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Changing The Narrative About Autism and PDA

The focus of my blog and page is to join hands with those who, like me, want much more understanding and acceptance of Autistic neurology in mainstream narratives.

My hope is that by bringing together current literature, articles, blogs and information that reflect the diversity and breadth within the Autistic population; that we may challenge the many stereotypes that exist about Autism, as well as challenge our own misconceptions and understanding.

The aim is to provide a page that is rich with many and varied narratives about Autism, as well as to shine particular light on the lesser known profile of Autism; PDA (Pathological Demand Avoidance).

My main drive in creating this page is as a Neuodivergent Mother, to a wonderful boy who is inspiring, funny, chatty, strong, beautiful, determined, resourceful, creative and Autistic with a PDA profile; a subtype of Autism that is particularly misunderstood.

As a family our experience of negotiating the complexities of the healthcare system through assessment and diagnosis and the EHCP and SEND system feels challenging, as does our experience of day to day conversations about Autism.

It is my hope that this page will add to the discourse about Autistic identity and PDA in a way that is positive and supportive. I want my son to inherit a world that has a deeper understanding of Autistic experiences, without being so saturated by inaccuarate and unhelpful stereotypes about Autism.

Much is being done to initiate acceptance around Autism and PDA by organisations such as the PDA Society and individual charities, writers, bloggers and researchers, particularly those who are Autistic themselves. But the task is huge. Historical narratives and medical narratives about Autism still largely dominate in a way that is incredibly unhelpful.

When my son was being assessed, I felt bombarded by medical descriptions such as “disorder”, needing “treatment” and being “impaired”. For me these descriptions did not describe my son and I experienced them as offensive, hurtful and triggering.

I started to actively seek different language, less medical narratives and more embracing and accepting ones. I wanted to be able to connect with an understanding of Autism that felt more authentically descriptive of our boy’s amazing strengths as well as his challenges. I want others to accept that being Autistic is an identity, one that shapes the way a person experiences the world, communicates, thinks, feels, moves and learns.

Narratives are powerful because language is emotive, and the words we use, have such a deep impact.

My son’s beauty and the way he shines can never be represented by terms such as disorder, developmental disability or neurological condition.

And neither can your Autistic son’s beauty, or your daughter’s, grandson’s, granddaughter’s, niece’s or nephew’s.

Every Autistic person deserves to live in a world that understands, accepts and values Neurodivergent identity. We need to be ready and able to go beyond awareness and actually celebrate every individual’s experience of being. And whilst every individual should be celebrated, their difficulties also need to be understood.

Autism is complex and despite the shared characteristics, every autistic person needs to be supported according to their unique set of strengths and difficulties.

A fundamental shift still needs to happen where there is more widespread understanding of the range of difficulties Autistic people face, including those difficulties that can be largely invisible.

I feel I have a responsibility to actively join hands with those already striving to bring about change. It would be amazing to hear more mainstream conversations about Autism that are truly open, respectful and informed. It feels like its slowly happening, but its early days still.

The process of reading, researching and writing about Autism and PDA has been a really important part of my journey in processing both my son’s and my own Neurodivergent identities and in learning how I can be a better parent.

I passionately believe that by challenging common misconceptions and contributing well versed narratives about Autism and PDA, that change can happen one conversation at a time.

I hope you can join me on this journey and follow on Facebook too:

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

By Jessica Matthews

Neurodivegent 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.

3 replies on “Changing The Narrative About Autism and PDA”

Wonderful to hear such positivity, around a part of the spectrum that can be presented in such a dismal disheartening way.

Our young people deserve recognition for the uniqueness and shown the understanding and acceptance we give to the rest of society.

Looking forward to reading and sharing more of your thoughts.

Liked by 1 person

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