To not like the phrase 'on the spectrum'?

[CarriesBucketOfBlood]

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?

Ah, I see Lashes thanks.

true, lemony.

my eldest is called high functioning and - to quote - he "seems so normal, you wouldn't know, would you? if you didn't talk to him a lot I mean."

He's suicidal. I have a massive file of his suicide notes, where he says he wants to die and asks me if he will be autistic in heaven.

Who wants to be 'normal'? He bloody does.

There's no help out there. None.

I hate 'normal'. My DD is a normal wee girl. She just has autism.

The issue with high functioning is that people use it as functioning on a day to day basis when it actually just means IQ, having a normal or above IQ doesn't actually mean anything in terms of how autism affects somebody.

When I say my son is high functioning I mean he has good vocabulary and can communicate. He is not a genius or child prodigy.

FenellaF.... I feel for you. My son is the same. He is 14 and sooo wants to be "normal" and NOT have autism. He is totally friendless and just recently tried to venture into two friendships but....total rejection. It's very hard and a lot of so called "normal" kids are so cruel. It breaks my heart every...single...day.

PolterGoose that link was really interesting, and the circular colour model has definitely helped me to understand the different layers and complexities of the autism spectrum.

I do have a question though, in that there must be some blurring of boundaries between people who are very easily diagnosable as autistic, people who clearly aren't, and people who could be diagnosed as autistic, but wouldn't be unless they had other atypicisisms. Where do they fit in to the spectrum idea?

I think it's always going to be hard to find vocabulary everyone's comfortable with when talking about something like ASD. I quite like the phrase 'on the spectrum' because it does highlight the massive variance in traits/experience/severity.

In terms of there being more than one spectrum, of course that is true because it's a word that can be used for many things but I think most people now know that without any other preface it is referring to the autistic spectrum. We do the same with may other words and phrases. We typically refer to 'weaning' to mean the process of starting a baby on more solids in the UK. In the US they tend to use it more to mean the process of stopping giving milk or formula. Whilst the two are connected they're not the same (I was told by Americans online there was no need to stop breastfeeding at six months and I had to explain I had no intention of doing so but was starting solids at six months). And, of course, you could also talk about weaning off dummies etc.

I also find the phrase 'high functioning' generally helpful because it can be of use to be able to convey that someone has ASD but isn't non-verbal etc. However, I do agree people tend to confuse how 'high functioning' someone is with the severity. You can be very high functioning but also have severe ASD.

As for 'autistic traits' it can be diagnosed or not. DS1 is currently being assessed for ASD (if he's not autistic I'll eat my whole fucking wardrobe) but because he is high functioning and only three the HCPs are a little reluctant to diagnose. The paediatrician we have seen has said he might end up with a diagnosis of 'autistic traits' with a view to having that reviewed in a year or two when he's older and it becomes more obvious. However, I have also been known to say I have 'autistic traits' and I don't mean the same thing. I wouldn't say it to a stranger without any explanation as some sort of excuse for my behaviour or anything but have used it jokingly with my family (ASD runs in both sides of my family) and in conversations like this to signify in tests for ASD I score significantly higher than your typical NT (if that works as a phrase!) person but not high enough to be autistic. My traits are things like: high sensitivity to sound, problems with food textures, social anxiety, obsessive tendencies. Of course, whilst not everyone is on the autistic spectrum, everyone does have some autistic traits (it's part of what can make diagnosis so difficult) so I just mean I have more traits than most people but fewer than someone who actually has ASD.

I think it can be a bit of a minefield but it's good to have discussions like this.

I think the issue is that there is an enormous range of presentations of Autism and there are lots of people who have some of the challenges associated with Autism but not to the point that their impact limits their ability to function.

There isn't a term which covers everyone with all presentations of ASD that everyone finds acceptable.

You can't have mild Autism because, if it's mild is doesn't have the impact required for a diagnosis. You just have some of the challenges commonly experienced by people with Autism but they are manageable. There isn't a decent shorthand for this.

There are people who have Autism but are of average or above average intelligence and are able to adapt their behaviour to the point where it isn't immediately obvious to those who don't know them well. However, their difficulties can have a huge impact on multiple aspects of their everyday lives. If you use the term high functioning, you are implying that they are somehow better than others with the disorder and also possibly failing to acknowledge the impact of their difficulties.

There are people of average or above average intelligence whose difficulties are much more apparent to others and who find the assumptions made about their ability to understand distressing on top of the other devastating difficulties they face. They could probably be described as both high and low functioning but neither is appropriate.

There are people who have associated learning difficulties and very little in the way of communication skills who could be described as low functioning but that is, understandably, perceived as a horribly negative term and the characteristic spiky profile of people with Autism means that they may function highly in some area of their life - even if this isn't immediately apparent to others.

Within each of those categories there is a huge range of people who are more different from each other as most NT people to the point that it is ludicrous to lump them together yet they share a diagnosis and some aspects of their needs and presentation.

There are also people who fit into none of those categories or perhaps more than one of them, including people whose outward presentation changes dramatically as they mature or as their needs are met more or less well.

