A friend recently posted about a gentleman in his 60’s I think, who was losing the ability to speak, slowly but definitely. “A cruel fate”, he called it. Rett syndrome parents can relate to such a statement.
I believe Trofinetide will be the magic wand that reverses time and gives back those voices stolen away from our children. That it will be the saving grace from THIS….
“Although violent crime has declined in the United States over the past several years, people with developmental disabilities remain at disproportionately high risk for violent victimization, abuse and neglect (Petersilia et al., 2001). While the scientific evidence continues to be limited, international studies from Canada, Australia, Great Britain, and the United States have documented high rates of violence and abuse affecting people with disabilities (Ibid.). Experts conservatively estimate that people with disabilities are at least four times more likely to be victimized than people without disabilities (Sobsey, 1994; Toronto Star, 1990). Individuals with an intellectual impairment are at the highest risk of victimization (c.f., Sobsey & Doe, 1991).
Some studies estimate that close to 80% of women with developmental disabilities have been sexually assaulted at some point in their lives (Sorensen, 2002; Lumley and Miltenberger, 1997). Other studies have found the rate for sexual assault was anywhere between 2-10 times higher for people with disabilities when compared to people without disabilities (Wilson & Brewer, 1992; Baladerian, 1991; Muccigrosso, 1991; Westat Inc, 1993).
Similar findings have been documented from studies of Californians with disabilities. Hard (1986) found that, of 95 adult Californians with developmental disabilities surveyed, 83% of the women and 32% of the men had been sexually assaulted. A later study of San Francisco Bay area residents with mild mental retardation found that nearly 80% of the women and 54% of the men had been sexually abused at least once (Stromsness, 1993). While many feel that living in the community carries inherent risks, it is notable that some studies have found that crime rates are higher for victims with disabilities in institutions, group homes and other segregated facilities (Sobsey & Mansell, 1990; Roeher Inst., 1994).
Adding to these alarming incidence rates, studies show that people with disabilities are more likely to experience more severe abuse, experience abuse for a longer duration, be victims of multiple episodes, and be victims of a larger number of perpetrators (Schaller & Fieberg, 1998; Sobsey & Doe, 1991; Young et al., 1997).”
And it’s heartbreaking to know THIS…
“Regardless of the type of disability or whether the abuse is emotional, physical, or sexual, people who provide care and support to individuals with disabilities are often the same people who victimize them – people the victims know and trust (Petersilia et al., 2001; Nosek et al, 1997; Marchetti & McCartney, 1990). It is estimated that risk of abuse increases by 78% due to the vulnerability of people with developmental disabilities and their need for personal assistance services (c.f., Sobsey and Doe, 1991; Young et al., 1997; Curry & Powers, 1999). In a survey of individuals with disabilities who had been abused, 96% of the cases involved perpetrators who were known to their victim (Sobsey and Doe, 1991).”
(the above is copyrighted and taken directly from “A report of: Protection and Advocacy, Inc. State Council on Developmental Disabilities USC University Affiliated Program The Tarjan Center for Developmental Disabilities, UCLA”
Coupled with those horrifying statistics is THIS…
“Two main arguments are made with regard to children with autism and risk for sexual abuse. First, some children with autism may be targeted for abuse by sexual offenders who may view them as vulnerable children. Second, when children with autism are sexually abused, they may show this in ways that get ignored or misattributed to autism rather than to possible sexual abuse… (and)… In order for a valid determination to be made regarding whether or not sexual abuse has occurred, the child has to be able to participate effectively in the entire evaluation” taken from Disability Studies Quarterly
And such are the challenges faced not only by non-verbal children but their parents as well, because one of the most evident signs of something being wrong is behavior. The only way to communicate for many non-verbal children is often attributed to their disorder, regardless of how sudden or drastic a change.
Advocacy in this area is deplorable. Training of professionals that should be able to break through these barriers is deplorable. And so the voices that are desperate to speak for disabled children and adults are silenced right along with the victim’s.
In the case of Rett syndrome and Fragile X, though, there is a glimmer of Hope in Trofinetide, to give back what was lost, not only a voice, but protection, justice and above all safety.
Sobering statistics, indeed.