Messages posted by: Connie (IAN Staff)

Rebsmom, you are absolutely right that far too little attention has been focused on girls on the spectrum. One way we hope IAN will make a difference is by helping researchers find girls. (Because it's even harder to recruit enough girls for a research project than boys, few projects focus on girls.)

Whenever I have the opportunity to speak with researchers, I will also stress that parents in the IAN Community want more done to help us understand and help girls with ASDs.

Welcome, sspetrok!

To answer your question about researching aspects of education, IAN definitely has the potential to make that possible. For example, we are considering including in IAN a survey on knowledge, attitudes, and beliefs about ASDs which would be directed at a variety of people, including educators. This would be a first measure of how much they know about ASDs.

Over time, there may be even more in depth investigations into this area as researchers in the field of Special Education, say, discover how the IAN Project can help them in their efforts.

I will be attending next month's Network of Autism Training and Technical Assistance Programs (NATTAP) Conference,and hope to inform a great many educators, therapists, state-level disability department representatives, and policy makers about the IAN Project and how it can help to advance research in the educational and therapy/treatment realm.

MzUnderstood, best of luck to you as the new school year begins...and to all parents facing a new school year.

I know parents who are old pros already have this down, but for those of you who might not, I wanted to make a suggestion regarding figuring out how to communicate your child's needs to the school. Use the IAN Community website.

You might want to go down the "Challenging Behaviors" section, for example, and think about what issues related to ASD apply to your own child. Do they have mood and meltdown issues? Executive function issues (as in, they can't get organized to save their life)? Sensory issues (regarding noise, lights, too many people in one room) that lead to inability to focus or falling apart? Sometimes walking in with a bulleted list of needs and possible accommodations --maybe even with print-outs of our IAN Community write-ups in hand to show this is recognized as part of ASD-- may prove helpful, especially if you are in a school setting where the staff are not that familiar with ASDs.

In fact, if new personnel (teachers, aides, etc.) are assigned to your child, I hope you will refer them to IAN Community --especially the "About ASDs" and "Challenging Behaviors" sections-- to help bring them up to speed.

I just wanted to thank you all for your contributions to this ongoing discussion. As you can see from dimples1's post, above, many are being supported and helped through this exchange.

I also wanted to let you know that, as researchers begin to develop an in-depth IAN Maternal Depression questionnaire, they are paying attention to your comments and experiences. While you support one another here, you are also helping to shape research.

When we first noticed that about 45% of the mothers taking part in IAN Research had been "diagnosed with or treated for Depression," only a few hundred moms had answered that question. Now, more than 4,600 moms have done so, and the percentage hasn't changed. It is an extremely important issue to explore.

Again, the IAN team thanks each and every one of you for your contribution. Now...please, continue! Your insights are so important.

Hi MzUnderstood.

To answer your question, I can tell you that I have a son with Asperger's about to enter the 8th grade. He has been in a special Asperger's class located within a regular middle school for all of 6th and 7th and now 8th.

It's a public school. Kids are bussed in from all over the county to attend the class. They have about 12 kids in there, plus a teacher, an aide, and any personal assistants that happen to be assigned to any of the kids attending. It's a combined 6/7/8 class. They keep the homework load very light. They do a LOT of social skills training, as well as anger management kind of stuff to defuse oncoming meltdowns. (When my son is getting upset, I hear him using "self talk" to calm himself down, and taking deep breaths. It actually works, too! He even uses his awareness of these issues to help the rest of us. I was getting upset about something this morning, and he said to me, very calmly: "Mom, let it go.")

Kids who are doing well enough can join some regular classes --going out for math or whatever.

They have also just in the past year or two set up a High School Asperger's class on the same model.

I fret at times because it can be a bit too isolating, but I figure we can ask for more inclusion as he wants that (which he is beginning to do).

Hi RAJ. Looking over your post again, I realize you were not looking at the complete article when you framed your question. You asked: "Does that report segregate the genetic findings by IQ?" and requested a simple yes or no answer.

Looking carefully at the article, I would say the answer is "no". I do not see that they conducted a specific analysis taking into account IQ level, although they did look at "broad" vs. "narrow" diagnoses when analyzing families' genetic data.

