Listening to Dr Petrus de Vries keynote #INSAR2021. So interesting to hear about his experiences of identifying priorities for future research, practice and shared accepted language involving stakeholders (academics, those affected by a condition, and those who support them) 1/5
Also how this involvement and consultation led to research which made a real difference to the lives of those with Tuberous Sclerosis - important lessons for autism research 2/5 #INSAR2021
I’d like to add this excellent paper by @SueReviews which gives guidance and examples of autism research partnerships:
Really important that we conduct research prioritised by the community to ensure we do research which makes a meaningful difference to people’s lives - great take home message!👏👏👏 4/5 #INSAR2021
This is certainly my aim and great to see this represented in a keynote at #INSAR2021. Also see our @AutismINSAR policy brief “Autism community priorities for suicide prevention”
Delighted to share our INSAR policy brief published by @AutismINSAR "Autism community priorities for suicide prevention" available here (free): tinyurl.com/5x424625#INSAR2021 1/6
This @AutismINSAR policy brief provides an overview of current #suicide in #autism research and international policy initiatives, community priorities for future research, recommendations for policy+practice to prevent suicide in #autistic people, and next steps #INSAR2021 2/6
Want to know more about how we carried out this work, and what those who participated thought? Then check out our webpage with a short summary and videos describing the process: sites.google.com/view/mentalhea… #INSAR2021 3/6
New Papers! 1/6 Autistic adults interpret and respond to a suicidality assessment tool (developed for the general population) differently to non-autistic adults. Suggests we need to adapt assessments for autistic ppl (free): link.springer.com/article/10.100…
2/6 We explore how a suicide theory (the interpersonal psychological theory) developed for the general population applies to autistic people, and any differences between autistic and non-autistic people: link.springer.com/article/10.100…
3/6 A systematic review of available suicidality assessment tools for autistic children and young people - we find no validated tools are available for this group: link.springer.com/article/10.100…
I found another person working to understand #suicide in #autistic people at #iasp2019! Kairi Kolves from Griffith Uni describing a national longitudinal register based study. We need more large scale studies, it’s encouraging to see more of this research taking place worldwide
Over 35,000 autistic people included in the national study in Belgium compared to 6million in the gen pop. Looked at suicidal behaviour and death by suicide and role of diagnosis, age, and sex.
Rate of death by suicide highest in those diagnosed with Asperger syndrome compared to other subtypes (similar finding to other work) #IASP2019
Dennis Mashue now talking about his experience of being a late diagnosed autistic adult - “nothing made sense ... I learnt nothing in school ... years later I saw my son experiencing the same issues ... I now know I experienced autistic burnout” ...
Alison Morantz now speaking as an academic and a parent of an autistic person who experiences severe co-occurring mental health difficulties (schizophrenia)
Alison had extreme difficulty in finding appropriate treatment for her son. No traditional treatment worked, “there was nowhere else for Mika to go” “we spent the next 2 yrs following Mika around the country” ... lots of instability, and vulnerability to abuse from staff ...
Carla Mazefsky up first @IACC_Autism workshop, introducing the current state of the evidence re mental health research in autistic people - very proud to have contributed a chapter to the new Oxford Handbook on this topic edited by Carla and team
Mental health difficulties in autistic peole should be treatable! BUT although research is rapidly growing, evidence for appropriate treatments is lacking, particularly for autistic people with ID or who speak few or no words
This is a lifespan issue - autistic adults may be more at risk of mental health problems, but very little research into older adults. We know virtually nothing about the effect of medication for mental health problems is autistic people