On the spectrum

[Tessa K]

They're not all conditions people are born with in your list. Alzheimer's definitely isn't.

Some people may be prone to depression or anxiety all their lives because of the way their brains work while others may experience them occasionally as a response to external factors. PTSD causes non-typical brain responses, how does that fit in?.

Some behaviours such as addiction or eating disorders can be treated - and in many cases cured - others can't. At best they can be managed, eg ADHD or schizophrenia.

So can some people have a kind of transient ND? I don't think so.

Firstly, it’s an interesting and as far as I know unresolved question as to whether someone was or was not born with some conditions. For example, the symptoms of bi polar disorder might not be obvious until someone is an adult, but arguably their neurology might always have been atypical. The same could be said for many other conditions.

But more importantly, I don’t see why it should matter. It seems to me to be ridiculous to to, for example, describe someone with agnosia as ‘neurotypical’. Their brain has been altered by a stroke and they can no longer recognise everyday objects. The same applies to Alzheimer’s, certainly someone may not have have had symptoms until old age, but it would also seem very odd to describe someone with Alzheimer’s as being neurotypical. Their brain is being altered from within with the result that, for example, they can’t form new memories.

Alzheimer's is a disease that affects the brain, not a congenital brain state. It's a completely different category. Not everything that affects the brain is a divergence.

Yes, some people's traits become more obvious around puberty but that's because of the brain interaction with hormones and other biochemistry bringing out what was already there.

[Boustrophedon]

It's a spectrum, that implies a continuum and not a 2 dimensional one at that. So given a continuum there will be no any hard boundaries, no dichotomies, so unhelpfully it must include everyone.

We all, I hope, accept Introvert and Extrovert as descriptors, whilst still accepting that there is a continuum between the two with most people somewhere in the middle. Thus we stray into arguments akin to the Myers Briggs discussion, some dismiss it for implying dichotomies, whilst others accept that there are no hard and fast boundaries, but that is is otherwise useful. Same goes for ASD, there are many dimensions many descriptors of the condition.

Then there is the 'Autism Plus' argument. This is mainly promulgated by articulate parents to describe their children who are diagnosed on the spectrum. Other people cannot tell their child is autistic because, they say, it takes an expert to tease out the subtle tell tale behaviours and the general public, you and I, cannot tell just by observing a child. Further they argue that those severely affected, quite visibly so, have autism 'plus something else'. Autism for them is a 'high functioning' condition with only mild social difficulties and lacunae. I have had to block some proponents of autism+ on Xitter for organising a pile on to me for suggesting otherwise. Hell I taught in a SEN school for years, but what do I know? As a general principle I taught all the children there assuming they were autistic unless proven otherwise, there being no downside to this, sometimes a diagnosis would come just as they were leaving in yr 11.

[Al Capone Junior]

Despite probably being 'neurotypical,' I'm probably also, albeit ambiguously, on the spectrum to some degree also.

[Tessa K]

The last month has been a rollercoaster, finally putting the pieces together, doing a ton of research and self testing and dealing with the outcomes. So, yeah, hello autism.

It's been hard thinking about how life would have been different if I'd known earlier.

It's mainly being around so many ND people in rhe last year or so that prompted me to do it.

I've learnt a lot about how it's very different for women in terms of diagnosis, social attitudes and unmasking.

There's been a lot of recognition from my research about my own behaviour/traits. A lot of 'Oh, I thought everyone did that'.

I also have dissociation (derealisation) and RSD.

There have been some tough, brain exploding moments but I'm slowly making friends with my brain.

One friend asked if anyone who knows me was surprised when I told them. Er ..no.

[Woodchopper]

I stumbled upon this article which covers a lot of ground in this thread.

Against neurodiversity
https://aeon.co/essays/why-the-neurodiv ... me-harmful

[Tessa K]

I stumbled upon this article which covers a lot of ground in this thread.

Against neurodiversity
https://aeon.co/essays/why-the-neurodiv ... me-harmful

Some good points here. The ND movement does some good in making ASD more widely known but, as the article says, it does focus on people who need lower levels of accommodation to the detriment of those who need high levels.

Calling it a social problem rather than a developmental problem has an element of truth in that it's social attitudes that can make people's lives harder. However, as the article says, this attitude can turn people off medical research and cause a mistrust in science.

I wouldn't identify with any kind of 'movement ' that claims to speak for me. I'm glad there are now resources for women and that it's easier to find other ND people but I do reject the 'differently normal' attitude.

The DSM is not the gold standard as it is often years behind actual scientific finding (eg its classification of homosexuality).

ABA is not the cure some people tout it as. It's pretty brutal.

Devon Price's book Unmasking Autism is good on the history of both scientific and social attitudes to autism as well as ABA and identifying how it's very different for women in many ways (not neurological though).

