Autistic Adults’ Experience in Mental Health Services​

Many autistic people have mental health difficulties throughout their lives. Yet, there are few mental health treatments for autistic people, particularly once they are adults.

Janina Brede and Ailsa Russell discussed how their work can help us to better understand what it's like for autistic adults when they try & get help and explore how this research can help improve mental health services and future research.

Kana Umagami explored how Janina and Ailsa's work relates to her research on loneliness in autistic adults as there are some similarities between autistic adults’ experiences with mental health services and those with loneliness.

Presentation: 08:08
Q&A: 48:07

Autistica is the UK’s leading autism research and campaigning charity. Our vision is a world where every autistic person lives a happy, healthy, long life. Our mission is to enable breakthroughs by working with autistic people, funding research and shaping policy to make more of a difference.

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[amberhale]

My experiences have been horrific. I don't go near mental health services anymore.

[ericwelvaert]

At a meeting of autistic adults in Brussels, someone asked if anyone had something positive to say about mental health treatment. Everybody remained silent.

[MykeWinters]

Im on the spectrum but not yet diagnosed. My mental health services experiences here in the uk (Cornwall) are encapsulated into one word “abandoned” and you can’t blame that on budget cuts or lack of staff. Disgusting!

[oxrainbowkidpipxo]

I was diagnosed last week with autism, I have obviously ‘fallen through the cracks’ as it were. My first diagnosis of mental health conditions was depression at 14, and generalised anxiety disorder at 22. In talking therapy for depression when I was 14, the therapist asked me how I felt. All I could say was ‘I don’t know’ because I couldn’t identify emotions. She didn’t ask anything else, so I sat in silence for three sessions just staring at the table shrugging at her.

I’ve had CBT three times for anxiety which is the only thing I’m offered on the NHS. Every time I have done it I have been asked to expose myself to things that cause my anxiety such as crowds, and loud noises (once was told to go and stand directly under the railway bridge by the therapist because I was afraid of going under it). I realised a lot later that these things never worked because they actually cause me discomfort and sometimes actual pain because they are sensory issues. All that time I was confusing sensory overload with panic attacks and I didn’t understand why forcing myself into those situations wasn’t helping because that was supposed to work and it’s not like I had any other options on the NHS either.

[sallyniemann]

I had a psychologist fall asleep while I was telling my story...clinicians repeatedly tell me "we can medicate your ADHD but there's nothing I can do about your autism". Aspires are great at independence, it's interdependence where the challenge lies.

[billieread]

Recently diagnosed with asd in the last 6 weeks.. the asd process only took 5 months adhd process is a nightmare

[l.w]

Autism is often overlooked in females, especially with ptsd /c-ptsd. Wrongly labeled as personality disordered and retraumatized in therapeutic relationships, labeled as 'overly sensitive', 'projection' etc. Research on how many undiagnosed neurodivergents are among traumatized adults is needed, as well as education of so-called professionals who still think autistics never have theory or mind or empathy or always are alexithymic etc.

[nickglover]

Useful. Mental health services can often not work for Autistic people. For example, depression in Autistic people may be the end symptom of terrible discrimination, severe loneliness, adverse childhood experiences and other trauma states including Alexithymia. Psychotherapists and many other allied health care professions have not undertaken any serious Autism training suitable for their role and of course accessible and acceptable (and hop0efully useful) for Autistic Community members. Also you need more resilient communities and connected community, rather than just treating individuals who experience (as an end result of) community neglect and marginality. Finally the idea of 'adapting' therapies to 'better suit' Autistic people (that approach) has a poor evidence base. Also so called sensory sensitivities are not core to Autism. In fact sensory disturbances are a separate condition. Unless you realize this you just conclude that sensory issues are part of Autism when they are not.

[Weird_guy]

mental heath service wont help me at all, there is no where left to try and no one to talk to.