I love my boy so much. Why don't reporters write about that? Photo © Emily Willingham |
I have been sick for the past few days so it is not as sharp as I'd like it to be -- but the core is there -- using excerpts from the story, interspersed with my commentary. Please, reporters -- stop writing awful stories about autistic people and their families.
Mysteries of the Mind: Dealing with the different worlds of autism
Jeffrey is crying.
Why do stories about autistic people always start out on a negative and/or pity-evoking note?
Standing at the Pittsburgh Zoo and PPG Aquarium one day in May, the stocky, broad-faced 19-year-old is bawling like a toddler, which in some ways he still is.
No. He is a nineteen-year-old Autistic young man. Autism means some things are harder for him than for non-Autistic people. But he is not a toddler, not in any way. Describing him that way is both inaccurate and demeaning.
Jeffrey Maloney has severe autism. He does not speak, except for some short phrases. He is not toilet-trained. He cannot read or write. He suffers from seizures. And he is obsessed with certain objects and activities: animated Disney movies; GeoMagnets; and quarters, which he touches and stacks and lines up in precise, repetitive ways.
How about writing what he does rather than what he doesn't? The facts are the same in this rewritten paragraph -- except his personal hygiene should be his (and his family's) private business:
Rewrite:
Fair enough.
Two of the four Maloney children have autism. Jeffrey's older brother, Patrick, 20, has Down syndrome and a form of autism known as "pervasive developmental disorder not otherwise specified." Like Jeffrey, Patrick does not speak and is not toilet-trained.
How would you feel if you were 20 years old and a reporter told the world you weren't toilet trained? This is part of presuming competence -- behaving as though people with disabilities understand every word you're saying. Because in most cases, what proof do you have that they don't, really?
[The parents] also don't spend a lot of time worrying about that issue. "I can't say I ever thought, 'Oh no, we're not going to live the dream life we would've had,' " Don said. "I think I've always been of the opinion you play the hand you're dealt and you make the best of it."
Fair enough.
"Our life is severely impacted by autism," Lisa added. "Every part of our life -- mine, my husband's and our typical kids' -- is geared to run around what the boys need."
This is a matter of attitude, IMHO. I don't want to ding these folks too badly, because they seem to have a fairly matter-of-fact approach to parenting. I'd phrase this as "Autism is a big part of our life," but that's me. Also, every family has to make allowances for different kids' needs. That's just the way it is. Which is what I tell my girls when they complain about anything related to their brother's schedule: we all make accommodations for each other.
She said it was "a little nerve-wracking" to allow the Post-Gazette to follow her family, because "you don't know how it's going to come out in the story -- because I don't want people to think we're saying 'Woe is me,' because that's not it. You just go about your daily life and you trudge through."
Fair enough. Though I don't trudge, I alternate skipping and stomping.
Don said their decisions about having more children might have been different if Patrick and Jeffrey had been their first two. "If we had had two children with handicaps in a row, I think we would have asked, 'Should we do this again?' "
I've not seen anyone use the term "handicap" in a while -- most people with disabilities prefer the term 'disability.'
To spend time with the Maloneys is to realize that there are two different worlds in autism.
No. Autism is a spectrum. And Autistic people who can speak and write independently can be very outspoken about the pervasiveness of the disabilities they share with other Autistic people, whether those disabilities are obvious or not. They can be especially direct about the trauma of being expected to suppress Autistic behaviors.
Of course, many researchers in the field now say that the symptoms and abilities of autistic children vary so widely that we ought to be talking about several different "autisms."
Why do stories about autistic people always start out on a negative and/or pity-evoking note?
Standing at the Pittsburgh Zoo and PPG Aquarium one day in May, the stocky, broad-faced 19-year-old is bawling like a toddler, which in some ways he still is.
No. He is a nineteen-year-old Autistic young man. Autism means some things are harder for him than for non-Autistic people. But he is not a toddler, not in any way. Describing him that way is both inaccurate and demeaning.
Jeffrey Maloney has severe autism. He does not speak, except for some short phrases. He is not toilet-trained. He cannot read or write. He suffers from seizures. And he is obsessed with certain objects and activities: animated Disney movies; GeoMagnets; and quarters, which he touches and stacks and lines up in precise, repetitive ways.
How about writing what he does rather than what he doesn't? The facts are the same in this rewritten paragraph -- except his personal hygiene should be his (and his family's) private business:
Jeffrey Malone is Autistic and has a seizure disorder. When he speaks, it is in short phrases. He has a focused joy with certain objects and activities: animated Disney movies; GeoMagnets; and quarters, which he touches and stacks and lines up in precise, repetitive ways.His routines govern his life, and when they are disrupted -- or he thinks they have been -- he melts down, as he is doing on this warm spring day. For some reason, says his mom, Lisa, Jeffrey didn't think this was the right day for the family to be at the zoo, which is one of their regular outings, and so he was distraught.
