Questions for Dr. Paul Law

Dr. Law,
I had the pleasure of seeing you at the Autism Speaks Leadership Conference in Washington. I am so excited about this project! I think it truly will move us closer to the answers we are all desperate for!

I have filled out the questionnaires for all 7 of my family. I was wondering after doing this, if you were going to ask questions about two things that have interested me...1) Do many parents note that their children with little communication, actually communicate well when they have a high fever? (sounds weird, I know, but my little guy uses complete sentences when he is over 103 degrees) and I have spoken to several parents who note the same. and 2) How many children were actually induced using Pitocin to hasten labor? This is another thing I have heard from many moms.

Thanks,
Sharon
Southwest Florida
Autism Speaks
Co-Chair

Dear Sharon,
First, thanks for your endurance in completing the IAN questionnaires for such a large family.
* Fever definitely seems to affect everyones behavior. I remember enjoying (at some level) the times when my son with autism was sick because he became more affectionate. While the effect of fever on autistic kids is difficult to study, Dr. Andrew Zimmerman here at KKI has been doing just that. Here is a link to a description of his work. http://www.jhsph.edu/cadde/Presentations/IMFAR05.html

* On June 19th in Baltimore we are hosting a conference for researchers from all over with varied backgrounds. During this conference, we will develop several additional questionnaires including one about pregnancy history. I am sure that the issue of pitocin (while it has been studied many times) will come up.

Dr. Law,

Would you be able to provide me with any information about the minocycline trials that are being conducted at Johns Hopkins? Any insight would be greatly appreciated. If you wish you can provide me with your response via email at autismcosupport@gmail.com if you feel that is more appropriate.

Hi, Samsdad!

I will email you this information, as well, but just so everyone reading can be informed:

IAN Research will soon play a role in helping link researchers and families. In the meantime, and in addition, if you are interested in participating in clinical trails, the best place to look for them is at www.clinicaltrials.gov.

There is an easy search function there that will permit you to find clinical trials recruiting to test treatments for many disorders or diseases.

For example, the trial asked about is called "Minocycline to Treat Childhood Regressive Autism", and you can read about it at: http://www.clinicaltrials.gov/ct/show/NCT00409747?order=1

I thank you sir!

Dr. Law do you have any figures or stats on the odds of having another child diagnosed with ASD if you already have a child on the spectrum? I have heard numbers anywhere from 4-40%. Also any stats on immediate family such as parents, couins, grandparentd, uncles, and aunts??

Hi J&JMom. To answer your question, we do know that siblings of children with ASDs have a risk of developing an ASD themselves higher than that of children in the general population. The rate of autism in siblings of children with autism is usually given at somewhere between 3% and 6%. This is a bit different than the recurrence risk (which is the risk to later-born children) that has been given as about 8.6%. (I'm taking these figures from a recent article, by the way: "Studying the Emergence of Autism Spectrum Disorders in High-Risk Infants: Methodological and Practical Issues," by Zwaigenbaum and colleagues, published online 2007 by the Journal of Autism and Developmental Disorders.)

What this means for those of us who are the parent of a child with an ASD is: we need to be aware that our other children might face some difficulties, too, and need to keep a close eye on their development and learning. Many studies --and even some of our preliminary IAN data-- show that even those siblings who do not actually have an ASD still may experience other learning or speech problems.

As for other relatives, I do not know the risk, there, but there is evidence that autistic traits do run in families. This collection of traits is called the broad autism phenotype. There's a bit more about this on our website under "Insights from Genetics" at: http://www.iancommunity.org/cs/understanding_research/insights_from_genetics

Thank you Dr. Law. I appreciate your information. I have two children, a brother in law, and a nephew on the spectrum. We also have a nice with dsylexia and a nephew with ADHD.

I want to mention I did not fill out the pregnancy questions in the questionnaire because we are adoptive parents. I have some information, but I would hesitate to answer the questions as if I were the biological mother. At one point there is a place that asks whether we are biological or adoptive parents. But then the pregnancy questions are still presented to me.

