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Thread: Adult ASD Diagnosis

  1. #1

    Adult ASD Diagnosis

    After a struggle of more than 3 years I've finally got a diagnosis. I'm putting this up here in case anyone else is having the same struggles and would like to discuss.


    Update:

    The primary reason for starting this thread was to offer some advice to those who are trying to get, or are about to start diagnosis.

    Some points that maybe useful:

    *Speak to the National Autistic Society. They really can help with advice and support and I used them as my information benchmark.

    *Speak to family or friends that knew you as a child as they could be contacted during assessment. (They spoke to my parents before I got my diagnosis).

    *Try and find anything from childhood/school/work that shows you had difficulty fitting in. I had old photos and school reports. I also had a reference from an old HR colleague that confirmed the issues I had when we worked together.

    *If you do online AQ tests, don't take the results too seriously. I scored highly in all of them, but a lot of the questions are outdated and I was never asked them during assessment.

    *Document want you want to say as the appointments will be fairly short.

    *Be prepared for disappointment, frustration and a very long wait.


    I'm sure I'll come back and add to this list and hope that others will too.
    Last edited by bonzo697; 16th October 2021 at 10:48.

  2. #2
    Grand Master RustyBin5's Avatar
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    Well done getting the diagnosis. Once you know it becomes a lot easier to implement coping strategies etc. good luck

  3. #3
    I never got an official diagnosis, i just sort of diagnosed myself and it has helped me tremendously in understanding why certain things happened in the past, how and why I react to certain things, and just more comfortable being myself and concentrating on that for a change and not being stressed out about why I didn't fit-in in certain situations. Long-term masking and camouflaging was very tiring and draining and I wasn't realizing the damage it was doing to me.

  4. #4
    I got diagnosed in 2019 at the ripe old age of 55!

    It certainly explains a lot (including my eldest son’s diagnosis) and explains my Autistic traits eg
    Why I like going to familiar places, restaurants, pubs, holiday destinations etc. Obsessional interests ( Watches, Astrophotography). Notice things that no one else seem to. Good at analytical work (which explains why I did a Science Degree and work as an Engineer). Not great in public places where I start stimming, (ie picking my teeth, bending my fingers, tapping on things). I don’t like social gatherings, eg weddings, parties etc. when out and about, I let my wife ask for things and she pays. Sensitive hearing ( very hard to follow conversations in loud situations). Not tolerant to aches. Luckily, don’t have many melt downs (when I do, I just lose it completely!). My Autistic skill is that I am very good at recognising people ( I might not be able to remember their name) but I will know wher I first saw them.

    I managed to get some work adjustments eg, every task given to me is supposed to be written down and I am supposed to only be given one task at a time. Sadly, these have been ignored (although I am having a meeting with my Manager and Union rep to discuss this).

    So now with your diagnosis, you can better explain your thoughts and behaviour :) like others you will wish that you had found out earlier in life????

  5. #5
    Grand Master number2's Avatar
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    How difficult is it to get assessed?
    "Once is happenstance. Twice is coincidence. The third time it's enemy action."

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  6. #6
    Grand Master RustyBin5's Avatar
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    Quote Originally Posted by number2 View Post
    How difficult is it to get assessed?
    My son took 2 yrs to get done - complete pain in the ass - like trying to swim in quicksand. System is so slow

  7. #7
    Quote Originally Posted by number2 View Post
    How difficult is it to get assessed?
    For me it was very difficult. I had the same GP for nearly 10 years and he didn't understand why I hadn't raised it with him before. He did eventually make a referral, which was rejected and I carried on for another 18 months until I had a bad meltdown at work. I got advice from the National Autistic Society and eventually got accepted for assessment. My first appointment was two days before the first lockdown and I was then put on hold until a month ago. I had another three sessions with the clinical psychologist and got my letter today. I've got a follow up appointment next month to discuss the diagnosis and what it means.

  8. #8
    Quote Originally Posted by odyseus10 View Post
    I got diagnosed in 2019 at the ripe old age of 55!

    It certainly explains a lot (including my eldest son’s diagnosis) and explains my Autistic traits eg
    Why I like going to familiar places, restaurants, pubs, holiday destinations etc. Obsessional interests ( Watches, Astrophotography). Notice things that no one else seem to. Good at analytical work (which explains why I did a Science Degree and work as an Engineer). Not great in public places where I start stimming, (ie picking my teeth, bending my fingers, tapping on things). I don’t like social gatherings, eg weddings, parties etc. when out and about, I let my wife ask for things and she pays. Sensitive hearing ( very hard to follow conversations in loud situations). Not tolerant to aches. Luckily, don’t have many melt downs (when I do, I just lose it completely!). My Autistic skill is that I am very good at recognising people ( I might not be able to remember their name) but I will know wher I first saw them.

