Wonder who searched “explaining PDD-NOS to an idiot”

March 9, 2011 by 2 Comments

My blog is connected to Google Analytics, which lets me see all sorts of stats on who visits this blog. I like to look at “keywords” people use that lead to my blog. One term gave me a pause recently — On February 13, 2011 someone from Florida stumbled upon my blog after googling “explaining PDD-NOS to an idiot,” which is very curious because as of today, my blog doesn’t even come in the first five pages of results.

She (or he) browsed through several pages on the blog, but I don’t know if my ramblings were what she (he) expected. Too bad I have no idea of who it was, and whether that person found what she (or he) was looking for. I bet there’s a story behind it (isn’t there always?)

Filed Under: Autism, PDD-NOS

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

The IEP Process – Special Education Advice for Parents (Part I – The Beginning)

March 8, 2009 by 3 Comments

Learning about special education is a daunting journey. I’ve been doing it for over four years now and I’m still learning. I can barely remember the very beginning and how confusing it all was. That’s why when I read a call from Karen Nowicki (an integrative coach) for tips for parents with children on IEPs, I responded, even though it was tough to make my response so brief to meet the 100 words limit.

Karen was gathering responses for an article for Root & Sprout (a site I’ve never heard of until then) and has published her piece on IEPs just recently (update on December 3, 2009 – the site seems to have gone defunct since then).

When the article was posted, Karen wrote to me to let me know she received a lot of responses, and could not possibly include all of them, so I’m more than flattered that she did quote parts of my submission and included a link to this blog, even though I’m not anonymous any more. (I was planning to “go public” soon anyway, although I probably would not have published my name, just give the readers enough information that they would be able to find who I am.)

I’m also happy to be in the company of www.weddingsx3.blogspot.com, by Debbie Yost writing about mothering, family life & Down syndrome awareness; www.motheringautism.blogspot.com, by Pam Walsh, and on the same page that mentions www.wrightslaw.com, by Pete & Pam Wright, William & Mary Law School, Education Law Clinic & Special Ed Advocates, and www.LDpodcast.com, by Whitney Hoffman.

The first tip on how to prepare

Preparing for an IEP will require you to read everything made available to you by the school and everything else you can get your hands on to support your child’s rights to special services.

Is similar to what I wrote to her as well

Read, read, read – You have to know the law, your rights, and what the school is obliged to do for your child. There are several very good books on IEPs out there. My absolute favorite: Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide

The “Top Ten IEP Tips” from Carrie Gilmer and “Parent IEP Tips” from Eileen Mullin, are great too.

All that said, I tried to read this article as if I were a parent just starting out in this journey, and I’m afraid I probably would still not know what IEPs are all about and how to start the whole process, especially if my child was not in school yet and I did not know any staff from the district yet.

Most likely I would not understand the advice “Know and use IDEA 2004 laws and proper IEP procedure,” especially given the fact that the article does not explain what IDEA 2004 laws are. It is, of course, everyday language for parents of children with disabilities and in special education, but typical parents usually have never heard of IDEA (the Individuals with Disabilities Education Act), unless they work in Special Education themselves. And if they go searching for the term, they are most likely to get to the U.S. Department of Education web site, which is not very “beginning parent” friendly. (as I commented on in “IDEA (Individuals with Disabilities Education Act) U.S. Department of Education Web Site” from December 31, 2008)

The advice “Become an expert on your child’s disabilities” while extremely important, also assumes a parent knows what the child’s disability is. At the beginning of the journey, many parents may not even have a diagnosis yet and don’t know what to search for. In our case, the specialists disagreed on a diagnosis for quite a while. (as I complained in “Personal Introduction“ from September 2007)

So here comes:

Advice for Parents of Preschool-Age Children

When nearly four years ago my son’s private daycare teachers politely told us they won’t be able to “meet his needs” the following year when the number of children in the classroom was going from nine to fifteen and advised us to contact the local school district to see if he qualifies for special education services, I had to call a couple of places in the district before I found the right person to talk to. By the way, at that age “special education services” meant an “integrated” preschool with a comparatively low number of kids and a high number of teachers in the class, who can keep good tabs on everyone.

