Does anyone else hate it when people say "everyone's 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 think we sometimes forget what a 'young' syndrome autism is and the perception of it is constantly changing as a result of  research.  Until the 1960s it was linked with schizophrenia and until comparatively recently it was believed  that women were not affected by Asperger's Syndrome.  Even today you can find professionals on the web who believe that there is no such thing as adult autism.

People like Longman and me had no choice but to 'cope' and I think that was probably true of Scorpion also (although I'm struggling to do the math here!).

All my life I've had:

(1) OCD.  I can control it now to the extent that I only need three hours from waking until leaving the house and one hour to prepare for bed.  When I worked I had  to allow for all the time spent checking my work but now I'm retired I'm free from that worry.

(2) Problems going out.  I'm always uneasy away from home and the stress increases the longer and further away I am.  Again, retiring from work was an enormous help and I now aim to avoid unncessary time away from hom. 

(3) Socializing.  I'm uncomfortable socializing with more than three other people and happiest one to one.  When I can't avoid it I take a deep breath and go but the stress before and during event is only compensated for by the sheer joy when I wake up next morning and realise it's all over.

When people say "I'm a bit like that" or "I know people who are like that" it's may correct - it's simply that they haven't ever been diagnosed.  On  the other hand, maybe all three of my difficulties are experienced by people not on the spectrum and the difference is in the severity of the problem. Maybe it's the same with bi-polar; many people experience mood swings but it's the severity of those swings which warrant a diagnosis.

 To me, though, as someone non-scientific, the idea of an autistic spectrum makes sense, since I visualize a bridge with people at different stages along that bridge according to the severity of their own individual problems.  Am I being too simplistic?

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!.

I agree with Longman about the 'multiple spectra' idea. Although I don't come across as obviously autistic (which might explain why it took me so long to get a diagnosis), I do consider myself to be quite badly disabled. In other words, although I have learnt to make eye contact in certain situations; put on a cheerful and polite persona; do not speak in a monotone or have any obvious mannerisms, I am very badly affected by the obsessive side of autism; struggle with spontaneous empathy; am extemely egocentric and pedantic; struggle with practical skills and budgeting; and have disabling co-existing OCD and anxieties - almost certainly a product of my particular form of Aspergers. Because of this, I cannot maintain mainstream, full time employment (despite having obtained a 2.1 history degree from my local uni), have no reasonable prospect of developing a relationship any time soon (friendships are hard enough!), and rely on my parents and support workers for basic things.

However, I know people who come across as very obviously Aspergic, but appear to be coping very well. One guy speaks in a monotone, and has obvious communication difficulties, but he has a full time job,  and can travel freely (including abroad). Another guy, who was diagnosed as child, now has a full time job, can travel long distances on his own, and has no OCD etc.  So I can see how the symptoms of Aspergers interrelate with other symptoms or factors, and so the mono spectrum idea is indeed too simplistic.

AS is a label. But it becomes somewhat redundent if it includes NT at the far end of the spectrum.

It is like saying 'evryone is NT to some degree'. It makes the label not very useful.

In an ideal world everyone would be just accpeted and understood for their own unique personality. However the world prefers generalisations and categories. Bluring these categories makes things a bit too complicated.

I think many NT's just don't get it - even some who work with AS people. They can't help but slip ino thinking that you think the same way. For example I hate it when NT's tell you things like:

'you can do that' (without telling you how).

'I feel like that too - so does everyone'. (thinking that will make you feel OK).

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

'the more you do it, the easier it will be'. (without considering your abilities and difficulties. A bit like trying to make someone in a wheelchair walk).

I didn't assert you weren't on the spectrum if you didn't merit intervention, but I did suggest that's how the outside world, and healtrh professionals in particular, perceive it.

Spectral implies a continuum with more or less the same rate of change, although the electromagnetic spectrum is usually presented in a logarithmic scale in order to get it on one piece of paper.

