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A Post Diagnosis Letter (From a child’s perspective)

I know that you see me

I know that you love me

But I’m scared of this room

This process

All these questions.

These lists and benchmarks

They mean nothing to me.

What do they mean to you?

Will we leave here

With an ‘other’ me?

Will you see me as less?

Will you want me to be ‘changed’?

Will you sign for them to mould and shape me

Into someone I’m not?

Or, will you take my hand and take me home

Knowing more, but not seeing less?

Please don’t stop seeing me

Don’t change your perception

And belief in who I can be.

For with the right environment

Unconditional love and support

I can be all the things you saw before.

I am all the things you saw before.

Except now we have a name for my neurology

A title for my identity

And a culture to which I belong.

Please don’t respond with sadness

At knowing who I am.

Please don’t leave here with all those words in your head.

Please see the medical terms for what they are

And leave them at the door.

Let us spend our time

Understanding my essence

Understanding my needs

Understanding what supports me to thrive.

For all that you saw before

Is still right here beside you

Loving you and believing you

Every word and description you use.

Please celebrate me

Celebrate Neurodiversity

And teach me how to know my worth.

Teach me how to be proud of all that I am.

For in your unconditional and embracing arms

I can be free, to be all of the things I’m meant to be.

💛

The Facebook Page supporting this blog is : https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/

By changingthenarrativeaboutautism

Author: Integrative Counsellor, BSc (Hons) Psychology.

Neurodivergent Mother, passionate about the acceptance and respectful treatment of neurodivergent children and adults.

My personal experience, relationship and connection with my son, provides me with a depth of insight into PDA. Our family's lived experience and love for our son, has driven me to research and write about PDA.

In addition to this lived experience, which I am very gradually making sense of, my professional background supports my ability to critically reflect and make sense of some of the strengths and difficulties we face.

My career started in 1999, when I graduated with a 2:1 BSc Hons Psychology degree. As a graduate I worked in a residential care setting for Adults with Autism and Learning Disabilities. I went onto complete a further three years Integrative Counselling training and then later; two years clinical psychology training. My clinical experience includes working for the NHS, Action for Children and Relate:

For the NHS, I worked in a University Hospital Psychology and Counselling service, a Community Mental Health Team, a Parenting Team and a Community Neuro Rehabilitation Team.

For Action for Children, I worked in a Leaving Care Team, and in a residential care setting for Looked After Children.

For Relate, I worked in the young people's service providing therapy to children facing a range of difficulties from trauma, loss and separation to depression, anxiety and self-harm.

I first developed my interest in Neuroscience as an undergraduate. I connected more fully with this during my time working as a trainee alongside a very inspiring Neuropsychologist in a Community Neuro Rehabilitation team. My passion for neuroscience became even more valuable to me, when I became a parent.

The Polyvagal Theory, in particular, has been central in helping me to develop a deeper understanding of PDA.

This led me to hypothesise and write about the relationship between neuroception and PDA in my article “Highly Sensitive Neuroception May Be at The Heart of PDA”.

I hope you find this site helpful and I thank you for your participation and feedback.

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