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?

This absolutely, completely and fully describes my household. My children are a lot older now though, so it is easier to find activities that bring us all joy at the same time. My career is shot to pieces though.

@WannaBeGardener I think if your marriage is solid and happy then it's not as bad but I imagine if it was abusive or unhappy it would be ten times harder to leave with a child with additional needs. Especially the changes to their routine, sense of safety, way of life, any activities or schooling. Just a nightmare really

Unfortunately as you mention, this is the case in general terms for most mothers of all children. Just far more pronounced in ND families re the level of needs as it is in families of disabled children or chronically ill children. For some women it may be through choice for others it's Patriarchal. Joining a local group for similar families could be a source of support.

I have an autistic child who is just about to become an adult and I am a single parent. Its just been the two of us. I do still have a career, but I wholeheartedly believe that it was COVID and being at home that got us through 2020 to today. Hitting 13/14 at secondary school was when everything started to really ramp up in terms of my teenagers MH, needs and school refusal. If I had not then been able to work at home since, I don't think I would have retained my career and if school hadn't stopped during COVID then those couple of years would have been so much harder.

This year I also found out that I am neurodivergent. It's making me take stock of a lot of things and I am absolutely burnt out and exhausted from all of this having taken on the majority of parenting as you say. Although both being ND, on reflection, has meant our homelife has been pretty ND friendly.

Yes this has definitely been my experience. My son has multiple diagnoses including Autism, ADHD and some physical stuff. Although I have managed to retain my very part time NHS role, I am aware that I am very unlikely to progress any further due to my role as a parent carer. I had an excellent career prior to having a child with disabilities. 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.

@PTSDBarbiegirl but there is significant differences in raising ND children, the differences in gender roles specifically. It would seem that this topic does need more consideration, policy change, media attention etc.

I’ve worked my way up my career for the last 13 yrs and I’ve just handed in my notice. I cannot have my career and be a parent carer anymore.
multiple societal systems need to change in order for it to change. On a wider note, as an example, look at the qualifying criteria to receive carers allowance and then what you get for caring, it’s abysmal

@YellowTassels yes, I think I'd be entitled to about 400 a month DLA and then whatever UC would give me, it's nothing compared to a full time salary.
What a waste of all of our potential though?

what help and policy changes do you envision? Help from who? Surely it’s down to the individual families to decide who gives up work or goes part time, and who focuses on their career? The man could give up work instead.

Yes describes our family set up
I had 3 under 3 so I could get back to my job that I loved
Middle child diagnosed autistic age 3 ,smearing , violent
No childcare settings would take him
Guess who didn't go back to work
He's 25 now and I still can't work because he cant be left alone with his teenage sibling( who also is autistic and not in education setting away from home )..he will never leave home ,he's to vulnerable
Husband carried on ,his life didn't change
I now get housekeeping rather than a wage
No pension for me ,just more of the same ,stuck at home with 2 autistic sons

I think this is true for children with additional needs due to ASD and/or ADHD, and for children with all other additional needs (physical disabilities, chronic illness, eating disorders, learning disabilities, anxiety etc). When a child needs more support and the usual childcare options aren't suitable, the mother is more likely to give up work, usually because she earns less.

I fully agree. My eldest is ND and I also see some traits in my middle child, although I’m still taking a watch and wait approach.

I also have ADHD and a very fast paced job that by its nature sees me running on adrenaline almost all the time and accountable for some big decisions.

It’s shit. This morning I locked myself in the bathroom and just sobbed. I’ve actually made a doctor’s appointment for tomorrow to try and see if there’s a way I can get signed off for a few days at least without me having to explain the reason why, which is simply that I am burnt out. I am constantly in flight or fight mood, I have a permanently upset stomach, my weight fluctuates like crazy and last week a colleague confided in me that our big boss had asked ‘what’s up with Borracha, she looks permanently angry lately.”

My husband is very supportive and understanding but still doesn’t fully get it.

I think you'll find it is the same with all families with a disabled child.

