Published on 12, July, 2020
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
Throughout these differing viewpoints I see an agreement that within AS we all experience different degrees of difficulty, though in pretty much the same areas.
The degree of difficulty does depend a lot on what is happening in our lives, what stressors we are exposed to and the severity of those stressors - but underlying all of the 'reactions' we display, are the same types of sensitivity and social difficulties. As I understand it our brains are made differently - with many more connections than an NT brain.
So there is a fundamental difference there, which does make our brains operate in a different way to an NT brain. Whilst the outward appearence is that we are operating by different degrees to them - ie in our reactions to outside stimuli - the inside truth is that we are made differently, so surely cannot 'revert' to an NT way of thinking.
The NT assertion that "everyone feels like that sometimes" is them making the assumption that they are constructed and operate in the same way as us. So I guess more education is needed for people with NT brains to understand this is not so.
When I first raised my concerns that I thought I had AS with my family members and my (then) boyfriend I was met on all sides by "everyone feels like that sometimes". I think the difference for us with AS or HFA is we feel this way all the time rather than just "sometimes" (e.g. social anxieties and aloneness to name two).
It was very frustrating at the time, but I found getting a formal diagnosis was a validation of my concerns.
longman said:Scorpion0x17 may be right from his perception that he is different by degree not by nature. Personally I am more inclined to True Colors view of things, as I do feel radically different, even if in a milder form than most.Maybe I need to revisit my view of the spectrum by saying that relating to the spectrum works for some, but I think it neither helps nor defines many others.
Maybe I need to revisit my view of the spectrum by saying that relating to the spectrum works for some, but I think it neither helps nor defines many others.
I think you and True have missed a key point in my post(s).
That is that I used to think the same - that I, and the way I think, is radically different to the way NTs think.
It was only through trying to answer the question of why I felt that way, by reading up on psychology and the way the human brain functions, that I realised that the differences between the way my brain functions and the neurotypical brain functions was not down to it's nature but the degree to which particular circuits and sub-circuits with the brain function.
A very poor analogy is that of computers (and, no, I'm not going to repeat the oft quoted, and I think very inaccurate, though sometimes usefull shorthand, idea that the NT brain multi-tasks, and the Autistic brain doesn't) - all, modern computers, no matter what their make or model are all essentially the same, they all use silicon transistors, which all work in the same way, and all use binary logic to achieve their programming. However, an Apple Mac is a very different beast to a PC, and even within each of those groups, Mac and PC, you have very wide range of degrees of functionality determined by the speed, power, and functionality of the components from which they are built. Fundementally, by nature, they are the same, but they differ greatly, by degree, in what they can do.
So, as I understand it, it is with NT and Autstic brains, fundamentally they are the same, they have the same basic components, and use the same basic logic, but the speed, power, and functionality of the circuits with the brains differ greatly.
That is, and is what I mean by, a difference of degree, not of nature.
I hope further Neurological studies may provide a clearer understanding of the nature of Asperger's - then I can actualy tell poeple 'why'.
The manifestations of autism are very varied. This is partly because there are a number of ways we can be affected, and everyone seems to have a different mix of these components. Some are more environmentally sensitive, some have more marked executive function issues, some have more marked motor control issues.
Moreover these components interact. They affect each other. And most people have one or more comorbid condition such as OCD, dyslexia, ADHD.
And then on top of that there is personality - the characteristics of an individual, aside from those down to autism, which affect the way the autism acts on an individual. This particularly shows in the degree to which people on the spectrum need support or strive to be independent.
As someone diagnosed at the manageable end of Aspergers Syndrome, I'm conscious I may have perceptions that don't apply to others, because maybe I'm having it easier, and maybe there's symptoms I don't have to as great a degree as I think I do.
But I think it is likely that some people experience a very real sense of difference from NTs because that's probably the case. While others may perceive themselves removed from NTs by degrees, because it is easier for those people to see their autism as just more limiting versions of problems NTs experience.
Scorpion0x17 may be right from his perception that he is different by degree not by nature. Personally I am more inclined to True Colors view of things, as I do feel radically different, even if in a milder form than most.
Scorpion0x17 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'.
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. [/quote]
That may be the case for you, Scorpion but before I ever heard of AS I knew there was something radically different about the way I experience the world - something I share, to a greater or lesser extent with other people who have Asperger's but not with NTs. At times it hasn't been difficult for me to believe that we are indeed on the 'wrong planet'.
I just don't believe that I am different from NTs by degree - rather that I have physical and neurological differences which, hopefully, will one day show up in a brain scan an clarify the situation.
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.
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.
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".
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'.
Hope, I've had the same experience. I always knew I was different before I'd ever even heard of Aspergers. I not only felt alienated but also scared - believing that if I ever spoke about my problems I would be considered mentally unstable. In my opinion saying "we're all on the spectrum" trivialises the difficulties we have.
longman said: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.
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, you've put into words exactly what I believe.
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.
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.....
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Exactly.
And so I don't think that marking ourselves out as different is going to do us any favours what-so-ever.
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.
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?
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.
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.
That doesn't give me much comfort for my own struggles with life.