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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To not like the phrase 'on the spectrum'?

178 replies

CarriesBucketOfBlood · 02/07/2015 08:02

DISLAIMER: As far as I know I do not come into frequent/ repeated contact with anyone with ASD, sensory issues or anything else that may be described as being 'on the spectrum'.

I have just read a long thread where the phrase has been used a lot, by people on both sides of the debate. As I read I got more and more uncomfortable hearing this phrase.

I think it is because I see that if it is a 'spectrum', we are all by definition on the spectrum. We are just at different ends. From neurotypical to atypical. However I think that this phrase misrepresents atypical people because it is now used as a way to exclude people from 'the normal', which is different to the phrase's actual meaning.

Furthermore, I am sure that there must be more than one spectrum, and to lump all these people together is lazy at best, and insulting at worst, because it doesn't seem like we are taking these issues seriously.

I may not be explaining my reasons for being uncomfortable with this phrase clearly. In which case I do apologise. I am also very aware that people/ parents of people who are atypical may come along and say that they are very happy using this phrase, in which case my mind may be put at rest.

So AIBU to dislike this phrase?

OP posts:
CherylBerylMeryl · 02/07/2015 14:40

This reply has been deleted

Message withdrawn at poster's request.

Timetodrive · 02/07/2015 14:47

I imagine that there will be adults who have ASD that has not been recognised so for them everyone is on the spectrum as they relate to their norm.

hedgehogsdontbite · 02/07/2015 14:47

HFA has never been a diagnosis. The 3 labels available are:

Classic autism (sometimes called Kanner's autism)
Asperger's Syndrome
PDD-NOS

HFA relates to IQ. So you can have any of those three labels and also be HFA. Although common practise has been to use it a sub category of classic autism. Most probably because you have to be HFA to get the either of the others, whereas classic autism was originally only seen as low functioning.

LashesandLipstick · 02/07/2015 14:49

Hedgehog I was told HFA was like Aspergers but with a language delay...so if you talked early or normally, aspergers, if you talked later, HFA.

There's so much confusion over terms, it's annoying.

LashesandLipstick · 02/07/2015 14:50

I was told this by the person who referred me by the way so a HCP

x2boys · 02/07/2015 14:52

my sons diagnosis is autistic spectrum disorder with learning disabillitys he has a chromosamal deletion thought to be the the cause of his asd but primarily asd is his diagnosis as diagnosed by his paediatrician so yes he is on the autistic spectrum .

SewingAndCakes · 02/07/2015 14:54

it complicates things further (for me anyway) that the diagnosis of Aspergers has been done away with in favour of a blanket term ASD (for parts of the UK at least, to fit with DSM-V I think). Ds1 has a diagnosis of ASD but I treat it as Aspergers as there's more understanding and literature specific to his needs.

MrsBobDylan · 02/07/2015 14:55

LadyNym I wonder if your Mum's friend will feel cheated if her DS doesn't develop an amazing, super-brain ability?Sad

That said, when DS was 2 I had to fill in a questionnaire which asked if he had an 'special abilities'. I actually asked dh if I should put down ds' knack for putting the key in the back door and opening it, as I'd not known another child able to do that at 2.BlushGrin

hedgehogsdontbite · 02/07/2015 14:56

Hedgehog I was told HFA was like Aspergers but with a language delay...so if you talked early or normally, aspergers, if you talked later, HFA.

Yep, that's correct. And if there is not enough information to decide between them then it's PDD-NOS. That's why the DSM has recently changed it all to just ASD, because they think it's a pointless differentiation.

PolterGoose · 02/07/2015 14:57

This reply has been deleted

Message withdrawn at poster's request.

orangepudding · 02/07/2015 14:59

My son was diagnosed this year with ASD. I think ASD is used to cover all types of Autism so there are no longer diagnosis of Aspergers or PDD-NOS. Perhaps it depends on the clinician diagnosing.

x2boys · 02/07/2015 15:01

i hate the low ,high functioning things i agree they are not helpful ,by deinition my son should be low functioning but i,m not ready to give up on him at just five years old i have no idea what he will acheive yet.

