The Spectrum Concept

I'm ok with it. It is a way of expressing the idea that there may be any level and combination of gifts and difficulties under one umbrella, if that is not mixing metaphors

Trainspotter said:

In the.days.of.apartheid in South Africa, there were.three classes of race. Black, white and coloured,coloured.being a mixed race.South African (Basil Dolivera being one such).

The story went, which may.be apochryphal, that Chinese were classed.as.'Black' but as there was a lot of trade.with Japan, the Japanese were classed.as 'Honorary Whites' !

Yeah, from what I see it pretty much is still the same in SA. "Cape coloureds" (that's what they are referred to by the Bantu majority and most of SA) are a group that have been marginalised considerably since the end of Apartheid. The Bantu aren't particularly fond of their mixed heritage.

The Japanese were isolatonalist to the extreme, so I don't imagine they really gave much mind to whether they were honorary anything!

Hi Xanadu,

Long time no see.

Reading through you seem to have accepted spectrum! I just think if the name keeps changing it will throw things into a muddle. If we change the name on a whim it will throw out everyone who has a grasp of the current definition. Since I've been diagnosed the goalposts keep moving. Dealing with all the red tape we all have to cut through like psychiatrists, GP's, the education system, the welfare system, and the general public, I think most of us know that they don't have much of a clue. I'm good with spectrum because it does give a good indication of the large area Autism encapsulates.

Xanadu said:

I was married to a Jamaican man for 10 years

Lol, that's pretty weird. I was in my longest relationship with a Jamaican girl for about a decade myself. Her mom was Afro-Panamanian but raised in the mountains near Portland. I think you and I have had a pretty much similar experience. I was pretty much "in my own world" in nursery and my best friend had just came over from Jamaica. The school sat us together because they couldn't understand him and I wouldn't stop talking and singing, albiet pretty much nonsensical stuff. I was pretty advanced with my work though and the teachers didn't really give him much time. I think they couldn't understand either of us! We sort of bounced off one another and were each others "translators". I got better at interacting and he got better with work and speaking with the teachers. Yeah, Patwa is basically English but his family are from Clarendon, if you've ever met anyone from that Parish, you'll know it's real country, probably the fastest and thickest accent on the island. Looking back the teachers were real lazy! It worked out well for both of us anyway. That's my oldest friend and we are still best friends. His mom and my mom are real close too. I can understand Patwa and speak it, although I don't, very rarely, lol. Just for a laugh when the time is right!

I'm detracting from the thread here but I'd like to speak about the whole black "spectrum" thing. It's sort of weird for me to just say black people are all the same. Especially seeing the stuff I have and still do. From what I see there are lines of difference. Even in an area like the Carribean. You must have heard the "small island" thing that Jamaicans call the people from places like St. Kitts and Nevis. Nigerians also seem to have a load of insults for Carribean people at times. I don't think that they all lump each other in together, sometimes it gets pretty bad! Putting it into perspective though calling a Bajan the same as a Kenyan is like saying a Finnish person is the same as a Spaniard. I've seen some crazy stuff though, there was a Bajan kid growing up who's dad would beat him if he'd been hanging around with Jamaicans. He said they were bad kids without knowing them!

Someone really helped me with the spectrum idea yesterday on an autistic mums group.  I was taking the meaning in the Oxford dictionary and applying that far too literally.  

She sent me a link to a comic strip explaining it.  Which helped.

Though it helped it also made it very clear that Autism itself is not a spectrum - rather it is an umbrella term for lots of common elements or spectrums inside that umbrella  so for example sensory processing, language, executive function etc.  These individual elements can all be placed on a spectrum in the true sense.  The combined points on the spectrum that we each are in this area though, cannot be reliably placed on a stand alone Autistic Spectrum because each will be at odds with each other and well frankly in the case of myself I'd be all over that spectrum like a spider on acid looooooooool x

Autism is a collection of spectrums! -  just not a single spectrum, rather an umbrella term for a collection of commonly associated "difficulties"  which  each are spectrums in their own right  - I have concluded !  As a result, none of us can be plotted reliably on a stand alone autistic spectrum.

So for me, I shall refer to it as a term for a cluster of spectrums and I think that might help other people understand it a bit more.  Maybe or maybe it will make them understand it even less looool x

I think it's useful as a way of explaining to other people that there are wide variations and that all autistic people are different.  I don't think of it as a rainbow but more like a huge circle of colours, concentrically arranged. 

The term spectrum is fine but I would substitute ‘Disorder’ with ‘Condition.’ 

