Dr. Law Explains the IAN Project

Thank you and it's about time. I've spent the better part of the last 9 years trying to educate myself to be a better advocate for my child & family.
Have spent countless sleepless nights pouring over the internet. Although I have found many wonderful resources and tools I often wondered why there wasn't a place like this. So many of the support groups I came upon deeply discourage the use of medications and left me feeling guilty for wanting my child to have a better life experiance. As older parents we feel an overwhelming responsiblity to provide him with all the possible resourses to navigate the world when we are gone and he is on his own. You have developed a wonderful thing please keep up the work!

Hi, nanc2758! Again, I have to thank you parents back for helping to make IAN a success. I appreciate your words of encouragement about IAN, and the information we are trying to share. I believe many parents want to know the facts about what we know...even when the truth is we don't know enough about most aspects of ASDs. In fact, my own frustration with how little we know is what led me to develop IAN in the first place.

As for support groups, as a parent myself, I have seen how sometimes they can be wonderful and sometimes...not so much. Each one has its own group chemistry and even belief system, so I find parents sometimes have to search to find one that "fits" for them. Others find one good friend in the same boat is all they need for support, or use the internet to connect.

LuckyTwice wrote:

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?

Hi, LuckyTwice

We'd love to have you tell us about each of your sons with Asperger's! It is not that unusual for a family to have more than one child on the spectrum, and we will be reporting in the future about how many families like that we have participating.

As you begin the IAN questionnaires, you just choose either of the kids with an ASD to list, just to establish your eligibility for the study. When you are creating your Family Profile and add the second son, it will let you select that they also have an ASD. Remember, if you get stuck anywhere in the process, you can email us at researchteam@IANproject.org or call us at 866-348-3440.

Samsdad wrote:

I look forward to hearing more about those new forums. Autism Speaks maybe?

Yes, and I had promised to let you all know when Autism Speaks unveiled their new message boards! They just did this past weekend. If you are interested in visiting an ASD Discussion Forum that is more general than the research-focused forum offered here at IAN, please check out the new Autism Speaks boards at:

http://www.autismspeaks.org/community/forums/index.php

But please remember to visit the IAN Forum, too, to share your thoughts about IAN Research findings, or to tell us what topics you think researchers should focus their energies on. (We are actually telling researchers about what you say on these Forums, so it's a way you can truly have some input.)

Dr. Law,
This is such a huge undertaking! The IAN network is amazing and a necessary. Since our 8 year old was diagnosed last year w/PDD-NOS & ADHD I have been doing alot of reading/dectective work. I have him on an Rx but want him off of it ASAP. So we changed his diet and are now as organic as possible.

Recently he was re-examined by his Neurobehaviorist and an MD ASD specialist. They both said they don't see the PDD,now,but they do see OCD and the ADHD. We feel this is an improvement.

My qu. for you is: What information is the IAN network working on re: the DAN networks bimedical findings. Testing blood, urine feces for intolerances etc. IGG testing and so forth. We are commencing with such testing but we are in the very beginnings. It is exciting. It is also new and not rec. by our pediatrician, other mothers of ASD kids or our provider(s)of behavioral support services. Go figure!

So many are so closed to trying a new "avenue" for healing. Our pediatrician even has a child w/ autism and never rec. it in our son and won't hear of alternative healing methods or alt. causes. It surprises me. One beh. professional (who shadows ASD kids) told me "Diet didn't cause and cannot cure it"
I don't follow this logic, nor does the DAN network

More research has to be done.

Sincerely,
Agenta

Hi agenta.

As an online research project, IAN is collecting information from parents all over the country, and one of the types of information we're collecting is about treatments. Because everyone, with whatever treatment philosophy, can participate we are receiving reports on all sorts of treatments, including those recommended by DAN physicians. For example, if you look at our listing of treatments used most frequently by families participating in IAN, gluten and casein free diets are among the top 15.

http://www.iancommunity.org/cs/ian_treatment_reports/overview

We hope to influence research priorities by sharing this information with the research community. Clearly, the treatments in which families are most investing their time, hope, energy, and money should be investigated soonest. It is so important not just to figure out what works, but for which groups. (It is possible, for example, that a treatment such as a specific diet might work well for a child with one type of profile and do nothing for a child with a different profile. Again, if there are different "subtypes" of autism, we may find different things work for different "autisms.")

