Stanford University's Autism Research Program's 7th Annual Autism Spectrum Disorders Update was held on the 19th of April earlier this year.
Even though I have been keeping up with the general science online, this was the first science-based autism conference/meeting I’ve been to in all the 8+ years of our autism journey. So I would like to write about what was shared at the meeting, even though it was a few months ago.
A show of hands showed about 80% of attendees was parents. The man sitting next to me opened a hesitant conversation. He was in his late 20’s. He said he was representing his sister.
I have a 3 three year old nephew. He has autism.
My sister can’t come because she has to take care of him after he comes back from special-preschool. Things have to be done in a specific way at home and only she seems to get it right.
He became serious.
I’m making sure I listen carefully so I can report back to her.
The first talk was by Elizabeth Langeson, PsyD, from UCLA Semel Institute for Neuroscience and Human Behavior. She presented about “Fostering Social Connections for Young People with Autism Spectrum Disorder: The PEERS Social Skills Program”
Peer rejected (by teasing and bullying) and socially neglected (isolated and withdrawn) individuals with ASD were in a small group study. There were given didactic lessons, role-play demonstrations, exercises and homework, along with caregiver coaching.
Some of the role-play conversational training skills were shown by video. For example, a young person with autism was shown trying to enter a group conversation. An analysis of how it went, what went right and what went wrong was given.
The clinic tracked the results of responsiveness. It did a follow up at 14 weeks and a long term follow up at 1-5 years. The group size was 82 and had high functioning, verbal young adults as participants. Social skills improved. Problem behaviors were found to decrease. The clinic is continuing such studies with preschoolers and high-functioning adolescents, using a Virtual Coach and similar programs.
(Something that struck me- Earlier in the same month the CDC released new Autism Rates data. Some experts commented in news reports that rising rates were from very high-functioning individuals, whose parents are seeking a diagnosis only because of increased awareness in order to get more resources. However, these videos showed individuals seemingly within the same sub-bracket of autism having clinical level difficulty in functioning at a basic level in society)
“Is Brain Circuitry in People with Autism Spectrum Disorder Connected Differently?” was the title of the talk by Lucina Uddin, PhD, from the University of Miami.
(I became restless -this subject is difficult for me.
Very soon she said- We are starting to learn new things every year how the brain works. I felt much relief and gratitude over this)
Prof. Uddin spoke about how there isn’t just one area of connectivity in the brain. From my notes: There are different kinds of connectivity. There is functional connectivity, effective connectivity and structural connectivity. Which can be looked at by fMRI and DTI techniques. In general, adults show greater functional and structural connectivity.
In autism, studies show both under and over connectivity. In high-functioning population, there is over-connectivity as children but can normalize as adults. There can be mixed patterns within areas even as children and under-connectivity as adults. The picture isn’t clear.
An interesting concept of “salience network” was presented. It is a brain diagnostic measure of different centers in the brain which can predict with 70% accuracy the symptom severity and also, I believe as to who will respond to treatment. In general, autism was described as a ‘Neurodevelopmental disorder of brain connectivity’ which impacts social, language and sensorimotor functions.
Just as I was getting up for the breakout session, I paused to answer a question by a woman sitting ahead of me at the table we shared. She was curious about Oxytocin. I happened to know a little. But one question led to another.
She has a daughter, 12, autism. There are issues with school.
They don’t tell me everything. They don’t like me to come to school. They are always hiding something. They are so hostile. She gave details.
She asked, How about your child?
Her eyes cautiously widened when I told her I homeschool. I often get that reaction. So many parents wish to homeschool their child with autism because they are dissatisfied with schools.
She got it. She got it right away! He is a different boy when he types, right? A TOTALLY DIFFERENT BOY?
My daughter is like that when she paints. It is like a… she held her breath and her face intensified... it like a... Picasso, she said, opening her arms out wide and holding them out for a while, her head tilted slightly backwards.
She likes to draw all the time so the school staff told us to not let her draw so can learn to do other things.
Oh no, I protested, despite myself. If she is good at that, that is her strength. Don’t take it away. Maybe you can find a way for her learn other things through her art. Her eyes froze on me for a while.
She continued. By 8 AM I am like arghhhhhh I can’t wait for her to leave.