    I managed to get some work adjustments eg, every task given to me is supposed to be written down and I am supposed to only be given one task at a time. Sadly, these have been ignored (although I am having a meeting with my Manager and Union rep to discuss this).

    So now with your diagnosis, you can better explain your thoughts and behaviour :) like others you will wish that you had found out earlier in life????
    I'm a similar age and have many of the traits that you mention. I do wish I'd found out earlier as I now feel I can finally stop trying to fit in.

  9. #9
    Grand Master GraniteQuarry's Avatar
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    I know more about ASD than I care to get into here, but it’s clear many adults present spectrum aspects and have simply never been diagnosed.

    Good luck going forwards.

  10. #10
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    Same goes for PTSD, many adults just plod on with family life and jobs but events from the past that were extremely traumatic often lay hidden under the humdrum of everyday life and cause depression, bad sleep, lack of motivation etc.

    Its not just a military problem even though thats how most of us know the term PTSD.

    I'm sure a lot of us have something that bothers us, especially men, we are stubborn and in reality dont want to know the truth sometimes..

  11. #11
    I listened to Richard Bacon on radio 5 a few years ago just after he was diagnosed with adult ADHD and lots of what he said resonated with me. I did some investigation and concluded that I was probably somewhere on the ADHD spectrum. I know ASD and ADHD aren't the same thing, but they have a lot in common, so I thought I'd chip in.

    As a kid in the 80s there was no ADHD, there were just unruly kids. Every class had one or two. From the age of 9 until I finished secondary school I almost always sat on a table of my own. I was pretty much the brightest kid in my class through school which meant I was finished faster than everyone else and bored a lot. As soon as I was bored I'd chat to whoever was beside me. I'd do that 3 times in a week and they'd I'd either be working from a desk on my own or the cupboard or sent outside the class. Do that for a couple of weeks and the move to a desk on my own was permanent.

    Talking was replaced by doodling, picking my nose, counting roof tiles - anything to stimulate my mind. I'm not an excessive mover, I can stay still, but I have to be interested.

    This pattern continued all the way through school. I did have behaviour support. I had a book I had to take around each class for the teacher to sign and rate my behaviour and at the end of the day the headmaster and my mother had to sign it too. Nothing really worked, as I never wanted to be disruptive. I was never cheeky or rude to a teacher and had no issue with authority. I just couldn't shut my mouth when bored. I don't have Tourette's or anything like it, but I do blurt out whatever I'm thinking, even when I know I shouldn't. If I wasn't a smart kid I'd have been gently moved out the school I think. However, they put up with me because I was going to get good grades.

    Other than childhood behavioural issues I have a bunch of things that are better and worse than average. I cannot, ever, remember an appointment unless it is in my electronic diary. This has been the case for as long as I remember. Even when I look at a clock and think "I have a meeting in 5 minutes" I'll be 15 minutes late because I saw something interesting elsewhere that took my attention. I procrastinate boring work. I still do it, but it's always last minute. Even tasks that take 5 minutes and infuriate others when I haven't done them I leave for ages, no idea why.

    I do have hyper focus when I'm interested and when I'm learning things. My super power is that I have an exceptional memory and can join dots between competing problems and issues more or less instantly and can break them down and explain them to others easily.

    I'm a serial hobbyist. The truth is, I enjoy the research far more than the actual bobby. I am an extreme extrovert in public. I've done keynote speeches in front of 10k+ people without nerves. I love it. However, all of my hobbies are solitary, and I like time alone to recharge.

    I've taken the online tests and some say I have an ADD issue, some say probably not. I've not taken it further because the diagnoses requires it to have a large effect on your life and I have learned to mitigate most of the issues I have.

    I'm lucky enough to be a boss and have a PA and a wife. That means I can afford to be unfocused because I have someone to keep me on track. I share communicate preferences with my team so they know what works best if they need a quick answer (email almost never gets answered, I do maybe 3 a week). I only take on jobs in organisations that suit my style or who have seen me in action. Once I made the mistake of choosing the wrong org and I was spat out in a couple of months.

    Occasionally I have wondered if something like Ritalin would help me focus and eliminate the procrastination, but I worry it would diminish my super power that that earns me a healthy wage. I'd love to hear others' experiences with it.

  12. #12
    Grand Master ryanb741's Avatar
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    Thing is ASD is a spectrum of mild to profound and life limiting. I have an ASD diagnosis that in many ways I find give me traits that are helpful, my son is profoundly autistic and it will be life limiting and he won't be able to live on his own. So whilst it is nice you have the diagnosis the fact you got to this point regardless I'd say is a very encouraging sign.

