IAN Research Conference 2007: Small Group Discussions
Adults with Autism
Group Leader(s): Margaret Bauman, Peter Gerhardt
Group Participants: Katherine Murray*, Bonnie Taylor*, Marianne Toedtman, Ann Wagner*, Connie Anderson (* indicates potential collaborators)
Summary:
The purpose of this group was to discuss how adults with an ASD can be included in the IAN research database. Currently, the database is limited to children under the age of 18 years. The issues specific to adults on the spectrum differ greatly from those of younger children. The group was given the task to develop a list of topics relevant to adults with ASD.
The following points were discussed:
- Currently there is a dearth of research and researchers interested in investigating issues related to older learners
- There are two groups (maybe more) of adults with ASD:
- Those who can self-report
- Those who cannot self report (NOTE: The requirements for self-reporting are probably different than those necessary for providing informed consent; perhaps this does create more than 2 groups)
- Could we identify a group of "successful" adults and do a retrospective study? (Measuring outcomes and seeing what factors help people succeed.)
Topic areas:
- History including education, social, health (including height, weight), mental health, previous diagnoses
- Current status and services: employment, college/classes/training, leisure, therapy
- Educational status (still in school?) and history
- Family-of-origin structure including family health history (and mental health)
- Sexuality
- Onset/duration challenging behaviors
- Victimization/Abuse
- Contact with Criminal Justice System
- Finances/future plans
- Quality of life/ Goodness of Fit
- Self-perception (What would you change about yourself? What would you not change about yourself?)
- Relationships: friends (in person or online?), boy or girlfriends or spouses, family, co-workers, classmates. Who do you turn to when you need help?
Action Points:
- Develop initial IAN for Adults questionnaires
- Can we have a form that permits a "completed by so-and-so with assistance of so-and-so"? (in case of someone asking their parent or someone else to help, especially with medical/diagnostic history questions)
- Solicit feedback from experts and adults with ASD before finalizing
- Concurrently, explore software development and legal issues that must be resolved prior to launching adult version of IAN
Autism and the Enviroment
Group Leader(s): Martha Herbert
Group Participants: Sophia Colamarino, Ron Oberleitner, Mark Corrales,
Andrew Autry, Rob Fitzgerald
Potential Collaborators: Craig Newschaffer (Drexel), Isaac Pessah (MIND), Ian Lipkin (Columbia), Irva Hertz-Picciotto (MIND), Ken Olden (NIEHS -- could refer), Mark Corrales (EPA), Woody McGinnis (ARI), Joan Cranmer (editor, Neurotoxicology)
Summary:
The purpose of this group was to discuss how IAN could be used to collect environmental information from parents. Structure of questions to be collected: Exposure: specific exposures, environments associated with exposure (new housing-indoor air pollution vs. old housing-lead pipes), urban vs. rural areas, proximity to highways, pesticides, powerplants, allergies, self-restricted diets, etc. Effects: does behavior/health fluctuate? What month? In relation to anything? Sensitivities (perfumes, vehicle exhaust, noise, smoking, etc), allergies, rashes, diarrhea, etc. Parent information: exposure, discerning way of asking about parental occupation.
Action Points: Ask participants in Friday's Autism and Environment (Autism Speaks) meeting to contribute ideas for questions. Construct catchall list of possible questions, then have it reviewed by advisory committee to be formed.
Pregnancy
Group Leader(s): A. Zimmerman*
Group Participants: Woody McGinnis, Mark Corrales, Li-Ching Lee*, Bernie Karmel*, Allison Marvin, Mary Ann Winter-Messiers*, Rebecca Landa, Sarah Spencer, Sophia Colamarino, Kelley Engle, Bonnie Taylor.
Potential Collaborators: starred above.
Summary:
The purpose of this group was to brainstorm about the development of a detailed pregnancy history questionnaire that could be completed by mothers participating in the IAN research database. The discussion focused on factors that may be considered in prioritizing topics as well as specific topics that could be covered in a questionnaire format. The group discussed briefly the design of a pregnancy survey.
Factors to consider when determining topics for the questionnaire:
- Under-studied vs. plausible biological model.
- Linked to autism or other neurodevelopmental disorders.
- High population attributable risks.
- High neurotoxic risks for autism (or other disorders).
Possible topics to be explored:
- Assisted fertility treatments (IVF etc).
- Diet, fish consumption, Hg, etc.
- Smoking, marijuana, ETOH, etc.
- Occupation during pregnancy, exposures, central a/c
- Pets, animals.
- Infections during pregnancy and which trimester.
- Include pre-conception and three months earlier, birth control pills or contraceptive methods?
- Medications, antibiotics, vitamins, iron, terbutaline
- Excitotoxins-aspartame, msg added to food, parmesan cheese (pizza).
- DEHP, BPA Plasticizers (?) IV tubing, plastic bottles, breast or bottle nipples.
- Dental Hygiene- fillings
- Co-morbid diagnosis-diabetes, epilepsy.
- OB-fetal movement, fetal testing-FUS, abnormal tests, weight gain, fevers, labor and delivery fetal distress, blood pressure, Rh (rhogam), surgery-anesthesia.
- Type of delivery (C-section, vaginal, induced)
- Length of gestation (premature, overdue)
Survey design: Possible drop down menus may include problems during pregnancy, stress, your concerns during pregnancy.
Treatments/Interventions
Group Leader(s): Mike Aman.
Group Participants: Tom Hoen, Susan Levy, Rebecca Landa, Michelle Zimmer, Louise Ritz, Richard Malone, Sherie Novotny, Kelley Engle, Paul Benson, Ann Wagner, Woody McGinnis, Jennifer, Tjernagel, David Black, Bonnie Taylor
Potential Collaborators: none given.
