Many parents’ working lives had been affected by their experiences of having responsibility for caring for a child/ren on the autism spectrum. Several mothers had given up work or not returned to work as they had originally planned when they had children. The reasons included:
A lack of appropriate childcare provision available
Some of the children needing a lot of support in school and after school
Appointments with various health professionals during normal working hours, which were difficult to attend when employers were inflexible or unsupportive
Simply feeling too tense and preoccupied to cope with the demands of work
Nicki, a local authority employee, and Mark, a full time carer, have two children; Tyler aged six and Emma aged five. Ethnic background/nationality: White British
I mean the other thing that presents a small problem is that in terms of working arrangements because now they are both at full time school, most couples then both have full time jobs. Well with Tyler we can’t do that because school holiday cover would be very difficult. Emma can go to holiday clubs at her school but Tyler doesn’t have such a provision although they have just appointed somebody to look at the holiday provision and things that are across the special schools, so hopefully by 2008 that will be an option and for me that signifies that actually the government is changing its view on children SEN and they are starting to provide more facilities which can only be a good thing, but for now it means that I still work full time and Mark has to work hours around schooling.
So even when the kids are at school because he can’t switch between jobs every term, so he still does a part time morning job which he does before the kids go to school and we are looking at options for ways that he can do work that is term time only. But as a man that is far more difficult to secure than it is as a woman, because there are lots of jobs within schools that you can do term time only; you could be a school cook or a dinner lady. Lots of organisations offer jobs to women that are term time only because they understand about parents back into work and all those sorts of things but they don’t offer the same for men. So people who have role reversal per se find it much more difficult. Which is what we have got isn’t it?
Age at interview:
Rachel, a former social worker, is now a full time carer and lives with her husband and two sons aged 9 and 6.
You said you had given up work. Did you plan to go back to work when the children were grown?
Yes. I mean I just gave up work because it was just so tense and I knew Tom would have acute problems settling in to school. I didn’t quite know how many. And my plan was to give up for a year or so and then go back when things had calmed down and he had had me at home for a little while, but no… And then I thought well in a few years… I thought if Matthew hadn’t had Asperger's this period of time between now and Thomas going to secondary school I would have got a little job for a couple of years. Obviously I can’t do that to Matthew because he needs me ever so calm in the morning and calm in the evenings and there’s a lot of appointments for him as well, but I think eventually I probably will go back to work. Mind you they don’t make it easy for social workers to go back any more so it depends if they still want me then. But my plan was always to go back to work eventually. But right now they’re my priority. So this is what I do. It is just getting used to the idea of not working is a bit odd I will be honest with you because I always did. So being at home all day is very, very strange.
Age at interview:
Jane and Dan, both students, have two children aged 4 and 3. Ethnic background/nationality: White British and Black Carribean.
Jane' In January sure I had to give up work because of [name]’s appointment and to care for [name] was getting more and more difficult. So I gave up work and became [name]’s full time carer for ten months, which was really hard, because sometimes five times a week we were seeing, we were going to different hospitals and different appointments and we had to see different people, and he had to do different assessments and blood tests and it was really stressful that period, because it just felt like sort of time when you meet professional people you feel that everybody… you have to repeat yourself over and over again and everybody wants a piece of him, and they are all talking about him, but they don’t really know him, and I have found that sometimes really difficult, but the people who we work with on a long time bases, the portage work that comes to help, the speech therapist, they have got to know us as a family and it is really nice as well, that they have come on the journey with us, because they have really sort of helped us, helped me, and helped [name] in terms of our home life and getting [name], getting us ready for school and getting [name] trying to communicate and giving us advice on the best sort of possible things.
Jane' But I am finding, I find that anything that [name] needs in terms of like nappies because he is still incontinent or Disability Living Allowance, everything is a weight on your shoulder because the services are so short. We don’t… we have only just started having respite care now and he is three and a half and it is a real sort of struggle. That has been a real challenge because we are with him 24 hours a day, 24/7, we care for him 24/7 and some days he will just not let up. From six o’clock he is up in the morning until seven o’clock at night, he is up and he is around the house, and he has no sense of danger, and a very, very low pain threshold. So at any minute he can do something and you have got to sort of stop him and tell him or he can have an accident and he won’t tell you. So there is always something sort of in the day that will prove challenging with him.
