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When a child experiences trauma (abuse, neglect, extreme and destabilizing life event), their narrative about the world is altered – sometimes so significantly that it is never set right again. At the most base level, it’s TRUST that is altered. The belief that the world, and those in it, can be kind, safe, and compassionate. That I can be understood, be vulnerable creatively/emotionally/physically. So often this core sense of trust in the world is replaced by suspicion, fear, and the need to protect. This becomes the post-trauma narrative and what suffers is relationship/friendship, the ability to accept mentorship and guidance, the trust that what one is telling me is genuine and for my best interest, the ability to let go/be vulnerable and try new, unpracticed, and unpredictable things. What’s lost is the ability to bounce back from hardship and conflict and tension – normal aspects of life that come with the territory of building new relationships and taking on new and difficult challenges (like going to school, starting a new job, entering into a relationship, living with another person, etc).
As caregivers, practitioners and institutions of learning, we are helping to rewrite the child’s life narrative. We’re helping the child to trust once more in the world and in their ability to be vulnerable in the world, which ultimately is what leads to growth and discovery. We’re doing this slowly, deliberately, and at the child’s pace (following their lead/interests, taking steps back when the narrative moves too close to past events that were too much to bare, and then recalculating with the child and continuing to push forward a narrative built on trust, reliability, safety, and a willingness to be vulnerable).

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Worries about an upcoming Costco run. This client and his mother started by breaking down the steps of this event. Then we made a worry rating scale to the right. Then we further broke down the biggest worry step (3 in this case). Then we came up with some idea of what to do during that step.

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The following interview is part of an ongoing conversation I’ve been having with a young adult with Aspergers. His insights have been incredibly educational for me. I hope they are for you as well. There will be more to come.

Spec: Why is it so hard to be spontaneous or go off schedule?

T: Because every time you go off schedule or change something, you’re kind of changing the game plan. Someone with Aspergers or Autism thinks through everything, they don’t really feel it. So they have like a movie or scenario running in their head of what to expect and that’s just part of the way…I cope with sensory sensitivities…you know what to expect…you develop a pattern of sounds over time…But when you change something, you’re going from the 5 scenes you expected in the movie or the scenario and you’re like cutting out the middle one and throwing something different in. That completely breaks the pattern of what you were expecting for that day. So it’s basically you ended up doing two whole new movies. But you put one of the movies splat in the middle of the centerpiece of your day. So everything is now different. And you don’t know what to expect. And everything you were expecting, you were processing and coping with things, now changes because it doesn’t make any sense. It’s confusing…you end up with kind of sensory overload…you don’t know what to process…what people are doing is different…the times they’re doing it are different… it’s just different.

Spec: So even if someone were to step into that movie midday and give you a plan for how the next half of the day/movie would go…would that help?

T: Yeah…but its also about timing. It’s hard but people tend to react rather quickly to change and stuff and all those fast moving parts…that urge, that rush to change with the schedule, is often very hard for people with Asperger’s and Autism, because you don’t know what to expect and then everything is moving so quickly around you, people are rushing trying to get places, change with the schedule, adapt, figure out where you are, ‘how does the rest of the day fit in if I have to do this thing in the middle’, and it’s very hard because when you’re entire view of the day is shattered…and everything’s moving fast, you can’t get a grip on what is going on now. It’s kind of like you experience the day in your head, but all the sensory stuff, all the things you see, its just data input, you put it all like a movie in your head, then it changes. Things aren’t going slow enough for you to adapt. To figure out in all seriousness, what is reality right now. Because it changes and your brain works on patterns and details, everything you’ve done so far that day, now makes no sense.

Spec: It sounds like part of what your saying is that it’s not that someone with Asperger’s can’t change that movie in mid reel, but more that it’s so rushed, and the rush is the part that’s so hard to deal with?

T: When you see stuff in so much detail there’s not a lot of time…When everyone’s rushing to get there and worrying about details later…so even if you can change the movie reel…ok…but you have no idea what genre, who the actors are, you have none of the details. You know the setting, like a restaurant for example, but your brain isn’t working. It just processes “a place you eat”. There’s not enough detail.

Spec: So without detail you’re left with a big question mark?

T: You’re left wandering around in an environment you completely do not understand…you experience but it makes absolutely no sense.

Spec: Why not just go with the flow (sarcastic tone)?

T: Because your brain doesn’t work that way. It’s details. Take in information from the environment…to function. Other people have a very natural, unconscious recognition. They can just do it. For people with Aspergers and Autism, it’s very intellectual and a conscious process.

Recently I recorded an interview with a young adult with Aspergers. We’ll call him T.

T shared candidly about the struggles to feel included, the overwhelming benefits of a phenomenal long-term memory, the importance of “doing it your way”, the difficulties of a hypersensitive sensory system, the reliance on logical thinking, and the challenges that come  along with feeling emotionally out of touch.

When we began speaking about T’s experience with Aspergers, he shared that he really wanted to make things easier for younger school-age kids. That maybe his experience could give others a voice, another perspective, some hope, and some truths that might help them get through a very difficult time.

I would be happy to provide the audio recording of this interview to those interested. Just comment requesting the audio or email me (spectrumshareconsulting@gmail.com).

T ALSO MADE A GENREOUS OFFER. He volunteered to answer questions (to the best of his ability) from kids and parents about living with Aspergers. If you would like to send me questions via email (spectrumshareconsulting@gmail.com) I would be happy to pass them along and then post T’S responses on this blog. 

Please take advantage of T’s offer. He is incredibly insightful, humble, and has experienced the roller coaster that many kids and families are currently on.

Just to have someone to talk to, to talk at, to talk through a thought that’s holding you up, is so beneficial to my mental well being. I experience the benefits of this through conversations with my wife, my family, and a couple of close friends. It’s rare that these conversations end in some complete feeling of freedom from worry or some total resolution. In fact, conversations that go in that direction lead me feeling invalidated and misunderstood. More often, the issue is left sitting on the table, but unlike before, it’s no longer mine alone. In my case, I’m okay with the issue laying there because I feel better.

Externalizing

 

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Context: this occurred over a 50 minute session with a brilliant and creative 12 year old girl with ASD. We’ll call her Sue. It began as a conversation about fashion. The topic was “fashion snobs”. As is always the case, Sue has a drawing app open in front of her so that she can draw and talk. She begins to draw this “snob”, who is described a lot like a recurring character in a Nickolodian sitcom (the stereotypical high school “mean girl”). While embellishing her topic of interest, I mention how curious I’d be to see “the nice girl”. I say that I’m going to start to draw her as Sue continues drawing the “mean girl”. I ask sue for help along the way – just small details that describe this “nice girl”.

The above image is what we came up with. Interestingly, this is very representative of the girl Sue wants to be and often is when she’s on her game. The picture represents unique ideas about right and wrong, social expectations, personality eccentricities, wishes, interests/passions, insecurities, etc.

Through simply trusting the process of engaging an individual in her interests and being curious (DIR-Floortime), we are able to create a character that starts a conversation about who Sue is, what’s she’s aware of regarding herself, and the person she’d like to be more often. This is not only a fascinating process but also a therapeutic one. Sue tells her story to someone who can help her record and reflect on the way she experiences the world. She talks about her insecurities without feeling exposed. She creates a narrative role model. Lastly, she gets to see how close she already is to her ideal self.