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 an autistic adult child and I gave up work when he was in primary school, as he required weekly appointments out of school and he was also regularly (illegally) excluded. I probably could have returned to work during his secondary years as he was in specialist school, but I preferred to focus on my wellbeing and working during his school hours would have left no time for my own interests and needs. And financially it wouldn't have made much sense as we got a lot of extra premiums due to disability/carer benefits. He's now at home f/t so I don't work as I'm his f/t carer. I'm happy not to have returned to work as he needs my support, and I don't really want the stress and commitment to being at work.

Could vote as no set answer.
I've 2 diagnosed asd one of those with adhd too. I don't work. With eldest I've have struggled from the start. Youngest not so much except there was no sleeping till near the end of primary but school he maged better. Eldest is a masker and suffers panic attacks and high anxiety. School is mainstream I do up to 7 school runs a day. You gest who seemed easier us now harder, back to not sleeping. He's a shouter and his impulse control is awful. Swearing at teacher. I'm mortified he's always been so sweet and honest. Please don't believe a diagnosis is a magic ticket. The school mine are in don't care, don't make any adjustments and in fact antagonise many situations through poor management and communication. Banging my head again an invisible wall daily and exhausted unfortunately. I'd love to work it's been so long so just play it by ear until a choice is taken out of your hands x

And the state of that post I made shows how exhausted I am waiting for sleep from anyone else in this house

Sorry, I haven't read the full thread.

I'm a Sahp because that works for our family. I miss work so much though.

In regards to the assessments.... not all private diagnosis will be accepted by the NHS. You may be better off investing in an independent ed. psych, ot or slt reports (as required) to support an EHCP assessment. You'll (likely but not always) require these to get your child's needs detailed in section b and the provision to meet them detailed, specified and quantified in section f. Your child can have a plan and extra support for nursery if required, you do not need to wait for school.

Your child is still very young. If you’re happy working then carry on for as long as you can. I don’t think you’re selfish for wanting to continue working and if it works for you as a family in the future, then don’t stop because other people say you should.
I changed my job several times because my child couldn’t cope with child minders or after school clubs. I started working in a school to fit around his needs. I had to give up working altogether for a couple of years due to things not working out with school. Child on v restrictive timetable. School shocked that I gave up work!
I’m back at work now, in school again, full time school hours. If my child had coped with other carers, I would have definitely continued to work. The issue with school was awful but he wasn’t diagnosed then.

@Justrealised

Sorry, I haven't read the full thread.

I'm a Sahp because that works for our family. I miss work so much though.

In regards to the assessments.... not all private diagnosis will be accepted by the NHS. You may be better off investing in an independent ed. psych, ot or slt reports (as required) to support an EHCP assessment. You'll (likely but not always) require these to get your child's needs detailed in section b and the provision to meet them detailed, specified and quantified in section f. Your child can have a plan and extra support for nursery if required, you do not need to wait for school.

@Justrealised it’s so weird that private assessments are not accepted. I discussed this with the person who diagnosed my youngest and she didn't believe it happened. She said she worked partly privately and partly on the NHS and that she felt offended to think her judgement would be brought into question because someone had paid privately. The lack of acceptance suggests that it’s thought the parents have bought a diagnosis. Completely crazy!

She said she worked partly privately and partly on the NHS and that she felt offended to think her judgement would be brought into question because someone had paid privately

But, it's not diagnoses by people like her that are questioned.

Having a private dx done by someone who also works for the NHS is perfectly acceptable.

Having a private dx done by people who don't also work for the NHS is more complicated.

Some are genuine but sadly others are not adequately qualified or experienced enough and just do a few screening tests, then give a diagnosis, which is absolutely wrong.

If you can afford private diagnosis, please go to someone who also works for the NHS.

Private diagnosis needs to be multidisciplinary to meet nice guidelines. You shouldn't have any issues getting it accepted then

OP, as a parent of a send child you get judged whatever you do. There's no need to give up work unless you need too.

2 dc with autism and I’m a single parent.

There is no way I could hold down a full time job, and probably not a part time one either if it was fixed hours.

Over the years I’ve had to deal with:

• various periods of school refusal, many prolonged.

• one dc completely out of education and having to HE for 18 months whilst I got and EHCP for her and then had to find specialist provision.

• days off here and there due to sensory overload/being overwhelmed/bad sleep.

• so many meetings, earlier this year I actually felt like I was having a nervous breakdown as they were endless and so stressful (both dc moving up to new placements)

• needing to be around to collect dc early if one or other of them isn’t coping at school.

• having to drive to school rather than use transport as they can’t cope with it.

