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.

Linda told me about how her autistic daughter Fiona experienced social anxiety and difficulty talking with people outside of a formal situation*.  Fiona had noticed how people gravitate to Linda and tell her their problems, and said "but you're real, you're not pretending" Linda said "I didn't like to tell her that sometimes I am pretending".

To me this exposed the difference between a false self and the necessity sometimes to create an appearance that differs from your internal experience.  Linda does sometimes pretend because, like everyone, she is not always interested in other people's stories; she sometimes wants to curl up in a corner with a glass of wine rather than support a friend in need.  However, her overview is that the long term is more important than the short term; she does want to support that friend, she'd just rather not do it now when the friend happens to need it.  Part of friendship is overriding your own wishes when the needs of your friend are greater than your need.  So yes Linda is pretending, but it isn't an overarching pretence, just an awareness that sometimes she needs to override aspects of her complex self to behave in a way that is congruent with her values.

The sort of pretending that many autistic people feel obliged to do in order to "pass" is of another order, it is more like acting - mimicking a whole set of responses that have no connection to their inner world but that they believe are "normal". These pretences are consciously thought out responses that express nothing of the individual. This is quite different to the responses Linda referred to which meant putting forward an aspect of herself that did not at that moment coincide with her preferences.

The need to pretend to be someone else, someone you believe will be perceived as normal, is something experienced by many autistic people, especially before we are diagnosed and know why we feel so different.  Almost 20 years ago Lianne Holiday Wiley encapsulated this idea in the title of her book "Pretending to be Normal".  More recently autism diagnosticians have explained their failure to diagnose autistic women, thus skewing the prevalence figures and perpetuating the tendency to see autism as male, by suggesting that women "mask" autistic traits. (This could also be explained by the blinkers worn by diagnosticians when exercising their prerogative to gatekeep autism).

As I mentioned in my last blog post there has been a social media campaign inviting people to #TakeOffTheMask.  I feel ambivalent about this because, as I describe above, everybody has some level of social mask. This is necessary to get along with others; to compromise and contextualise your own wants and needs in relation to your values and the wants and needs of others in your community.

Unfortunately, most people in the autistic community have come across someone who has been discriminated against as a result of disclosing they are autistic.  I even know people who have lost their jobs because of this.   While it is beneficial to be authentic and I guess the desire to promote authenticity and acceptance of diversity was behind the #TakeOffTheMask, campaign I think we need to recognise that it is necessary for everyone - autistic or not - to “mask” sometimes.  It is not always safe or appropriate for autistic people to remove their mask, especially if they have been wearing it for so long they are not sure what lies underneath.  Re-evaluating a life through a new lens, be it an autism lens or conversion to a new religion or ideology requires thoughtful work, and is not something that is usually best achieved by casting aside all that has gone before.  I suggest we need to understand and deconstruct our masks rather than hastily remove them.

*As always in my blog posts I use real situations but disguise the identities of the individuals concerned

Autistic people hate small talk, is something I've heard repeated countless times by both autistic and non-autistic people

However in settings such as AutAngels peer support groups and Autscape, which are wholly or predominantly autistic, you’ll see lots of people chatting away (as well as people standing awkwardly in corners). I've long puzzled over seeing autistic people who swear they hate small talk having conversations that sound to me like small talk in autistic settings.
Looking up small talk on the internet I find it defined as “polite conversation about unimportant or uncontroversial matters, especially as engaged in on social occasions” and “an informal type of discourse that does not cover any functional topics of conversation or any transactions that need to be addressed.” Wikipdedia's article on Small Talk  explains that “In spite of seeming to have little useful purpose, small talk is a bonding ritual and a strategy for managing interpersonal distance. It serves many functions in helping to define the relationships between friends, colleagues, and new acquaintances.”  

These definitions make clear in different ways that the content of small talk is not the point.   The point is a desire to connect.   For most autistic people however, the point of a conversation is the content.   If the content is engaging they will connect, content leads to connection. It seems that for many NT’s (neurotypical or non-autistic people) connection comes before content, so they connect with contentless conversation and if that works they will move on to sharing meaningful content.

As well as establishing connection in contrasting ways it seems that the average NT probably wants more superficial connection with other humans than the average autistic person, and they signal the desire to connect by sharing inconsequential chatter.  

Most of us autistics want language to be used to mean what it says not as a backdrop to an invisible social signal. So when NT’s use random thoughts to try connect with another person it can work well with fellow NT’s but tends to fail with autistics as we need meaningful content and can get stressed by a feeling that we are expected to share meaningless trivialities (added to which as we have no idea what is acceptable to say and what could trigger an adverse reaction, we feel that we’re being invited into a minefield). Before we speak we need to either be interested in the subject we are speaking about or the person we are talking to.  

