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?

I find the easiest way to get your head around it is by thinking about migraines. There are lots of symptoms of migraines. Different migraine sufferers have different symptoms and experiences. One migraine sufferer might have different issues at different times. They even have times where they are completely normal. Would you say 'we all get migraines' because everyone gets a headache at some point?

HFA gets thrown around a lot for my DS.

He's intelligent, he talks, he's capable (with adjustments for physical disabilities) of doing the majority of main stream school.. or has been up until now. (yr3, yr4 is looking more daunting!)

His autism may be 'high functioning' but he's affected enough that i'd had a serious conversation today about his future in mainstream schooling, and i'm having to face that its probably not going to happen because of his his autism and its co-morbids as well as how his physical disabilities affect him.

That being said, i've been told that because he is 'high functioning' i may well struggle to get an EHCP and the 1:1 he desperately needs to achieve the potential his intelligence and verbal communication skills give him.

I dislike high functioning in that sense because it makes people think his autism is somehow less than others, but its not, it still impacts on his life significantly!

I've always thought of it as looking like a spider web. If the areas of difficulty are drawn as lines coming out from a central point then individuals will be at a point somewhere on each line from the farthest to the nearest to centre.

If you joined on the dots then people with autism would have differing "shapes" on it.

I suppose if someone just had, for example, sensory issues and / or problems with social interaction they could technically be on the spectrum, but just as a dot, or a line. Not the whole shape that autism makes.

I liked that blog post, using the colour spectrum to explain it.

I have to admit, I was told (by a counsellor or psychologist, can't remember who exactly) that it's a spectrum in the continuum sense, with NT at one end and severe ASD on the other. So I believed people when they said 'we're all on the spectrum'. It's only recently that I discovered that spectrum should only refer to the autism spectrum (think it was dawndonna that told me that), and even then I didn't really get it until I read that post (or more specifically, saw the pictures), I thought she was just being pedantic and insisting that only one side of the continuum was 'the spectrum'.

Anyway, do you ever type/read a word so many times it ceases to make sense? Think I used 'spectrum' a bit too much there!

Crohnically

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.

Yes, I do think sometimes this is the case. My dad was very dismissive of the idea of my sister having ASD for a long time when my mum first started to suspect and even when she was initially trying to get a diagnosis. Now, though, we have all realised (including my dad) that he is also autistic but Asperger's/HFA/whatever you'd like to call it wasn't recognised when he was a child. It has explained sooo much about him and many of the interactions we've had with him over the years! I think one of the main reasons he was so dismissive of ASD and my sister having it was because so much of what my mum was talking about in terms of 'traits' were just 'normal' for him.

I don't need an official diagnosis for me to realise that my son's condition comes from me. My understanding of autism and the spectrum now, allows me to make sense of why I am the way I am, the difficulties I experienced growing up, my lack of social ability, the way I've had to learn to do people and situations that come naturally to others not having ASD traits.

It all makes sense now.

I hate the phrase 'on the spectrum' as it is misused all the time as other posters have already highlighted. I bit like people who say 'we all have a bit of OCD'..... no we don't.

I'm also not keen on 'autistic traits', I feel it is a meaningless phrase that people often use to explain their bad behavior when they are not actually autistic (not that being autistic excuses or implies one should/will behave badly).

I actually prefer 'asperger's syndrome' vs 'on the spectrum' or 'HFA' because I think most people have a rough understanding of what Asperger's is. Other terms just confuse and mislead people..

I thought they weren't using HFA as a diagnosis any more?

I was part of a meeting yesterday in a city library about how to make the place more accessible to autistic people and their families. My dd had been asked to take part as she's an Aspie and I'd gone along as a parent. There was lots of talk of chill out rooms, changing the lighting and having ear defenders available, and also of dedicated staff with extra training.

Two of the people there were from Autism UK and also a research scientist who specialises in Aspergers in women and girls. One of the men pointed out that he prefers autistic as a description of him as he does not 'have' autism. It isn't something you can catch. I think he had a fair point.

