Many autistic people have worse daily living skills (DLS) than would be expected based on their intellectual ability (IQ). Better daily living skills have been linked to more positive outcomes in those with autism. Previous research looking at the gap between DLS and IQ focused on individuals at a single point in time, providing a snapshot of their current abilities rather than assessing these abilities across the lifespan. This study will better describe the discrepancy in DLS and IQ by engaging an existing longitudinal cohort of autistic individuals that has been followed from 2-33 years of age, focusing on specific DLS rather than lumping them all together. These findings will allow for more focused intervention targets in adults with profound autism.
Developing Intervention Targets for Adults with Profound Autism based on Daily Living Skills and Cognitive Ability
Compared to people without autism, the risk of Alzheimer’s disease is 2.6 times higher in people with autism, and they are twice as likely to die prematurely – with autistic women being at even higher risk for premature death. However, very few research studies focus on or even include autistic adults who are middle aged and older. This project capitalizes on a cohort of older autistic and neurotypical adults who receive assessments of brain structure, memory function, and intellectual ability at multiple timepoints as they age. Integrating brain imaging, genomic techniques, and statistical tools, this researcher will determine if autism risk genes also lead to memory decline and how these genes affect brain structure and the cortical thinning that is typical in all older adults. In addition, they will examine sex differences in autistic adult memory and changes in the memory system across age, with the goal of identifying sex-specific biomarkers that can be used to predict who will be most vulnerable to adverse aging outcomes. This work has implications for the future development of precision medicine and other interventions that will increase the quality of life for older adults across the spectrum.
On this week’s podcast episode, special correspondent Mia Kotikovski discusses challenges in getting emergency care for those with autism, what doctors and hospitals can do to ease the stressors associated with places like the ER. This is a huge issue for families as many “simple” ER visits for their autistic family members can cause such stress it provokes severe reactions, especially in those with sensory issues, intellectual disability or those who cannot express their pain.
Instead of grouping together people with autism based on traditional severity scores, what if groupings were done based on functional outcome? Would this help better understand the broad spectrum of autism and why some people with autism are so different than others? Researchers at the University of Minnesota led by Kyle Sterrett, together with UCLA and UNC utilized a study that followed children with autism in the early 1990’s into their adulthood, in the 2020’s. They created and asked these families a set of questions (included in the manuscript below) to help identify levels of functioning in people with autism. This was done to help them and their families get the right support at right time. They found that these questions could differentiate people with Profound Autism based on things like level of independence and safety concerns. Dr. Sterrett talks with us on this week’s podcast to explain what they did and why it is so important.
In part 1 of a 3 part series on Profound Autism, ASF interviews Emily Ferguson, PhD from @Stanford shares what she learned by asking parents and caregivers of Profound Autism “what do you need?” The short answer was: “There is No Help“. The responses were overwhelmingly focused on inclusion in any program or service, since they are normally excluded from traditional programs. They also call for better multidisciplinary medical management. Needs were associated with a number of factors. Why talk to caregivers? Their perspectives help identify both research and service priorities in the future.
In case you missed it, listen to Alison Singer with Gina Kavali on her podcast @LifeWiththeSpectrum. Alison talks about the importance of autism research and science in general, and how families can get involved.
On this week’s podcast, Mia Kotivkoski, founder of her own 5013c and recent graduate of Stony Brook University, reviews why understanding cultural and contextual factors influence not just an autism diagnosis but general health and outcomes of a broad group of people. They include immigrants, racial and ethnic differences, and socio-economic factors. What can be done? Listen to this week’s podcast to learn more.
https://www.sciencedirect.com/science/article/pii/S1750946718300758?via%3Dihub
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7614360
https://www.scientificamerican.com/article/why-are-there-so-few-autism-specialists
General psychiatrists are trained deal with a range of psychiatric issues in a variety of areas, but very few have experience helping families of children and adults with autism. This is training that is desperately needed, as, like other professions, there are not enough psychiatrists to help families and waitlists are staggering. In this week’s podcast episode, Dr. Arthur Westover at UT Southwestern discusses some potentially simple solutions, what he has tried and worked, and how families and advocacy groups can get more involved to ensure that doctors know about the unique and difficult psychiatric issues that autistic people face. His ideas will not happen spontaneously, it’s going to take work to make psychiatrists more tuned into the needs of the autism community. He even wrote a paper (link below).
Did you miss the ASF 2024 Day of Learning and can’t wait for the videos to be posted? This is a 17 minute brief summary of what was discussed, but unfortunately, with no visuals. Don’t just listen to the podcast, watch the videos when they are posted. Also included in this podcast is a shoutout to the Profound Autism Summit which brought together hundreds of advocates around those who need 24/7 care for their lives. The link to their advocacy page is here: https://www.votervoice.net/ProfoundAutism/campaigns/112917/respond
This podcast has not covered transition from adolescence to adulthood in the past, probably because there has not been a lot of research in this area. Luckily, recently there has been a surge of investigations and scientifically – supported interventions and recommendations for individuals who are transitioning to adulthood. This podcast episode reviews the latest in where the gaps are and identified some (of many) areas that need further research. Here are the references that will be helpful.
https://pubmed.ncbi.nlm.nih.gov/38493400/
https://pubmed.ncbi.nlm.nih.gov/38501189/
Adults with profound autism have unique healthcare needs that are often overlooked by providers. This student will expand an existing project to add a cohort of middle and older-aged autistic adults in a residential facility to measure overall health, co-occurring conditions, healthcare quality & satisfaction, and quality of life. Determining how co-morbid health conditions change as autistic adults age will enable services to be delivered that better meet people’s needs.
Up to 90% of people with autism experience GI distress. Although these symptoms often occur in children and adults, there is a lack of research focused on addressing GI dysfunction in autistic adults. A current study is gathering input from a group of autistic adults in order to develop a set of recommendations for improving GI health in adults. This grant will provide funding to expedite data collection, analysis, and dissemination of the outcomes of this study so that results can be seen up to a year earlier. These recommendations will shape future research by prioritizing the most relevant GI concerns identified by autistic adults and interdisciplinary collaborators, leading to the development of better treatments and overall approaches to GI health in people with autism.