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?

I'm a self diagnosed autistic.

My DD has a diagnosis. It took years to get.

It's so obvious I am autistic and my daughter inherited it from me: the more I read about it, the more obvious it becomes.

But so what?

I have a job, a decent life, a nice DH and kids. I don't need disability benefits. I don't see any point bothering a GP or overstretched NHS for a referral which will take fucking years even if if is taken seriously in the first place and will serve no purpose other than me being able to brandish a diagnosis like a medal.

It's my business. Known only to my DH and something I have only mentioned on here in a cloak of anonymity.

My not being diagnosed doesn't make my experience any less than others who've taken themselves off to a doctor or psychologist for "answers".

it is really hard to get a diagnosis, years of waiting,

it is great that Melanie Sykes has gone public though, and she wants education to be made aware. which is all good

@THisbackwithavengeance that's completely different as you're not mentioning it in a 'I'm one of you' sort of way. The lack of sensitivity from Janet or similar with a full time job in accountancy, three degrees and tons of friends saying she understands what I'm going through with my dd as she is a self diagnosed herself as having ADHD. Fuck off, try the school ringing you to gently ask why they keep finding cups of spat out food hidden around the place and you slowly feel all your daughters friends distance themselves from her as she's overly tactile. Heartbreaking.
Not to mention all the autistic/ ADHD kids who also have LD who are largely invisible in all media representations.

@BoredZelda

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.

But that is not quite what I'm trying to get at. I'm specifically talking about this BBC article for example.

BBC News - Melanie Sykes and Christine McGuinness praised for openness about autism diagnosis
www.bbc.co.uk/news/uk-59352983

It ends by saying only 22% of people with autism are in employment, but the article doesn't really mention concrete barriers these women may have faced in that regard. Again, this doesn't mean I think they have not faced them, just that in these kinds of spotlight news articles it isn't really talked about, whilst at the same time always highlighting that autistic people are underemployed. I understand from other posters that both Melanie and Christine have talked about their struggles elsewhere, but I wish it would be more of a focus in any of these mainstream news media.

Sorry, I don't seem to be able to express what I'm saying very well.

My not being diagnosed doesn't make my experience any less than others who've taken themselves off to a doctor or psychologist for "answers".

What's with the "answers" ?

@THisbackwithavengeance

I'm a self diagnosed autistic.

My DD has a diagnosis. It took years to get.

It's so obvious I am autistic and my daughter inherited it from me: the more I read about it, the more obvious it becomes.

But so what?

I have a job, a decent life, a nice DH and kids. I don't need disability benefits. I don't see any point bothering a GP or overstretched NHS for a referral which will take fucking years even if if is taken seriously in the first place and will serve no purpose other than me being able to brandish a diagnosis like a medal.

It's my business. Known only to my DH and something I have only mentioned on here in a cloak of anonymity.

My not being diagnosed doesn't make my experience any less than others who've taken themselves off to a doctor or psychologist for "answers".

You have provided a great example of the very thing i hate about people who think self diagnosis is a ok. Fair enough, you can think you are autistic, but self diagnosis whilst putting people down for being diagnosed

What's the shit about a medal? Really?

@claymodels

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.

Maybe they are, maybe they are just trying to break down barriers, which is a brilliant thing.

Right up till they start saying how easy it is to get a diagnoises and what wonderful support they have. When for most people that is bullshit.

I am not discounting someone's diagnois because they are in the public eye, I am saying their path on getting that diagnoises and any support afterwards is going to be massively different to a lot of people.

I'm thrilled that successful women are talking openly about this. My 11 yo DD is similar (and diagnosed ASC) and she won't engage with the idea she has autism or any of the groups at school as she thinks autism is non verbal, seriously impacted boys. She admits to being sensitive to sound and needing down time as certain things drain her, but mention autism and she rolls her eyes.

