A couple of days ago my friend Ib, of the blog Tiny Grace Notes, whom I was staying with, drove me to the airport. Ib knows me pretty well and could tell I was nervous, as I have become increasingly as I get older, about getting to the airport, going through security and making my flight, even though we were leaving ample time to do all of that. Still the combination of nerves due to traveling, my busy work schedule, being away from my family for so long, being tired and going to an unfamiliar airport had me on high alert.
It was snowing a little so we needed to have the window wipers on or Ib wouldn’t be able to see well enough to drive safely. But the wipers made a scraping noise that I found almost intolerable. Every time the wipers ran across the window they vibrated and made a noise that was akin to finger nails being raked along a chalk board. It was jarring and I could feel my body tense, so I gritted my teeth and began an internal dialogue with myself to try to calm and as I did all of this, I thought of my daughter. I thought about what it must be like to be bombarded with sounds and sensations that she cannot speak of, or if she does speak of them, the words that she speaks are not what she intends to say, so people are left confused, asking questions or simply ignoring.
As we drove and Ib, being Ib, had already sensed my tension and anxiety and was doing everything in her power to take care of me, I thought about how it is only recently that I’ve become hyper aware of certain sounds, sights, tastes, smells, and how things feel to the touch. It is because of my daughter and other Autistic people I’ve met and/or read and heard speak about such things, that I have begun to see how, things I once learned to ignore are now things I cannot ignore, like those window wipers scraping against the window and making me so upset it was all I could do to sit quietly and not begin to cry. I am grateful for this as it makes me far more understanding of what my daughter and others might be going through at times.
Ib began to very quietly and gently tell me what she was about to do, before she did it. So, for example, she would say things like, (I’m making this up as I can’t remember her exact words now) “just up ahead I’m going to slow a little and get into the right lane” or “the exit we want is in another 2 miles to the left” or whatever it was, she would say these things in that lovely, mellifluous voice of hers and I began to calm down. Ibby was modeling, actively demonstrating what I need to do for my daughter. She was also being a kind, sensitive and deeply compassionate friend to me and I sat there, my eyes fixed on the traffic around us, feeling so thankful that I know her and am friends with her.
As we drove along and I began to relax a little, I imagined a place where non autistic people would go where they would be given the very real experience of what it might be like for an Autistic person. I fantasized that there would be all manner of sensations, highly elevated and constantly changing as examples of what might be another person’s experience of daily life. Just as I found those window wipers so harsh and grating that I could not engage in conversation, I imagined that this place would both bombard the person as well as under stimulate so the person could experience what it is like to alternate between not being able to hear, taste, see, feel, smell and during all of this, demands would be placed on the person. Not just demands, but the person would be required to answer questions within a specific time frame and if they didn’t answer or got the answer wrong they would be required to go back and start all over again. However regardless of whether they got the answer right the sensations would remain, the things they would try to do to calm themselves would not be allowed or taken away and they would be forced to stay in this place indefinitely.
As Ibby helped me retrieve my bags from the car I felt tremendous relief knowing that I would be able to manage the curbside check-in, knew I would not lose the ability to speak, knew I would be able to find the correct line to go through for security, find the correct gate and wait for my flight. All the things I do without thinking, without questioning, things I take for granted. But I also was aware that this relief is not what others, others like my daughter, necessarily experience.
Emma's Hope Book 
Catherine Faherty, while working at TEACCH, developed a wonderful program that tried to do this, called “Understanding Friends”. I’ve also noticed an increased sensory (and social, and communication) awareness among those of us who spend a lot of time thinking about autism, and I wonder if it isn’t a kind of giving ourselves permission to experience the world through our senses. Similarly, I’ve noticed many times that adults who are diagnosed in adulthood with ASD often start to “look more autistic” following the formal diagnosis, perhaps because of being given permission to be who they are….
Yes, that is true for me (being recently diagnosed). I’ve stopped fighting with myself and stopped trying to hide my anxiety and issues. Life is so much more freeing with acceptance and not having to fight myself anymore. As a consequence, I suffer less anxiety than before, knowing that if something happens, I don’t have to pretend to be alright all the time. Shame I only got to this place as an adult, but it’s a wonderful gift anyway.
This is so interesting. I think it must be true for many. I know I am much more aware and become much more easily overloaded. I am guessing I’ve always been sensitive to these things but had learned to ignore or as you write, now give myself permission.
What you are speaking about is what I had to remind the team who works with my daughter and have either forgotten what she has to deal with daily, or simply do not want to admit what she deals with all the time. I have learned to stop meetings and remind people everything that is going on in the meeting room – all the sounds, smells, sights, etc – and say, “This is what my daughter is experiencing all the time and cannot filter out. Think about how it is to live her life and how you would deal with all that stress.” It slows them down a little bit, but I don’t know if they retain that thinking when they are actually with her. Something we parents need to reinforce to those who work with our children – something we need to remind them constantly until we see they are actually accounting for these sensory issues with our children and not penalizing them.
Being told about someone’s hypothetical sensitivities is much easier to brush off and doesn’t really require much from others. I wonder if the response would be far more immediate and compassionate if that meeting was abruptly infused with flashing lights and blaring noises that came at irregular intervals while everyone’s voices were held at the same volume. Sometimes it’s difficult and even impossible for some people to really understand what another goes through until they’ve had to go through something similar. (Not that I’m suggesting you show up at your next meeting armed with a strobe light and boom box, although…) 😉
Reblogged this on Walkin' on the edge and commented:
Two rebloggs in one day. I know. But this post struck a nerve (pun intended) re. sensory awareness and NT’s being sensitive to it. My son is a seeker, so as far as I can tell, it takes a lot of input to make him overloaded. He stims when we travel by plane (but who wouldn’t!). There are people out there, autistics we know and love, who deal with the pressure of sensory issues CONSTANTLY. If we who do NOT deal with it can understand just a small piece of the strain this causes, we can help the world be a better place – for them AND for us.
