The PBS series on autism, Autism Now, has aired all of its segments now. The extended transcripts of interviews are available online, as well.
The series started with the sour note of a family convinced it was the vaccines, with the focus on the sacrifices that families make for autistic children (people shouldn’t be parents if they aren’t ready to put children first; parenting isn’t supposed to be a contest about who could be the biggest martyr). The focus is on Robert MacNeil’s daughter, son-in-law and grandson, who is on the spectrum. Alison MacNeil believes her son’s autism was caused by vaccines at 15 months (and is a commenter at Age of Autism); this first segment focuses on the family and how it is impacted by Nick’s autism. In the first segment, MacNeil interviewed his granddaughter about her brother, and he repeats this motif in the fifth segment, which focuses on a family whose son and brother is 21 and aging out of the educational system.
Whether these two sisters, at vastly different points in their lives, are led to discuss their fears and their frustrations or edited to suggest that their primary focus is on how their brothers’ disabilities will impact their own lives, it’s a bitter pill to swallow if you’re looking at it from the autistic person’s perspective.
Most of the segments of this series are very problematic, but other parts are overall, pretty decent. Segments 2 and 4 are the better segments, as more time is spent seeing children on the spectrum, although the narrative that MacNeil provides is about how hard it is to deal with autistic children and their needs. In the fourth segment is the brightest spot in the entire series:
“JESSE MOJICA: I am a very different person than I was before Adam was in my life. And when he was diagnosed with autism, it was a very difficult time. This is a moment where your life is changing dramatically, and you can either be broken by that, or it can take you in another direction. And where Adam took me was he made me into a better man. And he's really taught me that the true meaning of life is to love and to give of yourself and to be compassionate and to serve others. And I've met a lot of very impressive people in my life, but no one's taught me that more than my son, and I will be forever grateful to him.”
Part 4 closed on this note and it is the single best part of the entire series.
Part 5 of the PBS series on autism looks at adults with autism. Here was a prime opportunity to actually talk with autistic adults. So did they? No, not really. Not unless you consider three questions a talk. They interview the administrator for the school that Zach, an autistic adult, attends. Then MacNeil talks to the father, the mother, and the sister. What about Zach, the young man everyone is talking about? MacNeil briefly asks Zach if he likes the job he works, but that’s it. About ten seconds:
“ROBERT MACNEIL: Almost finished?
ZACH HAMRICK: Yes.
ROBERT MACNEIL: Do you like the job
?ZACH HAMRICK: Yes.
ROBERT MACNEIL: Do you find it easy, or is it hard?
ZACH HAMRICK: Yes.”
This segment comes to a fairly abrupt close with the peculiarly worded sentences:
“ROBERT MACNEIL: In the meantime, the family finds what comfort it can from the idiosyncrasies of Zach's mixed limitations and skills.And the uncanny relevance of these memorized words he is able to utter so clearly.
(SINGING)
ROBERT MACNEIL: We don't like what we don't understand. In fact, it scares us.”
In the first sentence of the closing paragraph, MacNeil reveals, in case it had somehow not been clear in the previous four segments, that this isn’t about autism and it isn’t about autistic individuals. It’s about how autistic individuals impact their families and their communities. Each segment contains extended interviews, so maybe one of those is the extended interview with Zach on how he feels about his autism, his difficulties, and his triumphs? Nope. Instead there are two extended interviews, one with the Zach’s school administrator and one with Peter Gerhardt, the director of adolescent education at McCarton School in New York City. Most of this series focuses on how hard it is to deal with autism. In segment 4, a school principal says, “Autism can suck the fun out of life. Having a child with a disability can suck the fun out of life. And we work very hard here to put the fun back in.” In this simple statement, which is certainly well-meant, we see the disconnect that occurs between the people who are charged with educating and caring for autistic students. We see people who see autism from the outside, who ignore the autistic person’s perceptions and feelings. We see the emphasis on the parents and not on the person with the disability. Note that the principal says that “[h]aving a child with a disability sucks the fun out of life,” not having a disability sucks the fun out of life. The focus is on the wrong people, or at least not equally on the focused on the people living with the disability. And it’s insensitive, no matter if it’s well meaning or not.
