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?

The more broad the range of people talking about theirs (or their family's) experience of autism, the better. Not all people with autism can represent themselves. I remember days after DS was diagnosed and still feeling rather stunned, crying at the radio as Ken Bruce spoke to Jeremy Vine about his non-verbal son Murray who also has apraxia following winning an award for his poetry. It took them years to find a way to communicate.

The whole point of an autism diagnosis is that it is recognising life-long impairments. For DS with an "Aspergers" type profile, seeing sucessful people with an overlap of diagnoses is helpful. They will share the trait of stuggling in one way or another behind the scenes, but for children like DS that struggle tends to be private, although it can occasionally explode out more publically. Society expects him to be "normal" and behave "normally" and that can come at great cost. Those challenges will change and adjust as he grows up.

I'm not going to pretend to know what it's like living with the "low functioning" end of the scale, but having grown up with a very disabled relative (for other reasons) it was visibly clear that they did not function on anything like a "normal" level.

Honest talking about autism and other neurodiverse conditions is generally helpful and positive to help individuals, and wider society improve understanding. Well maybe not so much Elon Musk who thinks you can copy his way and emulate his sucess, but Melanie Sykes has put out a well balanced account of her experience.

@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?

One would hope that it's fairly widely known these days that autism is a spectrum rather than a binary condition.

Just because it takes a long time to get an NHS diagnosis doesn't mean they spend longer diagnosing it, it's the same as if you go for a private operation you get seen and treated quicker.

@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

My parents knew I was "different" at that age too

But autism diagnoses were much harder to come by in those days, particularly in girls who present very differently to boys.

I finally got a diagnosis in my early twenties. That doesn't make my autism any less lifelong or significant

Don't be so offensive.

My friend was told it was 6yr wait ( pre covid) so they wouldn't add to waiting list & other face battles getting a referral.
I don't think private diagnosis is any less valid as will be following same diagnostic tests with psychiatrist/psychologist that may work or have worked in NHS.
It would be viewed different for more physical conditions and people have diagnosed/treated private when overlooked by NHS and has saved lives.
Self diagnosed exists because for many its difficult to impossible to access a diagnosis especially in countries where reliant on health insurance and it's not seen worthwhile given can't be treated with medication. There can also be a long period of waiting to have it confirmed.

What profit is there to be made here?

Errr.....quite a lot, I would think!

I think it's a wonderful thing that they are speaking out. It means parents like myself gain some reassurance and dc can look to successful, well known individuals and it gives them confidence for the future.

The greater the awareness the better. It ultimately makes life easier for all affected. Everyone knows it's a spectrum, it's not taking anything away from those who struggle.

@HousethatChunkbuilt

I'm not saying people get a diagnosis to be trendy. I'm talking about 'self diagnosis' people throwing serious conditions around like confetti. I've got ADHD, I've got OCD, I'm a bit autistic etc. The truth is I would love for my dd not to have ADHD. I love her but the world is going to be hard and I'm fully expecting to be flamed for this but people don't really care. My DB had a psychotic episode and breakdown last year. It he was honest about this on job applications how many calls back do you think he'd get? It's like Be Kind, ultimately it's meaningless.

You said: 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.

What point are you trying to make exactly?

Also neurodiversity and mental illness are two separate things.
Your DB would get the same reaction as someone else who had a chronic health condition. Your DD gets the same reaction as someone in a wheelchair. Not. The. Same.

If even people like you don't get it there's no hope for the general public. You're just reacting with anger

Wow really!? Those of us who have neen thru this with our kids know its not at all easy to get an autism disgnosis. 🙄

And why do you think someome who wasn't neurodiverse would want to!? Read a bit more...

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

This. With bells on.

@EdenFlower

*What profit is there to be made here?*

Errr.....quite a lot, I would think!

There may be profit - but are you actually saying that everyone gets a diagnosis because they paid? Also that the help people receive as a result of their diagnosis that enables them to understand that better - a complete waste of time?

@gogohm I was diagnosed privately. The person who diagnosed me works diagnosing autism in the NHS as their main job.

