On the spectrum

[Tessa K]

Some friends of mine who have ADHD and/or autism say they're fed up hearing that everyone's on the spectrum, often said to try and make them feel better.

Yes, some people do have very minor sub clinical ND traits or behaviours which could have their root in ND or maybe other causes.

But how useful is it to regard ND as a spectrum if everyone is on it? Is it just current thinking, a trend or an outdated approach?

I'm just starting to think about this so I hope this makes sense.

[IvanV]

Experts have said to me, you are either on the spectrum, or you aren't. The spectrum is the range of presentations, for those who are on it. It is not the case that you can be slightly on it.

But then when you look at how they test for it, then, as you say, many people will give some of the answers that are classical for those who are on it. And I don't know quite how to reconcile those facts.

The point of identifying people who are on it is making reasonable adjustments for them, and giving them the different assistances in education that will help them make the best for themselves, relative to the neurotypical. But evidently some can get away with much smaller reasonable adjustments and assistances than others. I say this in the context of my own daughter being on the spectrum, but requiring only modest adjustments and assistances in comparison to others one comes across. So there is a question of proportion that needs to be considered. When previously it was mainly those who required very large adjustments and assistances who were identified, and now we are finding many who are on the spectrum, we shouldn't consider that this is always a large thing requiring large adjustments. And perhaps the identification can be done with a bit less fuss.

On the one hand it is good that we are now identifying many, and people are not unhappy to be identified. The issues of bullying, discrimination, that were once common become less likely, when it is common. Like homosexuality, etc.

And it is reassuring to people, like my daughter, to know why they are like they are. But the issue you mention of people, with a few parallel behaviours, if what I say up front is correct, then they aren't "a little ND", because that makes no sense, if what I said at the start is correct. We all need to come to terms with who we are and our own strengths and weaknesses.

[Tessa K]

Some people I know were only diagnosed as adults and have struggled for 30 or even 40 years so getting a diagnosis is a really big deal for them. They've mostly been masking all their lives, sometimes even from themselves, so it can be very hard to adjust to the new 'identity'. It's also much harder to get an adult diagnosis as limited NHS resources are given more to kids.

One thing they say they find hard is when NT people say they have some of the same traits but the ND person has them all the time and 100 times worse so there is a big impact on their lives, not just an occasional lack of focus, for example.

What you say about people who are ND being on a spectrum, not the whole population, makes sense. Do you think it's a misunderstanding by people in general? A half understood fact that has become widespread?

[bjn]

Like Ivan, I have formally diagnosed relatives. FWIW I'm pretty certain I'm a high functioning autist myself, but at 59, I'm not sure what getting a diagnosis would achieve.

People usally mistake 'spectrum' for a grey scale, with 100% 'normal' people at one end, and highly disabled autistic people at the other. So when an NT person says they say 'on the spectrum', they usually think of themselves as just very lightly grey. As Ivan says, it's a range of traits, which you can have a sampling of at different intensities, so no two ND people face the same issues. It is like combining multiple frequencies of light to make a specific colour. Which leads me to question the "you are on the spectrum or not" idea, where is the cut off for a presentation to be considered on the spectrum or not? Of course, some people are severely impacted and others don't notice anything particularly.

[Tessa K]

Like Ivan, I have formally diagnosed relatives. FWIW I'm pretty certain I'm a high functioning autist myself, but at 59, I'm not sure what getting a diagnosis would achieve.

People usally mistake 'spectrum' for a grey scale, with 100% 'normal' people at one end, and highly disabled autistic people at the other. So when an NT person says they say 'on the spectrum', they usually think of themselves as just very lightly grey. As Ivan says, it's a range of traits, which you can have a sampling of at different intensities, so no two ND people face the same issues. It is like combining multiple frequencies of light to make a specific colour. Which leads me to question the "you are on the spectrum or not" idea, where is the cut off for a presentation to be considered on the spectrum or not? Of course, some people are severely impacted and others don't notice anything particularly.

From what I've read of testing there's a threshold; if you have a certain number of traits on the list, you're on the spectrum. The intensity of those traits determines where, from minor difficulties to not being able to function in daily life.

I'm starting to think I might be high functioning too. It makes sense of past experiences and some current traits. It would have been helpful to understand when I was younger as certain aspects of my life would have been easier but now it helps me understand and manage certain behaviours and also gives me an insight into friends with stronger traits so I can be more supportive.

A friend with ADHD jokes that a good test is to drink a can of Monster. If it calms you down, you have it.

[IvanV]

Exactly. (And FWIW what bjn says of himself is the same as me, and the age is close too.)

