Our Autism in the NHS: 70 Years On

On the auspicious year of its 70th anniversary, the NHS can rightly hold its head high for the strides made since its founding and evolution since then — from ‘test tube babies’ to heart transplants, to describe it as revolutionary will always be rightly justified. Yet, for the conditions which cannot easily be addressed with a scalpel alone or through bed rest in hospital, the picture is somewhat murkier. With regards to autism in this instance, there is no doubt that the situation is on shaky ground. Only recently, the road to diagnosis alone, whether as a child or an adult, can take up to 3–4 years depending largely on the service which falls in your own postcode.

While as a child, diagnosis was nothing more to me than an arduous blip at the start, but in the years after would only affirm my need for a support structure in school (made tougher without a Statement of SEN, as it was formerly known). Furthermore, being autistic came to influence everything I would be judged around social skills, other emerging conditions (hypermobility for me!) and future progression. Diagnosis is ultimately the start of finding answers to questions we had never imagined before. For adults, especially women, facing those questions later on in life can only give some relief from having in some way known the answers before, but only validated once the system finally catches up. Professionals have never been better able to identify an autism diagnosis than years before, but the strain of doing so has rapidly taken its toll.

As a member of NHS England’s Learning Disability and Autism Advisory Group, a select number of us last year provided a review of where its faults lie from diagnosis right up to the iniquity of ‘fake cures’. I truly believe there are many of its staff, clinical or operational, who recognise that standards are below where they should be meeting and patients/families have lost faith, where it is now the duty of NHS services to again restore.

For the purposes of economy in blog length, I have selected three themes where I and other autistic people feel about what we need to correct in order for an NHS that autistic people and our families can have confidence in.

Contributions in this blog come from autistic insights, with Fern Adams and Sarah Douglas, who share experiences from their own viewpoints.

1. Environment

If it is the stench of the antiseptic steriliser that pervades in probably every hospital, being overpowered by the fluorescent lighting which can feel inescapable or just the dizzying number of corridors to wade our way through, the NHS can hardly be thought of as a ‘home from home’. A report by the Westminster Autism Commission in 2016 on healthcare documented the anxieties that can be felt when it comes to sensory processing, where the barriers to simply communicate those fears are unresolved to a stage where autistic patients might simply not return and, consequentially, marks a further decline in our wellbeing.

For me, a visit to the GP surgery felt to be an uphill battle upon entry itself. Whether that be the frustration of trying to secure an appointment over the phone or having to accept the professional that you’ll be allocated is a complete stranger does not provide much assurance about personalisation of the service. Also, innovations such as a ‘GP at Hand’ through smartphones might be of real benefit to those who may be unable to leave their home or feel distressed from being in GP surgeries, but this still has many flaws which are both financial and system-related to really see this as a lasting solution.

· Fern

The NHS environment is not really set up in a way that helps autistic people. Hospitals and waiting rooms are often noisy, brightly lit and busy places. It can be unclear what is happening or why and you also have to deal with feeling unwell on top of what would already be a difficult situation. As a result it’s very easy to become anxious and experience sensory overload which doesn’t help with then trying to communicate effectively with medical professionals.

· Sarah

The signposts at the hospital were clear, which enabled me to confidently arrive well in time for the appt. The pre-explained check-in details were clear too and there was also a receptionist if I needed help. The layout of the waiting room also gave me an opportunity to sit in a place where I felt safe and relaxed before the appt. I prefer a corner seat, away from crowds, in a more open space and with more natural light.

2. Staff and Relations with Professionals

If there is any entrenched rift among autistic people and our greatest bugbear in the health service is the misunderstanding and disconnect felt around the staff we come into contact with. Undeniably, there are many professionals from all manner of clinical expertise who are committed and skilled in how they might support an autistic patient, including a dedicated champion representing the Royal College of Psychiatrists. However, and drawing on the experiences of individuals that have received mental health services, there are obvious tensions which have become particularly fragile.

