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.

Your poor DD. I hope you took it to the head and the awful child that called your DD that name got reprimanded!

As an autistic person, I tend to find most things that neurotypicals say about autism to be irritating.

I have found my diagnosis helpful in some ways. I have found that my narcissistic mother uses it as a weapon i.e. if I challenge any of her behaviours she says “Well you think differently to other people…”.

I find this so complicated as a teacher, because YES it can be a label but so can ANY OTHER INFORMATION about a child!

Not every child with dyslexia needs the same intervention, not every child with low confidence needs the same intervention and not every child with ASD needs the same intervention! Children are still individuals with individual needs regardless of ASD diagnosis or not

I think there is a fundamental misunderstanding of the term "neurodiversity" to assume that there is a norm and anything outside of this is divergent.
Neurodiversity describes all of us!

I always knew there was something different about me. I knew I was "weird" in many ways. I never let on.

Weird is my descriptor of my own self. I don’t apply it to others as that is not my right before anybody starts having a pop at me. Is just how I feel about me and me alone.

I've done the recommended, by NHS practitioners, online tests. They came out yes, I am autistic and with quite a high score. When asked about it, I lied and said the opposite. I've experienced medical professionals trying to use me getting a little bit upset to override my wishes. I'm not giving them any more ammunition to use to control me. I'm functioning, highly so, and set in my ways with many coping mechanisms that I've developed in my five decades.

I don't want no label nor a diagnosis that will enable medics, albeit well-meaning ones, to take away my autonomy, blow my life to pieces and turn my private quiet existence to shit.

I've read the stories about autistic people being sectioned and basically tortured. Sectioned despite the fact autism, in of itself, does not respond to treatment designed for mental illness.

Indeed this.

The issue I have is that the school system doesn’t work for nd dc but once in the work place, many people with autism will find their niche and flourish. I work with lots of amazing people and a high percentage are autistic - data analysis, medical consultants etc. fascinatingly different in their approach but wonderful and respected in their roles. We have a neurodivergent network and they are wonderful for feedback so long as you can take blunt and honest responses. The strengths of autism are not brought out in our school system though.

A very high percentage of autistic adults are not in employment though. You paint a pretty picture but the reality is much harsher.

I do appreciate that but perhaps less would have mh issues if the school system suited them better.

I do appreciate that but perhaps less would have mh issues if the school system suited them better.

I don't doubt that.

Agree.

I think there's a fear of being stigmatised, whereas for some, "naughty" reads as "spirited"/ "independent"/ "strong willed", and weird reads as "unique" / "not one of the sheeple".

I have every letter known to man after my name at this stage and still get told I am labelling myself. This board is a disgrace with asd bashing threads too so sometimes it is pointless engaging but yes it is a diagnosis. Labels are for the twats that think otherwise.

My ds has autism, in truth I wish he didn't as his life would be easier and he would be able to have more experiences or a fuller life (level 4 autism- what used to be called classical/ severe/ low functioning).

To me it is just a diagnosis, a label. It could be that it was coolitous or amazingism rather than the word autism, it wouldn't change anything or make anything for him better. I wish that we were able to have his input into whether he wanted to be diagnosed or crack on without as some people do get choice. He was diagnosed at two years old after being on a waiting list for about ten months and diagnosis was required at that stage to access specialist slt and sensory ot as it was still diagnosis based not needs based.

I think the difference with conditions like diabetes is that there are medical interventions/ medication that can help and by giving the wrong medication or not giving medication there can be serious consequences, so correctly diagnosing is paramount. With autism while there are interventions that can help such as ot/slt etc they're based on needs and presentation and in theory the diagnosis isn't really necessary, you don't need to know why. Whereas with diabetes you need to know someone's blood sugar is high and that is why they may act drunk or their blood sugar is low snd maybe flaking put. Sugar levels can be measured and monitored too. So I don't think the comparrison earlier in the thread is appropriate.

I agree OP. It was the first thing one family member said to me when my son was diagnosed. That I'd "labelled" him. It wasn't said with malice but they really didn't understand the importance of the diagnosis for his education and for me to be able to learn to manage this new normal. It's bloody irritating.

