Wednesday, June 30, 2010

Autism Screening

I thought this new study was interesting because it reveals that the instruments ("tests") used to evaluate individuals for autism differ in quality. Some work reasonable well, while others should either be revised or abandoned.

The instruments tested were those administered by caregivers, not researchers or clinicians. That means these are not the battery of instruments used during a neuro-psychological screening. A "level 2" screening is one that parents, educators, or trained caregivers give to determine if more screening is necessary. A level 2 instrument is not definitive and can only, at best, identify individuals who should undergo further evaluation.

Screening Accuracy of Level 2 Autism Spectrum Disorder Rating Scales: A Review of Selected Instruments

Autism, Vol. 14, No. 4, 263-284 (2010)

Megan Norris and Luc Lecavalier
Nisonger Center and Department of Psychology, The Ohio State University

The goal of this review was to examine the state of Level 2, caregiver-completed rating scales for the screening of AutismSpectrum Disorders (ASDs) in individuals above the age of three years. We focused on screening accuracy and paid particular attention to comparison groups. Inclusion criteria required that scales be developed post ICD-10, be ASD-specific, and have published evidence of diagnostic validity in peer-reviewed journals. The five scales reviewed were: the Social Communication Questionnaire (SCQ), Gilliam Autism Rating Scale/Gilliam Autism Rating Scale-SecondEdition (GARS/GARS-2), Social Responsiveness Scale (SRS), Autism Spectrum Screening Questionnaire (ASSQ), and Asperger Syndrome Diagnostic Scale (ASDS). Twenty total studies were located, most examining the SCQ. Research on the other scales was limited. Comparisons between scales were few and available evidence of diagnostic validity is scarce for certain subpopulations (e.g., lower functioning individuals, PDDNOS). Overall, the SCQ performed well, the SRS and ASSQ showed promise, and the GARS/GARS-2 and ASDS demonstrated poor sensitivity. This review indicates that Level 2 ASD caregiver-completed rating scales are in need of much more scientific scrutiny.
I know some schools do use GARS and ASDS to determine program eligibility. Unfortunately, some school counselors (generally not clinicians) do view these as definitive tests. Thankfully, that is rare -- most schools and special programs know any level 2 instrument should only be used to consider a further referral for evaluation.

There are stories of deaf students being diagnosed as autistic in error. Vision problems can also affect student scores on some questionnaires. The worst situation I heard about involved a student with a brain tumor -- which definitely affects the behavior and responsiveness of a child.

If a child has been evaluated with a level 2 instrument and referred to a psychologist or psychiatrist for full evaluation, that does not necessarily mean the child has autism. Remember, autism at early ages can resemble serious neurological conditions. A full screening is important. Always see a specialist and never assume the level 2 instrument is sufficient.

Level 2 exams might help a child obtain services, but they are no match for a medical examination accompanied by a full assessment.

Declaration of Independence

Increasingly, I am aware of the "communities" to which I don't belong. An overused word in the humanities, "community" is more than a group of people with some minor similarities. A community has to have some manner of unified sense of purpose.

I belong to several organizations without any desire to interact with other members or associates. I don't attend any regular meetings of any organization. When I attend conferences, I try to arrive close to when I am scheduled to speak and then depart as soon as possible.

Bluntly, people often annoy me. People are cliquish. They want to be around people like themselves, which means I find myself outside most "communities" to which I am expected to relate.

When my wife and I first moved, I tried to attend one social gathering of an organization -- but left before the event began. I couldn't tolerate the setting, which was a restaurant with a decidedly political decor. Maybe that doesn't matter to most people, but I don't want to read political slogans at dinner. A non-political organization should not meet in a political setting.

I spent the last four years avoiding my academic department, even working remotely when possible. The political tribes were upsetting, especially during a difficult transition time on campus due to budget cuts. I didn't want to choose sides or try to determine who might win or lose in various power games.

Academic conferences in the humanities are notoriously political, while I would rather focus on how best to teach. I've been to conferences with presentations including "Dropping the F-Bomb" and "Interrogating the White Student." These were not about teaching; they were small political rallies.

People hijack events. They take over conferences or meetings to make their points, even when entirely inappropriate.

Autism gatherings are tribal. I don't like that or need that. I want to work on teaching and helping students with special needs. I don't want to have to determine which cliques are the "right" cliques to join.