Hello, worriedmom.

To answer your question, an adoptive mom should answer the pregnancy questionnaire just as herself. The first question is "How many times have you been pregnant?" If you haven't had any biological children of your own, and you enter "0", the rest of the questionnaire will just disappear.

If you have biological children of your own, you will say how many, and then continue on to answer the questions.

What we don't have adoptive moms do is try to answer as if they were the bio mom (assuming they know something of the history). For one thing, the bio mom has not consented to be part of the research study, so there is little information we are permitted to gather about her.

We do have a number of adoptive moms in IAN, by the way, and your data is just as valuable as that of the bio moms. For one thing, it gives us an important comparison group --moms who are raising a child with autism but who have no genetic connection. As we look at various issues in the families of kids with ASDs (like learning difficulties or depression or ADHD), having a group of parents who are not genetically linked, but do live with the stresses of raising a child with autism, is really important.

Hi,
I have a question about labels or diagnosis, we have heard everything , autism, asperger's, PDD-NOS, apraxia, etc. Then we discovered information about mercury (thimerosal) poisoning. Testing showed that my son was in fact, full of mercury. Through treatment for toxin removal, he has lost almost all of his autistic behaviors. Does that mean that he does not have autism, asperger's,etc.etc. He is receiving services through the school system under the label of autism, should I push for the school to change their policies to include "Mercury Poisoning" as a reason for services or just leave it as autism?
Sincerely,
Jennifer

Hi AARfan. Thank you for sharing your interesting story.

Because of the nature of our project, we are not able to give medical, educational, or treatment advice in this forum. To get the best education for your child, I recommend that you work with professionals in your area to get an accurate diagnosis that will help you get the services your child needs.

I hope you know that you are very welcome to join IAN Research, if you haven't already. Children who recover from autism, and those that nearly do, are of enormous interest to researchers. Their information is important to include in our data.

In any case, I wish you and your son well.

Dr. Law,
The New York Times recently featured an excellent article on Autistic girls and how little research there is on this population of autistic children. Everyone knows that Autism is more prevalent in boys than girls. However, it seems as though when girls get it, it manifests itself differently. As the mother of an autistic girl, I feel that more research is needed in this area. So my question is, Is the IAN Project planning on including more questions for the parents of girls in your next round of questions?
Thank you so much for your time!

Hello, Rebsmom.

We hope very much that researchers will be able to use the IAN data and subject recruitment to learn more about girls with ASDs. One way IAN can contribute to this important topic is by helping researchers find girls with ASDs. Often, they are able to recruit so few that they either leave girls out of their studies, or can't draw very specific conclusions because the numbers were so small.

One problem, though, is the entire debate over whether girls with ASDs are underdiagnosed because they simply behave differently than boys do. IAN can't help so much with that issue because un-diagnosed girls would not be taking part in IAN.

Still, we do have over 600 girls whose parents have completed the IAN questionnaires, and that is a place for researchers to start. I don't yet know if we'll have a separate questionnaire for girls. Certainly, we will design all questionnaires to try to provide interesting information by gender. (So, say we had a questionnaire that included a topic on special interests. We would have to be careful not to just put trains or Pokemon or other more "male with ASD" special topic choices, but to include those that girls have been observed to choose, like horses or other animals.)

If we find there are many issues specific to girls, however, I could see creating a "girls only" questionnaire.

Dr. Law,
The report that just came out was very interesting! I would love to know state by state who is getting one-to-one assistants for their children on the spectrum. It seems to be that here in Florida, it is nearly impossible to get a 1:1, and if you do in my county at least, it is only for the children with Asperger's. I just think it would be interesting to see a breakdown of services received.

I also was wondering as far as the Depression in mothers of kids on the spectrum...I know people will laugh, because my whole group did when we talked about this, but did you ask if they were diagnosed before or after their child was diagnosed on the spectrum? Sort of a which came first, the chicken or the egg, so to speak.

Thanks for all you do! Keepfighting, I know I will!

Sharon
co-chair
Southwest Florida
Walk NOW for Autism