Please Excuse the Interruption
A few weeks ago, a bloke by the name of Rohan (don’t you just love that name?) emailed me to tell me that he liked Rethinking Autism’s message. I love getting emails like this, they balance out the ones from the people that really hate my message. Rohan is a music therapist and part of a band called Rudely Interrupted. I was intrigued when I discovered that 5 of the 6 band members have a disability. I was mesmerized when I heard them.
I’ll be honest, I was skeptical—not because the band members have different disabilities ranging from deafness to autism—because I don’t like new music. Seriously, I don’t think I’ve liked a new band since about 1995. Rudely Interrupted changed all that. “Close My Eyes” was the first track I played. I immediately smiled. The chaser was “If You Wannit”. Still smiling.
Don’t take my word for it, Time Out Sydney had this to say:
“...their music is some of the most energetic and genuine to emerge from the Australian rock ‘n’ roll underground in recent times. Their songs lift the band above the realm of novelty and give them a cultural cache in the image-obsessed world of indie rock.”
According to their website, they are
headed to New Zealand in March. If
a trip is out of the question, then consider buying their new album, Tragedy of the Commons, on iTunes. Take a tour of their site--get to know these guys and their music.
It's Here: "Thinking Person's Guide to Autism" Book
I read an article by an old friend this weekend that made me sad. She, like me, is the parent of an autistic child. Unfortunately, her experience has been the complete opposite of mine. There is no doubt in my mind that she loves her boy and wants the best for him, but it is coming from a very dark place. She kept using words like “poisoned” and “sick” when describing her perfectly beautiful son. Maybe, just maybe if she had the Thinking Person's Guide to Autism's book back then instead of the anti-vaxer handbooks that get so much attention, she (and her son) might be in a better place. Enough depressing stuff—onwards.
Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg have compiled a thought-provoking and essential collection of essays in their blog-turned-book, the Thinking Person’s Guide to Autism (TPGA).
Parents of newly diagnosed children need to come to their own conclusions about how they are going to raise their child. Unfortunately, there are too many books out there that give parents unrealistic expectations or scare them into trying potentially dangerous therapies. TPGA cuts through all the pseudoscience and misinformation and provides thoughtful, informative and relevant words to anyone looking to learn more about autism. Instead of chapters named “Detox, Chelation, and Trying Everything Under the Sun to Cure Your Kid” TPGA offers “Feeding Issues and Picky Eaters”, “Identifying and Avoiding Autism Cults”, and “Coming to Terms”.
There is an entire section devoted to essays from autistic adults. Yes folks, it’s true. Your little babies grow up to be adults and have a voice of their own. I highly suggest concentrating on this section that includes a wonderful piece written by Corina Lynn Becker: “What I Want People to Know.”
TPGA is the most comprehensive collection of essays that offers a realistic view of the autism landscape. As a parent, educator, caregiver, advocate or friend, you owe it to yourself to get informed. Don’t just take my word for it, see what the professionals are saying about Thinking Person’s Guide to Autism and pick up a copy while you’re at it.
Obama Administration Makes Controversial Appointment
By Dana Commandatore
Excuse me Mr. President, but did you know your recent appointee to the President’s Committee for People with Intellectual Disabilities, Peter Bell of Autism Speaks, has a long history of supporting pseudo-science that can harm children? It’s true, Autism Speaks’ EVP of Programs and Services supports the widely debunked and incredibly harmful theory that vaccines cause autism.
Many people don’t know that one of the most important people in the Autism Speaks camp is an anti-vaxer. It would be an embarrassment to Autism Speaks if they had to admit that they still hold onto a bogus theory that could potentially kill children. Thank goodness Left Brain/Right Brain’s Kevin Leitch is paying attention.
There is more. In January of 2009, Autism Speaks withdrew its support of the Inter-Agency Autism Coordinating Committee’s (IACC) Strategic Plan for Autism Research when IACC made a decision not to include research objectives connecting vaccines to autism. As a result, Alison Singer, a high-ranking official from Autism Speaks resigned. In an interview with NEWSWEEK, Singer stated:
At some point, you have to say, "This question has been asked and answered and it's time to move on." We need to be able to say, "Yes, we are now satisfied that the earth is round."