Am I wrong to be cynical about the fact the Movement is American, a bit hippyish and bourgeois?

[Tessa K]

Also I don't like 'differently normal' but I am in favour of normalizing difference, ie making it more acceptable, reducing stigma.

[bjn]

Just trying to get my thoughts on that article together.

First off, I think high functioning ASD is likely massively under diagnosed because it is much less obvious. There are only 2 formal diagnoses for ASD among my immediate blood relations, when it should be at least 6. If those two are ASD, then dammit, the rest of us are as well because the criteria they got diagnosed on we all exhibit in spades. In my experience, diagnosis for high functioning ASD folks often happens when things fall apart and help is sought after ending up in mental distress. The article does say numbers for each bracket are hard to come by, but has the CDC saying 40% of diagnosed cases can’t speak. I’d posit that it’s much more pyramidal, with more Level 1s than 3s.

I’ve seen several people with ASD broken on the wheel of societal expectations, especially schools. So while it’s much better at accommodating ASD folk than in my youth, it isn’t accommodating enough.

The range of ASD in my family goes from what could be called a difference all the way to an actual disability, because it impinges significantly on ability to function day to day. Lower functioning ASD seems almost a difference in kind again, if a fairly high functioning ASD sufferer can’t cope, it must be hell for someone with Level 3. ASD can certainly be a disability.

Speaking for myself, I’m fairly comfortable in my skin now. Realisation that I’m ASD was an ah-ah moment for me, I no longer beat myself up. I’ll still struggle to do certain things, but forewarned is for-armed and all that. I’d certainly like to be able to do those things easily, but if that were to take away from who I am, I wouldn’t want it. ASD is me, and the me that I am is generally OK. However I’m not stupid enough to think what applies to me applies to everyone else.

I do feel a degree of a kindred with other high functioners I know, I tend to be able to talk to them much more easily and I’m more relaxed. I can’t find the reference, now, but I read something that showed ASD folk could communicate with other ASD folk pretty much as well as neurotypicals could with each other. I can’t recall the level of ASD in the people they sampled, but I doubt it was level 3. Then again, it might have been a bit of activist propaganda.

I’ve just started Devon Price’s book today. Interested to see where it goes.

Also, what Tessa said about middle class Americans.

[Tessa K]

Just trying to get my thoughts on that article together.

First off, I think high functioning ASD is likely massively under diagnosed because it is much less obvious. There are only 2 formal diagnoses for ASD among my immediate blood relations, when it should be at least 6. If those two are ASD, then dammit, the rest of us are as well because the criteria they got diagnosed on we all exhibit in spades. In my experience, diagnosis for high functioning ASD folks often happens when things fall apart and help is sought after ending up in mental distress. The article does say numbers for each bracket are hard to come by, but has the CDC saying 40% of diagnosed cases can’t speak. I’d posit that it’s much more pyramidal, with more Level 1s than 3s.

I’ve seen several people with ASD broken on the wheel of societal expectations, especially schools. So while it’s much better at accommodating ASD folk than in my youth, it isn’t accommodating enough.

The range of ASD in my family goes from what could be called a difference all the way to an actual disability, because it impinges significantly on ability to function day to day. Lower functioning ASD seems almost a difference in kind again, if a fairly high functioning ASD sufferer can’t cope, it must be hell for someone with Level 3. ASD can certainly be a disability.

Speaking for myself, I’m fairly comfortable in my skin now. Realisation that I’m ASD was an ah-ah moment for me, I no longer beat myself up. I’ll still struggle to do certain things, but forewarned is for-armed and all that. I’d certainly like to be able to do those things easily, but if that were to take away from who I am, I wouldn’t want it. ASD is me, and the me that I am is generally OK. However I’m not stupid enough to think what applies to me applies to everyone else.

I do feel a degree of a kindred with other high functioners I know, I tend to be able to talk to them much more easily and I’m more relaxed. I can’t find the reference, now, but I read something that showed ASD folk could communicate with other ASD folk pretty much as well as neurotypicals could with each other. I can’t recall the level of ASD in the people they sampled, but I doubt it was level 3. Then again, it might have been a bit of activist propaganda.

I’ve just started Devon Price’s book today. Interested to see where it goes.

Also, what Tessa said about middle class Americans.

I read something that showed ASD folk could communicate with other ASD folk pretty much as well as neurotypicals could with each other.

That's my experience too. I'm lucky to know a lot of ND people of various flavours and to have understanding NT friends but I also mask a lot socially so people who don't know me wouldn't see the effort it takes.

Some people reject the high/low functioning labels as they indicate how well we are able to be acceptable to NTs. They prefer to talk about the level of support needed.