Rewrite:
His routines are of utmost importance to him, and it is almost impossible for him to bear their disruption. When they are disrupted -- or he thinks they have been -- he melts down, as he is doing on this warm spring day...For people with autism, even those who can speak and score high on intelligence tests, changes in their environment can completely undo them. For Jeffrey, his mom says, it can be "as simple as someone taking his glasses off in a restaurant, because if you looked a certain way when he walked in and then you changed, he does not like people to change."
Fair enough.
Two of the four Maloney children have autism. Jeffrey's older brother, Patrick, 20, has Down syndrome and a form of autism known as "pervasive developmental disorder not otherwise specified." Like Jeffrey, Patrick does not speak and is not toilet-trained.
How would you feel if you were 20 years old and a reporter told the world you weren't toilet trained? This is part of presuming competence -- behaving as though people with disabilities understand every word you're saying. Because in most cases, what proof do you have that they don't, really?
[The parents] also don't spend a lot of time worrying about that issue. "I can't say I ever thought, 'Oh no, we're not going to live the dream life we would've had,' " Don said. "I think I've always been of the opinion you play the hand you're dealt and you make the best of it."
Fair enough.
"Our life is severely impacted by autism," Lisa added. "Every part of our life -- mine, my husband's and our typical kids' -- is geared to run around what the boys need."
This is a matter of attitude, IMHO. I don't want to ding these folks too badly, because they seem to have a fairly matter-of-fact approach to parenting. I'd phrase this as "Autism is a big part of our life," but that's me. Also, every family has to make allowances for different kids' needs. That's just the way it is. Which is what I tell my girls when they complain about anything related to their brother's schedule: we all make accommodations for each other.
She said it was "a little nerve-wracking" to allow the Post-Gazette to follow her family, because "you don't know how it's going to come out in the story -- because I don't want people to think we're saying 'Woe is me,' because that's not it. You just go about your daily life and you trudge through."
Fair enough. Though I don't trudge, I alternate skipping and stomping.
Don said their decisions about having more children might have been different if Patrick and Jeffrey had been their first two. "If we had had two children with handicaps in a row, I think we would have asked, 'Should we do this again?' "
I've not seen anyone use the term "handicap" in a while -- most people with disabilities prefer the term 'disability.'
To spend time with the Maloneys is to realize that there are two different worlds in autism.
No. Autism is a spectrum. And Autistic people who can speak and write independently can be very outspoken about the pervasiveness of the disabilities they share with other Autistic people, whether those disabilities are obvious or not. They can be especially direct about the trauma of being expected to suppress Autistic behaviors.
Of course, many researchers in the field now say that the symptoms and abilities of autistic children vary so widely that we ought to be talking about several different "autisms."
Yet Autistic adults of all abilities continue to emphasize Autistic commonalities.
On a practical level, though, the picture the Maloneys paint is much different than the image people get when they see highly talented autistic people like Temple Grandin or John Elder Robison.
Among many who occupy the higher-functioning realms of autism, including those with Asperger's syndrome, there is resentment toward any talk of "curing" autism. They want the condition to be recognized as a special set of differences and gifts.
OK, now I'm just irritated. John Elder Robison and Temple Grandin are both extremely talented, and should be recognized as such. But they are also very clear about how they compensate for their disabilities. And they both had childhood trauma because of their autism. They both work very hard to help the world better understand Autistic people's needs in general as legitimate, so today's Autistic kids & adults don't have such brutal, misunderstood experiences.
As a fundraiser for Autism Speaks, whose mission statement says it is "dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism," Lisa constantly hears from people who hate the term "cure."
I hate the term cure, because autism is not a disease. My son, who is a 1:1 support kid, was born autistic. That's the way his brain came. What he needs is acceptance and support and understanding.
"In families with autism whose kids do really well, they get almost angry at people who say we want a cure or want a change. I say to this one young man who always brings it up to me, 'Look: if my son could be you, that would be a cure.' "
No, that would be shape-shifting. We need to work harder to understand autistic people for who they are, and get them the support they need -- which would then benefit their families as well. Also, *cough*, eugenics.
"As a parent who has a child on the more severe end of the spectrum, I think that's a very different thing than someone with high-functioning Asperger's.
Yes, because they are different people with different abilities. But since Autistic people tend to be more similar than dissimilar, fighting for Autistic accommodations and support in general can benefit both types. Also, I dislike the term "severe" as it's not useful and automatically prejudices people against my son. When I'm feeling cheeky, I say Leo has "high octane" autism. When I'm feeling practical, I say he's a 1:1 support kid.
