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.

Arguably, online dating is a form of car supermarket for men, a backstreet garage selling used cars that are all lemons, or ringers, or cut-and-shuts, or write-offs, or have been "clocked", or failed their MOT.

Our IVF was at CRGH in London and was one of the few (and possibly the only, at the time) UK clinics offering the genetic test that we needed to be sure of not passing on my inherited risk. The IVF followed extensive genetic counselling for both of us. We were grilled, rightly so, both together and separately. The only thing DH and I disagreed on was whether to permit discarded embryos (eg those testing positive for the gene) to be used for research. DH was relaxed about this as he’s medical, but it made me uncomfortable (despite being pro-choice).

Agree. I have actively chosen to stop at two children because my DH has one disabled child and I darent push my luck by having another. Feels like a lottery.

So why did he ‘acquiesce’ to IVF ? Plenty of opportunity to opt out, given why they were having IVF and the thorough investigation he and OP would have undergone. So many posters not bothering to read the full updates before commenting and blaming OP for pushing.

The child is nine. He lashed out in response to the way his dad was treating him. A dad who hasn’t bothered to find out anything about his son’s disability, and doesn’t engage with medical visits - and prefers to think of it as OP’s parenting causing bad behaviour instead of admitting his sons’ autism. To the point of photoshopping photographs of his son so that none of his peers will know he goes to special school. He’s ashamed of his own son and is leaving the bulk of the ‘pressure’ to OP. So lets’ not kid ourselves that this is the childs’ fault shall we ? So many posters trying to excuse a shit father at the expense of a disabled child.

So why do so many women bear the children of losers, users and abusers??

Guys like this aren’t the only people who demonstrate massively poor judgment when it comes to controlling their reproduction.

Clearly in our society it’s difficult to be honest about not wanting children. I have seen many men halfheartedly “go along to get along.”

Do you not think that OP feels all these things too ? She’s completely engaged with her son and his diagnosis. Until her DH is they’re going to get nowhere and she’d be better off without him.

I’m talking specifically about OP. He was fully engaged with the IVF to rule out the child inheriting a specific gene from OP. They had extensive counselling. He could have opted out at any time. From his behaviour the plain and simple truth is that he only wanted a perfect child.

Fyi I have worked with a man who has used such discarded embryos to create disease specific stem cell lines for 67 inherited diseases. So that potential therapies can be tested in the lab instead of in humans. They are being used around the world.

I am taken aback that someone willing to benefit from embryo-related science would refuse then to contribute to discovery that might improve life for others.

Well, in fairness, so did OP if she was having embryos screened for genetic diseases, and discarding the imperfect ones.

Most people hope to produce a human who won’t have significant disabilities.

I just think that too few actually sit down and discuss how they will cope with various scenarios.

😂

Having dipped my toe into the world of OLD recently, I think this is a good summary.

I am taken aback that someone willing to benefit from embryo-related science would refuse then to contribute to discovery that might improve life for others.

I don’t really have a coherent reason for refusing. I just felt (irrationally I know) that it was even more morally dubious than just creating and discarding embryos to then allow them to be experimented on. As it happened, there were not enough remaining at blastocyst stage to make the tiniest difference to PIGD research.

And I wasn’t trying to create a perfect child. I have a genetic predisposition to certain types of cancer which was diagnosed after I developed the disease in my 20’s. I was cured, but the subsequent genetic testing revealed why so many of my family didn’t make old bones (and lack of extended family was another factor we considered when weighing up whether to have a DC).

What an awful comment. It wasn’t a case of either screening or discarding ‘imperfect’ embryos for shits and giggles as you so cruelly imply. She has a genetic predisposition to certain cancers, from which she has suffered at a young age, and has clearly watched it kill family members before their time. It’s not unreasonable to want to screen this kind of thing out if it’s humanly possible. Maybe read all the updates before posting like this.

I think the whole question of discarded embryos is a difficult one morally though.

Yep, I think that's what I'm getting, reading between the lines. He was OK with having a kid as long as they were 'normal'. It might even be that the genetic screening and counselling actually made him subconsciously discount the notion that a disabled child was a possibility.

