How many of you are autistic?

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  • How many of you are autistic?
  • aweeshoe
    Member

    @trumpton Cheers, I will do. @roper Some good tips there, thanks! If only I can didn’t look like Jimmy Krankie with a cap on 😂
    https://goo.gl/images/YZnAox

    roper
    Member

    No problem, A sombrero will give a certain je ne sais quoi.

    aweeshoe
    Member

    @roper Grand plan! It’ll solve the eye contact dilemma too, everyone is taller than me 😀

    darthpunk
    Member

    It’s something that’s bothered me a lot, am I autistic, although, probably leaning towards Asperger rather than Autism. I just took that test that’s been mentioned and i’m hitting 34 out of 50, so that’s probably a big fat yes then.

    Not sure how in date it is, but the general OCD I put up with on a daily basis could probably be described as being on the Asperger side of things

    roper
    Member

    `There are a few online ASD tests, this one has recently been revised,

    http://www.aspietests.org/userdetails.php?target=/raads/questions.php

    Unfortunately most of them do seem to be male orientated and so not as good as picking up female ASD behaviours. ASD diagnosis is going through quite a reform. Asperger’s is not officially diagnosed now and the disorder may be replaced with condition so ASC.

    aweeshoe
    Member

    @darthpunk I’m sorry to hear that it’s something that’s bothered you. OCD is a different condition borne out of anxiety but they share certain elements like obsession, repetition and routine. I get quite anxious if my routine is broken, it gives me a bit of stability when there’s so much else going on to make sense of

    the disorder may be replaced with condition so ASC

    Subtle but important I think.

    Disorder implies broken.

    Condition does not.

    Edit: 151 on the test in that aspietests link, no real surprise.

    Anyone else on this thread done Myers Briggs? The E/I distinction, MB questionairres seem to have quite a correlation with the social questions on the asd tests. I come out as strongly ‘I’ type.

    Premier Icon lovewookie
    Subscriber

    My Apergers is managed fine, until it’s not. Not that I immediately notice, I’m usually only aware that I’ve been rude or distant or something well after the event, when it’s made plainly obvious that something I’m doing isn’t quite right.

    Then there’s the personal struggles. Maybe quite trivial, like last night, on my long ride home, I had planned out what snack I was going to have when I get home. I knew I’d not have that much physical energy, and may not have the mental energy to decide. However, when I got in, the food I’d planned wasn’t there. We had no rice. Normally OK, I’d need a bit of time to make a decision, but my daughter wanted a lift to the train station in 20min, which to me was a bit too close and I couldn’t think. so I didn’t have anything until i came back.
    sounds fairly normal, but it’s the tip of the iceberg.
    I wrote this on facebook a few months ago, to try to illustrate fairly daily allowances ASD people need to make.

    here goes:

    Today is an openly autistic day. (This will be a long one)

    I thought it might be, I woke with blocked sinuses, which has distracted me from day to day things and removed an allocation of energy right from the outset. I’m not necessarily talking just about physical energy, but the emotional energy, the social energy, which at the end if the day, is tied to the physical anyway.

    We try to make things easy on days like this. Go for breakfast rather than having to decipher what products in the fridge are breakfast food, and what I actually want to eat, or don’t, as I rarely have much of a desire for food if left to decide on the spot, tending to decide what I want the night before, or earlier, when I have the tools and energy to make a decision.
    It’s easier to justify, as we needed to get my daughter an advent calendar anyway, so we’re out.
    Actually, it’s just easier to be presented with a limited number of options and choose what I know I liked last time.
    We met one of my wife’s friends from years back. I happily gave up another portion of the days social energy to that. It’s always very fulfilling to meet new people and the potential positive rewards down the line are well worth it.
    I ran through the plan for the rest of the day, so I know how much effort to allocate to each bit, and try to get to the ‘get home’ part without going into shutdown. Thought I got it sussed. Nearly did.
    Supermarkets.
    Not knowing 100% what you want is a really bad idea on days like today. Thankfully my wife was patient with my lack of tolerance for ‘browsing’, but I did need to give myself a couple of timeouts. I’d find a corner, stand, breathe, probably look like a weirdo, give myself 5 minutes to collect a plan and get out of there as quickly and effectively as possible, without just dropping the basket where I stood and walking out, like I’ve done many times before.
    Home. Chill, do some things I’d wanted to do, and done things I needed to do. I’d saved enough for that.
    Then I needed to get food.
    I struggle at weekends with lunch. Weekdays are fine, I just make sandwiches, 90% of the time, sandwiches. Maybe a pot noodle, or last night’s leftovers, but mostly sandwiches, made earlier in the day, so I have little choice or options to confuse me when it’s time to eat.
    Weekends, I could have the same. But I need to make it there and then. So requires a decision, like breakfasts. Breakfast is normally easier. cereal, toast, museli perhaps. Lunch is not so simple, I mean, do I want a sandwich? Do I want anything? Am I hungry? The clock tells me it’s time to eat, and I know if I wait another hour all of my conserved thinking energy will have gone and a decision will be impossible. So I must eat.
    I’m not sure I have the energy for this, but try anyway, convinced I’ll feel more energised after a snack.
    A few things go wrong, and I end up with getting the bread I’ve just cut damp as I didn’t dry the chopping board off. Trivial things, but I’ve used all the energy that was left by being frustrated, or nearly all of the effort I had left. So I put things away.
    At this point I know I’ll only decline rapidly from here. But I’ve saved just enough to to be able to gather a few words, to form a near sentence, to let my wife know that I’m going upstairs, when asked. She asks if there’s anything wrong, but I can’t reply coherently, so half manage a ‘no’ and smile as much as I can muster. I hope she gets that message.
    I spend the next hour and a half on the bed, drifting in and out of sleep, exhausted, comforted by the warmth and the oh so soothing vibration and constant sound of the tumble drier.