SarkyWench · 02/07/2015 15:07

I found this really helpful in understanding what is meant by 'the spectrum'

graphicexplanations.info/2013/09/13/understanding-the-spectrum-in-autistic-spectrum/

hedgehogsdontbite · 02/07/2015 15:10

Some clinicians in the UK are using the DSM criteria and diagnosing ASD now. Strictly speaking they shouldn't be as it's an American manual for use in the USA. NICE guidelines require NHS clinicians to use the ICD-10 (World Health Organisation International Classification of Diseases) which still has the old criteria and labels.

manicinsomniac · 02/07/2015 15:15

Wow, this thread is an absolutely revelation to me.

I absolutely thought that 'the spectrum' referred to all people and that we were all on it somewhere. It was explained to me by a teacher there something like this when I was 18 and doing work experience at a Special School:
'The autistic spectrum covers everybody. It is just a way of being. At some point along the spectrum it becomes socially impairing and that is the point at which you'd begin to describe someone as aspergers. Further along the line you reach what is known as autism. Fred, Bob and Charlie (not real names) are all on the Autistic Spectrum but their disabilities have very little in common with each other. In the middle of the spectrum you often find university academics and people who enjoy rigid routines and find it difficult to express or deal with emotions.'

Was this seen as correct in the early 2000s? Or was this that teacher always wrong?!

The thing is, it makes a lot of sense to me. It explain to me why I am unable to empathise or to detect when someone is lying yet I'm NT. I just thought I was a bit further along 'the spectrum' that people who can do these things. Do you think there is also such a thing as an 'NT Spectrum'??

I feel quite embarrassed to have got this wrong for so many years!

Dawndonnaagain · 02/07/2015 15:28

I have Asperger's Syndrome, as does dh, ds2, dd1, dd2. We don't mind spectrum when it isn't being used in the 'everyone's on the spectrum' context. It's shit. Everyone isn't on it and if you tell me your dh has autistic traits, or 'oh it's not his AS, it's just a man thing, I may have to be extraordinarily rude!

Grrr!
Fenella
Sorry life is so hard, I've been there and for my boy it has improved. I hope that happens for you, too.

Dawndonnaagain · 02/07/2015 15:31

manic. Most people on the spectrum can empathise. In fact recent research shows that we are inclined to over empathise and have to switch it off because we can't cope, so looks as though we're not empathetic at all.

soapboxqueen · 02/07/2015 15:32

Just FYI my ds was diagnosed with aspergers in February but the clinician told me that the surrounding authorities don't diagnose it anymore.

hedgehogsdontbite · 02/07/2015 15:46

Manic I don't think that teacher's explanation has never been correct but it's always been a prevalent myth. Lorna Wing identified autism as a spectrum disorder in 1981 and from the off set she described it as a triangular spectrum based on the 'triad of impairments' (see the pic I linked up thread). This perception that it's a linear spectrum is incorrect and ill informed.

Timetodrive · 02/07/2015 16:22

Where I am the medical profession where in the situation that the diagnosis was then interpreted by non medical people for the issue of services. Social services offer more support for those with diagnosis of low/ severe. It becomes catch22 low functioning could be treated by educational area by limiting a child whereas the same diagnosis can open the door to other services. The one diagnosis with a list of conditions was meant to address this, but this is also being used a method of limiting services.

MaximilianNero · 02/07/2015 17:30

Nowadays I always say 'I'm Autistic' (officially diagnosed with Asperger's syndrome), but I'd be fine with being described as 'on the spectrum'. Whereas I don't feel comfortable with 'person with autism' (referring to me, I completely understand that that might feel right for someone else). I see the spectrum pretty much exactly as Nat sees it in his blog post, if you asked me to draw the spectrum I would have drawn a colourful circle - or the prism light experiment (I see a metaphor for invisible disability in the way the prism is see through and you don't see the colour until you shine the light on it, because I'm overthinking this way too much. And obviously some people have a very visible disability).