You cannot impose such a simplistic scale on something so complex as autism. The environmental sensitivity, poor eye contact, narrow processing bandwidth that possibly causes meltdowns, organisational and behavioural traits, etc etc are not isolated parameters. They interact with each other to create further difficulties. Also people on the spectrum have differing degrees of any one attribute - that I suggest means multiple spectra.

I've worked with people who are to all outward evidence just like anyone else around them, who are severely constrained by their autism, it just doesn't show on the surface. I've worked with people with very conspicuous mannerisms, poor eye contact and motor control problems who yet are astonishingly well adapted to living in society - behind the facade or image it creates, they actually aren't that disabled.

The spectrum is a nice idea but too simplistic.

As you've said yourself you struggled for years believing everyone else struggled as well and only realised there was a difference when you got diagnosed. You could identify you were on a spectrum before diagnosis, but if no-one noticed and helped before it would seem the spectrum wasn't doing you any favours.

Also, and from my own experience, if I had been identified in the 1950s or early 1960s (and I was in fact investigated in 1959 but my parents, having a medical background, insisted on DIY) I would probably have been sectioned, taken out of mainstream education and institutionalised. A lot of people were. If I had been identified later in the 60s I'd have been put on psychotic drugs that would have greatly changed my personality for the worse. I wasn't living in the London area or any of those locations where early recognition led to some sort of special school. Obvious odd-balls got medicated in the 60s.

Where's you spectrum there? Its no use talking past tense. The spectrum is a current, inappropriate buzz word for something much more complex and much harder to define.

Using spectrum as a definitive term is not helping a lot of people.

I'm very uneasy with the idea that there is a clear demarcation point.

And I believe the differences and difficulties we experience are differences of degree, not of nature.

That is the degree to which environmental factors affect us is what marks us out as 'different', not the nature of our being affected.

I am also very uneasy with this idea that if you don't qualify for intervention you can not claim to be on the spectrum.

That would mean that for the best part of 40 years I was not on the spectrum. Because I coped with life. I did ok at school. I went to University. I got a degree. I found a job.

Does any of that mean I did not struggle? That I did not have problems? That my life would not have been greatly improved with a little appropriate help?

Does any of it mean I was not Autistic?!

No. No it does not.

I've struggled every day of my life. I just didn't know that I was any different to anyone else. I believed that everyone else struggled as well, and just somehow managed to cope.

It was only when I reached a point where I absolutely needed help from the medical profession (because of health reasons) that it became apparent to those around me that I needed support. That 'something was up'.

If we ignore the 'spectral' nature of Autism, and how it fits within a wider spectrum of human psycho-physiology, then we impose a life of struggle, loneliness, depression, and despair, upon those that do not fall the right side of our abitrary demarcation points.

Think I understand about the aspects of daily life being compromised Longman, though I cannot put it into words. Get really quite cross when I'm told that "everyone has problems" - yes we all do and we all deal with them as best as we can. But autism is one big problem to add to them all... I am autistic and I am right now struggling with it all - I'm also struggling to help my autistic son make sense of the big scary world. But.... although I have many, many wobbles I am sure that being autistic is a gift and when I accept it I will be so very glad that I wasn't born "normal" - acceptance is everything x

Indeed I can see Scorpion0x17's argument in favour of "spectrum" and "continuum" but I do feel these concepts are too nebulous.

While having varying degrees of individual parameters - fine and coarse motor control, organisation, behaviours, eye contact, sensory and environmental difficulties etc., I don't think you can read that off against a scale - such as "spectrum" would imply. I don't think you could, as spectrum might be expected to allow, say someone is a grade 9, another person is a grade 15 etc.

All these characteristics are interrelated in complex ways. Sensory issues may be a factor in eye contact. Organisational rigidity and routine may evolve from a need for a safe environment in a world of difficult sensory experience. How far are these aspects of Autism  "nature" and how far "nurture".

Evidently this is something likely to be fiercely defended by some, especially if loss of the term spectrum would deprive a reference point.

But I do think, to use a metaphor, spectrum has become "a rod for our own backs".

To the public, to government, to a lot of health workers, the dividing line is whether you qualify for intervention and/or financial support. If you don't - to many "gatekeepers" spectrum has no significance.

