A special vulnerability
Sex and social issues pose challenges for
developmentally disabled teens
BY LIZA N. BURBY
Special to Newsday
July 18, 2006
Last September, a 16-year-old Selden girl in a wheelchair reported
being sexually molested by a store manager in a shopping center
parking lot.
Her mother says the teenager has PDD, or pervasive developmental
disorder - a form of autism that causes difficulty processing social
interactions - as well as a neuromuscular disorder. Because there's
a criminal case pending against the store employee, the girl's
mother doesn't want their names revealed. But she says it was her
daughter's PDD that made her particularly vulnerable.
"My daughter wants to be like everyone else, and the way he spoke to
her made her think he wanted to be her boyfriend," she says. "He had
tried to get her to go in his car, but she wouldn't go. I had always
talked to her about not getting in strange cars, so I guess she
remembered that. It's the other thing that I hadn't talked about,
how to protect herself from abuse, because it hadn't occurred to me
it would ever be an issue because I'm almost always with her."
Like many teens on the autism spectrum, who tend to be literal and
concrete, the 16-year-old had taken the warnings about cars
seriously, but she didn't have the social skills to refuse the man's
physical attentions.
Studies have found that young people with autism disabilities are
particularly vulnerable to unwanted sexual attention, according to
Lisa Mitchell, who coordinates the sexuality and reproductive health
program at the Cody Center for Autism and Developmental Disabilities
at Stony Brook University in Port Jefferson Station.
Individuals with other developmental disabilities such as mental
retardation, cerebral palsy or seizure disorders often share the
same deficits in social judgment, she says.
Though these youths enter puberty at the same time as their
typically functioning peers and have the same sexual impulses and
feelings, Mitchell says, their disabilities often inhibit their
ability to react in a self-protective way. In addition, often their
parents wait to discuss these issues in part because the teens are
emotionally immature for their chronological age, or because parents
simply aren't sure what to tell them, says Pamela Boyle, clinical
consultant for sexuality services for the Association for the Help
of Retarded Children of Nassau County.
Nevertheless, Mitchell says research has shown that approximately 61
percent of females and 25 percent of males with developmental
disabilities will be sexually molested by age 18. Between 15,000 and
19,000 individuals with developmental disabilities are raped each
year in the United States. The majority of the victims know their
abusers.
Further, these adolescents are also more likely to be the victims of
sexual harassment, teasing and exploitation. Mitchell says unwanted
pregnancies and sexually transmitted diseases and HIV also are
issues for this population - just as they are for typically
functioning teens. But too often developmentally disabled teens
aren't given information about birth control or screened for STDs
"because most people don't think they have sexual needs and think of
them as perpetual children," says Virginia Cover, a developmental
officer for the Cody Center.
Yet these teens are being educated about sexuality through the media
and at school, says Perry Samowitz, director of education and
training for the YAI/National Institute for People with Disabilities
Network in New York. "But they're getting misinformation, and that
makes it worse for them since they have difficulty deciphering
what's real and what's not," he adds.
Low emotional understanding
The core impairment of autism is the inability to process and
understand social and emotional aspects of communication. Along with
this are deficits in taking perspective, and all of these are key
components of relationships, says Gina Muscillo, who coordinates
language and school-based services at the Fay J. Lindner Center for
Autism of the North Shore-LIJ Health System in Bethpage. "Typically
functioning adolescents know better how to read the warning signs
and how to get out of dangerous situations. But our children are
naïve and don't derive meaning from context as easily."
Depending on the level of their disability, Muscillo says, some are
unable to communicate verbally. But even high-functioning, verbal
teens with Asperger's syndrome have difficulty understanding hidden
meanings or the implications of comments and behaviors of others.
"Because of this, they don't necessarily recognize what is happening
in social situations. They're not aware of other people's intentions
and what the other person is doing, and this elevates their risk
factors," Muscillo says. "If you're nonverbal, you can't express
what someone has done to you. But even kids who are very verbal - if
you can't read gestures and facial expressions, you have no way to
respond, no way to know what the other person is doing."
In addition to the language barrier, there's also the
psycho-emotional issue, says Shana Nichols, PhD, senior psychologist
of the Linder Center, who with Muscillo is running a summer program
for teen girls, Girls Growing Up.
"They seem to have difficulty with their own body awareness, like
reading body signs, how their own body responds," Nichols says.
"Their hearts could be racing, but they may not be aware of the
physiological responses to fear, like sweating and shaking. When
they learn to pay attention to this, they can be more aware of when
to call for help and develop the skills to do so."
Increased victimization
The result is that teens with developmental disabilities are more
likely than other teens to be victimized in social settings.
Muscillo says molestation and sexual abuse are the pronounced cases,
but subtle situations are just as damaging to this population,
particularly kids in mainstream school settings. The scenarios
include teasing and being set up for humiliation, which she says is
also a form of sexual harassment.
A North Massapequa mother of a 17-year-old with Asperger's (those
with the syndrome have normal IQs) says that when her daughter
started developing physically in sixth grade, she endured cruel
pranks and sexual harassment from both boys and girls in her school.
