It was 13 years ago that my son Charlie was officially diagnosed with autism after some tense and torrid days of observation and questions by a team including a psychologist, a speech therapist, an occupational therapist, a social worker, an audiologist, a nurse at the Child Development Clinic of the Minneapolis Children’s Hospital. A smaller team from the St. Paul Public Schools District said he had a definite speech delay but no one likes to be the bearer of tough news and we all waited for the word from the clinic team. But Charlie’s delays were evident: At two, he said one sound (“dah”) and showed no sign of understanding any language, including his name. His differences had first been noted by the staff at his daycare at the university where I held my first tenure track job and while I most grudgingly heeded their requests to have Charlie evaluated, to this day we are grateful for their urging.
Being diagnosed with autism at the age of two is far more common today, though the average age of diagnosis is after 4 for autism and after 6 for Asperger’s Syndrome (those with the latter tend to test with higher IQs than average and not to have the severe speech disability that Charlie has). There is certainly far more public awareness about autism and more information accessible via the web. Easter Seals, an organization that has long provided services for individuals with disabilities, has an online diagnostic tool that provides developmental milestone screening and can help link families with local providers. There is still no biological test for autism and a diagnosis is made on the basis of the observations of specialists.
An EEG Test For Autism Diagnosis?
Finding such a biomarker remains a goal and researchers at Boston’s Children Hospital say that EEG traces could provide such a diagnostic test. As reported in the BBC, a BMC Medicine study says that EEG tests “clearly distinguished” autistic children in a trial that included 1,000 children. Scientists found 33 specific EEG patterns that indeed seem to be linked to autism, in children ages 2 to 12.
To test their findings, the researchers repeated their analysis ten times; they found that, about 90 percent of the time, EEG patterns correctly identified autistic children. They are now trying to see if children with Asperger’s Syndrome have different EEG results.
Having recently been in touch with a family considering having an older child evaluated for autism, I would say that such a test would provide some relief and more certainty for families and practitioners. Autism is considered a spectrum condition with individuals presenting with different degrees of severity of impairments in the speech and communication, social interactions and cognitive functioning.
Even though Charlie’s diagnosis is autism, plain and simple, and he has very limited speech (his typical and few utterances are about two to five words long), he is far more intelligent than he ever tests as. It does not help that the tests tend to rely heavily on language. Charlie, highly aware that he is being tested and therefore stressed, tends to test very poorly — he gets progress reports from school and it was only in the past few years that he started to have markings of “SP” (“some progress”) instead of strings of “NP” (“no progress”).
Freezer Failure Leads to Loss of Autism Brain Bank At Harvard University
Earlier this month, a freezer failure led to the loss of 150 brains of autistic individuals that had been donated for research to a brain bank at Harvard University. As Dr. Gerald D. Fischbach, a professor emeritus at Columbia and director of life sciences at the Simons Foundation, tells the New York Times, human tissue is the “gold standard for research” needed to answer “some very basic questions,” such as those about the genetics of autism. Such research can help not only to understand autism, but to develop diagnostic tests and even treatments such as medications.
Charlie takes quite a few medications and while some families with children who are not as severe have numerous, understandable reservations about such, the fact is that the medications have played a huge part — along with Charlie’s teachers and therapists — with keeping him out of an institution and living with us. Charlie does not have documented seizures but an anti-epileptic medication has proved helpful. When he has what we call “behavior storms” involving quaking legs, head-banging, an urge to flee (evinced in running pell-mell away from wherever he is), an urgent need for deep pressure — some kind of neurological activity seems to be going on but Charlie does not have the language to tell us. We have not yet done it but I think it behooves us to arrange that his brain be donated to research.
In the meantime, we have been enjoying good summer days together of bike-riding, walking, hanging around the house and listening to music — happy days as a family that no one would have dared to predict would be our lot 13 years ago, in a quiet room in Minneapolis.
Related Care2 Coverage
Photo of the author's son Charlie getting an EEG (not for the test described in this post) in May of 2009 by the author