So while in an autistic setting (or any setting where they feel safe) many autistic people will ask after someone else’s family or discuss travel arrangements, because they are genuinely interested and connected. This can give the impression of being small talk, but in fact its meaningful  because of the prior connection of the participants. The interaction does not create the connection, it happens because of it.

My contention is that NTs will talk about inconsequential matters to create connection while autistics will only do so when they already feel connected.  Social skills courses which teach people that they should talk about the weather are teaching masking not connection.

If we repeat stock phrases because we've been taught that's what you're supposed to do it’s likely to feel unnatural, appear stilted and require lots of effort and energy leaving us feeling depleted and unable to actually listen and respond to the other person’s reply. Masking causes disconnection rather than connection so shouldn’t really be considered a social skill. (There is currently a social media campaign urging people to #Take the Mask Off).

Discovering that I am autistic led me to better understand what was going on socially for me and for others and enabled me to make choices based on this.  I now find it much easier to engage in casual conversation because I’ve found a compromise, I do it my way, I don’t, as I used to, try and immediately dive into deep discussions, but I do connect by talking lightly about everyday matters that interest me but are unlikely to evoke deep feelings.

I thought the recent documentary on Channel 4 "Am I Autistic" was much better in terms of its attitude to autism  than previous generalist programmes on the subject. The main presenters where “out” autistic women (I think many people working in the autism field are unaware or closeted autistics) and the general attitude to autism although still regarding it as a somewhat unusual and exotic condition acknowledged the positives as well as the challenges. However, my default tends to be to notice flaws, so I'll focus on some of the interesting contradictions that surfaced for me when watching it.

The programme showcased Jo and JP, who had been aware that they were different all their lives (a sure pointer towards autism in my book) and who were wondering if they were autistic.  There were two autistic women presenters, Georgia and Sam, and a non-autistic narrator, Anna.

I found it paradoxical that Anna, who explained her interest in autism as due to  having an autistic nephew, could say categorically after hearing about Jo's difficulty with small talk "I have trouble with small talk and I'm not autistic" while at the same time claiming that for Jo, the only way to know for sure if she was autistic was to get a diagnosis.

Surely, if the only person who can tell if you are autistic is a clinician, it would also require  a clinician to tell if you're not autistic. If self-identification as autistic is not regarded as definitive until confirmed by a clinician, then the same should apply to being non-autistic (especially perhaps if you have autistic family members since we know that autism runs in families).

We also know all autistic traits are human traits and there is no currently measurable biological marker for autism so essentially a diagnosis is the opinion of  a clinician based on behaviour, self-reporting and family reporting. This makes it very susceptible to bias.

This programme, while supporting the diagnosis by Simon Baron Cohen (the originator of the discredited male brain theory of autism) as the arbiter of whether Jo and JP were autistic, also argued that more males were diagnosed because "females camouflage" their autism.  Thus, whilst they acknowledged that autistic females are under-diagnosed, this was attributed not to the lack of expertise of diagnosticians, but rather blamed on autistic women, because we don’t present like autistic men.

For people who have always felt different in some way, identifying as autistic can be the gateway to self-understanding and finding the courage to be authentic rather than constantly trying to fit a mould of “normality”.   Failing to get a diagnosis because you have managed to hide your differences or because you are female, can be a devastating blow*.  

My concern is that people who "fail" the diagnostic test feel that they are “frauds” living in a no-man’s land; unable to function typically, but denied the possibility to claim and explore a condition which explains their difficulties.

Autism awareness is not evenly distributed throughout society and therefore many autistic people are without access to information that could transform their lives. In this situation formal diagnosis can be helpful - the artist Sonia Boue told me that her autism diagnosis was a positive turning point because it helped her leverage her strengths and recognise some of her challenges were due to her brain wiring rather than personal weaknesses.  However just because something can be helpful does not make it optimal.

The idea that someone is only autistic if they are certified as such by a clinician is equivalent to saying you are only gay if a psychiatrist says so, that your own desires are not what determine your sexuality. In common with many other autistic people I believe that autism needs to be de-medicalised. Like homo-sexuality autism is a natural part of human diversity and needs to be recognised as such and identified by individuals, society and the medical profession rather listed in a psychiatric manual and diagnosed.

Of course autism can be identified by clinicians, in fact they need to be trained to recognise it because it affects the the way treatments for mental and physical conditions are best administered.  This doesn’t mean they are appropriate gatekeepers to autistic identity.   There is an autistic community, and like other communities we need to control our boundaries rather than have them defined by people with agendas and sensibilities that we might not feel aligned with.

