4.3 Theme Presentation
4.3.7 Support system
4.3.7.1 Family support.
The importance of social and emotional support is paramount in mediating the stressors.
According to Miller et al. (2001), social support buffers the amount of stress caregivers’
experience. Some caregivers in the study felt they were being supported by their family members and that helped to mediate the amount of stress they experienced. Others felt they were not receiving enough support from their family members. The following quotes indicate the perceived support that the participants felt they receive.
Participant 6 “…I live with my mother in-law and his uncle and they support us, yah, we live here with them …”
Participant 1 “I think just because people don’t necessarily understand like…. Caring for a child that has special needs what it entails so I think they always more on the side of assuming that you don’t actually need any more support than that what you actual have, or maybe--- I’m a professional nurse –I’m a nurse by profession. I think that they assume that just because I’m in the health field I have it sorted out basically, so not that they are not supportive it’s like I think they assume I don’t need their support.”
Participant 5 “My partner is very supportive, it’s just that at the moment we do not stay together full time. He tries his utmost best to understand him to normalize his condition … because even if we are going to the mall and he starts doing his things his father tries to understand him.”
Participant 7 “Uhm my family is very supportive they understand him very well as we speak now he is with his gran from the father’s side. They understand him because there
are other kids there. They support us and him in all aspects. My mother is a retired nurse so she did have a clue about autism and all that and she did say that I think this child has autism. She also came in very handy in terms of –do this and do that and she asked around…”
Another source of support came in the form of siblings. The relationship between a typically growing child and child with ASD sometimes become ‘parentified’ (Boszormenyi-Nagy, 2014). That means that parental characteristics are displayed by the typical child towards with ASD child. There are certain dangers that this poses once it becomes burdensome to the child assuming the duties of being a parent (Hooper, 2007). However, caregivers reported the positive outcomes this has had on their children with autism.
Participant 2 “…his sister was born in 2008 so---- she is clever by nature, she is the one who is actually---I would say who actually helped him grow and understand certain things better in life and how things should be done ---big time …”
Some caregivers felt isolated and lonely with no support. Having a child with ASD is depicted as a hindrance in the amount of support they felt they had received as a caregiver.
Participant 4 “…well I don’t have a family here. It was just me, my husband and my child.
And my husband passed away in 2013. My daughter also I can’t take care of her, so one of the family members—my husband’s brother one day came to take her to Zimbabwe because I was struggling. But he has a problem and he can’t go anywhere that’s why he is living with me…”
4.3.7.2 Governmental support.
The participants indicated that they were trying by all means to cope with the condition that was confusing to them or which they knew little about. They tried getting support from government facilities, such as information on autism spectrum disorder, in order to empower and educate themselves. A number of participants reported not receiving any support from the
government, for reasons such as getting a better salary package, while others reported receiving governmental financial support. The following quotes portray the participant’s perception about governmental support:
Participant 3 “…No! Maybe there is, it’s just that we not taking advantage of it—uhh I don’t know any that I could or get. Maybe it’s just because I don’t need it for a lack of a better word …”
Participant 1 “Ahh nope, there is nothing that I know of from governmental facility. I know they do have schools for children with special needs but their schools don’t cater to their needs…”
Participant 5 “Yah I’m not receiving any assistant…..they told me that because of my salary package I don’t qualify.”
Participant 7 “…I went to pharmacy and the pharmacist said do you know that you can get this medication because I am a pharmacist at King Edwards—free—instead of paying, because we were paying about R700 on a monthly basis and at time he was not in school because it was just too much for us, we took him out of school. So, what we did was we followed the procedure where he continued to receive his medication through the clinic…”
Participant 2 “There is nothing that I know of beside the school, I think it’s subsidized by the government since we don’t pay any school fees I would take that as the government support.”
Participant 6 “…we have a disability grant, yah, we went through SASSA so they pay us every month. The process was long and hard, yah since last year November and we got it this year in February…”
4.3.7.3 Limited resources
The limited number of resources was another theme that emerged. Participants expressed concerns in terms of finding schools for their children with autism, as well as finding early
intervention centres. The participants indicated that there were few schools available and some were extremely expensive.
Participant 2 “... it wasn’t that easy in a sense but it helped being part of the Action in Autism centre because that’s where we got the list and then we looked at the area I stay near the Woodpark area so we learnt that there was one in woodlands which was close by so they were the first school to approach---parents were complaining that their kinds are 10 years others 15 years and they have never been to school because there is just nothing available for them.”
Participant 7 “…it was a bit of a challenge to find a school, because we applied first at Golden gateway around November and they told us that based on the report they received from his previous school [Action in Autism], that their school is not the best school for him because of his condition. He is a smart child and they won’t be doing him any favour by accepting him and they only told us this in November so we had a bit of a challenge its November he can’t go back to Action in Autism . The school are opening early in 2018 and we need to get a school and there aren’t so many schools that accept kids with autism and so what we did is we ended up approaching the Department of Education …”
Participant 1 “…I didn’t find any early intervention centre so they basically take kids after they are 6—from the age of 7 onwards and by then is a little bit too late--- also the facilities that they do have, they don’t--- okay the ones that I actually went to and got information on--- they don’t separate their children on what you call--- their developmental levels, so they sort of like ahh all children are group together—ahh because you can assess even if you don’t do a proper assessment on a child but you can tell that this child is better off than this child, so they all group into one so my question will then be how do you stimulate this child in his way and then also stimulate this one when they have completely different needs…”
Participant 3 “…you have got to go through an Educational Psychologist, you gotta have a report, they look if they can fit you into the school because the numbers are quite low…”