I fit very neatly in a box labelled 'high functioning' with no buts...but I don't like the term, because it's not very useful for a lot of other people. If you have a high IQ but are mostly non-verbal, can't live independently and write your very insightful and extremely well constructed blog about your life on your godsend-of-an-iPad because it's the only way you can express your thoughts to others, or if you have a clutch of A's and A*'s in all your exams but haven't left the house in 3 years, well, in what way does 'high functioning' help describe your condition? Functioning is a word we automatically associate with the ability to do the day to day things most people take for granted being able to do, whether that's talking, or visiting a packed Tesco on the big weekly shop, not a word we automatically associate with IQ.

I remember telling someone I was autistic in secondary school, and getting the reply that they thought it was overdiagnosed these days...which I interpreted as they didn't think I had it. I quietly and shyly challenged her, but I felt too confused and dismissed to do it robustly and tell her how wrong she was. Some people also seem to associate the word high functioning with 'over diagnosed', just another way to minimise the challenges people have in their lives.

I don't have a visible disability. I have some issues with certain areas of communication (small talk, expressing thoughts in words and subtle non-verbal communication), but really in terms of communication I'm not impaired. I used to be. It's not that I've 'grown out of being autistic' (for instance my obsessions/obsessive thoughts, anxiety and strange repetetive movements have become more and more pronounced as I've got older, as my social/communication difficulties have decreased). I still score as being above the autisitc line on online quizzes. It's that I'm a good actress, I am empathetic, I deeply want friendships and company and when I have a script, or even just a basic pattern, I rarely find it difficult any more, because that pattern becomes safe, predictable and then automatic, which also means little or no anxiety. So you might well talk to me and watch me talk to other people and then be surprised to learn I'm autistic. But if someone's going to say there's not a thing that's atypical about me based on that and 'it's overdiagnosed', then there's a part of me that likes to imagine if they saw me rocking, flapping and pacing, and their face as they run away from the freak as fast as possible...just a part. In reality, whilst pacing and flapping and rocking feels wonderful, comfortable, 'right' and frankly joyful at times, I feel such embarassment or shame if someone sees me.

In terms of special abilities, my prepared answer is Yes I do, and in fact I was even invited to attend a school for people with special abilities, but after I took a look at the death and injury rate there I declined Professor X's kind offer.

Goldmandra · 02/07/2015 17:31

In my head, Autism is a series of spectrums, not just one.

There are lots of traits or difficulties associated with Autism, e.g. lack of imaginative play. My DDs both have ASD. DD1 totally lacked imaginative play, whereas DD2 plunged so deeply into her imaginative world that she found it hard to differentiate between it and RL at times. So, on the imaginative play spectrum, they are in different places.

DD1 can cope better with changes in routine than DD2 so they are on different places on the rigid thinking spectrum.

Each person with ASD is in a particular place on each spectrum, creating their own personal profile which is unique to them. The one thing they all have in common is that they are far enough along these spectrums (spectra?) that their traits have a significant negative impact on their ability to live a 'typical' everyday life or have access to the opportunities enjoyed by NT people.

People with ASD are far too different from each other for me to imagine them all placed along one spectrum. That just doesn't make sense to me.

SewingAndCakes · 02/07/2015 17:33

Great post MaximilianNero

Pagwatch · 02/07/2015 17:38

"In terms of special abilities, my prepared answer is Yes I do, and in fact I was even invited to attend a school for people with special abilities, but after I took a look at the death and injury rate there I declined Professor X's kind offer."

Grin Maximilian

Sizzlesthedog · 02/07/2015 17:45

This is very interesting.

The senco at school says "we're all on the spectrum" but know I see how wrong that is. worrying at best TBH

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