'Through Our Eyes - Living with Asperger's' (Documentary)

4:47AM Aug 26, 2021

Speakers:

Keywords:

people

asperger

neurotypical

helped

katie

world

spectrum

alyssa

friends

social

kids

environment

life

hear

autism spectrum disorder

repetitive behaviors

head

anxious

overwhelmed

thought

I'm different from other people. But in spite of that I've adapted well. I'm one of those athletes who've learned how to socialize, make friends and blend in. I still can't socialize as much as I'd like to and I miss out on a lot. I have to take it easy to preserve my energy. And I can't even go out in public sometimes because I'm very vulnerable to sensory overload. I often have a hard time understanding other people because how I experienced the world is different. I may still be human, but sometimes I feel like I'm from another planet.

It's been agreed that a lot of the main features of Asperger's would include sensory issues, social deficits, obsessive interests, and repetitive behaviors. With the sensory issues, our senses tend to be heightened. So things like lights, sounds, textures of food, certain fabric and clothing can be overwhelming to us. As for the social issues, because of the sensory problems, it makes it hard for us to read nonverbal cues and body language, it's just hard to pay attention to that when you're already so overwhelmed with other things. As for obsessive interests, a lot of espies tend to be very focused while engaging with what we're interested in. And repetitive behaviors might appear as doing things over and over or fidgeting a lot. And a lot of these seem to come about as a way to cope with the outside world. I actually know a lot of people on the autism spectrum, many of them are very good friends of mine. You know, I thought because I know all these people, you know, maybe maybe I should ask them about their lives and and see how they all differ from one another and how we all can relate as well as as bees. The first aspi I talked to was my friend Katie. I had met Katie through my four H club when we were both homeschooled and she's been one of my best friends ever since.

Before I knew what I was dealing with, that I had Asperger's. I thought I was the modern equivalent of the village idiot. I thought it was me I thought I was something wrong with the world. Once I found out that I had Asperger's, as well as a few other learning disabilities made me realize maybe I wasn't screwed up. It was just the fact that my brain was wired a little differently and people just had to deal with it.

Most of my Asperger's symptoms are sensory related. So I'm really sensitive to fluorescent lights and bass from speakers, certain types of voices and tones of voices. So one of Katie's Asperger's symptoms that was the most noticeable to me was her sensitivity to sound.

So that was that was that was pretty big. That was a pretty bad one. That's probably why I don't remember most of it. It drove me crazy quite a lot. I couldn't ignore anything. Everything was right there right in front of me. I could not tell my brain just shut off anything out here clocks I'd hear flies. I'd hear people screeching little pencil on paper, things clattering on the floor or that's just my experience from a classroom. Which is why I was so So happy to be homeschooled. It's, in some cases I could say literally saved my life. There are many things that I worked on to the point that I don't notice them half the time, or majority of the time. And thank God, that's one of them.

I've always had a hard time fitting into the church communities. But it was mainly because of my sensory issues. You know, because I was so overwhelmed with just being there. It made it even harder for me to attempt to connect with people. As for my friend, Katie, she even had a harder time. And I asked her about it and made it made me realize that a lot of us as babies deal with the same kind of thing we go to places like even church where it's supposed to feel safe and welcoming.

I very much enjoy going to church hearing the sermons. Praise, I love it. Only problem was, well, I said, I like praise. But that's where my major problem came in. It doesn't necessarily have to be loud, it doesn't have particular, there's a lot of bass. It's hard to describe what it is. But it's somehow just get in your head a won't let up. To ame churches out there, I know you're doing your best to give a wonderful praise experience. But if the person is in pain from the fact that they're listening to your praise, Music, please stop. Turn it down. You don't have to have it at level 11 all the time.

I also do deal with some of the social issues, I do have a hard time reading people. I cannot stand small talk because I really want to get to know people and I do not really have a lot of practice with getting past the small talk stage. Though my social skills haven't always been the greatest. I've worked to improve them enough to seem quote unquote, normal. The way I act in public and even in this film is a result of a lot of practice, because that does not come naturally. Even for this documentary, I still had to interact with people. If I wanted to take this journey and to do it well, I had to put myself out there and get to know more people. One person I decided to meet with was Patti bohem, the executive vice president of little friend Center for Autism. She explained a lot about the Asperger's symptoms, including social issues.

When we get into social communication, some of it is we have issues where people are very concrete in their thinking. So they take things really literally and it's hard for them to think about another person's perspective. So a lot of times it's difficult for them to understand things socially because it's so hard to understand what somebody else might be thinking.