Maybe it is wrong to assume that Bell--being the high-level autism advocate that he is--actually is a tinfoil-hat-wearing fool. Perhaps his views have changed since Wakefield has been discredited. Therefore I’d like to ask him a simple question:
Mr. Bell, do you still believe that vaccines cause autism?
While we are waiting for an answer, I’d like to discuss the other problem I have with Peter Bell and Autism Speaks. In their mission statement, Autism Speaks says they are “dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism". Bell’s goal is to eliminate autism therefore I do not feel he would be concerned with improving the quality of life of people with intellectual disabilities. He would rather see the disability prevented, treated, “cured”.
Why not eliminate autism and other intellectual disabilities, right? I mean all you hear from parents is how devastating and horrible it is to raise an autistic child. Wrong. There is an entire community of autistic adults, therapists, parents and educators that would rather we focus on their quality of life instead of figuring out a way to prevent them from being born. As a society, our goal should not be to destroy what we don’t understand—especially when it is a human life.
As you can see, there is much more
work we need to do to change the conversation. Please reconsider Mr. President, it's not too late to do the right thing.
How to Ignore the Media and Learn to Love Autism: A Parent's Guide to Acceptance
By Dana Commandatore
Why Combating Autism is Wrong
On behalf of the Autistic Self Advocacy Network, I am writing to urge opposition to S. 1094, the Combating Autism Re-Authorization Act of 2011. Although we strongly support funding for research and services to enhance the lives of individuals on the autism spectrum and our families, S. 1094 would not accomplish that goal. In fact, passage of S.1094 poses a substantial risk of harming children and adults on the autism spectrum by locking in place an unbalanced set of priorities and separating autism policy from the broader scope of disability and developmental disability legislation. We urge your opposition to S. 1094 for the following reasons:
The Combating Autism Act is disability-specific legislation: Federal support of the needs of individuals on the autism spectrum should remain an important priority area – however, this support is more effectively provided through the Developmental Disabilities Assistance and Bill of Rights Act, the Americans with Disabilities Act, the Rehabilitation Act and other pieces of cross-disability legislation. Whereas disability- specific bills tend to develop constituencies of special interest groups primarily concerned with developing the “brand” of a particular condition or diagnosis, cross- disability legislation has a long history of meaningfully and effectively increasing the quality of life of individuals with all disabilities, including autism. As individuals on the autism spectrum ourselves, we believe that our needs are better met when integrated into general disability policy.
Expiration of the Combating Autism Act will not result in the loss of funding for research or services: Although the Combating Autism Act does possess certain valuable initiatives, such as the Leadership and Education in Neurodevelopmental Disorders (LEND) programs, existing statutory authority allows the Health Resources Services Administration, the National Institutes of Health and the Centers on Disease Control and Prevention to use discretionary funding to continue to support these initiatives. In fact, the LEND programs existed for over a decade prior to the passage of CAA and will continue to exist after its expiration. All of CAA’s programs which directly impact research and services can continue to be funded after expiration, should the relevant agencies choose to prioritize them.
Re-Authorizing the Combating Autism Act would lock into place a deeply imbalanced research and services agenda: According to the 2009 IACC Research Portfolio, only 3% of autism research dollars went to support research into the service- provision needs of individuals on the autism spectrum and less than 1% went into supporting the needs of adults on the autism spectrum. Much of this is due to CAA’s focus on research that looks only at the autism spectrum, whereas many of the most promising avenues of research aimed at improving the lives of individuals on the autism spectrum today apply to the broad scope of developmental disabilities. If S. 1094 is allowed to pass the Senate, this imbalance would continue for the next three years. Should CAA expire, additional flexibility will be opened up to allocate resources on the basis of need instead of diagnosis.
As an organization run by and for individuals on the autism spectrum ourselves, we are certainly willing to advocate for new legislation and funding even during a time of fiscal austerity. However, we feel that the autism and disability communities are not well-served by the passage of bills which will not positively impact the lives of individuals on the autism spectrum, our families and those with other disabilities. Instead, we urge that CAA be allowed to expire and consideration be given to incorporating the needs of individuals on the autism spectrum within the Developmental Disabilities Assistance and Bill of Rights Act and other relevant cross- disability legislation and policymaking.
