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.

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.

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 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

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

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.

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.

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?

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.

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.

Interesting that some people don't view label as a negative, and refreshing!

I've only heard it used in a "why are you labelling him" or "I don't want them to have a label" way, so happy to hear a different perspective.

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.

Diagnosis saved my family too. Glad you were able to get a diagnosis!

The whole point is that a diagnosis is
helpful and wanted by some. Not others. My ND child did not want a diagnosis. To them it was a label of being different. Yes they are still different
but to them it wasn’t ratified so was just how they were. It didn’t matter because all support given by school and doctors ( including meds) was needs based not diagnosis based.

I guess we all see and hear it in different ways and contexts. I'm glad it's a positive thing for some! I'll be honest and say I have only ever heard it said in a negative way from mainly parents'I don't want x y to be labelled' . It's good to hear it can be used in a positive way too

Being diagnosed helps to customise life for DS1 and to understand what he needs and makes conversation with school easier. He had a rough patch at 7 and was diagnosed at 9. Knowing relatively early gives us better odds of him not having a huge crisis as he goes through life.

DS2 is diagnosed with asthma. This helps him with prescriptions that protect his health and targeted check-ups.

While one is about mental welfare and the other is about physical welfare, both diagnoses are about protecting their health.

"Label" is often used to insinuate that the condition is not genuine and excuses are being made.
If DS2 was being "labelled" with asthma, it insinuates that it's not real and might be used as an excuse to not join in with PE rather than recognising it as a genuinely debilitating and dangerous condition. Autism if managed poorly can also be debilitaing, and potentially dangerous if mental wellbeing is really suffering.

Generally children, ND ones even more so, don't have the capacity to make such vital decisions.

The problem is not the word 'label' there though. The problem is ignorant parents with no understanding of their child's needs. I feel quite strongly if you suspect your child has any health condition or NDity that you should not have the choice but to have them assessed. If a parent said 'no thank you' to an xray for a potential broken leg, or for diabetes checks the SS would be involved. It should not be any different for autism etc

I think they do to an extent. My 13 year old is being assessed for ADHD, having already been diagnosed with other conditions. We wouldn't be going ahead if he didn't want to do it, he could simply not co-operate. I'm sure he hasn't had deep thoughts about the nature of words and labels, but he has enough capacity to determine he wants to know more and wants the assessment.

@deepstarfish

but he has enough capacity to determine he wants to know more and wants the assessment.

He cannot possibly have the understanding of the longer term implications

But who would do the feeling strongly that over rides the parents? Schools aren't interested unless the child's needs are unmet to the point they are causing fairly significant behavioural issues, no-one sees the same GP twice. Who would identify these kids in this scenario?

I’ve heard this time and time again. You aren’t alone and it also makes my blood boil.

People who moan about those seeking ‘a label’ in disparaging tones almost always believe deep down that autism isn’t real, is deserving of pity, is an insult etc etc.

I have this battle with my ex who is thoroughly opposed to kids/himself being ‘labelled’. It’s absolutely maddening. He’s robbing himself and kids of the means of understanding.

What longer term implications exactly??

DD school would not listen to us when we highlighted self harm, suicidal ideation, hyper emotional etc Apparently, all of this was "normal behaviour" going from primary to secondary school. They had zero idea about masking and the energy this takes for a solid 6hrs.
Her autism diagnosis led to us starting an open dialogue and needs based support she needed at school. DD feels extremely embarrassed whether it's a label or a diagnosis. She was called a spastic recently by a peer. It's rubbish for her and I just want to take her pain away.

@deepstarfish

But who would do the feeling strongly that over rides the parents? Schools aren't interested unless the child's needs are unmet to the point they are causing fairly significant behavioural issues, no-one sees the same GP twice. Who would identify these kids in this scenario?

I have no idea. I'm allowed to believe in assessment being vital where anything is suspected though. I don't need to have all the answers to feel that way.

@deepstarfish

What longer term implications exactly??

I have no idea, the point I was making is that your son has decided based on how that will affect him now, as a 13 year old. About how he would feel.