My DDs aren't satisfactorily described by any of those terms but I can't think of any better ones.

Politically correct language changes constantly as people strive to find the right language to use and, while I understand the need to take care that descriptive terms don't limit our perception of the rights/abilities/emotions of people with different disabilities, I think we obsess about it a bit too much at times.

I also think that you only get to complain about a term in common use if you can offer a more appropriate alternative. The last thing we need is for people to think they can't mention Autism at all because they are worried about using the wrong term and there are no right ones.

to all of you.

Can I just post a slight hijack & say that I hope that the twats never drive you away from posting on MN - you have all taught me so much & made me aware of so many things about those with special needs that I had no knowledge of before joining MN. And I try to pass it on in RL, whenever I can.

And, Pag - it's not often I audibly laugh when reading posts but he can fly really made me chuckle.

Even the medical profession can't decide how to label everything in the 'autistic world'.

The DSM-V (used in USA, often quoted in UK) was changed last year and omitted aspergers entirely.

The UK seems quite inconsistent in what labels/diagnoses it gives out.

As a recognised condition it is a very recent (1940s) discovery with awareness of verbal autism/aspergers/hfa only really emerging with the rise of the internet in the last 20 years.

Although Kanner & Asperger identified and defined different 'types' of autism at the same time they were unaware of each other's work (German/English). It was only later the connections between these groups of children were made.

So atm we are in a situation where there is lots of terminology but also a lot of confusion.

Personally I have used the phrase 'autistic traits' on a particular mn thread where I was trying to give a context to my line of thought but as I don't yet have a formal diagnosis I didn't want the inevitable accusation of lying if I came straight out and said 'I'm autistic'.

I will self define in other contexts though, as their is recognition within the autistic community of how hard it is to get an adult diagnosis so people accept others' self definitions.

There is a book called 'Isabel's World' written by a father whose dd was diagnosed in USA in the mid 90s which is very helpful for giving background for all of this.

eliza, I'm sorry that your son is suffering this too. It's so painful. My son is 16 and is going through the same thing. the nt teens around him can be so cruel. he just wants friends but practically nobody is willing to give him a chance. He'd make anyone an amazing friend. It causes him such pain. He feels the rejection and it hurts him so much.

He should be on a trip today, celebrating finishing school. They're going to alton towers.

I cancelled him going at the last minute because he has been trying to get the other kids to let him go round with them and they're ignoring him. I couldn't bear to let him suffer the pain of getting there and spending the whole day on his own.

So this afternoon I am taking him to Game and I'm going to let him spend fucking loads.

I have just read the colour chart link again, and I think I will start referring to people as 'part of the spectrum' as opposed to 'on the spectrum'.

To me it sounds so much more humanising, and now I am starting to understand the huge variety in the ways autism presents itself, I think it might actually be a more useful way of phrasing it while still retaining the spectrum part?

Feel free to correct me if you think it's bad terminology.

Polter, that colour post was really interesting, thank you.

Autistic traits can be normal in children under 5, we have gone through this with DD1. She had some very strong difficulties (but not the kind that would lead to the early diagnosis in a girl) now she is 6, she genuinely seems to not be autistic (or she is amazing at hiding the signs) there is still stuff going on though, I wouldn't say she is nt. Possibly ADD.

So I found the autistic traits label very useful for a while. Hopefully we didn't offend anyone.

I don't mean label, sorry that was daft To write... I mean shorthand to explain that she genuinely found some things enormously difficult and that standard parenting approaches did not work.

I dislike people using 'on the spectrum' when someone likes their shit to be in alphabetical order and they don't actually have a disability, just a penchant for being ordered.

I dislike the term HFA, even more so when people say that DS must have HFA as though it's a more disireable form of autism.

And I hate when people tell me 'they all have a special talent' a la fucking rainman.

TheseSoles there was also a study done recently that showed that a few children can be diagnosed with ASD and then grow out of it too.

I don't know how reliable it was, but your DD''s story reminded me.

MrsBobDylan, the DS of friend's of my parents has ASD and his mum said to DM they still hadn't discovered what his 'special talent' was. My mum - having researched ASD extensively when getting a diagnosis for my sister - was speechless.

I have used the term 'Autistic traits' to describe DH and myself recently. I hope it didn't offend anyone. I score quite high in the online tests for ASD, and since going through the journey to diagnosis for ds1 I have learnt a lot about ASD. I can now look back and see that a lot of my behaviours and attitudes from being a child are consistent with autism, enough to make me wonder whether I should try and get diagnosed. I use autistic traits because I don't want to claim a diagnosis that I don't currently have.

I don't tend to use 'on the spectrum' in regard to ds1, I just say he's autistic or has aspergers, depending on who I'm talking to really. I don't like the term HFA as it downplays the difficulties that can be faced by those with autism and I guess underestimates the capabilities and potential of those with 'classic' autism.

I have got issues with noise sensitivity.

But would never call it an "autistic trait" because I am otherwise fundamentally NT.

That's just the way I personally view it.