Messages posted by: Paul-IAN Director

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, Pamster! It is definitely very exciting to see the data start pouring in. Our next task is to help researchers learn about and access this incredible resource parents have provided.

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

Thank you so much for your encouraging words, Samsdad.

And, yes, it is Autism Speaks that is working on a more general discussion forum. We'll let everyone know when it is ready to premiere.

Samsdad wrote:

Are there any plans to expand the topics to include different ASD-specific discussions and treatments? Maybe see about starting a parent-based Wiki that could serve as a resource for parents?

The reason why I ask this is because there really is no definitive group or site for parents to obtain information and discuss what they know. At least none that I've seen.

Hi Samsdad!

The IAN Discussion Forum is meant to focus mostly on research topics, questions, and issues, but that still leaves a lot of room for more topics. IAN Research is covering a lot of territory --everything from treatments to early development to co-occuring diagnoses to mothers and fathers and their health histories. I would be very glad to hear what topics you would like to see explored.

From what parents are telling us, there is truly a need for a more general, parent-to-parent information, advocacy, and support forum out there. There are some of these (in chat and messageboard format) around the web, plus we have heard of other autism-focused organizations that are currently working on developing such forums. I will be keeping track of that, and making sure to announce any new more general forums that come online so that parents have somewhere to go when our IAN focused forum does not meet a broader need.

Zenmother:

I am so glad to hear of your interest in the IAN Project!

To answer your question, we are collecting data on family history, diagnoses, treatments, services received, and a host of other topics. You can actually look through our basic questionnaires on the Community website at:

http://www.iancommunity.org/cs/ian_research_questions/ian_research_questions

Not only can you see what is being asked, you can also look through some of our very first results on this page. Please do note: these questions are just the beginning. We will be developing many more questionnaires on various aspects of ASDs.

You had also asked about helping to get the word out about IAN. We have just put up a sample "info" e-mail and brochure order form at:

http://www.iancommunity.org/cs/about_ian/spread_the_word_about_ian_overview

Thank you so much for your enthusiasm. I wish the best to you, your son, and the many people you are helping.

Thank you for posting this letter that you wrote to me. It is helpful to have the input of adults on our current research for kids and as we consider expanding IAN to include adults. I hope other adults with ASD will join in and tell important parts of their story.

Dr. Farmer, The Missouri Department of Mental Health and other state agencies in MO and I are working to make sure that IAN data is organized in the best way for states to make better strategic decisions. If you follow the link below and find the abstract with Dr. Farmer's and my name on it you can get the general idea.

http://www.cevs.ucdavis.edu/Cofred/Public/Aca/WebSec.cfm?confid=281&webid=1514

Sue wrote:

Why are you not including adult ASD's in your research? My son is 24 and there is little know in the field about helping him to work and participate in the community.

Dear Sue: We have not yet included adults with ASDs in the research project, but definitely plan to in the future. We will also be adding more and more content to the IAN Community regarding adults, so please keep checking back. At the moment:

There is a Discussion Forum where adults with ASDs and their supporters can comment on what they hope to see accomplished via research. There is also a link within that forum to the new "Guide for Transition to Adulthood" published recently by the Organization for Autism Research (OAR). In fact, here is the link again: (scroll down and then click to read/print the .pdf): http://www.researchautism.org/resources/reading/index.asp

Several parents on the IAN Staff (including myself) have young teens on the spectrum, so we share your concern about issues involving teens and adults, not just from a professional standpoint, but from a personal one.

Best Wishes,

Dr. Paul Law

Dear Tsylvester. Of course I remember. In fact my wife and I still have a spoon that we bought for you on one of our trips overseas. Please call the office sometime so we can catch up -443-923-4148. I hope your family is doing well.

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.

One of my biggest interests is in how states (by states I mean everyone from the state agencies to advocates and parent groups) can use data collected on IAN. In fact, I am working with the state of Missouri to set up a model program. One issue I have taken a peak at is delay in diagnosis by state. Even though we have only 1,100 families registered so far, there seem to be some obvious trends that some states are doing better than others. For IAN to work well for these types of services delivery issues, we need large numbers of people form every state to get involved.

Thank you for participating and placing some of your hope in my team.

My name is Dr. Paul Law, and I am the Director of IAN: the Interactive Autism Network. I welcome you to IAN!

I am very excited about this project. We still know so little about what causes ASDs, or how to treat them. IAN is meant to change that in several ways:

1) By collecting the largest ever set of data on children with ASDs --provided by their parents over the Internet.

2) By helping scientists find individuals to take part in their autism-focused studies.

3) By building a community of all of those interested in autism research: individuals with ASDs, families, educators, health care providers, researchers, etc.

It is a very ambitious undertaking, and I'm sure many of you have questions about some aspect of IAN. I invite you to post them here!