"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.

lmao @ "ooh a rabbit!" Me & Psycho both do stuff like that (I did it in a very similar conv at LadyLaGore's once )

Absolutely nothing to feel about - I was just pissed off I couldn't see it.

They are perfectly normal! Loud and messy!!!! I am very lucky, I realise that when I read other people's stories. They have come so far!

did you ever find out where that phrase ds2 was repeating had come from? You said you were going to google it.

Nope. I got home and it was vague so I couldn't get a direct quote.

I did find a site about pocket knives with one of my attempts

I'm glad you weren't cross, I obsessed for DAYS about that!

Awww!

"I always leave going to the loo until the last minute, because I forget! I find myself dribbling or 'protruding' as I try to get upstairs I see this in the boys as well!!! Expect they sometimes actually GO in their pants!!!"
I had fairly frequent accidents until I was 15 and didn't even realise that other people would realise, even if they were very near me :b. Now I am not reliant on having to tell other people if I need to go, which has helped a lot (perfectly capaple since trained of going to the toilet but great difficulties in saying if I needed to go).

I've just realised I only replied to Davros in my head The ploughing own furrows sounds right

We had a big heart to heart when DD was about 18 months where she told me everything about her life. Nothin since. I have learnt how she will react to things, how I can handle it, how to make it easier. It helps a lot both with dealing with Flamechick and having Flamechick helps with dealing with her. our relationship is much better (imo) now I know.

It sounds as if lots of us (and I include myself in this) are not on the autistic spectrum but do have autistic traits - I think I've read somewhere that that's very common in family members of people who have autism. But I think it's different to actually being on the autistic spectrum yourself. IMO, anyway.

Very different, My dad has an awful lot of traits but I would not consider him to be on the spectrum.

That is a really interesting question (and has had some interesting replies naturally).

When my DS was beginning the process of DX the HV said to me it isn't an either/or thing - you aren't either on the spectrum or you are not - we all are. She described by imagining a scale of 1 to 10 with NT people at 1 but then you move on, for example, to the control freaky, super tidy, routine driven people at 2 who may have traits but not enough of them to cause a real problem to those with enough traits to make it obvious and then your move up to 10 in severity to the totally autistic non-verbal person at 10.

It doesn't have to be 1 to 10 scale, it could be 1 to 100 if you have trouble seeing 10 steps as enough - the numbers aren't the issue, it is the concept.

I thought that was interesting and I have to say that I don't think I have seen anything that disagrees with that. I would say my DS, who has a DX of AS, is about 2.5 to 3. In fact he is a good example as we were told by the clinical psych he had social communication problems but not badly enough to be given a dx of AS. He did finally get given that as a dx by psychs who had never met him, in the absence of the OT who I think would have argued for a dx of dyspraxia with social comms. problems. They only saw a list of behaviours on paper. They didn't see the boy at all.

I see some of his 'problem' traits in other people who are considered NT. I think that we are all different but different by degrees from the norm.

OOh I like a chance to 'discuss'!
This is just my unscientific suspicion (and please don't let it offend anyone I am musing) but I think that in the future it may transpire that there are different underlying causes of ASDs. I suspect that for some the ASD difference is to do with different neural wiring and down to genetics or differences in neurochemistry, but for others more along the lines of brain damage with the developing brain having to find its own way to self heal. To me brain damage(for whatever reason)is tragic and needs whatever therapy is available to help minimise difficulties and impairments. Genetically coded differences in brain chemistry and thinking could be considered like any other genetically coded difference - part of the individuals makeup and therefore to be celebrated.
This is how I rationalise the dichotomy within the ASD world.
Are we all on the spectrum? well I have been known to wonder this myself after all very young children have some behaviours that if you don't take account of their age could sound suspicious! I suppose if you think of the spectrum as a line with NT at one end and severe autism at the other then the analogy may work. But the spectrum is not two dimensional - or perhaps even 3 dimentional - there are so many variables! So no I don't think we are all on the spectrum. I suspect many may suffer some symptons that could be associated traits of ASD in others( ie sensory intergration) but that doesnt put them on ( or within) the spectrum mearly outside it. For instance I ( NT apart from probable dyslexia) get some temporary sensory symptons during/ following migraine. These symptons may also occur in individuals (like ds) with ASD. They are symptons that overlap different conditions but do not put me on the spectrum. Oh I've rabbitted on too much!

