Note: This article was published before the DSM-5 eliminated the Asperger's label and folded it into the general "autism" diagnosis.
Tasia: Nick is 14, and just finished the 8th grade. He loves science of all kinds. He also loves nature in all of its forms, especially reptiles -- the other day he told his mother he wants to be a herpetologist when he grows up (the first time he's ever talked about what he wants to be when he grows up). His latest obsession is riverside fishing for bass and trout. He even taught himself how to gut and cook a fish.
We were struggling with his behavior. He was a super-anxious kid, and was getting in trouble at school nearly every day, plus constant meltdowns at home. We were at the end of our rope: we didn't know how to parent this kid, we did not know what else to do for him.
We had gone through a couple of therapists, but they weren't helping, things were not working. Dr. Arnold had actually been recommended to us a couple of years before, but I didn't want to drive that far (45 minutes each way, plus traffic). In the end it was so worth the drive!
Dr. Arnold: Nick had a first, full battery assessment with another psychologist in 2006, when he was eight. That person diagnosed Asperger's, anxiety, and sensory issues, but was wise enough to say they thought it really boiled down to Asperger's in its different forms.
I met Nick in October 2009. I have extensive training in behavior management and the neurological issues causing these challenges, and even for me Nick was very challenging. He was a young man who had experienced chronic failure in the classroom and at home which had resulted in severe mistrust and emotional regulation problems. Between the anxiety and failures, it was too much for Nick to handle. There was nothing left to give by anyone in the family, everyone was completely maxed out, everyone was walking on eggshells. I wasn't sure that, ethically, I could teach his family how to manage his behavior, because of the risks involved in trying to do that within a home setting.
Tasia: It was like living in a minefield, Nick had violent outbursts and was constantly exploding.
Dr. Arnold: At this point, Nick's parents thought he only had one emotion, which was rage. That's when we brought Karla in. Because even though I have tons of experience with Asperger's and developmental disabilities, and I love the extreme kids, it was very clear that Nick had zero interest in listening to me -- because I couldn't possibly know what he was going through, not being ASD myself; which was fair.
My concern with Nick was how severe the problems were, and that he needed someone who was ASD to help him understand that he was okay, and that he should accept help from parents and therapists. My challenge as a therapist wasn't that I didn't know what to do, it was that I didn't have any way to get him on my team. When I found Karla, I said, "I just need someone with ASD to tell Nick that he can be an adult with ASD, and it's going to be fine."
Tasia: Nick said to me, between our meeting Dr. Arnold and finding Karla, that, "If I have to see a therapist, I want one who is autistic like me." So I said, "Think about that, Nick -- do you want to be a counselor when you grow up?" And he hung his head and said, "No, no I don't" and you could see in his mind it wasn't the kind of job he was cut out for or the least bit interested in. We realized that the people society says are the most qualified to help him are the people least equipped to understand him. And then, enter Karla -- just as he was asking for a mentor who has autism.
Dr. Arnold: I was not even remotely offended when Karla came in and did a better job than I could with Nick. That was the whole goal. Many ASD kids immediately relate to me because I speak in a factual, non-emotional, logical manner. However, that was not the case with Nick. Nick's parents and I were very grateful that Karla was willing to spend time with Nick.
Karla: When I started working with Nick, I was still working through accepting my own diagnosis, what it meant for me -- that I could be impaired yet as successful as I am as a senior program manager at Intel. I did not accept my own diagnosis cheerfully -- label acceptance would have been easier for me without all the "severely" stuff attached -- the doctors all assured me that I was severely affected. But regardless, I knew that I needed to help other people, to share my gifts, to heal myself and others. (I match best with the "severe kids" versus the nuanced challenged ones; parents should match autistic adults as closely as possible to their kids.)
I was unsure that I wanted to work with a female doctor as I typically do not get along with females, but when I first met Dr. Arnold, she was very humble and we got along well -- there was a lot of passion and concern for the kids in her care, which is why I agreed to work with her.
