• Replies 59 replies
  • Subscribers 26 subscribers
  • Views 19104 views
  • Users 0 members are here
Options
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Does anyone else hate it when people say "everyone's on the spectrum"?

Liv

Hi everyone,

I've been feeling really low lately and something that hasn't helped is the subject matter of a class debate we had the other day. We began to talk about autism and Asperger's Syndrome, and this popular girl who has no communication or social difficulties whatsoever (in fact one of her many gifts is that she makes everyone love her) says, "Everyone's on the spectrum, it's just to what extent. My cousins are autistic, so I know." 

And...I know we're all entitled to our own opinions and beliefs. And it's not like that was the first time I had ever heard this theory, and to be quite honest, I'm not the most severely Asperger's person in the world. In fact, you'd probably say I had it quite mildly - particularly if you were an adult meeting me, as adults seem to bring out the best in me in a way that my peers can't. But when I saw her sitting there and just saying that, surrounded by all her friends kissing up to her and agreeing with her, whilst she'd just been going on about the party she was off to the next day, and the gig she was going to soon with another girl on our table, I just wanted to say, "OK. So you believe everyone's got autism. You try living a day in my life - seeing everyone make friends around you whilst you're left completely alone, no matter how hard you try. You try knowing you're different ever since you're old enough to think, and then tell me everyone's on the spectrum, because I think you might feel differently then. You've got no idea how lucky you are! I'd give anything to be accepted and supported by everyone like you are."

Now, I know she doesn't mean that everyone is autistic or AS to the point of diagnosis. She just means that we've all got little tendencies here and there. But, though I wouldn't say it to her or any of the kids at school as it makes me sound like I'm just making trouble or feeling sorry for myself or using any excuse to have a big, dramatic, overemotional reaction, I found it really difficult to hear that from her, and in my personal opinion it's actually quite an insensitive thing to say to/in front of someone with any form of autism. (She does know I have AS, and she says she believes it's true but I don't think she does - none of the others do.)

Am I being out of order? 

Thanks for reading, 

Liv x

  • Stonechat said:

    I suppose it depends on how the words  "Well, we are all on the spectrum" are being used.

    If it is a dismissal of a difficulty you are having and trying to point out to them, then that is bad. It would take someone with a certain mindset to use the words in that way  -  and I would say in some circumstances you would not gain anything by trying to argue your case with them. Some people just will not see.

    It all lies in understanding, and being bothered to understand.   

    Indeed.

    It is the mindset of those that use the words to dismiss us that needs to change not the words themselves.

  • I suppose it depends on how the words  "Well, we are all on the spectrum" are being used.

    If it is a dismissal of a difficulty you are having and trying to point out to them, then that is bad. It would take someone with a certain mindset to use the words in that way  -  and I would say in some circumstances you would not gain anything by trying to argue your case with them. Some people just will not see.

    It all lies in understanding, and being bothered to understand.   

  • Hi - saying we're all on the spectrum does "trivialise the difficulties we have" to quote stonechat.  There's a danger that autism won't be taken seriously with that sort of mindset + could even be used by the powerful in society to cut back on services, certain hard fought for rights, etc even more than they're presently doing.  At the same time everything in life is on some sort of spectrum so in another way I understand what they mean.  It can be useful to NTs as you can try to explain to them how strongly autism can affect a person. 

  • I've read through this thread with interest. I was diagnosed less than two weeks ago, but probably like most people diagnosed as adults, had realised what my 'difference' was before getting as far as the assessment.  Before that I was slotted into the box of middle-aged lady with 'anxiety' problems. The doctors refused to see past that even when I attended for physical problems. Basically I was in their 'Anxiety' box and probably destined to stay there forever. I was positive they had stuck me in the wrong box.

    Now I must say I am very happy to be in the Asperger's box - it explains me to me. Great! So why must the Asperger's be slotted into Mental Health? To me having an Asperger's diagnosis shows that I am not coming from the doctor's 'Mental Health Box'.  

    Then I experience as Liv does, the people who regard it as of no consequence - they too have apprehensions about the same things, or friends who do, so I must be putting-it-on. They regard my inability to do things as me making a fuss or just making excuses. In the past I have tried to explain, but have found it impossible to get past that barrier of disbelief.

    The truth is that no one knows what it is like from the inside unless you actually are an Aspie. Kind, thoughtful, interested people can listen and try to imagine and understand.  But I don't think there is anything one can do about people who perhaps are blinkered and do not even try to understand.

    If you are lucky you can walk away from them, though that is not always possible. A situation like that is really hard to deal with. True Colours uses very apt words in that it   "trivialises the difficulties we have".

     

  • Jon said:

    Just look at the way society looks at, and deals with, those it sees as being 'alien' - immigrants, gyspies, travellers, 'benefits scroungers', and, to a large extent, the physically disabled.

    These people really are discriminated against, on a daily basis.

