PDA (Pathological Demand Avoidance - you could keep the acronym and call it persistent demand avoidance which I think would be more helpful) is a condition that is not universally recognised.  Judging by my experience of the turnout at the National Autistic Society conferences on the subject it is however actually experienced in many families

Autism and neurodiversity are contested fields with many different theories and experiences vying to be accepted as definitive.  Within that PDA seems to be currently the most disputed.  Ten years ago when I got a diagnosis ("on the Autistic Spectrum currently functioning at the level of residual Asperger's Syndrome") there seemed be quite frequent discussions on the radio questioning whether Asperger's Syndrome actually existed or if it was just an excuse used by inadequate parents for the misbehaviour of their children.

This strikes me as similar to the current attitude to PDA in that PDA is recognised by some practitioners in some areas and dismissed by other practitioners in other areas.  There is an added layer of complication in that some people who accept the existence of a condition dispute if it is part of the autistic constellation (I've used this term because I think it describes autism better than spectrum, which is often conceptualised as a 2D line going from "low functioning" to "high functioning"). Some autistic people argue that it is Rational Demand Avoidance, an assertion people who identify as having the condition strongly dispute.

So what exactly is PDA and how does it affect people?  Essentially it's an inability to comply with demands. It's generally considered to be part of the autism constellation that varies from other presentations of autism in the degree to which the person affected is unable to meet everyday demands.
 
PDA people often use social strategies to avoid meeting demands, so they appear superficially not to have the social difficulties usually associated with autism.   Most PDA people say the demand avoidance is driven by extreme anxiety, it’s not that they don't wish to do whatever is required its more that overwhelming anxiety drives them to avoid any demands.

This means that ways of interacting that are often thought to be helpful for autistic people, such as being very direct and having set rules and timetables, are unhelpful for PDA'ers.

My sense from thinking and reading about PDA and talking to people with the condition is that demands impinge on their sense of self.  The sense of agency is so shaky that it can feel as though complying with a demand obliterates the self. The level of threat felt results in any means possible being used to avoid the demand.

Autistic people have a tendency to extremes.  In relation to demands this means that some non-PDA autistic people are rule followers, happy in situations with clear rules they can adhere to. Others need to be given a reason for any demand, they will then evaluate if they think the demand is reasonable and only comply if they agree with it, such people are often rebels. Both of these extremes can lead to whistle-blowing.

For PDA people however any demand feels unpalatable.  This is not a pleasant position to find oneself in and it is made all the more difficult if one is then blamed and punished for being uncooperative.

As with other forms of neurodivergence I think the best way to address PDA is to listen to people who identify as having the condition and learning together what works best to enable them to fulfil their potential. I'm very grateful to some such people I 'met' on Twitter for commenting on drafts of this article.

A recent women’s hour piece on “Late Diagnosis Autism” began with the statement that “of course there are more men and boys with the conditions”.  To me there is no “of-course” about this, it’s a non-fact; what we know is that more men and boys are diagnosed with autism. However we also know that most autistic adults are undiagnosed and many are misdiagnosed. This mismatch between popular belief and reality reminds me of the account that lesbianism was never made illegal, unlike gay male sex, because Queen Victoria didn’t believe it existed.

My guess (and at the moment we don’t have the data to know the truth of this, we can only make informed guesses) is that there are probably as many autistic women as autistic men. It’s just that, as is often the case, the men have got all the attention.  

In the groups I run for autistic people there are generally more women than men (I suspect this is because autistic women, just like non-autistic women, tend to be more social than men). Autscape (an annual conference/retreat for autistic people) seems to attract equal numbers of men and women, and a quite a few non-binary and trans people as well.  

Jane Garvey presenting the women’s hour piece wondered if women are not being identified because “we are more adept at managing or masking the symptoms”. I am not sure that this is the case; I think that, just as non-autistic women have different behaviour profiles to non-autistic men, so autistic women have different behaviour profiles to autistic men.  
I conceptualise it like paint.  Say you have yellow paint (autism), if you add it to blue paint (men) you get green paint, however if you add it to red paint (women) you get orange paint.  Of course, if you assume that autism looks like green paint you won’t identify that orange paint is autism too.  However, if you are able to split colours and see what is really going on you might notice that there is as much yellow in the orange as there is in the green.

