Autistic DS9 - DH has “had enough”

[Vinvertebrate]

Really need the hive mind on this because I can’t think straight. (For full disclosure, I had major surgery a week ago and I’m still physically/emotionally wobbly).

DS9 was diagnosed autistic at 3, and has many related ND conditions, including ADHD, dyspraxia, sensory processing disorder and PDA. He attended PT nursery from 9 months, and his differences were flagged straight away. Things like not parallel playing, avoiding noise, food/sleep refusal, repetitive movements, lashing out at peers etc. He was thrown out of the local prep after Reception, which he only got through with a reduced timetable and a FT 1:1 from pre-school onwards. He then went to a MS state primary, which also “could not meet need” and is finally in a specialist school, which he (thankfully) loves.

I’m as sure as i can be that DS does not simply need better discipline, and his differences are innate. I’ve been through denial, shame, grief, disappointment and finally resignation. DS is bright, affectionate, chatty, happy, but very challenging and still has meltdowns/violent outbursts.

I have a FT job and some caring responsibilities for a family member. I pick up all the slack with DS’ AN - school, LA/EHCP, pediatrician, OT, Ed Psych, SALT etc.

DH has been hectoring DS tonight over lots of small things - accidentally missing the toilet whilst weeing, not eating tea, a broken kitchen item. DS has been in tears, and I’ve tried to smooth it over, but ultimately DS lost it and socked DH in the face. DS was immediately contrite and tearful. After DS went to sleep, DH sat down on the bed and calmly told me that he couldn’t do this anymore, that he’d never wanted a child (I was definitely more keen than him tbf), and that having DS had ruined his life. I asked him to clarify what he meant and he said “I don’t want this. I don’t want him”. I said that he was making me wonder whether I should get DS away from him for DS’ psychological protection, and he said “I wish you would”. He made it clear that he believes my parenting is to blame for DS’ behaviour.

I’m just sitting here blindsided. I’m NT (afaik) but I was abandoned by my dad at a similar age and I am heartbroken for DS. I know DS is hard work, but if his own dad can’t say anything positive then what hope is there? I’ve always known I’d have to protect DS from the world, but I didn’t expect DH to be amongst the first to take a swipe at him.

I’d be grateful for any advice or anyone willing to share thoughts or similar experiences. and thanks for reading if you’ve got this far.

Op, as the mum of a 33 year old with a dx of Classic Kanners autism plus a list of other co-morbids my advice to you is to let your husband go. You really don’t need him making your life any more difficult than it is now and neither does your son. You can do this.

I have a unsettling amount of friends with autistic children who’s partners (now exes) have refused to accept their child’s diagnosis and refused to help to parent them.

The one thing all these ex partners have in common is an autistic profile themselves.

@Wishyouwerehere50 thank you, that is very interesting. I think a lot of those strategies are ones we used too but we didn’t have a Dx of PDA back then. Choices are always good, deciding which behaviours really need addressing rather than every behaviour and good old redirection! As well as positive reinforcement

Op, sorry, just to add.

Have you heard of the The Challenging Behaviour Foundation.

Also the low arousal technique/approach by Andy McDonnell of Studio3.

I'm so sorry. IME many men decide they 'can't do this' and there is a better life deal for them somewhere else when children turn out to be disabled.

My exH simply denied that the disabled children he fathered with me and later his other wives, where his! It didn't fit his self image, so they couldn't be his.

Many years later I found love for the 1st time. (marriage was arranged)
Ex partner actually had a breakdown and was a missing person at the point our Ds who was 'different' but fine at home, started to show serious differences and difficulties at school. Not sure ex could have picked a worse time.

It was only then that I started to discover that while everyone thought he was a lovely person, a perfect Dad, and no way would he have done this to us, that his family was hiding a whole story about his 'differences.'
Frankly him getting together with me was them safely seeing him offed onto a partner. It was only after he'd been missing over a year, they gave up asking me what I'd done, and their facade about the whole family started to crack. Many 'oddballs' but a close recent relative with a similar profile had broken, and killed his mother, so covering up (ASD) symptoms had become a huge deal.

Ex turned out to be covering ASD himself, but he no idea that was what 'it' was, just that he mustn't be like so and so. He'd been taught to mask who he was, what he really felt and thought, and cover the 'shame' of the reality because everyone was terrified of the (ASD) line down the family.
He 24/7 masked to everyone all the time in order to survive and appear 'normal' until the day he couldn't anymore. His Ds was turning out like him.
When he was finally found, he was unsure who I was, and he'd blanked out even having had a child.

Ds's profile was different to your Ds, but as a child I was told it was utterly unrealistic to expect that he would ever achieve a career and successful independent living.