    Is it not the case that wider society is wrong and not the 'gypsies and immigrants'?

    I agree that people who are seen as 'different' are often discriminated against. This seems to be deep rooted in society. Maybe it once had a primal function - its how we can now over ride this.....

    [/quote]

    Exactly.

    And so I don't think that marking ourselves out as different is going to do us any favours what-so-ever.

  • Hope said:

    I know there is something radically different in the way I experience the world, and this has led to a profound feeling of alienation. When I found out I have Aspergers, I could at a last conceptualise this difference as something physical and neurological - a concrete disability that sets me apart from the 'norm'. People without my condition, who have not gone through this feeling of radical disconnection and exclusion, should not make light of it by suggesting that we are all 'on the spectrum'.

    Different, yes.

    Radically different? I don't think so.

    Before I was diagnosed I read a lot about how the mind works, how we, as human being work, trying to work out how or why I seemed to be different to everybody else.

    Because I too had that profound feeling of alienation.

    But, the thing that I kept on hitting up against was that essentially I am no different, I just have some hightened senses, some damped down senses, I am more logical, I notice the details more than the larger picture, and I'm not so great at sociallising.

    In short, I do everything that NTs do, and NTs do everything I do, just to different extents. I am different, yes. But not abnormal.

    So, I think we are different by degree, not by nature.

  • longman said:

    Thanks Scorpion0x17, perhaps I could understand your perspective better if you could illustrate your perspective with how we are being treated at the moment.

    In response to the Government initiative "Leading Rewarding and Fulfilling Lives" the local authority I've just moved from read it as providing learning disability support for anyone with autism through their existing learning disability partnership board.

    The local authority I've just moved to doesn't even have autism on its website. It hasn't made a decision yet whether adult autism comes under learning disability or mental health. I think mental health runs it at the moment but its unclear.

    So if you feel what I'm saying will "further distance ourselves from society" and "only make our plight worse" could you make it clearer what you think will happen?

    My personal impression, for what its worth, is that saying everyone is on the spectrum is taken to mean its nothing special, and  merely underlines the popular perception of adult autism as immature over-sensitive people who cannot cope with the same circumstances as everyone else. And who therefore are delusional and must be seen as having a mental health problem.

    Well, for a start, I don't think that there is much, if any, link between the way the government initiative is being implemented and whether autism is considered part of a wider spectrum or not.

    But, let us for the moment assume that there is.

    The current state of affairs is far better than it used to be - it used to be that autism in adults wasn't even recognised. Nor was it even accepted that there were differing levels of impairment within the autistic population.

    So, things are moving in the right direction, if very slowly, and if there is a link between this movement and the perception of autism as part of a larger spectrum, that can only mean that that perception is a good thing.

    As for your last paragraph, I'm not sure about 'immature', but we certainly are, often, 'over sensitive', though also often 'under sensitive', and even 'normally sensitive'.

    What we need to break is the idea that we are 'delusional' and the perception that we have 'mental health problems'.

    I again don't think that distance ourselves from the society is likely to do anything to help in breaking those ideas and perceptions.

  • It is coming back to me that way, in discussions with agencies. Whether official or not, there seems to be a move afoot to appear politically correct by referring to autism across the board. We do tend to follow American leads here.

  • longman said:

    We have recently lost the term Asperger's Syndrome, because as I understand it, officially, the new label is "autism" across the "spectrum".

    So we've certainly lost the identity of Asperger's Syndrome. What we've got instead is somewhere on a spectrum everyone is on, but less than full autism.

    As I understand it - and I'm not a specialist - the 'loss' of the term Asperger Syndrome is proposed in the American Psychiatric Association's (APA) latest edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This is a pretty controversial document; the British Psychological Society has been expressing concern about it for a while. And just last week the National Institute of Mental Health (NIMH) withdrew support for DSM-5 in a fairly strong statement.

    Now the APA and the NIMH are both American organisations; diagnosis here in the UK and Europe doesn't follow it directly, although DSM has been influential on European diagnostic standards in the past. But it would, I think, be fair to say that DSM-5 is not enjoying the high degree of acceptance that its predecessors have had.

    I don't speak for the NAS here; I'm posting as someone with an interest in the field. But I'd like to try and reassure people, on my own account, that the Asperger Syndrome label is not being taken away by any central authority.

    Best wishes,

    Alex

  • Scorpion0x17 said:

    Just look at the way society looks at, and deals with, those it sees as being 'alien' - immigrants, gyspies, travellers, 'benefits scroungers', and, to a large extent, the physically disabled.

    These people really are discriminated against, on a daily basis.

    Is it not the case that wider society is wrong and not the 'gypsies and immigrants'?

    I agree that people who are seen as 'different' are often discriminated against. This seems to be deep rooted in society. Maybe it once had a primal function - its how we can now over ride this.....

  • We have recently lost the term Asperger's Syndrome, because as I understand it, officially, the new label is "autism" across the "spectrum".

