Autistic adults please can you give me some advise for adult DS with autism

[MargoLivebetter]

(sorry should be advice, not advise in the title - can't seem to change it)

DS was diagnosed with autism when he was 7. He is about to be 26. He is autistic and has lots of specific learning difficulties including profound dyslexia. He is also very clever, with a high IQ.

After struggling to find a graduate job and working in hospitality jobs that he absolutely hated, in February this year he found a job in a technical field that really suits him and is related to his degree. However, he is really, really struggling with the human interaction side of things.

He is super clever and competent and catches on very quickly. He is also a perfectionist, so wants everything to be exactly right. He is also massively anxious and stressy and I would think is far from easy to work with.

Every job he has ever done, he immediately sees everyone else's flaws and inabilities and all the process issues and flaws that he wants to fix. He starts fixing them and taking on huge amounts of extra work and responsibility. He then works himself into the ground, thinks that everyone else is completely incapable and that the whole thing will not function unless he personally is doing everything. He starts to become resentful and grows to hate everyone he works with. This pattern has repeated itself in every single job he has done.

I try to temper his enthusiasm when he first starts a job but it never works. He speaks to me a lot to try and decode conversations and what has happened, but he isn't really listening to anything that I say, he just wants to speak at me, usually ranting massively about how everyone and everything else is rubbish.

He has this fantastic job and a great career opportunity ahead of him and he has done the exact same thing he always does and now "hates" everyone and everything in his workplace. He is in a desperate state about it all, saying that he thinks he will have to leave and I am at my wits end.

How can I help him? What can I say that will make him listen to the obvious solutions? What would help you in this scenario?

My H has autism and the person I speak to at the autism service has suggested doing flow charts to help him think about goals he wants to achieve and what follows on from different actions he takes to achieve the goal.

I have not tried this yet as I rather fear his understanding of what follows from certain actions will be wildly wrong!

You could try it if you think it will help your son though.

I have alao heard of companies that only employ autistic people as the work they do is particularly well suited to how autistic brains can work. I don’t know what these companies are, but you could try to find out.

@Passionfloweronthefence thank you. Sounds like you have found some really good strategies there. I’m not sure why but reading your post brought a tear to my eye as I recognised so much of it.

@MozzarElla84totally get the expert aspect. DS loves an expert and someone he can respect. I know he loves me but I fall into ’Mum’ category and even though I’ve worked for 35 years I’m not an expert and therefore don’t “understand”, even though I absolutely do. I find it mind bendingly frustrating but also recognise where he’s coming from too.

@Sayithowiseeitthe coaching sounds great. I definitely think something like that would help.

thank you all for being kind and constructive. I’m feeling so battered today. He has ranted at me 4 times extensively about all his frustrations and now will not discuss it at all!!!!! Apparently it is pointless because I don’t understand……….. sigh.

There is an organisation called Evenbreak that help with coaching in employment for people with disabilities or additional needs which might be worth looking into?

Thank you. It’s been a hard slog to get to this point.

He is now living independently. Paying his own bills and has his own flat.

It was very much taking the bull by the horns approach. In the last year he has:

gone ice skating - never done this before

gone to the beach - never done this before

done an assault course

gone swimming and brought swimming shorts. He now comes once a week with us to an outdoor pool

gone to the cinema twice

cooked roast dinner on 5 occasions

been on a family day out to Exeter

been to a wedding

moved house

addressed his tics with the GP

he is engaging with the whole project book idea and seeing himself like all of us as a little life long project

has brought himself new clothes - a huge thing for him

Coming up:
he WANTS to try surfing this summer
he is going to join a bird watching group - he doesn’t want to but he is going to - to push himself socially

It’s hard as what we want for him - or think is ‘normal’ isn’t. I have to say he is doing really well.

No autistic person is like another but bluntness works with ours - as well as DH and I tag teaming and his sister (18) is very forceful! 😂😂he doesn’t like buying new clothes and she literally bags up the worn through clothes or the socks with holes and goes right - shopping time -he’s like a rabbit in the headlights but he goes!! We sometimes have to plant a seed and let it wiggle down and germinate.

he’s also looking at animals therapy and learning to ride a horse etc

Where are you based OP as we have a thriving organisation for adult ND people here (SW)?

social skills can be taught it’s hard but he is learning !!

