As a young child, Jayne was consumed by Pokemon, the collectible card game of animated creatures originated in Japan. It was no mere pastime, but an all-encompassing interest that engaged her considerable vocabulary to the exclusion of all other age-appropriate attachments or interests. And it was accompanied by other troubling signs: an inability to make eye contact with others, to engage with peers in a reciprocal fashion, and to make friends.
As Jayne matured, her social isolation deepened, as did the uncommon and all-consuming nature of her interests. As a teen, she developed an exhaustive knowledge about everything related to a fast-food chain in the state where she resides. At an age when conformity to the norm is at a premium and castigation of those who deviate is most severe, Jayne inhabits an island of her own inaccessible idiosyncrasy.
As little as 14 years ago, she also may have had difficulty getting a psychiatric diagnosis that fit. Too verbal and intellectually adept for autism, she was liable to get a diagnosis of obsessive-compulsive disorder (OCD), a personality disorder, or even schizophrenia.
Today, Jayne's primary condition is recognized as Aspergers, a close relative of autism distinguished by severe and sustained impairment in social interaction, but without the clinically significant delay in language acquisition characteristic of autism; also distinctive is the presence of restrictive, highly idiosyncratic interests.
First introduced in DSM-IV in 1994, Aspergers is still prone to being overlooked or labeled as something else. As in the case of Jayne, OCD is often diagnosed – she exhibits some of those features and receives medication for them. But overlooked before she was diagnosed with Aspergers was the severe and sustained impairment in social interaction, dating back to her earliest years.
Even a decade ago people had a good understanding about autism, but these “Aspergers-like” children fell between the cracks. They didn't fall neatly into any psychiatric diagnosis, and they didn't look like they had autism because their language was so well developed. People knew they were odd, but no one knew what to do with them. As a clinician in child mental health, it has been a great relief to have this diagnosis as something you can hang your hat on. These children have tremendous needs that must be met by schools and the medical community.
They Talk Before They Walk—
These are children who talk before they walk. Words are their lifeline, and from a research perspective, that's a critical observation that captures the difference from autism.
The Aspergers description went “underground” for several decades, but during an international field trial of autism conducted by Volkmar and others in the 1980s, a number of clients consistently surfaced, across cultures and languages, who matched the definition. From this emerged a consensus definition for inclusion of Aspergers in DSM-IV in 1994.
Now the criteria are in need of refinement and will likely be updated in the next edition of DSM. Chief among the difficulties with the current criteria is dependence upon the absence of criteria normally present in autism—namely, the lack of delay in acquisition of language at age 2 or 3—and the stipulation that if autism cannot be ruled out, it should be the diagnosis of choice.
While Aspergers individuals do not lack vocabulary or speech production and are often precocious in this area, they have trouble fitting language into context and lack other skills requiring intuition of social context. They may have a variety of language weaknesses as toddlers including delayed onset of speech, rattling on in tangential ways, and speech articulation problems. But they are of a different quality than those found in high-functioning autism, such as mutism or very severe deficits in vocabulary.
Clinicians say a client's history of language acquisition is difficult enough to ascertain when a patient first presents at the age of 10 or 12, let alone as an adult. When you see these children in the clinic, it feels somewhat artificial to make a distinction just because they had an early language delay.
If they had a language delay at age 3 or 4, I am forced by DSM to call it autism, and if they didn't and have a normal IQ, to call it Aspergers. That's not a problem because those who have the language delay often continue to have signs of autism. And often, the more severe cases end up being called autism and the less severe cases are Aspergers. But not always, and it can seem arbitrary eight or nine years down the road. If the family is overwhelmed, the least of their concerns is remembering exactly when the child first uttered single words and phrases.
Confusion over diagnosis, combined with a relative paucity of research, has resulted in extremely wide-ranging estimates of prevalence of Asperger's—between 3 and 48 per 10,000. Nonetheless, there are real differences between Aspergers and autism, and they need to be better spelled out.
So what should clinicians look for?
In making the diagnosis, clinicians should look for three bell-ringer traits. These are impaired social interactions, especially difficulty with social reciprocity; idiosyncratic interests or activities; and odd, mechanical, or socially inappropriate speech patterns.
As with Jayne, treatment may involve medication of secondary symptoms such as obsessive-compulsive tendencies or attention-deficit problems; antidepressants, anxiolytics, or atypical antipsychotic medications may be useful.
Social-skills training targeted at teaching specific, often rudimentary social rules and protocols is the other component of treatment. Social algorithms—how to respond to different social situations and verbal cues—allow patients with Aspergers to learn conversation and other social skills cognitively so they can approximate an intuitive sense of how to behave.
In contrast to autism, you want to use the verbal capacities of Aspergers clients as a pathway to treatment.
The long-term prognosis is not necessarily bleak; the intensity of interest and volume of knowledge that clients may bring to idiosyncratic subjects can make them highly valued workers as adults. Along a continuum the symptoms of Aspergers can at some point “fade to normal,” and there are those in the community of people with autism-spectrum disorders who resist being labeled as disordered. For young people, especially teenagers, the “different-ness” they experience can be traumatic.
Even when these children don't meet criteria for depression, they are very much at risk for demoralization. In middle school especially they can experience self-hatred and anger as they try to make friends and find more and more that people aren't interested in their favorite topics and aren't patient with their social awkwardness.
So there is a place in treatment for supportive therapy and psycho-education. Sometimes I will give them things to read about Aspergers, and they are incredibly relieved to know there is a disorder, and that other people have it – and have found a way to lead happy lives.
My Aspergers Child: Preventing Meltdowns and Tantrums in Aspergers Children
