For 70 years, Gordon Cairns had struggled to understand why he didn’t fit in.
But after a prostate cancer diagnosis and difficulties with his mental health, he ended up seeing the same Mental Health Nurse three times in three years.
On his fourth visit, the nurse brought up something that led to Gordon making sense of many of the things he had faced throughout his life.
The nurse asked him to take an AQ10 autism test, which showed he was eligible for an assessment. Five months later, he was told he is autistic.
For some adults, they have spent years living with issues which exist because they are autistic but they have no idea that is the cause.
Gordon explains: ‘When I started school aged five in 1951, autism was not on the agenda.
‘You were treated as being a naughty child and that went on all through my school days. I ended up with no qualifications.
‘I was bullied for not joining in at playtimes and on the way to and from school.
‘After leaving school, there was bullying at work. I was the one who got all the worst jobs.
‘I didn’t have many friends and didn’t join in after work activities. I had so many jobs as I was always the first to go.
‘I got known as a soft touch after retirement and I got a lot of money taken from me by so called friends with sob stories and people saying they would pay me back. I think all of that is definitely due to my undiagnosed autism.’
Now, if a child shows signs they could be autistic, it can be spotted by health visitors or at school, but adults often need to be advocates for themselves and explain to doctors why they need to be referred.
Although in Gordon’s case, autism was suggested by a health professional, many others come up with the possibility themselves and then have to fight for an official diagnosis.
For Jennifer (not her real name) building up the courage to see a GP and ask to be referred to an autism specialist at 24 was difficult.
She explains: ‘I did lots of research, found examples from my own experiences and went in and explained it all. The GP really wasn’t willing to listen and told me it wouldn’t make that much difference.
‘I think because I had been living for so long without a diagnosis – I had a degree, and a job and friends – the doctor seemed to suggest I was overexaggerating.
‘I felt it was something I really needed so I saved money and paid £1500 for a private assessment. I spoke to a psychologist for several hours and they agreed that I did have autism.
‘I was then able to take that back to my GP.’
Arran Linton-Smith, was diagnosed as autistic when he was 54. Like Jennifer, he felt that getting a referral meant he really had to ‘push his case’ with his GP.
He explains: ‘It all happened around 2012 when Radio 4 iPM were running a life changing programme called ‘Take a leap for PM’.
‘There were lots of pieces of the jigsaw which were coming together surrounding my autism and following my son’s suggestion, I had already undertaken the Cambridge University on-line AQ test which also suggested that I could well be autistic. I was more than ready at that stage to accept a full autism diagnosis.
‘All through my life I was aware that there was something significantly different about myself, but I was unable to put my finger on it.
‘I had a history of being referred to clinical psychologists on different occasions and I had also done lots of research myself into what was making my mind tick differently, but each time I did this, I was clearly reading the wrong workshop manual for my mind.
‘I went to the GP and it wasn’t just a case of going in there and saying I wanted an autism assessment, I really had to put together a good case to explain why.’
Getting a referral for an autism assessment is just the start of a lengthy process.
For both adults and children awaiting an autism assessment, the average wait time is far beyond the NHS target of three months.
In the quarter, starting on 1 April this year, the average wait time between referral and diagnosis for someone under 18 was 361 days.
For someone in the 18-24 age group, it was less at 203 days, but still far beyond the government target. The average wait time for someone 65 and over was 502 days.
Some choose to pay privately for an assessment, while others are able to explore other avenues.
Veronika Pudilova, known as Vera, has been aware of autism from a very young age but because of the way it had been portrayed, she didn’t think it would apply to her.
She explains: ‘Because of the language surrounding it, and the way that it was portrayed in the media, I felt like it was only for young boys and it was a disease. That’s how it was framed. I didn’t really want to investigate that any further.
‘Then as an adult, I realised that there’s still some issues I’m struggling with that don’t fit in the mental health umbrella. I felt there was something underlying. I met an autistic adult who had a job and children and a dog and I realised that the portrayal was wrong and I did fit some aspects of being autistic.’
Vera went to her doctor but as she was a studen, she was told to speak to her university at the same time, which meant she was able to get a diagnosis much quicker.
She explains: ‘The university paid £400 and I paid £100 and it only took six months. I was diagnosed in July last year.’
Once autistic adults do finally get diagnosed, there is very limited support available.