Some people seek a diagnosis precisely because they want a label.

It's not a "one size fits all" situation where everything is either invariably a positive, or a negative.

I am autistic and have ADHD. Diagnosed with both at age 50.

I always knew, but I didn't know at the same time.

This diagnosis is not a label. It is so much more than that.

It explains why:

I have felt like an outsider all my life.
Why I have never had friends
Why I cannot tolerate loud noises in confined spaces.
Why I hyperfocus on things
Why my children are all neurodivergent (genetic dominance).
Why I see, hear and feel things differently.
Why people think I am quirky.
Why mind whirls at mach speeds
Why I melt down in a puddle of self recrimination, doubt and social anxiety on a regular basis. Leaving me incapacitated and unable to even make a telephone call.

This diagnosis is helping me to navigate all the things I attributed to being a shit person. It is NOT a label. Calling my lifelong struggle a label is reductive and insulting.

I am now focusing on:
Nurturing small groups of friends and acquaintances
Modifying my immediate environment to reduce meltdown type responses.
Forgiving myself for all of my failures, as I now know they weren't my fault.
Resting, safe in the knowledge that I could never have been less different. There is no scenario where I was going to become "normal" because I am normal - just in a different way.

This diagnosis has given me a sense of safety. It has been a literal life saver.

Label. Pffft. My arse.

Never heard anybody labeled with back pain, or with a migraine or with diabetes, or poor eyesight.

Label seems to be applied almost singularly to anything related to neurodivergence and not in a good way. Believe me, there is a difference.

It's used in a reductive way that implies self gratification in the pursuit of a diagnosis.

No it’s not… But having recently worked with two rather difficult people who used their diagnoses to control the narrative in the office, it began to feel that way. I am saying this as a mother of a neurodivergent young woman who fought to get a diagnosis and help for her so that she was understood her deficits and could work on that, and was empowered and as functional as possible. She still has deficits but works around them and is strong and resilient - not controlling and bullying with it all.

Label seems to be applied almost singularly to anything related to neurodivergence and not in a good way. Believe me, there is a difference

I disagree that it's almost unique to neurodivergence, but I agree with you that labels are often a negative.

"Wheelchair user" - a label that focuses on a functional item and diminishes the person

"Schizophrenic" - again, a label the focuses on the condition and not the person

"Manic Depressive" - same as above

Even more outdated terms like "lunatic", "idiot", and so on, all still labels, and then you have terms that are still in common use even if they're not particularly well thought of. "Disabled". It's not often you'll hear someone spoken of as "a disabled", but it does still happen.

@Mebebecat It doesn't get you special help at school - that is always needs not diagnosis based.

😂😂😂

It is regularly said, both in RL and online.

It's the way it's said

"It's just a label"

It's used in a dismissive manner

Not sure what point you are trying to make re neurodiversity and neurodivergence.

Terms such as “neurodiverse” and “neurodivergent” were introduced in the 1990s by autistic sociologist Judy Singer. A “neurodivergent” person refers to a person on the autism spectrum or, more generally, to someone whose brain processes information in a way that is not typical of most individuals.

Although “neurodiversity” is usually used to describe a group of neurodivergent individuals, it also refers to all because everyone has a unique way of processing information

This is so powerful, thanks for sharing.

It's hopefully way more than a label, and will lead to support and accommodation.

But speaking as someone who were diagnosed as a child(called high functioning/now low support needs), I've very much felt labelled and I'm so sick and tired how it seems like only people who've had a positive experience with diagnosis are allowed to share their experience...

I think we need to be generous and open to parents and carers who are clearly worried about their kids' futures and trying to make the right decisions in therapeutic and educational settings. When someone says "I don't want my son to be labelled", what I understand that to mean is: "I'm anxious about his future being difficult, and that people will discriminate against him because of his diagnosis." I don't think that deserves the blunt abrogation that a lot of posters here seem to think it does. It's very hard as a parent working through the process and trying to decide what is best for the future. Policing language all the time does not lead to open dialogue and understanding, but rather, fear and shame.