On Stimming and Autism

If you you have a child "on the spectrum" then you have probably heard of "stimming" and if you've heard of "stimming" you've probably also heard of "quiet hands." First, you should know what stimming is. For someone who is "typical" the best way to understand the concept is to think of when you twirl your hair, tap your pencil, bounce your leg rapidly, etc. We associate these types of behavior with being nervous and do them to calm ourselves down and help us focus. For someone who has Autism, this type of behavior is intensified and pretty easily identified. Some people with Autism stim in several different ways, i.e. spinning, twirling, flapping hands, pacing, running back and forth, jumping up and down in a single area. All of these are done for long periods of time, meaning much longer than a "typical" person would twirl their hair, bounce their leg, etc. My son, for example, spends about 75% of his day jumping or engaged in some other type of stimming behavior. Here is an example of a stimming behavior:

When this video was taken, my son had not yet been diagnosed with Autism. I had no idea why he was behaving this way. I had never heard of "stimming." A little over a year after this video was taken, he was diagnosed with Autism. Here is one more example of a stimming behavior:

This is actually a good example of two types of stimming behavior (jumping and pacing/running back and forth). And just for good measure, here is one more example of a stimming behavior:

So, now that you know a what "stimming" actually looks like, let's get to the true purpose of this post. So today, while scrolling through my Facebook news feed, I found a post from the Autism Society of America. The post was a link to another writer's blog post entitled, "10 Things Every Teacher Should Know About Autism" by their guest blogger Ron Sandison.

Here is a link: 10 Things Every Teacher Should Know About Autism


Let me save you some time. The article is good, except for a couple of questionable "opinions." Here is the "opinion" that bothers me the most:

"Children with autism may display stimming behavior. When you bite your nails, tap your pencil, or twirl your hair, you are engaging in the behavior pattern called stimming. This behavior with children of autism can include flapping their hands up-and-down, pacing in circles, rocking back-and-forth, or spinning their whole body. Autistic stimming can be a hindrance by prohibiting the child from interacting with peers" (#6).

The problem with this can easily be cleared up with this response from a "random" Facebook commenter named Michael Rock. His comment was as follows:

"Stimming is not a hindrance. It is a necessary comforting tool for many people with autism. Telling an autistic person to not stim is like telling a blind person not to use a cane or a deaf person not to use sign language."

I have read numerous articles on all sides of the debate about stimming behavior, but you know what I've found? It doesn't matter what articles say should or should not be done when speaking about stimming. What matters the most is what my son needs. My son uses stimming as a method for interacting with a world where he has little to no voice. This is why we don't dare use "quiet hands" as a method to stop him. If I stop him from stimming, for him, it's like I've stopped him from breathing. He doesn't stop stimming because I tell him to stop or because I physically stop him. (I actually don't do that unless I absolutely have to because it's not good for him). Each time that I have felt the need to stop him from stimming, i.e. the neighbors who live below us complain about his jumping, I am faced with a never ending battle. Why? Because he needs to stim. I agree wholeheartedly with Mr. Rock because I have seen my son. He's happy when he's jumping. He's content playing in the salt. The alternative is for him to attempt to run away or "wander" from his caretakers or have a complete meltdown because he's being over or under stimulated and can't interact with the world around him in a way that is comfortable for him.

Perhaps you have met someone who is completely annoyed by stimming behaviors. These people don't understand Autism. Consider this: What if everything around you was way too loud and you could hear everything, but you couldn't tune it out? Would this bother you? This is what it's like for someone with Autism. They deal with this issue by stimming. If you couldn't hear, you would find a way to communicate. If you couldn't see, you would find a way to get around. This is the same concept for people who have Autism and stim, so instead of judging and complaining to your neighbors because their child is "different" in a way that you don't understand, perhaps educating yourself would be more productive. Currently the CDC says that 1 in 68 children have an Autism Spectrum Disorder. That is a very high number and it baffles me that more people aren't educated as a result, but that's the fact, so the best way to combat discrimination like this: Autism Speaks Letter on the Reginald Latson Case is to educate ourselves and everyone around us.