As individuals with disabilities and our families struggle to set priorities in the midst of economic recession, we urge Congress to support assistance for people with disabilities that is relevant, timely and broad-based.
For more information about The Autistic Self Advocacy Network, please click here or support them by contributing to their fundraiser on November 16th.
It's September
- Anne Donnellen
- Sue Rubin
- Stephen Hinkle
- Johnny and Chris Seitz
- Darlene Hanson
- Steven Gersten
- Jeremy Sicile-Kira:
- Peyton Goddard
- Parent Panel (Rita Rubin, Emily Iland, Lisa Lieberman, Nancy Brady)
- Jordan Ackerson: Mike Hoover, Rob Cutler
- Jodi Robledo
- Steven Kapp
- Dana Commandatore
- Lars Perner
- Nick Pentzell
When Rethinking Autism is Wrong
Neurodiversity in Films
I honestly
believe that we’ve hit a turning point in the autism conversation. For
the past few years I’ve pretty much been nothing but disappointed by the
selection of autism documentaries. However, this April, I’ve been
fortunate enough to screen two films that have the ability to move the autism
conversation into a completely different direction--acceptance and
progress. I can’t even begin to tell you how happy this makes me.
I’ll start
with Loving Lampposts: Living Autistic, a film by Todd Drezner. Like many parents of newly
diagnosed children, Drezner felt the need to be proactive after hearing that
his son was diagnosed autistic. He set out across the country to meet as many
people in the autism community as possible with a camera and an open
mind. The result: a considerate, respectful and informative look
into many of the mysteries and misconceptions surrounding autism.
Drezner
introduces us to several parents of autistic kids. Some of them were
desperately searching for a cure and a reason why their child became “sick”.
Others found comfort in celebrating their child’s strengths and supporting them
in their weaknesses. Drezner’s narration is honest yet subtle. He
presents opposing sides of the autism debate without being disrespectful or
leading.
Throughout
the film there are many familiar faces from Paul Offit to Simon Baron
Cohen. Some of the most respected researchers, scientists, doctors,
parents and self advocates that support neurodiversity offer some excellent
insight into the many misconceptions about autism. People like Sharisa
Kochmeister (non-verbal but genius) Dora Raymaker (co-director of AASPIRE who
speaks via computer) and Stephen Shore (a once non-verbal child who now teaches
music to autistic children) to name a few.
Loving
Lampposts is an excellent introduction into the autism community. I’m
hoping that when a parent receives the news that their child is autistic, this
is a resource they come across when they start to search the web. It
might put their mind at ease and present hope in the form of reality.
Next I’d
like to tell you about Larry and Tracy. They are the stars of Wretches & Jabberers, the anxiously awaited autism
documentary directed by Gerardine Wurzburg. Imagine being strapped to a
bed in an institution your entire adolescence or not knowing if you had a bed
to sleep in at night. Then imagine you could not speak the words to
express the fear, loneliness and frustration—in other words, everyone presumes
you are an empty shell. Larry and Tracy experienced this and more.
It wasn’t until they were adults that they realized they could communicate
through typing.
“…dispel the
darkness around us poor wretches. Take us for real people. Don’t
sideline us.”
--Antti,
21-year-old autistic man
This is just
one of the many profound quotes from the autistic adults that Larry and Tracy
met on their visits to Finland, Sri Lanka and Japan. The film is
inspirational, funny, chaotic at times, and other times is downright
moving.
The
soundtrack was released on iTunes before the films opening to rave
reviews. There are 20 original songs by artists like Norah Jones, Stephen
Stills, Judy Collins and Ben Harper.
Please be sure to catch it in the theaters but if you
don’t, I’m sure Wretches & Jabberers will be around for a long
time. It will serve as an eye-opening education for those who presume
incompetence when introduced to an autistic adult. It encourages the
neurotypical people of the world to get to know an autistic person. And
that is a good thing.