While I doubt your husband has actually planned it all this way, It's also no surprise this has erupted at a point you are particularly vulnerable and dependent on him.

A) He's ashamed of his son, but it was just doable while he could hide behind the rock- you. But his 'rock' has been shaken, you're sick, you're fallible, you turn out not to always be able to make it all work.
B) he's had to face the situation more and seen how little he knows and placed that on you, (there may be some reality there in terms of you allowing his detachment) and translated it as you 'let' Ds 'become' this.
C) subconsciously (hopefully only!) he knows you're in a weak position to fight back right now.

It is possible it's just an emotional reaction to finding out what life's like when he has to do part of what you do automatically, and discovering that 'disciplining it out of Ds' really doesn't work and has decided that's because he's 'been allowed for so long' and he's just verbalizing his feelings. But the chances are it isn't, and if this is not exactly now, then it will be later. The genie is out of the bottle that he's beyond not happy with the situation, and importantly, feels he has the right and ability to have a better life, free from the one he's made.

On a practical note, be they arseholes or fools, I'm afraid IME the offers they make at the beginning of extracting themselves are the best ones they can imagine that make them feel they are being fair and reasonable in their eyes.
These get lowered, redrawn, and withdrawn as actual separation becomes a reality and they start seeing how much their new shiny life will actually cost to achieve and maintain. I'm telling you this because right now you're in shock and unlikely to be thinking about sealing anything offered. They don't generally up their 'deals.'

Very, very, different situation and different realities for fathers, but I gave D's dad the option to be a walking wallet and financially deal with authorities etc, (his nightmare) or I'd forgo maintenance if he accepted learning from me how to Co-parent his ASD D's from his new separate life and be there as his dad warts and all.

Obviously financially it was disastrous for me, and stripped my career and life, but having an ASD father who'd masked for the world and been brought up in denial only to later suffer serious burnout, in the picture as Ds grew up, helped me help him shape into understanding himself and developing into a man. It also meant when education failed, having done everything else myself, taking on successfully home educating him, was less daunting.

They kind of grew up together tbh, and get on well now, and while I wouldn't recommend the way it was achieved, I don't think I could have created anything better in terms of giving my Ds his best crack at developing well regardless of the ND issues he has had to learn how to manage. Keeping his reticent father in the picture at any cost even though at arms length, was the right thing to have done for him. He was 14 before I started being able to leave them together alone at all. there have been some dangerous moments for all.
It's been very spiky development and we're not quite there yet but I can see the feasibility. If you'd told me we'd be anywhere near where we are when he was 9, I'd have ignored it as impossible.

A hell of a price has been paid, and there will be smarter ways nowadays, but ultimately getting my Ds to (almost) independence and knowing I've done enough that he's fairly equipped to be able to make it out there after I'm gone, is the thing I actually wanted the most once I got past everything else.
But, I only knew that was what mattered most to me, after everything I thought mattered was gone.

I can't tell you what you should do, but I wish you every strength on top of what you clearly already have.

I’m just going by your posts about not driving or walking - have you just had a hysterectomy? Because I had one and remember how vulnerable and knackered I felt afterwards. If my DH had “calmly” disowned our DC while I was laid up in bed recovering from that, I would have thought he was a cunt. Sorry - there’s no other word.

@Wishyouwerehere50 you describe PDA so well. It is counterintuitive at first. DS would be acting out, ignoring my calm and repeated requests/instructions and my instinct used to be to go a little bit sergeant-major on him. I soon found out that I could shout myself hoarse and DS would be impervious and still doing whatever it was I’d told him off about. I, otoh, would feel like shit. Now it’s low-demand or small negotiations all the way…eg you can have plain pasta for tea again as long as you drink a glass of milk, nobody will die if you wear jogging bottoms to school, and yes you can have the iPad / headphones and YouTube, but you must sit quietly while we finish our meal.

I suspect DH is stuck in the sergeant-major phase and struggling to accept that it does not and will never work. I have tried to explain this to DH, but (rigid thinking again) blaming me for the futility of his chosen parenting strategy seems to compute better in DH’s brain.

This.

It doesn't just magically appear from nowhere. If ND people or person has kids, it's more likely that their child will inherit the genes. It baffles me that this comes as a surprise to so many people. We are more aware of ND stuff now, so it often takes a child being diagnosed for a parent to realise they're also ND.

Not a hysterectomy, but it was open abdominal surgery so I’ve got that sensation you also get post C-section when it feels as though your insides are about to fall out. Lovely!

Sorry for tmi.

My son is 10, has autism and is non-verbal with profound learning disabilities. It is a very hard road as a parent. Your husband sounds like he is at breaking point. Unfortunately services for families like ours tend to wait for people to reach breaking point before stepping in, but they do exist.

