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?

@MistAndFog DLA is about half of my monthly mortgage payment. It's a drop in the ocean if you have to give up a good job and you are the sole earner.

I was an unpaid carer for 19 years. DS1 is autistic and DS2 wasn't diagnosed but I'm sure there are many traits there.
We had no support from GP or other family so we've (I've) done virtually all of it alone.
I've now got a full time job but I've had to go in at entry level with crap money, when DH was able to further his career and has a good pension. All I've got is state pension which I need to make up another 8 years for.
If DH ever leaves me then I would be screwed. I feel really stupid for not thinking of this sooner.

I want to go a bit flexible after I've got myself established in this job. That will also kill any career aspirations but I can't manage the 9-5 being a carer even to an essentially grown up and more independent DC.

I mean grandparents when I say GP not our GP lol

Ditto

it can be cost or availability. For my child there is just no suitable childcare. He’s in special school in a class of 4 but doesn’t have a learning difficulty. The Sen holiday schemes as well as being expensive (ones near us are £150 a day for 9 to 3) are for all types of Sen and the activities aren’t the things he wants to do. The mainstream schemes especially sports ones he’d love but he can’t cope with plus he’s 14 now so they don’t run mainstream schemes for that age anyway. His special school is running a holiday scheme for a week this year which would be great as I’d imagine it’s the same TA’s as from the school but typically it’s the week we’ve booked to go away.

as regards before and after school, often the schools are a distance, my sons school is over 10 miles away for example. Transport can be provided by the local authority but it is not flexible at all and will only drop at home, so wouldn’t drop to an outside Sen after school club for example. We’ve only got the one child so manage pick up and drop off around working by early starts and late finishes

Absolutely. Husband works 6 days a week. I have had to remain part time. I can only do that because my parents help us a lot. I can't consider progressing or promotion because I'm needed at home. My pension is affected. We can't swap, because DH is not who our DS seeks out for comfort. I love my DS, and his sister dearly, but I'm watching other less capable people being promoted around me and it's sometimes soul destroying.

Well I'm a lone parent to 4 children 2 autistic, their father doesn't have any contact at all with them 🤷‍♀️

People make assumptions too. People see special schools and just imagine there is an easy way of accessing them. Rather than starting mainstream school, realising it's not working, child refusing, waiting for EHCP, school trying to meet need, urgent tribunals, special schools assessing, waiting for a space, slow transition, etc etc. It can be years of having your child out of school. This is how your career dies.

I cannot find suitable childcare for my children anywhere it's all advertised as sen friendly but when you look into it its just higher functioning children that cope in mainstream. No wrap around at all at my daughters specialist school where the setting and staffing is already appropriate to the needs of children like mine. My daughter will never be independent so I can't even wait until she ages out of school to work and try to give us any kind of future or security. People that don't have to live in our shoes think that all the support and money is flung at us and literally have no idea that it's all fake and no access unless your child only has milder disabilities

@Sprinkles211 very well said. Have you thought of expert by experience type work? I think you'd be great

Because most men are completely indifferent about having children and just ‘go along with it’ to make their partner happy/stop the nagging/ultimatums. Thus, when it comes down to it……’you wanted kids, you deal with it’…..becomes their mentality. Even if they don’t necessarily say those specific words, that’s what they’re thinking. Even the ones who claim they want kids are usually meaning ‘I want kids but I want you to deal with them and I’ll just dip in and out when I fancy it’. The sooner women realise this the better imo.

@PostItInABook well that wasn't the case for me. My dc was an accident. I gave him the choice to not be there, I was ready to be a single parent. He chose to commit.

I've never heard of it? I actually started a thread on sen just yesterday about my frustration at lack of childcare I just want to be a part of society again. The recent disability and carers bashing that's been around since the pandemic end has really took a toll on my mental health not to mention realising that jsa is £10 a week more than carers allowance that was a bit of abody blow to feel even more devalued.

Availability! There is nothing. Nada. esp for older teens who have the mental age of a much younger child and need 24/7 support.

I don't think there should be an extra charge if available either. We make buildings etc disability friendly by building ramps, lifts ect and would not charge a wheelchair user extra to access services simply because we built in adaptations to make it accessible. The same should apply for childcare. It should be properly costed and accessible for all. Parents of disabled children don't outearn those of healthy children. Any decent society would make sure it acckmodates those with extra support needs and that they are fully included without bankrupting the families.

quite likely, that one or both parents also ND

Totally agree. Had to give up my career and now do a job that works round school hours. DH takes our child out on a Saturday morning, does the morning routine and then goes on about how difficult it is with ‘I know you do it every day’. Yeah I do and I don’t go on about it.

If your mortgage is 800 a month then the 400 dla added to £80 a week carers if out of work will almost cover the mortgage.
There is also 100 something extra added to UC for each disabled child too, then the usual UC monthly payment to cover bills and food. Its obviously not ideal but still ends up about £800 a month better off than a parent without a disabled child, which does pretty much cover what someone would earn working a low wage ~20 hour a week job which many mums do to fit around school hours or childcare.

