason that blogging has become so popular is the fact that anyone can write about anything they feel passionately about and easily (and immediately) share it with the world. If you are writing about a hobby or some other such activity, this is great. You can share ideas, meet new people, learn new things. The rare few can even make money with blogs.

Of course, the downside of blogging (at least the public blogging that most people do) is that the whole world can see what you write. As Jakob Nielsenwrote in his Alert Box column Weblog Usability: The Top Ten Design Mistakes:

Whenever you post anything to the Internet -- whether on a weblog, in a discussion group, or even in an email -- think about how it will look to a hiring manager in ten years. Once stuff's out, it's archived, cached, and indexed in many services that you might never be aware of.

Years from now, someone might consider hiring you for a plum job and take the precaution of 'nooping you first. (Just taking a stab at what's next after Google. Rest assured: there will be some super-snooper service that'll dredge up anything about you that's ever been bitified.) What will they find in terms of naïvely puerile "analysis" or offendingly nasty flames published under your name?

Think twice before posting. If you don't want your future boss to read it, don't post.

For parents of autistic children writing about their experiences with autism, treatment methods, and working (dealing) with schools on IEPs and appropriate placement the paragraph could easily be re-written:

Whenever you post anything to the Internet -- whether on a weblog, in a discussion group, or even in an email -- think about how it will look to the special education and support staff at your school district. Once stuff's out, it's archived, cached, and indexed in many services that you might never be aware of.

Years (or months or weeks) from now, your district may be preparing for your IEP meeting and take the precaution of 'nooping you first. (Just taking a stab at what's next after Google. Rest assured: there will be some super-snooper service that'll dredge up anything about you that's ever been bitified.) What will they find in terms of naïvely puerile "analysis" or offendingly nasty flames published under your name?

Think twice before posting. If you don't want your school system and future teachers to read it, don't post.

In an ideal world, parents and teachers/staff could work together as partners with only the best interests of the kids in mind. Unfortunately, this ain't no ideal world. The stories of retribution from teachers and districts against parents that speak out against what they see as problems are too numerous - and sometimes too disturbing - to mention.

The result is that some parents choose to self-censor their posts so they don't address all the challenges and issues. As the parent of an autistic son, I've found an unbelievable amount of helpful information from other parents via the internet. Without it, we would have missed out on quite a bit early on. For parents with newly diagnosed children on the autism spectrum, the promise of the internet as a way of gaining information and support is in danger of being undermined because of the bad nature of some teachers.

And that's the thing, it is just some teachers. But like the old saying goes, one bad apple can ruin the bunch. When it comes to our kids, we have to weigh the potential good we can gain and spread with the ever present thought, "What if my teacher is a real ass about this?"

In the end, like everything else, it is a personal decision that we all have to make and live with.

(As a quick aside, retribution against kids for the words of parents is by no means limited to parents of autistic or other special needs kids. Through the years I've been appalled (shocked just isn't quite strong enough) at the behavior I've seen from teachers and administrators that have lashed out at kids because parents "got involved.")


tagges as: Autism, Blogging, Self-censorship

Autistic Conjecture of the Day

If you've not yet seen it, I encourage you to check out Autistic Conjecture of the Day:

Dazed and amazed by the theories, research, and snake oil offered up as *THE* answer to autism - both its causation and cure? Well, so am I. On this, my little notebook in cyberspace, I will be collecting and publishing articles from both the past and present, dealing with autism from the medical, behaviorist, personal, naturopathic, and parenting points of view. May we all, in the midst of these multitudinous words, find what we need to move on with courage, strength, and dignity.

In a nice touch, Susan has categorized her posts into Legitimate and Illegitimate Conjectures. (Though I think it is safe to say that there will be some disagreement on which are legitimate and which are not.)

tagged as: Autism, Autism Blog

Professor’s talk details autistic life

Another "success story" of an adult Aspie at Western Front Online - Professor’s talk details autistic life.