7 Things to Say to Parents of Children with Special Needs

I originally wrote this as a note on Facebook, which not everyone could see, but I think this is appropriate after seeing a post on Facebook from The Autism Society of America which asked, "What do you wish people WOULD say?" linking the following article: http://www.washingtonpost.com/news/parenting/wp/2014/09/15/4-things-parents-of-kids-with-special-needs-wish-you-wouldnt-say/

This in response to a note that has been shared numerous times, first posted by Special Needs Parent Association titled, "7 Things Not to Say to Parents of Kids With Special Needs."

1. "Aw, your child is so cute." This was also on the list of what not to say, but only because it was more specific. For example, "Your child is so cute when he tries to talk." Parents of special needs children are a lot like any other parent. We want to be told that our child is cute. We do not, however, want to hear that it is cute when our child struggles. I mean, is it cute when your child struggles? Or just a bit frustrating? So, when you say, "Your child is cute," leave it at that. No need for further explanation.

 He is pretty cute, though, right?

2. As a parent of a child with special needs, I often find myself telling someone my child's diagnosis before they ask because my child can't talk to them (He has Autism), so the minute I reveal his diagnosis, feel free to ask, "What is Autism? What does that mean for him? Is their a cure?," etc. I definitely want to answer your questions and want you to be informed.

3. "So, how old is your child?" This is question that you would ask any parent of a "typical" child and is completely and totally welcome. We want you to be interested in our children, especially with questions that you'd ask your friends/relatives/strangers who have "typical" children.

4. "Your child is an inspiration." I think that parents of children with special needs don't hear this one often enough. Our children do have to overcome obstacles that "typical" children grasp easily and/or at a much earlier age, so it's nice to hear that our children inspire you to be a better person and to try harder and not to take your abilities for granted.

This is one of Thatcher's most recent works of art, and quite frankly, it is inspiring. 

5. "Hey, have you ever heard of this program called "*Something that could potentially help your child*"? This is a great one because as parents of children with special needs, we are always looking for resources of which we were not already aware. But be aware, that this is only okay if you are not giving me medical advice (unless you are a medical professional) and are not trying to pressure me into trying something that most likely will not be useful in my child's case. For instance, I'd never heard of a program in my state that is for early intervention before the age of 3, but was glad when a relative told me about it, even though it was a bit too late for my son. I was, however, able to pass this information along to other parents of children with special needs.

6. "Is there anything I can do to help?" This is one that I've heard numerous parents of children with special needs say they'd like to hear, but have never actually heard it myself. I know that my friends and relatives are concerned and they try their best to help, but I've never actually been asked, specifically, what a person can do to help. I've thanked my friends and relatives for all the help they do provide, but feel odd asking for help (even if I desperately need it at some points) without being asked if there is something to do. Why? Because if you don't ask me, I feel like I'm burdening you, even if I'm not and it's truly something you want to and would be willing to do. Perhaps, instead of giving people like me a lecture on us being too emotional about what you say to us, you should pay attention, especially if you are close to me, to when I seem like I'm under extreme pressure and offer to baby-sit, visit, go out to lunch, etc. Offer to do something that will ease the tension of my workload because lets face it, as the parent of a child with a special need I'm extremely busy and worrisome a lot of the time and could definitely use a pick-me-up and a good friend to discuss my concerns and/or vent to about the issues and challenges that my child and I face.

7. And last on my list, but certainly not least, "Hello. How are you?" And "I'm here to listen." Many parents of children with special needs feel isolated. I know that you might be uncomfortable with the things my child is doing, but if we were friends before my son's diagnosis/birth, I still want you to be my friend. I want you to want to understand and want to spend time with my family and me. Now, I will say that I've never had an issue with a friend avoiding me because of my own child, but I have to say, this happens to other people far too often. If you want to understand what we are going through, just ask. Don't avoid us because you are afraid of hurting our feelings because, even if you do accidentally hurt our feelings, we will probably tell you. You will probably learn in the process if you keep an open mind and listen to our concerns.