She would also go through life undetected and fairly easily (after obvious pre-school signs she learned to mask) if we could ensure that nothing bad or unexpected was to happen to her. However, when things do go wrong the house of cards tumbles quickly and the diagnosis allows us to understand and put safety nets in place.

She was also fine at school pre-diagnosis but has been doing extremely well since as the school were able to help her reach her potential. So using standard measures of success don't mean anything, without autism or without a diagnosis Melanie Sykes might have had a hugely different life, none of us know.

I’m the same age and 100% certain I have autism. My dd has recently been diagnosed at 16 due to struggling with anorexia. She has other SENs too but is bright and although they hold her back she is doing Alevels in a selective school. I’m aware compared to others we are fortunate however autism and not knowing has been a huge blight on our lives. Although not struggling with mental health life would have been so much easier if I’d known and I’m pretty sure dd wouldn’t be dangerously ill if we’d known about her autism sooner. Many people with autism struggle with mental health issues and it shouldn’t be pushed to one side because others have it worse. There should be room for compassion for everyone.

[quote HousethatChunkbuilt]@THisbackwithavengeance that's completely different as you're not mentioning it in a 'I'm one of you' sort of way. The lack of sensitivity from Janet or similar with a full time job in accountancy, three degrees and tons of friends saying she understands what I'm going through with my dd as she is a self diagnosed herself as having ADHD. Fuck off, try the school ringing you to gently ask why they keep finding cups of spat out food hidden around the place and you slowly feel all your daughters friends distance themselves from her as she's overly tactile. Heartbreaking.
Not to mention all the autistic/ ADHD kids who also have LD who are largely invisible in all media representations. [/quote]
I've got a full time job in a well-paid field, three degrees and friends (not tons of friends, but some). Doesn't make me any less autistic or ADHD. You have no idea about my life or what it has taken to get to where I am today. The years of depression, anxiety, self harm, borderline alcoholism, failed relationships, broken friendships, lost jobs, inability to grasp basic life skills like driving a car. I'm sure if I mentioned ADHD to you at work, you'd think I was some silly air headed millennial latching onto a 'fashionable' diagnosis because I outwardly appear pretty normal and friendly. You have absolutely no idea what anyone's life has been like.

Just.Stop.Gatekeeping.

@THisbackwithavengeance. That was really rude.

Does your daughter only have a diagnosis so she can “brandish it about like a medal”?

Maybe you don’t need reasonable adjustments (and actually, maybe you are not autistic at all !) but that isn’t the same for everyone. Maybe you are satisfied with diagnosing yourself, but that isn’t the same for everyone. Maybe you don’t want to publicly share your story (of your non diagnosed autism), but that isn’t the same for everyone.

Your comment was really judgemental.

It ends by saying only 22% of people with autism are in employment, but the article doesn't really mention concrete barriers these women may have faced in that regard. Again, this doesn't mean I think they have not faced them, just that in these kinds of spotlight news articles it isn't really talked about, whilst at the same time always highlighting that autistic people are underemployed. I understand from other posters that both Melanie and Christine have talked about their struggles elsewhere, but I wish it would be more of a focus in any of these mainstream news media.

Media are poor at reporting disability issues - shocker. Twas always thus and will likely always be.

I recall everyone telling me I had to watch a documentary about Lewis Hamilton’s brother who has CP. He was so inspiring, what he has overcome, I’d be uplifted.

What I saw was a young man who had some mobility struggles, who lived with a very wealthy family who could pay for shoes to be specially designed for him and who got a leg up into a motor racing career because of his brother. There was not a single thing about how his CP impacted on his life or the struggles he’d had.

I can see where you are trying to come from on this but the issue isn’t with Melanie Sykes, it is with how disability issues are reported in the media and how they are perceived by society. You can either be annoyed about it, or accept it’s going to happen and just speak out where you see it.

@THisbackwithavengeance - and actually, being self-diagnosed DOES make your experience less as you didn’t have to jump through a million hoops to get it.