The families placed in the "narrow diagnosis" category had to have two or more affected individuals who met the criteria for autism on both the ADI-R and the ADOS. The families placed in the "broad diagnosis" category had to have at least one individual meeting the ADI-R criteria for autism and the ADOS criteria for autism or ASD. At least one other family member had to meet criteria for impairment on the social or communication domains of the ADI-R and meet criteria for at least ASD on the ADOS. (One could guess, then, that you might get less mental retardation in the broader category which could include, for example, individuals with Asperger's or PDD-NOS.)

What they were doing was using a new, large genetic database, and several new approaches, to try to identify which genes may be linked to ASD. Because there is so much heterogeneity (that is, so much variation) in people with various types of ASD, they were trying techniques that might remove some of the confusion from genetic data. They weren't claiming a major finding, as in "We've found the gene that causes autism!" They were mostly reporting, in great detail, how they collected genetic data, and how they analyzed it in several different ways to perhaps narrow the search.

One technique they tried was looking at the data with and without families who had individuals with "copy number variations" (CNVs). (The Wellcome Trust explained, for us non-geneticists, the new understanding that not just single letters, but sentences, paragraphs and even whole pages of our genetic code, can be missing or duplicated, and that's what "CNVs" are. See: http://www.wellcome.ac.uk/doc_WTX034711.html

Another technique was to look at whether a family was only "female-containing" (because those are thought to be more severe than families containing only males with ASD, and may provide a sharper picture, genetics-wise). The two sisters you mentioned represented one of the families with a "copy number variation" --their case was interesting, and discussed because of the link between the gene that was affected and how it interacts with "neuroligins, for which rare mutations apparently generate risk for ASDs and mental retardation."

That family, however, was not part of the main linkage analysis because the strongest linkage --which gave a graph with spikes for a certain suspect chromosomal area (11p12-p13)-- was the one in which they looked at only female-containing families and removed anybody with a known CNV. They said:

"We believe these explorations motivate thorough fine-mapping of the 11p12-p13 region. Modest peaks for linkage have been observed previously for this region, but 11p12-p13 has not been a major focus for discovery of autism risk loci." (pg 324-325 of the article)

In effect, they are winnowing down the genetic haystack to try to get closer to finding the needle they hypothesize is buried somewhere inside.

Hi RAJ!

I have the article you refer to in hand, but realize that I am going to need some help answering your question, as I am not a geneticist and these topics get very complex, very quickly.

I'll investigate and get back to you!

Wandajbrown: Welcome and thank you for your post. I'm sorry you've been through so much difficulty, and hope the information on the IAN Community website can help. One thing I can suggest is reading through all the material in "About ASDs" and "Challenging Behaviors" --that should give you a good feel for whether your son has some of the traits described for children on the autism spectrum. (Notice I said "some." Nobody has all the traits --children can vary quite a bit from one another.)

You can find these sections here:

About ASDs: http://www.iancommunity.org/cs/about_asds/

(Read about Autism, PDD-NOS, and Asperger's Syndrome, since a child with PDD can be sort of "in between" Autism and Asperger's, with traits of either or both.)

Challenging Behaviors: http://www.iancommunity.org/cs/challenging_behavior/

It is common for children on the autism spectrum to receive other diagnoses like ADHD on the way to their autism spectrum diagnosis. Many have attentional problems, hyperactivity, meltdowns, anxieties, etc. There is a chart about this included in the first IAN Research Report:

http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_may_2007

There are also parent comments about this topic in our Discussion Forum under IAN Research Findings, and then "Children with ASDs and Additional Diagnoses."

You are definitely not alone! I wish you the best, and hope this information will be helpful.

Hi, bearsmiss!

I am so sorry to hear that your young son with ASD also has to struggle with seizures --those can be very scary and upsetting for both parent and child. Your local physicians will have to decide exactly what type of seizures, and how to treat them, but I can provide some general information.

Epilepsy is defined as two unprovoked seizures. So if a person has had more than one unprovoked seizure, you could say they have epilepsy. In people with autism, seizures often occur either before 5 years of age or after 10 years of age, but they may begin at any time.

We're not sure how many children with ASDs also have seizures. Various studies have placed it somewhere between 20 and 33%. So far, 8% of children with ASDs taking part in our IAN Research study have reported seizures. That number goes up to 12% if we look only at children age 10 and over. (Since some children don't develop seizures until later, it is more accurate to look at older kids to get your percentage.)

