Good manners?

Pink68 said:

I'm trying to find a balance of not pressuring her to tell me what's wrong and keeping the doors of communication open.  Not asking her directly 'What's wrong?' but just letting her know that I'm here to listen if she feels willing or able to talk.

That is exactly what I mean.

You sound like a great Mum, Pink68.

longman said:

That simple huh...... and meantime what happens at school, and what happens in and around the neighbourhood, she will be left to process internally and self destructively.......

Not all internalisation is self destructive.

But that is why a supporting, loving, environment is important.

It's not about letting "the situation just sort itself out in time", but knowing the best way to help and support her to process her emotions, or whatever is on her mind.

Thank you for your help and advice.  I'm trying to find a balance of not pressuring her to tell me what's wrong and keeping the doors of communication open.  Not asking her directly 'What's wrong?' but just letting her know that I'm here to listen if she feels willing or able to talk.

It's a learning curve for both of us.

That simple huh...... and meantime what happens at school, and what happens in and around the neighbourhood, she will be left to process internally and self destructively.......

Its not easy to help her. But let the situation just sort itself out in time sounds to me little better than saying she'll grow out of it.

To drag this, kicking and screaming, back on topic...

@Pink68: I did not mean chastisement by my comments. I apologise if it, as I guess it apparently did, came across that way.

Also, I did not mean to imply that the subject of why she gets upset should not be addressed ever, as Longman appears to have thought I meant.

Rather that, as I understand it, for NTs, and particularly female NTs, it is natural for one to talk about what is bothering one - a problem shared, and all that.

However, it is often the case that we, on the spectrum, are unable to do this. We tend to process emotion differently, internalising, instead of externalising, it.

Simply provide her with a supportive, loving, environment, and don't pressure her into conforming to the NT way of doing things, and you will most likely find she will either find her own answers to whatever troubles her, or she will, in time, find the words she needs to discuss it with you.

which conference are we talking about? The thing that's £40 is not a conference surely?

£400!  If you click the register here link it says it's £40 - or £30 if you pay before 30th September as an "early bird" discount:

http://autismconference.co.uk/register/

Now I'm retired £400 plus travel and accommodation is a lot of dosh. Even during my working life when I could get paid to go on conferences these NAS ones couldn't be justified - because the content was unlikely to benefit me. There were other conferences more likely to help.

I don't understand the approach NAS has. The cost generally limits the cross-section of delegates. And what are they really trying to achieve by these conferences?

They are often basic - introduction to professionals who may not be aware. But the people who could benefit are likely, either themselves or employers, to balk at the price.

And to exhibit at these conferences, well in excess of £1,000, given the sorts of organisations that could exhibit........

NAS must be achieving something through these conferences so that may be why they keep running them, but frankly the point is lost on me. These are profile conferences for executives to be seen at.

longman, you may be interested in this:

http://autismconference.co.uk/

Sorry IntenseWorld, I take your clarifications on board.

But it comes back to a fundamental question - professional understanding of adults.

They haven't even mastered transition yet................ which given the numbers of diagnosed young people going through transition is a shocking state of affairs. I'm sure I'm upsetting professionals with my off-the-wall comments but there can be no defence after two or three decades of autism research, for the parlous state of transition. They surely knew this was coming....

And work is fundamental to transition. I'm astonished how little professional understanding there is about coping in the workplace. There is just some glib notion that if disability discrimination is explained to employers it should somehow work out OK.

There seems to be little comprehension about fitting in at work, especially with work-place social structures. And equality legislation only covers blatent acts of discrimination, not discrete underhand activity that is difficult to prove. If a workplace doesn't want an autistic spectrum youngster landed on them, they'll find a way of wrecking the initiative that doesn't involve conspicuous law breaking.

And no-one seems to understand the impact of sensory issues, which has a huge impact on work environments.

The staffing of places like Job Centre Plus, regarding support for people on the spectrum, should be a national scandal.

So yes, IntenseWorld, it is about environment and the right opportunity.

Right now its about getting Government to make a genuine initiatives to help adults rather than an ineffective gesture.

With hindsight I think confidence is really important. Getting a job, getting some job skills and satisfaction in doing something is essential.

The pain for many parents is seeing a young adult get a break, then having it undermined, and having to start again, and maybe over and over and over again...finding a break, building up confidence and self esteem, and getting over the next crisis that comes along, to get back out there.