See now you are thinking along the same lines as myself but articulating it much better than I have - I was looking for a word and yes category does fit !!  I was looking I think for a more complicated word because this is what I do "over complicate" and also I "over think" . . .   I don't think NT can understand me any more than I can understand why they need to fill silence with 'weather talk' or why they ask you how you are, when they a) do not care and b) do not really want to know.  It is an exchange of pleasantries before they get to what they really want and I don't understand the need for it.  I suspect never the twain shall meet 

That said thinking of who I am as point in between two extremes will not get them any warmer to what I am whatsoever!  Still it is far better than them doing the old "I knew someone once who was autistic and you are so different" - Gently gently on the understanding for the NT folk I guess . . .   Let's not overcomplicate for them when we've come so far  xx

Plastic said:

I think you're looking at it from the bottom up

Very likely 

Anyway the truth is that the spectrum thing is probably more helpful to create a picture in the NT mind than unhelpful!  

I am all over that spectrum though myself . . .  and I have a deep seated need for accurate classification!  Which I am satisfied that describing us as 'spectrum' or at least me anyway (I should speak for myself) is not strictly speaking accurate.  But who cares I guess - only a little oddball like myself  loool x

I think you're looking at it from the bottom up. Most NTs will never knowingly meet an autie in everyday life. They may know one via a friend - someone's brother etc. They will make their entire model of autistic people from that one meeting. When they meet a second one who is radically different from the first, they will question and modify that model of autistic people. They will see a spectrum of abilities (as measured by NTs).

It's only really healthcare professionals who get to see the full variety of different autistic people on a regular basis so they will see the complete range from the highest to the lowest functioning.

Xanadu said:

Also truly are we on a spectrum at all in the true meaning of the word spectrum?

used to classify something in terms of its position on a scale between two extreme points

The implication that it is simply a line from mild to severe can do more harm than good, IMHO. There is a variation in language skills, variation in sensory differences, variation in social comprehension, variation in executive function differences, and so on, to any degree of separating one ability from another (e.g. semantic language skills vs. pragmatic language skills, spoken vs. written language skills.) If it were a simple spectrum, then the gradation would apply across all of these areas in equal proportion, but it quite obviously doesn't. This simplification is dangerous; it is why those of us with good functional language skills are so often assumed to have little impairment in other, less easily observed, areas, for example. Nor are functional differences consistent; my functional language skills can be just dandy until I find myself in a particularly stressful situation, or need to combine them with pragmatic language skills; during an extreme period of burn-out, I can lose these skills completely, to the point of complete receptive and productive aphasia.

As the old saying goes; "A little learning can be a dangerous thing." If taken too literally, the "spectrum" analogy can be as much of a misconception as many of the misconceptions it aims to disabuse people of. The "everyone is on the spectrum" attitude, which would be true if the analogy was accurate, leads to a kind of false empathy for autistic people; the idea that people can understand us by extrapolating from their own experiences, or from what they have learned about some other autistic person, and this discourages people from looking any further. My experience is that explaining my autism to someone with no prior exposure to it is much easier than explaining it to people who think they know something because they absorbed the over-simplified "spectrum" concept.

To me, autism is a "category" containing a multi-dimensional region of closely associated conditions, not a "spectrum".

Yes there is that old chestnut.  Good point!

One problem with the use of spectrum is some people, when you say you have ASC, will reply that everyone is on the spectrum to some degree.

I don't really disagree with anyone.  I am happy if others are happy with the label.  For me I don't think I fit at certain point on this spectrum, I think I'm all over the thing!!  I have no particular desire anymore to fit in with NT's and don't try to unless it is unavoidable.  I have totally embraced my difference but that took 43 years! x

Honestly I don't believe that there is a one size fits all with any of this.  If identifying as being on a spectrum is helpful to you then I wouldn't want to see that taken away from you.  God knows life is hard enough for us a times.  I think that is why I posted to see what others thought, whether generally people liked the spectrum tag or didn't like it much.  So your view is helpful to me.  I'm guessing that most of us probably don't like being thought of in terms of 'disordered' ??

Hey Cloudy

I was married to a Jamaican man for 10 years.  I am white.  I was in care and raised by a Jamaican couple.  I have 4 mixed race children.  I speak fluent patois (lol).  Trust me, I know all the nasty terms that are used.  My children can be referred to as "dilutes" "lightskin" "greys" da di dah di dah.  That wasn't my point.  Generally in society the correct term is black.  Black people do not like being referred to as coloured or any other term like that - BY OTHER PEOPLE.  Amongst themselves it is open season!!   

This kind of wasn't my point.  My point was that as a general term we don't need to distinguish that not everyone is the same shade do we?  In fact where black people are concerned, a white person doing that would be considered rude.  Black people are just referred to as being black in society and that is the polite and accepted term (for the majority).  We don't need to distinguish the 'spectrum' - yet it is clearly there.

