"we're all on the spectrum" - what do you think?

[jimjamshaslefttheyurt]

I've never agreed with the above statement.

For someone like DS1 his way of thinking (without language), his way of processing (he probably cannot process speech to any great extent, he sees things differently- without depth and using a lot of peripheral vision), the way he remembers (with a limited sense of time, and by association) is so wildly different from ours that it truly is a different planet.

I also think that if you think we've all got a bit of autism, then there's an idea that you can push someone from the spectrum into 'normal'. That 'normal' is a obtainable and wished for goal. I've observed that many who are high functioning don't want to be NT, there is a developing autism culture and they want to be part of that, and have that culture respected alone, not as being a second class version of normal. They don't see themselves as almost NT, they see themselves as different.

Would be interested in others views on this. It's something I hear quite a bit and I wonder whether I'm just not seeing it from a high functioning perspective. Or am I over analysing and is it just a way of those of us who are NT showing some respect for autism in a kind of 'oh they're human too' type way And if so should it be encouraged?

A philosophical question for a Friday morning. But an interesting one I think. I have my mind open and ready to be changed.

I think autistic behaviour is still human behaviour - everyone has sensory issues to some extent, everyone is a visual learner to some extent, everyone has obsessions and rituals to some extent etc. But as a 'political' statement I think 'We're all on the spectrum' is not helpful or accurate as it waters down the reality of what an ASD disorder actually is. If all children were on the spectrum, it wouldn't be the struggle it is to get services and education. The fact that our children are a minority means that they can be isolated and ignored.

Do you think we can imagine autistic sensory issues though. I can't imagine what it would be like to hear speech and not be able to decode it, or to be unable to initiate movement, or to prevent compulsive movements.

Tito is an auditory learner, he barely uses his vision at all. He can describe his perception of the world, but its fragmented in a way I can't begin to imagine.

I've never agreed with that idea either tbh. To me it's a bit like saying that we're all on the spectrum of blindness because lots of people have a bit of short-sightedness or need reading glasses as they get older. It's not the same thing at all.

My two are both at the high-functioning end of the spectrum but there is still a big difference between them and NT children of the same age. They have found ways of adapting, coping, and even hiding it but I still wouldn't class them as almost NT.

I see similarities between the autism culture and the Deaf culture. There are a number of people out there who view their deafness as a very positive thing. They have their own language and their own culture etc. There are also the stories of some wanting their children to be born deaf. It's great that they see it as a positive thing but there still needs to be help and support out there for people whose deafness is a barrier between themselves and the rest of society.

I'm rambling now.

I don't think that believing everyone's on the autistic spectrum means "normal" is obtainable. That's like saying anyone can change the colour of their skin.

Your DSs experience of autism is probably as different from my cousin's as my cousin's is from my experience of life though. I also do think that many people have autistic type characteristics but only 1 or 2 which slot nicely into the vast range of human behaviour anyway.

Clearly there are people with no autistic characteristics so I guess it's the fact that there appears to be a full range from none up to loads IYSWIM and this is what gives the impression that we all appear there somewhere. If you view is as looking something like the centile charts in a red book, which it isn't really.

I'm not sure, tbh (not sitting on the fence, honest )

Sometimes, i can see so clearly why dd1 behaves as she does - I behaved in a simialr manner when very young, the difference being i did not have a speech disorder so could explain (in convoluted 4 year old logic) what i was doing. i still have issues now. I do know what it is like to want to do something but be unable to initiate the movement, it has happened several times to me. I have very clear memories of the thoguht processes behind it, and willing my arms/legs to move, but the message just not gettign through.

I have no idea where dd is is on the spectrum. she has elements of high functioning (dislike the high/low distinction, but no other way to describe it) but she is at the same time, very clearly and quite severely autistc.

I'm not sure if your statement "I also think that if you think we've all got a bit of autism, then there's an idea that you can push someone from the spectrum into 'normal'" is how I'd view it. I can clearly identify autistic traits in myself and in most of my family. But I do not think that I push dd into "normal" - I don't think that "normal" is achievable for her, despite her apparent high functioning. Her differences are too many.

i think there is an element of over-analysing. My father was always thought of as "odd". the same for my brother. I have little doubt that they would both get a HFA dx if one had been sought. I think my other brother and I skate a very fine line between NT and AS.

there is, of course the question (obvious dx's and traits aside) of what is normal anyway. I don't try to push dd into being normal, but i do want her to function to the best of her abilities, wherever that takes her.

