"We're all on the spectrum"

[bluetinpinkteapot]

No we're not! We're really, really not.

Please people who don't have autism or don't know anything about autism, please do not say this to people who do have autism or their carers/families.

It is wrong, it is offensive, it does a huge disservice to autistic people.

If you truly think this, do some reading. Or don't if you don't care - but stop saying it!

From one exhausted mother who has just had to have this conversation yet again with I'm someone who I thought was a good friend.

Yes, I'm another who really, really dislikes the 'high functioning' label.

I'm 'high functioning' in most people's view because I recognise social convention, understand the etiquette of conversation, can generally read someone else's mood to the point I know roughly how they are feeling, but none of that says anything at all about how I 'function', or not as the case may be, in a million of other ways, and ignores the fact that I'm completely oblivious to a multitude of other things, have practically no empathy, have extremely narrow interests, am prone to obsessive behaviour, have cataclysmic meltdowns if I'm expected to function in a 'team' environment and someone else doesn't live up to expectations, and so on and so on.

I'm a million miles away from 'high functioning', but hey, I come across as reasonably astute, erudite, and can articulate myself reasonably well, so I get the 'you can't be autistic' over and over.

cantdothisnow…
"It isn't it effects him more than it does some on the other end of the spectrum because he is acutely aware of his deficiencies yet it give agencies the excuse to dismiss his disability due the assumption that high functioning means mild."

Not just 'mild' - I'd argue it's more insidious than this. I hear the assumption that he can pass for neurotypical (so that's ok then. Well, if you're neurotypical, that is.)

This is me too (probably not ASD but highest/lowest traits say a combination of dyspraxia and ADHD and a weird verbal memory.) I find workplaces of all kinds very hard to stay in, and eventually overwhelming. Have declared my traits where comfortable but even though reasonable adjustments are mentioned, this is usually forgotten and especially in cases of a change of manager or restructure. It's very clear that you are expected to fit in with neurotypical, and the adjustments have to be yours. I've worked in 2 large places where there were a lot of others with autistic traits there because their skills were valued (one an educational technology firm). I'm not saying that this was a place dominated by the non-neurotypical, but even just a higher proportion of balance and more tolerance and understanding made all the difference in terms of the sense of stress and pressure to pretend. They were good in terms of other disabilities as well.

@PandemicAtTheDisco

I find it confusing, My daughter was identified as possibly being autistic as a baby then as a toddler. She has meltdowns, she is hypersensitive, she struggles socially, gets anxious and struggles to sleep. She has two male relatives that had previously been diagnosed as having Asperger's.

She also has a dyspraxia diagnosis and ADHD which are linked to autism - but she has a diagnosis of having autistic traits despite having fairly obvious symptoms of Autism. Apparently a few years ago they would have diagnosed her as being autistic but they changed the diagnosis criteria in 2013. There are three levels of severity of the specifiers and she didn't express strongly enough and didn't satisfy all the criteria. She is supported at school for her other conditions and we were told to get another referral if she struggled transitioning to secondary school.

There's a world of difference between having an "autistic trait" and being on the autistic spectrum. - I'm not so sure.

Sounds like your dd is falling foul of the tendency to misdiagnosed ASC in girls.

I think the difference, otherwise, between having traits and a diagnosable condition, is one of functioning. I come from a a very Autistic family and don't have a diagnosis, myself, but have some very strong traits but they are, mostly, manageable, most of the time. I would have sought an evaluation of myself, as a child, certainly. As it was, my mum was told I was a bit backward and that was that.

regarding the sounds do you happen to know what's caused you to now be hypersensitive to sound. I'm having problems with this with my daughter who has suddenly become incapable of tolerating the sound of me breathing. Obviously there is no much I can do about that but she has become so stressed with noises that I can't control. Do you have any advice as my DD is 11 and has trouble expressing herself?

I don't know if this caused it, or just highlighted the issue, we went to an industrial museum and there was one section where there was lots of working steam machines all clunking and chuffing over and over again. I could feel the meltdown building and building with each clunk. I left DH and DS there as I couldn't bare it. Ever since I've struggle with machine noises. The fish tank filter is currently humming and the pressure in my head is building so I'll have to turn it off for a while.

