Picture an air filter. What does it do? It stops all the dust and bits from entering your home and filling your house and body with all sorts of things they don’t really need. I liken this to what happens when I get what always feels like an attack – an overload of sensory stimuli. My filter does not work like everyone else’s – like yours does, not unless you also have FASD.
For instance, you or someone else may walk into a coffee shop, read the menu, order your coffee and go on with whatever it is you are doing and the rest of your day. You take in all the things I am going to describe, but decide in a quick moment “these things are not important – IGNORE”. In fact, this may be a daily thing for someone, or you might do it multiple times in one day. It is something you might look forward too, enjoy and savour. When I walk into a coffee shop it is a very different experience.
For me, first I have to take into account that, by walking into the shop, I have radically changed the environment I was in mere seconds ago. Everything – from temperature, to smells, to colour, to everything I can see around me, to sounds, to how things feel, to the physical closeness of people. My brain takes these all in (as does, I am sure, yours). However your brain quickly – and automatically – determines what is useful and what is not. For example, you know right away that the man with the lap top who also has a man-bun in his hair (why does he have that??) sitting at a table is not important. I can’t help but notice and try to figure out if I need to pay attention to him. Neither can I ignore ALL the sounds; talking (like 10 different conversations going on at the same time); humming sounds from lights, shuffling feet, cell phones ringing with a million different ring tones, the coffee machine grinding noise, the shouting of names after someone has ordered, the tap, tap, tap of laptop keys (and yes, I can HEAR them) music playing, purses dropping on the floor, shopping bags rustling, doors opening and closing) it can feel like an attack on my system. It doesn’t have to be loud it just has to be every sound ever in a coffee shop. The lighting – overhead, fluorescent, bouncing off anything shiny like glass or silver machines, coming in from outside and changing if a cloud covers the sun). And so many smells – they can be awful, even though I KNOW that they are just fine to other people. People bumping into me is uncomfortable. My filter has let all of this in. I have no defence against it.
Now I have to make my way up to the counter, with all this going on, keeping in mind what I would like to order. Do I have my coffee card? Cash? Do I have my wallet? Most likely I know I have these things, but I have to struggle to remember (and that causes me to be very uncertain because what if I don’t have it??). There are people in front waiting to order and people behind me. The people in front order their drinks; now it is my turn. The barista is very friendly. It is her job, but I often do not remember it is her job to be nice (because of everything that is going on around me), then I feel like it is my job to continue the interaction because of social rules, even though I actually KNOW I don’t have to in this situation. “Hi how are you? What can I get you today?” she asks. The people behind me are talking and I can hear them. Two conversations at once. Now I am trying to process what the Barista says. I feel I MUST answer – “I am fine” how are you?” I ask. She says she is fine. I think I have to say something more. I stumble over finding something more to say. What do I say? “What can I get you she repeats?” I am looking at everything around me. I know what I want. I order it every single time I go to the coffee shop; I never deviate because it is just too hard to think when I am in this kind of a situation. But I can’t seem to process. My filter has let too much information pass, I am stuck shuffling through all the information; just to pick out what it is I want. Then I start to panic. I am not getting the information out quickly enough, I am wasting the barista’s time! She isn’t going to say anything because that would be rude, I start to make incoherent sounds, umm umm err. I finally spit out “Americano!” an Americano please.” “Room for cream?” she asks Again another question. I still have to concentrate to answer. “Yes” I respond. Then she asks “is that all?” Is it? Do I want something else? If so what? There are many things on display I could get. Do I want any of them? Am I hungry? I am taking too much time!! “No thanks” I reply.
Then she asks for payment, and it’s another round of panic, because no matter how many times I have done this I never seem to have my wallet out. I mentally chastise myself every time. I had time to do this in line up; it would have gone much faster if only I had remembered. Now I am stuck fumbling for the payment option, I am just wasting everyone’s time. Finally the interaction is over, and all I have to do is move to the other end of the counter and wait for my drink! Then: which is my cup? Do I have the right one? What if I don’t? What do I do? After finally grabbing my drink, I make my way over to the table that holds the cream and sugar. I finally have a cup of coffee! All this probably happens within a few minutes but it feels like forever and my stress level is way up.
The point of this rather long – and very incompletely detailed – experience is to highlight what goes into doing something other people see as very simple. But it takes many times more energy for me, because my brain is built and functions differently. I have used a coffee shop as an example but these “moments” occur all day long and add up during the day, and can leave me – and most people with FASD that I know – very mentally exhausted. All this does not mean I avoid going for coffee or never leave my house. I do these things; it just takes so much more energy. Some of the time I have found ways to minimize these sensory and information overload situations. Other times, there is no real way around them. That is just life.
I tend to avoid very busy “peak times” in stores. So I try not to go to shops on the weekend, or go places I know will be busy. For example around 3:00 is when the school crowd goes for coffee, I avoid it. Or I go very early morning to a grocery store. I visit the same coffee shop, clothing store, grocery shop etc. all the time as my rule for coping. Variety is not fun. This way I know the layout and what to expect and I am not bombarded by as much of the sensory stuff. A sense of familiarity helps, but doesn’t stop the stress. It just minimizes it somewhat. Sometimes wearing headphones works, because then I can just focus on one sound stimulus. Even wearing sunglasses helps in certain places.
Recognizing what works and what doesn’t. For example, if there is a different store or place I decide to go into for some reason and it has weird lighting or very loud music, I either do not go into it or really limit my time there. And recognize when I must leave. The signs are different for everyone.
I try to be kind to myself (with sometimes mixed results). That is one of the harder pieces of advice I have learned; to be kind to myself. It does not come easy; to remember that my brain works differently. I don’t have to explain to anyone that it does; only to remember myself that this is normal for me.
I try not to go places when I am having an “off” day. Sometimes this is unavoidable if I have to go to work, but I sure don’t go shopping or for coffee on “off days”; it is just not worth it.
I’d like you to consider that sensory issues are not in the diagnostic guidelines, but I think they should be. Almost every person I know who has FASD, children, teens and adults, has sensory problems that can make things very difficult. When you combine them with processing and memory problems, life can be very draining and can become extremely difficult. It can look like being a “jerk, or moody – refusal to participate, sometimes it looks like agitation, or in children – hyperactivity. And these things can also make it very hard because the words “it’s just behavior” get thrown around like it’s a conscious choice, and we can fix it. Wrong. It is neurological. Period, end of story. I am lucky – I can actually understand and verbalize – now, today, at the age of 35 – what is happening to me. Because I know this – now – I can recover more quickly – now – than someone with FASD who is much younger and does not understand or cannot verbalize as well – and may never be able to do so.
It helps us if those of you who do not have FASD remember that.
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