'High Functioning' Autism

eeL
eeL Community member Posts: 274 Empowering
in Autism and neurodiversity

Hi Guys, so I'm just wondering if anyone gets the reactions I get and how they deal with it…

I'm autistic, with other accompanying issues. I've got auditory processing issues, very light/ heat / sound sensitive, quickly stressed and overloaded, I have Irlen Syndrome, probable ADHD, I'm personally dysfunctional to the point where I can barely look after myself and can't manage my own finances and I'm bereft of any abilities at all socially. However, if I ever say I have autism the reaction I get is either 'Everybody's a bit autistic', or 'She makes it up to get her own way' or 'You're just an attention seeker, there's nothing wrong with you bar being a drama queen' or the disbelieving scowl and 'Hmm, well you must be very High Functioning then' which seems to them to mean 'barely autistic at all'.

My life is such a depressive, difficult mess and I struggle so badly in the workplace, it's almost unbearable every day, I'm awake all night with anxiety, I get bullied and manipulated and I'm always struggling to juggle bills so I can't eat very well and my house is like a pig sty. I get hurt tripping on the mess indoors and outdoors and I do that alot as my spacial awareness is non existent and I'm very clumsy and my manual dexterity isn't great. Sometimes I just sit down and cry. So it's upsetting that, rather than helping, being supportive or just letting me be, people are nasty about me and don't appreciate anything that's going on because (in their view) I'm just a rubbish human being and a bit of a scruffy, temperamental a*sehole.

It seems that people consider 'high functioning' autism to not really BE autism, or that they think you're advantaged because you're Alan Turing or Steve Jobs or The Rain Man and really should be doing better for yourself if you really WERE that way. And the presumptions about my inability to do stuff is astounding - somehow they'll believe me enough to dump stigmas and prejudices and preconceptions on me but not to give any compassion or consideration. It makes me feel that they're right and I AM just a pathetic person who hasn't bothered to get their act together, but I try so hard and just find it all so impossible. It's like trying to run up a hill with no legs.

Does anyone else get this and how do you deal with it?

Comments

  • Jimm_Scope
    Jimm_Scope Posts: 5,349 Online Community Team

    Hey @eeL, first of all welcome to the community 😊 I hope this place can be a source of support for you, because it sounds like you've really had a rough time of it.

    I don't have autism but I do have ADHD. I've heard everything you've heard, about making it up, about it being my fault etc. The solution most commonly offered is "ignore it", but I know that's difficult. It's hard to ignore something you hear so often. There is a lot of misunderstanding about neurodiversity, and it feels like you can do no right. People have an idea of what autism looks like from the media they consume, and because you aren't exactly like that they doubt it. It's an ignorance that is difficult to correct.

    But there is nothing wrong with you. We all need support sometimes, I hope you feel welcome here and we can help you in some way. I'll be sending you an email shortly so please do keep an eye out for it!

  • eeL
    eeL Community member Posts: 274 Empowering

    Thanks, that helps. I do try to ignore it but it wears me down, I've had 56 years of it! It's given me low confidence, self-hatred, suicidal thoughts (in the past) and shame. I don't mind how I am until everybody else piles in criticising me! It's so bad for your mental health when you hear absolutely NOTHING positive. Nobody wants to be like that. Even my family have pretty much disowned me for being 'flaky' as I've never done the great things they expect of me. Truth is, especially in the workplace, social skills make or break things for you. It's not that I really AM an awful person, I don't go round giving out abuse or shouting and I do my job better than most, but that's not what makes the world go round is it? It's all the networking and pleasantries and crawling and opportunist advantage taking and making the right noises at the right people at the right time and being liked - all of which I can't do. If I'm honest I struggle to even PRETEND to do it because I find it really two-faced and dishonest, most of the successful people in my workplace are slightly dishonest, not true to themselves and say things behind people's backs. And I don't get why people agree with stuff when they say behind closed doors that they really don't! To me that helps nothing. Plus I can't have friends round (even if I had any) because my house is a disastrous mess as I struggle so much. I'm always short of time as I fall asleep all the time because it's all so exhausting and I can't settle at nights! It's really not a life at all. I was very depressed in the past but I try to fight it now. But it IS a fight. I'm glad at least one person understands, thanks.

  • IrishManc
    IrishManc Community member Posts: 55 Empowering

    I honestly think that my Catholic faith and the fact I’ve been out as gay for far longer than I’m out as being autistic, where there are many similarities between the two, spanning my 30 years in supermarket retailing at age 54, has in many ways been a great help and a great strength, regardless of anything to do with and behind going for the diagnosis - during Covid, I became aware that I was immune to all the nonsense that “normal” people had to endure and I was able to get directly to the heart of the matter on many issues without all the “noise” and drama (and I’ve encountered a lot of drama queens on the gay scene) - but the fact that there is no appropriate adult support out there is a huge issue, starting with post-diagnostic assessments, where I really believe that a public body separate from the NHS and GP’s is urgently needed for both hidden disabilities and mental health issues

  • Amaya_Ringo
    Amaya_Ringo Community member Posts: 167 Empowering

    I can relate to this on so many levels. I actually had my MR reject my PIP claim entirely because I was at university at the time - for some reason that meant I had no support issues.

