For this edition of the Mental Health Blog, in recognition of the month of April, we’re doing something a little different. Because I myself have Autism Spectrum Disorder, I’m going to be providing a little background information about autism and then write about my own personal experiences with it. I hope that my experience can show people an inside perspective on what it is like to have autism and be in therapy. My experience may not be the same as others with autism, so remember to talk to the people with autism in your life to learn their thoughts and feelings.
The Basics of Autism
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that can affect anyone regardless of race, sex, or class.1 Characteristics include difficulty socializing, communication problems, and restrictive and/or repetitive behaviors, which can include interests and activities.1 These behaviors are present from early in development and impact how an individual functions on a daily basis.1 Because autism is a spectrum, level of functioning, skill, and the severity of any symptoms depend on the individual. Because autism can be comorbid with other mental health problems (such as anxiety and ADHD) treatment for these mental health issues may involve therapies like CBT or talk therapy.
According to the CDC, 1/59 US children have autism, and boys are four times more likely to be diagnosed than girls.1 However, this may be because girls are more likely to be social chameleons, and blend in. Girls may also present different symptoms, much like how males and females with ADHD do. 2 Boys tend to have interests and behaviors that are more restrictive and repetitive than girls, and tend to deal with their problems through externalizing them, which make them more visibly stick out.2 Girls are more likely to internalize their problems and present with shyness. We as a society overlook shyness in girls because of how we socialize them from a young age to be calm, quiet, and compliant. Another shy girl won’t cause schoolteachers to stand up and take notice, but a boy actively causing disruptions in class certainly will. So girls tend to be overlooked and go undiagnosed for longer.
My Thoughts About Common Issues
Some people with ASD are okay with the phrases “high functioning” and “low functioning”. Some aren’t, because people have used it to assign them social and societal worth and expectations. Just because someone is “high functioning” doesn’t mean that they aren’t affected by ASD, and “low functioning” people with ASD can still lead fulfilling lives, even if they require more support. We don’t get to choose our special interests or hyper fixations. We can’t choose to make them about our schoolwork or a more “useful” topic. They just happen.
The puzzle piece as a symbol of autism is considered outdated by many people with ASD, I find that many of us prefer the infinity symbol, which represents the autism spectrum and the neurodivergent community. This is because the puzzle piece was championed by Autism Speaks, a group focused on finding a “cure” for autism.
People with autism often struggle with empathy. However, this does not mean we do not feel compassion or concern for others. Empathy is the ability to put yourself in someone else’s shoes and feel what they are feeling.3 Compassion is different, it is the desire to help someone through their suffering and help them feel better.3 Many people with autism have differences with feeling and expressing their emotions, so it can create a communicative misunderstanding between themselves and neurotypicals.
These thoughts are very broad strokes. They may not fit everyone all the time, so if a person you talk with who has ASD has a different preference or experience, you should be considerate of their feelings.
ABA (Applied behavior Analysis) Therapy is one of the most common forms of treatment for ASD. There are different forms of ABA, such as play ABA Therapy, which combines play therapy with the principles of ABA.4 I saw this used with younger children on the spectrum to encourage building the foundations for entering ABA therapy when they are older. In the early days of ABA, the system used punishment and reward as a form of behavioral conditioning, even though rewards were more effective than punishment.4 However, modern ABA has done away with punishment. Instead, rewards are used to encourage the desired outcome.4 For example, using a sticker chart to track the client’s progress as they learn how to tie their shoes by themselves.
