Friday, April 27, 2012

Upcoming iBook Plans

I'm revising my eBook, A Spectrum of Relationships, and plan to release this major update exclusively in the iBook format. I'm trying to decide what is or isn't worth adding to the book beyond more text. The format is going to allow me to include additional features, if I decide to do so.

As for the text, I'm going to expand the workplace section as I try to develop rules and guidelines based on my experiences. Parents, educators, and young people with ASDs have asked me many questions about the workplace — though I'm not sure I have any great answers on the topic. Maybe it helps to know we have some shared experiences as we navigate into the "real world" and work.

Other sections need to be expanded, as well. I rushed through the sections on dating and relationships because those are the least comfortable topics. I am glad I don't need to date, having a wonderful wife, and marriage is difficult for everyone. I'll still expand the text as much as I can. My wife can attest that I'm not easy to live with, so I'm hoping she'll give me a list of topics for the life together sections of the book.

What else should I add? What topics need to be addressed that aren't already in a dozen (or more) other books on autism and social skills? I'm always open to suggestions while I work on this project.

My goal is to release the iBook edition sometime in June because I'm off work for the month of May.

Tuesday, April 24, 2012

Geekiness and autism: Is there a connection?

I've addressed this issue in a few past blogs, generally arguing that stereotypes, even positive ones, are not helpful for a group. A positive stereotype about Asian students, black athletes, or autistic scientists is still a stereotype that ignores the experiences of individuals and creates illusions of what is normal in those groups.

Geekiness and autism: Is there a connection? – GeekOut - CNN.com Blogs

Yes, I'll admit I am a technically-skilled, science-loving person. But I enjoy creative writing. Even the "geek" stereotype bothers me (which is often reduced to socially awkward "nerd" and not actually technical skill, anyway).

Autism, to me, is the hyper-sensitivity of the senses. It is migraines. It is seizures. It is the inability to understand social nonsense (and much of it is nonsense). It is a physical reaction to things that don't seem to cause physical / sensory reactions for other people.

Autism is not about any special gifts. It's the challenges caused by the traits I associate with autism.

I have a preference for computers and solitary work because they spare me the social interactions I dislike. I particularly dislike new situations and I really dislike the fluid nature of workplace socializing.

My theory: Many of us end up "gifted" with computers or science, or some special field because we would rather sit alone and read or do that one thing to remain calm and focused. It is relaxing, at least for me, to sit and write computer code or poetry or whatever I am writing, at my desk in my office without any other people around — but maybe a cat or two at my side.

That preference, even a need, to be alone in a predictable and secure space, leads me to exercise some skills for hours at a time. Of course my technical skills improve. You spend hours reading about and perfecting something, you'll get better at that task.

Anyway, if you do read the article the comments are fairly revealing, too.

Sunday, April 22, 2012

Exhaustion and Autism

I've been working at my computer the last few days, while my limbs are in palsy mode and words take too much effort. When I am tired, it is difficult to control my body. Many autistics I've met tell me the same thing. This is also true for people I know with other physical challenges.

I have a history of mild seizures, migraines, palsy, and other annoying physical challenges. And because I'm exhausted, these issues are starting to overwhelm my ability to focus. Worse, my heart sometimes races and "bounces" with an irregular beat under stress. The tingling sensations are unnerving, at best, and keep me on guard. The doctor tells me the tingling is from anemia, for which I've had to receive blood transfusions in the past. My body is often the biggest obstacle to following through with my ideas.

Autism seems to come with more than one or two challenges. But, those challenges can be addressed. We can learn to navigate around our bodies, with some help and effort. If a situation causes headaches or seizures, I learn to avoid the situation. If I can't deal with something, why put myself at risk? The intelligent approach is to avoid anything potentially dangerous to my wellbeing. Of course, you can't avoid all risks.

Then, when I'm in gripe and whine mode like this, I turn on the Science Channel and see Dr. Hawking "talking" with a computer and discussing the mysterious energy that emits from black holes. Hawking doesn't complain. He doesn't surrender to his body. And he has a lot tougher situation than I do.

The key to remaining sane is to remind myself that my life is pretty great. But, when you're tired it is easy to slip into the whine and gripe mode.

In a few days, with a bit of sleep, I'll be back to normal. Okay, a lot of sleep.

Saturday, April 21, 2012

Not Dead… Moving Again

For those wondering, we have not stopped blogging and nothing horrible has happened to either me or my wife.

We're not dead… we're moving again.

Unlike last summer, when we moved from one state to another, this time we are moving about two miles from our temporary residence to a new home in the same little Pennsylvania township.

The move will give us plenty of material for our blogs. Moving is stressful and chaotic. Moving raises economic issues, especially in this housing market. Moving means shifting our beloved books again. Most of all, it cuts into our creative "me/us" time necessary to recharging and regrouping.

There will be new blog posts. This has been a hectic few years.

Of course, we're moving right as my students have finals, my wife has to take a business trip, and a cat is having health issues. The long list of things happening in our lives merely reminds us how overwhelmed we are until the end of May or June. Beyond May we will be renovating our current house to make it a nice place for another family.