Most of the time though I cope by using other noise to drown out annoying noises. I have a small laptop that I have tv streaming constantly. I take it from room to room with me. My husband sometimes asks me questions about what I'm 'watching' but I can't answer as I'm not paying attention to it, it's just noise that soothes rather than agitates.

XDownwiththissortofthingX

It seems that even some autistic people themselves don't really understand that autism doesn't impact everyone in exactly the same way, and just because you differ from them does not mean you are NT. Seems ignorance isn't exclusive to NT people

But you're describing one of the common difficulties people with autism have ie a lack of insight about how other people see/perceive the same situation. So maybe they were expecting you to be identical to them which, obviously, you're not.

Separately, when did the expression 'on the spectrum' suddenly become the almost default way of referring to autism? Is it an attempt at a euphemism to avoid saying autism?

I think the difference, otherwise, between having traits and a diagnosable condition, is one of functioning.

@PickAChew I completely agree with this.

I (no diagnosis but have a diagnosed child) have many traits. I struggle if plans change (and have a tendency to say nope, I'm not coming/doing it and miss out entirely rather than go with the change). I cannot bear conflicting noise. I have food texture issues. I've always been told that I'm 'blunt' although I don't mean to be. I've never really 'fitted in' entirely I don't really 'get' people.

My mother, seeing my child, says to me constantly 'she's you, that's exactly how you used to behave I just thought I'd done a terrible job raising a naughty child!' (nice, thanks mum!). There are lots of other little things.

So traits, certainly. Am I autistic too? I don't know. Maybe. But the fact that I function 'normally' day to day to me indicates not. I think it more likely that I am a person who has autistic traits rather than a person who is on the autism spectrum. Because if I were, then I feel like these traits would not be traits they'd be to the point where they were impairments. At which point I would seek a diagnosis.

Theory of mind is a core deficit for autistic people. Even those of us who are high functioning. I'm an intelligent, educated person and I know that other people are different, think differently, have different opinions etc. But the autistic part doesn't. That's why communication is so difficult, because my brain can't process those two conflicting messages and sometimes it swings one way and sometimes the other, but most of the time it just cries in the middle.

So traits, certainly. Am I autistic too? I don't know. Maybe. But the fact that I function 'normally' day to day to me indicates not. I think it more likely that I am a person who has autistic traits rather than a person who is on the autism spectrum. Because if I were, then I feel like these traits would not be traits they'd be to the point where they were impairments. At which point I would seek a diagnosis.

It's extremely hard to judge if someone is impaired or not and sometimes the person doesn't feel impaired because how they are is normal to them. Take my husband, he's very successful in his career, he has a happy life with his wife and children and is very content. Is he impaired and therefore autistic? Some would say no, he has what a lot of people dream about. Except he's never had a friend, ever in his life, other than me.

Have you heard of Broader Autistic Phenotype (BAP)? This is a term used for people in a family with autism who have some of the traits like their relatives but not quite to the threshold of diagnosis. It's an ongoing area of research.

ShinySquirrel

Sorry! Not trying to make you feel bad at all.

For what it’s worth, I’m floundering somewhere between part one and part two of being assessed by the autism service. I sure picked the wrong year for that.

@PandemicAtTheDisco

I find it confusing, My daughter was identified as possibly being autistic as a baby then as a toddler. She has meltdowns, she is hypersensitive, she struggles socially, gets anxious and struggles to sleep. She has two male relatives that had previously been diagnosed as having Asperger's.

She also has a dyspraxia diagnosis and ADHD which are linked to autism - but she has a diagnosis of having autistic traits despite having fairly obvious symptoms of Autism. Apparently a few years ago they would have diagnosed her as being autistic but they changed the diagnosis criteria in 2013. There are three levels of severity of the specifiers and she didn't express strongly enough and didn't satisfy all the criteria. She is supported at school for her other conditions and we were told to get another referral if she struggled transitioning to secondary school.

There's a world of difference between having an "autistic trait" and being on the autistic spectrum. - I'm not so sure.

