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'm sorry I have no idea where i got 13 from

I wasn't judging your son o was trying to point out that 13 year olds cannot make adult decisions. If they could they would be all living alone, like adults.

Moot really given my error.

Apologies

There is no bio marker e.g. specific allele that we have found to say, if you have this gene variant, then you autism. Like all characteristics that are on a spectrum there will be a large number of genes and environmental interactions to cause them (just like for blood pressure, height, etc). But that also means that the cut off is also somewhat arbitrary. So for example, what the numbers are to define high blood pressure or short stature will vary depending on what we consider high blood pressure or short stature. But at least with blood pressure and height, there is one definitive test. Not so with autism, ADHD, dyslexia, etc. Specialists have to use their professsional judgement along with an (ever evolving) set of tests to determine if someone reaches the cut off to be given a diagnosis. Those on the border are more likely to receive false positives and false negatives determined by the subjective cut off that has been determined.

It’s often because people will describe an “autistic child” rather than a “child with autism”. The former says the defining characteristic is having been diagnosed with autism, the latter is that the defining characteristic is that of a child.

On the flip side, so many people who have a family member with autism state that constantly so it gets used as a label.

Autism is a protected characteristic. A diagnosis legally affects the way the person with autism can be treated entirely to their benefit. I have an autistic child and have taught autistic children with and without diagnosis.
I have had to try to deal with several "car crashes" during education of children who's parents refused to get diagnosis then realised they needed one only to also realise they were going to have to wait several years to get the help they finally admitted their children needed - right now - because thats how long the diagnosis would take to get. Even though they had suspected the condition for several years already.

@Jimmyneutronsforehead. Just to clarify that when I mean you cannot ‘prove’ autism, I meant there is nothing concrete that you test for that reads ‘positive for autism’. Yes, for autism there is a battery of tests that have been developed, but they are evolving and require expert interpretation. Quite often experts disagree when an individual meets the criteria for the triad and why the assessments often involve multiple individuals over several days, weeks, etc. It is why some people have been missed from diagnosis as they do not fit the human designed tests. For example, the tests and criteria for autism were designed principally for males. It is only relatively recently that it has been discovered that females represent the triad very differently and autism (and ADHD) looks very different in women.

@Poppet77

Firstly, I disagree with the poster who said being autistic is like being pregnant. There are not different degrees of pregnancy: it’s binary - you either have a fetus growing or you don’t and it can be proven definitively. You cannot prove autism, there is a spectrum (unlike pregnancy), it is subjective on its diagnosis, and it looks totally different in different people.

The triad of impairments are still the triad of impairments for men and for women and exactly like pregnancy it is binary that you either have autism or you do not. It is a spectrum disorder because each autistic individual will be hypo or hyper sensitive to different sensory stimuli and have a varying level of support need from each other.

This is the point I was making that you appear to have missed.

If you have the triad of impairments and this has been the case since childhood and cannot be better explained by another condition then it's not within a spectrum of no, er well maybe, yes a little bit, ooft definitely a lot, and extremely.

It's a yes or no.

There will always be cases when professionals need to challenge whether it can be better explained by another condition or whether a case meets the triad of impairments and it is disabling, but the triad of impairments will still remain the same.

Yes, thank goodness they realised women might present differently however the triad of impairments still covers women it's just that there's a better understanding of how that impacts women, for example women aren't likely to have a collection of hot wheels cars that they line up because they might have more subtle obsessive or restrictive interests like the holy roman empire, or ancient Egypt, or the complete history and workings of the large hadron collider, or animals, or geology or literally anything else because women are not little boys and were raised very differently.

Anyway back to my original point though, being autistic much like being pregnant is binary.

But it just isn't binary.

Apart from in the sense of someone diagnosed you or they didn't.

It's only binary if hypertension or diabetes is also binary. You have those conditions or you do not because your readings crossed the diagnostic threshold but your reading could be nearer or further away from that threshold

Yes the diagnosis is made on the basis of having the triad of impairments but that in itself is a judgement call.

Someone (or a team of people) decided that the degree to which your social interaction, communication and repetitive behaviour differs from that of others crosses a diagnostic threshold. It might do so by a small margin or by a long way.

If that diagnostic threshold moved up or it moved down more or less people would be diagnosed. Same as it would be if the threshold for hypertension moved from 130 to 140.

Wholly unlikely pregnancy which is a genuine binary state.

Not really. "Person with autism" is saying "This is a totally normal person, but with this extra thing that makes them not normal", as though it's a disease (it isn't).

