Explaining Autism in 5 Minutes

May 31, 2010 by 1 Comment

I’ve just recently finished a graduate level communications class for which we had to present two 5-minute presentations. My first talk was about differences between the U.S. culture and other cultures in “smiling rates” and the understanding of when smiling is appropriate. I’ve decided to make my second speech about autism. The big stumbling block was time limit — how do you explain what autism is in less than five minutes? When I timed my first draft, it was 15 minutes long. I had to cut 2/3 of it!

I finally narrowed it down to what I thought the most important points were. Here it is, as I presented it, together with the slides. It’s hugely simplistic, I’m afraid.

Good evening.

You might remember my last presentation about foreigners who might behave differently than what you’re used to and expect.

Today I would like to talk to you about people who are a bit like foreigners in their own country.

 

 

Just a brief audience analysis – how many of you have heard the following terms: autism, Asperger’s Disorder? How many of you feel you could explain what these terms mean? (at that point only TWO out of fifteen people raised their hand)



 

 

Both Autistic Disorder and Asperger’s Disorder are part of so called Autism Spectrum Disorders or ASD, which also includes PDD-NOS – Pervasive Developmental Disorder – Not Otherwise Specified, also called atypical autism, which is the diagnosis that my eight-year-old received several years ago.


 

Autistic Disorder was described several decades ago, in 1943. Asperger’s Disorder was first described in 1944.

 

 

 

 

Asperger’s Disorder is also frequently called “Asperger Syndrome” (with or without apostrophe s), or simply AS. By the way, you might also hear people with Asperger referring to themselves as “Aspies.”

 

 

 

So both the Autistic Disorder and Asperger’s Disorder were described in 1940s – quite a while ago. But they weren’t recognized as a disorder until fairly recently. Only in 1994, just fifteen years ago, ASD was included in the DSM-IV, the fourth edition of the Diagnostic and Statistical Manual used by psychiatrists to diagnose mental illness.

 

 

Because autism is seen as a spectrum disorder, one person diagnosed with ASD (including PDD-NOS and Asperger’s) might be completely different than another. On one end of the spectrum you find have people who are severely affected – the might have no language and very limited or no ability to interact with others, at least not without the help of assistive technology. At the other end of the spectrum you might find people who have well developed language and average to superior intelligence.

 

So what is autism? It is a mental, developmental, or neurological disorder. Basically autism is a result of a different or atypical development of the brain.

To receive a diagnosis of autism a person needs to meet several diagnostic criteria. The full list is very long, but it boils down to three things: impairment in social interaction and communication, and repetitive and stereotyped patterns of behavior, interests, and activities.

Absent from the current diagnostic criteria are sensory issues that are quite common among people on the spectrum.

Let’s talk about social interaction first. People on the spectrum might have very limited eye contact, and as a result might be seen as shy, not interested, or hiding something. But for instance my son seems to be afraid of looking at eyes. He actually used to freak out when he saw a toy with abnormally large eyes.

People on the spectrum also have a hard time reading nonverbal clues — the tone of voice, facial expressions and body postures and gestures. Because of that might not realize, sometimes have no idea, when someone is insincere, or bored, or angry. That might lead to huge trouble in social situations. People on the spectrum are frequently laughed at and bullied, and also tricked or cheated.

The impairment in communication in people on the “light” end of the spectrum might manifest itself in their use and understanding of language. Aspies frequently do not understand the need for to “chit chat” or do “small talk” and are often not able to do that. On the other hand, they might have a tendency to go on and on and on about a topic that they passionately care about.

People on the spectrum also tend to be very direct and honest and often unintentionally appear rude because of that directness.

Also, their understanding of language, especially the semantics and pragmatics, is frequently impaired as well. They are frequently unable to read between the lines – understand the subtext, innuendo, or sarcasm.