Because though such circumstances are hard for everyone, and many people are experiencing that in this current recession, people on the spectrum have real impediments in presenting themselves to get work, coping with the social world involved in work (fitting in) and sustaining enough self confidence and self esteem to keep going.

I think office work is a good place to start. It is an environment of routines in which someone on the spectrum can excel. Its just unfortunate that offices seem to be breeding grounds for bullies - so you need to be watchful that growing confidence isn't being sapped by unsympathetic colleagues.

My apologies again to Pink68 as we've stolen a thread, but it is a useful opportunity.

My first job after school was clerk in an insurance company at 18. I had terrible trouble finding work, making an atrocious fool of myself at interviews, and left school with a few basics (then O'Levels) mostly second or third attempt. So my credibility profile was grim, and my social skills for fitting in seriously defective. It is quite scary thinking back. But filing, and organising documents, doing simple calculations for quotes and such like suited me well. It was just bad luck I was in with two spiteful vicious senior clerks who made sport of tearing me to shreds.

Another job I did was operating theatre orderly, which is again routine, and comfortable, and fellow workers in a hospital proved much easier to get on with, so that job helped my confidence.

Unfortunately I spent more time out of work than in work - and being stuck around at home was confidence destroying.

Little acorns grow into oaks - so office work seems to me a good place to start, if the atmosphere is good and there is a chance to get more confident and self assured. Negativity seems to be a widespread symptom of autistic spectrum. Anything that lifts an individual up must make a difference.

Sounds to me like a good beginning. Good luck to him. He may make rocket science yet, and who says rocket scientists have to start with good A Levels and a First in Quantum Physics from Cambridge.

longman said:

No disrespect to Pink68, as I think we've drifted off the thread somewhat, but in some ways it is relevant as context.

IntenseWorld, you've brought in another compromise - "oh if you achieved it must be down to privilege". So why again is it so incompatible for people on the spectrum to achieve?  This ought to worry parents who are being sold the idea that patient and enduring committment now will avoid all the problems later.

Longman, not sure why, but you have taken what I said (Did you have fortuitous circumstances, such as a very supportive family) as meaning money and class.  Privileged is not what I said or implied at all.  You can be from a poor background and still have a supportive family that want you to achieve (autistic or not).

Regarding PhDs, OK well not having one myself I was unaware that what you describe is an issue with it, but I did say "or whichever qualifications" as I meant that people without qualifications are going to have a tougher time getting a career than those with qualifications, I was not focusing on the PhD per se.

My entire point being, that an inconducive environment (somewhere stressful or overwhelming for an Aspie) is far more likely to prevent them achieving as they will spend their time ...being stressed and overwhelmed, which as we know would mean much less able to function/exist, let-alone gain qualifications.  I have read anecdotally of many Aspies dropping out of courses because they could not cope (I have done this myself).

I do not say that Aspies cannot achieve through will and determination, in fact I did say that I applauded you if this was the case with you.  However, I would imagine, that the percentage of us that have not achieved our potential is far higher than those who have because of being affected by traits and/or environment.  Luck may have something to do with it, and I don't begrudge people a bit of luck.

There will be many Aspies out there that didn't achieve in the academic sense but are endowed with similar research skills and abilities to yourself.  I would bet that they struggled due to traits being affected by environment much of the time.

I have been trying to make you see, that you do not need to 'excuse yourself' as being mild, because you are still an Aspie and you will still have traits that make your life difficult - hence a diagnosis.  Your AS is just as valid as anyone else's on here.  I take issue with the view that professionals have that for some Aspies their condition is no problem to them.   They have no idea at what cost to the individual maintaining that is.

No disrespect to Pink68, as I think we've drifted off the thread somewhat, but in some ways it is relevant as context.

IntenseWorld, you've brought in another compromise - "oh if you achieved it must be down to privilege". So why again is it so incompatible for people on the spectrum to achieve?  This ought to worry parents who are being sold the idea that patient and enduring committment now will avoid all the problems later.  

In a way children diagnosed in the last twenty years, with better understanding and more infrastructure, could be described as privileged. Growing up in a middle class environment in an age before meaningful diagnosis maybe I was privileged. Didn't feel it - autism is disabling whatever your famiy circumstances.