    I’d like to say this isn’t a regular occurrence, but days like these happen a lot in our house. We’ve learned over the years how to manage each other, but still get it wrong and Mr emotionally unavailable android takes over with logic, before total shut down silence.

    Today was not one of the wrong days and I am thankful to my girls for that. I’ve replenished a bit of energy and thought I’d share a bit of what life can be like for an autistic adult. Most of my friends over the years I’ve not bothered them with my peculiarities, just socialised when I was able. My family however, had no clue what they were signing up to, and ‘i can be a bit difficult’ somehow doesn’t quite cover it.

    Premier Icon lovewookie
    Subscriber

    yep, in our house we work using the spoon theory.
    There’s a fork theory too..which relates less to the finite number of forks per day, but a returns system, gaining more forks than you expend. Particularly good model to use to consider mental health, not just mental/emotional energy of the spoons theory. Ties into identfcation of benefits from normal tasks and when it’s appropriate to select low hanging fruit to maintain your functionalability.

    The Forks Model of Disability

    aweeshoe
    Member

    @mrmonkfinger I wondered what those letters stood for on Tinder 😂 I just did it and I was surprised to discover I’m an extrovert, I always thought I was shy. The others were innovative, thinking and perceiving which fit the asc (< I like it Roper) profile.
    @cougar I’d not heard of the spoons analogy, it’s a good one.
    @lovewookie Exactly, you’ve expressed it extremely well. My family and people who know me also find me “a bit difficult”. I find life extremely awkward to navigate, there’s too much information coming in at once and it’s difficult to filter out the crap to make necessary decisions. I need quiet time to myself each day to avoid meltdowns and shutdowns, but as a lone parent I don’t often get it until the kids have gone to bed and come down for the umpteenth time because they’re hungry, thirsty…
    I like riding because it’s the only time my mind is focused and relatively quiet. I ride on my own so I can go at my own pace, in the direction I want, or at least aim for and more importantly no demands or distractions (I’ve no one to ride with anyway, but it makes people feel better to think that autistic people are loners by choice) Alhough, I’ve hit a wall in my progression as I can’t figure out how ride some obstacles. I know I need coaching but I’m not sure if someone will understand my challenges, hence the coaching thread but that’s another decision to make

    Premier Icon Cougar
    Subscriber

    Someone mentioned earlier about ASD being notifiable to the DVLA. Well, the DVLA has recently backed down on this under pressure from the National Autistic Society.

    U.K. Updates Driving Rule After Autistic Drivers Protest

    The DVLA tweeted: “In our attempt to clarify the advice for drivers with autism spectrum disorders we’ve clearly muddied the waters and we’re very sorry for that. We have amended the advice on GOV.UK for both drivers and medical professionals, which make it clear that a driver who has an autism spectrum disorder only need tell us if their condition could affect their driving.”

    kerley
    Member

    Someone mentioned earlier about ASD being notifiable to the DVLA. Well, the DVLA has recently backed down on this under pressure from the National Autistic Society.

    Thank god for that because my driving is shocking.

    aweeshoe
    Member

    Phew, that’s a relief. Cheers for the heads up @cougar

    innovative, thinking and perceiving

    innovative = intuitive?

    Surprised on the extrovert thing, as you’ve stated you need quiet time to recover, sometimes it is a close run thing and you fall on the border between the two things and doing the MB test on a different day may give a different result.

    The I and T stuff points to systemising type thinking, I imagine would be common to show if you’re ASC.