All of the above issues can lead to huge problems with relationships. And it’s a myth that people on the autism spectrum don’t care about relationships. They do, but because autistic brains are simply wired differently, people on the autism spectrum have a really hard time figuring out how to make and keep friends and how to fit in, and do not understand why they are being excluded. They are expected “to be normal” – to take words from the title of a book. (By the way, Pretending to Be Normal: Living With Asperger’s Syndrome is a wonderful book. I highly recommend it for young adults (end of high school, college, and just out of college) as an “uplifting” story that things should get better in time)

But without specialized behavioral and communication skills instruction, people on the autism spectrum simply don’t know how to be “normal,” because autism is a neurological disability that prevents those affected from understanding the unwritten rules of social relationships, to use words from a title of another excellent book about autism. (The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism)

 

 

Thank you for listening. Any questions?

Filed Under: "Insider's" view, Asperger Syndrome, Autism, Communication, PDD-NOS, Personal Information

Connection between levels of fetal testosterone and autistic traits

January 28, 2009 by Leave a Comment

I wanted to title this post “Would you want to know if your child might be autistic?” but after reading in the Guardian Prof. Simon Baron-Cohen’s response article titled “Our research was not about prenatal screening for autism,” I have decided to give my post a different, more neutral title, and closer to the title of the original research article.

I am talking here about a discussion in the Guardian spurred by Professor Simon Baron-Cohen’s research published in the February 2009 issue of the British Journal of Psychology, titled “Fetal testosterone and autistic traits.”

On January 12, 2009, the Guardian published a front-page article “New research brings autism screening closer to reality,”by Sarah Boseley (health editor), which was accompanied by a double-page spread inside the paper titled “Disorder linked to high levels of testosterone in womb”  (also by Sarah Boseley).

The articles resulted in several comments. The same day, January 12, 2009, Michael Fitzpatrick published “Toxic treatments for autistic children” with a sub-headline “Worrying about antenatal testing is premature — there are dangerous procedures being performed on children now.”

Then on January 14, Anya Ustaszewski published “I don’t want to be ‘cured’ of autism, thanks” and Marcel Berlins published “Newton and Einstein may have been autistic. But is their genius an argument against a screening test?“(which generated 113 comments by the time the comments were closed).

Finally, on January 20, 2009, the Guardian published a response from Simon Baron-Cohen I mentioned above — “Our research was not about prenatal screening for autism,” with a sub-headline “We merely aimed to understand what causes differences in autistic traits” in which he slams the January 12, 2009 articles’ headlines and captions as “inaccurate.”

Baron-Cohen explains

The new research was not about autism screening; the new research has not discovered that a high level of testosterone in prenatal tests is an indicator of autism; autism spectrum disorder has not been linked to high levels of testosterone in the womb; and tests (of autism) in the womb do not allow termination of pregnancies.
[...]
The Guardian was reporting on our new study in the British Journal of Psychology that found a correlation between levels of foetal testosterone (FT) and the number of autistic traits a child shows at the age of eight. The study was not about prenatal screening for autism, and indeed did not even test children with autism.

Interestingly, before Sarah Boseley’s articles appeared in the Guardian, on January 7, 2009 the paper published “A prenatal test for autism would deprive the world of future geniuses,” by James Randerson, referring to Simon Baron-Cohen’s article on the BBC web site”Autism test ‘could hit maths skills’” in which he says

Research is not yet at the stage where autism can be detected prenatally using a biological test [...] But assuming such a test is developed, we would be wise to think ahead as to how such a test would be used.

I must say that while I find Baron-Cohen’s research fascinating, and liked his Guardian article and like the tone of this article overall as well, I have a huge problem with a statement

If reducing the testosterone in a foetus helped that baby’s future social development, we would all be delighted.

Frankly, I for one would not be delighted if people started meddling with babies’ “future social development” by manipulating fetal testosterone levels or in any other way. I don’t think we should be getting into the business of controlling future generations’ personalities. Do you think we should?

(Added January 28, 2009 — I found a blog, alisonleary.com, (which seems to have closed since then) with an entry on the same subject — “Testosterone Levels Linked to Autistic Traits,” which provides a link to the Autism Research Centre at Cambridge University, which in turn provides a link to the original, 22-page, article “Fetal testosterone and autistic traits” published in the British Journal of Psychology.)

