2012 was an eventful year at Thinking Person’s Guide to Autism: Our book drew much acclaim, three new editors joined our team, we featured more than 30 profiles of Autistic kids and adults for April’s Slice of Life series, we went to the International Meeting for Autism Research in Toronto, our Facebook community hit and surpassed 10,000 members while remaining a nexus for thoughtful autism news and conversation, and we were cited and our editors were interviewed frequently — especially whenever autism made headlines.
We also continued to publish thought-provoking and educational essays and interviews on this site, and all enjoyed and learned from the ensuing discussions. The 15 TPGA posts (with excerpts) below were 2012’s most popular — meaning hotly debated and/or praised — and give a sense of what we in the Thinking Person’s Guide to Autism community had on our minds these past twelve months.
Thank you for reading and being part of the TPGA community. We wish you well, and hope you get to define your own happiness in the new year.
1) Dangerous Interventions: MMS and Autism
Emily Willingham
“With the appearance of “chemical castration” or fatal chelation, one would
think that we’ve already hit the nadir of experimental “curatives” for autism,
but there’s yet another, lower point. Now we have a cadre of three people who
seem to have determined that autism is The Next Big Thing for their “curative”
of choice, a solution that is essentially industrial-strength
bleach. This year’s AutismOne conference featured a presenter who told the audience that she has directed parents to use bleach
in the bodies of autistic children.“Before you read on, I have to warn you that what I describe here is child
abuse and tantamount to torture of autistic children. It is harrowing and
horrifying.”
2) Why Autistic Students Need Autistic Role Models
Karla Fisher, Cynthia Arnold, Tasia
“The message I want to get out is that for students like Nick to succeed, they need
the following:
- To be matched with ASD role models or at least to be able to name
three of them (they must know that people can and do succeed even when
they are autistic).- Their programs should be evaluated by ASD adults.
“Karla and I [Cynthia Arnold] would like to get these types of programs rolling all over
the United States. We know so many adults who can just walk though
program buildings and tell you the simplest things that can be
unintentionally hurtful to students.”
3) Kate Winslet’s Autism Awareness Project: The Golden Hat
Carol Greenburg, Shannon Des Roches Rosa, and Jennifer Byde Myers
“‘…the Golden Hat Foundation doesn’t just raise awareness about autism,
but it’s proof
of what happens when determined moms band together to create change.’
[co-founder] Margret talked about the terrible feeling she used to have,
of not being able to help her own child; and how important it is for
people to understand that non-speaking Autistic people can be capable,
can contribute to society.”
4) Autistic Grief Is Not Like Neurotypical Grief
Karla Fisher
“Grieving and ASD Symptoms: The thing that probably helped me more than any other thing during my
struggles was the realization that what was happening to me was sensory
processing failure versus just going insane. Once I had this
information, it became reasonably easy to understand what to do and I
was able to focus on symptom management. You see, every brain only has
so much space in which to process information, and if a very large part
of that is consumed with emotions, it can easily result in failures of
other areas”
5) Touch: Autism and Special Needs on Fox TV
Interview with Joanne Lara
“Fox TV’s new Kiefer Sutherland series Touch
premieres in two days, on Wednesday January 25th. We’re intrigued, and
watchful. The series revolves around a non-verbal child, Jake, who
understands numerical patterns other people can’t perceive — and his
father Martin’s attempts to understand not only what Jake is trying to
communicate, but Jake himself.”
6) Scarred
Kate
“They say that what doesn’t kill you, makes you
stronger. If so, we are forged of steel and iron. We can deal with
whatever life throws at us, we are used to managing on our own, but
dammit, it is so hard sometimes. It is so hard trying and pretending
and figuring things out all the time. It takes years of effort to
understand, logically if not emotionally, that we are not stupid, we
are not invalid, we have just as much a right to be accepted and loved
as anyone else.”
7) A Culture of Abuse: Autism Care in France
David Heurtevent
“Autistics are subject to invasive care and conditions favoring sexual abuse. The best example of abuse in France is Le Packing,
a barbaric practice which consists of wrapping autistic children, naked
or stripped to their underwear, in cold wet sheets (at 50°F, 10°C),
like mummies. Some teams even put the sheets in the refrigerator before
using them. (Read a detailed description and critique of Le Packing at Support the Wall.) Today, in 2012, this technique is still used in 300 establishments in France. Le packing
has been used on children with autism for over thirty years despite
having never been subjected to any evaluation other than a few adult
case studies.”
