Almost half of the participant’s children (8) go to specialized centres. Most of these centres mentioned by the parents were available in Saudi, while a few parents also talked about their experience with centres abroad. Such experiences vary along with the different transitions that their children had within a specialized centre.
6.2.1.1 Positive experience with specialized centres
All of the parents who had children in the specialized centres had some positive experiences that they shared. These experiences influence the child’s transition to the centres whether positively or not, along with the different transitions that a child may go through within them. The common positive theme that these parents expressed was the centres’ cooperation with the parents and understanding of their child’s condition. Having a positive communication between the centres and the parents makes them feel connected and informed about their children’s progress and less worried:
‘They are cooperative, friendly, and professional...’ (Parent 1)
‘The centre that he is at now are cooperative, they invite the parents from time to time to come and watch your son for a day in school, they assess them and send us his progress report, we also have a notebook where the teacher writes his comments or questions about son’s behaviour or progress, and we as parents comment back or ask questions on the same notebook’ (Parent 3)
The centre’s cooperation with the parents was described in terms of their responsiveness, providing support on matters those parents or children needs and by keeping them updated with their child’s progress. Another mother’s positive experience with the centre concerned its reliability and the services that they provide, such as outings for the children. One mother mentioned that the centre helped her by guiding her and explaining her child’s plan, which
included educational, social, and self-help skills. This made her feel better when she previously had been feeling overwhelmed and helpless. She said:
‘ It was a very good centre, and they helped me. I went there crying, and I was
devastated, my son drove me crazy… So we started by making him a plan … and what were the activities and things that they will work with him’ (parent 7)
The improvement of child behaviours, skills and learning was also considered as a positive experience that three of the parents had with the centres, along with the different services or activities that they provide:
‘there were some things that our son learned quite quickly, such as computer and art’ (parent 10)
‘They have worked really hard with her on behaviour management, concentration, focusing and paying attention, speech and everything including art. I can see the difference in her…she is much better now except for the speech’ (Parent 11)
The cooperation of the specialized centres and their teachers with the parents are very
important for the parental satisfaction with their child’s education (Rattaz et al., 2014). These mothers spoke about the positive experience with the centres: their comments emphasised the importance of the cooperation of the centres with the parents, along with providing them with information, appropriate services and resources for their children. If a parent was not satisfied with the centre they could transfer the child to another centre. Unfortunately, this entails yet another transition that the child has to go through. Therefore, having a good centre that provides positive experiences will lead to a satisfied child and a parent.
6.2.1.2 Limited experience with the specialized centres
Some of the mothers spoke of the mixed experiences that they faced with their children’s specialized centres. One of the mothers mentioned that she had a problem with one of the teachers, when her child transitioned to a new class:
‘I never had any problem with them, except once when they transferred him to a class with a Teacher called (Teacher B). I had a problem with that teacher and his
assistant’ (Parent 1)
However, she did not elaborate on what were her specific concerns, but the reason this was raised was that the centre and the teacher were not listening and engaging with the parent’s
views and concerns. Finding a suitable specialized centre is vital, as two of the parents spoke about their distressing experience in not finding one that had professional and knowledgeable staff that could benefit their child’s learning:
‘I found out that they used to put the children in a room and open the TV on a kids music channel for the whole day. I was surprised to know that the first centre didn’t use to teach him anything beneficial… they told me you could design a program for your child. But I don’t know! ‘ (Parent 8)
‘… I don’t think that they had well trained specialist or teachers who were qualified; I think the teachers there didn’t even held a degree in education. They used to
implement some of the basic simple programs and behaviour management; they also lacked teaching the children some of the academic skills… They didn’t know how to work with our son’ (Parent 10)
The mother continued by stating that the challenging experience was also with the teachers, one of whom was not professional in the way of talking with them, while another one used to pinch the child:
‘what was annoying him in the previous centre were some of the teachers. Some of the teachers in the previous centre used to pinch children very harshly, we once
complained….and they actually took the teacher’s side and not ours…then one of teachers actually told us: this is the way to control the child. Another teacher just said that your child is spoiled, which is not appropriate to say’ (Parent 10)
All of these challenging experiences affected the parents and the children, by hampering their progress and transition. These experiences varied from changing the teacher, lack of
cooperation, lack of qualified centres and teachers, to unethical teachers. Moving children to male’s only centres or sections presents another challenge.
