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

Following the Web from “organic foods” to “hyperbilirubinemia”

February 8, 2009 by Leave a Comment

What does it tell you about eating “conventionally grown” foods if your own health insurance plan includes in its newsletter a short article about eating “organic”?

Harvard Pilgrim’s Winter 2009 mini-magazine includes a brief feature titled “Eating Organic on a Budget.” (see page 11)

Now, if you read the “fine” print (the paragraph titled “A Guided Tour of the Supermarket”), this feature seems to be just somewhat of an ad for one of the Harvard Pilgrim programs called “Supermarket Shopping” which

includes an aisle-by-aisle supermarket tour, led by a registered dietitian, that teaches you how to make informed decisions about the food you buy for yourself and your family.

Too bad they do it only on Cape Cod! I’m quite a long way from the Cape.

But the article also includes “Tips to avoid pesticides” and provides a link to a pdf of the “Shopper’s Guide to Pesticides in Produce” released by the Environmental Working Group. I especially like the page titled “Reducing Exposure is Smart” on the EWG site, which has a section “Tiny Doses Can Be Toxic to Children” and a list of references at the end.

I took a peek at Pesticides in the Diets of Infants and Children and what really got me interested was a quote that’s actually not related to pesticides or organic food at all.

Chapter 2, “Special Characteristics of Children” says

Because of the dependence of behavioral development on physical and functional development, toxic effects occurring before maturation may permanently alter behavioral development. The most commonly encountered and well-known toxicants that can permanently change all four of the components of behavioral development are bilirubin toxicity in the newborn and lead toxicity in the infant or young child. All four aspects of behavioral development are important in studies of developmental toxicology, but much more attention has been given to the first two because they are easier to measure.

The four aspects of behavioral development that they’re writing about are:

(a) gross motor and fine motor activities; (b) cognitive ability; (c) emotional development; and (d) social development.

And apparently:

Alteration in one of these domains can affect the development of each of the other three.

Interestingly, both of my children had neonatal hyperbilirubinemia, which was caused by our blood type incompatibility.

My son’s hyperbilirubinemia was severe enough that he had to get phototherapy. (if I remember right, when he was two days old his levels were at 17 or 18 mg per dL).

My daughter also had hyperbilirubinemia but didn’t receive phototherapy because supposedly her levels were never high enough to warrant that. I do not remember what they were and I do not have these records at home, and now I wonder, because her jaundice hung around for much longer. In fact, she is quite yellow in the pictures from the first days of her life.

Now, I knew that one of the effects of hyperbilirubinemia might be “mild mental retardation.” But if I understand the paragraph I cited correctly, hyperbilirubinemia might also influence the other aspects of “behavioral development” such as gross motor and fine motor activities; emotional development; and social development.

I wonder if anyone has done studies what percentage of people with autism and ADHD had neonatal hyperbilirubinemia as compared to “control group.”

Another thing to add to my “things to research” list…

Filed Under: ADHD, Autism, Gifted and Talented, Nutrition, Personal Information, Therapy and Treatment

Antibiotics and increase in symptoms

January 28, 2009 by Leave a Comment

My son got strep last week and is on antibiotics until the end of the week. Interestingly, I don’t know if it’s because of the antibiotics, lack of exercise and fresh air (it’s either snowing or too cold to go outside), boredom, or what, but we’ve seen some increase in symptoms recently — much more distractibility and fidgeting, some “strange” behavior (high pitched “chanting,” licking things, hanging off the sofa with head upside down). It’s like his brain is going haywire.

It has been a pattern in the past, when he was little, that whenever he was on antibiotics his hyperactivity would go through the roof. This time there are other things happening as well.

I wonder if it’s the red #40, or the antibiotics in general. Or something entirely else… I guess we’ll find out when we stop the medicine.

I’m curious whether anyone has done studies on the influence of antibiotics on the brain, if there are any subgroups of people for whom antibiotics changes their behavior. Or maybe it is the disappearance of the beneficial gut bacteria? I think I’ve read somewhere a theory that antibiotics may increase the severity of autistic behavior, but I don’t remember the explanation of why it would happen and who worked on that. I’ll have to try to look for it…

Filed Under: ADHD, Autism, Medication, 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

Change.gov is closed, whitehouse.gov is up(dated)

January 21, 2009 by Leave a Comment

I slightly panicked when I went to change.gov today and saw only a plain-looking box referring everyone to whitehouse.gov. I was afraid all the links I created to change.gov in my previous posts were broken. (“Citizen’s Briefing Book at change.gov” from January 13, 2009, and “Citizen’s Briefing Book update” from January 20, 2009) But I should have known better — an administration that is so web savvy would never do that to the people — you can click on continue on to change.gov and see all of the previous content. Phew! (June 30, 2010 update — it seems the citizen’s briefing book has been taken down, after all. Too bad.)