No, it isn’t easy to parent children with autism and I’m not suggesting a joy of autism documentary that ignores the struggles for all involved. I suspect, however, that it isn’t easy to parent children period, and by putting the focus on how parents and sibling are affected by a child’s autism and ignoring how the person with autism is impacted, the end result here is a peculiar narcissism that denies the autistic individual his and her rightful place at the table as an active participant in the discussion of what it means to be autistic and what it means to live with autism.
While segment two was a more optimistic look at families impacted with autism in that the autistic children were not portrayed quite so negatively, that relative strength is lost in what has, by the fifth segment, become abundantly clear: MacNeil’s view of autism and autistic individuals is one that negates the quality and the value of the autistic person’s experience. Ironically, the routine stereotype of autistic individuals using people as objects is in obvious display, but it is the family members who are treating the autistic family members as objects: objects to be pitied, objects to be resented, objects to project all the family issues onto. If this is an unpleasant experience for me, the mother of three on the spectrum, to watch, then I can only imagine how offensive it is for autistic individuals to see.
I can guarantee this, my three children will see none of this series. At least not now. Perhaps someday, we will watch it as a lesson in negative stereotyping and an epic failure in empathy. It is not a series that I can recommend as being a good starter for people interested in what autism is and how it impacts the person who has been diagnosed with autism or their family members. If a primer in most of the controversies in the autism world is what one’s looking for, this is a good launching point, but not because it presents those controversies. It’s only good in that it creates the launching point for the discussion of what some of the most serious issues are in the autism community: how autistic individuals are portrayed, how they are treated, and how many people view autistic individuals’ roles as self-advocates: non-existent.
The series started with the sour note of a family convinced it was the vaccines, with the focus on the sacrifices that families make for autistic children (people shouldn’t be parents if they aren’t ready to put children first; parenting isn’t supposed to be a contest about who could be the biggest martyr). The focus is on Robert MacNeil’s daughter, son-in-law and grandson, who is on the spectrum. Alison MacNeil believes her son’s autism was caused by vaccines at 15 months (and is a commenter at Age of Autism); this first segment focuses on the family and how it is impacted by Nick’s autism. In the first segment, MacNeil interviewed his granddaughter about her brother, and he repeats this motif in the fifth segment, which focuses on a family whose son and brother is 21 and aging out of the educational system.
Whether these two sisters, at vastly different points in their lives, are led to discuss their fears and their frustrations or edited to suggest that their primary focus is on how their brothers’ disabilities will impact their own lives, it’s a bitter pill to swallow if you’re looking at it from the autistic person’s perspective.
Most of the segments of this series are very problematic, but other parts are overall, pretty decent. Segments 2 and 4 are the better segments, as more time is spent seeing children on the spectrum, although the narrative that MacNeil provides is about how hard it is to deal with autistic children and their needs. In the fourth segment is the brightest spot in the entire series:
“JESSE MOJICA: I am a very different person than I was before Adam was in my life. And when he was diagnosed with autism, it was a very difficult time. This is a moment where your life is changing dramatically, and you can either be broken by that, or it can take you in another direction. And where Adam took me was he made me into a better man. And he's really taught me that the true meaning of life is to love and to give of yourself and to be compassionate and to serve others. And I've met a lot of very impressive people in my life, but no one's taught me that more than my son, and I will be forever grateful to him.”
Part 4 closed on this note and it is the single best part of the entire series.
Part 5 of the PBS series on autism looks at adults with autism. Here was a prime opportunity to actually talk with autistic adults. So did they? No, not really. Not unless you consider three questions a talk. They interview the administrator for the school that Zach, an autistic adult, attends. Then MacNeil talks to the father, the mother, and the sister. What about Zach, the young man everyone is talking about? MacNeil briefly asks Zach if he likes the job he works, but that’s it. About ten seconds:
“ROBERT MACNEIL: Almost finished?
