UKC

Without any value judgement being placed upon being at certain points along the spectrum.

If one is able to notice traits in other people, how far may that mean that oneself isn't similarly affected, regarding those particular traits?

I've been looking afresh at some family members, while piecing together my life's journey up to this point (how one can be shaped by the family environment and all that), and have arrived at the concept of blind spots in oneself meaning one isn't aware of them (except for feeling to the traits observed).

Input from psychologists and specialist in the field, most particularly welcome. 

Many ta's.

In reply to Timmd:

You did something a while back that made me wonder … 

In reply to Timmd:

I'd say the reverse holds true; it takes one to know one, if you will.

That ain't me I'm afraid.  I've known for a few years that I'm somewhere on the Asperger's spectrum though and with that awareness have recognised the same or similar behaviours in others - family and friends - that means that I'm by no means on my own.  I think, supported only by my own observations mind you, that there's a better than even chance of it running in families though whether as a learned behaviour or an inherited tendency is for others more expert than I to speak about.

T.

In reply to Tony Buckley: That's a good point about learned behaviour, regarding things like eye contact and 'showing others that oneself is engaged and receptive'.

I think it's to do with a growing awareness of how emotional expression and communication and Asperger's traits can intersect, regarding how one feels more naturally inclined to engage with people, compared to the environment created by the traits/learned behaviour which one has been surrounded by. The developing sense of a 'new normal'. More or less.

Maybe some googling could be in order when I have more free time.

In reply to Timmd:

The first thing I would say is to not refer to an autistic person as having Aspergers. Hans Asperger was a nazi doctor who was trying to work out which people should live to benefit the nazis and those who, well, shouldnt. 

To answer your question, in all honesty, you will probably find that autistic people who don't fit into the sterotypical definition of autism (socially awkward, savant, non verbal) will hide their traits behind a neurotypical-acting mask until you get to know them, so it will be quite difficult to tell from an initial meeting. 

In reply to Timmd:

I'm almost certainly somewhere on the spectrum but undiagnosed.  So to be fair is half the IT industry.

I certainly notice such traits in my 12 year old nephew, who is diagnosed, if that's any help.  He's probably a bit more autistic (is that the term you use?) than me, but that said I'm 42 and so have had plenty of time to learn responses to stuff that doesn't come naturally.  The more noticeable thing with him is that his speech isn't quite "normal", whereas by his age mine was.

FWIW my parents have noticed and suspect that if it was a known-about thing when I was a kid I would have been diagnosed too.

We also think my Dad has a few such traits.  Does make you wonder if it's hereditary in some way.

In reply to Timmd:

what you are referring to here is called Masking. It's an essential survival technique for autisic people to do in order to "fit in" to the neurotypical world we live in. 

In reply to higherclimbingwales:

Noted about Hans Asperger's, this is about family members, and an increasing sense of 'Hang on a mo'.

Certainly, it's equally valid/useful/normal/of benefit to humanity/etc, wherever one falls upon the spectrum, and I'd be a funny relative indeed, if it changed my perception of them as people to something more negative. 

Hopefully that's enough disclaimers and qualifier.

In reply to higherclimbingwales:

Funnily enough I've never had that much of an issue with needing to do that (and I'd certainly say I do have to do it, and it can be a fair bit of effort).  There are many situations where it's necessary to adapt behaviour in life anyway, e.g. calling your boss a **** isn't a great idea even if that's your view on him.

But I would say I am very much at the mild end of things, and suspect it's much harder for many others.

In reply to Neil Williams:

absolutely. It's more likely to be autistic women than men who mask because of the societal pressures by their peers which makes it neccessary lest they become an outcast. 

In reply to higherclimbingwales:

Probably true.  I've seen mild autism described as "the extreme end of normal male behaviour", and that is probably true.  But a bloke who's obsessed down to the Nth degree of detail with, say, trains, cars or similar, is probably going to be less of an outcast than a woman (even if in some contexts he does get told to shut up by people not interested in that specific subject).  Which I guess shows one of the many unfair aspects of how society sees gender.