Claiming to be on the spectrum, if you don't qualify for intervention, is meaningless.

Which is awkward if you are one of those able to manage daily, and able to earn, and not in need of intervention (or have been in the past but now supposedly cured by medication) but nevertheless suffer daily from social interaction and sensory problems that feel real enough.

I think we need far more concrete descriptors.

I can see both sides to an extent, but I veer more towards the argument that says autism and Aspergers are categorical diagnoses that clearly seperate out a defined condition from the merely introverted or socially awkward personality spectrum. And while I accept that the autism spectrum does overlap to an extent with the socially awkward and introverted spectrum,and aspergers and the higher functioning forms of autism can justifiably be interpreted as merely an exaggerated form of a normal personality spectrum, I am very uneasy with the idea that there is no clear demarcation point.

People with Aspergers, however able they are, by nature still have neurological differences that are far more profound than mere introversion or social awkwardness. They often have motor difficulties; problems with planning and organisation; repetitive and OCD like behaviours; sensory disturbances; chronic anxiety; uneven skill profiles; and other disabilities that suggest neurological malfunction or difference. The condition has to cause significant impairment in order for it to be diagnostic; and the problem with watering down the condition into something that all of us experience to a degree, is that the seriousness of Aspergers can be undermined. Far from increasing acceptance, this can actually lead to increased discrimination as our needs can be overlooked with the retort that we should simply try harder.

Sorry, Longman, but I entirely and absolutely disagree.

I have Asperger's. That puts me at the 'higher functioning' end of the spectrum. In fact I went nearly 40 years of my life being undiagnosed. In fact not even realising I was any different to anyone else.

But, I know people, like the son of one of the organisers of my local NAS branch, who are clearly and obviously autistic. He is almost non-verbal. And is most definitely not 'high-functioning'.

I have also seen people with even more sever autism than him. People who are entirely non-verbal. Who rock and hit there heads when they go into a new, stressful environment.

So there is clear spectrum of difficulty within the autistic community itself.

I also know many people that show autistic traits, but would never be diagnosed as autistic, not because those traits do not cause them problems, but because they're either isolated traits, or are extremely mild in there presentation.

And so I see a clear spectrum of autistic traits outside the autistic community as well.

Now, where my analogy does break down is in the sense that light is mono-dimensional spectrum, whereas autism, and the wider spectrum of human psycho-physiology, is clearly multi-dimensional.

But that doesn't stop it from being a continuum.

Sorry but that's not an accurate representation of autism. You can define light by means of its spectral differences, so its a progression across a scale or a continuum. But the distinction is not degree of disability, and the fact that certain parts of the spectrum are intercepted by water vapour is about their specific properties at that wavelength, nothing to do with a continuum (I've spent much of my life working with sensors and the relationship of the spectrum to natural life and I used it a lot in my teaching).

"Continuum" was a short sighted analogy picked on by scientists to describe the wide variation in manifestation and severity of autism. But it is only a "continuum" if it does define the varying degrees of severity, and I don't think it does.

What it is doing, to our great disadvantage, is diluting public perception of autism. Because everyone can identify they are somewhere on this spectrum, they perceive that, while some people are way up the spectrum, and therefore disabled, there are a lot of people who seem to be only a lttle higher up the spectrum who could do more to help themselves, and therefore aren't worth sympathy. Why cannot these lower-down-the-spectrum people get off their backsides, stop moping and do something about their lot, and they could then move down the spectrum and be like the mass of ordinary people. The idea of a continuum weakens the sense of disability.

Human behaviour involves complex interrelationships. One of the adverse effects of Autism is that it compromises an individual's ability to interact within these complex interrelationships. So what has that got to do with a continuum!!?

I'm inclined to liken this to a food web (ecosystems lectures being part of my livelihood until recent retirement - so bear with this a moment). Food webs show us who eats whom, in the natural world. About twenty years ago they found a miracle pesticide that killed off several major crop pests, but it also killed off a spider that was consuming other crop pests. These pests multiplied without their main predator keeping down numbers, and they weren't affected by the new pesticide, so farmers ended up just as badly off.

