Thursday, October 3, 2019

About Autism

      I have been asking for post ideas and the other day I got a really excellent one from my friend Darleen. Darleen said "could you perhaps post about how others can/should interact with Travis? My knowledge of autism is very limited, and I am guessing that's the same for many others. About all I know is that many do not like eye contact, being touched, etc, but it varies immensely from person to person." Darleen is absolutely correct. Because if you have met one person with autism, you have met ONE person with autism. That is one of the first things I learned. So to try to answer the question fully, I will talk about autism in general and Travis specifically. 
     Travis likes people. A lot. I'm sure he doesn't like all people, who does? But he does like to interact with people. He is not always great at it, but he tries. He also doesn't mind spending time alone. Which is very typical for a teenager. 
     I guess first we should start with what autism is. It is a communication disorder, which actually can mean a variety of things. For Travis it seems to be mostly a lack of words. He literally doesn't have the words to communicate what he wants a lot of the time. I have become well versed in non-verbal communication, both through training and a lot of practice. I can often, but not always, figure out what Travis wants. Since autism is a spectrum there are varying degrees of severity. I am not as up-to-date on terminology as I once was (I hear they are numbering autism now...) so I can only say that Travis has "classic" autism, which whatever the number, is the most severe. In his medical chart it says he is non-verbal. The nurse practitioner who saw him recently said she would not call him that. I wouldn't either. Travis considers himself a verbal communicator. For a couple of years now we have been working (again) on trying to teach him to use an augmentative communication device to give him more words. So far he just types the words into the talker, has it say the sentence, and then he says it out loud. The school keeps trying to teach him to use the talker. I keep trying to give him more words verbally. Both things should help him have more communication. Anyway, the other end of the spectrum, before they renamed things, was aspergers. People with aspergers more often than not had full and incredibly intelligent speech and some pretty noticeable social skills deficiencies. There is a lot more to it, but that is the super stripped down version. Basically it's at the other end of the spectrum from classic autism. I think in some ways things are easier for Travis. He doesn't have a lot of words so people try harder with him. And most people are nice to him.
        A big part of autism is communication issues, as I said. With Travis it's not many words. Often a lack of ability to pick up social cues and pick up on other people's emotions is a huge part of autism. Travis has actually been pretty good at picking up social cues. Years ago when I would serve dinner everyone would start eating when their plate ended up in front of them. By the time I sat down I was often eating alone. So I said that the new rule was everyone's butt had to be in a chair before we started eating. Travis needed one reminder and then he would watch to see if everyone was sitting before he would start. 
     The lack of picking up on social cues and other people's emotions can cause a lot of issues for people with autism. They may not be able to tell when someone is being sarcastic. They also may not be able to tell if someone is being mean, or trying to trick them into something. People might find them annoying because people on the autism spectrum are usually incredibly truthful and can also be less than tactful. Life is hard if you are different than the majority of the people around you. People with autism have to work really hard sometimes to "fit in" and it can be exhausting. Often they have learned a bunch of rules that they follow. Rules are very important. For example, Travis has learned when someone says hi to him, to say hi back. He also gives a little wave. I happen to love it. I am still waiting for him to say hi first. 
     Another thing I have learned is there are people who say that you should NEVER say someone is autistic, but is a person with autism. There are also other people who say that saying a person with autism is wrong and it's someone who is autistic. No matter which way you say it, you will be wrong to someone. I have used both. No, Travis is not his autism, it is a part of him. So is his cool long hair and his amazing smile. I have also at times described him by his long hair (did it today in school...).  I have said my son has autism and my son is autistic. Basically, I can't give you the correct things to say because everyone has a different idea of what is correct. My recommendation is that if you are good at picking up social cues, try to see what the preference is of the person you are talking to. You might slip once in awhile, it happens. We are all just human. 
     So now that you have the super, miniscule, incredibly basic overview of autism I will start to answer the question a bit more specifically. Though I will continue to talk about autism in general. First thing, people with autism are people. Everyone of them is different, but in general most of them want what we all want. We want to be accepted for who we are. We want to have friends and be able to hang out and do fun things. 
Travis and his para at Open House
