The majority of individuals with autism are male, and females with autism are often overlooked in discussions of needs and program planning. Special challenges exist in serving individuals with autism who are female. In addition, females may be vulnerable in ways that are often not acknowledged or publicly discussed. We will review the special challenges associated with accommodating family requests for female-only staff, protecting individuals served from abuse, and ensuring that curricular resources are developed to achieve increased independence and self-protection.
Many homes serving those with developmental disabilities are co-ed. Due to the nature of the challenging behaviors that are experienced by the individuals served, there are often more male staff than female staff working in the home. It is generally an expectation that any staff member, regardless of gender, could be expected to work with any client male or female.
Male staff is expected to shower and dress and take care of all toileting needs (including menses) for female clients. There often are complaints from the male staff that it made them uncomfortable to care for a female client, especially during her menstrual cycle. Similarly, female staff members often experience severe discomfort when performing personal care on male participants.
Families also have concerns in these regards. In our experience, many parents are adamant that their female child could not be toileted, bathed, or be assisted with any hygiene routines by male staff members. Furthermore, many of the male staff were scared and uncomfortable with being asked to assist a female client with hygiene needs. If we grant family wishes, we also send a distrusting message to male staff members. We also may be guilty of a double standard. Do we impose the same restriction on female staff members with male clients? Parents of females expressed many times that they worried about their daughters being victims of sexual abuse if a man were to be providing the care in the bathroom. The male staff members similarly expressed fears about being accused of sexual improprieties if they were required to work with female clients.
We have tried to share with families and staff that sometimes it may not be possible to have a female staff to assist in the bathroom—and during those times we would have to have a male staff assist. Also, we try to explain that we screen all applicants prior to hiring them to work with anyone.
All of the individuals we serve are vulnerable, but because there is a higher rate of reported abuse for females than men, they may be at greater risk. We understand families’ concerns, and we always try to be as respectful as possible without promising something that we cannot always comply with.
Below is a summary of the guidelines we use in this context.
1) We have men work with men and women work with women as much as possible. This eases everyone’s anxiety at least a little. People tend to be more comfortable working with individuals of the same gender, at least when it comes to hygiene needs.
2) We are up front about the fact that if we do not have a female staff working on a particular day, then we may have to assign a male staff for that time period.
3) We educate everyone about our standards for taking care of vulnerable individuals (both men and women), and that we would not tolerate any improprieties.
4) We emphasize the importance of teaching independence with hygiene skills as a top priority, since individuals that are more independent are less at risk to be violated. Also, female clients use sanitary pads as opposed to tampons—even though mainstream society typically prefers tampon usage—because tampon assistance would be an inappropriate and intrusive level of help, even for an individual receiving a high level of care.
5) We emphasize the importance of teaching an individual to be a good advocate for himself or herself. When someone can report a violation, he or she is less likely to be victimized. We teach this skill even to our non-vocal program participants, and we believe it is an essential focus for all learners.
6) We train EVERYONE in our settings to stay alert and to be aware of odd interactions between any client and any care giver. There are some behavioral indicators that an individual (even those that are not able to verbalize) has been victimized in some way–whether it be physical or verbal. It is important to create and foster a culture where staff members are advocates for the clients, so that if something odd is observed, it will be reported immediately.
7) All staff members are Mandated Reporters and are thoroughly trained about these obligations.
8) If a client expresses that he or she prefers female/male staff members, then we try to make every attempt to honor that.
In addition, we try to focus on safety and risk in our curricular programming. However, there are real challenges to this goal. First, it can be difficult to convey an accurate concept of privacy, when the individual served is assisted with personal care many times a day from multiple staff members. It is also difficult to teach stranger danger, because turnover rates in most facilities are pretty high and there is a constant cycle of new staff or over time staff that primarily work in other environments. Often, a client may only have been introduced to a new person briefly before that person is assisting them with toileting/showering/etc. In addition, there are a number of additional factors associated with adolescence that make these challenges even more significant. Young adolescent clients may experience “crushes” or attraction to care givers, may call them “boyfriend/girlfriend,” and do not have the mental capacity to understand why that is not appropriate.
Finally, we teach individuals with disabilities to be compliant with directions, which may inadvertently make it difficult to identify situations in which inappropriate conduct is taking place or in which discomfort is being experienced by the client. It is imperative that we do more to teach these learners when it is ok not to comply with a request.
Learners with autism are a vulnerable population of individuals, and females with autism may be the most vulnerable. It is important to acknowledge this worry in families. It is imperative that staff members be trained in ways that reduce this likelihood and that enhance independence and self-advocacy in females with autism. We have shared some of the policies that have assisted us in meeting the needs of females with autism, respecting the families’ wishes, and preparing staff members for the challenges and sources of discomfort associated with providing personal care. It is important for all of us to share our struggles and our solutions, so that more organizations can thrive and provide clear information to families, and so that more individuals with autism are protected from abusive and inappropriate conduct by staff member, and so that all individuals with autism are provided with safe, humane, and effective treatment.
Sandra A. Rogers, MS, BCBA, is Director of Adult Behavioral Services at Melmark Pennsylvania, and Mary Jane Weiss, PhD, BCBA-D, is Senior Director of Research at Melmark. The mission of Melmark is to serve children, adults and their families affected by a broad range of intellectual disabilities. With service divisions in Berwyn, Pennsylvania, and Andover, Massachusetts, Melmark provides evidence-based educational, vocational, clinical, residential, healthcare and rehabilitative services, personally designed for each individual in a safe environment of warmth, care and respect. For more information, please visit www.melmark.org and www.melmarkne.org.