The Nourishment of Connection to Neurokin

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A middle-aged woman, with her head fully covered by a brown bear onesie hood with bear ears, sits facing away from the viewer and looks at a computer screen. The screen shows a Zoom meeting with six women, all laughing and drinking tea, as if part of a comfortable peer support group. The backgrounds of the Zoom participants are casual, featuring various neutral tones. The woman's room is cozy, warmly lit with yellow light, and includes homey touches like a green plant and a wooden bookshelf.

The Nourishment of Connection to Neurokin

Why Autistic Peer Support Groups are Vital for Wellbeing

By Melody Edwardson

As a late-diagnosed Autistic woman, peer Facebook groups and online peer support groups are a life saver for me. During my questioning phase, peer Facebook groups provided welcoming spaces to learn from others who had walked my path. All my deepest fears such as ‘Am I just making it all up? What if I aren’t actually autistic and just a deeply defective human?” were allayed by evidence they had been experienced by so many. 

I was overwhelmed by the generosity of people willing to answer mine and other’s questions and openly share their own experiences of both successes and cautionary tales. It was due to this, that I knew the importance of seeking a neuroaffirming psychologist to get a formal assessment and was able to compile a list of recommended, tried and tested clinicians to choose from.

Prior to my assessments, peer Facebook groups provided links to Autism assessments and checklists I could take to add to the myriad I had discovered myself. 

I also learnt that this obsession in taking assessments and deep diving into Autistic rabbit holes was a typical part of the process.

I recognise how privileged I am to have the resources for a formal assessment.  This is not the case for everyone, which is one reason why self-assessment is valid.  I believe this, and after spending a lifetime not trusting my own judgements, I needed the confirmation from an authoritative external source.

 

When I tentatively confided in my young adult daughter, I thought I might be Autistic, she displayed no surprise.  Instead, she reassuringly said ‘Of course you are’ adding the unexpected news that she had self-diagnosed years ago. I also had a flashback to comments made by her teachers about social skills differences which I dismissed as I had exactly the same issues as a child.

When I got the official verdict handed down that indeed I was Autistic and requiring substantial support, it was a huge relief and validation of my lifelong struggles. The first place I went to announce this new status was the peer Facebook groups who had provided encouragement and support. The genuine outpouring of joy and celebration with me was palpable. I finally felt like a zebra instead of a broken horse. A zebra with hundreds of zebras who had my back.

There is nothing like the feeling of camaraderie after a lifetime of sitting on the sidelines, not quite fitting in, looking like I should know things, but lacking the invisible rulebook to make it possible.

A middle-aged woman, with her head fully covered by a brown bear onesie hood with bear ears, sits facing away from the viewer and looks at a computer screen. The screen shows a Zoom meeting with six women, all laughing and drinking tea, as if part of a comfortable peer support group. The backgrounds of the Zoom participants are casual, featuring various neutral tones. The woman's room is cozy, warmly lit with yellow light, and includes homey touches like a green plant and a wooden bookshelf.

Now I am a member of an online Autistic peer support group. The beauty of an online peer support group is that I can join from my own safe space, that way I am calm and comfortable, and I can play with a fidget and even wear my bear onesie. There is no sickening perfume or ‘air freshener’, body odour or food smells to contend with; no loud or unexpected noises; no one sits or stands too close; no driving or public transport required.

Even better the peer support group is neuroaffirming. Practically, this means clear expectations for the session provided prior in writing including start and finish times allowing time to prepare points to talk about and being able to ration energy throughout.  All choices for communication are valid, like cameras on or off, talking or typing in the chat or just listening and being allowed to leave to go to the bathroom or get a drink at any time. People can choose a pseudonym if they wish and pronouns are respected.

I also voluntarily cofacilitate 2 other peer support groups for late diagnosed women and non-binary. Neurokindred & Empower Autism. It is an honour to be able to create a welcoming environment; a space where other people can experience the sense of belonging that I now know is possible. This is a way to pay it forward and I equally get just as much out of facilitating as participating. There’s nothing quite like when you are relaying an experience or telling a story and you can see people nodding, shaking their head or rolling their eyes in the right spot. 

