Am I making too much of this?

My flatmate calls my autism a 'sob story'. I try to stand up against an ableist post on Facebook and an autistic man calls me 'entitled', and tells me that 'autism is only a disability if you let it be one', and I'm 'sickening' for 'making it more than it is'. My old teacher tells me that 'everyone feels on the edge of the group sometimes'. Nurses say, 'Your autism isn't as bad as some people's.' About a million people have said to me, 'Everyone's on the spectrum somewhere.'

Is it me? Am I just self-pitying and not strong enough? Or is it that no one understands?

  • Nobody has the right to talk about your autism like that. I guess it's incredibly difficult for people to understand how difficult it can be at times to live with autism. I would be bothered if people were saying things like this to me. 

    My advice is try not to get involved with negative posts/conversations about autism. The people probably aren't going to properly listen to what you're saying and it will just make you feel worse.

    Comments about how bad your autism is just aren't helpful. Yes it's a spectrum and some people are more effected than others but at the same time some people may seem that they function well when actually they really struggle. And really comparing one autistic person to another is just silly. No two people are the same.

    I don't think it's true that no one understands. I think there are plenty of understanding people. It's hard but I think we have to try and switch off to the less understanding comments. Sometimes I think they are actually well meant. 

    Try not to let it get you down.

  • Yup... I've heard all of those comments too. People just don't get it. They don't take the time to understand, and they speak with an unqualified authority and confidence on something for which they're actually quite ignorant.

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    And, you can't compare autism. I was with a group of autistic people this week - all of varying intelligences, skills, needs, life experiences and abilities etc. One autistic woman with learning difficulties told me I was "lucky to be intelligent". Yet, I thought how lucky she was to have a husband and children. There was another young chap who was really struggling to find work - he really wanted to work - yet I'm the 'lucky' one for having the skills to be able to find some sort of work comparatively more easily (he was really struggling, bless him). Yet, I don't consider myself better off for working. I hate working.

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    And that's the thing with autism - you have to take each person on an individual basis, and understand how it manifests for them. You have to take time to understand their strengths and also the unique challenges they face. You have to get an understanding of their overall lives and persona. You can't make blanket statements.

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    On the plus side, when these schmucks make such ignorant statements, at least they're clearly advertising that they're usually the best people to avoid... even if just for a little while. But, I get just how draining it can be to have to deal with them... that despite your own doubts, fears, worry and exhaustion, that you have to listen to these cretins making stupid and ill-thought-through comments too. Life as an autistic can be hard... damn hard. And the frustrating bit is that given the current lack of general awareness surrounding autism, we're also charged with the responsibility of not only enduring autism, but in our exhaustion we also have to teach the ignorant masses around us.

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    Sometimes it's soul-destroying, and utterly, utterly wearisome. And, you can feel like a ghost wandering through life, not truly seen by those around you.

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    But, you're not alone Sickle Moon. You're definitely not alone.

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  • A few autistic traits does not make someone autistic, and 'Everyone' is not on the spectrum.

    I think there is a bit of a misunderstanding amongst NTs as to what the 'spectrum' is, and for that reason I prefer not to use it.  The autistic spectrum refers to the myriad ways someone who is autistic may be affected (that is how I understand it anyway), and not to the fact there is a spectrum of humanity to which everyone fits and depending how severe the 'autistic traits' are, one is classed as autistic or not (which is how many NTs understand it).

    To say such things as 'everyone' gets like that, and 'everyone' is on the autistic spectrum belittles autism.  They are not autistic and cannot feel at all what it is like.  And there is no magic switch that can be used to turn autism off and on at will.

    Everyone is affected in a different way, but there are certain commonalities that are shared between autistic people.  Such things as difficulty in social situations, disliking change, sensory overload, difficulty in communicating, unconventional body language, are common to autistic people.  Added to that is the severe anxiety, depression, dyspraxia, dyslexia, adhd, bipolar, and other comorbid conditions and there can be severe problems in one's life.