Autreat 2011 Calls for Proposals
Autreat is a retreat-style conference
run by Autism Network
International (http://www.ani.ac), for autistic people and our
families, friends, supporters, and
interested professionals. We are
accepting presentation proposals for
Autreat 2011, to be
held Monday-Friday, August 8-12,
2011, in Johnstown, Pennsylvania
(approximately 75 miles from the
nearest major airport at Pittsburgh,
Pennsylvania).
PROPOSAL DEADLINE: May 1, 2011
FOR HELP PREPARING A PROPOSAL:
If you want to submit a proposal but
you have trouble reading these
instructions and putting your
proposal in the requested format,
contact
proposals2011 (at) autreat.com for help. Please send only plain text
messages, with no attachments.
WHAT KINDS OF WORKSHOPS ARE WANTED AT
AUTREAT?
Autreat is very different from
typical autism conferences:
WHEN PREPARING A PROPOSAL FOR
CONSIDERATION, BE AWARE THAT THE
*PRIMARY* AUDIENCE AT AUTREAT IS
AUTISTIC PEOPLE.
Parents and professionals do attend,
and most who attend find the
presentations to be of interest, but Autreat
is basically autistic
space.
Be sure your information is being
presented in a manner that is both
helpful to and respectful of autistic
people.
We expect that you will be speaking
*to* us, not speaking to
non-autistic people *about* us.
We are interested in presentations,
by either autistic or non-autistic
people, about POSITIVE WAYS OF LIVING
WITH AUTISM, about functioning
as autistic people in a neurotypical
world, and about the disability
movement and its significance for
autistic people.
We are interested in educational and
informative presentations, not in
sales pitches for a presenter´s
products or services. If you are
representing a commercial enterprise
and would like a forum to sell
products or services at Autreat,
please contact exhibitors (at)
autreat.com for information about attending Autreat as a vendor.
We are *not* interested in
presentations about how to cure, prevent,
or overcome autism.
We do *not* appreciate having
non-autistic people come into our space
to talk to each other about how
difficult we are to deal with, or how
heroic they are for putting up with
us.
If your presentation is geared toward
the interests of parents or
professionals, it should focus on
positive ways of appreciating and
supporting autistic people, not on
reinforcing
negative attitudes about autism and
autistic people.
AUTREAT AIMS TO BE WELCOMING AND
RELEVANT TO THE BROADEST POSSIBLE
CROSS-SECTION OF THE AUTISTIC
POPULATION.
Autreat is attended by autistic
people who speak and by autistic
people who do not speak;
by autistic people who communicate
fluently and by autistic people who
have limited communication;
by autistic people who live
independently and by autistic people who
need intensive support with daily living;
by autistic people who have jobs and
by autistic people who live on
disability benefits;
by autistic people who are able to
present as "socially acceptable"
and by autistic people who require
support to help them manage their
behavior;
by autistic people who have been
labeled "high-functioning" and by
autistic people who have been labeled
"low-functioning"--including
some autistic people who have had
*both* labels, at different times or
under different circumstances.
While it is not expected that any one
presentation will be of interest
to each and every autistic person, we
do look for presentations that
will appeal to the widest possible
audience.
We are *not* interested in
presentations that reinforce what we
consider to be artificial distinctions
between members of our
community who are labeled
"low-" vs."high-functioning."
A NOTE ABOUT "PERSONAL
EXPERIENCE" PRESENTATIONS:
Be aware that everyone at Autreat
either knows what it's like to be
autistic, or knows what it's like to
care about someone who is
autistic.
All of us have our own personal
stories. Presentations about the
presenters' personal stories are not
going to generate much interest,
unless you're able to use your story
in a way that will help other
people to share and understand their
own experiences in a new way.
Your proposal should describe what
participants can expect to get out
of your presentation, not just what
personal experiences you're going
to talk about.
TO LEARN MORE ABOUT PRESENTATION
TOPICS OF INTEREST
Please review the ANI web site (http://www.ani.ac) and the past
Autreat brochures (http://www.autreat.com/past-workshops.htm) to make
sure you understand ANI´s philosophy
and what Autreat is about.
If you have never attended Autreat
before, you may wish to consider
attending first, before submitting a
proposal to give a presentation.
