Participants identified common beliefs in the Nigerian culture about ASD or other developmental conditions that influences the community’s reaction to the mothers or children. Cultural attitudes were described related to the church and spirituality, and from family members and others. Participants discussed their spiritual faith and its impact on their journey. The issue of stigma was also discussed.
Church and spirituality. Seven participants identified that the typical belief among the Nigerian society is that ASD or developmental disorders are spiritual problems or of a supernatural cause. Participants identified experiencing different challenges at church. Participant 10 provided a brief description about the importance of spirituality and the church in Nigeria: "We are very spiritual in Nigeria, you will hear a lot of people talk about God. Everything in Nigeria is centered around the church. Everybody goes to the church first, including the family of children with special needs.” The following quotes exemplify the challenges experienced by the participants related to the spiritual beliefs and the church.
P1: His father wasn’t supportive. When it happened, he thought it was witchcraft, he thought I was a witch, and the [husband’s] family rejected me.
P3: I met someone and we went for prayer and that person prayed and said it's a spiritual problem.
P4: I remember one Sunday school we went to when we walked in the first time and the girls were just looking at him, whispering. When we came back the following Sunday they started whispering.
P6. One Reverend Sister asked me: Do you think that boy [child with ASD] is not possessed?
P7: I faced the most challenges in the church. Its church that comes to you and say "sister how nah, ah-ah you should pray a bit more. There was a woman that called me one day and she said I sat like that and allowed the devil to come into my life.
P8: The experience with the church is, most parents will want to sit maybe like two pews away from you, and start looking at you as if you have done something wrong. Our culture don't accept it [ASD]. We see it as demonic, we see it as evil. Some will reject autism and their children will be almost 10, 18 and they are still rejecting autism, they are still praying against it. When you tell them the child is autistic they say: what is autism? Why are you accepting that? Rebuke it! He is not autistic, God forbid!
P10: We have people that are deeply suspicious of the roots of disabilities. The disabilities that are visible they can say okay, but you look at a child on the spectrum and you say okay there is nothing that shows you that the child is on the spectrum. They [people] are just saying: this child, he is mad, it’s spiritual.
All participants also discussed their spiritual faith as affecting their perspectives, as a source of strength and support, and helping them find a purpose for their journey as mothers of children with ASD.
P1: I put everything in the hands of God. So that’s my main support, God. P2: One was always calling on God to help. Am leaving everything to God. Fortunately, I think that God prepares you for what you will be in the future. P4: I remember myself fighting more than being down. Am spiritual, I knew that whatever it is I wasn’t going to waste the pain, it was there for a reason. I wasn’t going to let it ride over me and sink me down. God knows that I have the ability to make an impact and my impact would have been wasted if I didn’t have this child. I now know why I have him, am so fulfilled at what I do that I would not trade it for anything else and I could not have discovered it if I didn’t have him. P5: I have learned to pray. My time with God is at 3:00 am in the morning. So that is why this does not affect me much.
P6: You have no choice, because number one I like long life, so I have to now open everything to God to just take control, to give me the grace to bear everything.
P10: We had the hand of God there, it was obvious. I have walked that path and I say listen I am spiritual enough to know that there is a God purpose in virtually everything. So, what I do, I do to help other parents like me.
Family member and other attitudes. Participants described experiences of poor acceptance from different members of the society, especially family and friends. Six
participants identified and described experiences where members of the society
mentioned that the child with ASD was spoilt, bad, or poorly trained. Mothers or parents were blamed for spoiling the child.
P2: People first were shouting at me and yelling at me, asking me to control my daughter as if it was something that I could do, even if I wanted to.
P3: The culture is that everybody believes since he [son with ASD] is not
handicapped he should be able to do some things and once he's not doing it right, they look down at the parents like maybe you did not train him or he is a spoilt child just because most people they do not know what it [autism] is all about. P4: Okay, at first my family didn’t understand what it was, they thought he was just spoilt, that I was indulging him a lot.
P7: People see it as bad behavior, they see me as that woman with the badly- behaved child.
P9: When they expect, your child is four years and he is not doing this, he is not doing that, [society thinks] you should spank him the more, he is being naughty, without knowing that the child is challenged.
Stigma. Eight participants identified stigmatization of the mothers or the children with ASD as a common occurrence in the Nigerian society. This stigmatization or the fear of being stigmatized was indicated to cause mothers to feel the need to protect, shield or hide their children from the public.
P1: I was stigmatized. He [husband] would tell my story to everybody that I was the one responsible for my son’s predicament.
P5: I don't want my child to be stigmatized. I don't want my child to be known as that child that something is wrong with it. So, I don't allow people to come closer. P7: People don't want to talk about it, they don't want it to look like there is
something wrong with the gene; there is something in the family line. The fear of what people would say force you to keep the child indoors. The stigma is still there.
P8: I didn’t really get any support from friends, some of them wouldn't even want your child to play with theirs; they think your child has a problem. So, if you tell them you are coming over they are asking you: are you coming with your child? Some parents in Nigeria here go as far as locking that child in a room, [because] they don't want to be identified with that child. They are not doing it because they want to, but the society is not accepting.
P9: I try as much as possible to shield myself and my child from the eyes of people. I don't take him out so much. I shield him from the public because the public don’t understand him. People will be looking at him, “oh, is this little one too mad, is he mad?
P10: You have the deep cultural superstition, we have a really stigmatizing society where people hide the children because you don't want anybody to know. You know people can start avoiding you, people start gossiping you.