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?

Mine wasn’t a choice. Two dds who are autistic. They really struggled in nursery and couldn’t do anything more than a few hours a day. They’re 11 and 8 now and the youngest is high needs and there’s nothing around that would accept her. If you can work, I would. It’s very easy to get lost and consumed by your child’s Sen. I work part time now and most of it is done at home. My DH has a very busy high level job so it all falls to me. Your son might find mainstream okay. My 11 year only came out of mainstream to move to a specialist secondary.

I think it’s really unfair for anyone to judge you for working. If your son is happy and settle when he goes to nursery and then school I don’t see what the problem is. And actually if you’ve been with your employer a while they might be more flexible when you need it. I’d personally if you can continue working and see how things go.

I would take it one day at a time. Carry on working and see how things go. You might find you need to be more flexible (you and your husband)
Don't make any big decisions yet as you don't know how he is going to be in school. If you have an employer who is understanding and let's you take time off for appointments (as there will be loads) then hold onto them for as long as possible.

It's hard to say as each situation is different.

I had to go part-time.

But my DP works away alot. We have no family nearby.
MY autistic child has other medical issues and we spend a lot of time with various appointments.
My other children needed to know I was here for them.
I was exhausted, becoming mentally unwell and making myself feel a huge failure working full time.

It was right for me and my family but m y career is on pause/over.

My understanding is that a NHS diagnosis is required for accessing support, although more trusts are accepting a private diagnosis.

Nope but I have the opposite issue where people think I’m LAZY for NOT working so you can’t win! Difference is I am a lone parent (no ex involved at all) if I had a husband I wouldn’t be seen as lazy 🙄 my daughter is violent and aggressive she can’t attend holiday clubs as she needs 1:1 and I have no one else to have her but yep still lazy

Also, you will need lots of support. You need to talk it through with other similar parents. Believe me, the stress will get to you and make sure you offload to a support system. It is incredibly lonely, always reach out when you can and when you find a good professional, talk to them! They are like gold dust

DS was diagnosed two months before his 4th birthday. I was between contracts then but went back to work as soon as I secured a new position. He is now 12 and I work full time. DS went to mainstream preschool and mainstream primary and then I paid for afterschool care for a few years. No issues and he isn’t the only autistic child who has two working parents.
I wouldn’t make any decisions yet. You don’t know how he will be in school. He could find himself in a place that he flourishes in and might love the routine and rules etc. Some parents of children with autism can both work and others might find one has to give up work.
You definitely shouldn’t be judged for working. children with sen are all different from each other and have vastly different needs as your child gets older you will start to understand more of what he needs.

I would try and stay in work for as long as you can, or start thinking what you job would look like part or flexi time. There is no need to give up if you can afford and can find good, possibly specialist, care. This is will depend on where you live etc. Very wise to get diagnoses underway as soon as you can.. Have you spoken to other nurseries? Some (as with mainstream schools) are better with SEN than others.

Didn’t have a choice due to my sons severe autism. He gets dla and I get carers.
I have no life.
What’s the point being honest when ds is at nursery or school?

I don't.
But that's a decision I took when DS was 9, because I felt he could achieve more academically if he was home educated.
There's no need to rush to give up your job the moment you get a diagnosis. Take each day at a time and do what works best for you and your family.

I dont, but my children are home educated. This was our choice before we even had the children who have SEN, but it works very well for them. I don't think it's a decision you'll be able to make until you know how much help he's going to need, and know how he will cope in a formal setting. He may well thrive, and nothing need change, or it could be the worst thing for him and you'll need to assess everything again. And probably reassess at different stages too. See how it goes, be prepared for change, and be aware of how things are affecting him.

I work full time but my DS is nearly at the end of primary and I have an understanding employer and I WFH even before the pandemic. My DS was in mainstream school and nursery from age 6 months. His difficulties didn’t become too much of a problem until year 3 when he was diagnosed. I have always used private childcare and school though, never relied on family and I think I missed quite a lot of his difficulties because I was always working. Except for two years off between age 3 and 5 when we lived abroad, but he was in full time pre school as this was seen by my husband as ‘better for his behaviour’. I went back to work for my mental well-being and to earn extra cash. Now all my money goes on private therapy and school fees as where we are has very poor provision. Don’t imagine that a diagnosis will give you access to specialist provision. That is a post code lottery and depends on your child’s needs. Good luck and don’t feel guilty, working saved my sanity but I do feel bad and sometimes think I should home school him and stop working. I may need to do that in the future but for now I need to keep my pension payments up as I also need to consider his long term future.