I think it's also more pressure on kids, where that sort of trait tends to result in bullying, whereas an old bloke obsessed with trains who likes spending time alone is just, er, an old bloke obsessed with trains who likes spending time alone.  Probably a bit less so these days than when I was a kid, though.

In reply to Timmd:

(I am not an expert but have read around a bit as I work with colleagues and students who are autistic)

I used to think that everyone was on the autism spectrum in the sense that most people will display some traits of being autistic.  However, being on the spectrum refers specifically to autism spectrum disorder (ASD).  Many people will have some traits associated with ASD.

The NHS website on ASD says autistic people may:

• find it hard to communicate and interact with other people
• find it hard to understand how other people think or feel
• find things like bright lights or loud noises overwhelming, stressful or uncomfortable
• get anxious or upset about unfamiliar situations and social events
• take longer to understand information
• do or think the same things over and over

But just because you have one or more of these traits does not necessarily mean you have ASD.  Diagnosis requires assessment by an autism specialist but there are some online questionnaires to give you an idea if you may have ASD.

So, in response to your points, your family members may or may not have ASD or just have some traits that are associated with autism.  

ASD does have a tendency to run in families though.  

It's worth reading around on the subject.  If you suspect you have ASD it can be worth getting diagnosed.  People I know who have been diagnosed as adults have felt a huge sense of relief that they finally understand themselves.

However, equally we are all different and have different traits, some of which may be similar to traits of ASD.  At work I am probably considered pretty extraverted but outside work I am very introverted and have a number of traits normally associated with ASD.

In reply to tjdodd:

FWIW...

Yep, though as an adult I've learnt those responses and so am far better at it than I was as a kid.

Yep, though also in my case being *excessively* empathetic, i.e. worrying too much what others think/feel and trying to put excessive effort into working it out.

Yep, sometimes.

Yep.

Sometimes, though it depends on context.

As in "tics"?  Not really, but I did as a kid.

Interesting, there's certainly evidence of that in my family.

I think by now I've probably worked it out without any need for a diagnosis, but it would certainly have helped had I had one as a kid, and I think if anyone feels it would help them they should pursue it.

In reply to tjdodd:

A good place to start

https://www.autism.org.uk/advice-and-guidance/what-is-autism

In reply to Neil Williams:

Self diagnosis is a valid diagnosis, especially with something like autism because it's so hard to get an official diagnosis. The neurodivergent community recognises this and fully support those without a diagnosis to say they are autistic if they believe it to be the case. 

In reply to Timmd:

I've self diagnosed myself as being on the spectrum, I certainly show a lot of the traits. As a child I would definitely have been diagnosed as Asperger's by modern standards, but after years of work I can pass as just a bit weird though.

But, I've never been able to recognise autistic traits in others. Everybody else is incomprehensible to me. I don't understand how neurotypical people think, but I don't understand neurodiverse people either. I certainly don't see neurodiverse people as a group distinct from neurotypical people, and I don't feel any affinity with them.

In reply to Timmd:

If you think you want to find out you can approach your GP and see if they will refer you for a diagnosis. However in most parts of the country the resources are stretched, I know that here in Cumbria you might have to wait for 18 months or 2 years but you’ll probably get assessed eventually.

There are also basically no public health resources put into adult autism so a diagnosis would be mostly for learning about yourself rather than access to services although learning about yourself is no bad thing.

I hope this doesn’t sound too personal but you’ve got a very individualistic and distinctive posting style! I just can’t work out if it’s autisticy or not.

I’m no expert but for various reasons I know quite a lot of autistic people and have spent a lot of time reading about autism and talking to people about it.

In reply to MeMeMe:

That's not too personal at all, my posting style isn't too un-alike that of friends of mine on facebook and via whatsapp. 