Dr. Arnold: When Nick started working with me, he didn't know any other people with an ASD diagnosis -- though he tended to gravitate towards kids who were similar to him. He was still, at that point, not entirely convinced about his label. This isn't new; trying to convince people with Asperger's that they have Asperger's is one of the biggest challenges I face. They actively fight me on the label due to this misunderstanding of what ASD is neurologically.
Karla: That is exactly what I did too (actively fight my label).
Tasia: When Nick met Karla, he was not fully accepting of his label, even though we had been trying to help him with it for two years. He still didn't understand what it meant, still hadn't met anyone else on the spectrum.
Karla: When I met Nick at his house one evening, he seemed like a perfectly normal kid and working with him was easy -- I thought his family and Dr. Arnold were the wacky ones. So even though Nick and I were not entirely accepting of our diagnoses, we decided that we were going to go against the world together.
Dr. Arnold: Often when Karla meets the kids I'm treating, she will say that some of them are too different from her for her to help (i.e., have too many abstract or nuanced skills that she does not). When I introduce her to a more extreme teen she thinks they're "normal." It's not acceptance, it's familiarity -- it's normal, comfortable. She insists that Nick is 100% normal, and keeps telling him so (which Tasia very much appreciates).
Karla: Nick and I had several meet-ups, we bonded quite well. Yes, he had challenges but they were honestly not that bad in my eyes. I assured him that his issues were not about autism but about how people were treating him. He was very relieved to find someone who finally just got him.
About this time, I taught in his classroom as a President Obama-launched Engineering in Schools initiative -- and for the first time I recognized the depths of hell Nick was going through. Some of this understanding was because one of the ways I had tried to disprove my own label was by signing up for social skills classes, thinking I could "nail" them and could show everyone else that they were full of sh*t -- but quite the opposite happened. The psychologist said that people who were as affected as me generally end up in institutions! Whenever I would go to these classes, which were one hour per week, I would require 1 to 4 days to recover from the failures and sheer mental exhaustion I would experience there.
When I went to Nick's school, the sensory nightmare of it is almost impossible for me to describe adequately. There was no sensory friendly place for Nick to eat lunch. The cafeteria's ambient decibel level was 95. To top it off, this very bright child had a full-time aide, and a locker right next to the cafeteria in full view of bullies. He had 4 - 5 hours of special ed each week, including speech therapy and social skills in addition to his regular class load -- yet no accommodation for his sensory needs.
Then I had an interaction with Nick's special ed teacher that still gives me PTSD today -- the teacher wasn't taking my queries about the utility of Nick's speech and behavioral therapies seriously, she was using language with undercurrents that I did not understand. The teacher ended up getting very angry with me and Nick, then Nick defended me and got very angry with the teacher, and there was an altercation where people ended up on the floor -- and if I hadn't been there to tell Nick's side of the story, he would have been suspended again
I actually have more sensory issues than Nick -- and Nick always protected me, he has huge empathy for me because I'm more disabled than him in that regard. I suffered so badly because of my sensory issues when I was at the school that Nick said he would come get me for lunch -- and then his teacher wouldn't let him, and that's what started the fight. The providers were treating me like a provider, not a person with ASD -- they truly did not understand that I could not just turn my abstraction/ASD ability on and off at will. They didn't understand that I could have the ability to teach, but could not handle the peripheral social and sensory aspects of being in the school.
Tasia: Nick had been home-schooled before coming to his public middle school for seventh grade, and before that he had been in a Waldorf school which is very, very different from a public school setting. So this was really his first experience in a typical school environment. I had wanted the school to evaluate Nick for an IEP right away, but the school kept putting me off -- they thought we were trying to mainstream him and treat him like a neurotypical kid. It was at least November before they even started the evaluation process -- that is when they met Karla, in the middle of the first IEP, which wasn't working out. And Karla visited the school and was able to give lots of insights why -- things Nick couldn't articulate, things the teachers weren't being entirely open about, possibly because they didn't completely understand autism and just thought Nick was a bad kid.
Karla:To be entirely fair, I feel like the people at the school had a context for everything that was happening, and for their way of thinking that context was probably right. But when someone is more severely affected by autism and can't process so much stuff, and when their abstraction is so low, it becomes an entirely new context. And schools don't really get this. This is why any kids with needs beyond what I call "nuanced challenged" autistic are pulled out of schools. The schools are not equipped to deal with autism as a whole or from this perspective.