The question is then, we have these people on social media who are happy to tell you that you can self-diagnose as ND, which leads people to do so. But then some people say that many of these self-identifiers are mistaken. How do we react to that? I don't know.

Meanwhile, there is this ROGD theory that there are people on social media who are happy to tell you that you can self-diagnose as trans, which leads people to do so. But then some people say that many of these self-identifiers are mistaken. Unlike the above, this is something that is designated a theory and a controversial one, because it is hard to be sure that any of this is at all the case. Which leads to the conclusion that it is not necessarily very easy to work out how we should react to this kind of thing.

[Tessa K]

Exactly. (And FWIW what bjn says of himself is the same as me, and the age is close too.)

The question is then, we have these people on social media who are happy to tell you that you can self-diagnose as ND, which leads people to do so. But then some people say that many of these self-identifiers are mistaken. How do we react to that? I don't know.

Meanwhile, there is this ROGD theory that there are people on social media who are happy to tell you that you can self-diagnose as trans, which leads people to do so. But then some people say that many of these self-identifiers are mistaken. Unlike the above, this is something that is designated a theory and a controversial one, because it is hard to be sure that any of this is at all the case. Which leads to the conclusion that it is not necessarily very easy to work out how we should react to this kind of thing.

It's very irresponsible to tell people they can self-diagnose as an end in itself. All responsible tests offered online state that they are not fully diagnostic, just an indicator that someone should seek professional guidance.

It's understandable that some people might self-diagnose with the horrendous NHS waiting times and there are apparently some private providers who will diagnose ADHD from a few online questions and prescribe medication (not helping the current shortage).

If some self-diagnosers had met anyone with severe traits they might think twice about being in a rush to label themselves for who knows what motives.

[IvanV]

It's very irresponsible to tell people they can self-diagnose as an end in itself. All responsible tests offered online state that they are not fully diagnostic, just an indicator that someone should seek professional guidance.

And there are responsible tests offered online, including one designed by Simon Baron-Cohen.

But there are apparently social media sites that are directing people to irresponsible tests, the kind of "personality tests" that are provided as entertainment in lifestyle magazines - or were in the days before social media. Or even, as I heard alleged on a radio programme, asking you just a handful of questions directly and telling you that you are ND.

I'm guessing that bjn and I have done at least one of these tests, and found ourselves sufficiently beyond the boundary mark for "99% likely" that we take it as given. But we aren't asking for anything from anyone. And certainly in my case sufficiently well-functioning in our society and late in my career it no longer really matters for anything to get the certificate.

In my daughter's case, there was value in getting the certificate, and for multiple reasons I believe it to be very true. And earlier in her life we had to fight to get a very obvious dyslexia certificate, which I believe to be very true. Her symptoms of dyslexia are quite classical, although of moderate rather than strong intensity, that I don't really quite understand why her primary school fought so hard to kick it under the carpet. But her ability to achieve at school increased in leaps and bounds once that was recognised, certificate in place, and some really rather small amount of well-directed help was put in place. But, at the same time, we hear there's a lot of people who would like their children to get a dyslexia diagnosis as they get extra time in exams; and maybe because they prefer to believe that their children are dyslexic as opposed to just having lower academic performance than they would like. I'm not quite sure what social-climbing advantages come from a mistaken or fake ND diagnosis.

[bob sterman]

There is a bit of tension here between the current movement to consider various types of neurodiversity as "differences" rather than disabilities and the legislative environment.

E.g. for employers, the legal obligation to make reasonable adjustments relates to something that is "a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities."

https://www.gov.uk/definition-of-disabi ... y-act-2010

Of course some organisations may want to acknowledge and accommodate a much wider range of differences. But in other contexts - people may need to assert, not just that they are "on the spectrum", but that they have have disability, in order to get adjustments.

[kerrya1]

I was officially disgnosed with ASD about 3 years ago now in my mid-40's. I was fortunate that my NHS trust contracts with a local Adult ASD charity to do the assessments under clinical supervision so the waiting list was only about 6 months but I'm confident in the "quality" of the diagnosis. My reasons for seeking a diagnosis were complex but what really pushed me into it at that time was a bad manager who was making my life very difficult around some issues that I find hard to address, but are now confirmed as part of my ASD.

I consider my self to be at the fairly mild end of the spectrum, but I'm still noticeably odd compared to most NT women I know.

The whole "everybody is on the spectrum" thing I find vaguely irritating as I think it diminishes the impact that having even mild ASD, or other ND, can have on your life and how exhausting it is to spend your whole life masking - pretending to be normal takes a huge mental toll on me and the other ND women I know.