DD has very low support needs and no challenging behaviour with her autism. I'm a single parent and have worked since she was three, term time only at Primary and had grandparents that covered childcare - I would have done this anyway and didn't know she was autistic then. Secondary school things got trickier and I career changed to a fully flexi role which allows me more time in the morning as I don't have a specific start time and can flit in and out to school meetings when necessary which is useful as she can sometimes find school drop off tricky and have tic attacks it also allows me to be home and to catch up with her, make she she has food, drink and charged N/C headphones when she gets home.

At the end of the day someone needs to pick up the caring responsibilities of all children and for a higher needs child its going to have to be a dedicated person. If you are in a relationship though your partner should be providing you with some respite to take care of your own MH and wellbeing. Ofcourse what probably makes it trickier is the high levels of ND children with ND parents (whether they are diagnosed or not) which makes everything trickier. With other disabilities you don't often have the parents with the same one but ND conditions are so genetically linked that it's just an extra layer of difficulty.

SEN is a feminist issue for sure (all unpaid care work is). We're slightly outside the norm in that I work longer hours and get paid a lot more. We've been ok with school attendance so far but if that becomes an issue DP will have to do staying at home out of financial necessity. I do the paperwork though and all the liaison with schools and services which also seems to be the case for all the SEN parents (and parents of children with other disabilities) I know.

All of the local SEN services assume there is a non working parent- every information session and support group is during working hours. And the local asd charity whatsapp group I'm on is 95% women. The entire system is set up to expect you not to work.

Yes hard agree. There are more needs than can be accommodated within my current family set up. It’s mine that go to the bottom as an NT woman who has been socialised to make myself smaller and smaller until I eventually probably disappear.

My kids needs are manageable just, but I’m dreading the secondary transition when it all seems to go to shit.

Since ND is often inherited there is the stress for ppl of living in undiagnosed mixed neurotype relationships where it’s genuinely hard to understand each other.

@GiganticArkReadywithHottub

So true. I worked pt and lost even some of those jobs because I was being pulled to the school to pick up due to school refusal, blackouts, panic attacks or whatever. Then there were the appointments, yes we were fortunate to have a specialist mental health nurse who only dealt with autistic teens from 14-17 who we saw fortnightly - monthly, plus various therapy sessions over the years (diagnosed at 2) and also involved in research projects for heredity autism (not me, I'm not nd, her dad is, he worked though).

Oh then we split up ..,

@Overthebow but they don't though do they? The men don't give up work.
This seems even less likely when you're talking about ND children. Purely anecdotal but I see many of my friends with NT children able to go on mini breaks, go to the gym, go to the theatre, go to the pub. I don't see many (any actually) of my friends with ND children being able to live a similar life, but their husband's do. Is it that the children don't cope well without their mums around, is it that the mums feel guilty as they're not earning a wage, is it that they're just too exhausted to even imagine a night out?
Having one of each I can categorically say that raising a NT child, for the majority, is easier. They can access anything, they get invited to play dates, party's are all drop off affairs, sleepovers, summer camps, afterschool activities. For me, it's a breeze in comparison.
The societal changes I would like are around less discrimination in the workplace, mandatory training for employers about the requirements for reasonable adjustments/ family friendly practices, more support from school around EHCP's etc (I consider myself reasonably well educated and it was a difficult process for me to navigate, lots of parents just don't apply or know how to), free training or opportunities for parents of disabled children and grants to support this, more respite opportunities, free counselling for couples and wellbeing support.
Basically lots of money required but why can we find it for other things?

I’m mum to a now teenage disabled son and two tween children. I work part time and I have done since my teen was one. I do most of the admin but my husband does his fair share of physical care especially as Ds1 is now a young man and it’s physically more demanding to care for him. Interestingly medical settings seem to still disregard male carers - if DS1 is say in hospital with his dad they wait until I’m around to ask questions or I get a follow up call from the consultant, a letter following his paediatrician appointment notes that “mum was working” no mention of dads working pattern or responsibilities! Lots has to change to support mums and it’s would help massively if the hospital and health care settings that we rely arent part of the problem.

