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?

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 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

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'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.

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.

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.

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 makes me wonder about all the dads out there, if the roles were reversed would they cope? Why is it that women seem more likely to have this inbuilt natural ability to read up on their child's condition, learn how to parent them, liaise with services, advocate for their children, compile evidence. This is across different demographics too. I've worked in children's services and mothers with limited education or experience of working with ND children seem capable of reading stuff online about how to make things better or be more effective in their communication, yet with fathers this seems to be less common. Why? Why is our skill set different?

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.

@Octavia64 what about a government scheme to actually protect people unable to work due to their children being unable to access education? Someone to pay their mortgage whilst they are on SSP? UC won't help with mortgage payments so if i, as a single parent, couldn't work due to my daughter being out of school, I would have to sell my house and then run any equity down to under 16K before UC would offer any support with housing costs.

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

@GiganticArkReadywithHottub your question on why mothers is something that has always bothered me. I really would love to see some decent research into it as I do wonder if as a society our mindset isn't as equality based as we think.

I have only seen one father swap as main carer as the child sadly physical reactions were getting dangerous for their mother.

(Again, please note I have a personal position on this and this post isn't it)

The current system is that if you have a disabled child there are these benefits:

DLA (for children under 16).

PIP (if the child is over 16)

These are both non-contributory benefits ie you get them based on need not income or whether you have worked in the past.

In theory you have access to childcare from 3 and again in theory you have access to state education from 5.

Councils are supposed to offer respite etc but a lot of that got changed in the move to direct payments where the disabled person holds their own budget.

It is illegal for schools to exclude someone because of their disability and so in theory parents of disabled children are on a level playing field as nobody has a legal right to wrap around care or holiday care so parents of both disabled and non disabled children get state education,

In practice....

I'm the main breadwinner. My dc's father is no longer in the picture since he lost his shit and hit our 7yo during a meltdown - SS stepped in and I stopped contact. My partner now (we're both women) has taken on a lot of the household running tasks since she retrained into a career that enables her to work on a self employed basis. I have a remote contract and my colleagues are in North American timezones, so I have a lot of flexibility baked into my day to day too. We share the workload as much as possible.

My 7yo needs me the most, though. He is on a reduced timetable, just got an EHCP. There are times when I don't know if he'll make it through his short days. He's very bright, but he can't cope in school. I was in school recently for a meeting (again, only possible because I wfh and all my colleagues are asleep at 10am so no work meetings) and he was in the hall, starting on a full scale meltdown. I was able to step in and calm him almost immediately, and he managed to stay in school the rest of the day. If I hadn't been there, I'm certain he would have been suspended for violence again.

I have to work. I out earn my partner as well as my dc's father. There's no choice. But it means I am stretched very, very thin, with no end in sight - there is no support for families with violent children. I'm grateful for the amount of flexibility I have with my job right now, but there are no guarantees in life. Our family circumstances could be upended with no warning - it happened already, earlier this year, and we're just about back on an even keel again. I don't believe it will last.

Sounds about right. Although we have 5 ND children so dh's career also went but it was 8 years after mine did. He works freelance, earning a lot less than he did before, while also taking on most of the care for DS1 and doing some voluntary work because he can just drop that when needed. He also does the driving because I can't and the Tesco shop. I'm a sahm and do the admin for everyone and the care for the other dc.

There's an interesting blog on the issue of fathers here:

theadditionalneedsblogfather.com/2019/01/17/where-are-all-the-dads-of-children-with-special-needs/

My personal experience was that he coped by withdrawing (which seems to be a common pattern) until he couldn't cope and then he hit one of them.

At which point our family fell apart because I couldn't allow that to happen again.

I suspect that fathers reacting badly to meltdowns/tantrums/violent behaviour are a big precipitating factor in family breakdown.

The biggest thing in turning around our whole household and my ND 6 year old violent outbursts/meltdowns school refusal. Was that my husband finally got it. Finally learnt the skills it takes to do what most women have inherently learnt because society expects it from us.

Suddenly we are all on the same page and all my children feel more supported and understood. Routines are respected as both parents are on board with what's best for the children. My husband found a flexible job and puts in boundaries so family life is protected. Before he would of told me this wasn't possible.

This absolutely is a feminist issue.

We still have the issue of childcare no wraparound care and the small holiday care we have is 9 till 3 or some 9 till 1. My child would not cope going more than once or twice in the holidays. No family help either so we both need flexible jobs or as my husband is the higher earner I scale back/self employed. I would love to have a more involved career/earn more but the logistics and the need to have flexibility from the start make it so hard. Typically once youve been in a career for years and "earned your stripes"you're offered flexibility. I find its a hard situation to transition out of yet if I had a career before children I'd potentially find it easier to get back into. Or no as I've still have a large gap out of work.

It makes me very angry the years I've struggled with what felt like essentially my husband not believing me or understanding the importance of it. The research the parenting methods the sacrifice. It angers me that lots more women are still in this situation. On the whole it's an entitlement issue with men and its skills they haven't learn because they aren't Typically required to in society. Most are absolutely capable though. But it's easier isn't it to let someone else do all the hardwork. Easier to think it's unnecessary that women struggle more because they are "sensitive"

The all female SEN team think my husband is wonderful for how much information/understanding and willingness he shows.
Major eyeroll. Yet women are still seen as asking for too much irrational/emotional. Ergh.

Hmm… I manage most of the paperwork/ hospital appointments etc, but everything else is completely the opposite in our household. Looks like we are the minority!

It's true, you do need to keep school hours free. I can only do 24 hr weeks around my husband's full time. So hes there when I'm at work and I'm there for the day time stuff.

I'd go doolaly being at home all the time. Hats off to those who do.

DH asked me recently what would have happened to DS if either of us had had to parent him alone. He was basically saying DS may not have been diagnosed and could have ended up with few or no exam results if he'd had to parent alone. He's have had no clue how to navigate things. (DH doesn't read anything anyway, no idea why as he's quite academic)I said if I'd had to parent alone I wouldn't have been able to work at all (I work part time because wrap around care was never going to work) and I would probably have given up trying to get DS to school and home educated (badly) he'd have received a diagnosis but we'd have struggled financially ans life would have been miserable.

In answer to previous PPs, I think it’s Mothers because on average we care more. And because we have fewer options than men - because we care more (eg options of walking away, not coping, ignoring or playing it down, not seeking out and using SEN child-friendly strategies, not fighting for medical and educational support).

Not saying men don’t do this, but on average, fathers are much more likely to use one of those options than mothers.

How you define “care” is of course up for discussion. Related to the words “cope”, “invest”, “compassion” perhaps. Agree this is a hugely feminist issue and I’d love to see proper scientific research on it to inform public policy.

Is your barrier to that the cost?

(I'm not being snarky, I’m just interested)

For mid range asd struggles and learning difficulties you'll be eligible for £100 a week in dla and if you're not earning over the threshold then also carers allowance.
If the child has lower needs you may only get lower rate, but if it's significant enough that you can't use childcare to work it's very easy to get dla approved.
If your child has an ehcp then apply before diagnosis as they will use the ehcp as evidence of needs.
If not you can still apply but may only get lower rate and will need someone who knows the child to fill out the "person who knows the child" section as evidence.

I think there is a big difference between having a job which you've been in for a long time, have some seniority and flexibility and trying to establish a new career when you are the parent of disabled children. The latter is extremely difficult.

I literally got fired from my job working with children with disabilities as in their words 'I'm unable to balance my work and my home life' meaning I had too many appointments they were fully aware I had children with disabilities even working in the disabled community I wasn't given the support needed from my employer.