Even technology gathering descend into the tribal: Apple vs. Microsoft vs. Linux (vs. other Linux); PHP vs. Perl vs. Python; MySQL vs. PostgreSQL vs. NoSQL; HTML vs. Flash; and so on.

Debate might be informative, but tribalism and argument are not reasoned debate. If I'm at a presentation on HTML5 and AJAX coding, I'm not interested in a debate about Flash -- I want to focus on coding techniques for JavaScript.

The best option increasingly is to stay home. I like my wife, my cats, and books. I don't need to waste time trying to decipher idiotic tribal rituals.

I booked a much-to-long stay at the ASA conference. It was about price, when I should have considered my lack of tolerance for people. Thankfully, I can sit in a hotel room much of the time, writing and reading.

A tribe of one.

Tuesday, June 29, 2010

Conferences

Summer is conference season.

I honestly don't follow the "autism community" and did not know there was an autism conference for individuals with ASDs. The "Autreat" is currently underway, but I thought I'd mention it so people could learn more about the sponsor and consider future events.

Autism Network International
Autreat 2010: Living Life the Autly Way
June 28 - July 2, 2010
Bradford, Pennsylvania
http://www.autreat.com/

I can't say much about ANI or Autreat. I'm sure there is much more to the conference and I'd learn a lot from any presentations. I find the title of the conference odd; I don't know what "autly" is and the suggestion of a "way" to live doesn't appeal to me. Still, I generally dislike conference titles.

The "big event" within the autism community is probably the ASA conference.

Autism Society of America
41st Annual Autism Society National
Conference and Exposition will be held
July 7-10, 2010 in Dallas, TX
http://www.autism-society.org/

I have spoken at ASA conferences and will be at this year's gathering. I tend to wander the vendor area and listen to what people are saying. There are some hucksters present at these events, but there are also a lot of publishers, researchers, and service providers.

There will be a gathering of bloggers Friday night during the ASA conference. If you are going and would like to meet up with the outspoken members of the community, please e-mail me and I'll pass along the "e-vite" link to the Happy Hour event.

Wednesday, June 23, 2010

Different vs. Disabled

Anosognosia is the state of denying a serious disability. In the most serious cases, it is a mental health disorder, causing the deaf to insist they can hear or the blind to insist they can see. Obviously, not a good thing and potentially dangerous.

I have received e-mails critical of the instances when I have described myself as disabled. People have offered many terms and phrases as alternatives -- and I have rejected these: differently abled, special, challenged, gifted, blessed, evolved, perceptually acute, sensitive, et cetera.

I don't deny my limits. I know I cannot do some things.

There are definitely physical impairments I have that might not apply universally. To assume I am only writing of my unique neurology is a mistake. I am physically disabled; these are mild limits and do not affect my daily existence.

The neurological differences I face are not a "gift" most days.

In "neuro-diversity" communities, there are those who deny autism is anything more than a difference. These are a minority, but a vocal minority nonetheless. The logic of these activists is to challenge and resist public misconceptions of autism, especially within the high-functioning / Asperger's syndrome subcategories.

It is definitely a disability to be unable to handle mass transit, many public spaces, bright lights, loud sounds, strong smells, and so on. It is not a mere "difference" to be stuck at home many days, unable to tolerate the sensory overload of normal existence.

Yes, I am different, but I'm also disabled.

Do not confused disabled for unable. I think that's the real concern of activists: having a disability does not mean an individual cannot adapt and plan around any personal limitations. We all work around our limits.

Monday, June 21, 2010

NYT: Vaccine Critics = Tea Party?

The following mixes and matches several quite different groups, confounding people that represent various political views -- not a monolithic anti-government movement, but general skepticism:

The Very Angry Tea Party
By J.M. BERNSTEIN

http://opinionator.blogs.nytimes.com/2010/06/13/the-very-angry-tea-party/

In a bracing and astringent essay in The New York Review of Books, pointedly titled "The Tea Party Jacobins," Mark Lilla argued that the hodge-podge list of animosities Tea party supporters mention fail to cohere into a body of political grievances in the conventional sense: they lack the connecting thread of achieving political power. It is not for the sake of acquiring political power that Tea Party activists demonstrate, rally and organize; rather, Lilla argues, the appeal is to "individual opinion, individual autonomy, and individual choice, all in the service of neutralizing, not using, political power." He calls Tea Party activists a "libertarian mob" since they proclaim the belief "that they can do everything themselves if they are only left alone." Lilla cites as examples the growth in home schooling, and, amidst a mounting distrust in doctors and conventional medicine, growing numbers of parents refusing to have their children vaccinated, not to mention our resurgent passion for self-diagnosis, self-medication and home therapies.