• advocating for my children, fighting their corner for them as they can’t communicate well enough to do it themselves. Constantly reminding various members of school staff that my child has autism, many teachers’ understanding of the implications of this is woeful IME.

• the social and emotional fall out of two dc with SEN trying to cope in an NT world, the tears at knowing they are different, not being invited to parties or play dates, they have been bullied, and really struggle with friendships. The emotional resources you need to keep them feeling ok are immense.

• my own exhaustion at coping with the above.

You have to fight for everything. You are blocked at every turn. The LA’s default position is to say no, and if you are not determined, articulate and have oodles of time to play their ridiculous games your child is scuppered. The amount of times I have been in tears feeling like I have no fight in me but desperately wanting/needing what is right for my children.

Sorry to be so negative, but it’s a long, bumpy road ahead. I work PT self employed but to be honest I don’t earn a lot at all, but I couldn’t have anyone relying on me to be at a certain place at a certain time. I have a first class degree and have never been able to use it. Now in my forties and I guess I will never have a career.

I we both work full time. DS is 4 and non-verbal and goes to specialist school. We put him on the school transport at 8:15, are working by 9am and then alternate days - one of us finishes at 3:30pm to do afterschool, and the other works till 7pm to bank the extra hours. This works for us, but mainly because DH works from home and I work locally.

I have DS and DD twins, both diagnosed with autism. DS has much greater challenges and was in a special school. DD was in mainstream but starting to drown and couldn't keep up any longer - but didn't qualify for special school.

Long story short, I home educate both now and they're very happy. I have worked FT throughout - but I went self employed so I had the flexibility to sort my hours around their needs. I still work FT around their home education.

With my DS, we had lots of difficulties with school refusal/anxiety at transitioning from home to school, despite it being a very lovely place. So drop-offs could take longer and occasionally I had to go back in. He is still in nappies (he's 11 now) and despite taking changes of clothes et to school, sometimes there would be multiple accidents/issues so I'd have to run stuff up to the school, or take him to the shower area to be cleaned up. I guess what I'm saying is that I couldn't have managed with a job that had regular hours.

But my DD's needs were very different, as is often the case with girls. She needs much closer attention in a way as her difficulties are hidden and if not careful, won't be spotted until she's at crisis.

So yes, it's possible to work in my experience but so much will depend on the needs of your child, and the school/preschool they get into. It's probably a bit early for you to know, but special school places are like a unicorn's egg - they're massively, massively oversubscribed and your LA will do anything to get your child into mainstream instead. Private schools often have a poor record supporting significant SEN (primary upwards, not nursery). So just think ahead and consider what the school expectations will look like.

I think you have to do what's best for you and your son regardless of what others think. After my son was born I worked part time. When we were going through diagnosis we decided that I would give up work. We receive disability and Carers which replaced my wage. Children's who are entitled to DLA also get 15 hours free childcare at age 2 and 30 hours at age 3. I started working again once my son was in school as I can earn upto £150 working 16 hours or less. My son is now 6 and is in mainstream school he has a one to one support for about 24 hours a week and is doing well.

Mine is 3, diagnosed at 2.5. Hes in an amazing mainstream nursery with additional support and is absolutely thriving there. He has his SALT, OT and physio appointments there too which is a huge help as he totally shuts down if we go to these appointments in a clinical setting.

We both work full time, my husband a standard 9-5 and I work a regular rota of days, evenings and nights including weekends which allows me several days at home with him in the week where we can fit in appointments and things if needed.

I work FT.

But it's considered Ft as it's 30hrs a week and TErm time only.

This works as I'm a LP.

But the holidays have allowed me the time to do the admin and appointments etc without it impacting my work. That's something you need to be aware of - that there can be lots of time needed to research things, argue the toss for support he should be getting etc.

I would agree with above posters that take it as it comes. So what's best for your family unit as you go along.

If you WFH how flexible are your employers? Could your DH and you swap hours round a bit and work flexitime off needed or one of you drop some hours?

And also out of school care will be dependent on level of need and local availability. It can be a bit of a postcode lottery. Consider a Nanny for holidays etc if needed.

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

I think this is quite illustrative if the fact that you can’t really know what lies ahead just now as autism is such a wide ranging diagnosis. My DD was diagnosed as autistic two years ago and is now 14. She is very bright academically and flourishing in a mainstream secondary. We do have to make adjustments for her at home eg quiet time for her to unwind but things are generally fine. When she wasn’t in the right school environment it was a different story, however, and she was off school more and needed much more support from us.