ZACH HAMRICK: Yes.
ROBERT MACNEIL: Do you like the job
?ZACH HAMRICK: Yes.
ROBERT MACNEIL: Do you find it easy, or is it hard?
ZACH HAMRICK: Yes.”
This segment comes to a fairly abrupt close with the peculiarly worded sentences:
“ROBERT MACNEIL: In the meantime, the family finds what comfort it can from the idiosyncrasies of Zach's mixed limitations and skills.And the uncanny relevance of these memorized words he is able to utter so clearly.
(SINGING)
ROBERT MACNEIL: We don't like what we don't understand. In fact, it scares us.”
In the first sentence of the closing paragraph, MacNeil reveals, in case it had somehow not been clear in the previous four segments, that this isn’t about autism and it isn’t about autistic individuals. It’s about how autistic individuals impact their families and their communities. Each segment contains extended interviews, so maybe one of those is the extended interview with Zach on how he feels about his autism, his difficulties, and his triumphs? Nope. Instead there are two extended interviews, one with the Zach’s school administrator and one with Peter Gerhardt, the director of adolescent education at McCarton School in New York City. Most of this series focuses on how hard it is to deal with autism. In segment 4, a school principal says, “Autism can suck the fun out of life. Having a child with a disability can suck the fun out of life. And we work very hard here to put the fun back in.” In this simple statement, which is certainly well-meant, we see the disconnect that occurs between the people who are charged with educating and caring for autistic students. We see people who see autism from the outside, who ignore the autistic person’s perceptions and feelings. We see the emphasis on the parents and not on the person with the disability. Note that the principal says that “[h]aving a child with a disability sucks the fun out of life,” not having a disability sucks the fun out of life. The focus is on the wrong people, or at least not equally on the focused on the people living with the disability. And it’s insensitive, no matter if it’s well meaning or not.
No, it isn’t easy to parent children with autism and I’m not suggesting a joy of autism documentary that ignores the struggles for all involved. I suspect, however, that it isn’t easy to parent children period, and by putting the focus on how parents and sibling are affected by a child’s autism and ignoring how the person with autism is impacted, the end result here is a peculiar narcissism that denies the autistic individual his and her rightful place at the table as an active participant in the discussion of what it means to be autistic and what it means to live with autism.
While segment two was a more optimistic look at families impacted with autism in that the autistic children were not portrayed quite so negatively, that relative strength is lost in what has, by the fifth segment, become abundantly clear: MacNeil’s view of autism and autistic individuals is one that negates the quality and the value of the autistic person’s experience. Ironically, the routine stereotype of autistic individuals using people as objects is in obvious display, but it is the family members who are treating the autistic family members as objects: objects to be pitied, objects to be resented, objects to project all the family issues onto. If this is an unpleasant experience for me, the mother of three on the spectrum, to watch, then I can only imagine how offensive it is for autistic individuals to see.
I can guarantee this, my three children will see none of this series. At least not now. Perhaps someday, we will watch it as a lesson in negative stereotyping and an epic failure in empathy. It is not a series that I can recommend as being a good starter for people interested in what autism is and how it impacts the person who has been diagnosed with autism or their family members. If a primer in most of the controversies in the autism world is what one’s looking for, this is a good launching point, but not because it presents those controversies. It’s only good in that it creates the launching point for the discussion of what some of the most serious issues are in the autism community: how autistic individuals are portrayed, how they are treated, and how many people view autistic individuals’ roles as self-advocates: non-existent.
This is a great article. I feel the same way. I haven't seen this series because we don't have television and I guess I should be glad I didn't.
Thank you for saying this. I have always felt the same way, children come how they come. I like to say my children face more challenges than other children. This is because I want the reminder that the focus is on their lives. They have to live with their challenges forever, as parents it is our job to help them best meet those challenges, not wallow in self-pity.