     Often a part of autism, and sometimes a big part, is stimming. Which is short-hand for self-stimulation (and no that is not dirty). What happens with autism is the brain is different than a typical brain. They have done studies, it's true. No one has yet been able to pinpoint exactly what causes autism, but they can definitely see the differences in brain scans. Anyway, stimming comes in as many forms as there are people with autism. Some really common ones are finger flicking and hand flapping. Travis does both of those things as well as toe-walking and other things. He has looked at things out of the sides of his eyes but he has no issues with eye contact (unless he's in trouble and then all of a sudden he doesn't want to look me in the eye) but a lot of people with autism really do have issues with eye contact. They are not being rude if they look at your mouth or you ear (or away) while you are talking, it can actually be physically painful for some people to make eye contact. Sometimes people on the spectrum had issues with a light touch or certain fabrics. It can be just incredibly annoying or very painful even. 
     Sensory overload is very real. Imagine living in a world where you couldn't block out the background noises. Right now I am sitting at my kitchen table and if I try I can think of all the sensory stuff around me. There are crickets, because it's night, and I can hear whatever Travis is watching on the computer next to me even with headphones, across the room Ethan is typing and sometimes his chair creaks when he moves. The placemat under the Chromebook is super irritating to my wrists because it's a weird plastic weave. I'm a bit thirsty and now Ethan's Facebook messenger just dinged and my neighbors are driving by with their music turned up way too loud  and the light in my kitchen is not bright but it's sort of harsh and a dog is barking...
       Do you get it? I had to actually concentrate on all those separate things because while I am writing a post I block out all the background. I am really good at it. Sometimes (often) Travis is noisy. Sometimes it's just a sort of quiet repetitive group of sounds that a lot of people say is really soothing. I don't usually hear it. It is part of my background noise so I often only notice it when it's gone. But people on the spectrum are constantly bombarded with ALL the things that most of us can block out. So then you get sensory overload. And then maybe the autistic person needs to be alone, or needs some other type of sensory input. Like hand flapping, or finger snapping, maybe taking a walk, or a tight hug. Deep pressure is often quite helpful. Especially if the person with autism can control the pressure. 
          Basically I feel the best way to approach Travis, or anyone with autism, is to treat them like a person first. Maybe if you meet someone, and they seem a bit odd, they might be on the spectrum. Or in the model horse hobby. Or both. Maybe that person may be trying super hard to connect and they just are not quite sure how to do it. Just try a bit harder. Be friendly, say hi, maybe ask a question or two. If it's Travis, you may not get an answer. Or he might answer Frathalding (which is what he says when he doesn't know the name of something. And Spellcheck thinks Frathalding is a word!). Travis really likes people. Let me correct myself, Travis really likes adults. He has never had a lot of interest in kids. He watches for them when they are around, I have told him to watch out for the little ones, and he does, but he prefers to hang out with adults. He wants to be part of things. 
      No one has to do anything special in relation to Travis. If you want to talk to him I am sure he would love that. It can be hard work. A "conversation" with him is often asking questions and maybe getting an answer. Or him saying something and asking you to repeat it. At horse shows he is often watching a video, ask him what he's watching. He always has an action figure or two with him, ask him what guys he has with him. Travis has been trying incredibly hard to communicate. I can see it and I keep trying to help him. I appreciate everyone who I know who also tries to help. Oh, and when you see him maybe tell him your name again. If he doesn't see you he might not remember your name. Though he probably recognizes you. Also, if Travis likes you, he may want hugs, or he might sort of hang on your arm, lean against you while sitting next to you, ect. If you are comfortable with that, it's totally fine! If you are not, or only want a quick hug, tell him "OK, that's enough" or "all done" or something along those lines. Travis can't tell if you are uncomfortable, but he is polite and will respect it if you ask him to stop hugging you. 
      I am not sure if I have really answered the question or not. But in general, treat Travis how you would want to be treated. He doesn't have a lot of words and he makes a ton of weird noises and sometimes does weird things, but he is sweet and kind and loves people. He is respectful of other people's property and has never touched anything that is not his (other than doors. He has a compulsion to see what is behind closed doors, including cabinet doors). He is great at sharing and if you ask him for something that is his, he will likely let you hold it. For a second. The other day he let me play with some of his toys. I guess the only other thing I can think of is to remember that Travis is an adult. He's not a small child (obviously) and he doesn't lack for intelligence, just words. If you don't want to talk to him, you don't have to, he probably won't mind. If you do want to talk to him he will probably enjoy it. 
      People with autism are people. Everyone of them is different, but in general most of them want what we all want. We want to be accepted for who we are. We want to have friends and be able to hang out and do fun things. We don't want to be judged on what we might do or from things that we did forever ago. We just want to do our best in life, make some friends and have some fun as well. Please let me know if this didn't make sense or if it sparked any other specific questions. I tried to condense 17 years of studying autism, and my whole life with Travis, in one smallish post. 


