World Autism Week – have we moved from Awareness to Acceptance? | Our Blog

World Autism Acceptance Week took place from 27 March to 2 April and SLaM, alongside autistic people and supporters all around the world, arranged a number of events to mark this week. Only two years ago, we were marking Autism Awareness Week. What led to the move from Awareness to Acceptance – and are we moving to a position of more acceptance of autistic people using SLaM services?

Why Acceptance rather than Awareness?

While the United Nations still promotes Autism Awareness Day which this year took place on 2 April, the National Autistic Society made the decision to make changes back in 2021. The change from Autism Awareness to Acceptance was based on feedback from autistic people themselves. The reasons are well articulated by self-advocate Sarinah O’Donoghue in her BBC video ‘An Autistic Person's Take On Autism Awareness Week’ highlights the two main arguments for making the change:

• Autism being well known about so awareness is less relevant.
• Autism often being presented as a condition that should be feared or ‘cured’, so a more positive picture is required.

Sarinah says “For us, ‘acceptance’ signifies acknowledgement of our differences, while ‘awareness’ suggests that they’re merely tolerated. When autistic people say we want acceptance over awareness, what we’re essentially saying is society needs to change, not us. Moving from ‘awareness,’ which is often used in discourses on disease and illness, towards ‘acceptance,’ which is more positive, will help to destigmatise the condition and enable autistic people to speak about our condition on our terms”. (BBC, 2023)

Autism Acceptance talks in SLaM

The three talks hosted by SLaM during Autism Acceptance Week shed further light on the reasons why we need to promote autism acceptance.

Mental Health Act and Autism

On Tuesday, Quinton Deeley, Consultant Psychiatrist on the National Autism Unit, talked about the Mental Health Act and how this is applied in relation to autistic people. The National Autistic Society has been campaigning for changes to the Mental Health Act and how this is used in relation to autistic people, and in a recent post in response to the publication of inpatient data, ‘Number of autistic people in mental health hospitals: latest data’ (NAS, 2023) noted:

• In total 2,045 autistic people and people with learning disabilities are in inpatient mental health hospitals in England and 1,290 (63%) of these people are autistic.
• In 2015, autistic people made up 38% of the number in hospital, now it is 63%.  
• The average length of stay is around five and a half years.
• The overwhelming majority (93%) of autistic people who are detained in hospital are put there using the Mental Health Act 1983.
• This data in relation to detention of autistic people into mental health units demonstrates there is a long way to go before we can claim autism acceptance in this area.

 

Mental health services and Autism

The challenges of supporting autistic people across the Trust’s mainstream mental health services were highlighted during Thursday’s talk from Kevin Vento, Consultant Psychologist in the Croydon Health and Wellbeing Space and Tamara Anderson, Principal Clinical Psychologist across the Lambeth Acute Directorate. Kevin described how many people who come into the Croydon Health and Wellbeing Space believe they have autism but have not received a diagnosis, some due to struggles in being referred, with others being on very long waiting lists. Those who have been diagnosed with autism report finding this hampers their opportunities for getting support, for examples due to mainstream mental health services saying they can’t help, or autism ‘intersecting’ with other difficulties including trauma and psychosis and this then being hard for professionals to ‘unpick’ and decide on the most appropriate next steps.

The National Autistic Society and MIND have written a ‘Good practice guide. For professionals delivering talking therapies for autistic adults and children’ (NAS and Mind, 2021) in which they highlight:

• High numbers of autistic people experience poor mental health: a 2019 survey found 76% of autistic adults report reaching out for mental health support in the last five years.
• Anxiety and depression are the most common mental health problems among autistic people.
• Autistic people are significantly more likely to think about, attempt, and die by suicide than the general population.
• Research has found healthcare professionals can lack experience in supporting autistic people’s mental health and can lack confidence with autistic clients.

The guide describes helpful adaptations that can be made for autistic people using mental health services, especially talking therapies, and many of these were highlighted by Tamara Anderson when describing the adaptations, she uses when working with autistic adults. These include:

• Consider the environment – turning lights down/off, offering choice around rooms and trying to find a quieter room.
• Sensory sensitivities accounted for – providing fidget toys, eye masks, ear defenders, weighted blankets, avoiding touch.
• Routines – making sure the autistic person knows what is happening and when, providing reminders of ‘now and next’ and warning of upcoming meetings.
• Communication – providing short sentences, offering limited choices (“is it A, B or something else?”) and giving time to respond to questions.
• Meetings – considering the environment in the meeting room, only having people who really need to be there, reducing distractions such as typing in the meeting.
• Recognising transitions can be stressful (e.g., from waiting room to therapy session, from one activity to another) and so time may be needed for the person to settle.
• Eye contact – recognising this can be difficult so not insisting on this and not assuming that just because someone does not have this it means they are not listening – they may be listening more successfully without eye contact.
• Dietary sensitivities accounted for on wards – recognising that certain textures and presentations of food is challenging, allowing families to bring in food that is acceptable.
• ‘Meltdowns’ – recognising these are because someone has become overwhelmed and they need time to recover, so reducing demands and giving space and supporting the autistic person to engage in soothing activities.

