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

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.

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.

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.

@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 😁).

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.

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.

@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.

@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.

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.

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.

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.

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

I imagine the poster who said you can't prove it meant there is no bio marker or biological test like a blood test or a scan that can definitely give you a yes or no answer (as with many mental illnesses and neurological disorders)

I wanted to say that too about the pregnancy thing. It is a binary state you are or you aren't

There are lots of illnesses which are binary eg epilepsy, pneumonia and lots which depend on where we put a cut off on a spectrum.

ADHD and autism are spectrum disorders. There is nothing inherently wrong or stigmatising about that so are hypertension and diabetes. There is a spectrum of blood pressure and blood sugar values and we put a cut off point on those and say you have a disease if you have values over the cut off point. It is the same for autism and ADHD test scores.

I find this binary 'I am ND you are NT' thing to defy logic. It's just I am on one side of a diagnostic cut off line and you are on the other. Human beings have a spectrum of ways of thinking, emotions and behaviour.

I don't at all deny that having a diagnosis can be helpful to someone in many ways and I encourage people to seek one if they find it helpful but equally it does not sum up or explain everything about a person. Their unique characteristics and life experiences also matter hugely and sometimes it seems these days as though everything needs to be understood by a diagnosis. In mental health and psychology a formulation is often seen as more helpful than a diagnosis and I agree with that point of view.

You cannot prove autism

What bollocks.

Of course you can prove autism. It's called the triad of impairments. Irrespective of your support needs, to be diagnosed as autistic you have to have met the criteria for the triad of impairments.

@fizzymizzy I really do not understand you. Why do you keep saying my son didn’t have the ability to make his own informed decisions. Firstly he wasn’t 13!!! Why do you keep saying that. He was older and he discussed it with us, his parents and made his own informed decision. You are not able to judge on his decision making ability. Why do you not see that?

I am nodding along in agreement with all this. Thank you for articulating so well. I'm in a similar position and have often thought how the world has changed but as a species, we struggle to keep up.

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.

as part of human nature, we like to organise and put things in categories they can easily understand and deal with. Sadly still, many people without neurodivergence in their lives do not learn how it shows up so very differently. If a ‘label’ of ADHD/autism is going to be stamped on someone, which will happen in some cases, then I think it is damaging to share widely where the person’s diagnosis is not outwardly obvious (e.g due to masking, internalising and cognitively coping). A diagnosis is full of complex interacting elements that is part of what makes someone who they are explains why they may struggle with some things (but excel in other areas). It help people to develop self acceptance, self understanding and to seeking support when needed. To others it may be a label to add to someone so they can put them in a specific category of people that have the same ‘label’ and associate all sorts of limits and preconceptions as a result.

Or, on the other hand, sharing a diagnosis can lead to denial/rejection by others due to the individual not fitting the predetermined label of the category this person has created the label for.

DD has an incredibly well developed sense of smell. She's a bit prone to exclaim, this (random thing) smells like granny/the green trousers/the old car. I honestly think she can detect some kind of compounds in smells the rest of us can't, like a sniffer dog.

She can also say what kind of film music comes from, even when she hasn't heard it before or seen the film e.g. Thus Spake Zarathustra. "Space"!

She was explaining the jokes on Private Eye covers to me by age 8 ("Boris brings his own boos. Oh like booze. And people boo him. Booo. But why do people bring booze? Where to?")

She doesn't fit in the box for school academics though and if she had a label it'd say Handle With Care.

As a teacher, I find the idea of not wanting a label for your child very difficult. There's a few children I've taught recently who clearly have some kind of need (I accept I'm not qualified to diagnose, but I'm talking about older teenagers who struggle with day to day activities that their peers can manage easily). The parents don't want a label, so it's hard to put appropriate support in place. However, if/when something goes wrong, it's all our fault.

In at least one case, I think the young person was actually at risk- for example he finds the end of the school day very overwhelming, and this sometimes leads to him getting on the wrong bus (public bus so his bus pass still works and no-one is checking). He then obviously ended up in completely the wrong town/village, which is scary/distressing for him! He also really struggled with time, e.g. cannot remember deadlines/appointments and doesn't seem to have much idea of how long a task will take him. He's in our sixth form now, and really struggling with the increased independence and expectation of independent learning. I worry about his ability to hold down a job in the future, or live independently at university.

His parents, however, are against getting him a diagnosis because it's a "label" so he will get no support with his transition to the next step and there is not much we can do. He is academically able, but really struggling with the requirement to produce coursework for certain subjects, and again, he's unlikely to achieve his potential. Despite this, historically, they have wanted the school to put support in place- but we can't really provide things like TA support unless parents will allow us to pursue an EHCP, which they wouldn't.

I came across this quote recently which kind of sums up the 'label' thing for me, as someone in my 30s realising that I'm probably autistic and that might be why I constantly feel like I fail at life.

“Why do you need a label? Because there is comfort in knowing you are a normal zebra, not a strange horse. You can’t find community with other zebras if you don’t know where you belong. It is impossible for a zebra to be happy or healthy spending its life feeling like a failed horse."

@Phineyj
Oh yes I completely agree. My DD has definitely been helped by the structures put in place at school. I suppose what I'm trying to say is that there are 2 levels. 1: in the real world we have to live in and cope with, those diagnosed with ADHD can then get help such as medication or support at school. So a 'label' is good for that. But 2. Theres the wider (and obviously impossible) that living in the world necessitates this kind of compliance with things that are actually really unnatural for humans. Without this, people with ADHD would just be super cool people, not labelled people!
Various traits such as very high levels of creativity, energy and empathy, hyper-focus, even odd things like being very aware of physical feelings/instincts are actually skills which are vital to human society. It's just that in this particular human society of the last 100 years or so, and definitely the last 30 years or so, they're skills that also cause problems.

I do understand what you are saying @Namechangeforadhd.

However, being a secondary teacher I know a lot of kids my DD's age and while there are others like her, she's definitely outside the norm. The "label" is helpful so DH and I know we're not pathetic parents/going mad, and in retrospect DH's struggles have made a heck of a lot more sense.

It's very difficult to explain this position without it sounding like I'm denying or minimising neurodiversity. I'm not - my wonderful DD has suffered very badly - but I think the issue comes because when a Dr diagnoses an illness, there are clearer diagnostic tools and if the illness is present, it is something which either is or isn't curable.
ADHD is not an illness, but to some extent in reality a 'label' (or just 'name' if that's less offensive to people) for feelings, reactions, behaviours which in my view are perfectly understandable in the modern world, but make fitting into and coping with the modern world difficult.
Feeling overwhelmed by fundamentally very unnatural stimuli, being unable to focus on things which until only a few thousand years ago didn't matter at all, having very intense emotions in the face of having to deal with so many other humans, are in my view perfectly understandable reactions. As humans we haven't genetically adapted to this very new world. I'm not sure we can. I'm surprised more people don't show the traits which we currently call 'ADHD' frankly. Mind you I'm probably ND myself so I guess I would think it's 'normal' and it's the rest of the world that's missing something 😂

Being smart doesn't make a 13 year old able to make adult decisions though, and the choice of pursuing an assessment for a lifelong condition is an adult decision. I'm not saying he isn't clever, it's not about that.