    I'd also wager a high percentage of people being diagnosed with ASD in adulthood will work in IT/Tech
    Last edited by ryanb741; 15th October 2021 at 19:12.

  13. #13
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by bonzo697 View Post
    After a struggle of more than 3 years I've finally got a diagnosis. I'm putting this up here in case anyone else is having the same struggles and would like to discuss.
    Quote Originally Posted by bonzo697 View Post
    I've got a follow up appointment next month to discuss the diagnosis and what it means.
    Well done on getting a diagnosis.

    I have a question: What substantive changes or advantages you can expect from gaining an ASD diagnosis? Does it actually do anything other than it being satisfying to be recognised for who you are?

  14. #14
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by Xantiagib View Post
    Long-term masking and camouflaging was very tiring and draining and I wasn't realizing the damage it was doing to me.
    This is an interesting comment. May I ask, what sort of thing did you do in terms of masking and camouflaging?

  15. #15
    Quote Originally Posted by ryanb741 View Post
    Thing is ASD is a spectrum of mild to profound and life limiting. I have an ASD diagnosis that in many ways I find give me traits that are helpful, my son is profoundly autistic and it will be life limiting and he won't be able to live on his own. So whilst it is nice you have the diagnosis the fact you got to this point regardless I'd say is a very encouraging sign.

    I'd also wager a high percentage of people being diagnosed with ASD in adulthood will work in IT/Tech
    Unless severe and life limiting, I see being on a spectrum as being just a personality trait, part of who we are are and something we have to cope with - who's to say what's normal? Of course ideally employers and society could be more understanding but that should be towards everyone - spectrum defined or not (and I just don't see the point TBH). Agree that people will typically find roles that suit their personality.

    If I sound harsh and unempathetic probably because I'm on a spectrum myself.

  16. #16
    Quote Originally Posted by markrlondon View Post
    Well done on getting a diagnosis.

    I have a question: What substantive changes or advantages you can expect from gaining an ASD diagnosis? Does it actually do anything other than it being satisfying to be recognised for who you are?
    the only thing gained is the sense of knowing you were right in thinking you were somehow 'different' to other people , there is little to no support for adults with autism in this country ( people with autism often suffer with co morbid depression and anxiety disorders - these are treated the same as anyone else with them)
    disclosure to friends/family/employers is not really an advantage as you then open yourself up to the stigma assiociated with the condition itself , yes on a legal basis you have more standing but most people with autism i know dont what to deal with the crap that disclosure involves.

    *the above relates to people with HFA/aspergers
    Last edited by pugster; 16th October 2021 at 07:45.

  17. #17
    Grand Master RustyBin5's Avatar
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    Quote Originally Posted by pugster View Post
    the only thing gained is the sense of knowing you were right in thinking you were somehow 'different' to other people , there is little to no support for adults with autism in this country ( people with autism often suffer with co morbid depression and anxiety disorders - these are treated the same as anyone else with them)
    disclosure to friends/family/employers is not really an advantage as you then open yourself up to the stigma assiociated with the condition itself , yes on a legal basis you have more standing but most people with autism i know dont what to deal with the crap that disclosure involves.

    *the above relates to people with HFA/aspergers


    I told my son he just thinks slightly different (he has Aspergers). He told me no dad I think slightly BETTER. Made me chuckle

  18. #18
    Grand Master Sinnlover's Avatar
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    Wow Guinea you have just described me. I am the the exact same and have had similar experiences throughout life. Especially at school. I am not an extrovert though, I hate public gatherings and find it really hard to interact with people in loud environments, but I have no issue with public speaking and do it all the time at work.

    Lots of what people have mentioned on this thread ring bells.

    I also suffer from dyslexia quite badly (as most of my posts here will show) and this was not picked up until I was 15 which did not help. Although I was able to make adjustments to my written work in time for exams. I had to completely retrain myself to read and write before I went to uni as it was the only way I would have made it through.

    I was written off as a bright kid that for some reason could barely read or write, I would be first to put my hand up and answer any question correctly and would also be able to help other kids in class with subjects or problems but I could not articulate this on paper. No help was given, I was just labeled as ‘odd’ (even by my family - still am, you need a thick skin when your Mother and your Sister call you ‘odd’ or ‘strange’ constantly).

