I don’t find “Why did you get a diagnosis?” a simple question to answer. In a way perhaps “The cost-benefit analysis finally worked out in favour of trying to get one at the same time as I thought I actually would get diagnosed” is the truest. Just as I had conversations about whether I should get one with diagnosed autistic people before I did, now I have conversations with undiagnosed people trying to work out if they could, should, would. It is part of the reason I am “out” about being autistic- so those people can find me*
I might have to add another part to this blog because it’s turned out long again. Just going to put my “Pros and Cons” list first:
Pros and Cons of an Adult Autism Diagnosis
A List (partly personal, partly trying to apply it generally)
- Pros of Diagnosis
I’ve been so much nicer to myself since. These sensory differences? Real, not imagined. I have permission to avoid loud, busy places, take care of myself when I’m “peopled out”, recognise that no, not everyone finds having their nails filed excruciating. I’d already stopped trying to fit in with people as much because I recognised we’re surrounded by arbitrary “shoulds” but I take on board even fewer of them now. I probably have a lower threshold for socialising than most people and that’s okay- even though I enjoy it when I do it.
- I’d already read quite a bit about autism, but have now read more and this has led to more self-understanding in other ways. Those odd three months where my brain was foggy after I was Glastonbury Poet in Residence and did an Edinburgh run? Probably a “burn out”; almost no doctor will tell you about them. I’m more likely to avoid them in future by doing the (still hard) thing of saying no to things that will be overloading, particularly hard for freelancers.
- On the other hand, as a freelancer I applied for and got “Access to Work”; if you’re self-employed and fit the criteria (earning above £12k a year I think and able to prove it which I did with tax records) you can get DWP money to help with access needs. I was awarded 8 hours a week of support with admin, which has made a huge difference to my working life. Companies who employ autistic people can also apply for helpful things. The process was about a thousand times simpler than a PIP process would be.
- I’ve also been awarded £10 thousand Arts Council money for a project called “Writing Autism” in which I start incorporating it into my practice as a poet and performer and have developmental conversations with other neurodiverse writers and artists. I have previously had Arts Council grants for other projects, but it may well be that the element of “diversity” was recognised in this one. Connected to this is the fact that, as a writer who often writes about self and identity, I now have a whole other layer of knowledge to add. I’m starting to write work from an autistic point of view- and (some) of the world is beginning to recognise it needs this.
- Connections with other autistic people. I’ve mentioned this before- but it is so heartening and affirming to connect online or in person with other autistic people and find that things I previously thought were “just me” are in common.
- Benefits to my relationship: my husband says he now doesn’t blame himself as much for things I find hard. He thought they were to do with him, but now realises they’re just me so takes them less personally. He thinks “What’s it like to have an autistic wife?” is an odd question though, because he sees me as just me and hasn’t read up massively on autism.
- I can speak out on an issue I feel passionately and whose stereotypes I want to challenge, with the authority of experiencing it. These blogs, and my opinions on matters to do with (adult female autism at least) probably carry more weight, coming from an “officially diagnosed” autistic person. This has an exact counter-balancing downside though, which I’ll mention in the cons list.
Cons of diagnosis
- People don’t know that much about autism. If I was a more archetypal autistic person maybe people would say “Of course” but they mostly just go “What! But you can do eye contact, are warm and chatty and funny”. As people are not always great at questioning their own assumptions, I presume that they often think I’m wrong about myself rather than that they’re wrong about autism. So, it could be that they now think I lack empathy, a sense of humour and the ability to socialise. Or it could be that they see I have these things and so am lying about my diagnosis. Or that I express these things differently but they don’t recognise a different communication/expressive style. Or it could be that if I did struggle with any of these things, they would assume it was an absolute and forever difficulty, rather than a consequence of a particular situation, sensory overload or because I was still (as everyone does) developing.
- Actually- a simpler way to put this; the inaccurate things that people say about autism are now assumed to apply to ME. I feel a bit spoiled for admitting this.