PK – Thanks for the comment!
Terrific (as usual). Here’s a recent article about sensory overload, if you haven’t seen it. I’m writing my own blog post on it, but thought you might like to see this when you have the time to glance at it. About the “Intense World Theory” of autism.
View at Medium.com
Definitely the best “autism theory” I’ve read to date. You know I interviewed both Henry and Kamila Markram when I was invited to attend a conference they were presenting at in Jerusalem about a year and a half ago. They are doing really interesting work and were delightful to speak with.
Windshield wipers are iffy. If I’m driving a car with a squeaky one, I’ll either buy earplugs at the nearest place that sells them, or if it’s just a summer storm, I’ll wait it out. I hate the squeaking that much.
I’m okay with non-squeaky windshield wipers though.
But, yeah, I get why you were upset there. My strategy is to bring a book and read – I can hyperfocus on what I’m reading and block out the noise that way. I’m glad you were with someone supportive when it happened.
I couldn’t have had a better person to be with. Ib totally “got” it and actually had already sensed I was upset before I said anything. She’s a good friend and I’m lucky to have her in my life!
People who can talk you down are wonderful! I just need people to talk about “nothing” sometimes to distract me. When I forget to do it for my son, he reminds me and I’m happy that I can do that for him. It’s amazing how quickly it works (or maybe it’s just a Mommy Power). I hope I can provide that sort of support as long as he needs it, until he learns to cope by himself. Something my parents never did for me 😦
Aw… you’re a good mom, Kelly. I’m sad that your parents couldn’t provide you with the kindness, understanding and support you needed. We all need and want that from our parents especially.
How wonderful she was able to do that for you (and that it worked!). Airports are the worst! Thanks for sharing this, reminds me of what my son most likely experiences every day.
Airports are awful! I’m definitely getting worse about traveling as I get older and it hasn’t helped that security measures just keep making it more stressful.
Those wipers are yikes. Sorry about that. The whole family loved having you here. Promise when you come back: better wipers!
I loved being with you and your beautiful family Ib. No worries about the wipers, seriously, you were wonderful and I came away with a better understanding of how jarring sensory stuff can be, so I’m actually really grateful for those wipers! And YOU! Really, really grateful for you!!
Double empathy whammy. 😀
Ha!
Totally relate to the sensory overload thing. If more than one person is speaking in a group situation plus music or other background noise, it makes me want to cry or shout. Sometimes I do cos I just can’t bear it.
I love the idea of a sensory overload education resource. I think you could be on to a great training idea. x
It IS a good training idea, right?!
Yes. Let’s talk!
Double empathy whammy…that’s cool. I think it’s a good description of friendship. Both people are focused on how it is like for their friend instead of their own self moreso, even as their own experience jars and nettles and tries to throw them off course. This brings us together instead of apart, and makes the world a hospitable place.
I love that you and I have always had a kind of mutual back and forth, ever since we met. I’ve reached out to you, you’ve reached out to me and together we have supported and encouraged each other, that’s what good friends do for one another and I’m so lucky to have you as my friend/sister.
Ibby was modeling great behavior…but you were also modeling terrific insights; the fact that you were stepping back, imagining how others feel, think and experience the world…it’s a wonderful thing. My sense is that autistics struggle precisely because so few people make an effort to empathize. The world just needs more Ibbys and Arianes. You guys are awesome.
((((m kelter)))) What a lovely comment. Thank you.
After having read this blog, I was in a clinical situation, awaiting a potentially unpleasant procedure.
Next to me was a woman who was waiting for the same thing. We were kept waiting a very long time. I could see how nervous she was and obviously the waiting really wasn’t helping, on uncomfortable seats too. I was feeling ok due to being on happy steroids, but I wanted to help her, so I remembered this post and Ibby ‘talking you down’ and thought I could do that for this woman.
So I got her to talk to me about whatever and within that we discovered that she used to live in the lovely old part of the village where I now live and we chatted for some time, which I could see calmed her and made her feel her more human self, rather than just being a patient.
In the end I opted to leave and come back to do it another day, because is didn’t want to wait any longer. She stayed and seemed genuinely sad that I was going.
I just wanted to thank you for the inspiration. x
Oh I love reading this. And I love that Ibby’s kind actions are like the ripple effect!
How wonderful. Thank you so much for telling me. You’ve made my day!
I love the ripple effect too. x
Double empathy! Such a great thing:)
I find this so delightful! It surprised me to find Ibby doing the exact same thing Doc does when I am having a hard time in the car. The DC Beltway is scary for anyone, and, in a our 1937 car, people honk at us a lot. Or they recognize us and honk to wave. Sometimes, I just can’t take it, with the trucks and flashing lights. Orange barrels and signs are my nemesis, too. They are so disorienting, and a line of them feels like someone is punching me. Doc will describe what is about to happen, to prepare me, and pull my focus away from the moment’s harm. It helps so much, and I feel much more in control. He also will make the situation happy fun, in a gentle way, calling the barrels my friends, saying they are happy to see me. All is well, and I smile, knowing he understands, and is proud of me, just as I am.
How lovely to have someone who gets it and responds so brilliantly. Glad you have that Chou Chou (written from my kitchen, overlooking the rail track, choo choo!) x
Thank you, dear Jet Black! XO!
This is what my boyfriend does (esp. the “Then we’re going to X. Then we’re going to Y.”– unfortunately/amusingly, I think it makes bystanders think he’s abusing me or bossing me around). I can often be heard exclaiming “I need a list! I’m freakin’ out!” =p
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