Autistic endeavour: Steph Phillips turned campaigner

‘I am autistic. I don’t have autism – I don’t carry my autism around in a handbag,’ says Steph Phillips, with a laugh, as she explains her mission; to change the way physiotherapy and the wider world perceives and interacts with people with disabilities.

The CSP opposes ableism and other forms of discrimination and seeks to increase engagement with marginalised communities. Steph wants this to go further.

As a member of the CSP DisAbility network at the Annual Representative Conference in June, Steph called for the CSP to co-produce and embed a ‘neuro-affirming practice language model’ for neurodivergent physiotherapists and their patients for use in practice, education and the workplace.  A neuro-affirming language model is ‘not just about the words we use day-to-day ‘. ’It’s about reframing things – talking about strengths; differences rather than difficulties; thinking about the language we use when we write reports,’ Steph explains.

‘It’s thinking about patient experience – which is why the motion asked for a co-produced model because you have to have that lived experience and do that work together – not just this is what the CSP thinks as professionals. It would be a real step forward for the CSP and show we are a profession that is inclusive and will challenge discrimination.’

Steph’s autism remained undiagnosed throughout school, physiotherapy training at University College Hospital, in London, and in her 25 years as a physiotherapist.

’I didn’t get diagnosed until two years ago – just before my 50th birthday. Prior to that I had not recognised it in myself as a result of my stereotypical assumptions about how autism presents. They changed dramatically when one of my children was diagnosed as autistic about four years previously so I started thinking…maybe there are some similarities, is there a hereditary genetic component?’

She had an initial discussion with a private psychologist to see if it was worth getting a diagnosis and was referred onto the NHS pathway. To avoid a two-year plus wait, Steph paid for a private referral and was diagnosed as autistic.

Strengths

Steph focuses on her autistic strengths. ‘I am monotropic – I get very focused – but if I get distracted it can be quite difficult as it requires me to change direction. I can get so focused that I forget to eat or drink.’

’I can recall lots of facts and details. If I go somewhere I have never been before I would be able to navigate back without any problems. I have a strong work ethic. I pay great attention to detail. 

’I was always curious, always asking a lot of questions even at school because I do need clarity to ensure I am on the right track.’

Colleagues have picked up on these traits. ’It was always” Steph knows a lot about this go and see her”. I enjoy tasks that perhaps my neurotypical colleagues might not enjoy so much like policy writing,’ she laughs. 

Last minute changes or things that are not communicated clearly cause a lot of stress‘. 

Steph processes information by writing things down and uses a smart paper and pen as a workplace reasonable adjustment.

Steph wears noise-cancelling earbuds in restaurants and headphones when working at home. Lengthy online meetings can be tiring so Steph has the option of going off camera and using chat. 

So does Steph’s dedication and attention to detail, even unintentionally, lead to exploitation?  ’People could see my strengths and that would result in me being given more to do and me becoming stressed as I would have to manage competing demands.’

Discrimination

When I was going through diagnosis, I had colleagues who challenged me, asking why I was even considering it;” you have been a physio for all these years what’s your problem?”. This felt very undermining because it wasn’t a decision or journey I had taken lightly. It’s a process that requires a lot of reflection, and getting on the diagnostic pathway is also a challenge given long waiting times.

When some family members first heard of a diagnosis of autism, she says their first conception was of the stereotype ’savant ‘portrayed by Dustin Hoffman in the film Rainman. So, Steph goes out of her way to challenge stereotypical assumptions of autism such as being good at maths or science, disengaged, emotionless. ’I am no good at maths. People say” oh you are autistic. 

How can you do this job? Autistic people aren’t empathetic.” I tell them I am hyper-empathetic. Or “you can make eye contact”. Yes, I can make eye contact but I have had to learn it and it is really hard work but that is not to say I am not listening.’ 

Steph’s late diagnosis is all too common amongst women, with the diagnostic tests and the tools all designed around men.

’We don’t have enough evidence about “late discovered” autistic females. When we talk about late discovered, I was very late, but teenage girls would be classed as late discovered because in the most part boys are diagnosed in their toddlerhood – girls go under the radar.’

Steph is full of praise for the support she received from psychotherapist Catherine Asta, who is late diagnosed herself, and is championing the cause of late discovered autistic women and marginalised genders and is publishing a book next year which will hear testimonies from late discovered women. 

Co-production 

Steph works as co-production and engagement lead for Central Bedfordshire Council working across education, health and care at a strategic and operational level.

In spite of the fact that it is enshrined in a raft of legislation Steph feels there is still a long way to go to embed co-production across the UK. 

’Co-production practice should be embedded at an individual, operational and strategic levels – it is about working in equal partnership with service users and valuing their lived experience as the experts – there’s no” them and us”.’

Reflecting on Disability History Month (14 November - 20 December) Steph says recent legislation has been positive. The Autism Act introduced in 2009 placed a legal duty on the UK government to have an autism strategy and statutory guidance for local authorities and the NHS.

All Care Quality commissioned registered organisations now have a statutory duty for their staff to undertake the Oliver McGowan Mandatory Training on Learning Disabilities and Autism, which was co-produced with experts by experience.  ’That is a big change for the NHS but from personal experience I don’t always see that impact.’

Steph says the CSP DisAbility Network has worked with the Association of Chartered Physiotherapists in Occupational Health and Ergonomics to develop and deliver training on reasonable adjustments in the workplace. 

She says members seeking support should speak to their workplace reps. 

And she recommends the charity Autistica as a great resource for employers who want to make the workplace accessible.

She also implores managers, and service leads to understand their duties around the Equality Act 2010, to be aware of how the NHS supports disabled staff in the workplace, and what the government Access to Work scheme can offer in terms of support for disabled people and those with health conditions. 

’Office for National Statistics data from 2020 shows just 22 per cent of autistic adults are in any kind of employment – that’s the challenge. With the right support and understanding in place the workplace can be inclusive.’