My Asperger's would include inability to discern facial expressions situations. See when someone who's clearly annoyed with me or clearly wanting to help me, but I'm not helping.

After I learned that Katie had Asperger's, I felt like I could relate to her even more than I already did. It's nice knowing that someone else deals with the same uncommon struggles that I do. Aside from Katie, I had asked me friends and other places to like my friend met who I met on an aspie support group on Facebook, rock, paper, scissors. Matt lived only a few states away so we decided to meet up in person so I can get to know him better. And to also ask him about his experiences with Asperger's.

I was pretty happy about my diagnosis. Really. For me, it was kind of this realization that yes, I'm different. But there's a reason for me being different. For me, Asperger's has always been mostly the social issue. I never fit in as a kid got made fun of a lot. got picked on. Well, I grew up I didn't know anybody else with Asperger's. So I kind of felt like an outcast. So I learned to mimic neurotypical people. So I can at least blend in so I wouldn't be I wouldn't stick out as much. A lot of people With Asperger syndrome, empathy tends to be sort of an issue. And I guess for me it was. But basically, like other aspects, I've had to use my detective skills in order to watch neurotypical people see how they interact with the world. So that way I can appear to be a little more normal. I've read a lot of guides on body language to help fill in the blanks in social situations. And I found out that apparently, sitting, we know with your arms crossed like this, it's to close off, like close yourself off from people show that you're not interested. And I think back on it, and this is probably my favorite way to sit, it's the most comfortable and I had this realization. That's why I don't have a blossoming social life.

My aspie friends, both in person and on the internet weren't the only ones who helped me deal with my Asperger's, I'd have to say that my biggest support would be my mom. She went back to school to study psychology, so she could help people like me and their families. Through her I've met other psychologists like Dr. Walberg, an expert on autism spectrum disorders, I decided to pay a visit to his clinic to ask him more about his perspective on Asperger's.

You know, one of the things that that I've learned in what I do is personality comes first, with all the kids that I see whether they're on the spectrum or not, personality comes first, diagnosis comes second. It's like I tell people, it's like saying everybody with diabetes is this, they behave this way they think this way, their personalities this way, that's not true. It's the same for those on the spectrum. Personality comes first. So I have plenty of kids that I see on the spectrum that are introverted, which is I think some of the stereotypical, you know, wants to sit in his room or her room and play in the computer, you know, doesn't want to interact with people, that's half the kids, I see. The other half are extroverted, the other half want to be around other people want to engage with other people.

One of the most important things to realize is that people have autism, whether it's high functioning autism, or severe autism, and if you have in your brain, you know, what a person with Asperger's would be is I think the most important thing is this is a person, and every person is so different.

So what about three years of age, kids start to really pay attention to other kids around them, that the social environment, I think with, with individuals on the spectrum, if they're overwhelmed by the environment, they're trying to tune it out, they're trying to manage it as opposed to taking it in. So I think they kind of headed in the opposite direction.

It's hard for an aspie to read nonverbal cues and body language, because they're already so busy processing what's around them that it's just hard to pay attention to those things. As a result of that, it might be very hard for them to make friends. conversations can be really awkward, they won't, they wouldn't be sure exactly what to do or say. It's it's hard for them to articulate what they're thinking sometimes or how they're feeling.

Probably the biggest negative effect of Asperger's, for me has been pretty severe bouts of depression. I've gotten better at coping with it over time. But every once while there's a particularly bad one, and I just kind of shut down, I guess would be a good term for it. With my emotions, they're all pretty close together, I can go from happy to sad very quickly. And for just about anything, I'll be happy. And then when I start to think about why I'm happy, I realized that that stimuli that make me happy may not always be there. And then I start to feel sad about that.

