Why we need to prioritise the mental health and wellness of autistic people
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For World Autism Acceptance Week, we are looking at how being autistic can affect a person’s experience of their mental health. Autism spectrum disorder (ASD) is not a mental health disorder, but a neurodiversity, like ADHD. However, owing to our world being majority made by and for neurotypical people, autistic people can struggle with their mental health in a world that not only isn’t designed for them, but that often misunderstands them and their needs too.?
Written by Bryony Porteous-Sebouhian
Autism & mental health: misinterpreting behaviours as symptoms, and crossover
Last year, the BBC reported [1] on a staggering 10% rise in the number of autistic people being admitted to mental health units, with the majority of detentions being enforced under the Mental Health Act.
The National Autistic Society’s mental health policy lead, Felicity Stephenson, said at the time:
“We are failing autistic people – this is a national scandal.”
The fact that autistic people are being sectioned under the MHA represents a fundamental misunderstanding of ASD and a fundamental lack of appropriate support for those who might be struggling, as well as their families and loved ones.
As Ms Stephenson pointed out in the same article, autistic people who do not have a mental health condition should not ever be in an inpatient facility, in fact:
“It will actually make behaviour worse and can be a traumatising experience as they're in an environment where people haven't had the adequate training to understand how to support autistic people. Wards can be loud, noisy and bright, which can really affect sensory differences, causing escalations in behaviour and leading to people being sectioned for longer.”
Sadly, this traumatising experience of inpatient environments can then lead to autistic people who hadn’t actually been displaying mental-ill health, to developing depression, anxiety and other common mental health conditions.
There are many behaviours that fall into the autism spectrum that an uninformed eye could misinterpret, and unfortunately, misdiagnose as a mental health condition. In fact, Ryan Clarke, one young man mentioned in that same BBC article had initially been diagnosed with schizophrenia when he was originally sectioned.
As Ms Stephenson pointed out, an important distinction to make here, is that autistic people who do not have a mental health condition do not in any way benefit from being hospitalised, in fact it can lead to their mental health degrading and their behaviours becoming harder to manage.
Though there is some research that suggests autistic people might be more likely to experience mental health issues such as anxiety. A 2019 Swedish study [2] found that 20% of autistic people involved in the study had anxiety, whilst 9% of the control group who weren’t autistic had anxiety.
Looking at anxiety as one example, it can be difficult to distinguish between a similarity and a comorbidity. This is because some autistic behaviours might inherently look similar to anxiety symptoms, and vice versa. In fact, the Anxiety and Depression Association of America [3] has pointed out five behavioural symptoms where the line between autism and anxiety in an autistic person might be particularly hard to draw:
From socialising, to work, school, higher education, relationships and even accessing support and treatment for those same neurodiversity’s, functioning in a world designed for neurotypical people can be exhausting, which in turn can lead to autistic people struggling with their mental health.
How can we safeguard and improve the mental health of autistic people?
For this article, we were put in touch with a young woman who has lived experience of mental health conditions, as well as being autistic. For her own privacy she as asked to be referred to as Mette, a name she sometimes writes under.
Discussing how her mental health and autism interact, Mette said:
“I knew about my mental illnesses before I knew about my autism. Symptoms of my mental health conditions coincided with a complex knot of neurodiversity, with one part (disorders) needing to be treated and solved, and the other (autism) needing to be supported and nourished.”
Echoing some of the points made above, Mette commented on the possible vulnerabilities autistic people might have to mental health conditions, “It’s widely documented that autistic people are more likely to experience comorbid mental health conditions, often due to lack of resources and support - it’s not unusual for our difficulties to intersect.”
Something many autistic people struggle with is how difficult it can feel to access mental health services. When this is paired with one or more comorbid mental health diagnoses the experience of being in these services can be distressing, invalidating and frustrating:
“Unfortunately, most systems aren’t designed with neurodiversity in mind. Much of the time we are an accessibility afterthought, with brightly lit hospitals and lengthy, inconsistent assessment processes providing an often overwhelming and unaccommodating space.”