This is an absurd simplification, a caricature of parents opposed to vaccination mandates. I don't agree with the anti-vaccine movement, but to group all vaccine skeptics with the Tea Party movement is absurd. There are left, right, and center individuals opposed to vaccine mandates for different reasons.

Most of the anti-vax and homeopathy people I know are on the moderate to far political left. They often complain about gov't vaccination requirements while also arguing for empirical evidence-based medical care. Pick and choose the science / gov't agency you trust, I suppose? Honestly, no political ideology is consistent in the messy reality of a republic.

In the middle of the political spectrum, there are those who are anti-vaccine mandate. There are libertarian arguments that any mandate on people is, necessarily, a limit on individual choice and free will. Yet, libertarians are not of one view on mandates: some support "opt-in" while others prefer "opt-out" provisions for vaccine mandates. Again, there is no one approach.

On the religious "conservative" right, refusing medical care, including vaccines, is based on interpretations of faiths. I have met Christians and Muslims who oppose injecting anything into blood. I don't understand the scriptural basis, but the point is that these people aren't basing their anti-vaccine position on politics alone, but on faith.

Simple generalizations about people are generally wrong. The New York Times columnists have generalized to the point of grouping people together who don't actually share political views.

The autism community is not monolithic. The vaccine skeptics are not monolithic. I might not agree with the vaccine movements, but I appreciate there is not one reason alone to be against mandates. The authors should reconsider their own biases and try to understand skepticism is not limited to Tea Party activists. A lot of people don't trust the government or science.

Again, I am not a vaccine skeptic, but I think this article was incomplete and unfair to people of all political views. Simplification and caricatures are the norm in media, though.

Sunday, June 20, 2010

No Apologies, No Guilt

As I read articles on, interviews of, and blogs by the family members of people with special needs, I keep encountering apologies and guilt. This is particularly true of parents and spouses who feel guilty for wanting personal time. The sense of being trapped by a routine is a regular topic.

Stop feeling guilty and, please, stop apologizing for wanting to have a hobby or desiring intellectual stimulation — or wanting time to do nothing at all.

For parents, realize it is draining to deal with the normal needs of any child. From medical appointments to teacher-parent conferences, raising a child is one "event" after another. Even the first haircut can be traumatic. It is normal to need time away from parenting. Yes, it is more challenging to get time away if you have a special needs child, but you do need that time.

My wife has several artistic / crafting hobbies, as well as an interest in genealogy. Her hobbies are important because they are a break from work, house renovations, and dealing with me. She doesn't need an excuse to justify giving herself time to clear her head.

If you aren't emotionally healthy, how could you possibly handle caring for someone with special needs? Instead of apologizing for being human, accept it and embrace the need to recharge. You can share the results of your hobbies or interests, but you don't need to share the creative time.

My wife needs breaks from me. I'm sure there are some days when going to work feels like a vacation. There is nothing wrong with saying, honestly, you need to get away from things for a few hours.

One spouse of a disabled person told me her friends made her feel guilty for going to lunch or dinner with them. What sort of friends do that? Find new friends, is my first suggestion. People have no right to expect you to be the perfect Florence Nightingale. How utterly absurd.

Giving time and energy to caring for another person is difficult. People can't always understand the daily stress of living with a disabled individual.

Find balance in your life and don't worry about what anyone else might say. In fact, what you fear people are thinking is probably not realistic. Most people are so worried about being judged, they don't waste time judging every one else. The handful of truly judgmental jerks don't need to be cluttering up your life.

You don't need to be a self-indulgent narcissist, but you need to maintain your own identity. That identity is more than "parent" or "spouse" of a person with special needs.

Friday, June 18, 2010

Job Search and Queries

I spent the last two days working on two versions of my résumé: techie me and teacher me. I feel "incomplete" when I read one or the other, as if I'm not being honest about who I am.

