Is discussing what it is like to be Autistic with Neurotypical people an exercise in futility?

Hey this is a very interesting topic to discuss and hear people's opinions. Also very relevant I think. 

Personally I am involved in the organisation of a symposium on Neurodiversity (incl. autism) and Employment. We know that there is a real problem with finding employment when declaring a diagnosis, but all the more can it be very difficult to live up to expectations (e.g. socially) that are set for neurotypical individuals. I would be super happy to go into more dept discussing this topic at the next symposium and hear everyone's view on how we can improve this! 

For more information about the event, last event programme and videos are to be viewed here: acechildrensoccupationaltherapy.com/autism-event-at-kcl

Updates about the upcoming event (July 2019, date to be confirmed) is to be found here: neurodiversityworkforce.wordpress.com

I think it would be a waste of time.  You're still trying to basically tell dogs what it's like to live as a cat.  At the end of it, though, they'll still be dogs - and still expect you to go chasing after sticks, etc.

Our behaviour manager at work hosted a workshop for newly-diagnosed Aspies back in the summer.  Even with all of us there, and her assailed by our stories and experiences... she still doesn't get it.  Not really.  I'm sure she thinks I'm over-reacting to the issues at work.  Witness the fact that they've drawn attention to my job role as 'dealing with challenging behaviour'.  To them, it's probably just another aspect of challenging behaviour I should be dealing with.

Could you deliver the training?

The first rule of autism club is don't talk about autism club...

Yep.  Don't ever wind up in a 'care' home.  Basic compliance.

Martian Tom said:

what's the point at all?

Ticking off items on a compliance checklist...

Autism Training - √

It's care sector training, Windscale.  Which means much of it is c r a p.  A great deal of it is online: courses you take during spare moments, and which are tested by answers that you give again and again and again until you get enough right.  Just keep going through the permutations.

My point is... if they give you training specifically focusing on understanding autism, and the people giving the training (such as Behavioural Support Managers) clearly themselves don't understand it properly, then what's the point at all?

Martian Tom said:

an autism care charity with mandatory training for all staff in understanding autism

Yeah, but what's the quality of the training and how well "stuck to" and emphasised is it by management?  Is there periodic refresher training etc. etc?

The piece is here in case anyone hasn't read it and is interested...

Aspie Life!

Well, judging by my experiences in trying to convince the neurotypical staff and management at my workplace - an autism care charity with mandatory training for all staff in understanding autism - it is most definitely a waste of time.

I've spoken at length to them.  I've written pieces to help them get at least some perspective.  I've done all sorts of stuff.  Most of this was done, too, in order to help them to understand why I have behaved in what, to them, is clearly such an extreme manner in reaction to bullying at work.  By going sick!  And by staying sick!  And by showing symptoms of, as my GP observed, PTSD.  Simply through getting shouted at and having a few passive-aggressive remarks made to me.  Gosh, how over-over-over sensitive I am!

Brought into sharper focus today, during the Occupational Health interview they'd set up for me with an independent work relations organisation.

'They don't seem to know what to do for the best,' said the woman, 'and are looking for any suggestions.'

She said she was intrigued that they sent her my job description, drawing attention to the fact that one of my job roles is to 'deal with challenging behaviour.'  She said she could only impute from that that they were saying I ought, then, to also be able to deal with a challenging colleague.

This seems to be the best they can do.

So I say again.  If that's how they are... then what hope have we got of improving understanding in people who have even less of a clue?

In my experience it depends very much on the person concerned.

I wasn't diagnosed until I was 46, two years ago, after around 20 years of friends first suggesting it, and having raised it as a possibility a few times with mental health professionals over around 15 years. In the event it took two visits to my GP to get them to refer me to a service in a neighbouring local authority area to get the process underway, and then around eight months to get the diagnosis.

Perhaps it didn't help that being undiagnosed as a child I had to develop coping strategies that mean in work, educational and some social contexts I can appear relatively 'normal'. If you're interested in finding ways to explain your experience it may be worth looking at some of the resources here on the NAS website and elsewhere to see if they provide simple and clear information that you can use as the basis of your own explanation.

Going back to it depending on the person concerned, my work have been generally very good. That said I have had to do much of the work of explaining what I specifically have difficulties with, and what I find helpful. One of my managers is a great person, but still has some challenges in understanding the need for precision, brevity and clarity in explaining tasks to me.

