Parent of an adult with autism

Many thanks!  It probably shows that I am constantly searching for answers in this area.  Plus I must admit to just having watched one of Kieran Rose's videos (as you'll maybe have noticed from my other post today) and no doubt some of this has rubbed off onto me!  I do tend to immerse myself in autistic-led training and other resources and am finding that it helps to restore my faith in humanity, plus more particularly in the autistic community.  And I think his work in particular comes from a place of real compassion, experience and understanding so I'd highly recommend it.  

Jenny - you really are really something else - in the most excellently unimaginable way!

You SO know your stuff lady....and can write it clearly.....you are a champion advocate in my eyes.   I mean REALLY, WOW!!  [Listen to me sounding all BPD ?!?!?] lol.

We are in a similar position to yourselves (see my posts under the parents and carers section) and unfortuately still struggling.  However, in addition to the excellent responses above, I am wondering about the possiblity of drilling down into the reasons why his current job is a better match for him.  Yes, it may all be down to working with or for another neurodivergent person who perhaps tacitly understands or feels like a kindred spirit, but other factors might also be rolled up in there too - as mentioned above, it may be that a job away from direct, immediate contact with customers suits better, or maybe within an outdoors, more natural environment, or maybe that it's more physical so takes his mind away from other issues, albeit only temporarily.  Or it might be linked in some way to his former interests or hobbies, with which I would also recommend some drilling down - what were the precise aspects that appealed, what was going on in his life when they were dropped, were these all genuine interests or did they feel in some way imposed or expected (again remember that possibility of a PDA profile), can the genuine ones be in some way reignited (again remembering that, especially with PDA, you can only foster the conditions and that even a recommendation or attempt to persuade might have the oppostie effect to what's intended).

Its difficult, I know, especially if he doesn't want to talk about it, but my experience has been that the more I push or even just hint or mention things, the more my son retreats or withdraws.  I suspect that's because he needs a high degree of autonomy, particularly as the transistion into adulthood was so problematic and the masking which developed over a very long period has been very damaging and left him feeling unsafe and unable to cope with it all apart from absolute rejection of expectations plus all the "conditions of worth" that were put on to him (by ourselves, nursery staff, teachers and other educators, GPs and other health professionals, particularly those working in mental health services.  The reaction, we now believe, is proportionate to the experience.  And the experience was one of trauma and invalidation.  It might not follow the same pattern with your son, of course, but he maybe needs a very long recovery time and you are providing a safe environment in which this can take place.  

And coming to that safe environment, I would also suggest thinking about your son's sensory profile and, based on your family experience and knowledge (which might not necessarily be in line with professional advice or observations you're received in the past) and anything he's shared with you, again probably harking back to past conversations with your son if he's not able to be more open about it now.

I would also consider the possibility of what may be situational mutism (aka selective mutism, although many members of the autistic community would point out that it's often NOT a conscious or deliberate choice, it's an automatic response and linked to extreme anxiety in many cases), plus the drivers behind that.  In the Aucademy online socials, there's a young man who often only appears behind an avatar and only communicates via the chat to the side of screen.  That feels safer for him, less anxiety provoking and more encouraging.  Again, your son might not have the same profile but it might be worth some consideration.

The other thing - does he have, or has he had, any contact with the autistic community?  It strikes me that he could do with more kindred spirits in his life.  I'm not, of course, suggesting that he shares none of this with the family (indeed autistic people will very often find that there are quite a lot of other autistic or otherwise neurodivergent people in their families), but it may be that he needs to feel more accepted and validated in the world, and some of this might come from contact and connection with others outside the family, even if this can only, especially at first, be in very small and tentative ways.  

Here we are simply trying to maintain a calm, steady environment that conveys the acceptance our son obviously wasn't feeling out there in the world.  Low arousal, low demand, low stress.  I wish there were more out there in terms of specific advice and guidance for parents to adults who, often for quite understandable reasons, have stopped engaging with services themselves.  To be honest we could do with a whole book on the subject as it's conspicuous by its absence.  But in the meantime we're picking through resources from autistic-led sources and hoping to piece things together.  Clearly we'd love to see more and any NAS info on this thorny and pervasive issue would be most welcome.            

I think Autonomistic has raised a very important point for you to consider - by mentioning PDA.  The description of your son's behaviour in the round does seem a very, very good fit.

