How to be an Effective Advocate for a Child with ASD

By Sarah M. Dunkel-Jackson, Associate Clinical Director, Autism Services, Kinark Child and Family Services
and the School Support Program

Becoming a parental advocate for your child with Autism Spectrum Disorder (ASD) starts early in your child’s life and is crucial to identifying the right services to maximize your child’s potential[1].  Being an effective parent advocate empowers you to build collaborative relationships, communicate effectively, and get what is needed for your child.  Ineffective advocates may use poor coping skills (e.g., venting, denial),[2] which can create resentment or a bad rep instead of what is wanted for your child.

To become an effective parent advocate requires you to excel at combining three key advocacy components:

  • Assertive advocacy
  • Informed advocacy
  • Collaborative advocacy

Assertive parent advocates stand up for their and their child’s rights by expressing their beliefs, values, and views in an effective manner without stepping on the rights of others, to get what is in the best interest of their child.  Assertive advocates are effective in meetings, on the phone, and in written communication with service providers, schools, medical professionals, social media, and… in life[3].  As an assertive advocate for your child, you should always speak clearly and concisely about what you want.  Ask questions to make sure you have the right information. Limit your eye rolling and monitor your body language to make sure your body and voice are saying the same thing.  Keeping emotions in check can be difficult, especially when your child is involved, but instead of feeling helpless (passive) or heated (aggressive), learning to be assertive is the way to go.

Advocacy for a child with ASD requires parents to have a very specific skill set[4] which includes educating yourself about terminology (e.g., ASD, ABA, IBI, IEP, OAP, PPM-140… whoa!), navigating the internet and not falling for fads, reviewing literature and evidence[5] and keeping organized records and appointments.  It may seem like a lot, but there are several resources to help keep families informed about ASD (see Resources below).

Successful collaborative parent advocates are part of a team that works toward a shared goal that is, once again, in the best interest of their child.  Building relationships and maintaining a strong network of professionals and friends are key advocacy skills.  Through collaborative problem-solving and effective conflict resolution, parents and providers can co-develop a plan that will benefit the child.

While parent participation and advocacy have incredibly positive effects on children, there are certainly barriers to becoming the most effective advocate[6].  Some barriers include both parents having to work, cultural orientations, having limited or no transportation, having to travel a long distance to services, limited education, and not believing you can achieve your desired outcomes for your child.

But don’t fret – there is hope!  All of the advocacy components described above are skills to be learned… skills to be taught!  For more information about participating in the Central East Autism Program’s Parent Advocacy Project and parent education series through Kinark Child and Family Services, please contact 1-800-283-3377. Parents may also wish to check out the following resources:

 

 

[1] Wright & Taylor, 2014

[2] Ewles, Cliffors, & Minnes, 2014

[3] Wright & Taylor, 2014

[4] Foster, Rude, & Grannen, 2015

[5] Green & Perry, 2016

[6] Njeru, 2015; Wright & Taylo