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.

theconversation.com/how-it-feels-to-be-diagnosed-with-autism-later-in-life-92633

Parents
  • 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.

Reply
  • 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.

Children
No Data