If at all possible, rather than raising the possibility of PDA with him or other well-meaning helpers, please try to engineer some way to lay it in his path for him to discover and then see if he connects or identifies with it  I know that sounds a bit cryptic, but I believe that an adult PDAer will almost certainly reject, out of hand, any direct suggestion that they suffer (and it is definitely insufferable) from this inexplicable and overwhelmingly frustrating "profile" or "condition.".  Nihilism seems to come as a standard feature and the ability to maintain an outward illusion of NT is common although this  often degrades with age and/or in the presence of stress.

PDA is viewed with extreme skepticism across the board - especially in adults.  The cruel dichotomy is that only a person capable of hiding PDA is likely to truly suffer from it.  Masters of masking, manipulation and a covert but absolute need for control over their worlds.  It is uncomfortably similar to BPD and other problematic Cluster B personalities.

There are no services, community nor acceptance of PDA in adults but I know it to be a desperately lonely and isolating reality.  For your son's sake, I do hope it isn't PDA - but if it is, he will have a better chance of happiness if he knows a/the reason for his internal woes.

Advocates for PDA are a strange bunch and the PDA society can offer little more than pamphlets - all of which are squarely aimed at kids.  Accordingly, I hesitate to proffer any specific links for further information - it will depend on what your son "connects" with....if he suffers with PDA.

In any event, I am pleased that your son has the support and care that you and your spouse are obviously providing for him.

I wish you all, all the best.

Bless you Autonomistic!

Unfortunately this is a really long time for a problem to have continued. It's a shame you couldn't get the right help before it became - Seemingly - unredeemable. I say this because almost everything can be fixed. Some things take a great deal more time than others. And to be honest, I'm just as livid about the current situation with Autism. If I could I'd pop over to every Childs house, give some practical solutions and help, but there is so much misinformation out there and those of us who might have some resources find it can be difficult to help promote them

The problems here have to do with him 1. not being able to filter out unwanted signals / sounds/ noises like most and 2. the Intensity of impact. We can feel incredibly assaulted by sensory-perception signals because we cannot just filter the same. Other autistics can help show how to either communicate to a parent or when older, finally assert agency and learn how that can become responsibility. If I feel assaulted, I can leave, I'm not trapped.

But if a thing isn't handled correctly to begin with, it can take years to undo. Without meaning to, sometimes we can all dismiss and disregard our children. Sometimes is a Complete Misunderstanding. I had one of these with my father, because for years he would say education is a luxury. And I thought he was telling me I wasn't worth that investment. It turned out, when I finally had the vocabulary to recognise and respond to this in my early 40s he was horrified and sad I took it that way. He often makes General statements when I'm trying to have a Personal conversation. 

It's such a small but impactful situation and if there's enough of these we might stop trusting our parents, which feels like a fundamental human violation of a life we're supposed to have and a safety we're supposed to feel.

All unresolved matters can impact other problems. We hear about it when people finally get divorced after years of yelling about the smallest fractures and silliest problems, when in fact, they just felt dismissed and disregarded for 20 some years.

But!! These can be undone. A kid might not mind hearing their parents if they feel safe. So, my guess is there's a lot more here and much of it might be communication errors and just a little wisdom for growth. 

It sounds a very difficult situation.

The toll of masking in school and in the workplace can build up to intolerable levels for an autistic person. It is quite common for us to be able to hold it together in public and then explode into meltdowns once in a 'safe space' at home. I know I have done that a lot over the years. The cumulative toll of years of masking can also lead to a state of autistic burnout, where usual sensory issues with noise can become considerably worse.

When I am in my home environment I need that to be a quiet retreat space, where I can recover from the overwhelming noise of the outside world. I suspect that may be partly why he has reacted so extremely to noise in his home environment. Being able to block out with earplugs and noise cancelling headphones can help. Although he may only be able to tolerate wearing them for a limited time. 

There are some positives to build on. He has managed to hold down a job for a year. That gives some confidence that he is able to achieve some level of financial independence. You state that you are having to finance his life in many areas. If he isn't already contributing towards household expenses from his salary then he really should be. 

If he is able to mask to the extent that he can 'pass for typical' then being successful in a PIP claim is likely to be very difficult. The system is not designed to help those with communication difficulties. The idea of having to go through telephone and possible in person assessments is so daunting that it has been enough to put many autistic people off applying (myself included). However the fact that he has received disability benefits in the past may work in his favour, if he does want to claim in the future. 

He is able to have some limited communication with you by text. Keep doing that. Written or text based communication is much easier to process than verbal communication. He will have an opportunity to think before replying and it is less likely to trigger an angry outburst.