"I want that for my own child, to tell you the truth. I would think I had gone to heaven if my child could be an Asperger's child. But even for the Asperger's children, it's not normal. You can ask everyone to accept you for who you are, but you are not in that straight and normal part of the world."
Really? My observation has been that the Asperger's-type kids are the ones who get broken more easily by social and behavioral and sensory expectations -- because they can be included more easily, and they can "pass," and their inevitable resulting meltdowns are more likely to be misinterpreted as tantrums. This makes them also more likely to experience social trauma in middle and high school. They are also less likely to get an official diagnosis, but even when they do they are less likely to get the accommodations they need when resources are tight because the kids whose needs are more obvious tend to get prioritized.So they fall through the cracks, and they suffer. As do their parents. But now I'm falling into the trap of making comparisons, when what we need -- yet again -- is for all Autistics to get fair and sufficient accommodations.
Still, where people with Asperger's are apt to be viewed as awkward or geeky, autistic children like Jeffrey and Patrick are the object of often pitying stares.
So what? Fuck 'em, those starers. We take Leo out to every single place we think he will enjoy and can tolerate -- and we work on teaching him to tolerate other places as well. If he is no longer tolerating them, we leave. Please know that Jeffrey and Patrick and Leo have the same right to be men-about-town as anyone -- the real problem here is that too many parents have been socially conditioned to keep their high support Autistic kids home.
Jeffrey "will hit his head with his hands, or bang his head against the wall or table, or pinch himself," Lisa said. "And people will stare, and they should stare, because he's a big kid. That I can be OK with. But it's the people who stand there a long time staring that get to me."
Again, fuck 'em. I return those stares, lock-eyed and without expression. I've never had a person not drop their eyes in shame after a second or two. But my priority will always be Leo, and getting him out of a situation that is distressing for him.
One time on a shopping trip, Jeffrey lay down in the middle of a mall, "and there was a woman who just stood there and stared at us like we were the circus. Yes, look; yes, be sympathetic; but then, move on, or offer to help."
This is hard, and I get it. But the return stare does work, and it lets people know you are on your kid's side. Ignoring the starers also works. As does asking for help, surprisingly -- often people want to help but don't know what to do and don't want to intrude.
While the negative encounters stand out, the Maloneys also appreciate the people who have been extraordinarily kind and patient with their sons, whether it is the Giant Eagle employees who allow Patrick to order food from pictographs on his computer tablet, or the women who cut the boys' hair at a Great Clips near their home.
Our experience has been that most people in retail are awesome and thoughtful. We also tend to go to places where people know Leo, and have his back.
When a family has a child with special needs, let alone two, it can radically change the landscape for the remaining siblings.
Yes, Iz's soccer schedule dominates our entire family calendar. I kid, but only slightly. Again with the "we all accommodate each other." And also the "no guarantees in parenting."
For Adam Maloney, it made him grow up faster and quickly take on the role of helper to his older brothers.
This is not the case with Mali, Leo's younger sister. She is very very very awesome, but also her own person leading her own life -- and she helps the family in other ways. Iz is much more thoughtful with her brother and always has been.
"He's a remarkable child," his mother said. "Very level-headed, very responsible. Sometimes I would try to tell him, you know, things won't fall apart if you just be a young child sometime. Three or four times teachers in elementary school called me in to say, 'He's too serious,' but I would say, 'Well, he has a very serious life.' "
I really think Adam is demonstrating an interplay of personality and circumstances, and this seriousness cannot be generalized to all autism siblings as stated directly above.
His father said Adam "realized from a young age that he's got to sacrifice, and pitch in a little more, but in the long run, it's going to be beneficial because he knows it's hard for any family to function well, and he's got a basis of knowing what it takes to keep a family going."
We've worked very hard to ensure that our three of our kids get to be the kind of kids they were born to be. And all families sacrifice and accommodate, but we do not expect excessive sacrifice for Leo's sake -- because I don't think he would want that, and I don't want his sisters to resent him.
Adam helped with Jeffrey's intensive therapy when Jeffrey was young, and now, he will even do his homework in the bathroom so he can watch while Jeffrey takes a bath to make sure he doesn't have any seizures.
That is thoughtful, the homework during baths. But I hope Adam helped with the therapy willingly and was not pressured into it.
How does he feel about all this? "The No. 1 lesson I've learned is: Always be on your toes. That's pretty much the basis of everything. Everything revolves around Jeffrey, and paying attention to him at all times."
My No. 1 question is: doesn't this family have respite, and if not, why not?
And while that may seem to ask for a lot of self-sacrifice, Adam said that as a result, "I think I'm a lot nicer to people and I'm more understanding. I'm also a lot more aware of other people than some are. Even with my sister, she won't have to say anything and I'll understand how she is feeling based on her body language."