A way to address this imbalance would be to have as many autistic people as possible talk openly about autism. We need enough of us out there so that the experiences and attitudes of specific individuals are not taken to define autism more generally. This is particularly important because autism is so heterogeneous -  autistic people are outliers in all directions – and both autistic individuals and the medical practitioners currently invested with the power to grant diagnoses are susceptible to catching on to a particular trait of autism and thinking a person can’t be autistic without it.  I’ve lost count of the number of autistic women who were initially told by professionals that they could not be autistic for invalid reasons, such as “you looked me in the eye” or “we’re having a coherent conversation”.

I think that we need to be challenging all the stereotypes about autism including that there are more autistic men than autistic women.  If you are interested in learning more about how autism affects both women and men you might like to come to one of my training sessions or indeed if you are autistic yourself or wondering if you could be, you might like to listen to comments about Exploring Identifying as Autistic and get in touch if you're interested in coming along.  As ever I welcome comments and responses to this post.

I found out I was autistic when I was working as a consumer advisor and part of my job was to provide training about mental health from a “consumer” perspective (the concept that we consume mental health just shows how ridiculously far the capitalist concept of consumption and everything being reducible to a single value has gone). As a result of my discovery I developed training about autism for health professionals working in mental health.
 
I had previously qualified as an art psychotherapist so I knew that such trainings did not include autism but that did not stop me feeling an undercurrent of rage against therapists for their ignorance about neuro diversity.  I developed autism awareness sessions specifically for therapists because I was aware from my own experience, (and from the many stories I heard from others in the autistic community), how ineffective, and indeed damaging, therapy provided by therapists without knowledge of autism could be.  

It took Corrina Gordon Barnes, who ran an online course “From Passion to Profit”, repeatedly telling me that I needed to empathise with the people I wanted to educate to overcome my anger.  Actually the anger was both justified (I had spent a lot of time and money and experienced much misery consulting therapists who failed to help me) and unreasonable (they did their best with the information available to them at the time, it just turned out that the most relevant information was not available to them).

There is still a long way to go until autistic people can consult health professionals with reasonable confidence that they will be treated appropriately (and in this I include autistic people who are unaware that they are autistic). 

I think a question asked  by a therapist at a short talk I was giving recently illustrates this - she asked why I found my autism diagnosis helpful. I welcome questions and am happy to share my own life story in all my talks and trainings as personal experience is a valuable resource in understanding the impact of any condition. Most humans  naturally respond to stories, we need a coherent narrative that we can connect with.  So I answered the question from my experience and shared a recording of Charles Burns, a successful silhouette artist who tells how his life has dramatically improved since his diagnosis. This helped him to become aware that the ways he compensated for challenges where a sign of intelligence not stupidity.  Knowing this he was able to relish and hone his coping strategies and his self-esteem improved exponentially.  The questioner found the response helpful but I was unsettled by the question.  

I always stress in my education sessions that all autistic traits are human traits; it is the way they are configured and their intensity that defines autism.  The idea that understanding oneself and one’s motivations is empowering and enables reflection understanding and change is one of the foundation stones of psychotherapy.  It seemed to me this therapist’s question implied that this basic tenant of therapy, the idea that accessing a deeper knowledge of the self is useful might somehow not apply to autistic people.  Accepting an identity that includes autism reframes a person’s understanding of themselves.  Given that autistics are human I would have expected it to be self-evident to  therapists that autistic people would benefit from having an appropriate lens through which to examine their experience of life .

Therapy addresses personal issues faced by diverse individuals existing in varied and constantly changing contexts. I believe it is necessary for therapists to deeply understand the various forms of diversity, including neuro-diversity, if they want to help clients different from themselves.  