In order to begin to thrive he needs to find an environment where he does not feel pressured to mask. It seems that he may hopefully have found that in his current job. Does he have any hobbies at all that he still engages with outside of work? I don't just mean outside pursuits but things he can engage with on his own at home. It is worrying that he is expressing that there is no point in life. Many autistic people will have highly focussed interests that take up a lot of their time. Can you think of anything that he has shown a genuine interest in himself over the years, that he could be gently encouraged to take up again?

Also does he have a PDA profile from his diagnosis? If not that may be something worth looking into. Any actual or perceived demands may produce an angry response from a person with this profile. https://www.pdasociety.org.uk/wp-content/uploads/2021/04/What-is-PDA-booklet-website-v2.1.pdf 

Thank you, they said that home life was unsustainable because he reacted to every noise and movement that we made. During his teens he started to push over bedroom furniture just at any sound when he woke up in the morning. We would tell him that we knew he found noise difficult and give him strategies but he would yell at us, deny any issue with noise and deny any wreckage in his room saying it wasn’t him. 
I started to have panic attacks during those years as I had to think of every noise and movement I made. We have a big house but he hears the slightest sound. We built him a gym in the garden but he doesn’t use it anymore. His noise issues and movement seem to have settled down but I think that may be why he keeps out of our way now. 

Thank you.

The most important question might be to ask what I expect from my son. Mines 25 now as well. He had a difficult relationship with his father who was NT. He's not autistic but dyslexic and neurodivergent. He can speak both NT/Autistic like all my ADHD friends, but he's a bit slower with communication. We had some difficult years but it seems he started thriving once his father passed away - which I wish wasn't the case.

All kids can feel weighed down by their parents if they're on a different wavelength (think of a radio, AM and FM work entirely different). There's a lot of new studies now around like minded humans having synchronised brain waves when working together! It's fascinating.

In some ways you've been an incredible parent. But it sounds like you're missing some crucial resources to help you with a very fundamental human need: connexion. 

If home life was unsustainable, did they explain in detail why? There can be external environmental issues such as non-human friendly elements creating physiological impact - LEDs, chemically scented cleaning products, constant noise - all these things have been used to torture prisoners and yet, we now find them in the modern home. Even a home without a space to have uninterrupted room to focus and work can be jarring. Yoga technicians will stress the importance of a room with clean walls and no clutter for someone to thrive in. There are also all kinds of resources to hunt down regarding Human Flourishing.

But another unsustainable issue can be a mismatch in Roles and Responsibilities and our Expectations of one another which may or may not be alignment with who they are and what our role is in their life. Often, it's just a bit of wisdom we might lack as parents which turn the entire tide. Such as never being offended. My son will never be my equal, my job is to help him learn to understand his emotions and express them appropriately. It's to contain them for him when he cannot control them as he'll always lack my experience in years. It's to give him guidance and wisdom not expect it from him. The problem here can be what we're learning and how. So much media these days can tell us the opposite of what's healthy and if we become hypnotised by the phantasies we're sold, we can do so much damage. 

Here's what I did: I grew as a human, spent time learning how to be a person worth investing in. Maybe you've done a lot of this, but I have found with spiritual guidance AND psychological insight, add some grounded understanding which has stayed the test of time, listening and approving the other... these can change everything. 

Hi.

I think he is doing great. If he is able to hold on a job he will be self-sufficient on his own one day. Tree surgoen is a nice job away from people, I would like that too. The worst job for autistic is customer service. The constant miscommunication is draining mentaly. Plus when we get emotional for whatever reason it is more difficult to express ourselves, so that might be behind your son's acceptance to communicate via sms. I know I would like that with everyone. At least about important things, because it gives time to formulate thoughts concisely and make them easier to understand.

He might be more depressed now because it's dawning on him that setting targets and expectation for self won't follow the same way as if he was allistic. We have to take what is given, so any job providing means to survive will do, as long as it isn't mentally draining. Unless he will be lucky to find less ableist workplace and get a job where they would make adjustments for him.

It's quite possible he is happy on his own, and you only get to see his angry face, that's there because of interruption. We get aggravated by interrupting when we are focused on something. Texting allows to communicate between bursts of focus.

That might upset you a bit but there are no benefits for adult autistic. Unless we have additional needs he won't get PIP for being just autistic. As much as it pains me I agree with that, we can function and have a full life on our own alone, as long as we can keep the job.