Exploring the Neurodiversity Spectrum

Asperger's Syndrome (AS) is considered a form of autism. As with other forms of autism, it is characterized by varying degrees of deficits in social interactions and nonverbal communications. People on the autism spectrum process information in ways and have sensory sensitivities that often make it difficult for them to integrate into "neurotypical" society. Certain senses may be over- or underactive, and they may experience difficulties in integrating sensory information. In extreme cases, overstimulation can cause a person to shut down, withdrawing from their surroundings.

SGI Quarterly: Can you describe the school which you started two years ago?

Valerie Paradiž: ASPIE (The School for Autistic Strength Purpose and Independence in Education) is a school specifically geared toward the needs of adolescents with high-functioning autism and Asperger's Syndrome. We started with 8 boys the first year and had 15 the second. These young people tend to be able to do academics at the level of their non-autistic peers, but they need certain kinds of social and emotional support. So at the school we have a very therapeutic approach where we talk openly about autism--about thought processes and auditory sensitivities and overstimulation and that kind of thing. This means that the kids can learn academics while finding out what their particular obstacles to learning might be and how to get past those. In other settings they probably would have just been described as a behavior problem, and people would just give up on the academics.

SGIQ: Elijah, what has ASPIE been like for you?

Elijah Wapner: It taught me a lot. It's probably one of the best experiences of my life.

SGIQ: When you first came to the school, what did you think?

EW: It felt good. I knew that I was going to make a lot of friends.

VP: The students very openly know and speak about one another's hyper- or hyposensitivities. The teachers do many interventions during the day, in the middle of academics, to bring the kids to that awareness. A teacher might say: "So-and-so is starting to get really agitated, and we all know that he has auditory processing problems and sensitivity to sound. And it is getting pretty loud in here, so can everyone bring it down a notch."

That process is ongoing throughout the day, and all the students really respect each other in that way. A student might remind someone not to touch another student because he has tactile sensitivities, and if you touch him, he'll start feeling shut down and not be able to focus on academics.

The original eight students--who call themselves "the founding fathers" of ASPIE--have created a real culture so that when we expanded this year and brought in seven new students, it made the transition for those new students so easy. The new students knew immediately that this is a safe space. They are amazed that we talk about autism openly. For a lot of them, no one even told them what autism was. We have one student who thought for many years that he was dying from a disease. He said that it has changed his life to know, first of all, that it wasn't a disease that he was dying from and, second, to hear what the different components of it are. It explained his body and his thinking process to him in ways that no one had ever taken the time to do.

This is something I need to stress. It's really OK for parents to talk to their kids about this. In fact the sooner you start, the better.

SGIQ: I understand the ASPIE school has a "crash room."

EW: The crash room is the room where the kids at ASPIE go if they can't handle the noise in a room or if they get really angry at someone or something. It helps them chill out.

VP: It helps them learn self-monitoring skills. If you learn how you get overstimulated and how that can trigger "shutdown mode," and if you learn how to remove yourself from certain situations before that happens, you can have a much more productive, fruitful life. The crash room is never, ever, used as a punishment or in a punitive way. It's presented as a choice, and when that choice is made, it is praised and encouraged. Students then use it to begin to learn those self-monitoring skills.

The room has a mattress, and there are different tools in there that you can use. For example, you can listen to music on a CD player with headphones if that helps you. Sometimes what happens if you get overstimulated is that you can't even process other people's speech anymore. So if you go in the crash room, you can get yourself back into an integrated place more quickly than if you are expected to just sit in a classroom and cope.

SGIQ: How does ASPIE relate to the trend toward inclusion?

VP: We have a lot of components that offer kids the ability to move into the mainstream. We're definitely not a bubble, isolated from the rest of the world. Some of the students mainstream in select classes at our partner school district. The real intention is to take what's learned at ASPIE and bring it out to other places and experiences. But it always serves as a home base where you can analyze things and understand what happened to you in different situations.

People on the [autism] spectrum are constantly being told they need to learn social skills. For example, you might be taught to make eye contact, but you're not taught why or that it could even be a choice . . . For instance, that if you make eye contact, then a policeman might be less inclined to find you rather suspicious if he's calling out to you to stop or come and speak to him.

If you spend all your time trying to make neurotypicals [non-autistics] satisfied, that causes depression. It's almost like working against yourself, your own core. But it's helpful if you know that doing certain things satisfies a particular neurotypical need and that you can have a choice in that matter. It may be good in a job interview_f, for example, not to hand flap or do whatever kind of nervous thing you might do when you feel anxiety. We teach those things at the school. So it's more like going through the really complex process of sticking to your own core and at the same time choosing what you do and don't do in terms of your own feeling of success as a minority in a larger culture.

