Written on April 3, 2013 at 4:17 pm , by Family Circle
By Kassiane Sibley, an editor at the Thinking Person’s Guide to Autism.
As more kids are identified as being on the autism spectrum, it is becoming clear there is a missing and critical skill that needs teaching: self-advocacy. That’s where I come in. I am an autistic adult who teaches autistic youth how to make their needs known and get them met.
Most of the kids I work with are still pretty young and are at a stage where they work through the process with a mentor. Together we identify what they want or need, who can make that happen and what we need to do. Then we meet after an advocacy session to evaluate how it went. The process is highly adaptable to the needs and abilities of the child.
For example, “C” was 10 years old and pre-verbal. He had a lot of frustration and would lash out and have meltdowns. To find one issue to focus on, I looked at his behavior assessments and it seemed as if the big problem was that he was being made to do things without having a choice. “C” didn’t have the word “No.” Adults would tell him to do things, he’d resist, they’d force him and then he’d lash out. So using sign language, AAC (Augmentative and Alternative Communication such as picture boards) and words, I taught C the word “no.” I also put forth the edict that absolutely every adult around him had to respect that “No” when he used it. That’s key. Lashing out worked. I had to make sure “No” worked better. It is an assertion of his needs and his bodily autonomy.
Teaching C “No” didn’t look like most mentoring meetings. We did a significant amount of hanging out and stimming (self-stimulatory behavior like rocking back and forth). We had “Yes” and “No” PECS (Picture Exchange Communication System) available. I’d steal his blocks and then if he got frustrated I’d emphasize “No” and back off. He’d get in my space and I’d say “No” and sign “No” and hand him the PECS card. If I asked him to do something and he was indicating not wanting to do it, I’d make a really big deal out of all the ways to say “No.” And when it clicked it was obvious, unambiguous and to be respected. “No” is a really important tool. It’s advocacy and it needs to work.
A very different 10-year-old I work with, “B,” is extremely verbal and also has a lot of frustration. Our sessions look more traditional. “B” tells me something that’s causing him problems – usually there are a number of things – and we try to see if there’s anything all those issues could have in common. For example, he gets frustrated when he’s feeling interrogated, when something takes him by surprise or when he doesn’t know what is going on. He’s really fluent with language, so the things that fall out of his mouth sound coherent but they aren’t actually thought through, which people misunderstand a lot. Once he gets to that point, conversation needs to stop.
Much like with “C,” this was a “We’re going to teach a single phrase” thing. We worked on “I cannot have this conversation right now.” It’s a reasonable middle ground: it may not be what adults want to hear, but it’s not disrespectful. It’s “B” setting a boundary in a way he can – and it’s not unreasonable to expect adults to respect that boundary.
As my students grow in their base skills, such as boundary setting as demonstrated above, we do work on individual events as well. My goal is to give them a library of advocacy skills that they can eventually pull from in most situations. That way, when they need to advocate for themselves, they know at least where to start. With some general self-advocacy skills and practice with specific situations, the autistic kids I mentor are way more ready for the world than I was. I’m just not sure the world will be ready for them.
Has a mentor changed your child’s life? Post a comment and let us know.
Kassiane Sibley also blogs at Radical Neurodivergence Speaking.
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