Melanie Sykes has revealed she's autistic

[Latenightpharma]

She was diagnosed at 51. Christine McGuiness also shared an autism diagnosis recently, and I wonder how I feel about all this. On one hand I think it's great that people like her are coming forward and are increasing representation, on the other hand I'm worried that others might underestimate how much the condition affects me (also have autism) at work because news outlets tend to report on stuff like this with an air of 'no big deal'.

To be clear, I'm not trying to suggest that Melanie or Christine are less affected by being autistic than I am, I don't know how much it affects them on a daily basis. What I'm trying to say is that someone like my boss might look at this and go 'oh, see, no big deal, do you really need accomodations to work or are you just being difficult? These people manage just fine.' AIBU?

@Grimbelina

I am sorry you are struggling to make people understand how it affects you... but I am hoping the opposite, that it helps people understand that autism can present so individually and that struggles can be hidden.

I have a child like this: amazing masking but falls apart. Getting people to understand that they need accommodations is an ongoing struggle as they 'don't look autistic'.

I am also all for the higher visibility of older women with ASC as this group may well be under-diagnosed.

Oooh, I hear this!! Before we got DD's formal diagnosis, I had so many arguments with the school that went along these lines:

School: But she seems fine!
Me: She does, doesn't she? Do you have any idea how hard she works at seeming fine?

I feel like getting an autism diagnosis now is a bit like getting a mental health diagnosis a few years back, whether that is because the stigma is lessening, in which case great, or whether it is the new trend.

Yeah; we are all getting diagnosed because it's trendy

I understand what you mean op, I hear it a lot when people are talking about my dd and comparing her to people they know with autism. People assume my dd is capable of things that she isn’t because “Chris Packham can do it”. I do think it’s great that people are talking about their diagnosis but I do think people need to be educated about the fact ‘Autism is a huge spectrum and each person is different’. My dd struggles hugely with communicating, she can’t tell me when somethings wrong and she can’t ask me for help but she’s a maths genius and great at taking things apart and rebuilding them 🤣, people assume she should be able to communicate because academically she is very able.

[quote Charley50]@EatSleepRantRepeat - I agree that it was a mistake to get rid of the Aspergers diagnosis. The spectrum of differences / difficulties under the diagnosis autism is now so huge as to be meaningless. From non-verbal, with learning difficulties who will never lead an independent life, to Chris Packham and Melanie Sykes and everyone in between. It should be named differently. [/quote]
But surely the entire point is that 'high functioning' doesn't mean high functioning in every way? Someone with a very high IQ with a PhD in Biochemistry could find relationships impossible and feel incredibly lonely and cut off from the world. Someone else might be able to have a happy successful relationship but be unable to hold down a job. I think it's very unfair to imply that traditionally successful people with high intelligence are somehow less affected. I think in some ways it can be worse - they have the intelligence to know how isolated and abnormal they feel all the time but the inability to do anything about it.

@Branleuse

I think its nice that shes got some understanding and awareness of her life and struggles now, and inspirational that she has still managed to achieve what she has, considering the statistics of autistic people in employment in general. If someones boss says to you "well Melanie sykes is autistic and fine so therefore you dont need any accomodations" - which by the way, is extremely unlikely to happen, I guess you could say well so is elon musk, but im not about to start my own space mission either.

I think its clear that with autism being a spectrum, there are people that still manage to achieve their dreams, maybe in some ways because of their autistic tenacity and traits, and then theres also people that are so disabled by it that they wouldnt even have dreams to be able to achieve. Most autistic people are neither like rain-man, nor are they like Elon Musk. Im not sure why one person being diagnosed means they are supposed to represent the entire autistic population

I am aware that my boss is not going to tell me that Melanie Sykes is proof I don't need accomodations. However, it to me feeds into this wider thing at work. My employer (and probably quite a few in the UK) want to make this push to employ neurodiverse talent, but seem to believe that all that's needed to improve the amount of neurodiverse people at work is to simply hire some. When it comes to actually making it possible for those people to perform and remain in their jobs, they are generally baffled at the idea of needing to make actual changes or accomodations for individuals.

