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?

@OhDear2200 My DD - who lives 30 miles away - is still waiting over 3 yrs later. I wasn't questioning what you said, just stating my own experience.

@CallMeBettyBoop 👍 sorry!

@claymodels
so sorry you had to go through that!
This thread has indeed been eye opening.
We know now what everyone else thinks of us. Not just the general public but people who have autistic family members.

That we've spent lots of time, money and effort for no reason other than wanting a get out of jail free card (newsflash : it's the opposite).

That we're faking it, not neurodiverse enough, have no problems because nobody else sees it.

Maybe it's an NT thing - these people have family members that are ND, they themselves are not ND, so they don't understand how it works.

@HousethatChunkbuilt

So on MN you can self diagnose as being autistic or having ADHD because the NHS waiting lists are longer but you cannot self ID as a man or woman where waiting lists to start the process are longer. I feel sometimes we are sleepwalking into this place where rational thinking is becoming rare. Obviously if every professional you ever meet says 'yes you definitely have x' and it limits many aspects of your life (professional/social) then your diagnosis is more meaningful to you. Spending too much time on the internet means that you are more likely to think 'that's me' because we by nature we try to relate to things. My question is why are people not googling 'do I have bipolar or avoidant or antisocial personality disorders?' and getting a private diagnosis. Also what does a diagnosis give you at 40 years old? My friend is quite plainly on the spectrum and has no interest in getting a diagnosis. Her quote was 'what would change?'

How do you know they're not doing that? Also you're doing the same thing - taking an individual person on the spectrum and using them for everyone else.

Someone else could come along and argue that your daughter is still able to feed herself, doesn't try to injure herself and doesn't require 24 hour care - so why are you making such a big fuss?

Also you're lying again about the self diagnosis. You previously stated that it's over-diagnosed and you're suddenly changing your story to self-ID.

@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.

yes, and thats exactly what the B*H of a referal unit head told me about my daughter

'you will get the diagnosis you pay for'

and I took her to the most experienced man I could find - recommended 7 years ago as an expert with girls, ex trustee for NAS, ex head of childrens MH services, expert witness. And then our NHS assessment came through and I took her to that too.

why would a professional stake their career on dishing out some fake diagnosis - to what benefit? They dont charge more for a fake one. The process is the same, its just carried out over just shy of a week in a 1-2-1 setting, it is in fact possibly more thorough. They have waiting lists too. Why risk their professional reputation, risk being struck off. Because once youve been through their door, they dont make any more out of you.

And its not as if it actually offers you any extra support in alot of cases - once you have the ASD diagnosis, you are kicked off CAMHS, because its not a mental health problem. And the fight with the school for an EHCP is still the same - because thats all down to observation and intervention

Im sorry, but this attitude that you can buy yourself a diagnosis makes me really angry

@OhDear2200 no problem. I've been misunderstood a lot over the years - quelle surprise

@gogohm

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

dont forget that for many of us, autism was not recognised when we were still young, and Aspergers was not in the DSM until 1987. I left sixth form in 1984.

And even more recently, it was really uncommon for girls to be considered, unless they fell down the extreme end, and Ive seen reports that many assumed they had brain damage, not autism, as autism was for boys.

So yes, you may find women in their 40s and 50s getting a diagnosis. I am one of them. And despite being artistically and academically gifted, being the child at 15 voted 'most likely to be a success' , I cannot hold down a fulltime job for more than 2 years without having a breakdown. And I cannot function in a corporate role at all.

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.'

I can see why you're worried about this if you already feel that your workplace isn't particularly accommodating in terms of disability, OP.

But if your boss or colleagues aren't taking your disability and the ways it affects you seriously, the media they've digested that have caused them to form those opinions about your condition is completely irrelevant to the actual issue of how they are potentially discriminating against you, which would be illegal.

It doesn't matter if they've read an article or listened to a podcast about autism or whatever - if they aren't making the reasonable adjustments they're required to make or are harassing your due to disability, then you are protected under law, regardless of what some random news article says.

Cansu: "All this guff about her autism being the best thing about her and completely rebuilding the education system so children can learn in nature. "

I agree. I don't agree with her views. I don't feel that way about it. I'm all for raising awareness of autism. But the way she feels about it, I don't.

If you read Christines book you will see how not fine she has been and how much it has affected her life, I don’t see any of these people saying it’s fine.
I was diagnosed aged 40 after a life time of thinking I was just a failure of a human, we need more women to be open about it to realise how many of us are out there.

@SoupDragon

I'm a similar age to Melanie Sykes and when I was a child' autism didn't exist in the same way it does now. It was all down to being naughty or whatever. The same with ADHD - looking back, the "naughty boy" in my primary classes very clearly had ADHD.

Autism existed at that time, but people like Mel Sykes, and indeed probably all of the people who are able to respond on here who have a diagnosis of autism, would not have met the diagnostic criteria for autism. The children who would have been diagnosed with classic autism would have been nowhere near a mainstream school, and many would have been institutionalised.

@JaniieJones

God, its like anxiety and depression everyone seems to have it so the ones that actually do have it then struggle to access services.

Who cares if she is autistic. She seems to be living a full and happy life surely she could focus on that.

