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 about Autism 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 Mother to a wonderful boy who is a great many things, amongst them he is inspiring, funny, chatty, strong, beautiful, determined, resourceful, creative and Autistic. He is also demand avoidant in a way that is quite different to his peers. This is known as PDA, a particular behavioural profile that some Autistic people have, one that is particularly misunderstood.

As a Mother and 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 raise awareness about Autism by organisations such as The National Autistic Society, The PDA Society, individual charities and individual writers and bloggers and researchers, particularly authors and advocates 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 for Autism, I felt bombarded by medical descriptions such as “disorder”, needing “treatment” and being “impaired”. For me these descriptions just did not describe my son and I experienced them as offensive and hurtful.

I started to actively seek different language, less medical narratives and more embracing ones. I wanted to be able to connect with an understanding of Autism that felt more authentically descriptive of our boy’s amazing gifts as well as his challenges. After all Autism is not something you have, it is not an illness, it is pervasive; it affects every part of a person. 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 and values neurodiversity. 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 that my son is Autistic and in learning how I can be a better parent to him and his unique set of needs.

Who Am I?

I am a 40 something, full time Mom, remaining anonymous in order to protect my son’s online identity.

As well as looking after my boy full time I am also a writer on a mission to share good quality information about Neurodiversity 😊.

I have a BSc Hons degree in Psychology and as a Postgraduate I studied for 3 years to gain my Qualification in Integrative Counselling.

I worked between the NHS, Action for Children and Relate over a 10 year + period. I loved my work and I often miss it.

These days though, I am very lucky to be the Mother of an incredible boy who makes every day different, beautiful and challenging; probably in equal measure. I do my best to stay relatively sane and be the best Mom I can be, whilst fighting for the Education that he needs and has a legal right to.

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:

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.


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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