In defence of diagnosis

Note: there is a brief discussion of suicide and suicidal thoughts in this post. 

It was recently reported that NHS commissioners in south-west London are considering cutting back on the number of children being diagnosed with autism.

An article on the BBC website stated that ‘the idea of restricting an autism diagnosis to only the most severe cases was discussed earlier this month.’ And although it reiterates that ‘the local alliance of five clinical commissioning groups (CCGs) says nothing has been decided yet’, that such a discussion is even in motion suggests that we are teetering on the edge of terrifying and dangerous cliff.

If autism diagnoses are denied on the basis of ‘functionality’ (a concept of labeling autistic people that I and many other autistic activists despise), then people will die. And I say this without a hint of drama or overreaction; with absolute sincerity, and in absolute fear for the autistic individuals who will follow us.

Because my autism diagnosis saved my life.

I was around about twenty-one years old when I first began to chase a diagnosis – an incredibly close friend of mine had disclosed to me that they were autistic, and from that came the internet searches, the stalking of autism blogs, and finally the conversation with my mum.

I was in an awful place at this time. Having struggled through university, I was now an unemployed graduate with no understanding of myself and no direction in my life. Even when I eventually found a zero-hour minimum wage retail job, I was reliant on antidepressants and, on many days, struggled to find a reason to un-burrito myself from the duvet, get dressed, wash or eat. At one point, during a talk with the doctor, I came to the realisation that I was willing myself not to wake up of a morning – because not waking up seemed a lot more preferable to waking up in a world I desperately didn’t understand.

After numerous counsellors, different medications on different doses, and several sessions of cognitive behavioral therapy, I was referred to a psychiatrist. When I finally reached the top of the waiting list, and found myself sitting in the psychiatrist’s office with my mum by my side, I gathered the courage to drop the word ‘autism’ into the conversation.

He didn’t quite laugh at the suggestion, but he didn’t have to.

Oh, I don’t think so. 

Look how well you’re speaking to me. 

And your eye contact is far too good. 

No, I really don’t think so. 

I was utterly deflated. The thing I had been grasping hold of, the thing that had been clutching close to my chest as a way of finally understanding why I was the way I was, had been ripped from me with a wave of the hand and a few brusque sentences. This felt like it. It felt like the end. I had nothing left.

Luckily, I did have something left.

I had my mum. And my mum is a warrior.

Eventually, probably as the only way to get us out of his office, he begrudgingly agreed to refer me to the autism team at the local hospital. And they were lovely. I know how lucky I was in that respect. The wait was long and tedious, but worth it. Once we had the initial appointment, all it took was one more session and we had the diagnosis.

When they told me, I cried.

I cried because I was elated.

In that moment, at the age of twenty-three, it was like someone had turned on the demisters and cleared the fog away from my life. I could see myself, my actions, my emotions, with a clarity I had never had before. It was a long road, but now that I was armed with those words – you are autistic – I felt ready to find my path and smite anyone who got in my way. I was ready.

From this point, the way I approached the world changed. The way my parents approached looking after me and dealing with my eccentricities and meltdowns changed. I was able to ask for help. I got a job at an autism charity, had a work coach put in place, was supported and encouraged, and was able to find ways to control my own anxieties. Slowly, but surely, I began to find both my place in the world and an unflappable sense of pride in my difference.

If my life had continued along the trajectory it was on before my diagnosis, I can’t even imagine where I  would be. I don’t even know if I would have been able to stand it for much longer. Although I had not yet reached the point of being suicidal, I was beginning to feel the creeping tendrils of suicidal ideations brushing against the back of my neck. And even if these drastic compulsions had never materialised in reality, all I was doing was surviving. I was not living.

Make no bones about it. My autism diagnosis saved my life.

But, if we were to judge on the ‘severity’ of my autism under these new suggestions, I would have been turned away at the door.

I am stamped with that most evil of all labels: a high-functioning autistic.

I am verbal. I can maintain eye contact. I have a good degree. I can hold a job. I can – and please do not gasp – hold a job in front facing customer service. For relatively long periods of time, I can pull off a reasonable impression of a semi-neurotypical person. Yes, it drains me of all energy and makes me an uncommunicative angry overloaded monster towards my loved ones, but, in public, I can do it!

I have exactly zero doubt that, had I been pursuing a diagnosis in an alternative reality where the changes being discussed had been implemented, I wouldn’t have been referred for diagnosis. And just imagining that there may be a parallel world version of me out there, somewhere, living that hell, makes me want to curl in a corner and howl with grief. The thought of future autistic generations going through that makes me want to dig a bunker and gather them to me, hissing at anyone who approaches in an effort to protect them from the world.

