Ann Bauer’s continuing series in Salon about her adult son’s autism, while not perhaps educational, is still valuable to read. I find myself drawn to it because her son’s troubles mirror a small but significant percentage of my own clients’ experiences, a decompensation that I find clinically fascinating and heart-wrenching to watch families go through.
I would invite the individuals jumping on Mrs. Bauer’s latest piece’s lack of reporting to calm down. Reading both this and her previous works, it is clear that while they contain some advocacy, their focus is on sharing the pain and anguish parents of children with autism feel for their child. These are self-reflective essays, not reported pieces using anecdotal hooks. And yes, that entails an element of narcissim; this doesn’t make them unhealthy, or lacking in value.
Answering the question “Why isn’t there data included in this piece” is really quite simple: it’s not really out there, and when it is, it’s more qualitative than quantitative. Even the “standardized” measures for autism contain a high degree of subjectivity. The development of interventions for autism – and no, Greenspan’s method (which is excellent) is not meant to “cure” autism but to teach parents and children to cope and adapt with the differences it entails – are focused on early to young childhood (hence the name “Floortime” for Greenspan’s method!), and appropriately so. The bottom line is that for individuals Andrew’s age, many of the interventions we tout today simply did not exist and those that did were not widely promulgated. Some states still institutionalize children with severe autism rather than provide outpatient or behavioral treatment.
Given the highly variable nature autism can take in each child, there is no one intervention method that works. Those of us who live with or work day in and day out with children and young adults with autism, are dealing with individuals whose developmental disability encompasses difficulties in self-regulation, processing, language, and social skills. For a small percentage, that means behaviors that are violent or endangering. And, for certain high-functioning individuals, that can mean actions that are criminal. After all, you’re asking people who have difficulty relating to others in empathic ways and regulating their own impulses to consider the results of their actions on others; this simply doesn’t make sense unless that individual has first been helped to develop coping mechanisms that allow them to do so within the context of their autism! In the case of Mrs. Bauer’s son, those methods would largely have been non-existent during his time in school.
I’ve been working in behavioral and mental health crisis intervention with children and young adults with autism for eight years now. At any given time, I work with about 30 individuals with autism, ranging from severely impaired to very mildly so. I can honestly say that at any given time, approximately 10% of those individuals are experiencing a spate of behaviors that involve violence, extreme agitation, and a loss of previously-demonstrated abilities. For the more severely impaired individuals, this is frightening to behold. In the two extremely otherwise competent individuals I’ve seen this happen in, their behaviors resembled nothing so much as anti-social personality disorder. To date, they were all males, though one colleague has a female experiencing the same thing. We don’t know why this occurs. My theory is that hormonal imbalance has something to do with it; research is simply not available at this time.
One thing we cannot do is forget that behaviors are a form of communication. They do not occur in an irrational or illogical way for the individual demonstrating them. It is our responsibility to evaluate everything happening around the individual to determine what kind of antecedents could have provoked, triggered, or inspired the behavior. Take, for example, when Andrew Bauer clutched his mother’s hands and said “I could kill you.” I would bet even money that was a warning and a plea for help, an attempt to connect to his mother, rather than a threat. But his affect, flattened by his autism and the drugs, could easily have led to misinterpretation. We must also never forget that the mere diagnosis of autism cannot rule out the co-morbidity of mental illness. I’ve worked with individuals with both autism and schizophrenia, with bipolar disorder, and so on. Depression occurs in people with developmental disabilities at an astonishing rate.
On a professional level, I find myself curious about these group homes and other programs Andrew Bauer has attended. They seem to be... haphazard, at best. What state is this? How are its developmental services organized? Where are the developmental professionals in all this?
I would invite the individuals jumping on Mrs. Bauer’s latest piece’s lack of reporting to calm down. Reading both this and her previous works, it is clear that while they contain some advocacy, their focus is on sharing the pain and anguish parents of children with autism feel for their child. These are self-reflective essays, not reported pieces using anecdotal hooks. And yes, that entails an element of narcissim; this doesn’t make them unhealthy, or lacking in value.