6.2.1.3 Male sections/centres
When boys begin to show signs of puberty, which is at approximately 10 years of age, they are transferred to the male sections within specialized centres or to another centre that has all male staff. This affects those children with ASD, since Saudi Arabia is a gender-segregated society (Madi, 2014). Four of the parents spoke about the transition of their children to be taught only by males and how it was for them. One of them spoke about the rules for transferring boys to male only classes and the difficulties that her son had coping with this new transition:
‘There was a new rule that after the age of 12 children cannot stay in regular centres, and they have to be moved…. In addition, all the teachers have to be male teachers for male students’ (parent 8)
‘At the beginning it was difficult for him to accept and adjust with the new specialized centre, because he stayed in the previous one for about 7 years, especially that the staff are all males. Accordingly, we started for one month with a daily session that lasted only two hours, until he began to take it slowly eventually with acceptance.’ (Parent 8)
Another mother had two children with autism, the youngest a girl and the eldest a man who was 24 years old. They both used to go to the same centre and were in the same class. The mother said that her son’s transition to a males only centre was the father’s idea, for the reason that he believed that the child needed to learn and model masculine behaviours:
‘Both of my children used to go to the same centre, and his father was refusing that he stays under the care of women, he said that he won’t be a man…He used to tell me that it is better if he stays with men, especially when he started the transition to the puberty phase… so he can start learning from them.’ (Parent 4)
Some parents can struggle with the transition of their sons to a new centre, because they feel a rapport with the staff and are comfortable with the previous one. As mothers are the ones who are mostly dealing with their child’s education, when the child moves to a male section or centre the staff are going to be all males. This makes it harder for the mother to directly communicate with them due to the culture in the KSA:
‘They don’t accept older children, after the age of 11. So they told me that I have to move him to the male centre because he grew up. I moved him while I was crying feeling sorry that I had to take him out from there…The previous centre had all female staff, so it was easier for me to deal with. The principal of the centre was a
psychologist, and he used to be cooperative and understanding. He told me that… he might suffer, but he will eventually get used to us and he will settle down. The period when the child transitions from one centre to the other is a challenging phase, that we suffer as parents as well. Because his teacher changed, the person who used to
understand him, the way they used to deal with him is different. Some people used to be calm and kind, and some are strict. It made him more tense....’ (Parent 7)
Three of the parents said that their children found it hard to accept this change of transitioning to a male centre or section, and they expressed this by refusing to go and showing
unacceptable behaviour, such as having a tantrum, showing aggressiveness, and refusing to go to the centre:
‘…he was refusing to leave the house and go to the centre and threw himself on the floor. And he also used to refuse to enter the centre when he gets there….’ (Parent 4) ‘…At first he struggled and he used to cry refusing to wake up, get dressed, and go to the centre’ (Parent 3)
Culture impacts on the experiences and their quality in a way that sometimes conflicts with the child’s specific need. Since most of the available centres in Saudi are run by female staff, and it affects male children by having to move them to a male only sections or centre. Such a move entails a new transition that could be challenging and difficult for the child and the family. Hence, some parents make the difficult decision of sending their child abroad. 6.2.1.4 Centres abroad
Two parents spoke about their experience of sending their children to a specialized centre overseas, because of the lack of suitable centres for their children at that time, along with the lack of significant services for individuals with ASD in the country. One of the mothers who had two children with autism spoke of her experience of not finding an appropriate centre for her son because of the lack of centres and services at that time, especially since he is 24 years old. The son was sent to a residential centre in Jordan for about a year and few months, while she was working with her daughter. He stayed there until she settled down and the mother noticed an improvement in her son, who she then brought back to Saudi:
‘He became very challenging, and the centre told me … you need to find another place. So back then we didn’t have enough centres or available services that would suite my son. Therefore… I had to take my son to Jordan, which was because I was only able to be there for one of them.’ (Parent 4)
Fortunately, her two other children helped and supported her and their siblings by keeping her other two children with ASD in Saudi. Another parent of two sons with autism had different experiences with residential centres. Their first son is now 33 years old, and goes to a residential centre in Jordan because of the lack of centres and services in Saudi in the past, and because they faced difficulties with managing their child’s behaviour at that time. This parent revealed some positive and challenging experiences with the residential centre in Jordan, where initially their son’s behaviour improved. However, the parent had an
