Anxiety about Changes to the DSM-V

We must bear in mind, then, that there is nothing more difficult and dangerous, or more doubtful of success, than an attempt to introduce a new order of things in any state. N. Machievalli

In my world as a mother of a son with autism, even the smallest of changes can create havoc. Most people are aware that people with autism have difficulty dealing with change. Change has the potential to cause extreme anxiety and outbursts in the individual on the autism spectrum.

My son, now 13, was diagnosed with autism/pervasive developmental disorder not otherwise specified at age 6 under the DSM-IV.

Actually, though if you think of it, change can make anyone nervous. Try to change anything in any institution and see what happens. People will become "concerned" or "worried" and  inevitably this concern will lead to an individual or a group of people opposing the issue.

According to Machievalli, there will always be opposition to change, especially those who feel they have the most to lose if the changes go into effect. In this case, advocates in the autism community are casting a wary eye at the proposed changes to  Diagnostic and Statistic Manual of Mental Disorders, Fourth Edition, (DSM-IV). The main worry is that the changes will make it more difficult for some children to receive special education and/or disability services. (There are other worries/controversies too as outlined in this post.)

This concern was highlighted in a New York Times article that was published January 20, 2012. The title alone is enough to to induce panic in the calmest of all individuals. What advocate wouldn't be concerned when reading the headline "New Definition of Autism Will Exclude Many, Study Suggests"?

Whether or not the worry is warranted, the study and related New York Times article has created a media avalanche and prompted a  press release from the American Psychiatric Association (APA), who publishes the DSM-IV. According to the release, "The proposal by the DSM-5 Neurodevelopmental Work Group recommends a a new category called autism spectrum disorder which would incorporate several previously separate diagnoses, including autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified."

The new guidelines are currently being field tested and the decision, according to the APA, is months away. The new edition will be published in 2013. Supporters believe the changed guidelines for autism will lead to more accurate diagnosis and thus a better designed treatment plan for newly diagnosed individuals. 

However, due to concern about what the outcomes of the new guidelines will be, it is likely there are far more opponents than supporters of the changes to the guidelines for autism. Before taking sides, it is important to get the basic facts first if one has not done so already. The Washington Post published an article which quotes a representative from Autism Speaks extensively. I've scanned through several including this one and have found that out of all the articles out there about this topic, the Washington Post has the best basic question and answer article.

That said, it will be a long time before we see whether or not there is truly anything to worry about. It could be that the supporters are correct in their assumption that this change will actually benefit individuals on the spectrum. In the meantime, major autism advocacy groups like Autism Speaks and Autism Society are acting as watch dogs. As for the rest of us, according to the APA, they will be accepting comments for a third and final round in Spring 2012. The specific date was not listed. The date will most likely be posted at the this site in the near future.

Intelligence Quotient Tests and Autism

The headline of a recent Scientific American article grabbed my attention. When I read the words The Hidden Potential of Autistic Kids I thought 'Yes! The professionals are finally on the right track!' In short the article discusses how the tests overestimate disability in people with Autism Spectrum Disorder while they fail to acknowledge abilities that people with autism commonly posses (tasks that involve pattern recognition, logical reasoning and picking out irregularities in data or arguments).

Many of us parents have known for years that the tests psychologists use to assess people on the spectrum are flawed. I know my own son could not answer questions unless they were phrased in a specific way. I remember sitting in with my son when he was being tested at age four and a half. I tried to rephrase a question for him in a way I knew he could answer and was immediately informed by the psychologist I could not intervene.

The author also notes that the current belief that the majority of individuals with autism are cognitively impaired is wrong. The statistic of 70 to 80 percent of the autistic population being cognitively impaired appalled me, as a parent, because I thought that number was too high because many of the children I had met in my autism community were quite bright. I figured it was probably because the tests were not designed well enough to assess individuals with autism. I am grateful that a researcher agreed. Here is an excerpt from the article.

"Researchers have long considered the majority of those affected by autism to be mentally retarded. Although the numbers cited vary, they generally fall between 70 to 80 percent of the affected population. But when Meredyth Edelson, A researcher at Willamette University, went looking for the source of those statistics, she was surprised that you could not find anything conclusive. Many of the conclusions were based on intelligence tests that tend to overestimate disability in autistic people. Our knowledge is based on pretty bad data," she says.

The one flaw of this article is that readers that are part of the autism community might be offended because the author used the R-word (retardation) instead of writing "cognitively impaired" and did not use people first language ("autistic" instead of "person with autism.") Putting the political incorrectness aside, I am grateful that the author emphasizes that testing should put a higher value on the abilities and that certain factors (such as verbal processing) should be considered when an individual with autism is tested.

Faces of Autism

Photo: C, the handsome son of Casdok.                       Faces. The beautiful faces of autism. There are many out there in this world, and will be many more. My friend Casdok, the blogger of Mother of Shrek started a blog three years ago so that everyone could recognize the beauty of autism. I had a small part in it, by helping her choose among a short list of possible titles. We thought that the Faces of Autism best captured the spirit of the blog.

Recently, Casdok decided to give up her role as administrator and offered me the opportunity to keep this blog going. Obviously, I said yes. As the new administrator, I am hoping to publish at least one post a week, on Wednesday if possible.