I know now that the place to start may not necessarily be called “Special Education Office.” In Massachusetts that’s usually called “Pupil Services.” If a district is large, the main office might refer a parent to a local school’s special education coordinator.

Whoever you talk to in that office will probably ask why you think your child should be evaluated and will ask for copies of any paperwork that would support that. They might ask for letters from the pediatrician and/or current teachers. It wouldn’t hurt if you wrote a letter too, listing all of your concerns, with examples. (I like to say things like “I am concerned about my son’s x y and z, because I have observed that …. Because of the concerns mentioned above, I am asking for ….”)

Starting the Binder

The day you first call the “Special Education” department at school is also when you should start a binder to document everything and where you start filing all paperwork, including the logs of phone calls.

I learned about the binder idea in a workshop “Getting Organized” presented to our local Special Education Parent Advisory Council by the Federation of Children with Special Needs. Until then I had been just simply keeping files in my file cabinet. But just about the same time I went to the workshop I found out I routinely ended up taking the files out of my file cabinet and lugging them to various appointments and meetings, where inevitably I was asked if these are originals or copies. I had to say “these are originals,” at which point they’d go and make copies, and sometimes, not often but it did happen once or twice, a page or two from the original would get lost.

Now I still keep the originals in the file cabinet, but as soon as I get any paperwork, I make at least three copies of the originals for the binder, one of which serves as the “pseudo-original” for copying, the other one is an extra copy I can just give out if necessary, and the third one is a “mark-up” copy where I write my comments.

I learned about the phone call log from what I consider one of the best books on special education — Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide, by Pam Wright and Pete Wright, founders of the Wrightslaw web site, which is packed with useful information. Until then it never occurred to me to create a written record of meetings and phone call conversations, but it’s a great idea, because couple months down the road you may not remember the day you called, who initiated the phone call, even if you remember who you talked to, the reason for the meeting or the call, and exactly what was discussed.

What I do now is a bit different than what the Wrights suggest — I write a follow up e-mail to the person I met with starting with “Thank you for taking the time to meet with me (talk to me) on (date) to discuss x, y, and z.” and including all the pertinent information about the conversation, especially if something was decided or agreed to during the conversation. I then print the e-mail and put it in the binder in the “Correspondence” section.

My son’s binder currently has the following sections, separated by labeled tab dividers (like the Avery(R) Write-On Tab Dividers With Erasable Laminated Tabs, 5-Tab, White):

  • Current grade work by date (the work he does at school that is being sent home)
  • Current year’s correspondence by date
  • Current year’s IEP
  • Current year’s progress reports, meeting notes, and data
  • Current year’s report cards
  • Last year’s correspondence by date (for the first couple of months of meetings in a given school year, after that I file it in an “archival” binder)
  • Last year’s IEP
  • Last year’s progress reports, meeting notes, and data
  • Last year’s report cards
  • Extra copies of documents (for photocopying, each in a separate plastic sleeve)

First meeting with the school (pre-IEP)

During the first meeting the school will probably hand you a lot of forms to sign consenting to various testing. The testing is supposed to assess the child “in all areas of suspected disability.” (IDEA Statue, Title I, B, 614, b, 3, B) The typical testing at preschool age usually includes

After all the testing is done, the school will (should) send the parents all results, with raw data and an explanation and recommendations for the future, and schedule a meeting to develop an IEP. At that point the school usually also asks (should ask) the parents to write a “Vision Statement” and “Parent or Student Concerns.”

The thing is – without knowing any information beyond the basic “Procedural Safeguards” and “Special Education Guides” that the school hands out, figuring out what to include in the “Vision Statement” and “Parent Concerns” might turn out to be a tricky homework. But that’s a huge topic, probably deserving a separate blog entry. I’ll try to get to it soon. (I’ve been very busy recently, hence the decline in the number of posts.) But I hope the above, nearly two-thousand word-overview somewhat covers the “What to Expect” part covering the very beginning of the process.