I think that there is such a wide range of needs and abilities/disabilities under the “autism” heading that you will just have to roll with it and see how you get on. We fully expect our DD to be able to go to uni/college and work, although she will probably need more support from us because of her autism.

I work part time from home which gives a lot of flexibility. DH is FT and has been abroad for extended periods of time so FT was not a viable option for me even without DD’s additional support needs. However, having work (and part time study) has been important for me personally, and work has also been necessary from a financial point of view.

Don’t let anyone guilt trip you whatever you decide.

@ByThePool2021

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

You should be aware that autism is a, huge spectrum, my son wont be working as an adult, unless it, s in a very limited capacity with lots of support, Its not an excuse, he just doesn't have the cognitive ability, he's at a special school, currently still working at pre school levels in year seven,.

I agree with a lot of previous posters who've suggested to say in work as long as you can and see how things go.

DH and I both work full time but in very flexible roles. We've both pretty senior so have some control over our days which helps a great deal.

Finding a supportive school has been a game changer for us - the previous mainstream school would be calling every day by noon asking us to bring him home. The current school bus collects him at 8am and drops him home at 4.30pm, so we can get pretty solid work days in and then top up at night.

DH and I been very upfront with our workplaces about our son's needs and I think that has helped.

Next year we will change countries and our son will go to mainstream high school. We are strongly considering me dropping back to school hours / part - time (me because I'm the lower earner) so that I can do school drop-offs and pick ups.

He has ADHD and Aspergers.

Wishing you all the best with your DS.

Ds is 17 and I work very part time hours but I'm barely coping with that at the moment.

He can't leave our home independently, so needs me for all journeys and all school runs. (when he attends).
We are currently fighting the LA for a specialist placement and EHCP contents, that in itself feels like a full-time job at the moment.

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

You should also be aware that every DC is different it is a huge spectrum with a wide range of sensory issues, social, communications, toilet abilities, verbal non verbal/language disorders.
There are levels of autism too, being used for diagnosis in Ireland.
My DS is a 2, he'll struggle against autism 3 but be completely independent compared with the DC with Autism 1 severe issues in every area of the flag list.
An example of a 10 year old girl on my street, she asks me every time "what is your name? How old are you? Are you happy? She'll scoot by 1 minute later and totally forget she met me starting the same process again and again, she'd go with anyone, she is in nappies and has to be fully supervised ❤

@Merryoldgoat

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?

Is that your view of autism as a whole or just your experience? I also won't allow my kid who is toilet trained and can follow instructions use his autism as an excuse.

I work now but didn’t for many years and claimed carers allowance. The main reasons being: exhaustion (my child has a sleep disorder which has improved with time but when they were younger would be awake for hours at night and need constant supervision. Also more crucially, no suitable childcare available. I think that’s a problem for many parents in this situation.

I now work part time (under 20 hours a week) and the only reason this is possible is because my current partner (child’s stepparent) works from home and can help me juggle childcare when needed. Before I was a single parent with no support and before that with someone who refused to do anything childcare related.

I hope you find a way to make things work for your family.

@gamerchick

No of course not. There will be plenty of autistic people more than capable of a variety of jobs. There will also be plenty for whom their autism is a reason they can’t work.

My oldest boy would very likely be able to live alone, work, support himself and need no input.

My younger boy can’t follow any instructions yet, can’t speak, is completely unable to be toilet trained yet. I have no idea how he’ll develop but he’s unlikely to be able to work.

I want my children to achieve the best they can and I’ll champion them all the way but I find it insulting when people say things like the text I quoted.

@ByThePool2021

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

What you’ve said has really pissed me off and I’ve taken it a bit personally. I think it’s because I’ve been treated with suspicion by enough people over the years regarding my child’s additional needs affecting my opportunities to work by people who have no fucking clue what it’s like.

To have basically the same sort of judgement from someone in a similar boat who apparently works with those on the spectrum for their job(!) really is a kick in the teeth.

I was a SAHM when ds was diagnosed with ASD at age 10. He is now at home unable to go to school with high anxiety. Don't give up your work. I now work part time and I've just increased my hours for the extra income and mental respite!

I don’t work.

I was supposed to go back when he started school but everybody from the paediatrician to his teacher warned me that he wouldn’t cope with staying in at school or somewhere else until 5pm.

He’s now ten and they’re absolutely correct, play dates are not even possible after school. He literally comes home and collapses after a day of being diligent clever sociable and all the rest of it.

At the moment he’s asleep in my bed because he was having anxiety attacks all night about (my😳) death. At times like this I’m very grateful that I can afford to stay home but it’s bloody boring.

Hoping that WFH really takes off as it will be my only chance of ever working while he’s so anxious.