How do you work with your autistic/sen kid(s)?

[Newsenmum]

I’m due to return to work when my baby turns 1. I’ll actually be looking for something new as had to leave a previous job behind. My four year old is autistic and we have had many struggles. He starts school soon and I am envisioning a whole new lifetime of support needed. I get burnt out very easily with the kids (and have some nd traits of my own). Dh is autistic and wonderful at what he does. He is the clear breadwinner and his job is his fixation so he is very good at what he does. I took some time out of work with my first child, partly due to him not coping in childcare and us navigating his diagnosis.

I am now wondering how I’m going to return to work. I mean practically - what is going to be that flexible? And also mentally, what can I cope with? I know mumsnet is very ‘anti’ SAHM and quite degrading of them really, so I feel guilty even contemplating that choice, even though I suppose it’s what I am now. We can cope financially without me working although it would be better if I did work and of course it would give me a ‘break’!

I just wonder if any of you mumsnetters can share what kind of work you do and how on earth you manage it with you ND child, particularly if they have reduced timetables at school, have frequent burnout/school refusal and can’t attend clubs during school holidays?

And just to add I am actually not anti SAHM, I think it is a wonderful and admirable choice. It gives little thanks and it is something I may continue for a little longer if I don’t go insane first!

I ended up giving up work, not very helpful to you. Wraparound care was a disaster for us and an initial "I'll take a break until we get through this difficult period" has ended up pretty much permanent. We don't need my salary, if we did I'd probably look for evening or weekend work, which wouldn't be in my profession but it would be something. Friends have said "couldn't you just get a nanny" but that's easier said than done and we don't have any family nearby who can help.

Summer holidays are always the big stumbling block I find. My DS cannot do group childcare and there isn't much available for autistic kids in our area anyway. The few things that do run tend to be the odd day of an inclusive sports group that isn't a full day and he would hate anyway.

If you do stay off work, be prepared for a lot of advice from people who don't understand the reality at all. "Can you not just go freelance?" is the one I get regularly.

For many years I was unable to work during to DC’s needs. I now work very part time TTO in a flexible job for an organisation who supports parents/carers of disabled DC.

I like to think that MN is pro 'whatever works for each family or person', I haven't thought of it as hostile to SAHPs but I also don't really explore that part of MN. Sorry that that has been your experience and I hope you feel welcome in this part of it!

Try not to preempt that it will definitely be difficult. Hope for the best and plan for the worst, sort of thing. Being aware of ASC at this age is a huge advantage, as you can put time into finding the right setting and building a good relationship with the school. Giving DS lots of down time, low expectations, low stimulation outside of school will help. If you want to work but it's not vital for family finances, maybe give yourself time to see how the transition is. If you have to work, and without knowing what you do, finding something 100% WFH and flexible in terms of timing will be the golden ticket.

DD9 is ASC and we suffered significant school refusal from day 1, to the point where I had two extended leaves from work (self-employed) and now DH has given up work fully (also not helpful for you...). In the early days we also struggled hugely with wraparound care, we had an au pair for a couple of years, which was amazing and surprisingly good value, but our house is way too small for that so we tried afterschool nannies which were a) expensive and b) sometimes unreliable.

also to get out the house when I was WFH, I found a brilliant co-working space. So when I could actually leave - ie, mornings went well, both kids were in, I wasn't existentially broken - I would put on my 'outside the house' clothes, go see other adults and feel very human again.

This is actually helpful thanks. What kind of profession did you have before? It’s so hard and I can see why you’ve not been able to go back. Do you think you’ve found a balance in life? I have days where I feel very down and ‘trapped’ by the idea of not working.

Great idea. Any idea of what kind of jobs you can do wfh? Seem like gold dust!

That depends on your industry I think. What has your career been so far?

Not what you want to hear, but I’m freelance and WFH. My DH also works from home.

For the holidays and after school, we have a wonderful team of (largely) late-diagnosed autistic women in their late teens/early twenties who do after-school pickup and nannying alongside their degrees/volunteering/courses, etc. We also get help from grandparents and, if my mum didn’t live with me part-time, I’d also look for an au pair to help out.

If your DH is also autistic, it sounds like your DC is autistic without intellectual disability. Autistic babysitters are superb for neurodivergent kiddos without other co-associated issues as they don’t charge the rates of SEN professionals, but they have lots of autism experience from autistic siblings, and get on brilliantly with our autistic kiddos too. They also tend to just take our DCs ‘just as they are’ instead of medicalising them, while - at the same time - knowing exactly how to deal with autism-specific situations like meltdowns or sensory overload.

School refusal isn’t a certainty either. My DS7’s school is absolutely super with him. He has loads of adaptations for his autism (inc. an EHCP for an 1-to-1) and reports quite liking school despite not really learning anything! If that’s not happening for you, you may wish to look into other schools - reduced timetable is an illegal exclusion, not ‘the standard’ for neurodivergent kids.