Hi, I'm an adult who is a high functioning autistic. I was wondering if there is any way I could provide data to the research community.

Welcome, cyberscan.

We are working on an "Adult with ASD" version of IAN right now, so you will definitely have a chance to participate in IAN and provide your information to researchers. If you subscribed to the IAN Community e-newsletter when you joined the community then you will hear about the launch of the first adult questionnaire when we announce it there. We're not sure yet of the timing, but this is a high priority.

There will be an entire series of adult questionnaires. The first one will be fairly basic. It will include demographics and diagnosis (things like race, gender, age, whether you have autism or Asperger's, etc.), as well as a research priority survey. Through that survey, adults with ASD will be able to tell us about their priorities so we can plan which in depth surveys to launch next. Possible topics include things like employment, services received, living situation, relationships, other medical conditions (as well as healthcare issues like whether you have insurance or can get the care you need), etc.

By registering to participate in IAN, adults with ASD will not only provide data, but also become part of a research registry. That means researchers seeking participants for their studies tell IAN what they need --for example, "100 adults, age 20-40, with high functioning autism or Asperger's who live within 100 miles of Stanford University." We contact all our participants who meet that description, share information about the study, and leave it up to them whether they would like to contact the study or not. This process gives individuals with ASD more opportunities to participate in research, and helps researchers find the people they need to accomplish their work.

I think I may have made some errors when completing some of the original questionaires. Is there a way for me to go back and correct my answers. Is research being done on teens and preteens who were misdiagnosed early on so could not receive effective early intervention. It is so difficult to find appropriate therapy for my 12 year old. In my area, Dr's and therapists who understand adolescents on the spectrum don't accept medicaid...and those who accept medicaid say the can't treat my son

Hello kat_mom2_2. You were asking about how to correct information you have entered in IAN Research.

Except for treatment data, we can't yet update items that have simply changed with time. (So if a child really was nonverbal when a parent filled out IAN questionnaires, but they're verbal now - we can't change or update that info.) We are working on this, however, and will have update capability in the future.

If something you entered in your IAN questionnaires was just plain wrong even at the time you entered it, you can contact the IAN Research team, at researchteam@kennedykrieger.org, to request assistance in correcting this. (For example, we've had parents accidentally put that they themselves had an ASD, instead of their child - something that definitely needs correction.) Just write us and let us know which items were inaccurate, and how we can contact you.

I don't know if anyone is researching impact of late diagnosis on teens and preteens, in terms of missed opportunities for intervention. We do know that the higher functioning children - particularly those with Asperger's -- often go misdiagnosed or undiagnosed for much longer than children with autism. See our research report on that topic, here:

http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_sep_2007

I'm sorry to hear about how hard it's been to get appropriate intervention - that occurs all too often. One thing we hope to do with IAN is provide data to advocates that shows this kind of thing, and helps them convince policymakers of changes that need to be made.

Do you share in the monstrous views spread by the autismspeaks anti-autistic-people propaganda... or is that merely an unfortunate connection?

I am not sick, I am not broken, I can not be cured of being who I am, not any more than I could cure you of being who you are.

I am autistic, and autismspeaks does not speak for me.

You do appear to be more genuinely benevolent though, seeking understanding, and I must credit you for seeking input from autistics themselves.

I've just got a raw spot about the horrific way I've been presented by sites like autismspeaks, it takes a lot to offend me, even more to inspire hatred, and I honestly despise the people who espouse that sort of hatespeech against autistics.

We are not merely people who are afflicted with autism, autism is a part of who we are. So when you paint autism as this ugly monstrous thing, you're painting us as ugly monstrous things as well.

Perhaps this could be impressed upon the autismspeaks group somehow?

Hi Max, and thank you for posting.

I just wanted to say that I have noticed a real change taking place. The major autism advocacy organizations around the country, including Autism Speaks, as well as people who work with children or adults on the autism spectrum, are becoming more and more aware of the idea of "neurodiversity." When I am speaking with researchers, advocates, policy makers, teachers, therapists, or families I often find a growing appreciation for the strengths of people on the autism spectrum.

At a recent autism event I was at, one little boy was wearing a shirt that had on it, "Autism Pride" and "Eye Contact Is Overrated." One of the cars had a sticker on it that said, "Awe-tism." Although there is still disagreement about the word "cure," there is more and more agreement about the need to increase appreciation and acceptance of people with ASD in the larger society.