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 think part of the problem here is the removal of the term Aspergers in favour of a wider autism description. I've often felt that my 'type' of autism does severely intellectually impaired people a disservice, because others in my community at work have said their bosses have unfavourably compared their coping abilities to mine.

I worry about the 'you wouldn't guess' / 'surprise!' tone of these articles - masking is painful and incredibly stressful, I regularly melt down at home after a long day holding it together at work. If I wasn't expected to copy NT behaviours to hold down my job (eye-contact, large meetings, face to face networking) my life at home would be far more restful - WFH has been a godsend for that.

@EatSleepRantRepeat

I think part of the problem here is the removal of the term Aspergers in favour of a wider autism description. I've often felt that my 'type' of autism does severely intellectually impaired people a disservice, because others in my community at work have said their bosses have unfavourably compared their coping abilities to mine.

I worry about the 'you wouldn't guess' / 'surprise!' tone of these articles - masking is painful and incredibly stressful, I regularly melt down at home after a long day holding it together at work. If I wasn't expected to copy NT behaviours to hold down my job (eye-contact, large meetings, face to face networking) my life at home would be far more restful - WFH has been a godsend for that.

I agree.

I was diagnosed with Asperger's and it's very different (imo) from severe autism. Yes, both conditions may be on the same scale but using one word to describe both does people at both ends of the spectrum a huge disservice imo.

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.

I do understand what you are saying.

I was a child of the 1980s and had all the classic signs of autism - I struggled to make eye contact, couldn't cope with hugs, "rocked" back and forth to music and sometimes during lessons would rock on my chair, withdrew from friendships, couldn't cope with changes, struggled with busy/ noisy environments.
My brother (2 years younger) also had signs.

My brother chose to seek a diagnosis as an adult, and says it really helped him to have that clarity. It said it was like a huge release to him and that everything made sense.

I on the other hand have chosen not to.
I still have a lot of the traits I had as a child - social anxiety, struggle to make eye contact, can't cope with busy places etc.
Two of my children are on the spectrum and I do feel a lot of unjustified guilt.

I think everyone feels differently about it, but I'm just happy being me.

God, its like anxiety and depression everyone seems to have it so the ones that actually do have it then struggle to access services. so you're doubting all their diagnosis?! How do you know there aren't that may people who "actually do have it"?

@x2boys

Well it's great she feels able to talk about her diagnosis ,but it does nothing for autism awareness for those that are most severely impacted ,when they had that chase presenter ,whose name escapes me on I'm a celebrity a few years ago ,I got into Facebook discussions,with people they were saying autism definitely isn't a disability ,I pointed out that for my non verbal severely autistic son it definitely is .

I understand. I used to work in a setting with autistic adults who will spend their lives in care and non verbal. Autism truly is a spectrum.

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.

I think there might be two separate issues here. It seems women are underdiagnosed for lots of reasons so to see women coming out with their diagnoses and being able to show the world that you don't have to be a white boy to be autistic is surely a good thing.

The issue, I think, might be more that people generally lack an understanding of what autism actually is. They either see it as someone who is non verbal and struggles to function in many ways, or rain man. I recently referred to Greta Tunberg being autistic and the people I were talking too just wouldn't have it as she doesn't seem it apparently.

So I fully see your dilemma / issue here but I do think that more women 'coming out' as such will only help further the understanding of autism which hopefully in turn will give opportunities for wider awareness about how much of a spectrum it is and also how much women in particular can mask their struggles.

Absolutely @HousethatChunkbuilt

@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.

Ha! My DC very much appears to be living a ‘full and happy life’ to the outside world. Because they hold it together in the ‘outside world’ at home I promise they don’t…..

My bet that this is the same for these two women. I’m assuming that they wanted some answers to why they found life so bloody difficult. For example (my life yesterday) hysterical crying over a minor difficulty that everyone manages day one day out. Or last weekend trashing the whole house due to finding times tables overwhelming.

