Help/advice needed DS 25 failure to launch

[Formerteenmum]

I would really appreciate some wisdom regarding my DS1, aged 25, nearly 26. I'm so sorry at how long this is, I don't know how to condense.

He lives with me, DH (stepdad), DD 12, DS2 10. He has a degree 2:1 in a non vocational literary subject and has only had 1 temporary job. He scraped through GCSEs and A-Levels and it was only really some phoning around and negotiating by me and interviews with him that got him into 6th form and university. His 1st year at uni he was in halls and he was totally miserable and avoided his flat mates, just hiding away in his room.

Background information to avoid drip feeding:
He is highly likely to be autistic with pathological demand avoidance (PDA). I only started to realise this as DS reached his 20s and my younger DC were ND. DD is autistic, DS2 shows strong signs too. As per my NC, I was only 17 when DS1 was born; this, plus my own probable ND, I'm sure, were factor's in me not seeing it.

Looking back, I think 2 other parents tried to hint to me that he was autistic, 1 friend with an autistic child and the parent of an autistic friend of DS. At the time, I was confused, as I thought both of their DC were completely 'normal' and much nicer than most of his other classmates. DH has been around since he was 7. DS isn't seeing his dad at the moment, but he was around on and off through his childhood.

DS is showing no signs of wanting to start his own life. He is claiming UC and going to the job centre every couple of weeks. Due to the PDA, anything DH and I suggest, work, leisure or education is a definite no, even if it it is something he might have been interested in.

He is currently NC with his dad, his best friend dropped him around the time they went to university. He started to hang out more with another old school friend, who very sadly died in an accident part way through university.

He had a lovely girlfriend for 2 years in 6th form, but he really let her down with social anxiety and selfish behaviour. He can't forgive himself for it and says that he will never have a romantic relationship.

It is hard to get him to even wash and wash his clothes and bedding as regularly as we would like. He is great with his siblings and always on hand for babysitting or collecting in an emergency.

DH and I really need some tips, advice, signposting from anyone with a bit of knowledge with PDA on what we can do to help him start his own life. There is lots more to add, but this is an essay, so I'm happy to answer any questions. Thank you.

Bump.

I don't know if I'll be much help but couldn't read and not respond.

I have ADHD and 2 kids both def ND at various stages of assessment. Also work with loads of autistic children.

Have you looked into or discussed assessment with him? A good psychiatrist will screen for ASD plus anything that has crossover traits so two birds one stone as it sounds like anxiety and possibly depression could be impacting on him too. He may already have some mental health support in place but if not definitely something to consider.

Getting support is hard as an adult and really varies depending on where you live? However it would maybe help him also in making sense of things himself and beginning to develop his own self awareness to support himself.

I know doing these things is difficult when you mention he is likely to shut down anything you suggest and you have identified possible PDA.

How would an average day look for him if you or your DH left him to it completely and didn't make any requests of DS?

I've no experience with PDA I'm afraid but have you have a look at The PDA Society website? www.pdasociety.org.uk there's a section on PDA in adults, might be worth a look?

Hi OP, I’ve no advice but this is quite interesting on PDA and work:

https://www.pdasociety.org.uk/life-with-pda-menu/adult-life-landing/adult-life-by-pdaers-landing/managing-work/

It’s an interesting conundrum because work is a demand, which means your DS wants to avoid it. Perhaps share the article with him as a starting point?

I'm sure you've done lots of googling yourself OP but this is also a good summary:

www.autism.org.uk/advice-and-guidance/topics/behaviour/demand-avoidance

The sections on support strategies and lived experience in particular might interest you.

Thank you @CuteAsDuck. I have tentatively tried to get him a diagnosis as an adult. I made him a GP appointment to discuss getting on a pathway, the GP just gave him some info on support groups. I'm thinking he needs to go back and see if we can ask about the possibilty of a referral to a private pathway.

DS has had treatment for anxiety and depression, mostly health anxiety, which is currently under control. He takes an SSRI and beta blocker regularly.

