Getting the approach right

Life-long

Neurodiverse conditions are life-long. Each manifests in a slightly different way and age can sometimes have an effect. Neurodiverse people have a variety of healthcare and pharmaceutical care needs, and careful communication is key. 

Some will need medication related to their neurodiverse condition; others may have different conditions requiring medication. For example, epilepsy, type 1 and type 2 diabetes are more common in people with learning disabilities. 

Anxiety and depression may also occur more frequently, often as a result of the person with learning difficulties struggling with externalising and internalising their difficulties. Evidence suggests that people with learning disabilities may experience early menopause and early dementia.

Children with some learning difficulties, in particular ADHD, will require pharmacological management as part of a comprehensive treatment plan that will include psychosocial interventions. 

Medicines licensed for ADHD in the UK are either stimulant (methylphenidate, lisdexamfetamine and dexamfetamine) or non-stimulant (atomoxetine and guanfacine). Factors affecting the choice of medication for a patient include co-morbidities, other medications, dosing flexibility, compliance issues and patient/parent choice. 

Medication for ADHD should be initiated by specialist services and doses titrated to achieve the optimum dose to reduce symptoms, create positive behaviour change and tolerable side-effects. Patients, carers and families should be aware that methylphenidate modified release preparations are not interchangeable so should be prescribed by brand.

Psychotropic medicines

There is no evidence to support the use of psychotropic medicines for the core aspects of autism, although there is a growing evidence base to support the use of medication for co-occurring conditions, albeit off-label.

Aripiprazole and risperidone have shown some benefit for repetitive behaviours but are recommended only on a case-by-case basis because of the risk of side-effects. 

Common side-effects of aripiprazole include insomnia and akathisia (inability to remain still). Risperidone may cause raised prolactin, weight gain, metabolic syndrome and sedation.

Psychotropic medications tend to be over-prescribed in children and adults with neurodiverse conditions. Prescribers should be clear about which symptoms are being treated, including sleep disorders, co-existing mental health or neurodevelopmental conditions, or challenging behaviour. All medication should be used as part of a management plan. 

Psychotropic medication should be initiated by specialist services in a shared decision-making process, taking into account the mental capacity of the person. Review for effectiveness and side-effects should take place after three to four weeks and the medication continued or discontinued as appropriate.

Neurodiversity may impact on the patient’s ability to read, understand and process information about their medicines. This may also apply to their ability to process information when communication is by speaking face-to-face, via telephone or web conferencing. 

The ability to focus can be affected too, and an increased sensory sensitivity can mean that background noise, loud, sharp noises, strong smells and bright visual stimuli can also impact concentration levels. 

Some young people with neurodivergent conditions may also have difficulty swallowing medicines, particularly dry medicines such as tablets and capsules, and may struggle with liquids due to sensitivities to taste and texture. Some children may fear needles and injections. One person with, say, autism may cope with, and respond to, medication differently from another. This demands careful understanding and communication on the part of pharmacists.

Supporting parents 

It is important to ensure that parents, families and carers are educated and informed about neurodiversity. Look into support available nationally and locally so that parents can be signposted to appropriate information. 

Attention also needs to be paid to medication needs. Children often need help and understanding when starting medicines. With autistic children it may be important to start with small tablets, for example, and increase the size as the child becomes more confident. 

Families should be encouraged to work closely with schools/colleges. For example, children with neurodiversity may benefit at school from their desk being at the front of the class to reduce distractions around them, being allowed extra breaks, including during exams, and sitting in a quiet area for periods of time to reduce the effects of sensory overload.

Parents should also be advised to access coaching/training in behavioural management to better understand the condition and develop skills to manage difficulties. Skills might include directive communication, reinforcing positive behaviour, ‘time out’ techniques and anticipating non-compliant behaviours.

Using the right language 

Careful use of language with neurodiverse people and their families is important. Be respectful and do not patronise. Ask, for instance, how the person likes to think of themselves because they may have strong views. Are they, for example,
a person with autism or an autistic person? They may not want to use the term at all, but their needs should still be recognised.

Providing clear and easy-to-understand information about medicines, and being prepared to listen to people with learning disabilities and answer any questions, is important. What works for one patient may not work for another. Several different ways of communicating with a patient may be needed to ensure they and their carers have the information they need. Always involve the patient in decision-making about their medication, regardless of their capacity.

Explaining complex information in a busy or unfamiliar environment can be overwhelming. Where possible, find a quieter, more comfortable environment for the consultation, and allow the child enough time to settle down and get used to the new setting before beginning. Consider the structure of the consultation carefully and outline it at the start. Tell them what you are going to say and say it. 

As the consultation progresses, remind the patient what comes next. Ensure that adequate time is allowed, which may mean providing a longer session than is usually offered. 

Neurodiverse patients may take longer to process information and it is useful to check their understanding throughout and at the end of the consultation. Suggest that they and their parents come back when they have had time to think about the information they have been given.

Clear instructions

Provide clear instructions on how to take medication in a way that is appropriate for the individual patient. Some people with neurodiversity may benefit from instructions on dose schedules, duration and adverse effects in a picture format with visual reminders (alarms, apps, notes on calendars, tablet and capsule dispensers). Others may be highly competent and compliant in terms of taking medication as part of their daily routine. Make sure parents understand this as well.

Autistic people may take words literally with reduced ability to interpret non-verbal communication (voice tone, body language). Take one tablet two times a day, for example, may not be clear enough. It is important to be clear about when the medicine is to be taken, e.g. 8 o’clock in the morning and 8 o’clock at night. Check their understanding. 

Changes in medication routine, such as to doses and frequency of medicines taking, can be difficult for some patients. Try to arrange consultations at the same time of day and on the same day of the week if you think the child, young person or their parent would prefer that. 

With regards to other health issues, make sure to inform patients, where applicable, about vaccines and health screening such as blood pressure and blood glucose. Neurodiverse patients may slip through the loop on these issues and prejudice their health. 

To learn more…

All registered health and social care providers are required by the Health and Care Act 2022 to provide training for their staff in learning about disability and autism, including how to interact appropriately with autistic people and those with a learning disability.