The same is true for depression.  Some poor souls can't get out of bed or function, others can with an antidepressant.  There is a spectrum of depression.  There is also a spectrum for ADHD as well!!  Why isn't ADHD a 'spectrum disorder' because it absolutely is!!!   There is a spectrum for Cerebral Palsy and a spectrum of visual impairment.  Yet we do not stick "spectrum" in the label because it's a 'given'.  My point is that why can't it be a 'given' for Autism.

I wonder why so many years on with all the campaigning that people still do not get it?  

It still remains that if Johnny doesn't present like little Billy that they once looked after or knew then Johnny is fine and God help Johnny if he can make fleeting eye contact!!  

I don't think there is anything wrong with helping those that don't understand to understand it by explaining it as a spectrum because it absolutely is.  I just wonder why in the case of Autism it is so 'hard' to understand.

I guess I am of the camp that would like to see the Spectrum and Disorder bit of the label dropped.  I don't identify as having a disorder and I do not feel the need to plot myself between two extreme points.  More importantly I don't want someone else doing that either and getting it wrong!  If they can't understand that Autism is a spectrum, how on earth are they going to plot me in the right place and where am I on this spectrum?  I have a gifted IQ, yet I cannot leave the house to buy a pint of milk.

I can fake my way through social engagements for about half an hour till the cracks start appearing, yet certain smells can make me cry and have to leave a room.   I can put together a very complicated spreadsheet, yet I do not know my times tables.  

Yesterday I had a legal decision overturned by pointing out that the law was applied incorrectly by the very person who decided if the law was broken or not at a higher legal level.  I did that without legal help on my own.  Yet sometimes I can't explain what I mean to friends or remember what I came into a room for and I confuse people and leave them wondering what an earth I'm banging on about.

I'm kind of all over the spectrum.  I don't sit at one point and I think that is my gripe with the spectrum concept.  Also I guess I am considered to be high functioning (another term I'm not fond of).  At the higher end of the spectrum!  With that comes the "you are ok and don't need any help" - Really??  Like I can't leave the house alone.  At the other end people can get 'written off'.  My little boy cannot speak, he permanently spins, verbally stims and his eyes go in different directions, he dribbles and wears nappies at nearly 9 years old.  He looks like he is at the lower end of the spectrum!  Yet he can operate an iphone better than me.  He speaks and spells 10 letter words on an Ipad and he is a smart cookie.  So where does he sit on the spectrum?

I don't know I'm probably explaining myself poorly but almost by highlighting the spectrum which is helpful on the one hand, on the other it allows other people to 'plot' us on it!! x

Also truly are we on a spectrum at all in the true meaning of the word spectrum. 

used to classify something in terms of its position on a scale between two extreme points

Do we all sit at a certain place between two extreme points or are we all a bit more like me and all over the flipping thing ????  If we don't sit at a particular position, then is it truly a spectrum in the literal meaning of that word?  Is that the right word at all?  

Are we not just Autistic which is more akin to the concept of a snowflake (which is still not quite the right concept either) . . .   From a distance a lot of it can look similar but under closer examination every single one of us actually is totally unique?

I'm very comfortable with the term spectrum. As much as you may disagree, we are in the minority - the world is built by NTs, for NTs so we are the ones who don't fit with the 'norm'.

When compared to that norm, I fit in 99% of the time - but under certain conditions, my inner autie pops out and I cannot function. There are lots of auties who cannot interract with the NT's world at all - and there's people somewhere in the middle. That makes a wide spectrum of abilities (to fit in with NTs).

I like the spectrum concept as Autism seems to manifest itself in so many ways. I mean, there are many things that supposedly are considered key markers for it that don't seem to "fit" me but many that do. Am I autistic? Perhaps but it seems I fit somewhere on the spectrum.

In the.days.of.apartheid in South Africa, there were.three classes of race. Black, white and coloured,coloured.being a mixed race.South African (Basil Dolivera being one such).

The story went, which may.be apochryphal, that Chinese were classed.as.'Black' but as there was a lot of trade.with Japan, the Japanese were classed.as 'Honorary Whites' !

Xanadu said:

The word spectrum in my view helps the average people grasp that not all Autistic people are exactly the same. Why is that so hard to grasp that we need a fancy word.

Because the word helps them grasp it. You answered that yourself! If it helps people be aware of that so be it. I consider everyone who is Autistic to be Autistic.

Xanadu said:

black people are just referred to as black

Hmmm. Not really. I've heard enough terms like "blacka", "browning", "yellowman", and "redbone" said by black people to say some consider it a "spectrum". It can get quite nasty. Try telling some Dominicans or Panamanians that they are black, they will say they are Latino. Try telling some West Africans that they are the same as Afro-Carribeans. I've seen a few arguments over it over the years, and physical fights. Girls especially get nasty over the skin tone thing. It's all a thing, if you are around those communities enough you will hear it from time to time.