I can see both sides here - I think its great for some representation of women, especially older women - and I am thankful that the almost old boys club of 'its a MANS problem for MALE psychologists to talk about' seems to be cracking.
But I do agree that there is a risk of the many 'celebrate it dont diss it' brigade forget that there are a huge number for whom it is not a blessing.
I can understand that, especially with many more women and girls being diagnosed, that the fairly rigid criteria of aspergers and Autism, didnt cover the whole spectrum, and PDA through a whole spanner in the works, when that was also recognised. The theory being that HOW your autism affected you in different ways could be described and hopefully offer more person based support, but by chucking everybody under the same umbrella it does appear that the loudest advocates dont really want to acknowledge the people for whom life is extremely difficult.
This has also been compounded by the newest development, which is the 'identify as autistic' crowd - who are all celebration and who accuse parents of extremely low functioning autism as ableism. They are pushing to remove any kind of diagnostic need or pathway, as 'they know themselves better than any psychologist' and deem psychology and its many years of clinical evidence as white colonialism and gatekeeping. I feel saying you think you MAY have autism is a whole different ball game to self diagnosis off the internet.

So yes, I am pleased more women are getting proper diagnosis. I believe we need to remember that autism (and I, and all my family have it) looks different in differnt people, and you dont know the struggles people may be having / things they avoid, yes some people can be successful with it, but likewise some people's livves are an absolute living hell for them and their families. But I really believe we need to maintain really thorough and experienced clinical diagnosis pathway open to all, so as not to allow the autistic community, and the autistic support for those who qualify, to be destroyed by people who are most likely highly abusive and narcissistic

@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.

I think the more different presentations that people see of autism is ultimately to everyone's benefit.

I remember when Rainman came out and everyone suddenly thought that everyone with autism must be a savant... and if you didn't know what their 'gift' was, then you just hadn't tried hard enough to find out what it is. However, at least it raised the profile of ASD.

I also don't know whether splitting off the group into Aspergers and Autistic ultimately helps those with ASD. Maybe it it gives a (very) crude structure for people who don't know much about it to understand it... but ASD is so multi-dimensional that very few people fall into just the two categories.

The same issue is sort of happening with the ASD/PDA diagnosis (which is recognised in some places and not in others). It defines a subset and is expressed in multiple ways e.g. PDA, ASD with PDA, ASD with demand avoidance traits etc. etc.

We need a better understanding of all of this generally... and maybe a different way to express the differences in terms of needs and supports, so focused on the actual individual with ASD.

@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.

More awareness of the whole spectrum is what is needed and the fact it very much affects people individually ,you have met one person with autism ,you have met one person with autism.

@Cakeandslippers

I think there might be two separate issues here. It seems women are underdiagnosed for lots of reasons so to see women coming out with their diagnoses and being able to show the world that you don't have to be a white boy to be autistic is surely a good thing.

The issue, I think, might be more that people generally lack an understanding of what autism actually is. They either see it as someone who is non verbal and struggles to function in many ways, or rain man. I recently referred to Greta Tunberg being autistic and the people I were talking too just wouldn't have it as she doesn't seem it apparently.

So I fully see your dilemma / issue here but I do think that more women 'coming out' as such will only help further the understanding of autism which hopefully in turn will give opportunities for wider awareness about how much of a spectrum it is and also how much women in particular can mask their struggles.

This OP. And actually the only way for people to take it seriously is to listen to the autistic person in their lives - if you know one autistic person, you know one. DP is autistic and nobody can tell from the outside. High paying job, managed a team. However he's lucky that his profession is his special interest. At home his autism is really obvious.

People need to understand that it's a spectrum condition and that the degree to which people are impacted differ. Again a lot of high functioning people can keep it together for the outside world but people don't know what goes on behind the scenes. Compared to a neurotypical it's harder. I don't pretend that it's harder than a non-verbal autistic person for instance but the struggles are very personal

She was diagnosed at 51. Christine McGuiness also shared an autism diagnosis recently, and I wonder how I feel about all this.

I don't think you get to feel anything.

I'm actually fed up with autism gate keeping. The arguments from all sides about whether there should be functioning labels, people raging because their child struggles much more so someone who doesn't struggle so much should not be allowed a voice - it goes on and on and it's utterly ridiculous. Many conditions have 'variations' and nobody should be in some sort of competition to validate their/their child's autism over someone else's experience.