I think it is the title 'autistic spectrum' that causes some of the difficulty. If you just think of it as a spectrum of people ranging from 'normal' or 'average' to severely autistic, then it is easier to see the concept of a spectrum.

Maybe that is because of my experience of my DS. He isn't at the normal end, I don't think anybody disagrees with that, but there is some disagreement about whether or not he has stepped onto the autistic spectrum (if you see that as separate from NT people). I feel that his differences are easier to understand if you see him on a spectrum of social communication ablities rather than saying he is or he isn't NT because it simply isn't clear cut in the same way as it is for a severely autistic child.

I think it depends what you mean by traits. I think many on here are seeing autistic 'traits' as being something like being obsessive, finding social conversations difficult etc.

Whereas for me those are not autistic traits. They are observable behaviours which in the case of people with autism occur because of differences in perceptual and sensory processing.

Of course those of us without autism can show the same behaviours, but I'm not sure its for the same underlying reasons.

I'm not sure where the Broader Autism Phenotype fits in- but then generally it's really found in multiplex families who tend to have kids with AS/HFA. Maybe that's some sensory processing difficulties too.

Sorry Yurt, I don't understanding the differences between traits and behaviours. What do you see as autistic traits then?

Do all children on the spectrum have to have sensory processing problems?

I am not arguing by the way, I need to be educated!!!

I ask because that is not how I see DS's problems which makes me wonder even more if we have the right dx or even if I have any idea what is happening in his head. Either one is not good!

The basic Dx of ASD is around deficits/differences in social communication and social imagination. To me (no expertise) the definition feels a bit weak/ narrow! This may be because my son who may be atypical(and therefore my experience of autism may be atypical - but my mother worked in a school for children many- profoundly autistic). So I see a condition that affects cognition - thought processes, understanding, feeling, seeing, smelling, hearing, movement control -intention control -volition even etc. These other things are major things. So that is why I find the definition difficult. They are not core to autism but are core problems to my son.

Actually magso I think those things are core to autism- even thought they're not core to the diagnosis. It's those factors that result in the behaviours we then use to diagnose.

Niecie I see autistic traits as being the differences in processing and cognition etc that people with autism have, so to use the best known example; problems with theory of mind. Those differences then give rise to a series of behaviours we can diagnose as autism. However, anyone could show those behaviours at some stage but unless they're driven by the underlying problems (such as difficulties with theory of mind) then it's not autism. It's just a shared behaviour with a different underlying cause. I'm not a huge fan of the theory of mind hypothesis by the way- at least not as some overall explanation.

Thanks Yurt.

No, I don't think theory of mind is enough either. DS has it but not always - he can apparently be aware of others thoughts and feelings but not always.

Surely the only way to get evidence of the cogntive processes at play is by looking at behaviour? How do you decide what a behaviour that has autism as its cause and not something else?

I am in danger of going round in circles here, I think!

It interesting that it seems to be that those who are ready to accept a spectrum approach (and there aren't many of us admittedly) are those with AS children.
I think though, that it is more difficult with AS than with autism - the line between 'normal' and 'abnormal' is not so obvious.

As someone who 'ticks all the boxes' for Asperger syndrome (according to the psychologist ) it's always been interesting for me to read the different diagnostic tests and think "well, if you put them all together, they'd work well, but each one of them has a basic flaw in it".

