To scream from the rooftops that getting an autism diagnosis is not a label

[Harrysutton]

I keep hearing and reading people spout the ridiculously naive and damaging line that getting a diagnosis of neurodivergence is giving a person a label.

AIBU to say that it's absolutely nothing about giving someone a label. It's actually giving a diagnosis. Funnily enough, with or without the diagnosis the person is still autistic/ nd and diagnosis can be hugely helpful in the person understanding themselves and their family understanding them too.

You are right, I don't know your child. But generally speaking 13 years olds don't possess the maturity and understanding that an adult does. That's why we still parent them overall. I'm not trying to be critical or personally attack you, but I am allowed to have a different POV regarding assessment where suspicions lie.

No skin in this game, but just a pedantic point of the comparisons to being diagnosed with being pregnant or having diabetes (compared with being diagnosed autistic), both of these are diagnosed by a chemical test and until confirmed by that test, the person is suspected of being pregnant/diabetic so not quite the same as an autism diagnosis (at this point in time anyway)

I fully agree OP. ‘Label’ is a negative association, one only given to those diagnosed with ND conditions. I’ve never heard of someone with Downs Syndrome, Cerebral Palsy or any other condition that affect a person in an individual way be called a label rather than diagnosis. Imagine if someone had an acquired brain injury, dementia or a stroke being labeled as having such, rather than a diagnosis that recognises that their brain is now different.

The crux of the issue is many people have no idea what autism is. It doesn’t mean a lined spectrum, it doesn’t mean that a child or their family is living in constant despair because a child is high support needs, it has nothing to do with how capable they seem at education or that they are very intelligent despite having ASD. In fact, most of the failed people* with autism are those who’s greater academic abilities are focused on more than their need for support with their disability.

Edit: this reads like Im saying the individuals failed, I’d like to clarify that they’re failed in being given adequate support because the academic abilities in school are put first.

Completely disagree. It helps enormously to understand and accept the behaviour of someone who is ND. My mate was highly offended by what a man said to her. Once she knew he was ND she understood why he had not realised what he said was unacceptable, and they went on to became really good mates.

I’ve had a similar experience. Some ND people behave in ways that seem rude or odd to NT people. Once you know they are ND you realise they are not being unpleasant in the way a NT person would if they did similar.

Understanding someone is surely key to getting along with them.

I'm torn on this and think that both things can be true at the same time, certainly for adhd, if not for autism. My DD is diagnosed with ADHD and she takes medication to manage the symptoms, so I am not some kind of denier or minimiser.
But I also believe that in a different - and in my view better - society, she wouldn't need that medication and in fact her ADHD would be a plus point instead of something that causes her to struggle. So in some ways I think it is a 'label' that modern society gives to people who struggle to cope with modern society. With the over-stimulation (Internet, lights, noise), the need to confine yourself to small spaces (classrooms, houses, offices), the lauding of the intellectual (9s at gcse, uni, having a 'good profession') versus the physical and technical (apprenticeships, having a trade).
Obviously I'm biased because I think my DD is amazing (and I also don't think 'quirky' or eccentric, or even 'odd' are rude. I take them as compliments) but I do think it's modern society that in some cases causes a need to label.

@Namechangeforadhd well said!

And getting any kind of help at school these days is an utter label-rama.

"EHCP" is one label that really does make a difference.

@Calamitousness

potentially people,let’s face it, like you who would think he’s less capable of whatever he chose to do.

People like me?

Why would I think your son having a diagnosis would make him less capable? I think you have made a massive assumption there based on absolutely nothing. I believe that assessment should take place for any child when suspicions are raised regarding their needs, be it a ND query or a physical illness. That is not indicative of how I would regard your child if he had a diagnosis.

What it is a a great example of a parent who fears what 'my' thought of their child would be so much that they are happy to sit by and not have their child be assessed.

I really don't know why you jumped to think I would apply a negative thought to your son if he was diagnosed - i definitely wouldn't. I am a late diagnosed autistic also with ADHD and fully understand the variance in both conditions.

Have not read all of thread so apologies if this has been said. I think some diagnosis in and of themselves can be perceived as negative e.g. X is diabetic can have conjure comments around their diet or someone is diagnosed as an addict of some description can conjure up negative comments around discipline etc...

I am awaiting assessment from one of my DC who has been diagnosed with a couple of other conditions (equally misunderstood) and I strongly suspect other in the family would benefit from a diagnosis. The hope is that the diagnosis will bring with it understanding and strategies.

I have managed quite a few ND people and they have helped me understand things they struggle with and their strengths. As someone earlier said some of those strengths are invaluable in the workplace.