Do you have a good relationship with anyone at your son's school - teacher/out of school liaison? You are basically facing family breakdown at the moment, and for a child with disabilities and their carer, that is significant. When my son's needs and behaviours became totally overwhelming, we had an 'early help assessment', initiated by the school, which brought about a referral to social services. SS has two branches - one for safeguarding and one for children with disabilities - it is very common for children with more severe disabilities to have a social worker - it is not a negative judgment in any way, but is intended to provide a layer of professional support outside of school. For example, if you had needed hospital treatment after your husband walked out, how would you have managed specialist care for your son? The social worker is intended to be the state's offer of support to prevent crisis because they acknowledge that you are coping with more than most other families.

Our social worker has been an absolute godsend, so please don't worry about getting them involved. You child is considered a 'child in need' on the basis of his disability - and that is OK to admit. Our children need more help - sometimes more than we can offer as individual parents and it is important to acknowledge that and plan for it. One day, we won't be there to support them, so it is good to start building a 'team' as soon as you can. Never once has our social worker judged 'parenting' - but she has put in applications for overnight respite, made referrals for Continuing Healthcare, and is just a brilliant person to turn to when I am struggling - I know if my husband threatened to leave, she would be the person I'd turn to for support - practical and otherwise! She wrote the supporting statement for DLA and all sorts of equipment grants.

The Early Help assessment also identified a specialist after-school club for profoundly disabled children and got us a referral there. It is a huge blessing as it means that I can work full days on two days per week and we have some days of cover in the school holidays. It also gives my son a bit of time with a young, energetic playworker who has WAY more energy for throwing hula-hoops into trees than I do!

I am so sorry that you are facing this and that your husband comes to his senses. However, you need to focus on you and your son now - your husband's choice is his and I wouldn't be looking to persuade him to stay. You'll be surprised at the changes your son can make with your support - you may find that his behaviours reduce when he is no longer living with a parent who is struggling with their own emotions so badly. My son is one of the most sensitive people I know - if one of us is cross or tense at home, he picks it up immediately and it often translates into more confrontational behaviour from him. Just having his wonderful, supportive mummy around may really help your son. And you may find that parenting is a whole lot easier when you aren't navigating the emotions and behaviours of the other adult in the house. Sending you all the strength - you sound like a rockstar of a parent so I have no doubt that, hard as it may be, you will build an AMAZING life for your lovely boy.

I mean. Those conditions are genetic. It wasn’t till my own was diagnosed and I was told that that I looked at myself and I was also diagnosed. I wonder if your NT if his dad is not hence why he’s struggling?.

He wasn't just expressing a perfectly understandable moment of despair though, was he? Something said in the heat of the moment immediately after your child has lashed out at you could probably be forgiven. But OP's DH has never accepted the diagnosis and has taken little interest in any aspect of the child's care or educational needs since he left prep school. He is also ashamed of him as evidenced by the shameful photo-cropping episode. And further, the fact that he spoke so calmly about his desire to leave, rather than emotionally voicing his distress following a specific incident, seems to indicate that leaving is something he has thought about and probably planned for too. It's also despicable that he chose to bring this up with OP when she is trying to recover from her recent surgery. I can't understand why anyone feels a need to defend him - there is no excuse for his utter selfishness.

Men have it easy dometimes

they just walk away….its always been so one sided in that regard

i ended up pregnant at 18 and the man just walked aaay…..one hour said right that’s it see you later.

it’s truly devastating

Do you have any lived experience?
PDA kids are 'not severely autistic'.
They are bright and need autonomy and not standard parenting.
They negotiate and do very well when parents work with their needs,
Parents will mostly sob on your shoulder due to lack of services/ respite, not because they can't take it.
It's currently well over a year's wait to go through EHCP tribunal for example. Ehere I live, it's zero social care support. If you insist on social care support, the only way is via s47 child protection.

I don’t know, your dh could have been intentional and planning to leave so he can live a ‘normal’ life or he could appear calm as he’s very depressed and on auto pilot…I guess @Vinvertebrate knows?

my dp doesn’t really accept he’s autistic or I am, (I haven’t been tested so don’t know but open to the idea) despite two diagnosed dc and many other family diagnosed in this generation. Passing on your genes is also something you could feel was your fault and feel guilt for and want to fight.

its not as though there isn’t plenty of journalism out there making out autism is in our heads etc.

@rhubarb007 the academic potential and capability makes it a nightmare when dealing with education as you probably realise. It's an excuse for services to gaslight and ignore the very real support needs.

