Tuesday, September 4, 2012

The Starting Equipment

Last week I wrote a post entitled "Equipped" and in it I made the comparison that a baseball player would never play without a mitt and a race car driver would never race at high speeds without a helmet. I'll add one more thing and say a firefighter would never go to a fire without the proper tools to fight the fire. So why then are there teachers without the right equipment, with equipment being knowledge, about Asperger Syndrome and the autism spectrum? Now I'm not saying we need to reinvent the wheel and give every teacher 20 years of training. While that would be nice I think a little information goes a very long way so over the course of the weekend I thought of what the five top starting pieces of equipment would be and here is what I came up with.

Eye contact: If you don't know my story, I was diagnosed at age 20 so I went through school with no diagnosis. All but one of my teachers was very relaxed on eye contact except my 3rd grade teacher as she was the, "look at me when I talk to you" type. She was very quick to say that lack of eye contact was, "Very disrespectful" and was give constant lectures to anyone who denied her the eye contact she demanded. To this day I hear from parents of children that have Aspergers that there are still teachers like this.

When I have presented to teachers and I talk about the struggles of eye contact, and the way I felt in my 3rd grade class, I often get responses of tears as the teachers think back to the past of a student they had that probably, now that they [the teachers] had right equipment, had Asperger Syndrome. So often they will tell me, "Only if I knew then!" What I do tell the teachers in the presentation is that I can do one of two things, I can either look at you in the eye and get fully overwhelmed and feel as if I'm going to explode into a shapeless cloud of anxiety or I can look away and be able to truly focus on the words being spoken. So in the end, by looking away, lack of eye contact is actually a sign of respect because I believe the words one says has far more importance than making eye contact.

Kansas: I use the main concept in my book because this is one of the most important concepts a teacher can understand. What Kansas is, it's a metaphor and I ask the question, "if you were paralyzed in every state except Kansas where would you want to live?" Obviously the answer is Kansas and what Kansas is and means is that people on the autism spectrum will have an activity or interest that is, at many times, the only thing that matters. If it is an interest it could be a school subject, computers, movies, and well, anything really. For me math and weather were my Kansas' is school. In 1st grade I wouldn't go play with all the other kids at recess as it was far more interesting have a conversation about weather and the jet stream and the National Weather Service. I often went into monologue mode and if I got on the subject of my ultimate Kansas of auto racing then I usually spoke with a furious passion.

I know my 1st grade teacher often got frustrated with the sameness of my conversations but my 2nd grade teacher used those interests to springboard into other interests as I wrote on another blog as a guest. When a person on the spectrum talks about their Kansas it can often be one-sided, but a teacher that thinks just outside the box can fully make use of it. My fourth grade teacher gave me a fun task; I did my work quite swiftly and I usually had a lot of down time so she had me figure out how long the Indy 500 would take with an average speed of 1MPH, then 2MPH, then 3MPH and so on and so forth. For most people this would be a tedious task and it would be nothing short of an annoyance and on top of all that this was voluntary, but she used my two Kansas' and I was more than happy to crunch the numbers.

I don't know: I've heard some rather sad stories of teachers overreacting to the sentence of, "I don't know" and it doesn't need to be this way. Take me for example; if we could go back in time to 2nd grade and you asked something about the previous weekend's race or maybe something math or geography related I probably would have given an instant answer. Now, if you went with a follow-up question about something emotional, or something that involves anything social related, there would've been a long pause as my mind would have gone into a panic mode trying to think of the answer. When I say panic I truly mean panic; the panic of absolute fear. I know when asked a question an answer is expected quickly because that's the way the world works. However, when something is asked outside my Kansas I have to think harder and thinking harder never works all that well. I panic and eventually I can only say one thing, "I don't know." I may know the answer, but under the gun of the question I over process.

This can be confusing to teachers, I know it was for my 3rd grade teacher, because it one subject or area we have all the answers and not only that we may be very quick with the answers. Then, just on the other side of the border exiting Kansas, we over-think and take a prolonged amount of time to come up with an answer. I got to the point, as have many other with Aspergers, that any question outside the realm of Kansas was instantly disregarded with an "I don't know." I may have known, but the level of uncomfortableness quite simply wasn't worth it. I said that I've heard some sad stories regarding this and I've heard some teachers have sent kids to the office, taken away recess, and at worst multiple in school suspensions of this "behavior" because, in the words of this one teacher, "This behavior is clearly obstinate and defiant behavior. He knows the answer but just wants control." It's this story that is at my core fueling my passion to get the word out because I've been there, in a way, thankfully I didn't have a teacher that rigid, but my 3rd grade teacher often said, "think harder" and, "what do you mean you don't know?" There are ways around this; maybe give more time for an answer or if a person likes to write perhaps have the student write it down. Not all ways will work with each student but please, above all else, don't take an "I don't know" as a defiant act because we often over-process and when we do so it is uncomfortable so our way to manage our anxiety is to end the question as quickly as possible.

