As usual, I have been contemplating what it means to be autistic, whilst simultaneously thinking about undertaking some research. I want to find out what others think about being autistic and I thought of this survey question, “Do you have an ‘all or nothing’ personality?”. I have always behaved in an all or nothing way, in everything I do, for me, no middle ground exists. Our society appears to want everyone to be in the ‘middle’, ‘average’ and ‘normal’. Even the advice we receive or impart aims for the middle, ‘everything in moderation’ and the importance of creating balance in your life, balance is in the middle too, right? Is this why autistic people are stigmatised because we can be extreme?
I Googled ‘all or nothing personality’. One of the top results was ‘All or Nothing or ‘Black and White’ thinking and Depression”. Have we been pathologised? Are autistic people viewed as the epitome of a depressed being according to neurotypical society?
In medical circles, the Patient Health Questionnaire-9 (PHQ-9) and General Anxiety Disorder-7 (GAD-7) are considered simple, valid (?) measures of depressive and anxiety symptoms that may facilitate clinical assessment. These assesment tools are recommended by NICE to assess if a person has depression and anxiety and identifies the severity of symptoms. In everyday life, I score mildly to moderately depressed and this is probably the reason I attracted a diagnosis of Dysthymia (a continuous long-term (chronic) form of depression). I completed the PHQ-9 and GAD-7 recently and scored severely depressed and moderately anxious. I was not depressed, but the reason for my high score was that I was experiencing autistic burnout.
I listened to a Radio 4 drama called Me, Myself I about lonliness and depression and If you are so inclined, you can listen to it here , it is very good. The excerpt below reminds me of how it feels to be depressed. Sarah is asked by her husband, Martin, what is wrong, and this is her reply.
“I don’t know, I feel like I’m disappearing, I don’t know who I am or what I’m doing. I can’t explain it to myself. I see life going on around me and I’m stuck in this glass box looking out watching it all go on without me, like I’m separate from everything. I feel ashamed even talking about it, I don’t know how to make things right because I don’t know what is wrong”.
I know what depression feels like and at the time of writing this blog, I know I was not depressed.
Back to my musings of what it means to be autistic, and another question for my survey occurs to me, “have you or are you frequently told that something is wrong with you?”. To answer this, I need to take a detour and talk about an autistic’s perspective of right and wrong. There are different ways to be wrong and they range from being pedantic and correcting people, (I prefer facts and so will correct an inexactitude, but only if I am knowledgeable in this field) to how I act and what I say and do.
I have been told many times by different people that there is something wrong with me, such as you are all or nothing and that’s not good. It is not always literal either, it can be things that suggest that something is wrong with me, such as “you are too opinionated”, “you are a ‘know it all’”, “you are domineering and controlling” and that I am purposefully argumentative. Ironically, I am also often accused of always needing to be right. Many autistic people have similar experiences and Laina Eartharcher has written an excellent blog entitled Do asperger’s / autistic people always have to be right?.
My therapist told me I have clinical perfectionism and I thought I was born this way, but perhaps not. When you think and behave in ways that society has pathologised, that is to say your behaviour is considered to be outside the cultural norm and therefore wrong, the perceived wisdom to overcome these issues is to ‘try harder’ and to develop strategies to overcome your ‘wrongness’. Dr Neil Hammond, in ‘Developing Psychological Interventions for adults with high functioning autism spectrum disorders’, talks about addressing ‘all or nothing’ thinking by exploration and provision of an alternative perspective. In other words, all or nothing is wrong. This constant striving to not be wrong, to always do better, has created clinical perfectionism, a learned behaviour that is detrimental to my health and wellbeing. Perhaps therefore we mask and as a result, we meltdown, shutdown, and burnout. I do not have the energy for this anymore. I accept me for who I am, I believe that there is a place for people that have an ‘all or nothing’ personality type and I am beginning to celebrate me for who I am, I hope society will too.
One last thought occurs to me, is the reason that so many Autistic people think they are depressed and anxious is because they are told they are? Maybe it is time to develop a tool that measures anxiety and depression based on the cultural norms of the neurodiverse population.
Disclaimer: Whenever something in the articles refers to people with autism, it means many autistic people, and not all. The views, thoughts and opinions expressed in the text belong solely to the author, and not necessarily to the author’s employer, organisation, committee or other group or individual.