I don't know anyone with Level 3 but I do know some with severe ADHD and that's a f.cking nightmare for them especially as they have a side order of autism.

I'm pretty sure my dad (now dead) was on the spectrum, it makes sense of a lot of his behaviours.

[nezumi]

The thing about being able to talk to other autistic people easier is called the double empathy problem.

https://www.autism.org.uk/advice-and-gu ... le-empathy

[Tessa K]

The thing about being able to talk to other autistic people easier is called the double empathy problem.

https://www.autism.org.uk/advice-and-gu ... le-empathy

Yes, it's often expected that we will make all the effort to 'fit in', hence the tendency to mask, especially among women.

Some NT people are prepared to make the effort both socially and in terms of educating themselves but too often it's expected that we will educate them or do all the social work on ourselves.

Employers who make accommodations aren't actually changing anyone's mindset (or theory of mind).

[Tessa K]

Differences between male and female autistic brain development

https://www.sciencealert.com/there-are- ... ith-autism

[Gfamily]

I found this interview with Chris Packham and his partner interesting. There aren't many people in the public eye who have been quite so open about being ND and how they see it.
https://www.theguardian.com/society/art ... lationship

[Tessa K]

I found this interview with Chris Packham and his partner interesting. There aren't many people in the public eye who have been quite so open about being ND and how they see it.
https://www.theguardian.com/society/art ... lationship

He has been a strong advocate for autism awareness the last few years.

This is a good point from his partner

. If you’re not careful, you can start forfeiting aspects of your own needs and end up orbiting them.

One thing I've noticed among people I know is that an ND-NT relationship can be easier to navigate if both make an effort than a relationship where one is autistic and one has ADHD. I have some experience of that myself. Obviously it depends on how pronounced each person's traits are but it can be a really tough challenge.

[raven]

I'm a bit late to this conversation -- actually just idly searched for ASD on here because I've got a family member whose kid got diagnosed this year after very much hitting a wall at school -- and so I've been doing a bit of reading around about it.

Not sure how much it'll contribute but perhaps a little history might clarify spectrum idea? (Anybody more knowledgeable feel free to dive in and correct me if I get something wrong...)

Anyway, as I understand it, way back in the 50s or earlier, autism was a diagnosis applied to a group of severely affected, often non-verbal, sometimes institionalised patients who displayed repetitive behaviours. Sometimes they had metabolic disorders, I think, or other genetic conditions that had perhaps caused the symptoms, but the symptoms were labelled as autism.

At the same time, Asperger was over in Austria identifying a bunch of patients, children, less severely affected but who had difficulty making friends, were sometimes clumsy, sometimes had issues with speech and letter reversals etc etc. That became Asperger's syndrome.

It, like dyslexia, dyspraxia, ADHD, PDD-NOS etc (with all of which there can be a lot of overlap I think) is defined by a description of symptoms/difficulties, because the brain is a black box that we don't understand. These are termed 'neurodevelopmental' disorders 'cos they clearly relate to some difference in the way the brain has developed, even if we don't know what that is.

Anyway, eventually people noticed the commonalities between autism, Aspergers, PDD-NOS etc, and the idea of lumping those all together on a spectrum came about. So we aren't 'all on the spectrum' at all. The spectrum was meant to be a spectrum that covers those diagnoses, from severe to mild.

And now we have the wheel - which I think is a much more practical way of looking at it, by where the areas of weakness/strengths are. That's easier to gear to where you need help.

Dunno if that adds anything, but that's how I think about it.

I have mixed feelings about all the online self-testing going on. It's difficult, because you don't want to exclude people getting that lovely 'ah-hah' moment of diagnosis that makes everything make sense, but you also don't want to see the diagnosis diluted. I was acutely aware of that issue with son#1, who is pretty mildly dyslexic but needed extra time & I'm sure school viewed us as pushy parents who couldn't accept he wasn't a genius. But they had no idea how much support he got at home, or that he had the writing speed of a 10 year old. But, as I read somewhere on a dyslexia forum, extra time doesn't actually supply you with the answers, it just levels the playingfield so you can finish writing them down.

@Aoui - thank you for what you wrote. I wish I'd read the story about your husband earlier. I tend to something similar to what that girl did. I'm always finding things the kid that just got disgnosed with ASD does that my kids did, or I did as a kid. It's the way my mind works, looking for traits in common. I hoped that would reassure the parents, make them feel less alone, but it didn't, it just made them feel like I was minimising the ASD. Which I wasn't meaning at all. I have to watch that in future.

[raven]

Oh, before I forget, if you didn't catch Chris Packham's documentary on this, it was very good:

https://www.bbc.co.uk/programmes/p0bbnh47

And I found the explanation of ASD in this article very useful:

https://neuroclastic.com/why-autistic-k ... d-phobias/