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

TBH, it's harder when they are past school age and still need full time care.

I think this is really interesting.

To declare my interests upfront - I'm disabled due to an accident. I have twins. One is autistic and one is autistic and has adhd as well as other physical disabilities.

There's basically two perspectives on this.

One is the family responsibility perspective. So in the same way that many people feel that dads who have left their wives and children should support them (which led to the setting up of the child maintenance service) many people feel that disabled children should be supported by their family.

Lots of men leave children and don't pay anything towards them. The CMS service has 93% of people paying cms are male and only about 75% of those people pay anything at all towards their children.

Parents of children with autism (or other disabilities) are much more likely to divorce.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2928572/#!po=0.877193

So from the family responsibility perspective, there's an argument that the fathers of these children should be supporting them much more both financially and emotionally.

Personally I think that having a ND or disabled child puts so much strain on a marriage that state support is needed, but it's certainly true that all children do better if able to be with parental figures that they are attached to, and the previous approach of putting them in a state institution at a very young age while preserving marriages was not good for the children and often what would now be considered abusive.

(Link - the state institutions were hospitals and were known as institutions for the mentally defective)

www.qmul.ac.uk/media/news/2017/hss/an-autism-revolution-in-the-history-of-child-development.html#:~:text=Caption%3A%20'Before%20the%201959%20Mental,institutions%20for%20'mental%20defectives'.

In the U.K., over the last 14 years there's been a massive cutting of a lot of the government services that supported carers. Respite went, day centres went, surestart went, a lot of education funding has been cut meaning that children with any kind of disability now find it harder to access both education and any kind of integration into society.

Pretty much by definition, disability means you can't access services intended for non-disabled people. Expanding that so that disabled people can costs money and the focus over the last 14 years has been on saving money and cutting back the state.

So respite was replaced by personal budgets. So in theory disabled people (adults) get money which they can choose how they spend. But in practice it's hard for them to get carers, it makes them an employer etc and it's not really been a success.

With disabled children, in the U.K. the legal responsibility is in the parent to educate their child. So it's very firmly a family responsibility. State education in mainstream simply isn't suitable for many disabled children which is why so many drop out.

I don't have any answers. My DD dropped out of state education and it caused a massive strain on both me and my marriage. But I'm not sure what else could have been provided.

yep. Absolutely. Ds was different from being a toddler and needed so much extra care. We got a nanny when he was small which was better than nursery. At pre-school i was regularly being called in to discuss behaviour, luckily they were incredibly tolerant. At school, it all started to unravel. Dh was pretty much in denial for a long time. The epic task of navigating the send system was all driven by me although dh did attend meetings with me. He got a lot of “credit” for this as I suppose lots of dads won’t/can’t attend.
The system is incredibly sexist. I’m certain that the attendance of a father made the authority figures take it much more seriously than if I’d gone alone. A lot of what I said was dismissed, then dh would say basically the same and people would listen and note it down. drove me fucking mad.
fortunately, we are both self employed so had complete flexibility. But it was me that gave up huge amounts of my time to not only navigate the system (ironically dh does have a law degree but I feel like I earnt one by default) but also to manage Ds’ behaviour at home as well as possible. I read so many books and researched online. I don’t think dh did any reading at all.
hence dh really struggled with this and for years thought ds just needed to be made to conform. It led to a lot of stress and distress for all of us. Outbursts, violence, damage to our home.
Family support was useless, possibly due to sexism again as my strategies for dealing with Ds were dismissed in favour of dh’s ineffective ones.

eventually I managed to get Ds a place in a wonderful private special school and he was helped so so much there. Went back into mainstream school in an enhanced resources unit, and over the course of his time there (due again to the great support) became almost fully independent.
After a lot of effort I finally found a private psychologist online who actually worked with volatile children in a residential home and he understood our situation (first person ever). Dh finally got on board (at least 75%) and things got so much better. The counselling cost me several hundred pounds. If I hadn’t still been able to work, I wouldn’t have been able to afford it.
Dh had never actually listened to me, his own wife and the mother of his children, but he listened to a man.
obviously it put absolutely massive strain on our marriage but we have managed to stay together.
I still spend the majority of my home life in deescalation mode. It turns out that dh is also ND (now diagnosed) and dd too (not diagnosed). they all depend on me and it’s difficult to leave any combination of them alone together as it generally kicks off pretty quickly. I’m constantly coaching them all on nd awareness and effective, assertive non-aggressive communication but it’s fucking slow progress.
Like I say, if I hadn’t had the incredibly flexible career set-up then there is no way I could have continued working. The system absolutely dismisses mothers and in my circle I find that many many fathers can’t cope with the concept that their child is ND so mothers carry the vast majority of the burden, give up work and pretty much sacrifice their entire lives to their children. This will never get recognised because we are all too exhausted and broken to fight to get noticed.

It's not necessarily a choice. I chose to be a SAHM for a while, not anticipating the changes that came later. Meanwhile my DH's earning potential grew while mine didn't. The children got older, I started building my career. My career was just really taking off when things changed and I had to 'take a break'. At this point, I don't think I'll ever get back to it. There's no choice as my DH's earning potential far outstrips mine now. We need that income and I'm just better at the caring role.

