Simon Baron-Cohen can stuff right off

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Bat Macdui
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Re: Simon Baron-Cohen can stuff right off

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I could write a book on ADHD and addiction. I might just do that, now I can actually sit down and write without I'll just go for fag/check Twitter/poke the cat/rearrange the pen jar/stare into space/develop a sudden and imperative interest in the migration cycles of jays. :))

There's a movement in the US, which should make it to the UK, around running the basic screening for ADHD on anyone who rocks up to addiction services. This is a bloody brilliant plan. I am going to write to Jo Platt about it (local MP who is doing loads on ADHD services in the NHS).

BUT. What I mostly want to do is reassure you that the substance abuse bit is massively mitigated by knowing, understanding and medication. I'd only been on the lowest dose for a week when a lot of things clicked into place about the why of drinking for me. Obviously, it's nuanced, and everyone's different, and I'm also autistic and was undiagnosed for years etc etc. But there are two major, major factors about the medication. The first is that I can get past the impulsivity. I get the impulses and the distraction, on medication, but it's an absolute piece of piss to just skate past them. I'll be sat there, trying to do something and my brain will be like 'DULL LET'S FIND FUN NOW NOW NOW' but then it just slides away, as opposed to before medication, when I would just HAVE to act on that impulse. And the other thing is I don't need my mind to shut up. I have always needed my mind to shut up. It never fucking does. It's fucking ceaseless. I think in massive, conceptual visuals all the time. Sometimes they're so fast, they're fragmented, they never get to a point, they're just endless bang bang bang bang bang of stuff. On medication, I can think in sentences. And then, because I can think in sentences, I can get cause and effect. And I can get to my feelings and the why of my feelings withing hours instead of in days or never. So, so many of the stories I have read around autism and ADHD and addiction revolve so wholly around being undiagnosed and self medicating. So you know, you're way past even halfway there and doing such a fantastic job. :love2:
Loralei
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Re: Simon Baron-Cohen can stuff right off

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olive wrote: Sat Sep 28, 2019 12:44 am I love this topic and can listen and read about it for hours so even if no one else is, I am reading obsessively.
Me too!
olive wrote: Sat Sep 28, 2019 12:44 amI agree that you are utterly fucking amazing
Me too!

I met with Bert's teacher and the SENCO on Wednesday. They said it had come completely out of left field for them, and she definitely wasn't one of the children on their radar for needing additional help, but they listened and took my concerns seriously and said that the behaviour I was describing at home fits with ASD and/or sensory processing disorder. The SENCO gave me a questionnaire to complete to kick off the assessment process but said the first step is to see a SALT, and she expects Bert to be batted back as her communication skills are so good, but if so we ask again and if we get the same response I can approach my GP. I'm a bit confused by the process but she has said she'll help us through it so I'm just focussing on the next step. (We do have private health cover via my work, so that's an option if it becomes too painful for B.)

I liked the fact that the second question on the questionnaire was "What are your child's strengths?" (the first asking about my concerns), which gave me hope that the process will see B as a person in the middle of this.

The school have said they will use the techniques they apply for other children with similar needs regardless of the diagnosis, so her teacher will make sure his instructions aren't ambiguous and he suggested he can tell B how much writing he expects as a minimum, for example, instead of leaving her nervous about whether she's met expectations. They already use visual timetables but they've said they'll make sure not to spring surprises on her and watch for her getting overwhelmed. She came home on Thursday and told me Mr C had taken her aside and told her she can always go to him if she's worried about anything at all, and she seems really happy that the important people are trying their best for her.