My kids, by contrast, have learned not to underestimate or avoid or be prejudiced against people who are different than them. That's why they're nicer. (Well, the girls are nicer sometimes. And Leo's just a nice kid in general.)
He also has created his own space by joining track and soccer teams in school, which allows him to decompress from pressures at home.
All kids deserve their own space. I'm glad he's found his.
"My friends will say they've had a really bad day, and I'll ask why, and they will say something like, 'Oh, my TV was broken and I couldn't watch my TV shows' and in the back of my mind I'm thinking, 'Well my brother screamed for eight hours today and I was trying to sit in my room and have peace and quiet and I couldn't do it.' Other people's problems aren't really problems in my world anymore."
Hmm. I get this, the comparison game -- I am human after all -- though we tend to try to practice gratitude for what we do have and not dwell on what we don't. But my heart also goes out to the screaming brother, who was obviously in distress. I'd want to know why he was screaming and would be wondering -- again -- whether or not he's getting the right supports, and enough of them.
Lisa Maloney said her family life has changed how she views other problems, too."I don't feel like I get as crazy angry with people, because you don't know what they're going through. If someone cuts me off in traffic, that's OK, because maybe that person has to get home because their son is having a seizure -- you don't know."
Ha. Me too.
Yes, I get this. [updated to include the following two sentences, my oversight] But there is no "first big wave" of Autistics entering adulthood. Autistic people have always been here.
As they try to see the way into their future, the Maloneys also try not to burden others with their present. "People in my family comment all the time, 'Oh, you just handle it all so well,' " Lisa said, "and we do trudge through it, but I don't go into my office and say I've been scrubbing poop for four hours, or if I get into my office and my boss says I thought you were going to be here at 8:30 and it's 10 to 9 and we have to go to a meeting, I don't say 'Well, I had to get the last load of laundry in or we wouldn't have had clean sheets tonight.' "
I don't appreciate being lauded for being Leo's parent either, nor does my husband (we have two other kids, after all). What child doesn't deserve their parent's very best? (And to trust them not to talk about their bathroom habits...)
"No one would ever say to me, 'I wish I could wake up in your life,' " Lisa said. "But I think a lot of people would like the relationships we have in our family unit -- and it is because of the boys."
This is a better note to end on than most autism articles, though the compliment to their boys is rather backhanded. And I don't want other peoples' lives either -- too much newness to muddle through. In our house, anything different is bad. But we're still a mindfully happy house, and I do wish reporters would write more about families like ours, and not project pity-based media stereotypes on us.
On a practical level, though, the picture the Maloneys paint is much different than the image people get when they see highly talented autistic people like Temple Grandin or John Elder Robison.
Among many who occupy the higher-functioning realms of autism, including those with Asperger's syndrome, there is resentment toward any talk of "curing" autism. They want the condition to be recognized as a special set of differences and gifts.
OK, now I'm just irritated. John Elder Robison and Temple Grandin are both extremely talented, and should be recognized as such. But they are also very clear about how they compensate for their disabilities. And they both had childhood trauma because of their autism. They both work very hard to help the world better understand Autistic people's needs in general as legitimate, so today's Autistic kids & adults don't have such brutal, misunderstood experiences.
As a fundraiser for Autism Speaks, whose mission statement says it is "dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism," Lisa constantly hears from people who hate the term "cure."
I hate the term cure, because autism is not a disease. My son, who is a 1:1 support kid, was born autistic. That's the way his brain came. What he needs is acceptance and support and understanding.
"In families with autism whose kids do really well, they get almost angry at people who say we want a cure or want a change. I say to this one young man who always brings it up to me, 'Look: if my son could be you, that would be a cure.' "
No, that would be shape-shifting. We need to work harder to understand autistic people for who they are, and get them the support they need -- which would then benefit their families as well. Also, *cough*, eugenics.
"As a parent who has a child on the more severe end of the spectrum, I think that's a very different thing than someone with high-functioning Asperger's.
Yes, because they are different people with different abilities. But since Autistic people tend to be more similar than dissimilar, fighting for Autistic accommodations and support in general can benefit both types. Also, I dislike the term "severe" as it's not useful and automatically prejudices people against my son. When I'm feeling cheeky, I say Leo has "high octane" autism. When I'm feeling practical, I say he's a 1:1 support kid.
"I want that for my own child, to tell you the truth. I would think I had gone to heaven if my child could be an Asperger's child. But even for the Asperger's children, it's not normal. You can ask everyone to accept you for who you are, but you are not in that straight and normal part of the world."