Stories portrayed like the Melanie one on BBC today worry me a bit because they might reinforce the idea that the only thing stopping autistic people from being successful at work is to not hire them because of discrimination.

The more people who are open about their autism diagnosis the better I think. I have two autistic daughters in their early teens and my older one is currently really struggling with her diagnosis. I know this sounds shallow but for her to see glamorous and successful women who are autistic is really really helpful.

And where exactly are these people suddenly getting their diagnosis's from?

I work in a school and I know how difficult it is to get a child diagnosed on the NHS and it's a lengthy process surrounded in bureaucracy with a long waiting list.

Not sure I would trust the outcome of any private' assossociations that are clearly there to make a profit.

@HousethatChunkbuilt

How come people aren't lining up to come out as having personality disorders though?

because still a massive stigma about long term mental illnesses in general, and I expect it would very much depend on how it affected the person and whether they were aware and it was under control as to whether they felt able to be open about it, or if it isnt under control then theres not much hiding it in the first place, which youd need to be able to "come out". Obviously there is no medication for autism as its not an illness in itself, so it is not really the same as a personality disorder

@EdenFlower

And where exactly are these people suddenly getting their diagnosis's from?

I work in a school and I know how difficult it is to get a child diagnosed on the NHS and it's a lengthy process surrounded in bureaucracy with a long waiting list.

Not sure I would trust the outcome of any private' assossociations that are clearly there to make a profit.

A lot of the private ones do NHS diagnosis too. They follow the same pathway to diagnosis.

@EdenFlower

And where exactly are these people suddenly getting their diagnosis's from?

I work in a school and I know how difficult it is to get a child diagnosed on the NHS and it's a lengthy process surrounded in bureaucracy with a long waiting list.

Not sure I would trust the outcome of any private' assossociations that are clearly there to make a profit.

im pretty sure that you dont get a reimbursement on your assessment fees if you dont get a diagnosis, and I think thats quite a harsh thing to say about highly qualified psychiatrists and psychologists who are working in private practice. Private assessments are completely normal due to the underfunding in the NHS, but you cant just rock up and buy a diagnosis fgs. Lots of these people work for both the NHS and privately What profit is there to be made here?

However, I do feel that having a bunch of rich people telling us how easy it is to get the support (specificially with mental health) when I have been sat on a list for 2 years is grating.

So many instagrammers at the moment are talking about their 'therapists', and how 'everyone should go to therapy' and how they will probably continue going for regular therapy for the rest of their lives as it's 'so important' etc.

All of them are clearly paying a fortune for private therapy, and not on an NHS waiting list for 6 sessions!

It might help them come to terms with the way certain situations unfolded in their lives that they currently don’t understand. “Why did I do that ?” becomes easier to answer if you know you function in a nontypical way. This is why I am waiting on a long list to get a diagnosis at 46. I just want to know, there are a bunch of situations from the past and even now where I wonder why things seem to go certain ways. I want my suspicions confirmed and hopefully that will help me make peace with “stuff” and help me seek advice on how to go about things in ways which don’t alienate others quite as much as I do now.

I think it's good to see people that don't fit the can't make eye contact, poor communication profile which is still issue in medicine let alone public.

I'm not saying people get a diagnosis to be trendy. I'm talking about 'self diagnosis' people throwing serious conditions around like confetti. I've got ADHD, I've got OCD, I'm a bit autistic etc.
The truth is I would love for my dd not to have ADHD. I love her but the world is going to be hard and I'm fully expecting to be flamed for this but people don't really care. My DB had a psychotic episode and breakdown last year. It he was honest about this on job applications how many calls back do you think he'd get?
It's like Be Kind, ultimately it's meaningless.

I cant seem to quote your last post OP @Latenightpharma , maybe because you already quoted me.
I do honestly get what youre saying and youre not the only one to consider this side of it. There are a few media darlings with autism that do have the socially acceptable kind, and if youre a working autistic adult then you run the risk of some people expecting you to be an Elon/Melanie/Chris, and just a bit quirky etc, and then other people patronising you or discriminating against you.
All of it boils down to many people just not getting it, and I cant say I blame them. I still think things are really improved from how they were though. If your employer isnt making the reasonable adjustments you need then i hope you have channels to help you with this

I'm not saying people get a diagnosis to be trendy. I'm talking about 'self diagnosis' people throwing serious conditions around like confetti

You said

I feel like getting an autism diagnosis now is a bit like getting a mental health diagnosis a few years back, whether that is because the stigma is lessening, in which case great, or whether it is the new trend.

