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 an adult diagnosed with ASD. The diagnosis was life changing for my mental health.
I’m indifferent about Melanie Sykes’ diagnosis - to misquote the Smiths ‘it says nothing to me about my life’. I get more worked up about how difficult it is for adults to access a diagnosis unless they have a lot of money to pay for it. Or how too many people think all people with ASD are the same.
Christine McGuinness upsets me a little the way she monetises her children. But not my circus and all that.

@Figgit

I’m an adult diagnosed with ASD. The diagnosis was life changing for my mental health. I’m indifferent about Melanie Sykes’ diagnosis - to misquote the Smiths ‘it says nothing to me about my life’. I get more worked up about how difficult it is for adults to access a diagnosis unless they have a lot of money to pay for it. Or how too many people think all people with ASD are the same. Christine McGuinness upsets me a little the way she monetises her children. But not my circus and all that.

I'd love to know more about how it changed things for you if it's not too personal.

@Gentleness

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.

Diagnosis is for the following parties.

1. Yourself ; in understanding how you work.
2. Other people ; in requesting help, reasonable adjustments etc.

Under certain conditions 1) might be enough for people. If nobody else needs to be extra understanding, or has a go at you for not being able to do things that other people can then it doesn't matter. If your own understanding of being neurodiverse is enough then leave it be.

My difficulties are similar to you - in a sense that they're not 'severe'. I can hold things together at the cost of everything else. I spend double the amount of time other people take on everything . Which means that by the time I've finished my work, and made dinner ( a simple one that SHOULD take just 30 mins for people who don't get distracted constantly) the whole day is gone. No time or energy to go out, live my life, or have fun just the endless grind of surviving. My life isn't particularly complicated no DC just the two of us.
I liken it to having to think about every time I breathe in while everyone else does it subconsciously. Try it - and see how hard it is.

I didn't want to live like this. Which is why I finally decided to get diagnosed. I did some reading online and tried some tips, which helped but ultimately I needed more help. I was lucky enough to be able to pay for private (DP also contributed to the cost). Adjustments at work and medication have helped enormously plus DP's support.

Ultimately it is for your own benefit so whether or not to get diagnosed is up to you. And nobody really cares. What they I do care about is people self-diagnosing (as in not even trying to get a professional assessment or spoken to a GP at least!) and wanting the same adjustments, 'sharing stories' etc as those who are diagnosed. If they wanted all of that then at least speak to a medical professional about it.

@cansu

I read an article about what she has been saying and I felt v pissed off. All this guff about her autism being the best thing about her and completely rebuilding the education system so children can learn in nature. She seemingly doesn't see or want to see the many people with autism whose autism has blighted their lives. I have a dc with severe non verbalautism and v severe learning difficulties and epilepsy. I don't really see his autism as a gift and the best thing about him.

I felt very annoyed too. "I can't read big numbers" and "I can't listen to the director in my ear and talk to guests at the same time" is not representative of autism. It almost sounded like she just wanted a label to justify her incompetence.

I felt very annoyed too. "I can't read big numbers" and "I can't listen to the director in my ear and talk to guests at the same time" is not representative of autism.

It is for some though. I can't listen and think/talk at the same time. I need one thing at a time

@Caddycat -

“I felt very annoyed too. "I can't read big numbers" and "I can't listen to the director in my ear and talk to guests at the same time" is not representative of autism.”

You know more than the psychiatrist who diagnosed her then? Since that’s obviously all there was to it.

@EdenFlower sorry not doing very well today

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.

Well I would agree with that had Mel not clearly said how much she struggled with certain aspects of her job.

[quote IggleyP]@Caddycat -

“I felt very annoyed too. "I can't read big numbers" and "I can't listen to the director in my ear and talk to guests at the same time" is not representative of autism.”

You know more than the psychiatrist who diagnosed her then? Since that’s obviously all there was to it.[/quote]
I'm not saying this at all. She's reduced autism to something simple rather than what I witness many children struggle with. No one gets a diagnosis simply because they can't do 2 things at once. It may be a trait, but this is literally all she talked about.

@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".

THisbackwithavengeance

The DSM-5 Manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”.

I repeat, limit and impair everyday functioning

If those criteria do not limit and impair everyday functioning, then the person being assessed will not be given a diagnosis, because they are not autistic.

It is possible for non-autistic people to have some autistic traits, but for those traits not to limit and impair everyday functioning.
Those people are not autistic. But often those people read about autism online, recognise a few traits in themselves then self-diagnose as autistic.
And then they declare a formal diagnosis is not necessary because although they have decided they are autistic, they are not disabled, need no interventions and infer they live life like an NT.

Further info about diagnosis here www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences

@Caddycat - It is not literally all she talked about.

She talked about her struggles at school. Being seen as straight talking in a way that others commented on. About being vulnerable because she believed what people said to her.

@Gentleness
Ultimately it helped me understand why I was - and felt - so different. Following my diagnosis no longer thought I was a wicked or bad person. I still struggle with aspects of how my ASD presents, but I no longer blame myself or feel shame. I’m far more accepting of myself and the person I am. I also mask lot less and it’s brought a sense of freedom to be who I am.
That’s not to say I haven’t faced challenges and discrimination, I have, but the mental health burden I’ve carried through my life has lightened enormously.

Haven't RTFT but I've seen some posts that resonate. I think there's a lot of misunderstanding about ASD and how it affects everyone differently. I was diagnosed with Asperger's a few months ago. I told my boss about it, and to be fair he was supportive, asking if I needed anything. But then he showed his ignorance when he referred to it as an illness in a handover report as I was moving teams. I got him to correct that!