The technology résumé is modeled on samples I found online at two executive job sites. It does look nice and I am working on the wording. The special education résumé is going to take a bit more time to refine. Generally, a long curriculum vitae is the standard in higher education; trimming content to two pages was a challenge.

As I edited these new career documents, I found minor errors in my full CV, errors that also existed in my online CV. It is frustrating, since my CV has been maintained since the mid 1990s. You would think a document that is updated every year wouldn't have any errors. Somehow, careless mistakes do slip past my eyes. The worst error was a misspelling of "university." The automatic spellcheck in Word should have caught that one.

The two résumés are meant for both job hunting, in the traditional sense, and to accompany query letters to publishers.

I always wonder if listing my speaking invitations will scare employers. Including presentation titles like "Life with Autism" and "Autistic Me: A Teacher's Journey" seems like a warning to employers. One more reason to market myself as uniquely qualified on matters of autism, I suppose. I decided to omit my speaking history from the technology résumé.

In so many ways, looking for a "normal job" after the academic job hunt is tough. I really wanted one of teaching posts for which I interviewed. Now, I'm trying to remind myself to be confident and keep on task. My job for now is finding job or selling one of my manuscripts. Either or both would be good.

Emotionally, I feel lousy about relying on my wife to support us. I completed the doctorate so I wouldn't be a drag on the household. I owe her so much for supporting my dreams, even if the dreams didn't quite work out as planned. She's my motivation to get the résumés right and to keep sending out queries.

Never give up. Never surrender.

Wednesday, June 16, 2010

Work and Writing

I officially completed my Ph.D in May, meaning I'm far from joining the "long-term unemployed" statistically. The problem is that I have been unemployed off and on since leaving my undergraduate program at the end of 1990. Writing is an on-going project, certainly, but actual jobs have come and gone. Now, I worry that the cycle of jobs might not even repeat. What if, instead of a job for a year or two, there's nothing?

Yes, writing is a job. I know that, logically, but I would like a bit more security. I want some fiscal stability. I want to know I have a paycheck and a way to support my interests.

If I sell my writing, then I won't worry so much, but I am tense.

To treat writing like a job means I have to tell myself something will sell. That means I have to motivate myself every day to treat writing like a job -- but one for which I am not yet getting paid. It is exhausting.
Had I landed a teaching post, I would write and teach. That was the plan with the Ph.D -- security plus some time to write during summers. Now, I have lots of time to write, I suppose.

The key is to focus and build some confidence. To be honest, confidence in writing is not confidence in my social networking or sales abilities. That's why I would definitely do better with an agent. For now, I need to keep at the writing until I locate an agent.

Being social would help my career, no matter what I did. But, that's not who I am.

Tuesday, June 15, 2010

Facebook Group

The Autism Hub is the best guide to autism blogs on the Internet. However, it is primarily a way to track the latest posting and topics on blogs. It is not really meant to discuss the nature of blogging or the technology challenges.

To help autism bloggers keep in touch and share ideas, I am helping with the launch of a Facebook group. This group is not for discussions about autism itself, but mainly a way for the autism bloggers to locate each other. Other blogging directories and Web rings have had some issues, so this is an attempt to connect and nothing more.

http://www.facebook.com/group.php?gid=129009840455825
Autism Bloggers on Facebook

Sunday, June 13, 2010

Genetic Labels and Consequences

Scientists are seeking what makes people different, at least genetically. What is done with this information is the realm of ethics and morality, not genetics.

I'm autistic or a person with autism or whatever. I don't care what the label is. I was what I am before the label even existed and I'll be me long after some silly group of people change the labels and criteria again. What will not change (in theory) is my genetic composition.

That fact of whatever genetic variation exists in my cells does not change regardless of the label and even regardless of a geneticist discovering it or not. "Autism(s)" predate genetics just as all human conditions predate their modern-language labels and cultural reactions.

I am curious to know what make me who I am. What I do not want are choices made that assume my traits somehow reduce the value of my life. That's a cultural matter. We must change perceptions of "autism" within the culture; only then will the genetic issues not be quickly associated with concerns of eugenics.

If I were a geneticist (far more interesting to me than what I did study), I would be too focused on the data to ponder the misuse of information as it becomes cultural knowledge. I love data. I always want more data and more facts.

