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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
Where do we go from here? Need new appropriate mental health measures for autistic people - how can we know what treatments do or don’t work without appropriate ways of measuring mental health difficulties in autistic people?
We need to know what is driving mental health difficulties in autistic people. Increased risk factors, decreased protective factors, role of autistic characteristics? We need treatments for complex overlapping multiple diagnoses, rather than only for very specific diagnoses.
Now onto the discussion. Dena Gassner flagging up lifespan issues, what about cognitive decline in older autistic people? Let’s look at the whole lifespan!
Now we are discussing the importance of trauma informed care for autistic people who have experienced trauma in childhood, such as bullying and vulnerability. More research is really needed on this topic. I hear this being flagged again and again by autistic people ...
Connor Kerns discussing her work on trauma and adverse childhood of experiences in autistic people. Trauma has been neglected in autism research, but this is changing ...
Now discussing an important theme. There is a myth that needs to be dispelled, that practitioners have to be experts in autism in order to treat mental health problems in autistic people. We need to increase the confidence of practitioners to treat mental health in autistic ppl
Links to another theme, that autistic people are being excluded from treatment and support for mental health difficulties because they are autistic. This is contributing to a worldwide health inequality which needs to be urgently addressed.
Excited to hear about a new project just funded in Carla Mazefsky’s group, to adapt a treatment to improve emotion regulation skills in autistic young people with ID and who speak few or now words. Very under researched group of autistic ppl.
Kaite Gotham - where is the research on preventing mental health difficulties in autistic people? We are going to get to this - an exciting time to be in autism research! Let’s not just look at intervention. Connor Kerns - Yes, we need longitudinal studies to address this.
I’ve noticed this discussion resonates with our top 10 autism community suicide prevention priorities - understanding barriers to accessing treatment and support, and sleep difficulties as an important risk factor for mental health difficulties in autism. More in my talk later!
Now we are moving onto the next session: personal perspectives on mental health issues in autism. TW that this could be heavy going for people following @IACC_Autism today ...
Lindsey Nebeker speaking from a perspective of an autistic adult diagnosed as a child, and also as a sibling of someone who is on the spectrum. Feeling nervous and awkward to share this because it might upset ppl, but really important to share ...
TW Suicide attempt ...
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Lindsey describes her experience after a suicide attempt, “I wasn’t prepared to explain to everyone that what happened was not an accident” “all the warning-signs went unnoticed ... all ascribed to autism ... perhaps all due to masking used to cover all the darkness in my life”
Lindsey has an important lesson for us all - be careful of the words you use and judging others. Be kind, don’t make assumptions, words have power, “words can make or break you”.
I am finding Lindsey’s testimony so powerful and important. We have to be careful about how we talk about autism and autistic people. Talking about autism as a crisis or tragedy or something that causes pain to others, can make autistic people feel like they don’t belong ...
Dennis Mashue is now talking as a parent of an autistic child, “there will be tears” ... “we decided to re-write our narrative” from adversity and unhelpful assumptions, and make our own business to provide a sustainable livelihood for a minimally verbal autistic young person ...
A really moving story of overcoming adversity (foreclosure, unemployment) and challenging others unhelpful assumptions and pre-conceptions of autistic people who are minimally verbal ... “Tucker was invited to present his business model” across the US ...