Last night at the Hanen program, we had to do a spelling test while loud music was playing, lights were being switched on and off etc, - oh and we had to balance a bit of paper on our heads ! A bit weird but was meant to show us what sensory overload is like. Having said that, the words were easy ones and though it was a struggle, not many got the words wrong.
ASD children can focus and tune out distractions ( too much so at times) but for my DS1, he would lack motivation to do a task like that as he would not care if people thought he was stupid for failing a test.

I do not like or agree with that above statement (title of thread). It diminishes the difficulties that Ds1 has. It diminishes the difficulties that I have (and I do hold onto the ND concept but also accept that there are negatives to my Aspergers and Ds1's autism as well).

I can see how that shows overload, but it doesn;t show what its like to only be able to mono-process etc, so it perhaps tricks us into thinking we know what it feels like when I find it helpful to remember I don't understand ds1's world at all.

I used to get cross with him for not walking under certain trees until I read Lucy Blackmans book about how trees can mess up the light and mean that underneath them she loses all sense of where her body is in space. No wonder he used to scream if I tried to get him under them. Likewise I used to think that he touched things to be compulsive. The in Lucy's book she described how she had to touch stuff to see it and if she didn't touch it she didn't see it.

My comments on 'making normal', come from the experience of mainstream where there was zero comprehension of ds1's sensory processing difficulties and where IEP's etc had the clear aim of getting him to fairly pointlessly do tasks because they were 'normal' and the aim was always the same as the other kids. At his current school no-one pays the slightest attention to what normal kids his age are doing, the targets and aims surround functioning and independence.

"Do you think we can imagine autistic sensory issues though. I can't imagine what it would be like to hear speech and not be able to decode it, or to be unable to initiate movement, or to prevent compulsive movements"

n the infrequent occassions I have understanding difficulties it's as though I'm hearing the words in a foreign language. Rather embarrassing when it's something very simple being asked .
With regard to difficulties with initiating movement and speech, it's as though there's a locked door in my mind, as though my mind is so busy thinking of what to do it doen't get on with actually doing the task. This can happen at any time, happesn very very frequently. Eg I went to a small party recently ,felt very relaxed, very at ease, quite ok, until it came to I felt hungry and there was a pot of curry only few away from me and I couldn't ask for it or get up and help myself for it. I spent what seemed like ages thinking about getting something to eat and I couldn't until somebody else asked if I wanted any.
I don't have compulsive momvements, I mean I like to stim and I find myself doing it almost unconsciously, I'll just get the urge to do it, but I wouldn't say that classed as an involuntary movement.

Thanks bullet I was hoping you would see this - I sort of suspected that many in your position would see it that way, but I wasn't sure if I was applying my experience of one end of the spectrum to the other.

I wonder if anyone on the spectrum does agree with the statement. Hmm, I don't think I've ever heard anyone with AS or HFA say it.

With regard to the mono processing I'm not sure if this is the same thing, but it's one reason why it would almost certaintly be dangerous for me to drive. I will hyperfocus on something I am doing to the complete exclusion of other things. I would watch my hands on the wheel and not the other vehicles on the road. I would check the speedometer and not be able to think about what to do if there was a sudden change of route. Ds also has this intense focus on things, he gets very absorbed in what he is doing.

" I spent what seemed like ages thinking about getting something to eat and I couldn't until somebody else asked if I wanted any."

That's exactly how I've seen others describe it (especially with non-verbal individuals typing)

By involuntary movements I mean things like sitting down with ds1 to do some work, then 2 rooms away there's a noise (microwave goes on, letter through the door etc etc) and he has to dash off and see it (unless I prevent him which is not popular!). Or Lucy Blackmans description of seeing a Mc Donald's and typing to her carer/facilitator 'don't let me force you to go to McD's' whilst at the same time shoving her through the door. She didn't want to eat McD's but had no way of avoiding going through the door once she saw the sign!