It also isn’t on your medical records and you don’t have to disclose it on occupational health forms or insurance applications as you are not diagnosed … therefore you can have it when our suits you and not when you don’t want it.

@THisbackwithavengeance

I'm a self diagnosed autistic.

My DD has a diagnosis. It took years to get.

It's so obvious I am autistic and my daughter inherited it from me: the more I read about it, the more obvious it becomes.

But so what?

I have a job, a decent life, a nice DH and kids. I don't need disability benefits. I don't see any point bothering a GP or overstretched NHS for a referral which will take fucking years even if if is taken seriously in the first place and will serve no purpose other than me being able to brandish a diagnosis like a medal.

It's my business. Known only to my DH and something I have only mentioned on here in a cloak of anonymity.

My not being diagnosed doesn't make my experience any less than others who've taken themselves off to a doctor or psychologist for "answers".

maybe you think you might be, in fact suspect very strongly that you are, indeed autistic. Sharing traits and a family background does strongly hint at it.

so you can say, yes, you suspect you are. What you cannot say is that you definately are, because you havent been diagnosed, for whatever reasons you choose. And it seems you do not feel it impacts upon your life. well thats great for you and Im glad about that for you. And no, your lived experience is valid, but its not official.

However there are 2 things wrong with this - you seem to think others are only doing this for a label? These answers we get are most usually related to problems we have had. Its not a 'nice to know' kind of thing, its a 'why the fuck does this keep happening / cant I cope'

most people cant afford to fork out the price for assessment just for shits and giggles. And as said, the waiting lists are ardously long and hard to get. Nobody is doing it for fun if they havent come to some sort of crisis point. Its not a hobby or an alternative talking point. We often need to self adapt. Or understand how we need to work, or have adaptations at work after failing again.

And secondly, you insistance that you ARE autistic, (as opposed to highly likely to be autistic) opens the door for others who definately are not to come barging in and taking over the space. You might not need the gatekeeping of official verification for your own life, but plenty of us DO need to keep the distinction clear because of the self IDers and the harm they will do, especially to those who really cant advocate for themselves, and who's diagnosis isnt a blessing

Also you have to question the 'it's so obvious I'm autistic' when it's followed up with 'only DH and DD know'

Not so fucking obvious at all then, is it?

[quote HousethatChunkbuilt]@THisbackwithavengeance that's completely different as you're not mentioning it in a 'I'm one of you' sort of way. The lack of sensitivity from Janet or similar with a full time job in accountancy, three degrees and tons of friends saying she understands what I'm going through with my dd as she is a self diagnosed herself as having ADHD. Fuck off, try the school ringing you to gently ask why they keep finding cups of spat out food hidden around the place and you slowly feel all your daughters friends distance themselves from her as she's overly tactile. Heartbreaking.
Not to mention all the autistic/ ADHD kids who also have LD who are largely invisible in all media representations. [/quote]
I think you've inadvertently stereotyped many other people with ASD/ADHD into your criticism there - lots of people have struggled and have managed to get degrees and professional jobs and they also have to deal with all the incredibly frustrating and heartbreaking aspects of being neurodivergent and/or being the parent of ND children.

I don't think it helps to generalise about these different factors as you don't know what other people have gone through. Having a job/degree/friends doesn't mean it has been any easier for those people, and it doesn't mean those other difficulties didn't also arise for those people.

Sorry not even the DH and DD, just the DH.

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.

You misunderstood my point, I put "informed" to indicate I didn't think it was actually informed. Which is why I said "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." i.e. I don't think seeing Melanie Sykes as the example of autism is any better at informing public opinion that Rainman was

I hope that makes it clearer.

I don't see any point bothering a GP or overstretched NHS for a referral which will take fucking years even if if is taken seriously in the first place and will serve no purpose other than me being able to brandish a diagnosis like a medal.

