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

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.

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.

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.

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!

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.

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.

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)

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 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.

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

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!

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’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.”

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.

@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 ..,

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.

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.

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.

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.