Hidden Disabilities: The Battle of Assumptions & Bias
“Everyone you meet is fighting a battle you know nothing about. Be kind. Always.”
Do you remember this quote? It does the rounds a lot on social media, especially around mental health awareness times and the loss of famous people, too young, too soon.
Yesterday I was delivering autism training and during questions from attendees, I was asked a question that really struck me. I guess it was because it was not one I’ve been asked before (questions are always very similar, across the many, many sessions I’ve delivered). To summarise, after sharing challenges that I face as an autistic woman with ADHD, I was asked if people assumed I didn’t have struggles because of how well I present, how articulate I am. At that point in time my surface was that of a competent and confident person. The question was delivered with kindness and curiosity not malice and I was grateful for it. This in itself highlighted a challenge that people with hidden disabilities face and a great learning moment.
Comfort in Special Interests
Autism is one of my special interests. Therefore, when I am delivering training, I am in a place of comfort. My articulation and confidence are born of that solace. My brain is engaged and passion fired up. I have researched, deep dived and lived autism personally ever since the day my daughter’s teacher asked me to get her assessed for autism. Once I got my own diagnosis, I also re-lived my entire life in my mind with this new knowledge of being autistic. My bookshelves are stacked with books from scientific and psychological to other lived experiences of autism. Podcasts play through my noise cancelling headphones as I paint and craft and of course, I deliver training to health and social care staff. I am in essence, in a flow state. So how could this woman (me) be the same woman that at times, cannot function at all?
Not so Hidden
The irony is that there are also times when my struggles aren’t so hidden. I’ll give you an example of how this can change and how this can also impact not only assumptions and biases, but also be detrimental to my health, care and safety. After major surgery and leaving the hospital, I had a complication and had to return to hospital through A&E. Hospital is one of the places that I feel the most disabled. It is the environment, the noise, the lights, the people, the smells. This can be for simple routine appointments too. Add to that the fear of the unknown and the excruciating pain that I was in. I was unable to communicate. When my husband wheeled me into the reception, on top of the pain from a genuine medical complication, my sensory sensitivities hit the top of the barometer. It was an onslaught of attack on my senses. All I could do was curl up in the wheelchair and cry “I can’t, I can’t, I can’t” over and over.
How I presented was judged by the doctors that assessed me. It is written in my notes that the plan of action was a “psychological referral”. My autistic processing and needs were not taken into consideration and this meant hours and hours passed before the actual physical problem was recognised. It was also my husband that made the connection and suggested it to a nurse of what might be wrong. The problem being not only a genuine medical issue but a common complication from the major surgery that I had two days previously.
I’ve given an extreme comparison for example here but there are also many other incidences that occur throughout my days as an autistic person. I cannot make a decision or answer a question in my own home if the TV is on and the radio in the other room, and I’m too cold and my trousers suddenly feel too tight. Last minute plan changes, being late for anything (me or other people). The list goes on.
The Horror of a High Functioning Label
When I was given my autism diagnosis, I was told, although they no longer give functioning labels, I would have been classed as “high functioning”. Ok thanks, why tell me that if it’s not a thing anymore?!
Functioning labels are problematic. Speaking from my own lived experience, the high functioning words only cemented the rhetoric that had plagued my brain my entire life. Why do I find simple things about being a person so difficult? Looking around at normal people and they all seemed to be able to get on with life. Why did I crash and burn when I pushed through and tried to exist like everyone else? If I’m high functioning, I am failing, still. I could appear high functioning on some days and other days I could not function at all. Mostly, those days of zero functioning are hidden. They rarely happen in public, so it’s not surprising to the outside world, it may be assumed that I don’t have any problems or challenges as an autistic person.
Spiky Profile
Why is it that on the one hand I can present as articulate, confident and well-grounded and it be assumed that I can’t be autistic or have very little needs. Then on the other have my autism out on show in the form of extreme distress to sensory stimuli and that be passed over as a psychological issue and my medical emergency be completely overshadowed. Unfortunately, I have heard many stories of how even children have been judged for seemingly “putting it on” with their autism in different situations. As if there is manipulation at play. When in fact it’s because needs and support for autistic people are dynamic. They fluctuate and change depending on the environment. Dr Luke Beardon and his brilliant equation that sums it up so simply:
AUTISM + ENVIRONMENT = OUTCOME
You cannot change the autism. If a different outcome is needed, it is the environment that needs to change. Environment includes not just the location but the light, noise, sound, smells, the people and the support.
What you don’t see when I present autism training is not only is it my special interest but that I am so unbelievably well supported by people who live, breathe and understand autism too. My needs are met. When my needs are not met, that is when these spikes change (see the visual on the left). My ability to communicate dissipates, sensory processing, emotional regulation, executive functioning, anxiety and so on. And this can fluctuate in a single day.
I’m not more autistic or less autistic, I am simply autistic and either being debilitated or supported by the environment.
Hannah Walker delivers Oliver McGowan mandatory training as one of our co-trainers with lived experience and she also delivers our Neurodivergent Women and Girls sessions. If you'd like to work with Hannah and find out more about booking these sessions for your team, explore our team license and training options or get started right away with our our e-learning.
The most hidden presentations are the most often missed. Our course Autism in Women & Girls (with a certificate of CPD hours) explores masking and why these needs go unrecognised - essential for anyone who wants to spot what others miss.
Not ready yet? Subscribe below for more.