Obviously it's not all sunshine and roses. Her behaviour at home is at one extreme or the other. She slept on a mattress in our room last night (as she offered BroPo her bed), which was fine, even with P and I both snoring :)) but as soon as TD came in at 5.30 she flipped her lid, screaming and shouting that he breathed too loudly (irony!) and threatening to punch him in the face. She was too far gone to reason with so we ignored her; she took her book to the bathroom for an hour and then came and asked P for a cuddle. I spoke to her later and she did apologise to TD properly but there was just no calming her in the moment.
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Re: Simon Baron-Cohen can stuff right off

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Loralei wrote: Sat Sep 28, 2019 7:54 pm
The school have said they will use the techniques they apply for other children with similar needs regardless of the diagnosis, so her teacher will make sure his instructions aren't ambiguous and he suggested he can tell B how much writing he expects as a minimum, for example, instead of leaving her nervous about whether she's met expectations. They already use visual timetables but they've said they'll make sure not to spring surprises on her and watch for her getting overwhelmed. She came home on Thursday and told me Mr C had taken her aside and told her she can always go to him if she's worried about anything at all, and she seems really happy that the important people are trying their best for her.
This is so positive! Hopefully by getting support in now B will learn some techniques to help her cope in the moment. I’ve no doubt how hard it is for you but it must be so upsetting for her. :(
Bat Macdui wrote: Sat Sep 28, 2019 7:48 am
There's a movement in the US, which should make it to the UK, around running the basic screening for ADHD on anyone who rocks up to addiction services. This is a bloody brilliant plan. I am going to write to Jo Platt about it (local MP who is doing loads on ADHD services in the NHS).
This would be incredible. The more I’m reading about this the more I’m shocked that the link hasn’t been made sooner.

Your post is really reassuring so thank you! :love2: We’re on day 4 of medication and T isn’t really giving too much away at the moment and I don’t want to keep prodding him. He had a big weekend of football/ late nights/ more sugar than usual so it was hard to gauge the impact. But! Yesterday he came home from school and did his homework in 20 minutes without jumping off from his chair, staring out the window, becoming engrossed in his pencil etc. Usually it takes him an hour to produce the same amount. He’s still going too fast, not checking his work but hopefully these things will start to stick.

Appetite seems about the same so far as does sleep. He came off melatonin a few weeks ago and I suspect he’ll have to go back on but we’ll see how we go.

I also bought him a journal to write about how he’s feeling :Ernest: and am trying to get him to write a line or two, good or bad about his day and a mindfulness colouring book for bedtime. He isn’t fully on board with either of these as yet. :)) Well apart from writing about the two goals he scored on Saturday which wasn’t the heartfelt, introspective outpourings I was going for.
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Re: Simon Baron-Cohen can stuff right off

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:lol: It's a start!

The homework (as a measure of concentration) sounds brilliant, Olive. I hope things are, and continue to get easier for him.
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Bat Macdui
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Re: Simon Baron-Cohen can stuff right off

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olive wrote: Tue Oct 01, 2019 4:45 pm I also bought him a journal to write about how he’s feeling :Ernest: and am trying to get him to write a line or two, good or bad about his day and a mindfulness colouring book for bedtime. He isn’t fully on board with either of these as yet. :)) Well apart from writing about the two goals he scored on Saturday which wasn’t the heartfelt, introspective outpourings I was going for.
:lol: :love2: To be fair, I'm an adult, I write for a living, I've practised insight into my psychological state/wellbeing and all I managed on the first day of my meds diary was 'arms feel a bit weird'. :lol:

That does sound really positive, though. A lot of the positives/calmness/focus is only recognisable after the fact. And probably harder to recognise if you've not spent years internally examining yourself.
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Bat Macdui
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Re: Simon Baron-Cohen can stuff right off

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ALTHOUGH. There is a massive, massive, massive negative to the medication and that's that more than one cup of coffee a day (even decaff!!) gives me a proper horrid headache.

The loss is heartbreaking. I am devastated. I am going to have to spend the rest of my life on vanilla tea and hot vimto. It's so shit. :verm:
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Re: Simon Baron-Cohen can stuff right off

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I've just been told I have a diagnostic appt next Friday. No fucking idea how I feel about this yet.
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Re: Simon Baron-Cohen can stuff right off

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It is totally permissible and right to be a bit batshit for the period of time beforehand and at least a year afterwards. :yes: Best of luck, lovely.
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Re: Simon Baron-Cohen can stuff right off

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Smunder Woman wrote: Fri Oct 04, 2019 12:03 pm I've just been told I have a diagnostic appt next Friday. No fucking idea how I feel about this yet.
Is that because you have alexithymia* or do you feel weird about it?