I guess I was in privileged circumstances of some kind, but it served no advantage at school age because I was so severely bullied and damaged by it for decades beyond. So quite what odds privilege makes is beyond my comprehension. I went to University at 21 and things got progressively better.

Will privilege make any odds if you have set backs or a crisis? Doesn't look like it unless parents (if they aren't retired by then) or someone can pay privately.

As to a PhD opening doors - where did you get that idea? Unless you are going into academia or some professions in the sciences where it is essential, a PhD is "a millstone round your neck" because people seem to deduce that you are only interested in one very narrow subject area and you like working on your own rather than in a team.

Unfortunately that's exactly what a PhD is. What getting a PhD did for me is open my mind to my potential capacity to research, synthesise and apply information, which was "mind-blowing" for an aspie. So what I'd say to any parent looking for a way forward, academic training will benefit lifestyle.

Anyone who thinks it will open doors to jobs is under tragic delusion. I know many people who hide their PhDs, and in the early 90s depression, when I was out of work, DHSS told me I had to pretend I hadn't got one, and make up a story for the three years study, because they considered it an insurmountable barrier to getting back into work. Which it is.

I wish we could get out of this crevasse that makes out people on the spectrum cannot achieve. Otherwise what's the point of all the support infrastructure in schools, and parents hoping for a gladdening outcome when in reality most will be sadly disappointed?  If you get somewhere - oh you weren't correctly diagnosed, you were privileged..... Oh me, oh my....

The main problem to breaking this down is the autistic spectrum is very individual. The range and variety of disability is immense, so you cannot say "look at so and so - see what he has achieved" as an encouragement to a young poerson on the spectrum - its just irrelevant.

All the same I do earnestly beg that we look for some way of breaking down this hypothetical barrier about autism and achievement. It can have learning disability implications, but it is primarily about cognitive and sensory difficulty, that can be overcome in the right circumstances.

Did you have fortuitous circumstances, such as a very supportive family etc. on the way to achieving your PhD?  Once you have the PhD (or whichever qualifications) of course the right doors tend to open.  However, mull on this Longman, if you did have fortuitous circumstances then would your life have travelled the same path were they not?  (If you achieved what you did in adverse circumstances then I applaud you for your Aspie determination to succeed.)

You see, if you think about it, as the NICE Guidelines state for assessment of children, (paraphrasing) traits may not become obvious until the capacity to cope is exceeded...in other words the wrong circumstances.  An Aspie (indeed an autie), may get along very well in optimum circumstances.  Once an adverse environment is encountered, you can regress pretty sharpish.  At one point I appeared to be managing (if not excelling) and my capacity to cope is hugely diminished because of being overwhelmed for a long time in difficult circumstances.  Had my circumstances been different I may be in a different place right now.

Thanks IntenseWorld. I just picked up on this when I finished my last delivery - when I started I was just adding on to my previous.

You need to go back about a year to debates about when is someone really on the autistic spectrum.  There's a strongly held view that you are only really affected if you have depression and mental health problems. While that is partly down to professionals only dealing with such individuals, it also creates a fear, I suspect, that if you dilute the definition to include abler people, somehow you'll loose collective credibility. There is a real fear of falling out the diagnosis, not least with the government reassessments for DLA and Income support.

Particularly there's a view that achievers don't really have aspergers or autism. I got quite agitated about this because what I feel we lack are role models. With dyslexia there is so much said about sports personalities, actors, politicians who get on with dyslexia. With the autistic spectrum there's almost a paranoia against the notion that someone genuinely aspergers could achieve. 

I'm a high achiever. It might have been very difficult particularly during school years which were hell, and lasting through 20s and 30s struggling. But I've a PhD, I've had a career both as an industry researcher and a university lecturer, I've published books, and I reckon I've had a good life. I've been exceptionally lucky, and I have to be honest the Aspergers hasn't affected me that much. Yes I'm diagnosed, on NHS too, but I wonder if I would be now with the changes in criteria and funding cuts.

I do however feel that I can put my insight to good purpose, and put something back into the system. I was a disability coordinator as part of my academic role and worked particularly with asperger students. I do campaign and get involved with local groups.

That said, I think it is important to include the distinction my perspective may be milder. Sorry if it sounds self deprecatory (well I am always knocking myself/putting myself down anyway - its ingrained bad habit). However the intention is to state where I stand. I don't want to misinform.