In our situation, child is forced into mainstream, they actually don't want to go to a specialist provision but I believe they'd possibly find it better.
The ' behaviour ' is just seen in school as a behaviour problem because of the academic capacity.
The behaviour problems are everything to do with disability, in school especially, but the school system is completely clueless.

Oh poor you, sounds like you are having a hell of a time and just when you need to be focussing on your recovery. As others have already said would it be any tougher for you and your son to be on your own together? You would at least be spared the hoping for input from your husband and then being stressed and disappointed when it is not forthcoming. Personally I would be so hurt by the things he has said about your child who is thankfully very lucky to have you as a mum

OP, I've not had time to read your thread as thoroughly as I would like, sorry.
But from what I've read - you have to resign yourself to the fact you're alone.

My exH - we had to have (icsi) IVF due to male factor infertility. He later accused me of 'using him to have a child'. You both have to commit to fertility treatment, financially, practically and emotionally. Simply untrue and very upsetting.

Re 'not coping' with your joint child's needs. Both my children turned out to be Autistic and have needs which are not supported in School/local community.
It's been hellish tbh. BUT there are my children so you get on with it, even near breaking point. There IS no opt out. My exH didn't feel like that. He 'opted out' when in the home and eventually left. I then Divorced him. After 18 years of asking 'what was wrong with Ds he then obained his own adult ASD dx.
On the back of this, and anxiety and depression caused by raising his SN son, he wangled an early medical retiral. You can't force someone to parent.

As it happens, my younger child (now 17) barely speaks to her Father and my older one is not very keen either. They are Fantastic Humans. It's his loss.

Sending you strength xxx

Why do they find it harder? Can you explain please.

I obviously don’t know you or your DH but it sounds as if he hasn’t accepted that DS is ND to the extent that he is and also, I wonder if perceived peer pressure is playing a part too, as majority of his colleagues have children at the prep school.
It sounds as if he’s disappointed that DS isn’t the ‘perfect son’ he imagined him to be.
He’s bang out of order for blaming you. Absolutely 100% bang out of order.
It’s what you (or DH) decide to do next that you need to focus on. I personally, couldn’t ever feel any love for him after what he’s said to you though

Indeed! Mine is academically very able potentially BUT due to PDA will only do stuff he is interested in.
History, he is probably uni level, geography good.
Loves books, but would you be able to get him to write/record his thoughts somehow? Not a chance.
It's only recently he started to allow ed psych to test him. I had a highly recommended one here about 3 years ago and it took her 4 hours and he did ZERO of the tests. She didn't listen when I said don't bring any papers with her.
School system is a nightmare. Mainstream are too big and not tailored to their interests, specialists don't have perr groups normally. Tutors are hit and miss. We had one who was amazing but she was autistic herself, so instinctively knew what to do.

@Vinvertebrate the more you tell us the more I'm convinced your husband is Autistic. He has probably masked most his life. He is incredibly successful in his work and this situation is difficult to accept or work with particularly if he's prone himself to black and white thinking.

You seem to have a really good grasp on things and know what to do to to get the best for and out of your son. You'll be able to manage this with financial support. With a commitment to say 1 day a week from him. You'll probably find life easier in many ways.

I want to caveat that I understand and relate to the feelings and emotions. I don't however have any time for ongoing cowardly behaviour and dumping on OP like this. The denial is incredibly poisonous. I myself experienced it for a long time. Like so many, it's now apparent to me at least that my ex is Autistic, another successful, high masking guy.

Uh…why do you think we don’t get that?

But it is obviously no excuse. What adult human unloads their stress this way on a vulnerable spouse who has previously done all the work the DH is complaining about? The right thing for him to do in finally noticing how hard parenting is is to go to OP snd apologize profusely for having left her alone with these tasks all these years.

Raising an autistic child can be really hard. Harder than raising typically developing children, and with all the SEN stuff to navigate it can be a downright nightmare…but that doesn’t mean you get to throw the towel in when it gets too tough. When you become a parent that’s for life, not for when it’s nice and straightforward. It’s really, really disgusting behaviour coming from your partner, tapping out when he feels like and leaving you to deal with the aftermath. I’m sure he’d probably feel differently if his child were typically developing, which says it all really. I wouldn’t want him to just be able to walk off into the sunset into his new happy life, make sure he still actively parents his child, given that he is still his responsibility. Once you’re feeling better, leave him and DC and go do something nice for yourself. Don’t do as much for him either.

You aren’t really in an open and acknowledging mood when severely depressed though - we’ve gotten there over the years, it can happen but not in a trough. If you suspect a partner is autistic, expecting them to step up and acknowledge their deficits when they are burned out is…not likely.

i’m not saying @Vinvertebrate should put up with it whatsoever though, no advice! ultimately someone can’t continually let you and your ds down for whatever reason.