The Autistic Place [A Place for Learning]

We've had a number of stories lately on mothers killing autistic or possibly autistic children.

• Mother Posts Blog Blaming Stress Before Killing...
• Texas Mom Kills Children, Blames Autism
• Colorado Mom Wanted to Have 'Fun in Life'

What can anyone say about this? Children are stressful, normal or not. Depression, stress, lack of supports, et cetera, are not excuses to kill. I do not doubt depression is real in some cases, but I do not tolerate any excuse for killing children. Even if we don't have perfect supports, there are supports in most cities and counties. Families also have a responsibility to intervene. It is impossible for me to imagine no one was aware problems were present before these children were killed.

The association of autism with infanticide is a common theme in media. I won't bother listing examples.

I don't feel "lonely" most of the time, I feel isolated. That's different. I don't want to deal with people, I want to do things that too often require dealing with people -- leaving me stuck at home some days. People for me are ways to gain knowledge and data; I am interested in people with knowledge I don't posses yet want want to learn. I don't care to be social for no reason. Even with a reason, I'd rather skip the social elements.

I've written that I do sometimes wish to be more social. Though hard to explain, I perceive there would be intellectual benefits -- people would be more comfortable sharing information with me if I were more "charming." So, when I say I wish I were more socially skilled, it is not because I miss the skills or want them for enjoyment, but I wish I could persuade more people with skills and knowledge I admire to be mentors.

My wife is not social, either, but she does much better with people than I do. She is in field that values skills and creativity over social abilities. Engineers can talk for hours about improving a design, debating and questioning the proposed solutions. It helps to have some social skills, but brilliance is valued more. This might be why the sciences were always appealing to me and others with ASDs.

Sitting at home day after day does get tiring. It isn't people I seek out, though, but a change of scenery. That's why I do leave the house when I can. It isn't because I like dealing with driving (I hate it) or people in a new setting, but my mind craves a chance to see something other than the same walls every day. If I were a bit more financially secure, I'd leave the house a bit more often to focus on my writing elsewhere. That's not seeking out people, but it is trying to end the sense of isolation; home can feel like a trap.

When stressed, I experience an intense desire to flee — to get away from whatever situation is causing the stress. I've left restaurants without ordering, stores without buying items, and even medical appointments when the situation didn't feel right. About the only thing I can't recall leaving suddenly was my classroom when teaching. The good thing about teaching is that you can stop lecturing and alter an assignment to adjust the mood of the room. Next to leaving, establishing some personal control seems to be the best way to reduce stress.

The most stressful moments are those of individual conflict. When I feel threatened or dominated by someone, I do have to leave. I feel physically ill when someone is imposing his or her will on me without listening to or caring about the results. Some people are intimidating by nature. I suppose there are "natural" bullies, people who expect to be in charge at all times. These people aren't inclined to let each person in a room or situation relax and gather their thoughts.

I like low-key people. I need low-key people if I want to function. Anxiety makes me anxious.

Because I feel stress driving in the cities where we live, I have to "escape" from traffic at times. I'll stop half-way to my destination at times and try to gather myself. Other times, I drive out to the edges of the cities to regain composure. There is, unfortunately, no easy way to escape the urban stress — I end up preoccupied with the stress I will experience when I have to return to the cities.

I'm trying to remember you can "escape" without physically leaving a general location. While there are exceptions, like when noise or vibration is the issue, often it is possible to find a quiet space and meditate on nothingness. Quiet, peaceful, calm is a way of fleeing a situation without leaving.

I need a day at the arboretum. Yes, there are people, but you can escape them while concentrating on flowers.

I'm finding I don't build large social networks online, at least not compared to other people I know. My Facebook account occasionally rises above 100 connections, but seldom for more than a few days. My LinkedIn network is relatively small, with no recommendations. The same holds for other social networks such as Yahoo, Google, and LiveJournal. I simply don't randomly add people to my network -- not even acquaintances.

