Messages posted by: Paul-IAN Director

Hi blessedmom.

The hypothesis that the administration of pitocin during labor might be linked to autism in a child is fairly new. It has not been fully tested yet. See: http://www.ncbi.nlm.nih.gov/pubmed/15288368?dopt=abstract

One small study looked at this and found no evidence of an association between the use of pitocin and autism: http://www.ncbi.nlm.nih.gov/pubmed/12757361?dopt=abstract

(When you see the word "oxytocin" in these articles, keep in mind that pitocin is synthetic oxytocin. You can think of them as very similar things.)

We're working on a Pregnancy & Birth Questionnaire for IAN, and you can bet that we will include a question about induction of labor and the use of pitocin!

Hi Eric R.

To answer your question, it is fine for adoptive parents to answer all the questions in IAN. Researchers analyzing our data will be able to tell which parents are adoptive and which are biological, and separate those out depending on what they are studying. For example, if you have a hypothesis about something genetic, you need to note this difference; if you are studying family stress, you don't.

Actually, having information from adoptive parents can be very helpful as it offers another case - a case where people are in the same family and environment but don't share the same genes. That can be useful!

So I hope you will participate in IAN - we can definitely use your data, and will value it.

Being part of IAN is also a way to become notified of other studies, as we serve as an autism research recruitment registry. Genetics researchers might not contact you, but other researchers would.

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.

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.

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.")

Caro, hi. Yes, we are going to be including individuals age 18 and over in IAN. We are working on an Adult with Autism Spectrum Disorder version of IAN. It's a complex task, partly for legal reasons such as some adults with ASD are under guardianship and some are not, which means we need two separate consent processes. ("Consent" is when you give your permission to be included in a research study.)

In any case, we have heard from many, many people --adults with ASD and their parents and other supporters-- that adults want to be included in IAN, and we are working on it.

Make sure to subscribe to the IAN Community e-newsletter, if you haven't already, because we'll certainly announce the Adult version of IAN there once it's all set. We're hoping to have it ready sometime in 2008.

Hello Sharon, and welcome back.

Looking at use of one-on-one aides by state is a terrific idea, and I will suggest to my team that we include such an analysis in our next Research Report. (We haven't looked at this yet, but it should prove interesting.)

As for your questions about mothers and depression, we still don't know if depression runs in these families or is mostly situational, coming only after a child's ASD. A Maternal Depression Questionnaire is in development, and will help us to determine when mothers experienced their first episode of depression --after the birth of their child with an ASD or years before.

Hi 4JAZ, and welcome to IAN.

This is a very good question and the World Community Grid is a really neat way for individual people to contribute their computer's processing power while they are not using it. This resource is very helpful when researchers are running analyses that are extremely computer intensive. We have a couple of researchers who are starting to use IAN who may need this kind of super computing power to do intense data mining. So far, the core IAN Research team does not have this need, but it is coming!

For anyone interested in learning about the World Community Grid, you can visit their website at www.worldcommunitygrid.org

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.

Hi Michelle.

I'm afraid we do not yet know exactly what link there may be between ataxia --which is the loss of ability to coordinate muscular movement-- and autism spectrum disorders. We DO know that many individuals with ASDs have motor issues. (Nearly half the children in the IAN Research study have been diagnosed with some sort of motor delay, for example.)

One Swedish study did begin to look at how congenital ataxia (meaning ataxia a person was born with) and autism might be associated, but we still have no clear cut answers about this. (To read the abstract of the Swedish study, google "ataxia autism Ahsgren" --the title of the article is "Ataxia, autism, and the cerebellum: a clinical study of 32 individuals with congenital ataxia." It was published in the journal Developmental Medicine and Child Neurology.) (I tried to put a link in for you, but it was so long it broke the Discussion Forums formatting!)

To my knowledge, there has been no link yet found between ataxia which develops in a relative later in life and ASD in a child.

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.)

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.

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.

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.

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.