The blog is simple and wonderful. Every post features a photograph of an adult or child with autism with a brief description of the person. The identities of the children are protected as much as possible, but the essence of who they are are still captured in the post.

To submit, please send a photograph and a brief description of the person and a notation of the country where he or she lives (exact location not necessary). Email your submission to me at julielorenzen [at] hotmail [dot] com. Links the blog of a parent or individual are accepted, but one doesn't not need to have a blog to submit. Click here to see an example of what is publised at Faces of Autism. If you have already submitted to this site, but haven't done so for a year or more, please feel free to submit an updated photo and information. I hope to hear from many of you soon. Thank you!

Explaining Respect to Children with Autism

I love this video from you tube. Counselor Rob explains respect beautifully. He uses pictures, an expressive voice, and affirmation to explain to this somewhat abstract social concept.  He covers respecting places, things and people. Counselor Rob's speaking style is also perfect for children on the spectrum who have some trouble with receptive speech. He speaks slowly and clearly.

My son, C1, disliked Aretha Frankilin's song Respect, which I tried first when trying to teach him about respect. However, he liked and responded well to this video. He had no concept of what respect was until we covered it in home school last Spring. We just did a review this Fall after we got a new printer that he had trouble leaving alone. He is also nicer to one of his little brother's friends now too.

Thank you Counselor Rob!!!

Intrinsic versus Extrinsic Motivation

The other day while homeschooling my thirteen-year-old son with autism. I decided to cover the subject area of music by playing a little Mozart. I thought this was a good idea. After all, we had success with Beethoven as he can now identify a few of his works. Well, the Mozart idea didn't go over so well. Within seconds he was at our family computer putting in his own choice into the Google search box.

He typed out 'fight songs.' He wanted to listen to university fight songs like the University of Michigan's "Hail to the Victors." '

Ok, so you want to listen to fight songs.' I thought. So be it. So, he spent thirty minutes to an hour looking up and listening to various university fight songs.

I had no problem with it. His choice led to a discussion of marching bands and instruments. There are marching bands in high schools. They are known to play fight songs.

So, what does this have to do with Intrinsic and Extrinsic motivation? According to a Wikipedia article on the topic of motivation, intrinsic motivation is motivation driven by an interest or enjoyment in a task or subject. If someone is intrinsically motivated it means he or she really wants to do something. Something like, say, study fight songs.

In contrast, extrinsic motivation comes from outside forces like educators, cheering crowds, employers, etc. Rewards, punishments, and good grades are all examples of extrinsic motivation.
This type of motivation is common in the public schools where topics of study are chosen for the students.

My son is homeschooling with me in part because extrinsic motivation didn't work. Rewards? He had no interest in them. Good Grades? I don't think he cared what his report card said. Punishment? Well, he received plenty time outs and suspensions, but they didn't increase his desire to learn. In fact, he might have learned that if he acted out, he got to go home.

OK, back to Mozart. Obviously he had no interest and was not intrinsically motivated to learn Mozart. I could have extrinsically motivated him (or at least tried) to learn all of Mozart's musical works. I do use extrinsic motivation such as grounding him from the computer or worse his Nintendo 3Ds.

Yes, extrinsic motivation does work at home. However, I'd rather limit it use that, and call on the that strategy (if necessary) when covering a topic that he needs to know. Like how to add loose change. He'll need that skill in life. Mozart? Well, it would be nice if he could identify a few works, but I have to keep us moving forward.

I want my son to enjoy learning again. So fight songs, it is. It took very little effort on my part to get him to listen to the half a dozen or so songs he researched. He's happy. I'm happy. He'll remember these songs for life. All is not lost.

Advocating for Educational Rights: Eight Tips

This is just a mini-post, but one that I hope will help parents who have children with autism or aother special needs. Recently I came across a blog that provided eight tips for advocating for a child's educational rights. These are great.

Bonus tip: Make sure you at least know of a lawyer who advocates for the needs of children with disabilities. Ideally, you probably should have one on speed dial, as the post I linked to suggests. All I can say, is that finding a lawyer at the top of my to do list. Just in case...

Brain Research and Special Education

I just read an article about how brain research can benefit special education and thought that I would share it here. Please note that this article is more about possibilities than current realities. The best part about this article is that the author notes a number of promising ways of how brain research (or the results of such research) can help students with disabilities.

These ways include a better understanding of dyslexia, autism, cognitive impairments, etc. Also, if scientists can improve brain imaging so that it can identify certain "bio markers), this imaging could help ensure that most students with disabilities receive early intervention and could also help teachers more efficiently choose ways to help each individual in their classrooms.

The usual words of caution were noted in this article. Stigma was mentioned as well as the the need for more more research on the topic. The only things that bothers me is that there is a need of research to show that brain research will benefit education. It seems like it should be common sense that it would be easier to help struggling students as a result of a better understanding of the human brain (especially an individual's brain). How can anyone argue with that?

Anyway, as one educator noted, "we are at the beginning of a revolution in human understanding." As for me, I can imagine looking back ten years from now and noting all the positive changes as a result of linking brain research to the area of special education. Let's hope the efforts continue.