Filed Under: Asperger Syndrome, Autism, Intelligence, PDD-NOS, Studies and Trials, Therapy and Treatment

Engineers, Hips, and Autism

January 23, 2009 by 5 Comments

The headline “Men who don’t find curvy women attractive ‘could father children with autism‘” sounds just too weird to pass up. I found it through Google alert on a rather curious blog “What Sorts of People.”

The entry does not comment on the title, just refers people to an article in the Daily Mail Reporter, published on January 8, 2009, with the same title as the blog entry.

A different blog, Feminist Philosophers, also mentioning the article, quotes

“Studies show that the waist-to-hip ratio of 70 per cent is what the majority of men find most attractive because it correlates strongly with good health and fertility”

and questions the “because.”

Knowing how the media have the tendency to distort the conclusions of scientific studies to make them more sensational (see, for example, the entry “Parental psychiatric disorders and children with autism“ from May 9, 2008), I went first to the actual press release, which is titled “Who we find attractive could have implications for the prevalence of autism, say researchers.”

I must say I agree with the Feminist Philosophers poster’s surprise at making an assumption that who we find attractive is strictly correlated to who we actually marry (or with whom we have children), which is what the authors of the study seem to imply. (Otherwise, they should have gone straight for assessing “the actual dimensions of parents of children with autism.”)

But I wanted more, so I found the actual article, published in the Journal of Autism and Developmental Disorders (J Autism Dev Disord) published by Springer.

The article, written by Drs Mark Brosnan and Ian Walker, both from the Department of Psychology at the University of Bath, is titled “A Preliminary Investigation into the Potential Role of Waist Hip Ratio (WHR) Preference within the Assortative Mating Hypothesis of Autistic Spectrum Disorders,” and was published in the January 2009 issue of the journal.

It is dense and somewhat tough to understand to a not-even-close-to-being-a-psychology-dr like me, but once I read it a couple of times I actually found it fascinating, because of a few points the authors raise that are not mentioned either in the Daily Mail article, or in the press release.

If I understand it correctly (and I must say I’m not sure I do), the whole point starts with assuming that there is a connection between testosterone levels in mothers and the fact that

“ASD affects somewhere between four and nine times as many males as females.”

because

“ASD’s male predominance has led to suggestions that autistic traits might be influenced by prenatal androgens, as prenatal testosterone exposure has been found to correlate with abilities associated with the triad of impairments.”

Here the article refers to three scientific articles examining androgens, fetal testosterone levels, and autistic traits.

(I had to look up what “androgens” means. Apparently androgens “stimulate or control the development and maintenance of masculine characteristics,” and the “most well-known androgen is testosterone.”)

So what I think the article says is that high or higher than typical levels of testosterone in a woman’s body while she’s pregnant might be one of the factors that could cause autism.

The second point is that

“testosterone levels in women are visibly signaled by waist-to-hip ratio (WHR: waist circumference divided by hip circumference) because testosterone causes the accumulation of fat cells around the waist.” (The typical range apparently is around 0.7-0.8.)

The hypothesis is then framed as follows

“[I]f some men were found to show a preference for higher-than-average-WHR mates, this would encourage greater prenatal testosterone exposure for these men’s offspring. Critically, if this preference were seen more than average in men with a genetic predisposition towards having children with ASD, this would make the incidence of ASD higher in a population than we would otherwise expect. Their genetic predisposition to ASD could potentially interact with the maternal genetic predisposition (passed from mother to child).”

Now, no matter how you look at it, to me statements like “a man attracted to higher-than-average waist-to-hip ratio women is likely to have a higher-than-average prenatal testosterone exposure for their offspring” do assume that the man in question will actually have “offspring” with that “higher-than-average WHR ratio” woman that he’s attracted to. I don’t think that’s necessarily true, but let’s say it is.

So what I think the researchers are saying is that just because you are a “boxy” (higher than average WHR) woman does not mean you will have a child with autism. But if you have children with a man who has a “broader autistic phenotype,” then the chance that your child with have autism is higher than average.