    So we've certainly lost the identity of Asperger's Syndrome. What we've got instead is somewhere on a spectrum everyone is on, but less than full autism.

    That doesn't give me much comfort for my own struggles with life. 

  • I know there is something radically different in the way I experience the world, and this has led to a profound feeling of alienation. When I found out I have Aspergers, I could at a last conceptualise this difference as something physical and neurological - a concrete disability that sets me apart from the 'norm'. People without my condition, who have not gone through this feeling of radical disconnection and exclusion, should not make light of it by suggesting that we are all 'on the spectrum'.

  • Thanks Scorpion0x17, perhaps I could understand your perspective better if you could illustrate your perspective with how we are being treated at the moment.

    In response to the Government initiative "Leading Rewarding and Fulfilling Lives" the local authority I've just moved from read it as providing learning disability support for anyone with autism through their existing learning disability partnership board.

    The local authority I've just moved to doesn't even have autism on its website. It hasn't made a decision yet whether adult autism comes under learning disability or mental health. I think mental health runs it at the moment but its unclear.

    So if you feel what I'm saying will "further distance ourselves from society" and "only make our plight worse" could you make it clearer what you think will happen?

    My personal impression, for what its worth, is that saying everyone is on the spectrum is taken to mean its nothing special, and  merely underlines the popular perception of adult autism as immature over-sensitive people who cannot cope with the same circumstances as everyone else. And who therefore are delusional and must be seen as having a mental health problem.

  • Longman, whilst I can understand your point of view, I think that setting ourselves apart from the rest of society is more likely to do harm in the long run than not.

    Just look at the way society looks at, and deals with, those it sees as being 'alien' - immigrants, gyspies, travellers, 'benefits scroungers', and, to a large extent, the physically disabled.

    These people really are discriminated against, on a daily basis.

    We already have people on the spectrum being bullied, killed, and forced to commit suicide.

    Is further distancing ourselves from society really going to make that less likely to happen?

    I think it is not.

    If anything it will, in my opinion, only make our plight worse.

  • I've heard "spectrum" used in a similarly derogatory fashion.

    It is now unlawful(? - or just 'not done these days') to use disability references as a casual insult. But "spectrum" can be used because, by definition, everyone is on this spectrum, and it just means weird or eccentric. Saying someone is on the spectrum in a reference, probably wouldn't constitute misconduct.

    So, I guess, its quite OK for a woman to use "spectrum" as a derogatory reference to all men (possibly she's had bad experiences), but she would be frowned upon if she used "autistic".

    As I say, the use of the term "spectrum" has become "a rod for our own backs". It doesn't define the impact of the disability because it is a vague generalistic term that suits scientists.

    Part of the problem lies in the emphasis on finding a cure rather than addressing and improving lifestyles for those on the spectrum. Finding a cure gets in money. Improved lifestyle doesn't. The research centre or company that comes up with a cure for autism will make billions of pounds for themselves and their backers. Those who do something to improve lifestyle will struggle on low funds and obscurity. Making peoples lives better is "small beer" (cute metaphor for the watered down variety).

    We've ended up with a culture that believes that so much therapy or medication will cure, or that somehow with many hours of Social Stories you'll "grow out of it". Or that if you try harder and copy a few things NTs do, somehow you'll wake up one morning and find it was all a bad dream.

    Until scientists take autism seriously there will be little progress. So lets review what calling it a "spectrum" is doing to help or hinder progress.

  • I work with an obnoxious woman who claims "all men are on the spectrum, all men are weird". I find it particulary annoying as her daughter has cerebral palsy and she should know better.

  • Jon said:

    'you seem to be coping now' (without understanding the influence of circumstance).

    In my case, it's because I have no choice. I either have to force myself to manage, or have a meltdown in public. Have had the latter once and it was embarrassing and something I don't want again.

    I had someone tell me it can't be that bad because I appear to be coping - yes, because I have no choice. Doesn't mean there's not an issue.

  • I really don't see the problem with acknowledging that autism is a spectrum, multi-faceted, multi-dimensional, multi-whatever-term-you-want-use, yes, but that doesn't stop it being a spectrum.

    Spectrums don't have to be mono-dimensional.

    I also don't see how setting ourselves apart and saying "you don't and can not understand" helps anyone (either others in supporting us, or us in getting support from others).

  • There has been a similar debate with regards to bipolar recently. Before the 1980s, it was called 'manic depression', which has a weightier tone to it. Nowadays, many people claim the 'bipolar' label; it has almost become a lifestyle term - everyone can argue that they are on the 'bipolar spectrum', as we all go up and down now and again in our moods.

     

  • I agree Jon. Relativising my difficulties by suggesting that the person in question understands, for example when they say, ''I think we all struggle with making friends from time to time'', is completely beside the point. It is actually offensive. It is like saying that you understand what it is like to have chronic fatigue, to someone with the condition, because on bad days you feel tired!.

    • 1 2 3