Yes, science needs ethics, but these geneticists are creating maps that could in fact help a lot of people someday. There are some horrible (fatal) genetic conditions. I can understand wanting to map those. Along the way, the reality is that most human traits will be mapped in some way.

Will information on genetics be misused? Probably. Which is why I hope we discuss the implications constantly and never forget the potential we already see in Down Syndrome screening. The 92 percent termination rate troubles me.

If we had tests for autism tomorrow, it would be up to parents how to use such data. I'm not comfortable telling someone she must have a child she would reject. I'm also not comfortable with selective abortion. I don't have any easy answers -- and neither do the geneticists.

From today's New York Times, we are also reminded that locating genes has not produced many cures or treatments. In other words, locating an anomaly is about as far as we have come in the last decade.

Life and Autism

After so many stories about autism and genetics in the news media, a parent asked me "that question" yet again: Would I want to be cured? What if my "autistic traits" could have been prevented?

I have answered this multiple times, on this site and elsewhere.

First, my life is better than that of the vast majority of humans currently living or at most points of known history. Plentiful food, good shelter, and a relatively easy existence within the American middle-class. Any complaints are the result of not considering my good fortune to be born at this time, within this culture.

What parents are really asking is if their children are in some way unhappy, displeased, bitter, et cetera, for as a result of existing with autism or any other disability.

I have no idea how someone else feels about being alive. None. People I can't imagine have any problems take their own lives. People I would imagine are miserable keep fighting for each extra day.

Physically, who doesn't have aches and pains? Humans are frail little creatures like most others on this planet. A little virus can destroy us, which is pretty pitiful.

I can generally work around my sensitivities. It's not like I'm going to hang out in a dance club or seek out a wool shirt to wear. You learn your limits and plan around them.

Do I wish I could deal with people better? Yes, but I also don't want to be fake or dishonest. I have a handful of friends, especially my wife, and I'm okay with that.

No two people respond to similar lives in the same way. Some people are naturally more resilient, I suppose. I'm not wildly enthusiastic every day, but I'm content most days. That's pretty good.

Be thankful for life, for each day, and I suppose your children might notice and reflect that philosophy. Complain a lot and wallow in misery about life, using whatever excuse you have to be miserable, and your children will definitely notice.

I have no idea if my life would be "better" or not with a cure / treatment. It wouldn't be my life as I know it, anyway.

Friday, June 11, 2010

Research and Causes

The great portal/blog Left Brain / Right Brain has a lengthy post on current research dealing with potential causes of autism. The post offers links to multiple peer-reviewed studies underway on the familiar suspects, ranging from mercury to the age of parents.

Of course, no amount of research will influence the zealots, but I can at least suggest reading the actual studies underway:

Again, I can only suggest reading and following the research. Many of the early findings demonstrate what we already know: mercury and other toxins are dangerous. What the findings do not, at least not yet, demonstrate is that mercury or other heavy metals are the primary cause of autism.

Mercury exposure in adults does cause neurological damage. This is generally not genetic in nature, but is serious neurological damage affecting the brain and central nervous system. When we find genetic markers, that is a different form of damage. Birth defects can be caused by toxins, without a doubt.

It is unlikely we will locate a single cause for the genetic damage associated with some types of autism. I do not believe mercury will be a major factor, but data are needed. I also hope people understand that genetic damage cannot be caused by a vaccine -- genetic damage occurs before birth. This does not mean the mother or father wasn't exposed to toxins or other factors causing damage to DNA passed on to a fetus.

My point is that we should follow serious research. It is underway and should help eliminate some theories. Research can only disprove the null, it cannot prove with complete certainty anything. Again, that's very difficult to explain, so I won't try in this posting.

I'm hoping the research projects exclude a great many theories so we can move ahead.

Wednesday, June 9, 2010

Researchers find genes related to autism

I am quite open that I support genetic-based theories of autism etiology, while also open to the notion of triggers. Genetic predisposition is only that: predisposition. Many genetic conditions respond to triggers, so the two are not exclusionary. Today, there is a bit more on the genetics of autism.

But even the most common genetic changes in his study were found in only 1% or less of patients, Scherer says.

