Tips for Creating a Networking Group for Parents of Children with Special Needs at Work

December 3, 2009 by Leave a Comment

The reason it’s been very quiet on this blog is because I’ve been very busy elsewhere – I have been working on creating a networking group for parents of children with special needs at the place where I work.

I am happy to report I’ve made a good start!

When I posted a message on one of the newsgroups I belong to mentioning that I “managed to convince HR people at my workplace to help create a networking group for parents” I was contacted by Joan Celebi, Ed.M., CLC – a personal coach specializing in helping parents of children with special needs. You can read more about her at: http://www.specialneedsparentcoach.com/. She asked if I’d be willing to share how I managed to accomplish the creation of the group because one of her clients was trying to do that as well. It turned out she lives pretty close, so we met for lunch and I told her what I did.

Afterward I thought it would make a good blog post, and so did Joan. But it turned out creating a networking group is more time consuming than I expected, so I have not been able to get to it for a while. But here it is — I hope maybe others will be able to use this information as well.

Tips for Creating a Workplace Networking Group for Parents of Children with Special Needs – Part I – Do your prep work

The reason I wanted to create a networking group for parents of children with special needs at work is because I knew that at a place that employs over 16,000 people there’s got to be other parents like me and I wanted to meet them.

According to Massachusetts General Hospital’s Center for Child and Adolescent Health Policy, “In any given company nationwide, 8.6 percent of employees care for children with special needs.” (“Children with Special Needs and the Workplace: A Guide for Employers”, page 7, at http://massgeneral.org/children/professionals/ccahp/empl_benefit_study/pdf/EmployerGuide.pdf) So if you work for a company with 100 employees, statistically eight of them have children with special needs / disabilities.

Try to find other parents on your own

If you frequently interact with a lot of your co-workers, you can try to find some other parents on your own. Naturally, you can’t ask directly “You don’t happen to have a child with special needs, do you?” But if you pay attention you might see the clues…

Pay attention to parents who don’t say much about the child’s accomplishments in sports and hesitate what to answer when asked whether the family is busy on the weekends going to soccer, baseball, or hockey. That might mean (as in our case) that the kid is not good at team sports. It might be a physical disability, but it also might be autism or ADHD.

Pay attention to parents who never brag about their child’s grades and hesitate what to answer when asked how the child is doing in school. That might mean a child is not doing well, and might have a learning disability (recognized or not).

Pay attention to co-workers who do not attend company family picnics even though you know they have children. If a child has behavioral issues, autism, sensory issues, ADHD, or other neurological problems, big events like that are simply overstimulating and more torture than pleasure. Plus the parents may not want their co-workers to see their child in “one of those moods.”

Pay attention to co-workers whose preschoolers at the company picnic quietly dig holes in the dirt the entire time, not interacting with anyone, not even lifting up their head to say “Hi” when approached.

Pay attention to co-workers whose young children at the company picnic run around wildly not responding to their exasperated parent’s pleas to “stop and sit down quietly for a moment.”

When I see other parents embarrassed by their kids’ atypical behavior, I usually smile and say “That’s all right. My kid does (did) that too. He’s (very hyper / has social difficulties / is very clumsy). [shoulder shrug] I’m told it’s neurological.” That might give them enough information to open up and start talking.

If you find another parent with a child with special needs, or better yet a few parents, it will make it easier to make your case to create a networking group. Until the first workshop, I was wondering if I’m crazy and the whole thing is going to blow because nobody will show up. Eight months later, we have over forty people in the group and at each workshop there’s been at least one or two new people showing up.

Carefully examine your company’s HR structure

Small companies might have just one department doing all the hiring, benefits management, etc. If that’s the case, that’s where you need to go.

Larger companies might have a “hiring” unit separate from their “benefits” unit. Some will also have a “family and work integration” unit.

Look for a place that has the ability to contact all employees, preferably somehow connected to employee benefits, but it could also be the Internal Communication Office that sends out the Employee Newsletter.

At the place where I work there is a specific unit called “Office of Work / Life Resources” and that’s where I went. I found out who the manager / director is and requested a meeting.

Request a Meeting

Think carefully if you really want to do it. First of all, from that point on you’re going public with the information that you have a child with special needs. You have to be absolutely sure that you’re okay with that. Second, unless you’re a natural leader and a community organizer, organizing a bunch of individuals into a group will be very time consuming.

Here’s what I wrote to the director of the Office of Work / Life Resources. Feel free to use all or some of the language. I know it’s a bit lengthy, a shorter letter might be more effective. The goal is just to get a meeting. That’s when you’ll present your case in full.

