Messages posted by: Connie (IAN Staff)

A mom in Canada wrote and asked me to post the following topics she would like autism researchers to address, all of which are related to pregnancy and birth issues:

Amnio

Ultrasound (how often and which trimesters)

Induced Labor

SSRIs (Selective Serotonin Reuptake Inhibitors, like Zoloft, Prozac) before pregnancy and for how long

By the way, one questionnaire under development at IAN is a much more detailed set of pregnancy questions. We will be collecting a great deal more data on such issues than we did in the initial questionnaires.

Just a couple comments to add...

Currently, there is much discussion about epigenetics, which is the study of how environmental factors can impact genes (by, for example, turning them on or off) without actually altering the genetic code. What this means is that there is no longer a clear, hard line between "genetics" and "environment," an either/or split. You can have both operating at once --which makes it all even a more complex puzzle for researchers. In fact, many researchers believe this may be the case with ASDs --that both genetic and environmental factors may be involved.

In any case, we are still so in the dark about what specifically causes ASDs. I know parents often struggle with guilt and blame themselves, even not knowing the cause, but I hope they have been relieved at least of the kind of external, finger-pointing blame that was part of the Refrigerator Mother Theory of autism. (As for how to feel about genes passed down, that is something all modern parents may struggle with, no matter what their child suffers from in terms of negative traits or inherited disease, be it Dyslexia or Diabetes. Do you blame yourself? Do you accept it as random and out of your control? However you cope with it, it's an issue that is part of the modern landscape.)

For those who are interested, you can read about the Refrigerator Mother Theory of Autism here (scroll to the bottom): http://www.iancommunity.org/cs/understanding_research/cognitive_theories_explaining_asds

Hi missbennett.

I have been looking, but have so far been able to find, specific information on the prevalence of ASDs in first cousins. I did find one study that looked for the Broad Autism Phenotype (that is, autistic traits but not the full diagnosis) in a wide range of family members. That article is:

Pickles, A., Starr, E., et al. (2000). Variable expression of the autism broader phenotype: Findings from extended pedigrees. Journal of Child Psychology and Psychiatry, 41(4), 491-502.

These researchers compared extended families of children with ASDs with those of children with Downs Syndrome. They found that 7.5% of the relatives of individuals with ASD were classified as falling within the broad autism phenotype (people with autistic-y traits), while only 2.7% of the relatives of individuals with Downs did so. Basically, this is just more evidence for that fact that there are genetic factors involved in ASDs.

To read more on Autism and genetics in general, go here:
http://www.iancommunity.org/cs/understanding_research/insights_from_genetics

What I haven't found yet is whether anyone has calculated a specific risk for first cousins. If I do, I will post it!

First cousins, by the way, are "third degree relatives." That means they share 1/8 of a person's genes. First degree relatives (parents, siblings, children) share 1/2 a person's genes, while second degree relatives (aunts, uncles, nieces, nephews, grandparents) share 1/4.

Hi Rebsmom!

While we can't offer specific medical advice here at IAN, I can say that "it depends." In general, visits to a psychiatrist (who usually treats issues of attention, unstable mood, anxiety, etc.) or a neurologist (who often treats seizures) vary with severity of the situation and with how stable the situation has become (or not). For example, if a child is trying a new medication, and the professional who prescribed it needs to keep track of whether it is working, visits are more frequent. They are also more frequent if a child is in some state of crisis --having seizures, or rages, or is unable to function enough to attend school. Once a treatment is working, or a situation somewhat stabilizes, visits usually become less frequent.

Thank you so much, Darby. We need to get the word out to as many people as possible.

Hi worriedmom!

My best wishes to you and your daughter.

Your post brought up two really important topics. One is: how does gender impact ASDs? (Do girls with an ASD have a significantly different profile than boys?) I will be interested to see what the IAN data reveals about this topic! It's an important question, especially because parents of daughters trying to evaluate their child's diagnosis, and reading male-based criteria, may have a hard time.

Your comments on compassion, empathy, and theory of mind were very intriguing. I have noticed that at least some individuals on the spectrum are very caring, try to console others, worry about justice for others, etc., and that this caring can exist even when a sense of social reciprocity or the ability to "mind read" or take another's perspectives in a more complex way is absent. It seems we need really good definitions of all of these concepts, so we don't make the mistake of lumping them all together. After all, a child can be so compassionate he will want to comfort another child who is sad, but so socially out of it, he will not get that it is social suicide to hug another boy in the 7th grade (or that a boy on the brink of tears turning his back and stalking off wants to be left alone).

Hi Becki! I just wanted to provide a link to the info we have on special diets on the IAN Community for our readers. It's at: http://www.iancommunity.org/cs/what_do_we_know/special_diets

In the meantime, if you decide to eliminate certain substances from your child's diet, you may want to work with a professional (perhaps a nutritionist) who can guide that process. For example, parents eliminating milk may need assistance finding other ways to provide the nutrients their child used to get via milk products.

Looking at preliminary data from IAN Research, Casein and Gluten Free diets are the 10th and 11th most common interventions being used by parents participating. It will be important to see if parents using the diets continue to use them over time, and what they report about their experience.

