What is self-advocacy, anyway? It’s a complex collection of behaviors including speaking up for yourself and your rights, asking for what you need, negotiating, compromising, using available resources to get your needs met, and, perhaps most importantly, being able to explain your disability to others, either verbally or using visual tools such as a written or pictorial card. As parents, it’s natural for us to advocate for our children. As infants and young children they were unable to advocate for themselves and it was all up to us. Now, though, we want to retire from this job. But are our children ready to take on advocating for themselves? If not, when should we start passing the advocacy baton?
When it comes to self-advocacy, it’s never too soon to start working toward independence. Julia writes that she’s teaching her students self-advocacy and problem-solving in elementary school. We can allow toddlers and preschoolers to make choices about what they will wear or eat, within acceptable guidelines. But chances are your children are already teens or young adults. You may only now be realizing that they did not develop self-advocacy skills naturally as they matured, the way many of their neuro-typical peers did. So, how do we start now?
The answer is as individual as your child; start where she or he is right now.
Is your son nonverbal? Make sure you have the right augmentative communication device for him. If it has the option to program in phrases, questions or answers, make sure the device is programmed to say the specific phrases your child most wants to communicate. Also, listen to the voice on the device; whose voice is it Your son probably does not want to sound like his mother or speech therapist. You might want to ask the drama teacher at your local high school to hold auditions, and let your son choose the voice he wants to speak for him.
Is your daughter high functioning in some ways, but immature when it comes to making decisions or solving problems? Provide needed guidance while respecting her intelligence and individual preferences.
Does your son seem to be permanently attached to his computer, or your daughter to her smart phone? Are they uncomfortable with verbal conversations or face-to-face interactions? You may find it’s easier to communicate about the transition process via email or text rather than face to face.
Wherever your child is, that’s the place to start. The Autism Speaks Transition Tool Kit says, “The transition process will take time. It is important that you work with your adolescent to provide the communication, self-help and self-advocacy skills that he or she needs in order to be an active participant in the process.”
(Next post: Self-Advocacy 3 – Introducing Self-Advocacy)