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

[GiganticArkReadywithHottub]

I have a brilliant ND child, who has both autistic and ADHD traits although not formally diagnosed yet. School recommend both assessments. I am also a single parent.
I'm have been researching the topic of mental health of mothers with neurodiverse children. One thing really stuck out for me from reading all these studies, which I guess I knew but didn't think it has been researched enough, which is that
1.) mums largely do take on the majority of duties relating to raising a neurodiverse child, meaning their career will often stall or even cease. The allocation of time for looking after their own well-being is often limited or non existent. This appears to be way more profound compared to parents of NT children.
2.) relationships massively suffer, marriages much more likely to split up.
3.) there is a much higher likelihood of parents of autistic children, in comparison to other families with two parents, having a much more 'traditional' set up with men being the breadwinners and women doing the majority of the parenting and domestic work. This of course could lead to power imbalance and vulnerability to financial abuse or hardship.

I know a lot of this is true for most mothers but it seems particularly pronounced for mothers of neurodiverse children. I was thinking about it and I do think the part about family structures fit with people I know who have autistic children' most are either two parents with the man as main breadwinner, mum usually unable to work due to partial or limited school attendance or not having access to appropriate wrap around care or holiday clubs, or single mums unable to work or being limited by the hours or type of work they can do.

This is obviously very 'no shit, Sherlock' but what is anyone actually doing about it? We can see the impact on women and the their wellbeing, so why is there not mite help in place. Many women are being forced to drop out of the workplace. They are statistically lower in mood than other parents? Why does no one care?

What doesnt help is a lot of special schools have shorter hours than mainstream and they rarely have before or after school clubs.

I dont know why more men dont step up. But I think it's very hard for individual families to act in a vacuum.

This is so true. Thanks OP for starting this thread.

One thing that won’t cost money is just (more) awareness and public acknowledgment, from educators and health care workers and children’s services, of the truth of this, the disproportionate toll on mothers caring for ND children, the sexism, the double standards for fathers.

(Edited for typo)

The only family l know in this situation did it the other way round; two ND kids needing a lot of support. The mum found it enormously difficult to cope with and really struggled to deal with it all; the dad stopped working in the end. With all these things, I think it’s just a function of economics (who earns more) and personality (who can cope with the requirements of the caring role better). The latter may well be affected by societal expectations of women, though, I suppose.

@RoseUnder don't forget the amount of money that unpaid carers are saving local authorities. It's millions per year.

And then there is added complications that don’t make it easy for people to work, in our area if a child gets transport they’ll only drop at home for example so child can’t be dropped at a grandparents if parents are working.

not sure if you are living under a rock but since it appears so, let me help you. parents of disabled children do not chose to give up work. They are forced to do so and this is largely due to the fact that there is a complete lack of wrap around and school holiday childcare. How about parents of disabled children are given the same opportunities to use childcare and stay on work? but we can't. Such a bloody stupid ignorant comment really!

You are right @GiganticArkReadywithHottub . In our extended family, older son ND early 20s and younger sister 18 NT. As a family we have always tried to support their mother as it does end up being on her. So she does get the mini breaks and respite we have a family rota we ensure she is supported in keeping her part time job but I believe this situation is an outlier.

We see her peers with no break, no career, no private pension and very limited state support. As a family we are spread out age wise so I think that helped. Her sisters and brothers children were adult, or late teens when her son ND started having challenging behaviours and the never ending search for supports and resources for him started.

I have no idea how people manage without a "village". Each jurisdiction has a duty to support it's citizens. That should mean respite, appropriate education and a realistic adult support system.

I would say a barrier I have faced in trying to raise this in the NHS is the idea thar talking about the toll and workload of caring for an autistic child or a neurodiverse child some how goes against the idea that neurodiversity should celebrated. Both can be powerful messages! One doesn't make the other less true.
I wouldn't change my daughter in any way but I would change the world for her or something like that.

Also it’s often the case that parents end up having to give up work as the school placement can’t meet needs. When my autistic child was in mainstream and wasn’t coping, he’d have meltdowns and school would exclude him and then expect you to pick up at the drop of a hat. I’d been with my employer years already so did have some flexibility which allowed us to get through this stage but I can see why a lot of parents end up losing or having to give how their jobs.

Having an autistic child is completely draining and restrictive and nobody ever seems to see it. id say even my husband doesn’t fully get it.

and yes - we follow the traditional set up as well.

My son has to come home straight from school because he’s exhausted socially by the end of the school day. He’s also often sick Although some of this days I know are days he can’t go in because he’s not been able to sleep or he’s just needing a break from the rigours of school. My husband is away a lot and we have zero family support.
Consequently I don’t work, I’m fine with this and love being at home. But my career is torpedoed. I haven’t worked in ten years now.

However we also have endless passions, special subjects. Sensation seeking and wild behaviour to counteract and whenever he’s away I feel so free. I was saying to my husband last night I feel really free because for once I haven’t got s little shadow by my side. We are very close, he is endlessly amusing and fun but he is very hard work.
Husband doesn’t get it at all.

@Morph22010 When school refusal was at its worst, my employer said something like 'you're great at the job... when you're here' and I could see I would probably be on the route to dismissal soon so I changed jobs. Luckily things just improved with my daughter but I can see that it's not easy to stay employed unless you have a flexible and understanding employer.

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.

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

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.

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

@bryceQ I'm glad you're making it work! I'm able to work full time (because I financially have to) and am only able to do that due to my support network. I tell everyone that. It is not any of my personal attributes, it is the fact that I have a lot of support. Even then, things are tough. I think things will get tougher as the years go on too. Being a Co parent actually helps as I have one day and one night off a week to study, in the hope of being able to go part time by secondary age.

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

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.

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.

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

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.

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 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.

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.