I was able to access a diagnosis – no matter how late that diagnosis was. My diagnosis changed my life. And I am determined that the kids who come after me will not be denied that opportunity.

It’s important to recognise that even for people whose autism presents as ‘high functioning’, ‘not as severe’, or without any comorbidity, diagnosis can be life-changing and life-bettering; they deserve to be able to access the support and the help that is available for them, even if those support needs are not as high as others’ on the spectrum.  The idea of basing referral for diagnosis on the severity of ‘symptoms’ (how I dislike this word when talking about autism) is ludicrous and dangerous.

I am loathe to bring in the age-old comparisons between physical conditions and neurological conditions; these comparisons often rely on the idea that people with physical conditions are treated with more respect or care because their conditions are more visible, and I know from experience that this is as far from the truth as you can get. However, in this case, I feel like I must in order to highlight the absurdity of such the idea that is being floated:

If it were decided that there was an abundance of cancer diagnoses – a higher rate of diagnosis and referral than a service can deal with – would this be solved by declaring that only those with the severest symptoms would be sent for diagnosis?

Even those with ‘less severe’ symptoms will still have cancer. Not referring them for diagnosis will not make the cancer go away. It is just likely to exacerbate the problem in the future.

Autism is not cancer. Cancer is a disease. Autism is not a disease. But the metaphor stands firm. Even if they are not referred for diagnosis, they will still be autistic and will still be in need of the available support. What is instead being created is a time bomb, whereby a generation of young autistic people are denied support, denied self-understanding and denied the chance to live their very best life. That is unacceptable to me. It should be unacceptable to everyone.

Thankfully, these proposals are in discussion rather than set in stone, and they have come in for strong criticism. The National Autistic Society, in particular, has stated that they are ‘deeply concerned’ and will be ‘writing to the commissioners to relay [their] concerns directly and to offer to help them make sure that this vital service is available’. The following quote from their statement effectively sums up many of my feelings, experiences and fears on the issue:

“An autism diagnosis can be life changing. It can explain years of feeling different and help unlock crucial advice and support. A failure to get that support at the right time can have significant consequences – to school, home life and later on in employment. And the longer someone lives without the right support, the higher – and more expensive – their needs can become.”

(for full statement, click here)

They also have touched upon the economic side of things, which had not crossed my mind (my connection to this being rooted in my own emotional experiences) – it may save money and resources in the short term to limit the number of autism diagnoses, but, in the long term, autistic children will continue to be autistic children, who will then grow into autistic adults, and, if they cannot access timely support and advice their needs will only become greater. This is not only unacceptable on a moral level, but negates the ‘savings’ that would be made by denying them diagnosis as a child.

In case I have not been clear enough: I DO NOT LIKE THIS PROPOSAL.

Because when I say diagnosis saves lives, I am not just talking about life or death. I’m talking about the fact that all autistic people deserve to live – not just to survive, but to live.

Autistic people – children, young people, adults – should not have their inalienable right to diagnosis and support denied because their autism does not present itself in a way that fits into the correct boxes. Autism is a wonderful, frustrating, amazing, beautiful, challenging, awesome spectrum, and we should be moving forward to embrace more people as our understanding of the spectrum broadens. We should not be tightening our circles, piling up our fences, and putting up ‘keep out’ signs to anyone who doesn’t automatically ‘fit’.

This is a terrifying and devastating step backwards. And they will have to go over my cold, yet still absolutely furious dead body in order to take it.

Author: QueerlyAutistic
Erin Ekins is a queer autistic writer, speaker and attempter of activism. She has an interest in all areas of autistic social justice, but has a particular passion for improving understanding and acceptance of the intersection of autism and queerness. She runs the blog and is the author of the upcoming book 'Queerly Autistic: The Ultimate Guide for LGBTQIA+ Teens on the Spectrum'. By day, she works in campaigning and influencing at a disability related charity, but, by night, she is inhabits a busy space between angry internet person and overly-excited fangirl.

2 thoughts on “In defence of diagnosis

  1. Oh, bless you. Thankfully, probably mainly due to the backlash, these plans have been dropped from any future talks. But it is still so scary that the talks were even happening. I always said I would write a detailed post about my road to diagnosis – this wasn’t how I intended to address it, but it felt like an emergency situation. Still potentially room for its own post in the future though. Thank you so much for reading, commenting and supporting. You are awesome! Xx

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