I think I would be quite freaked out by it.


*look at me! Using my new word!
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Re: Simon Baron-Cohen can stuff right off

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I have no idea. Maybe both? :))

I am glad it's short notice though, as I really don't need time to wind myself up about it. If I get really overwhelmed and cry and can't make eye contact, it'll only help though really :mog:
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Re: Simon Baron-Cohen can stuff right off

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Hope it goes well, Smunder. I would totes work myself up.
Bat Macdui wrote: Wed Oct 02, 2019 12:41 pm I've practised insight into my psychological state/wellbeing and all I managed on the first day of my meds diary was 'arms feel a bit weird'. :lol:
:lol:

T had the mother of all meltdowns yesterday. I don’t know if it was just over tiredness or a meds related comedown.
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Re: Simon Baron-Cohen can stuff right off

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Are you going it alone, Smun? I did my sister and R for one and just my sister for another but it'd be fine alone. My sister was vaguely handy for 'things in childhood' but mostly it was just me wittering.

Olive, I get this thing on meds day evenings where I don't quite know what to do with myself. In that I'm tired, but my brain isn't going a million miles an hour and I don't know if I am too tired to manage a usual activity, like reading or whatever or if I'm just relaxed (unexpectedly, because I am not used to ever feeling relaxed) and it's really disorientating.

Also, bear with me, here follows a massive bit of theorising, but there's a point to it, promise. :yes:

The more I read and understand from autism/ADHD theory and papers and from people with one or both, the more I think that the overlap between all of the things that come under the neurodiversity umbrella is huge and smudgy and there's no real way to separate them. So, autism, ADHD, dyslexia, dyspraxia, dyscalcula, sensory processing disorder, social and communication disorder, etc. I know so many people with ADHD who recognise in themselves that they have autism traits and are all 'well, it's not enough to be be diagnosed' and same with autistic people 'my executive function is screwy, but probably not enough for an ADHD diagnosis'. And it is widely recognised now that the learning difficulties go with ADHD and autism frequently. And you come back to that thing I've talked about before. Definitions and diagnostic criteria for all of them are based on what is visible on the outside and how that has been interpreted by a series of clincians and academics, some of whom may be looking to prove their own theories rather than observing independently (insert Simon Baron Cohen is a massive twat reference here). Crucially, they've not been looking at all closely what is experienced by the person with the diagnosis.

I really think the best way to head in some utopian future is for a much more over arching diagnosis type thing, where if you present with traits related to things under the neurodiversity umbrella, then someone/some people look at what those traits and which are significant enough to have an impact on day to day life. So instead of coming out with 'you're autistic and have ADHD with a touch of dyspraxia' you come out with a 'yep, neurodiverse, needs help with some things, here's a plan that includes meds for ADHD executive function, required school/work support for learning difficulties and personalised solutions around dealing with social and communication differences'.

I think the current way of doing diagnosis is limiting and also means that people just don't get a full understanding of themselves because they think 'oh, well, I have an ADHD diagnosis, so I won't have social problems, like an autistic person'. Or 'I have an autism diagnosis, which states I might be clumsy and have crap motor control, and have executive function issues, but it means I probably don't have actual ADHD or dyspraxia'. Which can then lead to an incomplete picture and not enough help with everything that is a struggle.

And all of these things have proven links to sensory processing disorder, which is the bit of autism that people recognise as not coping with noise, not coping with smells, not coping with bright lights, not coping with itchy labels in clothes, not coping with heat/cold, not coping with too much information input. The ADHD diagnosis does recognise noise processing problems, but none of the other issues. The learning difficulties ones don't even mention sensory processing.

