BBC In Depth: the ongoing battle to define autism

My stomach lurched when I saw that headline - knowing that I was now going to have to compulsively read every word of the article and get re-triggered in the process. I came here straight afterwards (my first time on here for a while), once again needing the sense of solidarity, community, and validation that is its own vital support when stuff like this comes at us. At the same time, I need to be sure that doing so isn't a 'head in the sand' moment, purely to soothe this re-intensified deep anxiety, but rather one that  will justify  my confidence in this community's oft-proven ability to reconcile personal testimony with factual complexities in a way that does its uncynical best to honour the truth. I see that that has already begun, with this thread already a vital figurative lifeline for those experiencing distress abut that article's construction. Coming so soon after Channel 4's click-bait show about the ADHD ‘myth’ (the title’s question mark was the smallest of fig leaves when they knew exactly what they were doing), this feels like the inevitable second part of a one-two gut punch to the neurodiverse population that is only going to fuel the culture wars further even as it pays lip-service to the notion of being above that sort of conduct because it’s dressed up in a bit of journalese.

I'm late diagnosed (Jan 2022) and in my forties - it was an expensive private diagnosis that I couldn't afford financially (I borrowed, then struggled to pay back), but as the waiting list was 4 years for an NHS diagnosis then nor could I emotionally/mentally afford not to finally know why I couldn't make sense of my lifelong challenges. The distress was very real, understanding (and the validation of a formal diagnosis – not everyone needs one to be certain, and more power to them) brought relief, understanding, a vital missing jigsaw piece that explained so very much, even as (of course) all challenges of functioning in a neurotypically-skewed world remain – it’s just structurally inevitable but no less difficult for all that.

Anyway, here I am, 4 and a half years on from a thorough and rigorous process of diagnosis/confirmation, and yet something like this article can still spike in me as sickening a surge of existential crisis and deep ‘imposter syndrome’ anxiety as I’ve ever had.

It’s interesting how this renewed churn of anxiety has bookended my week. On Monday, a stray podcast comment (cognitively distorted a little by the background radiation of what Channel 4’s ‘myth’ schtick had stirred up in the ether) caused me to go into full hyperfixation mode. Unable to sleep, I went into a full on-line deep dive seeking out the answers to questions that kept mutating: Could someone in the broader phenotype end up with an accidental Level 1 diagnosis? What truly encompasses ‘clinical support’ in level 1? Does my talking therapy organically include enough of a CBT subset to meet the ‘clinical support’ definition? And so on, and so forth. 1 am madness really, and I got so burned out on chasing ultimate and irrefutable certainties that when sleep came it was like a rescue, an intervention.

The next morning, I was back on the fixation within a minute of waking. An hour later, my very perceptive, very understanding, fiancée said ‘OK, what is it you’re obsessing about, I can see something’s taking all your focus’ (words to that effect)… and so I told her.

She said that there is no question that I’m autistic, that she sees it every day. She reminded me that she held me during a recent intense meltdown where I’d gone almost non-verbal. That she’s done so before. She pointed out that the very obsessive intensity with which I’d been seeking renewed assurance of a diagnosis already formally on paper was itself the latest evidence of a deeply monotropically focussed mind, one extreme of the autistic inertia lever-throw options. And a dozen other things that leave no room for doubt. She gently suggested that I speak to my therapist (not for the first time) about it.

 I did so mid-week. My therapist gently pointed out that those who diagnosed my aut'ism' are phsychiatrists with all the required qualifications, experience, affiliations, standards required to really know of what they spoke when they confirmed I’m Level One autistic. She also said that she sees many things in me, continually, that back up the diagnosis. Both conversations brought me back to a place of peace, renewed certainty. At the same time, I felt desperately bad for anyone out there (in here!) who didn’t have such independently re-validating voices taking them safely through this most recent public assault on the validity of our hard-won claim to an autistic identity. Maybe for one or two, reading this gives them something of that support vicariously? It would be nice to think so. 

I feel kind of silly that despite all of that mental and emotional energy being expended this week, and the hard-won renewed assurance of my indisputably real autistic identity, all it took for that fortress to almost fall again was the tone of a notionally (but not actually) balanced BBC article that as others on here have said will allow the unsympathetic skim-readers out there to  roll their eyes and re-entrench themselves into attitudes that only take us backwards. All rather upsetting, but we must rise above it and continue to function the best we can. Feeling more scrutinised, more distrusted, yet somehow (for those of us not on Uta Frith’s map at least) more invisible and irrelevant too.

