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 in America they have different levels of autism to show how much a person needs support and how it impacts them ,for me and I accept others won't agree it ,s the way to go,it might also help in pointing people in the right direction to get help in my Lea for example there are quite a few charities that support children with autism ,but a lot are aimed at children who for want of a better word are higher functioning ,this is obviously a good thing for them but my child just can't access them he has no interest in gaming ,or mine craft or lots of other activities they put on he would be happy to spend the day sitting I the sink and pouring water into different cups and jars etc it's not one size fits all
And then there is also the fact that for many people with autism they have co morbidities

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.

No, I can't. I'm not sure why you are asking though, I said I can't do this.

@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.

This 100%

“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”

So so offensive!!

My DD is now 22, I also knew that there was something different from a very young age too. I was blocked at every turn by health professionals, school staff, etc etc. I suspect it was because I was a young, single mum, and they just wanted to tar me with the lazy brush.
I even had a teacher tell me that my DD could have no problems as her older brother was on the G&T register. Obviously, they didn’t believe 2 siblings could be different. And they are , they’re chalk and cheese.
Anyway, I kept fighting, but was blocked at every turn. I would end up in the school crying and told it was my parenting. I attended courses. I was pushing for dyslexia tests too as her father is dyslexic but again they said nope she’s fine. Even though she couldn’t read or write properly until going to high school.
Fast forward, her teen years were horrific. Putting herself in dangerous situations despite my trying to protect her. And again begging school for help and nothing.
Until she went to college- suddenly a dyslexia diagnosis.
When she was 19, we demand a new GP send a referral for ASD assessment. They met her, she’s done the assessments. That was 3 years ago, here, there is a major waiting list. She was told in summer that she is 400 on the list, so could be waiting another 2-2.5 years. The team have all but told her she is autistic, but they cannot formally diagnosis her until she meets the team again in…. 2 years.
Her life is on hold. She works, but she spends her free time in meltdown because she feels she has to hold it all together so much for everyone else.
Her fathers family have no idea how to handle her. They tell her she’s ‘putting it on’ and lazy.
If I had the money I would pay for the private diagnosis.

But anyway, getting to an older age without diagnosis does not mean you are doing fine and do not need that diagnosis. It means that you are one of the many women who slipped through the cracks because you were/are so good at masking when in school/college/work. Or you/parents were ignored when trying to push for help.
It’s well known there is a crisis now of women of 30+ getting ASD/ADHD diagnoses because they were ‘missed’
Do some research, or possibly look further than your own backyard.

I'm so sorry for some of the experiences people are having here, and the self-diagnosis debate is a hard one. I think the media are really focusing on the autism label but the vast majority of people don't understand the overall impact and impairment when trying to lead a normal life.

I've always been incredibly academic but I've been let go from so many jobs because of my issues - not seen as a team player, not getting along with the right people, not able to lie about things (like telling the MD their latest idea is a crock of shit). Unable to function well at events, and in meetings when trying to follow the slides as well as the speaker because of the two or more different flows of information.

I have more problems with the diagnosis than before it, as its seen as a pre-existing disability for my health insurance so my psych cover has been cancelled so I have no idea why people would want to spend money for a 'fake' one. However, I do have a friend who is shopping their self-dx'd kid around different therapists because he's not meeting the criteria for diagnosis, so there must some benefit to some people.

@claymodels

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.

No, I can't. I'm not sure why you are asking though, I said I can't do this.

The Oh. OK. sounded to me like you thought I was saying something odd. I've always thought people on TV who could listen to something in their ear and carry on talking were quite amazing.

I am not discounting someone's diagnois because they are in the public eye

This is exactly what you did, stop fucking gaslighting! @Sobeyondthehills

You pretty much said people in public eye were jumping on a trendy bandwagon

@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.

Absolutely hit the nail on the head here 👏🏻

Two adult women who were recently diagnosed with autism have shared their stories and explained how it has been the best thing for them and their families. They have admitted how much their lives have been a struggle... yet there are actually some of you who are QUESTIONING the motives and even the diagnosis!!!

I think a lot of people forget that autism, despite what people say these days, is a SPECTRUM neurodiversity. Some have it mildly and can function well though do still struggle (hence the diagnosis). Other autistic people are non-verbal and have other severe issues that go with it.