    My ability to remember patterns is terrible (even simple things like times tables) but I notice finer detail, differences etc more than most. I have a very good memory but can’t remember where I am supposed to be later that day (I can but need the assurance that having written down brings) - I check my diary 3/4 times a day and have to list everything I need to do in my diary. If I have an appointment I have to be there on time. Not before, not late - bang on time. Unless I get side tracked by something completely different (which is easy) and then all time goes out of the window. I time the most daft things, regular journeys I.e. to and from work and mentally note the difference in time from one day to the next, sports matches, cooking you name it. I too procrastinate but do my best work when under pressure when I really have to focus.

    Again I am a serial hobbyist, watches, shooting, flying jackets, pen knives. I have to know the ins and outs of the subject almost becoming an expert in some instances. (Willys Jeeps)

    I have never been diagnosed with any autism or similar and I am not likely to bother trying to see if in fact I am. I have never spoken to anyone about my ‘problem’ I have just got on with it, I only tapped out this ramble because Guineas post hit a nerve. I am ‘happy’ being the odd one in the family, my Mrs loves me even with all my ‘special’ ways and my unique skill set enables me to hold down a very well paid job, so it’s not all bad…
    Last edited by Sinnlover; 16th October 2021 at 09:35.

  19. #19
    Grand Master Sinnlover's Avatar
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    Quote Originally Posted by Kingstepper View Post
    Unless severe and life limiting, I see being on a spectrum as being just a personality trait, part of who we are are and something we have to cope with - who's to say what's normal? Of course ideally employers and society could be more understanding but that should be towards everyone - spectrum defined or not (and I just don't see the point TBH). Agree that people will typically find roles that suit their personality.

    If I sound harsh and unempathetic probably because I'm on a spectrum myself.
    This is how I see it. (And myself)

  20. #20
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    # metoo! Never been diagnosed officially but it's all there. I know that I can be terrible to live with at times but the family have put up with me thus far and accept me how I am. Keep on trucking (in straight lines, orderly fashion and quietly please)! :) Keep smiling!

  21. #21
    Thanks to everyone who's responded. It's interesting to read other viewpoints and experiences. I've updated the original post as my intention was to offer help for anyone who is considering or trying to get a diagnosis. Perhaps others who've been through it can add to my list.

  22. #22
    Grand Master Velorum's Avatar
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    I am autistic.

    I self identified over 30 years ago and went through a formal 'diagnosis' three years ago.

    I regard myself as part of the neurodivergent community and do not regard autism as a disorder, dysfunction or disability. My brain is 'wired' differently thats all. The main challenges come from living in a neurotypical world.

    I work as a clinician within specialist NHS mental health services for children - a significant number are autistic. My current team welcomed me as an autistic clinician - their view being that it supports the effectiveness of the service.

    In addition to the above I coordinate the NHS neurodivergent staff network for Cornwall - which includes providing peer support for people who have a new identification including practical assistance in seeking reasonable adjustments in the workplace. The network is also working with strategic partners to bring about changes in the terminology used around autism in order to move thinking away from a medical model 'pathologising' mindset of disability and dysfunction.

    There are many on line forums and resources regarding autism - though I would advise caution as there is some weird stuff out there including material by those that assert that it can be prevented or 'cured' - which is absolute nonsense.

    Adult assessment is a real post code lottery and even at its best there are very long waiting lists. The main problem to actually getting one is the ignorance of GP's and other clinicians that really should know better. A common GP response is "you cant be autistic because you can make eye contact" or "you are too capable / able". Many autistic people are adept at masking behaviour, not necessarily by choice but by social conditioning and this does not fit with the prevalent stereotypical view of autism. A number of adults have to really fight for assessment. Referencing the Autism Act and Equality Act may help a little but certainly wont do that much in my view.

    Once identification (or diagnosis if you must!) has been achieved there is pretty much nothing available by way of support and helping individuals make sense of it all. Its left to groups of autistic people to organise this themselves, either on line or via ftf groups. I was fortunate as I was able to link in within networks for NHS staff.

    Just to talk to other people who can articulate how the same sensory and cognitive differences is a wonderfully calming afirming and positive thing. You feel just a little bit less of an alien.

    I'm currently studying autism at masters level at Sheffield Hallam University. At least half of my fellow students are autistic as is the course leader. We have a lively whatsapp discussion group and the peer support if outstanding.

    Anyone identifying as such - please feel free to PM me.



    PS: Have read and on occasion joined in with some interesting discussion on this American based forum. Quite a few UK members there https://wrongplanet.net/forums/
    Last edited by Velorum; 16th October 2021 at 11:26.

