While I have known for a while that some parents will look the other way when a child is struggling and will not have the child tested because they’re afraid or ashamed of the “special ed kid” label, I had not realized that minority families seem to be much more wary of that, until I read “Problems with the rush to label children,” by Andrea Hermitt (Education Examiner) posted on December 30, 2008, and the follow up “From Special Ed to gifted to somewhere in between.”

Andrea writes:

I think what appalls me most about labeling of school children is that over all, kids are disproportionately labeled based on race.

In response to that post, another Education Examiner — Caroline Grannan, from San Francisco, writes in the comments:

middle-class white parents are often eager to get their kids who may have some learning difficulty identified as special education. [...] I believe the vast majority of parents who seek special-ed ID are not doing it to get an “unfair” advantage for the child but because they believe the child needs the services, I should clarify.

By contrast, in the African-American community, special-ed identification is (generalizing again) often viewed as a stigma, a brand of shame — and racist. That’s even though special-ed identification does carry those same benefits — extra (free) academic support and testing accommodations.

Our district is plurality Asian (statistically the highest-achieving demographic), and oddly, I don’t have a handle on a consistent attitude toward special ed in that community, nor in the Latino community. The white and black attitudes seem to be the most consistent and evident.

In the follow up post, “From Special Ed to gifted to somewhere in between” Andrea brings up the subject of “special ed labels” again:

As I see it, affluent people want more services for children labeled Special Ed.  Meanwhile, lower income, and minorities who feel that children are being unfairly labeled don’t want to end up in the system at all where they won’t get the help even if they need it.  So as I see it, everyone agrees.  Special Education programs do little to truly advance the children back to mainstream education.

The way I see it, Andrea is lucky she doesn’t have to deal with the “system.” I would much rather not have my son labeled “special ed” but as I wrote in my response to comments in “Engineers, Hips, and Autism,” having him labeled does give him the extra services that he would not get otherwise.

Now, would he be getting those services if we didn’t fight for it and show up for our IEP meetings with a huge folder, books on the subjects highlighted throughout, and our insistence on services? Maybe not. It’s the “squeaky wheel gets the grease” issue.

On the same topic, Lindsay, the blogger on the Autist’s Corner (which I discovered recently and happen to like a lot) quotes Anna Stubblefield in her January 14, 2009 post “Intelligence Is Racialized” as saying:

[B]lack students are both more likely than white students to be labeled as special-needs students and more likely, once labeled, to be relegated to special-education ghettos rather than receiving the least restrictive, inclusive education mandated by federal law.

I live in a small town that’s pretty much all Caucasian, so I can’t talk about minority kids being overlabeled here, but I did notice from talking to parents who have children on IEP that kids of parents who are on the lower end of the socio-economic status, or who do not have the time and the know-how of finding out more information about what their child should be getting out of school, are more likely to not get the right services. So here the divide is not along ethnic background lines but more tied to socio-economic status.

I wonder if anyone studied whether overall minority children from affluent, or middle-class homes are as likely to be diagnosed as minority children from low-income families, and whether there is a difference in how their parents view the diagnosis, specifically whether middle-class and affluent minority parents are just as opposed to “special education” services as minority low-income families, or if they are more”eager” to have their kids identified just like the middle-class white parents that Caroline Grannar mentions.

In the end, I do agree with Andrea when she says

just like in the cases of Special Education, gifted programs are no better at serving gifted students than Special Ed programs are at serving Special Ed students.  So at the end of the day, the only kids really getting an education that meets their needs are those that are truly middle of the road, mainstream children.

but I hope parents of children who struggle with reading, math, or have other problems at school will not listen when she says

I am begging and encouraging parents to question any labels that are being put on your kids.  I am asking teachers to consider if these kids really need labels, or perhaps just time to mature.

The problem is, you can’t mature out of dyslexia, learning disability, or autism. In those cases, the earlier the services start, the better chance there is of catching up.

The issue is not the “label” but getting adequate services, regardless of the child’s ethnic background or socio-economic status. We shouldn’t be fighting against labels and special education, we should be fighting for making sure all children get the right education and the help they need.

(added 1/30/2009 — Being against “special education” because some children get worse services than others is like throwing out the baby with the bathwater and I don’t think that is the real point, anyway.