* See “Adults’ Experience of an Asperger Syndrome Diagnosis Analysis of Its Emotional Meaning and Effect on Participants’ Lives”  Trevor Powell DClinPsych, Louise Acker, BSc 2015 http://journals.sagepub.com/doi/abs/10.1177/1088357615588516

I love this cartoon by the brilliant Langdon Bryce (there are lots more on his FB page the Autcast).  It deftly illustrates the way for many autistic adults one of the biggest barriers we face is a culture that regards autism solely as a disability. I think it is more accurate to regard it as a neurology that brings differences, some of which are positive and some of which can be (but are not necessarily) disabling.  In this context I often repeat the quote attributed to Einstein “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”   

The stereotypes about autism result both in autism often being unidentified because the autistic person doesn’t fit them, and also in people not daring to suggest to others that they or a family member might be autistic as this is likely to be regarded as a negative label.  It is often said that there are four times as many autistic men as autistic women, although it is finally being generally recognised that in fact women are underdiagnosed.  

It seems to me that autistic people often choose, or find themselves with, autistic partners and this can happen even if neither party is aware of autism.   Sometimes the realisation of autism comes once their child has been identified or diagnosed as autistic and the parent recognises that they are very similar to the child.  Due to the negative views  of autism that Langdon Bryce encapsulates in his cartoon, coming to this conclusion can be slow and painful.  Sometimes people are willing to accept that a family member might be autistic but are much slower to recognise the autism in themselves. (It’s interesting that it’s acceptable to state categorically “I’m not autistic” without any diagnostic process, whilst some people think that only an accredited diagnostitian can tell if someone is autistic.)

Some time ago (before I was working in the autism field)  I was talking to a neighbour,  Martin, about his thirteen year old daughter  Emma, whom I’d known since she was two.  I knew that Emma was depressed and had been seeing the school counsellor.  Martin told me how worried he and his wife were as things seemed to be getting worse, Emma was no longer seeing her friends and becoming increasingly isolated. She was feeling completely hopeless and indeed appeared suicidal. I wondered if in fact Emma had become depressed because she was isolated rather than the other way round.  Autistic people often develop intellectually more quickly than we develop emotionally and socially.  The social landscape changes rapidly for teenagers,  and autistic young people often feel alientated and no longer able to connect  with others in their age group in this new social environment.

I mentioned that Emma’s developmental trajectory - being intellectually precocious but then in adolecence starting to struggle socially-was something I’d seen in many autistic women and asked if it had occurred to Martin that this might be part of the picture.  It hadn’t. Martin thanked me for my concern and asked me to email him some information about autism in girls and women.  When I next saw him three weeks later I asked him if he’d got the information I’d sent.  He told me he’d received it but hadn’t had time to look at it.  If my child was suicidal I would be desperate to access any information that could be relevant and helpful. I was suprised and saddened that autism must have felt so aversive to Martin that he couldn’t consider it might apply to his daughter . (Later on his wife came  to a training session about autism and appeared to accept that there was autism in the family. She took her daughter to a psychologist with a good understanding of autism and  Emma recovered.)

Recently, I  spent some time talking with a self-identified neurotypical woman about her autistic partner.  She seemed concerned to understand his behaviour better and seemed happy with my responses to her situation and my suggested explanations for her husband’s behaviour.  However  when the possibility that she too may be autistic was raised,  she told me how impossible that was as she was very emotional and that’s why she struggles so much  to understand how her husband  couldn’t get what came so easily to her.  The suggestion that she might also be autistic was unacceptable to her and our conversations came to an end.   I was sad about this for both of us; for her because I didn't see how her narrative could improve her relationship with her autistic husband and children, and for me because I worried that I'd unintentionally colluded with the idea that the problem in the relationship was located in her husbands neurology.

Over time,  I’ve come across many couples where one partner is diagnosed or identified as autistic and the other partner also seems to be autistic but is not aware of this.  Even (or perhaps especially) people who work in the field are vulnerable to this misreading.  A case in point is the author, speaker and consultant Sarah Hendrickx of Hendrickx Associates who  wrote a book about being a neurotypical person in a relationship with a man with Asperger's Syndrome before realising that she is herself autistic.  Despite working in the autism field Sarah was totally unaware for years of her own autism. Ten years on from writing as a neurotypical partner, Sarah is now a proud out autistic woman. When I asked her if she minded being mentioned in this post as someone who feels her relationship is successful and endures because both she and Keith are autistic, she responded  that she was happy to be quoted  “it is entirely the case that we remain deliriously happy and deeply in love after 13+ years because we are both autistic in combination with our knowledge and tolerance of what we both need. Having a good autistic partner for me is like being able to breathe out in a world where I often feel like I'm holding my breath and know that someone can see all of who I am and will not judge or disapprove.”

I've heard the idea that autistic people hate small talk,  repeated countless times by both autistic and non-autistic people.