This is so true!my twins
We're micro premature now 9 in separate schools both ND. I completed my MA 5 weeks before they were born. My son was on oxygen for 2 years. Somehow I managed to progress to a senior role.Sadly I had to turn down a management role for various reasons I.e no wrap around care in a sen school etc also my husband earns significantly less than me but it was always assumed I'd be part time do the medical appointments etc. Iv now taken a job that is mostly WFH aside from delivering course around thr UK (around once a month). It's hard really hard sometimes I wouder what the point of it all is? The mum guilt and professionals assuming mothers of ND don't work.

I'm a lone parent so it's all on me regardless. But yes, I think having a child who needs extra support means one parent needs to work fewer hours to support them. I have teens and still work 3 days a week as I need to fit in admin and meetings. Even then I forget things. *just realised I need to send an EHCP enquiry email this weekend.

its chicken and egg though, there’s no provision so people can’t work which means the demand isn’t there. It’s possible to access some Sen holiday clubs through our la but only 5 days in the summer and 9 to 3 only so it’s a drop in the ocean of having to cover holidays, if parents want to pay for more days it £150 a day who can afford that. I’m lucky in that my mum is retired so helps out and we cover holidays my a mixture of me taking some additional annual leave, dh taking annual leave and some working from home

I think mostly it falls with mums due to pay. i.e. if you decide one of you needs to give up work / or have less hours to be available for care / drops off / appointments etc, it makes financial sense that the person who does that is the one that gets paid less. Unfortunately, this is often the woman. When DS was small, that's how it played out for us

Mine flatly refused to give up his job ,plus he's like an unexploded bomb ,he would of made things ten times worse .
He doesn't believe in the system,thinks kids don't need an education,that they should be running bare foot In a forest.
So he would not of spent years fighting for ehcp , special schools ,and tutors at home and on line school , through tribunal,like I did ..if he had been in charge they would be adults without a single qualification.......and he went to private school ....so make of that what you will

I accept there's an element of choice in that, although it doesn't feel that way. I could get my child into some sort of state funded independent living arrangement now that they are no longer a minor. I could get them into full time day classes for SEN people and work during that time.

I just don't think that is in my child's best interest, they would not want it and would be really upset if I made them do it, but it is an option. It would restore all the money I give up in income and funding them myself too. It just so happens that my child is worth more than that and I have made the personal choice to care for them in the family rather than outside it.

No criticism of those who can't make that decision or choose otherwise, it just wasn't the right one for us.

I would pay more for wraparound and holiday childcare, if I could find it. It just isn’t there!

I think even at a premium cost any such places would be snapped up.

Agree that more appropriate schooling and childcare would help more parents to stay in work. I have a friend who has struggled to build a career for herself but now feels as though she's just waiting for the day that her DC are no longer able to cope in mainstream provision.

I’m guessing it would cost families more as there would need to be different staff to children ratios? Most wrap around and school holiday clubs are run by private company’s who need to make money. If the demand is there though then there should definitely be more provision.

I'm in the same boat ,I'm also diagnosed autistic
I worry for my children and myself

If you read my post properly I didn’t once say parents choose to give up work. I sad it was a choice which parent gives up work. It could be the man, that’s a choice that needs to be made by the family and not just default to the woman giving up work, but that’s on the family to decide, no one else. You make a good point about wrap around though, there does need to be more provision for that.

I would like to be able to access childcare. Wrap around and school holidays. That's is my main barrier to employment. I don't understand how it can be legal to cut off families like ours from access to childcare. And I don't think it's asking for the moon on a stick either.

A lot is down to employers isn’t it. We’re “lucky” that both of our employers are very compassionate and flexible about our needs for DS, so we can share what is needed and it doesn’t fall on only one of us.

If either DH or I had unsupportive employers than the other would have no choice but to bear the brunt of it alone.

What do you want to be done about it and by whom?

Things would have to be violent or dire for me to leave and that would be a big factor.

I see what you're saying in groups I'm in but it's not fully the picture for me.

My son has high needs, diagnosed autistic at 2 (5 and a half now) fully non verbal, limited understanding, no safety and has pica, attends school but not full hours, closer to 4. I do most of the daily care though we split the school runs. Husband very hands on. I have my own business so work around my son. Have a successful career. Our relationship feels very secure though I agree the stress on it is challenging. I do take leisure time, eg go to yoga class at night, have a massage sometimes.

With a child like ours there's no way at all you could both work full time but I'm thankful we've found a sort of way to make it work. Though I agree the days are tiring.

Yes, lots of sen children have big chunks of time when there is no school place.

I'm my ND child's secure connection - so it's me that is DCs bridge between meltdowns and recovering from them, regulating, building connection etc.

Like mumma bear said it's like eggshells because the triggers can be the wrong spoon for DC cereal or something seemingly tiny that I can't always predict.

I'm in the middle of a career change/just giving up because although I love my job, I have no support at work (they are aware) for the sheer amount of extra stress your under as a parent to a ND child. I can't ever switch off because I never know what is coming next, I have to be hyper vigilant of DCs needs and triggers just to get from one hour to the next.

My partner is the breadwinner because it's the only thing we can do rn.

SEN is a feminist issue for sure.