Western adjunct anthropology professor Dawn Prince-Hughes, 41, was diagnosed with a form of autism called Asperger’s syndrome when she was 36 years old. In her book, titled Songs of the Gorilla Nation : My Journey Through Autism Prince-Hughes said Asperger’s syndrome is characterized by difficulties processing stimuli, sensory oversensitivities and challenges in social interaction.

One of the questions that comes up ocassionally for parents is, "Should I tell my autistic son/daughter that they are autistic?" Prince-Hughes description of what she felt when she found out points us in the right direction.

Prince-Hughes began learning about Asperger’s syndrome as an adult, after doctors diagnosed a young relative with Asperger’s. Prince-Hughes compiled detailed memories from her childhood and examples of her symptoms of the syndrome, then called a psychiatrist for a diagnosis when she was 36 years old.

The diagnosis had a major impact on her life, Prince-Hughes said. Rather than making her feel abnormal or separated from others, Prince-Hughes said it let her know she was not alone.

“Just by knowing that I could put it in this box, my symptoms actually decreased overnight,” Prince-Hughes said.

The story as told in the article is compelling enough (dropped out of school at 15, spent the next 5 years homeless), I'm looking forward to reading the book.


tagged as: Autism, Asperger's, Gorilla, Neurodiversity

Thoughts from an Aspie CEO

In an interview about his company BitTorrent, CEO Bram Cohen had this to say about his Asperger's:

You've been open about being diagnosed with Asperger's syndrome. How has that affected you as a software author and as a CEO?
It makes you less emotional when you're coding. It's like you don't take it personally when the computer doesn't work well. I'm still relatively new to the CEO thing, so ask me that question in a couple years.

What's the biggest misconception about Asperger's?
That people with Asperger's are immoral, which isn't true at all. People with Asperger's frequently don't understand what's going on, and don't know how to express what they're thinking, but that's very different from not wanting to do the right thing.

tagged as: Autism, Asperger's, Bram Cohen, BitTorrent

Are all men "rain men"?

I came across the article Rain men: In every boy there is a bit of 'idiot savant' by Philip Beadle in the Education Guardian. Since I've written before about idiot savant, I was obviously interested. The impetus for the article is Nick Hornby's book Fever Pitch.

I didn't read Nick Hornby's Fever Pitch immediately it came out. I'm dimly aware, however, that it struck a chord with women. My closest female friend told me she'd found it to be a unique insight into the male psyche, before revealing, "I'd hate to be man. It must be awful."

Fever Pitch portrays males as hopeless creatures, all of whom are somewhere on the autistic spectrum. At the risk of reinforcing unhelpful gender stereotypes (and all women are merely a complex network of obsessions with flowers, make-up and shopping), I find it helpful, as a teacher, to remember it's the rarest of birds that sorts its record collection into chronological within alphabetical. I'll spell this out carefully for those in the back row: b-o-y-s a-n-d g-i-r-l-s a-r-e d-i-f-f-e-r-e-n-t.

We boys can be prone to monomaniacal obsession; to over-enjoying the repetition of surreal and meaningless nonsense. (On a four-hour car journey last weekend, my eight-year-old son and I ripped huge fissures into my wife's psyche through fevered and non-stop repetition of the word "bungalow".)

Beadle goes on to discuss some interesting experiments on the differences between men and women (boys and girls). The real take-away for me, though, is the last two paragraphs:

You can't reverse evolution in a 45- minute lesson. If boys do display characteristics associated with the spectrum of autism, there is one element of their propensity for obsession we should encourage. Autistic people have been recorded to have near super-human powers in specific areas: the story of the "idiot savant" who cannot relate well to other humans, but who is able to draw a technically accurate picture of Chartres cathedral from memory is well known. There is an argument that within each boy there is a bit of the "idiot savant". As an English teacher you are aware of nouns (idiot) being stolid, unchangeable labels and adjectives (savant) as fluid, therefore more optimistic.

