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?

I think you only have to spend a few mins on MN to see that there's a lot of women who think it's perplexing for a mum to not be the primary carer, that they should manage the 'oh so hopeless' man.
I get fed up of the judgements, mainly in my experience, by those with nt kids about how anything other than man = breadwinner, woman = part time/ lower earner and first point of contact for anything child related Is wrong

The dla is supposed to be for extra costs of a disability (which will vary depending on the exact disability), so you aren’t better off than a parent without a disabled child as the parent without the disabled child doesn’t have those additional costs.

Because the concept of mothers having needs is a massive societal taboo. Look at the COVID lockdown- suddenly all kids needed home educating, which was catastrophic for the careers of - yes, mostly- women. Does anyone recall this being addressed by any politicians, at all?

For our society to function the way it does, with sky high housing prices and the needs of children prioritised in a way they never have been before (I'm not saying this is bad), yet with state funding cut to provide support for those needs, something has to give. And that "something" is the lives and happiness of mothers. But because women have- theoretically- achieved equality, it must never be spoken about, because it gives the lie to that myth. Meanwhile, mothers are kept in line with industrial quantities of mum guilt (you just have to look at some of the other threads on MN to see that in action).

For mothers of NT DC, this is a temporary situation. Get them into school, and you can regain most of your life (just about, often too tired for the fun bits). For mothers of kids with SEN it can be like a lockdown without end.

But society cannot hear your voices *. Because if it acknowledges the unfairness of what you're going through, it will have to acknowledge that things should change.

*I say your voices rather than our because although I'm ND and DS2 is awaiting an assessment for ASD, he's "high functioning " and doing reasonably well at school, bar the regular phone calls from the head and being ostracised by all his classmates' parents. So doing well, comparatively

Absolutely agree OP.

Most people judge, even ND families.
My son was violent until he was 12, whilst families who experienced similar completely got it, most others judged. You see it on MN, in RL.
“Well I taught my child that violence was not acceptable” like I accepted it?

This is what the world is like. Have a difficult home situation for whatever reason, and unless it’s socially acceptable (like an unfortunate illness, very visible disability, bereavement) then more often than not people will fake sympathy whilst laying on the blame and distancing themselves from your poor choices.

So as well as having a difficult life, not being able to work, your marriage falling apart, you’re also isolated from the people in your life who you assume might be on your side.
And if you make decisions for your family, or god forbid for yourself, that your closest people disapprove of, you lose them too. It’s shit. You’re held to far higher standards than parents of NT children.

If you manage to scrape some support in school you’re berated for being a pushy mother, you’re faced with comments about how the intelligent children should have that support because they’re going to be the productive members of society. We get told that it’s hard for every mother, ND or otherwise, and that we’re being dramatic or just plain crap for not coping with stuff that everyone goes through. But everyone does not go through it like that.

And Sen friendly is often used as sort of marketing now when it’s anything but, so it’s difficult sorting out the wheat from the chaff, they might as well not say it half the time. Most Sen friendly schemes won’t do personal care or challenging behaviour.

I agree OP - we are in a much better position than many and it is still tough at times. Sorry if this has already been raised and I've missed it, but it is quite often also the case that the parents of ND dc are ND themselves (we both are), which can make some things easier and others more difficult.

My 3 teen dc are all home educated (they went mainstream primary school but started to struggle a lot more with mental health at secondary - they have various combinations of autism and ADHD) - I had to largely give up work in order to facilitate this (I am self employed, so have been able to continue with a bit). Dh is a very high earner, but he is a sacrificial lamb to our wellbeing, as without his earnings we wouldn't be able to live as we do and he would be much happier with a simpler life.

I have pretty 'severe' ADHD and struggle with the day to day organisation and expectations and am regularly burnt out - dh is too, but he doesn't recognise it, as he has no idea how he is feeling most of the time (he's autistic) and I worry about him too.

My dc do rely on me a lot and resent me working and being away - I am an important part of their routines and therefore my absence from home creates issues (even my bedtime is dictated, as they all have bedtime routines that involve me being in bed reading). Last time I went away for a weekend dd cut all her hair off, so I would come home.