Now that I have been diagnosed I feel less pressure to mask and to put myself into situations which I know I will find exhausting and stressful, so that has been the main benefit to me of a later in life diagnosis.

[TopBadger]

My daughter has been diagnosed with ADHD - she's also on the JADES pathway. The diagnosis was actively supported by her primary school to put in place the support she needs.

My son is likely going to get a similar diagnosis (though more mild).

Also - spectrums are old hat - we're "all on the wheel" now, which is a much better way of thinking about it.

https://ablelight.org/blog/why-the-auti ... -spectrum/

[Tessa K]

@IvanV I've done several of the more legit tests. Results vary a bit from test to test but I'm definitely in the borderline/lower spectrum area.

Like a lot of us here I'm good at researching stuff and spotting the bogus information.

From what i've learned from teachers and others, it seems that some parents would rather there was something 'wrong' with their kids than accept that they're not very bright. And yes, they are middle class parents.

@Kerrya1 Not having to mask (as much) is a bonus. I've been spending more time with ND people in the last couple of years and it's much easier not having to hide things like getting over stimmed. But when you've lived with feeling 'different ' well into adult life and masked so long it can be hard to separate what you really feel from the game face you automatically put on.

[Tristan]

My wife is autistic and only realised at the age of 40 (3 years ago). She'd paid thousands for therapy/counselling over the years and was getting regularly burned out at work and couldn't figure out why. She has an autistic nephew and was reading up on autism to help support him when she had the epiphany.

She paid for a private diagnosis (NHS would have taken years) and the realisation has helped her so much. Firstly it explains a lot so she better understands herself. It's allowed her to stop masking when she feels safe to do so and also allows her to advocate for herself better at work. I'd actually say she's become a bit of a role model at work and advocates for inclusive practices wherever she can.

She started a podcast called Autistic At 40 to talk about her experiences through life and has started an online community too. https://open.spotify.com/show/5AWFgZ4yHaobPHf35MtRXr She posts short thoughts and comments here too: https://www.instagram.com/autistic_at_40_podcast/

[IvanV]

There is a bit of tension here between the current movement to consider various types of neurodiversity as "differences" rather than disabilities and the legislative environment.

E.g. for employers, the legal obligation to make reasonable adjustments relates to something that is "a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities."

https://www.gov.uk/definition-of-disabi ... y-act-2010

Of course some organisations may want to acknowledge and accommodate a much wider range of differences. But in other contexts - people may need to assert, not just that they are "on the spectrum", but that they have have disability, in order to get adjustments.

These are excellent points.

The ND who were mostly diagnosed in earlier times were mostly coupled with learning difficulties, and so such people were, by most standards, disabled.

Increasingly we are identifying, in addition, the differently abled. Because the world is designed around the majority normally abled, in terms of what people are expected to do, how they do it, and in what environment, so the differently abled can appear disabled in that context. But when provided with some fairly modest adjustments in terms of these things, they become very useful.

But, as you say, to get people to make reasonable adjustments, often you have to be formally diagnosed with something considered a disability. That is why my daughter's certificates for various things get those rather modest reasonable adjustments, which have made all the difference to her performance.

There is an increasing recognition that diversity in all sorts of contexts is useful, provided steps are taken to take advantage of it. It's not very different, if at all. But first you have stop people labeling the diverse as an out-group to be looked down on, despised, and expected to work in the wrong environment for what they can deliver.

[Tessa K]

@IvanV There's a popular assumption that people with autism can get jobs in STEM easily; of course that's not the case.

The label 'nerd' is slowly being reclaimed but is often pictured as a scruffy bloke in a baggy t shirt who's also into gaming, LARPing and sc-fi/fantasy. Nerds are often still looked down on or mocked - until people need one to fix their devices. A bit like the way rat catchers used to be viewed. The assumption is that autistic people and nerds are the same.

Societal attitudes are changing as more is talked about in the media but that's a double edged sword given the disinformation and people looking to monetise difference with bad advice and diagnoses.

Whatever you think of Big Bang Theory it's interesting that while some of the characters clearly had autistic traits, that word was never used, only nerd

[jimbob]

Coincidentally, this week there were flyers for the first meeting of the neurodivergent group at my office (semiconductor design and production company) - and almost certainly a lots of "neurodiversity" amongst the engineers. And other interesting traits - is it a coincidence that the number of left-handers in some areas is far higher than the underlying population?

[dyqik]

Coincidentally, this week there were flyers for the first meeting of the neurodivergent group at my office (semiconductor design and production company) - and almost certainly a lots of "neurodiversity" amongst the engineers. And other interesting traits - is it a coincidence that the number of left-handers in some areas is far higher than the underlying population?