And now comes the interesting part, not mentioned in the Daily Mail or the press release – the “broader autistic phenotype” is apparently tied (if not equal) to a man’s “higher systemizing skills.”

Drs Brosnan and Walker refer to studies from a couple of years ago showing that

“fathers of children with ASD have been found to be overly represented within Science/Engineering disciplines”

and that there is an

“evidence associating children with autisms’ familiar over-representation in highly systemizing activities (such as engineering or mathematics).”

In plain words – the way I understand it – autism spectrum seems to run in families of engineers and other mathematically oriented professions.

(The article does not mention computer programmers or coders but I bet they are part of the group as well. I actually would expand it to include most academics overall; I’ve been working with academics for nearly fifteen years, I’ve seen some interesting “phenotypes” quite worthy of extended studies.)

That reminds me of the comment my son’s neuropsychologist made when I responded “it’s not the end of the world” when she confirmed the diagnosis of PDD-NOS – She said “Of course not! Just go and take a walk around the MIT campus!” (see the “Yes, it is PDD-NOS after all!” entry on May 2, 2008)

Laughing out loud, the Massachusetts Institute of Technology is probably one of the best places in the world to find a guy with “highly systemizing skills.” By the way, I went once to a ballroom dance class at MIT – it’s heaven for girls, they get to dance all the time, and it’s the guys who have to wait for a turn! (And no, it’s not where I met my husband, but he is good at systemizing. And no, I will not publicize my WHR.)

So again, a “boxy” woman will not necessarily have a child with autism just because she’s less curvy, and a scientist will not necessarily have a child with autism because he’s good at math, but if the two have children, then the chance that their first born male child will have autism is greater than average, especially if the guy was not a first-born himself.

(Oh, yeah – here are a couple more interesting nuggets not mentioned in the press release or the article – Apparently “engineers have relatively more sons than daughters.” Also, “the risk of ASD is higher in first-borns.” And there also seems to be a pattern “of children with ASD being firstborns to fathers who were not firstborn themselves.”)

What about “boxy” women who are scientists marrying their fellow scientist colleagues? I’m sure someone will study that soon (if they haven’t already).

And what I’d like to know is whether all women in the photographs used in the study, those with average WHR and those with higher than average, were equally well endowed in the “bosom department.” Yeah, I know guys look at the “WHR” but I think those measurements also play a big role (otherwise there wouldn’t be such a big market for implants). Although naturally big err.. cup size, probably has something to do with testosterone and estrogen levels as well, so in the end it probably doesn’t matter.

Filed Under: Asperger Syndrome, Autism, PDD-NOS, Personal Information, Studies and Trials

Biomedical Treatments for Autism

October 8, 2008 by Leave a Comment

Saturday, November 1, and Sunday, November 2, 2008 there will be a conference in Weston, Massachusetts titled “Successful Inclusion in School & Community” organized by Autism Conferences of America.

It looks interesting and I would like to see “Learning Social Skills Through Play: Life’s Most Important Skill Made Fun!” by Rick Clemens, MA, and would love to see “Biomedical Treatments for Autism from A to Zinc” by Nancy O’Hara, MD. Unfortunately $95 to listen to two lecture is a bit steep for me, so I’ll have to pass.

However, the conference web site also includes a pdf of an article titled “Summary of Biomedical Treatments for Autism” written by James B. Adams, Ph.D., which sounds very interesting. James B. Adams is Full Professor in the Department of Chemical and Materials Engineering at Arizona State University, and Director of the Autism/Asperger’s Research Program.

The Autism/Asperger’s Research Program site includes a pdf of another publication – “Pilot Study of a Moderate Dose Multivitamin/Mineral Supplement for Children with Autistic Spectrum Disorder,” by James B. Adams, Ph.D. and Charles Holloway, B.S. published in The Journal of Alternative and Complementary Medicine in 2004.