  23. #23
    I’ve developed an interest in neurodiversity - partly through my role in recruitment and employability, partly through my experience with my now 18 year old son. Harry was born with Down’s and let’s just say he’s a bit of a character! We were keen to find out as much as we could about his own personal way of viewing the world from the very beginning, to help his education, general well-being and to understand him better. He has been diagnosed with ADHD by one specialist, ASD by another, ADD by another - our experience has been a little ridiculous tbh!
    Harry clearly has global developmental delay, he still loves CBeebies and is like a 4 year old in many ways, but it seems like everyone is keen to stick a label on something which is incredibly complex. He can be unexpectedly intuitive and supportive of those around him and sometimes has a wiseness about him that takes me completely by surprise. As he attends a special school and various clubs etc I’ve met lots of his peers - some of whom have much more obvious signs of ASD - frankly nothing remotely like Harry. I’ve expressed my view - half jokingly - to many of the specialists that we’ve met that it’s all a bit vague and I’m not convinced by the labels, choosing neurodiversity and sticking with it!


    Sent from my iPhone using Tapatalk

  24. #24
    Grand Master Velorum's Avatar
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    Quote Originally Posted by RobDad View Post
    I’ve developed an interest in neurodiversity - partly through my role in recruitment and employability, partly through my experience with my now 18 year old son. Harry was born with Down’s and let’s just say he’s a bit of a character! We were keen to find out as much as we could about his own personal way of viewing the world from the very beginning, to help his education, general well-being and to understand him better. He has been diagnosed with ADHD by one specialist, ASD by another, ADD by another - our experience has been a little ridiculous tbh!
    Harry clearly has global developmental delay, he still loves CBeebies and is like a 4 year old in many ways, but it seems like everyone is keen to stick a label on something which is incredibly complex. He can be unexpectedly intuitive and supportive of those around him and sometimes has a wiseness about him that takes me completely by surprise. As he attends a special school and various clubs etc I’ve met lots of his peers - some of whom have much more obvious signs of ASD - frankly nothing remotely like Harry. I’ve expressed my view - half jokingly - to many of the specialists that we’ve met that it’s all a bit vague and I’m not convinced by the labels, choosing neurodiversity and sticking with it!


    Sent from my iPhone using Tapatalk

    Here is a guest blog that I wrote for one of my fellow SHU students webpage earlier this year

    https://www.janinebooth.com/content/...paradigm-shift






    Also this might be of come interest - its the flyer for our ND staff network in NHS Cornwall

    Last edited by Velorum; 17th October 2021 at 00:27.

  25. #25
    Quote Originally Posted by Velorum View Post
    I am autistic.

    I self identified over 30 years ago and went through a formal 'diagnosis' three years ago.

    I regard myself as part of the neurodivergent community and do not regard autism as a disorder, dysfunction or disability. My brain is 'wired' differently thats all. The main challenges come from living in a neurotypical world.

    I work as a clinician within specialist NHS mental health services for children - a significant number are autistic. My current team welcomed me as an autistic clinician - their view being that it supports the effectiveness of the service.

    In addition to the above I coordinate the NHS neurodivergent staff network for Cornwall - which includes providing peer support for people who have a new identification including practical assistance in seeking reasonable adjustments in the workplace. The network is also working with strategic partners to bring about changes in the terminology used around autism in order to move thinking away from a medical model 'pathologising' mindset of disability and dysfunction.

    There are many on line forums and resources regarding autism - though I would advise caution as there is some weird stuff out there including material by those that assert that it can be prevented or 'cured' - which is absolute nonsense.

    Adult assessment is a real post code lottery and even at its best there are very long waiting lists. The main problem to actually getting one is the ignorance of GP's and other clinicians that really should know better. A common GP response is "you cant be autistic because you can make eye contact" or "you are too capable / able". Many autistic people are adept at masking behaviour, not necessarily by choice but by social conditioning and this does not fit with the prevalent stereotypical view of autism. A number of adults have to really fight for assessment. Referencing the Autism Act and Equality Act may help a little but certainly wont do that much in my view.

    Once identification (or diagnosis if you must!) has been achieved there is pretty much nothing available by way of support and helping individuals make sense of it all. Its left to groups of autistic people to organise this themselves, either on line or via ftf groups. I was fortunate as I was able to link in within networks for NHS staff.

    Just to talk to other people who can articulate how the same sensory and cognitive differences is a wonderfully calming afirming and positive thing. You feel just a little bit less of an alien.

    I'm currently studying autism at masters level at Sheffield Hallam University. At least half of my fellow students are autistic as is the course leader. We have a lively whatsapp discussion group and the peer support if outstanding.

    Anyone identifying as such - please feel free to PM me.