This was less of an 'am I different' post, and more of an exploration of whether an increasing awareness of the quirks of relatives means anything. A very socially able/enthusiastic has always very warmly thought 'they're/you're a funny lot', about the men in family, and I'm almost thinking 'It's not me, it's them' re certain things from childhood, or I was, until pondered if there might be a correlation between having traits and noticing them, or noticing traits and not having them.

I generally feel like I pick up on 80%-85% of social cues, some people seem to 'effortlessly-vibe' in a way that I envy, but most of the time I feel like I can connect with most people, even if it's taken until my late 30's/early 40's to feel like I have people figured out. Which could either be a natural consequence of knowing myself better, or of a more abstract/autistic approach of analysing people and 'learning their patterns'. Certainly, I can think a lot.

In reply to tjdodd:

I think tjdodd's post above sums things up pretty well (the one from 21.58 on Monday).

The only thing I would add is that for anyone looking for a diagnosis, not only would you need a significant proportion of the traits listed, but those traits must also cause "clinically significant impairment in social, occupational, or other important areas of current functioning".

The significant impairment bit is often missed by people who self diagnose which potiently leads to Level 1 Autism / Asperger's Syndrome being seen as just a club for people who are a bit quirky or a bit different. In reality even people on Level 1 are people "Requiring support”. Not that there is any actual support available of course.

Having said that, if anyone genuinely believes they are on the autism spectrum and thinks that a diagnosis may help them to understand themselves better and perhaps come up with some strategies that make their symptoms a little less disabling, then I would say it is probably worth persuing a diagnosis.

I have certainly found getting a diagnosis to be helpful as it has enabled me to reframe so many of my difficulties in life in a more positive way as well as helping myself find a way forward out of what was probably a massive 'autistic burnout'. This isn't a phrase that appears in the diagnostic literature but it's one you'll come across a lot if you read many of the books, blogs and articles written by actual autistic people.

I spent many years trying to mask what I now know to be autism and trying to be 'normal'. It was utterly exhausting wearing that mask all the time. Now at least I'm more comfortable just being autistic in everyday life and I no longer feel the need to spend all my resources on trying to fit in. I'd still really like some support with everyday living though and, even at Level 1, my symptoms are still disabling enough that I would jump at the chance of a cure if there was one.

So, by all means self diagnose and / or seek an official diagnosis. But do so because it is something you actually need, not because it's a trendy label.

With regard to noticing traits in other people, I spend a lot of time people watching and notice autism-like traits in other people all the time. The vast majority of those people almost certainly aren't autistic.

(Bits in bold italics are from the diagnostic criteria).

In reply to Timmd:

I am drinking my coffee from a mug gifted to me before the revelations about Asperger. It reads:

"for success in science and art, a hit of autism is essential." 

I work in a very left brain dominant, technical field, stereotypical behaviours are the norm. Being of that personality type myself, I have some views.

Being intelligent carries its costs mentally.

Geek, nerd, on the spectrum insults or compliments?

Being of a personality type is not necessarily a syndrome. I suspect the label is misused by media types and the more right brained to try to explain what they don't understand. I am very aware that I answered an over generalisation with an over generalisation there.

In reply to storm-petrel:

Well said....agree totally with you...especially the part highlighting significant impairment and functioning.

I occasionally work in an ASD diagnosis service .....with children not adults. Even after plenty of screening before we agree to assess our positive diagnosis rate is around 35%.....

There are many people who have what are now classed as 'traits' but it's usually a long way from a diagnosis. 

In reply to Timmd:

There are some particular vocal patterns & inflections that can present in people with Aspergers. 

But the whole representation as a spectrum and the associated  language isn't always helpful - this article frames it well:

https://neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/?fbclid=...

In reply to Neil Williams:

When we work together as a team, we all seem quite normal, as geeks. Its only when we encounter sales people, some managers and misc. others, that it becomes obvious how far left we are.

