Sexuality and Abuse in ID Population

 

About five and a half years ago, I wrote up a blog on Abuse Prevention based on a workshop I went to. I had the opportunity to attend another training recently, put on by the SAFE Alliance (Stop Abuse For Everyone). For simplicity's sake, I will be focusing on the Intellectual Disability population when talking about sexuality and abuse. (Prepare yourself, this can be a heavy topic)

SEXUALITY MYTHS

First, let's dispel a couple myths about individuals with disabilities and sexuality:

MYTH: If people don't talk about love/ sex, they are not sexual

Not true! There are lots of different ways that desire is manifested. 

MYTH: If parents don't think their child is ready to date, they don't need sex education

False again! Sex education needs to come based on a person's biological age, not their intellectual age. Biology happens to us all!

MYTH: Separating boys and girls during sex education is the factor that will make students most comfortable.

Okay, this one tricked me during class. I wasn't sure about it when my class was asked, and the answer is actually false! The universal #1 factor in what made students comfortable during sex education is how relaxed the instructor is. Once that was explained, I agreed. 

MYTH: People with disabilities don't have sexual desires

That is right, FALSE yet again! Very often, the disabled population is de-sexualized. People assume that if a person has an intellectual disability, there are no sexual desires. But that is wrong. Remember what I said about biological age? Still true! Those hormones will kick in, regardless of your IQ. 

MYTH: People are safer when they don't date.

Wrong again. The disabled population is at an extremely high risk for abuse. I went into that a bit more in the old blog, and will touch on it later. 

So, with all those myths, what DO we do? How can we keep our kids with Intellectual Disability safe? 

1. BUILD RELATIONSHIPS!!! Far and away the best thing to keep your child safe is to help them build friendships and healthy relationships with trusted peers and adults. Everyone needs a community support network to rely on. If a person with a disability only has one or two people in their life, and one of those people abuses them, who would they turn to? Create and maintain strong relationships and friendships! Victims of abuse are MUCH more likely to confide in a trusted adult as opposed to a counselor or crisis hotline.

2. Encourage self-determination! Self-determination means the belief that you can and will control your own life. It is fueled by the knowledge that you have options available, and can make choices for yourself. If you know that you are not stuck with only one option and have the agency to choose something else, you will feel empowered to determine the course of your own life.

3. Teach Self-Advocacy! One of the reasons as to why people with Intellectual Disability are so easy to abuse is the compliance training that they are taught. 'Obey people giving you instructions, always.' This philosophy, well-meaning and intended to reduce problem behaviors, also harms a person's ability to identify boundaries and advocate for themselves. Self-advocacy is crucial for safety. Give them the ability to say NO and respect it!

3b. Note on NO: What if my child is saying NO, but they still have to do something? What if they have to take a bath, clean up toys, or have a diaper changed? It is for their own hygiene/ safety, and I do expect them to do their chores. What then?

In that situation, acknowledge you hear their no, then explain the reasoning behind what you are requiring of them, and let them know ahead of time what you will be doing "I hear you saying no, but I have to wipe your bum to get all the poop off so you don't get sick." Encourage their participation as much as possible to help them develop autonomy. 

4. Practice Physical Affection Boundaries: Let your child dictate when they are willing to give consent. This goes for hugs, kisses, touching, sharing, borrowing, and secrets. Ask for permission for these things "Do you want a hug?" to give them the opportunity to say yes or no with optional things, particularly related to physical affection, privacy, and personal boundaries. Healthy relationships never take away someone's choice. Boundary building doesn't happen over night, so you need consistent practice, repetition, and time.

Cool/ Not Cool Game

I am excited to look at the curriculum that the SAFE Alliance is putting out soon. We trialed an easy game to play with kids to help them learn what some healthy boundaries are. You introduce a scenario, and then have your kids do thumbs up for "Cool" or thumbs down for "Not Cool."

Some sample situations:

• Your romantic partner says "Don't eat cake or you will get fat!" (not cool)
• Your job coach yells at you because you made a mistake at work (not cool)
• You are having a bad day, and a friend asks to give you a hug (cool)
• Your friend slaps your butt and when you get upset, they say it was just a joke (not cool)

Practice situations like that and role play what to do. 

ABUSE AND DISABILITIES

Now we get into the heavier topic- abuse. 

Scary Stats:

• More than 70% of people with IDD have been victims of abuse
• Most who were abused experienced that abuse on more than 20 occasions
• Less than half of those incidents were reported, and of those reported, only 10% of reported incidents led to an arrest
• Women with IDD have a 7x higher risk of being sexually assaulted
• Men with IDD have a 1.5x higher risk of being sexually assaulted
• 97-99% of victims knew and trusted their abuser
• 44% of victims had a relationship with the abuser specifically due to disability (hired caregiver, aide, etc)
• Abuse can occur anywhere, but is especially high in institutional settings

Why Such a Higher Risk of Abuse?

