Infraestructura, regulación, competencia y crecimiento

All of the caregivers interviewed commented on the cause of autism within the context of their experience. They remarked that their theorization of ASD is directly connected to their understanding (or lack of understanding) of the diagnosis. For some caregivers, the unfamiliarly and lack of knowledge about autism has fueled some interesting ideas surrounding what may have caused

80

autism, ranging from preternatural to natural explanations. For instance, infidelity or wrongdoing by a parent was noted as a reason for someone having an autistic child, Dorsey explained:

My ex-wife feels partly responsible for Dillon autism, and I think it makes some sense {long pause}. She cheated on me a few times before becoming pregnant with, Dillon this autism thing must be God’s penance for her horning me [her unfaithfulness].

Nia had a very relatable story:

God gave me one piece ah punishment, and I must live with the consequent. I have not spoken to many people about this obviously because I am embarrassed but while I was with Lynn (not her real name) father I was seeing someone else. He never found out but God was watching me, and now I have to deal with Lynn behaviours, as a result, ah bwoy ah [an expression to show frustration].

A few caregivers commented on other preternatural factors as a possible cause of Autism. In their opinion, the likelihood of autism is directly connected to a manifestation of voodoo locally referred to as “Obeah” inflicted on them by an enemy for varied reasons. Ayanna a mother of two said:

I believe someone pass hand [Obeah] on me and my children some people in the community do not like me and found a way to hurt me and my children.

Khadija disclosed:

I do not know if this is true, but I was told by Peter (not his real name) mother that someone “do her” [Obeah] while she was pregnant. She told me she got really sick three months into her pregnancy after she accidentally stepped on something in her yard. She believed it was put

81

there by someone in the village to bring a curse on her, but instead, it was passed on to her unborn child. This is what I was told I don’t know if it is the truth!

Caregivers’ attribution of autism to preternatural focuses may be connected to their understanding of mental illness which is still taboo on the island and which is sometimes connected to curses and possession by spirits from a past life, and deceased family members as an explanation for the mental health manifestation. Other participants commented on natural or biomedical factors as perceived causes of autism including vaccination, hereditary or genetics, exposure to chemicals and infections, and other environmental factors. Others could not come to a definitive or single rationale for an autism diagnosis, for instance, Dante spoke extensively about measles, mumps, and rubella (MMR) vaccination and possibly genetics as the basis for an ASD diagnosis for his children:

Of course, you would have heard about the MMR. Sometimes I am kind of inclined to want to go that direction. My second son used to speak at about 1 year old calling his older brother by his name; well not fully pronounced, and then of course he started to get his shots and so on, and then all of a sudden, the name calling just dried up, it just dried up, it stopped, you know. Then I heard that my cousin had a son also with autism too, then you wonder if there is some hereditary factors, something genetic. In my boy’s case, it may be both; I think there is still a lot of debate, I am unsure on the cause.

Similarly, Malik a father of an 8-year-old male, was unsure on the cause of autism “it could be genetics, it could be the vaccination, and it could be any “dam” thing. I do not know what the cause is but what I am sure about is that Shane (not his real name) is different” [the participant appears to be upset]. Delphine was much more confident that the case of autism in her son was directly linked to medication she was prescribed during her pregnancy and subsequent MMR vaccination:

82

I am 100% convinced that the medication I took while pregnant hurt Billy (not his real name) and the Mumps vaccination he was given did not help the situation at all!

On the contrary, Candyce, a caregiver for her nephew was suspicious about MMR being the cause of autism and offered her opinion based on her research on the epidemiology of autism being related to the child’s parents’ parental age, the father in particular:

Of course, there is this thing about the MMR vaccine, which I do not really believe. Somehow, I do not believe that…I mean, I have done quite a bit of research on my own. One of the things, I do not know if it is true or not but, because my sister-in-law was 41 when she had him and his dad at the time was 59. So I know some of the research says, especially if the father is older, you know, that has some kind of bearing on the autistic thing. In my nephew case, I specifically believe it is age- related.

An emotional Cynthia, a mother and caregiver of an adult child, formally diagnosed with ASD, made a startling revelation on what she believed caused autism in her son. Cynthia had lived in North America for an extended period and disclosed that she had received clinical and social support for her son but despite having access to these early supports while in North America, she remained resolute in her belief on the cause of autism in her son. She said:

Cynthia: I am being honest with you, I actually say it is the doctors that ruin my baby.

LE: The doctors ruin him? What do you mean?

Cynthia: Yes, the reason why I say that they give me this epidural the time I had to make Kevin (not his real name) and all my labour pain just cut. I was on this bed there a whole 6 hours waiting, just waiting for the doctor to come. Next thing, a doctor came out from nowhere and just

83

said, what am I doing here? And then they took me to the theatre and cut me to take him out.

LE: Uh hun, can you tell me how this connects to him being “ruined” as you stated?

Cynthia: Yes, from that epidural and all the other medication they put me on and never explained to me. Even while I was breastfeeding him, I was on medication and seeing the doctors eh heh! {Breathe a sigh of relief} Lord have his mercy, {her hands in the air, gazing up to the skies, emotional} so I do not know if it damages his brain, you understand? LE: Uh hun go ahead, tell me more

Cynthia: These doctors are criminals they never educate me. Then I found out; the medication is like drugs! Ohh! Almost as cocaine and that it can affect the child's brain, so and then I had to stop breastfeeding him and put him on the formula. Then they try telling me different when I confronted them, making me look like I crazy but it was too late Kevin was already damaged.

Cynthia experience highlights two essential points related to caregiver or parent perception on the cause of autism. Firstly, is that their understanding of autism is often context based and might be restricted to what they know or don’t know about autism which is indeed a broad and complex neurodevelopmental disorder. Secondly, it is apparent from Cynthia's story that caregiver despite having access to medical and clinical resources wants to be made aware early and may benefit from a clear and straightforward education and treatment plan that addresses the etiology of the child diagnosis.

Other participants spoke about their thoughts related to the cause of autism. Although Khadija retold the account on the preternatural explanation of autism in relation to her cousin as noted earlier, she also wondered about other environmental causes:

Peter was speaking you know. He was speaking throughout when he was one and two years old, and at that time he had nice long hair, and

84

then they cut his hair before he begun preschool, and then I realized he just shut down; he just stopped talking. And I was like, why you’re not speaking? Now you reach school for you to excel and you are not speaking. Perhaps it is because of the haircut

Indeed Dorsey also spoke about “hair cutting” as a possible cause for ASD, “Dillon is almost 14 years now, but I remember when he was two or three he was very active and outgoing, he had his little struggles here and there, but he was a good kid, but after his first haircut everything changed, sometimes I wonder if that can be the cause for his slowness”.The perspectives shared above indicate that caregivers’ understanding on what might be the contributing factor to the cause of autism is diverse ranging from genetic, nongenetic and environmental factors. The caregiver's conviction on the cause of autism can potentially influence the characterization, treatment and lived experiences of autistic people within their community and across Grenadian society.