Dr James Cusack, Chief Executive at Autistica, the UK’s autism research charity explains: ‘There are many more autistic adults in the UK than children but adults are often overlooked when it comes to research and services.
‘Autistic adults are more likely than others to face a number of mental and physical health problems, as well challenges with daily life and employment, so can really benefit from tailored support.
‘That’s why we’re working with the University of Newcastle, University College, and the NHS to improve diagnosis and support for adults. Research like this is essential to ensure that every autistic adult can look forward to a long, happy, healthy life.’
For Jennifer, after she presented her diagnosis to her GP, it was noted on her medical file but that was it.
Charities helping autistic adults
Ambitious About Autism
It works to support children and young people with autism by running specialist education services, an employment programme, doing policy work and campaigning. It also delivers training and consultancy to a wide range of organisations to improve awareness and understanding of autism.
The UK’s national autism research charity, which focuses on giving autistic people the opportunity to live long, happy, healthy lives. It funds research, shapes policy and works with autistic people to understand their needs.
National Autistic Society
The NAS supports autistic people across the UK, running specialist schools, campaigning for improved rights and training companies on being more autism-friendly. They run a helpline on 0808 800 4104, which provides impartial, confidential information along with advice for autistic people, their families, friends and carers.
She said: ‘I thought after the diagnosis, that it would open up a whole lot of support to me but there was nothing offered through my GP.
‘It was only through my own research that I found charities and support groups who could help me as an autistic adult.
‘I feel like because I had been living ‘fine’ for so long, my doctor just assumed I didn’t need any help but the whole reason I had fought for a diagnosis was because I really did.’
Arran adds: ‘In terms of support, there was none, other than the support that I sought from the NAS Helpline and eventually I did get some informal spiritual counselling from a vicar friend that I knew, which greatly helped both me and my wife.’
Even though Vera was diagnosed through her university, she found even the support from them was difficult to get.
She didn’t get support from her university disability services, found that the person who specialised in autism support was on leave and eventually found help through study mentoring for learning difficulties.
She adds: ‘I had to really fight for that but it was so helpful.
‘My whole diagnosis opened up a whole world to me. At the start, it was really lonely, because I didn’t know that there was any support out there and I didn’t know what it meant to me.
‘I was happy that I finally knew what was going on. I was so lucky that I had that one person who I knew who was an autistic adult tell me that it’s something to be proud of, because we’re not different. It’s not a disease. It’s just a different way of being.
‘The way I got support was through being very open about my diagnosis and presenting it in a positive light. So through that, I found that five of my peers in my youth group are also autistic.’
She has created an Instagram account @happy_nd_lady, where she posts drawings explaining her experience of being an autistic adult, which has also helped her connect with others.
For Vera, Jennifer, Arran and Gordon, being diagnosed earlier in life could have greatly helped them deal with some of the things they were struggling with.
Arran said: ‘I don’t think there is enough being done to help autistic adults but I suspect that there is a bit of a postcode lottery with regards to this.
‘From my experience, there are key pieces of information which would help us re-build our lives.
‘It is a massive shock to receive a diagnosis as it completely changes your own personal identity.’
Vera adds: ‘Being diagnosed earlier would have really helped me understand myself better. Mental health wouldn’t have been such an issue, particularly in my teen years.
‘So many of the methods that were recommend just didn’t work for me. Cognitive behavioural therapy did not work and when I did mindfulness, it made my sensory sensitivity worse and I would be more anxious.
‘I do think that I was able to come into it with a very positive light.
‘I was able to get a diagnosis from a professional who wrote everything about my diagnosis in a very positive light, whereas the children and other young people often have a very negative diagnosis, talking about things they will never be able to do.
‘If they had done it for me, at a young age, I would have had the same language and that might have been detrimental whereas now I just say “Here’s some things I struggle with. Here’s some things I’m really good at. What does everyone else think? And through that lots of other people have found out things about themselves, too.”’
Jennifer adds: ‘Being diagnosed was a huge turning point in my life and I do wish I’d had the support earlier in life. I went through university, I’ve held down jobs and I’ve done well despite having points where it felt impossible and not know why. I do often wonder what it would be like if I’d been diagnosed earlier but I will never know that, and I’m just glad that now I know.’
An NHS spokesperson said: ‘Published data on waiting times is helping to guide how local NHS services work with councils to improve access to support for people with autism and the NHS has already introduced new health checks to ensure people with autism are getting the additional care they might need.’
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