I am going to get so much hate for this, before anyone starts I have several family members with autism and they all present differently. One of my cousins is non verbal and needs round the clock care, whereas my brother has the old diagnosis of "aspergers" and whilst he struggles socially sometimes, he has a wonderful life and is "high functioning".

But the autism gatekeeping is actually quite harmful. Christine and Mel's diagnoses can only be helpful to everyone. I am sorry that some of you don't feel the same way.

The Oh. OK. sounded to me like you thought I was saying something odd.

Not so much odd as dismissive. I didn't respond last night because you would have got a barrage of fucks, now I have thought about it I realise it's simply not worth my time to explain.

That’s interesting about Melanie Sykes. I watched her on MasterChef recently and recognised some traits and didn’t know she had had this diagnosis. I thought she was awesome on it.

@claymodels

The Oh. OK. sounded to me like you thought I was saying something odd.

Not so much odd as dismissive. I didn't respond last night because you would have got a barrage of fucks, now I have thought about it I realise it's simply not worth my time to explain.

Explain what? I thought it was normal not to be able to listen to one thing while saying something else. It is my experience so obviously I thought it was normal, apart from telling my husband to stop talking if I was on the phone it isn't something I've ever thought to ask anyone about. Similarly my DD was amazed when she read about someone seeing pictures when they closed their eyes. Her experience when she closed her eyes was darkness, my experience was I could picture the things I was thinking about. Until someone told us they had the opposite experience we just accepted our own experience and never questioned it

I don't know why you would see it as dismissive, I was surprised to find out that people seemed to think that NT people would find it normal to be able to listen to one thing while saying another. I'm obviously lacking in that department but I can see pictures with my eyes closed and wiggle my ears so we all have different abilities and I can't even imagine why I'd be dismissive of someone being able to do something I can't. I've never been dismissive of someone who can play the piano, speak a foreign language or do 100 and 1 things I can't, I just knew they could do that.

@ancientgran - I know this isn’t the point of the thread, but I agree with you that it is normal not be able to have a conversation while someone else is talking to you, isn’t it?

I have ADHD so my experience is skewed but I still can’t imagine that this is something others can do (there isn’t anyone neurotypical in my house who I can question about this right now)

Interviewing while someone talks in your ear from the production team… I haven’t really thought about it before but I am assuming that they don’t speak very often at all, or it would be impossible ! Surely they only interrupt if really urgent , or to tell you that you have a couple of seconds left to talk or that you’ve run out of time (making this up based on what I’ve seen in films).

Obviously it was harder for then because of processing being affected by her autism.

I can’t do many things while being observed or spoken to. No-one is allowed to talk to me at home while I am cooking, for example, in case I mess up.

Or when driving, if I am at a very busy roundabout or about to overtake. I need my full concentration.

At work, I cannot type on a document while screen sharing in a meeting - as talking and typing, especially with people watching - is too much, so I write my own notes and type of on my own afterwards.

Some of this may be ADHD related but some might not. As you say, we never really know another’s experience and assume certain things to be ‘normal’.

Thanks InstantHorlicks. There are probably all sorts that we don't realise is surprising to others.

@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

Same for my son, people talking in class was massively distressing for him at school as the competing sounds were just impossible for him to cope with. For me I need other sounds or I can’t concentrate.

My son is certainly not ‘incompetent’. He’s autistic

I think in America they have different levels of autism to show how much a person needs support and how it impacts them ,for me and I accept others won't agree it ,s the way to go,

Autism is not linear, a person can have a high level of need in one respect but low in another. A spectrum of need does not translate to levels.

@CorrBlimeyGG

I think in America they have different levels of autism to show how much a person needs support and how it impacts them ,for me and I accept others won't agree it ,s the way to go,

Autism is not linear, a person can have a high level of need in one respect but low in another. A spectrum of need does not translate to levels.

Some people though cant function in any way though ,my child has severe non verbal autism his needs are high in every area ,I realise some people have spikey profiles ,but for some people they are severely impacted in every way ,there needs to be a way to differentiate a level of need

I believe that BBC is showing a documentary about Paddy and Christine McGuiness and their experience with autism in their family next week. It says it's about their kids, but I'm hoping they'll also talk about her own experience of being on the spectrum, as that would be nice to see.