In our experience, presentations
usually get more positive feedback
when presenters have some familiarity
with Autreat and its
participants before they give
presentations there. Active
participation in ANI´s online
community, and attendance at other
self-advocacy events run by and for
autistic
people, are other good ways to get a
feel for how Autreat is different
from typical autism conferences. If
you wish to submit a proposal and
you´ve never been to Autreat before,
please give us as much
information as possible about your
past experience
with other autistic-run activities
and events.
WHAT IS EXPECTED OF PRESENTERS?
If you submit a proposal, we expect
you to be available to attend
Autreat if we accept your proposal,
and to give your presentation on
the day and time scheduled. We make
every effort to accommodate
presenters' preferences in setting
the Autreat schedule, but it is not
always possible to give every
presenter his or her preferred time
slot.
Presenters are expected to send
advance copies of any handouts or
slides they plan to use, so that we
can prepare alternate format
copies for print-impaired attendees.
Presenters are expected to consent
for their presentations to be
recorded, and for the recordings to
be sold by Autism Network
International.
Presenters are invited to attend all
of Autreat. If presenters opt not
to attend the entire event, they are
expected to arrive on-site by
8:30 a.m. for afternoon
presentations, and to arrive the night before
for morning presentations.
Please be prepared to meet these
expectations if you decide to submit
a proposal.
Presenters are also encouraged to
submit an article on their topic for
inclusion in the program book. Like
handouts and visual aids, articles
need to be submitted in a timely
manner so we can prepare copies in
alternate formats.
WHAT'S IN IT FOR THE PRESENTERS?
Individual Autreat presenters receive
free registration for Autreat,
including on-site meals and lodging
in a shared (2-person) room. (A
private room may be available at the
presenter´s own expense.) This free
registration is for the presenter
*only*, not for a presenter´s family
members or support staff.
In the case of panel presentations
consisting of three or more
presenters, we offer one complete
four-day Autreat registration, plus
a single-day registration (including
three meals and one overnight, if
desired) for each additional
panelist. Therefore, a panel of X
presenters is entitled to a total of
4+(X-1) free days/overnights.
Panelists may divide these free days
amongst their members as they
wish. Panel presenters are of course
welcome to register and stay for
additional days if they wish.
ANI is a volunteer-run,
member-supported grassroots organization with
minimal funding. We cannot reimburse
for off-site expenses, nor can we
pay travel expenses or honoraria. If
your proposal is accepted, we
will send you a formal letter of
invitation if this
would help you in raising your own
travel funds.
Presenters are entitled to receive
one free copy of the recording of
their presentations.
PROPOSALS SHOULD INCLUDE:
* Your name and title (if any)
exactly as you want them listed in
program materials should your
proposal be accepted
* Contact information (address,
phone, fax and/or email if you have them)
* Title of your proposed presentation
* Detailed description for
consideration by the Planning Committee
* Brief (5 sentences or less)
abstract exactly as you want it listed
in program materials should your
proposal be accepted
* Indicate ONE theme that BEST
relates to your proposed presentation:
[ ] Advocacy skills
[ ] Life skills/adaptive strategies
[ ] Helpful support services
[ ] Communication
[ ] Social/interpersonal issues
[ ]
Personal/self-awareness/self-development issues
[ ] Autistic community and culture
[ ] Education
[ ] Employment
[ ] Family issues
[ ] Residential issues
[ ] Disability rights and politics
[ ] Autism research and theory
[ ] Other (describe):
* Indicate which group(s) you believe
would find your proposed
presentation of interest. Check as
many as apply. Briefly describe
what your presentation would offer to
each group:
[ ] Autistic adults
[ ] Autistic teenagers
[ ] Family members of autistic people
[ ] Educators
[ ] Clinicians
[ ] Service providers
[ ] Other (specify):
* Brief (5 sentences or less)
presenter bio exactly as you want it
listed in program materials should
your proposal be accepted
* Any audiovisual equipment you would
need for your presentation
If you have never presented at
Autreat before, please also include an
introduction for the Planning
Committee summarizing your relevant
experience, including any
presentations or other education/advocacy
activities elsewhere, and the nature
of your interest in autism and/or
in general disability issues.
