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.

This. Exactly this. Amazing post

Mental illness and neurodevelopmental conditions are two different things, and I can't imagine autistic people being that happy to be described as having a "neuro disability".

In terms of people rejecting diagnoses of ASD or mental health conditions....it's a lot more complex than being just about prejudice (I assume you're talking about stigma?). Things like diabetes and other physical health issues are often straightforward to diagnose, there is a clear treatment pathway and there is a clear biological mechanism for why they have happened. Physical health conditions generally don't tend to impact people's personality, behaviour, sense of identity etc (of course there are exceptions to this).

With mental health conditions and neurodiversity, it often feels like the condition impacts the very core of a person - their beliefs, preferences, values, who they are. You can understand why there are a lot of complex feelings tied up in diagnosing autistic people based on, essentially, who they are as a person.
Also, in terms of mental health conditions such as psychosis or bipolar - part of the cycle of relapse and illness is loss of insight, the person doesn't agree they are unwell when everyone around them thinks they are.

Thank you so much for this post. Specifically, your last point described me to a tee.

People who moan about those seeking ‘a label’ in disparaging tones almost always believe deep down that autism isn’t real
This exactly. They don’t say autism is a label. They say it’s “just” a label. No it’s not just a label - it’s a real condition. The same people are also likely to say it’s not worth diagnosing autism because there’s no treatment.

Firstly, a diagnosis of autism is your ticket to access support at school and university.

Secondly, a diagnosis of autism is a ticket to access workplace adjustments that allow you to work, and it also protects you in case of discrimination. The latter is particularly important because employers still frequently discriminate.

Thirdly, knowing you have autism allows you to understand yourself better. You have no idea what a relief it is to spend your whole life thinking you’re just a shit person and then find out actually you have autism and it’s not your fault. You can stop trying to force yourself to meet the threshold of “normal” and feeling bad when you don’t.

Fourthly, letting people know you have autism makes them more understanding. If you say you have autism they generally treat you nicer and don’t judge as much. People always think I’m rude and don’t want to interact with them, until I tell them I have autism and I can’t interact very well.

"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
They did have it in their day. They just failed to diagnose it and failed to support the people who had it. Hence the current stampede of diagnosis for people who weren’t diagnosed in childhood.

Meh, it's quite a useful shortcut as it tells you immediately that person won't get it and probably won't be much help!

My views on autism have changed as my autistic child has grown up. I probably would have been offended by the use of label at one point, but depending on the point I am trying to get across I may use the term label. I wouldn’t say it is interchangeable with diagnosis but it has a similar meaning.

I think there is a difference between a diagnosis of autism
and one of, say, diabetes in that an autism diagnosis is much more subjective. With diabetes there are scientific tests which churn out numbers, and if they are over a certain threshold someone is diabetic. With autism, okay things like an ADOS assessment will churn out numbers, but someone is awarding the points subjectively, plus regardless of the results of the ADOS it’s a group of people, if they are working to NICE guidelines that agree on whether a diagnosis of autism is given.

I used to think people were either clearly autistic or clearly not, but that is obviously too simplistic. If autistic people have a range of strengths and needs in various different areas, like everyone, then obviously there will be individuals that have profiles where their particular strengths and needs put them on the boundary between what would be considered to cause significant impairment in their functioning and what wouldn’t.

I think diagnosis is helpful, for many reasons (to those that say it doesn’t make any difference, it very much does make jumping through the hoops easier, even if it shouldn’t), but for some people around that boundary it does seem more like a label, as there will be little difference in severity between those that do get a diagnosis and those that don’t, possibly just slight differences in particular individual areas of strength.

I absolutely wholeheartedly agree, OP. My exDbestfriend at the time of my diagnosis kept on asking me why I needed a label. I kept telling her it was a diagnosis and I needed it to undergo myself better and that I found the term 'label' offensive but she carried on saying label and I had to keep saying I didn't like it. Getting an autism diagnosis is huge and people telling you it's a label is an absolute put down and the same as telling you that the diagnosis is irrelevant. In my case exDbestfriend was a narcissist and couldn't stand anything taking the attention of her, so that just added to her insistence of calling it a label .

I don’t quite see what point you are making. I didn’t say that mental health disorders and NDD are the same thing. I am simply saying that both are subject to the same discourse around labelling.
I am quite comfortable with the notion that I have a diagnosis of neuro developmental disorder. It’s what autism is currently classified as. It’s a fact, not an opinion. If you think this classification needs changing, that’s a different matter. I personally don’t consider my condition being disabling enough but my cousin with autism does consider himself to be disabled and is quite comfortable in using the term neuro disability. In fact he would say that the term neurodiversity was hijacked by neurotypical population. “We are all on a spectrum” and so on…
There are many mental health disorders that don’t generally feature lack of insight. Such as depression. People still don’t want to be labelled as having it. There are also many physical conditions for which there is no treatment and which are tricky to diagnose. People still, on a whole, want a diagnosis.
The feeling that you have about autism reflecting who people are as a person is just that, a feeling. My beliefs and values are impacted by my upbringing, education and environment I live in. Just as they are for a neurotypical person. Difficulties with communication and sensory processing are not my personality traits or my values.

@WhiskeyOatcake you seem to be saying it is ok to use the term label because somebody might be borderline autistic. You can't be borderline autistic, like you can be borderline diabetic, because autism is something you have or don't have - more like being pregnant. You can't be borderline pregnant.

Some of us autiistics are better at appearing to fit into the world than others so we might appear borderline but what is going inside is exactly the same as those appear more extreme.

I don't know what DH (almost certainly autistic) thinks about the term "label" (I'll ask him later) but he has a fine collection of t-shirts that say things like I Find People Confusing. And You Read My Tshirt, That's Enough Social Interaction For One Day.

I guess he's labelling himself in advance, huh.

Completely agree with this. I didn't need a diagnosis to know that my child had communication delays. However, I will caveat by saying I know that's not always the case. For some families, the diagnosis is definitely necessary as that's when they start to learn more about what it can mean for their child. So I'd definitely say people should seek a diagnosis if they need one and if it will make their/their child's life better in some way.

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.

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.

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

I really agree with this.

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.

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.

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

@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.

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).

@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.

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.

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