@MargoLivebetter

Your response -

No stop. Just stop. The rule is to respect my boundaries and I have listened. I am now telling you that what you are doing is not fair. I can not process this anymore. I need to have the band width and right now I don’t.

Look at your zones of regulation (red zone?) what can YOU do whilst I have a break?

Talk him through the 5 stages of breathing and 5 things he can see, 4 things he can hear etc and teach him to do these himself!!

I do feel your pain mine once had a 5 hour meltdown at home about stuff at work - I can’t do it. Please self care yourself and say no to him.

Also you can get him to write down the issue in three sentences.

then 2 sentences on how that made him feel

then 1 sentence on something he can do ?? That might help

A friend of mine with ADHD was telling me recently about how she pays for an ADHD coach to support her - basically a bit like a therapist but more work and ADHD specific where they chat things through. She spoke really highly of it. Maybe someone impartial like that might be a good idea if he’d respond to the suggestion??

@Passionfloweronthefence one of the biggest issues is DS point blank refuses to tell work that he is autistic. I have tried every which way I can think of to encourage him to discuss it or at least let HR know but he will not!

thank you for the tips. I’m going to go through all of them tomorrow when I’m less tired and think of what I can deploy.

He then works himself into the ground, thinks that everyone else is completely incapable and that the whole thing will not function unless he personally is doing everything.

Well, in my case, this is true about my workplace... And some people in management even claim to agree...

On a serious note, what do I do when I see something at work that is wrong and annoys because it is Wrong? Firstly, I think,

Q1 "am I paid for this bit?" If yes, then I carry on trying to improve the issue.

If no, Q2, "is someone else paid to do this?"
If yes, Q3, "will they be offended that I have done this for them?"
If yes, "the annoyance caused by the social ramifications of doing this will outweigh the joy from eliminating the Wrongness. Do not proceed".

If no, go to Q4, "if I do/improve this task, will I come to resent the person who is actually paid to do this job because I did their duties for them? Will it eat me up more inside to go unappreciated than it did to see the task being done suboptimally?"

If yes, "the frustration I will feel with my work colleagues afterwards will outweigh the joy from eliminating the Wrongness. Do not proceed".

I still take on things that aren't my responsibility at work sometimes, but I confine it to issues where the feeling of satisfaction I will feel afterwards will outweigh my frustration with anyone else at work.

Otherwise, you're heading into autistic burnout territory and I haven't made enough pensions contributions to risk that!

Such great practical advice! This essentially is a decision making tree that actually helps make the choice!

I am autistic and married a particularly blunt man! I LOVE it because he never leaves me confused and I have learnt so much from him because he is honest with me about social situations and I actually understand it.

My Mum on the other hand spent about 10 years telling me “it would be really nice if I didn’t have to do the dishes tonight” and then being permanently offended that I never once did it. “You are now old enough to take on more chores and it is your turn to do dishes on Mondays, Weds and Fridays” would have achieved what she wanted first time of asking.

Also, sometimes you can make your own autism work for you.

Every time I as much as see management, I have my notepad out, with my list of issues I think they should resolve, and my proposed solutions. They run.

I was about to post the very same. He should be able to get 12 x 2 hour sessions of work place strategy coaching via the DWP Access to Wotk scheme. I would strongly recommend using a company that will do the application for/with him and they will deduct the costs from his funding. This means you arnt too involved with it and it gives him some agency but with direction where he needs it.
I haven't read the whole thread but maybe someone has/will post some links. I’m typing on phone so can’t currently post links but this an area I am involved in for work so do feel free to PM me and I can give you more info/links. FWIW there are some very highly talented and senior autistic individuals who depend on ATW to stay employed. The idea is to reduce the support over time and DWP no longer funds coaching beyond the initial support I mentioned above (this currently seems to be largely case based) but if he finds it valuable and is able to afford it he may want to continue in some way. My son is a bit older and similar story but things have really settled now he has support to deal with these issues. It’s always better coming from one of their peers than mum. Annoying but ultimately a reassuring indicator of independence!