    PS: Have read and on occasion joined in with some interesting discussion on this American based forum. Quite a few UK members there https://wrongplanet.net/forums/
    I'm glad you replied and hope that your PM offer will be responded to.

  26. #26
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by pugster View Post
    the only thing gained is the sense of knowing you were right in thinking you were somehow 'different' to other people , there is little to no support for adults with autism in this country ( people with autism often suffer with co morbid depression and anxiety disorders - these are treated the same as anyone else with them)
    disclosure to friends/family/employers is not really an advantage as you then open yourself up to the stigma assiociated with the condition itself , yes on a legal basis you have more standing but most people with autism i know dont what to deal with the crap that disclosure involves.

    *the above relates to people with HFA/aspergers
    Thanks.

    Quote Originally Posted by pugster View Post
    people with autism often suffer with co morbid depression and anxiety disorders
    Yes, indeed.

  27. #27
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by RobDad View Post
    I’ve developed an interest in neurodiversity
    [...]
    I’ve expressed my view - half jokingly - to many of the specialists that we’ve met that it’s all a bit vague and I’m not convinced by the labels, choosing neurodiversity and sticking with it!
    Yes, labelling annoys me in a similar manner. Labels can be used as a kind of (over-)simplification that don't capture the nuances of a each individual with a range of 'features' and capabilities.
    Last edited by markrlondon; 17th October 2021 at 16:54.

  28. #28
    Quote Originally Posted by Velorum View Post
    Here is a guest blog that I wrote for one of my fellow SHU students webpage earlier this year

    https://www.janinebooth.com/content/...paradigm-shift






    Also this might be of come interest - its the flyer for our ND staff network in NHS Cornwall

    Thanks that’s all useful stuff


    Sent from my iPhone using Tapatalk

  29. #29
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by Velorum View Post
    I regard myself as part of the neurodivergent community and do not regard autism as a disorder, dysfunction or disability. My brain is 'wired' differently thats all. The main challenges come from living in a neurotypical world.
    Well observed and well said.

    Quote Originally Posted by Velorum View Post
    The network is also working with strategic partners to bring about changes in the terminology used around autism in order to move thinking away from a medical model 'pathologising' mindset of disability and dysfunction.
    Excellent!

    Just articulating/clearly stating this aim is, in my view, extraordinarily freeing.

    Quote Originally Posted by Velorum View Post
    A common GP response is "you cant be autistic because you can make eye contact" or "you are too capable / able". Many autistic people are adept at masking behaviour, not necessarily by choice but by social conditioning and this does not fit with the prevalent stereotypical view of autism.
    Yes, this type of response, not just from GPs, does seem to be common. Just because someone appears capable doesn't mean that they aren't suffering severely.
    Last edited by markrlondon; 17th October 2021 at 14:59.

  30. #30
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by Kingstepper View Post
    Unless severe and life limiting, I see being on a spectrum as being just a personality trait, part of who we are are and something we have to cope with - who's to say what's normal? Of course ideally employers and society could be more understanding but that should be towards everyone - spectrum defined or not (and I just don't see the point TBH). Agree that people will typically find roles that suit their personality.
    Quote Originally Posted by RustyBin5 View Post
    I told my son he just thinks slightly different (he has Aspergers). He told me no dad I think slightly BETTER. Made me chuckle
    Yes, well said to both in my opinion.

  31. #31
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    Great thread, thank you for starting this.
    I believe I may have some of the traits. Not discussed with doctor or diagnosed by anyone. I will follow the thread for pointers! Already some brilliant contributions.

  32. #32
    Quote Originally Posted by markrlondon View Post
    Well done on getting a diagnosis.

    I have a question: What substantive changes or advantages you can expect from gaining an ASD diagnosis? Does it actually do anything other than it being satisfying to be recognised for who you are?
    The psychologist has already told me not to expect too much in the way of support, but this will be covered in our final meeting. For now I'm happy to go with relief at getting the diagnosis and validation of what I am, rather than having to pretend to be what I'm not.

  33. #33
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by bonzo697 View Post
    For now I'm happy to go with relief at getting the diagnosis and validation of what I am, rather than having to pretend to be what I'm not.
    Yup, I can understand that that is a benefit in its own right.

    Thanks for your resply.

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    Grand Master Dave+63's Avatar
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    It strikes me that there are a large number of members here with a varying degree of the traits associated with being somewhere on the spectrum (me included), perhaps more than society in general.

    Perhaps being obsessional enough about watches (and/or other hobbies) to join a forum is a potential indicator of the condition?

    It’s interesting to hear other people’s experiences and is certainly of some comfort to know that the things that my wife and family find strange about me are actually not that strange after all.