I'm still not sure that the underlying level of left handedness is well known. And there's a spectrum of that as well - I can do most tasks with either hand, but can only write left handed. But many people aren't as ambidextrous as I am.

ETA:

Across all human cultures, left-handedness is found in 5% to 25.9% of individuals and is more common in men than in women (5, e4, e7). Its prevalence varies from culture to culture and from region to region (e8), for unknown reasons.

https://www.ncbi.nlm.nih.gov/pmc/articl ... e4%2C%20e7).

[dyqik]

And I suspect there's a correlation between being on the autism spectrum and manifestation of intrinsic left handedness.

[Tessa K]

In the past many lefties were forced to write right handed as there were negative associations with the left hand and evil (Latin sinister=left). My mum was a leftie and it was always an issue at school, always mentioned on her school reports.

In pre-literate times people may have tried to hide it.

Consequently historical data on prevalence may be skewed.

I favour my left on the punchbag, my brother batted left handed in cricket, otherwise we're both righties.

[Aoui]

I have ADHD. Ive been diagnosed in two different countries, both times in my 30's. A good 20 years ago since I was first diagnosed. There is a chance I"m autistic too, but you couldn't have both when I was diagnosed. There is no point in doing so now and they probably wouldn't diagnose me because I'd get no extra services. I often say I"m "on the spectrum" because people think of that as including sensory issues. People have really outdated ideas of what ADHD and Autism mean and it's so hard to actually explain. I get no official accommodations at work, but I do try to make clear what I can and can't do. It doesn't always go over well, but I do my best.

I see a few things going on in the discussions here. 1) people saying they are a little ND or on the spectrum and 2) self diagnoses 3) parents. They are related, but not exactly the same.

1) I HATE when people say we are all a little on the spectrum. People want to think we are all the same. We are all of the same worth, but we are not the same. My husband has a congenital hearing loss and the worst frequencies are exactly in the speech range. He masked his whole life. He didn't even want people knowing he was hearing impaired and can fake it like nobodies business that he knew what was going on. All the hearings aides before his current ones helped somewhat, but he still didn't understand a good chunk of what was being said. I had to teach him to advocate for himself. So, after really working with him on it, we went to order some food and he said "I'm hard of hearing, could you speak up please" and the young girl behind the counter (who was babbling with all kinds of loud noises around her and obviously having no issues with that) laughed and said "Oh, I'm a little deaf too" and did nothing to accommodate him. This happened over and over again, even when he pointed to his hearing aides when he asked for accommodation. Instead of actually making an attempt to help, they made an attempt to make him the same as them in their minds and then they didn't have to do much or anything to change their little world view or behavior. Some of it is just not knowing what he needed and some was just wanting to make him the same as them in all ways. And I guess that's what people are doing to us when they say "we are all a little ND". Most everyone has had stopped up ears or many a slight hearing loss, but that's not the same as my husband's hearing impairment. Everyone can forget things, jump at a loud noise, get distracted or hyperfocus or lose track of what they are trying to say, but that doesn't mean they are ND. I've spent a few months in a wheelchair, but it only gives me a vague idea of what it's like to really live with a physical disability (though enough to get an idea of what a pain in the ass it is that people (esp planners and architects) don't take physical disabilities into account enough!)

2) I know quite a few people back home in the states who are blatantly ND who have to make do with self diagnoses. Often because they are ND, they can't afford to get diagnosed. I was diagnosed long enough ago that I learned from books that most of what I always thought was "just Aoui" are actually just typical ND traits. They were things that I always felt set me apart. It was both jarring and exciting. And now you can go online and stumble upon these things instead of having to wait until you finally happen upon a psychiatrist that notices the obvious and finally gives you the correct diagnosis, the wrong meds and you go down and you go do the rest of the research yourself. And all of those of us, who should have been diagnosed at kids and weren't and are fairly messed up because of it...are finding it on their own. This somehow upsets a lot of folk. From what I can tell, many people don't want others to go outside their box. I've also read (and of course, I would have to make a concerted effort to find it..) but I have seen research that showed that autistic people self diagnose more accurately than psychiatrists diagnose them. It makes sense to me really. Cuz the psychiatrists see the masks and not the person behind it. And not all psychiatrists are great at their job, or at least at recognizing autistic people. You still hear stories of people being told "But you have a job and a family" or "But you make eye contact" or "But you have a sense of humor"..so you can't be autistic. So, I'm not sure that psychiatrist are always better at diagnosis than the ND's themselves". And yes, I think people should be able to get a diagnosis and any treatment or accommodations they need, but that's in a world where people give more of a sh.t than ours does. And yes, people might misdiagnose on occasion , but lemme tell ya, I've was misdiagnosed so many times by professionals before I finally got the correct one, that I can't see the argument there.

