Altogether Autism autistic advocate Paula Jessop shares her personal thoughts as a person with ‘lived experience’ of asperger’s and calls for more radical acceptance of autism.
5 April 2018 – WE ARE ALL DIFFERENT. Even within the various autism communities of those with lived experience, there are differences of opinion relating to most matters pertaining to autism.
Many of my theories are based on what other adults on the spectrum discuss with me or ideas from reading insider blogs, books and articles, these thoughts are mine alone.
The opinions of just one person with lived experience and are not necessarily representative of all people on the spectrum.
I recently sat outside, night after night, in the stillness of the dark, pondering what ‘acceptance’ might be.
I’d heard it many times, what acceptance of autistic people meant. Acceptance of people with ‘lived experience’ of autism apparently means ‘accepting’ our unusual behaviours from a place of understanding our ‘disorder’.
This of course sounds wonderful, yet, I continued to sit in the stillness of a world asleep feeling distinctly uncomfortable. Something just doesn’t feel right. Somehow, I usually don’t tend to actually feel accepted by neurotypical people.
This pondering night after night was brought on after being told that it was not surprising someone within my world would not enjoy being around me because I am ‘so intense’.
What was I to expect when I was ‘so intense’ and behave how I do? These comments came from a person who ‘accepts’ me. I was left feeling like a bad person for being who I am.
Most especially because the intensity of my personality is largely created from my asperger’s and is something I cannot control. I wondered if people would say to a person who is upset about being excluded from certain situations because they are in a wheelchair and there are stairs to negotiate, “well what do you expect when you’re in a wheelchair”.
Most of my ‘aspie’ friends often discuss not feeling accepted either, even when their neurotypical friends and family say they are doing their utmost to ‘accept’ their unusual behaviours.
Being the pedantic ‘aspie’ I am, I dashed for my Oxford Concise Dictionary one night looking for the exact definition of ‘acceptance’. There I found the cause of my discomfort. One definition of acceptance was ‘to tolerate’. A light came on in my mind so to speak and the missing piece of the puzzle slotted into place. We want to feel more than tolerated. We want to feel liked. We want to feel more than ‘accepted’ despite our unusual quirky ways of being. We want to be liked for our unusual quirky, uncommon special ways of being.
After some discussion with other adults on the autism spectrum I did discover that others also feel ‘tolerated’ rather than ‘liked’ for who they are. Acceptance of autistic people is very often described in ways which equates, from our perspective, to tolerance. For many of us, we notice a distinct diﬀerence in the ‘acceptance’ we receive from our own kind, (other people on the spectrum) rather than those who are not on the spectrum. Most of the ‘aspie’ adults I interact with tell me of only ever feeling truly relaxed socially and accepted around other ‘aspies’.
Many of the people I speak with who didn’t meet others on the spectrum until adults report feeling genuinely ‘liked’ for themselves for the ‘first time’. Somehow the ‘acceptance’ from other ‘aspies’ transcends the ideas of what acceptance of us might look like to neurotypical people. Whilst neurotypical people tend to consider acceptance means learning to understand us and accepting these ‘unusual behaviours’ from a place of understanding… ‘aspies’ come from a place of ‘intuitive understanding’ of each other and ‘liking’ each other’s common ‘aspie’ traits.
I would like to discuss some of the reasons why we on the spectrum often do not feel accepted by those around us and why I think it’s important for those of us who are a part of the autism community to adopt a positive attitude of what I call ‘radical acceptance’ of autism. My concept of radical acceptance quite simply translates to ‘liking us’. Not accepting us despite the strange autistic behaviours.
Not accepting us by understanding these diﬃcult behaviours and for giving us for being a little diﬃcult. Radical acceptance is about actually liking us for the people we are. Liking us for the many wonderful, quirky, eccentric, unusual qualities we have, precisely because we are on the autism spectrum.
So what might radical acceptance look like more specifically?
- Radical acceptance begins with truly accepting that we are on the spectrum and not trying to ‘cure’ us and/or turn us into ‘normal’ people. It means basing therapies or interventions on what might help us to thrive in the world, not what will help others find us easier to be around by forcing us to behave in less autistic ways.
- Radical acceptance means understanding that autism, regardless of its form, is not bad and there is much which is enjoyable for us due to being autistic. It means not assuming our experience of the world is awful or all negative due to being on the autism spectrum.
Radical acceptance means not projecting expectations of us to learn to behave more ‘normally’ or like ‘neurotypical’ people. It means parents, professionals and autism organisations accepting our ‘insider voices’ and ‘insider knowledge of autism’ (as the true expect knowledge of autism).
- Radical acceptance means using positive language when discussing autism and not using terms such as ‘disorder’ which can make us feel hurt, oﬀended or bad about ourselves. It means autism organisations involving autistic people in the organisations and not merely having the odd ‘aspie’ as part of it in a ‘token’ manner.
- Radical acceptance means true consultation with us in matters relating to services and needs of us at the highest level politically. It means the media going beyond repeated. stories ‘about’ us from the perspective of parents.
- Radical acceptance means loving us and liking us for who we are. Loving our wonderful qualities and moving beyond ‘accepting us despite’ our ‘disordered’ way of being. We are people who in the words of a friend, ‘soak up external stimuli’ and if ‘external input’ is nothing but negative, then it is hard for us to motivate ourselves in the opposite direction’. We need those around us, be they our family or professionals or autism organisations or even the media, to avoid being negative about our autism. We need radical acceptance. We have the same basic human need as other people… to be liked and loved as we are.
- Paula Jessop is an autistic woman who advocates for ‘radical acceptance’ of autism as a valid type of neurological difference and supporting autistic people through strengths-based methods. She has been a member of a range of autism reference groups most recently including a Te Pou group aimed at formulating an autism skills framework for the disability workforce. Along with being a founding member of the Consumer Reference Group, Paula works with Altogether Autism in an advisory role as an autistic advocate.
This article first appeared in Altogether Autism Journal, Summer 2014.