Communicating with autistic patients

People
By
Jennifer Cooke
-

The autistic community accesses pharmacy services frequently. Yet pharmacists often report uncertainty about how best to communicate, counsel and build rapport in ways that are respectful, effective and person-centred.

Autism spectrum disorder is hetero­geneous, points out disability specialist pharmacist and 2021 Consultant Pharmacist of the Year, Dr Manya Angley FPS.

Communication needs can vary, not only between individuals, but also for the same person from day to day – influenced by anxiety, illness, sensory processing, circadian rhythms or environmental factors, Dr Angley says.

Ideally, pharmacists should use validating, trauma-informed language that fosters safety, trust and empowerment, reducing the risk of re-traumatising individuals, says credentialed pharmacist and casual NSW academic Penny Beirne MPS – who has performed many Home Medicines Reviews (HMRs) for autistic people.

She says such patients have often had their concerns dismissed or minimised due to implicit bias and communication differences.

Best practice principles of communication – including using clear language, confirming understanding and avoiding overload – apply to all patients, Ms Beirne explains. But they are particularly pertinent when it comes to autistic patients and anyone who might need additional accommodations, such as individuals with cognitive impairment, people who have had a stroke or who have dementia.

Pharmacists in community and consultant settings can improve medicine safety and patient experience by adopting flexible strategies that respect each individual’s preferred mode of communication. Disability pharmacists such as Dr Angley emphasise that supporting autonomy and ensuring direct engagement are central to effective, inclusive care.

Ms Beirne also stresses that prioritising structure, predictability and transparency in interactions with autistic patients can be helpful in reducing anxiety, improving comfort and facilitating better access to healthcare.

Practical guidance

A simple Pharmacist Visit Communication Aid (see Case Study 1, page 61) or handover card can communicate a patient’s needs directly to the pharmacist/pharmacy staff without requiring patients to verbalise them repeatedly.

Further professional guidance will be available from the PSA Spectrum Foundation Program when it is launched later this year, and autism-specific organisations (e.g. Aspect at www.aspect.org.au/about-aspect). Referral to a GP, specialist, speech pathologist, behaviour support practitioner or allied health professional may be needed if medicine management is complex or if additional support is required for safe administration (see boxes, pages 59, 61, 62).

Box 1: Practical advice for communicating with autistic patients

  • Use clear, direct, precise language: Avoid jargon, metaphors and ambiguous speech; e.g. ‘Take ONE tablet every morning with breakfast.’
  • Speak to patients directly: Collaborate with carers to gather information and implement medicines plans, but don’t replace direct patient communication.
  • Explain the ‘why’: Link medication instructions to concrete outcomes; e.g. ‘Missing this dose could make seizures more likely. Try taking it early in the morning to feel less tired.’
  • Use a systematic, logical structure in conversation: ‘First, I will look at your medicines, then I will ask some questions about your diet and sleeping habits.’
  • Use active listening techniques: Encourage questions and opportunities for patient clarification; e.g. ‘So, can I confirm that you would prefer to taper your antidepressant slowly because you are concerned about it affecting your sleep? Did I understand you correctly?’
  • Use visual aids where possible: These include visual schedules, charts, sign language and personal communication systems with verbal explanation where relevant (e.g. Augmentative and Alternative Communication [AAC] system).
  • Be flexible and adaptable: Note the functioning of the patient on that day;
    e.g. if they are anxious/tired, provide extra processing time. Reduce sensory input (e.g. slower speech, more visual prompts, dimmed lighting or a private consulting room).

Box 2: Using AAC to support communication

  • Acknowledge and encourage use of patient’s preferred communication tool: Allow patient opportunity to indicate choices/express feelings/ask questions about medicines and health using their AAC device; e.g. ‘This tablet helps prevent seizures. Can you show on your PODD* how you want to take it?’
  • Use communication tool with other visual aids to reinforce instructions: e.g. visual schedules, easy-read handouts, digital link; e.g. point to morning dosage on visual chart while patient confirms with PODD symbol for ‘take’.

Case 1

Patient BG, aged 25, is non-speaking, autistic, lives with epilepsy (tonic-clonic seizures) and communicates using a Pragmatic Organisation Dynamic Display (PODD) Augmentative and Alternative Communication (AAC) system on their iPad.

Medicines include:

Adjunct Professor Manya Angley FPS (CredPharm MMR) Credentialed and Disability Pharmacist
Researcher, University of Western Australia and Flinders University
Adelaide, South Australia
  • lamotrigine 150 mg twice daily
  • valproate 500 mg twice daily
  • PRN intranasal midazolam 5 mg for status epilepticus.

BG occasionally chooses not to take antiseizure medicines, reporting fatigue, headaches and dizziness related to dosing via their AAC.