I am pretty certain I have dyslexia. One of my kids does and I have a lot of sane traits. I really struggle with detail but find strategic thinking really easy. I see connections where others don't. For years I was ashamed of my issues and it wasn't until I was in my 30s that I could see my strengths. A diagnosis would have helped I am sure and yet I don't pursue a diagnosis now as fundamentally I suspect people would see it as an issue. A label if you will.

🤣 So true!

In an ideal world we would not need to label/diagnose conditions such as autism, ADHD, dyslexia etc. People’s various needs would be identified and properly supported whatever they were, whoever had them, and regardless of how severe they were with no stigma attached, and people’s strengths and preferred ways of living, learning and working supported. We do not live in a perfect or even near perfect world in this regard and so the pragmatic approach is to continue labelling/diagnosing people.

Edited to say: Supported without resorting to labelling people with over-arching best fit conditions.

And the labelling is currently needed in part due to the bun fight for support.

@fizzymizzy sure your allowed an opinion. It doesn’t make it valid or worthy of listening to though.
What makes me say people like you, is you assumed that he couldn’t make an informed decision for himself. Of course he could. He’s a smart boy/ man.

I think arguably it is both

People who use the word "label" in a dismissive way, I just wouldn't give them any head space. You get the same thing about mh diagnoses. Eventually I learned to just block it out.
A counsellor I saw a few years ago said about my mh diagnoses, you're too focused on these labels you've been given. I never went back after that. She clearly had no clue what she was on about.
Some people say labelled like this as if, if you stop thinking of yourself this way, then you won't feel/ behave/ be that way anymore because they fundamentally don't understand and think the "label" is bs. There's very little if anything you can do to get these people to understand ime.
To me, a diagnosis should come with a plan of action for how to treat/ manage something because it's been causing you significant enough problems that you need professional help. If this doesn't follow, then it might as well just be a label. In my mind I can actually imagine it like putting something in a box, sticking a label on it, putting it on a shelf and forgetting all about it. What's the point of that?
But I think as a label, it can be useful for some people, to better understand and accept themselves.
So, I don't think calling it either a diagnosis or a label is wrong but I do think there's a distinction. And I think some people use the word label to be dismissive but it's out of ignorance so fuck them.

Being smart doesn't make a 13 year old able to make adult decisions though, and the choice of pursuing an assessment for a lifelong condition is an adult decision. I'm not saying he isn't clever, it's not about that.

It's very difficult to explain this position without it sounding like I'm denying or minimising neurodiversity. I'm not - my wonderful DD has suffered very badly - but I think the issue comes because when a Dr diagnoses an illness, there are clearer diagnostic tools and if the illness is present, it is something which either is or isn't curable.
ADHD is not an illness, but to some extent in reality a 'label' (or just 'name' if that's less offensive to people) for feelings, reactions, behaviours which in my view are perfectly understandable in the modern world, but make fitting into and coping with the modern world difficult.
Feeling overwhelmed by fundamentally very unnatural stimuli, being unable to focus on things which until only a few thousand years ago didn't matter at all, having very intense emotions in the face of having to deal with so many other humans, are in my view perfectly understandable reactions. As humans we haven't genetically adapted to this very new world. I'm not sure we can. I'm surprised more people don't show the traits which we currently call 'ADHD' frankly. Mind you I'm probably ND myself so I guess I would think it's 'normal' and it's the rest of the world that's missing something 😂

I do understand what you are saying @Namechangeforadhd.

However, being a secondary teacher I know a lot of kids my DD's age and while there are others like her, she's definitely outside the norm. The "label" is helpful so DH and I know we're not pathetic parents/going mad, and in retrospect DH's struggles have made a heck of a lot more sense.

@Phineyj
Oh yes I completely agree. My DD has definitely been helped by the structures put in place at school. I suppose what I'm trying to say is that there are 2 levels. 1: in the real world we have to live in and cope with, those diagnosed with ADHD can then get help such as medication or support at school. So a 'label' is good for that. But 2. Theres the wider (and obviously impossible) that living in the world necessitates this kind of compliance with things that are actually really unnatural for humans. Without this, people with ADHD would just be super cool people, not labelled people!
Various traits such as very high levels of creativity, energy and empathy, hyper-focus, even odd things like being very aware of physical feelings/instincts are actually skills which are vital to human society. It's just that in this particular human society of the last 100 years or so, and definitely the last 30 years or so, they're skills that also cause problems.

I came across this quote recently which kind of sums up the 'label' thing for me, as someone in my 30s realising that I'm probably autistic and that might be why I constantly feel like I fail at life.

“Why do you need a label? Because there is comfort in knowing you are a normal zebra, not a strange horse. You can’t find community with other zebras if you don’t know where you belong. It is impossible for a zebra to be happy or healthy spending its life feeling like a failed horse."