Really? My observation has been that the Asperger's-type kids are the ones who get broken more easily by social and behavioral and sensory expectations -- because they can be included more easily, and they can "pass," and their inevitable resulting meltdowns are more likely to be misinterpreted as tantrums. This makes them also more likely to experience social trauma in middle and high school. They are also less likely to get an official diagnosis, but even when they do they are less likely to get the accommodations they need when resources are tight because the kids whose needs are more obvious tend to get prioritized.So they fall through the cracks, and they suffer. As do their parents. But now I'm falling into the trap of making comparisons, when what we need -- yet again -- is for all Autistics to get fair and sufficient accommodations.
Still, where people with Asperger's are apt to be viewed as awkward or geeky, autistic children like Jeffrey and Patrick are the object of often pitying stares.
So what? Fuck 'em, those starers. We take Leo out to every single place we think he will enjoy and can tolerate -- and we work on teaching him to tolerate other places as well. If he is no longer tolerating them, we leave. Please know that Jeffrey and Patrick and Leo have the same right to be men-about-town as anyone -- the real problem here is that too many parents have been socially conditioned to keep their high support Autistic kids home.
Jeffrey "will hit his head with his hands, or bang his head against the wall or table, or pinch himself," Lisa said. "And people will stare, and they should stare, because he's a big kid. That I can be OK with. But it's the people who stand there a long time staring that get to me."
Again, fuck 'em. I return those stares, lock-eyed and without expression. I've never had a person not drop their eyes in shame after a second or two. But my priority will always be Leo, and getting him out of a situation that is distressing for him.
One time on a shopping trip, Jeffrey lay down in the middle of a mall, "and there was a woman who just stood there and stared at us like we were the circus. Yes, look; yes, be sympathetic; but then, move on, or offer to help."
This is hard, and I get it. But the return stare does work, and it lets people know you are on your kid's side. Ignoring the starers also works. As does asking for help, surprisingly -- often people want to help but don't know what to do and don't want to intrude.
While the negative encounters stand out, the Maloneys also appreciate the people who have been extraordinarily kind and patient with their sons, whether it is the Giant Eagle employees who allow Patrick to order food from pictographs on his computer tablet, or the women who cut the boys' hair at a Great Clips near their home.
Our experience has been that most people in retail are awesome and thoughtful. We also tend to go to places where people know Leo, and have his back.
When a family has a child with special needs, let alone two, it can radically change the landscape for the remaining siblings.
Yes, Iz's soccer schedule dominates our entire family calendar. I kid, but only slightly. Again with the "we all accommodate each other." And also the "no guarantees in parenting."
For Adam Maloney, it made him grow up faster and quickly take on the role of helper to his older brothers.
This is not the case with Mali, Leo's younger sister. She is very very very awesome, but also her own person leading her own life -- and she helps the family in other ways. Iz is much more thoughtful with her brother and always has been.
"He's a remarkable child," his mother said. "Very level-headed, very responsible. Sometimes I would try to tell him, you know, things won't fall apart if you just be a young child sometime. Three or four times teachers in elementary school called me in to say, 'He's too serious,' but I would say, 'Well, he has a very serious life.' "
I really think Adam is demonstrating an interplay of personality and circumstances, and this seriousness cannot be generalized to all autism siblings as stated directly above.
His father said Adam "realized from a young age that he's got to sacrifice, and pitch in a little more, but in the long run, it's going to be beneficial because he knows it's hard for any family to function well, and he's got a basis of knowing what it takes to keep a family going."
We've worked very hard to ensure that our three of our kids get to be the kind of kids they were born to be. And all families sacrifice and accommodate, but we do not expect excessive sacrifice for Leo's sake -- because I don't think he would want that, and I don't want his sisters to resent him.
Adam helped with Jeffrey's intensive therapy when Jeffrey was young, and now, he will even do his homework in the bathroom so he can watch while Jeffrey takes a bath to make sure he doesn't have any seizures.
That is thoughtful, the homework during baths. But I hope Adam helped with the therapy willingly and was not pressured into it.
How does he feel about all this? "The No. 1 lesson I've learned is: Always be on your toes. That's pretty much the basis of everything. Everything revolves around Jeffrey, and paying attention to him at all times."
My No. 1 question is: doesn't this family have respite, and if not, why not?
And while that may seem to ask for a lot of self-sacrifice, Adam said that as a result, "I think I'm a lot nicer to people and I'm more understanding. I'm also a lot more aware of other people than some are. Even with my sister, she won't have to say anything and I'll understand how she is feeling based on her body language."
My kids, by contrast, have learned not to underestimate or avoid or be prejudiced against people who are different than them. That's why they're nicer. (Well, the girls are nicer sometimes. And Leo's just a nice kid in general.)
He also has created his own space by joining track and soccer teams in school, which allows him to decompress from pressures at home.
All kids deserve their own space. I'm glad he's found his.
