Viewing 40 posts - 1 through 40 (of 53 total)
  • Paddy McGuinnes- autism programme on BBC1
  • Premier Icon MoreCashThanDash
    Full Member

    I’m not his greatest fan, but this is fascinating watching. Very honest and open about the issues, and a really good piece chatting to Paul Scholes about his son.

    Premier Icon redthunder
    Free Member

    Ditto.

    Premier Icon PMK2060
    Free Member

    Agreed. I think Paddy’s wife also comes across well.

    Premier Icon MoreCashThanDash
    Full Member

    The genetic theory was interesting, though I can see why it’s controversial.

    Not something I have any family involvement with, beyond a cousin who was diagnosed at 18, but he’s at the “eccentric genius” end of the scale, statistics being his thing. Our Scout group has quite a few kids with a diagnosis who we provide extra support for where necessary, and watching what some of them have achieved is really satisfying.

    Premier Icon sharkbait
    Free Member

    Very good programbh both of them seemed very open and honest.
    That’s twice he’s spoilt my long-held view that he’s a prat.
    Think I’m going to change my view.

    Premier Icon MoreCashThanDash
    Full Member

    Very good programbh both of them seemed very open and honest.
    That’s twice he’s spoilt my long-held view that he’s a prat.
    Think I’m going to change my view.

    Aye, pretty obvious there is a “real” Paddy and a “celeb” Paddy. Still not sure which one is on QoS

    Premier Icon grum
    Free Member

    I will give this a watch. We have a lot of neurodiversity in our family and I’ve discovered aged 41 that I’ve almost certainly got autistic spectrum conditions mostly leaning towards ADD/ADHD. It’s scary how accurately a list of adult ADD symptoms describes me. Waiting on the diagnosis process at the moment.

    I used to think both ME and ADD were largely nonsense in my more ignorant/less compassionate younger years, serves me right as now I have both!

    Premier Icon thepurist
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    I saw that last night and some aspects of it resonated strongly with me, so I found an AQ test online and scored 42. (MrsP scored 9 and was not surprised at my result). Even allowing for some marginal answers that’s still a fair way on the high side, but at 56 years old I’ve more or less accepted who/how I am so is there any point in taking it further?

    Premier Icon Sandwich
    Full Member

    It’s noticeable that he’s changed on Top Gear more than one would expect for a team gelling. Looks like the autism programme has shifted his approach to life as his understanding and acceptance has improved. He’s making a good job of the hand he’s been dealt.

    Premier Icon grum
    Free Member

    I’ve more or less accepted who/how I am so is there any point in taking it further?

    Very personal choice I would say. If it’s not presenting you major problems in work/life/relationships etc then maybe not but probs worth at least talking to your doctor IMO.

    For me it’s more ADD which is potentially very effectively treated by medication but I don’t think the same applies for autism so perhaps less point pursuing an official diagnosis? This is just my inexpert opinion obvs.

    Premier Icon redthunder
    Free Member

    @thepureist

    Do you have a link to the test you used?

    RT

    Premier Icon thepurist
    Full Member

    @RT

    This is the one I did – have looked at others since and the questions & scoring are consistent.

    https://embrace-autism.com/autism-spectrum-quotient/

    Premier Icon lunge
    Full Member

    Really enjoyed it, Paddy came across really well I thought.

    Premier Icon redthunder
    Free Member

    @thepurist
    Thanks. I have done a couple the same as you. The questions are the same mostly.

    I’m getting this… answers a few questions. Raised more.

    I think, I’m quite good at hiding traits. Explains a lot of school problems back in the 70’s.

    aq test

    Premier Icon chakaping
    Free Member

    but at 56 years old I’ve more or less accepted who/how I am so is there any point in taking it further?

    If you feel it would help further with self-knowledge or self-acceptance, then maybe.

    Also if it has been or is likely to become an issue with work, it may be useful. It’s covered by the Equality Act and employers must make reasonable adjustments.

    Premier Icon sirromj
    Full Member

    Yes was interesting.

