Advocacy: Is it Worth the Effort?

Being our son’s advocate isn’t something that we bargained for when we became parents. At least, not to this extent. Meeting his needs is so much more complicated than I ever envisioned. Not only is it difficult and exhausting, but it raises so many doubts! Are we doing enough? Are we doing the right things? As parents, does our advocacy make a difference, or should we just leave advocacy to the professionals?

I recently had one of those soul-searching moments when our son CJ’s case manager called us. We had been advocating for an employment support service for over a year. The provider denied his application, saying they needed more justification. Every fiber of my being wanted to scream, are you kidding me? If it weren’t for electronic documentation, the amount of supporting paperwork we’d already submitted would have decimated a forest. It’s easy to feel as if nothing we do matters.

If I’ve just given voice to your thoughts, I have some good news. A 2022 study of 185 parental advocates found their efforts made a tangible difference.1 Teens with parents who advocated on their behalf received more services after high school graduation, than teens whose parents did not. This held true even when taking demographic factors and autism spectrum differences into account.

The parents were asked via structured interviews and online surveys to look at a list of 16 sample forms of advocacy and identify which ones they use. What caught my eye was the wide range of choices provided. The more advanced options included presenting at conferences, lobbying at state and federal levels, creating media awareness, and volunteering for organizations. I read those and felt a combination of awe, tiredness, and inadequacy.

However, to my relief, the study also listed more familiar activities that I wouldn’t normally think of as “advocacy.” These included searching the internet for services, talking to other parents, reaching out to service agencies and providers, attending training sessions, and asking questions.

Although this study did not examine the impact of individual advocacy types, it was clear that parental advocacy efforts increased the number of services received. In fact, the researchers suggested that providing greater access to advocacy training might be a good avenue to consider for improving student outcomes.

So, where does this leave me? I may not have the time, finances, or expertise to present at national autism meetings or to testify before Congress, but advocacy doesn’t need to be that complex. It can be asking other parents what worked for their children. It can be simply talking to a teacher or a transition program coordinator about available services, such as occupational therapy, physical therapy, or music therapy. It can be checking your health insurance for benefits not covered by the schools.

Sometimes, just asking questions can plant seeds. For instance, if you ask about the availability of social skills groups during a parent-teacher meeting, odds are the social worker will remember you the next time a group has an opening. That actually happened to us 16 years ago and CJ is still working with that same social worker. You never know what opportunities a casual conversation will lead to later.

My message for you is simple: don’t give up! Remember the extra paperwork we were asked to provide? After I indulged in some grumbling, I regrouped and worked with the care manager to figure out what was needed to make the service happen. We had advocated too long and too hard to just give up. In the end, CJ was approved for the service, although unsurprisingly, there are now additional steps we need to take.

Parental advocacy may seem onerous, but as parents we can make a difference even when it may not seem like it. When you feel discouraged and at a standstill, remember, you might actually be sowing seeds. Eventually when the time is right, those seeds will bloom at their own pace, not yours.

1 Lee CE, Burke MM, DaWalt LS, Li C, Taylor JL. The role of parental advocacy in addressing service disparities for transition-aged youth on the autism spectrum. Autism. 2022;26(4):1001-1006. doi:10.1177/13623613211057660

Bio:

Elizabeth Irish, M.L.S., A.H.I.P., is a health sciences librarian specializing in education and consumer health information. A longtime member of the Medical Library Association (MLA), she is a distinguished member of MLA’s Academy of Health Information Professionals, holds MLA’s Level 2 Consumer Health Information Specialization certificate, and is the Consumer and Patient Health Services Caucus Chair. She is a frequent contributor to Autism Digest. She may be contacted at irishelizabeth@gmail.com .