Since she was born, I’ve taken care of her. 24/7. I am a cook. I put my love in my cooking. I taught her to cook. Now she bakes all day. She won’t stop.
It is like a knot. Everything is there, but there is this knot. Her face pained. She pinched her tummy and modeled a knot. If you pull this way or that, it will only tighten. That’s why I am not sure of medicines. They only shift and pull in some other way. I prefer to give whatever I can through my cooking. I am a good cook.
I said- Yes, true, we have to be very careful what we give our kids.
You are very lucky you have other children to play with your daughter
She smiled. She is happiest when she is with them. She draws out for them.
There were two breakout sessions- One was about Oxytocin and Vasopressin as Therapeutics and the other was Brain Imaging.
I was late to the break session on Brain Imaging. It had already started.
Prof. Antonio Hardan, MD, from Stanford University was at the end of his presentation and the discussion had already started. Many in the audience were interested in his previous work, in which NAC (N- Acetyl Cysteine) was used as a therapeutic as a glutamatergic modulator and antioxidant in a randomized controlled pilot trial. I believe his talk was about his newer work but the audience was interested in the previous NAC work.
(It is known that glutathione is low in bodies of people with autism. NAC is a precursor to glutathione and is stable)
One lady in the audience said how her son stopped perseverating on closing and opening doors after the treatment. The treatment involves taking NAC in a sequence of dosages to a target value. The professor mentioned that the results showed higher benefit to people hit harder with autism.
(I didn’t get to ask my question if he saw children who can’t tolerate NAC, like my son.)
Dr. Uddin talked about Brain Imaging. She discussed more details of her talk and of the Salience Network. She also talked of some studies done where children with autism demonstrated higher scores in mathematics compared to normal children. She also mentioned a couple of anomalies, I remember being very struck by them during the talk, though I forgot the exact details.
There was mention of the methodical process of scientific research and progress. Both Dr. Uddin and Prof. Hardin mentioned (informally) about completing analyses from collected data, the resources and funding for research.
The lobby had many informative posters and booklets from various research groups. Graduate students were at the stations answering questions and taking down the names of those who volunteered their children for various studies. One or two vendors had stalls. Autism Speaks had a stall.
I picked my lunch of a mozzarella cheese + tomato sandwich and a salad and found a sunny spot in the big backyard full of chatting people. A lady wandered close to me, plate in hand. She sat down close to me.
She looked pensive. She wanted to talk.
I am a teacher, she said. I am a special education teacher. I asked her which school district. She told me. I have a class of children in the middle of the spectrum in age group 8-12.
(She wasn’t in our home school district)
She talked slowly. She had a lot to say. What do they expect? Why can’t they see?
She was very frustrated with parents. (I trembled a little, not quite sure if she was mistaking me for a professional attendee).
These children, they are not going to… she paused, in exasperation. But the parents… are never satisfied. They want the child to do this and that. We talk, when we teachers talk, we… she exhaled in disdain.
Then she became anguished. I am so stressed all the time. I can’t relax. I can’t sleep. I am tense all the time. My husband says, why do you want to work like this? Quit. She paused.
Now, you tell me. Maybe you can tell me. What are the parents thinking? What do they want?
I was silent for a while.
I will guess.
Parents see a potential in their children with autism. They want to tap into it. They have hope. They need help. They are shown the school.
Where ever they go, the parents are shown the school. So they ask. It is in their interest to ask if you are doing enough and it is in the self-interest of a school-system to push back. A teacher and the parent are at the interface of this stress.
The real problem is autism is not fully understood. In the same school system some children thrive and some don’t.
She went inside her thoughts.
(Later it occurred to me that the stress as I called it is pervasive. It stems from the fact that the help a child with autism receives from school is negotiable and varies with the ability and means of a parent to advocate)
Post lunch, the first talk was about “Eye Gaze and Eye Contact, and if ASD children are Different” by Michael Frank, PhD, Stanford University.
I didn’t take many notes in the afternoon, I was relying on getting a handout but somehow that didn’t happen. So I’m writing from memory.
There were some very interesting experiments with a camera mounted at eye level of babies. We saw how their visual perspective changes as they grow- from a crawling stage to a walking stage. Then there were videos of children- where, when the aide working with the child used a small hand gesture to help track the child’s eye gaze to an activity, the success rate of answers increased.