By the way, the tips I narrowed down to 100 words or fewer that I sent to Karen were as follows:

1. Don’t despair. Join a parent networking group if your district has one. In some states a Special Education Parent Advisory Council is mandated by law. It may be very active and working closely with the school administration or it may not. But it’s a great place to meet other parents who understand what you’re dealing with.

2. Read, read, read! You have to know the law, your rights, and what the school is obliged to do for your child. There are several very good books on IEPs out there. My absolute favorite: Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide.

I see networking and knowledge as crucial to the whole process. You need to learn about what you’re dealing with and since you’re not the first person starting on this daunting journey (even though it might feel like it at the beginning), connecting with other parents who’ve been doing it for a couple of years usually turns out to be very helpful for several reasons.

Filed Under: Education, Intelligence, Other Blogs, PDD-NOS, Personal Information, Special Education, Testing, Unwrapping the Gift of ADD series

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

Yes, it is PDD-NOS after all!

May 2, 2008 by 2 Comments

We finally got the neuropsych (neuropsychological testing) results and it is PDD-NOS after all! (See the entry “Autism 101: A basic definition” for more on PDD-NOS.) That may sound like I’m happy and someone might be thinking “Has she gone crazy?” but it’s good to finally have one doctor agree with another (see the first entry “Personal Introduction” about our history of testing and diagnosis. And as far as PDD-NOS goes — we knew it’s a high possibility. It is not the end of the world.

In fact, when I made the same remark in the doctor’s office, she emphatically said “Of course not! Just go and take a walk around the MIT campus!” Laughing out loud, but she’s right, and not just regarding the MIT. I suspect a lot of academics, especially the spacey, absent-minded type ones, have some undiagnosed conditions. I work with academics, so I’ve seen these types often enough to wonder about that myself sometimes.

The doctors haven’t recommended many changes to his IEP, they said they were quite impressed with it being so detailed and with the whole “team” at our son’s school. That was good and comforting to hear.

But they did give us a list of books “helpful in explaining and guiding [...] in fostering play.” We’re supposed to encourage him to “just be a kid.” We’ll try…

Oh, and he may have “challenges with higher-order processes such as executive functions.” (No kidding. We have problems with it too.) So we got a title of a book about executive skills as well.

Looks like I have the reading list all cut out for the next several months. (I’ve also been planning to read all the books mentioned in the “Unwrapping the Gift of ADD” series, and there were quite a few of those.)

There’ll be plenty of material for blogging.

Filed Under: Autism, PDD-NOS, Personal Information

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

Personal Introduction

September 20, 2007 by Leave a Comment

My son is twice exceptional — he is both academically gifted and special needs, or the other way around, depending on how you look at it.

There are times when I’m amazed at his intellectual abilities. Even since he was little, he could always figure out very fast how toys are operated and what he has to do to make it move. When he was two he could do quite complicated puzzles, the type for preschoolers. His daycare teachers were borrowing games from the preschool class especially for him. I also noticed he had an amazing memory and could remember events and places for a long time afterward.

Now, at nearly six, he can read fluently, is pretty good at math, knows all the planets in the solar system, etc, etc. Some of his favorite TV shows are the typical stuff that smart, geeky kids like: the PBS shows Cyberchase, Fetch!, Super Why, and Curious George; the Discovery Kids shows Popular Mechanics for Kids and Crash! Bang! Splat!, and Magic School Bus. But he also watches such shows as How It’s Made shown on the Science Channel and Brainiac shown on G4.

The popular belief out there about gifted kids is that these kids’ parents are pushy and “train” the kids to be gifted.

I admit, we have always tried to read a lot to him (if he’d sit and listen). And we have been trying our best to answer the never ending stream of questions he’s been asking over the years, starting from “What does this word say?” to, most recently, “Why are the red blood cells red?” and “What is infinity divided by two?”.