My ds is described on various reports as having autistic traits, he doesn't have a diagnosis of autism, but does have a rare genetic condition (only diagnosed at 8, a few months after an autism assessment described him as having 'many traits associated with ASDs'...but not autistic). I do think if we pursued another assessment in the future, there is a good chance he would be diagnosed as autistic, alongside his genetic condition (as many children with this condition are). His traits do cause him huge difficulty in life.

Thank you for saying that, I recognise I'm touchy after being told upthread that I 'need to cut people slack' when they talk about everyone being on the spectrum.

I hope you get your assessment soon. I had my ADHD assessment a few months ago, it has definitely been an interesting year for this kind of thing.

Thank you too, Squirrel.

I’m not intending to be hostile, I’m just saying how I feel as a parent of an autistic child, and obviously I have no idea of your relationship with your niece. The differences are (and I can only speak for my child obviously) is that your niece spends her entire day trying to adapt to a NT world. Of course they can have similar problems, friendships is a good example. But there are many things that your DC will just learn that I have to teach my DS. Social cues for example. My DS tells it like it is, and not everyone likes that. He isn’t being mean, but he sees things in black and white. Your kids don’t have to learn social cues (to an extent) because they are things to just learn as you grow up. You won’t have to spend hours googling social stories. Autistic kids have meltdowns when they get home because they’ve spent the whole day masking. The fizzy pop bottle is a good analogy, where it gets shaken up repeatedly all day then explodes over when they get home. Just asking an autistic child to put their shoes on can make them anxious enough to shake the bottle. How I talk to my DS, making sure I don’t ask him too many things at once, not overwhelming him with information and thinking about how to get him to do the next thing I want him to do is constantly on my mind. Your niece may need sensory toys handed to her throughout the day if she finds things overwhelming. My DS can’t be brought back down from a meltdown, if my other child gets upset or has a temper tantrum I know he’ll get over it fairly quickly.

It may be that on the surface the type of problems are similar, but how they process them and how we have to deal with them are so different. It’s a constant battle, everything is a battle. School is a battle, people’s lack of understanding is a battle and I’m tired of fighting right now, but I will because I have to and it’s important for my DS. I do wonder why though he is expected to fit in to a NT world and why the NT world can’t adapt for him. Yes I probably am projecting and I apologise for any hostility, I’m just tired. And I’m tired that our school don’t seem to give a shit, well enough of one because he’s too ‘high functioning’ to require any support.

💐 to you @ZombieAttack. Your post really resonated with me. I'm sorry things are so tough. I get it. It's exhausting, even if they are 'high functioning'.

It can be more exhausting with High Functioning kids, it's like trying to knock a square peg in a round hole and everyone expects more of them mainly because they can 'mask' neurotypical behaviours.

There is a real lack of appropriate schooling for intelligent autistic children who can't cope in mainstream but don't fit special schools that are set up for children with learning difficulties or behavioural issues.

@campion

But you're describing one of the common difficulties people with autism have ie a lack of insight about how other people see/perceive the same situation. So maybe they were expecting you to be identical to them which, obviously, you're not

I think there's an element of that, definitely. I've witnessed it plenty times on here, where a user with a diagnosis will come flying into a thread to shoot down what they see as an incorrect assertion about autistic people, when I'm sitting here thinking 'no, that's me to a tee', the assertion is perfectly correct.

I think I struggle with it because I can usually spot other autistic people at 100 paces. They stand out to me because I'm sensitive to the behaviours, the tell-tale signs, some of the common traits etc, so I find it difficult to comprehend when other autistic people don't recognise the same in me.

For all I said about not having issues with conversation, social etiquette etc earlier, the one 'typical' thing I display is that I studiously avoid eye contact while making casual conversation. I didn't even realise I did it myself until my partner pointed it out to me, so what's weird is that I notice that in other people, without having the insight to realise that I do it myself. I think what I'm getting at is that I can understand why NT people don't typically pick up on my autism, because I don't really have any of the things that most people are aware can be typical behaviours of someone who is autistic. They only really see me in social situations, and that's not where I 'give myself away' so to speak. I just find it more difficult to comprehend how other autistic people don't recognise it after we've had a discussion and acknowledged some mutual traits, but now that you've pointed it out, it does make sense.

