Messages posted by: Connie (IAN Staff)

Hi macsmommie. Welcome to IAN!

I think many parents with kids with ASDs can relate very much to "tired" --in so many senses of the word. (From tired of fighting to figure things out or get the right services to just plain physically and emotionally exhausted.) I was not at all surprised to find the 45% of moms in IAN Research have been diagnosed with or treated for depression --and that number has stayed consistent from the time we had a few hundred moms to now when we have over 2,000. (There's a discussion about that over in the IAN Research Findings forum.)

Thank you for offering your help to the project --the offer is much appreciated! One thing you can do to help is spread the word. The more people participate, the more data and families researchers will have to work with, and the more hope we have for answers. You can visit the "Spread the Word" page here:
http://www.iancommunity.org/cs/about_ian/spread_the_word_about_ian_overview

Hi concern4son.

Unfortunately, we at IAN aren't able to offer medical advice. (I, for one, am a sociologist and family therapist by training.) Having said that, it does seem like a long list! Perhaps other parents can comment on what they are giving their kids, and how they decided to choose various vitamins or supplements. And have they ever decided to abandon one they were giving? How did they decide?

One thing the IAN data will help us do, over time, is understand exactly what parents all over the country are giving their kids. That will be helpful when parents are trying to compare what they are doing with what others are doing.

I don't know how well your pediatrician works with you on these issues, but there is an online article for pediatricians in Contemporary Pediatrics explaining what "Complementary and Alternative" therapies (including vitamins) parents of kids with ASDs are using, and how to work with parents interested in them:
http://www.modernmedicine.com/modernmedicine/article/articleDetail.jsp?id=139789

This might be a something to provide the pediatrician if he or she is not that familiar with ASDs and some of the treatments and therapies, especially the "alternative" ones, that parents are using.

J&JMom: That is wonderful. We appreciate your efforts to spread the word very much. Our immediate goal is 10,000 children with ASDs in IAN Research, and we still have a long way to go!

Everyone: For more ideas on how to get the word out about IAN, check out our "Spread the Word" page here:

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

Thank you all so much!

Many children with Autism Spectrum Disorders (ASDs) have, at some point, been diagnosed with or treated for another disorder. Our preliminary IAN Research data shows how many, and how this varies by type of ASD diagnosis: Autism, PDD-NOS, or Asperger's Syndrome.

Review the data here:

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

Some important questions as we go forward will be: To what extent did children receive these other diagnoses on the way to their current diagnosis? (In other words, was an inaccurate diagnosis then replaced by a more accurate one?) To what extent do children actually have more than one full blown diagnosis --or issues so severe in terms of lack of focus, hyperactivity, or mood problems that they are treated for such? And what explains the high number of such diagnoses or treatments being given to children with Asperger's Syndrome?

Based on your own experience, what do you think?

Ant: It is not uncommon for some children with ASDs to have very uneven moods, and be on a kind of emotional roller coaster. Some are prone to extreme irritability and meltdowns, and some have such severe mood issues that they may be diagnosed with a second condition (like Depression or Bipolar Disorder). Whatever the case, it can be a very difficult issue for parents and teachers to cope with.

You can read a short article about this issue under "Moods and Meltdowns" in the "Challenging Behaviors" section:
http://www.iancommunity.org/cs/challenging_behavior/mood_instability_and_meltdown

Kimberlya: I know how difficult it can be to cope with having a child with an autism spectrum disorder...especially when there is little help to be found where you live. Although it is not much help to you right now, I can say that there are efforts going on at a national level to provide more support for individuals with autism and their families, including the Combating Autism Act and the Expanding the Promise of Individuals with Autism Act.

Families so desperately need more assistance!

Aurua Blue: As someone with a child with AS myself, I truly understand how difficult it can be. It is such a hard thing to explain to teachers and school officials --even relatives or neighbors-- who are not familiar with it. Lots of times, if a kid with Asperger's is able to speak well, and has an OK IQ, others will see his problems as due to just bad parenting, which is awfully hard on parents and shows a true lack of understanding the part of others.

If you ever need materials to help explain AS to a teacher or anyone else, you may find printing some pages of the IAN Community website helpful. There is a lot of information on each of the Autism Spectrum Disorders here: http://www.iancommunity.org/cs/about_asds/

I fear parents often find themselves in the position of having to educate the entire community about ASDs.

Hi concern4son!

This is Connie, the IAN Community Facilitator. I just wanted to point you and other parents to the "Therapies & Treatments" Section of the website where we explore what we know (or, more accurately, don't fully know) about the vast variety of treatments.

Go here: http://www.iancommunity.org/cs/what_do_we_know/overview

There is some basic research based information in this section on a variety of treatments, including "Vitamins and Supplements."

Thank you so much for your post.

One question we are asking in the IAN Research questionnaires is about seizures and epilepsy. As the data comes in, it will be important to find out how many parents are coping with this issue, and how it relates to other issues.

Just to let everyone know, if you are interested in "spreading the word" about IAN, we have developed a sample e-mail and a brochure order form that will help you do just that.

Check it out at:

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

Pamster:

Just to let you know, you are fine to go ahead and use the IAN Logo as a link back to the IAN Project. We appreciate your spreading the word very much!

By the way, we have developed a sample informational e-mail people can send to spread the word about IAN.

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

We appreciate your efforts to get the word out very much.

I will get back to you soon - I'm checking into the situation with the logo!

Thanks so much for your support of IAN.

Hi, this is Connie, the IAN Community Facilitator. I just wanted to stop by and let you know, as you discuss diagnoses, that there is a lot of detailed information on the various categories in the "About ASDs" section of the website. If you are interested in the specific criteria for, and descriptions of behaviors associated with, each diagnosis, I invite you to visit http://www.iancommunity.org/cs/about_asds/

As you will read there, part of the trouble is that we have not yet pinned down "meaningful subtypes of autism" based on genetics or neurology, etc. At present, we just have descriptive categories: a kid that looks like this has "Asperger's"; a kid that looks like that has "autism"; and a kid that doesn't quite fit in one of those has "PDD-NOS." This is why boundaries blur, leaving parents confused and research results muddled. Think of it as mixing apples and oranges and kumquats and kiwis and then trying to draw logical conclusions about the category as a whole. Fortunately, there are efforts underway to identify more meaningful subtypes of autism. See http://www.ucdmc.ucdavis.edu/newsroom/releases/archives/mind/2006/Autism%20Phenome%20Project%20Facts.pdf

Just to let you know... we at IAN hope to have some articles on the Autoimmunity issues relating to autism soon. It is a very important area of research, and it does relate to allergies, as well as neuroinflammatory processes in the brain.

Autism Speaks issued a grant entitled "Does Immune System Dysfunction Play a Role in Autism?" in 2006. The description of the grant reads: "Adaptive immune 'T' cells are summoned by innate immune cells to attack invaders. Immune T cells in some people, however, mistake the body's own tissues as foreign and attack them, a process called 'autoimmunity.' Immune T cells can also over-react to otherwise harmless substances, such as pollen, and produce allergies... A disproportionate number of children with autism have immune system malfunctions that are similar to those seen in autoimmunity, allergy, or both conditions."

So...there is an exploration going on of allergy and autoimmunity in this and many other studies. As mentioned above, we hope to have articles exploring this on the Community site in the future.

bklynkidz wrote:

I also wonder about the impact of SSRI's during pregancy and noticed that the questionaire does not ask anything about medications taken during pregnancy. Just a thought . . .

Just to let you know, one of the questionnaires that the Research Team hopes to develop soon is a more extensive Pregnancy Questionnaire. So...yes! There will be more questions (and, we hope, answers) to come.