I am an adult woman who got diagnosed recently. For me, my autism looked like:

• sensory difficulties with textures and noises

• struggling to cope with two types of music playing at the same time, or someone talking over music

• impulse control with money and food. I couldn't live independently, I've been with my husband since I was 17 and he's more of a carer than I'd like to admit.

• being so smart and intuitive but failing a level after a level, degree after degree.

• being repeatedly let go from job after job and not understanding why

• shut downs rather than meltdowns

• being highly verbal, but knowing that the cadence of my speech isn't quite right to fit in.

• not understanding how to make friends. Like how do you go from chatting at the school gate to inviting over for a playdate. Literally a mystery to me.

• struggling to follow storylines on TV and film unless I'm using subtitles.

• being unable to talk on the phone

• struggling with continence, not always recognising when I need to go to the toilet when Im absorbed in something.

• becoming obsessive with fandoms

• flipping between my house being so scruffy I can't have anyone over to being so OCD (literally diagnosed OCD, not rude joking OCD) I can barely leave the house.

• asking the doctor for an autism referral and her refusing because I was too old.

But please.... Tell me more about how my verbal autism detracts from your non verbal kids experience (clue: it doesn't, they've both valid experiences). Tell me how I'm wasting resources (clue: I'm not, I get no help, no benefits, I paid for my referral because of NHS gatekeeping and there's no medication I receive). Tell me how I'm being cool and trendy (clue: I am not fashionable, I have no friends to show off to).

Everyone who's slagged off the two celebrities in question needs to take a long hard look at themselves. You literally see the tip of the ice berg presented, not the hell that is autism underneath, the sel doubt and the spiri crushing.

You see that I cope well in my life as it is, you don't see the limits that are placed on my life.

@Meatshake

I relate to so much of your post. Im not as articulate or able to explain how things affect me because I just get irate - I am slow to process but quick to reply sometimes which usually isn't helpful. Maybe I will work on a standard copy and paste response explaining how my autism affects me for future posts.

@Meatshake I've similarly been with my OH since my late teens and the older I get, the more I realise that I couldn't live independently. It's hard, because sometimes I'd like to think I would manage, but I tried it once out of temporary necessity and I completely failed. I can't easily join or understand conversation if they're between me and more than one person, need subtitles, can't process verbal instructions and struggle to outline my thoughts if they are not written down. People tend to speak over me because they mistake my slower processing speed for ignorance.

Like you, I also struggle with continence, which is embarrassing and a source of anxiety. I've walked around in soiled clothing even as an adult, and especially when younger there wasn't much sympathy for that. I don't leave the house as much now, so it is less of an issue, but I wish it was different.

I can stay away from fandoms for the most part, but I get obsessed with people and it affects my ability to work or keep on top of my basic needs. I'm not really going anywhere with this post, other than identifying with it. Part of me regrets creating this thread, because it devolved into arguments over functioning levels and I just wanted to highlight that I wish there was more media attention that focused on people's difficulties in the workplace. Hope you are ok.

When people say they failed to live independently, what do you mean by that? I'm not sure I understand. What things would you fail to do, and what would happen if you didn't have a partner to rely on?

@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?

Hopefully they highly the fact that autism sits on a spectrum and can affect people in a huge variety of ways and is not a 'one size fits all' diagnosis

[quote Figgit]@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.[/quote]
This. This a million times.

@dabbydeedoo

When people say they failed to live independently, what do you mean by that? I'm not sure I understand. What things would you fail to do, and what would happen if you didn't have a partner to rely on?

If I didn't have a partner to rely on I'd live in squalor and would be in mountains of debt from missed payments on bills and essentials. I cannot consistently feed myself or keep up with laundry or personal hygiene, so the house would become a biohazard. If I had a major shutdown due to overwhelm, I could end up malnourished, or I might end up harming myself out of desperation. Unless you lived with me though, you'd probably be under the impression that I lived a wonderful life.

I'm lucky that I have support from my partner and that I can afford to pay for extra help. Many cannot.

I think most people understand that Autism works on a scale of how much it can affect people and just because someone might have mild autism others don't.