'If it helps you run with it' and other unhelpful responses from professionals
An imaginary conversation with the therapist who questioned my diagnosis.
“If it's helpful to you, run with it.”
“Take it with a pinch of salt.”
“There's a danger of overdiagnosis at the moment.”
These are all things my therapist said to me on hearing that I have an Autism diagnosis.
“Where did you get it?” he asked first, and I felt a little sinking in my stomach. Now we must defend ourselves.
“I got it privately, because the waiting list was years long,” I said, matter-ofofactly, though it felt like I was saying, “I invented it.”
“Maybe I wouldn’t have been diagnosed on the NHS,” I added, like it made no odds to me, “because the diagnostic tools are quite biased towards Autistic white boys who like trains.”
I think that’s when he added his comment about overdiagnosis, and I just had to shake it off.
It was clear that he didn't believe labeling was useful in the way that I have come to believe it is, and so I quickly moved the subject on.
Perhaps he is a person who asks, ‘why do you need the label?’ And maybe that is a fair question. But it felt dismissive and intrusive in the moment. I hadn’t asked his opinion. We weren’t there to discuss so-called neurodivergence.
From my perspective, and this might sound ott, but from my perspective, it felt like him calling into question my sexuality or nationality. I had stated a fact about myself, and he was for some odd reason questioning it.
There’s probably lots to unpack there, and I’m interested in other people’s takes on it. It’s something I’d like to explore in this space, more generally.
For saying it felt intrusive and identity-challenging, I’m impressed with myself for not getting hung up on the topic within the therapeutic situation. It seemed we likely disagreed and I didn’t want to waste an expensive therapy session in intellectual debate, which is, for this intellectualize, a victory! I’m also pleased with my ability (an effort, I admit) to not simply write him off as ignorant for having differing beliefs to me.
Maybe this is evidence that I am integrating these new pieces of understanding (ADHD/Autism, I mean) into my ideas about myself.
Social psychologist
wrote a fascinating piece recently about the different stages of accepting a diagnosis of Autism.
He suggests Questioning, Obsession (about autism), Obsession (about self), Powerlessness, Autism supremacy, Resentment, Grief, Exploration, Self-advocacy, Appreciation and Integration as key touchstone phases, and writes:
“Rather than viewing them as stages that progress in a linear fashion, we can see them instead as common psychological defenses that emerge when a person is having a hard time reconciling their disability with their beliefs about who they should be”
Also that:
“Important internal work is happening when a person seems to be “caught” in any particular phase. Some phases are needed corrections for society’s anti-disability stigma — such as the phase where a person believes that Autism makes them inherently superior to allistics. Others are corrections for those corrections, a hypothesis and antithesis that gradually resolve into a synthesis within the disabled person’s life.”
I recognise these different phases, and have ricocheted between them, sometimes denying my diagnosis and other times being furious when other people aren’t able to acknowledge it. It made me laugh to read about Autism Supremacy, as I remember that phase well. Jumping out my skin any time someone walks in the room is a super power!
When stuck in grief or resentment I might have felt wounded by my therapist’s comments, rather than mildly annoyed, and motivated to write an essay exploring why.
I'm educated enough to know we are probably both right, and I’d like to know more about his perspective. Maybe I’ll email him (would that be appropriate?) But I've derailed so many therapy sessions with intellectual debate about non-central issues that I think my live response - something like “let's not get into that here” (meaning during this expensive hour, you’re billing, dude) - was valid.
But I’d like to respond to his questions, real and imaginary. To better understand why his words upset and destabilised me, to the extent they did, and to consider, why I might take my diagnoses with a grain of salt.
So, here goes, Paul. My responses to the questions you asked and some that you didn’t.
Me: I don’t need a diagnosis, but it is meaningful and helpful to me because ‘ADHD and Autism’ are better for my self-esteem than ‘lazy’ and ‘useless’ ever were. It helps me, every day, when I find myself wondering shamefully, What’s wrong with me, to be able to remind myself that I have ADHD and Autism.
And sure, maybe it would be better if I could just not wonder shamefully what is wrong with me all the time. But to do that, I would have to become more competent in the world than I have ever yet shown myself to be on a daily basis.
Paul: But isn’t that self-defeating?
