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#Thread about #autism and #waiting for #Advent
Most of my life was spent waiting to find out who I was. I did lots of things, my life wasnât on pause, but itâs only in the last 2 years Iâve had âthe knowledgeâ to make sense of things.
#autistic
#AllAutistics
#ActuallyAutistic
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Most of my life was spent waiting to find out who I was. I did lots of things, my life wasnât on pause, but itâs only in the last 2 years Iâve had âthe knowledgeâ to make sense of things.
#autistic
#AllAutistics
#ActuallyAutistic
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In early childhood siblings and cousins were natural playmates. But I still needed time alone. The intensity of being with other people easily overwhelmed me. I retreated into books, immersing myself in fiction that became my instruction manual for human behaviour.
#autistic
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#autistic
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The differences between me and other people became more obvious in my teenage years. I had little understanding of how to join large friendship groups, and if Iâm honest even less motivation. Relating to one person at a time was so much more satisfying. But I didnât know why.
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In adulthood I wanted another person to complete me. I longed to fall in love and find âthe oneâ. Then I could take my place in the world more confidently. Romantic partners often had social abilities I lacked, and I became part of their friendship groups, somewhat awkwardly.
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The struggle to fit in applied at work as well. If only I could find a job that was the perfect fit things would be OK. I could stay, thrive and develop my career. Except that was a distraction from the real issue. For most of my life I had no idea who I really was.
#autistic
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#autistic
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In the absence of a positive explanation for my differences I thought I lacked sociability, energy and staying power. And yet when I put my mind to something I had intense determination, huge compassion, absolute commitment. It took me many decades to understand why.
#autism
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#autism
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Lots of older people will never discover that they are autistic. It saddens me to think they may end their lives feeling they are flawed instead of just being different. An autism diagnosis isnât a panacea, but it has been a great consolation to me. Things finally make sense.
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I still experience sensory sensitivity, social challenges, misunderstandings - but knowing Iâm autistic gives me a positive identity. I know who I am, not just what Iâm not. I am complete in myself not lacking some vital component. Iâm a fully human, empathic, autistic person.
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During the decades I waited to find out I was autistic there were moments this discovery could have been made. Simple screening questions would have revealed the cause of many of my struggles. By the 1990s autism in women was starting to be recognised (I was in my 30s then).
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But GPs and mental health professionals are often too willing to see chronic anxiety and depression in women as normal. They lack curiosity to ask why interventions donât work. They donât look for clues in someoneâs life story, relationships, career. So I waited, a long time.
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Many people are still waiting to discover they are autistic. Some people are doing perfectly OK. They may never need to know. Others are on NHS autism assessment waiting lists, they are misdiagnosed with personality disorders, they are in prisons and homelessness shelters.
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When you think you might be autistic, or know deep inside that you are, the wait for this to be authenticated by an autism assessment can be excruciating. After waiting nearly sixty years to make sense of my life the thought that this might not be confirmed felt like torture.
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If autism wasnât the explanation I would be cast adrift again, searching for another explanation. But when the wait was over, and I prepared to hear the assessorsâ decision, I knew with absolute certainty I was autistic, because Iâd recognised myself in other autistic people.
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Everyone waiting and wondering about being autistic is accepted by me. Itâs only through good fortune that I got my autism diagnosis in 2018. I could still be languishing on a waiting list. Medical professionals and #autism experts donât define ourselves, we define ourselves.
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I turned on the radio last night just as Simon Baron Cohen was talking about his new book. I find it annoying when scientists try to describe us. We always seem to end up being reduced to mere traits. And Iâm fed up of hearing âeveryoneâs a little bit autisticâ. Theyâre not.
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What Iâm waiting for now is a radical revision of how autism is understood and responded to. Nothing short of a revolution will do. This wonât be driven by autism charities, GPs, psychologists, psychiatrists, OTs or SLTs, but by autistic people ourselves, and our true allies.
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The role of research in transforming the experiences of autistic people is important. Relatively little research at the moment resonates with concerns we as autistic people have about our lives. The worst sort of research seeks to invalidate and eliminate us, to edit us out.
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When I read research promoting the interests of autistic people, and which is done with us not to us, I want to punch the air in celebration. Thank goodness for those few brave researchers who push against the prevailing culture. Itâs hard as the funding is mostly elsewhere.
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Before I started writing this thread I looked up the meaning of advent. My life was transformed by recognising myself as #autistic. After a long wait it felt like it happened just in time. Autistic #identity doesnât come pre-formed, it develops over time, if conditions allow.
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My authentic identity is gradually emerging as I gain confidence in my perception and communication style. In a world that doesnât attach much value to autistic people, apart from savants and geniuses, itâs a challenge to find somewhere we can flourish and be our selves.
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