Here's a somber statistic: Individuals with intellectual and developmental disabilities are far more likely to be abused by someone they know than a stranger.
Abuse is any behavior that is unwanted, intentionally harmful, demeaning or insulting, or causes the victim to be afraid. This may include physical violence, sexual assault, bullying, emotional maltreatment or neglect.
Sadly, because an individual with intellectual and developmental disability may be perceived as an “easy target,” the likelihood of abuse is four to 10 times higher than in typically developing peers. The abuse is more likely to occur repeatedly, over longer periods of time, and is presumed to be underrecognized and underreported.*
Alyssa Siegel, MD, offers parents and guardians tips to keep children with special needs safer from abuse, how to prevent abuse, and what to do if your child does suffer from abuse.
Know your child’s contacts
Get to know all the people who work with your child at home, school, therapy sessions and recreational activities. For caregivers or therapists that you hire privately, gather as much information as possible, including educational, employment and criminal history.
If they worked for reputable institutions, it is likely that thorough background checks were done at that time. Investigate references to assure satisfaction in previous employment and departure on good terms. If the position requires professional certification, verify authentic licensure. Be sure that the prospective hire can explain any time gaps on his or her resume.
For center-based staff, including teachers, make impromptu visits and observe interactions before your child knows you are present.
Educate your child early
Talk to your child about boundaries with regards to words and touch. Revisit important concepts as your child’s developmental ability and level of understanding changes. Outline the roles of the adults in your child’s life and explain how they are expected to speak and behave with your child.
Review forms of discipline, who can impose a punishment, and what types of punishments are acceptable. Review the correct names of body parts. Indicate which body parts are private and when/where touching is OK. Talk about when and where it is OK to remove clothing or show private body parts.
Recently, pictures that demonstrate acts of abuse and sexual anatomy have been added to some communication boards used by non-verbal individuals to help them understand and disclose acts of abuse.
Describe sexual abuse in all its forms
Sexual abuse can include inappropriate talk, touch, or pictures, as well as being asked or forced to say, show or do something that is uncomfortable. Be sure to discuss that unwanted behavior can come from someone you child knows or a stranger. Talk about how to recognize whether sexual feelings are mutual or one-sided. Explain your child’s domain over her own body and her right to say “No” to anything that feels intrusive.
Promote a ‘no secrets’ policy at home
Create a comfortable and supportive environment for your child to communicate openly. As your child gets older, this should include open discussions about romantic feelings, sexual urges and relationships. Reinforce that being the victim of unwanted behavior is not a secret, even if the child has promised not to tell.
Recognize signs of abuse
Evidence of abuse may be either physical or behavioral. Be sure that there is a plausible explanation for any marks or bruises, broken bones or head injuries. Behavior changes may be subtle and non-specific, but changes in mood, eating habits or sleep, avoidance of school or social situations, or change in response to a specific place or person, may be worrisome.
Abuse may also cause a halt or regression in academic or social progress. Do not accept the suggestion that unusual new behaviors are “part of Down syndrome.” If you are concerned, or not quite sure if you should be, speak to your primary care physician for immediate guidance.
Don’t underestimate advocacy
Advocacy organizations, such as The Arc, strive to educate families and the general public about issues important to individuals with Down syndrome and are champions for improved public policy at federal and local levels. The community of parents, medical, legal and educational professionals that dedicate their efforts to expose and address abuse should continue to receive support.
The increase in opportunities for self-advocacy has also empowered teens and young adults with Down syndrome to show the world their strengths and hear their voices. These efforts help to diminish the perceived imbalance of power that abusers exploit as they target individuals with Down syndrome.
* AUTHOR'S NOTE: Information regarding abuse of victims with intellectual and developmental disability is not further subdivided to isolate individuals with Down syndrome. Individuals with Down syndrome are statistically more likely to live with family members than in residential facilities, perhaps conferring a safer environment, hence a lower risk for abuse, than the broader constituency.
Alyssa Siegel, MD, is an attending physician at the Children’s Hospital of Philadelphia. Her article was originally published on Sept. 20, 2018, by Children’s Hospital of Philadelphia’s Trisomy 21 Program. Read “Preventing Abuse of Your Special Needs Child.”