Thank you for all the comments and links, I find it really hard to discern what is useful information and what is just interesting IYKWIM, so that's really helpful.

I would love to hear from any parents of adult children, similar to DS, who are taking steps towards their own lives. Anything that worked and anything that hindered.

Yes another chat with the GP may be a good next step. A lot of advice talks about gaining understanding of self and I think diagnosis does help with that. Even from my own experience being diagnosed with ADHD in adulthood I feel the same.

Can definitely be tricky sifting through all the information out there. Sticking with the likes of NAS, PDA Society are a good start I would say.

My oldest has what I believe is a PDA profile but he's not at the same life stage as your DS yet. We are still very much at the struggling with school work age.

If you don't get much in terms of other parents responses on here, you could try the PDA society enquiry line - your question is answered by a parent or an adult with PDA.

www.pdasociety.org.uk/contact-us/enquiry-line/

@CuteAsDuck , to answer the average day question...
Gets up relatively early, 6.30/7, his medication makes him wake early, which (I think) is a positive development. Huge bowl of cereal with lots of milk, retreats to bedroom until around 11/11.30 when he might have a shower and them most days walks to the local shop about 12.30 to buy his lunch. Retreats to bedroom again until around 2.30-4 when he will come down to do the dishwasher (his "job"). Asks me what's for dinner, without fail even when I'm evidently stressed with work. Dinner about 6.30/7, followed by another large bowl of cereal, goes back to room. May pop down briefly once or twice during the evening, often decides to start interacting with DD and DS2 at their bedtime.

I WFH, so I'm around to prompt, on days I go into work, he hasn't done the dishwasher when I get home.

I’d contact social services

Rngahing in the community / work is on their remit.

Engagaing!

@ArseInTheCoOpWindow , thanks. I kind if feel he is not 'bad' enough for social services involvement and wonder if it is even possible without a formal diagnosis.

I think the next step is pursuing a private diagnosis, which is a bit tricky as we don't have a huge amount of savings. DH also thinks group therapy, DS, DH and me might be useful.

I'd try giving him a few more jobs to do at home. I hope he pays you keep money towards his food and electricity, and water use. If not start charging him. There is no motivation for him to get a job ATM.

Could you get him to volunteer? That could be a very low pressure, low(er) commitment way to get him out into the world.

I think most kids whether NT or ND surprise themselves by thriving at work and even an afternoon a week could really help him develop a sense of value

Was just thinking about daily routine in terms of is there an interest he has that could develop. I know you'll have thought of that already but might enable him to find a less conventional route into work. Which can be a better fit for lots of ND people.

Just thinking of some strategies I would use in work...

Would he engage in a conversation about his goals if you and DH kept it really expectation free? Even if you were talking about something you wanted to learn/see/do and just see if he offers anything. Might give you a starting point in supporting him with something he feels he has autonomy over.

Using language carefully too - so rather than "You should go to x course" something like "Oh I wonder wether x would be interesting?"

It's a tiny wee change but as you say, any suggestion from you and DH could be interpreted as a demand and then it's off the table so worth trying maybe.

I realise this might be an unpopular opinion but I do think the need to survive is quite an important motivating factor in launching! Does he pay you rent? Personally I would insist that he does, because then he will have to get a job, he will simply have to.

Being isolated and doing nothing is a sure fire way to worsen your mental state. I have suffered from depression and anxiety all my life (I am not saying this is the same as your son’s difficulties but just my experience) and the fact that my parents were very clear I had to make my own way as an adult - that they would be there for me but I had to support myself and there was no other option - and that I then HAD to go out every day to a job or I would not be able to keep a roof over my head - has been very helpful at keeping that at bay. By contrast, a family member who has similar difficulties but is independently wealthy and has no responsibilities and no job has been in a downward spiral for years.

Please don’t think I am unsympathetic to the other issues at play here but other posters have covered that so I’m just adding another angle that I think comes into the mix.

The vast majority of autistic people are not able to be employed. This is not failure to launch.