I checked out whitehouse.gov as well, while I was at it, especially “The Agenda.”

The Education agenda promises several things that I find interesting (I’m not sure how static those pages are going to be so for future reference, I’m copying the text. June 30, 2010 – good thing I copied the paragraph below, it’s no longer there.)

Obama and Biden will reform NCLB, which starts by funding the law. Obama and Biden believe teachers should not be forced to spend the academic year preparing students to fill in bubbles on standardized tests. They will improve the assessments used to track student progress to measure readiness for college and the workplace and improve student learning in a timely, individualized manner. Obama and Biden will also improve NCLB’s accountability system so that we are supporting schools that need improvement, rather than punishing them.

I love the language on filling in bubbles. But I wonder what they mean by improving student learning in an “individualized manner”? differentiation, perhaps? (I wish)

Another item on the Agenda:

Barack Obama and Joe Biden will double funding for the Federal Charter School Program to support the creation of more successful charter schools.

That’s very nice, especially given the fact that a recent report Informing the Debate: Comparing Boston’s Charter, Pilot, and Traditional Schools finds

large positive effects for Charter Schools, at both the middle school and high school levels. For each year of attendance in middle school, we estimate that Charter Schools raise student achievement .09 to .17 standard deviations in English Language Arts and .18 to .54 standard deviations in math relative to those attending traditional schools in the Boston Public Schools.

Unfortunately, the elementary charter schools that are closest to where we live are not that great and they’re two towns away anyway. And I doubt there are enough people in our town with enough drive and determination to create a charter school. What I’d prefer more than charter schools would be a choice to send my child to any good public school, in or beyond the town I live in, not just the option of getting on the lottery list for a charter school. That will never happen, though. The parents in rich towns would be too much against such a measure and will not allow that. That would probably be even worse than desegregation for them.

July 30, 201 update — the language on charger schools has been changed as well, it says now:

The President believes that investment in education must be accompanied by reform and innovation. The President supports the expansion of high-quality charter schools. He has challenged States to lift limits that stifle growth among successful charter schools and has encouraged rigorous accountability for all charter schools.

Going back to the whitehouse.gov Education agenda:

Make Math and Science Education a National Priority: Obama and Biden will recruit math and science degree graduates to the teaching profession and will support efforts to help these teachers learn from professionals in the field. They will also work to ensure that all children have access to a strong science curriculum at all grade levels.

That would be very nice. My son loves math. What I also would like to see is the change of attitude toward math. He keeps hearing from his friends that they hate math and I think he is beginning to think that, in general, loving math is not “cool.”

July 30, 2010 update — the Education agenda page does not mention anything about Math and Science now, but I noticed a link in the right column to a blog post “2010 MATHCOUNTS Winners Visit President Obama,” which mentions Obama’s “Educate to Innovate” Campaign.”

Again, going back to the whitehouse.gov original Education agenda:

Expand High-Quality Afterschool Opportunities: Obama and Biden will double funding for the main federal support for afterschool programs, the 21st Century Learning Centers program, to serve one million more children.

I wonder if that will trickle down to little towns like the one we live in. The town’s after school program doesn’t have enough slots to serve all children. We have to pay extra for a private after school.

July 30, 2010 update — that language is gone too and there’s nothing about afterschools at all.

Last, but hopefully not least, item on the Education agenda:

Obama and Biden will work to ensure the academic success of students with disabilities by increasing funding and effectively enforcing the Individuals with Disabilities Education Act, and by holding schools accountable for providing students with disabilities the services and supports they need to reach their potential. Obama and Biden will also support Early Intervention services for infants and toddlers, and will work to improve college opportunities for high school graduates with disabilities.

Sounds nice. I wonder when we’ll see that happen.

July 30, 2010 update – that language is gone as well, but the new language includes a claim that the American Recovery and Reinvestment Act

includes $5 billion for early learning programs, including Head Start, Early Head Start, child care, and programs for children with special needs.

By the way, a separate, Disabilities Agenda says:

Provide Americans with disabilities with the educational opportunities they need to succeed by funding the Individuals with Disabilities Education Act, supporting early intervention for children with disabilities and universal screening, improving college opportunities for high school graduates with disabilities, and making college more affordable. Obama and Biden will also authorize a comprehensive study of students with disabilities and issues relating to transition to work and higher education.

