[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.”
I discussed this with Annette, and through the patterns and similarities of our own discovery journey’s and that of the large number of Autistic people we’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
It was really helpful to read your article. I have been interested in the model developed from Black Racial Identity Development Model called The Minority Identity Development Model. I mention these because I worked with autistic Black young people and am a parent of two autistic children of African Caribbean descent.
There were wider issues of the intersection of racism and ableism that we experienced as a family which led to me writing an article on the issues in my family and in my work.
If you’re Autistic yourself it would be great to consider you for a session on Aucademy – details here: https://aucademy.co.uk/become-an-aucademy-educator/
I spoke with a colleague about the overlap of autistic identity and racial identity development recently too. Very cool to see someone else mention this!
I would love to read your article if you have a link to it? Thanks!
Absolutely superb as usual.
Absolutely golden resource and piece of work. Thank you for your spoons so we all can eat with food for thought.
It makes sense that the 5 stages to autistic discovery are the same as those of grief because I truly believe when we discover we are autistic, we grieve: who we thought we were, the injustice we’ve experienced because of who we actually are, the misconceptions that are plastered to autism, the missed opportunities we may have experienced (past or future), the failed relationships, and the time that it takes to get to know ourselves all over again with this new lens to the point of loving ourselves. These stages are not linear, as you’ve mentioned, and can take a long time.
I know for myself, I lived in anger for a good amount of time. And then that anger flipped into depression and that lasted a long time too. Sometimes I slip into both still. But what’s great is that added 6th stage, Embracing. I’ve finally found the right people to support me to embrace all that I authentically am and I do feel like I’m finally learning to love myself for who I am, through this lens of autism. And after dispelling all the misconceptions about autism (it’s taken some time, but I’m grateful for platforms such as this and other online communities for the education), I finally can celebrate all the uniquely weirdness that I am. I can embrace my quirks and strengths to make a difference in this lifetime. Thank you for sharing this article!