Autism Research and Policy

Today, our community, Science on Google+, is co-hosting an event with Autism Brainstorm. The Hangout includes autism experts who will speak about educational, policy and biological research into autism.  

Read my notes of the discussion below, plus links on the research discussed, as well as biographies of our guests. I focus on the research and policy developments highlighted by the speakers. I hope these notes might also facilitate our visually impaired community members.

In order to set the background for my Hangout notes, I begin by summarising the key research and policy recommendations on autism made by The Interagency Autism Coordinating Committee. The scientific focus on biology, social science and research practices are of interest to our multidisciplinary community.

Research and policy

The Interagency Autism Coordinating Committee has delivered an updated Strategic Plan for the USA Government. This report was referenced during the Hangout. Among other issues, the key research informing this plan identifies:

International data are showing an increase in diagnoses pertaining to the autism spectrum. Studies have shown a rise in diagnosis amongst minority youth and adults from lower socio-economic backgrounds (especially those living alone). Researchers suggest there may still be more people who do not have access to services to receive adequate diagnosis and support.

Brain imaging, neuro-physiology, molecular and phenotyping, and immunity research into autism has improved, providing new insights on the neural connectivity affecting autism. Biological research has also made progress in examining other conditions and disorders that co-exist and affect autism experiences such as epilepsy.

Gaps in biomedical research include genomic, immunity and gender differences. These areas raise bio-ethical issues that researchers must be trained in. This requires that the research community develop comprehensive research and policy guidelines.

Problems remain. While more studies have emerged in the past couple of years studying genetic and environmental factors, prioritisation of diagnosis is an issue, given there are windows of time in which diagnosis is most crucial. Research on these areas is paramount. For example, the preconception and prenatal periods
Community intervention is also time-sensitive with respect to early behaviour. Research finds that young children who receive more hours of intervention (therapies, specialised education) generally have better outcomes. Enhanced research on biomarkers would also greatly improve the medical treatments available.

Sociological issues require research-based policy intervention. This includes access and payment of affordable healthcare. International research shows that disadvantageous and minority children experience barriers in getting treatment. For example, Latin children in the USA can wait up to 1.5 times longer in getting an autism diagnosis in comparison to White children. Rural children in Canada experience a delay of up to 6 months. This means that While middle-class children living in urban areas have a better chance of accessing diagnosis and treatment, while other disadvantaged groups suffer.

A broader institutional problem remains in helping families and communities support people with autism. Children with autism are more likely to wander  off alone in public and become exposed to danger. People experiencing autism also have a higher mortality rate but this is connected to co-occurring conditions like epilepsy. 

Schools are also inadequately managing autism. One study by the U.S.A. Department of Education’s Office for Civil Rights finds that 70% of cases where a child has been restrained at school involved autistic children. 

Young adult and adult interventions is a growing area that requires further research and funding. Community-based care would better help families managing these sociological and health factors

Summary of our Google+ Hangout

The Miller Method

Stephen Shore discussed how researchers are using the Miller Method, which is a set of standardised and non-standard measures to dynamically assess autism. This method focuses on cognitive development and individual needs (language, body development, socialisation and so on).

The Diagnostic and Statistical Manual of Mental Disorders (the DSM5) is the key tool used by psychiatric and mental health professionals. It has recently changed the way it categorises autism. It is now inclusive of broader conditions. It previously had a focus on closed system of autism. This is how most people think of autism, which is children who have trouble interacting with other people and who are more fixed on routines involving things. Other autism experiences exist that are not necessarily about emotional withdrawal.

The Miller Method has been working to address a variety of autism experiences. For example, system forming disorder is when autistic people have a lot of energy but they have trouble engaging with activities for a long period of time.

Organising “meltdowns”: People associate “tantrums” with autism. The Miller Method introduces ways for managing these events. The researchers note that nobody wants to suffer an emotional breakdown, but for some people within the autism spectrum, emotional outbursts are part of their disorder.

The Miller Method advocates working with these emotional outbursts. For example if a child kicks or screams as part of their emotional breakdown, therapists can work with these features to help bring structure into the child’s emotional responses. 

Stephen notes that the “greatest gap existing in research” regards adults. Shore asks: “What are we going to do to support these individuals?” The Miller Method might be adapted for adult therapies, but more research is needed to learn more about how to successfully translate this for adults.

