Recently I had a discussion with a mom whose six-year old son is struggling emotionally and socially. An educational psychologist who has done play therapy with her son claims it is not an Autism Spectrum Disorder, but the mom says: “I really see so many of the Asperger’s traits in him. I know it might just be a label, but somehow it makes me feel better to have an “explanation” as to the way he acts, which is so different compared to my eldest and my neighbour’s kids.”
Diagnosing an Autism Spectrum Disorder appears to be fraught with contradiction and confusion and—for a parent, teacher or other layperson— it can be difficult to make sense of it all. Even the statistics seem at odds with each other. Fairly recently the estimates for Asperger’s Syndrome ranged at 20-25 per 10,000 (Bauer), but the latest official figures* state that 1 in 88 children have an Autism Spectrum Disorder (ASD). Every year there seems to be an ever-increasing percentage of children diagnosed with Asperger’s in our mainstream school. Many children are misdiagnosed or—what I think of as—half diagnosed (the rather inconclusive statement that the child shows some ‘features of Autism’). As a parent it feels a little like walking through an obstacle course with a blindfold on.
Here are some thoughts as to why this confusion and contradiction exists:
Subjectivity in the ASD Diagnostic Processes
Experts agree that to come to a correct diagnosis of ASD requires various tools, such as observation, interviewing parents and clinical experiences, preferably done by a team of specialists. Dr JC Lombard, who spoke at a recent Asperger’s conference I attended, said that, in her experience, informal observation is more important than completing a formal checklist. There is therefore a large degree of subjectivity in the diagnostic process.
Only clinicians (Developmental Paediatricians, Paediatric Neurologist, Child Psychiatrist) can make an official diagnosis. However, in South Africa—with its limited resources—those in the autism field (who are not clinicians) may get around this problem by stating rather vaguely that the child “displays autistic traits,” or that there are “signs of autism”.
ASD is a Spectrum and everyone is Different
Asperger’s falls on the mild side of the Autism Spectrum and can be difficult to pin down. A problem with correctly diagnosing this neuro-developmental disorder is that it presents differently in each individual. The latest thinking, for instance, is that girls have different—and often more subtle—characteristics than boys and are therefore going undiagnosed.
ASD often presents with (or as) another Condition
ASD’s can show up with other aspects such as depression, anxiety or concentration issues. This may be one of the reasons children are misdiagnosed or undiagnosed. One mom wrote to me: “I have an 18 year old son who in February this year was diagnosed as having Asperger’s Syndrome (and not ADHD, epilepsy or depression as previously diagnosed). It has been a journey over the past 13 years, exploding mid last year and just not ending until finally buttoning down the condition in February.”
Why is a correct ASD Diagnosis Important?
Getting a correct diagnosis is important because it gives direction and ensures that the child and parents have access to the treatment and support they need.
As a parent, it has allowed me to adjust my own attitude and expectations of my daughter and deal with her in a gentler way. Similarly, I have felt better equipped to interact with teachers and point out positive ways in which they could deal with her. One teacher told me that it helped her greatly to understand that Ashlyn’s meltdowns were caused by her sense of being overwhelmed, and not out of manipulative behaviour.
I believe it is also important for the child (especially when they reach adolescence and young adulthood) to understand that their struggles have an explanation, and that they are not alone. They may be ‘wired differently’ but they are in no way less than anybody else.
What I don’t like about the ASD Diagnosis
Occasionally I have experienced the diagnosis in a negative way too: – when it limits my view of my child with all her incredible strengths and complexity; when I don’t expect enough of her or don’t push her hard enough, and make too many allowances for her; when others treat her as different or as lacking in potential; when I sometimes sense her ‘playing the Asperger’s role’ to suit her purposes.
Ultimately I have come to realise that my child is a wonderful, unique individual. Dr Tony Attwood puts it well, when he says:
“Regardless of having a diagnosis of Asperger’s Syndrome, your child is still the same person that you have known and loved from birth. Though you may not be an expert on this condition, you are an expert on your own child.”
I need to guard against the diagnosis becoming a label, which boxes her in and limits her potential. For Ashlyn and other children, diagnosed or undiagnosed, only the sky should be the limit.
*Centre for Disease Control