"They wrote curses in her locker. A neighbor on the bus talked to
her about explicit sexual acts, followed her and teased her. Girls
called her 'coconut girl' because she was well developed," says the
mother, who didn't want to be identified for her daughter's sake.
"It continued through middle school. As a result, she suffered from
severe depression. When she switched schools it got better. But
because of what the boys had said to her, I had to explain things to
her I hadn't planned on."
Mitchell says boys have difficulties too. "Especially kids in a
mainstream school environment often experience social belittling.
Sometimes, girls feign interest to humiliate the boys," she says.
"But the boys have to be careful about how they present themselves,
because sometimes they fixate on a particular girl. They don't
intend to hurt anyone, but they can get accused of stalking."
And because most of these teens want to be in the same relationships
they see typically functioning teens experience, some use sex as a
way to get others to like them, she adds.
As with typically developing teens, says David Makowski, social
relationships are important for those with disabilities, because
they help boost self-esteem. "However, the lack of friendships and
social alienation that many people with developmental disabilities
experience may place them at greater risk for psychological
problems, excessive anxiety, sadness and depression," adds Makowski,
director of school consultation services at the Cody Center and a
psychologist in pediatrics at Stony Brook University Hospital. "They
want to have friendships and relationships but often don't have the
skills to develop and maintain social relationships."
Tips for basic safety
But Samowitz, of the disabilities network, says they can protect
themselves if they're taught the specifics of how to do so through
psychosexual education.
Local programs work specifically on naming body parts and learning
about personal boundaries, inappropriate touching and private versus
public behaviors. Lessons are often visual rather than verbal, for
easier processing. Higher concepts like flirting, safe and unsafe
dates and hygiene are also taught for those who want to date.
But discussions also have to begin at home. Boyle, of the
association for the retarded, says parents and caregivers should
start when their children are young. "Kids need to know early that
it's not OK for people to touch you or to invade your space or for
you to do it to others," she says. "Look to your child's
chronological age for what they need to know. Their intellectual
ability may not keep up with their hormones, but always keep in mind
what they would need to know if they didn't have challenges."
Zosia Zaks, author of "Life and Love: Positive Strategies for
Autistic Adults" (Autism Asperger Publishing Co., $34.95), says
there are specific strategies to help teens cope with social
situations. "The first is to turn to others. It's not something
autistic kids tend to do, but it's important to teach them that in a
social situation, they should check in with someone they trust,
because they might point out something to them they hadn't noticed,"
Zaks says.
"Next, have them use the buddy system. It's OK to go on a date, but
see if your friend wants to go, since there's safety in numbers. And
have a safe-activities list, like the library, diner or community
pool, to steer to activities that are presumably safer. The point is
that they need to understand they can be in control of their safety,
but they have to have a plan."
But Zaks says that beyond all the strategies and the fears for their
safety, it's a positive sign when developmentally disabled teens
become social.
"Today, many autistic children grow up with a lot of support, so
they do have the ability to be out in the world," she says. "It's a
good thing that they want to be in social settings. We just have to
work with them so they can make positive choices."
WHERE TO GET HELP
Programs that deal specifically with sexuality for developmentally
disabled adolescents and young adults:
Sexuality and Reproductive Health Program at the Matt and Debra Cody
Center for Autism and Developmental Disabilities at Stony Brook
University: Offerings include information on social skills and
reproductive health; prevention and screening for sexually
transmitted infections including HIV; annual gynecological exams
including Pap smears, breast examinations with breast
self-examination education; testicular exams with testicular
self-examination education. Family planning services are also
offered. Call Lisa Mitchell at 631-632-3147 or -3070; www.cody
center.org.
The Fay J. Lindner Center for Autism has group speech and language
therapy for preteens and teens. In addition, Girls Growing Up is a
six-week program for families of high-functioning girls ages 14 to
17. The preteen and teen groups often include topics about growing
up, relationships and puberty. Psycho-education and skill-building
groups related to these topics are offered for parents of youths
ages 9 to 18 with autism disorders at all levels of functioning.
Shana Nichols, psychologist at the center, also offers workshops and
home and school-based consultation on sexuality and puberty. Call
516-802-8600 or visit www.nslij.com/autism.
Asperger's Syndrome and Higher-Functioning Autism Association of New
York in Bethpage provides support and education for families,
individuals and professionals affected by Asperger's syndrome,
high-functioning autism and other pervasive developmental disorders.
There is a group for teens. Call 516-470-0360; www.aha-as-pdd.org.
Association for the Help of Retarded Children of Nassau County: Call
for referrals or ask to speak to clinical services to request
information on this topic. Call the Plainview office at
516-293-2016; www.ahrc.org. In Suffolk call 631-585-0100;
www.ahrcsuffolk.org.
YAI/National Institute for People with Disabilities Network has
groups for teens and young adults on social and sexual issues in New
York City, as well as Friday night recreation for teens and young
adults 16 and older. Call 212-273-6312; www.yai.org. - LIZA N. BURBY
Copyright 2006 Newsday Inc.
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