"My friends will say they've had a really bad day, and I'll ask why, and they will say something like, 'Oh, my TV was broken and I couldn't watch my TV shows' and in the back of my mind I'm thinking, 'Well my brother screamed for eight hours today and I was trying to sit in my room and have peace and quiet and I couldn't do it.' Other people's problems aren't really problems in my world anymore."
Hmm. I get this, the comparison game -- I am human after all -- though we tend to try to practice gratitude for what we do have and not dwell on what we don't. But my heart also goes out to the screaming brother, who was obviously in distress. I'd want to know why he was screaming and would be wondering -- again -- whether or not he's getting the right supports, and enough of them.
Lisa Maloney said her family life has changed how she views other problems, too."I don't feel like I get as crazy angry with people, because you don't know what they're going through. If someone cuts me off in traffic, that's OK, because maybe that person has to get home because their son is having a seizure -- you don't know."
Ha. Me too.
Facing the future. One
reason the Maloneys agreed to talk about their lives is that they
realize they are in the first big wave of parents whose autistic
children are entering an uncertain adulthood.
[...] She is ambivalent about group
living, not only because of concerns about the quality of programs that
are available, but also because of her desire to keep Jeffrey and
Patrick safe and happy. "One day I'm thinking I'll never put them
anywhere, they're going to be with me until the day I die, and then
another day, I'll think 'Oh, this is not fair to them or me or anyone,
and we're going to start making a plan about where to put them.'"Yes, I get this. [updated to include the following two sentences, my oversight] But there is no "first big wave" of Autistics entering adulthood. Autistic people have always been here.
As they try to see the way into their future, the Maloneys also try not to burden others with their present. "People in my family comment all the time, 'Oh, you just handle it all so well,' " Lisa said, "and we do trudge through it, but I don't go into my office and say I've been scrubbing poop for four hours, or if I get into my office and my boss says I thought you were going to be here at 8:30 and it's 10 to 9 and we have to go to a meeting, I don't say 'Well, I had to get the last load of laundry in or we wouldn't have had clean sheets tonight.' "
I don't appreciate being lauded for being Leo's parent either, nor does my husband (we have two other kids, after all). What child doesn't deserve their parent's very best? (And to trust them not to talk about their bathroom habits...)
"No one would ever say to me, 'I wish I could wake up in your life,' " Lisa said. "But I think a lot of people would like the relationships we have in our family unit -- and it is because of the boys."
This is a better note to end on than most autism articles, though the compliment to their boys is rather backhanded. And I don't want other peoples' lives either -- too much newness to muddle through. In our house, anything different is bad. But we're still a mindfully happy house, and I do wish reporters would write more about families like ours, and not project pity-based media stereotypes on us.
I'm also pretty uncomfortable with the repeated references to these two young men as "boys" and "children" - something that is shockingly common in reporting about autistic and/or developmentally disabled adults.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteFrom the Post-Gazette portion:
ReplyDelete"Facing the future. One reason the Maloneys agreed to talk about their lives is that they realize they are in the first big wave of parents whose autistic children are entering an uncertain adulthood."
As an autistic woman with five decades now under my belt, I resent comments like the one I just quoted. NO, you are not the "first big wave of parents whose autistic children are entering an uncertain adulthood." You are merely the first big wave of parents who have had the luxury of knowing that your kids are autistic and worthwhile, and not 'crazy,' and your kids are the first big wave of kids to have the luxury of the hope that comes along with that.
It was not so for my parents or me.
D'oh. Thanks for catching that. I agree that Autistics have always been here as per the following link and will update the post immediately. http://blogs.discovermagazine.com/crux/2012/07/11/is-autism-an-epidemic-or-are-we-just-noticing-more-people-who-have-it/#.UlLPQZm9LCQ
DeleteI cannot update the post from my phone, not even in Chrome. Argh. Will update when I get home tonight. Apologies.
DeleteWow, I had to stop reading halfway through.
ReplyDeleteNothing bugs me quite like the "If my child were you," or "If my child had your abilities, I'd consider them cured," line.
No, if your child were me, your child would have *my* set of emotional/sensory/language usage/motor planning/self-injury issues instead of theirs. And trust me, I'm not cured.
The interaction of complex genetics and life history isn't just interchangeable between people like that. This IS basically saying that they'd rather have some other kid instead of their own. Also, for your kid to have my abilities, they'd have to have my history, too, and I don't think you want that as much as you think you do.
I have refrained from stepping into this discussion, but I have to respond to the last comment. There are an awful lot of people here who are simultaneously upset at my article for not understanding the uniqueness of their situations, but who also want to presume they know what is going on inside the heads of the Maloney family. First, as a fundraiser for Autism Speaks, I know that Lisa is familiar with all different types of autism families. And second, it is valid for her to have the perspective that with her sons, who can't even tell her what they are feeling or thinking most of the time, she would be thrilled to have them be at a place on the spectrum where they could. To presume that she is saying that she doesn't want the kids she has -- that is simply wrong, and cruel.