Just to note too, it does get easier with neurodivergent kiddos (without an intellectual disability) as they adapt with age. Our DS7 has gone from being excluded from a private pre-school, aged 4, to giving a speech in class assembly this summer. Before he started school, we were in absolute despair thinking he’d end up being home schooled or EOTAS. We’ve had some wobbles, and senior school is still to come, but it is genuinely okay (and we’re now mostly worrying about his highly neurodivergent little brother, DS4) :)

Ooops, should mention that he’s ’not really learning anything’ because he’s super-bright and working ahead of age. He is learning in his weakness areas, e.g. writing and art.

It sometimes gets easier for some kids! No intellectual disabilities here but it's not got much easier. Depends very much on individual kids.

It does depend on the kids, but I wanted to give a positive view because when I was in the OP’s position, I was terrified because literally everything I read online was doom and gloom. Nothing but school refusal, MH issues, followed by home schooling/EOTAS, plus having to fight constantly for any recognition of needs (esp. if your DCs are smart).

That hasn’t been our experience at all (so far, cross fingers). Only this morning, I spent about 10 minutes frantically apologising to the council’s OT for bringing my bright, healthy, verbal DS4 for an assessment I never expected to get due to council budgets. He was totally fine and gave us loads of super-useful advice on helping our super-fidgety, hypermobile autistic DS for when he starts school!

I agree with @UnendingSaga, it very much depends on the individual child. It gets easier with some. For some, it gets harder. For others, the difficulties and support needed change rather than it getting easier/harder. Especially when puberty hits.

I have not had paid work since having children either. I make sure I get social contact and do things that are meaningful/intellectually stimulating during school hours though. It’s not what I would have chosen but given our situation we are lucky to be to afford the additional stability and reduction in stress that only having one working parent gives us.

I often hear of people working condensed hours, but I work stretched hours. I work 3 days over 5, with flexibility to have some longer a shorter days within the week depending on my DD's needs. It means I can take her to appointments and go to school when they call. It can sometimes seem like terrible pay for what feels like a full time job, but I know I am lucky to have it. And I'd probably work for free if I had to, because it's the one place where I am seen as me and I feel half competent.

Following, as I’m in a similar situation, though I’ve had 10 years out of work already. DH on six figure salary, so we don’t need the money as can live comfortably on his wage, but I worry about pensions etc, and would like to do something for “me” if that makes sense. Little one had a meltdown this morn in the car, kicking and pulling my hair, and I can’t imagine going into an office environment after that and having to act “normal”.

No help, sorry, just sympathy 💐

I can totally understand that

Hi there's a good page on Facebook called the working from home hub. Posts lots of jobs that are fully remote or mainly remote working.
Also thank you @Londonwriter for offering your more positive experience. Since my DD had her first developmental paeds appmt and they confirmed they suspected ASD and would put her on diagnosis pathway I have read only about the awful experiences people have with professionals, schooling, their child's mental health etc. I am so anxious about what the future looks like for my 6 year old. And frequently feel like such an inadequate parent and very disconnected from her and often very frustrated by her behaviours. It is nice to read something a bit hopeful.

@Changingnameagain our daughter made it through primary successfully and is about to go to secondary (with an EHCP).

I won't pretend it's been easy or cheap but DH and I have managed to hang onto our jobs (lecturer and teacher) and marriage somehow.

DH's bosses in particular were really kind and flexible. And some friends have been fantastic when we've been in tight spots.

We only manage because we have family childcare. I work part time and have set shifts so my mum and sister in law take turns to drop off/pick up from school. My partner takes one of my work days as his day off and we alternate our annual leave to cover as much of the holidays as possible. Mum and sil cover the rest.

My daughter has no intellectual difficulties but her behaviour can be quite volatile in an unfamiliar environment so holiday and after school clubs are a no go. Fortunately she still quite likes school but who knows if that will continue.

My work are good at giving me time off for appointments etc.

I'm a qualified teacher and have worked as a supply teacher for 4 years now. My 9 years old son is autistic and my daughter is 5. This is the only way I can manage the sick days, the school holiday , my stress and my exhaustion levels and the different logistics of our household.
I'm forever broke (not earning money during the holiday)so my husband is the one who keeps a roof over our heads.

Hello,

Well my son always struggled with learning. In addition he struggled a little bit with school refusal but it blew up out of all proportion when in Y1 we had the first Covid lockdown. After that we were on a one way street to finding out he had ASC/ADHD/Dyslexia and a couple of eyesight issues - query over dyspraxia too. His school avoidance & anxiety is bad, despite a change to a much more holistic and nurturing MS primary. We are looking at a specialist setting for secondary (currently just finishing Y5).