• Learned compliance
• Lack of privacy
• Lack of awareness
• Isolation
• Extended periods alone with one person

Indicators of Sexual Assault, Abuse, Exploitation (Youth)

• Signs of physical abuse- headaches, stomachaches, bruising, etc.
• Increased fear and distrust
• Change in mood or appetite 
• Loss of skills
• Denial
• Angry outbursts
• Anxiety
• Sleep disruption
• Nightmares
• Distracted/ distraught
• Sudden change in appetite 
• Refusal to talk about a secret
• Writes/ draws/ plays of a sexual nature
• Suddenly has money, toys, or gifts without reason (part of the grooming process)
• Think of body as repulsive or dirty or bad
• Exhibits adult-like sexual behaviors, language, and knowledge
• Sudden mood swings

Tips for Preventing Assault:

• Maintain a 2 adult present rule for your child. Write into your child's IEP that you need two adults within viewing distance of your child at all times 
• Get training for yourself
• Coordinate a training for your child's school/ staff. If they know you are aware and watching for signs of abuse, the likelihood of abuse decreases drastically (because there is nothing scarier than the parent whose disabled child has been wronged)
• Build a community of strong, healthy relationships for your child
• Help your child practice healthy boundaries

HELP! My Baby Was Just Diagnosed with a Rare Disorder!

See if this scenario sounds familiar: A doctor tells new parents that some of their baby's tests have come back with abnormal results, and that their baby has been diagnosed with a rare disorder. The doctor is not familiar with this syndrome because of how rare it is, so gives the family the name of the disorder, maybe a little basic information from a medical website, then tells them to schedule with a genetic counselor/ geneticist, and leaves it at that.

So the parents leave the office, stare at their baby, and then burst into tears. They never expected that their sweet baby would have any medical struggles. What did all this mean? They need answers, and they need them NOW!

So they rush to ask dear Dr. Google all the questions. What is (fill in the blank Disorder)? Everything they read terrifies them, and the whole experience feels surreal. They find a tiny website dedicated to this syndrome, as well as a small facebook parent support group and join immediately, often before they even have told their own family. They ask the parents in that support group what to expect. They want to take a glimpse into the lives of other families living with the same condition and to get an idea for the prognosis for their child.

And then, something incredible happens. They become an instant member of a new family. The community surrounds them with love and support. The other parents tell stories about their own family member with the same diagnosis. They share encouraging stories of success, some ideas of what to expect, send "Welcome to Holland" to the new family, and the parents cry all over again. 

So then the parents research and research and research some more. They feel like they have to learn everything RIGHT NOW! Speech therapy, MRIs, g-tubes, physical therapy, DEXA scans... 

The family goes through wave after wave of emotion. They sometimes feel empowered and ready to change the world for their child. Other times, they feel like they can't even get out of bed. Some days, they get angry at the world and feel jealous of the other families who don't have endless doctor and therapy visits. 

All of that is normal. It is part of the Grief Cycle, and the parents will learn about it more and more over the years. They slowly learn that it isn't a process where there is a start at Denial and end at Acceptance, but a circle that goes around and around. Eventually, they will spend most of their time in Acceptance. But it takes time to get there. And that is okay. 

At first, the parents will feel overwhelmed. There is so much to learn! Their child has a team of doctors whose specialty the parents struggle to pronounce, there are medications and tests and labs to keep track of, they have no idea what IEP, EI, ADA, and IDEA mean, and they think an Occupational Therapist is someone who helps you with your career. Medicaid vs Medicare? What is the difference? What on earth are waiver wait lists for services?

But with the help of their newly discovered support community, the new family figures it out. They get used to therapy appointments, handle EEGs like a pro, and take a million pictures of their adorable baby. They look into that baby's eyes and realize that they would do anything for them. So yes, life looks a little different now, but that is okay. Grief still comes and goes at times, but the family learns to appreciate life in a way that never would have been possible otherwise.

That new community that accepted and helped them immediately? They are like family now. They cheer on each other's successes, and commiserate over struggles. As their baby grows and develops, they realize that they love this life they have been given. And one day, when they pop onto that support group, they see a new family asking "My baby was just diagnosed with this condition! What do we do?" and they realize they have the answers and are ready to help. 

A Couple Tips for Newly Diagnosed Families:

1. Look up your local Early Intervention program. They will have lots of resources in your area for you.

2. Contact your state's Parent to Parent (sometimes called Family to Family) network and get a mentor to help you. They can walk you through Medicaid waivers and insurance and finding specialists

3. Enjoy your baby! Every new life is to be celebrated, and I am sure you already know that. Your baby will bring you so much joy that you will not be able to imagine life without them.