When I asked fellow autistic people who were active on Twitter what their thoughts were, as part of a presentation I was to give in the coming weeks at the Royal College of Physicians, and this was what they had to say:

It is hard to argue against the fact that clinical effectiveness and confidence be felt among autistic people are not in a good place in this anniversary year. From research findings in the ‘Know Your Normal’ report, autistic respondents aged 16–25 recorded only 14% of feeling ‘very’ or ‘extremely’ comfortable in confiding about their mental health to a clinician. Without full training into autism support, paired alongside learning disabilities (GPs being imperative in this, according to research), the risk of creating further preventable losses in the system remains all too present. Tragically, it was exemplified in cases like that of Oliver McGowan*, where the disregard by professionals managing his care set in motion the circumstances that led to his death.

· Fern

Communicating with people can often be difficult. Throw in not feeling well and a busy sensory environment and it can feel like an impossible task. Furthermore many tools used in the NHS can be difficult if you’re autistic. Take for example the pain chart; you are often asked to score your pain on a scale of one to ten for how severe it is. For me this is extremely difficult as I cannot equate pain to numbers and as pain is individual no one can tell you what number of pain you are experiencing so you can learn the pain scale with your own pain levels.

· Sarah

[On a service which was visited]

The staff were friendly and helpful at reception and in the monitor fitting room.

*You can sign an online petition created by Oliver’s mother, Paula, calling on mandatory training for all healthcare professionals here.

3. What Needs to Change

As with any system-wide change, the scale and complexity does not allow for any clear cut or single solution approach to better healthcare for autistic people. Crucially it is not just about standards, but also building hope and confidence in the services we are reliant upon. Following the publication of the Learning Disabilities Mortality Review (LeDeR), National Learning Disability Director for NHS England, Ray James remarked how “too many families lack confidence in what is being done locally and nationally.” However, and while there is some effort to see this reformed, autism largely sits under the encompassing shadow of learning disabilities and consequentially, there is a likely conflation on how the needs in both categories may easily be judged as homogeneous. Though it is true a significant number might share a co-occurring diagnosis on both of these grounds, the strategy and provision of care also has to be distinct in some areas.

For example, oversensitivity to light and level of anxiety that might manifest on visiting a surgery or a hospital can be linked to an issue that is common among many autistic people and has to be prioritised as such. Agencies such as Access Social can help people become familiar with these facilities from their own home and before any appointment through visual mapping. As to the lighting and din inside health services, perhaps some inspiration can be taken from ‘Autism Hour’ that has been expanding in the retail world. Reasonable adjustments do not have to be so convoluted to find a practical and impactful solution, but the real difficulty lies in the culture of the institution and seeing that universal training, provided in some form by autistic people, and diagnostic assessments (amongst others) are addressed urgently.

In how the NHS have communicated also, there are some patent gaps in knowledge and misunderstanding that have led to bloopers, such as their misguided promotion of Autism Speaks (which to their credit was soon deleted after the objections raised):

On its 70th year, there is still much to praise and feel thankful in having the NHS, but it must also be treated as an opportunity for self-reflection and how persisting faults can be put right again to rebuild. The choices now contextualise the service’s future and how they must rebalance inequality amongst some of the most vulnerable patients. Given time, perhaps we can ensure real change is achieved, but that takes courage and cannot be done simply with continuous empty strategies without any clout or guidelines that exist for the purpose of gathering dust on shelves. Question is can the challenge now be met?

· Fern

For staff to have some basic autism awareness training and understanding would help the experience of using NHS services enormously. Things as simple as introducing yourself, stating very clearly what is happening, what might happen and why it is happening, realising that people may have different methods of communication ( and letting them use these), that people experience and show pain differently and just allowing time can really help. These adjustments also have the benefit of not just helping autistic people but would have a positive impact for everyone too.

· Sarah

None of this was asked for in the fitting room and the section that I could tick for ASD and how it affects me was lumped in under the heading of learning difficulties and mental health conditions, which annoyed me. The information I had written about autism and how it may affect me in the clinical environment was thus a total waste of time and felt like an exercise in box ticking. So, a mixed experience where I was dealt with efficiently, but not personally.

If you’re interested in supporting the work at NHS England to increase the voices of autistic people and those with learning disabilities, read about the Forum which it runs here.