The 'Rah !Rah! Rah! Look at me!' cult of self promotion, needed to get by in the modern corporate world, escapes us. The politics of smiling whilst backstabbing, is alien. There are a few geeks who've become excellent mangers. Though, they tend to reach a certain seniority and then fail to progress. Corporations want passion, subject matter expertise and diversity of thought. Then they set about doing what they can to ignore it.

In reply to higherclimbingwales:

I note you got modded down there. I understand what you're saying.

I've read about some girls being classed as tomboys. The world of female interactions is complex. There is pressure to be popular, but the rules are often unclear and shifting.  Us boys, on the other hand, are simple things. This car is faster than that one. Hulk could beat Spiderman. X is bigger/ faster /stronger than Y. The rules are simple and easy to understand.

In reply to dread-i:

Yeah, I don't understand how people can disagree with the statistics on this. I also got 👎 for saying that Asperger was a nazi and we shouldn't refer to autistics with that term. Go figure 🤷🏼‍♂️

In reply to Timmd:

In my previous teaching roles I had to learn how to support students who were neurodiverse. In the sciences it's not that uncommon. The best info came from the maths dept. As they pointed out, being 'somewhere on the spectrum'  is quite common, but they do quite well as 30% of the staff are as well. For them it really was business as usual.

In reply to higherclimbingwales:

The term has never overly bothered me, personally.  I've never got hung up on terminology, what I care about is whether people *intend* an insult.  Probably best that we move away from its use, though, not least because autism is more of a varied continuum than two distinct conditions.

In reply to Neil Williams:

But  the other half of the IT industry is diagnosed

My brother is quite obviously on the spectrum but undiagnosed and I wonder what benefit would come from getting someone like him labelled anyway, if the person is high functioning and able to lead a "normal" (whatever that means) life.

Arguing from pragmatism...  as an open question, what's the benefit of people getting diagnosed while they are at the milder end of the spectrum?

In reply to CantClimbTom:

I think it simply comes down to "if you feel a diagnosis will help you, then it is the right thing to do to pursue one, but if you don't then it's a likely-stressful waste of effort and of NHS money".

Nobody should be pressured to seek a diagnosis nor should they be pressured not to do so.  It's about what that individual sees as right for themselves.

Along other lines I'm also gluten-intolerant and quite possibly coeliac.  Pursuing a diagnosis of that involves a month of eating two slices of bread a day minimum so as to destroy my intestinal villi sufficiently that it'd be seen on a gastroscopy.  No, thanks.  I remember what I felt like when I did, and it wasn't nice.  But again, some people will feel that month of misery worth it, and they should not be pressured not to do it if it's right for them.

In reply to Neil Williams:

It is no longer a diagnostic category anyway. Those who have a historic diagnosis of Asperger’s retain that label, but any diagnoses given now are simply for Autistic Spectrum Condition.

In reply to CantClimbTom:

Sometimes it's helpful to inform other people who you work or hang out with, as it's easier to get into a conversation about avoiding certain situations or communicating better? I worked with someone who told me they were autistic and preferred to communicate by email. Fine for me, I would normally call first by default but with them I knew they just wanted an email.

In reply to Stuart Williams:

Indeed.  I actually saw an interview with the guy who was key in publishing DSM and he was directly asked did he have any regrets about the publication and he came right out with "Asperger's". 

Reckoned it never should have been a classification on it own and by allowing it in there like that, it's lead to possibly millions of people around the world being told they have a condition, that they don't think like other people do etc... Which then leads to role adoption.  Millions of people's lives have been negatively affected by this label.

Asperger's has rightly been folded into ASD.  And, like many disorders of the mind, that's a spectrum we're all on.  We all exhibit traits, behaviours and habits that are part of an autism diagnosis from time to time, but we're not labelled as suffering from a condition as it doesn't blight our lives or make thing difficult to deal with.