From when he was a baby up until two years ago (when he was eight) I just about managed to work 3/4 days a week, term time as a teacher. Two years ago we had reached breaking point; he didn't cope with wrap around care, he didn't cope with school drop offs and I couldn't cope with the burden of it all. We tried a Nanny-took forever for him to accept her - she was wonderful, with us a year and he was never comfortable with her even though she was able to bond with my youngest, myself and my husband really well - a lovely addition to our family. Eventually, I conceded and I gave up work.

Since then, I have got him an EHCP (parental application, approved first time - proud of that!), tried (and am still trying) to get my head around all the EHCP/LA processes now we are 'in the system'. I've applied for his DLA and he has been awarded higher rate care and lower rate mobility. I have done a free Level 2 Qualification in 'Understanding Autism'. I have many appointments to take him to (OT assessment, dental issues with autism specialty care, S&LT assessment which has evolved into S&LT sessions in school, we did a stint of going to a dyslexia specialist.....off the top of my head). I have counselling fortnightly, specifically for parents with children who have SEND - it's a lifeline. I've been able to attend support groups, some good, some less so. We've had some really tough times, we are being allocated an Early Help support worker as both of my children are ND and some things reached a head in the last few months.

It's absolutely been the right thing for us to do. 100%. My husband earns more than I did and we moved areas two years ago and live in a more modestly priced house but with more space in a cheaper but still pleasant area.

That's not to say I don't feel sad some days that I don't get the external validation from my career anymore. I am wistful when I see past colleagues getting promotions etc on LinkedIn. I often miss that feeling of 'freedom' just driving away from the house and going to my job. But there are lots of things I don't miss too, like the stress. I'm a much calmer, more observant and compassionate parent without the burden of work on my shoulders-still have some terrible parent moments still though, I'm not a saint by any stretch. My son has been able to unmask somewhat now he is less of a square peg in a round hole which is wonderful. I've been hit and miss at finding new ways to spend my time; ultimately I want to train in a new, education based role and have had a bit of a false start at that recently but aiming to have another crack at it in the next 3 to 6 months. I have picked up some tutoring in school time, term time hours that work flexibly with my children's needs. I have done a bit of volunteering in different roles, some I've enjoyed more than others. I know I want to do a bit more exercise and a bit more creative stuff and I'm not good at motivating myself to do those things....It's a work in progress. But for now, it's what our family unit needs and we are just doing our best with what we know to be best at this given moment.

I'd suggest going back to your job, seeing how it goes, having a Plan A, B & C, a lot of flexibility and a willingness to revaluate once you find out how your child takes to the school experience.

To answer your other questions, my son has never needed to do a holiday club as my teaching holidays aligned with his school holidays-although I wasn't working though I could have done with the breather and the time to plan for the following academic year - cue one burnt out teacher/mum. I did get him in to the sum total of 3 holiday camp days one year but it was such an ordeal that I didn't do it again....he was so upset and dysregulated by it. Similarly, wrap around club never really worked out for us, he never knew when he was meant to be going (time blindness around days of the week-still an issue now) and found it frightening some of the time. Morning drop offs are a huge pinch point for us. I don't tend to leave the school site until 9.15 am (on a good day) and on bad days, 10am. The morning drop off is supported by a TA and done a therapeutically as we know how; it's still a challenge. Sometimes I keep him home as he is just too anxious to attend (happened on two days this summer term - for reference).

Well done on having such clear foresight for what your child may need from you in the future. It won't necessarily be easy (if you are like us, it may be terribly difficult at times) but there will be amazing, happy, 100% good moments as well.

@HairyMopkins I just wanted to acknowledge your post and to say I can see how much effort you have put in and how many things you have tried.

Thank you @Phineyj that is very kind.

Yes I have tried quite a bit. I know that I could take the resilience and drive I had for my teaching career and apply it to fighting for my child's needs full time, at least for a while. I also acknowledge we are fortunate to have my husband's income to live off with a bit of belt tightening and change of habits.

I would be struggling hugely if I was single or we were both having to head out to work full time and have the utmost respect and considerable awe for those individuals/couples who do that.

Hi op. My dd is 12, suspected asd and / or inattentive adhd (diagnoses still pending), and has been a school refuser since 2020 which started on and off but escalated consistently until she stopped going to school completely last year. Thankfully I work from home almost exclusively but I.didn't always and I if I wasn't now in a fully remote working pattern there's no way I'd be able to do my job. If we'd had the foresight that we'd end up here I'd have definitely thought long ago about having a nanny who the dcs would then have built up trust with over the years. As things stand, dd will not be without me in the house for sustained periods of time. Honestly even wfh is sometimes a disaster. If she melts down and I'm due on a meeting it is incredibly stressful. Last year I had no choice but to do a very sensitive meeting with dd on the other side of the room in a meltdown. A few weeks back I told her too late i was due to interview someone (hence needing to leave her alone for a while in her room) and I had an iPad launched at my head as I was going into my office to log in to the interview. She carried on chucking items in the general direction of my office for the whole interview. I don't have any answers but as I say, with hindsight, I wish we had other adults she would trust to stay with.