The job hunt reminds me that I should expand these networks. HR departments check these connections, whether we like that reality or not. Being "social" does matter to some academic departments, too, especially if you are applying for "new media" teaching posts.

I suppose I could "request" every classmate from high school through my doctoral studies, but most are not people I remember. Those I do remember, it is often for reasons that leave me disinclined to add the individual. I've never been a social butterfly, and the online world makes that rather obvious.

It's strange to think that people care if I have 20 "friends" or 2000, though I do know evidence exists that this matters in careers like sales and marketing. It somehow seems odd to add people I couldn't possible consider real friends, but I do need to seem more active.

A basic truth is that knowing people leads to opportunities, especially for a freelance writer and consultant. So, I am going to attempt to expand my networks. If you are LinkedIn or some other network, maybe you'd like to "connect" with me. Apparently, it is the modern way to build a Rolodex of contacts.

• LinkedIn: http://www.linkedin.com/in/cswyatt
• Facebook: Autism Bloggers

On another online site, a parent of a "recovering" child with autism pointedly claimed that those of us who are diagnosed with autism spectrum disorders as adults are somehow not genuine. Among the comments posted to Left Brain/Right Brain (http://leftbrainrightbrain.co.uk/):

How does it just dawn on somebody they are on the spectrum??? How do others that are older decide they are on the spectrum??? Schools won't even take real diagnostics so none of the self made Adult Asperger's have any real claim to anything but a way to put down what helped my child to not be on the list of who you're searching for.

The thread, both on LB/RB and as carried on elsewhere, is appalling. A parent actually had the gall to message me that I was not actually disabled, but was instead hiding behind the cover of autism to shill for the government and big medicine. This person argues that anyone speaking, traveling, blogging, and conducting research can't possibly have a "serious" neurological disability.

Stifling my outrage as best I can: tell my mother, who sat with me when I was in intensive care as a toddler that I am not disabled. Tell that to the mother who did physical therapy exercises, moving my limbs to reduce the effects neurological damage. Tell that to the mother who became a teacher's aide in special education. And tell that to my wife, who has stood by me through more than any human should, from medical emergencies to "treatments" gone bad. My wife was treated poorly by me, and I do blame medications and lousy diagnostics. We both had some miserable years due my disabilities. That's one reason I don't like medications or psychologists who see what they want and give horrid advice (as opposed to neurologically-trained psychiatrists).

I'm not hiding behind anything when I speak on issues of education, support, and treatment. I'm not selling any therapies, no promises of cures, no assurances that your child will or will not be a successful adult.

What people like me do is speak out for compassion and understanding of those adults now being diagnosed with neurological / learning disabilities and those children who will become adults with various diagnoses and special needs.

From the editor of Age of Autism:

Why are there stories in the news from around the U.S. on the need for services for adults with autism? What did we do with these people in the past? We would have had to provide for their needs even if they were incorrectly labeled as mentally retarded. Why don't they just go where autistic adults have always gone?

Yes, why don't those of us with neurological difference just slink away into institutions? Why don't we leave the discussion and take our "mild" disabilities with us so Generation Rescue and AoA can save the real autistics?

I am not proud to be disabled. I am humbled by the fact my friends and family, especially my wife and my mother, have made my life possible.

Why are there adults now "suddenly" appearing? Because health care improves, diagnostic instruments change, and even definitions evolve. A century ago we could not test for some forms of cancer. That does not mean those cancers did not kill people -- it means we misdiagnosed the causes of deaths. Just because people once died of "hysteria" and now are properly diagnosed with seizure disorders doesn't mean those seizures magically appeared one day.

There was no diagnosis of "autism" when I was a child. There was no diagnosis of "high-fucntioning" or "Asperger's Syndrome" until the later 1980s and early 1990s, depending on the specific clinician and how reliant he or she was on the DSM criteria vs. other emerging standards for ASD diagnoses.

Yes, I was diagnosed as likely "retarded" and later as suffering "brain trauma" by general physicians, neurologists, and various specialists. The diagnoses changed. I did not go shopping for the label of "autism" and still don't always accept it. It was much easier to think I was "ADD/ADHD" and eccentric.