    The thing about mimicking behaviour… Maybe I used to do that… sometimes find I do it unconsciously. Took the AQ test. A good proportion of the answers I wanted to answer as “sometimes” so never feel that confident in the result. But the result was very similar to the last time I took it I believe, borderline, 31.

    Our children are too young to be diagnosed yet, but they could be similar result I expect or one might be higher. Guessing/suspecting.

    Premier Icon Cougar
    Full Member

    33 here.

    Somewhat ironically, I found some of the questions hard to answer. Like “I find it hard to do a thing” when I’ve never tried to do that thing so I don’t know whether I’d find it hard or not.

    Also, there’s revisions to the test which I didn’t notice until after I’d completed it. (Why not just update the bloody web page?)

    Premier Icon Cougar
    Full Member

    … 35 with the updates.

    Premier Icon MoreCashThanDash
    Full Member

    I used to think both ME and ADD were largely nonsense in my more ignorant/less compassionate younger years, serves me right as now I have both!

    Probably guilty of this in the past too, but I’ve learnt a lot in the last 10 years.

    Have to say, some of his wife’s comments resonated with me about feeling different and interacting with people differently, and her comments about it affecting her relationship with food but it not being an eating disorder made me instantly think of my eldest.

    I may do the test later on….

    Premier Icon metalheart
    Free Member

    Hmm, that test results ^^^ seem a little, well, perhaps they are trying to sell you something vibe about them…

    As far as I understand it rather Baron-Cohen AQ scores interpretation are as follows:

    0-10 = you have a low number of autistic traits.

    11-22 = you have a average number of autistic traits (most men score about 17 and most women score about 15).

    23-32 = you have an above average number of autistic traits.

    33-50 = you have a very high number of autistic traits (most people with an autism spectrum condition score about 35).

    And the rider that a high score is only an indication (not that you actually are…).

    From memory my score was either 34 or 36.

    I have discussed a diagnosis with my doctor (briefly) but there is insufficient mental health resource at present and when things are back up and running there’s an 18 month waiting list (apparently).

    I’d like to go for a diagnosis (for a personal perspective; ie am I autistic or just weird) but would find it difficult to use a limited resource on something that wouldn’t significantly change my life (when there are others where MH treatment might have a more tangible outcome).

    If there was a private way of undergoing the process I’d consider that though…

    Premier Icon chakaping
    Free Member

    I have discussed a diagnosis with my doctor (briefly) but there is insufficient mental health resource at present

    It’s not a MH condition – though there are typically long waits for diagnosis (my experience is with children FWIW).

    If there was a private way of undergoing the process

    You can get a private diagnosis, the Autism.org.uk website has a handy directory..
    https://www.autism.org.uk/directory

    Premier Icon barrysh1tpeas
    Full Member

    Yes caught a bit of the program, resonated with us.

    I did that test ^. Scored 32, but I’m pretty sure I am to some extent anyway. Always felt like I did’t quite fit most settings, but I do mask well I think, and have a large circle of friends etc. Not really convinced by those tests though.

    My daughter almost certain is autistic, and after a long long wait, she finally has her proper AQ assessment next week at the hospital. But we’re only doing it so she can get the support she might need, that wasn’t available when we were young. She’s bloody brilliant, very clever and creative.

    Premier Icon MoreCashThanDash
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    My natural suspicion was that tests pushed by support organisations may be a little skewed, but I’m just cynical.

    Curiosity got the better of me, Wikipedia says that Prof Baron Cohen is Borats cousin.

    Premier Icon paino
    Full Member

    Our kids are a similar age to Paddy & Christine’s. Our 9 year old daughter has had struggles from day 1, with some quite severe anxiety disorder. It’s heartbreaking. This morning she screamed for an hour all because her leggings were uncomfortable. She can be late for school a couple of times a week. At school she comes across as a different person, she maintains healthy friendships and the teachers barely know her struggles because she masks so well. She’s knackered when she gets home.
    We watched the documentary together and my partner and I related to everything Paddy & Christine said. Very brave of them to come across so openly.