To support BG, consultations were conducted in a quiet room using a Pharmacist Visit Communication Aid. The pharmacist collaborated with BG’s disability support worker to use the PODD AAC to:

  1. Acknowledge that antiseizure medicines can cause fatigue, headache and dizziness, and that these symptoms can be unpleasant.

2. Explain that missing a dose can increase the risk of seizures, which can also result in the same types of symptoms that are often worse, can limit participation in enjoyable activities, and can be associated with risks like falls and injury.

3. Explore an adjusted routine: trying to take antiseizure medicines at the earliest opportunity in the morning to reduce daytime fatigue.     

Visual and literal explanations, combined with carer support for medicine administration, allowed BG to engage in decision-making. Liaison with the GP confirmed safety and appropriateness of the adapted schedule.

BG tolerated pharmacy visits with reduced anxiety and adherence improved. The care team reported increased confidence in managing medicines. Using the PODD AAC enabled BG to actively participate in their medication plan, demonstrating the value of flexible, personalised communication strategies.

Pharmacists can enhance safety, trust and autonomy by adopting flexible, person-centred communication strategies. Direct engagement, active listening, environmental adjustments, and collaboration with carers and communication aids like PODD AAC are key.

Tailoring communication to the individual and their specific support needs ensures inclusive, effective and empowering pharmacy care. 

Case 2

Penny Beirne MPS
(CredPharm MMR)
Credentialed Pharmacist, Sydney, NSW
Casual Academic, University of Sydney School of Pharmacy

Mx Kai (they/them), aged 38, is an autistic person with a new diagnosis of laryngopharyngeal reflux (LPR). Kai’s GP requested an HMR after Kai experienced challenges engaging with the recommended treatment regimen for LPR.

Kai also has a history of chronic migraine, insomnia, avoidant/restrictive food intake disorder (ARFID) and constipation. Kai’s STOP-BANG score, a 0–8 point screening tool for assessing a person’s risk of obstructive sleep apnoea (OSA) also indicated a high risk of OSA (for more on STOP-BANG, visit www.mdcalc.com/calc/3992/stop-bang-score-obstructive-sleep-apnea).

The recommended regimen initially included:

  • antacid/alginate (Gaviscon Dual Action) 20 mL four times daily
  • mometasone 50 mcg/dose nasal spray twice daily
  • psyllium husk 1.5 tsp in 250 mLwater twice daily
  • amitriptyline 10 mg at night
  • plant-based, anti-reflux diet.

All interventions except the amitriptyline were ceased because of sensory-related challenges.

Kai’s longstanding medicines comprised:

  • pantoprazole 40 mg twice daily taken
    30 minutes before meals
  • lamotrigine 100 mg twice daily
  • melatonin MR 2 mg nightly
  • rizatriptan 10 mg seven times a month
  • paracetamol 1 g four times a week
  • ibuprofen 400 mg four times a week.

To better manage Kai’s LPR while accommodating sensory preferences, I recommended they trial alternative alginate agents such as the flavourless Gaviscon Infant sachets – two sachets dissolved in 250 mL water after meals and 0.5 hours before bed. Another alternative suggested was Larri oral spray, two sprays to the back of the throat three or four times daily.

For constipation, wheat dextrin (Benefiber) 2 tsp in >1/2 cup water twice daily was suggested as a psyllium alternative, which is flavourless and textureless when dissolved in water. I corrected Kai’s nasal spray technique in the hope that correct use may reduce the unpleasant taste; I recommended the GP change the nasal spray to one with less of a bitter taste if improved technique does not help. I also recommended referral to a neuroaffirming speech pathologist and dietitian. I suggested a sleep study to rule out OSA, and for Kai to consider medicines overuse headache contributing to the chronic migraine, with a 12-week trial of two doses (maximum) of analgesics weekly, with progress recorded in a headache diary.

Box 3: Tips for conducting HMRs with autistic patients

Before your visit:

  • Send an SMS providing contact details (+pronouns); give flexibility for times of appointments by phone, text or email.
  • Once an appointment is confirmed, outline what to expect from home visit (duration, types of questions asked).
  • Outline how patients can prepare, e.g. have medicines ready, note down specific questions/concerns. 
  • Offer to provide a list of typical questions ahead of time. 

During your visit:

  • Use visual aids where possible. 
  • Explain the ‘why’ behind questions and advice, e.g. ‘I am asking about your bowel habits because constipation can be a problem with Parkinson’s disease and can compromise the absorption of your Parkinson’s medicines.’
  • Explicitly ask consent before touching patient, e.g. measuring BP, checking pedal oedema.
  • At end of home visit, summarise proposed recommendations and next steps; allow opportunity for questions.