ShamrockFarmsInc. said...
This comment has been removed by the author.
ShamrockFarmsInc. said...

EXCELLENTLY written, Anne! You captured it perfectly and offered great suggestions. Every individual on the spectrum is a unique person dealing with varying degrees of sensitivities but deserves respect and understanding! Travis is an AWESOME young man and I hope to meet both of you some day. I also think my newly finished foal might have to have Frathalding in the name.

pawprint said...

I like what you said about all of us just wanting to have friends and do cool things. Reminds me so much of what I once said when a non-horsey friend asked me what horses really like to do when left alone. I said that they just want to hang out and eat with their friends, and she replied "Don't we all?"

Darleen said...

Yes, you answered all of my questions. Now I have an idea of how to interact with him. Now I know that I won't make him uncomfortable saying "Hi" and whatnot. Thank you! <3

DrSteggy said...

Thank you for this post. I am never quite sure how I should act around Travis but I really try to be understanding of others and accept them as they are. I have learned some things here the next time I see him.

Brenda said...

Thank you for posting this. I've never really been exposed to someone with autism where it was obvious to me they were on the spectrum, but they are all kids. A lot of the things you mentioned I actually see in myself sometimes and I often wonder if I might be on the spectrum, although probably at the lower end, more towards Asperger's.

I have a question about Travis' hair. Is it long by his choice or is it because of his autism? I've heard where some kids with it can't stand to have their hair cut.

Field of Dolls Studio said...

Brenda, Travis has long hair because he chose it. Years ago he decided he wanted long hair "like Daddy" and now we have to force him into getting a trim. And only my friend Tracy is allowed to cut it.

GJ Berg said...

Golden rule is always a good starting point in interpersonal interaction.

Brenda said...

Thank you, Anne. :)

Teresa B said...

Thank you Anne. I have several friends with autistic sons and having a window into their lives is excellent. You are an excellent Mom and I hope to meet Travis some day!

Anonymous said...

Anne,thank you so much for posting this! I have to be honest and admit that sometimes I have avoided interacting with people who have Autism/etc., because I am unsure how to do it properly. I myself can be shy and I feel awkward interacting with people in general, which doesn't help. In fact, I have been showing model horses in Region 10 for over 20 years and I don't think I have ever had a conversation with you- or half the other Region x'ers- which is crazy because I LOVE your work! I will be sure to say hi to Travis(and you!)the next time I show.
Thanks again, Anne!!!!
Kristine Gardner

Anonymous said...

as someone on the autistic spectrum(very verbal but low social) this was such a wonderful post to read. Thank you so much for putting this information out there and being such a great parent to Travis!