With boys, our focus should be on celebrating and developing the adjective, rather than punishing the noun.

Not sure what my point is, or if I even have one this time. It was probably the reference to Hornby, whose books (and the movies that come from some of them) I've enjoyed. And who, by the way, has an autistic son.

tagged as: Autism, Nick Hornby, Idiot Savant

Thoughts on the Neurodiversity vs. Bio-med debate

Even though it was not about autism, when I first read the post below (with blanks filled in) I could not help thinking about how the debate between the Neurodiversity and Bio-med communities sometimes plays out.

There are incredibly intelligent discussions out there, most notably (at least in my aggregator) from Wade Rankin, Ginger, and Kevin Leitch. Just a quick glance at the comments to their more eloquent posts, however, will show that there are an incredible number of people who have no interest in learning anything from these posts (or, for that matter, anything that doesn’t support what they already believe).

How can you have a reasoned discourse if there is very little reason displayed?
- - -- --- ----- -------- -------------

Fill in the blanks. (For those of you familiar with the Neurodiversity vs. Biomed debate, it should be easy.)

To me, the most fascinating aspect of the debate over ___________ versus ____________ is that neither side understands the other side’s argument. Better yet, no one seems to understand their own side’s argument. But that doesn’t stop anyone from having a passionate opinion.

I’ve been doing lots of reading on the subject. I fully expected to validate my preconceived notion that the _________ had a mountain of credible evidence and the ___________ folks were kooks disguising themselves as scientists. That’s the way the media paints it. I had no reason to believe otherwise. The truth is a lot more interesting. Allow me to set you straight.

First of all, you’d be hard pressed to find a useful debate about ____________ and ____________, of the sort that you could use to form your own opinion. I can’t find one, and I’ve looked. What you have instead is each side misrepresenting the other’s position and then making a good argument for why the misrepresentation is wrong. (If you don’t believe me, just watch the comments I get to this post.)

To make things more complicated, both sides have good and bad arguments lumped into them. If you make a good argument on your side, I respond by attacking your bad argument instead. If it were a debate contest, both sides would lose.

The other problem for people like me is that the “good” arguments on both sides are too complicated for me to understand. My fallback position in situations like this has always been to trust the experts – the scientists – of which more than 90%+ are sure that __________ got it right.

The ____________ people have a not-so-kooky argument against the idea of trusting 90%+ of scientists.

I’d be surprised if 90%+ of scientists are wrong about _________. But if you think it’s impossible, you’ve lived a sheltered life.

(For the original context (completely unrelated to autism) of the above “analysis,” check out The Dilbert Blog.)

Tagged as: Autism, Neurodiversity, Thimerosol / Thimerosal

Planning for the future: reality check for parents of special needs kids

The article Adviser has plans for special needs children: South Florida Sun-Sentinel addresses an issue that all parents of special needs kids, who may never be able to care for themselves, should start looking at as soon as possible - financial planning.

The article highlights the efforts of Karen Greenberg:

Based on her experiences as the mother of 18-year-old Ricky, who has autism, she used her financial planning and accounting background to research ways parents can plan for the futures of their special needs children.

'In all my training, I hadn't come up with this particular situation -- where a family member would be dependent all of their life -- or never read anything about what to do with a disabled family member,' Greenberg said.

Financial advisers told her to leave everything to her daughter. But Greenberg said she wasn't happy with that advice and didn't want her son's care to be her daughter's burden.

'I started asking my peers at support groups and other places what they were doing about estate planning. I found most parents hadn't done any planning or they were afraid to make mistakes, so they did nothing,' she said. 'But they were interested in having me take a look at their plans. That's when I decided to make this into a not-for-profit organization, so I could help others.'

'The key is education. We teach them about the Special Needs Trust. We make sure their child is not named as beneficiary in their wills, life insurance or retirement accounts and that it goes to the trust. We encourage that the trust is set up while the parents are alive,' Vogel said.