And again this is where the idea that "we're all on the spectrum" falls flat on its face because if we were all on the spectrum then the world we live in would be far more suited to autistic people and neurodiversity would be the norm rather than the thinly-tolerated reasonable adjustment.

There is a real lack of appropriate schooling for intelligent autistic children who can't cope in mainstream but don't fit special schools that are set up for children with learning difficulties or behavioural issues

This ^

With great big red shiny ding dong bells on! (sound muted for those who are sensitive)

Just about everything in a mainstream school environment is beyond difficult for most of our kids with ASD and the ability to have academic success.

Yes. I also struggled at secondary school with some of the more esoteric subjects, English Lit for example, despite being comfortably in the top 10% or so in terms of academic ability. Sciences, History, the more factual things, no problem at all, but I simply didn't 'get' subjective disciplines, they bored me to tears, so I switched off completely and did no work. There was no attempt at all made to try and reconcile the fact that I was a straight A's student in some classes and a complete delinquent in others, if I even bothered to turn up. You'd think that anomaly alone would have set some alarm bells ringing, but no, I was dismissed as 'difficult' and a trouble maker by 50% of the responsible adults, despite being a model pupil for the other half. I was basically told to leave and not come back. The total lack of recognition of my condition and appropriate adjustment cost me at least 50% of the academic qualifications, and subsequent opportunities, that I might have otherwise had. Then there was the constant, blatant bullying and physical assaults at the hands of other pupils, which the majority of teachers stood and watched, but chose to do absolutely nothing about.

" it's like trying to knock a square peg in a round hole "

EXACTLY that phrase has followed me through my whole life. At 11, at 20, in my 30s and now 40s. It doesn't get easier to hear.

There is a real lack of appropriate schooling for intelligent autistic children who can't cope in mainstream but don't fit special schools that are set up for children with learning difficulties or behavioural issues.
This is true and especially so (in my area) for girls.

My DS' former school had plans to set up a unit for children who were very able, and autistic. Although they had the building ready I understand that Ofsted objected because they thought the students should be integrated in the mainstream school. DS had left by then. Big opportunity missed I think as it was a school which catered well for more able students.

@FatimaMunchy

My DS' former school had plans to set up a unit for children who were very able, and autistic. Although they had the building ready I understand that Ofsted objected because they thought the students should be integrated in the mainstream school. DS had left by then. Big opportunity missed I think as it was a school which catered well for more able students.

It's a disgrace.

I've been lobbying MPs and whoever will listen now for 4 years on this issue.

I have 2 children who they think should be forced into unsuitable mainstream schools at the cost of their mental health, my eldest had a total breakdown.

It's not good enough. Our local education counsellor has acknowledged lack of sen provision in the area but says the money should be spent on gifted and talented. My son is cognitively in the top 5%, can't cope at school and as a society we have told him from a very young age that if he cant fit in then there is no place for him. I am praying he will manage college in due course. I've had to give up my job to educate my children because they couldn't cope.

This is where 'we are all a bit on the spectrum fails massively', it is the mantra that schools like to chant so that they can avoid spending and blame the child (and often parent) when the child can't cope.

This particular school was very good with children with autism. My DS was pretty average but found school really difficult.
He is 25 now and has continued education in his chosen field and delivers training.
Schools in general are not geared for children with autism, and so much depends on them fitting in with a system designed for neurotypicals.

I’m glad to read this thread, I think in the past I probably have been guilty of cutting people too much slack. After all, the things that were said about my sibling, and other people with autism and/or complex learning difficulties back in the 80’s was way worse than any well meaning ‘we’re all on the spectrum somewhere’ comment. Of course I was fierce back then and cut them no slack whatsoever.

It’s not the same as having you’re own DC with autism, none the less in many ways I felt oddly prepared when DS was diagnosed with ASD. I’ve watched my parents over the years be gently informative (but take no shit) which I probably should do more of myself.