Christine McGuinness 'Unmasking my Autism' - tonight (15 March 2023) 21:00 BBC 1 and on I-player. **TW: Sexual Abuse**

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www.bbc.co.uk/news/uk-64953941

I'm undecided whether to watch this as it sounds quite triggering but thought I would mention it. Christine was diagnosed at the age of 24, after multiple misdiagnoses as a teenager.

I watching it.

She was diagnosed at 33.
It's very triggering, I relate to so much of what she says.

The one thing that stood out to me was how rich privileged people get medical diagnosis and treatment straight away. If you have £££ you can get diagnosed within a week or two - the NHS waiting list for autism in my area is currently 3 years.

So basically a person is clearly struggling enough to be referred for an autism assessment, and they just get put on a waiting list and left for 3 years. They could have killed themselves by then. There’s no other condition where a sufferer would be left awaiting diagnosis for that length of time, it’s shocking. But hey-ho, never mind because the rich can just pay for it, so as long as they’re ok nobody else matters…

@Corah5

I'm not rich but I paid for my assessment. It cost £1200 at the time and it was split into £400/£800 payments over a couple of months. I understand I am very fortunate to have been able to do this but I am by no means rich. I borrowed the money from a relative and paid it back over time. I have just paid for an upcoming ADHD assessment with the bonus money motability gave me when I got my new car last month. We still need to wait for money to go into the bank before we can buy any food this week. I know we don't all have that opportunity let alone the means to just pay for assessment but I think your anger at people who pay is misguided. The NHS is the problem, not the self funders.

Premicrois if you have £1200 to spare you’re well off. Doubly so if you get motability and have a new car.

I’m not angry at the self funders. I’m angry that people who have cash to splash can get diagnosed straight away while everyone else has to wait years. If someone is struggling to the extent that they’ve seen the GP and been referred for autism and mental health, they need help quicker than three years.

Christine discusses in the documentary how seriously debilitating undiagnosed autism can be, and people are just being left to cope with that for another three years after their need for help has been acknowledged. Meanwhile Christine is being patted on the back for coping with her diagnosis which she only had to wait five minutes for.

I was given a diagnosis in 3months.
look into right to choose and pick the service with the least wait time.

Premicrois if you have £1200 to spare you’re well off. Doubly so if you get motability and have a new car.

Did you misread me? We had to borrow the money. I paid it back at £10 a week, I told how I have to wait for my money to go into the bank this week to be able to buy food. That's not well off.

I was awarded enhanced mobility and decided to use it for a car juts a few months ago. Prior to that I got no PIP at all. I'm sure it's only because I am in Scotland and applied for ADP that I was awarded as common sense prevailed. The day I picked up my car I had to go home and park up for 3 days because we could r afford to fuel it.

Don't be coming at me with ridiculous assumptions.

I’m not angry at the self funders. I’m angry that people who have cash to splash can get diagnosed straight away while everyone else has to wait years.

Those people are the self funders. They are still not the people who should be angry at. An autism assessment is avoid for people who have money too. Any anger really should be directed at the cause of the problem for the people who can't pay. It's not rich people.

Couldn't afford

Assessment is VALID

It’s not her fault there is such a long wait. She has had a horrendous time. I’m 54 and don’t begrudge my daughter getting her diagnosis at 17 or anybody else getting it earlier. It’s the fault of gender bias and lack of funding that I’ve waited decades and it’s blighted my life. Anybody paying private is doing us a favour as they’re off waiting lists. My son was put on a priority list and had the wait cut to 6 months because he puts himself in danger. The wait time can get reduced in some circumstances.

I thought the programme was so
so good and she was incredibly brave doing it.

I love Christine McGuinness. I have looked forward to this program for so long. Just seeing her shows and her advocation for Austin’s has given me so much self confidence and feeling like it’s ok to just be myself. She breaks the typical stereotypes of autism and shows you can look and appear to have everything together, yet still be struggling so much internally.

Personally I feel relief and loved her show.

Out of interest has anyone been diagnosed with autism but doesn’t have the sensory issues? I don’t have these and don’t need routine or obsessive interests either. But I meet all the social traits, e.g. not understanding humour, struggling with social situations and stimming.

Out of interest has anyone been diagnosed with autism but doesn’t have the sensory issues? I don’t have these and don’t need routine or obsessive interests either. But I meet all the social traits, e.g. not understanding humour, struggling with social situations and stimming.

I was led to believe these were part of the criteria for diagnosis. It was certainly looked for when my assessment was done (it was the ICD10 used) - maybe the DSM5/ICD11 is different?

I'm on a 6 year waiting list for possible lupus.

But yes the wait times are appalling.

Can anyone share if the documentary is very graphic regarding the child abuse stuff? That's really making me hesitate, although I'm very interested that's just 😬 for me. Too close to home.

She talks about the childhood stuff but it’s only one small part of the program. It’s an emotional watch but nothing graphic. Just conversations with other people.

she goes into lots of other things like eating disorders.