No, I am not using autism as a cover to attack the views of some people. I do think there are charlatans and snake oil salesmen out there who should be exposed for preying on parents and individuals with special needs, but I don't accuse the parents of lying or having false motives.

There's a lot I want to say, but it is best to realize people are angry, frustrated, and desperate to find someone or something to blame for the challenges they and their children might face. I can't ease that anger. What I can do is ask that people treat adults with disabilities grouped as ASDs with more respect. We don't deserve accusations of dishonesty any more than those concerned parents do.

I'll keep calling the charlatans what they are, because I honestly don't think they are self-deluded. I think they are predators on families. If that means I'm "not really autistic" to some people, so be it.

I might be outraged, but it is at the people and organizations feeding the conspiracy theories and telling the public that people like me are frauds. I simply cannot be angry at the parents -- only saddened that they feel it is okay to lash out at self-advocates.

I have started to compile an online guide to employment for those of us who seem to struggle with the nature of both the job hunt and the workplace. This work in progress is outlined on The Autistic Place at:

http://www.autisticplace.com/node/75 - "Employment and Autism"

This project is going to take at least a couple of weeks to be of any value to others. I do think the final results might be helpful to teachers, parents, support professionals, and people like me. It won't be perfect, but it will be a start for people to have these discussions. Please, if you have any suggestions for content, from additions to changes as I work on this, please e-mail me:

webadmin@autisticplace.com

I also encourage readers of this blog to join me at The Autistic Place:

http://www.autisticplace.com - Information and Education. The Latest News and Blogs on Autism

This is a comment on:
http://freakonomics.blogs.nytimes.com/2010/07/16/autism-a-disease-of-the-rich/

Within all ethnic groups, wealthier parents were more likely to have autistic children, and the pattern held for undiagnosed autistic children as well.

The original paper commented on is at:
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0011551

The title says it all: "Socioeconomic Inequality in the Prevalence of Autism Spectrum Disorder: Evidence from a U.S. Cross-Sectional Study"

I have no idea if this represents the ability of parents to obtain screening, the general age of wealthier parents, or some other factor(s). Also, as this is from PLoS, not a traditional peer-reviewed journal, I'm sure there will be some discussion of the research methods. However, we are seeing that PLoS submissions are improving dramatically -- many researchers are simply avoiding the expensive, proprietary journal process.

Autism Advocate, the monthly magazine of the Autism Society of America, includes a list of "QoL Indicators" (Quality of Life) developed by Dr. Ted Carr. The list of issues ASA seeks to address:

1. School inclusion.
2. Social connections (friendships, relationships).
3. Health and well-being.
4. Academic success.
5. Autonomy.
6. Supported and independent living.
7. Supported and independent employment.
8. Subjective well-being.
9. Recreation and leisure.

I don't quite understand why some of these are separated, since they are closely related. For example, I assume "school inclusion" and "academic success" should be together. When you can have academic success via independent living, part of education is socialization.

I'm also not clear on the "autonomy" point. We are all interdependent in a society, so this must mean the ability to choose what one will or will not do.

Which items on this list are most important to you? Why? What items would you add or remove from this list?

Personally, I think any list over six items is too long. Research has shown we focus best on seven or fewer items. I would merge 1 and 4, drop 5 to emphasize 6 and 7.

Maybe no one has any comments, but it seems like this could help people focus on particular concerns.

Ari and members of ASAN deserve credit for trying to increase awareness of adults with autism and their unique needs. They are voices that should be heard. But, what of adults with autism spectrum disorders who disagree with some dominant ASAN positions? It often felt those were not only unwelcome, but disliked by ASAN members.

Understand: I encourage people to learn about ASAN and know that it is serving an important purpose. If your personality is suited for it, I think ASAN would benefit from gaining more members who can work within an activist organization. I'm definitely more restrained in my mindset. I'm also not aligned with the dominant political views of ASAN members, which was uncomfortable.