- Because of the stereotypes, and because society is geared towards the “normal”, then there is a lot of stigma. I’ve mentioned elsewhere how I’m still reeling because the head of a school with many autistic pupils told me autistic teachers and governors wouldn’t be able to hack it. She was generalising from her young teen pupils and hadn’t met enough autistic adults to recognise that many of us are imminently employable (Of course the figures about the low percentage of autistic people in employment don’t help. In some ways I don’t want these figures to change because they mean that help is funnelled towards autistic kids gaining valuable skills and opportunities. On the other hand the figures are bollocks, sorry, as they don’t take account of all the late-diagnosed adults and undiagnosed ones in work).
- People take less notice of what I have to say. For someone who has spent their whole life trying to overcome a family that tried to squash my voice by learning to speak out and be heard, this is particularly devastating. Usually for example, academics answer my emails (as I’m a post grad, and even before my PhD). Now if I mention my autism, as when I was offering my services as an ethnographic researcher on autism projects they just don’t. Journalists don’t get back to me about autism stories- they do about other things (In general my autism narrative is neither enough about suffering or transcendence over remarkable odds to interest anyone). As autistic academic Melanie Yergeau points out, autists are seen as “Non-rhetors”. We are not reliable witnesses, we cannot be believed, we cannot speak properly. Can I mention again how devastating this is? I took the stage after a psychiatrist once who said autistic people are a “genetic mess” and was expected to command the audience (I did obv). My sudden flood of autism blogs has been in reaction to this silencing and othering. I’m going to have to write myself into being. Again.
- We are vulnerable in a society which is increasingly hostile to people who are, or are perceived as disabled. For example, the DVLA has suddenly changed its rules to say that all autistic people now have to declare their condition and our GP has to let them know whether we’re fit to drive This decision, made on literally no evidence, is the thin end of a wedge. As a two year old twin to a single mum, the fact my mother had support from her own mother, then married her boss enabled me to evade too much scrutiny from the authorities, despite our poverty. As a 16 year old who lived in a bedsit, the fact that I was doing A-levels and “good at school” enabled me to evade too much scrutiny from social services who didn’t help, but didn’t hinder. I’ve always been just privileged enough- being white helping too- to avoid being funnelled into potentially damaging services. Now, I may have to fight for the driving licence I got via test, just because a government committee who have wrongly classed autism as a mental health/medical condition (Which can occur suddenly, or change) may have to ask my (literally clueless about autism GP) to put me on a list. It gives a whole new complexion to my decision to be “out” about autism in these blogs (though of course getting a diagnosis and being out are usually two different things- the driving issue is the only thing I know of where declaration is compulsory). ( UPDATE: Thank goodness- after a weekend of activism, mainly via Twitter and intensively contacting the press and organisations from autistic people such as Ann Memmott and Laura James, with the support of the National Autistic Society and Police Autism Federation as well as MPs Jess Phillips and Jo Platt, the DVLA has reverted to saying that we only have to notify if it affects our driving and apologised for the chaos).
It is important to know that in my list, the cons are mostly external factors about how autistic people are perceived or treated, and are very much dependent on where and when you are.
The pros are more internal factors, about how you perceive yourself and the relationship you have with others around expressing your identity.
The context for my diagnosis is that it took place in a country, the U.K, which has had several years of austerity under a Conservative government. Mental health services, social services and education are under great strain and threat of privatisation. The market rules. Neither schools, nor doctors surgeries, nor social services are rushing to have people who are difficult to categorise (autism is not in itself a learning disability, not a mental health issue, nor even a medical condition but sometimes autistic people have multiple complex support needs) on their books. When conditions are treated by the application of simply signposted “pathways” and Cognitive Behavioural Therapy which relies on people responding in a “normal” way to psychological stimuli designed to make them more productive citizens, then autism requires time, knowledge and skill beyond the cursory (if any) training offered to most medical/social services/education professionals.
