David Mandell, Sc.D. conducted a study, ‘The Effect of Childhood Autism on Parental Employment,’ that was presented at the International Meeting for Autism Research (IMFAR) this year. ABC Los Angeles covered Mandell’s study and can be viewed in this clip.
David Mandell, Sc.D took time for an interview with Alex Plank to discuss IMFAR 2011, his study, and other autism related topics.
For more updates from the 2011 International Meeting for Autism Research visit here
By: Alycia Halladay, Ph.D., Director of Research, Environmental Health Sciences
As the average age at which early signs and symptoms of autism and diagnosis moves becomes younger and younger, methods for intervening at autism at the earliest possible ages are becoming more widely used. At this year’s IMFAR meeting, several clinicians and researchers addressed differences in design, methods, and identified challenges and potential solutions for delivering intervention from individuals with ASD as young at 10 months of age. Since this is when very early symptoms of ASD can be detected, but not yet diagnosed, many are considering this as a method of prevention rather than intervention. A feasible and cost-efficient way to provide interventions to infants and toddlers is to engage parents and train them to use behavioral techniques to improve development. What works for adolescents and adults does not apply to infants and toddlers. Instead of spending time working on specific tasks and skillsets, clinicians work with parents and provide ongoing support to engage children in social, communication and motor skills during playtime activities. But does this prevent ASD?
The simple answer is that it is very complicated. As reported in an earlier report, one size does not fit all. There may be a number of variables that affect outcome. In addition, last year, a report out of the UK last year reported that parent-mediated interventions did not result in a change in diagnostic status in young children. This same group showed new data at IMFAR this year showing that the intervention was effective in some ways – infants showed increased attention and gestures as well as improved shared interest. These early improvements are thought to lead to a higher level of functioning later on.
Children with ASD suffer from impoverished social interaction, and parents can be instrumental in providing stimuli to their children to change behavior. Most interventions now focus on encouraging parents to actively engage the child using evidence based strategies, in natural environments. Other types of interventions that were used included promoting behaviors and responsiveness in the context of everyday routines.
Given that published research don’t actually prevent ASD, but improve long-term outcomes, is the goal of early interventions to reduce the incidence of ASD? Alice Carter, member of the Autism Speaks Toddler Treatment Network noted that earlier screening and delivery of parent interventions which improve joint attention, and coordinated attention between parent and child – may prevent symptoms down the road, but may not always lead to a change in diagnosis. She stated “working with parents can make a huge difference in many children’s lives.”
Improved outcome measures which are more sensitive to improvements over time on a number of domains need to be developed to better describe these differences. In addition, working with a young child at home is difficult in any situation, and especially for families affected by ASD. Therefore, methods and techniques to maximize the amount of time parents deliver effective interventions are considered a priority. Autism Speaks is proud to sponsor this network in thinking about these important issues.
This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian.
There is a lot of talk about the need for therapies for adults with autism. A review of emerging adolescent therapies suggests that many can be applied to adults with minimal adaption. Testing/validating of what we have will be a lot less costly than developing something new.
More and more, scientists agree that autism is the result of genetic predisposition and a trigger. Many hoped the “trigger” was a simple chemical like mercury, but we are realizing there are both environmental and disease triggers. Unfortunately, knowing they are there does not make them any easier to find. Identifying pathways into autism for a large part of our population remains an elusive goal.
One of the things that pleased me most at this year’s IMFAR conference was the way that advocates and journalists are finally coming together and finding common ground. “As Thinking Person’s Guide to Autism” editor Shannon Rosa said, science doesn’t have a hidden agenda…
This year’s Autism Speaks “Autism Connects” technology competition drew over 130 technical and engineering students to develop tools to help people with communication disabilities. For me, the most important take-away was not the entries themselves but the realization that we have so much to gain by drawing technical people from other fields, like industrial design and computer science into autism research.
For some time we have known that that therapies like ABA teach behaviors, not feelings. For example, we (autistic people) can learn to read a face and realize, “he’s happy,” but that logical knowledge does not often translate to us experiencing the feeling. At this year’s IMFAR Susan Bookheimer of UCLA spent quite a bit of time showing me what imaging studies are teaching us about how we may soon help autistic people feel that happy message and thereby feel happy themselves. That will represent a quantum leap in the power and effectiveness of therapy.
