Two recent papers suggest that a childhood diagnosis of ASD is important for adulthood quality of life and well being. But another one points out that it isn’t the only thing, or even the primary factor, involved in improved quality of life and well-being as autistic adults age. There are others, like comorbid mental health problems, demographic factors like gender and current age. These studies were conducted by autistic researchers and did an amazing thing – one tried to replicate the other. The media got the point of these findings wrong (shocker) so today’s #ASFpodcast explains what they mean.

https://journals.sagepub.com/doi/pdf/10.1177/13623613231173056

https://journals.sagepub.com/doi/pdf/10.1177/13623613221086700?casa_token=Pt_EcbUzuDQAAAAA:_qVIXsQGRxWgoSOp4-kpLdohAr6CiB5lFYbhx8kK5omusM4rfHTjeyuzSLbxPh1OFftAc4j8BkuzCA

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9296439/

There are many different factors that go into successful employment for people with and without autism.  As part of the ASF policy brief on employment, the US, Australia and Sweden held meetings with autistic adults, family members and employers and asked “what are the issues in your words”?  Then they were mapped onto areas of functioning, not ability or disability.  One thing that stands out is “matching interests and skills to job requirements”.  This is important, but a complicated issue.  This week’s podcast reviews what autistic people say, how it maps onto functioning and why we need to be careful about taking a one – sided approach to autism.

https://www.ncbi.nlm.nih.gov/pubmed/31276308

https://www.ncbi.nlm.nih.gov/pubmed/31177369

This week’s podcast is dedicated to the recently released INSAR – supported employment policy brief.  This was a 2 year project by ASF, Stony Brook, University, Karolinska Institute in Sweden and Curtin University in Australia to provide a cross-cultural perspective on getting autistic people who want to work, employed, and stay employed.  Thank you to all the participants in the surveys, community meetings, and GoldNFish for putting together a document that is not just informative, but fun to read.

Click to access 2018-insar_policy_brief.pdf

Work and study

There is demonstrated genetic overlap between many neurodevelopment disorders including  ASD, ADHD, and schizophrenia, and now there is data showing similarities in the structure and size of the brains in people with autism and those with ADHD.  These differences depend on how severe social difficulties are, but the similarities are seen with ASD and ADHD, but not OCD.   In addition, this week there are new depressing results from the Interactive Autism Network on unemployment and females with ASD.  The results may not surprise you, but they will upset you.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6361977/

https://www.ncbi.nlm.nih.gov/pubmed/30729799

This week, Melissa Scott from Curtin University, a partner in the international policy brief on employment for people with autism, discusses the first paper out of this collaboration:  a scoping review of the existing research out there on employment practices.  Surprisingly, there was one crucial element missing as a focus in all the intervention studies  –  the environment.  Dr. Scott discusses what else was learned from this scoping review, and how the findings can help people with autism not just obtain, but maintain employment, through constructive policy.   ASF is a proud partner on this policy brief, and Curtin University has been an amazing collaborator.

https://www.ncbi.nlm.nih.gov/pubmed/30073870

Due to popular demand, this podcast is dedicated to the International Classification of Functioning, or ICF.  This is a tool used to measure functioning in people with not just autism, but across individuals.  As the expert guest, Soheil Mahdi, describes in this podcast, it isn’t about replacing a diagnosis of autism, but complementing the diagnosis with a description of ways the person is functioning in society, what strengths they have and how it that may identify opportunities for autistic individuals.  Soheil is a fellow at the Karolinska Institute and ASF is collaborating with him on the employment policy brief.  Thank you for suggesting this topic for a podcast!

Here are some other resources of interest:  https://ki.se/en/kind/startpage

In case you didn’t have time to jump on a plane and fly to the Netherlands last week for the International Society of Autism Research meeting, this week’s podcast is a short summary of just a few of the presentations.  There was more of an emphasis on what has been called “real life” research questions like employment, quality of life, and relationships.  As a result, some of the more basic science questions around autism are now being presented at other meetings.  This is a shame.   This podcast follows some of those basic science questions to the now translational opportunities that were presented at the meeting.  It also highlights some newer findings that will provide help to people at all ages who need supports and services.

Labor Day is a time to appreciate and honor all those people who work to make this world a better place.  People with autism do that, but they also want to get paid and be employed just like anyone else.  This Labor Day, the podcast summarizes challenges to studying employment in people with ASD, what we know, and what is being done in a collaboration between ASF, Curtin University in Australia, the Karolinska Institute and Stony Brook University in Long Island. This is the INSAR supported policy brief project that will be completed next year, but you will all be receiving a request to fill out a survey about employment in the coming weeks.  In addition, what does employment mean for people with autism?  A NY Times article recently highlighted the journey from childhood to adulthood and what having a job means.

This week’s International Meeting for Autism Research was filled with important presentations on the multiple causes of autism, interventions, diagnosis, neurobiology, services, family and self-advocate perspectives, the list goes on and on.  There is a great recap on www.spectrumnews.org.  An underlying theme ran through the presentations.  That is, that the previous “well, we don’t see differences because there is lots of heterogeneity in autism” explanation isn’t cutting it anymore.  We know people with autism are different, and parents, self-advocates and researchers are starting to deal with it by stratifying groups by their genetic backgrounds.  While not a complete solution to this challenge, research at IMFAR shows that identifying different subgroups based on genetics is helping to explain symptoms.