That suggests that "most individuals with autism are probably genetically quite unique, each having their own genetic form of autism," says Scherer, of the Hospital for Sick Children in Toronto, one of 120 scientists from 11 countries working on the study, called the Autism Genome Project.

As co-author Stanley Nelson of the University of California-Los Angeles describes it, "If you had 100 kids with autism, you could have 100 different genetic causes."

I have written before about the likelihood of the following:

[D]octors may be able to use these findings to offer parents an early genetic test to help predict children's risk of development autism, says coauthor Louise Gallagher of Trinity College Dubin.

I am still struggling with issues of genetic screening. I dislike making such screening mandatory, but I also can envision insurers and those financially affected (including the government) demanding screening during pregnancies. Minnesota already screens all children born in the state, unless a parent opts out -- and most don't realize they can. It's not exactly the main concern of new parents.

We are years from genetic tests, but few people predicted how far genetic mapping would come in the last two decades.

Tuesday, June 8, 2010

Colorado mental-health counselor charged with murdering infant son - The Denver Post

Colorado mental-health counselor charged with murdering infant son - The Denver Post

Police: Autism was motive in Colo. child's killing

BOULDER, Colo. — Police say a woman accused of killing her infant son did it because she believed the boy was autistic and thought his condition would "ruin" her life.
Stephanie Rochester, 34, was charged Monday with murder in the June 1 suffocation death of her 6-month-old son, Rylan. According to an affidavit seeking her arrest, Rochester wanted to commit suicide but didn't want to "burden her husband" with the potentially autistic boy.
What can be said about this? It is troubling; I can already imagine various responses:
  • Eventually, a genetic screen would help prevent this. (or…)
  • This is why screening would be dangerous.
  • Some people think autism is worse than death.
  • This woman must be mentally ill.
  • And so on, and so on…
I think this woman was simply a self-absorbed, immature, malignant narcissist. If she had committed suicide, I'd not assume the same level of narcissism -- but clearly she didn't want to sacrifice anything impinging on her "fun" in the end. That's disturbing. This woman would have felt the same way with a "normal" child over time. Children are always an effort and demand personal sacrifices of their parents.

As for the autism angle, I've read to many news reports like this. It's not always an infant, either.

The argument of would a screening been "better" than murder is a debate I can't engage. Down Syndrome is the parallel. Given a choice, clearly parents have overwhelmingly opted to terminate pregnancies. That does concern me. I have no easy answer.

This story, however, is plain and simple murder of a child. I know some "noted ethicists" (Peter Singer) have argued early infanticide is somehow different. No, it's murder.

Monday, June 7, 2010

Univ. of Minnesota Student - "Recovered" via Lovaas ABA?

This is not my usual post -- but I received my Univ. of Minnesota Alumni Magazine today and am annoyed.

My Ph.D. is from Minnesota, and it is no secret I do not like the institution. My bias definitely affects my general attitude when reading anything linked to UMN. That out of the way…

And although Lovaas later refined his therapy, eliminating the use of shock and physical punishments to develop what is now known as Applied Behavior Analysis (ABA)—the treatment that helped Joe Mohs—his reputation was irreparably damaged by the article, which critics of ABA still cite when decrying the treatment as cruel.

I dislike how many therapists approach ABA-based therapies. I've seen therapy sessions that drag on for hours. I consider that cruel, simply because who wouldn't cave to demands after hours? I associate it with an interrogation technique. Repeat again and again, "I saw Martians." Eventually, you cave, like Orwell's Winston Smith in 1984.

The professors at Minnesota are also believers in the pollution, environmental toxin theory:

Eric Larsson, an adjunct psychology professor at the University, is in the former camp. “Visit any school and it’s obvious that there are many more children these days with major language disorders and severe impairments than there used to be,” he says. “I believe that compares directly with the rise in pollution.”

Maybe that is true. I don't know and even suspect there might be triggers for some autistic traits. However, I would be careful as a Ph.D. since people take minor statements and make them matters of faith.

Yes, the Minnesota professor even considers vaccines a possible trigger:

Perhaps, Larsson and others say, children who are genetically predisposed to autism or have already been exposed to too much mercury are “pushed over the edge” neurologically when mercury enters their system. Bob Mohs believes this may have been the case with Joe, since he seemed to become more withdrawn after his vaccinations.

