Monday, October 11, 2010

Why We Walk

This past Saturday the Walk Now for Autism Speaks event was held in St. Louis. I had never been to one nor did I know what it was about. I didn't know how many people would show up or what type of atmosphere there would be, but this year I would find out the answers because I would be working the TouchPoint Autism Services booth.

I got there rather early and as the minutes ticked away the empty parking lot slowly started to come to life. I had no idea how many people would be there, and already at 7:45 I was impressed.

By 9:00 I was shocked. This event wasn't just a few families getting together to raise awareness but rather a whole community there for one cause.

There were parents, sisters, brothers, sons, daughters, grandparents, uncles, aunts, and every other type of family member you could imagine along with many who are on the autism spectrum.

While the general world hears the word autism and instantly thinks of the worst case negative situation, this community of walkers embraces the people they walk for.

By the time the start of the walk came the mass of humanity was massive. I also didn't know what type of atmosphere there would be, but it was like a celebration; a celebration of who we are on the spectrum. Parents were having conversations, sharing stories, and the best part was there was understanding between them.

As the walk started I became highly reflective and thought about so many people walking for the same reason. But what was this reason? What motivation was there for the tens of thousands of people to give up their Saturday morning to take a 1.5 mile walk?

I thought on those questions and came up with many answers. The first one, obviously, was that these people love someone on the spectrum. But walking? Then I saw a t-shirt that said, "Everyone wants to be heard" and then everything made sense.

With so many people having a collective cause being heard is easier. We don't walk to simply walk, we walk to be heard. Our messages may be different be it that I, myself, want the world to know that I am not defective but simply different (Aren't we all?), while others may walk to say that about their son or daughter.

The current numbers for autism state that 1 in about 100 will be on the spectrum, but that doesn't state how many people will be affected by the spectrum. The whole family becomes involved when a child is on the spectrum, and these walks allows the entire family to be heard.

So why do we walk? We walk to show the world that we exist. We walk to show the world that, while we have challenges, we won't run away from them. We walk to show our support for ourselves, or other loved ones, but most of all we walk in unison with others to be heard. Simply heard.


  1. Hey Aaron, I have a question. Some people actually asked me a question I find very hard to answer. I told them that if you know one person with Autism, you only know one person with Autism. They asked me what I meant. I told them that not every person with Autism may share the exact same symptoms and that we're all unique as any other person. Then they asked me: "But if every person with Autism may not share the exact same symptoms and also have different characteristics, how can you tell for sure someone's on the spectrum?" I answered "Well they usually share most of the symptoms, but maybe just not all or less or more than others. Also next to the symptoms they have their own character, just because they are human. But it's mostly because they share a great amount of symptoms... Just... More... Or less... Or not all..."
    "I still don't get it, but never mind"
    I just didn't know how to explain it anymore. Seeing as you work for Touchpoint and have probably had to explain this many times (I think), could you maybe tell me how to explain this to my friends? I understand perfectly well what you mean, since I'm on the Autism spectrum as well (Asperger) and not every person with Autismn (even Asperger for that matter) is the same as me. But I just don't get how to explain this to someone who isn't used to dealing with people on the spectrum!
    So yea, could you please help me out here? Thanks :)

  2. Well said, Aaron. We also walk to have a visual way to say thanks to the people who donate so generously to Autism Speaks on our loved one's behalf.

  3. Issha, if this post didn't do the trick ( I will do a more in-depth rewrite of it sometime this week. Let me know.

  4. Well that's what I explained I guess. But the thing that confused them is that not everything counts for everyone on the spectrum (like with the drums example) and they wondered how in the world you could diagnose someone as being on the spectrum when they're all different and don't have the exact same symptoms. How you can ever be sure of it. I told them that it's being able to identify yourself with most of the symptoms, but usually not all and that you can respond differently to those symptoms, seeing as everyone has their own personality.
    They still didn't understand. If you react differently, how can people notice it at you?
    I got really stuck and still am. How do I explain what defines autism, without defining the person?

