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| Autism diagnosis: 'I want 40 years of my life back' | Autism diagnosis: 'I want 40 years of my life back' |
| (12 days later) | |
| For most of his life, Barney Angliss struggled to fit in. At the age of 49, he finally had a diagnosis that helped him understand why. | For most of his life, Barney Angliss struggled to fit in. At the age of 49, he finally had a diagnosis that helped him understand why. |
| As a child, he remembers his family not allowing him to go to a new school. "They thought I would be bullied to death". | As a child, he remembers his family not allowing him to go to a new school. "They thought I would be bullied to death". |
| Although he was good with words he had few friends and - by his own admission - he lacked empathy and social skills. | Although he was good with words he had few friends and - by his own admission - he lacked empathy and social skills. |
| By the time he had a home, a family and a job as a teacher, "catastrophic thoughts" were building up. | By the time he had a home, a family and a job as a teacher, "catastrophic thoughts" were building up. |
| He felt increasingly depressed and inadequate, and his physical health was suffering too - with severe bouts of asthma becoming more and more regular. | He felt increasingly depressed and inadequate, and his physical health was suffering too - with severe bouts of asthma becoming more and more regular. |
| Finally, prompted by his wife, Barney saw a clinical psychologist - and was diagnosed with Asperger's. | Finally, prompted by his wife, Barney saw a clinical psychologist - and was diagnosed with Asperger's. |
| He says suddenly his lack of social skills, his bluntness and constant search for order made sense. "It explains all of my failures." | He says suddenly his lack of social skills, his bluntness and constant search for order made sense. "It explains all of my failures." |
| Robert Greenall, 53, a BBC journalist, recently learnt he is also on the autistic spectrum. | Robert Greenall, 53, a BBC journalist, recently learnt he is also on the autistic spectrum. |
| "All my life, I'd been wondering why I could never quite 'get' other people, and they could never quite 'get' me," he says. | "All my life, I'd been wondering why I could never quite 'get' other people, and they could never quite 'get' me," he says. |
| "You're an enigma" or "you're on another planet" were jibes he heard frequently. | "You're an enigma" or "you're on another planet" were jibes he heard frequently. |
| For a long time he thought it was to do with being an only child, or being sent to boarding school and having an isolated childhood. | For a long time he thought it was to do with being an only child, or being sent to boarding school and having an isolated childhood. |
| While he loved looking at maps and reading about railways, other boys seized on his awkwardness and lack of confidence on the sports field. | While he loved looking at maps and reading about railways, other boys seized on his awkwardness and lack of confidence on the sports field. |
| As an adult, he found social interaction hard and small talk at parties a nightmare. He wondered why he couldn't read people's emotions and show empathy. | As an adult, he found social interaction hard and small talk at parties a nightmare. He wondered why he couldn't read people's emotions and show empathy. |
| 'I felt like an alien' | 'I felt like an alien' |
| But the pieces didn't quite fit - until he watched a TV programme about autism. | But the pieces didn't quite fit - until he watched a TV programme about autism. |
| "The stereotyped view that I'd always had of autistic people was that they were either very severely disabled and unable to communicate, or formidable computer geeks. | "The stereotyped view that I'd always had of autistic people was that they were either very severely disabled and unable to communicate, or formidable computer geeks. |
| "But seeing people in the documentary who seemed perfectly normal getting diagnosed, and identifying with them in so many different ways, was a revelation." | "But seeing people in the documentary who seemed perfectly normal getting diagnosed, and identifying with them in so many different ways, was a revelation." |
| Robert felt "immense relief" following his diagnosis. | Robert felt "immense relief" following his diagnosis. |
| "Finally I had a name for the thing that had made me feel like an alien for so long. Finally I could stop feeling bad about being different." | "Finally I had a name for the thing that had made me feel like an alien for so long. Finally I could stop feeling bad about being different." |
| Barney and Robert are just two of an unknown number of older adults who have spent much of their lives not knowing why they feel different. | Barney and Robert are just two of an unknown number of older adults who have spent much of their lives not knowing why they feel different. |
| With autism first classified as a mental disorder in 1980, people born before then may have gone undiagnosed or been misdiagnosed. | With autism first classified as a mental disorder in 1980, people born before then may have gone undiagnosed or been misdiagnosed. |
| Around 700,000 people are thought to be autistic in the UK, and more are being diagnosed all the time, says Anna Bailey-Bearfield, policy and public affairs manager at the National Autistic Society. | Around 700,000 people are thought to be autistic in the UK, and more are being diagnosed all the time, says Anna Bailey-Bearfield, policy and public affairs manager at the National Autistic Society. |
| "Autism is often seen only to affect children but more autistic adults are now appearing on TV and people are starting to see themselves represented." | "Autism is often seen only to affect children but more autistic adults are now appearing on TV and people are starting to see themselves represented." |
| But the impact of not knowing for 40 or 50 years "can be very traumatic", she says, leaving people feeling anxious and socially isolated. | But the impact of not knowing for 40 or 50 years "can be very traumatic", she says, leaving people feeling anxious and socially isolated. |
| National guidance says people should wait no longer than 13 weeks, but 2019 NHS data showed a significant number waiting longer. | National guidance says people should wait no longer than 13 weeks, but 2019 NHS data showed a significant number waiting longer. |
| 'I couldn't move on with life' | 'I couldn't move on with life' |