    I’ve never given it any real thought and just carried on in my own way without worrying what others may think; I suppose deciding that I needed to work for myself in 1995 has helped greatly. However, my daughter recently being diagnosed as on the spectrum at the age of 26 and discussions with my wife about it led me to the realisation that I’m probably somewhere on it too, albeit at the lower end.

  35. #35
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by Dave+63 View Post
    It strikes me that there are a large number of members here with a varying degree of the traits associated with being somewhere on the spectrum (me included), perhaps more than society in general.
    Yup, I think so. Same as in the field of IT (at least historically).

    Quote Originally Posted by Dave+63 View Post
    I’m probably somewhere on it too, albeit at the lower end.
    Without intending to get too hung up on semantics, I don't think it pays to speak of or even think of "lower" end or anything like that. It's not a matter of higher or lower anything, just one's personal variations of mind and character.

    To paraphrase Velorum above, using words like "lower" or "higher" seem to me to be redolent of a "medical model 'pathologising' mindset of disability and dysfunction", which I think we should seek to get away from.

    "Diversity" is in, right? Well, that applies to us too.

  36. #36
    Grand Master Dave+63's Avatar
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    I hear what you’re saying and don’t disagree; It’s hard to know how best to describe what I mean though.

    I actually quite like the use of spectrum as a scale of how different from the recognised norm a person is but appreciate that it will bring a stigma with it.

  37. #37
    Quote Originally Posted by markrlondon View Post
    Yup, I think so. Same as in the field of IT (at least historically).



    Without intending to get too hung up on semantics, I don't think it pays to speak of or even think of "lower" end or anything like that. It's not a matter of higher or lower anything, just one's personal variations of mind and character.

    To paraphrase Velorum above, using words like "lower" or "higher" seem to me to be redolent of a "medical model 'pathologising' mindset of disability and dysfunction", which I think we should seek to get away from.

    "Diversity" is in, right? Well, that applies to us too.
    I agree, the use of 'spectrum' suggests something 2 dimensional. In reality there are many more aspects to personality than ASD (ADHD or whatever) so the personality should be looked at as a whole, multi-dimensional thing.

  38. #38
    Grand Master RustyBin5's Avatar
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    Quote Originally Posted by Boss13 View Post
    Great thread, thank you for starting this.
    I believe I may have some of the traits. Not discussed with doctor or diagnosed by anyone. I will follow the thread for pointers! Already some brilliant contributions.
    Honestly I think the best way to view the spectrum is that 100% of the population is on it and those you might assume are not on it are just at the extremely mild end. I think everyone has a trait or two if you look hard enough

  39. #39
    I was told at the start of assessment that there are two outcomes:

    1/ You are autistic
    2/ You are not autistic

    Clearly some people are more profoundly affected by it, but you can't be more or less autistic than someone else. You either are or you aren't.

  40. #40
    Grand Master learningtofly's Avatar
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    As someone who probably isn’t on the spectrum it’s refreshing to see the way this thread has developed. I respect the attitudes being displayed, and it’s reminded me again that we should always try to be tolerant and non-judgemental of others. We’re all different, and that should be something we embrace.

  41. #41
    Grand Master RustyBin5's Avatar
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    Quote Originally Posted by bonzo697 View Post
    I was told at the start of assessment that there are two outcomes:

    1/ You are autistic
    2/ You are not autistic

    Clearly some people are more profoundly affected by it, but you can't be more or less autistic than someone else. You either are or you aren't.
    I disagree 100% that you can’t be more or less autistic than someone else. A highly functioning Aspergers person who is in mainstream schooling etc is a world apart from savant level. It’s called a spectrum for a reason.

  42. #42
    labelling has always occurred whatever the diagnosis (on a medical standpoint it also acts as a reference ) , its the stigma attached to the condition that does the most damage as everyone is thrown in the same barrel by the general public (and ime by quite a few medical 'experts' ).

    the healthcare system itself is way behind on training its empoyees regardling autism awareness and diagnosis which is why the waiting lists are so long , NICE guidleines are your friend and they sometimes need pointing out to the comissioner responsible for the service at your local CCG .

    at the end of the day where you are on the spectrum is irrevalent , its how it affects your life that matters.
    i can only speak as someone with HFA - the problem being i 'know' i think differently from other people and its trying to fit in that has caused me the most problems - something i no longer bother trying to do.
    Last edited by pugster; 17th October 2021 at 18:01.

  43. #43
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    Anyone else actually quite liked the isolation aspect of the pandemic? It has given me a good excuse not join in a lot of things that I would normally have been expected to.