Unfortunately, the awful truth about many workplaces is that people don’t want to change inefficient systems because the systems maybe fulfil something else other than efficiency. I once pointed out that a ‘just the way we do things’ system at work was creating more work and made myself very unpopular (naturally). I hadn’t cottoned on to the emotional or habitual attachment people have to ways of doing something. Autistic minds do details, pattern spotting and being not very good at letting it be if they have unanswered questions or can see inefficiencies. We don’t as a rule dislike our colleagues, but we are there to do a job not socialise. Someone put it to me once as autistic people being colony birds rather than pack animals, in other words we’re fine to meet up for a specific purpose and then depart and we generally don’t much care about hierarchies or our place in them. Whereas, most workplaces run on hierarchies, visible and invisible. People do things in order to jockey for position, not because the thing necessarily needs doing. I’ve felt quite disadvantaged and occasionally used in the average workplace because I’m rubbish at the ‘office politics’. It turns out that all the things that make me bad at the holy grail of team work make me really good at working for myself - and I’d probably advise any autistic person who can’t find the right sort of workplace to consider working for themselves.

@AstonUniversityPotholeDepartment that is an excellent set of questions, thank you. I am going to write them out for him.

I honestly can't thank all of you enough. This has been so helpful. I'm going to keep coming back to it.

He did finally calm down last night and wanted to talk. I didn't hit him with everything from this thread, as it would have been too much, but I did ask him some very pointed questions to force him to be his own "expert". He has some leave coming up in a couple of weeks and we have agreed that he will hold it together for the next two weeks and then we can have a proper think about how he goes forward in a more sustainable way.

This could be a section in his project book. Sharing my diagnosis. He can start small and build up. In our case something at work triggered it and everyone knew he was ND but one member of staff found him awkward and complained and it snow balled from there. He mind find that sort of thing happens in the future.

does he have a formal diagnosis?
There is no legal compulsion to share a diagnosis but www.autism.org.uk/advice-and-guidance/topics/employment/deciding-whether-to-tell-employers-you-are-autisti#Do%20you%20have%20to%20tell%20employers%20you%20are%20autistic?

you could point out the benefits of inclusion, reasonable adjustments etc If they know including workplace mentoring.

I really do understand as ours can be bloody exhausting. We once had 2 hours debrief about the 20 minute drive home and I got fed up of a learnt ‘how was your day’ question (this was learnt) and he never listened to the reply and engaged and then he launched into a 2-3 hour moan about his work. Same every single day. I literally my ears were burning.

I am also ND (have a diagnosis) and I will often say - band width overload. No is as they say on mumsnet - a complete sentence.

I will just say ‘I can’t deal with this I’m overloaded’ - he used to get frustrated when I said this but I just kept repeating it.

AS mentoring is good as is counselling through the NAS.

But it is easy to put the child’s (adult child’s) needs before your own and then your emotional piggy bank is empty and no one is refilling it. So self care for you and time away from them is vital x

Flow chart like this one? I use it when I am on the verge of a panic attack, along with some deep breathing or holding something familiar in my hand. It often helps me stay grounded.

Does he have a mentor/peer support at work that can support him in his decision making? Someone at work who can help him with his mental health, like a mental health first aider, or he could ask to be referred to occ health and they'd point him in the direction of what support he could receive at work when he feels the world is against him?

"He is also going to have to learn to be collaborative as the industry that he has chosen is one that requires people to work together in different disciplines"

Have you told him this? In these words? That might help

Completely understand his reluctance to share his diagnosis in the workplace. There is still much stigma around autism, mostly shaped by misunderstanding and of what it actually entails and then autism also looks different on everyone. If your DS is anything like me he hates to be put in a box, especially a "disability box" when autism is not a disability per se as much as it is a "differentability". That is how I look at it at least .. I'm not a fan of the word neurodivergent, i prefer neurodiverse or, my personal favorite, neurospicy 🌶️
It took me a while to get here, got diagnosed late thirties through the diagnostic process of my own DS. He has his struggles but is generally doing really well and considers his autism a super power on good days 💪. I can learn a lot from that attitude 😉.