In short, what many people would have called Asperger's in the past may now be viewed as personality traits.  Are those personality traits fed into by the individuals position on the spectrum? Possibly.  Is there any need to take action? No... We're allowed to have different personalities.

Basically it's not a problem unless it's a problem.  By all means speak to a psychologist if you feel a diagnosis would benefit you, but you don't need to if you're happy and have a good life which you're content with. 

Edit:  For context I'm a Psychology grad with spectrum disorder in family members, so have a wee bit of experience in the area and am not detracting from the importance of ASD diagnosis.

In reply to Timmd:

This isn't directed at anyone in particular but it's the best explanation I've seen of what it means to be "On the spectrum", a phrase that seems to be commonly misunderstood  - https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-expl...

(This is a bit long so feel free to ignore - I've shortened it as much as I can).

If anyone is thinking that they might benefit from getting a formal diagnosis, here is a very rough guide to how it works. At least this is how it worked for me about five years ago when my local area first set up their adult autism services.

Before getting to the stage of talking to my GP I had spent probably twenty years denying that I might be autistic because frankly I believed all the negative stereotypes about autism and I wanted nothing to do with it. During that twenty years I had been diagnosed several times with depression and unspecified mood disorders. I was prescribed several different types of anti depressant which had no effect and spent thousands of pounds of my own money talking to therapists who didn't seem to understand how my brain worked.

Talking to my GP about possibly being autistic was a last resort. Luckily for me, I had a new GP who was very interested in actually listening to what his patients had to say.

He gave me the short version of the Autism Spectrum Quotient test to fill in (the full version is easily found online) and then asked me a few questions about why I though I might be autistic. On the basis of that he agreed to refer me to the newly set up service.

After a lengthy wait I recieved a large pack of paperwork which included the full version of the above test and a couple of comprehensive questionaires to fill in and return. I then recieved a letter offering me an appointment for an assessment.

My assessment was carried out by two clinical psychologists who had specialist knowledge of autism. My ex partner went with me to the assessment. Ideally anyone who accompanies you should have a good idea of what you were like as a child but as with many older people there was no one left alive who could help with that.

The assessment lasted four hours. My ex partner was present for most of it but for one hour we were interviewed seperately. There were no formal tests as there weren't any suitable for adults but the interviews followed a standard structure. It was pretty exhausting really.

I then had to wait a few weeks whilst my case was discussed by the rest of the multi-disipliniary team. I guess at this stage you could find yourself being referred back to mental health services. I was invited to a follow up appointment where I was given the diagnosis along with a comprehensive report stating why the psychologists thought a diagnosis of autism spectrum disorder was appropriate for me.

We had a lengthy discussion about my job and whether I might want to ask for any reasonable adjustments at work. I was then invited to a third and final appointment where I was given a report that I could give to my employer if I wanted to. Since there were no further services available that was the end of my diagnostic journey.

I presume all NHS adult autism services are broadly similar although there seem to be some regional variations. I felt the whole process was very thorough and very professionally handled. Later, in online discussions, I was somewhat shocked to learn that people are sometimes diagnosed at the end of a one hour session with a psychiatrist. I find it hard to believe that something as complex as autism could be diagnosed so quickly and casually.

So that's it really, a journey from being ashamed about the possibility of being autistic to some sort of acceptance, though I think that will always be a work in progress. If you genuinely think it will help you, then go for it. Just bear in mind what I said in my earlier post. To be considered autistic under the current diagnostic criteria your symptoms must cause "clinically significant impairment". Mine certainly do. They aren't just personality quirks. At times they are very disabling. I'm in the lowest severity category, level one. But that still means I require support according to the diagnostic criteria even though there is none available. 

I hope this doesn't come across as a "woe is me, please feel sorry for me" post. That's not what I want. If it encourages someone to get help to try and better understand themselves I shall be pleased. If people still think that autism is little more than a personality quirk then I shall be somewhat disappointed.