I went private for my diagnosis, my mum doesn't understand why I didn't go NHS (it was because of the wait) or why I got assessed in the first place, but then she also doesn't believe the diagnosis. However, she also agrees she doesn't know much about it.

I don't see my Asperger's as a gift, a superpower or anything like that, just as an explanation for why my social skills are awful! They're better than they used to be, but it still takes a lot of effort!

@claymodels

I felt very annoyed too. "I can't read big numbers" and "I can't listen to the director in my ear and talk to guests at the same time" is not representative of autism.

It is for some though. I can't listen and think/talk at the same time. I need one thing at a time

I thought that was normal, not the big numbers. I'm always telling DH off as he insists on talking to me when I'm on the phone, I can't cope with it. Funnily enough he can't either as I discovered when I played him at his own game.

It's around £1500 more or less

@Caddycat what a nasty comment. Maybe she was giving an example of one of many things she struggles with? One that's relevant to her job?

Sorry, that was for @tootyfruitypickle

I thought that was normal, not the big numbers. I'm always telling DH off as he insists on talking to me when I'm on the phone, I can't cope with it.

Oh. Ok.

My DS is autistic, was picked up very quickly by nursery and he was diagnosed young, he has a lot of very obvious ‘classic traits’ (the sort you see listed on websites etc) so it was pretty apparent.

I’m on a few parenting autism groups of Facebook and similar, there is such a huge range in children- some with kids aged 10 or older who cannot speak and still in nappies, many others with children who are able to attend mainstream school and meet ‘normal’ milestones. There are children the same age as my DS who are the opposite in every way yet share the same diagnosis. There’s huge variation. I guess it’s also complicated because nobody is actually sure what autism really IS or what causes it, it’s definition is the ‘traits’.

Now that my DS has been diagnosed and I’ve researched it, I certainly recognise a lot of the traits in myself and definitely my DH, I believe my DH would be diagnosed if he was assessed. Apparently the statistics are 1 in 60 children are diagnosed but I do wonder whether it’s actually a far more sizeable chunk of the population who are on the spectrum.

@Wowthemuggles

It upsets me because, standard thinks they might be autistic woman may go to their local NHS commissioned diagnostic service and not be diagnosed because they are not impared 'enough'. It's all put down to ADHD when really that is only the half of it. That's if they're lucky enough to have had a diagnosis of ADHD in the first place.

How can somebody who has done that well for themselves in life be 'impared enough' for a diagnosis.

I am not impaired enough for a diagnosis. I have to have massive amounts of help from family members. Don't qualify for help from Adult services, but could have quite easily had my children taken away from me due to me just finding the demands of raising young children so difficult.

I see threads on here regularly from.women wondering wether they are autistic and should pursue a diagnosis and I quite often feel compelled to tell them to go to the most expensive, highly regarded diagnostic centre that is available to them. Even if it means taken out a loan or save mg for years. When first referred to my local team a few years ago it was pre pandemic. If I was trying to get referred now I would feel out of order bothering my poor GP with something so mundane or self indulgent. I don't really think it is but this is the feeling Im getting at the moment about anything healthcare related that isn't going to immediately kill me.

Christine and Mel may be truly autistic. Whatever the hell that really means. I might be. They have been helped by their diagnosis and process. I would say I have definitely been hurt by my lack of diagnosis and even if I had received a diagnosis the process was so awful it would have still hurt me.

I may check back tonight but just as likely may not. I hope you get some more replies because I should really change my user name to onemessagewonder or some such.

I also hope no one is offended by anything I've written. I will not elaborate on anything as this has been outing enough as it is.

🙄

You don’t get to decide what is mundane and self indulgent and how “impaired” someone is.

Your post is all over the place.

@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".

Your experience is less because your autism doesn’t affect you as badly as it affects other. Stop being so fucking offensive. I bet you have no problem blaming your rudeness and arseholery on your “autism.”

It's essential that the notion of the autism spectrum is as widely understood as the condition is becoming known.
Autism is prevalent in my family (Nan,uncle,mum,husband,son) and they have as many ASC differences as they do commonalities. My step brother and friend's son also have a very different presentation of autism than those in my family.
The public perception of Autism has come quite a way but there is much further to go.
Take heart, we'll get there. You may find your buds has more understanding than you fear.

@ofwarren thank you

One of the things with this is that if you get to your 50s undiagnosed, then you have an element of coping strategies . However I think for a lot of people it would reduce anxiety etc if you could understand why you had found simple things such as making friends so difficult throughout your life ?

The only thing I'd change perhaps is not to go to huge work sessions or 'do's , plus work remotely permanently - and a diagnosis may help with that - but I was increasingly self excluding anyway even before the pandemic as I had enough of trying to cope . I definitely am better wfh and going into the office does me no good at all.

A number of my family members and children have been diagnosed over the past 5 years so I have been trying to be less self critical and forcing myself to fit in as I've realised it's possible that this may explain a lot of things I find difficult .

Secondary school was hell and I'm so glad that children are having diagnoses at primary these days . I still can't believe no one picked up on me .

I

Yanbu, OP. I have severe adhd and i worry about this exact issue.
What I will say is that it comes down to the observer's own ignorance.
What one person with the 'same' disability can do is very different to what another can do. It's annoying when people can't understand that and I get it all the time but you can't force people to understand. Luckily the world is changing and becoming more aware.

@claymodels

I thought that was normal, not the big numbers. I'm always telling DH off as he insists on talking to me when I'm on the phone, I can't cope with it.

Oh. Ok.

Well can you honestly have a proper conversation with someone on the phone and at the same time listen to someone telling you some news they want you to pass on? I honestly can't. I have to ask one of them to stop while I listen to the other.