Although I'm not as smart or confident as I'd like it helps that I am still pretty articulate and determined. Without those skills my situation might be a whole lot worse. What has also helped in work specifically has been support from Remploy. Where that's an option I'd recommend anyone look into it with their manager or employer.

As a bit of self-promotion, in the last year I also started creating a series of short comics dealing with some specific issues. I try to keep the text and the art simple and clear, and on the whole the response has been positive. Often the specific issues are ones that others with ASC, with mental health issues, and who are 'neurotypical' have experienced, even if in less severe forms.

I still have to explain myself, and still face people forgetting that social situations and unclear communication are stressful and difficult for me to deal with. However, writing the comics has helped clarify my thinking and improved my ability to communicate the issues I face. The problem with this is that it places the responsibility on me to do the explaining, which isn't an option for some, and is more difficult the more stressed I am. Anyway, the comics are here - https://tapas.io/series/Stick-Figure-Aspergers and may be of some use. I plan to write around 20 more.

I hope you find that things get easier for you. Following my diagnosis I had quite a crisis in work and had to be very firm and clear with them that things needed to improve or I was gone. Hence the referral to Remploy. I'm still dealing with what the diagnosis means, and how to react to it. But I do feel more relaxed, I've built up some coping strategies, and I'm less interested in trying to present a 'normal' face to the world.

That Tom is an analogy I found to help greatly, I paint a picture for them, describe an individual, each specific may be autistic in its description, once I have given every  specific pointer I ask, does that sound like they are autistic..?

obviously it is they reply,,,, I then say NO the person I just described that couldn’t socially integrate, had no idea of social etiquette, struggled with the tastes of food,  no one understood  why at specific times when certain things Had to happen for that person no one quite knew why, ( repetitive stimming type behaviour)

It was in fact a person from deepest Africa, dropped into the middle of a large city, had never seen many of the things everyone took for granted, needed to pray several times a day at specific set times, had never tasted the food that was around  them, couldn’t understand the language, so basically an alien, no matter how hard they tried they couldn’t fit in, the clothes they had been given were restrictive, itchy, only a light single piece of linen was known to them, buttons, labels, man made fibres, all to much for the senses to deal with, 

That's what I tried to bring out in the piece I wrote for our Behaviour Managers at work - so that they could distribute it to all staff.  I doubt, though, that it'll do much good.  Even some of the better and more understanding staff at work sometimes come out with things that make me think 'Hm... you just don't get it, do you.'

The fictional scenario I presented was of someone getting on the wrong flight and being taken to a foreign country they couldn't escape from.  They couldn't understand the language, the gestures people used, and elements of the culture.  They learned something one day - only to have their learning challenged the next day, etc.  I'm sure most people will look at it as an exaggeration.

I always struggle with finding a way to describe it to NTs in a way they can understand. It's difficult if you're "high functioning" because you can seem so capable at many things, but other things you have zero ability. Like, utterly zero ability.

I may be able to do my finances and raise a family and do consistently well at my job, but ask me to plan something and I can't, it's suddenly like this genius has turned into a two-year-old and is fumbling around trying to do the most basic of things that everyone else can do without even thinking about it. And, I can't learn how to do planning, I just simply don't have that part of the brain. But, when it comes to learning new stuff at work, I pick it up miles before everyone else and become the expert whilst they're still trying to understand the basic concepts.

I think the problem is that everyone views the world through their own filters. You might present the same information to two people but they will filter it based on their own feelings, thoughts, beliefs and experiences, and they'll end up with a different result of the information. Trying to explain not understanding social stuff to someone who has "social" as part of their filter does just seem impossible.

Also, there's kind of two parts to autism in terms of describing it to people: you have the "Social difficulty" aspect of it, which is something all people with autism have in common, but then you also have the "autistic traits", which is a bunch of behaviours we do, but not everyone does them, and we all do them differently. It's like there's a set of 200 traits and any given autistic person might have 12-56 of them. I, for example, don't really have any stims. I do have meltdowns but they may appear different to someone else with autism. I do have a poor reflective smile, but I do not pace. I have hypersensitive hearing, but aren't bothered if my clothes are particularly soft or not.

