Viewpoint: Breaking down barriers to healthcare for people on the autism spectrum

There are over 50,000 people in Scotland with autism so it's likely that every practice will have several children and adults with autism on their patient register. The National Autistic Society Scotland and Dr John Gillies, RCGP Scotland chairman, advise GPs on recognising the signs of autism, and ensuring that people with the condition have access to timely and appropriate healthcare.

Dr Gillies: '80% of GPs want more training in autism, and diagnosis rates are increasing as the condition becomes more widely recognised'
Dr Gillies: '80% of GPs want more training in autism, and diagnosis rates are increasing as the condition becomes more widely recognised'

At present, an estimated 50,000 Scottish people – that’s 1 in every 100 – are on the autism spectrum. The condition is more common than many might think. If your patient register is 2000, this means you can realistically expect that up to 20 patients will have autism. Identifying patients who may have autism and ensuring that they can access the same standard of care as non-disabled patients is essential, but it can present particular challenges to GPs.

Autism is not a learning difficulty, nor is it a mental illness. At present, however, autism is often misdiagnosed as these conditions, with catastrophic results and expensive, unnecessary and ineffective treatment. At least one in three adults with autism experience severe mental health difficulties due to a lack of support and incorrect diagnosis. People with autism rarely start out with mental health problems, but these can develop when autism is confused with other conditions.

There is widespread willingness among Scotland’s GPs to identify and support individuals with autism. Research by the National Audit Office shows that 80% of GPs want more training in autism, and diagnosis rates are increasing as the condition becomes more widely recognised. But still, only a fraction of those affected have a formal diagnosis. Of the 50,000 Scottish people with autism, only 7,500 are known to local authorities.

More GPs in Scotland can encourage patient diagnosis. By recognising the clinical features, a GP can play a crucial role in the health and wellbeing of patients with autism. But GPs must be alert to a wide range of indicators.  

Individuals who are considered to be on the autism spectrum are in many ways very different from each other. The range of intellectual ability found in people with autism extends from those who have a severe learning disability right up to individuals who display superior levels of intellect. Similarly, linguistic skills range from those who are mute to those who display complex, grammatically correct speech. All such individuals have difficulties in three main areas. Different authors have used slightly different terminology to describe this cluster of symptoms, but the concept of the 'triad of impairments' is widely used.

The first in the triad is impairment of social interaction. This refers to an impaired ability to engage in reciprocal social interactions. The most severely affected individuals seem aloof and uninterested in people. Others desire contact, but fail to understand the reciprocal nature of normal social interaction. Consequently, their attempts at social interaction are clumsy, awkward and one-sided. Some individuals passively accept the attentions of others but do not reciprocate.

The second feature is impairment of social communication. The entire range of communicative skills may be affected. A significant proportion of individuals with classic autism fail to develop useful speech. Even when the mechanics of language are mastered, the person with autism has difficulty using it for the purpose of communicating with others. Intonation is inclined to be abnormal and the non-verbal aspects of communication such as eye-to-eye gaze and the use and understanding of gesture and facial expression can be impaired.

The final part of the triad is inflexibility of behaviour and thought. People with autism can have great difficulty adapting to change and display a strong desire for routine and predictability.

Not everyone who shows the signs of autism may desire a diagnosis, but autism is a recognised disability, and is described in both the ICD-10 and DSM-4 international classification systems. If someone meets the criteria, he or she should have the opportunity to be diagnosed.

A sensitively handled diagnosis enables individuals to make sense of their history, which is often marked by difficult experiences and misunderstanding by others. It can help the patient understand themselves better and to make necessary adjustments for their future, and it can help families, friends, partners and carers to better understand and cope with the individual's needs and behaviour.

Diagnosis can be the first important step in supporting the patient to locate local support and social skills groups, and obtain more appropriate support from employers, social and housing services, benefit agencies, colleges and other organisations. If your patient wishes to be assessed, it may be worthwhile discussing their case with your local mental health or learning disability services with responsibility for autism.

People on the autism spectrum can feel particularly uncomfortable about the unknown. It can, therefore, be helpful to provide new patients with information about the surgery in advance of an appointment. You might create an ‘About the Surgery’ leaflet – using pictures and photographs taken in your surgery – to offer information about the surgery layout, waiting rooms, consultation and treatment rooms and the surgery staff a new patient is likely to encounter.

Many people with autism experience difficulties relating to the sensory environment. It is helpful for receptionists to be aware of this and to be flexible and understanding in their approach. If you have the space, you could provide a separate quiet waiting area where people with additional support needs may wait. If even this is too much for them, a special arrangement could be considered which allows the person to wait elsewhere, such as in their car, and the receptionist call them when they can be seen. It is also sensible to offer appointments to such patients at quiet times of the day, unless urgent attention is required.

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