By the way, The Journal of Alternative and Complementary Medicine is the official journal of the International Society for Complementary Medicine Research and the Society for Acupuncture Research. It is a peer-reviewed journal, it has an editorial board, and the publisher’s web page on Manuscript Submission says “A primary goal of this international peer-reviewed journal is the establishment of rigorous and appropriate research methodologies.” The Editor-in-Chief is Kim A. Jobst, MA, DM, MRCP, MFHom, DipAc, and a Visiting Professor in Healthcare & Integrated Medicine at Oxford Brookes University. 

Now, the developmental pediatrician that tracks my son says the studies so far do not prove whether it’s the nutritional deficiencies that cause autism or it’s the autism that causes nutritional deficiencies. But she did give us a referral to see a nutritionist.

In the meantime, I wonder whether I should ditch the regular vitamins for two months and try to enroll our son in the National Vitamin/Mineral Study for Children & Adults with Autism at the ASU’s Autism/Asperger’s Research Program to see what happens. Of course, there’s the risk that he’d be on the placebo and we personally would not benefit from this study.

Filed Under: Asperger Syndrome, Autism, PDD-NOS, Studies and Trials, Therapy and Treatment

No Autistics Allowed? (the story of Alex Barton)

June 5, 2008 by Leave a Comment

Everyone has already heard this unbelievable story – a teacher in a kindergarten classroom “led” her pupils “to vote […] out of class” a five-year-old being evaluated for Asperger Syndrome.

The first coverage of this story (or one of the first) appeared on TCPalm.com (May 23, 2008 “St. Lucie teacher has students vote on whether 5-year-old can stay in class” by Colleen Wixon).

As the newspaper reports “each classmate was allowed to say what they didn’t like about […] Alex” and “by a 14 to 2 margin, the class voted him out of the class.” Alex’s classmates said that he was “disgusting” and “annoying.” “The teacher then allegedly asked the boy where he would go now that the class doesn’t like him the boy replied, ‘to the office?’ the teacher returned with ‘they do not want you there’ then the 5 year old said ‘home’ the teacher said your mom is at work you can’t go home. He finally said that he would go to the nurse and the teacher sent him out of the classroom to the office where he stayed for the remainder of the day.” (treasurecoast.com, Friday, May 23 “Austistic 5 year old allegedly physically, mentally abused by Port St. Lucie School Teacher”)

Melissa Barton, Alex’s mom was interviewed by CBS and the “raw video” of this thirteen-minute interview is available online.

Wendy Portillo, Alex’s Teacher, has been “reassigned” to another position while the school board is investigating the incident to decide what to do next. She has not commented on the incident to the media, per the advice or order of the school officials, as I understand.

TCPalm.com has a page with links to all articles on their site covering this story, including editorials, some in defense of Wendy Portillo.

The May 29, 2008 article “Police report reveals teacher’s side of incident in which boy ‘voted’ out of Port St. Lucie class”, by Coleen Wixon has a link to a pdf file of the narrative portion of the police incident report which so far is the only place where one can read Wendy Portillo’s side of the story.

What surprised me from this report is that she filled out a discipline referral for Alex for “pushing up the table with his feet.” His classmates’ work was sliding off the table as a result, and for that he was sent to the principal’s office.

I am also floored by Portillo’s statements in her testimony that “the students in class were all her priority and she would protect them like ‘a bear defending her cubs’” that “she would not let them hurt anyone and she would not let anyone hurt them.” It is quite obvious she did not consider Alex as one of the cubs. I bet Alex will remember for the rest of his life the way she hurt him and humiliated him in front of his classmates. (Just as I still remember my second grade math teacher hitting me and my classmates on the palm with a ruler, or my first grade PE teacher calling me antisocial in front of the whole class, and that was a really long time ago.)

Portillo also claimed “she felt if [Alex] heard from his classmates how his behavior affected them that it would make a bigger difference to him, rather than just hearing it from adults.” That’s why she “polled the class to see how [Alex’s] peers felt about his return.” And that comes from a teacher who supposedly is trained and certified to teach special needs children.

I don’t know who trained Wendy Portillo in teaching special needs children and what special needs were covered in her training but she sure doesn’t know squat about autism.