Autism involves complex interdependencies. Let's take just one - eye contact. It affects most of us. To scientists its just one parameter on the spectrum, and when someone appears to have OK eye contact, it is assumed that they've been largely cured of autism, or so it seemed during the first phase of disability support reviews).

The scientists looked for gaze aversion, visibly avoiding eye contact, as their parameter. But many adults on the spectrum, probably as a response to being constantly criticised for not paying attention, find a way of looking in the general direction of the face, which gets NTs to shut up.

But the real issue about eye contact is we miss out on a lot of visual based exchanges in social communication. So we need to compensate for this information loss.

Either because of motor control issues, or lack of practice (or a lot of other interrelated factors) we are often bad at generating those visual signals for others to read.

So our social interaction is poor, and this has "knock on" effects on many aspects of human social living - in the workplace, in education, in the home, at recreation, etc etc.

We might be able to compensate, but the loss of the visual stimuli has pretty drastic implications. That's not a continuum. That's a complex web of interconnections in which we are under-effective participants.

Some people can compensate by being good actors, and guessing what is needed to make up for the visual ground. But only a few can do that and, to know how to act you need to know what you are missing.

Some people can make up for poor direct person to person communication by being writers, but a lot of people on the spectrum have dyslexia on top of their autism. Also rigidity of thinking, which is partly conditioned by lack of social interaction, affects how we write.

The "continuum" concept is irrelevant. It was a clever buzz word coined by scientists. It is doing us nothing but harm persisting in comparing autism to a contnuum or spectrum. It is not an accurate representation.

In a sense saying "everyone is on the spectrum" is correct.

And in a sense saying "everyone is on the spectrum" is also incorrect.

It really is a matter of how you define 'the spectrum'.

Let's look at another type of spectrum, and see if we can draw an analogy that might illuminate things a little.

It's a spectrum we're all familiar with.

It is the spectrum that defines all we see.

It is the spectrum of visible light.

Now, it is clear, and obvious, that everything we see reflects light that is 'on the spectrum' of visible light, but that is only part of a much wider picture.

Visible light is just one small band of a much wider spectrum of electromagnetic radiation, that stretches out from one side of the visible light spectrum to cover infra-red (or 'heat'), microwaves, radio, and more, in one direction, and ultra-violet, x-rays, gamma-rays, and more, in the other.

So, just as the 'visible light' spectrum is part of a larger 'electromagetic spectrum', so it is that that 'autistic spectrum' is part of a much larger 'spectrum of human psycho-physiology'.

I've been thinking about this thread, while I've not been able to log on due to the red page warning about security certificates and all that, because it really is important we find an answer to this.

I venture this offering....

While its true there's a continuum of symptoms or manifestations of autism, and most people claim they can identify some, we also have to remember that human behaviours are fairly finite. Most aspects of human behaviour are defined by a few parameters, albeit there may be some minor aspects where you can go on into lots of detail.

So the more autism related problems you have, the fewer problems you don't have.

Someone might say they experience a few difficulties socialising, they're a bit OCD at times, they have a very specialised hobby and bore everyone with it. BUT, most of their social, sensory and organisational functions are OK, so they can make up for the defects fairly easily.

If you've got a lot of sensory issues, poor eye contact, clumsiness etc etc., you very quickly reach a point where you've no compensation options.

This continuum of characteristics is really misleading.

What makes autism an impediment to living and a disability its the degree to which your essential communication, sensory and organisational skills are compromised. Disability hits not far up the "continuum" after which its about degrees of disability.

So please can researchers stop using this continuum idea and look instead about loss of means of effective communication - what finite resources are left to an individual to compensate with.

The continuum idea is irrelevant. What matters is the point at which you become disabled on so many fronts, or with those who are abler, at what point do we become impeded significantly?

When most aspects of day to day living are compromised, you have very few reference points to "normality". Its about finite skills, abilities, responses being compromised .....this continuum thing is misleading, just a fancy created by nutty scientists.

oh well....you know what I mean....or maybe not.....