Five ways staff can humanise mental health care for autistic people

In 2012, my brother died. I had an autistic grief reaction (see Quinn, 2018; Mulhern, 2024) – I process deeply emotional events like grief differently, and my sensory and communicative differences became exacerbated. Like seven out of ten autistic people, I had also developed co-occurring mental health conditions such as anxiety, depression and obsessive-compulsive disorder (OCD). When I tried to access help, I was sectioned under the Mental Health Act. The doors to the psychiatric ward were locked behind me. 

The presence of these mental health conditions was not the result of a faulty autistic brain or a deficit within me, but a reaction to neuronormative environments and trauma. For example, from birth, many autistic people are unfavourably compared to their non-autistic peers after failing to meet developmental milestones. Schools can mean daily exposure to sensory, communicative and emotional overwhelm (Jones et al., 2020), behavioural expectations (Anderson, 2012; NAS, 2021), bullying and victimisation (Golan et al., 2022). This creates a pattern that can undermine autistic well-being. The addition of acute trauma can make it difficult for autistic people to cope. By the age of 12, autistic children are 28 times more likely to die by suicide or have suicide ideation compared to non-autistic people (Autistica, 2018).

A 2019 survey by the National Autistic Society revealed that 76 per cent of autistic adults reported that they had reached out for mental health support in the previous five years (NAS, 2021). However, research also indicates that mental health services often fail to provide autistic people access to appropriate treatment (Care Quality Commission, 2020; Doherty et al., 2023; NAS, 2021; Quinn et al., 2023), resulting in unmet health needs and poorer mental health outcomes. Sadly, like me, too many autistic people are inappropriately admitted to mental health hospitals where they experience higher levels of restraint (CQC, 2020; RRN, 2021; Quinn et al., 2023), solitary confinement (CQC, 2020; Department for Health and Social Care, 2023) and disproportionate lengths of stay – five years for autistic people compared to 39 days for non-autistic people (National Autistic Society, 2024 & NHS Benchmarking Survey, 2023). 

As autistic people can struggle to access helpful mental health treatment (NAS, 2021; Geurts & Jansen, 2012; Camm-Crosbie et al., 2019) more training is needed across the NHS and beyond (Brede et al., 2022). This requires acknowledging the lonely, difficult and often traumatic experiences autistic people incur in many healthcare settings and taking a curious, flexible, and collaborative approach (Brede et al., 2022; Riches et al., 2023). Having rarely encountered such an approach during my four-year detention, it is clear we need to do things differently. 

The National Autism Trainer Programme

This is why I became involved in the National Autism Trainer Programme (NATP).

NATP is run by Anna Freud – a mental health charity for children and young people – in partnership with At-Autism, a non-profit autism training, clinical services and consultancy provider for NHS England. This 'train-the-trainer' programme is co-designed, co-produced and co-delivered by autistic people, including support from over 110 experts by experience, like me. 

Research indicates that leveraging the experience of autistic means staff who work in a variety of professional settings have the best chance of achieving positive, experience sensitive outcomes (McGreevy et al., 2024). The course – which is open until November – is for mental health practitioners and other relevant staff who currently work or may work with diagnosed or undiagnosed autistic people. This includes those working in settings like inpatient mental health hospitals, community mental health, residential special schools and colleges and health and justice.

Crucially, NATP is focused on helping mental health staff build an approach that respects autistic culture. To achieve this, here are the top five things I'd like staff to know when providing support.  

1. Autistic people are likely to have been objectified for our differences and the accrual of microtrauma can be as impactful as capital-T trauma

Years of hearing "what's wrong with you?", "you're weird", "you just need discipline", and "if only you would…" take their toll. Such comments, even when well-meaning act to shape and restrict natural ways of being, sequestering opportunities for exploration and agency. Autistic people are encouraged to mask their differences, creating greater anxiety and mental distress (Pearson & Rose, 2021).

Tips:

Attend to power dynamics. Build mutually respectful relationships by demonstrating and cultivating curiosity

Listen to and respect the person's voice and their right to make choices – even those you might feel are 'unwise'.

