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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

If you have a child with autism ...

139 replies

Burritobowl84 · 12/10/2021 11:04

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?

OP posts:

LazySundayPlease · 13/10/2021 09:01

No they don't have a point.

It really depends on what your sons needs are. Every child with autism is different. What are his challenges?

tootiredtospeak · 13/10/2021 10:10

Even reading this thread just shows what a broad spectrum autism is and the effects it has on parenting and work. There is clearly a huge difference between a child who is HF and LF and each will bring its own challenges. I have often thought how it would have been easier if my child was LF as the majority of his difficulties come from a huge amount of anxiety in trying to navigate a neuro world. I stupidly thought for a long time that if he hadn't a clue that he was different and what life could have been like then he and I would have been so much happier. I know that's crazy now as he attends a special needs college and has after 3 years trying just learnt to drive which will give him so much independence. He still has no real friends or social life but I have created him one with college a work placement volunteering and activities he enjoys like a basketball club. I realise now that no matter how hard he finds these things sometimes he is so much more capable than some and it must be a very difference experience parenting a LF child with autism. Truth is there is no right or wrong answer just whatever works for you.

lnsufficientFuns · 13/10/2021 10:15

Agree with everybody saying that just varies between children’s.

But also - it’s not linear! Ages 2-5 were horrendous for us but he was so NT from starting school.... from 8 the anxiety is creeping in big time once again. It basically makes us all anxious. The slighted thing can tip him off and I have no idea what puberty will bring - that’s what really worries me.

One unkind word from a grandparent led to weeks of stress and upset recently for example.

One fire alarm led to a fear of any beeping noises which lasted for years.

It’s so exhausting.

EmeraldShamrock · 13/10/2021 13:27

My DS is highly intelligent with severe social problems if you hit/tip him unexpectedly he has to hurt you back.
His teacher accidentally hit off his chair he chased her around the room and had to restrained.
His response to most situations if disproportionate and rage.

alwaysscared · 13/10/2021 17:03

Hi all, we had our assessment today (a virtual one) and they said it has to go to a panel and then we will get the report a couple of weeks after, so we are looking at at least 5 weeks. Is that normal??

gogohm · 13/10/2021 17:05

Yes but only because I worked for a sympathetic employer pt. I list two jobs before getting that one. She's now an adult and fairly independent

IveGotASongThatllGetOnYNerves · 13/10/2021 17:37

Autism is imo an umbrella term and one child with autism is exactly that. One child with autism. It doesn't allow you to speak as an authority on Autism, just.as an authority on that one child.

In my sample size of 2 I have my eldest who was in nappies until 6 (and suffered soiling for several more years) didn't talk coherently until 7 and we were put under a lot of pressure to teach him makaton and put him in a specialist placement. He was so violent. He bit, scratched, screamed, headbutted. He broke my nose.

He's now 22. He's at uni. He drives and has his own car. He will be able to live independently with minimal support.

Then there's my second. The easiest, happiest child you could imagine. Exclusively echolalic for years, out of nappies at 5, later DX with ADHD (passive inattentive) and most recently with PDA. He's now 21, great vocab, very creative, a great artist, a brilliant musician with perfect pitch... And totally unable to function. Needs 1:1, and 2:1 in high stress situations. Has attacked several of his 1:1s, no placement would take him in the end. He's now on antipsychotics and diazapam. He will be in a group home for his entire life.

You never know. At each stage you don't know what's ahead.

And a DX is in no way "an excuse not to work". That is extremely offensive. Depending on the child's needs, it may be a reason a person is unable to be in paid employment but it is not an 'excuse'.

AutumnIsTheBest · 13/10/2021 18:09

I worked up until DS2 was about 13. He has ASD and a learning disability. We have 3 other DC as well.

It was then his social anxiety and inappropriate behaviours really kicked in. His school treated him horrendously. I had been able to manage regular appointments and calls from school until then but it became unmanageable as he was going missing after school and was getting exclusions.

He was actually out of education from 14-16 as we couldn’t find a suitable provision and the one he attended from 16-18 was a disaster and he was often sent home and put on a reduced timetable.

His MH has got worse as he’s got older (now 19) and I’m finding it impossible to return to work as he can’t be left unsupervised all day, We have been waiting nearly a year for adult social services to assess him and get him a care plan in place .

I swapped a £45k a year job for £67 a week carers allowance but yeah, I used his diagnosis as an excuse to do that .

Fluffypastelslippers · 13/10/2021 18:21

@IveGotASongThatllGetOnYNerves

Autism is imo an umbrella term and one child with autism is exactly that. One child with autism. It doesn't allow you to speak as an authority on Autism, just.as an authority on that one child.

He's now 22. He's at uni. He drives and has his own car. He will be able to live independently with minimal support.

You never know. At each stage you don't know what's ahead.

This is everything I wish I was able to say but instead just got mad at the 'excuse' comment.

JADS · 13/10/2021 18:27

Yes but both dh and I have relatively flexible jobs. I work PT and dh works FT compressed hours. We also found a child minder who could cope with him until he went to special school at 7. We now have a PT nanny. It is bloody hard and we have a NT child too. Also DH and I are very well paid so we can throw money at the situation. We are the lucky ones though.

FortniteBoysMum · 13/10/2021 18:27

Ditch your friends they are nuts. My son has Autism, ARFID, ADHD,OCD and sensory Processing disorder. I have worked all his life and his almost 12. I thought for 7 years to get him diagnosed. If I gave up work I would be in hospital within 6 months as no doubt I would have a breakdown. Work keeps me sane. It means I can provide what he needs. I will say I cut my hours to weekends only at one point to fit in with partners hours or part-time so he was mainly with us. That was more because he has anemia due to his eating which meant he picks up every bug going and nursery sent him home sick so often I wasn't going to keep his place as I had to pay when he was ill. You need to look after yourself too and if that means working you carry on.

Mammyloveswine · 13/10/2021 20:06

My son is autistic but is coping well in mainstream school...we both work full time.

How old is your little one?

Londonwriter · 14/10/2021 15:54

What others have written here - if you meet one child with autism… you’ve met one child with autism.

I didn’t know my DS, aged four, was autistic until he was expelled from a private pre-reception due to challenging behaviours. I’d spent several months prior to that, during lockdown, looking after him and his baby brother either full or part-time.

He was managing fine two days a week at a forest school before then and he’s now at a mainstream primary.

Needless to say, he seems like a perfectly ‘normal’ kid to me - he just struggles with loud noises, bright lights and large groups. So, there’s no more reason I can’t work than any other parent.

That said, only you know your child’s needs. It’s going to vary dramatically based on the type of childcare you use and your child’s support needs.

user9764577436 · 14/10/2021 17:14

Just so you know, your child doesn’t need a diagnosis to access funding and things for nursery or school.

My daughter has suspected autism and is getting funding for nursery and I’m about to start the process of applying for funding for school. She is being added to the SEN register by the school which automatically triggers funding for her.

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