Over time, ASAN will evolve and I have great hope that it will develop into an organization with divergent views. Ideally, there will be a realization that we want services, supports, and tolerance. Not all autistic people share the same views on autism.

At the Autism Society of America conference there was a Townhall of People on the Spectrum. (I might have that title incorrect, but the concept is clear.) I won't reveal names or give any direct statements, but I want to explain my personal reaction to some of the thoughts expressed in the Townhall and during ASA. These views reflected some of the statements I read on the ASAN mailing list, before I left the list. I do not know which people at ASA were or were not ASAN members, so do not assume these comments are universal.

1) Autism is a gift, not a disorder.

I do consider myself disabled. I am not "gifted" with autism, palsy, migraines, or social anxiety. Autism is not a blessing, nor is it a minor difference. For me, it is crippling to be so sensitive to stimuli. It is crippling, socially, to not understand people. Just as I cannot deny my right arm is atrophied from a palsy, I cannot deny I have "social atrophy" caused by whatever is different in my wiring. I have talents that might be associated with my neurology, but I'm not sure they outweigh the skills I lack. Everyone feels that way sometimes, I suppose. I dislike being "autistic" on the bad days. (I do not "embrace" my autism, but I also never embraced my other limitations.)

I don't like the word "disorder" in ASD and wish something else were used. "Autism" by itself seems much better than "ASD" since that includes the disorder. I also don't care for the "spectrum" language, but have nothing better to offer. I do think my needs and experiences differ from those of people I have met with classic autism.

2) The families searching for a cure are wrong and selfish.

I cannot say that. I have no idea if it is wrong or not because I'm not a parent. Kanner's autism (classic autism) is horrible. Don't try to argue that the child with a bloody and bruised forehead, bleeding fingers, and missing clumps of hair is simply an example of diversity. I can't imagine the exhaustion the parents feel trying to protect a child engaging in self-injurious behaviors to that extreme. I doubt I'd sleep at night. Who am I to tell parents who spend every waking moment protecting their children that they are wrong to want a cure for these symptoms, at the very least?

Parents seeking a cure are not all selfish. Some are, I am sure, because they want a "normal" child. Others simply fear that their children will be harmed or will harm themselves. These parents don't want a cure simply for reasons of ego -- they want a cure because they wonder what will happen after the child is "alone" in the world. Maybe the fears reflect shortcomings in how we care for people as a society, but the parents have to deal with how life is, not how it should be.

3) Protests have to be loud.

No, they don't. You don't need to destroy books, yell at managers of Toys R Us, or picket against Autism Speaks to be an effective self-advocate. In fact, many forms of loud protest feed the worst stereotypes about autism. Those of us who would rather see teach-ins and peaceful protests are not accepting the way things are, but we have chosen a different path towards change. Riots didn't always help in the 1960s, 70s, or even 80s. I know, because I was in Los Angeles during the Rodney King affair. All the violence did was reinforce ignorant stereotypes and destroy good people. I realize self-advocates aren't calling for riots, but my point is that disruptive behavior seldom changes hearts and minds. I choose a different path.

4) Certain people are traitors.

Actually, I have read and heard worse than "traitor" used for these people with autism who have chosen to work within some organizations or research areas. They are not "traitors" or even "self-loathing" autistics. Someone compared a writer with autism to being a gay evangelical opposed to gay rights or even seeking to cure homosexuality. That's hyperbole, I hope. I think there are people, like myself, who simply do hope that education and cooperation is more helpful over the long-term than shouting and getting angry.

5) The medical establishment (especially the mental health establishment) is our enemy.

Yes, I heard the word "enemy" used. I'm torn on this. There is no doubt that psychology has a history of misuse, and I have written about that. But, I think most people in the medical and mental health professions are well-intentioned and would listen to people with autism if we engaged the professionals in a polite and reasonable manner. If we could put our views into words, explaining there are a variety of views within the autism community and those views deserve respect and consideration, things might improve between clinicians, researchers, and people with autism.