However in settings such AutAngel's peer support groups as and Autscape which are wholly or predominantly autistic you’ll see lots of people chatting away (as well as people standing awkwardly in corners). I've long puzzled over seeing autistic people who swear they hate small talk having conversations that sound to me like small talk in autistic settings.
Looking up small talk on the internet I find it defined as “polite conversation about unimportant or uncontroversial matters, especially as engaged in on social occasions” and “an informal type of discourse that does not cover any functional topics of conversation or any transactions that need to be addressed.” Wikipdedia's article on Small Talk explains that “In spite of seeming to have little useful purpose, small talk is a bonding ritual and a strategy for managing interpersonal distance. It serves many functions in helping to define the relationships between friends, colleagues, and new acquaintances..” 

These definitions make clear in different ways that the content of small talk is not the point.  The point is a desire to connect.  For most autistic people however, the point of a conversation is the content.  If the content is engaging they will connect, content leads to connection. It seems that for many NT’s (neuro-typical or non-autistic people) connection comes before content, so they connect with contentless conversation and if that works they will move on to sharing meaningful content.

As well as establishing connection in contrasting ways it seems that the average NT probably wants more superficial connection with other humans than the average autistic person, and they signal the desire to connect by sharing inconsequential information. 

Most of us autistics want language to be used to mean what it says not as a backdrop to an invisible social signal. So when NT’s use random thoughts to try connect with another person it can work well with fellow NT’s but tends to fail with autistics as we need meaningful content and can get stressed by a feeling that we are expected to share meaningless trivialities (added to which we have no idea what is acceptable to say and what could trigger an adverse reaction, we feel that we’re being invited into a minefield). Before we speak we need to either be interested in the subject we are speaking about or the person we are talking to. 

So while in an autistic setting (or any setting where they feel safe) many autistic people will ask after someone else’s family or discuss how travel arrangements, because they are genuinely interested and connected. This can give the impression of being small talk, but in fact its meaningful because of the prior connection of the participants. The conversation does not create the connection it happens because of it.

My contention is that NTs will talk about inconsequential matters to create connection while autistics will only do so when they already feel connected.  Social skills courses which teach people that should talk about the weather are teaching masking not connection.

If we repeat stock phrases because we've been taught that's what you're supposed to do it’s likely to feel unnatural, appear stilted and require lots of effort and energy leaving us feeling depleted and unable to actually listen and respond to the other person’s reply. Masking causes disconnection rather than connection so shouldn’t really be considered a social skill. (There is currently a social media campaign urging people to #TaketheMaskOff)

Discovering that I am autistic led me to better understand what was going on socially for me and for others and enabled me to make choices based on this.  I now find it much easier to engage in casual conversation because I’ve found a compromise.  I do it my way, I don’t as I used to try and immediately dive into deep discussions, but I do often manage to connect by talking lightly about everyday matters that interest me but are unlikely to evoke deep feelings.

My last blog post outlined some things which I think are unhelpful in relation to autism and social skills. I will now take the glass half full approach, and discuss what I think is helpful.
For me the single most helpful thing was going to Autscape where autistic people are in the majority. It was the first time I was in a situation with a level playing field socially.  I am not the only one who has felt transformed by this experience.  The confidence I gained at Autscape has enabled me to deal with a much wider variety of social situations and to build connections within the larger community.  I found that understanding how and why I am atypical made it much easier to accept myself as I am and to address my various challenges.  This understanding also enabled me to feel comfortable explaining my differences to others.  

Interestingly the book I think best addresses difficulties talking with others was not written specifically for autistics.  It is entitled “How you can talk to anyone in every situation” by Emma Sargent and Tim Fearon.  Of course there are very few people, autistic or otherwise, who could achieve this – but this is as good a guide as I’ve seen in terms of helping people improve their ability to connect socially.  The fact that is written for a general audience is a plus, as it doesn’t condescend or assume that there is an inherent deficit that needs addressing.

I think the point here is that the social differences and difficulties experienced by autistic people are not only about specific social skills, they are also about contextualising complex communications in real time.  This is why a lot of autistic people with first class degrees in psychology are hopeless in social situations.  Expecting theoretical training to enable people to perform socially is like expecting a male obstetrician to give birth.

Social skills training and social stories (which like ABA are touted everywhere as a brilliant thing for autism, without this being verified by rigorous research) assume that there will be a predictable context in which to use those skills.  This is manifestly not the case.  In real life the aim of social skill is to facilitate actual connection and connection requires more than one party.  It makes sense if connection is not happening to look at both parties and try and find a compromise.

Exhibiting “social skills” without being honest or true to yourself is not relating to others or learning social skills, rather it is acting.