| In Robert's case it took 18 months "of to-ing and fro-ing, anxious phone calls and plenty of disappointments". | In Robert's case it took 18 months "of to-ing and fro-ing, anxious phone calls and plenty of disappointments". |
| He finally went for a private assessment, which cost £1,900. "I just wanted it all done. I felt I couldn't move on with my life." | He finally went for a private assessment, which cost £1,900. "I just wanted it all done. I felt I couldn't move on with my life." |
| He remembers the day clearly - and answered questions for six hours. | He remembers the day clearly - and answered questions for six hours. |
| "Many of them had me searching for long-forgotten childhood memories - what textures did I like touching? Did I walk downstairs in a funny way?" | "Many of them had me searching for long-forgotten childhood memories - what textures did I like touching? Did I walk downstairs in a funny way?" |
| The result was a diagnosis of autism spectrum disorder. | The result was a diagnosis of autism spectrum disorder. |
| "It was nothing more specific than that - there is too much confusion about definitions, so many specialists now tend to refrain from using any," he says. | "It was nothing more specific than that - there is too much confusion about definitions, so many specialists now tend to refrain from using any," he says. |
| But the diagnosis of autism spectrum disorder later in life can be an overwhelmingly positive experience, research from Anglia Ruskin University suggests. | But the diagnosis of autism spectrum disorder later in life can be an overwhelmingly positive experience, research from Anglia Ruskin University suggests. |
| Dr Steven Stagg, who interviewed nine people over the age of 50, found it "allowed them to let go of impossible struggles and reframe their self-identity". | Dr Steven Stagg, who interviewed nine people over the age of 50, found it "allowed them to let go of impossible struggles and reframe their self-identity". |
| For one person it was "a sort of eureka moment - I realised it wasn't my fault". For another it was "the relief of knowing what's wrong, or what has been wrong". | For one person it was "a sort of eureka moment - I realised it wasn't my fault". For another it was "the relief of knowing what's wrong, or what has been wrong". |
| But there are often huge regrets too. | But there are often huge regrets too. |
| For Barney, who was interviewed for the study in Health Psychology and Behavioural Medicine, there is the realisation that those closest to him have suffered too. | For Barney, who was interviewed for the study in Health Psychology and Behavioural Medicine, there is the realisation that those closest to him have suffered too. |
| "If I think back I can't believe I was a teacher - not a very confident one, not able to communicate with people." | |
| And he says he realises now he had turned into a "stressy Dad", his health had deteriorated and relationships were strained. | |
| His diagnosis of Asperger's was a turning point. | His diagnosis of Asperger's was a turning point. |
| "Diagnosis has unlocked a totally different version of me," he says. | "Diagnosis has unlocked a totally different version of me," he says. |
| He describes the day he organised industrial action among fellow school teachers as a notable achievement, and there have been others too. | He describes the day he organised industrial action among fellow school teachers as a notable achievement, and there have been others too. |
| From struggling to make friends, he now has hundreds - and although communication can sometimes be strained, he is able to be up front about who he is. | From struggling to make friends, he now has hundreds - and although communication can sometimes be strained, he is able to be up front about who he is. |
| Speaking at events, organising festivals dedicated to specialist learning, writing, training and teaching about autism is now his focus. | Speaking at events, organising festivals dedicated to specialist learning, writing, training and teaching about autism is now his focus. |
| Barney can now talk about what makes him who he is. | Barney can now talk about what makes him who he is. |
| Fish and shirts | Fish and shirts |
| He loves the texture of raw fish, for example, and remembers always wanting to slice it for his mum. | He loves the texture of raw fish, for example, and remembers always wanting to slice it for his mum. |
| "I would spend all my time feeling the inside of it. | "I would spend all my time feeling the inside of it. |
| "Fish has a grain, so does chicken. Depending on the way you cut it, the feeling is different. I just loved that." | "Fish has a grain, so does chicken. Depending on the way you cut it, the feeling is different. I just loved that." |
| He also finds his shirts reassuring, and points to the "tiny herring-bone weave" of the one he's wearing. | He also finds his shirts reassuring, and points to the "tiny herring-bone weave" of the one he's wearing. |
| It's one of 25 he owns, all with small details he is fond of. Just knowing they are there makes him feel in control. | It's one of 25 he owns, all with small details he is fond of. Just knowing they are there makes him feel in control. |
| Robert is still getting used to his diagnosis and what it might mean for him - but he was delighted when one friend said she was "proud to have a neurodiverse friend". | Robert is still getting used to his diagnosis and what it might mean for him - but he was delighted when one friend said she was "proud to have a neurodiverse friend". |
| What is autism? | What is autism? |
| It affects how a person communicates with and relates to other people, and how they experience the world. | It affects how a person communicates with and relates to other people, and how they experience the world. |
| People with autism see, hear and feel the world differently to others. | People with autism see, hear and feel the world differently to others. |
| They can find it difficult to: | They can find it difficult to: |
| One person's condition can be very different to another's and require different levels of support. Some also have mental health problems and learning disabilities. | One person's condition can be very different to another's and require different levels of support. Some also have mental health problems and learning disabilities. |
| The National Autistic Society and NHS have information about exploring an autism diagnosis as an adult. | The National Autistic Society and NHS have information about exploring an autism diagnosis as an adult. |