I’ve heard comments about “the rolling walk of autistic people” before. This year I saw results of a study from the University of Fairfield that actually quantified differences in gaits between autistic and NT people. Why do we walk in a sawtooth pattern where NT people walk in a straight line? The researcher had some ideas, but why remains a mystery.
For years people have looked at nonverbal people (autistic or otherwise) and wondered… what’s going inside their brains? If a person can’t talk, they can’t take a conventional IQ test, and rightly or wrongly, many have been presumed intellectually disabled for lack of evidence to the contrary. Today, researchers are using both high precision EEG and fMRI imaging to measure brain patterns in response to stimuli. For example, when a person sees a cat and hears the word cat there is one characteristic pattern of activity. When the person sees a cat and hears dog, the mismatch causes a different activation. We can measure those responses, even in people who don’t talk, and thereby gain insight into how much they are perceiving and thinking, and how fast. Understanding is the precursor to therapy.
This year many scientists who have family members on the spectrum proudly wore stakeholder ribbons on their name tags. At the stakeholder lunch, we discussed the balance between funding community services and funding science. Without science, all we have to care for the disabled is faith and compassion. The addition of science-based medicine is what’s taken us from life in the Middle Ages to where we are today. Science provides the foundation to make community and family services work better. That’s why we need it.
When I spoke at the luncheon yesterday, I reminded people that we are all sitting here in safety, but in the middle of our country, one hundred million pounds of water are flowing past Red River Landing on the Mississippi River every single second, and the rate is rising still. That flood could cause the loss of the Old River Control Structure, which is what keeps the Mississippi from changing course and flowing to the Gulf at Morgan City instead of New Orleans. If that happens as a result of this historic flood (already greater than any we’ve seen in 80 years) our country could be facing the worst natural disaster in its history.
If you’re a praying person, now is the time to pray for all those people in the Mississippi floodplain. As much as I believe in science and engineering, if I had to lay money on the Army Corp of Engineers or Nature, I’d have to choose nature.
Why Nature? In the world of autism, the brain nature has given us provides the most complex puzzle man has ever attempted to solve. Out on the river, this flood shows once again how all our science and technology sometimes fades to insignificance before the natural world. Yet we go forward with faith that science will bring us the solutions we need, both on the river and in our heads.
On a personal note, I was pleased to see grad students and researchers whose work I have supported through my participation in review boards bringing the fruits of their work to IMFAR. It made me feel like I had a small part in the collective success of our group, and that feels good.
I was also thrilled to see that Alex Plank (a young man with Asperger’s) was filming the conference and he’ll be sharing it soon on the Autism Speaks and Wrong Planet websites, and elsewhere.
In closing I’d like to thank all the friends I’ve made in this community, and also the folks at INSAR and Autism Speaks, who made it possible for me to attend this conference. I’ll see you next year in Toronto!
By Leanne Chukoskie, Autism Speaks
In 2008, Autism Speaks kick-started research in the area of non-verbal autism through its High-Risk High-Impact initiative. This year at IMFAR, Autism Speaks-funded research was featured in the Invited Educational Symposium titled Characterizing Cognition in Non-verbal Individuals with Autism: Innovation, Assessment and Treatment.
Geraldine Dawson, Ph.D., Autism Speaks’ Chief Science Officer, chaired the session and set the stage for the audience to appreciate the importance of this particular topic. An estimated 30% of individuals living with autism are functionally non-verbal, yet very little research effort was directed toward helping this group communicate their wants and needs. The inability to communicate leads caregivers and clinicians to the presumption that the cognitive skills in these individuals were low because the tests typically used to assess cognitive skill require verbal or behavioral responses that this group of individuals does not readily produce.