    Premier Icon Kit
    Free Member

    grum, same age here and going through the same thing. My therapist 10 years ago was convinced I had ADHD, so I arranged an assessment with an NHS consultant. I didn’t get a diagnosis. Talking with an ADHD friend recently convinced me that I have it (so many shared personality traits and relatable issues), so I tried again via the NHS and this time they wouldn’t even see me. It’s apparently very hard to get a diagnosis via the NHS, so I’ll eventually (procrastinate much lol) go private and see if I can get one.

    BTW, I believe the term ‘Adult ADD’ isn’t really used any more; since it’s a brain development disorder, you’ll have had it all your life so it’s not an ‘adult’ condition. ADHD is the catch-all term, including being non-hyperactive (my experience).

    Premier Icon barrysh1tpeas
    Full Member

    @paino that all sounds very familiar to us.

    Daughter has major sensory issues, huge meltdowns, always a massive issue getting he ready. She can’t touch things with her hands like towels etc.

    At school she really does amazing considering, getting great results, but is exhausted by the masking.

    We’ve battled for years to get through the system to get her support and get diagnosis. It started when she was 4/5 years old, she’s 12 now. Only just earlier this year did we get an EHCP, so now the school actually take it seriously.

    I would definitely push for an EHCP.

    But everything you’ve said matches with our experiences.

    We have learned difference approaches to help her, we spend a lot of time finding clothes that she’s happy with, and adjusting routines/allocating much more time to things so there’s no presssure on her to get get ready.

    Premier Icon unfitgeezer
    Free Member

    Very brave of them to come across so openly.

    Not that it matters but Im pretty sure he would have been paid.

    Yes it was a good program on many levels, firstly getting Autism out in the open and not some taboo subject.

    My only gripe and I feel more than justified to have this opinion as a father to two boys with Autism and Adhd (12/14yrs) – in the real world try getting an appointment with CAMHS to be diagnosed or if you’re really unlucky the school senco dept to actually help.
    We have been lucky with both of our boys getting diagnosed, one has an EHCP the other not, his school refuses to support one, which causes us all a number of issues. We have now gone legal on the school which doesn’t come cheap and causes many different levels of stress and anxiety for all of us.

    Money or who you are should never come into getting a diagnosis or the help required…

    Premier Icon paino
    Full Member

    @barrysh1tpeas

    It’s a difficult process when our daughter hides it so well. Essentially the NHS have deemed her ‘not severe enough’. Leaves us with no choice but to go private for a diagnosis. The school have been brilliant though. I do struggle with the ‘nip it in the bud’ view as her issue won’t go away, but instead needs managing carefully. Above all it’s her self esteem that I feel most strongly about.

    Her circle of friends/parents also know of her masking, and they’re also amazing. Her best friend has got diabetes and did a presentation at school. We’re putting together something similar for my daughter to do so her classmates can distinguish between the physical attributes of diabetes and the less obvious traits of a person with an anxiety disorder.

    Our daughters sound similar. The sensory issues she’s had have cost us thousands on pants alone!

    Premier Icon barrysh1tpeas
    Full Member

    @paino yes they sound similar indeed.

    And no, it certainly cannot be nipped in the bud. They’re just different. They should not have to change..

    We talk quite frankly with her about it. It’s absolutley fine to be different. We give her all the support she needs whilst we’re with her, and really try and make her feel good about herself and build self confidence depite the difficulties. I’m quite certain she’ll excel beyond her normal class mates academically.

    But it does dominate everyday life for us, it’s the first thing you consider is most situations. We were looking to move house 2019, and ended up moving to a different town to be closer to her beloved Grandma, for the extra support and comfort she gets from that. That left me with a 30 mile each way commute! But anything I can do for them to make it easier is all worth it!

    And yes, a small fortune in pants!

    Premier Icon tomparkin
    Full Member

    @paino @barrysh1tpeas

    I haven’t watched the TV show in question (yet, my Mrs was watching it when I got back from a night ride last night) but I just wanted to say “me too” in reference to your experiences with your kids.