I think Adrea’s main point really boils down to the sentence

We do see the trend of lumping an inordinate amount of African Americans into Special Ed as a racist activity.

but I worry that was lost in the comments.

So it is not about special education, really… It is — let’s have a courage to say it — about the “good ol’” discrimination and prejudice that the minorities and the unprivileged have been facing for centuries and unfortunately still do some time.

It is about the attitude that children from poor and minority families, tend to be seen as less intelligent, as more likely to have trouble in schools, and are not expected to perform as well as their peers, so at the first sign of “trouble” they are skirted off to “special education.” Add to that the fact that they usually live in districts that have little money not only for quality “special education” but “regular” education as well, and yes, the end result is that they get stuck behind and fall more and more behind every year. It’s not that special education is bad, what’s bad is how these children are treated.)

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…

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.)

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 a paragraph

“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.

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.

The Citizen’s Briefing Book, which I mentioned in the post “Citizen’s Briefing Book at change.gov” was closed on Sunday, January 18, 2009 (see “Wrapping up the Citizen’s Briefing Book”  entry on the change.gov blog).

“Revamp the Javits Gifted and Talented Students Education Program” got only 210 votes overall and two comments. I was glad to see two other “comments” got more points — “Education for Gifted Children” got 500 points and “Gifted Education” got 470 points.

“Begin a discussion about fair public school funding” was just a tad more popular – it got 230 points (and two comments). I must say I’m really surprised people put up with the way the schools are funded because it really is not fair to poor kids to have to go to crappy schools just because their parents cannot afford to live in a town where the schools are good.

“Fulfill the promise of the federal IDEA (Individuals with Disabilities Education Act) funding” got 420 points (and eight comments, some of them quite passionate).

I must say I’m quite surprised that of the four “comments” I submitted “Ban artificial coloring and chemicals in foods” was the most popular – it got 620 points (and 5 comments). Granted, that’s nothing with the most popular “comments” that got thousands and thousands of votes. But if people care about this topic, why isn’t there more of an outcry to do something about artificial coloring in the U.S.? I wonder if the new administration will do anything in that direction. (I can’t find any information on whether there is going to be a new Commissioner of Food and Drugs to head to U.S. Food and Drugs Administration … Does anyone know?)

Ruby from the “Max & Ruby” show that is. For those who’ve never seen the show, which is based on the books written by Rosemary Wells, and made by Canadian Nelvana (shown on Noggin and Nickelodeon channel) – Max and Ruby are (bunny) siblings, Max is supposed to be about three years old, and Ruby, his older sister, is seven.

Max & Ruby live in a cute little cottage, but weirdly enough, all by themselves (which made my son somewhat concerned at one point and he wanted to know what happened to their parents). Max is a typical three-year-old boy (I mean, bunny) and likes to get into mischief. Every time he does something naughty, Ruby, in her signature sing-songy voice says “Ma-ax!” and then very patiently explains to him that he should stop his mischief and do something else instead. It is hard to explain her tone of voice, so if you’ve never seen the show, just watch the second episode on http://crackle.com/c/Short_Films/Max_and_Ruby/1936369. (fast forward to 8:00).

Watch it carefully… When Max brings a noisy toy to the room the first time, all she tells him is “You need a quiet toy to play with” and redirects him to a puzzle (9:07). Then, when Max brings another noisy toy to the room while she’s on the phone with a friend and is dying to learn a secret her friend promised to tell her, again, even then, all she says is “Max! I can’t hear Louise’s secret. Loud toys go outside. Come on. Let’s go.” without a shade of anger in her voice. (10:33) Similar scene repeats two times, as Max flies a toy a helicopter into the room (11:52) and sends in a toy talking parrot (13:20). Despite all that, Ruby never loses her cool and yells at Max. I am full of admiration for her. I don’t know how she does it… (other than being a cartoon bunny, that is)

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.

I think this is fairly new — it was published on President-Elect’s Blog today at 12:47 pm EST — The incoming president and his administration are inviting ideas and submissions to the Citizen’s Briefing Book.

The site promises “The best rated ideas will rise to the top — and be gathered into a Citizen’s Briefing Book to be delivered to President Obama after he is sworn in.”

When I searched the ideas already posted, there wasn’t much on special or gifted education (or autism, or ADHD for that matter), so I added the following (see below). Feel free to vote on these, or add your own ideas.