(It was very interesting because visual tracking is an issue for many in the spectrum. I realized that I instinctively use home-made techniques to help my son’s visual field during activities, or else he will naturally focus on a smaller field)
“Challenges and Successes of a Student on the Autism Spectrum at a Four Year University” was a talk by Paul Griffin, B.A. His talk brought tears to many and a standing ovation from the audience.
Paul Griffin was a self-contained special day class in school and took all college prep classes. He got A’s and B’s in High School. Took extracurricular activities, like a horse riding competition. Applied to University of California in Santa Barbara. A lot of people discouraged him, saying, no you won’t be able to do this. He had assistance with the application and had accommodations for ACT and SAT II subject tests. He was accepted in 2007. The Koegel Autism Center set up services such as one-on-one aide, peer mentors and study buddies. The disabled students program helped set up accommodations such as a note taker and with test taking.
He graduated in 2012 with a major in Sociology. Through his college he kept up skills (being on time, cooking and a good work ethic), dealt with loneliness, anxiety and grades. He learned self-management and lived on-campus from the 3rd to 5th years.
He now lives with a friend in a shared townhouse and works in marketing at a small mortgage company near his home town. He said there is a need for more support at colleges for people with ASD and it is critical to have an environment where there is plenty of support and it makes all the difference.
The people with questions from the audience lined up and the line did not end. One question was
Are you ever heart-broken?
Answer: People say that people with autism have no empathy. People with autism feel things much more.
A question was for his mother. She said I knew he was bright. I never let anyone tell me he was not capable
The next Break Out Sessions were Genetics in Autism and Resources for College Students with ASD. I chose to go to the Genetics session.
It was by Joachim Hallmayer, MD, David Hong, MD and Ruth O’Hara, PhD, all from Stanford University. I missed the part of talk of Prof. Hallmayer probably because of talking to a student with a poster. The session room was full. Prof. Hong spoke next and there was a handout.
From Autism Twin Studies about 35-40% of autism was found to be of genetic cause and 60-65% of environmental cause. Cause of autism is largely unknown, with likely several different partial causes and combinations and is associated with many other genetic syndromes. He talked about a model that defines the risk for siblings. And about the tests now available for detecting variations in DNA. Tests are able to find a genetic “cause” in ~ 10-15% of cases with ASDs with associated intellectual disability. This is less likely if otherwise healthy with no family history.
Prof. O’Hara spoke about the environmental factors and studies. Again, heritability was about 37% and environmental reasons at about 68%. Pregnancy factors, delivery factors, baby with adverse conditions were mentioned. For example, age, eclampsia, hypoxia etc., have been found to have an effect. However she had a note of caution with studies which are ‘retrospective studies’ but get a lot of attention in the media.
Environmental toxins such as chlorinated toxins, proximity to traffic, plastics, pesticides and heavy metals were mentioned. Bioinformatics may be useful in determining if an association is real.
(I asked a question about Angelman Syndrome and Autism. Prof. Hong replied that they are related sub-systems of genetic pathways (or I understood it like that). The context changed so I didn’t get to ask- But, why does it fluctuate? Why does it disappear and appear? (the tendency to be unable to stop laughing))
That was the last of the day long session. I walked out to meet my son and husband who came to pick me up. We walked around in the tall eucalyptus trees waving their long arms near University Drive for a while and then went home.
Anomalies. Walking out into the lobby and at home I found myself thinking about anomalies in autism. My tired brain wouldn’t stop. Do the anomalies hold the key to an underlying pattern or are they just noise?
Why otherwise unremarkable autism symptoms fluctuate in some? Like the laughing. Another is when there is a fever. Autism symptoms significantly decrease in some when there is even a mild fever.
Mid-session, a parent from the board of Stanford’s Autism Research Center gave a short speech. He spoke about his son, of age 12. He spoke how challenging and rewarding it is to love and live with a person who sees the world very differently that you do. He said that the Center needs funds. This day-long conference was not fully covered solely by the registration fees and depends on donations.
If you would like to donate, here is the link
|Stipa Pulchra in the native plant garden of the building|