I'm autistic. It is a fundamental part of me, and I wouldn't be "me" without it. That's not to say my life's all sunshine and rainbows thanks to autism (it very definitely isn't, quite the opposite), but autism is a defining characteristic of mine and everybody else who has the condition, including children. It's not the only defining characteristic, but it's a hugely important one.

As to the "label"-ness of it...I've noticed that everybody who says my diagnosis is just a label also says stupid stuff like "everyone's on the spectrum somewhere", which betrays a fundamental lack of understanding of what the autistic spectrum is.

@thepure thank you...exactly this. I didn't have the energy to respond but you said what I wanted to (and probably better than i would as i get a bit rambly 😁).

I don't know enough to say about Type 1 diabetes (although presumably the pancreas stops working gradually, not suddenly? Thinking of a girl I know who was diagnosed around age 8, but was fit and healthy up to that point) but with Type 2, people can be pre diabetic and make dietary changes. My mum did that and is now classed as not diabetic. So I guess it's not as binary as all that.

Yes that's my point diabetes is a spectrum disorder and not a binary. It's diagnosed on the basis of having a certain blood sugar level.

Diabetes isn't a neurodevelopmental disorder. You can be born with diabetes or acquire it.

You can't acquire autism. Its a neurodevelopmental disorder. You're either born with a neurodevelopmental disorder or you are not.

It is a spectrum disorder because if you are autistic you have a spectrum of need. You can't become neurotypical.

It is binary. The diagnostic process is not a series of finger-in-the-air judgement calls; it's a series of clinical diagnostic steps, which are prescribed very specifically by the very specific definition of autism. Nowhere in the diagnostic requirements does it state the extent to which a specific trait must differ from the rest of the population, beyond the fourth requirement (which everybody's ignoring) which is that it must cause the individual significant difficulty (which also has a strict definition in clinical terms).

Yes, it's true that if the definition of autism suddenly changed (as you seem to be suggesting), then the required traits for diagnosis would also change, but that's such a daft self-evident statement that it's not even worth making - if the definition of any condition changed, then it would also change the diagnostic threshold.

HELL YEAH @Harrysutton! I hate the negative connotations of label and the implications behind it that the person it is attached to is going to use it as an excuse.

Being diagnosed ND is a real medical condition that is a significant disability and should be treated so.

If there's a spectrum of severity within having ASD how is it so impossible that there is a continuum extending outside that diagnostic boundary to people who don't have it?

If some people have mild deficits and are diagnosed then how is it impossible that there are also some people whose deficits are there but are so mild as not to meet a diagnostic threshold?

I now get (having had a bit of a Google) that this is a political point and the pregnancy analogy seems very popular. People seem very invested in the identity politics of ASD and the idea of two different types of brain but where is the proof that it's true? There are no scans or blood tests or bio markers to prove it.

I don't think there is any proof at all that there are two different types of brains NT ones and ND ones. We don't entirely know what causes ASD but it's likely to be polygenic and most polygenic conditions are on a spectrum because it depends how much gene contribution you have.

I am sure that has offended lots of people and is just what an NT person would say. I have an ADHD diagnosis FWIW and I also think ADHD is undeniably a spectrum.

@thepure I agree totally with your points, thank you for making them so well.

I've not read the full thread after my first post in it earlier.

I wonder if autism being referred to as a label has come about with the increase in diagnosis and the inclusion of what once was aspergers and a couple of other conditions that were previously a separate dx included as autism.

Autism was once understood to mean people with severe needs now people think of naughty children in school and having them labelled as an excuse to not deal with their naughtiness- I nothing this happens on occasion with some parents discussing their child 'failing' the assessment or having them reassessed and reassessed but I think this is the minority. I'm not belittling any dx or saying this is my view.

I also think self diagnosis has caused some of the negative tropes around autism diagnosis. The differences in presentation of people with the same dx is also contributing. Some people need 24 hour support for everything while others have careers, families, success etc. I think autism has become a severe disability and something people ID into at the same time and post about on tik tok. Think 'differently abled rather than disability' or 'autism is a superpower' then bumping into a young man with two support workers who has high needs- the two don't add up.

Another factor maybe how mental health needs are conflated with autism with people referring to their autism needs which are really mh needs. Someone can have autism without mh and mh needs without autism needs but I think some people find it easier more acceptable to refer to it all as their autism rather than mh.

Just musing on the label point, not my views but I can see where others take these views.

I agree with this too. I actually think that with hopefully more research what is understood to be autism maybe a number of different conditions that can be separated out. I also think genetic testing will play a part too.

