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 have just had to leave my job because of my lo care needs. Saying that, my job had quite antisocial hours (evening and weekend) which are harder to accommodate with childcare. I was very fortunate with daycare facility, they were great and went above and beyond. It's really hard for anyone to advise you what to do, you are certainly not selfish to want to work and if your D's is happy in his environment it can work really well, but it really is a waiting game to see how your child will cope. Like another poster stated, take a day at a time..

Yes. I had to keep working for my sanity and although it was tough in the early years, and I don't doubt I was judged, not least by my inlaws, it was the best decision I made.

And while I didn't earn much after childcare for a long time, I am now doing pretty well, and the money I make helped us pay for a lawyer to fight and get our child into a fabulous school.

Do what YOU want and do not allow others' opinions to colour your decision.

Good luck.

I have 2 autistic children and I worked full time opposite shifts to DH for years. We used nursery, breakfast clubs and after school clubs where needed but the majority of the time if I was early shift he took them to school/nursery and I was able to collect. They are not my only children and it was a tricky balancing act that I often question now because it wasn't worth it. I don't work just now but I'm also autistic and genuinely burnt out by keeping things together for so long. I only have one ASD kid in school now, the other is in university (living at home) and NT DC working full time. Do what's best for you and your child snd remember whatever decision you make isn't permanent- it's fine to try one thing, then another and decide what works best.

Yes, but my DS has an Asperger's/High Functioning diagnosis, and generally bobs along in life quite happily. He was diagnosed around Y2, and he's now in Y10, and I've worked throughout. He's not needed any additional appointments or therapy, however (save the occasional additional meeting with the SENCo at school - but he doesn't really receive any additional help at school). He's always been in mainstream school (well he's in a private secondary, but that's not necessarily because of his diagnosis).

I just think you have to see what your child needs from you, the only person who will know that is you.

We have 2 autistic DC & both work full time.

We have some family help in the week, but that just means we’re either working or caring for the DC. A fair amount of annual leave is taken up by appointments, but we do still manage to get some meaningful time together a couple of times a year.

It’s hard, but we’d struggle on one wage, so we’ll both cling to our jobs as best we can. I’d love to go part time, or even drop a day but just don’t think it’s feasible financially 😣

Realistically, it’s possible for us & I’ve always worked so it works for Dc. Also been with my employers for years so I have some degree of leniency provided I try to keep it to a minimum.

My friends daughter is autistic and is fairly non verbal and goes to a specialist school. She will never be able to live independently or have a job or anything like that.
Her mother works part time. The school is all year round with a week off at Christmas and in the summer. She also has a live in au pair. No father or grandparents (deceased) just her.
Someone she knows through the school has two sons with autism again severe. She works but has paid for care.
You work for money but also for a sense of self worth, mental health and a way to occupy your mind separate to your child. Unless a person has a child with certain needs they have no right to comment.

I had to work when my son was diagnosed I was a single parent. I did 16hrs topped up by tax credits for years. I had to have family help and Nursery. It was incredibly hard leaving him as he had huge separation anxiety. But it had to be done to put food on the the table and pay for things. He went to a mainstream school for all of his education. Again not easy he did have a statement so had 21 hours support but it has never been an easy ride for him. He is now in a special needs college. Ultimately you do what you need to for your family circumstances but if one of you doesnt need to work FT hours you may have to consider it in future. I cant tell you how many hospital appointments and referrals for different therapies we have had over the years. FT work would have been very hard.

I don't because I can't. I'm a single parent, DS goes to a special school but has just had to go back down to 1hr per day only because he can't cope. He can be aggressive and I couldn't leave him with anyone else or alone with my other children for anyone's safety. I really wish I could work, even part time, for my own sanity but ds is so unpredictable I would be a totally unreliable employee even if I could find anything that fit within the limited time I have available.

As others have said, it largely depends on your child’s needs and what help you get. Both DH and I work full time. Our 7yo has autism and is in mainstream with wrap around care, and can attend holiday clubs. As he gets older though, it’s becoming more apparent that he masks heavily and it does take a toll on him. We are debating the possibility of me getting a more flexible wfh role - difficult because I’m the main breadwinner, working in the nhs in a pretty niche specialism so this would require a fair bit of planning to make it work. As he’s getting older though, his DGM is having him a bit more in the holidays and after school as he’s less of a liability (for want of a better term! He’s much less likely to run off and get himself run over!)

A felixible and understanding employer is definitely an advantage, particularly during diagnosis when the appointments really rack up. Now we see his paediatrician twice a year, so not much of an issue there. I’d suggest keeping an open mind, don’t rule anything out but equally don’t be quick to pack in work unless it’s right for you, no matter what others say. In my experience folk are quick to judge you, particularly when you’re a parent to a child with Sen, but provide little in the way of actual help and advice so feel free to ignore them!

My son is 3 in January. He is autistic. I look after him every day and work when he sleeps and evenings. I'm lucky I have my own business. It's really hard but my son can't cope with a full time child care setting even working up to small amounts is a challenge . Plus all the appointments we have a week. It would be impossible to work full time for us.