Thanks so much. I'm gonna watch it. Appreciate the response.

Following

I completely agree that it is awful that people have to wait for so long if they can't afford to pay privately - my dd would have almost finished school by the time she got to the top of the NHS waiting list (4 years). We did still have to wait about 6 months though, even though it was a private assessment - the doctor and clinical psychologist who diagnosed my dc have closed their list to new referrals now too. The demand is astronomical - so many people struggling.

I like Christine McGuinness and I thought the programme was good. I think she is making a really helpful contribution - breaking stereotypes and speaking very openly about a lot of things. Good for her. The fact that she received a diagnosis quickly at least means that she is in a position to raise awareness in the way she is doing.

The fact that some people self fund actually reduces the waiting times, or at least that's what should happen. Each self funder means one less person on the NHS waiting list.

Your anger/bitterness on this thread towards people you perceive as being 'rich' because they paid for an assessment is misplaced. The blame lies with the government for underfunding vital services, not just around autism, but for so many other conditions.

I'll piss you off a bit more. I self funded my assessment because I could and because I didn't want to wait for 2 years on the NHS waiting list (as it was back in 2017, now it's even longer). And then, I remained on the NHS waiting list because I could. So essentially, I have a self funded diagnosis AND an NHS diagnosis.

Re: your comment -

There’s no other condition where a sufferer would be left awaiting diagnosis for that length of time, it’s shocking.

**There are loads of conditions that exceed autism assessment times as already demonstrated on this thread and also applicable to my own family members.

The NHS is in crisis. Across the board.

Part of me was shocked at the figures for autistic women being in domestic abuse situations but then it made sense and also mirrored my life experiences.

I'm a bit disappointed that autistic women and girls with high support needs were not included in the programme.

@Gingerkittykat

I feel it was so relatable to see people with “high functioning” ASD as lots of programmes don’t focus on that.

did you see Chris Packham inside my autistic mind, that focused on a mix of people with ASD with a varying spectrum of support needs.

the stats in both shows stated that those with ASD and no leaning disorder ie have high intelligence are more likely to commit suicide.

@Corah5 we put our Dc assessment on a credit card…. We prioritised it over other things and hoped that he would be granted dla. He was and we used 3 months of this to pay it back. And are having to use more to pay for other assessments now too.

Regardless of the DLA we still would have got into debt to fund the assessment as it is important. Cutting back on clothing, food, entertainment etc spends was discussed.

Self funders are largely not rich people… they are people who are practical about the long wait list and who prioritise what needs to be done to get around the problem.

Love Christine McGuinness. It is wonderful what she’s doing. The documentary is quite heavy going as it’s only an hour long and packs hard punches - mental health, suicide, eating disorders, sexual abuse.

I would have liked to have seen it made into a series with more information about masking and seeing the lives of other autistic women playing out day to day. It was really interesting but so compact.

Clearing out the bags of clothes that were bought to mask was very relatable as were multiple pairs of same shoes and shirts in different colour ways!!

How did you all feel after watching it?

Where are you all in your unmasking journey?

I found it really emotional. Christine McGuinness has helped me so much on the way to self acceptance. Weird that someone I’ve never even met can do that.

On social media though, she always seems to be out somewhere doing something with friends. Yet on the show and interviews she says she struggles with friendships. So social media doesn’t really show the real her I don’t think - but then who’s does?!

I struggle daily with social things at work. I’m trying not to care what others think and am in therapy.

Private assessment too expensive, NHS waiting list so long so just accepting a self diagnosis is valid.

@MumofOne1789 are you on nhs waitlist? If not get on it.

While self acceptance is of course very important, getting the diagnosis formally if you can at some point is also very important. It gives you legal protection against discrimination at work, adaptation for you should you ever need to go into hospital or much later a nursing home, entitlement to grants and support, special assistance at airports. Very long list of things that are beneficial to give you protection and comfort.

Agree all this is very emotional. I have preconceived stereotypical ideas about autism and was very against diagnosis in my late teens. When I had my son and saw how much better his life was for having support and more over how amazing he was just as himself. It made me realise there is nothing to be worried about asd. And that life would be better to be diagnosed so I bit the bullet.

The amount of money I have spent on masking is mad and I don’t know if I will ever be able to stop doing it.

No, restricted, repetitive behaviours, a need for same-ness and hyper- or hypo-sensitivity to sensory stimuli is 100% part of the diagnostic criteria. You have to demonstrate that, plus social communication deficits, going back to childhood in order to be autistic.

It doesn't sound like you're autistic but you may have Social Communication Disorder.

From the National Autistic Society: "The DSM-5 now includes a condition called 'social communication disorder', separate to 'autism spectrum disorder'. This diagnosis would be given where someone exhibits social interaction and social communication difficulties but does not show restricted, repetitive patterns of behaviour, interests or activities."