One parent stacked shelves at night for years so that she could be available during the day in case she was needed. Another parent who worked full-time talked about the tensions she felt between wanting to work because her work was very important to her, and feeling exhausted because she always had to look as though she was coping.
Jeanine, a local authority employee, lives with her daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
And you know, employers may be reasonable about certain things but you have to keep taking annual leave to go to hospital visits or go to, you know, assessments or for meetings at school and stuff like that, you know, that is how it is, you know, and you take your flexi time or you take your annual leave and that reduces the time you have in the school holidays with your children. But you know… maybe that is why a lot of people who have got children with autism don’t work because it is difficult to juggle.
And you know, if you want for example, they have suggested, they haven’t sent me the letter yet, but they have suggested he goes to a class on a Tuesday night at 4 o’clock or quarter past four at a school, so that he can do some more occupational therapy as part of the group, because obviously that is more economic for the health service to do it in that way but I work full time, my mum who is 74, takes my daughter to orchestra on a Tuesday night. My Mum and Dad don’t have another car, so my Dad who is 78 can’t take my son to the class. So even if I do get the letter I have no idea how I am going to get him there anyway because I am at work. And I have still got to do my 37 hours a week and if I leave early one night I have got to make the hours up on the other nights, but that means that his sister can’t go to some of the other things that she goes to because I can’t get back in time to take her to them. Well it is a juggling thing and it is how to do it and there is just me and my Mum and Dad to do it, and it is just not practical.
Some parents had changed their career path to work in children’s services as a result of their experiences. One father worked full-time as the organiser of the support group he had helped set up. A few parents who worked in local government had shifted into children’s services through an interest in helping to shape and become involved in support and service provision. One mother had been paid to write newspaper articles about her experiences which was “lovely”.
In addition to not being able to work, parents talked about other financial costs such as therapies, diets and the expensive hobbies some of the children had. One parent talked about the cost of her son’s “intense need to buy all the Pokemon, all the train sets, all the Brio and all the Games Workshop”. Other parents had spent thousands of pounds on therapies and the cost of following a gluten or dairy free diet was high although some could get products on prescription from their GPs. One mother said, “I haven’t yet learnt the art of making decent gluten free bread”.
People on the autism spectrum and parents of children on the spectrum may be entitled to a range of welfare benefits, such as Disability Living Allowance for those with children under 16 and Personal Independence Payments (PIP) for those over 16 and Carer’s Allowance (see GOV.UK for more details). Some parents felt that these allowances made a difference to their life though the Disability Living Allowance (DLA) forms were confusing, depressing and difficult to fill in. As one father said' “You have to fight for it, you know, you have to make out like he is the Tasmanian devil, the child, you have got to make out he is awful and because otherwise you won’t (get) anywhere.”
Nick, a design engineer, and Vikki, a teacher, have two sons aged 10 and 8. Ethnic background/nationality: White British.
But you know that money is really useful. It allows us to do things that we wouldn’t be able to do. So first when we got it, we thought, we made a mistake, we actually phoned them to ask whether they made a mistake and they said, “You answered all the questions.” “Yes.” “You answered them all honestly?” “Yes.” “Well that is what you are entitled to.” So it is definitely well worth… it is quite a tortuous process. At first it was quite a painful process because were actually putting down in black and white all the problems that you have with your child and it took what nearly three weeks to fill out the form.
Well I actually did it on line so that you could write a bit and save it, go away and come back and have a got at it because if you had filled it out you could almost slit your wrists and think well there is no point in having this child because of everything and you couldn’t be positive. So I filled it out with a friend and we were both next to each other filling out these forms and she was saying well I could put he’s better, but you can’t put the word better, if you put better into that form they are not going to give you anything and in the end we were just you know having a tea, writing a few sentences and putting it to bed and bringing it out again. But again the money that is in the bank is for the whole family, it is not just saved so that Peter can have this toy, Peter can have that. It so, for example, Tom can go out separately to his brother or we can go out altogether and do something as a family, which is what we are using the money for really.