Social interaction by its nature requires more than one participant This brings me to the radical idea that maybe the non-autistic participants in social interaction with an autistic person should share responsibility for finding a way of relating that works.   Non- autistic people often don’t have to think about their social style they just assume it is neutral, but as Gary Younge says in his book ‘Who we are – and should it matter in the 21st century?’  “Those who feel they are without identity do not see the need to meet people halfway and thereby fail to recognize that everyone else is doing all the travelling”.

Damian Milton calls this the “double empathy problem”  .  He suggests that the social difficulties of autistic people are caused by contrasting ways of relating rather than an autistic deficit.  Whatever the complex mechanisms underlying social intelligence, I think we can safely say that this is something that needs to be further explored and that non- autistic people training autistic people to pretend to be non-autistic is unlikely to be the best solution we can come up with.

If you are autistic or think you might be and  would like to explore this territory in more detail you might be interested in my “Exploring Identifying as Autistic” programme which aims to help people accept themselves and communicate authentically.

I’ll finish with some lovely lines from T.S Eliot’s Four Quartets that I think are relevant here.
“For last year's words belong to last year's language
And next year's words await another voice.”

.  
One thing that autistic people have in common is a social difference (of course we humans are all different in that we are each unique, what I mean here is that autistic people interact with others atypically).  I think this is because autistics are unable to pick up non-verbal and other communication that is below the level of consciousness.  Like much to do with autism, the cause of this social difference (which everyone across the contentious field of autism agrees exists) is not clear.  While I believe that the lack of social radar equipment to detect social signals is one of the main reasons for social atypicality there are other factors that also contribute to varying degrees.  
It is clear to me that issues with “theory of mind” (the very non-literal term used for the intuitive awareness that the contents or other people’s minds are different from the contents of our own mind) and what psychologists tend to call mentalising can impact severely on the ability to relate successfully to other human beings.

Autistic people are often distressed by problems mixing with others and making friends and therefore jump at the chance to learn social skills which they hope will solve these problems.   Despite the popularity of social skills training the limited research that exists suggests that such training is not very effective in real life* .  I find this totally unsurprising. Nobody has suggested giving deaf people hearing training or blind people sight training. As social skills require an ability to pick up social signals that is absent in autistic people, training is unlikely to be effective because, despite high motivation, the social radar equipment is just not there.

What I suspect happens is that the social skills sessions themselves are successful in that the people attending get to have a nice time which includes limited socialising with each other. They learn what to do in specific scenarios, they learn the steps to go through, and they have enjoyed it so they give the training good feedback.  Everybody is happy, outcome measures get nice ticks but nothing changes in the outside world, the lessons that seemed so relevant in class turn out to be irrelevant in the real world because the real world does not use the same scripts that were taught in class.

I regard this lack of “social radar” as being somewhat analogous to tone deafness in music (I am tone deaf).  I used to love singing, but unfortunately I was exposed in front of the class at age 7 as the one who was singing incorrectly and since then I have been unable to sing in public. What is particularly humiliating about this was that I was doing my best and as far as I am concerned I was singing in tune, but everyone else could hear that in fact I wasn’t.  Most autistics have had the experience with trying to engage socially, trying to get along with people, doing what we believe to be the right thing, but discovering that others think we are doing something wrong.  We tend to get rejected without ever finding out what exactly we did wrong (or we realise ourselves a week later when the time to rectify it has passed). We are just not able to “tune in” in real time to the social context we find ourselves in.  
The underlying issue is that the point of interacting socially is to connect with other people, and you don’t do this merely by exhibiting a set of skills, you do this by being your authentic self and being open to another human being.  Too many autistic people have been taught supposed “skills” which leave them in the words of Lianne Holiday Wiley “Pretending to be Normal”.  As Valerie Gaus points out in her book “Living Well on the Spectrum”  appearing “normal” does not make a person likeable and being “weird” does not necessarily make a person unlikeable.  Learning a set of rules might be necessary but it is certainly not sufficient to enable you to connect in real time with real people.

*See for example http://link.springer.com/article/10.1007/BF02179376


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.

A core quality of autism is an atypical way of connecting with other human beings.  It is often (mistakenly) believed that autistic people lack empathy.  We are also said to lack TOM, which is not a person but an acronym for Theory of Mind.  However, I think often the use of the term Theory of Mind in the context of autism is misleading as what is usually being referred to is intuition and not theory.

The attribute called TOM is the ability to understand what thoughts another person is likely to be thinking.  For this to affect your actual interactions with other people you have to be able to discern and respond to their thoughts in real time. Having an excellent ability to work out what someone might be thinking in theory or in retrospect wouldn’t help your relationships with people if you are unable to do it while you are engaging with them.  

Saying that difficulty with relating to others is due to lack of theory of mind is therefore not particularly helpful, as someone can have a brilliant theoretical understanding of how minds work, but this is useless to them in practise if they don’t  have access to that understanding when it matters most, that is when actually interacting with other people.