8) Autism, empathy, and violence: One of these things doesn’t belong here
Emily Willingham
“Planned, social violence is not a feature of autism. Indeed, autistic people are far more likely to have violence done against them
than to do violence to others. No one knows as of this writing what
drove the Connecticut shooter to kill 20 children and 7 adults, point
blank, although obvious candidates are rage, hate, a huge grudge against
humanity, and some triggering event. But if he turns out to have been
someone on the spectrum, I’d like to remind everyone that autism is not
an explanatory factor in his actions. And that autistic people like my
son are fully, fully capable of empathizing with those who were the
target of them.”
9) The Dangers of Misrepresentation
Lydia Brown
“Of course Autistic people are capable of committing violent crime, but
it is in no way a reflection of their identity any more than when Jews,
Blacks, or Muslims commit violent crimes. The neurology of an accused
criminal defendant generally has little to do with the actual meat of
the accusation and everything to do with ableist attitudes and legal
defense strategies.”
10) DSM 5 Autism Criteria: Clarifying Impact, Taking Action
Interview with Dr. Gil Tippy
“It’s important to remember that these changes are not new news. They’ve
been in process for the past four years, and these guideline changes have been posted publicly for the past 18 months. What has happened is that Dr. Fred Volkmar, who used to be on the committee but left the working group, decided to do a
study to see how many kids diagnosed under the old criteria would meet
the criteria for the new Autism Spectrum Disorder diagnostic category.
His study concluded that some of the kids who previously were diagnosed
with PDD-NOS and Asperger Disorder would no longer meet the criteria
for Autism Spectrum Disorder. The working group that is developing the
new criteria felt that [Volkmar’s] study did not take into account that a
good diagnostician, a good Clinical Psychologist for instance, would
look carefully at the child in light of the new criteria, and then
diagnose appropriately.”
11) Understanding Autism Acceptance: A Parent’s Perspective
Shannon Des Roches Rosa
“The most important part of Autism Acceptance for me, however, is
understanding that Leo is not an empty shell, or a changeling. There is
not some alternate Leo trapped inside his body, waiting to escape. Leo
is here, right in front of me. Leo is Leo. He is the person he was born to be. He is his own awesome self.“I accept and adore Leo just as he is.”
12) My Autistic Son’s Joyful, Successful Disneyland Trip
Shannon Des Roches Rosa
“Leo’s visit was a huge success, and Disneyland turned out to his Land of
Yes. He got to do exactly what he wanted all day long, directing the
action according to his interests and impulses — an unprecedented
freedom for a boy with a heavily structured life. He was also never
bored, which can be an issue for people with communication challenges.
Because of a Guest Assistance Card the Mouse thoughtfully provides for
people whose wiring or needs makes it hard to wait in lines, Leo could
get right back on any ride he liked, as many times as he wanted. (That
pass also made him a hero in the eyes of his little sister Mali and
eight-year-old cousin Christie, who got to tag along on all those
instant-repeat rides.)”
13) Sensory Issues vs. Behaviors: On the Recent AAP Policy Statement
Brenda Rothman
“We know pediatricians are overwhelmed
by lack of information about autism and autism therapies. We
encourage the AAP to partner with adult autistics, parents, and autism
professionals, like occupational therapists, to consider the whole
child, not just individual therapies. The pain, emotions, parenting
issues, and risks of treating sensory as behavioral are too real. We
need more from our the AAP and our pediatricians. “
14) The Last Place to Take Your Autistic Children
Karla Fisher
“I have been taking vacation time to attend Autism related conferences in
an effort to expand my knowledge of the “autism profession.” This is a
world that is uncomfortable for me at best and downright hostile at
worst. Don’t get me wrong. I realize that these professionals are trying
to do well. I know they have good intentions. But just after my
promotion, I was literally brought to tears in one of the events. This
is amazing because I am so strong. I fear today for those who are not so
strong.”
15) “Don’t let your children grow up in a world where society devalues their lives.”
Lydia Brown
“The truth is that we, Autistic adults, youth, and children, need you. We
need you to support us. We need you to love us. We need you to listen
to us, and to believe that whatever we have to say, write, sign, draw,
or communicate in any other way is of vital importance whether or not
you agree with it.“Without your help and love, we might not make it in the world as adults.”