So many times people apologise for talking too long only to be met with, ‘not at all please continue this is super interesting’

Support groups are not just a safe space to be with our neurokindred, they also help us reframe our current and previous experiences.  This is vital as Maya Angelou says in order to “forgive yourself for not knowing what you didn’t know before you learned it”. Growing up, I learnt the correct way to deal with distressing experiences was ‘ if you didn’t talk about it , it never happened’. I find Brene Brown’s view that ‘shame dies when stories are told in safe places’ more nourishing and conductive to wellbeing and self-acceptance.

The maxim that words create worlds has long been a favourite of mine. Robin Wall Kimmerer says that ‘finding the words is another step in learning to see’. As a late, late diagnosed autistic woman, new words and ideas provide a clearer lens through which to view not just my life, but the essence of who I am. It has allowed me to retire the shit-coloured lens for good.

 

I love Stevie Long Howson’s description of Autistic identity as finally discovering that you have been looking through a stained glass window and that all the shapes and colours have meaning. This allows you to understand why you see things the way you do and why you were misunderstood by some and best of all allows you to connect with others.

A growing awareness of an Autistic lexicon that confers dignity to experience has facilitated my sense-making efforts. Knowing that my individual, frustrated internal silent screams and habitual bewilderment and inexplicable ways of being are not only common they also have names is comfortingly validating. Words I previously used to describe myself included weird, alien, freak, failure, disappointment, and loser are struck from my vocabulary, now that my whole being has been contextualised.

Words influence how we feel and think and behave. Words for me have created a world of belonging after over half a century of standing on the sidelines trying to crack the code for being ‘normal’.

Here are a few of my favourites that are often discussed in support groups that help us understand and be kinder to ourselves.

 

Spiky Profile: This explains why even though I can do somethings really well like organise a conference or provide an imptomptu overview of mental health policy changes in the last 20 years, I also bend keys because I struggle to open doors and can’t keep track of my personal items and have difficulty knowing when it is my turn to talk in a group. This is also the reason why when I don’t understand something and ask for clarification people erroneously assume that given my high capabilities in one area, I am equally capable at everything. Therefore, they think I do understand so they become angry because they ‘know’ I am being deliberately disingenuous, lazy, or challenging their authority when I insist, I really want to know what they mean.

 

Double empathy: This term explains why Autistics understand Autistic ways of expressing empathy such as sharing a similar story to show kindness and to make the other person feel less alone. Neurotypical however see this as rude and trying to steal the limelight and make it all about us. Neurotypicals understand Neurotypicals, like they are from the same culture. This concept was a revelation to me and helped me realise why the harder I tried to fit in or make friends, the more I inadvertently pushed people away.

Orthogonal thinking: This term refers to how Autistics see connections that others don’t. This is why a conversation can trigger an association that triggers a song lyric that takes it in all sorts of deliciously interesting directions, kind of like the red string that police put on the board when trying to solve crimes. I love these conversations but apparently these can be seen as annoying and going off on irrelevant tangent, the very notion!

 

Once you are introduced to some of these words and ideas, you will have a different appreciation of yourself, and you will recognise these in other people. KJ Wiseheart jokingly referred to the process by which once we know we are Autistic that we can spot our neurokin as ‘diagnosis by peer review’ which I love. If any of this resonates with you, I look forward to seeing you in an Autistic-led peer support group soon.

Note from the Author

I am Melody Edwardson. I am an Autistic Mental Health Specialist with a background in community work, positive psychology & counselling. I run Wellbeing Wise in Sunnybank, Brisbane, where I am passionate about supporting people in discovering ways to thrive and create a life worth living. I see clients aged 16 and older, both face-to-face and via Zoom.

 

I am committed to wellbeing. I work part-time at Wellbeing Wise, which allows me to engage in activities that bring meaning and purpose to my life. This includes walking in the forest every day to connect with the natural world, being part of Free Mum Hugs Australia to celebrate the LGBTIQA+ community, mentoring students at my local high school, serving on the board of Support Groups Queensland and and supporting neurokin at Neurokindred and Empower Autism.

 

My favourite wellbeing booster is spending quality time with my beautiful, blended family, which includes four children aged 21, 21, 17, and 15, and our beloved staffy-cross sharpei, Rocky. My key learnings about mental health and how to create a thriving, positive future have come from the people I have worked with and their families.

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