Research: Mental Health Perspectives from 200 Autistic Women and Non-binary People
At the young age of 10, I started crying myself to sleep every night. Why? It was around this age that my differences became apparent to other kids at school and I was rejected as a result. As the saying goes, “kids can be cruel.” I saw my first psychologist shortly after and left with a diagnosis of major depression and generalised anxiety disorder.
A decade of appointments passed with numerous psychologists, yet no one could help me. My mental health was getting worse each day. Eventually, I was deemed a “complex case” with multiple overlapping diagnoses, which I now know to be misdiagnoses. What these practitioners could not see is that I was, and am, autistic.
Unfortunately, my story is not unique. I explored the mental health experiences of 189 autistic women and 11 autistic non-binary people through a survey. The respondents were aged between 19 to 68 years and from 25 different countries. There were 156 survey respondents that sought help from mental health professionals since being diagnosed (or identifying) as autistic.
When asked if these professionals have a good understanding of autism in women, a stark 40% of respondents said no, 40% said sometimes, and only 20% said yes. Does this lacking understanding of autistic women negatively impact the mental health support that we receive? The short answer from my survey is: undoubtedly, yes.
In the remainder of this article, I describe what these autistic women and non-binary individuals found helpful and unhelpful during mental health sessions. I then share their stress and emotion management strategies used outside of mental health settings.
Note: The findings are a non-representative sample of our experiences, mostly from respondents with LinkedIn accounts (i.e., 85% of respondents are employed and the majority are from Western Countries). Therefore, these survey findings only represent the select experiences of those that participated, and may not well-represent other autistic individuals. Secondly, many autistic men may resonate with these findings too. Lastly, the findings were obtained via frequency analyses and thematic analyses of the survey data.
Mental health sessions: What helps?
Two themes emerged when I asked autistic women and non-binary individuals about what they found helpful during mental health sessions.
These themes were…
Speaking with a professional that is autistic themselves, has lived experience with autism, or is otherwise highly specialised in the experiences of autistic women.
Feeling heard and having autistic identity or experiences validated by the professional.
For example, one autistic woman mentioned that…
“Speaking to an autistic therapist recently has been a relief and very emotional, as it was the first time someone actually understood me.”
Similarly, another described that…
“My psychologist is autistic, so believed me when others wouldn’t. She validated my identity with a diagnosis.”
Beyond understanding and validation, autistic or highly specialised professionals may use a more “autism-friendly” approach to therapy that considers our unique ways of communicating, understanding, and thriving in the world.
“My counsellor is very knowledgeable on autism... She is able to communicate with me in a direct manner, meets my communication style, gives me time to process information, gives boundaries, and does not use methods which invalidate my emotions.”
Mental health sessions: What is not helpful?
The autistic women and non-binary individuals had a lot more to say about what was unhelpful during mental health sessions. Four key themes emerged from the survey responses.
These themes were…
The professional having a poor understanding of autistic women or autism in general.
Feeling dismissed, invalidated, or gaslighted.
Use of mainstream strategies that fail to account for neurodivergence.
Not using an autism-friendly communication style.
*in order of frequency
Let’s unpack each of these in turn with some examples.
Poor understanding
If you ask me, the first pre-requisite of a mental health professional accepting an autistic client is a solid understanding of autism across different ages and genders. Sadly, this seemed rare.
For example, one autistic woman described her experiences in mental health sessions as…
“Awful. They did not understand autism, so we could never tackle my issues. They tried to make autism the issue.”
Without a proper understanding of autism, common but incorrect stereotypes were even referred to during sessions. These included that autistic people aren’t caring or empathetic, cannot understand basic social structures, aren’t able to function as members of society, or can only have one or two interests. Wrong, all wrong.
Dismissal, invalidation, and gaslighting
This sub-heading should not exist, but it does. It is devastating that when some autistic women and non-binary individuals (14%, to be exact) needed support the most, they were met with dismissal. They felt invalidated. They were even gaslighted.
Harrowing survey responses included:
“They made me write out my fears and basically told me that they were stupid and that I was the problem and I would never change and made me even more scared of social situations.”
“He actively traumatised me via his dismissal of my issues and talking down to me.”
“My psychologist… acknowledged that I met all the criteria for Autism Spectrum Disorder and then refused to look into it. His basis was that ‘your emotions are the problem’ and told me ‘you can feel anything, just don’t let other people see it.’”
“Mental health professionals weren’t helpful. They were condescending, kept telling me I was a drama queen and that ‘other people are worse than you’ so refused to help me when I needed it. I even had a meltdown in front of a psychiatrist who said ‘Now what are you crying for now?’”
Several more shared similar experiences, with a few explicit mentions of feeling “traumatised” from sessions like these.