My not being diagnosed doesn't make my experience any less than others who've taken themselves off to a doctor or psychologist for "answers".

If the only purpose of seeking a diagnosis is to brandish it like a medal, then you don't fit the criteria for a medical diagnosis anyway - if it's not impairing your everyday functioning, you wouldn't meet the medical criteria.

People seek diagnoses when autism is adversely affecting their daily lives. If you are doing fine, then that's great for you. But it might be worth considering whether others might be struggling a bit more than you are if you think they're just after a meaningless bit of paper.

I'm interested in the different attitudes to diagnosis on this thread. Deciding to seek diagnosis is not a simple choice. I think some of us have been so concerned not to make a fuss and so aware we might just be weak that we resist seeking diagnosis because it might simply confirm we're just crap at life and friendships. Ok, me, that's talking about me.

I don't agree with self diagnosis, but I do want to understand whether the struggles I feel are genuine or just due to my laziness. My difficulties are not severe, though they are holding me back, and seeking diagnosis through the NHS seems inappropriate. They're unable to provide decent mental health support (we made sacrifices and paid for that) and I've been on a waiting list for specialist HRT help for over a year. To go in and talk about another "maybe" seems wasteful. We could use savings again and pay for private help, but the HRT help is going to be more life changing so takes priority. I doubt I'll ever get more insight into whether I have ASD than the series of online tests I've taken to try and work out if it's worth seeing a professional. Would it be worth it or naval gazing? I just don't know.

@THisbackwithavengeance

I'm a self diagnosed autistic.

My DD has a diagnosis. It took years to get.

It's so obvious I am autistic and my daughter inherited it from me: the more I read about it, the more obvious it becomes.

But so what?

I have a job, a decent life, a nice DH and kids. I don't need disability benefits. I don't see any point bothering a GP or overstretched NHS for a referral which will take fucking years even if if is taken seriously in the first place and will serve no purpose other than me being able to brandish a diagnosis like a medal.

It's my business. Known only to my DH and something I have only mentioned on here in a cloak of anonymity.

My not being diagnosed doesn't make my experience any less than others who've taken themselves off to a doctor or psychologist for "answers".

If it's your business, known to only you and DH then me saying you're not autistic doesn't matter , right? After all you don't want a 'medal', or any recognition. It doesn't cause you any problems, since you can't see why other people want medical advice.

Don't worry I understand completely. I'm actually a pineapple, I've read lots about this, and it's really obvious.

How much does it cost to go through a private assessment does anyone know ? For me, being able to make sense of my childhood would help a lot- and the pandemic has really allowed me to let my 'mask' slip and revert to usual ways, which is a relief tbh. I'm assuming I could be autistic and giving myself a break rather than always feeling like I'm weird. Not making myself do things I don't really want to. I'm sure if I was at school these days I would have been assessed. It's sad how little awareness there was .

[quote OhDear2200]@EdenFlower I find your suggestion that people who only ‘know’ that their child was different at 2.5 massively offensive. That’s your experience not everyone’s. It’s a crass opinion that hugely ignores the years of confusion and worry for people.

I would have hoped a parent of an autistic child would understand that.[/quote]
I think you were talking to the wrong person here!

I guess it depends on the individual, some people clearly feel the diagnosis is worth it. I think the other important thing is that even if you don't have something with a label it doesn't make your struggles any less, they are what they are.

I worked with someone who was non verbal and very vulnerable who had a ASD diagnosis for 30 years, new psychiatrist saw him and said he didn't have ASD and his diagnosis was changed. It didn't change anything, he had exactly the same needs and exactly the same support as before.

I hope you get your HRT sorted out soon.

I got my autism medal when I was 46 - very fashionable it seems.

None of us know what Melanie’s life has been like behind closed doors - but I’ll bet it’s been really fucking hard and because she’s slim/beautiful/successful will have been told she’s bitchy/uptight/aloof/snobby.