Once the reality didn't match his vision, he checked out to a large degree, letting OP bear the brunt of parenting - denying the reality of the child they have to the point of editing his school photos, because he's still clinging to that vision.

And now, when she needs him to step up most, he realises how much work it is and throws a tantrum, instead of thinking, "How can I learn to cope with this better? Jesus Christ, this is what OP deals with all the time, I need to sort my shit out".

OPs partner needs to learn that you can't shout or punish away neurodivergency, no more than shouting at a child in a wheelchair is going to make them fully mobile again.

I’d bet that he’s autistic as well. Undiagnosed parents seem to be the ones who really struggle with their own autistic children.

I can understand he might be a bit shocked initially after being smacked in the face but it is what he plans to do now and in the future. If he chooses to opt out all together he will have financial obligations but in terms of your work load it doesn't sound like he does much anyway. As you have had surgery - I am guessing you have been less able to do as much as usual and he is unwilling to pull his weight and lighten your load.

I have no experience of looking after a child with complex needs but I can say that the things you mentioned in your initial post which triggered him are all perfectly usual for lots of children without additional needs 'accidentally missing the toilet whilst weeing, not eating tea, a broken kitchen item." and whilst your son smacking him in the face isn't good - his response to these things initially probably escalated things.

I never said it was unreasonable. But someone sneered that the husband in this case "only wanted a perfect child." As if anyone else would gladly take whatever they get. But that is obviously not the case here. Everyone has preferences and concerns and there is nothing wrong with wanting "a perfect child" or doing what is necessary to avert known problems. If it's OK for her to have preferences, it's OK for him.

But the differences here are that OP obviously wanted a healthy child and yet despite her child being autistic she is putting in the effort to learn and understand and grow with her child and the OPs partner is blaming the OP instead of reflecting on his own parenting and thinking about what he can do differently.

Then to boot he has the audacity to continue to be pissed off with the OP.

I am the parent of a child with high needs autism and I get the violent outburst daily, I know how gruelling and soul sucking it can be, but I do not have sympathy for a man who can consent to IVF, then have a child and think they are the responsibility of just one parent because they're not the perfect bundle of joy and happiness that they feel on some deep level that they are owed when he should do what the rest of us parents do and find ways to adapt to our children's needs, and especially if you get it wrong or you have a moment where you say something you don't and shouldn't mean, apologise instead of continuing to bare resentment to the other parent who with equal medical information they made rhe informed choice to conceive a child with.

There is a big difference between screening for cancer and screening for autism to be fair.

not the perfect bundle of joy and happiness that they feel on some deep level that they are owed

Men walk away from disabled children because they feel entitled to a "perfect" child. It's the same entitled attitude that underpins incels.

This has just hit me like a sledgehammer. How have I not seen this before?

Don't know if you will get to read this with all the replies. I have an NT son too, also 9. He is ASD1 and him getting diagnosed almost caused my husband and I to divorce, which I suspected it might. He requires alot of parenting. And it is hard. It sounds like your husband needs counselling, perhaps talk to his GP about possible depression etc and then maybe a parenting course like Circle of Security so he can understand that your intensive parenting of your DS is what he needs from you.

Definitely. There's a huge amount of male entitlement in these situations. Women, on the other hand, they just get on with the hard and thankless task of parenting.

With my dh there was something along the lines of ingrained shame in it - who are you to judge my
child, I don’t trust your judgment,
I’ve got better qualifications than you etc. one of my dc is like this too, could argue against every point in their diagnostic report…you’ve got a lack of self acceptance and self awareness about the things they find hard and how they cope/how their parents coped going alongside the way clever people usually control by disputing and planning constantly.

@Vinvertebrate if you're still reading I hope you’re all doing ok.

This feels very familiar. The questioning of something incredibly obvious, confirmed again and again professionally continues in my situation also .

I second hoping you're ok @Vinvertebrate . I am lifted to see mostly positive and supportive posts on this thread and honesty regarding the real struggles.

I hope your husband is giving you less of a hard time and you're having some nice moments on some level together this weekend 🙏