Autistic adults discover acceptance in Penrith charity's groups

All About Autism (AAA), based in Penrith, launched its post-diagnosis course two years ago, focussing on adults who have recently been formally diagnosed and are seeking further understanding about it.

Susan Prior, operations manager at AAA and who is diagnosed with ADHD, said the groups and services it offers give autistic people community, thus understanding and belonging.

A correlation between autism and mental illness is present but it’s mostly due to a feeling of ostracisation, as AAA member Emma Thompson, who is autistic, explained.

A 2017 study published by Cambridge University Press indicated that 27 per cent of autistic people live with diagnosed anxiety and 23 per cent with diagnosed depressive disorders.

Another 2017 study on autistic people’s experience with mental health and autism acceptance reported that feeling accepted as one’s autistic self by friends and family is ‘more important for self-acceptance than feeling accepted by society’.

Written by Eilidh Cage, Jessica Di Monaco, and Victoria Newell, it explained that as personal and external acceptance increases, depression decreases.

But on societal acceptance, it surveyed autistic adults, asking them if society accepted them as autistic – 43 per cent said no, 48 per cent said sometimes, and just seven per cent said yes.

Ms Thompson was diagnosed in Leicester several years ago and said after her diagnosis she was handed ‘a stack of paper’ listing places to go to, over 50 per cent of which were for children, and the rest that wouldn’t be helpful, and particularly nothing for autistic women, who generally experience autism differently to men.

“I run the women's group and I also run a mixed group, and the conversations that we have often are very similar because we are adults and we dealt with similar issues.

“But with the women's group, I tend to find that we take things very, very personally.

“We tend to blame ourselves a lot.”

But she found AAA a positive sanctuary on her evolution towards understanding herself and finding ways to ‘be useful’, including by working at AAA.

“I’m now part-time self-employed, and on universal credit, and I can’t really work even 20 hours a week, so whatever I do going forward has to fit into this new version of me that bears no resemblance to the previous version of me,” Ms Thompson said, explaining that prior she worked full time but experienced a major burnout and sought a diagnosis.

“Prior to my burnout, I was working as a manager.

“I was working upwards of 40 hours a week.

“I was very busy, and very active.

“I was in communities talking to people all the time and on good money.

“So for me, the shift in that sort of five-year period has been quite a dramatic shift in my life, and in the beginning, for the first two or three years, I didn't have any support.

“I got my diagnosis and then like, bye, see you later, have fun, and that was it.”

But now she’s in a better place and it’s all down to accepting herself, thanks to the group, she said.

She also explained that sharing experiences with other people led to a feeling of validation, which benefitted her mental health.

This was echoed by Neil Chirnside, from Penrith, who was diagnosed in March last year, and has found the group to be invaluably helpful.

“Back in January, I had three weeks off work.

“I had a massive autistic meltdown, I worked like a pillock for the last five months of last year, and didn't see the bloody great big flashing sign saying, don't do this, don't do this, you need a rest,” he explained, adding that during this three months off he met Ms Thompson.

“I was in an awful place because I didn't recognise the signposts, and at my company, the people that I worked with, even though they knew I was autistic, they didn't recognise how to support me.

“Now, that's changing where I work, and I'm really excited to be part of the facilitation that anybody else who's autistic within our group of companies is going to get some support.

“Yes, I've had to go through the pain, but we can help other people, and that's, that's why we're here because we can help others to thrive, to be more fulfilled, to go, ‘I am enough’.

“I don't have to have 20 degrees and earn £20million a year to be enough as a human being.

“I'm enough as me, but I spent 50 years not being there,” he said.

More than 15,000 patients are waiting months for an autism diagnosis in the Northeast and north Cumbria, with average wait times skyrocketing nationally.

There has been a recent rise in people seeking diagnoses due to increased awareness of autism, but it’s being met with an out of date health system that lacks funding, as Ms Thompson explained funding is a big issue.

Ms Prior said a rework of diagnosis parameters should be made, where it currently needs to meet criteria based on how it impacts life negatively, she argued it doesn’t need to be a negative force in order for it to be diagnosed.

Furthermore, a better understanding among medical professionals when diagnosing autistic people and delivering support services or referrals to charities like AAA, would help, Ms Prior said, but added that things are getting better.

On working to progress understanding of autism and self-diagnosis while having to only accept people with formal diagnoses due to their NHS-derived funding, and on if they want to move towards a system where self-diagnosed people are accepted so as not to necessitate going through the arduous NHS process, Ms Prior said: “If our organisation is fundamentally geared towards providing the conditions in which autistic people can thrive and be mentally healthy, then how could we say you have to have been through this medical diagnosis?”

Paul Wilson, clinical manager at Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (CNTW) said on the benefits of a formal diagnosis: “There are numerous benefits to having a formal NHS diagnosis.

"It can help in providing the correct approach and support to manage symptoms and can be beneficial for family, friends, and colleagues to understand a person’s difficulties and develop coping strategies.

“Having a formal diagnosis means a person is entitled to reasonable adjustments in work and education under the Disability Equality Act.

"It also helps them access services and benefits such as placement support and housing.

“It can provide validation for many people.

"They are able to make sense of their life experiences and identify with others.”

A spokesperson from NHS England said on the importance of getting a formal diagnosis from them that a ‘timely autism diagnosis can play a vital role in people’s lives’.

Last year, NHS England published its ‘All-Age Autism Assessment Framework and Operational Guidance’ to help support this process.

In it, it’s explained that the NHS derives its autism diagnosis criteria from the International Statistical Classification of Diseases (ICD), which it said is ‘the only assessment manual that officially applies in the NHS in England, and is a global assessment standard.

For the NHS to diagnose someone as autistic, each criteria, of which there are four, must be met.

The criteria are that there must be ‘persisten deficits’ in ‘initiating and sustaining social communication and reciprocal social interactions’ outside the ‘expected range of typical functioning’ for their age and intellect.

There must also be ‘persistent, restricted, repetitive, and inflexible patterns’ of behaviour that are ‘clearly atypical or excessive’ for their context.

A common term used in autistic circles is ‘hyperfixation’, which could describe this, in brief, is something which someone is intensely interested in, or obsessed with, beyond what someone is typically expected to be interested in, which goes beyond typical demonstrations of fandom – it may be the one thing that said person is interested in or devotes their free time towards.

On adult diagnoses, the criteria state that the onset of autism must occur in childhood, but does add that ‘characteristic symptoms’, or traits, may not fully manifest until later ‘when social demands exceed limited capacities’.

Furthermore, it states that said traits must cause ‘significant impairment in personal, family, social, educational, occupational, or other important areas of functioning’.

A spokesperson from NHS England said: “If a person feels like they may wish to have an autism assessment, there is NHS information about potential signs of autism and advice about how to ask for an assessment.”

For more information from the NHS about potential signs, click here, and for their advice on assessments, click here.

For more information about AAA, click here.