Most miss the sensory stuff, but that's such a HUGE part of it for us. Yes, I can't guess what people are thinking, or read their body language, and I desperately need routine and predictability, and I can say rude things without meaning to and I love anything to do with facts. But the sensory stuff is there all the time - sounds, tastes, smells, textures, sights - and it's so overwhelming to live with at times. Yet it's not even on most of the diagnostic lists. This is a fairly typical whole set of the more negative of life-experiences for us (though it's not exactly the same for everyone ...)

Extreme focus on topics.
Anxiety if something unexpected happens.
Appearance and personal hygiene difficulties much longer than other people.
Autoimmune disorders.
Clumsiness or fine motor control problems.
Detail-oriented to the point of obsession.
Difficulty with "shades of grey" thinking. Tend to see things as absolutes, sometimes dramatically.
Face Blindness.
Literal Mindedness.
Loss of Speech or Writing When severely stressed.
Meltdown - May be silent and withdrawn or 'acted out'.
Need for predictability/Fear of surprises.
Have strong to obsessive interests.
Pattern Recognition Often very strong in perceiving patterns. Visual for some, words or behaviour for others.
Perceptual Sensitivities - May be unusually sensitive to certain kinds of sensory input - highly variable from person to person - examples: loud noise, esp, when repeated; strong scents or tastes; textures, such as food textures or the feel of certain fabrics against the skin.
Spends time working out social interactions in detail ahead of time.
Social Exhaustion - Social interactions are experienced as exhausting even when pleasurable.
May be highly visual or highly auditory
Women often not perceived as conventionally feminine.
Social thinking difficult, emotions limited, gestures used poorly if at all

That is a pretty exhaustive list there, Amber. Thank you

Do you think there is any one (or two) of those that is unique to ASD/AS, without which you wouldn't be able to give a dx?

Extreme focus on topics. - yes
Anxiety if something unexpected happens. yes
Appearance and personal hygiene difficulties much longer than other people. yes
Autoimmune disorders. Unsure what this means but don't think it applies to me.
Clumsiness or fine motor control problems. Yes
Detail-oriented to the point of obsession. Yes
Difficulty with "shades of grey" thinking. I am very clear in my mind as to what I believe is right but believe others have the right to put their point of view across.
Tend to see things as absolutes, sometimes dramatically. Yes but see above.
Face Blindness. Yes
Literal Mindedness. Can be but my love of reading has helped a lot.
Loss of Speech or Writing When severely stressed. Writing is a lot easier most of the time, speech is difficult to initiate at least a lot of the time, not non verbal but have difficulties regardless of external factors.
Meltdown - May be silent and withdrawn or 'acted out'. Silent and withdrawn.
Need for predictability/Fear of surprises. Like to know what's happening if possible.
Have strong to obsessive interests. Yes.
Pattern Recognition Often very strong in perceiving patterns. Visual for some, words or behaviour for others. Probably verbal for me.
Perceptual Sensitivities - May be unusually sensitive to certain kinds of sensory input - highly variable from person to person - examples: loud noise, esp, when repeated; strong scents or tastes; textures, such as food textures or the feel of certain fabrics against the skin. Yes.
Spends time working out social interactions in detail ahead of time. I will prepare inm yhead what to say if meeting someone new or that I haven't seen for a while or trying to get out a question I need to ask, but other than that I don't think about it, ever realised I was supposed to.
Social Exhaustion - Social interactions are experienced as exhausting even when pleasurable. Yes.
May be highly visual or highly auditory In thoughts? Visual with some auditory, everything is like a film.
Women often not perceived as conventionally feminine. Yes.
Social thinking difficult, emotions limited, gestures used poorly if at all Yes.