    How the hell do you manage parenting on your own? I find a couple of days of being the parent in charge is more than enough to wipe out all my social skills. Then I end up being a not very good parent until I can get time to go off and recharge.

    I can’t figure out how ride some obstacles

    JCB 🙂

    aweeshoe
    Member

    Oops, yeah innovative = intuitive
    “How the hell do you manage parenting on your own?” (I’m not sure how to do that box thing)
    I don’t, but there’s no choice so I just do the best I can. I cover the basics such as making sure they’re clean, comfortable, fed and safe, then if I can engage with them I’ll play a game or take them on an outing. Monday to Friday I’m pretty much emotionally unavailable and over stimulated after work, I’ll listen to their day but I go somewhere quiet if they’re watching telly, playing video games or being demanding of my attention. They know to articulate their feelings, though my eldest has discovered that slamming a door speaks volumes. I choose my battles and being a bit of an anarchist I don’t have that many rules other than be kind and considerate, and that their actions have consequences; such as if they wish to play in their room after bed time they still have to be up for school in the morning.
    When I do get a break I’m either tidying up the kid carnage that’s built up, straight out on my bike or most likely wasting time weighing up what to do first and achieving nada.
    JCB? With my driving skills 😀

    Fair enough, can more than understand that answer.

    box is done with the “/B-QUOTE” thing

    aweeshoe
    Member

    *edit* link didn’t work

    aweeshoe
    Member

    I came across this blog about what it’s like to receive an autism diagnosis at the age of 24. I could relate to a lot of what they said, though they still have hope for acceptance

    https://www.facebook.com/theoddmumout/posts/2197487293677672?__tn__=K-R

    Premier Icon slackalice
    Subscriber

    I found out yesterday that there are 17,000 people on the waiting list for assessment for autism in Norfolk and Suffolk.

    Mental health services in East Anglia are in a desperate state of affairs, whatever funding is available is totally inadequate and after care services non-existent to the point that the mental health hospital in Norwich has the majority of its beds taken up by people who are equipped to leave but there is no where for them to go.

    My hope is that the situation is better for those affected elsewhere in the country.

    aweeshoe
    Member

    Wow! That’s a shocking amount waiting for a diagnosis. I hardly had to wait at all for my initial assessment, however I am 2yrs into an 18mth waiting list to see a specialist for therapy and I can’t get antidepressants without self sectioning as there’s not enough CPN’s with the relevant training.

    Even after 3 suicide attempts in the past year hasn’t given me access to the support I need, I’m considering a 4th go as my circumstances will never change. As the woman in the OddMumOut (sorry for the fb link above) said “the natural difficulties I experienced as a child, teenager and young adult will never cease. They won’t go, as they are things that I’ll face on a daily basis, because I can never change that I’m autistic.

    I thought it would be better when I received a diagnosis and that people would be more accepting, after all we are all there to support the parents of autistic children. People forget that these children grow into adults (if they haven’t committed suicide, 66% of autistic people have attempt suicide and the average life expectancy is 47 for autistic women, the highest suicide risk group) Autism and its constant stigmatisation is a gift to NT’s, it allows them to bond over their awkward children, they make a career out of it and become a pillar of the community.

    If there was a cure I’d take it

    tjagain
    Member

    What can I say aweeshoe – gonna no do that? Your GP should surely still be able to see you for antidepressants?

    I am looking for a little advice as well. My “journey” into understanding my oddness / ASD traits has led me a bit into anxiety as I am now realising more of the odd things I have done and said that previously I was oblivious to are now more obvious. Clearly its a good thing I now have more understanding but the anxiety especially over things I have done and said at work is starting to build up to the point that having been on holiday for nearly 2 weeks I am beginning to panic about going back tomorrow.
    I don’t quite know how to express this properly but its been a long while since I have been so anxious about work. thoughts?

    aweeshoe
    Member

    Tj, it’ll not go to plan so be prepared. For the first day back I like to get my uniform and the things I need ready the night before as that’s the only thing you can practically do. I find it hard to plan in advance as there’s so many variables in an average day that I never know which potential situation to prepare for. I take each moment at a time, and only focus on what I have to do next, then it doesn’t get too overwhelming. Do you have somewhere at work where you can take a few quiet moments? Even if it’s just the toilets, I find that having a few minutes can help me carry on without a shutdown or meltdown. More often than not I wonder what I was stressing about when I get there and just slip into my routine

    trumpton
    Member

    TJ it may be because your recent routine has changed.

    tjagain
    Member

    Ta

    New boss as well which of course is disruption as she is changing things. It just feels like I am more sensitive now to the odd things I do and say and thats what is giving me the anxiety. I’m done too – couple of years off retirement and I have little energy and enthusiasm left after 40 years

    good point about routine. I have already started. Lights on the commuter charged, uniform ready. I never realised before just how ritualised some of this stuff is.