Mette noted here that the complexity inherent in her various mental health diagnoses and how they interact with her autism, as well as the impact of daily medications has lead to a complicated mix of symptoms and behaviours, resulting in many services discharging her, saying they cannot “accommodate” her needs or treat her appropriately.
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Mental health services, as well as the neurodevelopmental services that treat autistic people need to be more accessible for neurodiverse people. The first step, Mette said, “is to realise that we are not a monolith, and making one adjustment that might work for one autistic person, could equally trigger another.”
Although she acknowledged the difficulty in encompassing all autistic people into systematic change, Mette did have some suggestions.
Firstly, she said: “There’s a lot to be said for representative support. Having access to guidance, advice, and treatment from someone you share lived experiences with can play a huge role in how you respond and manage your condition.”
Secondly, she suggested localised consultancy: “I think it’s particularly relevant in a service framework. Paying autistic people for their advice helps to facilitate a balanced exchange of invaluable insight and perspective, without tokenising or patronising us.”
Lastly, Mette noted the need for flexibility within services: “Whilst neurodivergents are often sticklers for routine, mental health services should be designed to change.”
“Being agile and responsive helps to facilitate a process that can accommodate us case by case. We aren’t all the same.”
Facing assumptions and stereotypes as an autistic woman
Autism as a neurodiverse disorder has a history (similarly to ADHD) associated with boys and men. There is a stereotype in people’s minds when they think of an autistic person. Mette was first assessed at 17, an experience which she speaks on with frustration:
“The initial assessment was clearly designed for children still developing their social skills and ability to interact - there was no depth or nuance to account for the well documented habits of those with marginalised identities masking, bottling, and camouflaging their behaviours. It unsurprisingly concluded that I was not autistic, measured by the social parameters I was socialised and conditioned to conform to.”
At a later date, when Mette was 21, a second consultant, came to a quick conclusion, that she was indeed autistic.
“I was fortunate that he had a pretty comprehensive understanding of gendered presentations of autism,” she told us.
This second assessment was private, something Mette recognises as “an immense priviledge”. Her initial NHS referral for an autism assessment was in 2018, she is still on that waiting list. Being unable to easily access a diagnosis and/or treatment for autism through the NHS as a woman or non-binary person is not uncommon. Nor is the experience of autistic women and non-binary people being doubted or simply not believed.
“It’s incredibly painful to not have your very real and distressing experiences recognised by someone who doesn’t connect your presentation with your experience. I believe this is highly gendered. My autistic presentation doesn’t look like the typical young (often white) boy with ear defenders who plays with trains. Instead, I largely conform to society’s neurotypical expectations, making polite eye contact and bottling my meltdowns for the comfortable privacy of my own home.”
The current culture of mental health awareness, as well as neurodiversity awareness is one of encouraged openness, where those with a diagnosis are often held up as representatives and within friendship groups discussions around mental health struggles are being more and more rewarded. But, does this culture suit autistic people?
From Mette’s experience, she finds it incredibly hard to be public about both her autism diagnosis, and her mental health conditions. About this she said:
“This is for a number of reasons, but primarily it’s to protect myself from the judgement and disbelief that I’ve received from disclosure. This certainly isn’t the case for all neurodiverse people - many articulate their challenges and document their experiences beautifully, providing relatable autistic presentations to the people who want and need to see themselves represented.”
World Autism Acceptance Week is about raising awareness of autistic people, supporting autistic people, diagnosed or not, and celebrating autistic people. To round off, Mette expressed three key points that she would communicate to those who love, care about, work with or are friends with autistic people:
“When I share my needs with you, honour that trust.
I want your belief, not you curiosity.
I am an expert in my own lived experience.”
Reference list:
Oregon Training and Consultation 9a.m. -2:30p.m.
2 年It should say, Why wee need to priorities the mental health an wellness of people who experience Autism.
Behavioral Health Executive | Strategist | Change Manager | Connector
2 年Isn’t it much more appropriate to say people with autism? Their diagnosis shouldn’t be the primary way they are defined as human beings.