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?

Parents
  • 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.

Reply
  • 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.

Children
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