I had to quickly ramp into the IEP and 504 process, and did what "any good autistic person would do," which was to research like hell and memorize all the rules. And I thoroughly scrubbed Nick's existing IEP, which was approximately an inch thick and filled with ambiguous statements and abstractions and just plain detritus. I coined a phrase: "the quality of an IEP should be measured in WTFs per page," because that's what I kept writing next to every other paragraph. It was nothing like what the law intended, it was not measurable; it had a lot of statements about his mixed social behavior and nothing about its root cause.
During the next actual IEP meeting, there started to be back-and-forth BS about social skills and what the "problem statement" was. So I stopped the meeting, and went to the whiteboard and did what I do as a program manager at work, which is to align teams of divergent thinkers. To me the root cause and the real problem statement was clear, very black/white, but the team was still focused on irrelevant stuff like eye contact, inappropriate behaviors, social skills -- whereas I was worried about the kid who was having four or five violent meltdowns per week. I know first hand the heath risks involved with this much anxiety and I was shocked that these professionals were more worried for their rules than for his physical health.
So, I made his IEP very explicitly say that his measurable goals for the rest of the year -- and this is when they had eight weeks left for the remainder of seventh grade -- was to have one or fewer violent meltdowns per week, and the argument I gave was that I was worried for his physical long-term health -- I saw a child in a dangerous place and made sure the team saw this too. Meltdowns can kill, from the anxiety.
Everything that the school's professionals tried was behavior-related, and it wasn't working. So we implemented a root cause approach instead. I asked everyone in the room who had worked with Nick if there was anyone there who didn't believe that at his core Nick was a good kid and wanted to succeed. And everyone raised their hands. So, working from that point of trust, I asked everyone to support efforts to help Nick succeed, items that empowered him to make good choices.
It took a lot of convincing the teachers and parents that less is more. Nick didn't need a full-time aide, he needed alone time; so they eliminated his aide. They implemented accommodations: he got to use a cell phone to call his mom to come get him if he thought he could not avoid a meltdown, he got to have a truly sensory-friendly room -- and not just the Health room when sick kids weren't using it.
On Nick's side, I set up a one-page behavior plan, very detailed, with charts, and actions and consequences that he could actually comprehend, versus an inch-thick packet of words. The end result was that he had eight weeks with zero meltdowns.
Tasia: And at home Nick had a different behavior motivation plan going on based on the behavior plan, with the goal that he could earn a pet snake -- a Dumeril's boa. Which also helped him with the motivation for school. The result was that Nick had zero meltdowns during those last weeks. He instantly went from being a misunderstood, odd child with behavior problems to being a supported child with ASD.
Karla: And more of a motivation for him was to prove everyone wrong -- that was more motivating than the snake. But just to prove it, not to show off about it. He would have been able to sass off to the special education teacher who harassed him and said, "I told you so," but since he is a good kid, he didn't do it -- even though he practiced doing it!
Dr. Arnold: The end goal when Karla came to talk to me was that the IEP be boiled down to two pages. One of bullet points of actions and effect so that Nick absolutely understood it, and one very clear chart for the school to follow, and that's it. What was beautiful here is that everyone could understand it, could have a copy, could follow it through, and could easily recognize when the goals were reached.
Examples include a sensory friendly room that Nick could go to for a certain amount of time if he needed to. If he couldn't calm down, he was allowed to use his cell phone to ask his mom to come get him, no questions asked -- which Karla likes to call 100% advocacy, and Dr. Arnold likes that -- because if you believe these kids want to succeed, then you understand they won't abuse this policy -- and they don't.
Tasia: Nick was also given the privilege to raise his hand in class as a stop signal. He would frequently get overwhelmed, and stress in class. He would ask a question with good intentions, the teacher would answer it, and then would say, "Oh, and well, also..." and try to tie it to something else, and Nick would get freaked out, because he needed her to stop after his question was answered -- needed the verbal input to stop. So there was a lot of anxiety. And that was a very hard thing for them to accept, because it's very humbling to simply stop talking when a child silences you -- because that's contrary to what schools are about in terms of controlling children's behavior. They had to be talked into trying it, as they were worried that he would abuse it, but he never did.