    To say that some autistic people are not affected as badly as others is very unhelpful.  That is like saying someone without a foot is not as severely disabled as one without a leg.  There are still needs that need addressing and trying to play one off against another does nothing to address the needs.

    I can put on a fair act of being NT at times, but then I say something or do something which is either a cause of great laughter amongst others or which has others saying I shouldn't behave like that, or even has someone wanting me to seek help.  (I do get help for my autism by the way in the form of a support worker from an autism charity at work).

    But with many things, one cannot argue with a closed mind.  Autism is not understood at all by the majority of NTs (I've lost count of the number of times someone has told me not to let it define me).  There is a long, long way to go.

  • I echo what every one else says.  Those with ASD are affected differently.  That’s why its Spectrum Disorder.

    You ARE strong. Your flat mate is an idiot and the nurse and teacher are ill informed.  Show them the too much information video from NAS on YouTube.  Also offer to send them links to the NAS website. 

    You have the power!

  • Hi Sickle Moon 

    Autism awareness is still very much in its early days, so most people, even some people with autism, don’t know that much about it and they understand less. 

    I was only diagnosed last year and although I did a ton of research, I’m only just slowly starting to understand it. So I definitely don’t expect anybody else to understand it. How could they? My experience of autism is different from what I’ve read about and often when I read something, it’s talking about how autism appears to others from the outside, which is often different to how I experience it on the inside. So even a lot of information available, about autism, isn’t correct.

    So never expect people to understand it, because they don’t. That’s not good or bad, it’s just as it is, we’re still learning and if we’re patient with people and we don’t expect too much of them, we can help them to understand. 

    If you would like people to know and understand autism better, if you get the opportunity, you could let them know. But only if they’re interested and never when you’re coming from a place of defending yourself or something like that. Don’t defend yourself, you don’t need to. You know who you are and that’s all that really matters. But if people are interested in finding out a bit more about autism, then you can certainly tell them. 

    Maybe your flat mate  was having a bad day when she that your autism was a sob story, or maybe at that moment, it sounded to her that you were using it as a sob story because maybe you weren’t explaining yourself very well at the time?  I know that sometimes when I’ve been attempting to tell somebody about something and I bring autism into it, and I haven’t don’t a very good job of it, it can sound like a sob story. It wasn’t a sob story but my poor attempt, at that time, of trying to explain myself, made it sound that way. And that’s ok, even if I was using it as a sob story because we probably all use a sob story every now and again, there’s nothing wrong with that. 

    As for standing up against posts on Facebook, I wouldn’t bother. Who are you standing up against? If somebody has put something on Facebook that’s unkind, then they are probably feeling terrible about themselves and as a way to make themselves feel better, they write something unkind about somebody else. Happy people don’t post horrible posts so when you see one, you can be sure that the person who wrote it is feeling terrible inside in some way.  The best thing we can do when somebody is feeling terrible, is be kind to them, not provoke them further by defending ourselves against them or we can just plain old leave them alone until they’re feeling better.  If we defend ourselves, it won’t make us feel better but it might make the other person think they feel better because it might them feel anger, which can temporarily replace how terrible they really feel.

    So of course, look after yourself but not by getting into arguments over stuff that is never going to end well. 

    If you’re getting concerned about all of these comments that have been made to you, and you’re wondering if they could have any truth in them. Next time somebody says one of these comments to you, ask them if they could it explain it better to you. You might be coming across to most people, in a way that you’re not aware of.

    It’s not easy for most people to see themselves from somebody else’s perspective, but it’s actually one of our traits that we often really can’t do that. So instead of getting upset with people, ask them, with a genuine interest, if they will explain to you in more detail, why they think you come across like that. And maybe you are and it’s a misunderstanding but when you’ve got more information about it, you might be able to adjust what you’re doing a little or maybe you’ll learn how to express yourself more clearly in a way that makes it clear that you’re not giving a sob story or whatever. Maybe start writing them down to see if there’s a pattern or similarities so you can see if that’s how you really are coming across to people. 

