If you have a child with autism ...

[Burritobowl84]

Do you work?

We’re currently in the process of having our son assessed for autism. I work full time, and I love my job, plus we’d be f**ked financially if I gave up work. DH’s parents have been our main source of childcare since I went back to work last year, me and DH both WFH, I work 9-5, the husband 8 -4, so the grandparents have him in the morning, they live just down the road so they bring him home in the afternoon, then me and OH alternate lunch breaks/coffee breaks in the afternoon to spend time with LO work around his afternoon nap time, and he is never ever left to play by himself and always has one on one attention from either myself, my husband or the grandparents, it’s a bit of a juggling act sometimes but it works for us. However we’re very aware this arrangement won’t work forever, the grandparents have been dropping hints that they’re looking to stop having him soon, plus we know he won’t reliably have an afternoon nap forever. The good news is our son starts his preschool year next year, and we’ve been offered a nursery place for him after his third birthday in 6 months time, but we’re not sure how he’d cope in a mainstream preschool/nursery. We are having our son seen by a specialist privately in December (something we would have 0 chance of affording if I didn’t work), as the process with the NHS is so lengthy and we want an official diagnosis ASAP so we can get the ball rolling with perhaps getting him a place at a nursery unit within a special school if needed.

Lots of my friends and relatives seem to think I’m nuts and even selfish for intending to carry on working at all if my son is diagnosed, & either myself or my husband should give up working completely to care for our son full time. Do they have a point?

I don't work. DS is 7 and has a diagnosis of 'moderate' autism. He goes to special school, is high needs and has a lot of intervention. I also have a 3yo DD. We live close enough to DS's school that he doesn't qualify for transport, but it's not safe to walk him the mile distance, so I drive him. That's every day 8.45-9.30. Then 2.45-3.30. (There's a lot of waiting around in the car park and the gates, as they stagger all the kids coming out due to covid). There aren't any childminders in a ten miles radius who take kids with SEN. I know this as myself and my friends in similar situations have all enquired.

The main reason I can't work though is that DH has a high earning job in the arts and often has to be able to work at the drop of a hat, so even though he does help with the school runs etc he isn't available to for at least half the week, and he often doesn't know on Monday exactly where and when he will be required to work. We have no family nearby, and tbh I don't think they can handle DS now he's bigger and stronger.

So I'm the carer. DS gets Disability Living Allowance and I get Carers Allowance, which I use to run a reliable car.

I work but had to reduce my hours to 3 days a week and take a lower hourly rate to do a more junior job. Thankfully work are very good with flexibility otherwise I would be screwed. It is bloomin hard going most of the time, even though grandparents help out as much as they can. DS is in school now but holiday childcare is a fortune (24 an hour for someone from an agency to look after him in the home) and not suitable for DS anyway.

I stopped working before I suspected autism in DS1. Teaching was not flexible. DH had a year of lots of working away. We have no other support. Life felt very stretched thin and at that point DS1 was in yR (and not happy with wrap around care) and DS2 in nursery. I took a natural break in contracts intending to resume work when DS2 was in school/ same childcare... that was 5 years ago.

It would not be impossible for me to work, we fall into that middle ground where it's not essential but it raises plenty of logistical issues and we're comfortable enough for me not to have to. DS gets on well in a mainstream school and has few appointments. Our main issue is that at the end of the day he can go home and chill and defuse. I hope that when (if?) he's settled in secondary, I'll be able to resume casual supply as childcare and holidays won't be an issue at that point.

There's no right or wrong and it depends very much on the package of needs, support and circumstances of the family, work and education.

If continuing in work works for you, keep going.

I have 4 autistic children ( with other complex diagnoses) and both myself and DH are currently not working. 3 are in specialist provisions that need seeing on / off transport, can’t access “ normal” childcare as two require 2:1 care and one 1:1, one barely sleeps despite medication so we average 4-5hrs max a night with constant supervision during awake times, a relentless stream of medical / educational appointments consume most of my week as well as caring duties. We have no family support at all. We were home-Ed during covid despite EHCP children being allowed in due to another medical issue -
and then also since Dec due to no placements able to meet needs and now they are all finally back in placements I’ve realised just how traumatised dh and I are from the recent events. I think I’ve been running on adrenaline. I am also autistic and have ME and am trying to preserve my Physical and Mental health to enable me to manage DC needs the best I can.

To stop myself feeling guilty about the frequent “ ooooh SAHM / lady of leisure” comments I do volunteer my time a lot in helping other SEN parents with EHCPS and educational difficulties to hopefully make their lives run a little smoother!

I do now but I was a sahm until she was 12. She's in mainstream school but would never have coped with wrap around care or holiday clubs, and we don't have any family locally.

Every child with autism is so different. I work part-time so I have flexibility. My DD’s needs aren’t that high. She really just has spells where she needs extra support for her anxiety. Early on there was some extra time for testing and meeting with the school to get her a more challenging academic curriculum, but now that is all in place and she is a teenager, my part-time status is more habit than necessity. If it weren’t for the unpredictability Covid introduced to the equation, I would have given it up already.

I am not sure why someone suggested reducing your hours to claim DLA as it isnt means tested. You could apply and then consider if that makes enough difference to be able to reduce them.

My son is 8 and I get carers allowance for him. Our youngest has just started school and we planned for me to get a part time job, but we are just about managing as we are. To be honest, it's a full time job caring for three young dc when one has asd. He wakes constantly through the night (despite melatonin) and functioning on very little broken sleep is so hard. Plus dh works long hours so I'm basically managing it all but myself.
I would love a little job just to have some contact with the outside work and be something other than just a mum for a while. I am thinking of volunteering at school but I don't know if that would be a busmans holiday!