He also pointed out that a lot of people go undiagnosed. I don't think we are all part of the spectrum.

Cat there are many autistic people who don't like person first language. The preferred option for many other groups.

Though it is contested by some.

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.

Agree with this one too. My sister (msc in psychology!) was talking about everyone being on the spectrum, and discussing her traits as a 'normal' person. I corrected her about the misuse of the phrase "the spectrum". Stayed away from pointing out that odds are she does have an asc at the mild end of the spectrum though, to avoid the reactions of other family members who were less than supportive about my own clinical asc investigation.

We're all on the spectrum annoys me, no we're not. I don't mind autistic traits if it's accurate. I would say DS3 had autistic traits as he scored very low for social imagination on yhe ADOS assessment. He isn't on the spectrum though!

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

If you are referring to who I think you are - and there's only one person to the best of my knowledge who fits that description - then I can only say that your bullshit radar needs fixing.

The person I am thinking of went to university and was verbal until she suddenly decided that she had autism (to go with her host of mental health problems) and became non-verbal.

There are a few non-verbal people w/autism who have been to university. Lucy Blackman is one (she is Australian, now in her 30's/40's and types independently - her book Lucy's Story is fascinating. ), and Carly Fleischmann, for example, although Carly has lost the ability to type after having ECT

Both Carly and Lucy are usually described as severely autistic though & unless you see them typing present as severely learning disabled. There is some suggestion that there is a subgroup of people with severe, non-verbal autism who have intact IQ's (although do not present as such), but have severe movement disorders.

I know who you mean though crocodopolis and would agree, that while she certainly has a lot of problems, there's much going on there that is not autism. She doesn't really present in the same way as those I know (and I know many!) who are severely autistic.

I have no idea who this person is. Someone pm me, please! Thank you.

I have no idea either Dawn. (Haven't seen you about here for ages. How's your lovely dd?)

Ds's teachers expressed surprise when I told them he could read when he was 6. He could certainly spell cvc and split digraph words from age 3/4. He's never had any speech unless you count the time when he was 6 that he said 'Nicole' like in the papa/Nicole advert. His reading has stuck at the level of his understanding of the spoken word.

Can someone pm me the name too please?

All the NHS professionals I've seen for ds have referred to "the spectrum" with NT at one end and ASD at the other. Doesn't surprise me really.

I recently had a non-official assessment and diagnosis, I spent most of my life believing I was NT, but doing a very bad job of it.

I've been reading loads of blogs recently, if someone could pm me the name too please, so I can stick to other blogs.

Sorry, does that mean somebody is essentially passing as autistic? Could someone pm me the name too please. Sorry if I've totally misunderstood.

Youthecat Finished exams thank goodness! We're settling into holiday time routines now. She's well though, thank you. I told her you asked and she was chuffed to pieces!

Still no name on the blogger?

This, plus comments is a pretty good summary of the controversy. But just google her name & you'll find pages & pages (& videos) and can make up your own mind. autisminnb.blogspot.co.uk/2009/07/cnn-cbc-and-amanda-baggs-controversy.html

I have no idea who AB is should i know?

With a non-verbal, severely autistic son I came across her years ago. For me it just ties in to what I said earlier really. I don't like it when those who have HFA claim to speak for my son, as their experiences are not shared ones (am very interested to hear what they have to say about their lives and perspectives, as long as they don't claim it is his experience as well).

When I first came across AB I believed her & believed she was inspiring etc & someone relevant to my son. If however it's true that she attended a college for gifted kids, and had a very typical childhood then, hm, she's not really doing us any favours. But as I said, it's all very controversial- did she go to a school for gifted kids or is that made up? Who knows.

I'll stick to looking at Lucy Blackman, Ido Kedar etc for inspirations and clues to my son's experiences, as there's no doubt they're who they say they are.