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?

We have no family around and I am a teacher so stopped working to fit in all the therapy appointments.
We tried mainstream schooling at the beginning but it didn't work out. DC is now in a specialist school, therapies are done in house and I have been back to work for 2 years. Everyone is happy (inc me. As much as I loved being a SAHM, I am happy to have my career back!)

Sorry , re read your post .. don't give up work . You will need it as respite ! My job gives me some me time and a distraction from everything . You WILL find the right school for him eventually whether that be ms with support or sn.

One of my friends has a son with such severe autism I don’t know how she makes up every morning. But she does and does a full days work in a really high level professional job. The money she earns plus the son’s DLA / PIP have allowed him to have experiences they would never otherwise have had as a family.

I have 3 DDs. 2 have ASD. The eldest goes to special school and the middle one goes to mainstream. I had to give up work (nurse) when DD1 was 1½, then returned to work when she was 10, but it didn't work and I had to stop again. I lose my nursing registration this month, but I know that there is no alternative.

I have two neurodiverse children, one with ASD and one with ADHD. I work part-time in a management role, 17.5 hours.
However, both my DCs are in mainstream school and my husband works FT but in a flexible role.
My job is flexible too, so I'm finishing at 3 today to take DS1 to a CAMHS appointment.
If I had to use school transport etc, I'm not sure I could work. My DCs are pretty independent but do need extra help.

I am a SAHM, there is no way I could work as the amount of appointments etc and time that takes for my DD who has Autism amongst other disabilities would not be very favourably looked upon by an employer.

My DD goes to a special school and you have to be there to put them on the taxi at pick up and drop off.
Also they can close the school at any point and send the children home or say a class is shut for a day due to staff shortages.

My DD went to a normal nursery and loved it there, but she did not have a good experience at mainstream school.

Get a diagnosis as soon as possible, then apply for an EHCP, your nursery SENCO will help you with this as this will help them getting extra funding.

Apply for DLA and carers allowance as soon as you get a diagnosis too.

Do not give up your job if you do not have to - try to get some flexibility with your hours.

DD is on the ASD spectrum - HF Asperger Syndrome, along with ADHD. I have always worked, and it was montesori who noticed and pointed out the issues to us (no family support nearby and we just assumed that we had a "harder" DC than some others had, but that it was all relatively normal).

DD is still in mainstream school in secondary, has some support there but not a lot, we've sourced most of the support over the years. She is doing well, not outstanding for her abilities but solid enough, academically. She does a lot of sports which help with the excessive energy and also with being part of a group.

We have always juggled annual and flexi leave for any appointments for her, as well as covering actual illnesses. We've usually had at least 1 understanding boss between us at any one time, and managed to make it work - and both of us have generally done a lot of work in the evenings and at weekends anyway as well to keep on top of everything.

But having the ability to earn money that covered extra costs for DD, and being able to sign her up to clubs and activities to support her, were invaluable. She did a relatively expensive hobby but one which meant she had to learn to communicate with others and which really helped her develop communication skills as well as gave her a great sporting skill and opportunity to attend some really special events.

It also meant that I:
Went out to work everyday, had a commute where I could decompress from home/work and have some quiet time just for me;
Met others who saw me as BiddyPop, not MrsDH or DC'sMammy so I retained my sense of being ME;
Had a chance over lunchtimes and juggling hours for early/late appointments to get my own things done - Dr, dentist, hairdresser, occasional beautician visit, physio, etc, as well as general shopping for my, family or household needs, or things like getting ahead for back to school/christmas/birthdays/upcoming events etc.

And DD learned to deal with other people and not be totally dependent on her routine and on DH and I to cover everything.

I guess the frustrating thing here from all is Mums who either were not able to work or do a variety of part to full time, wfh or in an office, is that not all of us are entitled to carers’ allowance, which is crap! I earn too much, but it is more about my role as a carer being recognised . One dd gets DLA mid rate, but I haven’t yet applied for another (when would I get the time or emotional energy!?!).

We have my DS's (8) ASD assessment tomorrow. I have had to give up my job as he hasn't been in school since May due to extremely high anxiety. He managed mainstream until going into yr3, that's when his problems really came to light. He masked a lot, but hated school and nursery.
We have a virtual tutor 3 days a week and I do the schooling for the rest of the week. It's hard going and there is no way I could work anymore.
Keep working as long as you can, he may handle mainstream or may not, it's about taking one day at a time and see how he goes.

Do not see nursery and school as the solution to the childcare problem - you will need to factor in lots of school holidays, inset days, attending appointments and meetings for your son, and also periods when your child is off school sick.

