How it feels to be diagnosed with autism later in life

“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.

  • 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.

  • I know you can't change the past but it would have been useful to have been diagnosed 15 years earlier than I was finally diagnosed (at the age of 50)

    Similarly if I am diagnosed as being bipolar - I am waiting to be assessed - it would have been useful to have been diagnosed 15 years ago.

  • I'm 51 now, and I really wish I'd known that I might have autism a long time ago. It would have explained a lot.

    Some days I feel nothing but relief at knowing, but other days I feel sad and angry at the waste of time, energy and effort I put into trying to belong. I don't think autism was even on the radar when I was a child, I was just seen as weird, antisocial and awkward. I think maybe I still am. At least I don't beat myself up about it now.

  • I was diagnosed at the age of 62, fifteen months ago.

    I had suspected for some time I was autistic.  So it was no great surprise.  It did however give me some very mixed feelings.  The feeling that at last I knew what had been affecting me all my life, a possible reason for failing so many job interviews, a reason for my disliking certain smells and tastes, a reason for me being very good at some things that are quite complex, yet failing completely to understand the telephone, a reason why I could forget in the middle of a sentence what I  was saying, a reason why I was ok left to my own devices yet had trouble with change imposed by others, a reason for my complete lack of interest in socialising and parties.

    It also raised so much of thinking what might have been.  When I was brought up autism was only known of in hidden papers and periodicals.  It was certainly not something anyone would think of as explanation of how I was.  I was just socially inept, getting into trouble a school for misunderstandings, and frequently subject to the 'cure' for 'bad behaviour' by being physically punished, which was certainly encouraged in the schools of the time.  So thinking of what might have been was something that was not very productive.

    As an individual, I can only express my feelings on how autism affects me.  For a start, the diagnosis does not 'alter' me.  I am still the same person I have always been.  And I would not want to be anyone else, even with all the so called problems it gives me.  I am not ashamed of being autistic anymore than I am ashamed of having red hair (well it has faded considerably now unfortunately!).  However, I think as age progresses, some of the affects that autism has intensify.  I dislike change more than ever, I seem to be more liable to what others think is strange behaviour and unacceptable behaviour, and I am still liable to take things literally but this is very erratic.  I can get more lost than ever in things I am doing to the exclusion of other things, I am even less likely to socialise or even try, I can talk and talk and not let others get a word in and don't listen to a lot of what others say.  Certainly things have not 'calmed down'. 

    It has been said that grumpy old men started as grumpy young men.  And I think it should also be realised an autistic child becomes an autistic adult who becomes an autistic old person.  We do not go away, however much society tries to make out that autism affects only children.  It doesn't.  And although I do manage to function quite well in a lot of circumstances as I always have,, there is always that firework ready to give a spectacular display once the touch paper is lit.

  • It was very upsetting when I first encountered the idea. 

    Now the understanding of it seems a lot better.

    I do wonder what my parents were told. It was not called that in the 60's but other, scarier things. Whatever it was did include rigidity and lack of social intuition though. I do remember once being asked to draw something and the good doc decided I was drawing coffins - I had no idea what a coffin was. He had wanted to have me admitted but my mother put a stop to that.

    I think in the end it is how you as the cards you were dealt with, not to get too hung up on what these cards were. I am not sure what a diagnosis could do for me, even if I could get one but I don't live in the UK. I do think the misconception s and dislike my family had for my difficulties did not help though. On the one hand lauded for being in the verbally gifted range, but made to feel by peers at school like an idiot and the lowest of the low - not great. 

    Now at the day job, teaching, it is a question of being aware of learning difficulties with my students, what can be helped with and what not.

  • I'm 59. It raised its head when the A word came up with my niece and my mother raised that same word about how it had been with me as a child. But the literature (in 1983 upset me. I did not have a job at the the time, there was not much for graduates when I graduated either and my family had no faith. I could not have borne the idea that I might be disabled in a significant way, I could never have lived with myself if it were true.

    I have worked for 20 years abroad now, not always plain sailing, so most of those doubts are gone now. But there is a lot more stigma here in regard to anything that looks like disability, mental illness so there is no way I would seek a diagnosis here, and what would it do for me now?

    It would have been a lot more useful than all the misinformation that abounded when I was a child. It's too late. I think now. 

    My niece has a son now who definitely does have an autism diagnosis. I do get students who have a definite autism diagnosis. Some who I suspect might have this as an inner challenge. 

    So things go round full circle.