Closing the health inequality gap for patients with autism | Medical Negligence and Personal Injury Blog | Kingsley Napley

In celebration of Neurodiversity Week, we are pleased to share a series of blogs highlighting some of the issues faced by neurodivergent individuals. In doing so, we also hope to shine a spotlight on the specialist advice, support and representation which we offer to our neurodivergent clients.

(You can read an introduction to this special series, which explains in detail some of the terminology we have used)

Within a healthcare environment studies have shown that there is significant health inequality for patients with autism, who have poorer access to healthcare and a disparity in receiving the appropriate services. As a result of unmet healthcare needs those with autism tend to have poorer health leading to a lower health related quality of life and an increased risk of mortality. 

 There are multi-factorial barriers for autistic people seeking access to healthcare.

• A study found that 80% of autistic respondents experienced difficulty visiting the GP, for reasons including not wanting to use the telephone to make an appointment, not feeling understood within consultations, difficulty communicating with healthcare professionals, sensory overload and also organisational issues. 
• Autistic individuals also often struggle to decide whether their symptoms warrant a GP visit.
• Experiences and communication of pain levels can also be an obstacle, with autistic individuals less likely to be able to describe their symptoms, how strong their pain is and explain their symptoms.  

Adverse health outcomes are associated with these barriers to healthcare, namely, untreated physical and mental conditions, failing to attend specialist referrals, delay in presentation and treatment leading to more extensive and invasive treatment or surgery of potentially life threatening conditions.

Autistic patients also often have co-morbidities that are associated with their diagnosis such as: ADD; ADHD; IBS; Fibromyalgia; Chronic Fatigue Syndrome: Hypermobility Syndrome; Ehlers Danlos Syndrome; poor muscle strength; Dyspraxia; Anorexia; Irlen Sydrome; Bipolar Disorder. It is also reported that 80% of autistic adults have a mental health condition.

As a consequence of the various barriers to healthcare, life expectancy is reported to be reduced by 16-30 years across the autistic population.

This stark figure represents a pressing need for healthcare providers to make necessary adjustments for their autistic patients by making efforts to understand needs and sensitivities.

The unfamiliar sensory environment of a GP practice or hospital can cause severe anxiety, discomfort and distress for those with autism due to the lights, colours, smells, sounds and temperature. The need to attend an appointment also takes the individual out of their stable routine. This may lead to the person experiencing a shutdown if they become overwhelmed and experience too many stressors.  To self-regulate the individual may stim which may involve tics, rocking, humming.

In order to accommodate autistic patients and reduce the healthcare inequality, appropriate adjustments include:

• enabling alternative ways to arrange appointments such as text, online form or email;
• creating quiet waiting areas;
• longer consultation times to accommodate communication needs;
• enabling autistic patients to submit information prior to the consultation;
• developing sensory friendly health environments and providing visual aids and instructions.

Certain NHS Trusts are also implementing autism passports to facilitate communication between patient and other healthcare professionals.

Communication skills training for professionals is also required with only 25% primary healthcare providers reported high confidence in communicating with autistic adult patients or making necessary accommodations and only 40% of GPs reporting specific autism training. 

The use of patient advocates is also an important tool to bridge any communication gap and enable the patient to feel more comfortable in the environment.

Such steps will enable autistic patients to engage further with preventative healthcare services and achieve greater equality in access and provision of quality healthcare.