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

Agreed. I also had to talk to my client (I'm freelance) about some sweeping statements she was making about 'everyone being neurodivergent in some way' / 'we are all on the spectrum' this week. Not ideal.

@perzival I agree it is a very emotive subject and difficult really to discuss fully on such a forum, with so many different lived experiences and resulting view points. But I also think its great to be talking about and thinking about this views and perceptions more and at least this thread is opening up those conversations.

@Poppet77 I agree better mental health support especially for those who would have been dx with aspergers would make a huge difference, actually better mh support across the board would regardless.

Sorry, I hope I didn't make you feel defensive, I was just trying to engage in the debate and I can see where I probably took offence where it wasn't given.

I think this whole subject is difficult and it is hard to discuss without making people uncomfortable due to the number of differing views.

@perzival I think to say it is the brain working differently does not negate that it is a disability. Autisic brain definitely function differently. Maybe me using the word 'just' was not appropriate as it may have seemed like I didn't think this was anything major, which is not a reflection of what I actually meant. Apologies for any careless wording on my part.

And I totally agree that mental health is not the same as autism or adhd but coping with this disability often leads to poor mental health. I think if autistic/ADHD individuals were supported fully to cope with their disabilities then their mental health would improve a lot. I also see no stigma with anyone with a mental health condition.

In previous years many of these children would have been in specialist provision which has been decimated.

Also, many of them simply would not have been 'counted' - I suppose the stats for autistic kids in primary school in the 80s is very low, funny how now we have so many late diagnoses taking place. All of these people, myself included, were just not part of the stats.

@Poppet77 while I'm thinking about it in regards to mh your post proves my point about placing my needs as part of the autism dx rather than having them separate especially considering you add the "Go hand in hand" to support this. Also you say "just differences in brain working" this isn't the case. Autism is a disability and this goes to my other point of those with lesser needs who wouldn't have previously had the autism dx lessening it's severity.

Quite possibly. But people are missing the point of why I posted. I am trying to explain why some
people might think everyone is just after a ‘label’ for children. I don’t say I believe it or think the same.

But an obvious rise in SEN children might be viewed this way by others. Perhaps I took the thread too literally. Apologies.

Don’t you mean that ten years earlier there would have been one or two who were diagnosed? Just like now there will be around 10/11% of children who are left handed compared to it appearing to be around 3% a hundred years ago (even though ancient history shows it has always been around 10/11%).

I didn’t say it was every other child, I said that to many it ‘seems’ like it is.

But as an ex-secondary school teacher, the numbers are rising. In some of my classes I had 4, even 5 SEN kids. 10 years earlier there would have been 1 maybe 2 at most.

Agree, which is the reason why the NIMH declared 2013 they were not going to fund any more research on the Diagnostic & Statistical Manual (DSM) as they felt it was no more than it was “a dictionary of labels” and that people with mental health issues deserved better.

I understand people wanting a diagnosis as that opens doors to options not otherwise available, but arguing whether it is or is not a label and getting upset with someone who disagrees on this point isn’t useful use of energy. IMHO.

We’d be better off putting our energy into interventions that can help people with these challenges.

@Poppet77 I wasn't saying that autism = naughty. What I was saying is that people perceive is that children who misbehave usually have parents with their excuse at the ready "adhd/ autism" whether they do or do not this is what is talked about. Hence the labelling. I think the lack of sen support in mainstream schools feeds into this too.

The mental health issue, I think is very personal and likely something we'll end up disagreeing on. While I understand that autism can contribute to mh issues, autism itself isn't a mh need. Fir those with autism without mh needs the implication of mh isn't desirable and hence a 'label'.

The expanding of the dx is troublesome and I do hope the use of profound autism which is being used more and more will help offset some of the damage.

@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.

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.

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.

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.

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.

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

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.

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'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.

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

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.

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.

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.