PROPOSAL DEADLINE:
May 1, 2011
HOW TO SUBMIT A PROPOSAL
Proposals can be submitted via email
to proposals2011 (at) autreat.com,
or submitted online at http://www.ani.ac/aut11cfp.php ,
or sent via postal mail to
Autism Network International
P.O. Box 35448
Syracuse NY 13235
USA
When your proposal is received via
the online form, you will be sent a
brief acknowledgment confirming that
we have received your proposal.
If you have not received this
confirmation within 48 hours of
submitting your proposal, then we may
not have
received your proposal! If you
haven´t received confirmation within 48
hours, please contact proposals2011
(at) autreat.com and let us know.
Please save a copy of your proposal,
so you can resend it if
necessary.
WHAT IF I DON'T WANT TO PRESENT, BUT
I HAVE AN IDEA FOR A PRESENTATION
I'D LIKE TO SEE?
If you want to make suggestions for
Autreat presentations, or make
comments about previous presentations
or presenters, please fill out
the questionnaire available at http://www.ani.ac/autplan2.php .
WHAT IF I WANT MORE INFORMATION ABOUT
AUTREAT?
You can find a lot of general
information, including a link to join the Autreat
Information mailing list, at http://www.autreat.com . If you have
specific questions and can't find the
answers on the web page, you may
send email to info (at) autreat.com.
Autism and Chemical Castration by Rachel Prevatt
Please
welcome Rachel. She is an advocate and teacher of sex and relationship
education to people with disabilities.
Lupron
(chemical castration) “therapy” for autistic children is back in the news. You
can read here all about why this doesn't work,
doesn't make sense, and puts these children at risk, from a scientific/medical
point of view. I'm not a doctor, so I'll leave them to that piece. But I
am an advocate, a teacher of sex and relationship education to people with
disabilities, a family member and friend of people with developmental
disabilities, including several people with ASD. And from that standpoint, I
have something to say about this fresh horror being visited upon autistic
children, at the hands of hucksters selling the new snake oil cure to
exhausted, frustrated, desperate parents who are looking for anything that even
appears to improve their child's life. But these parents need to know, and we
need to tell them, this is not the way!
Newsflash:
autistic children hit puberty too.
But
let's go back even further than that. Human beings, from birth, are sexual
beings. Now, before you freak out, let me be clear: children are not and should
not be the subject of adult sexuality or participate in adult sexual behavior.
That said, anyone who's spent a significant amount of time with small children
can probably testify to the fact that children, even babies, will seek out ways
to stimulate themselves. Are they doing this because they have some freakish
sexual desire or drive? Of course not. It feels good. So what do we do when
this happens? Well, sadly, some people freak out and punish their children, but
sensible parents redirect and explain the difference between public and private
behavior. To my knowledge, when neurotypical children inappropriately express
themselves sexually, doctors do not offer chemical castration as a solution.
And yet, when an autistic child, hell when a teenager or dependent autistic
adult, acts out sexually, you can find a doctor to effectively neuter that
child.
Are we going to start chemically castrating every child that
exhibits "inappropriate" sexual expression? This is monstrous,
frankly equally monstrous to out and out eugenic measures like physical castration,
and is, in part, the natural conclusion of the infantilization and subjugation
of people with disabilities. These are behavioral issues and need to be dealt
with through behavioral programs; unfortunately too many parents refuse to
acknowledge that part of dealing with inappropriate sexual expression is
allowing appropriate sexual expression. "Don't touch your penis" is
NEVER going to work; "find a private place and an appropriate time to
touch your penis" will do wonders. Imagine being an adolescent, with all
the hormonal and sexual chaos that comes with that, and additionally having
sensory, communication, impulse control and/or social difficulties, maybe you
even have obsessive-compulsive disorder. Now imagine that any time that you try
to express the sexual impulses that come with that, you're shamed, shouted at,
grabbed or otherwise interfered with, without redirection or explanation.
You're simply WRONG. You're going to develop some inappropriate behavior,
right? This is what many children with developmental disabilities, including
autism, face. A world where there is no safe, appropriate outlet for their
sexuality because the people who care for them are either unwilling to
acknowledge or incapable of addressing in a healthy way their natural, human
needs.