Disclaimer: In order to write this note, I used a previous note posted by Special Needs Parent Association, mentioned at the beginning of this note as well as the website: http://parentingsquad.com/what-to-say-to-parents-of-children-with-special-needs, but the majority of what is written in this list comes solely from my own personal experiences. Feel free to add to this list of Things To Say as well as share this note.

The Couch of Akward Encounters

It's been a while since I've written and a lot has happened since I've logged on last, some of which I cannot share yet, but something interesting has happened recently that I must get off my chest.

First of all, Thatcher is doing okay and continues to get therapy and support both inside and outside of school. He's currently using a lot of echolia (repeating what he hears on television or what others have said to him) and hand gestures to communicate.

However, that's not the focus that I want to have for this blog post. I might have mentioned it before; I'm not sure, but I am a part time English instructor at a local university. My husband was recently offered a full time position at the same university (he'd already been working here for three years) as an online lecture with one classroom course. As a result, he was able to acquire his own office. He moved out of the office that we shared last semester into a much nicer office that he no longer has to share with anyone. It even has a couch that just came with the office. Naturally, I was jealous of his couch. I can see the appeal that it would have in attracting students who otherwise might not stop by a professors office, even for a mandatory scheduled conference that is part of their grade.

What I didn't realize is how much a couch would attract people who were not my students. I mentioned to a custodian that I had been looking for a couch to put in my office and had even checked with the surplus department, but had no luck. She remembered that she'd seen one in an empty office just a few doors down from mine and helped me commandeer it. It was dusty, stained, and smelled funny, but I didn't care. All of those issues could be fixed and now I had a couch. This semester I am sharing my office with a woman whom I went to graduate school with, so my slightly girly tastes work for her. I decided that I would clean off the dust, spray the couch with Lysol spray to make it smell better, and cover it with a purple blanket that my mother bought me from Mexico. Now the couch looks very lovely in the office I share with my friend. Above it, there is a wall outlet, which I have plugged a wax warmer into. It smells really nice and looks very comfortable, but my friend's students were confused about whether or not they were permitted to sit on the couch, since it appears to be on my side of the office. To mend this issue, I put a laminated sign above it that reads, "All Students Welcome to Sit on Couch." What I didn't realize was that this would attract more than just my friend's and my own students until the day of my first awkward encounter involving the couch.

I was teaching my 8:00 a.m. class and I'm not sure what I said that caused this student to be interested in me, but afterward, I was sitting in my office when a student that I didn't recognize came to my door. I had recently substituted for my husband who had to have surgery (it was minor and he's fine), so I wasn't sure if he was one of my husband's students or one of my friend's students. He turned out to be neither. He happened to be a graduate student (I only teach undergraduates) in the engineering department at the university. He also mentioned that he'd had an internship at NASA. All of this was really fascinating, of course, but the encounter was awkward. The student kept looking in the mirror in my office to make sure that he was reacting appropriately. He appeared to be attempting to make eye contact, but couldn't make his eyes really look at me. It was clear that this student wasn't your typical student. And then he mentioned that he has Autism. I told him that I could tell and he asked how I was able to do so. I then told him about my Autistic son and gestured to the informational sheet that is hanging on my door. He really lacked confidence in his ability to appropriately communicate with me, but I was nice. I knew others had not been in the past. He made that perfectly clear. He showed me some of his work, which I couldn't understand, of course and then he eventually left. I haven't seen him since then.

Another awkward couch encounter happened today while I was sitting in my office eating lunch. This time it was another professor who I've seen around the office building and have said hello to, but hadn't quite had a real conversation with until today. Perhaps the inviting couch lured him in; I'm not sure, though he didn't sit on the couch. He just kept looking at it as we were speaking to each other. He, too, was curious about my son's Autism and as a parent of an Autistic child and someone who is all for advocacy, I am always willing to share my experience with those who are curious. This particular colleague was really interested in the process of getting a diagnosis, so I explained to him that it's a long, drawn out process that is, quite frankly, annoying to say the least.