son down without making them aware of it, which left her feeling devastated. Even so, the last time the mother visited the centre she had a positive experience because it had changed all the staff and recruited better ones:
‘They used to complain about his behaviours, and they used to give him some injections and medications [without my consent]. He used to sleep most of the time, and when I asked them: why is he sleeping most of the time? It is obvious that he is taking something that would make him sleep all day; we really suffered with (son’s name1) in Jordan a lot. I used to come back home psychologically sick from this matter. Though, when I went there last time he was really doing well, thanks to Allah’ (Parent 10)
The parents wanted to bring their son back to the KSA after going through these mixed experiences, but they had no choice because only centres abroad provide a range of facilities and services, which are not available in the KSA. This made the parent’s feel powerless having to leave their child abroad, in order to get better provision:
‘We were thinking of bringing him back and providing all of the facilities for him at home, but I told my family that we can’t do that. because… they have a lot of facilities and services there. And they have a lot of specialists… we don’t have all this? They have different specialists form different majors, like a speech therapist, a psychologist and many more who work with the children.’ (Parent 10)
The second son is twenty years old and the parent took him to a residential centre in UAE for two years, and they brought him back after their experiences there, because they felt that their son did not improve. The parent also said that transitioning from one country to the other was a pressure on their second son and on them as a family, because he had a new place to eat and sleep, which was not like his home:
‘The transition from one country to the other is difficult, because (son’s name2) got psychologically sick when he went to UAE. It was a new place for him, new
environment, different food, and everything was new and different to him’ (Parent 10)
Another mother had a different experience with a centre abroad, since she brought a private teacher from there and she started home schooling her daughter, with the supervision and plans from a centre in South Africa:
‘So we were going to South Africa for our summer holiday…. we found out about a special teacher from a centre, where you can have a teacher with a special program that she can teach her at home. So I started the journey since then with home schooling.’ (Parent 2)
‘… they developed an IEP [individualized educational plan] for her… they send a program every month, they send books, social stories, and anything useful.’ (Parent 2)
The mother continued talking about her positive experience with the centre from abroad, which she found very helpful and cooperative, because they were providing them with beneficial materials and resources. The services that the parent received was more suited to her child:
‘For example, once I told them that I am travelling, and I need a social story. They told me to send them all of the pictures of our next trip and we will make it for you. This is very helpful, and we don’t find this with centres here in the KSA, you just request something and you get it.’ (Parent 2)
The parents in this section spoke about their different experiences with the centres abroad, which were residential specialised centers or centres that provide teachers. The lack of appropriate specialized centres and services in Saudi Arabia were the primary reasons why parents chose to take and look for services abroad. These parents were proactive parents who were looking for better provisions for their children from abroad.
6.2.1.5 Lack of centres
A number of parents (6 participants) have spoken about the need of having more suitable specialized centres that provides adequate services and support for their children, which were lacking or very limited in the kingdom. They reported:
‘… there was no place for her to go to, and there wasn’t any special centre that my husband and I liked for our daughter.’ (Parent 2)
Three parents specifically expressed that the lack of appropriate centres was more challenging in the past because they had older children with autism:
‘This was 10 years ago or more, we didn’t use to have a lot of specialized centres’ and things like that. (Parent 8)
Another major concern that two of the interviewees talked about was the lack of centres for children after the age of 16, as they are regarded as graduates from the specialized centres at that age. It also leaves the parents wondering and worrying about what to do with their children after that age:
‘I wish if they would develop a place for teenagers after they consider them graduates… because we do not want our kids to be sitting at home after they graduate from the centres…There are ones who graduated and got employed and others who graduated and are staying at home.’ (Parent 11)
‘… he will only be at the centre until the age of 16 when they supposedly graduate from it! I still don’t know where I am going to take him after that?’(Parent 3) The lack of centres was an issue that the respondents spoke about, and their wish for more specialized centres that could provide suitable services for their children, which would help them during the different transitions in their lives.