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

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.

I think arguably it is both

@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.

🤣 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.

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.

@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.

@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.

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.

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 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.

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)

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.

I meant to quote ObelixTheGauls post, not yours, sorry. No idea how you change that! 😆

Which is why I think we need to get away from the binary thinking of either being autistic or not being. It is entirely possible that someone might not meet the diagnostic criteria for autism (possibly due to having much more severe difficulties in some areas than others) yet have higher overall needs and less ability to function unaided in society than someone with a diagnosis.

I was told in the past, it's not labelling your child it's understanding your child and I think that's a perfect answer.
Proud Mama of 2 x ND children who are absolutely excelling in several areas of their lives but yes require a few supports/accommodations along with that.

@fizzymizzy well that’s a really uninformed and totally untrue view of my child that you don’t know. He was a teenager at the time. Is very intelligent and had considered all the options for him and what it would mean long term in employment etc. He did not want adaptions or potentially people,let’s face it, like you who would think he’s less capable of whatever he chose to do.
And this is the problem (in his opinion). Autism is such a spectrum, from being unable to live without support and care ever, and people who are successful in their chosen field, married or single but living their best lives with friends/family around them. Yet one diagnosis fits all.

The term diagnosis allows for variation in presentation. The term label doesn't. Which is why the vast majority of people who use it are also "baffled" that autistic people are not all the same (like their hairdresser's gardener's dogwalker's kid).

@Kentuckycriedfrickin a loud cheer for all of your post, but particularly this:
"the two neurotypes are neurotypical (NT) and neurodivergent (ND), both are normal. The world is not divided into 'normal' people and 'not normal' people, neurodivergent people are not aliens or a different species"
Well said doesn't even cover how well said that is. And how important it is for schools to hear it, for parents to hear it, for people generally to hear it.

DH said the word is generally used in a dismissive way so no, he does not like it.

Your last paragraph makes no sense in the context of what you originally started saying. I found your views interesting and agreed with a lot of them, until the last part.

”I’ve read stories about autistic people being sectioned and tortured” is bullshit and scaremongering. You’ve diagnosed yourself and got to the age of 50 doing just fine, so why you’d think that there’s a chance you could be sectioned simply because you got an official diagnosis is crackers. It’s that last part of your thinking that would make you more likely to be sectioned, nothing to do with autism.

Finally I have seen a documentary where someone’s adult child was placed in a care setting and the parents struggled to get them out. The did have autism, however they also had a severe and profound learning disability, so whilst they were in their 30’s, they had a mental age of 4/5. They couldn’t look after themselves and keep themselves safe - in the same way 4/5 year can’t. The parents probably to meet the needs of their severely disabled adult son so he was placed in care.

I agree. I know someone who is refusing all support for their very likely neurodivergent kid because they don't want them to have a label.

I really agree with this.

I wholeheartedly agree with this OP, I’m so sick of hearing this. There is still so much ignorance around ND.

I think it completely depends on if a diagnosis would help or not.
A family member is very mildly on the spectrum (medical specialists words and also my dh is a Dr who also said it), it wouldn't benefit him to have been told he was though because it doesn't affect his day to day life.
If he was told and formally diagnosed he would absolutely hold onto the diagnosis/label and use it to define himself and limit himself from things.
Dr's have agreed and also his parents that he doesn't require any help with anything and they monitor him closely but now he's older there's nothing that worries them at all.( initially he had anxiety and sleep disturbances that made them reach out to the Dr but as he's got older these have resolved).

I do know that everyone is so different and some children/adults would benefit so highly from a formal diagnosis.

My sister in law was diagnosed as an adult and she said it was the best thing ever as in childhood she felt different and was told she was shy and weird and it affected her badly. It would have helped immensely had she been diagnosed earlier.

Catza puts the whole label thing for physical vs mental health/neurodevelopmental conditions far better than I did. I do, however, fundamentally disagree with you that you can’t be borderline autistic. That’s okay though, we do not have to have the same view. Your pregnancy analogy is similar to a physical condition like diabetes. I think brains and categorising them is a bit less binary than that, and as a result very subjective. I don’t dispute that autistic people mask and learn coping/fitting in strategies to different degrees, but this is from a different starting place for each person. It’s also not just people who are autistic who mask. People with dementia, amnesia etc will also do so, as do people who do not have a diagnosis of autism, and would never think of seeking one. I, for example, never realised I did mask until I had my child, but I very much do.