My guess is that most obstetricians are male, and have a better understanding of the processes involved in childbirth than most mothers, all of whom are female. Despite the fact that male obstetricians have the best theory of childbirth, they will be trumped every time at actually producing babies by women who may have absolutely no theory of childbirth, but possess the equipment to produce babies.

Similarly autistic people might have what would be called in everyday English theory of mind, however without the equipment to intuit what other people are thinking this theory does not enable actual real time typical social interaction.

It seems to me that a disproportionate number of autistic people study psychology, however this study being theoretical doesn’t really help them with actually getting on with people. Many non- autistic people who have never formally studied psychology have an intuitive grasp of what another person might be thinking and use that to socialise.

However, the idea that autistic people lack “Theory of Mind” is often a barrier to people believing that they or another might be autistic, because the relevant person is extraordinarily adept at explaining motivation, despite not getting along easily with other humans.

So while I do think that autistic people tend to lack the ability to intuit the thoughts of others, I know for sure that we don’t lack empathy and many of us are superb at explaining psychological theory!

I offer a short talks about autism that are followed by a Q & A session.  I try to be relevant to the specific audience. However I always try to convey how helpful it is to society at large, as well as to autistic people, if autism is considered an ordinary part of human neuro-diversity, a diversity which by its nature enriches and expands human experience and possibilities.

Recently I discovered I had failed in this when in the final minutes of the session addressing support workers I was asked, or rather told, "The idea of autism as a signpost is all very well, but it isn't really helpful to label people.  My friend has a thirty something son and he was diagnosed with autism but she has never told him, she just puts in place what is necessary to help him deal with it. Surely that is the kindest way, there is no benefit in dividing people up and labelling them, he's just a human being with needs"

This statement illustrates the damage caused by the perception of autism as a negative label rather than a simply a useful descriptive term.  An analogy would be that if you had a child who was extra sensitive to the sun, who got sunburn whenever the sun came out, it would not make sense to just coat them with sunscreen, without explaining to them why you were doing it. If you did not tell  them  about their sensitivity  to the sun and the consequent need to be careful and to apply sunscreen when they went out they would only be protected when you are around.  This would not enable them to understand and look after themselves and achieve independence.

Of course there is no stigma attached to having extra- sensitive skin, so it is unlikely that this information would be kept from a child. The issue here is not naming (rebranded in the comment above as "labelling") the condition, it is the stigma attached to that condition.  I have recently seen several examples of how this stigma affects ordinary autistic people and their families.

87  year old Edith came all the way from Australia to see me because she read my article about autism and therapy and thinks I will understand her. Edith is proud that someone she met in a café didn’t think she was autistic.  

Samantha is a mental health worker, she has an autistic daughter, she tells me she has not yet watched “The A word” because it might upset her husband who has not accepted he has an autistic child.

Emma consulted me about her son who has a Master’s degree, but now sits in his room with various ailments he won’t see a doctor about.  Emma has long suspected her son might “have Asperger’s” but never mentioned it to him “because he was managing”

What these very different people have in common is that the stigma attached to autism is preventing them from engaging in ways that could enable an autistic person to flourish.
I think stigma often (but not always) the most significant factor getting in the way of autistic people having the opportunity to flourish.  A simple thing anyone can do to help autistic people  is address this stigma, and accept autism as an ordinary part of daily life rather than an extraordinary label that needs to be kept hidden.

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)

Autism and women seems to be one of the bright new shiny things (that actually if you were looking were always there) currently being picked up by the media.  The plus side of this is that we (autistic women) are becoming more visible in our various guises.  This enables more women to recognise their autism, and parents of autistic girls to consider the possibility that perhaps their daughter might be autistic rather than deliberately difficult and awkward.  
It is sometimes suggested there should be special criteria for diagnosing women.  I disagree with this as I would argue that the underlying traits of autism are the same they just manifest differently in different people (and sex is a major difference between people).  Think about colour mixing, if you add yellow to blue you get green, which is very different to the purple you get if you add yellow to red.  However the yellow is still yellow, you just have to be aware that it looks different depending on how much is present and what colour it is being mixed with.

I don’t think medical practitioners should be the gatekeepers for autism any more than they should be the gatekeepers of sexuality. (I believe autism like homosexuality should be removed from diagnostic manuals and re categorised as a naturally occurring part of human diversity.)  Like homosexuality autism can only now be identified by observing behaviour, and this is necessarily contextual and dependant on the knowledge and sensitivity of the observer. Diagnostians have been known to refuse a diagnosis of autism on various spurious grounds my own list includes “he/she looked me in the eye”  (this to me is like telling someone they are not gay because they have flirted with someone of the opposite sex – it demonstrates a very restrictive and stereotyped understanding of the condition as well as ignoring the fact that people are able to behave in ways that do not reflect their inner feelings). My colleague at AutAngel, David Mery found a more extensive list gathered on the Everyday Aspie blog.  

