Autistic Immigrants
Autism, Identity, and Belonging
In a March post on Medium, autistic author Ophelia Truitt called attention to what she called a hierarchy problem in the autistic community. Like many other autistic people, her experience with neurotypical people has been difficult. However, she was surprised to find out that much of the pushback she experienced about her autism had come from others in the autistic community. She pointed out that the hierarchy within this community casts doubt on whether the newly identified individuals are truly autistic. This determination amounts to a question of when a person is “autistic” enough to really belong?
Autistic Immigration and the Question of Belonging
Those of us who have come to understand our own autism later in life are akin to being immigrants to this new world. And as has historically been the case with matters of immigration, newcomers are not always greeted with open arms.
The question of what criteria define autism is one that has been debated almost from the start. A lot of individuals and families touched by their own long struggles raise concerns about the new autistic arrivals in much the same way that immigrants are frequently viewed as a threat by a country’s native-born citizens.
Part of the problem is, there is not really a reliable conceptualization of what constitutes autism. Because there is no “typical” autistic person, defining the parameters of the condition results in a nosology so overly broad it amounts to trapping nothing and everything. One prominent autism researcher, Dr. Uta Frith, argued that the diagnostic criteria for the Autism Spectrum have been so stretched in the name of inclusivity that it has come to the point of collapse.
If this is the case, it may be because we have some hazy concepts and stereotypes guiding us.
The Historical Legacy of Autism
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Let’s start with the historical shadow that still clouds how autism is perceived. It’s easy to forget that Eugen Bleuler coined the term “autism” to describe a symptom of schizophrenia marked by a pathological self-absorption, detachment from external reality, and reduced responsiveness to social/environmental demands. After World War II, Johns Hopkins psychiatrist Leo Kanner retained the term but radically changed its meaning. Where it once referred to a symptom of childhood schizophrenia, Kanner now used “autism” to describe a distinct congenital deviation in a child’s social and affective development.
Kanner’s hard turn from autism as a symptom to autism as a condition heralded decades of diagnostic confusion. Autism was now a medical condition to be diagnosed rather than simply observed as a characteristic of severe mental illness. As with any human malady presenting in a heterogenous fashion, autism has never been cooperative in our pursuit of its identity. Arguably, Kanner’s conceptual transformation perpetuated an undercurrent belief that autism needs to cause a distinct impairment before a person is identified as having it. This can manifest in a stereotypical understanding of what autism is and can make the autistic migrant experience an exclusionary one. Those who don’t clearly fit the stereotype can be looked upon as undesirable additions to the new world of autism by families that have struggled to help their child navigate a world that is discriminatory and exclusive.
Impairment and Support Needs Are Contextual
Currently, impairment is coded into the DSM Autism Spectrum. It is measured on a three-level scale by the degree of support an individual needs: very substantial support, substantial support, and simply requiring support. Children in the first two levels have clearly earned their place in the Spectrum. Parents who have engaged in the battle to understand, accommodate, and support their offspring can be likened to established citizens who viewed everyone coming from abroad as threats to their hard-won livelihoods.
However, there are caveats and these appear to have led to what Dr. Frith has seen as a collapse of the Spectrum. Both impairment and support tend to be contextual because individual needs are not necessarily static over time and circumstances. Disability and support needs are evaluated across multiple dimensions: language, sensory function, executive control, adaptive functioning and social cognition. What is impairing now might be a manageable inconvenience later in a person’s life. People can learn and autism does not negate that response entirely.
Masking As Acculturation
Take masking for instance. Dr. Frith does not support its existence but masking is an adaptive function that allows an individual to accommodate challenges that arise when the neurotypical and autistic worlds interact. The effectiveness of masking is contingent upon some degree of social cognition. Otherwise, a person would not be responding with often emotionally-exhausting adaptive responses that do not come naturally. The degree of success one has in hiding their autism is pertinent to the questions of disability and support. An immigrant must negotiate questions of culture, social interaction and sometimes an entirely new language. Masking is acculturation to a world where a different neurologic and developmental path dominate. Acculturation and masking are both the product of experience.
Finally, there is the question of how a growing knowledge base can lead to changing conceptualizations of the object being studied. We know more than we did a decade ago when the DSM-5 with its Spectrum formulation was published. The concept of an Autism Spectrum was a product of growing scientific awareness that autistic people presented in such a wide variety of ways that precise identification of different “types” was not possible. Nature doesn’t draw clear lines; it leans toward smudges that roughly articulate but can never precisely define a boundary. When do red and white become pink? It has been my clinical experience that diagnosis defines insurance reimbursement more than it does treatment. It certainly does not define a person but may help to describe one.
Autistic Immigration
As with immigration, the reception of newly identified arrivals to the Spectrum has not always been a warm one. I am certain that when my ancestors first stumbled off their ships after a long voyage from Europe, the Indigenous people already present were not particularly receptive to this immigrant experience. Over time, I have heard my own family talk in a derogatory manner about newer immigrants from Latin America, Asia and Africa. Folks who immigrated earlier tend to have concerns that the newcomers are going to push them aside. We continue to hear it today.
The hierarchy problem is a human one almost to be expected. We autistic immigrants will find our place. Our best hope for the future is that our recent immigrants greet those who come after them with open arms and help them assimilate.