Mainstream approaches
This finding was unsurprising to me as an autistic woman. Neurotypical or mainstream solutions for autistic people simply aren’t that effective. Our brains work uniquely, therefore, support approaches should be tailored to how we perceive, feel, and understand things as autistic people. There were 6 mentions of Cognitive Behaviour Therapy specifically not being a useful approach, with several more mentions that therapy approaches should stem from a nuanced understanding of neurodivergence.
Communication style that is not autism-friendly
Last, but not least: communication. Autistic people often prefer to communicate differently compared to non-autistic people. This should be factored into mental health sessions with autistic clients.
When overlooked, survey respondents described sessions as:
“Unhelpful if they spoke to me in rather “airy fairy” ways… using vague language. I found that hard to connect with.”
“Not helpful because there is not practical or step by step advice or tips.”
“Hard. Too many of them don’t ‘speak autistic’. Makes it hard to develop rapport.”
Putting it all together
“Unfortunately, I've had a difficult time finding psychologists who have expertise in supporting autistic people. This has led to some instances where I felt that the person I was working with was dismissive of my experiences and lacked the relevant knowledge to provide me with skills and tools that were tailored to my experience as a neurodivergent person. I've come to realise that I want to work with a counsellor or psychologist who is also neurodivergent and is focused on providing support for me to be my authentic self rather than masking. I also think I would benefit from someone who really understands the impact of autistic burnout.”
Strategies for managing stress
It is clear that mental health support options aren’t always helpful. There are also barriers to accessing support in the first place. Therefore, I was interested to explore how fellow autistic women manage their own stress. What tips and strategies do they have that may be helpful for other autistic individuals?
All 200 of the surveyed individuals described the stress management strategies that they use. Seven themes emerged. In order of frequency, those themes were:
Alone time: Removing oneself from others and reducing sensory input (34%)
Movement: Exercising, pacing, dancing, or other physical activity (28%)
Meditative or mindfulness practises: Deep breathing or present moment awareness (19%)
Repetition: Engaging in simple, repetitive rituals or stimming behaviours (18%)
Nature: Spending time outdoors or looking onto nature (17%)
Hobbies: Engaging in existing hobbies (17%)
Animals: Spending time with pets or watching animals (16%)
Sometimes, these strategies were used in isolation; but more often, different strategies were combined.
These autistic women regulate their stress through multiple strategies, including:
“Petting my dog, sitting in a dark, cool room with a quiet podcast. Permission to not be helpful to anyone for a designated amount of time.”
“Being alone in a controlled environment that I feel comfortable in. If it's ongoing day to day stress I consciously make myself slow down. I wear noise cancelling ear plugs, use breathing techniques, stimming and/or humming.”
Strategies for managing sad emotions
I was curious whether other autistic women, like me, have different strategies for when they are feeling sad instead of stressed. Indeed, a different pattern emerged from the survey responses.
In order of frequency, the top strategies for managing sad emotions were:
Support from a partner or close friend: Reaching out for affection, to vent, or seek supportive advice (30%)
Alone time: Removing oneself from others (21%)
Emotion release: Writing, crying, or otherwise letting emotions out (20%)
Hobbies: Engaging in existing hobbies (19%)
Animals: Spending time with pets or watching animals (15%)
Resting: Taking a nap, sleeping, or otherwise resting in bed (11%)
Music: Listening to music (10%)
So, a key distinction is that when stressed, the top strategy used was taking time away from people and, well, everything. Whereas, when sad, the top strategy was going to a partner or close friend for support.
Sad emotions were often managed through a combination of strategies, such as:
“Talking about it, distracting myself with things that make me happy, sleep, letting myself cry, physical comfort.”
“Crying and allowing myself to feel my feelings, taking time to rest, speaking to my partner and therapist, spending time with my pets.”
Take home messages
For autistic individuals
Be selective when seeking support. Many mental health professionals are not appropriately trained in autism, particularly autism in women. Those that are trained may hold false assumptions about what autism is if their training is not paired with lived experience. Therefore, it is okay (recommended, even) to ask professionals about their lived experience with autism before booking an appointment. If support options are not useful or available to you, peer support options are a great alternative. These include autism support groups, resources created by other autistic individuals, or reaching out to autistic friends or family members.
For mental health professionals
I went through a four year psychology degree and learned nothing about autism. I even failed to realise during that time that I was autistic. Luckily, I connected with autism advocates immediately after graduating. This has been life-changing both personally and professionally. If you work with autistic clients, or plan to, I passionately recommend consulting with the autism community, particularly seasoned advocates. Listen to different autistic voices. Learn autism-specific strategies. Validate our perspectives, even if they diverge from what you know.
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