Diagnosis matters

[image shows a background of multiple layers of brightly coloured interconnecting cogs, with a large central bright pink circle displaying ‘diagnosis matters’ in white text]
Every now and then, in ‘real life’ and in the ‘virtual world’, I encounter people asking, ‘Why did you need a diagnosis?’ or ‘You’ve managed to get this far without a diagnosis, what’s the point now?’, and others confidently stating, ‘I know I’m autistic but there’s no point getting a diagnosis at my age’ or ‘I don’t need a doctor to tell me I’m autistic’. More and more adults are identifying as autistic without pursuing clinical diagnosis, often explaining that autism is not a medical/psychiatric condition, and that clinical diagnosis can be impossible to access and even detrimental for some people. I don’t dispute these claims at all, but I do not, on the whole, think that self-identification is the way forward. Autism does need to be de-pathologised, by not only focusing on deficits and difficulties, but skills and strengths too, and I am in agreement with those who argue for it to be removed from the psychiatric manuals, but we still need a means to identify autism and evidence our support needs.

My experience of diagnosis, both for myself (here and here for example) and my son, has been overwhelmingly positive, and I accept my subjective bias. However, the challenge to the existing clinical diagnostic model does raise important questions and quandaries, and this post is my attempt to explore some of these issues and tensions.

“I sometimes try to imagine an ideal world where all our diverse needs would be met and catered for, and we would not need our differences categorised and labelled. I hear autistic people’s requests for an ‘autism-friendly’ world and think how lovely that would be. Then I remind myself that our needs and supports are infinitely diverse, very often contradictory, and that even if we remove all the ‘labels’, those of us with minority neurotypes would still feel different. How would we understand ourselves and find each other without some concept of our shared neurotype? Without a ‘label’ for ‘my type of brain’ how would I find people like me? How would I understand why I feel the way I do? Would I still feel broken and wrong and alone?” (PS)

Thus, I start from a position of supporting the need for a shared concept of our minority neurotype. In the world that we inhabit today, the clinical label of autism both has meaning and is significantly better than the labels of weird, rude, unfriendly, aloof, inept and freak (and worse) that get applied to many autistic children and adults. Before my son’s diagnosis he was labelled ‘naughty’, ‘thuggish’ and ‘spoilt’, but diagnosis brought new understanding and a different way to interpret his behaviours. If, like me, you have a struggling child, who is academically able and verbally articulate, whilst presenting with what are described as very troublesome behaviours and a number of developmental delays, or, like me, you are seen as strange and awkward and fussy, you are faced with a barrage of judgement and assumptions. An autism diagnosis can liberate us from our own internalising of these judgements and, if we are lucky (and it really should not depend on luck), provide others with a greater understanding of our strengths, differences and support needs.

As part of preparing this blog post, I asked a group of online friends, including women with NHS and private diagnoses, women who have been referred for diagnosis and women not yet sure how to proceed, about their own experiences and thoughts about diagnosis. They will be referred to by initials, either their own or ones they have chosen for this piece, and have been offered full control over the inclusion of their contributions. This is not an academic piece, more a personal commentary enriched by the contributions provided by this wonderful group of friends. None of us can speak for all autistic people, but hopefully what follows will provide some insight and help answer some of the questions sometimes asked.

Why is diagnosis important?

Autism is more than a feeling.

I’m not sure it’s possible to ‘feel autistic’ without having some shared sense of what being autistic feels like, I’m not even sure I do ‘feel autistic’ at all, I just feel like me. It was only by reading other autistic people’s accounts of their own feelings, behaviours and interpretations that I started to realise that how I think, feel and engage with the world is more like other autistic people’s experiences than the non-autistic majority. Without a shared understanding (both as a diagnostic construct and as a social construct) of what autism and being autistic means I would have remained clueless.

“I’ve described my experience of undergoing the ADOS autism diagnostic assessment as the time when I ‘felt’ most autistic, as if it drew out all my inner autism, the ultimate ‘show and tell’. Looking back, I don’t think I was ‘feeling’ autistic, I was just an autistic under pressure, interpreting my own behaviours through my knowledge of how others have described autism.” (PS)

Diagnosis is more than a ‘label’.

The process of diagnosis, the lead up to the final ‘ta-dah you meet the diagnostic criteria’ moment can be as important as the ‘label’ itself. A good diagnostic process will explore strengths as well as weaknesses, will be broad-based to ensure any co-occurring conditions are identified, and will be an empowering experience. Sadly, most diagnostic processes seem to be heavily deficit-focused, narrow in scope, and can reinforce feelings of inadequacy and deficiency. A good diagnosis will go beyond merely naming the autism and will provide evidence of those strengths, needs and possible adjustments. Sometimes we don’t know our own strengths until someone else tells us, we don’t just want confirmation of all the things we ‘fail’ at, we need affirmation and hope too.

It might not be autism.