As a teacher, I find the idea of not wanting a label for your child very difficult. There's a few children I've taught recently who clearly have some kind of need (I accept I'm not qualified to diagnose, but I'm talking about older teenagers who struggle with day to day activities that their peers can manage easily). The parents don't want a label, so it's hard to put appropriate support in place. However, if/when something goes wrong, it's all our fault.

In at least one case, I think the young person was actually at risk- for example he finds the end of the school day very overwhelming, and this sometimes leads to him getting on the wrong bus (public bus so his bus pass still works and no-one is checking). He then obviously ended up in completely the wrong town/village, which is scary/distressing for him! He also really struggled with time, e.g. cannot remember deadlines/appointments and doesn't seem to have much idea of how long a task will take him. He's in our sixth form now, and really struggling with the increased independence and expectation of independent learning. I worry about his ability to hold down a job in the future, or live independently at university.

His parents, however, are against getting him a diagnosis because it's a "label" so he will get no support with his transition to the next step and there is not much we can do. He is academically able, but really struggling with the requirement to produce coursework for certain subjects, and again, he's unlikely to achieve his potential. Despite this, historically, they have wanted the school to put support in place- but we can't really provide things like TA support unless parents will allow us to pursue an EHCP, which they wouldn't.

DD has an incredibly well developed sense of smell. She's a bit prone to exclaim, this (random thing) smells like granny/the green trousers/the old car. I honestly think she can detect some kind of compounds in smells the rest of us can't, like a sniffer dog.

She can also say what kind of film music comes from, even when she hasn't heard it before or seen the film e.g. Thus Spake Zarathustra. "Space"!

She was explaining the jokes on Private Eye covers to me by age 8 ("Boris brings his own boos. Oh like booze. And people boo him. Booo. But why do people bring booze? Where to?")

She doesn't fit in the box for school academics though and if she had a label it'd say Handle With Care.

Firstly, I disagree with the poster who said being autistic is like being pregnant. There are not different degrees of pregnancy: it’s binary - you either have a fetus growing or you don’t and it can be proven definitively. You cannot prove autism, there is a spectrum (unlike pregnancy), it is subjective on its diagnosis, and it looks totally different in different people.

as part of human nature, we like to organise and put things in categories they can easily understand and deal with. Sadly still, many people without neurodivergence in their lives do not learn how it shows up so very differently. If a ‘label’ of ADHD/autism is going to be stamped on someone, which will happen in some cases, then I think it is damaging to share widely where the person’s diagnosis is not outwardly obvious (e.g due to masking, internalising and cognitively coping). A diagnosis is full of complex interacting elements that is part of what makes someone who they are explains why they may struggle with some things (but excel in other areas). It help people to develop self acceptance, self understanding and to seeking support when needed. To others it may be a label to add to someone so they can put them in a specific category of people that have the same ‘label’ and associate all sorts of limits and preconceptions as a result.

Or, on the other hand, sharing a diagnosis can lead to denial/rejection by others due to the individual not fitting the predetermined label of the category this person has created the label for.

I am nodding along in agreement with all this. Thank you for articulating so well. I'm in a similar position and have often thought how the world has changed but as a species, we struggle to keep up.

@fizzymizzy I really do not understand you. Why do you keep saying my son didn’t have the ability to make his own informed decisions. Firstly he wasn’t 13!!! Why do you keep saying that. He was older and he discussed it with us, his parents and made his own informed decision. You are not able to judge on his decision making ability. Why do you not see that?

You cannot prove autism

What bollocks.

Of course you can prove autism. It's called the triad of impairments. Irrespective of your support needs, to be diagnosed as autistic you have to have met the criteria for the triad of impairments.

I wanted to say that too about the pregnancy thing. It is a binary state you are or you aren't

There are lots of illnesses which are binary eg epilepsy, pneumonia and lots which depend on where we put a cut off on a spectrum.

ADHD and autism are spectrum disorders. There is nothing inherently wrong or stigmatising about that so are hypertension and diabetes. There is a spectrum of blood pressure and blood sugar values and we put a cut off point on those and say you have a disease if you have values over the cut off point. It is the same for autism and ADHD test scores.

I find this binary 'I am ND you are NT' thing to defy logic. It's just I am on one side of a diagnostic cut off line and you are on the other. Human beings have a spectrum of ways of thinking, emotions and behaviour.

I don't at all deny that having a diagnosis can be helpful to someone in many ways and I encourage people to seek one if they find it helpful but equally it does not sum up or explain everything about a person. Their unique characteristics and life experiences also matter hugely and sometimes it seems these days as though everything needs to be understood by a diagnosis. In mental health and psychology a formulation is often seen as more helpful than a diagnosis and I agree with that point of view.

I imagine the poster who said you can't prove it meant there is no bio marker or biological test like a blood test or a scan that can definitely give you a yes or no answer (as with many mental illnesses and neurological disorders)