Pamster, thank you so much!

Any of you out there who might like to distribute brochures --it's easy to get some and they are free. Click on the link here to order:

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

Thank you for your encouraging words, Pamster.

In truth, it is we at IAN who must thank every parent who sits down in front of their PC and takes the time to share their information, not to mention all the people out spreading the word about IAN so that parents will know about us. Our deepest thanks to all of YOU!

Hi Ivy. I'm so sorry to hear that you and your son have had to cope with seizures in addition to an ASD.

I am not an expert in this specific area, but I will try to answer your question. From looking at the scientific literature, it is clear we still don't know exactly why there is a connection between the Autism Spectrum Disorders and epilepsy, although there certainly is one. The percentage of children with ASDs who also have epilepsy varies widely in studies --from 5 to 38%-- partly because children of different ages and different diagnoses (only autism, mixed ASDs) are being considered. (Looking at only younger children will minimize the number because a large number of individuals only develop epilepsy after age 10 or even further into adolescence.)

In one study, the risk of epilepsy "rose with both age and presumed diffuseness of the underlying brain dysfunction as shown by the severity of the cognitive deficit and the presence of cerebral palsy or other overt motor deficits." Children with normal or near-normal intelligence and no other risk factors (like cerebral palsy) had a very low rate of occurrence of epilepsy. (See "Epilepsy in Autism" by Tuchman and Rapin in The Lancet Neurology October 2002, Vol. 1, Issue 6.)

If you would like to dig deep yourself into the medical literature, the article cited above would be a good start. (Articles have references to other articles, and you can quickly generate an entire stack on any topic to study.) Abstracts (which are quick summaries) are available to the public for free at www.pubmed.gov; to get full articles you might have to pay for them or make a trip to a medical library. Tips on how to evaluate the scientific articles you read can be found in "A Uniform Framework for Evaluating Research Studies" here: http://www.iancommunity.org/cs/understanding_research/oar_uniform_framework_for_eval_research

In truth, we do not yet have complete answers on the link between epilepsy and autism. IAN will be able to play a role in future studies by providing data not on just a few, but on thousands of children, to researchers investigating this issue, as well as many others.

In addition, just by your post here, your views and priorities will be included when we at IAN meet with researchers. We will be providing feedback and input from the Community, including these messageboards, to help make parents' voices heard.

Nessie wrote:

Oh the Dr also said that J could maintain eye contact. (which is from years of us telling him "when some talks to you try to look at them"
I guess my question/concern is: Are some children with Aspergers/Autism more social that others?
Thanks
Nessie

Hi, Nessie.

Just to answer your question about "are some chldren with Asperger's/Autism more social than others" --the answer is definitely YES. Some researchers actually divided kids with ASD into groupings of "aloof" (the leave-me-alone type), "passive" (I'll interact if you come up and make it happen type), and the "active-but-odd" (I want to talk to you, but I don't really understand reciprocity type). To read more about what the latter group may look like, go to:

http://www.iancommunity.org/cs/about_asds/aspergers_syndrome_social_and_emotional_issues

Hi jmomee99! Parents can absolutely share their experiences and meet each other on the IAN Forums, although this will tend to take place around a "research-focused" topic, like the "Mothers and Depression" topic posted in the IAN Research Findings Forum.

A "sister-Discussion Forum" to ours that is more general parent-to-parent support and advocacy focused will be opening VERY soon on the Autism Speaks site. That will be a great place to share daily happenings with other parents in the same circumstances.

Once our sister-forum at Autism Speaks is in place, we hope you will be able to have the best of both worlds by skipping back and forth between our "research-focused" forum and their "parent-to-parent support" forum.

Hi jmomee99! Just leaving a quick link for you and our readers to the info on the IAN website about Risperdal: http://www.iancommunity.org/cs/what_do_we_know/medication

Although no one can predict how an individual child will respond to a particular medication, I can say that this is the only medication FDA approved specifically to treat symptoms such as irritability, aggression, self-injury, and unstable moods in children with autism spectrum disorders.

Hi everyone. I just wanted to tie K-9's comment to the issue of research topics.

Various types of animal therapy are being used with kids "on the spectrum," including the fascinating work of service dogs. Parents participating in IAN Research report the treatments their children are on, and the current list of treatments they choose from includes generic Animal Therapy, Horse (Equine) Therapy, and Dolphin Therapy. (Parents filling in the questionnaires can add anything that's not on the list, too.) You can find the current list here:

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

What would be interesting is to see these "animal" interventions scientifically studied. What type of animal therapy used with a child with what type of ASD has what type of effect on what symptom? Many of us --and I am no exception-- feel we "know" that a therapy, whether a medication, a vitamin, Sensory Integration, or a relationship with a service animal, is working...but that is not the same as evidence. One of the purposes of IAN and the larger world of autism research is to help us move along the path from individual intuition or belief to scientific evidence.

To read more about how IAN hopes to collect our individual experience and wisdom on the path to scientific evidence, go here:

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

Hi Blue Skies!

You are so right. We are working with our software developers to resolve the problem. It's driving us to distraction, too!