BBC In Depth: the ongoing battle to define autism

I don't know how it would work but from personal experience something as simple as reasonable adjustment by my employers could have been life changing for me as opposed to qualifying for PIP payments or blue badge entitlement.

Just adding a link here:

www.autism.org.uk/.../what-is-autism

'A lot of medical and professional literature refers to these differences as ‘restricted and repetitive behaviours and interests’ (RRBIs). They must be seen as affecting ‘everyday functioning’ for a diagnosis to be made'. 

Peter1970 said:

I do also think that diagnosis and disablement should be two separate things. I don't think a diagnosis of autism should automatically assign any disablement nor do I think the criteria of whether someone is disabled enough should be a factor in diagnosis of autism.

I'm not sure how that would work in practice, as the 'disablement' aspect of a diagnosis makes the criteria stricter and therefore fewer people are diagnosed ie it is diagnosed when the symptoms significantly impact your life.

If that was removed then wouldn't more people be diagnosed than already and what would be the significance of a diagnosis?

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

I've been pondering about sending a reply to the BBC - I am wary of the potential tap of being drawn into the "culture war" the sort of things that would potential spin off from it are just the sort of thing that my nervous system can't afford at present... and I think for this reason I would be very wary of encouraging others to do so unless they were really confident they have the resources to do.

Meanwhile, hopefully there are others who will and can do so.

Best wishes and thanks for the discussion all.

Phased

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.

I was mocked by some "mental butchers" as I call bad psychiatrists, I was told "it's just depression " "just tesuma" nothing serious and got treatment thst didn't help. Now at age 36 (2 years ago) the suspicion of autism appeared.  And then Uta Frith appeared.  I could say- pls, doctors, have some mercy and help me if anyone can. 

I agree with her about some individuals seeking attention and identity being influenced by social media. It's bad and it harms.

My knowledge and understanding of Autism is far from in-depth and based on my own experiences and the reading material I was able to consume. But, I found reading different accounts from various people from different walks of life that the same symptom may have a widely different appearance depending on the individual. Everybody is unique and people construct different strategies and methods to deal with the same problem.

Masking strategies can be very unique to different individuals which on the surface can manifest in completely different ways. Even things like stimming can be perceived very differently. Flicking a pen, humming or singing compared to hand flapping or rocking 

So in my limited knowledge in many cases the symptoms are often the same, its the manifestation based on the individual that is different.

Factor in sex, additional learning disabilities etc and the combinations can produce vastly different results.

I think this will pose a challenge for anyone trying to find a one size fits all definition 

I do also think that diagnosis and disablement should be two separate things. I don't think a diagnosis of autism should automatically assign any disablement nor do I think the criteria of whether someone is disabled enough should be a factor in diagnosis of autism.

Just my two cents

B said:

they speak about a different genetic profile for autism - I wonder how much research there is going on into that but also, could that really be a defining characteristic or simply one genetic profile leading to one diagnosis of one type of autism eg. with learning disabilities

The last thing I read was that there are potentially at least five types of autism, based on genetic differences. According to New Scientist and the original research paper, it wasn’t conclusive.  

Alien0n3arth said:

I don't really care, what label I get as long as it provides me with the support I need

I feel a bit like that too.

I don’t want to lose my ASD label, but it would be OK if my condition continued to be recognised and existing support remained.

Why is the BBC making such a big story out of Frith’s previously covered comments? 

Frith’s views have been discredited by leading autism researchers. Given that, why make it the big story when it’s not helpful to autistic people? 

I think it’s largely politically driven. The BBC itself has reported needing to save money so it has cut its production of services. This piece seems to me to be a money saving rehashing of old journalism in response to Channel 4’s recent programme, The Great ADHD Myth.

It’s also driven by a political desire to save money by cutting services to disabled people.

trying to present a massively documented public health crisis as a "culture war" is not a healthy way forward

rather than pitching one group of autistic people against another in the fight for resources - why not highlight that funding for all presentation profiles should be available in a wealthy nation?

why not give the numbers and evidence for the effect of allostatic load in order to highlight the need for funding for people who need it?

why not highlight that sub-typing protects all parts of the autistic spectrum?

