Potential Barriers to accessing Health care for autistic people – Silva Care article

Accessing a GP surgery can be an incredibly stressful experience for people with autism and their family members and carers supporting them. Research studies are estimating premature mortality to be up to 10-times higher amongst autistic people compared to the neurotypical population [Hirvikoski ar al 2016].  One of the reasons for the higher rate has been attributed to difficult and traumatic experiences when visiting surgeries, leading to the person not going back for treatment, and missing out on potential early detection, diagnosis and intervention. Difficulties may include:

Making an appointment

It can be very difficult for an autistic person to make an appointment [Dern and Sappok 2016].  Communication difficulties, speaking to a stranger, or generally using a phone can be a barrier to making appointments.

Helpful tips- having a flagging system in place so that receptionists can easily recognise a caller with autism, and allow time to communicate, or preferably have an autism champion within the practice.

TXT and email appointments can also help.

Fear of the unexpected – Breaking routine to visit a GP is likely to cause high levels of anxiety, combined with not knowing or understanding what a GP will do. Unstructured time in a waiting room, filled with strangers, noise such as children crying, mobile phones etc. will further heighten anxiety. As many people with autism also have sensory processing disorder, the noise levels, lighting, fluorescent lighting for example, smells such as perfumes worn by patients can lead to sensory overload, distraction and even pain.

Helpful Tips

Staff having an awareness of sensory processing difficulties.

Allowing the person to visit prior to needing an appointment in order to familiarise with the surroundings.

Giving the person the first appointment of the day to avoid long waiting times.

Avoiding times which are particularly noisy such as baby clinics.

Where possible, providing a quieter space for the person to sit, or having a system which enables them to remain in their car until the appointment.

The consultation.

It is likely that the person will arrive in the consultation room in a distracted, anxious or distressed state, particularly if they have had a long wait.  They may be  hyper-sensitive to touch, making an examination difficult. Alternatively, if they are hypo-sensitive they may have a high threshold to pain or temperature and may not appear in pain when examined, or have unusual responses to pain such as laughing, or humming. Equipment used by GP’s may also cause discomfort such as paper sheets on examination tables. It has been found that pen lights can trigger seizures in people with epilepsy [20-30% on the autistic spectrum ] [kagen- Kushnir, Robert Snead, 2005].

Helpful tips- where possible it can be useful to book a double appointment to allow time for the person to settle, the GP to explain what is going to happen, and to help overcome communication barriers. Consideration given to equipment which may be causing sensory processing difficulties and if they can be avoided, or alternatives used.

References

Hirvikoski, T.et al [2016] “ premature mortality in autism spectrum disorder. British Journal of Psychiatry march 2016, 208 [3] 232-238

Dern, S, and Sappok, T. “ Barriers to Health care for people on the autistic spectrum “. January 2016

 Kagan-Kushnir, T, Wendy Roberts,S and, Carter,S [2005] Screening Electroencephalograms in Autism Spectrum Disorders: Evidence-Based Guideline, Journal of Child Neurology march 2005.