If you can't manage work and caring for child(ren) then it is unreasonable to cling on to a job. If you are managing and other carers remain happy then keep working. Sounds like not all carers are happy and willing to continue the current set up so you need to work out a solution. There are many options to explore.

Our 2nd is waiting on assessment too, they said around 12mth waiting list atm.

I think all you can do is see how it goes and keep on working until it's just not possible (if that time comes). Have you spoken to the nursery about his SN? Are they confident they can cater for his needs? He might cope better with a child minder than a busy nursery though - mine has ASD and it's definitely the route I'd go down. A childminder with only a few children can (hopefully) cater for his specific needs more than a nursery with lots of children to contend with.

My DD is 12 and is autistic with high anxiety and currently not in school. The only way we manage is by me working part time and my DH wfh.

I don't.

I was already a SAHM when DS was diagnosed just before his 3rd birthday. My plan had been to do the preschool years at home and return to work when he started school. But I quickly realised that was never going to happen, as DS needed (and still needs) so much support. No family nearby to help either.

However, I have friends with autistic children who work. Its not so much the diagnosis, but what your individual child's needs are, and the type of support you have around you.

I wouldn't be too quick to give up work. Take it one step at a time and do what works best for your own family.

I was very lucky when DD was younger and found a fantastic childminder with lots of experience with autism. She cost a lot more but it was worth it. I worked 7 to 3 and DH worked 9 to 7 so he would do drop off and I would collect. We ran at a bit of a loss for a few years.

I have 2 dds diagnosed and one waiting assessment. I didn’t work for a v long time (girls took a long time to be diagnosed despite very clear needs). And then the battle for a EHCP. Two have struggled with attendance - even now I have trouble taking the youngest in almost daily. When the youngest went to school, I started volunteering in a school and then went on to be a TA. Crucially, dh started working from home. He left a ‘big’ job in the City, so financially we are secure. A year ago I changed my job and work from home three days a week. Still difficult and dh and I always need to be on our toes in terms of covering each other for work. Complicated by lots of cahms and medical appointments. For my self though, I needed to get back into work.

Don’t worry about what everyone else expects - what do YOU want to do? There is no shame in going part time if needed. I need the downtime without children, as with 4 dc and three most likely with ASD, I need a bit of time out also.

I have two autistic DC aged 6 and 5. I can't work, particularly because of my 6 year old.

I'm 90% sure I'm just seen as the scrounging lazy bum that everyone vilifies.

Luckily DD is on HRCHRM and DS on MRCLRM DLA wise which helps ease the financial pressure substantially.

I do, but for myself and at home, and only part time.

It is a constant juggle though, and I work 7 days a week to keep up my hours.

I WFH, small contracts. It keeps me busy about 75% full time - I can do emergency runs into school, appointments, whatever is needed. I can make up time in the evenings, the next day, mostly whenever suits.

I don't see any reason you couldn't maintain a FT job, IF you have a flexible employer. You're more likely to need time off, emergency pick ups, appointments. If your employer is good with that, then hang onto it.

If your employer isn't flexible, in the long run you might need to give it up. But don't until you have to.

No. But my child has severe autism and learning disabilities he's always been at a, special school, i have to be home to put him on and off school transport, hes eleven but can't be left alone, i was, a nurse but it was just to stressful, autism is a huge spectrum, some people maybe able to, others not depending on how their child is impacted.

Yes, I work hours around husband's day job so I'm available for school phone calls if needed and other appointments. I'd go batshit if I didn't work. It also means I don't have to think about school holidays

You do what's right for you and your family. It doesn't matter what anyone else thinks.

DH works FT. I can't work full-time, only part time. She needs so much supervision and extra help. We have no support from wider family.

I also had a wonderful experience with a childminder, she supported us for 8 years in total part-time (we also did nursery part time which was perfect). It's very important to try and build a bigger support network if you can.

My son has special needs and I work school hours in retail. He gets collected by mini bus and dropped off earlier and later than ms school so it gives me more time .