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

One of my dds is on the spectrum. I secured a diagnosis for her while in primary school. She's now in her 20s with her own child and often tells me off for having her labelled. I explain I had no choice as her unsupportive scholl had her labelled as a naughty child. I wanted her to have to correct support

I managed someone who was autistic. Knowing their diagnosis and what their strengths and challenges were was so helpful. But what was even more helpful was when someone would complain to me about the individual's abruptness (as they saw it) I could (with their blessing) explain a few things about autism.

Of course getting a diagnosis with no follow on work with psychologists, occupational therapists etc. is not helpful. A diagnosis helps those professionals frame therapies, choose the right methods.
I know adults seeking diagnoses but they are actively planning to use that assessment for further management by professionals and their own self management and education.

@Areolaborealis surely the school want it as it is easier for them, so that they can support your ds as effectively as possible? The more information about individual students in school, the better teachers can understand and make accommodations (even subtle ones) in the classroom that can meet the student's need and enable them to make the best possible progress, and can support the student's wellbeing as well as possible.

I think it depends on level of need whether a diagnosis is seen as a helpful tool or a harmful label.

My late Asperger's diagnosis at 30 was, in my experience, was a totally pointless 'labelling' exercise. Being high functioning there is no 'support'. Its literally "you have a brain problem but there's nothing we can do about it except give it this label".

Going by my own experience, I have resisted getting DC assessed for what is probably high-functioning or Level 1 Autism or whatever its called now. The 'label' seems to be something school want in order to make things easier for them.

Exactly this.

I had to take my mum, the aq50 and a 5 page essay documenting in great detail the impacts of the struggles to my daily life before I could even get on the waiting list to basically redo tbe aq50, personality disorder questionnaires, risk assessments, and then the family history interview before I could get put on to the ADOS assessment.

You don't just go to your GP and say put me on the list, it's gruelling, time consuming and at times a bit traumatic. Nobody seeks a diagnosis lightly.

You can't just get put on the list because you fancy it. I had to prove it was impacting my life.

I agree, couldn't think of any myself that are not brain related (as epilepsy is).

My Raynaurds was diagnosed by me reporting my symptoms (I had a blood test to rule out any underlying cause) as was my migraine, vertigo, as was 2 of my hearing problems, etc

I honestly feel if your 'symptoms' aren't affecting you in the slightest then probably you don't have autism but some traits that autistic people have?

I can't understand how, as a pp wrote, someone is autistic but not affected in any way or only in the littlest way possible (Perhaps they're obsessed with lining up cars for example or something they can actually live with as a 'difference'), yet this is supposed to be the same "Autism is Autism" with those who're actually affected by the triad of impairments as well as other sensory difficulties. I'm not even talking about the LD and other co-morbidities that can go with it.

If it doesn't affect you, then you shouldn't meet the diagnostic criteria imo but I'm not an ND assessor so... <shrugs>

Not so many really
Epilepsy
Can't think of many others tbh

Do people have scans for ADHD??
I have never heard of that. None of the many people I know with ADHD diagnoses ever had one.

Whats annoying me is a lot of people who are bulking up the waiting lists are people who are wanting to get tested just ‘so they know’ and not because their ‘symptoms’ are severely impacting their life that they need a diagnosis to get the help and support they need. My son is 5, he’s only able to do half days in primary school because of his additional needs. He’s awaiting both an appointment for a diagnosis of autism and adhd and for speech speech therapy - both of which he has been waiting 2+ years. It’s impacting his every day life, he doesn’t sleep until gone midnight each night, he lashes out and has extreme meltdowns multiple times a day (I cannot figure out why and it breaks my heart as I cannot help him before he has one). As stated, he isn’t able to manage full days in school, he cannot communicate properly. Every aspect of his life is a struggle and also mine as a parent, yet we cannot access the diagnosis and help he needs because people just want a ‘label’. I know someone who claims her daughter is autistic and tells her to ‘flap’ because to everyone she doesn’t appear autistic so she tells her to do that so people know - there’s people like this who want it for the benefit purpose or just to be ‘different’ or as an excuse for their children’s behaviour. I understand wanting to know, but if it doesn’t impact their lives on a day to day basis they should go to the back of the ‘queue’ and people like my son should be priority.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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