Also, the parent of a non-disabled child doesn't have the same barriers to employment. If they don't work it is usually choice, and not a forced on situation. not remotely comparable.

Yep. I agree. I have two ND children - one more severe than the other, but actually they both require more parenting to an older age than the childen of my peers. I have managed to work part time for the most part, but my work is absolutely dictated by my caring role. My husband works and luckily earns well so as a unit we do OK, but I have minimul pension and my adult life has been shaped by the needs of my ND children.

Looking at the big picture. I have observed my Aunt 'manage' my cousin who needed close supervision whenever awake. A different disability but with many points in common for a family.
If men were more involved then there would be changes. My cousin was finally 'put in a home'. It was better equipped and the staff were all trained. Cousin improved, she was much calmer. It could or should have happened earlier.
The rest of the family were able to relax and live a more normal life. Did not have to lock books away to save them from being torn and scribbled over.
Men/Fathers would not be so easily guilted into keeping the 'normal' show on the road.
My cousin started to help some of the other residents. My flippant remark was "she realises she is no longer automatically the dumbest person in the room" She could live at her pace, not trying to keep up.

There must be an argument for more specialised residential care. The present costs are too great in terms of:
Pressure on siblings who cope with the every day living.
Difficulties of taking holidays or even breaks of a few hours
Mental health of mother
Loss of career and purpose
If something is not working we have to find another way of doing it. Not do it harder, do more, Do it faster.

If I have this wrong, I'm sure you will tell me.

Yes most families we know with ND children have at least one parent not working tbh.

We have two DS with severe learning disabilities. At the moment we both work part time so we can do the school runs between us- no childcare available that is suitable. We are lucky that my school (I'm a teacher) has made a timetable change to allow me to do one short day a week. My DH has his own business so he does two short days a week.

It is really hard though. I don't think a lot of parents who can use wrap around care, grandparent care etc realise how little is available to us.

Yes absolutely! My daughter is classed as medically complex with severe sen so is tube fed and double incontinent and although 8 is mentally 3, however she has zero behavioural issues and a very happy flappy temperament she's actually a delight she would just sit with her ipad and play or would get absolute joy doing an activity aimed at 3 year old but children like her are just written off when it comes to outside childcare.

I completely agree with what you are saying. One of my children has an eating disorder which is highly correlated with neurodiversity (autism, ADHD). It is not just that women are called upon to step up, they are held to blame when they do not immediately collapse their careers to care 24/7 for their children.

even If people want residential now it’s a massive fight that can take years and years, it’s not simply a matter of choice.

In fact things are going in the other direction where they are forcing more and more children with increasing needs into mainstream school with little to no support. I know of children who are doubly incontinent, non verbal, learning difficulties being placed into mainstream when the parents want specialist. The needs are played down by the la to get the child a place but then what happens is the school and child can’t cope so the child ends up out of school whilst they go through the long process of getting specialist.

even kids that might be ok in mainstream the support is diluted so they don’t manage, then it’s such a fight to get ehcp/ adequate support and over that time the child’s needs not being met means things can escalate.

that’s the school side respite through social services is even worse, our la give around an hour a week if needs are sufficiently high to meet their criteria, my son doesn’t have high enough needs to meet the criteria even though he’s in special school in a class of 4 and receives dla. Then people that are lucky enough to get the funding it comes as a direct payment so you have to then try and find someone who will work an hour a week for round about minimum wage.

the idea that people could get their disabled child a residential place at the minute is just laughable

We are the opposite. We have 2 ND children and my DH has taken the main lead in looking after everything whilst I kept working. Now that we both WFH it's easier to switch around but without his sacrifices, life would have been more more complicated

@Overthebow Perhaps local authorities could / should provide and fund wraparound care for children who need it, and it's up to them to ensure appropriate ratios. That would relieve the financial burden on families

Mine are older now (17 and 24). One has ADHD and Tourette’s, one has severe ADHD and has suffered from bouts of poor mental health (absconding in the night, brought home by police, suicide risk assessments)
DH is hopeless, he just cannot cope with the emotional side of raising these 2 lads., it’s been left to me. I don’t think he’s missed a nights sleep over the last few years while I have missed many, driving round looking for DS, driving DS round in the early hours because he felt stressed in the house, not sleeping in case DS left the house.
I’ve worked full time the whole time because I earn quite a lot more than DH.
I wish we could’ve had some financial help for me to stay at home with them, I think they have suffered not having me at home more. The guilt I feel at not being available to them all the time eats me alive and I think it always will.