My experience suggests that most people who think they’re autistic, who have done some research, in particular those parenting autistic children or with other familial links, and who pursue diagnosis, almost always get diagnosed as autistic. But it might not be autism, or it might not be ‘just’ autism, there may be other or co-occurring conditions which might benefit from treatments.

It may help with identifying co-occurring conditions.

Autism does not exist in a vacuum, and it is extremely rare for anyone to ‘just’ be autistic. People are complex beings, but sometimes unpicking and identifying one thing makes it easier to see other things, resulting in improved understanding and enabling more appropriate supports and care/self-care.

To ensure any treatments given are suitable.

Many autistic people describe unusual reactions to medications, and there are therapeutic approaches which may not be suitable. We do not yet know enough about differences in autistic neurology and physiology, but the prevalence of epilepsy, autoimmune and connective-tissue disorders (eg Ehlers Danlos Syndrome) among the autistic population suggests that, if there are autistic tendencies towards unusual drug reactions, we need to know who might be at risk from complications.

Diagnosis may protect us as we age.

We still do not know enough about autism and ageing, but I want it recorded that I am autistic so that if I am subject to neurological tests or placed in residential care, my autistic neurology is taken into account.

Diagnosis can remove doubt and provide clarity.

Like many late-diagnosed autistic people, I found the period of wondering whether I might be autistic incredibly difficult, unsettling and anxiety-provoking. Often our need for ‘proof’, to satisfy ourselves that we are right and that we are indeed autistic, becomes overwhelming and all-encompassing. As parents, the need for a diagnosis for our children can engender the same thoughts and feelings.

“Suspected-but-not-sure was the most stressful time for me … I was suffering with almost daily meltdowns, anxiety etc but felt I couldn’t ask for accommodations or call myself autistic or anything until it was official. Because if I was wrong then I would have lied. And I might not have needed accommodations as much as a boot up the arse.” (RS)

Many of us feel we cannot ask for the help we need without evidence of our autism, the worry that we might be wrong being ever-present.

“I don’t have a diagnosis, but I am on a waiting list. Have been for almost 18 months. I would never say to anyone that I’m autistic. I’ve said to a few … that I might be/it’s been suggested that/I’m waiting for a diagnosis etc. It would feel like lying because I don’t have a diagnosis.” (GP)

Not all autistic people have the self-awareness or cognitive abilities to recognise their own autism. And what about the children?

Seriously, anyone who suggests that we should abandon clinical, medical and psychiatric processes to diagnose autism needs to think about what we replace it with, because we have to have something. It is beyond arrogant to claim that because some autistic people can identify their own autism that this should be considered as an alternative to clinical diagnosis (yes, I have seen it suggested that self-diagnosis is superior to clinical diagnosis). We, as in those of us autistics who can articulate this stuff, need to tread carefully and not throw less able autistics under the bus in our pursuit for de-pathologisation. We need to ensure that we don’t give clinical commissioners a ‘politically correct’, autistic-sanctioned justification for cutting back diagnostic services for children.

Clinical diagnosis can prevent misinterpretation of observed behaviours.

It’s never advisable to make assumptions based just on what we observe. We all have a different set of filters through which we interpret and make sense of the world around us, and this affects how we view what people do, and how other people interpret our observable behaviours. For some of us, the certainty of diagnosis equips us with a set of filters we can hand out to people we know and meet so they can see us through an autistic lens. This not only helps them understand what we do and why we do it, it can also help us feel less awkward and embarrassed when we behave in unexpected or unusual ways.

“I particularly hate shutting down. I’m a calm, compliant, easygoing person and when I shut down I’m an arse and then I’m being an arse who can’t talk. It looks like bad behaviour – it is bad behaviour – and I hate being unable to stop it.” (HA)

Self-diagnosis is not enough when you need help, support and access to services.

Like many, I would not have got adjustments at work or support as a disabled student without a clinical diagnosis. This is often a driving force for adults seeking diagnosis.

(n.b. this can also work the other way, for example, speech and language therapies are often inaccessible once a child is diagnosed autistic…)

“In an ideal world we would adjust things individually for every child at school/person at work etc and then we wouldn’t need diagnoses. We could just do whatever works for the person. But those kind of adjustments/that kind of individualisation costs money, so right now we have the diagnosis barrier. So absolutely essential to have a diagnosis to get any kind of help at all.” (GP)

“I would never question someone who has self-diagnosed but I do desperately want an assessment (and hopefully diagnosis) for myself. I do think it can make a difference psychologically and practically (it’s really hard to get support for autism but even harder without a diagnosis).” (FG)

Support needs aren’t always obvious.

Many, many autistic children and adults hide their difficulties, not always consciously, which means support can be hard to access without clinical evidence that the difficulties exist.

