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.

Well where are you hearing that? Can't say I've heard it myself tbh

It came up in two totally unrelated conversations yesterday. One from a work colleague talking about a friend going for a diagnosis, and then my hairdresser talking about a family member.

I hear it regularly and read about it even more often here.

I agree to an extent, however a lot of people assume that autism presents the same way in all people, which of course it does not. Every single person who exists has needs, and I think it is much more helpful for people to take the time to understand their own and other peoples individual needs and differences, rather than assume they understand someone due to their diagnosis

I think the people who think autism presents in one way might be the same people who think it's a label.

I agree OP, I've heard people say they don't want their child labelled. Naughty is a label, stupid is a label. autism is a diagnosis.

Absolutely agree. I find it bizarre that parents would rather their children are given often derogatory labels (weird, quirky, odd, naughty, defiant, rude) rather than a diagnosis.

I saw it repeatedly on a thread on here earlier today.

I agree OP.

I had my health visitor say 'it's just a label' 🙃

The sad thing is that a child with an autism diagnosis is still labelled as stupid/ naughty/ rude...
People do not understand autism traits unless they are affected in some ways, either having a diagnosis themselves or a close family relation incl. their DC.

It was literally posted on a thread here earlier this evening and various other versions of it by subsequent posters.

Can we also include:

• it's possible to be neurodivergent and happy and healthy. It's a developmental condition, not a sickness

• 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

• we are not "all a little bit on the spectrum". No. Just fucking no. This goes back to the idea of normalcy. It is normal to not like loud noises or to enjoy routine or to hate socialising or whatever other BS random traits you attribute to neurodivergence. It does not make you neurodivergent, it makes you human. I have a bit of an achy lower back, my boobs are slightly tender and I'm bloated. These are common traits of pregnancy but I'm not pregnant, I wouldn't be able to claim to be a little bit pregnant would I, simply because I share some traits of pregnancy? No, I would because to be classified as pregnant you need to meet a certain diagnostic threshold, much like you do with neurodivergence

• on the subject of traits, no two people are the same and that is true of neurodivergent people too. We may share some common factors because we've all had to meet the diagnostic threshold in order to actually be diagnosed but how those factors present and our own personal profile will be wildly varied

• we're not doing it for the benefits of the carers allowance

• neurodivergence has been around as long as humans have, they just didn't know what it was until it was named. "We didn't have any of that in my day!", I can guarantee they did considering that one of the largest groups currently being diagnosed is middle aged women who were in their childhood super-sensible expected to achieve highly but never quite delivered types

I don't know how or who you think a diagnosis of autism helps. And I'm certainly not ignorant on this issue.
A diagnosis of autism isn't standard. Groups of professionals can and do disagree all the time.
It doesn't get you special help at school - that is always needs not diagnosis based.
Doesn't get extra funding or rights.
Doesn't inform anyone what the actual issues are, doesn't inform strategies or reflect needs.
Of itself it's about as useful as getting a diagnosis stating 'there is something wrong with this child's eyes' You need to drill down into the specific issues and these will be so dissimilar from person to person as to have nothing in common.

I guess? Actually I'm not really sure - I've always taken the tack that labels are good, having a label is useful with additional help at school and helpful in getting others to take your difficulties seriously. I'm saying this as a parent to an undiagnosed adult and probably ND myself.
I'm not quite understanding why people are associating the term label with negative character traits (or things they perceive as negative). To me label and diagnosis are one and the same?

We've found help to be very definitely based on diagnosis and not needs. In fact we've been filling in forms this week that asks for consultants letters and evidence of diagnosis in order to recieve help.

I come across it all the time in the context of mental illness or neuro disability diagnosis. Yes, it sits uncomfortably with me because nobody ever rejected a diabetes diagnosis because they “didn’t want a label”. It just shows that prejudice is still rife. I hate it.

But label is pretty much a synonym for diagnosis. Diagnosis is medical labelling.

Drs diagnose illnesses so they can group together similar things for the purpose of being able to study them and make statements about prognosis and treatments

I don't see how they are massively different concepts?

I'm quite happy for it to be one of my 'labels'

Ironic really, given the difficulty that a lot of us have with labels... scratchy bastard things

It's how people use the word label.

People only talk about it being a label in a negative context.

It's really hurtful to be autistic and someone say something like "my parents didn't seek a diagnosis for me because they didn't want me to have a label", when as a child you didn't have a diagnosis but you had many labels some of which were slurs because of an absence of diagnosis.

i think it depends
ive known children be denied DLA until they got a diagnosis
there are 3 primary schools in my area with special asd units attached ….you need a formal diagnosis to get a place at these

Completely unreasonable!! Of course it's a label. It doesn't change who the person is so if you don't want that label, don't go for formal diagnosis.

For me, with a child (now adult) who did not develop along normal lines, getting an ADOS done alongside a cognitive assessment gave a label of autism with low IQ. That was massively helpful in accessing help at school and also support in his adult life.

It was key in securing a guardianship order for him. To my mind label and formal diagnosis are one and the same.

I have other kids (adults) who i strongly suspect would also receive a label of autism if formally assessed. But they don't appear to have cognitive difficulties so were never flagged up as needing assessed.

I'm sure they themselves suspect they have 'autistic traits' but they manage perfectly well in life without the support my diagnosed DS needs.

He is labelled autistic and it's opened doors for him

Label = formal diagnosis to my mind.

If enough people think it is a label than that perception makes reality. Not the whole reality of course, but certainly part of it.

Label or diagnosis or not - I don't spend time arguing terms with people who can't be arsed. The fact is that some 'labels' are important, some aren't necessary. An ASD diagnosis/'label' is important and incredibly helpful to me and my family. Anything else any one says is irrelevant to us.

Unfortunately you can’t change some people’s ignorance, no matter how loudly you shout.

This