Everyone is not on the autism spectrum. Many people have some autism-like traits but that is not autism. Sometimes being autistic is utterly utterly utterly shit, and then some. Occasionally it's great. But it's not a club for quirky people. I'm sorry to repeat this yet again, but it's a disability for people who are significantly impaired by their symptoms. If you are one of those people then I genuinely hope you can at least be a little kinder to yourself by finding some sort of self acceptance.

Thanks for reading if you have managed to get this far.

I should perhaps just apologise to Timmd here. None of what I have said is intended to be any sort of criticism of his original post. It's just that the conversation very quickly progressed beyond what he had asked.

In reply to storm-petrel:

The rest of the Multi-Disciplinary Team are often also shocked (and exasperated) to discover that the team psychiatrist has done something like this, and share your concerns. Too many psychiatrists are a law unto themselves and far too quick to hand out complex and potentially life changing (not always for the better) diagnoses. 

In reply to storm-petrel:

Thanks for your open and honest posts on the thread.  You have definitely improved my understanding and interesting to hear the diagnosis process from your perspective.

In reply to storm-petrel:

Thankyou for your interesting and informative post about the process of assessment.

The phrase "clinically significant impairment" is always difficult for me to understand. What does it actually mean? For example:

1. A problem that can only be assessed as significant by a medical professional.
2. A problem that means I need to seek medical attention.
3. A problem that is really difficult for me to deal with without help from others.
4. Some other meaning.

My research hasn't helped me with this, and as I don't feel the need to get a diagnosis, how should I deal with my situation, except to say that I am 'a bit on the spectrum'?

I'm currently on holiday with a bunch of IT types; we all manage each others' sometimes significant issues, and are having a great time. At this point, I don't believe anyone would be helped by a medical diagnostic process, as far as I am aware.

I don't need to be 'on the spectrum'. However it's a phrase that conveys some kind of meaning that is commonly understood and attempts to make light of our social failures, and even to forgive them. For lack of something more appropriate, it is an expression that I am likely to continue to use. I don't mean to cause offense thereby, but that is the nature of social dialogue.

In reply to freeflyer:

Basically that someone isn’t coping/functioning without intervention from healthcare services.

Now obviously that is still a bit vague and subjective, and it is ultimately a bit of a judgement call. But it’s not really possible to lay down exact and universal criteria of what it means to be coping okay. However, it would usually mean that someone was coming to the attention of services whether they like it or not. At the higher functioning end of things, storm-petrel’s experience of years of seeking help for moderate/severe mood or anxiety problems isn’t unusual. At the less high functioning end it might mean someone who is unable to work, house or care for themselves. 

In reply to Stuart Williams:

my uncle was autistic, but born in 1948 he was mainly just labelled as dum, odd, thick, retard etc for at least the first 30 years of his life, he never left home, never drove, managed to do a basic local warehouse job but was continually taken advantage of there, he died relatively young from lung cancer caused from being asked to pull out old asbestos at work. When his mother died he really struggled on his own, but resisted help, it was tough. I can only hope things have improved now.

Genetics: who knows, our daughter displays traits, however comparing to my uncle I'd never suggest she was on the spectrum. Although I'm of the thinking no one is normal, everyone is different and we all sit on a big long scale somewhere. It's just that some traits of where you may sit on that scale make it hard to live in the way our society and workplaces have been designed, or meet societies expectations.

The brain is complex, but just as genetically everyone appears different physically there's no reason to not think all our brains differ ever so slightly. 

In reply to freeflyer:

None taken. Not by me anyway.

In reply to ExiledScot:

It's not single dimensional (which I'm sure you realise), better to think of it as one of those wheels which have all the various neuro traits (not sure that's the best word) around the outside, and for each of those traits we're somewhere between the centre and the circumference. Join the "dots" and you get an irregular polygon, with everyone's polygon being unique.

Some "typical" shapes would be classified as autistic, others would be classified as ADHD, etc.