    My middle daughter has sensory processing issues and seems to exhibit a number of autistic spectrum behaviors (I’m not sure if this is the right terminology so forgive me if I’m phrasing it poorly). Reading up online I think she fits well with Pathological Demand Avoidance (PDA) clustering of symptoms, but we don’t have any kind of diagnosis. We’re currently on a waiting list to get on a waiting list for diagnosis, having been bounced around between GP, school, pediatrician, etc, for a few years.

    We’re sort of lucky in that my daughter is just six, so still at primary school where support generally is quite good. She had a week off ill before autumn half term and hasn’t been back since finding any clothes now intolerable (she wears pants and a blanket at home currently). That seems to have kicked us onto some kind of emergency list at school so the SENCO has been ramping up focus on us, and to be fair to her seems to be doing a good job. She is currently working on putting together the EHCP application so fingers crossed there.

    It’s such a difficult issue to really explain: even our close family will say things like “Oh, can’t you just get her dressed?” or “Well, she can do it if she wants to” when she’s managed after many hours and immense efforts on all fronts to put on sufficient clothing to e.g. go to her sister’s birthday party.

    As things stand right now she’s not been outside much to speak of in about six weeks, and her world has shrunk immensely. And of course that has a knock-on effect on us as a family: there always has to be an adult at home, no chance of doing family outings. We do our best to work around it since we have two other girls who sometimes miss out through no fault of their own, but it’s hard work.

    Anyway, I’m not sure what I’m trying to say here other than you are not alone, and to wish you strength.

    Premier Icon robola
    Full Member

    Some very familiar descriptions here from my experiences too. My eldest step-daughter has just received an ADD diagnosis at the age of 24. This was a private consultation, there was virtually no chance on the NHS. This has come after many years of struggle including some extremely volatile behaviour (violence towards family, self harm, suicidal thoughts) following meltdowns with a whole range of triggers. These include sensory triggers, demand based triggers, social stress/exhaustion from masking. A lot of these indicators also align with Pathological Demand Avoidance, which is what my wife and I believe should be a co-diagnosis really. We spent years hardly going on day trips or on holiday there were just too many potential triggers for it to be worth it really.

    My wife also attended CAMHS meetings where very sophisticated masking behaviour convinced the psychologists that all this was normal growing pains. They were quick to accept that and get her off the books.

    The diagnosis was worth pursuing at her age as she is still at Uni, they need to provide additional support that was not forthcoming before.

    A long and rocky journey that has involved a lot of examination of our own issues too. My wife also displays some of the indicators, she has worked very hard to curb her reactions to defuse meltdown situations. Trying to stay calm is easier said than done and I have had to learn when to just walk away and not get involved.

    Premier Icon revs1972
    Free Member

    Our children are too young to be diagnosed yet, but they could be similar result I expect or one might be higher. Guessing/suspecting.


    @sirromj

    what age are they? my youngest was diagnosed around at around 2 1/2yrs.
    It important to get them diagnosed early , having SEN involved when he went to nursery, where he got one to one when needed was excellent, and the transition into primary school was great.
    Not only that , we had home visits where we learnt so much about autism (my only real knowledge at that point was watching Rainman !!). As we learnt more, I found myself thinking I used to this , I used to do that. My wife often comments that it a shame my work OCD doesn’t extend to keeping things tidy.
    His traits have become more apparent as he gets older (8 1/2 now). As he has transitioned through the years at school some of the teachers have wondered if there is anything wrong with him, as he masks a lot. His current teacher has experience of autism and can see his trigger points and avoids them. The downside of the effort of masking most of the day is that he lets it out when he gets home. It can be tough , but knowing why he acts like that helps when it gets stressful.

    Premier Icon robola
    Full Member

    Indeed, get the diagnosis as early as you can. My nephew received an autism diagnosis at around age 4 I think. It has helped with support at school a lot.