It's very difficult 💐

I have a dc with autism and severe learning difficulties, he is 14 now and has attended special school since he was 3. Before and after school childcare doesn't exist and as for school holidays..............
DS gets 3 hours a week at a special needs activity run by the council.
I don't work, I do all of the school runs, medical appointments, school meetings, holiday childcare and sick-days. There are very few families in his school where both parents manage to cope with both working. full time.

My eldest has autism and ADHD. He is verbal and in mainstream school. He has a lot of support in school and generally does well but there is no holiday club provisions that can cope with him so I work one day a week at weekends. I refuse to give up working totally as it keeps my skills up plus gives me confidence. My son's ADHD causes far more behaviour difficulties than his autism though. Wether you can work will depend largely on your child's needs, your employers flexibility and your ability to get childcare. Although if grandparents are already looking to not provide childcare (or even as much) you might want to factor that into your decision. Also a factor to consider is private diagnosis are rarely given the same credence as NHS ones and regardless of diagnosis your child should get support based on there needs rather than diagnosis in the UK.

I don't at the moment but I have previously. Dd had an autistic burnout, was out of school for two years, I couldn't work when she needed watching round the clock. I'm now a single parent and that puts even more barriers in the way as I also have adult ds with autism who I can't leave for any length of time to care for as well. It's really very difficult tbh was easier when they were primary aged and I could use after school clubs but that stops once they hit secondary age and then what do you do if you still need childcare?

I think you need to assess it a step and stage at a time. Eg going to nursery and you evaluate his needs, then it will change when he starts school.

I am divorced the dc do not stay over at their dads but see him. I work part time and that is a struggle.

One of my dc has asd. Teenager now so though but to be honest is more hard work than when she was pre school and currently has loads of issues.

At the end of the day it is what you can cope with. If you have to cut your hours to manage that, then its something you need to consider.

Your main issues are time off appointments and childcare. If he can’t access or cope with normal wrap around options you will struggle to be full time unless DH part time/grandparents.
School holidays - 13 weeks. Impossible to cover if he can’t access or cope with usual childcare. Or if he can’t be left alone beyond age 11 when most childcare stops.
There’s the normal childhood stuff - sick days, dentists to juggle and all the disability stuff on top.
All you can do is try. Pinch points are starting nursery, starting school, starting secondary- lots more meetings etc and risk child won’t cope.

I can't vote one way or the other. All children are different and all parents are different,

I have ADHD and parenting n autistic child who also has ADHD was exhausting for me. Even then I stayed in work foras long as possible because leaving work to rely on benefits felt wrong.

Eventually that's exactly what it came to.

By the time DS reached Y6 I wasn't able to cope with work .

Initially I hoped it would be a short term thing butnit hasn't been. DS is 18 now and has complex needs which take a lot of my time emotionally. The thought of dealing with all that and work is horrendous.

I don't work. There is no childcare for ds ( now a teenager) and even working opposite hours wouldn't have worked past age 8 or 9 because he often needs 2:1 care. A family member who has a child with autism works 2 or 3 nights a week in a professional role but survives on very little sleep or no sleep on those days.

No I don't work I had to give up my career when both of my children were becoming harmed by unmet needs at school. The local authority has accepted that there are no schools that can meet need so I have to be at home to facilitate their educations.

I would carry on working if you can. My mental health suffers due to the fact that I have had to sacrifice my career to educate them.

Haven’t read whole thread but are you receiving any DLA?
My DS is autistic and I was able to reduce my work hours as we then qualified for DLA payments, I then reduced my hours further so that I could receive carers allowance. It’s made things a lot more manageable.

Yes I work. When DS was diagnosed DH worked for himself and he used that flexibility to do a lot of parenting courses and therapies with our DS and I work term tome only so it has worked out for us. I would say it requires a deal of flexibility at the start.

I don't work.

Dh works offshore, my in laws can't help and my parents don't want to so it's up to me for 6 months of the year.

Depends what brand of child you get tbh.

I've never been able to work, it was impossible. We have no family support and ds was too severe for childcare. He also needed a lot of me and what I could give.

But I know families who have easier to manage dc that have managed to successfully stay in the working loop. They usually have good family support to cover holidays etc too tho. Because that just isnt geared up for a lot of Autistic dc, often from a safety aspect alone.

I don't have a child with autism myself, but I have some friends who do. It's a mixture - one home educates her DS and doesn't work, another has a child in mainstream school and doesn't work, another has a child in the autism unit of a mainstream school and works full time. There's no single correct answer except that you are definitely not selfish if you carry on working.

Not anymore.
I was let go in March 2020 I had my earnings substituted, then claimed carers.

I was working evenings and weekends, DP working Monday to Saturday for 5 years.

It wasn't sustainable.

DD has autism with a LD she is 12 she is calm introverted and other than anxiety is a great DC.
DS aged 6 has autism no LD but a host of emotional and behavioural issues, he has a mood disorder dmdd.
He needs a lot of support and rigid routine he is thriving since I'm at home.
I plan to return next year when carers benefit runs out.

To add I miss working.