We do not get UC as income too high. I manage to work very part time and earn just above the threshold for carers allowance. We only get DLA. I would cross net about 2k more per month. Instead we have about £500 in disability benefits. So a net loss of 1.5k per month. The money we get for the disability is used to pay for private therapy as we get nothing from the NHS and it eats up most of it so there is nothing left over. We just lose out financially.

and if you work 20h even on BMW, it takes you far above the threshold for carers allowance! So much ignorance.

it doesn't pay to have a disabled child. in fact, read up on the statistics - we are the sort of families who are most likely to be in poverty.

In my opinion one of the reasons why families resort to the "traditional mode" is because in times of crisis this is what works best.
In times of war, families are literally split so that children and be raised in safety.
If children are very seriously ill and need an immense amount of care then it isn't really feasible to work within set hours.

When it comes to ND, and how it runs in families I can see why many families work this way.
It's the way my own family works and that of much of my extended family.
Many people on the ASD/ ADHD spectrum prefer to concentrate on one thing at a time. It's really takes more out of us It often doesn't suit us to have to constantly split our time between family and work, and so even though we may wish to have a more balanced life, we can't give our all or get completely into what we are focused on.

I realise that if there's only a single parent then it's different, but in my family we mostly are a focus on one thing type of set up until the hardest part is over. I know that unfortunately for some families this is more akin to lifelong, rather than children reaching early adulthood.

@MistAndFog but I'm still disadvantaged. I'm giving up the career I've trained for, I'm giving up my experience, my aspirations. It's not through choice, and my ability to cope with my child 24/7 is saving the government a heck of a lot of money. But it's at the expense of my wellbeing. My mental health. My sense of self.
More adjustments, more flexibility, more understanding from employers would allow more mothers to carry on working in some capacity after having children. Ditto more wrap around care and holiday clubs for disabled children.
It's not that the choice is work or starve. But there is no choice usually when it comes to one parent having to give up work.

Boraccha there was something about your post that just clicked with me. I'm also in a fast paced job. Most of the time it suits me, other times, like you say it really gets me down

But op I think you have to look at it with the ‘having it all’ thing- you said ‘what a waste of your potential’ but it’s not, your child/ children are lucky that they get to reap your potential in you being a sahm. Children of wms get it too though tbf but years ago when I dropped my career to be with the kids, it was a mixture of a financial thing and the fact that me and dh together couldn’t be the parents we needed to my now 14yo who we were having assessed for autism (he was found by two specialists not to be autistic) when they were in childcare from 7 in the morning until 7 at night. It wasn’t a sacrifice, it was a choice and a change that had to happen for us.

edited to add it was dh vs me as to who be a sahp- I wanted to be, and I know a lot of other mums that are happy with the same situation. I’ve gone back to work for three years which again didn’t work and now am wfh, which does (and I’m lucky to have the opportunity)

I have 2 children with Autism, one also has ADHD. I work term-time only so we don't have the problem of holiday childcare, but the holidays are fucking hard.

I really like my job, which I know makes me lucky, but intellectually, and in terms of my skills, education and experience I could definitely be working at a more senior level. The fact is i'm too knackered and something has to give. I've had the opportunity for promotions and DH always encourages me to "go for it", but doesn't pressure me when I tell him I just don't have the headspace to add anything else to my plate. He says it's totally my choice and he supports me either way...which is nice, right? Except that what he doesn't quite seem to get is that it doesn't feel like my choice. Because I know that taking on longer hours and more responsibility at work combined with caring for SEN kids would push me over the edge. I also know that although our DC would probably mask well enough to appear to cope ok in wraparound/holiday childcare, it would raise their anxieties massively and the fallout at home would be significant. I can't put them, or us, through that.

DH's career has gone from strength to strength since we had the kids. I suppose we've made the decision to prioritise his work because the reality is that his earning potential far exceeds mine. No matter how many hours I worked I would never be able to bring in as much as him because our industries and skill sets are very different. He works really hard, which facilitates me being able to work part time, term time only but I don't think he quite gets that if I wasn't around for the kids he wouldn't necessarily have the freedom to pursue the career opportunities that he has. I say he doesn't 'get' it, but actually I think he's probably just never thought about it.

DH does his fair share around the house, he cooks, he cleans, and he is a very involved, loving and present Dad when he's not at work so I know that makes me luckier than many. But I do feel that on top of everything else I do, I've had to educate him, as well as myself, about ND. I'm the one who does the reading, the research, communicates with school to make sure their needs are met. Don't get me wrong, he'd do those things without complaint if I asked him to, but that's not the point is it? No one asked me.

Agree I’ve lost count of the amount of times I’ve seen on other thread suggestions for the poster to think about changing their child to special school like it’s some sort of genius suggestion that the poster hasn’t thought about. There also seems to be a misconception that it’s parents of children with Sn who actually want their child to be in mainstream against the suggestion of professionals rather than the other way round.

@Marblessolveeverything As a lone parent with a young SEN child, your comment made me cry! MiniFool and I have a small village who will do whatever they can but are limited by a lot of practicalities. Thank you for being the family that we all need 💝