“He is wired differently to you and me, this child of mine. He doesn’t like loud noises, or dark spaces, or strangers touching his head”. These are the first lines from a poem a mother penned about her son 11-year-old son who has Asperger’s syndrome.
Sophie Billington goes on to explain how her son Tristan’s brain works differently: “He can see in an instant the pattern, the layout, the solution to a puzzle”, but that “the world judges” and “sees only the outbursts and over-reactions”. It seems the poem struck a chord – going viral after being posted on Facebook.
Although autism is predominantly diagnosed in childhood, increasing numbers of adults are finding out that they too have autism. This issue, of later life diagnosis, was brought to light recently after nature photographer and TV presenter, Chris Packham, went public with his experiences.
About 1% of the adult population has been diagnosed as on the autism spectrum – with more people diagnosed with autism than ever before. And yet, generally, the focus on who has autism is still mostly on infants, children and young adults.
This is despite the fact that autism can be defined as a lifelong neurodevelopmental disorder – characterised by differences in social communication and interaction with people and wider society – making it very much a label for people of all ages.
For me, it feels amazing, I couldn’t be happier, in fact, I’m having difficulty with containing my happiness, probably because I’m not meditating, but yeah, it feels soooooooooooo good, to finally have the answers to so many questions, both asked and unasked. It has been a total game changer. My life will never again be the same. Not that it is ever the same, lol, but you know what I mean. It changed everything. I love it.
I think it is good that there is greater awareness and more people being diagnosed, but I think more help should be provided for adults post-diagnosis. At the moment it is very much 'right off you go and get on with it' when in some cases like my own, I was left feeling a bit numb and confused (?overwhelmed) by the whole thing. Help on how to manage symptoms with meltdowns/shutdowns and day to day stress would be useful, in addition to self-care strategies. Trying to do this on your own, whilst trying to inform/educate those around you, can be exhausting. I am happy for my diagnosis, but I am also burnout from it too. It is a slow recovery that I am working on and I wouldn't want more people to have to handle it in this way.
Definitely. I’m working towards setting up pre and post diagnosis support because although my psychiatrist has done his best to support me, he didn’t seem to have the answers I needed. I got them from coming here. I’ve decided to do a masters in autism followed by a PhD because I think this stuff needs to be lead by autistic people because were so difficult to understand by nt’s but we all understand each other. I’ve got a lot of plans and just because I’m coming out of burnout, as my suppprt worker keeps reminding me, they’re not gonna happen tomorrow. But certainly this is something I’m working on.
Not good, a lot of people do not believe me and just think I made it up, even been told, everyone is a little Autistic and that I was just making it out, it was just me.
My company that I work for, says they help people like me, but can not reply to email, and tell my union rep, that I am so strange, they are worried about me, not as worried to talk to me like a human being.
I lost my key worker, when I very much needed her, no one else know what has been agreed with my manager, all forgoing, I got no one to talk about this to, just left, because my need is low.
I had my diagnosis in 2013, I am 48 now, but lucky to have a job, just I hate that job, supervisor think they motivate other by keeping secrets, not telling me what is wanted, may be due to not knowing the job to tell me.
Rules and laws are broke everyday, but no one cares, and I am seen as the problem, agreement with the trade union, terms and conditions forgotten or changed, to cover up for the mistakes by managers.
Lies are told, but I am the problem.
It seems strange that you feel lucky to have a job that you hate and it doesn’t sound like you feel lucky. I’m confused?