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?

Fanjo - I didn't know that! I will look it up and have a read. Thanks.

Just to put the cat amongst the pigeons, there was a really good program on the BBC a few years ago where a university professor who specialised in autism (he wasn't the good bit though) spoke about everybody being on the spectrum and that autistic people were just at one end of it. My point being is that people 'in the know' use this phraseology so your average Joe Blogs isn't going to know any different iyswim.

I object to the minimisation of my ds's difficulties because 'we are all on the spectrum' or 'my nan /dog /postman is a bit autistic' or 'all kids do that' etc

I don't like 'normal' etc I prefer typical.

It makes me feel sad when people talk about 'hating autism' because even though my ds is bloody hard work, he has no friends, his schooling is a mess and I've had to give up work, I wouldn't change him. I wouldn't know how to separate out the person he is from his autism. It is part of who he is. It feels like people are saying there is something wrong with my ds as a person.

HOWEVER, I fully appreciate that other people would find my view difficult as they or their child are far more severely affected by their autism or have other difficulties running along side. They might find my view fanciful or naive.

I think the upshot is that where there are areas of commonality for autistic people and their families, there are many areas of divergence too. I would hope that the community as a whole could stay respectful of other people's views and experiences but after reading some blogs and online forums, we may be a ways off that yet.

I suppose it's just as easy to say my DD has sensory issues...

PolterGoose yes I think that might be him. I remember thinking 'when did Ali G get a degree' I was slightly disappointed when it wasn't him.

I wasn't suggesting that he was right to use it that way. Just that if people in a position of authority on a subject use it, the general public have little hope of getting it right.

Would someone with sensory issues be on the spectrum? My DD's issues are quite new, so I didn't know it was anything to do with ASD. Could I get a diagnosis? If so DD would be able to take a packed lunch to school on medical grounds (the only reason anyone's allowed to bring a packed lunch at DC's school ).

FenellaF thank you.... You have now made me stop what I'm doing to sit down and cry. Actually, I cry quite a bit at the moment, so don't feel too bad. What on earth are your son's school doing?. That's so, so very sad and I hope he has a great afternoon splurging at GAME!

At DS's school, he's on his own all the time. So isolated. They appear to be able to do nothing on the buddying front or helping him to make a friendship/s of some sort.

We live in Cheshire....quite close to Alton Towers.

Keep your chin-up, love.

And OP, it doesn't really matter what we "label" it....those on the spectrum suffer, and the people who love them, every day.

soapboxqueen.

I don't find your view fanciful or naive. I suspect your view of your child is exactly as it should be.

But my view, that I would change DS2s autism in a fucking heartbeat is not negative or dismissive of him.
He is awesome and I love him immensely. He would still be awesome if he did not have autism. It doesn't make him more precious or unique. It just makes his life intolerably hard.

Interestingly I used to say I would not change DD and take away her autism.

But now, as she grows older, I totally would.

As I said, I totally get that people see things differently.

Some heartbreaking accounts on here.

There is so little and often patchy support to folk and their families.

Fenella - I hope you and your lad have a fab time!

Can't we all make it a bit better for these people by being a bit more careful of tje language we use...

No you are not on 'the spectrum' just because you don't like changing your plans or having an ordered desk. Folk with autism have real distressing difficulties as has been given in these moving accounts.

No you are not a 'bit ocd' if you check your taps once before you leave..... Try not being able to leave the house for 8 hours without complicated exhausting rituals that leave you unable to think of anything else, or even leaving your home at all, as you believe with all your heart that the dirt outside will kill your family. If you do leave you will scrub yourself into the early hours, using bleach so much that your skin is coming off...

Please don't insult these people by using these terms so thoughtlessly..

The problem is that very few people actually know what autism is.
Let's be honest here, before coming on MN 11 years ago, I had no idea of what autism was. No idea at all.
As far as I knew I knew no one with autism either.
It's reading threads on here that started to do my education.

Then there has been dc2 and some big issues in my marriage and lo and behold, DH self diagnosed with AS and dc2 was diagnosed with ASD too.
Cue for much more reading about the subject.