The first speaker was April Benasich, Ph.D. of Rutgers University, who received an Autism Speaks grant for her research. Dr. Benasich presented data on innovative new studies on 3-7 year old non-verbal children with autism. Using tasks that were designed to assess children’s capacity to identify mismatches between sights and sounds. For example, a picture of a frog might be presented with the spoken word “frog” or “cow.” The latter, obviously incorrect, pairing generates a spark of electrical activity in the brain called a mismatch negativity about 400 ms after the stimulus was presented. This sort of task can also be used to probe contextual understanding in non-verbal children by pairing, for example, the frog with “green” or “pink.” Even greater complexity can be tested by presenting sentences with errors in syntax. When heard by children who understand language, these syntax errors generate the same kind of brain potential.
Dr. Benasich and her colleagues developed a training protocol to get the children comfortable with the application and wearing of the EEG net as well as exposing them to all of the concepts presented in the experiment. The results revealed some similarities and some differences in the processing of sensory stimuli in the non-verbal children and this is not unexpected as they continue analyzing these data and also new data on older non-verbal children.
However the real power of using EEG techniques for assessing cognitive capacity is that it can tell us for an individual what we cannot get from standardized cognitive tests. Dr. Benasich presented results from individuals, some of whom were picking up the mismatches in the pictures and sounds, or sentence errors and some of whom did not.
This was the launching point for the next presentation from John Connolly, Ph.D., of Mc Master University. Dr. Connolly typically studies individuals who suffered traumatic brain injury and must be assessed to appropriately design rehabilitative therapy. He and his colleagues adapted a standard test for word comprehension called the Peabody Picture Vocabulary test (PPVT) into a tool that can be used by measuring brainwaves – no oral or manual response required. A grant from Autism Speaks allowed him to adapt his methods to work with non-verbal individuals with autism. By learning exactly what these non-responsive adolescents can and cannot understand, one can more appropriately design therapies to help them move to the next stage of learning.
Nicole Gage, Ph.D. of UC Irvine relayed her studies of both speech and sound processing in minimally-verbal children with autism using a different brain measurement tool called magnetoencephalography or MEG. One advantage of MEG for children is that nothing actually touches the child during the measurement. Although they must lie very still, there is no noise and the device resembles a fancy salon hair dryer. Using this technology, Dr. Gage and her colleagues are finding differences in very early in brain processing responses to tones and mature early in human development. These responses occur at the level of the auditory brainstem and may be at least partially responsible for the atypically responses measured to both tone and speech sounds observed by both Dr. Gage and other researchers at the later stages of brain processing in auditory cortex.
Lastly, but perhaps most importantly, Connie Kasari, Ph.D., of UCLA and the organizer of this special session presented her Autism Speaks-funded treatment research specially tailored for non-verbal children between the ages of 5 and 10 years old. Dr. Kasari uses structured play-based methods to build a scaffold and provide context for encouraging communication in these children. Her randomized controlled trial design encompasses treatment sites at UCLA, Vanderbilt, and Kennedy Krieger and involves the play based therapy especially designed for these children and also a treatment arm that includes an alternative and augmentative communication device. Dr. Kasari showed data from the group thus far – after three months of the six-month treatment trial. Not only are some individual children making incredible strides toward initiating functional communication, but overall 75% of the children in the study are responding to the therapy. Interestingly, looking back at the detailed assessments taken on the participating children upon their entry into the study no particular features distinguished the responders from the non-responders thus far.
These studies break new ground in reaching those with autism who cannot speak. However, the next steps will almost certainly be the most exciting. As more researchers and clinicians learn about these studies and are able to take advantage of the results presented, we will be better able to understand and assist individuals who are now non-verbal. These sentiments were perhaps captured best in the enthusiastic response the speakers received from the loved ones of those affected.
Geraldine Dawson, Ph.D. became Autism Speaks’ first chief science officer in January of 2008. In this role, Dr. Dawson serves as the scientific leader of Autism Speaks, working with the scientific community, stakeholders, and science staff, to shape, expand, and communicate the foundation’s scientific vision and strategy. Dr. Dawson presented the Autism Speaks strategic plan on the second day of IMFAR. She also took the time to be interviewed by Wrong Planet’s Alex Plank.
This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian.
Yesterday I listened to a very interesting talk from Catherine Lord, Ph.D., one of the creators of the ADOS test. ADOS is the “gold standard” in the world of autism diagnosis, and she’s a leading figure in the world of autism testing and evaluation, so I jumped at the chance to hear her thoughts on where we’re headed in that regard.
