Paddy And Christine McGuinness: Our Family And Autism

[discoland]

Did anyone watch this last night?
I have an autistic DS age 5 so found it really interesting to get an insight into other families and individuals with autism, really liked it.

The conversation about girls masking and finding ways to present but anxiety builds as a result is so spot on 😢

My reflections on it;
They can’t cover everything in a short episode, they attempted to give a pathway from diagnosis
The feelings that this can evoke as a parent
The concerns that you may have as a parent
They covered myths around vaccination being a cause and looked at genetic links
Different presentations in girls and masking
They attempted to cover some of the scope of the presentations looking at differing severities
They attempted to raise awareness of some issues regarding education giving examples of how this can be completed more successfully.

I think it’s a tall order to cover much more in an hour and in much more depth. It has provoked conversation which is positive. There’s loads more that could have been done and should be done but I think it reflects some of the themes on SEN chat here. If a few friends of parents with children with autism watch it and understand a little more about the presentations and concerns and feelings this can evoke than that is positive in my mind…

[quote Wellarentyouacleverdick]@CoffeeWithCheese Yes! I thought the same on the questionnaire!

Museum or Theatre? I like them both depending on what is there to see and how many people there are or aren't! Stupid question. [/quote]
I like a nice old fashioned theatre where you can have a box. That always seems a real luxury to me.

I don't think it showed anything new

But i think it was good that it was a programme showing his struggles about it. i'm guessing there will be parents out there who have trouble coming to terms with it themselves and so i think it's a good thing that it's not hidden and people are more honest.

I thought they'd know more about autism to start with though? i mean i'm surprised at how little they seemed to know at the start of their journey

At one point it said if people out and about saw a child stimming they'd think what's going on?
surely most people recognise stimming as a sign of autisum nowadays?

I would also have liked to know more about how autism affects their children. Yes it said a bit but hardly anything

@Getthefireon

I found it really interesting, especially the part about Christine and when she said she masks so much in front of Paddy and he probably wouldn’t recognise or understand the person she is when she’s sat on her own. Did anyone understand what she meant by that? I thought she was great, very calm and practical. I love Paddy M and actually felt sorry for him as he’s clearly struggled with it all and made some mistakes along the way, who are we to judge? we’re all human. He comes across as a decent person and yes they’re fortunate to have money to help them, but it doesn’t mean their life is without huge problems.

I agree with this about Paddy i thought it was brilliant he was so honest cos not everyone is and it always helps someone else. And to me, this was what this programme was about not about autism per se, but about perhaps helping other parents who might be having trouble accepting it or dealing with it

I really enjoyed it. I thought it did well in showing that Autism is not always visible to other people and that masking exists for many. I think when a lot (possibly most) Neurotypical people think of Autism, they think of what was previously referred to as 'low functioning', and I feel this programme did well to explain there's much more to it

Do they?
Surely most people nowadays know than that about autism...

Not in my experience, I'm always getting told that no one would 'guess' that I'm Autistic

I do think that a lot of people might not realise that many people are autistic if they're not told for example (and i guess depending on how well they actually know the person) but i think that most people know that there's more to autism than 'low functioning'

@kingsleysbootlicker

Not in my experience, I'm always getting told that no one would 'guess' that I'm Autistic

Same!

'But you're fine! You're normal!'

Yes. Autistic people are normal. I'm also really good at hiding my own discomfort so as not to inconvenience, freak out or disturb other people.

@Teenagetrouble

In real life an adult diagnosis wouldn’t just be done by a questionnaire - there would be a full life history taken and also family would be interviewed as well. They sort of alluded to this when Christine was talking with Baron-Cohen but it wasn’t at all clear and someone new to autism might think you just complete a survey like a magazine quiz.

I wondered whether she had had assessments after her chat with BC? If not it belittles the diagnosis as like you said people may assume we are diagnosed because of some quiz?

@Wellarentyouacleverdick

My parents and close family, not so exhausting. My close friends, quite tiring after a prolonged period (few hours). Socialising with DHs friends and their wives, an evening of that wipes me out the next day. Going to a wedding/all day event/being with people I don't know for long periods/ attending meetings where I need to have my full game face on - honestly it takes me a few quiet days at home to recover from. I don't need to take to my bed for days or anything, but I can feel the effects. I am drained, my executive functioning goes to shit, I'm snappy and short, I'm much more sensitive to noise and sensory input, I'm clumsy, I'm forgetful.

Agree with all of this. I can't bare going out as I know I'll not have time alone to "recover"

@RevolvingPivot Honestly an invitation to a wedding or big party makes my heart sink. I make the effort to go to most of them because DH wants to and considers it nice for us to have time out together as a couple (we have small children so we don't get out a lot).

But I have got a lot more choosy. If it's something that I really don't want to go to now I say no and DH goes on his own.

As for doing couple things with DH I am totally not opposed to that. We had a tough time a while back (pre-diagnosis) because he would try to organise 'nice' things for us to do and I just wouldn't want to and he took that to mean that I didn't want to spend adult time with him. Now we know and our understanding is better he realises that actually a night away in a city with a bunch of friends where we go for a meal, drinks and then to a bar, or even just the two of us but something where we need to get a busy train, then go to a loud and crowded venue (like a concert or comedy show) and a packed train home again is not something I consider a nice time.

A night where the two of us go away to a hotel, have a lovely meal, have a wander around wherever we're staying and maybe go for some quiet drinks, lovely. An evening at the local small theatre that we can easily drive to and from and watch a comedy show, great.

I also now plan more, if we have any 'event' coming I try to make sure I have time either side to prepare and recover. Doesn't always happen, but we try.

I thought it wasn't as bad as I had anticipated after reading some of the comments here. I thought it was helpful in raising awareness.

@Hmumoftw0

One thing that really got me was the 2 women that came round one was a paediatrician and the other I can't remember but I found it amazing how much they focused on masking!!! Masking doesn't even exist in most NHS paediatricians vocabulary.

Is there any reason why not? I think it's a great pity that there is not more knowledge of masking. So many children lose out because they naturally tend to mask in school, leading to the school insisting they are absolutely fine and any problems at home must be parenting problems.

I love that they maintained the childre'n's privacy but it made for an incredibly boring documentary, in my opinion. If you don't want your family on tv, don't try and make a tv programme about your family.

I'm a few minutes into the programme on catchup.... I was expecting to instantly connect with Christine and her struggles... Yet all I can think about is that Paddy comes accross as being Autistic... The way he speaks, his tone, almost stuttering, eye movement.... I've not managed to move past that yet....
I think probably because we have suspected Autism with one of our children and we have gone round in circles thinking it was genetically from his Dad.. But then I read up on it and felt like I could relate so started thinking perhaps it was actually me...
So now whilst watching this I'm wondering if it's similar... Christine has related to certain traits and put 2 and 2 together whilst Paddy is in denial?
Interested to see how I feel after watching a few more episodes!