But all the same I'm grateful for you intervention and kind observations. Cheers. 

Mum of 3 raised a vaild point about her son parroting the right phrases.

I've read various texts suggesting people on the spectrum can learn by observation how to come up with the right things on cue.

I don't think the people coming out with this advice fully understand the predicament people on the spectrum are in. It isn't just about using the right phrases at the right time.  Not being able to read situations properly is only one side of the equation, not being able to generate the right non-verbal and inflexion information is very much an equal half.

So the way you say it doesn't necessarily do you any favours.

I'm at the mild abler end (and keep feeling I have to apologise). I have made a practice of observing, and memorising and stage managing/play acting my way through social encounters, trying to be on cue.  I had to because my disposition for many years was a sad or dull expression and a tendancy to elaborate needlessly in response to being asked how I was, and I had to learn by trial and error over many years.  I try to smile as much as possible but I don't think it actually works always when intended.

If I'm struggling goodness knows how people more markedly affected can achieve any beneficial outcome from parroting the right phrases when it looks right.

Smiling all the time isn't necessarily always apt, and looks staged and cac handed. Its better than scowling but it has many limits.

I can use the right phrases and try to remember all the time to follow conversational questions with the expected response. But sometimes it seems to come over as sarcasm - or at least I get accused of not being genuine.

There's a lot of professional advice out there about how you can get round it, but a lack of real, practical, informed experiential advice.

The trouble is stage managing it is slower, there's a longer interval between cue and response, and its hard on top of that to read the situation, and generate the right tone or inflexion, or the appropriate nods and shrugs. That's a recipe for things going wrong.

I wish the professionals would seriously research the day to day problems of resolving social interaction, rather than just offering platitudes, like its easy to learn and deliver the right phrases with practice. No it isn't!

Sorry to veer off topic, Longman: I note that you say in a few places that you are "mild end".  I don't believe there is really such a thing in AS terms.  Maybe not even in autistic terms.  I believe that even if you manage in one area (or more than one) you suffer in other areas.  Even if that is "just" co-morbid anxiety from trying to fit in.  You have said in another thread that you get eczema flare ups (something I get too) which is an indication that you have something severely affecting you.  I hate the term "high-functioning" as well, it's a misnomer.  A person can be verbal and manage self-care for instance, but be hugely affected by their need for routine and have frequent meltdowns.  We all have our individual mix of the traits but I think you are doing yourself a disservice.  If you were "mild" you wouldn't be diagnosed (I presume here that you are) or wouldn't feel the need to immerse yourself in all matters ASC.  High-functioning is not even a diagnostic term.  I think in some ways we have it worse, being verbal, with average to high IQs.  Because we are painfully aware of every tiny detail of our difficulties and stresses, we analyse it all and judge where we fail and on top of that we have an even more invisible disability which puts huge pressures on us on a daily basis.  Give yourself a break, you deserve it.

I wouldn't go so far as to say don't ask her about it, but just be aware of the problem from her end. Not dealing with these things may be just as adverse in the long run.

There may be a way, maybe in time, of getting her to say more. I believe (and I can only offer a personal perspective which as I'm mild end may not be accurate, and my experience otherwise is supporting adults) that it probably would help if she could talk to you about the things going round in her head.

There may be some things you can help resolve, such as misunderstandings. She may however not be comforted by any phrases like "lots of people have that problem" or "we all have days like that" or "you'll get over it" because that isn't reality. Avoid good intentioned platitudes if you can.

It is hard for someone on the spectrum to resolve perceived criticisms or sleights. She may well be going over and over incidents getting an increasingly negative perpective, often things that if they happened to you you might have forgetten minutes or even just several hours later.

Therefore being asked to say what these are only raises the fear of more criticism.

However if opportunities do make themselves available, tactful resolution of some of her worries could ease the anxiety load for her.

Its just how you get to that stage.............

Thanks Scorpion, I consider myself duly chastised

I hope you realise my goal was not to upset her but try get her to understand that I want to help? Feel a bit sh*t about it TBH.

Mum of 3 - Mum was a bit 'put out' by her refusing to say thank you, but she knows my daughter and wouldn't take it heart.  It was me that felt more awkward I expect. Leah understands what is expected now though, so in that department, all good.