    I've learned to mask quite well and can do it brilliantly at work, which probably confuses people - I've had lots of conversations about autism with people over the years without them knowing I have it. But my executive function is horrible, and impacts a lot of practical, logistical, navigational and other tasks.

    have had all the "everyone's a bit autistic", "we're all on the spectrum", "you don't look autistic" (?!), "but you're bright!" comments…in fact, when I was at university doing my postgrad, I really wanted to stay in academia. I literally begged my supervisor to help me with the next stage. And he was like, no, you don't need it, you'll be fine. You're not disabled enough for that."

    …So I didn't get to stay in academia :/

    I wasn't diagnosed as a kid, and boy was I bullied by the school headteacher (small village school) who singled me out. He saw a bright child being repeatedly naughty and so punished me at every opportunity.

    Re: COVID - I feel like in lockdown, everyone else got to experience the world how autistic people do. A world that's inconvenient, not designed for them, where they're made to do things that are illogical or isolating. As an autistic person, I felt much better equipped to handle lockdown than most of the NT people I know because I'm used to having to strategise around awkward settings.

  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 11,814 Championing
    edited November 3

    I have just been on a couple of courses to become an Oliver Mcgowen Trainer in expert by experience and we don't diagnose high or low-functioning autism as well as Asperger Syndrome as it puts a label on people who have already got a diagnosis but if that's what you have been diagnosed as please feel free to use it I'm just saying that they have stopped using the term.

  • eeL
    eeL Community member Posts: 274 Empowering

    Amaya_Ringo SO True!

    Yeah, 'You're not disabled / autistic enough' - I always get that one. Or people saying they know someone in their family who is REALLY autistic, like 'not a fake autistic like you'. Everyone when I was a kid thought I was lazy - apparently I had the intelligence to be brilliant, I was just 'deciding' not to bother. My mother still reckons I just have a problem with authority and I'm wilfully difficult by choice. So, in effect, I grew up being constantly told I was a complete a*seho*e with a horrendous personality who made everyone's lives difficult on purpose.

    Re COVID, you're totally right, they lived our lives for a bit. Now they all reckon they've got mental health problems because of it and all the kids are backwards in their learning through lack of support and they're all depressed through isolation and everyone RECOGNISES the terrible, long lasting effect of it all on them and how much more needs to be done to fix the resulting education and development and health issues and the state of things because of all the unimaginable 'UNPRECEDENTED' 'trauma' they all had.

    Not to take away from anyone who suffered due to isolation during COVID, just saying the disabled have been putting up with it for years and nobody noticed or cared. And they still don't. I think you'd get more sympathy for talking about how COVID affected you (because everyone identifies with it) than you would for talking about your disability.

    durhamjaide2001 I think I may have been one of the last people given this diagnosis as even medical experts have raised an eyebrow and said 'I'm surprised you were told that, it's not a 'thing' anymore'. I'm glad it's not, but it's been a 'thing' for enough generations to date that it's going to harm people for alot longer before the phrase and accompanying assumptions die out. Not sure they ever will as they're passed down by the armchair experts.

  • Amaya_Ringo
    Amaya_Ringo Community member Posts: 167 Empowering
    edited November 3

    I was diagnosed with Aspergers Syndrome in 2005, but I haven't used the term in a long time. That's not to say I feel labelled by it, just that it's no longer current parlance so seems redundant.

    Sometimes experts or training courses also like to promote "person with autism" instead of "autistic person" as well, even though that doesn't jive with the majority of autistic opinions.

    I'm very much about the autistic person choosing for themselves how they are comfortable describing their disability, because for far too long we've been told by people Outside (usually NT) how our lives are and how we should describe ourselves/be described. Many experts are fixed on socially curing us, but don't engage with us directly if they can relate to (NT) parents or carers instead :/ I think labels are a really sensitive subject for a lot of ND people, honestly. So yeah. I think it's a very individual thing.

    @eeL, exactly that. You nailed it completely with the Covid/post covid experience and how they NOTICED the impact of that but still nothing has changed for us except that the previous government claimed we were all diagnosing on TikTok…sigh.

  • eeL
    eeL Community member Posts: 274 Empowering

    Oh did they? I missed that one 😠 I think general approach is to say you don't have any problems so nobody needs to bother. If you're not diagnosed you're not ND (VERY untrue!), if you ARE then you self diagnosed on TikTok, if you have a NHS diagnosis you're 'not autistic enough' - all I see is excuses and ducking the issue. Translate as 'Go away, not interested'. Or if anyone DOES acknowledge it you'll be blamed for everything (especially your own problems!), made a scapegoat for any social unrest and told that no problems exist anywhere in your life, it's just your PERCEPTION of things because of your autism, nobody ever does anything wrong it's just how YOU see it because you're ND and you're the problem. I'm 'gaslighted' constantly. Or you won't be able to do something because of it. The only people who recognise my autism just beat me up with it and use it against me - it's an excuse for everything and not to take me seriously and to ostracise me. I find people say I do or don't have it depending on what suits them. That annoys me most of all!