One of the things we do is to watch programs about autism and break down what is good information and how the information is being presented. Some of the kids take issue with language that's used. For example, one parent was talking about how he felt that the autism had essentially stolen his child's soul. A lot of the kids really took issue with that. We try to talk about how you can learn a lot about yourself by knowing what autism is and what researchers are finding. Because many kids on the spectrum tend to be visual learners, they learn a lot by watching these programs and commenting on them with one another.

SGIQ: What contribution do you think the idea of neurodiversity can bring to society or the world?

VP: The students themselves talk about this. Everybody is neurologically wired in a particular way. And if you think of the autism spectrum, you can also just think of the spectrum as existing everywhere. There is a spectrum of neurologies out there. To take the notion of the autism spectrum and expand it to all living beings--that can be a contribution. It can help others understand and respect their differences rather than think of them as separations.

SGIQ: You and Elijah have been doing self-advocacy workshops together.

VP: We are trying to teach families and educators and therapists why it is so important not only to give the people you love who are autistic all the things they need in terms of education and therapy, but also to help them build skills in speaking up for themselves in all kinds of contexts. So they learn to represent themselves rather than have others represent them all the time.

SGIQ: How have the responses been?

EW: I think it is a good thing to do, that it helps adults who have autistic children to help their children out. I like helping the parents out and going places. It's just so awesome.

VP: Usually the kind of workshops we do attract families with younger children. Often the diagnosis of their child was rather recent so they are in a very vulnerable place. The early years can be very challenging, a lot of hard work for families. When they meet Elijah, who's a teenager, who is funny and can talk about his own autism and offer them advice, I think it gives them such hope and a feeling of: "Oh, this is where we are headed. The future is not so scary."

For more information, visit:www.aspieschool.org and www.valerieparadiz.com.

An excerpt from Valerie Paradiž's book Elijah's Cup in which she describes Elijah's experience at a regular school.

I wanted to find out more about the school culture he was living in. It was obviously taking its toll. Elijah was becoming more depressed and shut down. He began hitting himself on the head again, something he hadn't done since he was a toddler, and he talked about "killing himself" and "jumping off a cliff."

I saw that Elijah's stereotypy was most pronounced in the loud cafeteria. I observed him from afar as he flapped about, excited that it was the end of the school day and that I was there for the chess class. Then a boy named Trevor walked into the cafeteria. He was one of the chess players. Elijah recognized him instantly and made his way across the cafeteria in Trevor's direction. He wanted to make contact, so he stood at some remove facing Trevor and waved his arms up and down and undulated his body, looking like Steve Martin when he does his "wild and crazy guy" routine. Trevor was flabbergasted and afraid. He didn't know what to do. When Elijah began to approach him, he stood there paralyzed.

"Why did the chicken cross the road?" I clearly heard Elijah say through the loud echoes of children's voices bouncing off the cinderblock walls of the cafeteria.

Trevor, deeply confused by Elijah's opening, called out, "Get away from me!". . .

"Val, does Trevor think I'm crazy?"

Stung to the core by his question and by what I had just witnessed in the cafeteria, I imagined that Elijah's long days at school often contained such incidents.

When we entered the library, Elijah immediately ran to the table where Trevor and the other boy were sitting and took a place right beside Trevor.

"Why did the chicken cross the road?"

"Get away from me!" Trevor yelled again. "Don't sit next to me!"

Without a second thought, I walked directly to the boys' table . . . I squatted down, making my gaze the same level as Elijah's and Trevor's.

"Listen, guys," I said firmly. They both looked startled by my sudden appearance on the scene. "We need to clear something up here. Trevor, Elijah has a disability that isn't easy to see. That's why you're feeling uncomfortable. Elijah, you're feeling uncomfortable because Trevor keeps telling you to go away." Elijah nodded his head. I turned to Trevor again. "Elijah likes you. He wants to get to know you, but he's nervous, and when he talks to you, he might say things that seem odd." Trevor looked surprised and relieved. "Elijah," I said, "Trevor is uneasy with how you're approaching him. You need to slow down a little and say something like 'Hi, Trevor, I'm Elijah. I'm in your chess class.'" Elijah nodded his head again. "Okay, that's all, guys. Just take it slowly." I walked away trembling.

"Hi, Trevor. I'm Elijah. I'm in your chess class," I heard Elijah say behind me. I spun around on my heels.

"Hi." Trevor answered nervously.

"Can I sit here?" Elijah asked.

"Yes."

"Why did the baby cross the road?"

"I don't know. Why?"

"It was stapled to the chicken."

Trevor laughed out loud. At last, some comic relief!