3) Parents: Omg...parents. Some are nuts, come are amazing, most are flawed because they are all human. Humans run the gamut, so parents do too. Some push for a diagnosis because they know their kid. Some push for a diagnosis because they would rather that than admit the kid isn't brilliant, even if their kid isn't ND. But schools can also be difficult. Some don't see what happens when the kid goes home. It's often written that the kid needs to show the behaviors at home and school. But some kids mask all day at school and lose it when they get home. Some act out at school, but their parents meet their needs at home and so they do okay at home. It's just not a simple "oh, it's just the parents". I can tell you, most people have no clue what ND really means. It used to mean "odd, usually male kid who throws tantrums or runs around like they have a fire under their butts and can't sit still or they hit their head on the walls". We've come along way and that's a good thing. But until people understand more than the tv tropes and until people are willing to admit that people can't and shouldn't all fit in the same box....we are going to be dealing with this "everyone is a little ND" and "people just want a diagnosis so they don't have to behave or do their work right, bah blah blah blah" and we are going to have parents pushing for accommodations for kids who don't need them and others not get accommodations for kids who do need them and some who don't want to recognize there is any need at all and some who don't give a rats about their kid in the first place .

Majorities often think their way is the right way and want every one else to change their behaviors. They see the different ways a brain works and the results they call "behaviors" so they don't have to change theirs. It's all messy, because humans are messy. What I need and what another person needs might be the polar opposite. But what I really don't need, is people telling me "We are all a little ND" so that they don't have to listen.

[Tessa K]

@Aoui

But what I really don't need, is people telling me "We are all a little ND" so that they don't have to listen.

Dead right, it is very dismissive and keeps people in their comfort zone.

From what I'm told by friends it's fine to ask how it affects them and what they need personally because, as you say, everyone is different.

But it's not anyone's job to educate others about ND in general any more than it's women's job to educate men about what we have to put up with (for example). Anyone who cares about someone who is ND or wants to help them at work or in a social group can find plenty of resources online.

[IvanV]

It would interest me to know the distribution of results that would obtain if a large random sample of people took some reputable ND tests.

Maybe, what we get is a bi-modal distribution. A big lump towards low scores, the NT, a thinning out, and then a clump with higher scores, the ND. That would tend to support an observation that, for most people, you either are or you aren't. For the most part, there's a clear separation between two populations. But there might be small number of people in an intermediate situation. So, that would suggest that, you either are or you aren't is almost true, but for some people it isn't. Plainly there isn't clear blue water separating them, there is a counter-example to that who posted in the thread.

Or maybe we wouldn't get that at all, and the claim you either are or you aren't is flawed, and the separation point is arbitrary.

I've no idea, but it would be interesting to know. Is there any research that speaks to this issue?

[Woodchopper]

It would interest me to know the distribution of results that would obtain if a large random sample of people took some reputable ND tests.

Maybe, what we get is a bi-modal distribution. A big lump towards low scores, the NT, a thinning out, and then a clump with higher scores, the ND. That would tend to support an observation that, for most people, you either are or you aren't. For the most part, there's a clear separation between two populations. But there might be small number of people in an intermediate situation. So, that would suggest that, you either are or you aren't is almost true, but for some people it isn't. Plainly there isn't clear blue water separating them, there is a counter-example to that who posted in the thread.

Or maybe we wouldn't get that at all, and the claim you either are or you aren't is flawed, and the separation point is arbitrary.

I've no idea, but it would be interesting to know. Is there any research that speaks to this issue?

I suspect that as you've expressed it the situation is much more complex.

As I understand it the term 'neurodivergent' covers a wide range of people with interesting neurology that has a significant effect upon their lives. Its used to refer to people with ASD or ADHD, but to be meaningful 'neurodivergent' would also need to cover a wide range of conditions, eg: learning difficulties; schizophrenia; bipolar disorder; Alzheimer's; depression; epilepsy; chronic insomnia; frequent migraines; dyslexia; addiction; severe eating disorders; mood disorders such as anxiety; etc etc etc

I don't know of any stats on overall prevalence, but I would be surprised if lifetime prevalence of any kind of neurodiversity was below 50%.

I agree absolutely that for, say, ASD someone either has it or they don't. But I suspect that most people will have something, either now, have done in the past and can now cope, or will have in the future.

[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.

[Woodchopper]

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.