These are simply my views. I want a nice, quiet, logical discussion of how to pursue equal opportunities for individuals with autism. I'm not a radical protester, and I understand that about myself. Anger might be justified, but I cannot function when angry or when around angry people. I don't know why, but strong emotions overwhelm me and lead to a "flight" reaction. I leave tense situations.

Again, I appreciate ASAN and all self-advocates. I simply think it would be best if we all demonstrated more tolerance and understanding. Some people are wrong; I'm not claiming all views are equal or even reasonable. But, education and rational discussion might help correct those people who are mistaken about what it means to be a person with autism.

Let us all learn to embrace not only physical and emotional differences, but also variety of opinion. After all, my views might be incorrect, too.

This post links back to Comet's Corner and I encourage visitors to read the comments there.

One of the important questions we face right now is how to help individuals locate employment. This is a problem across all socioeconomic divisions and for people with or without any special needs. But, what can we do for individuals with ASDs? Is there anything we can do right now?

At the Autism Society of America conference, I was asked several times if I had any career / general employment tips for people with ASDs. While I have some advice, the reality is that in the current high-unemployment environment it is not unusual for gifted college graduates to be unemployed. Things are tough, period.

I do have a presentation I use when talking about job skills and ASDs, but those skills don't matter to people who cannot even get job interviews. So, maybe some of my readers have general job hunting tips. I can offer advice on workplaces and their complexity, but first you have to be in a workplace.

It is no secret that I struggle in social situations, including large conferences. So the question is asked why I attend events like the Autism Society of America National Conference, which is this week in Dallas. The simple answer is that I do learn a lot, both "academically" and socially.

Today I met author and blogger Lisa Jo Rudy. She has a book out on how to have fun -- an essential mental health skill when living with someone diagnosed with autism. To learn more about her books and general science writing, visit her website:

http://www.lisarudy.com

Honestly, I don't think my wife and I take enough time to relax. Much of what we would consider "fun" is still intellectually stimulating. They say children learn significant lessons during "free play" (unstructured time). For me, that unstructured time would be spent meandering museums or gardens. Sometimes, you do need to let your mind wander in order to learn even more.

I always thought I learned a lot at places like Magic Mountain or Disneyland. Seriously. Think about the topics raised at a theme park: gravity, pneumatics, centrifugal / centripetal forces, electricity, and more. The "Animatronics" of Disneyland are enough to inspire days or weeks of research.

Children, especially children with disabilities, need time to explore the world. It can be a challenge, though. Lisa Jo Rudy is the parent of an autistic child. She knows a vacation or even day trip can include meltdowns, timeouts, and the stress all families know. Vacations, I have observed, seldom reduce stress unless you are willing to let the days pass at their own pace. (Too many people over-schedule time off.)

I took time off today. I drove to Arlington to get away from the ASA conference. I had no particular plan. It was nice to see more of the Dallas area. Learning to relax without a plan is a skill I haven't fully developed, but should. Learning to tolerate change is a challenge for me. Yet, I did okay today.

Let's all embrace a little unstructured time.

Before I head off to Dallas for the Autism Society of America National Conference, I thought I'd engage in a bit of shameless self-promotion. I have created an "online brochure" for my public speaking:

http://www.autisticplace.com/csw/index.html

If you want to learn more about me, there is an essay posted about my formal evaluations for autism.

I have been speaking at conferences, university seminars, and organization events for a decade. Most of my public appearances have addressed language arts education, especially children's literature. Speaking on autism issues came about by accident, when instructors asked me to address their graduate seminars at several universities.

This is more about reaching out to audiences than earning much money. I'm not a "superstar" academic; I'm only one adult with an ASD and a few minor physical disabilities. Whatever I have to say only reflects what I have learned through experience and a handful of research projects.

I also want to encourage people to use The Autistic Place site:

http://www.autisticplace.com

Anyone can blog on the site or use the forums. The newest blog entries appear on the front page, so it's a nice way to promote organizations serving the autism community. I also have the site aggregating major blogs and news about autism research.

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.

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.

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.

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.

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.

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.

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.

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.