For myself I can give a brief description as best I can of going to get Ds2 from playgroup and how I see and perceive things and react to things. This is how it is every time I collect him, how it is for me every day when I look at things or experience things.
I walk through into the gardes and play area and see that several other mums are waiting, talking in a couple of groups. I move past them, go to stand in the spot I always stand in, a bit away from them. If any say "hello" to me I'll say "hello" back but I don't initiate it. I know that socially I should, but I have ever had the urge to fit in enough that I will force myself to make the effort.
I look at the tree in front of me, I always look at this tree, my eyes focus automatically on one of the leaves on it and then I am caught up looking at the lines and spots on this one leaf, everything sharply defined, no peripheral or depth differences like JimJams spoke off, but the sight of it dominates everything else. If someone expects me to speak or take any notice of anybody else they will need to approach me first. For others waiting the need to talk to others, to be seen as fitting in or just because they like being friendly may matter, to me I can not stop looking at tiny details in front of me, or stop daydreaming (yes, I am a very good daydreamer ).
The door opens and Ds2 is called. I go in to meet him, need to be more social now, need to be polite and see how things have gone. I say the same phrases almost everytime, down to the exact words, "how has he been?" "oh good" "I see", perfectly normal ways of speaking that come as if by rote. I get Ds2's coat and my eyes focus on the zip, can't do the zip up, feel my fingers fumble, try to tug at the metal, my eyes focus on the grooves, again I know there's stuff going on around me but all I can focus on is that bloody zip.
I get it zipped up and Ds2 and I walk out. I find my eyes focusing on the hair on his head, then on the rest of him, watching his small body walk determinedly beside me. My range of focus always widens when the lads are with me, attention drifts to them and the small area immediately besides them.

Jimjams, hope you don't me posting on your thread as I definitely don't have a scientific background so I'm going purely on gut instinct but fwiw, I think that...

There actually is a continuum or spectrum running from NT to the HFA end of autism. This instinctively makes sense to me. My DS1 shows many, many behaviours which appear on Aspergers/HFA checklists. He has actually been assessed by a dev. paed. and was assessed to NOT be on the spectrum but his mindset or behaviour is definitely somewhat out of kilter with the average child his age and always has been. It's as though his behaviour isn't severe enough to be officially HFA but isn't "NT" enough for him not to have difficulties with school and social situations. I just don't think autism is an on/off switch where you either are or aren't. I also fall into the category of people who think that sexuality is also a spectrum.

Having said all that, what doesn't feel true to me is that HFA and more 'severe' forms autism are on the same spectrum. When you describe your son's behaviour/thought processes it doesn't resonate with me, doesn't sound familiar, doesn't reflect at all my DS1's behaviour.

I am very interested in jimjam and bullet123's posts on this 4th page especially. My brain is saying "thank you"

So autism is...

• in essence, a sensory and processing disorder,leading to varied experiences, some unknowable to NT people, some like those described eloquently by Bullet above.

• as a result of those differences in experience, the autistic person may or may not display a number of behaviours or "traits", most or all of which could arise from any number of other causes.

Have I got it?

So the problem is that the professionals are defining the symptoms as the illness. Which is like diagnosing "vomiting" (a symptom) as opposed to the actual illness causing it. I believe an analogous confusion underlies our "diagnoses" of the psychotic "illnesses" too....

As to the original question, it would make perfect sense for people to say "we all display so-called autistic traits sometimes". It's consistent with what jimjam and bullet are saying. But the public would need to understand that the traits happen to arise because of the underlying processing/sensory disorder, not because of other issues.

Please tell me I've got it and I'll be able to reread all the websites on ASD in a totally different light....

chisigirl - that is exactly the same situation I have with my DS and exactly why I believe there is a spectrum running from NT to severely ASD too. But you said it much more succinctly than me.

That said we DO have a dx because although the consultant paediatric clinical psych said not enough evidence to call it AS, the review team decided to give him the AS dx, despite not having met him and despite several important people not being there, namely the OT. I wish I had my wits about me at the time to question it at the time.

I don't recognise my DS from the lists either but I do recognise him in the list on the Dyspraxia Foundation website. There are huge overlaps in symtoms with many of these conditions which lead me to ask the question about whether there were any traits/symtoms/behaviours unique to AS.