Latest posts for the topic "Dr. Law Explains the IAN Project" recent IAN discussions

Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

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!

Re:Dr. Law Explains the IAN Project

Sue — GMT

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.

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tsylvester — GMT

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.

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

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.

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

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

Re:Dr. Law Explains the IAN Project

tsylvester — GMT

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.

:D Da wife just rolled on the floor over the spoon! (yes she is still collecting them). We will call next week.. :wink:

Re:Dr. Law Explains the IAN Project

Zenmother — GMT

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.

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

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.

Re:Dr. Law Explains the IAN Project

Samsdad — GMT

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.

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

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.

Re:Dr. Law Explains the IAN Project

Samsdad — GMT

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

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

Thank you so much for your encouraging words, Samsdad. :D 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.

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Pamster — GMT

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! :D

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

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.

Re:Dr. Law Explains the IAN Project

LuckyTwice — GMT

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?

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nanc2758 — GMT

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!

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

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.

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

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 :D 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.

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

Samsdad wrote:

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

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.)

Re:Dr. Law Explains the IAN Project

agenta — GMT

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

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

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.")

Re:Dr. Law Explains the IAN Project

cyberscan — GMT

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.

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

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.

Re:Dr. Law Explains the IAN Project

kat_mom2_2 — GMT

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

Re:Dr. Law Explains the IAN Project

Paul-IAN Director — GMT

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.

Re:Dr. Law Explains the IAN Project

Max — GMT

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?

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Dr. Paul A Law — GMT

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.

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wstepmom — GMT

I'd like a report of what can be expected in the various degrees of autism; what the children can be expected to achieve. For example, my niece has Aspergers and she's driving and went to junior college; but is not able to live on her own. It would be nice to have mile-markers for the various age groups and degrees of autism and what they have achieved at the various levels.

Re:Dr. Law Explains the IAN Project

Dr. Paul A Law — GMT

Hi wstepmom. :) I understand how much parents want to be able to know what their children with ASD will be able to achieve (or not) as they grow older because I am a parent, too! (I have a teenage son on the spectrum.) It's not really possible to do this in any definitive way, however, because each person with ASD is so different, even if they have the same ASD diagnosis. For example, a child with Asperger's may have a very high IQ, or just an average IQ; an accompanying severe anxiety disorder, or no anxiety; attentional issues, or little problem with the ability to focus. What a person finds the most challenging out in the world will, in part, depend on all these factors, and many more. This will also determine the type of support they need, from none, to someone just to check once a week that their clothes are clean and their bills are paid, to fairly constant supervision. The good news is that many individuals on the autism spectrum do make gains in social understanding, self-regulation, and many other areas, whether through treatment or just ongoing development and growing maturity. The bad news is that, even for the most able, grown-up life can be very challenging. What is often heard from adults with ASD and their parents is that the work place is the most challenging venue of all for those who are able to go to college and will not be in a "sheltered" work situation. Part of the solution for this will be research, including "service epidemiology" - finding out which programs, supports, or policies help adults with ASD and which do not. Part of the solution will be the ongoing advocacy efforts of adults with ASD, their families, and advocacy organizations. By the way, when the new psychiatric manual, the DSM-V, comes out, it will be eliminating PDD-NOS, Asperger's, and Childhood Disintegrative Disorder, all of which will be subsumed under "Autism Spectrum Disorder." See: http://www.dsm5.org/ProposedRevisions/Pages/InfancyChildhoodAdolescence.aspx I believe the intent is to look at each person's functioning on many levels and describe their ASD that way rather than using these other categories which researchers have not been able to find a biological basis for. In other words, researchers have not found any genetic, neurological, or other biological difference that distinguishes a person with Asperger's from a person with autism except for IQ.