However we are where we are, and currently medical practitioners are the people authorised to diagnose autism, and however much self-diagnosis with peer confirmation might be accepted within the autistic community many people only feel they are “really” have a right to claim their autistic identity after the benedictionof an official diagnosis.
So while autistic women are getting some airing in the media the idea (I would say myth) that there are more autistic men than women does not seem to be challenged, the posited ratio just seems to move a little.  I believe that there are as many autistic women as men, I base this belief in observing the world around me and the people I come across both those identifying and/or diagnosed as autistic and others.  I realise that people can brandish statistics at me that demonstrate I am wrong, but this begs the question of the validity of these statistics (just like you can find a quote in the bible supporting most views, you can gather statistics to show most anything) as they won’t include undiagnosed women and therefore could just be showing up the bias of diagnosticians. Not to mention the fact that due to the low profile of autistic women until recently women were very unlikely to even present for diagnosis.

Interestingly if you are a woman wondering if you might be autistic I think there are better books available to support you in examining this than there are for men in this position.  I have always recommended Women from Another Planet, as it is written by autistic women and unlike individual autobiographies, offers many different perspectives on what autistic lives can look like. This was published in 2003 so these women featured in it are real ground breakers in terms of being aware of their autism and willing and able to share their stories.   It is idiosyncratically organised (as befits something the product of a group of early autistic adaptors working together) and densely packed with a rich variety of experiences and viewpoints.

A more recent book on the subject is Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx. This is organised in a more immediately accessible and convenient manner as well as giving diverse women the opportunity to speak to us. Sarah’s own voice comes through with engaging honesty and succeeds in addressing difficult topics with the consideration they deserve while maintaining her light humorous touch.  With the small caveat that Sarah uses the term “women with autism” where I would prefer “autistic women”  I would unreservedly recommend this book and hope that it will help increase the awareness that women are just as likely to be autistic as men. 

In fact it seems to me that there are many couples where both partners are autistic but only the man is diagnosed - because autism is so stigmatised it can be hard to address this but I think that decreasing stigma, and increasing awareness of autistic women will be helpful to these couples and society generally.

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.

There is an ongoing controversy about whether autism is a difference or disability, an ordinary condition or an extraordinary one.  This debate sometimes seems to cause downright hostility between different camps.  Why, you might wonder, does this question matter?  It matters because our assumptions and thoughts about autism affect how we treat autistic people and how we might respond to the suggestion that we, or a family member or friend, is autistic (and yes, this can happen to anyone!)

Unsurprisingly, this issue is especially hotly contested amongst autistic people, their families and autism professionals and researchers.  Assuming that difference and disability are irreconcilable ways of regarding autism strikes me as a false dichotomy, rather like the nature/nurture debate, in the last century.  That seems to have been resolved by the realisation that nature and nurture interact in complex ways to form an individual character.  I would contend that the same is true for difference and disability in relation to autism.

One reason why autism is so contested is that it is so difficult to define.  We know that most autistic adults are undiagnosed and diagnosis is made subjectively by behaviour rather than by indisputable biological features.  The invisibility and variability of autism allow extreme stereotypes and dubious statistics to flourish.  Indeed it can be difficult to be sure what we are talking about when we discuss autism. However the existence of autism as a unique condition, despite its varied expressions, has been recognised at an official level with the passing of the 2009 Autism Act which also recognises that appropriate support and accommodation can help autistic people succeed. 

To enable the accommodations to be made for it,  autism has to be recognised, and there’s the rub – autism is a highly stigmatised condition that presents challenges, so people would rather not have it.  Also many people working in health, social services or education have had minimal or no autism training and so are unable to identify autism. Even if they can, they are often reluctant to label their patients or students with a condition frequently seen as entirely negative.  Parents can resist the idea that their children are autistic and adults seeking help can be shocked to hear the suggestion that they have a lifelong neurological difference rather than a temporary difficulty.

It is frequently stated that only 15% of adult autistics are in full time employment; I think this figure is misleading  because many working autistics, often found in high-level and well paid jobs, are undiagnosed. Or they might have been refused a diagnosis by a professional who, like Baron Cohen, would “withhold the diagnosis” If someone with the traits of autism appeared to be managing their life.  An article in the Guardian last year began with a photo with the caption “In the UK, 77% of those with autism are still, as adults, relying on their parents for support.”  Clearly this sort of (mis) information would be frightening to any parent whose child just received an autism diagnosis.  