He was also given the freedom to leave the class if he needed to, to avoid a meltdown. He did that regularly, went specifically to his quiet room so everyone would know where he was -- and he never abused that either, which shocked them, but worked beautifully.
He took a lot of breaks at first -- he needed time to adjust, was coming off a lot of anxiety, stress, needed to adjust to and trust the new system. And it didn't work perfectly at first, sometimes the conference room he was assigned as a sensory-friendly place would be locked.
Another accommodation was to get him out of homeroom, assembly, anything that did not directly lead to his diploma. So he had a short day, a five-hour day. This is about understanding what Nick needed to succeed in an inclusive environment, as opposed to making him fit into some other person's idea of an inclusive environment.
So, after having multiple violent meltdowns per week during most of seventh grade (prior to the final IEP that we used for the last 8 weeks) he only had three instances of violence/behavior problems during his entire 8th grade year. I would not call them meltdowns but they were problems that called for specific consequences as per his behavior support plan -- the chart Karla created.
What Karla gave him was a toolbox, something he didn't' have before. She gave him context. As Nick started to use the tools, he felt empowered instead of disabled or pitied. As his self esteem grew, so did his other skills.
Dr. Arnold: I think the other critical part was that Nick needed to meet someone like himself, he needed a role model.
Karla: When I first met the IEP team, the school psychologist had Nick on a modified diploma track, and did not ever expect Nick to graduate with a regular diploma.
Tasia: They thought he'd go to jail, to be honest. They'd written him off.
Karla: But this year, he's on track for a regular diploma; he's got straight A's. In fact, all A+'s and one A. He's on track to be the valedictorian. Because of the fact that he's understood, and he has self-esteem, he has the tools he needs to succeed. I think he's brighter than his teachers, but they couldn't see that because all they could see was behaviors -- and behavior out of context.
Dr. Arnold: And this is in a school that is acclaimed for having a program that works with ASD kids, which is why it's more shocking; other districts model their classrooms on it.
Karla: I was invited to this school's special autism program for eighth grade to see what goes on inside, to see how it would work for Nick when he transitioned to eighth grade. What I saw shocked me: the walls were covered with materials about doing social skills and how wrong I am doing it: "20 social rules to remember before I have a conversation," etc. -- everything screams "you're disabled, you're disabled," without a single role model, nothing for me in that room -- and they were excited for me to come see it! I couldn't have lasted there for more than two minutes. In fact, most of the material I use in my presentations that makes fun of today's ASD classrooms is from this class.
I was very, very sad. I advised that Nick not transition to that room -- and part of his new IEP became that he didn't have to be in that room, or talk with its resource person more than 15 minutes per week -- and then only at his discretion, his initiation.
Dr. Arnold: Karla and I have spent a lot of time visiting ASD programs -- me as a Ph.D. who loves ASD, and Karla as someone who HAS ASD. We understand that the people who create these programs are trying, hard. But before I worked with Karla and was able to see through Karla's ASD perspective -- before I asked an ASD person what they thought -- all of my training would have led me to create almost exactly the same kind of programs as the classroom we did not want Nick to be in. Now I can understand that all the training in the world won't help me see through ASD eyes -- I have to ask someone like Karla. That's the reason I work with Karla as much as I can, because a program is only as good as an ASD person can function within it. To date, Karla and I have never been to an ASD program that Karla could function within.
The message I want to get out is that for students like Nick to succeed, they need the following:
- To be matched with ASD role models or at least to be able to name three of them (they must know that people can and do succeed even when they are autistic).
- Their programs should be evaluated by ASD adults.
We do not yet have the infrastructure to make a large scale program like this work but we do have best known methods and can talk to others willing to try about how to connect.
We need autistic adults to come in, and help parents and educators realize how these programs can be improved. We need to work with, not against, ASD.
More information about Karla's advocacy and strategies can be found at Karla's ASD Page.