For many parents, it is difficult to get the information they need during hurried and stressed medical appointments. Still, I would urge you to ask your doctor to explain exactly what he means by "on-set seizures" and anything else you want to understand better. You might start by saying, "Doctor, it's very important for me to understand what is happening with my son. What do you mean by 'onset seizure'?" (or whatever your question is). If you ask clearly, showing how important the information is, and the doctor does NOT provide a good, patient answer, you may want to consider finding a doctor who will communicate better with you.

Sometimes it helps to go to the appointment with your questions written down, so you can hand it to the doctor and he or she can see the list. It also gives you somewhere to write down the doctor's answers to help you remember what he or she said later.

My best wishes to you and your son.

An update to my last post! Dr. Cynthia Molloy, one of the authors of the paper on "Elevated Levels of Growth-Related Hormones in Autism and ASDs" referred to above, has sent us an answer to Missbennett's question.

Missbennett had wondered if the researchers who found boys with ASDs were heavier had taken into account the fact that some meds given to treat symptoms of autism have weight gain as a side effect.

Dr. Molloy answered:

"In the analysis, we accounted for appetite stimulating medications such as Risperdal in two ways. First, within our case group, we compared children being treated with such meds to those who were not treated and found no differences between them on height, weight, or Body Mass Index (BMI). However, BMI was, on average, higher in children with autism than in the controls, so we included BMI as a co-variate in the analyses to be sure the case-control differences we were seeing were not just because the kids with autism were bigger."

So, the answer is YES. The researchers did take into account meds that can lead to weight gain in their analysis.

Missbennett: I read the actual article in Clinical Endocrinology, and could find no mention of whether they took into account meds that have weight gain as a side effect (like Risperdal). The kids were between the ages of 4 and 8, so perhaps not many would be prescribed these meds yet, but I don't know that for sure.

I actually met one of the authors of this article at the IAN Research Conference held last week --so I will see if I can find out for you!

Rebsmom wrote:

I would like to hear from someone who has had their child take clonidine. Did it help your child? What were the side effects?
Thanks.

Hi Rebsmom. I thought you might like to know that, looking at the IAN data so far, clonidine is being used by 165 families participating in IAN. It is the second most popular "mainstream" medication, next to Risperdal, which 269 families are using. (We have not yet analyzed the families' experiences with the meds, however. The most interesting data on that will come when we have longitudinal data --that is, data collected over time-- to see which treatments families stick with, and which ones they drop, and for what reasons.)

As a parent myself, I know how difficult it is to make decisions about the use of meds. I will be interested to hear about other parents' experience with this one. It might be helpful if they identify what symptoms they are targeting with the clonidine: sleep? lack of focus? (Clonidine is prescribed for a variety of things, from high blood pressure, to ADHD, to tics.)

There are cautionary words in RAJ's post that we should all note, especially as we try to think critically about ASDs. This applies especially to us parents --and, as many of you know, I am one of those, too. Basically...we need to acknowledge that we might tend to "see ASD everywhere" because it is such a vivid and dominant part of our own lives. The same might be said of therapists who treat it all day!

I myself try to be critical about what I think of as "broad autism phenotype" versus simply "eccentric," for example. On the other hand, I think many of us do become adept at "knowing it when we see it." There is a definite quality to the social disconnect that is part of ASD.

Thank you, missbennet, and I think you make a good point here, as far as genetics and our families. One thing I hope an understanding of autism and genetics will give people is a deeper understanding of, and empathy for, others in their family (or maybe even themselves) who have autistic-like traits associated with the "broad autism phenotype." By this, I mean things like social anxiety, a detail-oriented/see the trees not the forest processing mode, an obsessive special topic, etc.

Hi gramma!

Thank you --and thanks to all those participating on the forums-- for posting your questions. I am eager to bring all of the concerns families have raised to the researchers attending our upcoming IAN Research Conference!

As for the GFCF diets, many parents are using them --they are on the top twenty list of treatments used by the families participating in IAN Research. (See our first ever Research Report: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_may_2007)

On the other hand, research studies have not so far provided much evidence that the diets work. (By which I mean there has been no "Eureka!" --we put children on these diets and we see convincing and consistent evidence that it helps every time we study it.) You can read about what we know so far about GFCF diets here: http://www.iancommunity.org/cs/what_do_we_know/special_diets

Your question is very insightful, because in wondering about whether children with allergies are helped by the diets, you are really asking if kids with a certain profile may benefit from a specific treatment. That is a question we hope researchers will address!

I will be interested to hear about the experience of parents who have tried the diets...and to hear if allergies or other sensitivities were part of their child's profile.