There was an item on Woman’s Hour last month (Tuesday 21st July), ostensibly about late diagnosis of autism.  It was about a woman whose mother experienced mental illness  and anxiety and finally came across a psychiatrist who, looking through the notes, realised she might be autistic.  Finally the interviewer said that of course she didn’t want to alarm people that anyone who might be anxious needs to get a diagnosis of autism. Unfortunately for many people the idea of autism in the family is alarming but stating this as an obvious truth doesn’t serve autistic people, or the understanding of autism, well.  If autism is alarming it is not because of its intrinsic qualities but  because as Shakespeare put it, “There is nothing either good or bad, but thinking makes it so.”

This put me in mind of an American client, Lydia, I saw recently. She’d initially written to me asking for a consultation about how autism affects family life.  I was in two minds about whether to offer a consultation as I’d recently decided not to consult with people asking for advice about how to understand their autistic partner (more about this later), but accepted this as it was a more general request.

At the start of the consultation Lydia told me she’d worked with autistic children and she loved them and had loved her husband who “has Asperger’s” to bits.  When she met him she was delighted by how well he got on with her (then 16 year old) son.  Her son was now in his twenties and had recently got an Asperger’s diagnosis.  As the details of her story accumulated it seemed increasingly likely to me that Lydia was also autistic.
In my experience a high percentage of autistic people have autistic partners even if only one partner identifies as autistic, autism runs in families so having an autistic son makes it likely that one or both of the parents are autistic, and people who are successful working with autistic people are often autistic themselves (and often initially unaware of it – I’ve had several such clients and we’ve had  such people join AutAngel).

I was wondering whether to mention my impression. Suggesting someone might be autistic isn’t something I do casually as it is such a stigmatised condition that this can be experienced as a negative conclusion. On the other hand it has the potential to be immensely helpful. I made the judgement call to put this forward as a possibility.  Lydia accepted this readily saying it was something she’d wondered about over the years.  She told me about her school years where she was a grade A student, until she noticed how difficult it was to fit in, and then she switched all her attention to watching how other people behaved and learning to imitate them. She was reasonably successful at this but her school grades fell down radically.

She told me she was always outgoing and cheerful, but she had no idea who she really was.  Her responses to other were performances rather than expressions of personality and she found human interaction tiring..  When I explained that autistic people had atypical developmental trajectories, and that we usually lack a sense officially called “theory of mind” but I call a “intuition of mind”. this all made sense to her and she expressed joy and gratitude at being presented with a reason for something she had never understood.  There was still the issue of her husband’s increasingly inconsiderate and frankly unacceptable to behaviour to her. She told me when she tried to discuss things he would insist there was nothing to discuss as he felt OK, seemingly unaware that it was relevant whether she also felt OK.  

Lydia had mentioned to her husband and some family members that she thought she might be autistic, but everyone denied this was possible, her mathematician husband saying this was inconceivable as she was diametrically opposite to him, and got on so well with people. (A feature of autistic people is that we inhabit the outer edges of the human constellation in all directions, so we are not alike, it is not unusual for people to be told they can’t be autistic because they are so different to a specific autistic person) At the end of a first session I always say to people that they can take some time to think if they would like to book further sessions and can let me know by email if they would, but Lydia wanted to book another session there and then (which isn’t that unusual), and paid that evening (which is unusual).
However when the time came for the next session I got a note thanking me for my support and saying she would not be attending as it was apparent that she wasn’t autistic and her feelings of being ‘sandwiched’ in between her ‘Aspie’ family members were correct. She needed to find someone who understood this.

I experienced this note as a shock that knocked the air out of me. Lydia had seemed so pleased to be given information that enabled her to contextualise her life experience and enabled her to feel less alone.  I can only assume that this feeling dissipated when immersed in the larger societal understanding of autism as being other, such that it was only acceptable when seen as a problem in her family members that she needed to deal with rather than a part of herself.
My experience is that when women (and in my case it has been women) come to me saying they want consultations to help them understand their autistic (male) partners is that what seems to be wanted, albeit indirectly, is a  way to blame problems in their relationship onto “autism” rather than to engage with the necessary compromise required by any ongoing relationship.  

I no longer accept clients who request consultation for the purposes of understanding autistic partners, I instead refer them to training which they can attend with their partner (this is the most useful as they can discuss the contents together) or by themselves with the opportunity to interact with the mixture of autistic and non-autistic participants that my trainings attract

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 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)

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.

I was at a conference recently when one of the other speakers ( psychologist )  referred to autism as a “Gucci diagnosis” he said that he had become quite protective of the diagnosis as he found inappropriate people wanting it. He felt it needed to be guarded so it kept its meaning for those who really warranted it.

I guess this idea fits with another current orthodoxy which is that to qualify for an autism diagnosis you have to be significantly disabled by the condition.  In other words if you have worked hard and overcome the barriers that autism, or attitudes to autism, place in your path, you are not autistic – however if you experience the same barriers but don’t overcome them you are autistic.  Seems to me that is tantamount to making a diagnosis a prognosis.  Autism is a lifelong condition, so if you have it, it is not going to go away, although if you are lucky you may find ways of mitigating the negative effects on your life – but if you do that it seems some people will dispute the validity of your diagnosis.  As Landon Bryce says in his cartoon “one way to make sure autistic people never succeed is to make failure part of your definition of autism” (https://www.facebook.com/thautcast/posts/118261778354172 )

My own take is that there is significant stigma attached to Autism. I experience this on a daily level when people saying to me  “you don’t look Autistic”  think they are  complimenting me.  However the stigma and misinformation  that suggests anyone can “look autistic” and autistic is a dreadful way to be is being slowly dissolved at the edges.  There is more appearing in the media about the entire autistic spectrum and some celebrities are coming out as autistic and talking about their experiences of the condition Darryl Hannah http://www.huffingtonpost.com/2013/09/27/daryl-hannah-autism-terrified-fame_n_4002697.html and Paddy Consendine  http://www.telegraph.co.uk/culture/8440399/Paddy-Considine-Knowing-I-have-Aspergers-is-a-relief.html  spring to mind in this respect.  So yes things are improving vis-à-vis the cultural baggage associated with an autism diagnosis, but I’m not sure we’ve reached Primark, let alone Gucci.