Giving up work?

Hi everyone, 

Sorry this will be longwinded.. I am looking for advice or experiences of giving up work to look after children with ASD.

My son (3yo) is not yet diagnosed but on the pathway and showing many signs of ASD, namely social communication, need for routine/structure/visual aids, struggles with transitions, echolalia, intense interest in alphabet, reading and numbers to name a few.

I currently work full time and have two children, his NT sister being 2yo. I am the main earner in our family but not by much. I'm really struggling to keep a handle on everything at the moment. It's in my nature to try and soak up as much info as I can and be very involved and hands on, and I feel like I don't have a proper grasp of what my son needs right now. He doesn't sleep through the night and always needs me with him when he wakes up, so I am going to work exhausted and wishing I wasn't there.

My mum is our childcare twice a week but she is finding it tough at the moment as waiting for a hip replacement. We are due to move back closer to family soon but that depends on whether the chain completes or not and we don't have a date yet. The mortgage payment will be higher than our current house but the travel costs much less. We have debt from renovating our current property and we manage fine on our two incomes but I don't think we will if I give up work, which is what my heart tells me to do. I think we would have to get a debt management plan, but I can't do that before we move house. 

Iconstantly feel like I am not giving either of my children what they need because I am stretched so thin, and I'm constantly anxious that I'm underperforming at work too.

Please please can someone give me their experience of a similar situation, as I need to know there is a light at the end of the tunnel. I worry that it's my flight response to give up work, but isn't going to be sustainable in the long term, but if I don't then I will regret it. So torn and so done in.

Thanks in advance x

  • How do you pay for your housing, food, and other bills?

    I dream every day about quitting work, but don't see how it's possible unless I won the lottery.

  • I'm really happy that things turned out so well. Also as individual with both Autism and ADHD i honest recommended if your looking for diagnosis yourself that you go through the right to choose with Psychiatry-UK as the basic NHS route is riddle with administration issues and can take over several years to be seen. 

  • This is a very late reply, but I wanted to thank you for your response.

    I admit to feeling upset when I read your message because I felt misunderstood. I hate to upset anyone and you held a mirror up to me that forced me to retreat into myself and answer some tough questions. Since then I have been listening to autistic voices and will continue to do so. I am constantly learning. I apologise for the ableism I showed in my first question.

    By way of an update (that absolutely nobody asked for...)

    My son has now been diagnosed as autistic. He is receiving support in his transition to school via Thomas Outreach Programme, who have been fantastic. I am increasingly aware that I may also be ND and am awaiting assessment for ADHD.

    I am now a single mum and have left my high stress finance job in favour of working in a restaurant, which is much more fun for me and also fits around our routine. Lower stress levels in the house have resulted in better temperaments all round and easier routines. 

    Thank you again for taking the time to reply to me in such detail. Please accept my apologies for not acknowledging this sooner. 

  • I gave up work and don't regret it. I realised that happiness is the most valuable currency and working as a slave is irrational and just something which is programmed into people through society. Instead of being stuck in that office cubicle 45 hours a week wishing I was outside, I am now free and not any worse off financially

  • You shouldn’t give up employment for your child because you’ll fundamentally come to blame and resent your child, you’ll say that you will never feel this way but their will be episodes where you will feel like this and you will indirectly communicate this to your children through a range of unintentional behaviours. I have seen this happen to many times before. 

    many upon many mothers come onto the community page and post something similar and to be honest with you most of them use their autistic child as away of getting out of their working full time. If you want to quit working that should be your choices and your choice alone. If you choose to quit work you will have to make some significant sacrifices and the workload in order save money because more challenging than working. Their is no financial support or benefit that can recover a fraction of what you are earning full time unless your son has significant mobility or intellectual difficulties you will not get much in financial support.

    if you own your own home benefits are very unlikely as your home is assert above £6000 which disqualified you from universal credit and other income related benefits.

    you can request a needs assessment from your local authority that may result extra inventional support if their is a need such as rest bite care, out of school activities and clubs and possible childcare support but until theirs a formal diagnosis you may be denied. 

    Reasonable adjustment can be made at work to accommodate your children’s needs depending on your job. You may be able adjust your working hours.

    You are no single mother and you shouldn’t have the burden of being the only parent parenting. Your partners need to support you and lighten pressure you experiencing. 

    most other autistic people are really offended when they read posts like this because it makes out that autistic child is problematic when I fact it requires a different parenting approach. You don’t have to try and raise your children like everyone else. Try and find solutions of raising your children that suits both you and your children.

    I don’t mean to come across negativity so please don’t interpret what I have said in a negative manor. But what you are experiencing is what the adult autism community call neuro typical parent syndrome. You have a false expectation of what a parenting should be like and the autistic child has unexpectedly ruined how you imaged parenting to be like. Raising a child on the autism spectrum has it challenges but no more than a typical child the challengers are just different.