Autism, Women and Work
December 2, 2017 - Daniel Aherne
Here at Adjust we believe that the figure of 4 -1 ratio of males to females being diagnosed with autism is misleading. Many autistic women and girls are going undiagnosed because of the damaging stereotype that autism is primarily a male condition. As a result, many undiagnosed autistic women are not receiving the support that would ensure they can reach their true workplace potential. Suzanne Clark is an autistic woman who worked for many years before receiving an autism diagnosis. We talked to Suzanne about her journey to getting a diagnosis and the impact the condition has had on her life. Here she recounts her journey.
In 2012 my world fell apart and I suffered my second and worst major breakdown. I have struggled all my life with mental health problems – depression, anxiety, OCD and have spent my entire life feeling like the proverbial square peg.
As a child I definitely felt ‘different’ but was considered academically gifted and so, my oddities were very much overshadowed by my intellectual ability. I didn’t fit into any peer group – least of all with other girls – I was a tomboy and had no interest or desire to join in their bizarre games and social rituals. But as is typical in females, I was able to closely observe and imitate certain behaviours to appear relatively ‘normal’ so as not to stand out too much.
“I didn’t fit into any peer group – least of all with other girls”
I was an expert chameleon. However, the mask I wore took its toll. My teenage years were horrendous and I suffered my first bouts of severe depression. My anxiety and OCD tendencies were also at their worst. I could make friends but struggled to keep them. I seemed to make endless social gaffes, upset people or annoy them and I lost count of the burnt bridges I left behind me.
At age 24 I suffered my first ‘burnout’ when, 2 years into a career I loved (but that was entirely unsuitable), I just couldn’t keep up the façade. Ten years of medication and therapy followed until an eagle-eyed psychiatrist was finally able to explain why I had struggled all my life.
Damaging stereotypes of autism being a “male” condition can often lead to autistic women not being recognised by the medical profession who are ultimately responsible for diagnosing autistic people. Suzanne, however, by chance had a trainee psychiatrist who could recognise that Suzanne may be autistic.
I believe I was diagnosed by chance after I attended a routine appointment with my psychiatrist and a student psychiatrist was observing. I had been referred to the psychiatric department 2 years previously following my breakdown and had twice been admitted to the Mental Health Unit when my depression became unmanageable. I had been attending appointments routinely to discuss symptoms, switch medication, collect new labels and generally continue going around in circles. The psychiatrist was clearly baffled as to what to do with me.
At this appointment however, I was questioned extensively about my childhood behaviour, my OCD, interests and obsessions. Upon being told they suspected I may be on the autistic spectrum the relief was immediate and immense. I scored very highly on the pre-screening ADOS questionnaire and although I found the diagnostic screening process a little strange – and certainly very male-focused – I was diagnosed with Asperger Syndrome in 2014 at the age of 38.
“I found the diagnostic screening process a little strange – and certainly very male-focused”
Many autistic women can often go undiagnosed as they can potentially be very good at fitting in to a workplace and masking the difficulties they may be having. Suzanne goes onto explain how this affected her.
I have always struggled with any type of relationship but I find work relationships particularly difficult. I am by nature a people pleaser and worry excessively about what people think of me. I hate confrontation and find it impossible to say ‘no’. My sensory issues mean my mood can fluctuate depending on noise levels, I feel very intimidated by colleagues who aren’t overtly friendly or welcoming towards me and will avoid people I’m wary of which does not bode well for good working relationships.
“My sensory issues mean my mood can fluctuate depending on noise levels”
Having to wear a mask of normality in a desperate effort to fit in is mentally and emotionally draining and I frequently still misread people or situations which I then ruminate about excessively. I have major sleep issues due to overthinking things and so, my anxiety levels are permanently sky high. This makes me emotional and prone to tearful outbursts or quiet meltdowns, both of which have earned me a reputation for being an ‘emotional woman’.
“Having to wear a mask of normality in a desperate effort to fit in is mentally and emotionally draining”
I have spent most of my career in a very harsh, male dominated environment which only taught me to hide my vulnerabilities even more, hence the two major breakdowns 11 years apart but very little in-between as I desperately, and secretly, struggled to hold things together.
Suzanne has had mixed experiences in the workplace since being diagnosed but is currently working in a very supportive environment and is open to her employers about the adjustments needed for her continued success in the workplace.
Upon being diagnosed in 2014 I had been off sick from work for almost 2 years and following my diagnosis I was medically retired from the 17 year long career I loved on ill health grounds.
I spent 3 years floundering – I had no idea what I could, or wanted to do. When I did finally venture back into the workplace I had two very bad experiences; the first lasted 4 months with an overbearing manager who had good intentions but did nothing but send my anxiety levels soaring.
I lasted 8 weeks in the second job – my first tentative foray into the private sector. It was a thoroughly bad experience despite having a very supportive job coach and I just didn’t have the resilience to cope.
I have been in my third job for almost 4 months and made a conscious decision when I started to be entirely open about my condition. This has been well received and I have a very supportive and understanding team who encourage me to continue raising awareness. I presented a short talk on autism in women recently and received excellent feedback.
My sensory issues have been taken seriously and my manager even devised a methodical working system to help me when I struggled with my workload and prioritising tasks.
“I have a very supportive and understanding team who encourage me to continue raising awareness. I presented a short talk on autism in women recently and received excellent feedback”
We asked Suzanne if she thought employers had enough awareness of autism?
“From my own experience of 4 very different workplaces, there is a significant lack of awareness about autism among employers and much more needs to be done, not only to raise the profile of the condition in general, but also to highlight the radical differences between male and female lived experiences. Autism is a wide-ranging condition yet my experience in helping to raise awareness in my current workplace has taught me that if people have any knowledge, it tends to be only about certain, more commonly known ‘classic’ autistic characteristics and sadly, the ‘Rainman’ IT/maths genius stereotype is very much alive in the workplace”.