“I Cannot Have This Conversation Right Now.”

Written on April 3, 2013 at 4:17 pm , by

 

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.

17 Responses to ““I Cannot Have This Conversation Right Now.””

  1. I love this article. Are there books to read that could help me guide my child to self advocacy? And would this work for a 5 year old? I have to admit that sometimes I feel like I am missing what my child is trying to tell me by making my own interruptions when he verbally explains his needs. He is verbal but has trouble finding the words he needs to explain things to me.

  2. There’s “Ask And Tell” edited by Stephen Shore, which has the lengthier description of how we go through this process-it’s been tweaked a bit in the past 10 years, but it’s still good, & everything needs to be modified a bit for every student anyway.

    And a few years after that, Valerie Paradiz wrote a self advocacy workbook that’s also quite good, and it’s interactive.

    IMHO it is *never* too early to start teaching self advocacy skills. Non Autistic children get “NO” at about 2, right? And that’s early boundary setting (which I emphasize more than I did in A&T). Little kids can definitely learn self advocacy.

  3. I love this! The importance boundary setting cannot be overstated–for any child. Or adult.

  4. I love this! We’re trying to teach our son right now to recognize when he’s getting overwhelmed and to say aloud, “I need a break.” He is normally a very good kid who respects others and respects rules, but this year he’s begun acting out in school and when asked why, he says, “I needed a time-out.” At least he recognizes it for what it is and not as a punishment. I see that as a step in the right direction.

  5. I love this! It is fantastic that you are mentoring others – every child should have that – really needs that. And it has been so important for my to know that he is being heard and understand – that I am there to guide him, to help him identify his feelings and opinions and express them, and I am not there (nor is any adult) to exert control over him. Thank you so much for your work.

  6. This is fabulous! Thank you!!! I will be sharing widely!

  7. The tag at the end of the post asks us to comment on a mentor who changed our lives, but wow Kassiane, I wish you were around when I was little. Yes, lashing out did work, but I would have much preferred it if people understood me and paid attention to my clear signs of overwhelm. For me, it was very isolating to have to lash out or run away just to protect myself.

    Then, to be labeled as a problem child just added to my overwhelm. It’s a scary spiral to be trapped in, and I love it that you’re stepping in with your hard-won expertise and helping children be heard, and valued, and protected. That’s some powerful mentoring, huzzah!

  8. instructor, which seeks to provide tools for autistic children to protect themselves. Closes with bitterness, and I am convinced that it is due to the fact that the tools that are unbalanced suggests. seeking a “compromise” (as he calls it) that is not really a compromise. Some children (just a few) can bend fully to the needs of the culture unbalanced. But the culture is unbalanced if you favors.

  9. the item is NOT “learning to say no,” is to understand how to do it because “no” is heard
      which is a completely different thing
      = Society must learn to listen to “no”. Even if you do NOT adhere to the cultural criteria of the majority. That’s why every strategy fails.
      because it lacks this part

  10. Words…have…power…

    That’s pretty important to a language impaired kiddo. Many “behavioral” problems are due to inability to empathize with autistic.

    I wonder how much “behavior” is PTSD.

  11. I enjoy all the things you write! I wish I could find an autistic adult who would mentor my son. Thank you for putting that thought in my head…

  12. I really like this post. You quite clearly convey the need for true respect for these students and their unique needs — along with what is essential for them to have what I always think of as a Helen Keller moment. The realization that they have the power to make their needs known. It’s a profound concept that can change a life if that connection is made and fostered.

  13. Recently, my five year-old son was in the middle of a meltdown. All of a sudden he stopped screaming and crying and said, “I need a loud noise!” His grandpa went to the basement, found a duck call, and just like that, my son was where he needed to be again. I’m so incredibly proud of him. I think most five year-olds are not so in tune with their needs, and I’m so grateful that he was able to not only recognize it, but articulate it.

  14. @Chris: That’s fantastic. If only all kids were in tune…and rewarded for being so with what they need. So often adults tell kids that what they need isn’t, for whatever reason.

    @Karen: if you have a local ASAN chapter, they might have adults with the skillset. Any local college or university will have a disability services department & they might be able to hook you up too.

    I’m so glad that this article has reached so many people. It’s an idea whose time has come. & it’s reaching people who agree & that makes me flappyhappy.

  15. While DH would just say “stop licking your hand”, I asked DS why he did. DS said “to get the marker off”. While DH would say you don’t need your winter jacket when it’s 60 degrees outside, I asked DS why he wanted to wear it. DS said “the sleeves work better”. It’s nice to be getting answers from DS that we can use to help him out (buy a spring jacket with easier sleeves). My next goal is to get him to provide his reasoning from the beginning (or to get me to ask from the beginning), instead of waiting until we’ve all reached the frustration point to tell/ask. Thanks for this article, it is great!

  16. @Chris – I’m proud of your grandpa that he is so in tune, and accepting of, who your son is that he immediately went into action!

  17. [...] neurodiversity movement, to other autistic people, talking, writing about their rights. Read this brilliant article about the right to say ‘No’ for people with autism by Kassiane Sibley one of the editors of Thinking Person’s Guide to Autism Share this:TwitterFacebookGoogleLike [...]