We need to stop trying to deny that people with disabilities are people
and start teaching them how to meet their needs in appropriate ways. But that
involves a lot of work on the parts of parents, educators and caretakers, in
terms of respecting privacy and agency, and honestly that's probably where a
large part of the barrier is. We, as advocates, need to understand that we
cannot treat people with disabilities as though they are neuter, or perpetual
children, even if that is the easiest way for us to perceive their situation.
One thing that has worked in bringing over parents to understanding this is
pointing out that teaching their children about appropriate sexual expression
actually helps protect them from sexual abuse. Sadly, 80% of females and
60% of males with disabilities report being victims of sexual abuse. If a
person understands what is appropriate and what is not, if a person does not
think all sexual experience is instantly bad and/or shameful, they are much
more likely to know when and what to report and why.
You
can't erase sexuality, but you can frame it in a safe, appropriate and healthy
way. You can offer privacy to children in a place where you know that they are
safe. You can offer direction as to when and where it is appropriate to touch
oneself. You can modify the same sexual education information that you would
offer to a neurotypical child to convey it in more applicable ways. Because,
when we get right down to it, these children are not deviants or animals or
freaks. They're children, struggling with the same issues of sexual expression
as any other child, but further locked in not only by their disability (i.e.
impulse control issues, sensory issues, communication issues, social issues,
comorbid OCD, etc), but by the unrealistic expectations they often face.
Unfortunately, some folks, like Dr Geier, would rather profit on selling parents snake oil, and letting
them believe that inappropriate sexual expression and aggression are simply
inherent to having autism, and the only solution is to “cure” the autism,
through pseudo-scientific treatments that, at best, only serve to zombify the
child by shutting down their hormone production.
Now,
I know that saying, “redirect and offer appropriate outlets”, isn't magic. It's
hard, frustrating, sometimes heartbreaking work. It can require so much
repetition, all while having to fight your own natural reactions like
embarrassment or exhaustion. And simply allowing appropriate outlets isn't
going to remove the need for redirection and intervention overnight. Teaching
takes time, and teaching to a child whose brain functions in very different
ways than your own takes even more time, it seems. I would never ever suggest
that parenting is easy, and I certainly wouldn't suggest that there are any
easy answers to parenting an autistic child. The demands of time and effort and
dedication are enormous and there is so much that I cannot know, because I do
not live it. But there are things we do know and must accept. First and
foremost, those dangerous, unproven treatments that deny the humanity, and
sexuality, of autistic people are simply unacceptable. That it is no more
acceptable to chemically neuter your autistic child than it is to chemically
neuter a neurotypical child. The appropriate, healthy, loving, ethical path of
respectful and realistic behavioral programming may not be the easy one. But it
is the right one. And, believing that parents of autistic children act out of
love and what they see as the best interest of their children, I believe that
we must appeal to these parents' love, and their dedication to understanding,
and show them that these paths are not only unproven, unproven and dangerous,
but also simply not what is best for the dignity and well-being of their
children as human beings.
The
fact that these things are generally done with the best intentions of the
parents are why we need to go hard at the quacks out there who are selling
parents snake oil to "cure" their children and acting out unethical
treatment and straight up abuse in the process. Parents want help, seek it out
even when the economic and emotional tolls seem unbearable, and in some cases
are so seduced by the false promise of a “cure” to make their child “normal”
that they can be brought in to treatments and philosophies that are dangerous
pseudoscience; pseudoscience fed by the greed of those who profit from the
“cures” and “treatments” they offer. These people need to lose their licenses
and their credibility until autism research and treatment is reclaimed to the
ends of respect and dignity, empiricism and sound, rational courses of action,
instead of popular hysteria fomented by charlatans like Dr. Wakefield, Dr.
Geier and Jenny McCarthy. Parents are desperate for understanding and help, the
medical and mental health establishments should be trying harder to make sure
they're getting sound advice and not being conned into participating in and/or
endorsing the torture of their children, even, perhaps especially, when the
torture does seem to “work.” You don't need to have all the answers to know
that THIS is NOT the answer.