You may love your job, you may love the double income, you may love going on holiday, heck you may love being able to afford e.g. a 3bed semi rather than a 2bed terrace because you have a double income. But sometimes you have to make a sacrifice. In our case, DH doesn't work so that he can care for our son during all of the above.

I am full time and solo parent. My child has been in various nurseries and childcare settings and now attends a mainstream school. Yes, it's difficult. Some childcare providers have suggested I take him away, which was gutting. But I'm a sole earner and the carers act says I'm entitled to work. I'm determined to make it happen. I know things could get more difficult when he is a teenager. I think you should press as early as possible for as much support as possible. Get your child a great paper trail, in terms of needs. Self refer for OT/SLT/Statement. Get DLA, short breaks/respite etc and join parent groups to find out what's locally available. That all helps with supporting your working life, going forward.

Tax free childcare allows you to claim 40% of childcare costs for a disabled child, as opposed to the usual 20%. Make sure you get to the citizens advice to find out what you are entitled to.

I do, but it's unbelievably hard right now. My DS was only diagnosed a year ago, just before he turned 13. I work 60 - 70 hours a week and as of last week am off with stress as DS isn't able to go to school. If he attended school, I would carry on working.

At the moment, I spend hours making phone calls, sending emails, having meetings, filling in forms and so on - anything to try and get him an education.

I went back part time when he started school. He was diagnosed at 2.5 and I was fortunate that DP earns enough for me to not work in that time.

Depends on the induvidual and circumstances.

DD is 12 and HFA, she is quite independent so I am able to work (DH works full time).

I take my hat off to those with multiple autistic children or those with very challenging behaviour.

My relative currently works for herself and works her time around the times he needs her most. However at age 5 he’s just strayed at full time special school so she works school hours now. I think it depends on your child’s needs but I wouldn’t give up my job as long term it’s not helping anyone.
Part time for you amor husband might work for you.

Everyone's different.
You need to see how it goes, rather than decide now.

Both my children have autism. Well, not children now, they're in their 20s.
Being employed proved impossible for us so we became self employed.
Not that that's much easier. It comes with its own set of challenges but gave us the flexibility we needed that being employed could not

No. Mine doesn't manage school so I have to home educate. I could work in the evening and weekends but fortunately I don't need to.

So much of what you're trying to plan for is unplannable. A poster above mentioned how great the childminder was for her son but my friend's son just could not cope with a childminder (they tried two) but when he went to nursery, he thrived immediately.

Friend is a nurse and her DH also works full time.

Her son is verbal but has a lot of social issues and also very sensitive but it's managed well. He's now in secondary.

You'll have to play it by ear OP

If working is working for you keep going. If it becomes unworkable then you will have to find a solution at that points.
My personal experience is my sons needs got greater as he got older, that there is no childcare suitable at all and education dwindled to out of school for a year and has built back up to a whopping 12 hours now. I needed a huge amount of time to battle the LA and drive to medical appointments too. I do work but part time with support from grandparents and my husband had to get a new job that allowed him to be more involved.

No I don't work and haven't done since lockdown. The family support worker said I should stop if I could. I'm not sure how managed before as I struggle now. I'm a single parent and always have been. I don't think anyone should feel any guilt. It's tough. If anyone thinks we're lazy then they're very lucky that they're not in the same situation.

My sons needs mean i gave up work. He is what you would class as high functioning however the reality is he masks at school and cant cope with before or after school care, he also needs the half terms and school holidays to decompress so holiday care is out. He doesnt sleep well so some nights im lucky to get 2hrs sleep which really took its toll on me when i was working, physically and mentally i was exhausted.

He is in mainstream school for now but i cant see that being the case for much longer. I get calls at least once a week to collect him early because he isnt coping and needs to come home.

Sorry that will teach me to read the OP in full . Whatever works for you is what is best and if that's working then that's great. Take no notice of the comments from friends. It's a very personal choice. You may change your mind in the future and that's ok too.

Finding a flexible employer is a huge part of the battle. Also getting my child on melatonin made a difference as he could suddenly sleep.

I was a primary school teacher and intended to go back after my second daughter was two. But by then my eldest aged 4 was diagnosed and it became apparent she’d not cope with a full school day plus before and after care. She still wakes multiple times a night too.

If you can hang on to your job I would. Teaching isn’t flexible but if your job has flexibility and you have family help (I have none) then hopefully you can make something work.

I get CA and my daughter gets HRDLA which helps but god would I love a job again and I worry for the future - pension etc

Word of warning - a diagnosis does not get you additional support as such. Get the diagnosis then get an EHCP.