June 30, 2010 update — the language seems to have been changed to:

President Obama supports educational opportunities for people with disabilities and will expand funding for programs like the Individuals with Disabilities in Education Act (IDEA) that ensure all Americans have access to the tools to succeed. President Obama also supports increased enforcement of IDEA.

And, interestingly, there is a whole, separate, section titled”Autism” on the bottom of that page:

President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders ASD), their families, and their communities. There are a few key elements to their support, which are as follows:

  • First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.
  • Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.
  • Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.
  • Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.

On another hand, the search of whitehouse.gov did not bring any results for “ADHD” or “gifted.”

June 30, 2010 update — there’s nothing about autism on the Disabilities page anymore.

Filed Under: Autism, Education, Federal Government, Special Education

NTs or the Neurotypical

January 16, 2009 by Leave a Comment

In her comment to my post “Why are white lies considered ‘politeness’?”, Debra mentions “the NT world.”

Responding to her comment, I wrote in the post scriptum “I doubt that anyone visiting my site would not know what NT, mentioned by Debra, means — but just in case — NT is short for ‘neurotypical’ or, as most people who don’t know any better would probably say — ‘normal.’”

Then I remembered seeing on the Attention Deficit Hyperactivity Disorder Forums a question about what NT means and wondered whether, even though within the “autistic” community pretty much everyone knows what the acronym stands for, others are not as familiar with this term.

The NTs who have a good sense of humor and are not easily offended might find amusing the “Institute for the Study of the Neurologically Typical” site, especially the page listing the “diagnostic criteria for 301.666 Normal Personality Disorder.”

That site reminds me of a joke Stephen Shore made during the presentation I saw nearly a year ago (see the entry  “Understanding Autism (for Dummies, by Stephen Shore)” from April 10, 2008) – that his next book will be titled “Understanding Neurotypicals for Dummies.” He even had a slide of a mock book cover with the bullet points saying things like “learn to decode nonspectrum behavior”; “educate children on radical acceptance of differences” (I’m not sure what he meant here, I’m afraid); “successfully communicate without eye contact.”

As I’m still learning and sometimes have trouble navigating American social customs, I could relate to the joke.

Along the similar lines, but much more philosophical is the blog NTs Are Weird written by an adult male who’s autistic.

NTs Are Weird is full of “opinion” entries, as well as plenty of passionate advocacy and “issues” posts. It also includes quite a bit of personal (sometimes very personal) reflections. Overall I found it a fascinating read, and quite philosophical too.

Reading it made me wonder if my son will think and feel like that when he grows up, and I had a bit eerie feeling of reading letters from the future. But it also gave me a desperately sought glimpse into what the world looks like to an autistic adult.

I remember having a somewhat similar feeling when I read posts of adult ADHDers on the Attention Deficit Hyperactivity Disorder Forums but also remembered how much some of them disagreed with the way the parents on the forum thought the ADHD kids should be handled.

I wonder what the author of NTs Are Weird and other adults with autism think of the parents’ posts and blogs and how much they hate the parents for saying how stressed or upset they are sometimes by their kids’ behavior. I frequently wonder myself how much my son would hate me, if he knew what I wrote about him (especially in the first post).

Yet, we don’t really hate our children, and at least in my case I actually don’t wish my son were a typical child. He’s very interesting the way he is. I just wish I knew how to deal with some of his “moments” and how to keep “cool” at those times. That is still hard.

I do hope my son will be able to express himself in the future as well as the author of NTs Are Weird. He’s not much of a talker, he doesn’t like handwriting, and doesn’t know how to type (yet, I’ll make sure he learns). So I don’t really know what’s going on in this 2e head of his.

Going back to NTs Are Weird, I got very intrigued by the post “Disability Awareness Day” (Sepember 28th, 2008)  and was somewhat surprised by the negative responses to the idea #2, because I like this idea the most. I would add the following exercise to the list — go into a room with strobe lights flashing, music blaring and several TVs turned on, each to a different channel. Have a teacher read a story and then quiz the students on how much they remember from the story and if they do not remember much, have the teacher complain that they should have “tried harder” to concentrate on the story.

I’m also curious though why the author of the NTs Are Weird thinks “ABA is unethical” (“Negative Definitions,” January 10th, 2009) I did not read the entire NTs Are Weird but I did use the search engine and could not find more posts about that. ABA seems to be like a religious doctrine in “correcting” the behaviors of children with autism – everyone seems to be expected to do it and believe in its efficacy.

Filed Under: "Insider's" view, ADHD, Autism, Other Blogs, Special Education

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
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