Dr. Law Explains the IAN Project

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!

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.

Hey Paul, a blast from the past, how are you and the family doing? We are getting a long, if you remember, our son & your's used to be playmates. Thank you and Kiely for putting your knowledge into this field, we just found your website and look forward to using it. Keep up the hard work, we will be around.

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.

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.

Da wife just rolled on the floor over the spoon! (yes she is still collecting them).

We will call next week..

Hi Dr. Law,
I also have a teenager with autism; he also has William's Syndrome, and is partially paralyzed. He is a most amazing young man as are most people who have ASD.
I am very curious and excited about this project: what kind of data do you expect to be collecting? How can we help?
I am a Family Health Partner for the Fort Myers Children's Medical Service which means I am an advocate for families dealing with a variety of challenges. Not surprisingly, families struggling with ASD comprise a healthy portion of my referrals. I have forwarded this site to many of them, but they will want to know more before they commit even ten minutes that they already don't have to spare. Services for families that have children with ASD are practically nonexistant in this state and there is currently a wait list of about 19,000 to receive waiver services-the only way to get behavioral services here. I know this does not distinguish us from much of the rest of the country and I will keep encouraging them to participate.
Thank you for your hard work and, again, please let me know how I can help.

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.

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.

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.

Thank you for your response Dr. Law. I look forward to hearing more about those new forums. Autism Speaks maybe?

BTW, I really admire what you and your wife are undertaking here. It's nice to see someone who is directly affected by this in the medical community grabbing the bull by the horns.

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.

I echo the sentiments expressed by Samsdad. What you're doing is wonderful and so very needed. I am glad someone is getting this done, because like you've stated, we know so very little about how it happens that finding common factors in data collection results must be an exciting experience Dr. Law. Thanks for keeping us in the loop of information. Keep up the great job everyone!

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, I'm brand-new to the forum and will be eagerly and extensively adding my information via the various questionnaires I've seen. My initial question has to do with how the IAN project is handling information gathering for those families with more than one child having ASD? I have two sons diagnosed with Asbergers and am willing to share as much info as I can to help others/ do research, etc. In my case, despite a 20-month age difference, a lot of info is similar. I anticipate having to enter the data two separate times, but is there (or will there be) research breakdowns showing how many other families with ASD have more than one affected child?