When I designed my “Exploring autism” sessions to enable therapists and other health professionals to understand autism I thought it was a no-brainer.  Autism was not included in the training therapists clearly need to know about autism so there should be no trouble interesting training institutions in some education sessions.  I missed the obvious point that before we seek out information we need to know it will be useful and relevant to us.  The myths about autism are still so prevalent, that many generalists are unaware this is something they need to know about, they believe they have no autistic clients or patients.  As you have read this far however presumably you realise that autism is something you or others need to know about, if you are interested in learning more do consider coming to one of my sessions.  If you have any questions or thoughts on what is written here please feel free to comment below, I’m always interested to read others' ideas.

So what do I think of the new drama series "The A word"?  I’ll start with the positives (going against type here). I think itw great that the absence of public discussions about the reality of autism is finally being redress. I found the acting convincing and the portrayal of the parents’ response to their son’s difference was realistic.  My main only gripe (minor in the scheme of things) would be the title. I'd rather autism was not headlined as the central plank of (rather than simply an integral part of) a drama about dysfunctional family life. (It seems tangentially relevant that there is a recent study showing that autistic mothers are as effective as non-autistic mothers for both autistic and non-autistic kids.)  

The story so far showed the impact that autism can have on a child’s behaviour and the proliferating effect of parents attempting to deny that there is anything different about the child.  The parents were shown starting to blame each other as the need to address the
reality of this difference became clearer together with the fact that they had seen it but not acknowledged it for years.

Discussion about the programme on Twitter had most people agreeing that it portrayed realistically both an autistic child and a family's and community's response to that child.  The following exchange was about the acutal "A word" demonstrates to me how even competent caring professionals can perpetuate stigma. 

Parent " but he's not autistic?" Doctor "that’s not how I'd describe anyone with autism".  It is hard to find a reason why you wouldn't call anyone "with autism" autistic, other than that the word is too terrible to mention.  This implies that autism is entirely negative and is not a helpful attitude.

The autistic boy, Joe, was only five and his difference was quite clear and noticed by others who didn’t invite him to parties. I was particularly struck by Simon Baron Cohen's tweet in response to this “Not inviting the kid with autism to your kid's birthday party is like having a sign saying 'Kids with disabilities not welcome' (retweeted 232 times and liked 266 times). I find this an inappropriate response to the story.  Joe was not particularly interested in other children and did not join in activities with them preferring to do his own thing. His birthday party seemed more of an ordeal than a pleasure for him, and caused stress to his family and others (his mother appearing to think it would be a good idea for him to be the centre of attention).  The idea that it is necessary to pretend that an autistic child is like a typically developing child by treating them like everyone else demonstrates disrespect for difference not inclusivity and appreciation of diversity.

I would suggest that we need to be fighting the stigma attached to difference and not ignoring or disregarding the difference itself.  (I’ll throw in a bit of self-promotion here - If you want to explore some of the differences generated by autism  come to my session Exploring Invisible Autism on April 20th)

I recently offered autism awareness training to the residents and staff of a therapeutic community.   As usual I began with an overview of autism and how it is seen in the community at large.  When I expressed my support of the current National Autistic Society campaign to speed up the diagnostic process one of the staff commented “ It is interesting that just as we in mental health, and especially here in this community, are moving away from diagnosis and labelling – because we think it’s important to treat people as individuals – you are advocating more diagnosis.”

At this point I need to clarify that what I think is important is the identification rather than diagnosis of autism.  However lack of a diagnosis can lead to the identification of autism not being accepted.   The neurological landscape is such that some neurological atypicalities (including autism) are regarded as diagnosable medical conditions rather than a natural part of human diversity.  This means that identification of autism is often only accepted if it is confirmed by an official diagnosis. I hope this will change but currently for many people the only way to be accepted as autistic, even within their own family and community, is to get validation from health professionals in the form of a diagnosis.

