I recently met one of the most interesting parents that I’ve ever interviewed. This is a mom of a 5 year-old ‘spectrum’ child seeking help because she didn’t want him to “experience the same difficulties that I had at his age.” Mom seemed quite typical to me, so I asked, “What kind of problems did you have?” She used to be obsessed with airplanes, drawing them, reading about them, thinking about them, and watching them. She didn’t have any friends, and other children didn’t understand her. She was bullied. That is why she was bringing her child to see me, so he didn’t have to suffer those same problems. I asked her when she first got a joke, and she replied that it was around when she was 18!
“You know, I am married now with 2 kids, and sometimes,” she told me, “I will be writing a check for my husband’s business and all of a sudden I will find myself thinking about airplanes, or I will see a pattern on the ceiling and I have to follow it until the end. After that, I’m fine.” After a thorough interview, It seems to me that this person was a cured Asperger’s patient! She made good eye contact, had a husband and friends, and didn’t consider her past as any deterrent to her present life.
Because I had the good fortune to work with a child psychologist for the past couple of years, I saw many ‘Aspies’ coming through our office. The main lesson that I have learned is that, just like there isn’t one kind of autism, there isn’t one kind of Asperger’s presentation.
It has been more difficult, in many ways, to help Aspies than ASD patients, because the symptoms are more vague and there isn’t necessarily a consistent medical history. Even the incidence of this disorder varies widely. According to one paper, “A 2003 review of epidemiological studies found prevalence rates ranging from 0.03 to 4.84 per 1,000, with the ratio of autism to Asperger syndrome averaging 5:1… combining this with a conservative prevalence estimate for autism of 1.3 per 1,000 suggests indirectly that the prevalence of Aspergers syndrome might be around 0.26 per 1,000… Part of the variance in estimates arises from differences in diagnostic criteria. For example, a relatively small 2007 study of 5,484 eight-year-old children in Finland found 2.9 children per 1,000 met the ICD-10 criteria for an Aspergers syndrome diagnosis , 2.7 per 1,000 for Gillberg and Gillberg criteria, 2.5 for DSM-IV, 1.6 for Szatmari et al., and 4.3 per 1,000 for the union of the four criteria. Boys seem to be at higher risk for Aspergers syndrome than girls; estimates of the sex ratio range from 1.6:1 to 4:1, using the Gillberg and Gillberg criteria.
There are several realizations that have become apparent as more patients are recognized and seek biomedical intervention. First, the diagnosis is often historical. Rather than exhibiting the usual red flags that ASD babies demonstrate, most patients are pretty routine infants and toddlers, but as the children enter preK, problems start to emerge with lack of focus, anxiety and immaturity. Parents often report that the children used to have friends, but become more and more isolated over time. Similarly, the medical history indicates that affected patients “used to make eye contact,” which diminishes over time. They become more and more fixated on singular activities and interests throughout childhood and, by adolescence, affected patients are pretty much ‘loners’ who have seen psychologists, psychiatrists and other specialists. Frequently, several medications have been tried, and patients often present on more than one medication to address focus and anxiety.
Second, not all Asperger’s patients are ‘high functioning’. Although their particular interests may make them experts in dinosaurs or bugs, they do not behave well in school, or in most social situations. Furthermore, low self esteem and anxiety can often interfere with even the most mundane situations. Parents frequently report that getting ready for school in the morning is a nightmare.
Third, autistic patients don’t outgrow ASD and then go on to become Aspies. Patients who demonstrated core problems with social isolation, repetitive movements, and social isolation as toddlers, but develop more skills and abilities towards an optimal outcome in their preteen years are recovering autistic patients, not Asperger’s individuals. This is important because regressions in ASD patients often respond to the usual biomedical interventions of G-I treatment, alleviation of allergic problems, or mitochondrial under-functioning.
Lastly, it appears that the more the affected individual is aware of their condition, the better their outcome. Anxiety is reduced and self-esteem can improve as the patient becomes more aware of why they are different from others. Many Aspies object to combining their diagnosis to the whole ‘autism spectrum’ as will be documented in the new DSM 5. Combining ASD, PDD-NOS, and Asperger’s syndrome might be a medical mistake. Is Asperger’s Syndrome a form of autism? When we combine 2 or more diagnoses that we don’t understand, couldn’t that make us twice as ignorant?
Many of these findings that we have seen clinically have been reported recently here.
The truth about Hans Asperger… from Naure