Coming to terms with PDA … 

I’m really not sure about being labelled as ‘pathological’… but I’m happy I now have an explanation!

Taking it back a step….do labels matter? That age-old question has kept social media lit up, though perhaps not as much as the debate over whether self-diagnosis is OK or not! With PDA, it can be difficult to get (or to afford to get) a suitable diagnosis, so we won’t be exploring the question of self-diagnosis here.

The important question is actually what it means to each one of us 

Julia: It can be traumatic for those who diagnosed in their teenage years to be told they can’t help avoiding what is expected of them. From the inside looking out, it may feel uncertain and confusing. On the other hand, those who have grown up understanding that they have autism may feel ‘this is just the way I am’. An adult who is trying to make sense of things may feel huge relief that finally they understand why things have been so difficult.

There is no right way to feel, and indeed no need to use any ‘label’ except for when it helps you. If you are struggling to understand or process what you are feeling, then these thoughts from us PDA adults might help …

Riko: Labels are very important to me, they help me make sense of the world. I never thought I wasn’t normal but I couldn’t explain myself, so when I found out about PDA it was like being given an encyclopedia on myself, I finally understood who I am.

It didn’t take me long to come to terms with PDA, it was like coming home. It did take me longer to come to terms with being disabled though, it’s hard to accept you have difficulties when you are so determined not to rely on anyone for anything. I’m a proud person so to accept that I have limitations was hard, but learning about PDA has helped me be easier on myself and has stopped me pushing myself too far.

​I know not everyone needs or even wants a label, but I struggle to understand things without describing them and I do love my PDA label, I’m proud of it because it explains who I am so well. It’s helped me accept myself even more, but I do also admire those that don’t need a label to accept themselves for who they are. For me, PDA isn’t just something I have, like an attachment, PDA is who I am, that’s why I use identity first language. I am a PDAer, and proud of it.

Sally: For me, knowledge of my neurodivergency is very important.  I sought an autism diagnosis a few years ago when I was in my early forties after learning about female autism.  I found out about PDA after this diagnosis and joined a Facebook adult PDA group to learn more about PDA in adults. I now know I have a PDA profile of autism.

Self-awareness is very important to me.  I find it empowering as it helps me both to feel OK about my difficulties and to make achievable plans.

I have always struggled in life and felt bad that I couldn’t do things other people seemed to find easy.  I couldn’t hold down a job.  I couldn’t easily make friends.  I couldn’t even knuckle down and keep my home tidy.

I have always suffered acute anxiety (including social anxiety), found social interaction difficult, had intense interests and hypersensitivity.  Realising these traits are from my PDA and female presentation of autism has been a kind of magical, on going light bulb moment.

However, PDA has many positives too, such as having a rich imagination, being good with words and a drive for social justice.

For me PDA is majorly impacting and by no means a bed of roses, but the PDA adults I have come to know are fabulous and I am proud to be numbered among them.

Tony: Do labels matter? Yes and no, depending on what you consider a label. A diagnosis is not a label and should not be presented as such. Having a diagnosis and therefore a framework of how you function is extremely important in my opinion. Remaining undiagnosed can set someone up for a lifetime of failure and low self confidence. How the diagnosis is presented to the individual is also important. Saying “you have X diagnosis so you will never be able to do Y” is entirely unproductive; it is much better to present it as: “these areas may be much more difficult for you and this is why, and conversely, these areas you will likely excel at with greater ease than your peers”.

When it comes to labels such as ‘I am a person with autism’ vs ‘I am an autistic person’, there is a ridiculous amount of importance heaped onto what is the “correct” label. It simply boils down to personal preference.

I do like the part where Julia describes how having demands explained as unavoidable to a teenager can be overwhelming. The notion that those with an early diagnosis have had any less of a struggle in life minimises their experiences in life and is wrong. They simply struggle differently with some things compared to those of us left undiagnosed for so long. As someone with a late diagnosis it is easier to look at the situation from a “the grass is always greener on the other side” perspective, but at my age, life has shown me that is not always the case!