I think that the same bullet but I think it gets more severe with the spectrum iyswim. So Tito hears to the exclusion of everything else. he can look at something but any auditory stimulation cuts out his vision. If he's presented with a sound and visual signal at the same time he can't see the visual stimulus until there's a pretty large gap between the sound and visual stimulus,

bullet, that's exactly what I meant re inability to initaite movement. At times, i find myself thinking very hard abut doing something - I can visualise the whole thing. But it does not translate into movement. I have ended up in similar situations at parties etc, and just in day to day life, too.

i am also unable to differentiate sounds. I cannot function if there are too many different sounds about - even, sometimes, both dds talking to me is too much. I just cannot process the separate strains.

I can't figure out who Tito is - am I being very dim?

I can see similarities both in myself and in DH to DS1 (very HFA) and DS3 (more towards the other end of the spectrum).

But I don't think that equates to "everyone being on the spectrum". FWIW I don't think I would now or would ever have got a dx of HFA or AS myself. I think DH might however.

I actually find it quite annoying when people make this statement. Most people are not very like my DS3. Jimjams' DS1 does sound very like him, however! I'd love you to meet DS3, Jimjams, and I'd love to meet your DS1!

DS3 is compulsive about sounds now. Like the toilet flushing. If he is in earshot while the cistern is refilling, he has to go and flush it again.

I can be obsessive about certain songs and I certainly was very obsessive about songs when I was a child (I remember replaying Life on Mars as many times in a row as I could before someone stopped me) but to me that is nt whereas being compulsive over a toilet flushing is autistic.

I don't actually find either not being able to help yourself to food at a party or not being able to tune out certain sounds to be anything other than neurotypical? Don't those things happen to everyone? Isn't the former just to do with social pressure and being shy? And the latter just to do with being easily distracted?

Agree with Cyber and Bullet. Fortunately I've only ever come across this statement online, not in real life.

SSB - I think there is a difference re:food scenario - that it might be normal to feel awkward/social anxiety in some situations (e.g posh party/party with work colleagues or in-laws that you don't feel 100% comfortable with), but that if the difficulty was spectrummy it would apply when someone felt at ease - so it is more of an executive function issue than a psychological problem with someone on the spectrum.

i think I am more ambivilant about the statement because I spent my whole life, right up until I had dd thinking I was NT (or rather, not thinking about it as I didn't know there was anything to think about). And thinking that, despite my oddities, other people probably had oddities of their own.

It is only now, havign read so much about it all, and gonethrough the dx process with dd, that I know that i would not hve been regarded as NT if at any point I had been taken to a paed. I also knew that my brother had his peculiarities, and that just contributed to my "all people are different" viewpoint.

I don't like the thought that we are all ascribing to be normal anyway. I am not anxious for dd2 to be normal. i want both girls to get the best out of life for them as individuals. It is currently apparent that dd1 will need a lot more help to become independent (if she ever does). But I do not think of it in terms of being normal, just being able to access what she wants to access.

in all seriousness, what is normal?

Yes, I see the distinction you are describing, TotalChaos.

SSB - re:toilet flushing V music on repeat. I have always understood that OCD type rituals are not pleasurable to the sufferer. So playing a track because you enjoy it would not be an OCD TYPE COmpulsion. Not sure if there is a wider definition of compulsion outside the OCd context...

SSB, no not about being easily distracted re: souunds, or shyness re inability to move. I have experienced the inability to move when in a room full of my closest family.

The sounds thing - I am not distracted by the dds' chatter. i really cannot function. Equally, i cannot have a radio on and talk to someone. the levels of noise and input are equal. i cannot distinguish between them, and therefore cannot work out which word belons to which speaker. I cannot answer as i do not know what has been said.

It all gets to a point where all I am aware of is noise, noise, NOISE - no idea what it is or where it is coming from.

i find dinner parties (or even dinner sat around the table with famly) exhausting as I have to concentrate so hard on whatmy neighbour is saying to me, to be able to work out what is being said.

Interesting thread. I often hear this in work - they all know that DS2 has asd and I would chitter about this and that and at some point in the conversation, there would be the usual "Well, we're all on the spectrum somewhere". I wonder is it to normalise it all to ease their own discomfort? Just pondering?

I think for DS3 it is the sudden absence of sound that he finds unbearable. He also hates having music switched off (or on) and the TV switched off (or on). Going from one to the other is very difficult for him.

silverfrog, I am a bit like that - I have to get the DSs to be quiet if I want to do something like read a map and I get like that at dinner parties too - I find I get very dizzy and spaced out with the effort of concentrating on hearing the person next to me. I think the fact that I am quite hard of hearing doesn't help. It's quite horrible though.