This is such an excellent thread with some great advice. I’m a 45 yr old autistic woman and I’ve learned a lot. I’ve made many mistakes in the workplace and definitely hampered my own progression but you can learn, you have to or you burn out!

With my own adult kids i do try, as a previous poster has said, to teach them to learn to “play the game”- it doesn't always make sense but if you follow the rules - and yes you have to work out what they are which is a process- things tend to go better.

These are two interesting accounts that might help him learn some of “the rules”

https://www.instagram.com/autistic_callum_?igsh=NGJxZW4xZ3J5Mzds

www.instagram.com/neurodivergent_lou?igsh=bWl2YnZ0NXB5cHhk

You sure he's not got some kind of undiagnosed 'superiority complex'? He sounds like he thinks he's massively better than every single highly qualified person he's ever worked with. Ffs, he sounds intolerable..

My DH is like this. Two things helped: therapy, and a genius manager who has put him in an office with someone the same. He sees how annoying the other guy's behaviour is and thinks about his own. Plus occasionally the other guy tells him to chill out and get a coffee, at which point DH knows he's got really bad

As a neurodiverse adult your opening post resonated deeply.

What helped me was rules around work ethic.

In my family you had to work. No one was going to subsidize

Therefore, I had to have another job before I could resign from the one I didn't like.

That forces me to get on with colleagues who drive me mad.

Things that help:
Therapy, to get perspective
Visual and clear ways of thinking about how to work.

Flow chart and mind maps to work out what I have to do at work and what's priority.

80/20 principle

I like to work late when everyone else is gone ...so peaceful

@MargoLivebetter how is he getting on and you?

Ours is engaging with counselling and stuff fortunately but he’s still hard work.

OP I'd be really direct with him. State the situation in very cut and dried way. (I'm not autistic but DH is and DS is and I have learned what works and what doesn't.)

I'd say: You are intelligent and you must see a pattern emerging here: Get a job; see flaws, fix them on top of your allotted work, get overstretched; feel resentful.
Practically, this is not a productive or sustainable work ethic, so you need to adjust it. The first thing to do is to accept that everyone, including you, is not perfect at their job. Their imperfection might be to have flaws in their process. Your imperfection is to overwork and get angry with others.

The skills you need to acquire now, in order to thrive in the workplace throughout the course of your life, are to manage your workload so it is not exhausting and to focus on developing your people skills, which is your weaker area, but learnable. It is essential that you accept that these skills are actually just as important as being good at the tech side, since you have to work with both tech and people.

Then help him acquire very simple time-management and people skills. If he sees a flaw, he might learn to say to a co-worker - 'I might have a solution for that - would you like to discuss it?' And practice feeling fine about having offered, whether they say yes or no.
He might practice saying to himself: X isn't lazy, they just leave early as they have a family and that is a lot of extra work and pressure in their life, so I understand that they do their best and contribute as much as they can.
Or, I find Y a bit lazy but I am not their boss, and so, luckily, the responsibility for this is not mine! Pressure off.
Or help him think along the lines: I could solve this tech problem, but it would mean working extra hard and that gets me angry. I choose not to be angry. I will leave on time and go for a run/go home and listen to some music (or whatever he does to relax.)

IME, it took DS a long time to learn social skills and he was very resistant but we kept discussing their value and when he finally made a real effort, it paid off. Life is much easier for him now.

@Passionfloweronthefence thank you for asking. It has got a bit better or more tolerable. He has had some time off, so that has given him a chance to switch off and de-stress. He was about to head off extra early this morning for some insane reason to help someone and I asked him if that person would come in early for him and he said no and then said that he wouldn't go in extra early after all. So, I am doing a lot of question and answer stuff to try and get him to "be his own expert" so to speak.

Thank you @HedgehogOnTheBike and @Stormroses really appreciate the points you have made there. Lots that can be applied to DS's situation.