That would be fantastic but I think it’s a pipe dream as it’s such a massive change from what is provided now and would require a large amount of funds to be invested. At the minute councils can’t even provide school
places for all sen children during the school day which is a legal requirement

I found this to be true when I was in a professional role, in SEN education. I saw families monthly at the very least but never once met with a single father (although one once waved to me from the background on a video call!)

I also now find to be true in my situation, as the mother of a child who sounds quite similar to yours OP, and I see it in the family set ups of all the other mothers who I now meet.

I recently went to an open day for a SEN school and there was only one man there (with his wife). That’s because the men aren’t the ones who have given up or cut back on their own work in order to fight for their DC.

At several points I have worked the equivalent of full time hours and more, when dealing with schools, LA, tribunal, CAMHS etc.

That was before adding actual hours in with DD at home all/most of the time, or driving her to some alternative provisions (often for just a couple of hours at a time).

I set up my own business doing freelance work and I work at 6am before the DC get up, evenings, some weekends.. I feel ‘lucky’ that I was able to do that but it’s an impossible juggle at times and I do sometimes let clients down last minute. It all falls to me to pick up the pieces.

This I agree with.

We might have a specialist school place soon. But, if DD does get a place then there is no wraparound and the school holidays are a lot longer than they are in mainstream schools (an extra 5 weeks per year).

@Morph22010 , Yes I understand what you say. Our family events were a few years back.
Is there anyone campaigning for more residential provision at least for respite. I am not sure if longer term residential would be supported by parents now.
Schools cannot be expected to cope without huge increases of resources. Trained specialist staff would be a necessity to provide proper care.
Breaking point for families or schools cannot be far away.
Have any particular MPs or personalities working at this? Brian Rix worked for Downs Syndrome there is a Baroness Grey-Thomson who works for physically handicapped people. Is it considered part of the general disability 'problem' to be solved in a general way?

You are also missing out the strong genetic link with ND and the likelihood that one or both of the parents are also ND. That can make looking after a ND child, especially if you have different set routines that trigger each other etc, and it can also restrict the type of work the parent could do anyway.

I’ve been diagnosed with both autism and ADHD, as has my eldest child. My middle child is autistic and my youngest is now awaiting an assessment.

I have an autistic son who is now an adult. I don't really fit into your generalisation as I've raised him as a single parent from birth with no involvement from the father, so of course I took on all the domestic and childcare duties. We split up when I was pregnant so not related to DS's autism.

I've never had a career as such as I had him young. His SN meant that it was impossible to work during the primary years. At secondary age he went to a specialist residential placement which would have allowed me to work, but I was still his carer and he would be at home during school holidays, I had no work requirements so I didn't. I am his carer now that he has left school and lives at home. I could work as he copes with being on his own at home, but I am not required to and I keep myself busy, so I don't feel the need to.

Both my kids have ASD and probably ADHD. I worked and was the breadwinner.

I spent every day I could with the kids at weekends and when on leave. I went months without a haircut, never got my nails done or wore makeup. It was horrendous.

Their SAHD died in 2016.

I still work but I now get my hair and nails done and spend time doing my own thing cos they're adults.

I think I might be an exception that proves the rule of the generalised post you made. @GiganticArkReadywithHottub

It will continue to be mostly women giving up work until men/women’s wages are at the same level. Obviously most households will choose for the lower earner to give up work. A lot of women (including me) would choose having more money at the end of the month over having less but continue a fulfilling career.

@GiganticArkReadywithHottub I assure you, you and your children are giving just as much to your village.

I know our family dynamic has given both my sons a reality check of what some families have to navigate. It has given them empathy and communication skills they wouldn't have needed to learn.

It has framed my approach to work (third level education), and opened my eyes to gaps that were in my thinking.

It is very important for all of us to know that everyone benefits from engaging. And we will never ever have the skills and knowledge of their primary care giver but we are decent enough rookies 😉