Pay attention to similarities and strengths to increase feelings of belonging. Remember that too much focus on alleviating 'problems' can increase feelings of exclusion and restrict agency.

2. 'Mind your language!'

Many professionals will have written about, spoken about and interacted with autistic people using overly medicalised, derogatory language such as 'complex', 'difficult', or 'naughty'. Language can unintentionally convey neuronormativity and that autistic cognition is inferior to non-autistic cognition. It also may increase power dynamics, replicate past trauma and feelings of exclusion, and disrupt trust and engagement.

Tips:

Consider the impact of your language. Ask yourself, "what thoughts, bias and meaning is behind the words I am choosing to use?"

Recognise the world can be a hostile place for nurturing autistic wellbeing. Ask, "could this distress or behaviour be a valid communication of an unmet need, rather than, for example, 'naughtiness'?"

Transparency can build trust. Being open and honest might help reauthor damaging, deficit-based narratives and support the person to reestablish and engage with shared goals.

3. You can't support mental distress without first understanding and respecting autistic ways of being

Autistic people will respond autistically to therapeutic support as they communicate, interact, reason, think and engage with the environment (Best et al., 2015; Zajenkowska et al., 2021). This means they might react in ways non-autistic people might not predict or understand: (non)autistic people's world views are different and so extra time, effort and care to empathise and learn might be required. Additionally, expressions of autism can overlap with features of mental illness making it tricky to address the root cause of distress. Functional ability can vary meaning the person might be able to do something one day, and not the next, which can be confusing and frustrating for the autistic person too, so be kind!

Tips:

Take time. Find out which environments and type of therapeutic work best support engagement.

Be patient. Don't forget the person in front of you is autistic and their ability to do things and be consistent will fluctuate for a variety of disability related reasons. Be kind.

Be consistent and respond with kindness and compassion rather than judgement and expectation.

4. Autistic people communicate differently

Many autistic people will communicate in a more logical, fact-filled and direct way (Haydon et al., 2021). Speaking may not always be their preferred means of communication, and non-verbal communication may not match that which is communicated in 'real time'. For instance, reactions may be delayed, and some autistic people might laugh when they are anxious or maintain a blank expression when happy. Others may not talk at all or use spoken words intermittently; supporters need to listen autistically, understanding there are other ways to hear and understand beyond using one's ears.

Successful communication is also linked to supporting a person's processing speed. For me, when treatment plans were enacted quickly, my non-verbal response was wrongly assumed to be one of disinterest. This was due to slower processing and the need for discussion to scaffold the new plan to my existing understanding.

Tips:

Establish eye contact, communication and seating preferences

Use streamlined, practical, literal communication and send follow up communication such as written notes and appointment times

Build in processing time. If you are unsure, ask, "are you still thinking?"

5. Autistic people can experience sensory overload when accessing services

Everyone has different thresholds for how much sensory information they need to feel calm and alert. Some autistic people have a high threshold meaning they don't easily get enough sensory information from their environment. They might look for different ways to achieve the sensation they require e.g., if they have a high threshold for deep pressure touch (tactile) they will try to get the sensation of being pressed. Others will have low thresholds for certain sensory stimuli. This means they only require a small amount before feeling overwhelmed. When environments mean people experience too much, their nervous system becomes triggered into a stress response and emotions become dysregulated. A meltdown can ensue. 

Tips:

Accommodate sensory needs. For example, establish a daily sensory diet. This is personalised plan that can help people organize their nervous system and regulate their sensory input to stay focused and alert throughout the day

Remove demands and aggravating sensory input.

Do not judge. Think about what helps the person feel safe, regulated, and supported. 

Find out more

Staff can sign up to the National Autism Trainer Programme (NATP) on Anna Freud's website. The charity, which has been supporting children and young people for over 70 years, is working to close the gap in children and young people's mental health. NATP is helping to achieve this ambition by closing the gaps in the skills and knowledge needed to support autistic people of all ages within mental health settings.

