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

I grabbed the 'label' with both hands as a late diagnosed 40+ year old. It saved me. The trauma of growing up undiagnosed is not to be underestimated.

I'm autistic (apparently, thats a real rabbit hole) and I think it's a label. It's a label, because it's a not particularly helpful statement, it's not a description. I like the concept of neurodiversity, that yes lots of people sit somewhere on a spectrum, not a line but a vast network. If you have family members who are autistic it's quite likely you also have family members with ADHD, Dyslexia etc, there are huge overlaps between traits and significant co-occurance at diagnostic and not quite diagnostic level. Often people have one diagnosis as a best fit or the one they managed to be diagnosed with first when actually the picture is way more complex. The whole system, particularly among adults, is that you have to diagnose yourself first as you need to ask the GP for referral for a particular assessment. There is no option for a holistic assessment to actually come up with a real clear picture of an individual and their needs. So yes, I think it's a label. Sometimes useful yes, but still a label.

The 'label' way of thinking is very prevalent. The label people can think what they want, and consider their way of thinking right.. however I can only speak for how much a diagnosis has helped my 18 year old DD and therefore me as a parent.

4 years of EBSA, self harm, 3 overdoses and 2 other suicide attempts (plus less seriously but still very hard on everyone - struggling to hold down long term friendships, stimming, very black and white thinking, feeling awful about herself and not knowing why she couldn't cope with things that friends did and can. And why? There didn't seem to be any obvious reason why all of these things were happening. She is intelligent, charismatic and academic by nature.

Getting DD an ASD diagnosis (now 18) 3 years ago was one of the most useful things ever for her.

She wasn't over the moon to hear it at first, however over the last 2 years she has started to accept and understand herself in a way that she never would have otherwise. I also now have a much better understanding of her, why she struggles with certain things and I can support her in a way that is meaningful now whereas before I was at a loss.

The benefit I am seeing now is that now she has decided education isn't for her and she is in the work place, the world of work (and otherwise) is finally starting to understand neurodivergence in people. Some of the jobs we were looking at yesterday said 'if you have a diagnosis that means you are neurodivergent then we will accept your application. And you will go straight through to the next round'

Of course you could argue that in some instances this is a bit of a box ticking exercise - but as a parent who had done nothing but worry and feel like my DD has been at a disadvantage for the last 4 years, I'll take anything that makes it a bit easier for her and people like her.

Totally agree, it makes me so mad. I remember just after my dc's diagnosis (which did not come as a shock to anyone) the psychologist asked me how I felt about them now having a label. There is no other medical condition (call it what you want, but for my dc it's very much a debilitating medical condition) that is described as a label. Why is autism?

Absolutely agree, it’s maddening. My dd was flagged as possibly autistic, when I told my brother him and his wife jumped on me for labling her. I was so angry. I know families who fight so hard for a diagnosis and know there is no way the school senco would flag her if they didn’t believe she needed assessing.

Being given a diagnosis is no different to being diagnosed with any illness, if you have diabetes you need to know so you can treat it, it’s absolutely the same with SEN.

That's food for thought.
I have posted above that I don't consider labels to be a negative thing. Would have been grateful for one for my grown child who struggles and even one for myself.

But you are right- the term label is only used for certain diagnoses and why is that 🧐? It's not something I've considered before.

Leafcutterantsarecool · Today 22:21

I wonder if all the people claiming label is exactly the same as diagnosis refer to someone being labelled with diabetes? Or vision impairment? Of course not. It seems to only be used for neurodivergence and other diagnoses that people like to belittle and talk about not existing in their day.

The children in ds’ school thst have diabetes or allergies are most definitely labelled- the whole school knows who they are, not in a bad way, they’re looked out for. I’m sure they don’t love it but it is how it is and it gives them an added layer of safe. Db is autistic- labelled it in the locality and people know to give him space. People have an always will be labelled post diagnosis, I think people overthink it because they’re worried it’ll be a negative thing for them/ their relative

I wasn't going to bother getting ds 2 diagnosed but his caseworker said it would help him get a special school placement so I got him diagnosed (he is obviously autistic btw which is why I didn't think I "needed" a bit of paper) he was supposed to start year 7 last week he still has no school place ffs

I agree OP. I see it on here all the time. Mumsnet had, possibly still has, an autism troll that says it a lot as well to be offensive.

Informed and decent people learn, know and accept it is a diagnosis.

I wonder if all the people claiming label is exactly the same as diagnosis refer to someone being labelled with diabetes? Or vision impairment? Of course not. It seems to only be used for neurodivergence and other diagnoses that people like to belittle and talk about not existing in their day.

Labels are for objects (jars, suitcases etc), not people.

This

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

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.

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

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.

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

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.

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

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

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 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.

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 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?