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?

  • Firstly I want to say that I feel for you - i.e. you are being treated badly & not being respected, and that's bad.

    [Edit - I've just noticed that the original post was 7 months ago so my reply is hugely late & things have possibly moved on, but I'll leave this here in case it benefits someone.]

    I read your post last night and didn't know how to respond to the points raised, but I want to have a go now by offering some things that I've learned along my recent journey through diagnosis.

    • When people have known you from a time before you knew or suspected you are autistic, they knew the "masking you". They seem to struggle to understand why, if you "seemed OK" before, you can't carry on exactly the same and all this new talk of autism seems to them like looking for excuses. They don't know about the link between masking and negative impacts on your mental health for instance.
    • Many individual features of autism can be displayed by people without autism; it's having a set of features *together* in the same individual that is used to diagnose autism, and this can lead to the view that "everyone's a little autistic". The truth is more like "many people can relate to *some* of the signs of autism" but the subtle difference is lost on those who haven't thought long and hard about it (us, and autism clinicians and researchers!). For example, intolerance of loud noises can be caused by hearing problems or simple ageing. The ability to focus is a common trait. Preference for routines too. None on their own indicates autism necessarily, but taken together they probably do if the "alternative causes" are ruled out.
    • People without autism take in their stride things that autistic people struggle with, and they often struggle to imagine what it's like to have to deal with sensory processing differences, the stress induced by even the suggestion of changes to routine etc. In other words, they lack the ability to empathise with autistic people.

    I also know that it is really bad behaviour (and philosophically difficult!) to tell someone that they are mis-reporting their feelings; how on earth can they *know* what you feel, or how something affects you?

    Like others have said, would anyone tell a wheelchair user that they are making a meal of it & maybe would feel better if they got over themselves & took up running? No. Would anyone tell someone recently diagnosed late in life with wheat intolerance that maybe if they bucked up a bit they could try a bit of wheat? Or someone who's developed a nut allergy that they should stop being so fussy about things that might contain nuts? No.

    I hope that some of this makes sense and allows you to win these people round, or at least feel more sure about your correctness if not.

  • 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.

  • 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.