ReplyDeleteShe may be familiar with various "types" of autism families...what is a "type" of autism family, anyway?...please don't conflate types of autism *families* with differences in expression of *autistic people*...and yet she seems unfamiliar with the reality that people who appear "high-functioning" can still have epic communication issues alongside other challenges which tend to be minimized and disregarded by those around us if we have speech abilities.
DeleteI couldn't growing up, and can't, most of the time still, effectively communicate to people close to me what I'm feeling or thinking. So...she still wouldn't get that.
If people don't want to be understood to be saying that they'd wish for a different kid, they shouldn't say things like that they'd consider themselves in heaven to have an Asperger's or HFA kid, or "if my kid were you, I'd consider them cured." Because all that is, is wishing for their kid to have *somebody else's individual profile* of strengths, abilities, challenges, and disabilities...not simply to be absent their own difficulties. Because we aren't cured--we're just different in needs and expression, and for her to deny and minimize THAT is cruel as well.
Mark Roth, I am disappointed to see a reporter sink into defensive rather than listening mode. And I am doubly disappointed to see you reinforcing these harmful stereotypes about autism dichotomies and functions. The root of my critique is that all Autistic people need better support, and it hurts them *all* when you make functioning into a contest. It hurts Jeffrey and Patrick and my son and JER and Temple Grandin and the Autistic people commenting on this thread.
Delete"First, as a fundraiser for Autism Speaks,"
DeleteMy brain stopped because I'm suddenly reminded of the ASAN flyer: http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf
Mr. Roth:
ReplyDeleteYou wrote, "[It] is valid for her [Lisa] to have the perspective that with her sons, who can't even tell her what they are feeling or thinking most of the time, she would be thrilled to have them be at a place on the spectrum where they could."
Just exactly where "on the spectrum" is that place?
You are presuming to know.
And you are presuming to know because you erroneously equate the ability to speak with *effective communication*, such as being able to "tell...what they are feeling or thinking most of the time..."
NO. The two things are not synonymous.
The inability to *effectively* communicate "what they are feeling or thinking most of the time" is a core deficit of autism, with all of us, always and forever.
The bane of my existence has been the label of "high functioning" because people like you continue to believe that the moniker is synonymous with "core deficits have magically dissolved."
You couldn't be more wrong, or cruel.
^ This.
DeleteI left some of the below at FB TPGA, and I'm leaving it here, too:
ReplyDeleteThe point is that the article degrades the young man's humanity, describing intimate details about his personal hygiene, characterizing him as a toddler when he's a 19-year-old man, delineating how much of a burden he is on his family throughout, and not once giving any perspective to the autistic man the article was about. Another problem with the article is how it seeks to separate autistic people based on a neurotypical's assessment of function instead of the commonalities that autistic people share that, if understood and heard, would lead to more acceptance. For example, autistic adults are available and ready and willing to help nonautistics understand and interpret what other autistic people are feeling and thinking--but because of the emphasis on stratification, they get dismissed as "not really autistic" or "not like my son" for the very reason that they're able to help in this way. We read constantly about the parent perspective, the burden of autism. That angle is almost as old as I am. What would be fresh and refreshing and investigative and honest is to take the time to dig into the autistic perspective, for once.
And I have a question: If I were, as a journalist, to write an article about an elderly person with dementia, how appropriate would it be for me to provide intimate details about that person's toileting habits or to describe that person as a toddler or to focus only on what a burden that human being is to everyone? It would be incredibly inappropriate, in my opinion. Yet it's repeatedly viewed as just fine to do that with autistic people.
Excellent, Emily. Thank you...
ReplyDeleteThank you, Emily.
Delete" If I were, as a journalist, to write an article about an elderly person with dementia, how appropriate would it be for me to provide intimate details about that person's toileting habits or to describe that person as a toddler "
ReplyDeletePeople do that all the time: "http://therumpus.net/2012/06/my-mother-my-daughter/"
(for example)
you can argue that this too is wrong (or that it is OK because the adult in question is now dead). But it is pretty common for people to use the analogy of childhood to describe individuals with whom they have a 1:1 caregiving relationship. I think one of the reasons people do that is infancy & toddlerhood is the only 1:1 caregiving most people are familiar with.
Although I am open to all the arguments about why the language is wrong (neither 55 year old women nor 19 year old -- yes -- I still refer to 19 yo as boys), the language is not unique to autism.