This is an attempt to rebrand a social failure (employment with reasonable adjustment or support) as an individual failure.

There is an NVR book which tries to help:
https://www.amazon.co.uk/Non-Emerging-Adulthood-Children-Entrenched-Dependence/dp/1108835686?ref=d6k_applink_bb_dls&dplnkId=1ce3f02e-6c31-4da5-8664-01c518da63e4
I like the Haim Omer stuff, he makes sense to me.

I have two children who are autistic. My eldest is 12. She gets so anxious that the medical team gave her a PDA diagnosis. It did not help one bit.

It sounds to me like he has a lot of anxiety which is hardly surprising as it’s probably the biggest transition in his life. The end goal is employment, but I think you need to break down the steps. First he needs to go for a 30min walk daily. Second he needs to have a daily routine. Those two steps are actually really hard to accomplish so the steps after will be easier.

I think a personality quiz which helps you decode your strengths and weaknesses would be helpful for him. A vocational trade is probably a better path than an office job but any career type quiz will give good suggestions.

My autistic eldest has moved out this week at 27. I was starting to fret that it would never happen.
(Actually, he's come back for the weekend and a non-beige meal, but it's a start.)

Sibling nudging had more effect than anything we said, to be honest. Watching as they fledged at relatively normal ages brought it home to him that he'd been left stuck at a different life stage.

Sorry, that's not all that helpful given the ages of your younger two.

I also think he has depression but I wouldn’t medicate yet. The best cure for my children is having a very consistent routine.

My daughter’s anxiety is always a problem but is easier to manage when she has a very consistent routine. When I say consistent, she is on a schedule and that schedule is the same 7 days a week. It’s boring but it’s what she needs.

More helpfully, the steps were:

Antidepressants (years)
A decent counsellor (weekly for 12 weeks then monthly check in)
A job from home which earned peanuts but went on the CV
A volunteering role once a week
A part time job out of the home
A 'fulltime', but miraculously tolerant of bad days, commutable job outside the home
Same job, shared flat much nearer to it.

I'll admit we're nervous about how it'll go.

I'm in the exact same boat ,just a ds a year younger ,3 other sibs all ND all mine have diagnosis and ehcps.
I will be honest ,we went from weekly home visits by camhs,to turning 18 and nothing.dropped like a stone from all and any help.
So the last 5 or so years we have had the ehcp and college ,but they have very little understanding.
He has his own social worker,who I but heads with , because she says he doesn't meet the criteria for supported housing...it's basically put him on the council waiting list ,when he gets a flat ,social services will put a care package in place ..mentally his 13 year old brother is more mature ,so a flat is not possible at the moment..he's also currently on a break from college for trying to start a fight ..
I'm at my Whits end with him ,worried for his future and frustrated that there is nothing in society for him to access ,I thought there would be day centers or , something..but no ,there is nothing but us ,we fall through every gap and crack possible

Could you go to the gym with him or for a walk a couple of times a week.
I'd give him more jobs to do at home and look into volunteer roles.
There is a scheme at the moment for young adults to become involved with environmental projects. It is aimed at people who have fallen through the gaps between education and employment. They teach team leadership skills amongst others. Get in touch with your local mental health charities, they can often signpost you to similar schemes.

I think if you can manage it, just let him live him live at home and be who is, celebrate all the good things (like being good with siblings) and try to manage the bad bits (wash his sheets for him, try somehow to get him to wash). Some kids/people are really just not suited to living independently and cannot really manage it, so if you can keep him at home and just let him be who he is (e.g. he may not be someone who is able to hold down a job etc.) then that is probably the best. You may find if he lives independently you will then have to deal with a lot of problems related to that. I have a relative with similar issues and unfortunately they just do not have the capacity to manage life in many many ways.

Yes, do celebrate the positives. Our DC is also lovely (mostly!) to the younger ones. But you have to look to the future. We won't be there forever, and I am not happy for my younger kids to be default carers. DS knows he has our full backup to help with anything we can while he lives away, but he also agrees that it's essential for him to learn to be as independent as possible.