Thread by @Sarah_NottsUni

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 ...

A happy ending, Alison organised in home support tailored to her son. They have been “abandoned” by every provider, but with their tailored support, Mika has made “incredible progress” and is now accessing the community

Alison bringing in her academic expertise “We need more treatment options” for autistic children with mental health problems to achieve better quality of life. We need to stop autism support services rejecting autistic ppl with mental health problems - another myth to bust!

I see parallels in Alison’s talk to similar issues regarding support and treatment of autistic people with co-occurring mental health conditions in the UK, particularly regarding long and multiple hospital stays far from home and risk of abuse from staff and care providers ...

Now time for discussion. Dena Gassner - we shouldn’t continually ask autistic people to change, this is damaging the mental wellness of autistic people, neurotypical people must also adapt and learn to be inclusive of neurodiversity

Heartbreaking personal stories shared in this discussion session, impossible to capture in a tweet (can’t find the words). David Amaral asks if there is a group of lawyers to help with advocacy to prevent autistic children being removed and placed into poor care - this is lacking

Now onto the next session, discussing anxiety and OCD in autism. First up Connor Kerns talking about anxiety disorders and obsessive compulsive disorders in autistic people.

Connor Kerns: Anxiety can be adaptive, but it can become a real problem. We need to be careful that we don’t over diagnose - giving 5 diagnoses when 1 fits better. However, we also need to be careful not to attribute everything to autism and ignore co-occurring conditions

Huge range of prevalence estimates of anxiety in autism 11-84% So what is anxiety in autistic people - how do we better define and measure this so we don’t under or over diagnose. Research shows both missing anxiety and over pathologising are an issue ...

Research shows that anxiety in autistic people looks different, and might not fit current diagnostic criteria. We are using assessments developed to capture anxiety as it is defined in non-autistic people, will these work? Do we need new measures developed for autistic ppl?

Connor Kerns data shows high prevalence of a different presentation of anxiety in autistic children+young people (15% distinct anxiety, 17% traditional anxiety, 31% both), traditional anxiety assessment tools also poor at detecting anxiety in autistic children+young people

What is “distinct anxiety”? Brief examples provided are - unusual fears and phobias, e.g. change, sensory aspects of the environment, less fear of negative evaluation ... @jacquirodgers @CuesStudy do you have further examples?

Connor Kerns says we need to talk to autistic people to find out what they are worried about, ask if we are measuring this properly, and also if the anxiety is helping (adaptive and OK) or hindering (a problem), so we can think about whether a diagnosis is needed

TW: The next @IACC_Autism session is about #depression and #suicide in #autism.

I am presenting alongside Katherine Gotham, Darren Hedley and @avkirbyPhD . So I won’t be able to tweet as much, but you can access the live stream of the session here: videocast.nih.gov

Last presentation of the day from Brenna Maddox about mental health service issues for autistic people - this is directly addressing our top autism community priority for suicide prevention! Excited to see this important research.

Brenna Maddox says a minority of practitioners feel confident in adapting suicide safety plans with autistic people. Autistic people also say that they cannot find therapists who know much about autism. Most evidence based practices are not designed for autistic people.

This is SO similar to what we have found in the UK @AMASEdin @LauraMayCrane @journalautism - autistic people’s barriers to appropriate treatment and support is a worldwide issue. We need to do better to prevent suicide and mental health problems in autistic people!

Possible solutions? Clinician training, so they are both skilled and confident in adapting treatment for autistic people (children and adults). Effective implementation strategies to make sure changes last in clinicians practice and systems ...

Community-academic partnerships so clinicians can actually use and implement the adapted treatments, and autistic people will actually benefit from these - a key theme throughout today’s @IACC_Autism! Co-production not optional!

Now for the discussion. Suggestion from an autistic advocate - perhaps we should be talking to and learning from autistic people who are also practitioners - great point! A way to get “fresh thinking” on barriers and enablers to treatment and support

Now we are talking about peer to peer support - autistic people not necessarily with clinical training providing excellent support for their peers, this is a really valuable source of learning and support for autistic people and clinicians

Also the importance of training practitioners to be flexible and adaptable in their practice, rather than being trained in one very specific treatment or approach for one very specific problem

That’s all from @IACC_Autism mental health in autism workshop. I look forward to helping develop the report to “bust myths”: autistic people do experience mental health problems, these are treatable, we need to improve access+availability of appropriate treatment and support

@threadreaderapp please unroll - hopefully this will show all my @IACC_Autism tweets from the day ...