I know of a person who approached them and after their initial one hour appointment was advised it was unlikely they'd fulfil the diagnostic criteria if they underwent the full assessment. The assessment is the expensive part. I don't think they'd tell people this if they were just after a quick buck.

@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.

I think we could all meet the diagnosis for autism with a bit of knowledge of what to say. Once you have this diagnosis easy to use it to excuse difficult or unacceptable behaviour.

What absolute rubbish.

I am glad that Ms Sykes was assessed properly and didn't self-diagnose.

Also do people really believe that families are paying thousands for assessments because they ‘want a label’ people are absolutely desperate! Desperate to get the right education, desperate to stop their family member harming themselves (or others) desperate to sleep desperate to get their child to eat etc.

Christ have some compassion

She has an autistic son too!

I have been sitting fizzing over the comment that a diagnosis isn't a diagnosis of it has been done privately.

Let me tell you my story (short version)

Had a horrific childhood due to being autistic and no understanding or intervention. Got worse in my teens, started to drink to cope, ended up with an alcohol problem, an eating disorder and still struggling. I was targeted because I was vulnerable but because I had no idea I thought these people 'loved' me. One of them was 62 and he raped me repeatedly for months when I was 16. Nobody was there for me because they all thought I was a the bad apple in the family. Nobody understood me. Everybody thought I was weird, horrible, not right and a bit of an idiot. Every day of my life I put on a face and tried to be normal - and it goes on

Fast forward to my realisation, which by the way came about because knowledge and understanding is much greater nowadays, not because I wasn't autistic when I was 2 like your child, that I was possibly autistic. It took me 5 years to pluck up the courage to go to the GP, because I don't do things like that but I did and he told me I couldn't be autistic and refused to refer me because I had a husband and a job and DC. I then had an absolute breakdown a year or so later and DH convinced me to seek a private assessment because that's what it is by the way, you don't pay for a private diagnosis you pay for an assessment, which may or may not lead to diagnosis. I spent months researching obsessively over who should do this assessment and finally found someone who also worked in the NHS and had been part of the team who developed SIGN 145. I was assessed using exactly the same method that is used by the NHS to diagnose adults and by one of the top people in the country. It was worth every penny, but again I paid for assessment, not a diagnosis - that was the result of the assessment I paid for. You don't just rock up and hand over money for a diagnosis.

Since having the diagnosis I have been able to reframe my life, my experiences, to be more self aware and less harsh. I have stopped doing things to try and prove I am 'normal' and if o need time out I simply take it. Going forward I can protect myself from abusive people and maybe not end up getting repeatedly raped as I now have the understanding that I do very much needed all those years ago.

@claymodels

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?'

@Flapjak

I think we could all meet the diagnosis for autism with a bit of knowledge of what to say. Once you have this diagnosis easy to use it to excuse difficult or unacceptable behaviour.

Don't be so fucking stupid

You don't just have a wee chat and walk out with an ASD diagnosis

This thread is a real fucking eye opener, isn't it

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?'

It gave me everything.

Quoting your friend is not really worth much, we are all different. She doesn't want to be assessed, fine. Lots of us both want and need that, so don't try to take away simply because others are not the same.

@HousethatChunkbuilt isn’t it important to know whether you have PD or are autistic?

Many many women were wrong dx with BD when they were autistic. Leading to the wrong ‘treatment’ for many years.

@Flapjak

Message deleted by MNHQ. Here's a link to our Talk guidelines.

Not true. And a point that relates to @Latenightpharma's concerns about the workplace. There are 3 broad categories of neurodiverse people:

• Mask well/in an environment that suits their needs. Nobody even needs to know they're ND.

• Can perform with adjustments.

This is the biggest category and again a lot of nuance. To what extent are adjustments worth hiring them? Some people just need adjustments like the sort of work given, the way things are said/interpreted. Some need constant supervision and telling what to do such that it becomes a huge element of someone else's work.

• Will never be able to work no matter what adjustments would be put in place.

And the same applies to friendships and social behaviour.
Again DP and his group of friends are all ND. One person who is very rigid, insists on things going his way and tantrums when they don't. As a result nobody wants to play video games with him.

A diagnosis is not a free pass to behave however you like