That was nothing to do with self diagnosis.

Kind of annoys me too... my dd was diagnosed at 2.5 because she was so behind, she's now a young woman at university but within a few minutes in her company you can tell. If you can get to 30+ without a diagnosis and only get one because a private psychiatrist who is being paid by you to tell you what label you have diagnosed you, it's not really a diagnosis is it? The fact they went public makes me even more uncomfortable. Autism is lifelong, I could tell at just weeks old she was different

. If you can get to 30+ without a diagnosis and only get one because a private psychiatrist who is being paid by you to tell you what label you have diagnosed you, it's not really a diagnosis is it?

Yes, yes it absolutely is a fucking diagnosis

As for your 'my DD was diagnosed at 2.5' do you really think that means her autism is more valid than mine I was 2.5 in the late 70s for fuck sake.

It's not a game of fucking one upmanship

Autism is lifelong, I could tell at just weeks old she was different

That doesn't make my diagnosis less real.

FWIW I knew I was different for as long as I can remember.

My mum could tell I was different too. She put it down to child genius at the time. Autism just wasnt diagnosed in girls 40 years ago as it often presents differently.

My daughter is so like my and was diagnosed at 9. If I'd been born 30 years later I would have been diagnosed.

Hopefully with her diagnosis and supoort your daughter (and mine) will do well at uni and get a job. My life has crashed and burned and realising that I am autistic is a huge thing.

What's shocking is the nhs waiting lists. There are a lot of parents of autistic children realising it might explain things for them too. That really isn't to be dismissed. I am hoping my daughter's life, while difficult, will go more smoothly than mine due to insight into autism which I just didnt have.

@HousethatChunkbuilt

I don't think it's the case with Mel or Christine, but dare I say there is a bit of a trend at the moment for women to suddenly claim they're neurodiverse. I was at a dinner party the other day and two women were giggling about their 'ADHD' think 'oh yes it's awful isn't it when I need to do housework but just end up looking at my phone instead!' I thought 'we all do that, we all procrastinate and get distracted and think about a million things at a time'. It's a symptom of modern life! I wish they could see my dd who physically shakes when she has to sit at a desk and can only read whilst kicking her legs at hummingbird speed, who loathes school and will never be able to be in class independently without a full time aid keeping her on track. Even when I get private help they ask to stop the sessions as they can't keep her focussed. I can't help but think some of this is a bit similar to when everyone was 'gluten intolerant' or 'dairy intolerant' a few years ago. I know that it was under-diagnosed years ago but I tend to think it's over diagnosed now due to private 'gun for hire' psychiatrists.

This is very harsh. How do you know they aren't laughing about it as a coping mechanism? My heart sank when I read that because now I wonder if that's what everyone secretly thinks about my ADHD diagnosis. Women are notoriously under diagnosed as children. We are so good at masking and finding coping mechanisms that it might not be until much later that it becomes really obvious, in my case during peri menopause.

@claymodels look back, that second quote wasn't me

I was the same age as Melanie when I was diagnosed. Apparently my therapist said I was so borderline that I was very difficult to diagnose. 51 years of masking. Now I don't mask.

[quote HousethatChunkbuilt]@claymodels look back, that second quote wasn't me[/quote]

Oh it wasn't!! Sorry

@claymodels

. If you can get to 30+ without a diagnosis and only get one because a private psychiatrist who is being paid by you to tell you what label you have diagnosed you, it's not really a diagnosis is it?

Yes, yes it absolutely is a fucking diagnosis

As for your 'my DD was diagnosed at 2.5' do you really think that means her autism is more valid than mine I was 2.5 in the late 70s for fuck sake.

It's not a game of fucking one upmanship

@Latenightpharma this is your problem right here. If even people with autistic children don't get it and indulge in judgment and comparison what hope is there for the general public? Someone like @gogohm won't believe you because you're not autistic enough