I am shocked that discrimination like this comes from a person who is a minority and I’m pretty sure has been discriminated against herself and should know what it feels like to be criticized for just being who you are and for something you have no control over.

Alex’s classmates telling him what they don’t like about his behavior will not change his behavior because he has no control over it, just as she has no control over the color of her skin. How would she feel like if her peers told her they don’t want her as part of the teaching faculty because of her race? I’m sure she’d be outraged, as she well should be. Luckily, even though there’s still plenty of “below the surface” racial discrimination in this country (which people feel very uncomfortable talking or writing about) such open racial discrimination is illegal in the U.S.

Unfortunately, it seems there’s still a long way to go to combat the legal discrimination on the basis of a neuropsychological disability. I’m sure it would not even occur to Portillo (or at least she would not dare) to put a minority child or a child in a wheelchair or an overweight one through a “vote” like this.

I also could not believe some of the comments left by readers in response to the news reports about Alex. And as much as I’d like to think that the comments against Alex and supporting Portillo and the exclusion of children on IEPs from regular classrooms were written by “trolls” – people who post inflammatory remarks just to stir up people and make them angry – I’m afraid that a lot of those comments truly are what people who wrote them think and believe and that’s what they teach their children.

One of Alex’s classmates, Jessica Moore, cried when Mrs. Portillo was removed from the classroom. She was among those who voted Alex out of the classroom and sees the incident as a “non-event.” Her father, Terrence Moore, of course doesn’t see anything wrong with that picture and calls Portillo a “very caring teacher.” (TCPalm.com, May 29, 2008 “Police report reveals teacher’s side of incident in which boy ‘voted’ out of Port St. Lucie class”)

I am terrified to think whether any of parents of my son’s classmates would want him removed from the classroom. Some of the behaviors that made Alex’s peers vote against him were humming or eating paper. My son doesn’t hum or eat odd things anymore, at least not in school, but he used to. He stopped doing that because he received a lot of accommodations and behavioral interventions at his integrated preschool. If he had a teacher like Wendy Portillo, I’m sure he’d be voted out sooner or later as well.

Everyone who has or worked with an autistic child knows that even with the high functioning kids the symptoms are quite noticeable right away. I’m floored by the fact that Alex has been in school since September and for the past nine months the school has done nothing to help him when it is widely documented that for autistic children intervention and support at this age is crucial and can make a lot of positive difference in the future.

There has been tremendous coverage of Alex’s story on blogosphere. I especially like the post “Wendy Portillo’s Psychological Mob Lynching of a 5 Year Old” on Thinking in Metaphors (I like too many parts of this post to quote it, I’d have to quote the whole thing)

and “Alex Barton” on Life with Joey where the author writes

“Not only was Alex Barton emotionally abused, but so was his entire class. […]This was an assault on an entire classroom of children, with Alex Barton as the focus.” (the entry also includes links to other blogs discussing Alex’s story)

Another blogger on MOM – Not Otherwise Specified (I love the title!) makes a very good point for inclusive education in her post “The tribe has spoken”

“In the midst of a difficult, troubling year, Alex Barton’s teacher called his village together and rallied them against him. Bud {the blogger’s son} also had a difficult, troubling year and, interestingly, his teacher also called his village together for a tribal meeting. Unlike Alex, Bud was not there for the meeting. And the agenda for Bud’s tribe’s meeting was distinctly different: one of the special ed team members came in to talk to Bud’s class and help them understand Bud a little better – help them understand the things that are difficult for him, the things that are easy for him, and the things they could do to support him through the challenging times. Like Alex’s village, Bud’s village came together. But Bud was embraced instead of exiled.”

And finally, I found very interesting the entry “Why I am closing the comments on two posts” on Asperger Square 8, where the author writes

“Around the web, you can find comments stating that she did the right thing, that children must be made to behave through any means available. You will also find people saying she should be harmed emotionally and/or physically for her crime. I’ve heard that she is undeserving of life. This is not acceptable to me. […] I know that if my worst moments were shown to the world, were discussed on numerous sites, some with nearly a thousand comments now, I would not want to continue living. Yet I believe in redemption (not in a passive sense, but through hard work toward change) and I hope that others, including Portillo, do too.
When people start coming to my blog and talking about revenge and sending people to hell, it is time to take a break. […] For the sake of the other Alexes, those whose names are not in the spotlight, it is time to turn our attention toward the larger societal problems, those which allow bullying to occur, not just in one school in Florida, but throughout this nation.”

