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The Circuitous Path to Positive Autistic Identity

Having spent the last few years consciously processing my neurodivergent identity and many more before that, doing so unconsciously.

Examining layers of internalised ableism, invalidation trauma and imposter syndrome.

At times it has felt like free falling without a parachute.

This all-consuming path has been exhausting.

As someone whose life has been shaped by an inherent fascination with the psychology of human beings,

Who ended up studying Psychology as an undergraduate and postgraduate,

training as a therapist and working with many Autistic young people and adults,

I did not realise that I was Autistic too.

My own self-identification only began when I became curious about whether my son might be Autistic.

From here, from this place of instinct,
connection and resonance, a significant processing journey began to unfold.

There is something quite transformational about loving your child with every unconditional fibre of your being.

About seeing their radiant neurodivergent beauty and being in awe of their authentic presence.

And then recognising how much you have learnt to edit yourself, to mask and fawn.

Once I connected with this, I felt fired up and committed to doing my own work.

There is nothing quite like an analytical Autistic Mama bear on a mission!

After doing lots of reading and self-exploration, I sought further reference inside of the Autistic community.

What I found far exceeded information and knowledge.

What I experienced was refuge and further layers of resonance.

There were times as I listened to Autistic advocates speak, that I found myself moved me to tears.

How had I not connected with more of this before?

Had I been too armoured?

Too guided by textbooks?

Too afraid?

Had the boundaries of my own social context made ‘difference’ so fiercely off limits?

Each time I wanted to flee and hide, I held onto the knowledge that my own self-acceptance and self-love would impact my son’s development of his.

With over 40 years to re-process, this endeavour was not going to be a once and done kind of thing.

As I considered pursuing a diagnosis, I wrestled with my conflicting thoughts and feelings around this.

I did, and do, see self-identification as equally valid and important to respect.

Inside me though, there was a strong need for confirmation.

For some of us, and for me, this need was tied to old wounds.

The many times that I had been overwhelmed and really struggling, but had been described as ‘too much’, ‘too sensitive’ and ‘too intense’.

Invalidation trauma can undermine our own truth and our confidence to stand in it.

Not being known, understood, and accepted just as we are, can mean we compromise pieces of our self, in order to fit in.

Ultimately, I felt that I needed to seek confirmation formally.

Having decided to book an assessment, I was sent an enormous amount of pre assessment paperwork.

Once completed, my answers totalled 20,000 words.

The process of writing was cathartic for me.

The word count also spoke to how sure I was, underneath my conditioned uncertainty.

In the lead up to the appointment, the wait became increasingly agonising and my anxiety grew.

I connected with friends who had already been through this process to get me through.

Their beautiful validation and the ways in which they embody positive Autistic identity kept me going, until the day of the assessment.

At the end of the process and after a long interview,

I was indeed, identified as Autistic.

We shared a gold themed family celebration and cake to match.

My son’s reaction when I told him was the most special part for me.

He threw his arms around me, squeezed me tight before getting up and punching the air with joy.

“Yes! You’re Autistic too Mommy!”.

Celebrating was not just about me; it was also about our boy and others still unidentified in our family.

Part of me wants to end this piece here.

To conclude that having my Autistic identity confirmed, has been an entirely positive and affirming experience.

But this would not be true or fair.

I believe that the messy realities of this experience, pre and post diagnosis, need to be spoken about more.

I doubt many people leave the assessment process, as it currently stands, free from conflicting feelings.

I was lucky enough to be assessed by a warm, gentle and kind person, for whom I have a great deal of respect.

The experience of being diagnosed within the boundaries of the DSM though, was incredibly tough.

My Autism assessment report spoke to the pre-determined ways in which historical Autism ‘experts’, and the authors of the DSM, have decided that I, and we, are less.

Less than the ‘neurotypical’ majority; a subjective concept, without scientific basis.

After writing and speaking to my Autistic identity, in meaningful and contextualised ways across my pre-assessment paperwork, and in the assessment interview,

I was floored to receive a report so dominated by the DSM criteria.

In preparing myself for the assessment and throwing myself so fully into sharing all that felt important and relevant, I had not prepared myself for how this would feel.

In being identified as Autistic, I expected to feel some relief.

I expected to feel that my struggles had been honoured.

I expected to feel seen.

At times in the interview, I did feel these things.

But in the aftermath that followed, starting with the report, I felt dishonoured and flooded with conflicting emotions.

Even though I had critically reflected on the DSM criteria for Autism.

Even though I was clear about the pathology paradigm.

And even though I knew that the assessor would be working to these criteria in order to assess me,

I had not fully appreciated how I would feel reading my life experiences reduced to a checklist.

To a list of ways that I was not as worthy, as some arbitrarily and narrowly defined construct of normalcy.

We all deserve something better than this.

We are not a list of symptoms.

We are not disordered or broken.

We are beautiful, complex and deep feeling beings,

Who experience the world in our own unique ways.

We deserve to be honoured for all that we are.

We need access to a system that instead of asking; what is wrong with us?

Asks; what has been difficult for you and what support might make it less so?

A system that validates the understandable and adaptive ways we have survived.

The DSM de-contextualises our difficulties and lets systems off the hook.

The time for a different way and a different system, is so long overdue.

We need to be able to explore our Autistic identity in ways that do not break our hearts.

We need to hear and read the confirmation in such a way that frees us all to punch the air and say;

“Yes I am Autistic too!”

A warm welcome awaits all over on my Facebook page:

https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/

By Jessica Matthews

Neurodivergent Mother, Independent Researcher, and Writer. Background in Psychology and Counselling with postgraduate training in Clinical Psychology (BSc Hons Psychology and Trained Integrative Counsellor). Passionate about Neurodivergent Identity, Non-neuronormative Narratives and Polyvagal Informed Parenting.

One reply on “The Circuitous Path to Positive Autistic Identity”

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