  • WhatThe
    WhatThe Community member, Scope Member Posts: 2,362 Championing
    edited November 3

    I like 'high functioning' autism too. People know little enough about autism without confusing everyone with new terms for use in care settings and services.

    Everyone when I was a kid thought I was lazy - apparently I had the intelligence to be brilliant, I was just 'deciding' not to bother.  

    "….is lazy" was all one teacher wrote for an end of term report. That line in a school report I looked at on the day my diagnosis was confirmed made my head explode like fireworks for hours, days.. I didn't open it out and haven't read the rest because it would upset me too much.

    My mother still reckons I just have a problem with authority and I'm wilfully difficult by choice. 

    eel, mine told me in my mid 40's that I needed 'correction'. I'd never heard her use that word so I was cross and astonished - in my 40's 🤣 - she was in decline and probably regressing..

    Thanks for starting this thread 😍

  • eeL
    eeL Community member Posts: 274 Empowering

    WhatThe Does it make you angry? I try not to look back because I get upset too, but the 'what could have been' when your life's a mess does breed bitterness. And I reckon half my mental health issues are from a lifetime of putting in 110% only to be told I'm a tool. In the end I DID stop bothering at school because I saw no point in putting the work in and being called lazy when I could just be lazy and get called lazy, and at least then I could feel the comment was fair, the injustice didn't grate so much.

    'Correction'?! Oh gees, that's extreme. Pardon me if it's inappropriate but that made me giggle it's so terrible. It's amazing we're still alive really isn't it?! lol

  • WhatThe
    WhatThe Community member, Scope Member Posts: 2,362 Championing
    edited November 3

    That day and for a long time afterwards but not now. Rage that my parents had never known and that my sister had been allowed to bully me for my entire life!

    It was 8 years ago and this forum is the nearest thing to social support I've found since then 💜

  • Bluebell21
    Bluebell21 Community member Posts: 3,754 Trailblazing

    Hi @eeL @WhatThe @Amaya_Ringo @IrishManc I think you are all amazing people. The fact that you are prepared to share your stories and offer help to others when you have had such difficulties in your lives makes you true warriors. You have my total respect.

    I hope the forum is helping you to see that others have been in the same position as you and that it is not you that has the problem but others misunderstanding.

    Please all take care of yourselves.

  • Strawberry1
    Strawberry1 Community member, Scope Member Posts: 5,240 Championing

    Bless you all always 🙏 ❤️.

  • IrishManc
    IrishManc Community member Posts: 55 Empowering

    Our experiences of being written off as “hopeless and heedless” “freaks and weirdos” by those who should know better, who seek to belittle and undermine us at every opportunity, refusing to understand where we are coming from simply reveals their hypocrisy

  • Amaya_Ringo
    Amaya_Ringo Community member Posts: 167 Empowering
    edited November 4

    @Bluebell21 Thank you :) I think in my case it made me stubborn, LOL :D

    But I recognise so many of the conversations here. I do think there remains a black hole re support for autistic people who do not have a cooccurring intellectual impairment. And while I can see why 'low functioning' could be offensive, and thus why 'high functioning' has been torpedoed, I also feel like it's helped make those of us who formerly fit that category much more invisible. I don't know whether the push to get rid of the term comes from autistic people or carers/parents/NT experts, and as I said before, I don't want to dictate to any autistic person how they are comfortable describing themselves - BUT if the end result of the terms disappearing means a lack of support…then surely that's not a good thing.

    I have certainly seen that a lot of the push to change labelling around autism has tended to come from outside the autistic community, by people who mean well but maybe haven't considered all the implications. I mean, even the word autism doesn't have the nicest meaning, but we've claimed it and taken ownership of it, so it belongs to us now. Maybe other terms should/can be like that too for some people, and we should obviously accept that usage.

    I've achieved a lot of things since my diagnosis, and I really just would love people to notice and acknowledge the effort that has gone into some of these things. For example, fighting tooth and nail to stay/be employed despite the lack of support…people are just talking about jobs like they're so mundane and normal they don't even require discussion, but for disabled people (and especially autistic people, given the stats), getting and keeping a job is HARD. A little more credit and a little less judgement would not go amiss. (And that includes the people who can't work, but who are achieving steps every day in their lives, even if those achievements don't meet NT standards).

    It's lovely to talk to people who also understand the same lived experiences.

    Sorry if this post is rambly, I've been at work today, had one hour's sleep last night and have a stinking cold.

  • Bluebell21
    Bluebell21 Community member Posts: 3,754 Trailblazing

    Hi @Amaya_Ringo You post is not rambly at all. Thank you for posting when you must be worn out. Take care of yourself.

  • egister
    egister Posts: 500 Empowering
    https://forum.scope.org.uk/discussion/comment/936122#Comment_936122 
    My opinion is that the government should additionally compensate for the efforts of a disabled person that he spends on everything related to work. This is a tough test.

Categories