Dear [name],

I am looking for help in creating at [company name] an employee-led support group for parents of children with special needs – children with physical and/or neurological disabilities who are receiving services and therapy from the Early Intervention programs or have an Individualized Education Plan (IEP) in school.

I apologize if you are not the right person to contact in this matter. If you happen to know the correct procedure for creating an employee-led support group, I would appreciate your advice.

According to the Massachusetts Department of Elementary and Secondary Education data, over 16% of students in K-12 are receiving special education services. That number does not include children who receive Early Intervention.

I do not know how many employees at our company have children, but even if only half of them do, then statistically nearly [number of employees x 0.5 x 16%] employees have children who receive special education services.

Having a child with a disability creates tremendous stress on the parent. Many parents feel overwhelmed and lonely while they’re trying to come to terms with the diagnosis and deal with a multitude of feelings including fear, shame, guilt, and despair, then look for more information about the condition and ways to help the child, try to learn about the special education law, medical insurance definitions, and spend quite a bit of time negotiating with the authorities (state, health insurance provider, or the school) to make sure the child receives necessary services.

A [company name] group for employees with children with special needs would offer these parents a chance to connect with others who are or have been going through the same process and dealing with similar issues, and would provide a forum for parents to share information, offer advice, and provide emotional support.

What’s more, the creation of such a group would not only contribute to the members’ well being, it will also result in a strengthened sense of being part of community and increased loyalty to the workplace where one can find understanding and support.

Please let me know what steps need to be taken to start this project – who needs to be involved, who needs to give permission, what procedures and rules need to be followed, etc. I am willing to do all the “legwork” but I do not know where to start. I’d be happy to meet with you at your convenience to discuss this matter.

sincerely,
[name]

If you don’t get a response right away, send a reminder in a week or two. If an e-mail reminder doesn’t work, try calling. If you get a voicemail and your phone call doesn’t get returned, stop by that person’s office and ask for an appointment.

What if they say “no” right away?

They might say “no” right away. They might say that in these difficult financial times and scarce resources it’s not possible to start a new project. Explain that you understand and that you are not asking to start a new program or benefits, you’re just looking for help in finding other parents who have a similar situation.

What if they say “yes”

If they say “yes” right away, that’s awesome! Maybe they have someone with a disability in their close or extended family and will be very supportive. You never know.

The next step will be “Part II – Present Your Case” but that’s a whole other blog post.

Filed Under: Coaching, Life and Work, 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

Yopple eepee

February 2, 2009 by Leave a Comment

We’ve been subjected to high-pitched chanting of “yopple eepee yopple eepee yopple eepee” for several days now and today during the 30-minute drive coming back from the auditory processing evaluation I finally found out what it’s all about.

Apparently one of my son’s classmates sounded out “people” as “pee-o-ple-ee.” That, repeated over and over again, of course sounds like “yopple eepee yopple eepee yopple eepee.”

One mystery solved. But we still don’t know why in the world he needs to repeat that over and over again, and especially in a chant-like very high pitched voice.

On the other hand, the auditory processing evaluation went fine. Meaning his auditory processing skills are at or above age level. So it’s not that he has trouble hearing, or understanding what is being said to him, even in an environment that makes it hard to listen. He can hear and comprehend speech just fine. He just … what? .. I guess he just “chooses” not to respond…

I’m think I’m just going to cancel all future appointments with the neurologist and other developmental pediatricians. The good thing insurance covers those things, but it is just beginning to look like a waste of time. Yes, his 20-minute EEG came out a bit unusual, but still it was not in the seizure range. I don’t think his staring into space while someone is taking to him has anything to do with seizures.

What’s the point of loosing half a day of work for me and half a day of school for him? It is not going to change anything.

If I sound frustrated, I am. I don’t even want to write anymore. And it’s not about “yopple eepee” or the auditory processing, but about something else entirely that he does that is so disgusting and gross that I’m too ashamed and upset to write about.

Filed Under: Auditory Processing, Personal Information

Ethnic background and attitude toward Special Education

January 29, 2009 by 1 Comment

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.)

Filed Under: Education, Special Education, Testing

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

Citizen’s Briefing Book update

January 20, 2009 by Leave a Comment

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).

My comment “Revamp the Javits Gifted and Talented Students Education Program” got only 210 votes overall and two comments. My two other comments got more points — “Education for Gifted Children” got 500 points and “Gifted Education” got 470 points.

The “Begin a discussion about fair public school funding” comment 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, the “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 entries that got thousands and thousands of votes. But if people care about this topic so much, 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.

Filed Under: Education, Federal Government, Gifted and Talented, Nutrition, Special Education
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