Tuesday, October 29, 2013

Plans for Book Update: Spectrum of Relationship

Since I first uploaded the ePub for A Spectrum of Relationships in 2011, several thousand copies have been purchased. Yet, there are only two reviews, and one mentions grammar errors that my wife and I cannot locate, despite rereading the text multiple times. I realize that few people review books, and even fewer offer valuable suggestions, but I do wonder why so few readers respond to the book. Only a handful of people have written to me about the book, and most of those emails are short "Thank you" notes without suggestions or ideas.

Not that I don't like a thank you, but I want to improve the book. The text should inform, entertain, and lead to more ideas. Some writers might prefer a lack of engagement with readers, but I want to learn from readers and offer them something better with each revision to a text.

If you have purchased A Spectrum of Relationships, let me know your impressions:
  • What did you like about the book, and how could I do "more" of what you liked?
  • What was missing from the book, and how could I add that content?
  • What could make the book better, in general?
  • Are there questions I don't answer or topics I fail to address?
If you own a copy via Amazon, new revisions upload to your Kindle or Kindle app for free. That means the book gets better and better, thanks to my readers. But only if readers let me know what needs to improve and why.

There is an update planned for 2014, which should be free again to owners of the text. I'm working with an autism support specialist to include more "how-to" information for a wider audience.

A Spectrum of Relationships is only $0.99. It isn't a masterpiece, but I intend to make it as good as I can. I want the book to be a "conversation" with my blog readers and buyers of the text.
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Thursday, October 24, 2013

Life, Death, and Getting Caught Up...

Last week my grandfather was abruptly hospitalized. He died Wednesday night, at the age of 93. I haven't processed this loss, in part because we now live so far away that I haven't seen family in a few years. Moving was a good thing for us, but it does weaken links to family and friends left behind.

I don't want to post much about my grandfather. He was good man and I couldn't write anything adequate. He was the quiet calm in my father's family. Loyal, honest, and caring. Nothing meant more to him than family — and you didn't need to be related by blood to be in his family.

It has been an exhausting few weeks and a tiring year. I'm sorry that I haven't been able to keep the blogs updated.

This year, we've experienced a few difficult moments. My wife had her first-ever minor surgeries (plural, because we never do anything half-way), our little Muttly died of cancer (third cat to die of cancer in the two years we've lived here), I switched jobs, and there have been other stressors.

In the coming weeks, I'll be checking items off the to-do list and trying to return to a predictable, comfortable, schedule.

Tuesday, October 8, 2013

Higher Education, Supports, and the DSM

I received a question via email about a statement in a 2011 blog post:
from Autism and Higher-Education Rights (May 2011)
Legal Implications of the DSM-V Revisions

Some disability services expect a sudden and rapid expansion of the number of students qualified for services when the new Diagnostic and Statistical Manual of the APA is published. The DSM-V is not finalized and its affects are still being debated by mental health professionals.
  • Regulatory agencies, including the Dept. of Education, use the DSM-IV to define disabilities.
  • DSM-V updates "Autism Spectrum Disorders" — potentially expanding the number of individuals diagnosed.
  • Universities must accept DSM-V criteria or risk losing federal funding.
While the DSM-V is not perfect, and many of scholars remain critical of its approach, courts and regulators tend to defer to the DSM as a minimum guide for diagnoses. A college or university can offer greater flexibility, but the DSM is likely to serve as a baseline in any challenge to the accommodations provided — or not provided — by an institution.

It is best for institutions receiving any federal supports, to err on the side of caution. Take no chances, basically, since the implications of a ruling against a university include the loss of federal funding. IDEA experiences reveal that regulators and courts do refer to the DSM, whatever the current edition might be.

