In my six years as Autism Resource Specialist in the Center for Children with Special Needs at Floating Hospital for Children in Tufts Medical Center in Boston, I have met with hundreds of families in the moments after their young child receives an autism spectrum disorder (ASD) diagnosis. Although each family is unique, my goal for every one of them is the same — to provide them with the support, encouragement, and information to empower them to get the services their child needs as quickly as possible.
There will always be parents who are able to take the recommendations from the diagnosing clinician and swiftly do what must is necessary to help their child. But there are far more parents who are challenged by their emotional reaction, confused by all the information, overwhelmed by everything else going on in their lives, and/or can’t overcome the bureaucracy. Consequently, they remain stuck while their child does not get services.
Empowering these families is the key to ensuring that they are able to follow clinician’s recommendations without delay. Empowerment at this early stage is also critical because it builds a strong foundation for the advocacy that all families will have to engage in throughout their child’s youth for his or her educational, medical, and community needs.
The definition of “empower” I like best is: “To give an ability to.” Through my work, I am giving parents the ability to help their children, an essential skill for the journey on which they are embarking. We could provide a case manager to each family who would be responsible for finding service providers, setting up meetings with the school, filling out applications, and acting as the child’s advocate . But what does that teach the families? That they can’t do it themselves. And for most families, that is not true.
If families have a clear road map with a knowledgeable and compassionate person to reach out to when they get lost or hit a dead end, they will find their way. Some families, however, have barriers they can’t overcome on their own and will require a guide to ensure that their child gets necessary services quickly. In those circumstances, we do assign a social worker because our goal is for every child to have early access to the intervention he or she needs.
Steps to Empowerment
So how do I empower families to access intervention quickly?
The first step is meet them without expectations. I never presume to know what a family is thinking or feeling or might need before I speak with them. I review the chart, talk to the clinician, and often watch the feedback session, but until I am with the parents, I do not know how I can best support them.
There is misconception that if parents are expecting the diagnosis, they are better able to handle it. I have sat with countless parents who are certain their child had autism even before the evaluation or who have come for a second opinion after already getting a diagnosis, and their reaction can be even more powerful than those who are not expecting it. On the other hand, many families are relieved and even happy to get the diagnosis because they finally know what is wrong and now have the key to unlock the door to services.
Whatever the parents’ state of mind, I validate their reaction, help them process their feelings, and determine whether they are ready to move on to the next steps in the empowerment process. For some families our meeting focuses solely on the emotions they are experiencing, but even if that is the case, ALL families are given at least one action item when they leave to get them on the path to getting intervention for their child.
Another misconception is that if a family is highly educated, they are better able to get services for their children or conversely, if they have a limited educational background, they will require more assistance. I have found that the determining factor in how quickly parents are able to access intervention for their children is whether they are given the information they need in way that works for them.
Thus, the next step in the empowerment process is to listen. I’m not there to tell parents what I know or to give them a cookie-cutter list of resources. My role is to individualize information to their specific situation, so I start every meeting with families by asking, “Do you have any questions about what your child’s doctor just told you?” I gain so much knowledge about their understanding of the diagnosis and what they are supposed to do next by their response, even if they reply, “I don’t have any questions.” This can often mean they are so overwhelmed that they don’t even know what to ask, so a few simple questions can help me figure that out.
I also ask them if they have services in place, and what they think about the agencies/people providing those services. If they are already connected with an Early Intervention agency but feel that their concerns are not understood, I can coach them in ways to ensure their voice is heard. If they are thrilled with their child’s teacher but not the IEP Team leader, I will discuss approaches or resources that can make a difference in the future. If they are not connected to any services, I know I have to start with the basics.
In addition, I ask about the support they have in their lives. Many parents are dealing with the challenges and worry of having a child who is not developing as expected and who might have difficult behaviors, while at the same time coping with a spouse or extended family members who don’t understand, friends and a community who are judgmental or non-welcoming, and sometimes even a pediatrician who is dismissive of their concerns. Other parents are completely alone, new to this country or this area, or just don’t have anyone they can lean on. Learning about their support system enables me to further tailor my resources to meet their needs.
Explaining the doctor’s recommendations is the next step. Clinicians have limited time with families and have to focus on evaluation results and the diagnostic formulation, and can usually provide just an overview of their recommendations. However, knowledge is power. If parents have a comprehensive understanding of the services recommended for their child, how the services will work, how to get the services, and the importance of acting immediately and being assertive, they are much more likely to pursue them. Telling a family that their child will be going from a few hours a week of therapy to 15 or 20 hours seems impossible and can even be off-putting, but once they understand how the service will actually work, why they need to move quickly, and where to go for the services, I see a fire light in their eyes. “I can do this!”
The final step is providing the resources. A recent study (Mulligan, et al., 2010) analyzing a resource given to parents of children after their child received an autism diagnosis found that what families want is “concrete guidance regarding existing services; and specifically which services should be sought, in what order, and in how to navigate the various tiers of service.”
With that in mind, the most important resource I provide to parents is a simple To Do list, prioritized by importance. Each step includes the name of the program/service/person that provides the services the child needs, the phone number, the website, what they are supposed to say when they call or email, and what to do if nobody gets back to them. I often put the steps into sections such as “Do Tomorrow,” “Do Next Week,” and “Do Next Month” so they don’t feel inundated and will recognize that not everything must be completed immediately. I make a copy of the list and assure them that when we talk again, we will go through the list to make sure everything gets done.
In addition, I give each family a copy of the American Academy of Pediatrics booklet “Understanding Autism Spectrum Disorders,” along with the Autism Consortium’s Parent Information Packet (PIP). The PIP is downloadable (see Resources at the end of this article), available in five languages (English, Spanish, Vietnamese, Chinese, and Haitian-Creole), and provides easy-to understand answers to parents’ most-often-asked questions about autism.
I also go through the PIP with the parents and mark sections that align with their needs and questions so they know exactly where to look and don’t get distracted by information they don’t need to know now. Finally, I provide them with the link to the Autism Consortium’s extensive database so if they have access to a computer, they can look up resources themselves instead of calling me, further empowering them.
We all know the importance of getting intervention for children after an autism diagnosis as quickly as possible. By following the above steps and using appropriate and individualized resources, you can help make that happen for the children in your clinic as well.
Bernadette Murphy Bentley, MPA, is the Autism Resource Specialist at Tufts Medical Center, the Editorial Director of the Autism Consortium’s monthly E-News, and the mother of an adolescent with ASD. Sign up for E-News by going to http://www.autismconsortium.org/home/newletter-archive/.
Autism Consortium Resource Database. Available at www.autismconsortium.org/resources-and-events/database/
- Mulligan, L. Steel, R. MacColloch, and D. Nicholas, “Evaluation of an Information Resource for Parents of Children with Autism Spectrum Disorder,” The National Autistic Society. Vol. 14(2) 113–126; 342570 1362-3613(2010).
Parent Information Packet. Autism Consortium. Available in five languages at www.autismconsortium.org/take-action/become-a-family-partner/
“Understanding Autism Spectrum Disorders.” American Academy of Pediatrics. Available at www.nfaap.org/netforum/eweb/dynamicpage.aspx?site=nf.aap.org&webcode=aapbks_productdetail&key=95fb20ef-f21d-4541-b413-1a83ec362e6d