So what lies behind it?

I'm increasingly worried about the institutional and political mecahnics that govern the BBC...

I don't really care, what label I get as long as it provides me with the support I need. Uta Frith doesn't care about people being generally misdiagnosed and mistreated,  she is only upset with the crowd on the spectrum, as she perceives that. If she tends to dismiss people like me, then I don't want to have to do anything with her. I was multiple times diagnosed,  misdiagnosed,  forced on meds, had s***de attempt and after 2 decades of being dismissed I still see the same. I'm exhausted. And the worst thing is that it seems like the fault for that mess is being put on people like me. Patients, who struggle. No, it's doctors and professors who made it, also Uta Frith. I just need a peace. 

So Uta Frith wants those who are late diagnosed to lose their diagnosis.

I have emailed my MRI scans to her which showed I believe increased areas for repetition in the brain and some supporting documents and my scores and story. I also sent her two short videos I did a year before diagnosis for a project. It was difficult doing those but it was for a project and I wanted her to perhaps comment on the blinking in the videos and also looking away from the camera. I said it was for education purposes and perhaps comment on the video. I wonder if she will. I read in the article some people have emailed them.

I saw a specialist in 2015 and they wrote down “aspergers” I knew someone who was diagnosed with aspergers before 2012 and they thought I was diagnosed to with autism or aspergers. I am glad that I know my case well from childhood and have my brain scans.  I have been confused at times as to which one I would have been diagnosed as I don’t have developmental checks on my records-but seemed to meet both criteria I have looked at. I did have notes as an infant medical wise though which was helpful.

May be the split from aspergers has been too difficult. It is seeming some celebrities diagnosed with autism today describing themselves as mild autism seem perhaps a bit different than those who were diagnosed aspergers before 2013. May be this is not the case and we cannot determine it is too a poor judge, but that is how it seems. I think the spectrum has got potentials and the DSM 6 will come out in 2030 so may be they feel they need to speak out on this now to.

They wrote that people get diagnosed for traits—it meant to be significantly affected and I hope that only happens.

This BBC article is journalism and not science - exactly why it is "unsettling"...

So it sets it out as if defining autism is some sort of "culture war" of equal balance - instead of presenting it as one person versus a huge swathe of evidence.  Diagnosis is based upon this - not just the evidence of a few social media "identity seekers"or the personal skepticism of those who for whatever reason can't recognise their own biases on this matter.

The article completely downplays the "allostatic load" of autism - that is to say the cumulative wear and tear on the brain and body that's the product of repeated and chronic stress associated with being autistic in a neurotypical dominated world.

Personally I find it upsetting because it completely downplays autistic burnout, systemic trauma etc. of the late diagnosed who lack support.

Pitting the spectrum against itself is really not helpful.

I think this is a media expression of the same sort of resistance I've personally experienced throughout my life.

The claim that it is "in depth" makes me want to swear too - it's tabloid journalism masquerading as analysis. 

A couple of takeaways for me.

We aren't diagnosed unless the symptoms are disabling, so we are disabled whatever label is chosen.

Also, we are united by all being under the umbrella of autism but if that were taken away (which I don't think would be the case for those of us already diagnosed) there wouldn't be a place, such as here, to meet, which would be rather tragic and very isolating.

Also, they speak about a different genetic profile for autism - I wonder how much research there is going on into that but also, could that really be a defining characteristic or simply one genetic profile leading to one diagnosis of one type of autism eg. with learning disabilities.

It's a Dame Uta Frith interview article basically, mainly for her views. A small token of other opinions, but it doesn't feel balanced, as they go back to her and she then dismisses them.  

Even the autisitc woman they spoke to at the end, her struggles feel trivialised. I think it was purposeful to end with the quote saying 'silly brain disease' (a quote from an autisitc woman saying she doesn't care what it's called as long as she gets support, but for skim readers, they will read the top saying people are making it up, then scroll down to that finishing quote, and it could be completely misunderstood and that could be their take-away from looking at the article.)