I didn't say it was unique to autism, so you're arguing the wrong point here. The infantalization of autistic people (and by extension, anyone who is not, in fact, an infant) is inappropriate and wrong. I asked if it was OK, particularly as someone writing what is supposed to be a journalistic piece--not a personal narrative--about something they themselves are not (autistic, elderly) to infantilize the person they're writing about in this way. The answer is, no. It is not OK. In the case of autistic people and the case with which I'm most familiar, it does immense harm as the starting point for presuming incompetence.
DeleteIf you didn't mean to suggest that the language was unique to Autism, then why did you ask a question where the premise was that Autism is treated differently to other comparable situations?
DeleteRegarding the piece itself, I do not think 'intimate details' were shared, the article simply said the sons were 'not toilet-trained'. That sounds like a description of fact to me. It is pertinent because the article is about the families life, and the difficulties they face, and that is a part of it.
What, pray tell, would you consider more intimate that letting the world know your child still needs assistance with toileting? There are other ways to phrase this, such as "needs assistance with aspects of personal care" that do not unnecessarily get into specifics, do not immediately evoke pity and judgment.
DeleteI've certainly read more descriptive examples of toileting in online news sites, and what does personal care mean? Help trimming nose hairs? Pity and judgement are the readers choice to draw, whereas what was written was fact.
DeleteI have a question for you. With the little information available how do you know the sons were not asked if it was OK by them to print that and other information? Seems you have judged the situation for yourself and not "presumed competence". Which is kind of ironic.
Just because online news sites regularly feature degrading stories about people with disabilities doesn't make it right -- that is actually one of the things we're asking reporters to stop doing.
DeleteI doubt even this reporter would ask for permission from the young men to report intimate and embarrassing details, then allow their parents to speak for them on every other matter. So even if permission were given, there is still a horrendous lack of presumed competence on the reporter's behalf in the article as a whole.
well dissected post and very interesting comments...
ReplyDeleteincluding the journalist who is obviously somewhat butt-hurt that his 'inside' piece is provoking more criticism than praise here, from others who know the 'insides' of autism better than him. Shame, as the media that is read by the broad public should listen and learn from ALL parents of autistic kids and Autistic adults as well, instead of reproducing all these very similar stories that indeed represent well the spirit of those assimilating with Autism Speak. An attitude and understanding of autism that MANY "autism families" of "all types" are rejecting fiercely, because the focus of the organisation, and in consequence of the families associating with it, is set so strongly on future cures, research of causes and making autism 'disappear' instead of promoting and improving life with autism, here and now. Only a tiny fragment of the result of those "fundraisers" is actually invested in pragmatic and concrete help for families and autistic individuals. So how does this help this exhausted mother at all? Yes, it's not 'all roses' when you are parent of one or more children with autism, and the support systems even in the wealthier countries are still not adequate and need improvement. But rather than this sad story of parents 'bearing their cross' with only one positive mention of family unity (good!) and a worrying description of the siblings respite-lacking life, I would like the media mirror the real movement of acceptance and neurodiversity that has definitively reached the parents. Parents that do now LISTEN to Autistics who speak to them (or write) because even if they are "not like my child" they can give them valuable insights into their child's mind, that lead to real understanding and real breakthroughs in communication barriers.
These parents and their kids, the Autistics with a voice (sometimes found after a childhood of of non-verbal, 'low-functioning' behaviours) are all over the internet but so rarely the subject of news snippets or reportages on autism.
I understand this is a series, we'll hope it will improve. Otherwise, what the broad public takes away from it is about as much as they will from a report on the children's cancer ward, it's just an individual pity story with zero educational effect - plus the completely unnecessary mention of lack of toilet training..(wtf)
The repetitive use of the word "trudge" by the mother is particularly saddening, and I can only hope that "8hours screaming" is an exaggeration... ?
Thanks for voicing what most of us parents with children on the spectrum are thinking!!! ~CatB
ReplyDelete@whininginmysleep.com
Inclusion would solve some of these problems http://www.examiner.com/article/inclusion-for-for-autism-starts-to-make-sense
ReplyDeleteI disagree with your take on the discussion of his toileting needs. I don't like how they phrased it (as if him needing diapers was one of the things that made him a toddler in an adult's body), but I've heard many adults who need diapers say that they don't want needing diapers to be a taboo topic. They want to reduce the stigma around it, and acknowledge that adults need diapers too. Avoiding the topic does not lessen the stigma.
ReplyDeleteIt's fine for people to disclose about their own needs, and I agree that such matters should not be taboo. But It's a privacy violation to disclose such intimate matters about another person (and that includes one's own children, adult or not) in public.
ReplyDeleteMy mother says that Autism is not the end of the world, it's just a different one. I have high functioning autism thanks to the help my family and my therapists and TSSes gave me!
ReplyDelete