    Premier Icon rOcKeTdOg
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    my OH is a teacher in a school for Autistic kids so she’ll be watching with interest, not all parents can cope with or have the money for help with severely autistic children

    took this just to see
    aq

    Premier Icon unfitgeezer
    Free Member

    some great advice on here, though as we know only to well it can be hard to diagnose at a young age unless its really apparent – going for appointments etc can add more stress to child and parents

    My only words of wisdom are all families with Autism/ADHD have a their own journey to make…it doesn’t always go to plan.

    Premier Icon ernie
    Full Member

    I look forward to watching this. Turbo trainer viewing tonight sorted!


    @paino
    @barrysh1tpeas @tomparkin

    My 10 year old was formally diagnosed as autistic last year. She also has PDA and ARFID (though ARFID is not yet formally recognised by the NHS, though some GP’s do recognise it). She does not have an EHCP and this has proven a significant issue in securing secondary school place (be it state or private). She has avoided coats and tights since the start of school and fortunately the school has been accommodating and allowed my wife to make her ‘skirt/leggings’ which she will wear. Instead of a coat she uses a cape (made by my wife). As with others experience, this has been a learning curve for the immediate and wider family. We have worked hard in ensuring our younger daughter is aware of AS, recognising that there is a strong likelihood that she could feel she is treated second as elder daughter requires a lot more support. My wife at 44 was diagnosed with ADHD (when she told her colleagues the common response was “no shit!”), more for her own confirmation but also to held AS daughter understand she is not alone. Its tough, my heart bleeds for my AS daughter both for the struggles she encounters daily that are simply not recognised by the school but also knowing the pain she will encounter in the future.

    My advice to anyone who is going through diagnosis now or has it for any primary age children is to push for an EHCP with urgency. From what we hear; expect to be refused first time around as LA are seriously underfunded in this provision and appeals are likely forthcoming.

    What I have found most interesting is how tech companies (and forward thinking organisations) are recognising neurodiversity and embracing it, adjusting the workplace to welcome ND staff. Why? Because if you can foster and nurture their skillsets they can be a remarkable asset. And yet schools seem to be scared and see ND children as nothing more than a risk to their OFSTED record/grades.

    Premier Icon TiRed
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    Caught the last 12 minutes. I don’t really know how an adult diagnosis really helps, but perhaps it might be useful in childhood. On the ASQ, on average the TiReds are normal. There is a LOT of variation, however, such that when Mrs TiRed filled it in for me, I was still over 40 😀 . I’m also red-haired, right handed, HLA-DQ4 and O positive. Genes, eh? Can’t live without them.

    Premier Icon revs1972
    Free Member

    going for appointments etc can add more stress to child and parents

    We twice had to take little un in for a EEG test. You try to get a toddler to have electrodes stuck to his head ( any toddler, never mind one with Autism), timed with his usual nap time. Complete failure.
    Second visit they gave us melatonin to help him drift off. Took him out in pushchair , he fell asleep, they put the electrodes on , started stirring , so pushed him back round for another 5 mins. Walked back into hospital, then as we were walking past the restaurant area, the fire alarm went off and the fire doors shut with us stuck between them. Needless to say that woke him up a treat.
    We never did take him back for that test as they were talking about sedating or putting him under to get it done.

    Premier Icon metalheart
    Free Member

    <deleted > sorry, not the thread for this…

    Premier Icon dyna-ti
    Free Member

    I don’t think a simple online test should be considered as any definitive proof there’s something amiss, as adults perhaps the answers given are somewhat bias towards what they think the test wants to hear.

    the actual test for autism, is carried out by a consultant psychologist and is as about as thick as an encyclopedia. But its not just about answering questions about yourself, especially in the case of an adult diagnosis, the entire history is relevant, going back to early childhood, any issues there, referrals, questions given to the parents, primary and secondary school reports, social interactions as a child and as an adult. Plus there’s intellectual developmental issues from growing up in that at certain stages in that kids display traits.

    Everyone growing up pretty much follows the same pathways, does this at this age, does that at that age etc etc. Autistic children don’t really follow that path for the most part

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