Wednesday, January 26, 2011

Awakening Self-Advocacy

Maybe you’ve seen it. In front of a cool, metal desk sits an awkward man in a suit. The questions keep coming, but as soon as his mouth opens…his mother answers them. Once the interview is over, the man slumps out of the office, his mother trailing behind, telling the interviewer “what a good boy” her son is, and how he needs the job.

On a Monday night, during Prime Time, it makes for good comedy. But in the real world, we all know this would never fly. So, when it comes to our kids, sooner than later, we need to realize we must start stepping back and let our kids speak for themselves.

But how? When?


The answers to those questions will vary, as every one of us is unique, just as how Asperger’s and Autism Spectrum Disorders differ from person to person. However, at the end of the day, the reality of our high functioning kids flying solo needs to be realized. Sure, we can do for them, fight for them, and continue to advocate for them in such a manner they will never shoulder the burden themselves, but is that really a good idea? Are we really doing them a favor if we continue to do all that “work” (for lack of a better word) for them?

Our goal for Kristina has always been for her to be able to function successfully on her own “out there”. To go to college, and to have a place to call her own, as well as a career to support herself. And we believe she will get there.

Now that she is in high school, she has the opportunity to start having a proactive say in her relationship with her school. For so many years, her parents (and teachers) have been the ones to make sure meetings are scheduled, plans adhered to, communication with the school is open and ongoing, and so on. But now, it’s time to start passing that torch over to K.

So, how are we doing that? We’re giving her little pieces at a time, and looking to her Guidance Counselor for advice and direction, too. Little things such as having her contact her counselor for “Walk the Schedule” times and doing it without us present are a start. Encouraging our daughter to introduce herself (and how Asperger’s presents itself in her) to her teachers is another. Stepping back and us following her lead is just one way we can allow her to trust her own instincts and, in return, see that we respect her, too.

Yes, we will still meet her teachers, we will stay involved, but she is getting older. It is important she become an active, vital, verbal part of this process. It is imperative she learns to self-advocate. If she’s going to fly, it’s time for her to do more than peer over the side of the nest. It’s time to awaken the concept of self-advocacy, and give it wings.

See, we don’t want her to fly.

We want her to soar.

And soar, we are certain she will.


  1. My 16 yo is undiagnosed (as yet) but Aspergers has been suggested to us by so many professionals (that all want us to see someone else for diagnosis) that it's not funny. We do have multiple learning problems diagnosed however.

    She once tried to explain some of the difficulties she was having to her english teacher and was told to stop making excuses. I hope your daughter's teachers are more understanding :)

  2. I anticipate that this will be one of the hardest parts of parenting for me. Especially with my son who is on the spectrum. It's just so hard to let go, even when your kids are neuro typical, but when they are on the spectrum it just adds this other layer of worry and concern. I love this post, though, because like you, I want my son to soar. And I know he can! I think it's me I'm more worried about....

  3. @Beet - As for teachers, we take school one class at a time. Since she does have a DX, we do meet with her teaching team at the beginning of each year/semester, and that seems to help. A lot of times, I find I really need to work on my own communication skills so I can define Asperger's in light of K. That seems to help a little. Still, it really is disheartening when you run across people in your child's life (school or otherwise) who just don't want to "hear"...

  4. @Patty - I think you said it so well. I think that's what sort of hit me this year. She IS growing up, and I've got to choose to step back and let her keep moving forward. And after so many years of everything that goes with ASD's (seemingly constant advocacy, therapies, etc., where we are always there, always "on call"), it is hard to step back, isn't it?