Intake>Expression:  So often we on the spectrum are underestimated and it might be the topic here that helps create this. The section title is that out level of intake is much greater than our ability to express. This also probably adds to the ability to be so easily bullied because we are most often unable to express what we need. We can't simply say, "I need help" because that requires socializing and in, at least for me, I think and rethink and triple-think every thing I say beforehand. If I ask for help I can't foresee what the response will be. Will I be made fun of? Will I be looked down upon? If someone is troubling me and I speak up will they trouble me even more?

On the other side we take in everything. We may not show it, and we may not have the ability to let you know it, but we are always listening and will more often than not know everything you said. It seems obvious but many teachers often make the mistake of talking about a student that's in their presence as if they aren't there and this quite simply should never happen. We may not have the same ability to express our feelings, thoughts, emotions and fears but trust me when I say we have the same feelings, thoughts, emotions, and fears as everyone else and for that we should be treated the same.

When things did trouble me or if their was an assignment that I was having issues with, when asked if I were having issues with whatever that may have been, I would instantly say no, or I don't know. Often times I would open up later in time and ask for help, but I had to get over a great chasm of fear on how, exactly, to express the need for help.

One of the reasons a teacher needs all the right equipment is because if a teacher respects Kansas, can encourage in the right way, doesn't demand eye contact, well, I know I felt more secure and safe. If a teacher is constantly having a struggle, or is using lines such as, "what do you mean you don't know?" the odds of, well, I go back to 3rd grade and I never asked for help and never expressed a need for help even though there were times I needed it greatly.

If you met one person... Okay, this is where it gets somewhat murky for all of society as let's take all the personal examples I just gave and toss them out the door. Society likes everything to fit into a nice tidy box but the autism spectrum is not a nice tidy box. There's a saying that, "If you've met one person on the autism you've only met one person with autism." This is so true because, and sadly many teachers have not learned this. I said I was good in math and there are other people on the spectrum that are. However, the next person you meet may have very great artistic abilities and no math. I was the other way and have no art abilities (even my stick figure people were disfigured!). One person may use very formal language as if it were the 18th century and the next person may speak in nothing but short phrases. A majority of us hates anything remotely loud but the next may crave loud noises and go out of their way to create those loud noises.

Okay, so I could write on and on of examples, but this is such an important thing to understand. Using the first four subjects on here a person with Aspergers will be affected differently on each, or maybe not at all. Kansas is a great example because Kansas can be anything. One person on the spectrum may take everything as literal as possible (if I was doing the top six things that most certainly would be #6) and the next may have a fluid understanding of sarcasm.

I have heard from teachers that didn't understand this, "if you've met one you've met one" concept and said they felt frustrated that the methods they used on the first student they had that had Aspergers didn't work on the second one. They then said they wish that had known which leads me to the conclusion of this post. As I said at the beginning, it would nice if every teacher got years and years of training on this, but in the end every little bit of info helps. I've heard from some school personnel that, "learning about the autism spectrum would take resources we don't have." Maybe it's because I already know about it, but I don't think it takes all that much to get at least a sense of the autism spectrum. Our teachers need the equipping as I know that my 2nd and 4th grade teachers worked wonders for me. It was almost as if they were able to read this post and knew all this info back then and I am grateful for that because there is so much potential and growth for those with Aspergers but only if we survive the school years in one piece and with the right equipment the chances of that are all the more higher.


  1. I homeschool my kids but i sure remember being in school. I think there are many on the cusp of the spectrum or within that resonate with this and go on undiagnosed. Personally i think you have to respect each kid as an individual and i think that takes a lot of work for teachers. They are not encouraged to take a personal approach with kids...and that nice tidy little box of normal children is becoming smaller and smaller. The only way to help this i think is to encourage teachers to have individual personal relationships with kids...all kids. There are more and more of special kids as we evolve and each has individual needs. It really isn't totally the teachers fault..they simply aren't encouraged to have the skills to treat each child as an individual. I have worked with kids with autism and it takes a little time of using different approaches to communicate effectively with them. Early Childhood Educators are trained for being with kids. Teachers should be trained as an ECE and then specialize and then go to teachers college. If we started doing this now then shortly kids would have the support they need. In my experience kids that fall within the spectrum seem to be Very intelligent and gifted in some way. They see life in more ways...their intuition is strong. I think it would help teachers if they were encouraged to use their "feelings" about what a kids needs. Just a thought though.

  2. It's not just teachers you are helping to understand Aspergers. I, as a parent, am learning so much from your blog about my 5 yr old son. We get very little, actually no help from our county (state) as he is not "severe" as they call it and "he'll grow out of it". So all the information I can get is changing our lives one day at a time. Thank you so much.

  3. I wish I could go back in time and have you do a presentation at my primary school.
    That sentence "If you've met one person with Autism, you've only et one person with Autism." is so important. As I've already told you (Aaron) I've been told my by 6th grade teacher that I couldn't possibly have Autism, because I was able to go to parties and hold schoolpresentations, where the kid with Autism in my class couldn't. I didn't have all the exact same issues, so I couldn't possibly have the same diagnosis. I was then sent to 'kanjertraining' which is a (Dutch) training for assertiveness.

    Don't compare one person to a person with Autism to see if the first person can possibly have Autism. That's not a fair comparison, as "If you've only met one person with Autism, you've only met one person with Autism." Rather have that person diagnosed individually without comparing to have a fair diagnosis.