So, blogging is a bit down our list at the moment, at least until we're slightly more settled in the new house. I'll do what I can to get some thoughts posted weekly, but please be patient.

Thursday, April 5, 2012

Celebrating Autistic Artists

I have been invited to the following event, and I would like to encourage others to learn more about this gathering, too:
Adult Autism Showcase Reception - Celebrating National Adult Autism Day
Have some food and drink! This is free to all attendees.
Wednesday, April 18, 2012 from 5:30 PM to 8:00 PM EDT

Pittsburgh Center for the Arts
5th Avenue
Pittsburgh, PA 15232
For more information, visit:
http://www.autismofpa.org/
http://autism-support.org/

Tuesday, April 3, 2012

Autism and Diagnostic Rates

Yes, the media are covering the news that autism rates are skyrocketing, often failing to distinguish the rates of diagnoses from the rates of incidence. Quite simply, we have no idea if "autism(s)" are increasing or not and we have a great deal of evidence that diagnostic practices are uneven, at best.

You can read some of the stories at:
http://www.cnn.com/2012/03/29/health/autism/index.html
http://www.nytimes.com/2012/03/30/health/rate-of-autism-diagnoses-has-climbed-study-finds.html

Notice this from the New York Times:
C.D.C. researchers did not meet any of the children they judged to have an autism spectrum disorder. The team made the decisions based on evaluations of the children, drawn from 14 states. The estimated rates in those states varied widely, from one in 210 children in Alabama to one in 47 in Utah.

Now, either Utah has something dangerous in their water and Alabama is the safest state in the nation, or there is something else at play. What else? It turns out that if you overlay parent income, education, and access to health care over a map of the diagnostic rates, you find that there are correlations between diagnoses and these other variables.

In 2000, the CDC found a autism diagnostic rate of 1:150. Today, that rate is 1:88, but is that an increase in autism or an increase in diagnostic awareness?

Years ago there was a study that found locations near a freeway also predicted higher diagnostic rates of autism. But, guess what? People in urban areas are more likely to be diagnosed with ASDs and those urban areas are more likely to have freeways and highways crisscrossing the metropolitan maps.

See the freeway story at:
http://articles.latimes.com/2010/dec/16/health/la-he-autism-20101217

For a time in the 1990s, Asperger's Syndrome was called the "Silicone Valley Disorder" by reporters. Why? Because children in the San Francisco Bay area were among the most likely to be diagnosed with an ASD — and any learning disability, too. There were studies that then suggested educated parents are more likely to have an autistic child. Really? Or is that these parents have university and private health clinics within minutes of their homes? And these parents can afford expensive screening exams.

Wired magazine asked: "Autism - and its milder cousin Asperger's syndrome - is surging among the children of Silicon Valley. Are math-and-tech genes to blame?"
http://www.wired.com/wired/archive/9.12/aspergers_pr.html

We have no solid evidence, only anecdotal evidence, to suggest that "autism" is actually increasing. But, remember that in 1970 or even 1980 "autism" meant the classic autism associated with severe intellectual and emotional impairment. Autism did not include the "spectrum" many people embrace today. As we widen our classification of autism, we find more autistics!

It is no accident that Utah also has the most diagnosed autistics with average and above-average IQ scores, while Alabama residents with autism diagnoses are more likely to have comorbid mental impairments. In other words, the diagnostic approach in Utah is more likely to include "high-functioning" forms of autism than the diagnostic approach of clinicians in Alabama. This might reflect social differences or training differences.

Some states, notably those with citizens of lower average incomes and educational attainments, have fewer autism cases. This does not mean there is less autism in Alabama or Mississippi than in California and Minnesota. It means California and Minnesota, with the research institutes and medical clinics, are better equipped to identify and offer services to autistics.

Several years ago the National Health System of the United Kingdom did a study of adults and found that when they screened for autism, suddenly there was a 1:100 diagnostic rate. All those adults were not autistic as children, at least not officially. These people did not suddenly develop autism, though, either. What happened was the criteria evolved and our diagnostic methods improved. It turns out, autistics have always been with us, but have been hidden. Apparently, they still are hidden in Alabama, for example.

Information about the NHS study can be read at:
http://www.dailymail.co.uk/health/article-1215283/Major-study-finds-100-adults-autism-far-common-men.html

Depending on how the DSM-V is employed in the years ahead, there might be more or fewer diagnoses of autism in the United States. The actual humans will not have changed: the criteria and methods for evaluation will have been altered.

Maybe there are more incidents of some autisms. When we group so many things under the same category, it is difficult to know what is and is not increasing. I believe many of the autisms we currently cannot identify using physical markers will be identified in my lifetime. Those will cease to be "autism" and be recategorized with new medical names. Again, the people will not have changed, but technology will have altered perceptions of what is and is not autism.

What studies like the new CDC analysis demonstrate is that there is a long, long way to go in understanding and defining autism.
http://www.cdc.gov/ncbddd/autism/data.html