Read on Twitter
Two years on.
#Thread about life after a very late #autism diagnosis.
I havenāt planned any of this.
Iām just going to go with the flow.
#autistic
#ActuallyAutistic
#AllAutistics
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#Thread about life after a very late #autism diagnosis.
I havenāt planned any of this.
Iām just going to go with the flow.
#autistic
#ActuallyAutistic
#AllAutistics
1/
I discovered I was #autistic when I was 58 years old, soon to be 59. Iād lived so much of my life some people wondered why I even found it necessary to be assessed.
The truth is, although I seemed to be coping, I was way out of my depth most of my life.
#autism
#AllAutistics
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The truth is, although I seemed to be coping, I was way out of my depth most of my life.
#autism
#AllAutistics
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Knowing I was out of my depth, but not understanding why, or what to do about it, made me very anxious. I hid behind a smile as a teenager and young adult. Academic giftedness and shyness explained to others why I was ādifferentā, but I knew there was so much more to it.
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Over time I began to feel unsafe around other people. This was the cumulative effect of bullying, exploitation and well-intended, but unhelpful, encouragement to modify my naturally #autistic #communication style. The cost of fitting in was losing touch with who I really was.
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I count myself exceptionally lucky to have developed a strong sense of self during childhood and adolescence. My family were accepting and supportive and I got a scholarship to a school where it was OK to be a swot. This inner confidence saved me later on.
#autism
#autistic
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#autism
#autistic
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When I hit the difficult times I could tap back into that sense of self. In abusive situations however much people tried to gaslight me, convince me I was wrong or intimidate me, I managed to find the strength to hold on. I was anxious and fearless at the same time.
#autistic
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#autistic
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Understanding my self and others was central to my social work training in my early 30s. When I worked with families I could see how relationship dynamics worked. I recognised the complexity of situations when seen from a biopsychosocioeconomic perspective, and I had empathy.
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What I didnāt understand back then (this is something that Iām still working on) was how to sustain a #career when the pressures of working life can become so intense. My younger self pushed through #exhaustion to keep up with colleagues. Now I can be kinder to myself.
#autism
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#autism
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I can be kinder to myself because I got an #autism diagnosis. I was advised to do benign #work, and to work part time. But this is only possible because circumstances allow me to do this. What about #autistic people who have to work full time? Most of us need accommodations.
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What to do about work was one of the most pressing issues when I got my #autism diagnosis 2 years ago. At the time I had 5 part-time and casual jobs. I gave all of these up to work full-time in an autism-related role, but this turned out not to be a good move.
#autistic
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#autistic
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Quite apart from the strain of working full time and commuting part of the week, reading research that presented such a medicalised, deficit-focused view of #autism wasnāt good for my soul. Iām very grateful to others for reporting back on papers I can no longer bear to read.
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For my next #career move I stuck to the guidelines Iād been given (close to home, part-time, benign work). I started working for a local greengrocer just before the pandemic, and loved it. Being surrounded by flowers, fruit and vegetables was #SensoryJoy until #Covid.
#autism
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#autism
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My best motivational skills werenāt enough to get some of our customers to cooperate with social distancing measures. I got more and more anxious about infecting my partner, whoās at high risk from #COVID19. I decontaminated myself as soon as I got home, and we slept apart.
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As is often the case when I get anxious my body keeps the score. Gastritis, urticaria and blurred vision became difficult to ignore. I could have hugged the GP who deviated from the official script and told me to stay off work until after the peak of the first wave.
#autism
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#autism
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Being me, I was following local infection rates very closely and as soon as things eased off I went back to work in the shop. A few customers were very angry and unpleasant about social distancing. As they shouted about their rights I could feel their spittle landing on me.
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Then something magical happened. I was sitting under the apple tree in the sun when a job alert popped up on Indeed. The beginning of the company postcode was the same as mine (it was local) and it was a manufacturing role which really appealed to me (repetitive manual work).
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I went inside and applied immediately, not expecting to hear anything. But then I was offered a phone interview. I didnāt intend to say I was autistic so early on, but when asked about tolerance of repetitive tasks I spontaneously revealed this as my autistic super strength!
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A face to face interview and half day work trial followed and Iāve been very happily employed for nearly 3 months now. It makes all the difference not to be drained and exhausted by work, and to feel safe. I work 2 days a week and have plenty of time for other interests.
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If I could wave a magic wand I would make the right sort of work available to other autistic people. We can do anything at all, given the right environment and support, but so often these are lacking. My disjointed career prior to my autism diagnosis bears testimony to this.
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Work can be a gateway to many positive things in life - it improves our housing options, allows us to live more comfortably, enhances our social standing with other people (we shouldnāt be judged for what we do, but we are). It can also make us more healthy if itās good work.
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Apart from sorting out my working life Iāve spent the 2 years since my autism diagnosis coming to terms with my past. Reassessing things with an #autism lens, forgiving myself and other people. Working out how to live life openly, acceptingly and autistically. It isnāt easy.
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The main difficulty for me is residual #trauma from past events. Iām consciously aware of it, and Iāve tried all kinds of strategies to deal with it. This manifests itself in hyper-vigilance, anxiety, and a disproportionate response to things that act as triggers.
#autism
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#autism
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I often wake gripped by anxiety because of a dream. In our sleep the mind takes us places we avoid while awake. Although #IAPT and #CMHT services work for some people they didnāt for me. Very basic requirements like establishing trust and effective communication were unmet.
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Itās difficult for mental health staff without a good understanding of autism to provide services for autistic people. That essential therapeutic alliance canāt develop if thereās confusion and mistrust. After a long search Iāve found an autistic therapist (not on the NHS).
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Once again, the outcome depends on financial resources. It shouldnāt be like this. Iād go as far as to say almost every late diagnosed #autistic person has probably experienced significant #trauma. If they hadnāt they wouldnāt ever have got to the point of #autism diagnosis.
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The damage caused by decades of difficult life experiences needs expert intervention to help resolve it. In reality we are often passed on to contracted out post autism diagnosis services staffed by unqualified, poorly paid support workers. This really isnāt good enough.
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Iām a big advocate of autistic led support services. I was lucky enough to be allowed to attend a series of group sessions which were technically out of area. Being among other autistic people and learning about how we experience the world differently was hugely empowering.
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Something else really positive that came out of my autism diagnosis was recognising the added dimensions being autistic brings to my life. Although sensory sensitivity can, quite literally, be a pain at times, this is also the reason I experience such incredible #SensoryJoy.
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The last two years have involved a lot of work. This has been distressing at times but it had to be done for me to achieve security and contentment. Revisiting trauma can be very traumatic, especially without anyone alongside you. And thereās yet more work to be done.
#autism
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#autism
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