“I fought to get both my boys diagnosed as early as I possibly could despite neither really ‘needing’ any outside support right now because I know how long the process can take and I wanted both to have the diagnosis in place before I needed any official support for them. Because both boys … are very good at masking I feel I need the back-up of the professionals for anyone to take me seriously.” (FG)

Clinical diagnosis provides legitimacy and can be empowering.

Diagnosis has been positive, affirming and freeing for me and many others.

“For me, my diagnosis was a massive relief because it means I can understand who I am…” (HT)

“… I was only diagnosed in … and I am still processing it but actually having a diagnosis has allowed me to give myself permission to fail at things or not cope with them. All my life I have hated not being able to do stuff or cope with day to day life without becoming exhausted and stressed. Now I can say fuck it, there is a reason and that it’s ok. I can give myself space and I can tell others that I need space too, even people who don’t know I have a diagnosis, because I know. I only went for the referral for me!” (RT)

“Knowing it’s likely has in itself made a huge difference … it’s enabled me to realise that some things are just genuinely more difficult. It’s not that I’m lazy or stupid … I’m just different … I still feel fraudulent though. I feel like I really need that medical ‘yes’. A big part of my brain still says ‘what if you are using this as a convenient excuse, what if you are lazy, badly disorganised and a general disaster zone in public?” (WS)

“I needed the confirmation from an expert. Years of doubting myself and believing I was rubbish meant I couldn’t accept for myself that there was a reason for it. Even now I’m struggling to shake off the deep-seated belief that I’m crap, but I have the chance to work it out, which I never could have without a diagnosis.” (HT)

“I wasn’t comfortable with self-diagnosis. I needed it to be definite, clear cut. I also needed a diagnosis for work where I was struggling. It took 18 months from being referred to getting assessed which was a very stressful time … I cried with relief when I was finally diagnosed, I finally had an answer for why I am as I am! Now I’m much kinder to myself, I don’t beat myself up as much, I don’t have meltdowns as often. I managed to move jobs to something less stressful too.” (FA)

“I was self-diagnosed for a while but I felt like a fraud. However sure I was, there was always the worry that actually I was just a twat who couldn’t cope with the demands of daily life. The diagnosis was an enormous relief. So I’ve gone from someone who felt there was definitely no need to look into formal diagnosis to someone who desperately needed to know.” (HA)

Being autistic is more than an identity.

Without a doubt, autism has given me an identity and a sense of belonging I never actually knew I was lacking, but it is more than that, and it isn’t all positive. It has impacted on my life in so many ways, limited me and continues to limit me, and I need to be able to say that. We need to be able to talk about the hard bits of being autistic, to learn from each other and to ensure that we can get support. We need to acknowledge how hard it can be so that people don’t feel like failures when they’re having a tough time, and so that it is absolutely clear that we need supports and adjustments and accommodations.

“I wonder if anyone seeing ASD as an identity is missing the point somehow, because it’s not something you choose, it can be bloody difficult, and I’m not sure it’s something I would knowingly choose for myself or [my children]. As a family we can talk positively about ASD, but it’s alongside acknowledging that it can be very distressing and difficult.” (HT)

“I loathe the phrase ‘identify as’. It offends my love of clear language and efficiency because it doesn’t mean anything. The whole point of diagnosis is that the thing you’re being diagnosed with affects your life in some way negatively and that you get help for it. Taking on an identity is a way of joining a group. They are completely separate things.” (GP)

“… it’s not all positive and happy outcomes, I am really shit at this parenting malarkey, because three (possibly more) autistic people in one house is a fucking nightmare most of the time, with clashing needs left, right, and centre. My only hope to keep things ticking over … is by being permanently chirpy, active and flexible, which I can do for a day or so, then my mental health suffers…” (HT)

I am not saying that self-diagnosed people aren’t autistic…

The chances are that most ‘self-diagnosed’ autistics are indeed autistic.

“I have nothing against self-diagnosis as such, I think if someone has thought about it and researched it as much as I did during that time, the chances are they’re right. But it wasn’t for me, even now I can’t say ‘I’m autistic’ to a professional without clarifying that my diagnosis says Asperger’s.” (RS)

“I don’t have a problem with someone self identifying, and most autistic people I’ve personally met have to go through that stage before they can go on to seek diagnosis – let’s face it, there isn’t the understanding of ASD for anyone to be referred without a battle, unless they are obviously autistic.” (HT)

… but, diagnosis matters.

Hopefully this piece has given some food for thought, feel free to comment and share. Thank you for reading.

Massive thanks to the band of rebels who helped me write this piece.

NFO 😉

3 thoughts on “Diagnosis matters

  1. This is a really great post, and as someone who is on a massive waiting list to be assessed I can relate to so much of it. Even though I’ve researched this often late into the night and for the last few years and some days it seems really obvious to me that I am autistic, I still need that official diagnosis and feel I can’t call myself autistic or ask for help without it. Oddly I can perfectly accept self-diagnosis in others, but not for myself.

    Liked by 2 people

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