I agree – even though I’m afraid the war on discrimination will never be won completely, we cannot stop trying. That’s why I’m planning to request putting in my son’s IEP “educating the school staff about autism and ADHD and the types of accommodations and interventions required” – a suggestion I picked from A Parent’s Guide to Special Education: Insider Advice on How to Navigate the System and Help Your Child Succeed, by Linda Wilmhurst and Alan W. Brue, published by AMACOM in 2005.

Filed Under: Asperger Syndrome, Autism, Education, Special Education

Autism 101: A basic definition

April 17, 2008 by 1 Comment

What is autism? The Autism Society of America, “the nation’s leading grassroots autism organization,” founded in 1965, says on their introductory web page that “Autism is a complex developmental disability that […] affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a ‘spectrum disorder’ that affects individuals differently and to varying degrees.”

The term “spectrum disorder” is very important here, because the severity of the disability varies from person to person.

Stephen Shore, mentioned in my post “Understanding Autism (for Dummies, by Stephen Shore),” posted on his web site the “autism spectrum wedge” – a diagram of the autism spectrum severity created by Dr. Dan Rosenn, MD. (scroll down the page to the second graph to see it)

On the left are individuals whose autism is severe and debilitating – they are not only non-verbal, they may be unable to show to the “outside” world what they think, how they feel, or what they want or don’t want. It may look like they are completely unaware of what’s happening around them, they seem to be in their own world. (In reality, we now know they are aware of their surroundings, but that’s a topic for another post)

Stephen Shore places himself as a non-verbal four-year-old in the middle of the wedge – true, he was non-verbal, but despite not being able to talk, he was able to interact with his mother. The different shapes in the wedge are supposed to represent a variation in autistic characteristics – there is more variety among individuals with moderate autism in how they behave and which functions are impaired.

On the right side of the wedge are people with the so called “HFA – highly functioning autism” or “AS – the Asperger Syndrome.” At this point on the spectrum, the variation among people is the largest and each person’s autism might manifest itself in a completely different manner.

So what do they all have in common?

You can go to the Centers for Disease Control and Prevention section “Autism Information Center” to see the full definition for each disorder.

But in short, according to the Diagnostic and Statistical Manual (DSM), fourth edition, published by the American Psychiatric Association in 1994, 299.00 – Autistic Disorder—is characterized by:

1) qualitative impairment in social interaction

2) qualitative impairments in communication, and

3) restricted, repetitive and stereotyped patterns of behavior, interest, and activities.

The DSM makes a distinction between 299.00 and Asperger’s Disorder, which shares the code 299.80 with Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism). But only the requirement for “qualitative impairments in communication” is missing from the definition for 299.80.

The common part is the “impairment in social interaction” and the “restricted, repetitive and stereotyped patterns of behavior, interest, and activities.”

By the way, the definition for the Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism), or PDD-NOS for short, does not have a specific list of criteria. It just states:

“This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes atypical autism – presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these.”

The most important word in this definition is “or.” To get a diagnosis of PDD-NOS not all three areas (social, communication, and behavior) from the autism diagnosis have to be impaired; it could be just one. So a child could get a diagnosis of PDD-NOS even if he or she was not exhibiting “restricted, repetitive and stereotyped patterns of behavior, interest, and activities”— the requirement for both the Autistic Disorder and the Asperger’s Disorder diagnosis.

That’s why one of the specialists that saw our son made a diagnosis of PDD-NOS, because his “peer relationships” were not “appropriate to developmental level,” his “ability to initiate or sustain a conversation with others” was also impaired, and he was exhibiting “lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level.”

Filed Under: Asperger Syndrome, Autism, PDD-NOS