I am tired of most media autism stories -- the negativity, the pity, the false spectrum dichotomies, the harmful and outdated "cure" angles,
. So when Emily W. brought today's
to my attention, I had to break down exactly why stories like this are so upsetting.
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.
.
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:
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.
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.
