, 12 tweets, 3 min read
Thread: reflections on very late autism diagnosis #AllAutistics #ActuallyAutistic

In the 12 months since my autism diagnosis aged 58 I haven't written a blog or a best-selling book, gone on an adventure or found inner peace. But then I am still recovering from burn out. 1/
My deficit-focused autism diagnosis triggered an existential crisis even though it was done kindly. Being made aware of differences other people see as weaknesses compromised my self confidence. 2/
My mind is still replaying scenes from the past - looking at things through an autism lens - re-examining experiences and packing them away again. It's exhausting. 3/
When my 31 year old son's autism diagnosis swiftly followed my own I felt regret for the pain he had suffered, pride in our shared identity and even more determination to make things better for autistic people. 4/
It's striking how little progress on autistic equality has been made in the 10 years since the Autism Act. Maybe if our energy wasn't so sapped by coping with autism unfriendly environments we'd be protesting more. 5/
The autism community sounds like something welcoming but it's actually quite segmented. Some of us feel invisible and derisible, marginalised and ostracised rather than 'included'. 6/
Interacting with the online autistic community scared me to begin with - I saw other people being told off for following the 'wrong' person or saying the 'wrong' thing. There are still contentious topics I stay silent on. 7/
Specialist autism services struggle to keep pace with the demand for diagnosis so there's often little scope for aftercare. This compromises continuity and newly diagnosed people may feel like they are cast adrift. 8/
I was naively optimistic about finding post diagnostic support because I know how to navigate services - even so I've battled for a year to get access to good quality autism psycho-education developed and delivered by autistic people. 9/
When grappling with mental health services I found autism is not at all well understood. It is difficult to get appropriate assessments and interventions and benefits may outweigh the costs. I use an advocate now. 10/
Early intervention and support for children, families and young autistic adults is crucially important (I throughly endorse this) but the needs of older autistic people must not be neglected. 11/
We need a whole lifespan approach to autism that reflects the strengths, challenges, potential and diversity of #AllAutistic #ActuallyAutistic people and we need it now. 12/ End
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