Our son also attended a Montessori preschool for two years and they have wonderful educational materials that, in my opinion, help kids learn how to read, write, and do math much faster than the conventional methods teachers use. I believe that academically he progressed at that Montessori school much faster than he would have at a regular preschool (but he also progressed faster than his peers in his Montessori class).

And yes, if we made him watch the Cartoon Network instead of letting him watch the Discovery Science Channel, he would not know more about the solar system and the universe than I do.

But giftedness, or as some call it “raw intelligence,” is not something that can be “trained” or”taught.” I suppose if we kept our son locked up in a dark cellar he would not know as much as he knows, but I have a feeling he would figure out his way out of there anyway.

When he was two and started daycare, his teachers wrote in a monthly report that he likes exploring the room and that in his explorations he has dismantled the faucet above the kids’ sink. They had not known that the faucet could be taken apart because no other child before had tried to do it.

That ties into our son being special needs.

As much as I love him and admire his gifts, there are times when I’m absolutely sure a diagnosis of ADHD is just a matter of time. He’s always on the go, touching everything, pushing all the buttons he sees, opening all the drawers and doors, or at least trying to do that, no matter where we are, at home, in the doctor’s office, at the grocery store, or anywhere we are. He can’t eat a meal sitting down, he has to stand and fidgets all the time. When he sits down, he still fidgets, and sometimes he falls down and appears truly surprised he fell down. On the other hand, when we send him to the bathroom to brush his teeth, and go in after ten minutes to check on him, more likely than not he is has gotten distracted and is just playing with water, and of course has completely forgotten why he went there in the first place.

There are also times when I’m afraid he will end up heavily medicated or worse, institutionalized. Because even though for the most part he’s a sweet and loving kid, there are times when he licks the back of the seat in front of him, his hands, or the window and does not understand why I am so opposed to him doing it. There are times when he goes in his pants because he is too absorbed in doing something and is “too busy” to go to the bathroom. He also does not seem to understand why he should not do that. And there are times when he just spins or seems to be in his own world, ignoring or not hearing what we are trying to tell him.

And then, not very often, but every now and then, especially after a long weekend full of him being wild and unresponsive, the medication route looks very enticing.

If only I knew what is the right thing to do…

There are days when I am completely exhausted from dealing with him and originally I wrote here that there are times when I wished he were institutionalized or medicated, but I’ve decided to change that. The truth is, even on those days, after he goes to bed and I have had a chance to sit and think and calm down, all I really want is to know how to help him have a happy life.

By the way, our son does not have a clear cut diagnosis. He’s been evaluated by three different specialists, each from a very renowned clinic or center, specializing in child development and various mental, neurological, and developmental disorders. And each of them told us a different thing and recommended a different course of action to help him.

When was three, we were told by an MD, MPH specializing in developmental and behavioral pediatrics from the Developmental Medicine Center at the Children’s Hospital in Boston that he has a Developmental Coordination Disorder. That was also when the tests confirmed he’s gifted.

When he was five, an MD specializing in Autism spectrum disorders, attentional difficulties, learning disabilities and school problems at the Learning and Developmental Disabilities Evaluation and Rehabilitations Services (LADDERS) center said that he has PDD-NOS.

Shortly after that, we were told by a PhD in psychology specializing in Autism and Developmental Disabilities at the Center for Child and Adolescent Development that he’s “just a plain old bright fun kid.”

Both my husband and I are very committed to helping him. We always attend the IEP meetings together. I’ve also been reading a lot of books, scouring the Internet for information. But, as my husband says, it’s hard to help him, if we don’t know what it is we’re dealing with and what the best course of action would be. This blog is intended to be my record of what we’ve tried, what we’ve learned, and any progress (or lack thereof). I can already see it will also be therapeutic for me to write about our son. And if anyone happens to find any useful information here, that would be an added benefit.

Filed Under: ADHD, Autism, Gifted and Talented, Intelligence, PDD-NOS, Personal Information, Special Education