Research Developments

John Elder Robison spoke about extending the Interagency Autism Coordinating Committee’s Strategic Plan. It addresses the following community questions about autism: 

“When should I be concerned?” John notes that 90% of children with autism can be assessed through repeated screenings every six months but this isn’t happening in practice for a range of economic and social reasons (as discussed further on). Genetic mutations can be matched to almost one-third of people on the autism spectrum disorder. Screening and diagnostic tools still need improvement.

“How can I understand what’s happening?” Research on immunity has improved over the past five years, especially in regards to brain development. Risk factors during pregnancy have been identified. Knowledge on gender differences have advanced. Boys have typically been diagnosed more frequently than girls, but John notes this is because of socialisation factors. In some cultures, boys are expected to run around while girls are expected to be quieter, so when children don’t conform to these cultural norms, parents get worried. Nevertheless, John discussed that genetics research now suggests that girls may be more protected from autism, but further research is needed.

During our on-air comments, one of our community moderators +Rajini Rao wrote: “While there is some diagnosis bias towards males because symptoms may present differently, that is not the only explanation for the gender difference in autism. As Dr. Robison just explained, there is some evidence for a ‘female protective effect’ that means a higher threshold of burden needs to be crossed in females, compared to males. I hope to delve into this more in future posts!” Looking forward to this!

What caused this to happen and can it be prevented? Sequencing studies and other research finds that copy number variance affects autism. John says: “By understanding the genetic…differences we are able to see what might be different or missing from early brain development.” Some people may question the benefits of genetic research for older children and adults, but John argues that genetic approaches help to offset existing treatments, through drug therapy or other interventions. Another important area for genetic research relates to pre-term birth. It’s known this time is a high risk factor in developing autism, but we don’t know if this is a cause or symptom. 

What to do about it? Which treatments or interventions will work? Progress has been made in building infrastructure to carry out testing and interventions. Science shows many promising interventions, but the next step is to test through trials. This will help to determine which treatments are useful for which populations.

Where can I turn for services? This area has made improvements with regards to community-based practice (treatments based on recognised science), but better services are still needed. The economic costs are significant on families (see discussion on policy above). 

What does the future hold, especially for adults? John notes that, potentially, the largest group with autism are adults. The biggest area for research is improving quality of life, but there is a huge gap in our current knowledge. For example, we still don’t know whether people with autism are more susceptible to diseases.

What other infrastructure and surveillance need must be met? This is the biggest area of challenge for research and policy. “Neuro-diverse students” (inclusive of people along the autism disorder) are being encouraged to re-mediate disability through social inclusion. This includes going on to university and conducting research on autism, as well as entering fields like education, law and other key institutions. 

Biomarkers

Alisa G Woods spoke about biomarkers in autism, which encompasses a range of biological measurements. This includes physical, genetic, neuro-imaging, and protein expression (for example in the immune system). An increase, decrease or changes in genetics can all potentially impact on autism.

There is currently over 1,500 articles on autism but the vast proportion is in genetics and little is being done in proteomic techniques. These can measure tissues, cell structure, and body fluids like saliva and blood, which is where Alisa’s research is currently focused.

Body fluids can reflect brain functions (though not always). These techniques can help with carrying out diagnostic tests more  easily, such as by taking saliva samples or doing a blood test. Alisa is working on a pilot study examining proteins via saliva biomarkers. She is also developing other methodologies that seek to better develop measurement of biomarkers. Alisa sees that this might facilitate treatment by improving screening, specifically by finding biomarkers. 

Learn More

Links on topics being discussed:

1) Lead by Dr Stephen Shore: Research in Comparative Approaches to Autism Education with special emphasis on the Miller Method®. Dr. Shore will be joined by Ethan Miller and Amir Naimov for discussion and Q&A.

2) Lead by John Elder Robison:  Current research topic(s) being considered by IACC (The Interagency Autism Coordinating Committee), a Federal advisory committee charged with coordinating all activities concerning autism spectrum disorder within the U.S. We’ll discuss the IACC’s Strategic Plan for Autism Research.

3) Lead by Dr Alisa Woods: Protein Biomarkers and Autism Spectrum Disorders, on treating clients and Proteomics and Cholesterol in Autism.