Christine mcguiness had anorexia, depression, no friends, and a really hard time coping as an adult. She’s as entitled to a diagnosis and help as anyone.

@claymodels

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

Sorry Claymodels, just to clarify, I am not talking about the public, I am taking about rich people or people who are trying to get into the spotlight. As I said, maybe its because they don't feel as much stigma or maybe they are jumping onto the next bandwagon, whether than is mental health, gender or sexuality, autism, then onto the next thing.

I have seen how difficult it is for people to get a diagnosis, especially adult women and for those people who can't go privately its a fucking long slog,

But when someone in the public eye comes out and tells me they have something, which is a hot topic at the moment, I do tend to take it with a grain of salt

@HousethatChunkbuilt I dont agree with self diagnosis. I do believe that people may think they might have autism/ADHD, but without a professional outside perspective its impossible to know for sure. And a great number of people who go for assessment find out that they dont.
But identifying as autistic without professional assessmement, and then loudly taking over autistic spaces and trying to control the process, is as abhorrent to me as self identifying into womanhood. And in many cases its the same thing, and I suspect they dont want an actual diagnosis as their fraud would show up

Sorry Claymodels, just to clarify, I am not talking about the public, I am taking about rich people or people who are trying to get into the spotlight.

Right; that makes it better then

As I said, maybe its because they don't feel as much stigma or maybe they are jumping onto the next bandwagon, whether than is mental health, gender or sexuality, autism, then onto the next thing.

Or maybe it's because they are autistic. You can't dismiss someone's diagnosis because they are in the public eye.

[quote ancientgran]@Cakeandslippers I think it can only help wider understanding of what a spectrum it is if people see just as much exposure of all points on the spectrum. Just as Rainman "informed" a generation so can these cases "inform" a new generation.[/quote]
But Rainman didn't inform a generation correctly, most people with classic autism aren't savants and for people to assume that somebody with autism, who is non-verbal and has a learning disability, must also have an amazing talent was not helpful.

@Malibuismysecrethome

I think it would be more helpful if they explained how their autism effects them. As a previous poster pointed out they are both successful so it would be helpful to know what aspects they struggle with. There are so many spectrums. I know they don’t owe me an explanation but it would clarify their proclamation that they are autistic.

Christine has written a book about her life with a lot of detail about it, however they are not ‘proclaiming’ they’re autistic, they’re just revealing it. As is their right.

She has ADHD and a lot of people who know her are saying they aren’t surprised.

[quote NettleTea]@HousethatChunkbuilt I dont agree with self diagnosis. I do believe that people may think they might have autism/ADHD, but without a professional outside perspective its impossible to know for sure. And a great number of people who go for assessment find out that they dont.
But identifying as autistic without professional assessmement, and then loudly taking over autistic spaces and trying to control the process, is as abhorrent to me as self identifying into womanhood. And in many cases its the same thing, and I suspect they dont want an actual diagnosis as their fraud would show up[/quote]
Yep totally agree ,and often they bully parents online who are struggling with their child's severe autism for not seeing it as "a gift" .

@gogohm

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

Fuck off. I was hyperlexic in 1981, at 18 months reading 3 languages. That just made me gifted. I was sitting GCSEs at 9, that just made me gifted. I had no friends, I had eating disorders and self harming by 11, I was just highly strung. I was doing university level maths and English at 13. But I as unhappy and self medicating on drugs and alcohol by 14. I have never held a job for more than 6 Months, I have scars from hurting myself in meltdown.

I wasn’t diagnosed because no one was interested in helping me, just exploiting my ‘intelligence’ and using me as a poster child for his awesome they were.

You know nothing about other peoples lives.

[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]
Definitely agree with this. With the widening of the diagnostic criteria for autism, public awareness of what autism is has changed massively over the last 20-30 years (if they had even heard of it 25 years ago).

If you tell people someone is autistic, they will assume they are verbal, maybe just a bit quirky, but can generally function independently. They don't consider that you are talking about someone that as an adult needs/will need full-time support.

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?

Yes, because it is all about the spectrum, just like any other condition. Dyslexia, Down Syndrome, CP, MS etc, all depend on how these things affect the individual. One could say the same for you working. Someone with autism who can’t work might say you are wrong to be working as it makes people think everyone with Autism can work and that makes things harder for them. I’m sure those who’s lives are really affected by dyslexia are sick of hearing how Einstein was dyslexic and Branson is dyslexic and why aren’t you a genius or a billionaire.

It should be named differently.

Why? It is a medical term. That’s like saying cancer should be called something different depending on how ill it makes you.

My daughter has cerebral palsy. I will guarantee everyone here will have a different mental image of how she is.

@gogohm

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

Did it ever occur to you that that your DD was diagnosed because it was, what, the early 00s, and not the 70s or the 80s when many of us were children? The concept of girls being autistic wasn't even widely recognised back then. People could tell I was different alright but the word autism was never mentioned. It's really horrid when people gatekeep like this.

Melanie Sykes has been clear that it has been a struggle and she has needed extra support for some things. She’s also suggested that the education system needs overhauling.

I applaud her and anyone reading her story wouldn’t assume it was easy for her!

I’m glad she’s highlighting this. I think our education system sucks and is even worse for those with autism.