So much of what I see with those in the spectrum is rooted A lot of it's rooted in anxiety, because of all the changing things that are going on in the world. The older you get, the more you perceive how much you don't have control of which creates a lot of anger and anxiety and depression. And a lot of kids that I see in young adults that I see, I tell people emotions for it to begin with before therapy with a lot of kids in the spectrum is like a light switch on or off, where I'm more like a dimmer switch takes me a while to get upset. And it also takes me a while to calm down where individuals on the spectrum. Sometimes it's just it's a light switch, which other people don't understand. And I think what starts to develop then is more of the the black and white way of seeing things. So that's an easy way to control the environment itself. Try to make it consistent. So if the sensory world's not making sense, I want other things in my environment to be the same. So it's a it's really a control thing, the more they are overwhelmed and overstimulated, the more they try to control. So they don't want furniture in the house changing, they don't want different routes to school is that that's not fun. So the challenge with the social interaction in the social world is it's always changing. It's always evolving, you never know what's going to happen, what somebody is going to say, how they're going to react, how they're feeling that day. So a lot of times in therapy, what works really well is getting individuals to understand that with the black and white thinking, you can really use that to your advantage. Because it's all or none, I can't be extremely anxious about something and extremely calm at the same time, the body can't do that I can be in the middle. So a little bit anxious, but not not overly anxious. So I try to get them to see a continuum. To break things down. So then there's not such an overreaction to the change. So it doesn't get overwhelming when something doesn't go exactly the way they want it.

One of the things that has really helped me cope with my Asperger's is having a routine and sticking to it. When my schedule is predictable, I have a lot less anxiety. Having consistency, helps me be able to function better with other things like social situations, I would also reward myself when I have been consistently sticking to the routine rewards really helped motivate me. Another thing that's really helped me is trying to stay positive. And I know it sounds kind of cheesy, but I put positivity into my routine. So like I'll have a time to sit down and write all the things that day that were good and awesome.

One thing that's really helped has been meeting Alyssa, because up until that point, I didn't know anybody else with Asperger's. That was my age, Matt is seeing the beam for the first time really shiny.

Since Matt had never been to Illinois before I decided to show him around. We went to Chicago visited some shops and just tongue out. Something about other aspects that interests me is that because our brains are wired differently, most of us make connections in a different way. But just like neurotypicals know to ask, these are the same. So each of us has our own unique thinking patterns. If I were to describe the way I think it would mainly be visually and sequentially. The best comparison would probably be music video, because it is visual, you see images and they're always in a certain sequence. Now Matt is a different story. I believe his thought processes are actually closer to neuro typical than me and Katie's because he thinks more verbally.

I've heard a lot about people on the spectrum, how a lot of them will think with, like pictures or images in their head. But for me, it's more of a verbal thought process. It's like almost like talking to myself in my head, you know about what I need to do, what needs to be done, what hasn't been done that kind of thing. And it's kind of like a GPS, it will like guide me towards an objective. Well as a generality, as these tend to view the world a little differently than neurotypical people, people without Asperger's. So, a lot of times we can come up with alternate solutions to a problem that a neurotypical person may not have thought of. But the same is also true for Auntie's, they may think of a solution that we don't think of. So I think that he kind of takes both sides working together to come up with like a joint solution that times somebody described with me once as an aspie in the neurotypical standing side by side and they hear the beating of hooves on the ground, and the neurotypical person will automatically say, those are horses. And the aspi might say, well, who's to say it's not zebras?

I've heard that massive amounts of imagination is pretty common among creative girls on the spectrum and that's The reason why Katie and I relate so well, we both have these vast in our worlds, but just calling them vast is an understatement.

While my normal thinking tends to be more conversational, my imagination tends to be a bit more visual. I can't remember a day in my life where I wasn't coming up with something. If I had to describe my stories, it has to be like having a TV inside my head. All the stories that I have are like the shows, and they have crossovers constantly in the genres are absolutely endless. A lot of fun. They are pretty much what keep me sane throughout most of my life. When I'm really stressed out, they can either call me down or help me to concentrate. If I just want to clear my mind, I find a story that's the most comforting at the time, and then I just go there and play around. They keep me centered in a way I could imagine not ever having them.

Throughout my life, I've always had a huge imagination. In fact, a lot of times my imagination might seem a little more real than reality, because I'm so engrossed in it a lot. Also, because I'm visual, I can imagine things around me in the actual environment. I've actually been building a sort of inner fantasy world in my head, since I was about 17. I call it veil. It's a really beautiful place.

There's one character in particular, that I picture a lot, his name is Seamus, and he's an angel. And sometimes, by picturing him with me, it helps me get through things that I might be struggling with, like if I'm lonely, or if I'm really anxious during a test, he'll just be there.

Sometimes adolescents with Asperger's have difficulty transitioning from that adolescent period into adulthood. And I believe that parents can play a primary role helping them with that transition.

Although I had known Katie and her family for years, it wasn't until this conversation with Carol that I realized just how much she helped Katie and how far Katie has come to improve her functioning skills.