I would love to have a way of describing autism to an NT, which would work in most cases, and not make it sound like I'm just being lazy with people and can't be bothered to sugar-coat my words or "make an effort" with people.

There was a quote I found once, which is a great description:

"Many of the social problems with autism are because the person is trying to make sense of a society governed by largely implied, infinitely fluctuating rules." (Finding Asperger Syndrome in the Family: A Book of Answers by Clare Lawrence)

I don't have the rulebook, and it's constantly changing, and I don't see what the implications are. I'm blind to them, and it's not something I can learn to do because I don't have that part of the brain that does the processing.

With something like dyslexia, you can describe it in a way that they will understand; you can say the letters seem to move about on the page, and that it's such a struggle that by the time you get to the end of the sentence you've forgotten what the first part was. You can work at it to improve your skill level but you will always have dyslexia. And you can say this even to the people who just see you as "lazy", to show them that this isn't the case and that it is a real thing because they can imagine letters dancing. But when describing autism, I struggle to find how they will understand, especially when I'm very capable in other areas of life.

Morning Everybody,

The responses on here have been so insightful and a fantastic representation of the consensus of the Autistic community. It is extremely comforting and inspirational to know that my paradigm is;  ironically 'the norm'. 

I look forward to further stimulating conversations in the future!

I agree with you, the point I was trying to make was mostly in answer to the original question. Unless the NT was particularly open-minded, in my opinion it really would be a futile exercise because most of the time they would just be looking for yet more ways to confirm their own prejudices.

How many times have you been in a controversial discussion with someone where they attempt to repeat back something you just said, but their version has somehow become horribly distorted by pre-existing prejudices & opinions? This has happened to me a lot & it never ceases to amaze me. I might have a terrible memory for people's names, but I have always had a very accurate literal memory for the exact words used in an argument, especially in meetings at work where I rarely took notes, but could always remember exactly what was said for a long time afterwards.

Quite often people don't listen to your actual words, because they only hear whatever confirms previously held opinions. I honestly think that most people don't even want to understand the viewpoints of others because just it takes too much effort on their part.

Probably the reason why I am uncomfortable with the concept of the original question is that depending on the context it might end up being more of an apology than an explanation, especially in a work environment. A discussion with good friends in a pub though would probably be fine

Pirate Santa said:

The question cuts both ways though, since I have no idea what it is like to be neurotypical. Fundamentally, it is impossible to know what it is like to be someone else & we can only imagine what it is like inside someone else's head based on both their descriptions & observed behaviour.

This is true.  But neurotypicality is regarded as the 'norm' by virtue of the fact that the vast majority of people are neurotypicals.  Which is why we copy them in order to get by out there in the world.  They have each other, too, to back up their sense that they're right and we're not.  We're the odd ones.  We're the single cat in the room full of dogs.  We don't have to understand why they behave the way they do in order to copy them.  They, on the other hand, would never try to copy us.  If they did, they'd make a much bigger hash of it than we make copying them.

I wasn't diagnosed until early last year at age 55, after a lifetime of being labelled as difficult, argumentative, eccentric, weird etc etc. I used to think that I was neurotypical & it's only since my diagnosis that I have been increasingly aware of the differerence.

The question cuts both ways though, since I have no idea what it is like to be neurotypical. Fundamentally, it is impossible to know what it is like to be someone else & we can only imagine what it is like inside someone else's head based on both their descriptions & observed behaviour.

I think the problem that many neurotypicals have with understanding people on the spectrum is that they start from the position that it is a disability rather than just an alternate mode of being. If an NT automatically assumes that people on the spectrum are broken in some way, they are unlikely to properly listen to any description & will only remember the negative things which confirm their pre-existing prejudices.

I am frequently frustrated by the irrational/childish behaviour of some NTs & how they often seem to take far too long to understand things that seem overwhelmingly obvious. They rarely seem to feel the need to explain themselves for being that way though.

My favourite moment was when the Regional Manager gave me my polite reprimand over my meltdown.  He asked how long I'd worked in care.  When I said 13 years, he said 'Ah... well I've been in care twice as long as you and have never been afraid to ask for help.'  I couldn't help it.  I replied 'With respect... I've worked in care half as long as you with an autistic brain, and have never needed to ask for help before.' 

Put that in your pipe and smoke it!

Good for you - so important to speak up and remind people we are a minority!