I'm sure there is something similar available in other states. If anyone knows of any, please let me know.


Tagged as: Autism, Special Needs Kids, Estate Planning

Normal noise often painful to autistic kids, study finds

I don't think that any parent of an autistic child (or autistic kids/adults themselves) will be surprised by the findings of this study: Noise, even 'normal' noise, bothers a lot of autistic kids. What I found most interesting about the study results, at least as reported in this story in the NZ Herald, is the grouping of autistic and gifted children together in the study's findings.

The so-what of the findings is expressed very well by Stuart McLaren of Massey University in the wrap up to the story:

Providing quiet spaces is one way to help autistic and gifted children, and researchers will investigate other strategies.

'Much of the present work is focused on these children being integrated into regular early childhood education environments.

'However, we must look more closely at the learning environment too,' says Mr McLaren.

'Why is it acceptable to expect autistic children to negotiate their way around any such environment when we never expect children with physical disabilities to negotiate their way up a flight of steps?'

Tagged as: Autism

Augmentin and autism: A link?

Another potential cause/trigger for autism is identified in the paper Could one of the most widely prescribed antibiotics amoxicillin/clavulante "Augmentin" be a risk factor for autism? A press release on eMediaWire discusses the "overwhelming response from parents" (emphasis mine):

The author of the seminal paper: Could one of the most widely prescribed antibiotics amoxicillin/clavulanate “AUGMENTIN” be a risk factor for autism? published in Medical Hypotheses January 2005 (64, 312-315) has received thousands of emails, letters and phone calls from parents of children who experienced regressive autism following one or more dosages of Augmentin (amoxicillin/clavulanate).

From one perspective, it seems that the paper is showing that other environmental triggers can be responsible for autism. To me, unfortunately, the last sentence makes these parents look like they'll reach out for anything to blame for their kid's autism. I fear that the anti- bio-med groups will latch onto this to try to remove any serious debate about the topic, much as they are trying to do with the autism-thimerosol question.

Another interesting tidbit from the press release seems to be a linking of what some (Kevin Leitch, for example) consider comorbidities as actual causes of autism (again, the emphasis is mine):

In her paper, the author proposed a mechanism whereby children who received the antibiotic may develop autism as a result of the urea/ammonia toxicity in the gastrointestinal tract. She further links the introduction of augmentin in the early 1980’s for the use in children with otitis media, and the large numbers of children who have autism with protracted ear infections.

I've not had the chance to read the actual paper (actually, I've not been able to find a free full-text version), but here is the abstract from deep within the National Institutes of Health site:

Autism is an ever increasing problem in the United States. Characterized by multiple deficits in the areas of communication, development, and behavior; autistic children are found in every community in this country and abroad. Recent findings point to a significant increase in autism which can not be accounted for by means such as misclassification. The state of California recently reported a 273% increase in the number of cases between 1987 and 1998.

Many possible causes have been proposed which range from genetics to environment, with a combination of the two most likely. Since the introduction of clavulanate/amoxicillin in the 1980s there has been the increase in numbers of cases of autism. In this study 206 children under the age of three years with autism were screened by means of a detailed case history. A significant commonality was discerned and that being the level of chronic otitis media.

These children were found to have a mean number 9.96 bouts of otitis media (with a standard error of the mean of +/-1.83). This represents a sum total for all 206 children of 2052 bouts of otitis media. These children received a mean number of 12.04 courses of antibiotics (standard error of the mean of +/-.125). The sum total number of courses of antibiotics given to all 206 children was 2480. Of those 893 courses were Augmentin. with 362 of these Augmentin courses administered under the age of one year.

A proposed mechanism whereby the production of clavulanate may yield high levels of urea/ammonia in the child is presented. Further an examination of this mechanism needs to be undertaken to determine if a subset of children are at risk for neurotoxicity from the use of clavulanic acid in pharmaceutical preparations.

Also check out Do antibiotics cause autism?

Tagged as: Autism