Once we brought her home, for homeschool in October of third grade, the first year, we really, we just kind of had to save Katie, she was in a very, very difficult emotional time. It was the challenges of the school schedule, the school environment, not being able to learn at the schedule that the other kids were they were getting into a much more third grade, they're getting into a much more testing environment. So she just had amazing anxiety and sadness. I wouldn't say depression, but she really was at that point. So we just we went to museums, we went in adventured. We just did all kinds of stuff for first year, we just kind of continued to expand summer her into opportunities for independence. The library has always been a big thing as she got older, she would print out the map from online, and then she would draw the map. And then we would ride the bike path that we set out for her to get to the library, she would get to the library by herself. And that was a huge thing for her, then she would start going on errands for us. I mean, I paid a ton more for milk at the neighborhood gas station. But it was something that Katie could do for us. And let me tell you, it was helpful to have her run over and get a gallon of milk if we were added something she loved to be a productive service to the family.

So Alyssa went from a really positive middle school experience where the staff and the teachers understood her. And they supported her to a high school experience in a different district that didn't quite know what to do with Alyssa. They didn't quite understand where she fit in socially or academically. And so my husband and I and Alyssa, we weighed our options, and we made the decision to homeschool. And over the course of Alicia's homeschool experience, she was able to be involved in for age, which helped her with her leadership skills. And then she was also involved in a homeschool Co Op. And that really helped her with her social inner actions, there were two notable experiences that really helped elicit gain independence. The first was when she turned 16, she wanted to apply for a job at Target. So both she and I applied for the target positions. And they allowed me to be a job coach for the first several months, which really helped her transition into the work environments. Another notable experience was when Alyssa entered a transition program two years before college, she emerged as a leader among her peers, and it really helped her gain her independence.

Nowadays, I work as a bagger at a grocery store. I find it a lot of fun seeing the different types of people and interacting with them. And my greatest joy in life nowadays, is trying to make people smile. To most people bagging might be okay, yeah, your bag people things in a bag in a grocery bag, big work. For me, it's talking with them. It's not just bagging, it's begging to make them like it. If they want the bag bag a certain way that I bag it that way.

Right now I'm going to small Christian University, and I'm majoring in film studies. I also feel very independent. I have my own dorm room, I do my own cooking and cleaning and shopping. And I really like that because it makes me feel like a responsible adult.

I've always been an honor student academically. I plan on getting a degree in Geological Sciences. I believe that when I took an IQ test it registered somewhere around 129, which would be about a little over one and a half standard deviations above average.

SPS have this ability to do something called hyper focusing where it's basically the same as focusing. But compared to the normal person, it's much more intense, and they focus on very specific things. So when they get interested in something, they are really interested in it like if they like airplanes, they might know everything there is to know about airplanes, or maybe even a certain type of airplane, and how it's built and the history of that airplane, this can actually eventually lead to them having a really great career that they love if they, if there's something that they really like. And that is their job to do that they're gonna do really good at it, they might still struggle with the social environment of having a job, but they'll be good at what they actually do.

With a lot of the kids and young adults, I talked about that you have superpowers, it's just a matter of learning how to harness them, using them to your advantage, you can use them for good, or you can use them for not so good. When you use them for good. It's the sky's the limit. I read another article not long ago, and it said it hypothesize that 90% of the technological inventions we have today come from minds of those that are on the spectrum, which I think is probably true.

I think it's really important for the business world to know that there's many, many people with autism spectrum disorder, they're very capable, you know, just the way that they're wired. They're very, can be very detail oriented, and just really good at finding errors. And I know there's some companies that have really capitalized on that. And they have hired people with austism specifically because of how their brains work. And it's made that much more productive.

If I were to give any advice to an aspie in general, I would say, get to know yourself and your needs, and realize that you do have limitations and try to work around them. Don't be ashamed of them. Get help for them. If you need the help, like if you if you think counseling will help you or maybe a mentor for social skills, accept help, because that's gonna make life a little bit easier. Also embrace your strengths or as Dr. Walberg would say your superpowers because all as a species even though we have deficits, we have superpowers.

If I was giving a message to all the Ashby's it'd be Don't give up, keeps keep trudging forward and find your happy place. If life is getting tough, there is going to get tough and sometimes that means you just got to try and get beat tougher.

Don't love what other people People say bother you. Be proud of who you are and accept yourself for all of your differences than what society thinks is normal. If I were given a choice between having Asperger syndrome and not having it, I would choose to have it hands down because it's not something that I have. It's who I am. It makes me me