First, you know that there is a problem. As a parent, you really want quick and easy answers, but there aren't any when it comes to Autism. The first step is to rule out all other possibilities. In this process, my son went through a CAT scan to make sure that there was no pressure on his brain (he has a bit of a flat spot, but there was nothing to worry about), had his hearing tested, and went through genetic testing, which all happened before we were even able to see the developmental specialist face to face who diagnosed my son. Once we were there, there were still more steps to take. The doctor told me that he was looking for a list of about fifteen things that were true for my son and that my son had thirteen items on the list. I knew then that it was Autism, but was told by the doctor that there were still more steps to take. I had to film my son interacting with children that he did know and children that he didn't know. I had to be asked about a thousand questions about my son's odd behaviors and about his verbalization. My son and I saw this doctor three times in person and my son and his father saw him the first time through tele-care (health care provided through a Skype like program for rural areas of our state) before we had a diagnosis. But for me, this piece of paper that said my son was Autistic was a blessing because now I had the means to get my son the services that he needed.

This was all that I and my colleague discussed. So, what is it about this couch? I have to wonder. Perhaps it's the purple blanket. Purple is a calming color. Or perhaps it's the wax warmer in the outlet above it that provides a calming glow. Perhaps it's the scent of Hawaiian flowers that draws these people to my office to sit on the couch, wonder about the couch, and chat. But really, it's a great piece of furniture to have because it's helping me spread Autism awareness and allowing me to let at least one Autistic person know that some people truly can be friends, even if the first encounter is strange and awkward.

An Ever-changing Journey

Here is a blog post that was saved as a draft, but was never actually published. I wrote this sometime in January of 2013.

So, the holidays are finally over, I'm completely finished with school (as in I now have a terminal degree and won't have to go back) and we are still struggling with all of Thatcher's various therapies. First of all, let me explain: Before the holidays, everything was going pretty well. Thatcher had an hour of speech and an hour of OT outside of school a week and was getting community living supports (CLS), but just before the holidays things started falling apart again. First, his CLS worker quit. We were assigned someone new in the same agency. He worked for a few weeks and also quit. So now, we are trying to go through a different agency and still have yet to find a CLS worker, even though my son has been approved for this service.

Thatcher's OT got pregnant and went back to her home state, which is fine, but that left us with a new therapist who believes (and I have to agree with her on this) that Thatcher would be better off in a facility that is better equipped for children (he's currently going to an adult facility).

His speech therapist hasn't changed, but is adding music therapy, which is great for Thatcher once that gets going. Also, his special education teacher left for maternity leave, but is now back at school and he looks forward to seeing her every day.

The problem, though, is that so much of Thatcher's world is changing. Not to mention, I'm working on finding him a new doctor. Why? Because it's troublesome to see a different doctor or nurse practitioner every time we go into the office and have to go through this every time:

Me: Thatcher is having this problem. He's been crying a lot lately, seems to not feel well and I'm not sure what's wrong. This isn't normal, but he has Autism and is non-verbal.

Doctor: Okay, well, let's check Thatcher out and see what's going on.

*Doctor proceeds checking Thatcher and I wait.

Doctor: Has Thatcher been complaining of any pain recently, like a tummy ache or anything?

Me: No. Thatcher has Autism and is non-verbal, therefore, he cannot tell me when things are wrong. I just have to guess.

Thinking in my head: Did I not just say that he has Autism and is non-verbal? Does this doctor not know what non-verbal means?

Doctor: *Looking annoyed because I can't tell her anything. Oh, okay, well I was just wondering if he had mentioned anything to you.

Me: No.

This happens every single time we go to the doctor. Does this happen to other Autism Moms?