  44. #44
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    Quote Originally Posted by tixntox View Post
    Anyone else actually quite liked the isolation aspect of the pandemic? It has given me a good excuse not join in a lot of things that I would normally have been expected to.
    No, I’ve hated the fact that having spent a lifetime’s journey practicing and refining all those social interactions you need in order to operate in a world populated by NT muggles, in the last year and a half of not travelling or doing F2F meetings I feel I’ve regressed into a less user-friendly state. I hate it and can’t wait for normality to return.

    I wasn’t going to reply to this thread at all to be honest because the word “diagnosis” connotes something wrong with the person. For sure, many autistic people are disabled but so are many NT people. My autism isn’t a disability, nor is it an excuse for anything I haven’t achieved in life.

  45. #45
    Quote Originally Posted by draftsmann View Post
    No, I’ve hated the fact that having spent a lifetime’s journey practicing and refining all those social interactions you need in order to operate in a world populated by NT muggles, in the last year and a half of not travelling or doing F2F meetings I feel I’ve regressed into a less user-friendly state. I hate it and can’t wait for normality to return.

    I wasn’t going to reply to this thread at all to be honest because the word “diagnosis” connotes something wrong with the person. For sure, many autistic people are disabled but so are many NT people. My autism isn’t a disability, nor is it an excuse for anything I haven’t achieved in life.
    Totally agree with this and in fact I told my boss that I wanted to be allocated a desk to come back as I missed the social interaction. I for one have issues using the phone and prefer f2f conversations. Plus my few friends at work I have know for 20 years +.

    People like me with ASD (Or as it's now known - ASC - Autistic Spectrum Condition) is that making friends and retaining friends is very difficult, hence why it is so important that things get back to normal as soon as possible, especially at work (which currently has mask wearing, one-way systems, limited toilet numbers and many desks out of bounds :)

  46. #46
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    Quote Originally Posted by RustyBin5 View Post
    I disagree 100% that you can’t be more or less autistic than someone else. A highly functioning Aspergers person who is in mainstream schooling etc is a world apart from savant level. It’s called a spectrum for a reason.
    100% this. Some people on the Autism Disorder Spectrum cannot speak, cannot walk because of severely undeveloped motor skills and will never be able to live independently. Comparing that with someone who has Aspergers and is a bit socially awkward as if they are both the same thing is astonishing.

  47. #47
    Grand Master GraniteQuarry's Avatar
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    Can I ask - did any of you have late development of speech or speech disorder as children?

  48. #48
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by bonzo697 View Post
    I was told at the start of assessment that there are two outcomes:

    1/ You are autistic
    2/ You are not autistic

    Clearly some people are more profoundly affected by it, but you can't be more or less autistic than someone else. You either are or you aren't.
    Don't take such a statement too literally or out of context.

    As far as I can see, such a statement is meaningful only in terms of a definition that the state (or perhaps some medical opinion) is happy with. I.e. For the purposes of labelling and simplicity of diagnosis, either you are autistic or you are not; for the purposes of assessment, either you are autistic or you are not.

    BUT... that is complete bullshit when it comes to the individual. Autism is not a single thing. It is a range of different traits.

    I agree that you cannot be "more or less autistic than someone else". As I said above, it is a mistake to speak in terms of "higher or lower anything" or, as you say, "more or less". It is more accurate to say that everyone, diagnosed as autistic or not, is different. As far as autism is concerned, there is no single thing that is or is not autistic.
    Last edited by markrlondon; 17th October 2021 at 19:57.

  49. #49
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by GraniteQuarry View Post
    Can I ask - did any of you have late development of speech or speech disorder as children?
    I was taken to a speech therapist when I was a young child, maybe five or so, perhaps younger. I remember the visits to an extent and found them entertaining in a number of ways. I recall my mother telling me that I was referred to a speech therapist because I didn't speak (much).

    The eventual diagnosis was that I did not have late development of speech; I just didn't say much unless I had something worth saying or I needed to say something.
    Last edited by markrlondon; 17th October 2021 at 19:56.

  50. #50
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by Kingstepper View Post
    I agree, the use of 'spectrum' suggests something 2 dimensional.
    I don't actually mind the "spectrum" word because:
    (a) It is still an improvement what went before.
    (b) A spectrum does not inherently imply "higher" or "lower" or "better" or "worse".
    (c) A spectrum does seem to me to imply "differences".

    And it is differences, divergency, diversity, that are the issue.

    Quote Originally Posted by Kingstepper View Post
    In reality there are many more aspects to personality than ASD (ADHD or whatever) so the personality should be looked at as a whole, multi-dimensional thing.
    Absolutely, I agree.

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