To think this is largely true in my experience, mothers experience of raising a ND child

That’s so sad.
My dh opted out of any of the hard stuff. We split up a few years ago - it was easier to handle it myself than to have expectations on my dc’s other parent.

This, it's money you need for the child. Equipment, therapy, extra support not an 'income' for parents. No wonder some posters think parents of disabled children are better off with all this 'free money' if even those in receipt pedal this myth.

DLA is not extra income for the general pot. It’s money for the disabled child. Honestly the number of people who just think it’s extra money for the hell of it is embarrassing!

My child is on middle rate, it all goes on therapies which he has to attempt to level the playing field.

Carers is a pittance that traps you in low wage low hour work. There’s no phasing, so even an extra £10 a month means you lose over £300, and to make that amount up in a month would mean working over 20 hours more (assuming MW) which can be nigh on impossible with a disabled child.

Have only made it through the first page, but YANBU at all. When our ASD DS was diagnosed, the NHS paediatrician's second sentence, after the diagnosis, was: "Try to stay married."

I was a bit shocked, but she was a very nice woman and went on to tell me that the vast majority of parents she sees end up divorced after a diagnosis like this: as far as she could see, the fathers simply don't stick around. She also told me that according to NHS statistics she'd seen, something like 80% of mothers of ASD children end up with clinical-level depression at some point.

My DH stuck around, but has had little to do with actual issues, and TBH I'm seriously thinking of dumping him, except that I can see it could be even harder for me without him, because though he does little with DC, at least he's earning money for us and dealing with (non-child-related) bureaucracy like car MOTs and stuff. I despise myself for this cowardice but I am truly on the edge of my last nerve without the hassle of launching a divorce too.

"But no one gives a shit, it is what it is and in my experience there is no support. People love to tell me that I need a break, they don't know how I do it etc. No fucking choice love.*
They sure do love to say have a break, don't always put yourself last, like there's actually some choice or some energy left over from everything that has to be done.

I have 3 Autistic kids. Like many of my friends my experience is that their Dad never fully got on board, didn't want them diagnosed, doesn't accept their disability, expects them to just behave in public. There's absolutely no way to make him be involved, he's abusive and bad for the kids. I have 6 friends with Autistic children, 4 plus me are divorced/seperated, 2 are still together and 1 of those marriages is really struggling. Its the same thing, the men won't accept their children's needs, let alone meet them. The choice for the Mum's is do it themselves or let the kids fall through the cracks. At one stage my DC had collectively 8 hour long therapy appointments a week, regularly miss school, regularly need picking up early. Ive dealt with a child that became suicidal because of her disability and her father's behaviour and XH wasn't even interested in the fact she was suicidal. There is rarely choice involved in the fact that the majority of the time its women that step up.

I'd just assume your SEN child had different needs than mine that allowed you to continue working, or you were able to get them taken care of a different way. No big deal.

I think someone upthread mentioned guilt- and other parents guilting you, and that's definitely something I've experienced as a working mother of a SEN child. It's reminded me of the 'Oh, you're going back to work already? Full time?' I got a lot of when on maternity leave. Someone did it a couple of weeks ago, like I wasn't doing SEN properly because they'd given up work and I hadn't. I know they absolutely wouldn't have said that to DP. Feminist issue.

What they didn't know, though, is DP works PT and has just done a 2 year stint as a SAHD so I could lean into a career opportunity while he did all the day to day heavy lifting (I still get paperwork but tbh that probably plays to our strengths). It's the assumption it should be me that pisses me off.

We're really lucky we've both been able to work so far, I acknowledge.

It's not that simple. Lots of parents can't just go part time or find wrap around care. What manager is going to allow their staff to leave at a moments notice multiple times a week because their child is having a meltdown.
Absolutely nothing is simple. My DS had to have a general anaesthetic yesterday to have stitches in his head and is still in hospital being sick from the anaesthetic.
If he didn't have additional needs he could have had a local anaesthetic and been home in a few hours.
It is lonely. And parents who don't have these issues think it's easy to find a solution. It's not.
I'm giving up work soon. No other choice and not sure if I'll be able to ever go back because DS will never be able to live independently.

Yes I am sure you are right. It’s hard work, and can be much more thankless than raising a child who is NT.

So naturally men - or many men - try to bow out of that, because if there’s one thing we know, men will try their best to get out of hard, thankless and trapping work.

That does make sense. For someone who has a career they love which is hard to get back into it has to be very depressing. I can't really see any way someone could give a child with significant additional needs the attention they need (not even the ideal amount but just the bare minimum they need) whilst working a lot of hours.

Though I'm not sure what the solution there is really, I think financially it is covered with DLA as much as it can be. But the problem isn't really financial, it's more so the lack of freedom, and the problem there is that alternate care often just doesn't work with ASD or significant LD, especially if they are in school and struggling whilst there they need their primary care giver a lot more than other children, and that tends to be the mum just due to biological traits.

I'm aware as I also don't get carers due to working part time. You can't call facts ignorance though.
Comparatively being a single mum working part time around 20 hours and being out of work as a single mum with a child on mid rate care and lower rate mobility will equal around the same income.
Obviously it's not easy for anyone with a single income or no free childcare, but it does make it financially fair.

@GiganticArkReadywithHottub I assure you, you and your children are giving just as much to your village.

I know our family dynamic has given both my sons a reality check of what some families have to navigate. It has given them empathy and communication skills they wouldn't have needed to learn.

It has framed my approach to work (third level education), and opened my eyes to gaps that were in my thinking.

