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Supporting autistic patients

Supporting autistic patients

Experts Dr Sarah Michaels, Dr Molly Moffat and Dr Sebastian Shaw share the latest understanding of autism, including the co-occurring conditions and challenges autistic people often experience, and how GPs and their practices can improve the ways they support patients under their care

Key points

  • Autistic people are a vulnerable patient group. Despite their heterogeneity they share commonalities that make their needs different to those of the neuro-majority.
  • They are at higher risk of more adverse outcomes than non-autistic people, with early mortality from conditions affecting all systems, alongside alarmingly high rates of suicide and abuse.
  • Autistic people experience difficulty in making and attending GP appointments. Barriers include communication differences, sensory needs and not feeling believed.
  • GPs and practices can take simple measures to be more autism-friendly, including having sensory-friendly spaces, supporting communication needs, adapting examination approaches, avoiding ableist assumptions and being empathetic.
  • The Autistic SPACE framework can help to make GP practices more accommodating, irrespective of official diagnosis.

At least one to two per cent of the population are autistic, and the actual figure is likely to be much higher, because of underdiagnosis.

Barriers to healthcare experienced by autistic people include uncertainty around whether symptoms warrant presentation, difficulty booking and attending appointments, feeling misunderstood or disbelieved, and sensory-overwhelm in the waiting room.1-3  These barriers are associated with adverse health outcomes including a seven-fold increase in suicide rate, forty-fold increase in mortality from neurological conditions, and premature mortality from conditions affecting other systems.1 Autistic people have a reduced life expectancy, dying, on average, five to sixteen years younger than the general population.4,5  Here is our guide to supporting autistic patients in primary care.

1. Familiarise yourself with common co-occurring conditions

Autism remains under-diagnosed. The following conditions commonly present in autistic people. If you notice such patterns of co-occurrence, it may help to consider unrecognised autism. Likewise, be mindful of these conditions manifesting for people who are already known to be autistic.6,7

  • Other forms of neurodivergence, including ADHD, dyspraxia, dyslexia, dyscalculia and Tourette’s.
  • Mental health challenges, including disordered eating, depression, anxiety, self-harm and suicidality.
  • Neurological conditions, including epilepsy, migraines, and autonomic dysfunction.
  • Gastrointestinal conditions, including gastric dysmotility and irritable bowel syndrome.
  • Variant connective tissue, including Ehlers Danlos Syndrome and other forms of hypermobility.
  • Sleep challenges – especially delayed sleep phase syndrome.
  • Cardiovascular disease.
  • Endocrine conditions.
  • Autoimmunity.

Autism is a difference, not a mental illness. However, pervasive daily trauma from not conforming to neurotypical expectations can result in co-occurring psychiatric illness. If you refer a patient for autism assessment, explore their mental health, physical health and social support needs and arrange follow-up. As part of a holistic assessment, which may spread across appointments, it can also be helpful to consider potential underlying hypermobility, which may explain many physical health differences. Many physical differences might also be explained through autonomic dysfunction – for example, manifesting as gastroparesis or postural tachycardia syndrome (PoTS).

2. Get patients on a diagnostic pathway

GPs are not expected to decide if a person is autistic or not. Many doctors are not yet trained to recognise various presentations, particularly in people who mask their differences. We might do patients an injustice in writing rushed referrals. It often yields more detailed information to give referral forms to patients or caregivers to complete themselves, then have them passed back to you for checking and sending off. 

Managing expectations is vital. Waiting lists for assessments are several years long in many areas. ‘Right to choose’ pathways are becoming more available via providers with NHS contracts who provide services within Integrated Care Boards (ICBs), and some patients might afford a private assessment. The ‘official’ label might bring immense relief after a lifetime of more negative labels, facilitating self-forgiveness.

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Dr Sarah Michaels is a GP specialising in autism and ADHD, Dr Molly Moffat is a GPwER in neurodevelopmental conditions and Dr Sebastian Shaw is a clinical academic in Sussex, research lead for Autistic Doctors International and co-chair of the UK Autistic Health Research Network


          

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READERS' COMMENTS [1]

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Dylan Summers 17 February, 2024 10:38 am

“‘Right to choose’ pathways are becoming more available via providers with NHS contracts who provide services within Integrated Care Boards (ICBs)”

I have some ethical concerns about RTC pathways. Currently they seem to be a way to prioritise access for those best able to do their own research – brings the Inverse Care Law to mind. Should our practice be ensuring that all patients know about this option??