The only thing I really object to is the 'self diagnosis' brigade who shout the loudest but know fuck all.

@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.

I think it can go the other way too, though. I imagine people might think I'm "jumping on the bandwagon" if they don't already know I'm autistic, since I've become infuriatingly good at masking. 😩 I struggle badly with social interactions and my depth perception is abysmal which makes driving quite tricky at times, but I usually end up having a melt down/shutting down when I get home, so no one outside of the house would tend to see that side of it.

I appreciate what you're saying entirely OP.

I was diagnosed in my mid 20's after struggling my whole life.

People are VERY ignorant about the daily struggles.

In my opinion the only understanding most people have of autism is mutism, disruptive, aggressive and just plain 'weird'. If you don't fit this box you're 'fine' and 'there's nothing wrong with you'. You're 'wearing a label'.

I fully believe autism is hereditary in the same way of any other condition. Now I am diagnosed I find myself recognising it a lot more in other people around me.

My Mother suffers, so did her Mother before. My Father suffered in a different way and so does his Mother.

Neuro-diversity is not linear, we all have different quirks that people cannot understand and I don't believe they ever will.

All I can hope is that the increase in diagnosis will make it a more acceptable 'disability' (I FUCKING HATE THAT WORD) in the upcoming years. People will understand it more.

50 years ago no one understood cancer. That has changed.
20 years ago no one understood mental health issues and suicide. That is changing.
Hopefully this will too.

@claymodels

She was diagnosed at 51. Christine McGuiness also shared an autism diagnosis recently, and I wonder how I feel about all this.

I don't think you get to feel anything.

I'm actually fed up with autism gate keeping. The arguments from all sides about whether there should be functioning labels, people raging because their child struggles much more so someone who doesn't struggle so much should not be allowed a voice - it goes on and on and it's utterly ridiculous. Many conditions have 'variations' and nobody should be in some sort of competition to validate their/their child's autism over someone else's experience.

The only thing I really object to is the 'self diagnosis' brigade who shout the loudest but know fuck all.

Oh god yeah the self diagnosed brigade can definitely do one .

Im going to go against the trend here and say Im glad that Asperges category was got rid off.

My DC when in full meltdown is just as ‘disabled’ as those who are nonverbal etc. She’ll require a level of care for her life and yet can ‘function’ in mainstream life. But it can go ‘wrong’ very easily very quickly. I’m not sure what job she’ll be able to keep down.

@Lucyinthesky07

I do understand what you are saying.

I was a child of the 1980s and had all the classic signs of autism - I struggled to make eye contact, couldn't cope with hugs, "rocked" back and forth to music and sometimes during lessons would rock on my chair, withdrew from friendships, couldn't cope with changes, struggled with busy/ noisy environments.
My brother (2 years younger) also had signs.

My brother chose to seek a diagnosis as an adult, and says it really helped him to have that clarity. It said it was like a huge release to him and that everything made sense.

I on the other hand have chosen not to.
I still have a lot of the traits I had as a child - social anxiety, struggle to make eye contact, can't cope with busy places etc.
Two of my children are on the spectrum and I do feel a lot of unjustified guilt.

I think everyone feels differently about it, but I'm just happy being me.

Sorry if I am rude, but I think you are misunderstanding what I am saying. I'm not saying that you shouldn't seek diagnosis, or that I'm in any upset or uncomfortable with Melanie or anyone getting diagnosed. That part is good.

My issue is with the way this is framed in the media. A poster earlier said it when they said 'you can't even tell, look'. The media reports on this similarly to how they would report on a celebrity coming out as gay. As someone who is perhaps 'different', but not functionally different from anyone else. I get why they do it, but I'm worried it might give the false impression that anyone who is autistic and who is able work can do so without needing any outside help or accomodations. And that people who are sceptical of my disability, might look at an article like this and not understand why I would need all these adjustments, given 'other people who are autistic and at work manage just fine without them'.

I didn't know who she was. But it makes me feel even worse about myself as an autistic woman when other autistic people can be so successful. I've never been able to work and have to have professional support to manage daily life.
I know it's not about me and it's good for her she had answers.

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