We hope that colleagues working across SLaM and beyond can consider these adaptations to avoid the challenges in accessing services that Kevin underlined.

Involving Autistic People in Research

The final talk was on Friday and was by Bethany Oakley and Charlotte Boatman, researchers at Kings College London. Bethany and Charlotte talked about the work they are doing assessing the use and acceptability of the Molehill Mountain app for autistic adults. The app was developed between Kings College and autism charity ‘Autistica’ and aims to help autistic people understand and self-manage anxiety. As noted above, anxiety is experienced by a large number of autistic individuals, and so this app is important as a way of supporting autistic adults to understand and manage anxiety. In SLaM, within the research protocol, the app is being offered while autistic adults are waiting for psychoeducation or therapy, and there is hope this will be a useful support for those waiting, as waiting times for psychological input can be years.

The research is well supported by an advisory group made up of paid self-advocates who advise the research team on all aspects of the research process. During and after the talk Charlotte highlighted how the research team make adjustments to ensure the autistic researchers can contribute fully, including: 

• Providing information at the start about everyone on the project including their roles and including photos.
• Made efforts to understand everyone’s communication preferences and make adjustments for these, for example, some people would talk through chat, some through video/microphone and some would send their comments afterwards.
• Having one link person so autistic researchers know who to contact.
• Sending an overview of what to expect before each meeting, so that nothing catches people off-guard, and they have time to prepare if they need this. 
• At the start of each meeting or task, there is a slide or an explanation which makes it very clear what the purpose of what it is and exactly what is expected from the autistic researchers. 
• The research team sent out a predicted 6 monthly schedule with approximate times when the autistic researchers would be contacted.
• Autistic researchers choose whether or not to bring somebody else to the meeting and to get help with tasks. 

We look forward to hearing the outcome of the research, and hope researchers and clinicians can draw on the success of the Kings research team to consider how we can engage in more co-production with autistic adults, both in relation to research and other service developments.

Conclusions

Autism Acceptance Week highlighted that, despite evidence of good practice happening locally, there is a long way to go before we can really claim that autistic individuals receive equal acceptance and opportunities in society. Autism Acceptance Week is a call to everyone working across SLaM and our partners, to challenge any negative perceptions you may hold in relation to autism and to consider what you can and will do to make autism acceptance a reality.

This might include:

• Educating yourself about autism if you have gaps in your knowledge – look out for the mandatory Oliver McGowan training coming to the Trust soon.
• Being inclusive rather than exclusive – if an autistic person is referred to your service think about how you can help and what adaptations you can make, using the suggestions of reasonable adjustments and resources listed above.
• Being curious about the role autism plays in people’s lived experience – often autistic people can tell you, and it is often therapeutic to explore this with someone, especially where they may have a number of diagnoses.
• Acknowledging that people may have been treated badly by others, including healthcare staff, and recognising the impact of this on their day-to-day functioning.

The hope is that, in future, there will be no need for weeks such as Autism Acceptance Week as autistic people will experience equality and acceptance in society, but until then, we can all have a positive impact on the experiences of autistic adults within services.

About the Author

Sophie Doswell a Consultant Clinical Psychologist working across adult autism and ADHD services within South London and Maudsley NHS Foundation Trust. 

References

Deeley, Q. (2023) Autism and the Mental Health Act : Where are we now? Autism Awareness Week, 28^th March 2023, SLaM (online).

National Autistic Society (2023) Number of autistic people in mental health hospitals: latest data. [online] Available at https://www.autism.org.uk/what-we-do/news/number-of-autistic-people-in-mental-health-hos-7 [accessed 12th April 2023]

National Autistic Society and Mind (2021) Good practice guide. For professionals delivering talking therapies for autistic adults and children  [online] Available at https://s2.chorus-mk.thirdlight.com/file/24/asDKIN9as.klK7easFDsalAzTC/NAS-Good-Practice-Guide-A4.pdf [Accessed 12th April 2023]

Oakley, B. & Boatman, C. (2023) Feasibility study of an app-based anxiety intervention for autistic people. Autism Awareness Week, 31^st March 2023, SLaM (online).

O’Donoghue S. (2021) An Autistic Person's Take On Autism Awareness Week. BBC. The Social [online video] Available at https://www.bbc.co.uk/programmes/p09c4gyt [accessed 12th April 2023]

United Nations (n.d.) World Autism Awareness Day 2 April [online] Available at https://www.un.org/en/observances/autism-day/background [accessed 12th April 2023]

Vento, K. & Anderson, T (2023) Understanding How Autism Impacts on an Individual’s Mental Health and Reasonable Adaptations. Autism Awareness Week, 30^th March 2023, SLaM (online).