ANYWAY. The point I was getting to in my usual long winded way, is that T might have traits that fall under other diagnoses, and might not be able to articulate that to you. And if he's having meltdowns, are these related to the ADHD and the meds (highly possible) or are they related to the kind of Too Much Information meltdowns usually more associated with autism and sensory processing disorder? The sound/hearing thing being more closely associated with ADHD means he might be quite likely to be a bit like me, where when it's all a bit too much, just talking to R whilst the washing machine is going in another room feels a bit like I am under assault from 8 toddlers doing fire engine impressions next to me and a brass band tuning up on the other side. :)) Or in the office with a couple of conversations going on round me, plus phones ringing, plus something outside with it's reversing beep on can make me want to get under the desk and go foetal. :))

Which is an even more long winded way of saying, maybe get him some headphones or ear defenders? :))
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Re: Simon Baron-Cohen can stuff right off

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Yeah, I'll probably be on my own. My friend will come if she's off work, but there's nobody here who's known me since I was a child anyway. Sorry, I feel I should be trying to help other people on this thread but I'm massively overwhelmed today. Look at me identifying an emotion :))
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Re: Simon Baron-Cohen can stuff right off

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FFS mate I didn't tell anyone on here until nearly a year after I'd been diagnosed, never mind try and shre any sort of great worldly wisdom. :)) I think I only told Ruby at the time. "You'll never believe it! I'm officially autistic" Her: "THAT IS SUCH A SHOCK". :))

Seriously though, try not to overthink yourself about it this week. It's so hard when you've been masking for so long *and* you're preprogrammed to try and plan and rehearse everything to have an idea of how to be at an autism assessment. Just be Smun. :love2:
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I think I'm mostly dreading the level of peopling involved :)) I've had a wee cry about it this morning which helped. I've told everyone, I can't keep things to myself :lol:
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Re: Simon Baron-Cohen can stuff right off

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I'm the Povv of late autism diagnosis. :)) I never tell anyone anything important until way it's happened.

Is Penne being lovely and helping? Tell him I'll send Shoe round if he's not.
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I'm on standby. 🔪
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Re: Simon Baron-Cohen can stuff right off

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I’m glad the cry helped, Smunder. I’m pretty sure I’d be compulsively splurging everywhere if I were in your shoes.
Bat Macdui wrote: Sat Oct 05, 2019 6:31 am
I really think the best way to head in some utopian future is for a much more over arching diagnosis type thing, where if you present with traits related to things under the neurodiversity umbrella, then someone/some people look at what those traits and which are significant enough to have an impact on day to day life. So instead of coming out with 'you're autistic and have ADHD with a touch of dyspraxia' you come out with a 'yep, neurodiverse, needs help with some things, here's a plan that includes meds for ADHD executive function, required school/work support for learning difficulties and personalised solutions around dealing with social and communication differences'.
I totally agree with this. I did a few online test type things about T to see whether he may also be autistic and whilst he doesn’t appear to have many of the flags there are definitely a couple of sensory things that we can be more mindful of.

T’s meltdown was a complete spiral of negativity. He’s crap at school, no one likes him, he’s rubbish at football and can’t do stuff kids his age can etc. If he were an adult I would have described his behaviour as paranoid. I managed to get him to write it out in his journal so we at least have a record of it. He was fine yesterday - a bit grumpy in the morning but mostly fine and again fine today but then again he’s been playing football all day which he loves.

Admittedly he’s had a big week at school; a big project to hand in, his first class presentation and a big test on Friday plus all his usual activities. I think it was easier when he lived in his own world and didn’t care about homework/ grades/ social dynamics etc. I’d pull him out of football to give him more down time but he loves it so much and is one of the things he’s naturally and instinctively good at without working hard. I feel like it’s important for his confidence. I hate making all these decisions and forever feel like I’m making the wrong one.
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Re: Simon Baron-Cohen can stuff right off

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Penne is being great. He's like, it's shit, it hurts, it's a lot and it's ok to be overwhelmed, but ultimately I am me. And he gave me an excellent neck massage :))

Olive, I meltdown about stuff like that all the time. I think the fact you are actively trying to help is the main thing. You won't always get it right first time, but you're interested and supporting him, which is a lot in itself.
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Re: Simon Baron-Cohen can stuff right off

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Long wind away, bats. It’s really interesting.

I’ve suspected sensory something with S for quite a while so it’s interesting to reference it all under an umbrella. The way the psychologist explained it to him was that his brain needs to learn a different way (specifically about the dyslexia) which I thought was a good way to put it.
Half-ten?! Half-ten?! I've never been up at half-ten! What happens?
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