At the same time, as there is increasing awareness nationally and internationally that autism is not just a thing affecting non-verbal boys, there is more recognition of “atypical” (but not really atypical) presentations of autism. In other words, more people are now able to be diagnosed via tools like the splendidly named “DISCO” which was developed at the Lorna Wing centre in order to pick up autism in women. The neurodiversity movement celebrates brain-differences and encourages people to embrace neurodevelopment conditions as diversities rather than disabilities. In mainstream culture, including corporate culture there is increasing recognition of the value of diversity. In my own field, the arts, the Arts Council actually factors in how far organisations embrace difference and otherness into the funding they give with the “Creative Case” for diversity. It can certainly be argued, however, that much of this embrace of diversity is performative, surface-level, going too slowly and still geared to producing “productive citizens” in a capitalist system.
I do wonder if I was perhaps a bit swept away by the general “Difference is now good!” narrative, and failed to recognise how very stigmatised and misunderstood autism still actually is – not least because of the complex (and artificial) divide between autistic people with very high support needs and those with (generally but not always) lower support needs. This unhelpfully sees parents of high support-need autistic children who still feel unheard because of all the issues around health and social services, pitted against autistic people who would once have got a diagnosis of “Aspergers” and who have generally battled and muddled through life without needing support enough to seem as if they’re not at any disadvantage in a society mostly not designed for them.
Perhaps the key question around diagnosis then is- how much leeway do you have (in your current personal and working life and your social position) to deploy your knowledge about yourself? How much do you want, how much do you need? A society focused on the individual as ours is, is in favour of facilitating this, but conversely, it also deplores the idea that there are people who may need support or who may not contribute in the approved ways. Also, what is true in your situation now may not be true in future. These are the paradoxes we must negotiate when taking on something as complex, as potentially liberating, as potentially oppressive as an official autism diagnosis…
*A brief description of my actual path to diagnosis; I went to my GP with a list of reasons why I thought I was. He sent me home with the AQ-10 screening questionnaire of ten questions. I pointed out this questionnaire was designed for boys originally and certainly not for adult women. It asks questions like “Do you have trouble telling stories” to someone who makes a living as a professional writer and performer. I wrote a lot of things on the form about how inaccurate it was. Funnily enough this didn’t cause me to get a diagnosis then and there. He asked me to fill in another. I was aware I needed to get 6 out of 10 to get a referral and wasn’t sure I could lie to get it (yep- again, probably should have been given a diagnosis then and there…). He then found that the Tuke Centre in York, the nearest NHS diagnostic hub had a ten month waiting list. Even he was astonished at this.
Meantime I’d rung them up and found no reason to think they had any particular clue about adult women and diagnosis. Most of my life I would not have a spare £1000 but at this point, doing a funded PhD and some other work, I did. I spoke to a psychologist at the Tizard Centre at the University of Kent as I knew from someone else that they were good and used the tools developed at the Lorna Wing Centre (I knew about these because I visited them in 2011 when I was originally thinking of doing a comedy show about me seeking a diagnosis). They needed an “informant”, and lacking accessible family, the psychologist spoke to my husband for a couple of hours on the phone the week before. Then I went down to Kent and had an interview about my childhood and life now of about four hours, including a couple of (odd) tasks like narrating a story to accompany a children’s picture book. I also took some school reports and a couple of exercise books. At the end of it, the psychologist told me I met the criteria for an Autism Spectrum Condition.
I was relieved really to not be deluded and it suddenly made this thing that had not been quite real, real. I’m aware that this is a complicated privilege. I was able to afford this. Many people are not, or end up going to professionals less trained in the ways adults/women present. Self-diagnosis is valid. There’s a very strong argument that we shouldn’t need medical diagnosis for something that isn’t a medical condition. Possibly there needs to be an alternative identification process though, as often people feel the need for confirmation from someone else (More rigorous than me chatting to them for five minutes and going “Yep, you are”- though I bet you a million pounds that would hold up against any clinical methods available).