Saturday, the last day of IMFAR, I joined a 7 am meeting of a new Special Interest Group (SIG): Female Profile in ASD. It was chaired by Alexandra Head, of Deakin University, Australia, and Dr. William Mandy, University College, London. About 70 other people joined too, which surprised and delighted Alex. Currently females make up about 20-25% of children diagnosed with ASD. Most research is based on males and there is little known about females so the SIG aims to address the knowledge gap. We met in small groups to brainstorm on differences between males and females with ASD and then shared our ideas with the whole group. Dr. Shana Nichols from the Aspire center in Long Island, New York, was in my group, as was a pediatrician from Israel, a psychologist from Ohio, and a researcher from London.
Why are there fewer girls identified? Is it because they are not identified until they are older – perhaps once girls enter middle school and social challenges are more obvious? Are girls on the spectrum “lower functioning”? Girls with ASD seem to be able to make eye contact and have some joint attention, and are more able to play imaginatively and mimic, so do many girls “pass” ? Girls seem to be “moody” so are they being diagnosed with depression and anxiety instead of ASD? Are girls better able to compensate? Do they have greater capacity to learn skills that do not come naturally?
Only a few articles and books cover girls. What Autistic Girls Are Made Of By Emily Bazelon was in the New York Times in 2007. The International Center for Autism Research and Education published Differences in Autism Symptoms for Boys and Girls By Annie on April 6, 2012. And Shana Nicholes wrote Girls Growing Up on the Autism Spectrum There is a Facebook page too.
We talked about the screeners and how they are not sensitive enough to pick up girls. When a parent or day care is asked if a girl plays with dolls, the screeners don’t uncover that the play is repetitive and restrictive (the same tea party over and over).
The attendees agreed they wanted to continue the SIG and be part of an ongoing community to share ideas and recommendations for research.
I lost the keynote speaker on his discussion on brain development after 30 seconds but stayed for 30 minutes then left to go pack up and check out.
Then I attended a session on anxiety and ASD. Is anxiety comorbid with ASD or is it a core symptom of ASD or is it unique syndrome? Anxiety is classified into three areas: general anxiety disorder (GAD), separation anxiety, and social phobia. Anxiety results in poor academic performance, and poor social life. There seems to be more anxiety issues in people with ASD than among TD, but research results are inconsistent.
Drugs of course have been used off label for years. Risperidone and SSRIs have been the most popular to address anxiety, repetitive behavior, and aggression. Tests have been conducted with fluvoxamine, sertraline, and citalopram. No silver bullet has been identified. But I did get a good recommendation for a specialist at NY Presbyterian in White Plains, where I live.
Cognitive behavioral therapy (CBT) seems to be an effective treatment. When a person has a fear or is anxious about a specific situation, the memory can be long lasting, so a “reset button” needs to be pushed. This can be done by creating a competing memory. There needs to be lots of rehearsals of a new experience with positive language and even humor to replace a bad experience. The good news is that the more anxiety decreases, the more autism symptoms decrease.
I sat next to Janice Nathan, a speech therapist from Pittsburgh, who uses an approach called “how to be the boss of your brain”. She teaches kids to develop “inner speech” or an inner dialogue to promote independent planning, pausing, reflecting, and moving on.
Unfortunately I had to miss the presentation by Dr. Cathy Lord, the new head of the yet to be opened Center for Autism and the Developing Brain at New York Presbyterian Hospital in White Plains. However, I did take a cab with her to the hotel on Wednesday and she offered to share her presentation with me when I came over to her center.
I had another nice cab ride to the airport with a psychiatrist from Sweden and learned how the Swedish medical system provides full coverage to everyone with annual visits for birth to 18 so autism is “caught” early.
Once at the airport I stood in line for customs with a psychiatrist originally from Italy who now works at NYU Child Study Center and I had an enlightening conversation with her as well.
One of the things I did not care for about IMFAR was the mealtimes. For breakfast they had coffee and muffins, no fruit or yogurt, and the coffee was carted away quickly. For lunch they gave a $50 Visa debit card so everyone could leave the conference area to find their own food. This approach really does not support networking and cross-discipline sharing. And it meant that people were not using lunch time to visit the posters. (My conference lunch experiences were better even if the food was not. Attendees pick up box lunches and sit at tables with others is a good way to meet new people and the best is when the lunch is in or near the exhibit hall.) But since I did not come with a group, I wandered off alone to find a sandwich in the mall and study the program book. I was not invited to any dinner events so I ate overpriced overcooked dinner at the hotel and worked on my blog. On the last evening I did join the writers from The Thinking Person’s Guide to Autism (Shannon, Jenny, Corina, Carol) and enjoyed cocktail time with them and a few other IMFAR attendees. I had a chance to shake hands with author John Elder Robison, who wrote Look Me In the Eye and Be Different. We have been “friends” on Facebook.
I now have a handful of business cards to follow up with and new Twitter followers, and hope to continue my involvement with the female SIG. I also have several ideas I want to explore for my daughter and wish I could clone myself so I could devote the time needed to investigate and implement the treatments.
Attending IMFAR was a wonderful experience and I am very grateful to Autism Science Foundation for providing the grant.