Me: Maybe. I mean, that’s a question I level at myself frequently… But it’s not helpful or loving to hold myself to a higher standard than I can on average adhere to. It’s like you expecting yourself to respect other people’s self image when it doesn’t chime with how you are perceiving them.
Paul: Ouch! Zinger!
Me: I know, sorry, man. But listen. Seeking and accepting diagnoses doesn’t mean I don’t try. I try at least as hard as most people I know. Harder, even, than some! But I still fail a lot. And I find the fact that I am legally disabled comforting.
Paul: It sounds like you’re being very hard on yourself.
Me: Yes, that’s true! But my understanding of ADHD and Autism helps me to be gentler.
Paul: So could you at least try to take the labels with a grain of salt?
Me: I guess so. Though I’m not sure what that means, to be honest. With a little more flavour to swallow them down? Sure! Great suggestion.
Paul: I just don't want you to be held back by your diagnosis. You seem very capable and I don’t like to see you thinking of yourself as disabled.
Me: Thank you. I understand that. I struggle with this too. But somehow I’ve found myself freed up by the self-understanding that ‘my labels’ have brought. I find they allow me to focus on my strengths and ask for help around my weaknesses. And if all else fails, and I mess it up, because in the end, we all have to do tasks we’re less skilled at, all the time, I can comfort myself over how absurdly long it took, because I understand why. And I can laugh about the comedy of errors that ensued with my other ADHD/Autism understanding friends who get it.
Paul: I just worry that we are pathologising normal human difference…
Me: I know what you mean. Capitalism isn’t humane. The system doesn’t work for anyone, maybe. (Jeff Bezos?) But people really do function at different levels. I can happily write and research a decent 3000-word essay pretty quickly, but would struggle to input a list of dates and numbers into administrative software. I would make a lot of mistakes, be very slow, and my head would ache. I also cannot think something through without pen and paper or navigate to a basic level. This means logistics is a constant challenge. If you saw how many times I get lost a week, and how often I lose my belongings, you might agree that there is something afoot.
Paul: But everyone makes mistakes like that sometimes.
Me: Sure, sometimes. But I suppose it’s the frequency that leads to diagnosis. Because I do things like this most days. I pick up a butter knife only to find in my hand a sieve. Or I put down a sharp knife for a second only to have it disappear for forty-five minutes.
I spend hours every week searching for my phone, purse, bag, laptop, etc.
Paul: So can you take your diagnoses with a pinch of salt?
Me: Sometimes I probably do.
Certainly, I've wondered many times whether getting the diagnoses has been ‘worth it’. By which I suppose I mean, has it positively impacted my life? Honestly, it's a mixed bag, Paul. Thanks for caring about me.
I notice that it is men who have questioned my diagnosis in this way. And also that it is when there is an influx of women being diagnosed, that ‘diagnosis begins to lose all meaning’.
Pros of diagnosis
Increased self-compassion when I struggle with apparently simple life things like wearing right clothes for weather, packing a bag for an activity, leaving house, generally, answering a message appropriately, following instructions for administrative tasks, etc.
Cameraderie with others who make similar infuriating mistakes when out in the world, i.e. picking up and pocketing someone else’s keys, forgetting to charge my phone every night, so it runs out at inopportune moments regularly, getting lost endlessly.
I forget to charge my phone most days. How? I don't understand. And I lose my phone and keys most days. More than once. I leave the house without the right items most days.
Cons of diagnosis
People question its validity and I feel I must explain myself in a way others don’t have to.
People imply I am part of ‘a problem of overdiagnosis’ and I feel guilty for somehow damaging the fabric of society.
What have I forgotten? What are your pros and cons of diagnosis? What do you say if people make you feel defensive about it? Oh, and AITA?
Good things
Film: Better Man - Robbie Williams as a chimp is a delight, and the film had me dorkily dancing in my cinema seat, somehow feeling like a rock legend.
Non-fiction: Patricia Highsmith, Plotting and Writing Suspense Fiction - the more I read of her, the more I feel like a different species of writer, but to read her advice nonetheless is inspiring
Meme:
Chelsey Flood is the author of award-winning novels Infinite Sky and Nightwanderers, and a senior lecturer in creative writing at UWE. She is currently working on a literary memoir about getting sober and then finding out she’s autistic and her first domestic thriller.