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.

@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.

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.

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.

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%).

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.

@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.

In previous years many of these children would have been in specialist provision which has been decimated. My friends son is non verbal and she is fighting tooth and nail to get him into an appropriate setting.

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.

@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.

@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 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.

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.

I wonder how did they feel about being talked to about those statements being not ideal?

Sure if you ignore the fact that using the term is glaringly ableist.

Do you have any experience of a diagnosis or living with autism?

Edited to add

Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability.

My DD is ND. I am glad of her label. It means the school need to pay attention and work with her.

A label isn't negative. It's an explanation.

I know several people who suspect they themselves are autistic or one of their children but each and every one will say something like - yeah, but I am not going for a diagnosis. I don't see the point etc ...

Couple of posters here have said similar.

Why would they not seek a diagnosis? I think because of the negative association with such a diagnosis. One of the people I know told me a story very similar to the one @Postapocalypticcowgirl told about the pupil struggling at school end and then tells me they are likely 'on the spectrum ' but they are not seeking a diagnosis. It was said in a way as if it should be obvious to me. I then said I was seeking a diagnosis for ds and was met with a change of subject. Now I know there are long waiting lists but that's not cited as the reason for not seeking diagnosis. It's something else.

To the poster here to said they suspect they are on spectrum but don't see the point of diagnosis I would say - what's the harm? And you will probably learn something about yourself.

I agree op. Nobody says MS is a 'label', or cystic fibrosis, or any physical disability. It's only ever applied to neurodivergence.

If a 'label' gets my daughter and my family the support we all need, and prevents her mental health breakdown as she learns to better accept herself, then I'm very happy to accept the label. She is utterly brilliant, I tell her this every single day, but she finds life so, so difficult.

There are also loads of parents who are struggling to have their concerns heard by schools and medical professionals because their dc (mostly girls) are apparently 'fine at school'. If I had a quid for every time a senco, family worker, health visitor, school nurse, or GP said to me "she's fine at school, have you tried rewards and consequences?" I'd be a very rich woman. When a diagnosis comes for kids who are "fine at school" but fall apart at home, it's literally life changing for entire families. I don't blame the schools, they have 30+ kids in a class, some of whom have very much more obvious difficulties that impact on teaching and other children in the class. But the pervasive default position of "it's probably a parenting problem" means that appropriate support is delayed and delayed, all the time while huge damage is being done. The whole system desperately needs a roots and branch review and change.

Very well put.

Also for me I had thought I was autistic all my life but didn't see the point as I wasn't struggling.

Then once all my support systems were taken away from me, I stopped coping, I was unable to power through any more and I went and got my diagnosis. I'm probably now too burnt out, had too much skills regression and have too low of a tolerance to ever go back to the life I had, I'll always need a higher level of support, and I'm mad that this could have been recognised at a much younger age and I could have had access to support and provisions put in place for me all my life.

Told myself all my life I'm a failure because I just can't get it right, I can't socialise properly, people all seem to think I'm a little bit weird no matter how hard I try to change it. But I'm not a failure, I'm autistic and I don't need to try harder and I shouldn't have been trying harder for decades. And I wish someone had told me before I was a teenager, because being a teenager is hard enough without adding social and communication deficits, fawning, and sensory issues. That was a recipe for poor mental health and suicidal ideation.

If you think you or your kids could be autistic, why go through years of thinking your deficits are character flaws that you can improve if you just try harder?

When I went for my assessment and got my feedback they also touched on cPTSD and said it goes hand in hand with many adult diagnoses because of years and years of unmet and unrecognised needs and the rollercoaster you go on post diagnosis realising all the times you had a need dismissed, or all the times you had a meltdown and were called crazy or dramatic or told to shut up and pull yourself together.

I have a very biased position, but like the PP I've quoted I just can't understand why you wouldn't go through the assessment process to learn more about yourself or your kids and be better equipped for advocating for your needs if you've got a suspicion.

Probably because you can see those things on an MRI scan or an X ray if not with your own eyes. It feels like something that is less open to being a matter of opinion

This is not actually my opinion. I have said upthread that I support people getting diagnoses of neurodevelopmental disorders if that is helpful to them but I think it ought to be acknowledged that there is a pretty obvious reason why physical and mental/ neurodevelopmental disorders are not so easily accepted by people and that is that they cannot see them.

But the visibility or not of a disability has no bearing on the language used to describe a diagnosis, surely? I fully accept that hidden disabilities are just that - hidden, not visible etc and that they are not obvious. But if you have a diagnosis, you still have a diagnosis and not a 'label'. Also, ADHD is very visible on specialist scans conducted during the assessment phase.

There are so many physical disabilities that are diagnosed on the basis of what the patient reports. No one calls those conditions a label.

Well, a few years ago a friend went for an adult diagnosis for ADHD and it really made me think. So much of what she described was me. She sent me copies of the forms she filled in. I even went through it with my husband who nodded away at the questions. I joined online groups, did lots of research and then found myself getting anxious. I felt I was falling down an obsessive rabbit hole. I imagined what it might be like to get to the end of it all and be told I didn't meet the criteria. I'd have wasted everybody's time to be back where I started, only I would officially know what I had always believed - that I just don't cope well in certain situations.
My friend and others with ADHD I knew at the time were all super-bright and talented. I am, frankly, not. On the various forums I was on, people were showing their wonderful artwork they did when hyper focussed, amazing baking, etc. All this added to my feelings that I was an imposter.
So I stopped. All of it. I left the forums, etc, and abandoned thoughts of a diagnosis. A year or so later, I discovered by accident that a diagnosis I already have - dyscalculia- shares many ADHD traits. Could explain the connection I felt.
I have left it at that.

I agree. I assume the people that say it have kids that maybe it’s not that noticeable? My own adult son is severely autistic with severe learning disabilities. The diagnosis is/has been needed to get the support he’s needed over the years at school, then needed to get the benefits he needs as he’ll never work. If you’re lucky enough to think it’s a label then maybe the diagnosis isn’t needed because without a diagnosis, especially through the education years you’ll be left high and dry without any support. It makes me laugh as well because it’s not like it’s tattooed across your forehead. If you don’t want to tell anyone you don’t have to. My daughter has dyslexia. She doesn’t tell people unless they need to know like her driving instructor etc.

This is completely incorrect. Diagnosis has given my child a school place in a specialist class, carers allowance for us so we can pay for the additional therapies/specialist play groups.
Additionally the diagnostic process identified his specific avoidance/seeking patterns so we know better how to work with him.