Posted on

Profound Autism: The first meaningful autism subgroup

Podcast: Play in new window | Download

Subscribe: RSS

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.

https://pubmed.ncbi.nlm.nih.gov/39031157

Posted on

All who wander are not lost. But many are lost and need help.

Podcast: Play in new window | Download

Subscribe: RSS

In recognition of September 26th, this podcast explores one of the more dangerous issues in autism: wandering. But it’s really not wandering in the traditional sense. Wandering in autism mostly means running off, bolting, deliberately with intent and without permission. Obviously this leads to some very dangerous situations for people on the spectrum. How can it be mitigated or understood? Some behavioral therapies are helpful, but new technologies have allowed for more options to bring back loved ones that have run off unexpectedly. Finally, the community needs to be better aware of possible stressors or triggers that trigger a wandering episode and work together with families to prevent running off. This problem is not caused by one thing, and the community needs multiple solutions to keep kids and adults safe.

www.september26.org

https://pubmed.ncbi.nlm.nih.gov/37492814/

https://pubmed.ncbi.nlm.nih.gov/32576789/

Posted on

September 26th is the day to prepare for an emergency

Podcast: Play in new window | Download

Subscribe: RSS

Today is September 26th. In collaboration with the National Council of Severe Autism, we encourage all families to rethink their safety plan for wandering, fire, and other emergencies including national disasters like hurricanes by going to September26.org and doing a home checkup and prepare. Also, participate in a webinar at noon eastern today here: https://us06web.zoom.us/j/81442112062.

Posted on

September26.org

Podcast: Play in new window | Download

Subscribe: RSS

Instead of a podcast, this week is a message in honor of the 1 year anniversary of the death of advocate and mother Feda Amaliti. Stay safe. Out of this tragedy, a website has been built that contains information for families on how to prepare for an unexpected emergency and what to do when it happens. Please go to www.september26.org.

Also, we need your help in figuring out what the needs of families with disabilities are in terms of safety training and education. Please fill out this survey: https://www.surveymonkey.com/r/LivingSafelyWithDisabilities2

Posted on

Why would you not get vaccinated?

Podcast: Play in new window | Download

Subscribe: RSS

There have been a lot of questions about the safety of the COVID-19 vaccine, especially now that it is being offered to everyone 12 and up. At first it was restricted to the elderly, now other groups are eligible. But not everyone wants the vaccine and in fact about 30% of Americans either refuse or have serious questions about it. On this week’s ASF podcast, we interview Dr. Pam Feliciano of SPARK to find out what families affected with ASD think of the vaccine, and answer other questions around the safety of the vaccine vs. the risks of getting COVID. Below is a new article about mortality of COVID in people with ASD.

https://link.springer.com/content/pdf/10.1007/s10803-021-05100-x.pdf

Posted on

Guys, we all need exercise

Podcast: Play in new window | Download

Subscribe: RSS

People with autism are less likely to be physically active and more likely to be sedentary.    A number of studies have looked into different physical activities, both group based and individually, on improvements in health as well as core features of autism, and most have had positive results.  New animal model research demonstrates a benefit of exercise using the maternal immune activation model of ASD, pruning back the excess of connections and cell fibers.  As people with autism also have too many connections in the brain, this may have a direct therapeutic benefit.  But besides all the scientific conjecture, we all need more exercise, physical activity interventions seem to only help, not hurt, people across the spectrum, and should be used to complement, not replace existing therapies.

 

 

https://www.ncbi.nlm.nih.gov/pubmed/29693781

 

https://www.ncbi.nlm.nih.gov/pubmed/31102193

 

https://link.springer.com/article/10.1007%2Fs10803-019-04050-9

 

https://www.cell.com/cell-reports/retrieve/pii/S2211124719306266?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS2211124719306266%3Fshowall%3Dtrue