I believe this fear around identifying or diagnosing autism does real damage by preventing the personal growth and understanding that could be enabled by appropriate diagnosis.  As a parent says of her son’s diagnosis in Andrew Solomon’s book “Far from the Tree”  “We could make sense of things that had previously been inexplicable to us; we felt validated…..A Cray supercomputer is used for really complex intense computing…It runs so hot it has to be kept in a liquid cooling bath.  It requires a very specific kind of TLC.  And is the Cray defective because it requires this kind of nurturing environment for its functioning? No! It kicks ass! That’s what my kid is like.  He needs support, needs attention, and is amazing”

Some people seem to fear that if we accept that autism is a common condition and that most autistics are fairly ordinary, this would detract from acknowledging that autism is also a serious condition  – a  major neurological difference that can cause severe difficulties that are not always obvious to observers.  I think autism is best viewed as a difference that is also a potential disability.  I think we need to recognise and celebrate the diversity within the human race and within autism.

The existence of successful high profile people like Stephen Fry admitting they have bipolar disorder   has not subtracted from the recognition the bipolar disorder is a serious condition needing treatment, but it has offered hope and an alternative outlook to those affected by the condition. Importantly it also enables people to “come out” and find community with others in a similar situation. It would be great if more autistic people “came out” although Wikipedia already presents an interesting list of potential autistic roles models.

More awareness of positive role models would help normalise autism and make it easier for people to admit to having the condition. Accepting it as a difference that can be disabling would encourage people to be open to the understanding offered by the diagnosis and help them to get any support they might need to live fulfilling lives and be in a position to contribute fully to society. 

We need a culture change about autism similar to what has evolved in relation to homosexuality;  whereas before 1967 homosexuality was illegal, and even for decades after that there were no out gay MPs, now there are several and it is illegal to discriminate on the basis of sexuality.  This culture change is a virtuous circle we can all contribute to.

If you give someone glasses and they can see better, do you take away the glasses when the person can see better?*   Very few people would answer “Yes” to this, yet the equivalent to this happens to autistic children and adults.  Children given support at school whose behaviour and achievement starts to improve can find that the support is removed because now they are doing well and not deemed to need it.

I recently got an email from Ian, a great support worker who had persuaded his client, Gilbert, to come and see me for autism consultations after hearing me speak.  He wrote: “I have gone a couple of times with Gilbert to the weekly folk club in the town.  Gilbert sings and plays guitar and he has said he really enjoyed it and liked the atmosphere and was able to sing at the open mike.  He said she would go on his own but he hasn’t been since; something is holding him back - Gilbert says it himself.  Are you able to explore with him if there is anything that he could do to help him get out of his door and go. ”

I find this an interesting question because actually the answer is right there in the question; what helped Gilbert get out the door and go was having someone go with him.  
My take on this is that Gilbert avoids social situations because he has a disability (autism) that incapacitates him in such situations.  Given that Gilbert is autistic, and autism has at its core an information processing difference that results in social situations being particularly treacherous, it’s perfectly understandable that he would avoid them.  It seems to me encouraging that having Ian accompany him provides enough support to enable Gilbert to enjoy an event that was previously inaccessible.  This looks to me to be a good solution to the problem of Gilbert being prevented by his disability from engaging in community activities.

If there are not enough support hours for this to be viable, it might be worth seeing if there is a befriending service that could help.   While I think it might be possible given time for Gilbert to feel comfortable going alone to the folk club, expecting this to happen after just two accompanied visits is creating a situation that could well re-enforce rather than counteract feelings of failure.  In this case  there is a caring support worker who, despite having an understanding of autism, didn’t quite get the depth of the social difference and resulting difficulties.  

In Saturdays Guardian there was advice which I felt made a similar inappropriate “you can do it” assumption: http://www.theguardian.com/money/2014/may/17/dear-jeremy-work-advice .  There was an enquiry from someone who wanted help to decide what to do after a change in the nature of their job. They were doing fine providing customer support by email, phone and letter, but were struggling badly since the job morphed into a face-to-face situation “I felt I was forced into taking a role a long way outside my skill set.  I now wake up dreading the day ahead…….”.  The advice seemed to be essentially to get over yourself.  The ‘agony uncle’ responds “It’s only when you’re in the same room as a client that you throw a wobbly and I believe it’s within you to learn to screen this out…be grateful for being forced by this accidental restructuring into doing a job you’d never have applied for.”

To me this reply shows a lamentable ignorance about potential neurological and mental health issues  If someone said they had a job delivering papers on a flat round, but the route changed to a steep hilly one and now they were in constant pain, I doubt anyone would say “be glad you have this challenge”.  Mental distress is as real and disabling as physical distress and needs to be taken as seriously. It seems a shame that there could be such a lack of awareness amongst professional advisors of the possibility of disability that the advice they give could be toxic to an autistic individual.

*I love analogies, and irritate my children by constantly using them – however this one I have borrowed from a a speaker at a conference on autism diagnosis organised by Dr Laura Crane.