    How long ago was it when you got diagnosed? 

    So remember, most people definitely do not understand very much about autism but if we keep calm and strong, we can do our bit to spread awareness by talking about it to people who are interested to understand more. And of course, we are each the face of autism in a way, how we behave and what we say etc will inform people of what autism is like and we can deepen their understanding by talking to them about how we experience it from the inside and as it relates to us, individually, because of course, we are all different. 

    I found that once I accepted the reality of the fact that most people don’t understand very much about autism, I stopped getting upset because I was no longer expecting them to understand it and I was able to start helping people understand it better by talking to them about it.

    Before I got my diagnosis I had never researched autism like I did when I suspected I had it, so I’m guessing that most people out there aren’t going to be spending their time learning all about it, unless it effects their lives in some ways. So just be gentle with people, be kind and patient and some of the people will be open enough to want to hear more and learn more about it and you can have some really great discussions that leave you and the other person feeling great.

    Whenever we try to defend ourselves, we will never feel great and neither will the other person. Good luck 

  • It’s not embarrassing. Why would you know anything about autism? 

    Do you know anything about making space rockets? If not, do you feel embarrassed about that as well?

    There are billions upon billions of things we know nothing about and never will so feeling embarrassed about not knowing something is a harsh judgement because we could never know everything about everything. It makes life much more pleasant when we are kind to ourselves instead of judging ourselves so harshly. 

    I was just asking because I was curious as to why you judge none autistic people so harshly for not understanding all about autism. I thought it was because even prior to getting diagnosed, you had taken the time to learn all about and understand autism and to therefore know how to respond and support autistic people if you were to ever meet one. I thought you must have always been super in the ball with understanding all about autism. 

  • The statement that "Everyone's on the Spectrum Somewhere" is just plain ignorant & about as nonsensical as saying everyone is a little bit pregnant.

    The fact that there is so much variation within the Spectrum doesn't help though, since it is much easier for some to cope than others. This can lead less enlightened people outside the Spectrum to believe that those who are strugggling are just not trying hard enough, which is again just plain ignorance.

    I am saddened that someone else on the Spectrum would have so little understanding, but I suppose he is probably so much in denial about himself that he is prepared to attack his own community in order to believe he is 'Normal'.

    I wasn't diagnosed until very late, only a couple of years ago at age 55. I always knew that I was different & learned to over compensate in order to blend in better. I had always felt that "I was on the edge of the group" & lived in constant fear that I would be found out somehow, even though I didn't know why I felt that way.

    If I had been diagnosed in childhood, it would have made my life so much simpler as I wouldn't have constantly beaten myself up so much for being different. I wouldn't have made so many terrible decisions in vain attempts to gain acceptance either, or at least not as many. Sadly, it's impossible to turn the clock back though & thinking about it too much is the road to madness.

    I have many good friends who reacted positively when I had my diagnosis & previously had just thought I was a bit eccentric. Your flatmate's comments sound quite insulting, so unless you particularly value his/her presence in your life, I would find a more enlightened flatmate.

    For a Nurse to say "Your Autism isn't as bad as some people's" is completely unprofessional & the sort of spurious logic that parents often use on small children. Having said that though, my Mum still regularly tries to use similar logic on me when my depression worsens, to which I always reply "I can't feel better thinking about other people's misery & would have to be a fairly horrible person if I could".

    It isn't so much that no-one understands, rather that there is a lot of ignorance out there. I know it's difficult & far easier said than done, but where possible try to associate with more positive people & don't allow the comments of ignorant Daily Mail readers to get you down.

    I really hope things improve for you soon.

  • If I had been diagnosed in childhood, it would have made my life so much simpler as I wouldn't have constantly beaten myself up so much for being different. I wouldn't have made so many terrible decisions in vain attempts to gain acceptance either, or at least not as many.

    Are you sure about that? I’m around the same age as you and I know that when I was at school, my school had little to no awareness of autism as far as I know and the kids with disabilities were all sent away to special schools and I don’t think they were that brilliant at the time.