    Night shift as well which doesn’t help.

    Ta.

    aweeshoe
    Member

    Tj; I’ve got a new boss too, just as I thought I’d learned how to get on with my old one. The new one is a proper boss, a former tesco executive, whereas the last one was a managers’ son and couldn’t give a toss. I get the impression that it’s best that I avoid him, just in case I go and say something like “is that excuse applicable for me too?” or “if I had a dick you’d listen”

    I’m really anxious about what I say and do, both inside and outside of work. It didn’t help that someone I know said that I “have odd mannerisms” and that I’m “nippy”, “weird”, “special”, “different” and “bot” amongst other comments, I don’t socialise anymore and hide behind my keyboard because of it

    aweeshoe
    Member

    Piece of Mind podcast with Professor Jeremy Hall, Director of Cardiff University’s Neuroscience and Mental Health Research. He discusses some of the latest research into autism and how autistic people are more likely to experience mental health problems like depression and anxiety.

    trumpton
    Member

    I was told by a private senior and experienced autism physc. that anti depressants need to be treated carefully for the autistic. Probably why your GP won’t prescribe them as they do not have the relevant experience and a mental health hospital will have a physc with the the relevant experience and knowledge. So your GP probably isn’t being unhelpful just inexperienced.

    Hope this does not put you off getting help.

    aweeshoe
    Member

    That’s similar to what my gp said, when I asked why he just said that autistic people can react differently, then when I asked how he didn’t have a reply. I’ve asked to see a regular therapist or cpn but they’re insisting that it has to be an autism specialist, I’d have hoped something was better than nothing especially as I have kids. I do worry about the negative impact I have on them as I struggle to provide a nurturing environment for them

    lustyd
    Member

    “diagnosed with Aspergers 2 years ago”

    Technically you’d have been diagnosed with ASD 2 years ago, as was I. Asperger’s is no longer a recognised thing.

    Kuco
    Member

    A lady at work in conversation last week said she thinks I may have Aspergers due to some traits I have. Since then I have done several online tests for Autism/Aspergers out of curiosity (don’t know how accurate they are?) and doing them, I always fall in the very high borderline.

    Never ever considered Autism/Aspergers

    aweeshoe
    Member

    @Kuco the tests are an indicator that you may be autistic, it does need a formal diagnosis to confirm it as there are other conditions and disorders that are similar but may not have the difficulties which autistic people experience. If there are areas in which you struggle ask the Dr for a referral, your area might have support services

    Kuco
    Member

    I’ve never considered my “traits” as a problem though they have got me into and also out of trouble on various occasions.

    Might be worth mentioning it at my next doctors visit?

    aweeshoe
    Member

    My traits have never been a problem for me either, it’s other people that have a problem with them lol

    kerley
    Member

    My traits have never been a problem for me either, it’s other people that have a problem with them lol

    Too true. I don’t have a problem with my traits but they do hold me back in certain aspects of life (i.e. expected behaviour at social gatherings, expected personality types for certain jobs/levels of job)

    I have long accepted that is not going to change and make the best of the traits I do have in areas that others struggle (non-emotional and objective approach to analysis with a clear and very focused mind). I was lucky that I found a job where that has be in my favour.

    tjagain
    Member

    Kucu – how old are you? What difference would having a formal diagnosis make to your life? It won’t change who you are. Formal diagnosis is not easy and takes a fair bit of your time and professionals time that is in short supply and needed for people with severe difficulties.

    Only you can decide if its worth going for a formal diagnosis but I at 58 years old decided that a formal diagnosis would not really make any difference to me. Whats more important to me is understanding myself and understanding the coping strategies needed t make life run smoothly

    trumpton
    Member

    aweeshoe, when you said ‘how’ – they can make you worst.

    about getting a diagnoses – it’s nice to know for sure though – or not as the case may be.

    aweeshoe
    Member

    @trumpton I could feel worse?! I’m not sure that’s possible, I have suicidal thoughts daily. It surprises me that the greater need you have  the less support you receive. I can understand it though, I’d not wish to be the medic tasked with a patient beyond my expertise and the implications that may have.

    I have long accepted that is not going to change and make the best of the traits I do have in areas that others struggle

    I find it hard to accept that it won’t change, I don’t wish to live with the loneliness of it. It sounds pathetic but social media is the only socialising that I do at the moment, most of it is because I’m a lone parent too so there’s little opportunity to meet people and when I do they’re put off by my traits. I didn’t realise that when you go to book club it’s actually about the host’s decor and shoes, you shouldn’t mention the hair either 😂

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