Whether you like my ideas or not, it doesn’t matter, everyone is entitled to their own opinion, but please forward the information about the Citizen’s Briefing Book to everyone you think might be interested.

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Revamp the Javits Gifted and Talented Students Education Program

Please revamp the federal Javits Gifted and Talented Students Education Program so that it benefits not only a small group of students whose schools were lucky enough to get the grant but all gifted students in the whole country. One of the ways to do that would be to create a FEDERAL mandate to identify and serve gifted students similar to the IDEA mandate to identify students that need special services and encourage districts to form cooperative magnet schools or classrooms.

Some people say that gifted children do not need help, they will do fine on their own, but some those children might have the brains to help solve the global warming or find a cure for cancer, IF they allowed and encouraged to progress through the curriculum at the speed they can handle. Making them slow down to the pace of everyone else is killing their enthusiasm for learning and wastes America’s potential.

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Beging a discussion about fair public school funding

As long as the quality of education a child gets depends on the income of that child’s parents and their ability to buy a house in the best school district or send a child to a private school there will be NO EQUAL OPPORTUNITY for children in this country.

Please begin a discussion about fair and nondiscriminatory distribution of public school funding to decrease the inequality between schools in rich neighborhoods that have beautiful labs and well-stocked libraries, and those in poor neighborhoods where there isn’t even enough money to repaint the walls over the summer.

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Fulfill the promise of the federal IDEA (Individuals with Disabilities Education Act) funding

Please make sure the federal government lives up to its promise of funding 40% of the IDEA costs.

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Ban artificial coloring and chemicals in foods

Please make the FDA ban artificial coloring, flavoring, and chemicals in foods and medications, especially in foods that children like (snacks, candy, etc.). Artificial coloring have been found to be harmful by researchers in Europe and companies such as Nestle and Kellog’s are removing these chemicals from the products they sell in Europe but not in the U.S. because here they are not required to do that. Our children deserve no worse than European children and should not have to eat that crap.

(see also the “Citizen’s Briefing Book update” from January 19, 2009)

I’ve lived in this country for nearly twenty years but I still can’t figure out why Americans consider as polite inserting little white lies pretending they care into conversations with people they really don’t give a damn about.

I’m talking about saying things like “We really have to keep in touch” to a coworker moving to another job you’ll be happy never to see again or adding “Maybe some other time” when you decline an invitation to an outing simply because you don’t like that person.

The February 2009 issue of hugely popular Parents magazine  includes an article “Your Complete Guide to Playdates” by Mary Jo DiLonardo which includes a“Q&A” Playdating Dilemmas.” One of the questions was:

“That kid was a brat, and I don’t want him to come back. What should I do?”

The suggested answer? You guessed it …

“Our schedule is crazy at the moment. Can we touch base at a later date?”

with a comment

“If you say that enough, all but the most socially inept person will get the message.”

What really surprised me is that these answers were provided by Melissa Leonard, a certified etiquette consultant in Harrison, New York.

It just so happens that one of my son’s classmates asked to come over to our house for a playdate, so I contacted his parents to arrange that. The answer I got was “We are fully booked for both Saturday and Sunday. Maybe we can find another day in the future.”

Mind you, she didn’t say “Gosh, I’m sorry. We can’t do it this weekend. How about in two (three) weeks?” or something along those lines showing she does want to arrange a playdate in the future. So… In the context of Melissa’s advice I should take that answer as “No way I’m sending my kid to play with yours,” and that really sickens me.

What in the world compels Americans to pretend they are friendly if they really don’t care?

Honestly.. If you cannot stomach telling me “I’m sorry, but I think your child’s exuberance just is just too much for my son and hypers him up” then all right, do say “We are fully booked.” I’m okay with that. But do not add “Maybe we can find another day in the future” when you don’t mean it. It might be the accepted convention, but to me that is not only disingenuous and insincere but just plan insulting. And disgusting.

What am I supposed to answer to that? “Whatever” would of course be my first reaction, but that would be rude. I could also answer along the lines of that  style and write back “I’m sorry to hear you are busy. I hope we can try some other time.” And leave it at that. But frankly, I don’t really feel like answering at all. And I don’t care what that mother or Melissa Leonard think about me. I refuse to play that game.

I’m just sorry for my son and that kid, because he really sounded like he wanted to come over to our house for a playdate.