Sorry, but that line of reasoning troubles me coming from an R1 researcher. Maybe he was interviewed before Wakefield was stripped of his medical board standing in the U.K.

The position of these experts is that ABA should be the endless hours of "treatment" I have witnessed.

While studies show 45 percent to 50 percent of autistic children who receive ABA therapy overcome their symptoms sufficiently to function independently in school, this level of benefit is greater for children who receive ABA services in the intensive way Lovaas intended.

I don't know how to react to that. The article claims a 45% success rate for Lovaas, which is much higher than I have seen mentioned elsewhere. Some improvement is likely, but how much? The claim seems miraculous, which I know many ABA proponents claim. I just haven't seen such success rates. Some success? Definitely. But could the same results be done with fewer hours of better therapies? Of course, we don't know what "better" is, but I hope we find something that doesn't require eight to ten hours a day with a therapist. (An hour with a therapist tries my patience -- never intend to see another one.)

“If a child doesn’t touch people, you reach out and take his hand and touch it and praise that, and you might spend weeks doing one thing.”

I still dislike my reading and speech therapists from 1975 or so. I'm not about to endorse weeks of making someone sensitive to touch endure "sensory therapy" for weeks. My reaction is biased, I admit. Maybe ABA is great for some people. I still dislike it almost instinctively. Desensitizing someone isn't really "curing" -- it's masking whatever the real issues are. That worries me. I don't like how closely this resembles animal training. Command, reward, repeat.

And yes, I felt that some faculty at Minnesota treated me like I was less than human. I felt they did not respect my differences and were uncomfortable with anything I might want out of the ordinary. I'm told it's because in Minnesota, all the children are above average (nod to Garrison Keillor).

Sunday, June 6, 2010

Overloaded by Organizing

I have a long list of things I want to organize. The list dates back to the late 1990s, as some collections never stop expanded. Some of the items I'm trying to organize:

1. Books. Most are shelved by topic and author while others remain in boxes. Books are entered into a database, too. I was using EndNote, but migrated to Bookends. I have been creating duplicate data online via Goodreads and Visual Bookshelf. The data from Bookends is also on my iPod Touch so I know what I own when shopping.

2. CDs. I love music and have a lot of CDs, which I prefer for sound quality. Yes, I can tell the difference until they up the bit rate for all downloads. Classical music, jazz, and show tunes really do sound "choppy" and "hollow" at 128Kbps. The CDs are piled up downstairs as I create index card dividers for them. I have the CDs sorted by artist, year, and title in an Excel spreadsheet, as well.

3. Fonts. I have thousands of commercial and registered shareware fonts. I have been sorting them by category off and on for over a year, removing the ones I'd never use from my computer systems (keeping backups). Why so slow? I study them as I sort the fonts. If publishers included more metadata, the sorting would be automatic. I get lost in the history of typography.

4. Classic radio shows. Old-time radio is a passion of mine. I have thousands of old shows, which I am slowly sorting. iTunes has made the process easier, but it still takes time to research shows, episodes, and other information. I try to record as much data as possible.

Organizing is an impulse, an urge. I like things in their place. I love data, too. As a result, I end up taking days, months, and even years organizing. Knowing things are not organized causes stress, yet I never seem to finish organizing the various bits and bytes in my life.

I start organizing one collection and get distracted by another. I really want to finish, yet can't seem to follow through from start to finish.

It's hard to know what to sort when I am not working; I end up frozen at times, unable to sort anything. It is frustrating when I can't focus and organize, which leads to more stress and more frustration. The overwhelming sense of disappointment in myself, for my lack of focus… a lousy cycle.

My writing suffers the same problem. I start projects only to get distracted by other projects. That's why I need calendars and lists. Organization is something I crave, and something I never seem to master. You would think I'd at least finish organizing physical things when I can't organize the thoughts in my head.

At least I have been finishing some writing projects. Now I need to follow-through with submitting the manuscripts to agents and publishers. Yes, I created a submission database, too. That means organizing a database of people and companies.

Friday, June 4, 2010

I Am Only Me...

I am sick and tired of the "Bill Gates has AS" and "Big Bang Theory is about a group of people with ASDs" lines of advocates who think they are helping. And yes, I've mentioned this to the other Ph.D.s with autism… of which I am one.

