Lack of Recognition for ADHD as Significant Disorder Increases Parental Stress
As the new school year begins, a survey conducted by the Centre of ADHD Awareness finds that when parents were asked to define their levels of stress, they indicated that dealing with their child’s behavioral challenges was the most stressful.
“This was totally expected,” says Heidi Bernhardt, a mother of three grown children with ADHD, “however, the real shocker this survey revealed was that the stigma and misunderstandings of ADHD that parents had to deal with was reported to be just slightly less stressful. Interactions with the school system, and difficulty accessing treatment other than medication, came in a close third and fourth as top stressors to parents.”
Bernhardt described comments regarding parents’ experiences with the lack of understanding by the public, as well the school systems across the country as “heart-wrenching.” “These survey results clearly indicate that while the condition in itself causes considerable stress to parents of children with ADHD, the lack of recognition of the disorder as a ‘real’ and significantly impairing disorder, increases the stress to an overwhelming level”.
More than half of the parents surveyed were not satisfied with the help their child is receiving at school, nor the knowledge that teachers and principals are perceived to have about ADHD. In addition, 75% of parents reported negative feeling when asked to describe their experience with the school system their child attends. Jo Anne Sieppert, who took the survey stated that, “the teacher’s level of knowledge and understanding made all the difference in the world. It often determined my son’s level of success, if his classmates accepted him, and if he was going to generally have a good experience that school year”.
Parents reported that only half of their children with ADHD were receiving assistance with their associated learning difficulties, even though their impairments were reported as significant. When asked to indicate where their children experienced difficulties at school, 92% stated staying focused, 85% indicated completing school work, 82% indicated executive functioning and organization (including time management and problem solving), and 81% listed behavior issues and impulsivity. Additionally, less than half of parents felt they had knowledge about their child’s rights when it came to the school system. A majority of parents expressed feeling frustrated by schools that do not recognize ADHD, with some describing the child’s experiences as “tumultuous”, and “the worst time in our family’s life”.
Bernhardt cautions that the message is not one of blame. “Students with ADHD can be quite a challenge for the teacher, the principal and the entire school. The lack of recognition that this disorder can hugely impact learning has resulted in a void of training and support for educators, who deal with students with ADHD on a daily basis. When we ignore students’ special education needs, it not only impacts that child and family, but the teacher, administrator and the entire class. This situation is such a shame, especially when current research, on appropriate classroom accommodations and strategies, is now easily available.”
School is not the only area parents have to be stressed about
Long wait times for comprehensive assessments and treatments, as well as difficulty accessing information about the disorder, were also flagged to be of significant concern.
Fifty-five percent of parents surveyed felt they did not receive adequate information about ADHD from their physician. Likewise, half of parents stated they do not receive any help from the physician on navigating the school system or advocating for their child within the school system.
When asked if their child had a psycho-educational assessment done, which assists in the understanding of a child’s learning impairments, only 59% indicated yes, and of those a staggering 59% indicated they paid to have the assessment done privately, at the cost of up to $3,000. Parents are usually forced to go this route due to long wait times or the inaccessibility of having the tests done through the school. Interestingly, 56% of those who had assessments done, indicated a wait time of 6 months or less which strongly correlates to those who had the testing conducted privately. Parents who cannot afford this additional cost are often unable to access such an assessment, or forced to wait years. In terms of assessment and diagnosis, 27% of respondents said their children waited more than one year for an ADHD assessment from a qualified medication professional. Of those diagnosed, the majority were diagnosed by either a pediatrician or a psychiatrist who specializes in children/adolescents. Only 8.7% were diagnosed by a family doctor.
Other notable stresses on the family, that respondents of the survey spoke about, was the lack of accessibility and the cost of treatments. It’s worth noting that treatment options, other than medication (which should never be the only treatment in a comprehensive treatment plan) are very difficult to access due to their scarcity.
“This survey confirms what I hear in my practice on a daily basis; the level of stress that parents and families experience with ADHD is tremendous. The impact of ADHD is certainly significant at school, but also well beyond school” states Dr. Kenny Handelman, psychiatrist and expert in ADHD.” Stress and frustration were the common theme of those parents surveyed, as they are trying to obtain professional assessments, comprehensive treatment, and support from the school system for their child.