It is very important for all of us to know that everyone benefits from engaging. And we will never ever have the skills and knowledge of their primary care giver but we are decent enough rookies 😉

It will continue to be mostly women giving up work until men/women’s wages are at the same level. Obviously most households will choose for the lower earner to give up work. A lot of women (including me) would choose having more money at the end of the month over having less but continue a fulfilling career.

Both my kids have ASD and probably ADHD. I worked and was the breadwinner.

I spent every day I could with the kids at weekends and when on leave. I went months without a haircut, never got my nails done or wore makeup. It was horrendous.

Their SAHD died in 2016.

I still work but I now get my hair and nails done and spend time doing my own thing cos they're adults.

I think I might be an exception that proves the rule of the generalised post you made. @GiganticArkReadywithHottub

I have an autistic son who is now an adult. I don't really fit into your generalisation as I've raised him as a single parent from birth with no involvement from the father, so of course I took on all the domestic and childcare duties. We split up when I was pregnant so not related to DS's autism.

I've never had a career as such as I had him young. His SN meant that it was impossible to work during the primary years. At secondary age he went to a specialist residential placement which would have allowed me to work, but I was still his carer and he would be at home during school holidays, I had no work requirements so I didn't. I am his carer now that he has left school and lives at home. I could work as he copes with being on his own at home, but I am not required to and I keep myself busy, so I don't feel the need to.

You are also missing out the strong genetic link with ND and the likelihood that one or both of the parents are also ND. That can make looking after a ND child, especially if you have different set routines that trigger each other etc, and it can also restrict the type of work the parent could do anyway.

I’ve been diagnosed with both autism and ADHD, as has my eldest child. My middle child is autistic and my youngest is now awaiting an assessment.

@Morph22010 , Yes I understand what you say. Our family events were a few years back.
Is there anyone campaigning for more residential provision at least for respite. I am not sure if longer term residential would be supported by parents now.
Schools cannot be expected to cope without huge increases of resources. Trained specialist staff would be a necessity to provide proper care.
Breaking point for families or schools cannot be far away.
Have any particular MPs or personalities working at this? Brian Rix worked for Downs Syndrome there is a Baroness Grey-Thomson who works for physically handicapped people. Is it considered part of the general disability 'problem' to be solved in a general way?

This I agree with.

We might have a specialist school place soon. But, if DD does get a place then there is no wraparound and the school holidays are a lot longer than they are in mainstream schools (an extra 5 weeks per year).

I found this to be true when I was in a professional role, in SEN education. I saw families monthly at the very least but never once met with a single father (although one once waved to me from the background on a video call!)

I also now find to be true in my situation, as the mother of a child who sounds quite similar to yours OP, and I see it in the family set ups of all the other mothers who I now meet.

I recently went to an open day for a SEN school and there was only one man there (with his wife). That’s because the men aren’t the ones who have given up or cut back on their own work in order to fight for their DC.

At several points I have worked the equivalent of full time hours and more, when dealing with schools, LA, tribunal, CAMHS etc.

That was before adding actual hours in with DD at home all/most of the time, or driving her to some alternative provisions (often for just a couple of hours at a time).

I set up my own business doing freelance work and I work at 6am before the DC get up, evenings, some weekends.. I feel ‘lucky’ that I was able to do that but it’s an impossible juggle at times and I do sometimes let clients down last minute. It all falls to me to pick up the pieces.

That would be fantastic but I think it’s a pipe dream as it’s such a massive change from what is provided now and would require a large amount of funds to be invested. At the minute councils can’t even provide school
places for all sen children during the school day which is a legal requirement

Mine are older now (17 and 24). One has ADHD and Tourette’s, one has severe ADHD and has suffered from bouts of poor mental health (absconding in the night, brought home by police, suicide risk assessments)
DH is hopeless, he just cannot cope with the emotional side of raising these 2 lads., it’s been left to me. I don’t think he’s missed a nights sleep over the last few years while I have missed many, driving round looking for DS, driving DS round in the early hours because he felt stressed in the house, not sleeping in case DS left the house.
I’ve worked full time the whole time because I earn quite a lot more than DH.
I wish we could’ve had some financial help for me to stay at home with them, I think they have suffered not having me at home more. The guilt I feel at not being available to them all the time eats me alive and I think it always will.

@Overthebow Perhaps local authorities could / should provide and fund wraparound care for children who need it, and it's up to them to ensure appropriate ratios. That would relieve the financial burden on families

We are the opposite. We have 2 ND children and my DH has taken the main lead in looking after everything whilst I kept working. Now that we both WFH it's easier to switch around but without his sacrifices, life would have been more more complicated

even If people want residential now it’s a massive fight that can take years and years, it’s not simply a matter of choice.

In fact things are going in the other direction where they are forcing more and more children with increasing needs into mainstream school with little to no support. I know of children who are doubly incontinent, non verbal, learning difficulties being placed into mainstream when the parents want specialist. The needs are played down by the la to get the child a place but then what happens is the school and child can’t cope so the child ends up out of school whilst they go through the long process of getting specialist.

even kids that might be ok in mainstream the support is diluted so they don’t manage, then it’s such a fight to get ehcp/ adequate support and over that time the child’s needs not being met means things can escalate.

that’s the school side respite through social services is even worse, our la give around an hour a week if needs are sufficiently high to meet their criteria, my son doesn’t have high enough needs to meet the criteria even though he’s in special school in a class of 4 and receives dla. Then people that are lucky enough to get the funding it comes as a direct payment so you have to then try and find someone who will work an hour a week for round about minimum wage.

the idea that people could get their disabled child a residential place at the minute is just laughable

I completely agree with what you are saying. One of my children has an eating disorder which is highly correlated with neurodiversity (autism, ADHD). It is not just that women are called upon to step up, they are held to blame when they do not immediately collapse their careers to care 24/7 for their children.