It is rare to be a genius or a great artist or a professor. It is rare to be on the Fortune 400 or to be performing on Broadway.

Autism is not a superpower. It is a difference.

I've met people with AS and PDD-NOS diagnoses who feel horrible about themselves because they aren't "smart like Temple or special like Tammet." The reality is, few people are! We should not be making people feel guilty for not living up to a mythology.

Only ten percent of people with any form of autism display savant abilities. Ten percent. Yes, that his much higher than the general public, but it is still one in ten, not three-fourths, on half, or even a quarter of people with ASDs.

And those of us with "special talents" are not necessarily able to function without assistance. I'm useless without my family and my wife. I would never leave the house, never meet a deadline, and would certainly forget to see doctors for important issues.

I am not "independent" in the traditional sense. I admit it. The truth, as my wife reminds me, is that most humans need help. Success is usually a team effort. In my case, my wife, sister, parents, grandparents, aunts, uncles, and so many others make sure I am able to use my intellectual curiosities for something meaningful.

Feel good about what you or your child or your friends with autism can do and don't expect them to be superheroes. I should not feel like I have to live up to Tammet's math skills, Wiltshire's paintings, or Perner's analytics.

When people tell me that my Ph.D inspires them, I cringe. Don't be inspired by me. Be inspired by my mother or my wife. Be inspired by the people who make my life possible.

It has gotten harder with time. I know my wife struggles and deserves so much more. I am glad she takes time for herself, and I encourage her to pursue her hobbies. (She's better at them than she realizes.) Admire her, because she's the special person on this team.

Thursday, June 3, 2010

Copious Writing is More than Exercise

Earlier today someone asked, "Do you really write 100 pages or more a month?" Absolutely. I cannot imagine any serious prose or dramatic writer produces fewer than 15,000 words a month and much closer to 25,000. Most of what I write is for myself, but a substantial amount is intended for future publication or production. Also, writing a page is not the same as keeping the page.

I have averaged more than 300 pages of "non-personal" writing each six months for the last two years. Most of this has been academic, since I was completing my doctorate. Since January, I have written three full-length screenplays, totaling 297 pages (excluding title pages), and six magazine columns (1000 words each). I'm also working on several other projects I hope to complete before the end of June. Add my personal writing, blogging, presentation handouts, and website content and the amount of writing exceeds 1000 pages every six months.

Wednesday, June 2, 2010

Autie, Aspie, Autistic, with Autism...

There is no "right answer" to the following, and generally I don't think as much about this as others do.

I don't like many of the labels people with ASDs have adopted. I have no idea why, but I don't care for autie, aspie, aspergian, or several other terms I've seen online and in print.

But, I don't also don't know if it is better to write: "person with autism" or "autistic person" because to me these are like comparing "person with blue eyes" and "blue-eyed person." I suppose a better comparison is "person with deafness" and "deaf person."

My traits are "autistic," but several people have responded negatively to "autistic" as an adjective. I don't know that "autism" is a great noun, though, since we have no idea what that means. Autism itself is defined by traits -- it is necessarily an adjectival label.

I believe there are likely many "autisms" with various causes. The similar traits are "autistic" traits. That's why I'm okay with "The Autistic Me" compared to "The Me with Autism." That implies there are times when I'm not with autism -- maybe I'm with hyperactivity. (I certainly could be called "The Hyperactive Me.")

As I said, I don't have any answers, only personal preferences.

Life is Good, but...

This morning I awoke to Mimi and Alex purring next to me. It is overcast, which I like, and cool.

As I was doing the dishes, I thought about how fortunate we are right now. We have a house, incomplete as it is, the yard is looking much better this summer, and graduate school is over for both of us. In most ways, we are in pretty good shape.

The only thing bothering me is the same thing that has been an issue for two decades -- I'm not contributing much to our position.

Everything we have is because of my wife.

The plan was that I would locate a teaching post after graduate school. I would then be providing the income that would allow us additional security. We could settle down and relax a little. Instead, I'm unemployed with student loans looming over us.

I'm working to pitch more writing. I've tried working on an autism book, but I don't know what I have to express that is original. My monthly column and other projects are only a few dollars here and there. I'm going to search for more freelance opportunities.

Until I'm earning a genuine "living" I have to be thankful I have such a great wife… but she does deserve more.