  5. This is very interesting to read - I loved the phrase "We walk to be heard" - that really is such an interesting phrase.

  6. I have to agree with what Issha is talking about. I have a son who has been diagnose with Autism and from all my friends they tell me that all the see is a normal little boy that they don't see any type of disability. I in return replied that if they spent a lot of time with him they would see it but it is obvious that the early intervention that I have been getting for my son is working so that I am doing the right things for him. I just gave up explaining what Autism is to people because I have come to learn that if they have someone in their family that has this diagnosis that they will never truely understand what we are talking about.

  7. My interpretation of " if you know one person with Autism, you only know one person with Autism" is that there are many characteristics of the spectrum and even two who have the same characteristic may handle, present, show, express, vocalize, etc etc it differently. for example, stimming. My son stims but others who stim may do it differently. My son has motor planning concerns but how it is seen in him may be very differnt then someone else with motorplanning concerns. Some are hyposenstive some are hypersenstive. My sons needs input to get his system going by jumping, others may need it in other ways. My sons communication is compromised by emotion and he relies on visual cues to express his needs, others may be different. Hope that helps :) Those on the spectrum must meet certain criteria to get the dx however the criteria can present in various ways that could be very different then someone else on the spectrum :) Hope that helps :)

  8. Next April I will be walking from NY,NY to Long Beach,CA to benefit autism. If you would like more information on this event you may contact me at:

    or you can go to...

  9. My son is on the spectrum (he has classic autism) and I explain how a person is diagnosed with autism by saying that to be diagnosed with autism, you have to have deficits in three core areas, which are communication, restricted/repetitive behaviors, and social. These deficits must meet certain criteria, but their severity can differ and they can manifest differently per individual. So basically, two people could have a deficit in the same area, but it could look different. Like repetitive behaviors: one individual may line things up, another might spin an object. They look different, but they are both repetitive behaviors. And as I said, the severity of the deficits may vary from individual to individual. One person affected with autism may have more restricted behaviors than another. I know that the diagnostic criteria for Aspberger is a little different for autism, but I'm not sure what those difference are.)

  10. Issha, I explain it like this. Autism is a disorder of communication. Think of it as having the wires crossed, like when you have your car repaired by that shady guy at the corner repair shop that wants you to come by after hours. And now sometimes, when you turn on the heat, the wipers go. That’s a lot like Autism.

    Autistic people don’t understand the subtlety and nuances of conversation and body language. It’s a lot like going to a foreign country where the language is similar to your own, but not the same. You can pick out familiar sounding words and phrases, and you may ever learn how to speak it sort of. But you may never learn WHY things are said in certain situations, just that they are.

    Sometimes, the wires get crossed, and maybe fluorescent lights hurt, loud noises make you nauseated. Most of the symptoms of autism are on a sliding scale. The ability to push words out with your voice…at one end of the sliding scale are the kids who just aren’t wired to do that. At the other, are the people who can’t seem to shut it off. It’s like they have a little sportscaster in their heads, giving you a play-by-play of every thought or observation that flits through their brains, whether it’s relevant or not, and they can’t turn it off. Most autistic people are in between. Here’s the real kicker – where you are on this sliding scale, for each symptom, can change every day, several times a day. There are physical inputs; too little or not enough, tastes, touch – both needing or avoiding it, textures, scent or lack of it, sound, even seeing too much – too much visual stimulation – can easily overwhelm an autistic person.

    The next time you meet an autistic person, be amazed at what they have to prepare themselves for just to go out into the world every day, which you take for granted. You will never meet a braver person; you will never meet someone that has to learn so much every day, just to function.

  11. My eldest daughter had NO self esteem (poor me everybody hates me) while my youngest has a triple dose (I'm awesome! Everybody loves me!) My grandaughter worries about everything until her hair and eyelashes fall out...grandson just wrecks everything like a tornado. All on the spectrum...all different.