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.

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.

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.

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>

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

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

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.

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.

@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.

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.

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.

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

That's quite an optimistic picture of the level of support available to adults after diagnosis. The reality is that many are just left to get on with it, presumably because its seen as an untreatable problem.

I agree.

There are no commissioned services for adults with autism in my area unless they also have a learning disability. Definitely no psychologists, OT or anything like that. It does mean that getting a diagnosis as an adult in our area (and I think many others) is mainly for your own understanding. You would certainly have to do your own self management and education. There is, as such, perhaps an argument given the state of the waiting list that you could just institute those strategies on the basis of your self diagnosis and that not much will change by that being confirmed by a professional. I rather wish that diagnosis didn't have quite the power that it seems to have.

I'm not suggesting these services are available within the NHS, they should be but there's not even enough for kids right now. There aren't any of these services for adultswhere I am either. But the people I know are pursuing these services privately. The point I'm making is that a diagnosis without follow up isn't likely to do that as much. It does give more self awareness though.

There is, as such, perhaps an argument given the state of the waiting list that you could just institute those strategies on the basis of your self diagnosis and that not much will change by that being confirmed by a professional.
The diagnosis carries legal power. You can’t ask for reasonable adjustments to support a disability you haven’t been diagnosed with. You can’t tick the disabled box on application forms that guarantees you an interview under the Disability Confident scheme. You can’t be counted as being “diverse” by companies or groups that are aiming to increase diversity. You can’t apply for things that are targeted at disabled people.

More importantly, if you don’t have a diagnosis you can’t take legal action when you’re discriminated against because of your disability. It still happens A LOT even nowadays.

I'm not so sure.

The professionals working with my DS were very, very slow to recognise and diagnose his OCD because he aleady had an autism diagnosis.
Whether they called his diagnosis a label or not was pretty much irrelevant - the very fact of it meant they seemed blinded to other problems he had. All repetitive behaviours were attributed to ASD, the motivations behind the behaviours didn't seem to matter. This, even though autistic people are known to have a higher incidence of OCD. They couldn't see it- even when it was suggested by the family time and again.

And it mattered because the treatment or strategies to deal with the conditions differ.

A lot of autistic people feel very let down by CAMHS so I don't think we're alone in this. Being 'labelled' with the ASD diagnosis has a negative effect for treatment by these professionals.

@Fallonslearning "Being 'labelled' with the ASD diagnosis has a negative effect for treatment by these professionals".

Agree. I wish more people understood this.

Yes, I am heartbroken from it @Areolaborealis.

You and the poster you quoted think people get diagnosed for shits and giggles?

I’m one of those and the answer is that I see the state my son is in, how high his needs are and feel that I can manage. What is the point of detracting from people like him and their high needs?

Here’s my situation. I’m left handed, struggle to write in a clear and tidy way, interrupt people’s conversations and finish off their sentences, was chosen last at school for sports, made silly mistakes etc. I dreaded night clubs and busy pubs and felt that I had to ‘play act’ and go along with it. I have disorder and pull out my hair when things are muddled or disorganised. If I have to do something midday I fret before the appointment about being there on time. I speak to fast and often a tangents etc.

If I was to guess I would say I have the dyspraxia overlap with ASD traits. Highly likely the consultant took one look at my dad and determined some ASD there. My son is diagnosed.

If I were 20 it would have helped to have extra time on exams and a laptop plus a bit of extra tuition. As it was my exam was a series of ink splots and scrawls. I should have had distinctions for my law finals exams and as per usual just passed ( which was great in those days - pass rate 68% but still). It serves no purpose now.

This is not what we are saying at all.

We are discussing the fact that there are very few services for adults with autism. Many services are only accessible for people with learning disability. Many people with autism also have other disorders such as OCD that they would like treatment for but can't access because the autism diagnosis makes them ineligible for that service.

quoted wrong person

To be honest I don't agree. People with autism can be labelled unfairly.
I actually think I am autistic but as a nearly middle aged woman who is single with no kids, I don't want the added stigma.
I personally think it is in my family but none are formally diagnosed. I suspect my grandad, aunt, mum and sister as well as myself are all ND.
I can understand why many don't seek a diagnosis. There are reasons for and against in my opinion.