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Prejudice and discrimination facing the BAME neurodivergent community

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Free PDA interview with Emma Dalmayne


Q 1) What should people be aware of when considering the BAME neurodivergent community? Emma: They should be aware that we have been judged for our skin colour as well as our stims and difficulties with communication. They should take into account the fact that we may come from backgrounds that were and are not understanding or accepting of autism. Discrimination is something we are used too. Q 2) A recent article stated that Black and Latino children are often overlooked when it comes to autism. Is this true in your experience? Do you believe this issue affects BAME neurodivergent adults as well? Emma: Yes, it is common. Parents may be reluctant to have a child assessed and diagnosed as in many cultures, autism is seen as a curse or a disgrace on the family. They may rubbish any suggestion of autism and say it is a label, that their children are simply stubborn or wilful as this is what they have been told by family and friends. Churches for instance m…

Multiple opinions on the name Pathological Demand Avoidance

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Both Emily Wilding and Sally Cat of Free PDA have written on, and collated opinions on, the name for our neurotype, known as Pathological Demand Avoidance or PDA for short. Below you will find Sally Cat's article, containing ideas from a number of PDAers, including Emily. Then below, an article written by Emily to add some thoughts. Right at the bottom, we have added a few links to other articles we have produced that may be helpful. From Sally Cat:"Pathological demand avoidance" (PDA) is the name of a life-long neurological condition.

The term was coined by Professor Elizabeth Newson, who first identified the condition in the 1980s. In addition to the trait of pathological demand avoidance, PDA entails: High anxiety, control-need, use of social strategies, sociability, mood swings, comfort in fantasy & role-play and obsessive, often people-focused behaviour (link). 
And also: Disregard for social hierarchy, masking, love of novelty, dislike of routine, intolerance of un…

3 decades!

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I feel a sense of pride going on here for the Free PDA community.

I continue with my thoughts about self identity and wonder whether this is a common theme in the childhood years for us? My "problems" of insecurity started from about the age of 12, got bad in my early 20s and really bad from my late 20s.  I think it wasn't until I hit my 40s that I suddenly became comfortable with myself. 3 flipping decades of worry, insecurity, shame and anxiety. Some say that this is a common thing in this decade as people tends to care less about what others think of them. Hmmmm I am not sure. It wasn't until I had my ADHD recognised that I truly feel at ease with myself and realised that all that overanalysing was sure to a hyperactive brain and an intolerance of uncertainty. Fuck! Decades! 3 decades to work that out!!!! 30 fucking years! haha!!!

I won't share all my thoughts here because I am at serious risk of oversharing but self identity and overthinking, overanalysing …

The emotional impact of dismissal on the adult PDA community

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The adult PDA community is bombarded with dismissal from multiple directions:

Official bodies and diagnosticians who, if they acknowledge PDA at all, exclude adults. Here is an exampleParents speaking over adult PDA voices in designated PDA support groups, and assuming that “PDA support” is for parents onlyAcademics such as Professor Jonathan Green, who argues that PDA is a falsehood propagated by parents misled by social media hype (link)Autistic theorists, such as Damian Milton (who argues that PDAers are autistics deemed pathological because they misfit society), and Richard Woods (who sees PDAers as gullible victims of what he terms "the autism industry"). Both views are critiqued here. Adult autistics arguing that PDA has no validity as an autism spectrum subtype. For example, I found this comment published on a public blog, “the main reason I reject PDA however (and I’m someone who formally self-identified as such) is that it divides autistic people in exactly the same …
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I want to speak about PDA and empathy.

There is an ideology in social culture that PDA creates challenging, violent children who, with or without intent, can be 'abusive' both to other humans and to animals. My son, on past occasions, has been labelled by people who don't know him as uncaring towards other children, or malicious.

Anyone with a close family member, or friend, who has PDA will no doubt have first-hand experience, have read posts in support groups, or read articles on the internet discussing violent or 'challenging' behaviour caused by their high anxiety. I want to completely switch that image around.

This week, very sadly,  my son and I had to have one of our pet rats put to sleep. He cried lots of tears. It would be easy to say that he was just thinking of himself, but no, he wasn't, although of course he was going to really, really miss her.

He babied and cuddled her often whilst she was unwell, and he held her in his arms very gently, telling …

Identity

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If I identify as PDA,  and some 'diagnosed' don’t like it.  I just say – get on ya way I could not care one bit
But reality is, that I do mind Because it makes me less inclined To be the me I'm wired to be
I mask in class I mask on task I’m holding it all in  You can’t see how my avoidance  Is taking toll within
It is obvious to me  That I have ADHD But as I am yet to get the proof and until that comes, does that mean I'm just a goof
These things are me, my identity it’s not yours to question that is my suggestion.
Rejection sensitivity, creates a fear in me That I’m not your cup of tea A part of me couldn’t care less Another part feels intense distress 
So, when my identity is discussed You really must Include me You seee… You don’t know my inner world Like I do not know yours Our Neurodiversity may be similar, by definition, but personalities shape us too to make our composition
The group is for others like me that could not pay the fee to get that certification of proof to prove you are not a spoof
that…

The importance of undiagnosed adult PDAer voices

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A disturbing stance is emerging within the PDA community that undiagnosed adult PDAer voices are invalid. I am writing this blog post, with passion, to counter this negativity, which I see as discriminatorily ableist and destructive.

What is PDA?
PDA, which stands for pathological demand avoidance, is a neurotype that is classed as an autism spectrum condition because it entails social communication differences & rigid thinking. In addition to this, PDA also involves strong control-need; anxiety; intolerance of uncertainty; tendency towards fantasy & role-play; disregard for hierarchy & rules; obsessive interests often focused on people; ‘Jekyll and Hyde’ emotions, and impulsiveness.




My personal journey

I first learned of PDA in 2015, eighteen months after gaining an adult autism diagnosis. At this time, Googling “PDA” returned results about difficult children, and nothing at all about adults. I resorted to searching Facebook and found just one group dedicated to adult PDA: …