A university might prefer the DSM-IV or another formalized diagnostic criteria for an official diagnosis of autism. This preference is accepted under the ADA, which grants colleges and universities the ability to determine what is an impairment requiring special accommodations. The K-12 public education system is less likely to adhere to the DSM because the vague language of the IDEA controls special education eligibility. However, regulators do consider supports received in the past when deciding if a university is meeting the needs of student. The DSM cannot be ignored; it is best to be flexible and consider the DSM a minimum standard.
In a cascade effect, if a student receives supports in K-12 classes, he or she is likely to argue that those same supports are necessary and proper in higher education. In some instances, universities must deny such requests because they would alter the nature of a degree or professional certification. But, most administrators would rather not risk challenging requests for supports. If a student has documentation of a disability, especially if the DSM is invoked, everything possible is done to accommodate and support the student to avoid compliance hearings or legal proceedings.

While the DSM is not a legal document, it is used by regulators at the state and federal levels to help guide their decisions. Courts also consult the DSM, since in theory it represents the current knowledge of mental health experts. Because regulators, judges, lawyers, and others involved in legal compliance are not psychologists or psychiatrists, they turn to the DSM for insights. In a legal proceeding, a mental health expert testifying to the accuracy of a diagnosis as it relates to support eligibility will likely invoke the DSM, among other diagnostic instruments.

The current edition of the DSM carries significant weight, whether it should or not. That means the DSM-5, as the new and improved DSM, cannot be ignored by schools, including institutions of higher learning. (The DSM-5 was published May 27, 2013, and is just shy of 1000 pages. The official name is now the DSM-5, not the DSM-V, as the APA has dropped the Roman numeral naming.)

Again, the DSM serves only as a basis for rulings and regulator enforcement decisions. It is not definitive. Many K-12 systems embrace broader definitions of autism, and universities are following this trend. The motivation is simple: avoid losing state and federal funding. If a student provides documentation of a disability and that documentation mentions the DSM, do not deny accommodations. Challenging a mental health professional providing a DSM-based diagnosis is a losing proposition.
In their review of published case law addressing the eligibility of students with autism for special education, Fogt and her colleagues observed that "adjudicative decision makers almost never use the DSM-IV-TR criteria exclusively or primarily for determining whether the child is eligible as autistic" (p. 211). Although DSM-IV-TR criteria were considered in just over half of the cases reviewed, all but one case acknowledged IDEA as "controlling authority" (p. 211). Thus, when it comes to special education, it is state and federal education codes and regulations (not DSM-IV-TR) that drive eligibility decisions. (Brook, 2006, p. 8)
I hope this clarifies how the DSM shapes policy. It is that influential. While it is not an exclusive diagnostic instrument, when it is invoked in hearings there had better be a really, really good reason for not providing academic accommodations or supports to the student in question. In general, courts and regulators actually have more liberal and flexible understandings of autism than what the DSM encompasses.

This academic year, I have been asked for my opinions during accommodation proceedings at two different universities. My advice is to be flexible because a judge or jury is more likely to empathize with a student than an institution. That might not always be the correct approach, but that is something administrators must consider.
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Tuesday, October 1, 2013

How autistic are you?

After I speak to groups, one of the common questions, often in the form of an accusation or something, is, "Just how autistic are you? You seem so normal." Yes, seeming "normal" is how one survives and earns a living. Then again, be "abnormal" enough and you can also earn a living, but that's not the path I've decided to follow.

On most days, probably 95 or more out of 100, I convince myself that I not only appear normal but that I am "normal" — or as normal as anyone else I know. But, on the difficult days or even during the difficult hours, I know I'm different.

Recently, a colleague posted links to Facebook for two online "personality tests" that supposedly measure autistic traits. I've taken both before, and I recall the ASQ score was 42. But, I was curious and answered the questionnaires again.

If you believe such things (and I question their validity), the answer to how autistic I am… very.

As for the ASQ, my score has risen from 42 to 44. I suppose am more of a loner than I was two or three years ago. After my last employment experience, that's not surprising. Thankfully, I love my new job and I am increasingly engaged with coworkers and my students.

I realize I could post various reports from experts and people would still question if the "Autistic Me" is written by an authentic autistic person. The answer is simple: the blog is written by me. Whatever that means.
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