References

Anderson, J. L. (2012). Remorse and Responsibility: Discipline and Punishment in Light of Autism. In Reframing Punishment: Reflections of Culture, Literature and Morals (pp. 19-30). Brill.

Brede, J., Cage, E., Trott, J., Palmer, L., Smith, A., Serpell, L., ... & Russell, A. (2022). "We Have to Try to Find a Way, a Clinical Bridge"-autistic adults' experience of accessing and receiving support for mental health difficulties: A systematic review and thematic meta-synthesis. Clinical Psychology Review, 93, 102131.

Best, C., Arora, S., Porter, F., & Doherty, M. (2015). The relationship between subthreshold autistic traits, ambiguous figure perception and divergent thinking. Journal of Autism and Developmental Disorders, 45, 4064–4073.

Camm-Crosbie, L., Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2019). 'People like me don't get support': autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism, 23, 1431–1441.

Care Quality Commission. (2020). Out of sight – who cares?:  Restraint, segregation and seclusion review. 

Crompton, C. J., DeBrabander, K., Heasman, B., Milton, D., & Sasson, N. J. (2021). Double empathy: why autistic people are often misunderstood. Frontiers for Young Minds, 9(10.3389).

Department for Health and Social Care. (2023). Baroness Hollins' final report: My heart breaks - solitary confinement in hospital has no therapeutic benefit for people with a learning disability and autistic people.

Doherty, M., McCowan, S., & Shaw, S. C. (2023). Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings. British Journal of Hospital Medicine, 84(4), 1-9.

Geurts, H. M., & Jansen, M. D. (2012). A retrospective chart study: the pathway to a diagnosis for adults referred for ASD assessment. Autism, 16, 299–305. 

Golan, O., Haruvi-Lamdan, N., Laor, N., & Horesh, D. (2022). The comorbidity between autism spectrum disorder and post-traumatic stress disorder is mediated by brooding rumination. Autism, 26(2), 538-544.

Haydon, C., Doherty, M., Davidson, I. A. (2021). Autism: making reasonable adjustments in healthcare. Br J Hosp Med, 82(12), 1–11.

National Autistic Society, 2024

NHS Benchmarking Survey, 2023 (see report from the Centre for Mental Health) 

Jones, E. K., Hanley, M., & Riby, D. M. (2020). Distraction, distress and diversity: Exploring the impact of sensory processing differences on learning and school life for pupils with autism spectrum disorders. Research in autism spectrum disorders, 72, 101515.

McGreevy, E., Quinn, A., Law, R., Botha, M., Evans, M., Rose, K., ... & Pavlopoulou, G. (2024). An experience sensitive approach to care with and for autistic children and young people in clinical services. Journal of Humanistic Psychology, 00221678241232442.

Mulhern, R. (2024, Jan 24). Patient-11 Podcast. Sky News Story Cast Team, London.

National Autistic Society. (2021). Good Practice Guide: for professionals delivering talking therapies for autistic adults and children. 

Pearson, A., & Rose, K. (2021). A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood, 3(1), 52-60.

Quinn, A. (2018/2021). Unbroken: Learning to live beyond diagnosis. London: Welbeck.

Quinn, A., Wood, A., Lodge, K. M., & Hollins, S. (2023). Listening to the experts: person-centred approaches to supporting autistic people and people with an intellectual disability in the mental health system. BJPsych Advances, 29(5), 308-317.

Restraint Reduction Network. (2021). Restraint Inequalities. 

Riches, S., Hammond, N., Bianco, M., Fialho, C., & Acland, J. (2023). Adapting cognitive behaviour therapy for adults with autism: a lived experience-led consultation with specialist psychological therapists. The Cognitive Behaviour Therapist, 16.

Zajenkowska, A., Rogoza, R., Sasson, N. J., Harvey, P. D., Penn, D. L., & Pinkham, A. E. (2021). Situational context influences the degree of hostile attributions made by individuals with schizophrenia or autism spectrum disorder. British Journal ofClinical Psychology, 60, 160–176.