[Feel free to share this blog and “Six common reactions during Autistic discovery” by citing: Farahar, C. (2021). Six common reactions during Autistic discovery. https://aucademy.co.uk/2022/01/20/six-common-reactions-during-autistic-discovery/ ]
I was asked in early 2021 to come up with a short lesson anyone – Autistic or their loved one – might need to know when they first look into Autistic experience. Given there is so much prejudiced and inaccurate information out there about Autistic experience: what are people looking for? What do they need? What would help them?
I did a bitesize live stream on Aucademy and asked the educator-learners in the comments “What were *you* looking for when you realised you were Autistic?”, and a number of educator-learners wanted to know, learn, and/or work through things such as:
“[I was] looking for an educator, someone to guide me through the feelings/emotions I was going through and to try to normalize those feelings.”
“Wanting to find out you’re not alone.”
“Checking for similarities.”
“To know that it’s not scary to be Autistic.”
“The correct information to be aware of and finding the community.”
“Find your folx.”
“[t]he different ways one might react to finding out they’re Autistic… I thought I would feel relieved, but that wasn’t my first reaction. I really struggled with all the different feelings and lack thereof that I went through.”
“How to communicate your needs to other people.”
Through the patterns and similarities of my discovery journey’s and that of the large number of Autistic people I’d supported, worked with, or were friends with I recognised a pattern and called it “Six common reactions during Autistic discovery”.
Most Autistic people we meet express experiences that relate to one or more of the six reactions outlined below, and we move through them, skip some, get stuck at some, and/or go back and forth while we progress on our life-long journey of Autistic self-discovery.
Whether discovered Autistic as a young person, in adulthood, or elderhood, or potentially revisiting the knowledge that you are Autistic some years after initial discovery, we all seem to experience one or more of five reactions: Denial; Anger; Bargaining; Depression; Acceptance (detailed further down the page).
It is always my hope that every Autistic person reaches the sixth experience – Embracing – in their discovery journey. We work very hard to help Autistic people we support get there, but part of reaching the sixth experience involves leaving behind the “autism community”, the “autism spectrum disorder” narrative, and the idea that you are a “person with autism”: to recognise yourself as a wholly Autistic person.
This means first knowing, finding, and connecting with another narrative, and other Autistic people so that you are not pathologised and isolated. This is very difficult to do if the dominant narrative, services, education, media, and so on pushes the “autism community” pathology narrative.
And so, come find us. Come find your fellow Autistic people. You are not alone. You most certainly are not broken. In the community you can gain support to work through your reactions of discovery, and hopefully come to embrace your au-somely Autistic self.
This model was created to help Autistic people feel heard and validated that whatever thoughts and feelings they have about discovering they’re Autistic, others have experienced them too. This isn’t about grieving one’s Autistic-ness, but holding space, without judgment, for those of us who may experience negative thinking and feelings about our discovery, and hoping to help people move toward embracing their Autistic selves. There are also those of us who experienced only positive thoughts and feelings about our discovery. And due to being complex human beings, there are those of us who have experienced both negative and positive responses.
All reactions, responses, thoughts, feelings, & stages when you discover you’re Autistic are valid. Keep in mind these reactions are not linear, & you may experience one, many, all of them, or none, & at different times, or experience them simultaneously
Six common reactions during Autistic discovery – the journey – Dr Chloe Farahar
- Denial (imposter syndrome; I don’t do *that* thing, the diagnosis/discovery is wrong)
- Anger (re-evaluating life and events; anger at the injustice of being invalidated for Autistic behaviours and experiences; perhaps angry at the autism)
- Bargaining (Fine, I’m “high functioning”; “I’m only a bit Autistic”)
- Depression (or is it Autistic burnout? – masking/shielding is exhausting; taking control of your mask/shield)
- Acceptance (OK, I *am* Autistic – but receiving mixed responses from other people when I disclose)
- BONUS: Embracing (your Autistic identity; having confidence in your Autistic identity, and connecting to the culture and community in Autistic spaces – allowing yourself to be authentically you, not a masked/shielded NT version)
- Learning your personal profile – sensory, social, emotional, communication, cognition
- Start to look into aphantasia; hyperphantasia; alexithymia; stimming; sensory needs and regulation – spoon management; masking/shielding; overwhelm; meltdown; shutdown; burnout; inertia; boundary setting (based on learnt needs); wellbeing needs of Autistic people generally and how they may relate to you (e.g. harmful stims; OCD or stimming; depression or burnout); etc.
- Acknowledging and accommodating your challenges so that you can focus on your strengths – advocating for yourself.
Image from: https://cokidswithbraininjury.com/parents/self-advocacy/
I hope you find “Six common reactions during Autistic discovery” useful. Let us know on Aucademy which experience you’re at and what has helped in your discovery journey.
[Feel free to share this blog and “Six common reactions during Autistic discovery” by citing: Farahar, C. (2021). Six common reactions during Autistic discovery. https://aucademy.co.uk/2022/01/20/six-common-reactions-during-autistic-discovery/ ]
[from “A rose by any other name would smell…of stigma (or, the psychologically important difference between being a “person with autism” or an Autistic person)”]
We also discussed the six common reactions in an Aucademy session, watchable below:
The six common reactions of Autistic discovery: Chloe & Annette educate Aucademy