“You don’t look autistic”

World Autism Acceptance Week takes place from 27 March to 2 April.  Autism is a lifelong developmental disability which affects how people communicate and interact with the world. There are approximately 700,000 autistic adults and children in the UK.

Dave Pooley is Neurodevelopmental Transitions Lead for the Adult Mental Health Service at Nottinghamshire Healthcare.  The service is just 6 months old however it has received just over 100 referrals to meet the mental health needs of adults with neurodevelopmental conditions within Adult Mental Health (AMH) services who are transitioning.

Dave shares his reflections of autism and how it affected him growing up.

“Well first off, to the many people over the years who have said “You don’t look autistic” to me, thank you for noticing (or not noticing) that but what does autism look like anyway? Autism in itself is only a relatively new diagnosis. The first time it appeared in diagnostic manuals was the1980s, it was only recognised as a spectrum of conditions with the next iteration. There is a lot of caricatured representation of it in the media or people who are coded as autistic but for every Rainman there’s also an Anthony Hopkins or Paddy Considine waiting in the background silently getting on with things but not necessarily knowing where to turn for that help.

“There are days when I appear ‘high functioning’ - dedicating energy to a social masking programme to try and avoid being rejected, incapable or different”

“Autism to me is a dynamic and changeable difference – there are days when I can appear “high functioning” however this means dedicating energy to running a social masking programme; deliberately making small talk, feeling false that I know I’m making a deliberate choice to do so rather than it being natural, making eye contact with a person but not too much eye contact to make it feel like I am staring or too little that I am not paying attention and avoiding talking about my interests unless absolutely relevant or are shared by the person I am talking to and it comes up organically. Also, suppressing stimming behaviour because its perceived as “abnormal”, feeling uncomfortable because I’ve smelt a whiff of gas from somewhere or can hear the ticking of a clock in the background. Having to waffle to look like I’m contributing until I can process what has been said and then having to keep on track with a conversation and judge the time to make the right concise response without the conversation moving to far forward from the moment where that’s still the subject or going into so much detail that it derails this discussion.

“All of this to ultimately to try to avoid being rejected, thought of as being incapable or being different, even though I am different from a neurological point of view, it is acknowledged as being a protected characteristic.”

Dave says it is exhausting try to keep the mask in place and carry out work but it’s also frequently confusing. However, his role as Neurodevelopmental Transitions Lead for AMH has allowed him to be more of his autistic self.

"Moving into my role as Neurodevelopmental Transitions Lead has allowed me to inject what I feel is more of my unmasked autistic self into my work life"

“Trying to keep that mask in place makes me question whether I am being me or whether I am being someone other people want me to be.  Moving into the role of Neurodevelopmental Transitions Lead for AMH has allowed me to inject what I feel is more of my unmasked autistic self into my work life to help advocate for those who aren’t as privileged of being in full time employment and experiencing mental distress or ill health.

“There are however positive benefits; I like to think that I have a strong sense of justice and compassion something which is always needed with the stigma that mental health illness holds.  Empathy, something long considered as something autistic people lack I believe I simply process in a different way; even though I struggle to naturally identify emotions in others fortunately I work in a job where people frequently tell me what emotions they are experiencing – the other components of my empathy recognition and reciprocation tend to overly compensate for this lack of identification which sometimes lead to being overwhelmed by emotion but that’s when utilising my hobbies and interests come in to help regulate it.

“I like to paint, and I find this a really soothing exercise, there is an element of mindfulness with painting and creating something but it can also sometimes prove to be frustrating when I lack the motivation to do this or I’ve perceived that I haven’t done a very good job at it.”

Dave was not diagnosed with autism until an adult at age 23 after completing his nurse training. He reflects on his early years as a child with no diagnosis.

“In my early years I can reflect on my experience with undiagnosed autism.  Whilst I was not diagnosed as a child or in my teenage years, I sometimes wonder would it have helped or been more of a hindrance at the time.  When we look at the current social model of disability of people being disabled by societies structures rather than being disabled by a condition, I suspect that if I had been diagnosed as a child due to the misperceptions around autistic people lacking empathy, I imagine that would not have been encouraged down the route of becoming a mental health nurse.

“Clinically we have also recently started talking about “Double Empathy” which acknowledges that because there are neurological differences between autistic and non-autistic people, and therefore those people with very different experiences of the world interact with one another, they will struggle to empathise with each other. It has also been asked of autistic people to contribute equally in partnership regarding to adjustments but given that to even get into the room the autistic person has to manage organisational, communication differences and sensory stimulus. From my perspective, the fact that they have gotten into the room for therapy is that contribution.

“Even with the best of intentions ”You don’t look autistic” doesn’t really feel like a compliment; autism as a lifelong “condition”, is intrinsically linked to my existence but having gone through that without having a diagnosis established was difficult as a child but even more difficult as an adult  when those support networks fall away – how are you supposed to make adjustments without knowing you have a difference to make adjustments for. I frequently use the example that if you put an Xbox game in a Playstation it won’t run, imagine waking up one day and being told that you are in fact running on a different operating system.

“I am autistic – ultimately, I can’t change that but perhaps others could start to recognise it?”

If you would like to know more about our Neurodevelopmental Transitions Service, you can contact the team at Neurodevelopmental.Transitions@nottshc.nhs.uk.

You can also find out more about our Neurodevelopmental Specialist Service (NeSS) on our website: www.nottinghamshirehealthcare.nhs.uk/neurodevelopmental-specialist-service