I think part of the problem is that it seems every other child has a diagnosis of something nowadays, so people are becoming a bit blasé about it (and, dare I say, fed up of it maybe?)

And I say that as someone with the exact label you are talking about.

Oh god not the "every other child". It's about 5%. 1 or 2 in a typical secondary classroom.

I think the negativity around the word label is some people not understanding nd and/or thinking some parents want an excuse for what those people consider to be bad behaviour.

Everything is a label even down to what hand is most dominant for writing etc. The real negativity is in the mindset of those who don’t understand nd so brush it off as an excuse and those who don’t underhand that perhaps their child doesn’t have adhd or autism and instead needs a different type of parenting or has some other condition.

Given how much disability discrimination is rife I wonder if that is what some people are concerned about ? And it is - even by those who ought to know better.

Eg. I have been discriminated against by a doctor for a pre existing mental health condition. I was denied the treatment I needed.

I also have for some time been considering whether or not I am autistic. I feel that it’s a distinct possibility. However i am not sure if I will ever seek diagnosis as i am terrified of being taken even less seriously because a doctor sees it on my file.

Both adhd and autism ARE spectrum disorders in that each individual will have varying support needs but in order to reach the diagnosis threshold for both you need to be severely clinically impacted on a daily basis. Not every one is on this spectrum. Not everyone is a little bit autistic. Not everyone is a little bit ADHD.

People with ADHD and autism are just human and their behaviours and deficits can be displayed by any one, however a few quirks or deficits does not suddenly mean you are neurodivergent.

Of course there are people who display behaviours that do not meet the diagnostic criteria, because autistics and ADHDers aren't some weird aliens. They simply have displayed these behaviours from early development, meet the triad of impairments and are clinically severely impacted by their impairments on a daily basis.

This is why you either meet the diagnostic threshold or you do not and our functioning, ability to adapt and ability to learn behaviours is categorised by our neurodevelopment.

Also there aren't just 2 brain types. Neurodivergence covers a huge spectrum of disorders some of which are neurodevelopmental and some which are acquired.

Often ASD is not a stand alone event and as with my DS there is a whole load of other stuff that adds to the general disability eg poor executive functioning, poor working memory, poor coordination, low muscle tone, bowel disorder, language impairment etc

My son needs a carer to get to an unfamiliar or sometimes familiar place. He can’t plan a simple day out with non paid carers.

I guess that’s the issue is that when we talk about ASD it’s a wide spectrum and so for my son he needs all that support just to be able to function.

I suspect that I have ASD - ( had a major melt down at school when aged 11 re breaking a rule, have OCD traits, talk at a tangent, have hyper focus, rule following etc) Generally I survive ok but wondering if I ought to get diagnosed as I can’t even understand conversations when 2 or more people are talking around me. When a teenaged I would fall asleep at nightclubs under a pile of coats as the places were too loud. Part of me thinks - what’s the point of a diagnosis. I’m not like my son, can cope and I take the steps I need to to deal with it. I recognise when I’m not able to socialise etc.

@Perzival In my experience autism does not match to 'naughty' behaviour in the classroom. I am a secondary teacher and would not describe the behaviour as any of my students on the autism spectrum as 'naughty'. Some have difficulties in the classroom but they are not 'naughty' kids. Maybe ADHD is more likely to linked to this category, as hyperactivity in the classroom can seem wilfully naughty (but not if you have the inattentive subtype of course). But I find it quite easy to spot the difference.

Interestingly about mental health, a person I know well with an ADHD and autism diagnosis is highly intelligent and so deals with her challenges from this conditions very cognitively and masks (probably would previously defined as Aspergers). To the outside world she does not obviously have either of these conditions due to masking and learned behaviours but suffers from perfectionism and anxiety. So her diagnoses and coping show up in her poor mental health. This is very common. ADHD and autism are not the challenges, just differences in the brain working. The challenge is trying to fit into a world designed for neurotypical individuals. Neurotypical would have similar mental health problems fitting into a world designed by neurodiverse individuals. So neurodiversity and poor mental health outcomes go hand in hand, sadly, especially for those who mask.

I agree with you that the widening diagnoses has made it difficult for people to group someone with huge difficulties in functioning and those who function at a high level, but with the same 'label'. Its back to what I said in a previous post and what has been talked about in a lot of posts: humans like nice neat categories that they can fit things into which follow specific set of rules (particularly autistic people! :-)). The human brain is so complex and it is always going to be super messy trying to fit the way a brain works into a category.