7.4 C ATEGORIES DISCLOSING THE CHARACTERISTICS OF BEING THE PARENT OF AN
7.4.1 Interaction with medical personnel and the use of medication
7.4.1.1. The diagnosis
The identification process
For many of the parents, the identification process already began in nursery school.
This is in keeping with research findings that the symptoms of ADHD appear to arise relatively early in childhood, with the mean age of onset being between three and four years old (Barkley, Fischer, Edelbrock & Smallish, 1990; Barkley, Fischer, Newby, Breen, 1988). Barkley (1998) states that most cases may develop before age seven years. Of the 21 ADHD children, 17 were diagnosed by the age of seven years. Of the remaining four children, two were diagnosed by the age of nine, and only the remaining two did not obtain a diagnosis until high school.
Brenda, Belinda, Angela, Marie, Mia, Pat, Samantha, Sandy, Beth, Gill and Dylan, and Carrie all sensed something was wrong with their child long before they got to an official diagnosis. The difference in most cases was the age at which parents began to have the sense that something was wrong. Brenda admits that even from pre- primary she thought: “My God, what is wrong with my child?” Belinda started noticing that Evan was “a different child” when he started at his first nursery school, and Angela sensed Tina was “different from when she was a small child”. Marie and Leon knew in Grade 2 already that “something should be done” for Johan. Mia feels she
“knew there was a problem from birth” with Lynn. Pat knew when John was about three-and-a-half years that “something was up”. When Claudia was a baby, Samantha could already see she was different to her brother. Sandy “sort of had a feeling” by the time Aidan was four, and Beth’s “gut feel” when Eve was a toddler
“was that all was not okay”. Even before Doug was diagnosed, Gill and Dylan
“suspected for quite a while that there was something not quite right”. In nursery school, Carrie already knew something was wrong with Luke, but nobody could tell her what was wrong.
In some cases, it took a crisis for the parents to begin the identification process.
When Conor was in Grade 0, Brenda was told that there was no way he was going to make it through to Grade 1. In Belinda’s case, she was faced with having to remove Evan from his nursery school if his behaviour did not improve. Angela felt that she had to find help when Tina was in trouble at school, and at home she was hitchhiking and disappearing for hours. Kim came home with a school report that was so shocking that Mia thought it might actually be another child’s report. For Gill, the last straw was coming home one day to find “the curtains had been pulled off the wall”.
Some of the parents who did begin the process of medical or educational assessments still experienced a period of uncertainty before a firm diagnosis was eventually made. Belinda took Evan for his first assessment at the age of four years, but he was only diagnosed at the age of six. Linda went through a period of working with speech and occupational therapists, but no one knew “what was wrong” with Ruth. Marie and Leon had Johan assessed for the first time when he was in Grade 2, but he was only diagnosed as ADHD in Grade 11. Mia took Lynn for her first assessment at age four-and-a-half, but the diagnosis of ADHD was only made when Lynn was seven. Beth had Eve assessed for the first time before she even started nursery school, but she was only officially diagnosed at age seven. Carrie “did the rounds” with Luke before he was officially diagnosed.
Having a formal diagnosis does not mean that parents won’t face difficulties in persuading teachers and family that there is something wrong with their child, or that something needs to be done for their child. Belinda ended up fighting a heartbreaking battle with the school and the psychiatrist to get Cathy onto Ritalin.
Cathy finally went onto Ritalin two years after her diagnosis.
Belinda, Michelle, Mia and Carrie all have more than one child with the disorder.
Having one child already diagnosed with ADHD did not, however, mean an easier diagnosis of the second child. Cathy was a “very unhappy child” and her “marks just dropped” before her diagnosis was made. Kim came home with a school report that was “absolutely frightening” before her diagnosis was made.
Beth, Carrie and Rose all feel they were blamed in the identification process. After Eve’s assessment at the children’s clinic, it was suggested that Beth herself needed therapy. Carrie’s “rounds” with the educational psychologists also had her and her husband being blamed and therapy was suggested for them. Rose was called a
“useless mother” by a principal and a paediatrician, and “an over-possessive older mother who didn’t really know what she was doing” by the educational psychologist.
Hearing the diagnosis
Despite the fact that over two-thirds of the participants in this study suspected that there was something wrong with their children, hearing and dealing with the diagnosis was still emotionally and intellectually difficult. Brenda feels the diagnosis had a “very big impact” on her. She did not find it a relief that Conor was diagnosed so early, but instead disliked the fact that he was being labelled as having a problem so early in life. Angela had “a huge problem” with the diagnosis, because “it’s intangible” and she feels she doesn’t understand it. Pat felt the diagnosis “was a shock”, mostly because she didn’t know anything about the disorder. Samantha felt like it “was the end of my world” and cried for days. Michelle found the diagnosis
“very overwhelming” because she realised how much work would be needed.
A number of the parents spoke of having a feeling or sense of relief. Belinda, Marie, Beth, and Gill and Dylan reported feeling relieved at knowing what is wrong. Mia and Carrie felt the relief of knowing you are right, and of having your suspicions confirmed. For Michelle and Rose there was relief in knowing that they were not causing the child’s behaviour.
There was also a feeling that once you know what is wrong, you can do something about it. Marie felt the hardest part of this “whole journey” was “not knowing” and “not being able to give it a name”. For Marie “once it had a name I could deal with it.” Gill too thought: “Thank you’. It has a name. Because when it has a name you can deal with it.”
A number of studies in the 1990s, particularly those by Biederman and colleagues strengthened the evidence of the familial nature of ADHD. Between 10% and 35% of the immediate family members of children with ADHD were found to have the disorder, with the risk to siblings of the ADHD children being approximately 32%
(Biederman, Faraone & Lapey, 1992; Biederman, Keenan & Faraone, 1990; Pauls, 1991; Welner, Welner, Stewart, Palkes & Wish, 1977). Even more striking, research has shown that if a parent has ADHD, the risk to the offspring is 57% (Biederman, Faraone, Mick, Spencer, Wilens, Kiely, Guite, Ablon, Reed & Warburton, 1995). A number of parents in this study feel there is a hereditary component to their child’s ADHD. Carrie and Brenda believe they might also have ADHD, and recognise themselves in a lot of their children’s behaviours. Pat has ADHD and takes Ritalin when necessary. In Samantha and Michelle’s case, both they and their husbands
have the disorder. Dylan was diagnosed a year after his son, and they started taking Ritalin at the same time. Rose’s husband, Mark, believes he is ADHD. Angela thinks
“there is probably a hereditary component” and notes that she has a cousin who has a son with ADHD. Linda believes that her husband and his mother both have the disorder. Marie believes her father-in-law has ADHD. Zelda believes that Karl’s father and paternal grandmother have the disorder. Sandy’s nephew has ADHD.
Beth and Michelle both believe the ADHD might also be connected to the mother’s pregnancy. This is in keeping with very early investigations into ADHD such as Shirley’s (1939) view that birth trauma was a potential cause of ADHD. Beth believes that if there is a “lot of emotional, intense stuff that happened” during the pregnancy, the chances are good the child might have ADHD. Michelle believes that having caesareans “compounded” her children’s problems, as well as the fact that both Gary and Helen were in distress at birth. Michelle believes that being “ripped out” of their
“environment” really has compounded their ADHD.
Behaviour following the diagnosis
Marie, Pat, and Zelda’s reaction to the diagnosis was to immediately start to read and learn more about the disorder, to help them make sense of it. All three had a need to gather as much information as possible. Others began to seek resources to help their children. Beth sent Eve to a counselling psychologist for therapy. Both Sandy and Michelle decided to go on a parenting course.