Join the Autism Brainstorm Community on Google+: They’re doing something very special with their Hangouts, by inviting scientists to discuss their research. This helps to better inform families and individuals living with autism, as well as improving autism science outreach the public. http://goo.gl/7oQ3hY

Biographies

Dr. Stephen Shore: Diagnosed with “Atypical Development and strong autistic tendencies” and “too sick” for outpatient treatment Dr. Shore was recommended for institutionalization. Nonverbal until four, and with much support from his parents, teachers, wife, and others, Stephen is now a professor at Adelphi University where his research focuses on matching best practice to the needs of people with autism.

In addition to working with children and talking about life on the autism spectrum, Stephen presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger’s Syndrome, Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, the critically acclaimed Understanding Autism for Dummies., and the newly released DVD Living along the Autism Spectrum: What it means to have Autism or Asperger’s Syndrome.

President emeritus of the Asperger’s Association of New England and former board member of the Autism Society, Dr. Shore serves in the Asperger’s Syndrome and High Functioning Autism Association, United States Autism and Asperger Association, and other autism related organizations. 

Dr. Shore is on the advisory board of AUTISM BRAINSTORM and is the primary autism education advisor. He frequently participates in Google Hangout events hosted by AUTISM BRAINSTORM.

education.adelphi.edu/profile/steven-shore

www.autismasperger.net 

John Elder Robison: Self Advocate, Parent and Author, Mr. John Elder Robison joined the IACC as a public member in 2012. Mr. Robison is an Aspergian who grew up in the 1960s before the Asperger diagnosis came into common use. At age sixteen, Mr. Robison left high school to join his first band as a sound engineer. Within a few years he was building equipment for Pink Floyd’s sound company, touring the hockey rinks of Canada with April Wine, and creating the signature special effects guitars for the rock band, KISS. John went on to design sound effects and other circuits for some of the most popular electronic games and toys of the era before moving into more conventional engineering management. In the late 1980s, John left electronics for a new career – cars. His company, J E Robison Service, grew to be one of the largest independent restoration and service specialists for BMW, Bentley, Jaguar, Land Rover, Mercedes, and Rolls Royce cars. John has served as a panel member for the Institute for Autism Research, the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and Autism Speaks. Mr. Robison is involved in TMS (transcranial magnetic stimulation) autism research at Harvard Medical School and Beth Israel Deaconess Medical Center, and serves on the advisory board for Mass General Hospital’s YouthCare program. Mr. Robison speaks publicly about his experience as a person on the autism spectrum, and is the author of popular books about living life with autism, Look Me in the Eye, My Life with Asperger’s, Be Different: Adventures of a Free-Range Aspergian and Raising Cubby. 

John is on the advisory board for AUTISM BRAINSTORM and participates, along with his wife Maripat,  in monthly Hangouts where he shares his advocacy activities in the autism community. John and Maripat teach workshops together on autism and the family.

John Elder Robison will serve as scholar in residence at William and Mary University: http://goo.gl/HizD1d

Wikipedia entry for John Elder Robison: http://goo.gl/bQuKP

John Elder Robison Curriculum Vitae: http://goo.gl/jFcyXq

Dr. Alisa G Woods: Dr. Alisa Woods focuses on the field of psychobiochemistry, specifically searching for biomarkers for neurodevelopmental disorders. Biomarkers are greatly needed for diagnosis, treatment monitoring and for the general understand of autism and associated disorders. Her current research projects include the investigation of the neuroanatomical localization of tumor-derived factor (TDF), as well as the study of putative biomarkers for autism spectrum disorder. She received her BS in psychology from SUNY Plattsburgh, PhD in biology from the University of California Irvine, post-doctoral training in neuroanatomy at the University of Freiburg, Germany, and Master’s degree in Mental Health Counseling at the University of Massachusetts, Boston.

Dr. Woods is on the advisory board for AUTISM BRAINSTORM and does a monthly Hangout called: Ask the Neurobiologist 

Dr. Woods and her research group are conducting a crowdfunding project. http://www.rockethub.com/projects/36715-protein-biomarkers-for-autism-spectrum-disorder

Dr. Woods discusses Biomarkers for ASD on public radio: http://goo.gl/Du0pqA

http://www.clarkson.edu/biosci_chemistry/faculty_pages/alisa.html

http://www.researchgate.net/profile/Alisa_Woods/publications

https://www.facebook.com/darie.lab.16

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