I work almost full time. My ds is in a mainstream primary but requires lots of support. He can't manage holiday clubs or after school club so we have been reliant on nannies or sympathetic childminders. Childcare costs a bomb. Medical appointments haven't been too much of an issue, we got a private diagnosis and at that point the NHS took us off the waiting list and sent us some leaflets. No support or therapy.... Fortunately his school is more helpful! My employer is very flexible and I can wfh which makes juggling meetings with school etc easier. I am well aware that if he struggles more at secondary school I might need to give up my job. However, for the minute I enjoy my job and I plan to continue working while I can. If you are happy working I wouldn't worry too much about it for the mo. If things get tricky then you can make a decision then. FWIW my Ds had absolutely no problems in nursery and loved it, so you could find this stage isn't too tricky.

4dc, one with asd and yes I work full time (funnily enough supporting people with asd). We only get lrc so not entitled to carers allowance.
I’d like ds to not use his diagnosis as an excuse of not being able to work when he’s an adult, so I won’t use it either but obviously each family is different and you have to do what’s best for your family

Yes, I’m a single parent so have to keep a roof over our heads. My career hasn’t progressed at the rate others might and I’ve worked a mix of FT, PT and freelance over the years.

My DS is at the higher functioning end but the teen years and lockdown have been very hard on all of us.

I’d like ds to not use his diagnosis as an excuse of not being able to work when he’s an adult, so I won’t use it either but obviously each family is different and you have to do what’s best for your family

For someone who works with autistic people you seem to be spectacularly missing some knowledge of the subject.

I have two with autism - I work 30 hours, DH works FT. Both buys currently in mainstream but younger will need specialist setting soon.

It all very much depends on your child’s profile.

Both of mine are quite calm in nature, happy with disrupted routines and generally are compliant.

I suspect it will be one more difficult as the older hits high school but for now I can manage.

If I went FT then I’d need a nanny for consistency I think.

I’d like ds to not use his diagnosis as an excuse of not being able to work when he’s an adult, so I won’t use it either but obviously each family is different and you have to do what’s best for your family

What job do you think a non-toilet trained adult with no speech and the inability to follow basic instructions can do?

I’d like ds to not use his diagnosis as an excuse

Not an excuse but can be a reason.

I work full-time, and have a DC who was diagnosed with autism when when she was 2. She's been a a private mainstream nursery since she was 1, who have been amazing with her.

DD is now 4, and will likely go to a special school for reception from next year. I'm moving to a house on the same road, so I should be able to walk her there (very slowly as she struggles a bit with her mobility).

I wouldn't be able to give up my job even if I wanted to, as due to being a single parent, I wouldn't be able to pay the mortgage or bills without it. I'm about to recruit a live-in nanny to help, but my parents have been my main back up for years anyway as I live locally to them. It really helps if you have support. My EXDP did the bare minimum, hence one of the many reasons he is an EX.

It all depends on how your son copes and what extra support you need. For example my DD needed speech therapy every week and l only worked mornings so was able to commit to it which would be tricky if I worked full time.
With him attending nursery it might take him a while to adjust. Please don't see this as a criticism but if he's used to complete 1:1 it might take a while to adjust. That doesn't mean he can't cope with mainstream nursery though.
It's nothing to do with your family and friends if you keep working full-time though. It might be something you have to consider at some point but not now and not their place to give an opinion.
By the way do they think your DH is also selfish for working full time? Thought not.

I work part time, 5 days a week but with lots of flexibility. I'm about to turn down a very much wanted job as I'm having to home school my DC and a new job wouldn't work around all the different arrangements.
I intend to get my DC settled into an appropriate school when we find one and hope that my dream job crops up again.
I've worked the whole 15 years I've been a mum and it helped keep a roof over our heads when I was a single mum.
You do whatever works for your family, based on your DCs needs and your own.

Yes. 2 autistic DC, both now at secondary.
I worked part time when they were very little and am not completely full time now, but stayed employed throughout.
Having an understanding boss helped when things were particularly tough a few years ago.
Having an identity that isn't just 'mum' helps me cope better.

I work full time always have and I have a child with autism diagnosis. It helps that dh works shifts that fit in around dc and dgp help plus I have a sympathetic employer. It’s doe able lots, do it I know plenty of parents of sen children that work full time and plenty that don’t . It’s whatever works for you .

I should also mention I have a sympathetic and supportive employer too which I literally couldn’t put a value on.

It will completely depend on your child’s needs, as I’m sure you know every autistic child is different.
Initially i struggled to work full time, due to an unsympathetic employer and knowing my DS wasn’t in the correct school.
My ds is now in a special school and I now work full time as a teacher so more family friendly hours.
By working you will get a life separate to whatever is happening at home, which I felt I needed. However it has to be the right job otherwise you’ll end up with stress at home and work.

I work 4 days a week and am a single parent. I would LOVE to be able to progress in a career but don't think it's possible when part time. However, certainly at the moment while my DC are still young I can't go full time. I couldn't put her in before and after school club every day as it would be too much for her, I wouldn't be able to take her to her group, I wouldn't have flexibility for appointments and meetings and to be quite honest my mental health would be destroyed without the respite on my day off.

As pp have said, every family is different. No one should be telling you that you should give up work due to a diagnosis. Tell them to get stuffed.

Having said that, I have up work while my ds was in mainstream. Couldn't have worked while he was in the SEN unit due to the hours he was in school.

He's now Home Ed so I don't work.

I worked full time until I had to balance 3 of them with various medical issues then went pt. I know several parents who have excellent childminders or nannys who care for their autistic dc.