People who receive an autism diagnosis are told they have one of three conditions: Autism, Asperger’s, or PDD-NOS. The big question is: who should be diagnosed with what? Is there a coherent sense of classification, or is it merely arbitrary or random? She reviewed the diagnostic data for several thousand spectrumites in an effort to determine what caused a person to end up in one of those three categories.
To her surprise, after analyzing the data, she found the principal predictive factor had nothing to do with the individual. Looking at records from a number of good university hospitals, she found places who called almost everyone Asperger, and other places where everyone was PDD-NOS. There was no discernible pattern of variation between individuals; they seemed to simply get different diagnoses in different places.
Was there more to the story?
To answer that, she looked at other factors, like IQ. For example, many people call Asperger’s “autism lite” or “high IQ autism.” Her review of Asperger diagnoses at one Ivy League school bore that out, with their Asperger kids having average IQ of 123. However, other doctors must see Asperger’s differently, because a Midwest clinic in the study has an average Asperger IQ of 85.
She looked at quality of language in older kids and found similar ambiguity. In the final analysis she did not find any consistent measures of the individuals themselves that led to one label or the other being applied.
In my opinion, those findings support the argument that there is no consistent standard that sets the three descriptive terms for autisms apart. A difference at one point becomes invisible at another. For example, you could say four-year-old Mike does not talk so he’s autistic and Jimmy talks up a storm so he’s Aspergers. But what happens when both kids are 10 and they look and sound the same? Were the differences justified? What purpose might they serve by their difference?
Her findings made one more strong argument for combining all autism diagnoses under the heading of autism spectrum disorder, with a described range of disability or affect.
That’s the way things seem to be headed for the next DSM.
At the same time, Dr. Lord expressed concern that many people have a strong personal investment in one diagnostic name or the other, and they should be able to keep using the different terms.
Stay tuned for more tomorrow from IMFAR 2011.
The 10th Annual The International Meeting for Autism Research (IMFAR) will host nearly 2000 researchers, delegates, autism specialists, and students in the world’s largest gathering of researchers and clinicians devoted to a better understanding of autism.
At the official press conference, scientists discussed key studies to be presented during IMFAR. David Amaral, Ph.D., the President of the International Society for Autism Research, led with opening remarks. Speakers included Eric Courchesne, Ph.D., Antonio Hardan, M.D., David Mandell, Sc.D. and Irva Hertz-Picciotto, Ph.D. Dana Marnane, Vice President of Awareness and Events at Autism Speaks, moderated the conference.
This video was shot by Alex Plank and the Wrong Planet crew.
• Geraldine Dawson, Ph.D. became Autism Speaks’ first chief science officer in January of 2008. In this role, Dr. Dawson serves as the scientific leader of Autism Speaks, working with the scientific community, stakeholders, and science staff, to shape, expand, and communicate the foundation’s scientific vision and strategy. Dr. Dawson presented the Autism Speaks strategic plan on the second day of IMFAR. She also took the time to be interviewed by Wrong Planet’s Alex Plank.
• Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian, is reporting from IMFAR. You read can his blogs here, here, and here.
• 2011 saw a new approach for Autism Speaks’ Innovative Technology for Autism (ITA) initiative with the running of a student design competition called Autism Connects. The design brief was pretty straight forward: to create technology design ideas for individuals with autism to better connect with the world around them, and to allow individuals who do not have autism to better understand and connect with those who do. You can find out more about this program here.
• David Mandell, Sc.D. conducted a study, ‘The Effect of Childhood Autism on Parental Employment,’ which was covered by ABC Los Angeles, in the clip below.
• New research is coming out of the International Meeting for Autism Research, includes ‘Adults with autism face health problems with age.’ For the full article, visit here. The clip below is from ABC Los Angeles.
• The Fly: into Autism crew was in attendance and performed some of their hit songs. FLY reflects and honors the diversity of its inspiring voices with an eclectic blend of rap, punk rock, ballads, soul, even Broadway. It boldly opens ears, eyes and hearts to the miracles of autism.
Video Credit: John Robison
• Alex Plank caught up with Clara Lajonchere, Ph.D, the Vice President of Clinical Programs for Autism Speaks.