Answering the question “Why isn’t there data included in this piece” is really quite simple: it’s not really out there, and when it is, it’s more qualitative than quantitative. Even the “standardized” measures for autism contain a high degree of subjectivity. The development of interventions for autism – and no, Greenspan’s method (which is excellent) is not meant to “cure” autism but to teach parents and children to cope and adapt with the differences it entails – are focused on early to young childhood (hence the name “Floortime” for Greenspan’s method!), and appropriately so. The bottom line is that for individuals Andrew’s age, many of the interventions we tout today simply did not exist and those that did were not widely promulgated. Some states still institutionalize children with severe autism rather than provide outpatient or behavioral treatment.
Given the highly variable nature autism can take in each child, there is no one intervention method that works. Those of us who live with or work day in and day out with children and young adults with autism, are dealing with individuals whose developmental disability encompasses difficulties in self-regulation, processing, language, and social skills. For a small percentage, that means behaviors that are violent or endangering. And, for certain high-functioning individuals, that can mean actions that are criminal. After all, you’re asking people who have difficulty relating to others in empathic ways and regulating their own impulses to consider the results of their actions on others; this simply doesn’t make sense unless that individual has first been helped to develop coping mechanisms that allow them to do so within the context of their autism! In the case of Mrs. Bauer’s son, those methods would largely have been non-existent during his time in school.
I’ve been working in behavioral and mental health crisis intervention with children and young adults with autism for eight years now. At any given time, I work with about 30 individuals with autism, ranging from severely impaired to very mildly so. I can honestly say that at any given time, approximately 10% of those individuals are experiencing a spate of behaviors that involve violence, extreme agitation, and a loss of previously-demonstrated abilities. For the more severely impaired individuals, this is frightening to behold. In the two extremely otherwise competent individuals I’ve seen this happen in, their behaviors resembled nothing so much as anti-social personality disorder. To date, they were all males, though one colleague has a female experiencing the same thing. We don’t know why this occurs. My theory is that hormonal imbalance has something to do with it; research is simply not available at this time.
One thing we cannot do is forget that behaviors are a form of communication. They do not occur in an irrational or illogical way for the individual demonstrating them. It is our responsibility to evaluate everything happening around the individual to determine what kind of antecedents could have provoked, triggered, or inspired the behavior. Take, for example, when Andrew Bauer clutched his mother’s hands and said “I could kill you.” I would bet even money that was a warning and a plea for help, an attempt to connect to his mother, rather than a threat. But his affect, flattened by his autism and the drugs, could easily have led to misinterpretation. We must also never forget that the mere diagnosis of autism cannot rule out the co-morbidity of mental illness. I’ve worked with individuals with both autism and schizophrenia, with bipolar disorder, and so on. Depression occurs in people with developmental disabilities at an astonishing rate.
On a professional level, I find myself curious about these group homes and other programs Andrew Bauer has attended. They seem to be... haphazard, at best. What state is this? How are its developmental services organized? Where are the developmental professionals in all this?
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Joan Walsh
Kerry Lauerman
Salon.com
Comments
My niece has mild Autism and (at 5) seems to be progressing with slight delay in her social skills. I'm hoping that being a girl is going to protect her from becoming violent.
Finding housing is a particular torture. The best option for my autistic brother (age 50) is a place in the town housing for the elderly. Stick a youngish autistic man in with a bunch of gossping old ladies? Yep, so far, it seems to be the best option.
Despite my parents working on his housing for twenty, yes, TWENTY years, he's just now beginning to become a priority for service providers and this is because my father is over 80 and my mother close. My parents have sued the State (Massachusetts) and appealed. Massachusetts is one of the better states for services to the handicapped.
My parents know a lot of families with autistic children in their 50s, none have found a housing solution that I would consider good. Some still have their children living at home, others have found housing that is adequate. These are all people who have never been violent or have had criminal problems. The few who have are either are mostly in jail or psychiatric hospitals.