So I think it is useful for others in a therapeutic community to know if a resident is autistic.  This is for the same reason that others need to know what language individual residents speak; this seems so obvious it does not need stating. However spoken language is only one mode of communication. It is believed that up to 90% of communication is non-verbal, and one of the traits of autism is a difference in non-verbal communication. Without awareness of that difference, understanding is difficult.  Similarly various assumptions are made about “normal” development and what health would look like, but “normal development” for an autistic person is atypical and does not follow the usual trajectory.

If you consider life to be a journey, people who get lost on that journey might find themselves in a therapeutic community.  The ultimate aim of the therapeutic community is to enable people to continue their life journey in the larger community.
We use maps to plot our paths on journeys. We find our starting point and our destination and establish the best path from here to there. However it is impossible to do this if you don’t know where you’re starting from,  even if you know where you want to go.  You need to know where you are to start travelling in the right direction. You need to know where someone else is if you are to accompany them. If you don’t know someone is autistic it is hard to help them progress on their life journey as you won’t have a realistic idea of their starting point or their mode of travel.

I was talking to an occupational therapist about our respective work.  She asked me how I got into autism training and I explained that I became interested in autism and indeed passionate about spreading information about autism  due to discovering I was autistic five years ago. Her head jerked up, she looked straight at me and asked, well almost snapped, “How do you know you are autistic?  Who diagnosed you?”   I got the impression that if I was not able to answer these questions to her satisfaction, my autism would be considered invalid.  In that moment I was glad that I had an official diagnosis, so I could be believed and also bothered that it was needed for me to be believed.

The question that I asked myself is who should be believed about autism – people identifying as autistic or the disparate professionals empowered by the establishment to deliver diagnosis (which even their own peers or other groups of professionals often dispute)?

While it seems that there are people who are clearly autistic and others who are clearly not, there will always be some whose neurology is more difficult to call.  This does not negate the concept of autism, or the fact that autism can be an important part of a person’s identity. I would however argue that the definition of autism is cultural rather than scientific.
 
The fact that there is bi-sexuality and that some people are initially attracted to the members of one sex but then spend the lives with someone of the other sex does not invalidate the gay movement or the fact that homosexuality is a condition.  Homosexuality was removed from the DSM (the US psychiatric bible) as a result of pressure from the gay movement, society not the condition itself changed.   

In the brilliantly engaging book about maths for non-mathematicians “How not to be wrong - the Hidden Maths of Everyday Life” Jordan Ellenberg mentions how useful it was to think about how things should be defined rather than what they were.   If we look at autism from this point of view the issue is not what specific neurological differences underpin autism (nobody claims to have discovered this yet anyway) but who should define autism.  Should it be people who have studied psychology or medicine and looked at autism through that lens  or should it be people whose life experience resonates with the  current  view of autism and the autistic people they connect with? 

I find the insistence on the need for an “objective scientific” diagnosis when we have yet to identify biological markers somewhat bizarre (maybe it is my autistic literalism that says if you are saying it is more reliable and scientific, you need to evidence to support this).  It looks to me like a power grab by a group of people who have made careers in a field they see shifting away from their control.

Uta Frith, for example, previously suggested that Asperger’s Syndrome might better be regarded, not as “a very mild form of deficit” but as “compensatory learning in the presence of a severe deficit”.  This statement appears to acknowledge that it is not possible to calibrate the level of difference or difficulty experienced by an individual from the outside.  However last year she claimed in a radio debate  “Rethinking what is normal”  that many people are inappropriately claiming they “have autism” when actually they ‘just’ have social difficulties.  I fail to see how Uta Frith can legitiately claim for herself and other similar professionals the ability to know what is inside another person.  In the October 2014 issue of the Psychologist she says  “If the voices of people with autism are also heard they will give an important counterbalance to researchers’ and professionals’ pronouncements”   but apparently only if the professionals get to validate which voices count as truly autistic.

My belief is that if we start to think of autism as a way of describing a natural part of the human neuro-diverse constellation rather than a definition of a medical  disorder that needs to be diagnosed by a professional, we’ll be moving forwards.