It is true that parents of children and adults with ASD, if asked, will admit to having long-held fears that their child may become a victim of abuse. However, it is also true that when I have provided classes for parents of young and adult children with autism at Los Angeles-based Regional Centers (case management and support agencies for people with intellectual and developmental disabilities), few show up. Whereas the classroom may hold up to 200 people, class size is typically 12-15.
Some of these brave folks have told me, “I did not want to come. Abuse is on my mind every day. I feel so afraid. But I thought maybe I would learn something to help keep my child safer.” I understand. No one really wants to face the ugly reality of abuse…the fact that someone intends to harm to one’s loved ones. Yet, closing our eyes and hoping it won’t happen is not a power position, and does nothing to protect anyone.
In this brief article, I want to help parents know that any of them can take effective action to reduce the risk and impact of abuse. This is not the same as saying that I can show you how to make sure your child is never abused. We cannot eliminate disasters from happening. But, we can reduce the risk of it happening and enhance the individual’s outcome if it does.
The strategies that I have developed are detailed in a workbook for parents and other caregivers. This provides background information about abuse that I believe is essential for anyone seeking to improve the safety of their children.
There are a few mottos that I depend upon to transmit this information easily. The first is, “knowledge is power.” Thus, I provide information about perpetrators…those individuals who abuse. These can be males or females, old or young. For the great majority of those who experience abuse, the perpetrator is someone who either lives in their home, or is a welcomed visitor in the home, or is another type of care-giver, such as teachers, occupational or speech therapists. Statistics tell us that around 90% of the time, the perpetrator is someone the victim knows well, and often, the parents know well. The myth of a stranger jumping out from behind a bush is just that…a myth. That myth is much more psychologically comfortable for many, who just cannot believe that the abuser is, about 90% of the time, well-known to the victim and the family. It is important for parents to be aware of this fact, so that they can be helpful and believe their eyes and ears when abuse appears to have occurred. In the absence of recent research on the incidence and prevalence of abuse, the Disability and Abuse Project decided to conduct one. We received 7,289 responses nationally. Our 2012 National Survey on Abuse and Disability “The First Report” is focused on the responses of over 2,500 individuals with disabilities and their family members. The full report is available on our website for free download. Visit http://disabilityandabuse.org to get your copy.
Of course, hopefully one can act before abuse happens, yet in most cases, that is not what happens. I want the parents/caregivers to be able to respond effectively and quickly when abuse is discovered or disclosed.
I like to think of abuse as just another in a long list of things we wish would not happen. For example, natural disasters. We wish there would not be a tornado or earthquake, but still we make preparations in case this should occur. We do not close ourselves off to the possibility, but take recommended precautions that will help during and after the unwanted weather event. The motto in this regard is, “hope is not a strategy.”
My recommendation and practice is to have strategies for each phase of the abuse experience. Before, during and after. In the book, I provide examples of how to create an Individual Response Plan, an IRP. The IRP has two main sections for being informed and empowered.
One is for the individual with a disability (whether a child or an adult) and one is for the parent or caregiver. Both have much to learn about reducing the risk of abuse, creating a communication system so that the child with a disability can alert the parent or plan partner after abuse has occurred, as well as let the parent know they do not feel safe or good around certain people or in certain locations. The child with a disability must be taught what to do during an abuse and some strategies for evading abuse as well. Both should become knowledgeable about steps that should be taken immediately following an abuse experience, for the best possible outcome for the victim and the family members.
Using the before, during and after format, and practicing the IRP skills monthly, individuals and families (and other caregiving situations such as foster care, group home living, independent living) can enhance their safety. And, if abuse does occur, can enhance their well-being even though it happened. It is most likely not possible to eliminate abuse as a danger of life, but with planning and creating strategies for increased safety, the reduction of risk is a worthy goal.
It must be said that most parents are not warned by their physician, case manager, school personnel, that abuse is more likely for children with disabilities than for those who do not have disabilities. I do not know why this is, but to counter this reality, I have developed a one page guide for parents, so that they are prepared. This Parents’ Guide is called “Ten Tips for Parents” and is available on our website for free in English and Spanish (http://disabilityandabuse.org/resources/index.htm). I believe that being aware and prepared is far better than remaining blissfully unaware and unprepared.
Parents and agencies who have adopted the practices and strategies detailed in “A Risk Reduction Workbook for Parents and Service Providers to Individuals with Intellectual and Developmental Disabilities” have stated that they feel very much more prepared. The initial instruction, to treat abuse similarly to other unwanted but likely events as discussed above, makes it easier to accept the idea of making a plan, and discussing the unwanted event with their loved one. By visiting the website of the Disability and Abuse Project at http://disabilityandabuse.org/books/index.htm, you can see the comments of our reviewers who contributed to the book by making their own assessments and recommendations.
The essence is that abuse is a serious problem for those with autism. Abuse cannot be prevented but the risk of it happening to your loved ones can be reduced. And, through careful planning and practice, if abuse does occur, all parties know what to do. This includes having access to therapy for both victim and parent or siblings. By planning ahead, victims more easily become survivors, and by working together families can heal more quickly. Remember, knowledge is power.
- Recognition of a Pattern, Call for a Response: A “Rule Out Abuse Campaign” for Physicians
- A Guide on Responding to Suspected Abuse of People with Developmental Disabilities