Now I have some understanding of what ASD is. In the 7 years that this journey has been, from the first 'niggles' about DH to dc2 assessment, I learnt a lot.
But I can't expect people around me to have the same knowledge than me.
Even, I personally would never say that 'I know' what it means to be 'on the spectrum'. The one thing I know is that it means lots of hardships both for DH and dc2, hardships that I can't really make that much easier for them, let alone taking them away all together.

As for the others .... if saying that someone is 'on the spectrum' helps them understand that
1- there is variety within the ASD diagnosis
2- the person in from of them HAS some difficulties, even if theydon't really get what it is,
then I'm happy.
I'm just happy for people to make some allowances some time to time so it makes their life a lit bit easier. I'm just not expecting much because being able to do the allowances they would need requires more understanding of what ASD is than 90% of people have.

I have 3 dc with ASD, I don't use the term on the spectrum but I am not offended by it, all of my children are completely different in how they present with their autism, it truly is a spectrum.

Technically my older 2 (aged 11 and 9) have high functioning autism, it is a deceptive term really, people that don't know them well don't understand how much their autism disables them. I could (and do) cry for them, all they want is to be " normal" and fit in , my dd has managed this to a degree and tries to hide her autism , the downside of this is her disability is often overlooked. Ds1 however, is so desperate to fit in , and play football at lunch with the cool kids , talk xbox, but nobody will give him the time of day unless they are bored and picking on him to provoke a reaction. He would be the kindest, most thoughtful, most attentive, caring friend ever. He starts high school in September and I'm dreading it, he is so aware of who he is and who he wants to be , and just wants to have friends, he is very positive but he is starting to struggle to maintain this and I'm so scared by how he will cope.

My youngest (7) has more severe ASD and had just been referred to be assessed for pathological demand avoidance syndrome, which I'm certain he has. He is very behind at school, has full 1 to 1 support , has poor motor skills, and no friends, and we are fighting to get him a place at a special school. Yet he is happier than my older son because he doesn't care about any of these things.

There is a spectrum, but there no "good" end to the spectrum, it's just a way of saying autism presents in very different ways.

Oh, I also have used the term autistic traits with regards to my dh. He has a lot and I believe he has autism. I know I'm not an expert but having 3 dc with ASD has been a learning curve.

Soapboxqueen.

Yes, I know.
The point I was trying to make was that I'm no longer sure it's a matter of people seeing this one issue differently because of their personal feelings.
I think often times our perspective is shaped by the specific presentation of autism.
I can absolutely imagine someone embracing their autism completely or having a child for whom their autism seems (and therefore is) part of who they are.

But I honestly would be surprised if many of my peers, with children for whom ASD negatively affects almost all of their lives and whose lives after our deaths will be precarious, would completely embrace the idea of not changing a single thing.

I'm not arguing with the point you made - either how you see things or the fact that you accept others feel differently. I'm just expanding Fanjos point really, that we sometimes don't get to chose how we feel and whilst morally I would love to say 'he is perfect just as he is' I just can't.
It's too bloody hard and scary for him.

Headfirst, I really hope high school works out well for your DS. It did for ours. Will he be getting any extra help there?

Headfirst it's heartbreaking when your child desperately wants friends and is pushed aside and ignored. Ds1 is yet to be invited to a party despite inviting the whole class last year (I don't normally do whole class parties but I thought surely someone would return the favour). He thinks everyone is his friend but really the kids who come round to play use it as an excuse to either wind him up or see how far they can push boundaries with their own behaviour.

Fenella, I hope your ds had a lovely afternoon, a splurge in Game would be my ds1s idea of heaven I totally understand why you didn't send him, I've felt like that many times, just reading that gave the the sick worried feeling in my stomach. Ds had gone on a trip with the high school today as a taster session, the staff have been fully briefed by autism outreach and his very protective primary TA'S but I'm so worried.

It's sad to hear the are so many of us in similar situations, there really isn't enough support available.

Ds1 has no statement, he is really clever and excelling educationally so they turned him down. His major needs are social and emotional. He's had great support at primary despite no funding, which is another worry for high school. The learning support teacher there is on side, and autism outreach have been fantastic, they have briefed the school and are doing training with them. Ds1 had had extra visits with the learning sorry teacher and his year 10s, he's excited that he will have some year 11 mates when he starts

Thanks