I’ve NC for this but it’s absolutely correct. My 6 year old has never been to school full time, currently not in school at all with no school place on the horizon. I’m never alone, there’s never a break. It’s relentless in a way I don’t think it is for parents of NT 6 year olds.

In Jan 23 he was attending school for 30 mins a day. He’s never been for more than 4 hours. He stopped attending altogether in April of this year. I walked out of a 15 year teaching career as I’d gone part time after he was born and so DH earned more. Also, I cope much better with him than DH so it made sense.

When DS is deregulated he is violent, aggressive and due to having a demand avoidant profile I spend my life walking on eggshells and feeling like I’m in an abusive relationship.

One other consideration is that so often there is a ND parent when talking ASD particularly and that adds a strain often unthought of. DH almost certainly has ASD though much less obviously than DS and the strain of trying to juggle both their preferences or needs and rigidity of thought is impossible. They wind each other up in a way I don’t understand or can’t explain.

If I could leave, I would. Our marriage isn’t particularly happy though equally nothing particularly wrong. DH would say it’s fine- for me, my emotional needs aren’t being met, they’re not even considered. He’s not capable. I won’t leave because DH and DS would never get on long enough to spend time together without me there, I can’t leave because financially I have no choice and we have no friends or family and so I have no support. Whilst I’m not happy, I’m not so miserable I can’t carry on and I’ll do whatever needs to happen for both my children. This works best for them.

I booked a drs appointment to discuss my mental health but they wouldn’t do it via phone appointment and wanted face to face. I can’t do that because DS hates drs and would meltdown having to go with me. Instead I just get up each day and think “one day closer to it all being over.”

@Bluecrumble hear hear!

@Mummabear2212 I'm so sorry to hear that. I know you're probably going to think 'what's the point' but please persevere with the GP. Tell them you need a phone or virtual appointment. They diagnose people for autism virtually now for gods sake! Why won't they speak to you?
Don't give up your life. You can quietly make plans to leave. Were you ever happy together?
I just said (and I am not you and my ex was abusive) you need to move out. I will not be able to rent. You need to move out and rent as logically it will be easier for a single man. He shouted and screamed but he did eventually. It was not easy and took years.

In an ideal world parents shouldn’t need training in ehcps, the process should just happen and what the child needs to access education should be recorded in the ehcp and put in place. Parents shouldn’t need the equivalent of a law degree to navigate the system and get what their child is legally entitled to

I would say 'yes' to all of what the OP has said. The caring usually falls to the mum and by caring, speaking from my own perspective, that means scheduling appointments, taking him to appointments, filling in forms, battling the LA for the best placement for schools/EHCP, teaching him when school placement has failed, reading up on SEND Law, supporting his mental health and anything else he needs.

Of course then there's the usual household chores to be sorted and work. My DH is also autistic so will do housework but needs specific instructions and I am self employed so fit my work around appointments.

I am on a Whatsapp group for mums (although there are a couple of dads too), who are all caring for their ND children and we've all said the same thing; it can be lonely, even in a relationship, it is definitely stressful and that stress can affect the whole family. It's exhausting and time consuming and very little time is left for 'me', and even when we do get that time we feel guilty!

We both work full time, ds is in special school and we’ve arranged so dh has a job with an early stated 645 to 245 so he can do pick up, I do drop off and then finish later get home around 630. We are right on the edge of just managing though and it’s really stressful at times. I’m putting loads of money into my pension as I think I’m going to have to take early retirement or at least cut down hours when ds finishes school as there’s nothing suitable available after

This is so accurate. Everything you've said is true for me.

From having children with autism I now have young adults with autism and I still can't work.
It's impossible to commit to a workplace when I am a carer elsewhere.

My mental health is poor, my pension is non existent since the birth of my first baby decades ago.

Combining this with the disability reforms to make it so much harder for disabled people, I fear for my children daily.

It's not a good country to live in if you are vulnerable.

Mahatma Ghandi said:
'A nations greatness is measured by how it treats its weakest members'

It's so true. I despair of our government.