Summary/Action Points:
- Categorize behavioral change (eg internalizing, externalizing, sleep, activities of daily living, socialization, communication, etc).
- Get record of tried treatments that were stopped, and reason for stopping (eg adverse events).
- Ask families to login and document behavior before new treatments are actually started.
- Identify, track treatments that are sky-rocketing, etc. (example from the past: secretin).
- Make sure to collect dosage information (how much ABA training is needed for optimizing treatment effect?)
- Make sure participants understand terminology, using laymen's terms. Terms like "meltdown" or "stimming" may be helpful.
- Ask parents to rank order for the top 10 treatments that their child has received. Consider the use of fine-grained instruments to gauge change in some or all cases.
- Give families a list of treatments to select from (medicines, psychosocial treatments, complementary and alternative medicines, etc).
Maternal Depression
Group Leader(s): Mary Ann Winter-Messiers*
Group Participants: Li-Ching Lee*, Ron Oberleitner*, Cindy Herr*, Alison Marvin*, Kate Foster, Bonnie Taylor; (* indicates potential collaborators)
Summary:
The purpose of this group was to offer ideas on how IAN Research could further explore the topic of depression as it impacts mothers of children with ASDs. To date, 46% of mothers participating in IAN Research report either being diagnosed with or treated for depression. Although comparison data is difficult to find, this is much greater than expected. A discussion forum on the IAN community has drawn a great deal of input from mothers on the importance of this topic.
The main items of discussion were as follows:
- What types of depression are mothers experiencing? When did the depression begin? Specifically, we need to explore event-specific depression, pre-pregnancy onset, history of post-partum depression, etc.
- What about stages of grief around ASD diagnosis? Should more information be collected about this? And perhaps PTSD?
- Should the question be narrowed? Or at least followed by more specific questions? Suggestions: "Have you ever been professionally diagnosed with depression?"
- It may also be valuable to assess current mental state using a specific tool, such as Freyd Depression Scale, CES-D, and DTS (trauma scale). Some of these tools would reveal current symptomatology. Another strategy may be to ask screening questions "Over the past two weeks, have you felt down, depressed, or hopeless?" and "Over the past two weeks, have you felt little interest or pleasure in doing things?" These may be as effective as longer questionnaires.
- Consider asking about co-morbid conditions such as substance abuse and addiction.
- What about treatment for depression? Medications? How about family and friend support structure?
- Need to review current literature on maternal (and paternal) mental health in families with children with autism.
Action Points:
Consult with professionals in the field. Specifically mentioned: Dr. Tim Lacy, Dr. Jennifer Freyd, Dr. Jonathon M. Davidson (DSM-IV PTST criteria author).
Institutional Database Linkage
Group Leader(s): Janet Farmer, Vlad Kustanovich
Group Participants: David Black, Elaine Tierney, Kate Foster, Rebecca Landa, Michelle Zimmer, Richard Malone, Louise Ritz
Potential Collaborators: NDAR staff (Louise Ritz), ISAAC staff, Janet Farmer, Rebecca Landa, Michelle Zimmer.
Summary:
- Question was asked: How do we create databases for states similar to the one created in Missouri?
- Question was asked: Will there be an NIMH link between NDAR and IAN? NDAR is similar to ISAAC-has global user ids, manages all forms, huge data warehouse, ATN will used NDAR, individual researchers can set up studies
- Benefits of linkage between IAN and NDAR: saves parent having to enter information twice, advance science and research, longitudinal studies, IAN can recruit into your study. Challenges: ethics/IRB issues, personal privacy, technical, common subject # as a point of entry. Pros: shared data. Cons: privacy concerns by parents.
- GUID- maybe too many global unique IDs.
- Questions asked: Specific data forms from individual researchers? Can you obtain raw data, plan to obtain IAN data in the raw? Can researcher's longitudinal self-report data be automatic notification system for an individual project? Data transfers from IAN to another data set?
Action Points: Creating guidelines for linking IAN to other databases (logistical, technological, privacy, etc). Creating infrastructure in IAN to do this.
IAN Sampling Issues
Group Leader(s): Guillermo Montes
Group Participants: Paul Benson, Andrew Autry, Kelley Engle, Alison Marvin.
Potential Collaborators: Guillermo Montes, Alison Marvin.
Summary of Action Points:
- Connect with state systems (for example, early intervention departments).
- Complete information on referral (how did the people find out?).
- Transition to Spanish (Google buttons(?)).
- Connect with groups advocating for minority children with autism, exploring ways to make sample more representative. Survey minority parents in IAN for suggestions on how to improve recruitment. Analyze how minority parents find out about IAN.
Co-morbid Conditions
Group Leader(s): Cynthia Molloy
Group Participants: Sarah Spence*, Stewart Mostofsky*, Tom Frazier*, Susan Levy*, Bernie Karmel*; (* indicates potential collaborators)
Note: Does the term "co-morbid" have a negative connotation for parents? Should we change our language when communicating with parents to something else, such as "co-occurring condition"?
Summary:
The purpose of this group was to develop a plan to capture information about other disorders that children with ASD may have. The questionnaires currently in IAN are limited in this area. Expansion of the database to include co-morbid diagnoses will allow researchers to better understand the relationship between ASDs and other disorders.
The main points of discussion were as follows:
- There are 3 categories of co-morbid conditions that should approached differently:
- Genetic disorders---a list of disorders by name should be included.
- Medical disorders---use of review of systems format.
- Neuropsychiatric disorders---For each condition, 4 questions should be addressed:
- What are/were the symptoms?
- Was the disorder diagnosed by a professional
- Has the condition required treatment?
- Has the condition required hospitalization?
Action Points:
- Develop questions for each category
- Circulate to group for input
- Submit to IAN Team