My stomach lurched when I saw that headline - knowing that I was now going to have to compulsively read every word of the article and get re-triggered in the process. I came here straight afterwards (my first time on here for a while), once again needing the sense of solidarity, community, and validation that is its own vital support when stuff like this comes at us. At the same time, I need to be sure that doing so isn't a 'head in the sand' moment, purely to soothe this re-intensified deep anxiety, but rather one that  will justify  my confidence in this community's oft-proven ability to reconcile personal testimony with factual complexities in a way that does its uncynical best to honour the truth. I see that that has already begun, with this thread already a vital figurative lifeline for those experiencing distress abut that article's construction. Coming so soon after Channel 4's click-bait show about the ADHD ‘myth’ (the title’s question mark was the smallest of fig leaves when they knew exactly what they were doing), this feels like the inevitable second part of a one-two gut punch to the neurodiverse population that is only going to fuel the culture wars further even as it pays lip-service to the notion of being above that sort of conduct because it’s dressed up in a bit of journalese.

I'm late diagnosed (Jan 2022) and in my forties - it was an expensive private diagnosis that I couldn't afford financially (I borrowed, then struggled to pay back), but as the waiting list was 4 years for an NHS diagnosis then nor could I emotionally/mentally afford not to finally know why I couldn't make sense of my lifelong challenges. The distress was very real, understanding (and the validation of a formal diagnosis – not everyone needs one to be certain, and more power to them) brought relief, understanding, a vital missing jigsaw piece that explained so very much, even as (of course) all challenges of functioning in a neurotypically-skewed world remain – it’s just structurally inevitable but no less difficult for all that.

Anyway, here I am, 4 and a half years on from a thorough and rigorous process of diagnosis/confirmation, and yet something like this article can still spike in me as sickening a surge of existential crisis and deep ‘imposter syndrome’ anxiety as I’ve ever had.

It’s interesting how this renewed churn of anxiety has bookended my week. On Monday, a stray podcast comment (cognitively distorted a little by the background radiation of what Channel 4’s ‘myth’ schtick had stirred up in the ether) caused me to go into full hyperfixation mode. Unable to sleep, I went into a full on-line deep dive seeking out the answers to questions that kept mutating: Could someone in the broader phenotype end up with an accidental Level 1 diagnosis? What truly encompasses ‘clinical support’ in level 1? Does my talking therapy organically include enough of a CBT subset to meet the ‘clinical support’ definition? And so on, and so forth. 1 am madness really, and I got so burned out on chasing ultimate and irrefutable certainties that when sleep came it was like a rescue, an intervention.

The next morning, I was back on the fixation within a minute of waking. An hour later, my very perceptive, very understanding, fiancée said ‘OK, what is it you’re obsessing about, I can see something’s taking all your focus’ (words to that effect)… and so I told her.

She said that there is no question that I’m autistic, that she sees it every day. She reminded me that she held me during a recent intense meltdown where I’d gone almost non-verbal. That she’s done so before. She pointed out that the very obsessive intensity with which I’d been seeking renewed assurance of a diagnosis already formally on paper was itself the latest evidence of a deeply monotropically focussed mind, one extreme of the autistic inertia lever-throw options. And a dozen other things that leave no room for doubt. She gently suggested that I speak to my therapist (not for the first time) about it.

 I did so mid-week. My therapist gently pointed out that those who diagnosed my aut'ism' are phsychiatrists with all the required qualifications, experience, affiliations, standards required to really know of what they spoke when they confirmed I’m Level One autistic. She also said that she sees many things in me, continually, that back up the diagnosis. Both conversations brought me back to a place of peace, renewed certainty. At the same time, I felt desperately bad for anyone out there (in here!) who didn’t have such independently re-validating voices taking them safely through this most recent public assault on the validity of our hard-won claim to an autistic identity. Maybe for one or two, reading this gives them something of that support vicariously? It would be nice to think so. 

I feel kind of silly that despite all of that mental and emotional energy being expended this week, and the hard-won renewed assurance of my indisputably real autistic identity, all it took for that fortress to almost fall again was the tone of a notionally (but not actually) balanced BBC article that as others on here have said will allow the unsympathetic skim-readers out there to  roll their eyes and re-entrench themselves into attitudes that only take us backwards. All rather upsetting, but we must rise above it and continue to function the best we can. Feeling more scrutinised, more distrusted, yet somehow (for those of us not on Uta Frith’s map at least) more invisible and irrelevant too.

yep, this article made me use cold, objective, empirical evidence to validate my lived experience and get rid of the sort of internalised shame that it stirred up Shardovan - I would say that it is a "nasty" one...

I'm trying to rise above it and continue to function as best I can too.

Best wishes to you and all others likewise

Phased