Keep in mind that there is a divide in the autistic community about ABA because of previous controversies and the start of ABA as punishment focused. Some of us have had extremely negative experiences. True ABA therapy does not/should not seek to “take away” autism or try to turn someone with autism into a “normal” person. ABA is about learning healthy self-care, anxiety management, independence skills, and communication skills.4 Make sure you seek out this kind of therapy from a reputable provider who listens to your concerns and needs regardless of if you are the client or the parent.4
Social Skills Groups
Group social skills group meetings allow for individuals with ASD to practice the social skills they learn with an individual therapist.5 For example, telling appropriate jokes, learning how to take turns in conversation, and make friends. The goal of these sessions is to promote healthy interaction skills between others and through practice, ease some social anxieties.5 These sessions can be performed in a variety of ways to keep the participants engaged. A study was performed to see if attending a LEGO social skills group improved the skills of adolescents on the autism spectrum.6 The children learned teamwork, socialization, and turn-taking skills. This study saw that this unique therapy was effective outside of the sessions. The most important thing social skills does is provide a social support network and opportunity to make friends.
At a mental health clinic I volunteered at, there was a similar group game to help teach cooperation. Instead of LEGO, the group leader used D&D. The group leader used the NPCs to teach the kids about how to recognize tone of voice and malintent. Group puzzles allowed the kids to learn how to work together, and combat taught turn taking skills. The kids always had a great time, and it was rewarding to see them improve their skills. These game sessions were for the older children (11-13), lasted about 45 minutes, and were held after the lesson portion of the group meeting.
A Reflection of my Personal Experience with Autism as an Autistic Adult
If I touch something with an unappealing texture, I sometimes have to wash my hands to get the texture to go away because I can still feel it even if I’m not touching it anymore. Just a few weeks ago, I rubbed my sock against a stone coaster by accident. The feeling of it dragging against the coaster was so unpleasant that I felt the need to shiver and shake, and I felt the discomfort in my teeth. I also can’t pet my family’s dog without feeling the need to wash my hands after, because he is a Labrador and has natural oils on his coat, and oily textures are one of the things I can’t stand to touch. If I eat something that crunches when it shouldn’t, or the taste is slightly off from what it usually is, I get extremely uncomfortable and often refuse to keep eating that thing, even if I’m super hungry. I refuse to eat or touch anything with a slimy texture, like fruits, particularly canned fruits. In order to work around this, I drink smoothies or eat crispy dried fruits. I’m also sensitive to loud sounds, particularly fire alarms, fire truck sirens, ambulance sirens, and other invasive alert sounds. Flashing lights are uncomfortable as well, they make me feel very nervous.
My routines are really important to me. I like to know how everything is going to happen, at what time, and what comes next. I don’t do well with last minute changes in plans, and some things in my schedule must happen (unless there are unusual extenuating circumstances) or else I feel considerable distress. For example, I must change my sheets every Sunday morning and I must shower every night. If there is a big event coming up that has been on the schedule for months that changes the day before it is supposed to happen, I feel very upset, because the plan I’ve been operating under is no longer there. For example, one time my family was moving, and the movers were supposed to come on a certain day to take away the boxes so we could move out the next day and go see my relatives. However, there was a scheduling error, and they didn’t come. In my mind, everything I knew was destroyed. I thought I wouldn’t be able to see my friends and grandparents, and that it would affect when we were able to move into the new place. Moving is already very stressful for me, and I dislike having strangers in my house, so when I had prepared for people come and no one came, it didn’t make me feel better, because I wasted so much energy preparing for something I didn’t have to.
Special interests are a huge part of ASD. A special interest is an intense focus on a particular topic or activity, and they tie into the restrictive behaviors part of ASD. Almost anything can be a special interest, like animation, video games, math, cars, Disney, animals, and so on. The person knows a lot about the topic, readily engages with it, and may be restrictive when engaging with it. 3 As in, they may not want to do or talk about anything else except the interest. Special interests are not the same as Savant Syndrome, and each individual who has a special interest engages with it in a unique way. If you are not on the spectrum and you have an intense interest or passion in a project, it is not the same as a special interest. My special interests are animation and Dungeons and Dragons. I spend a lot of time engaging with these activities, learning about them, and I know a lot about them.
I dislike making small talk and I struggle making eye contact, especially with strangers. Usually, I look at the person’s whole face, or right between their eyes on the forehead. I sometimes struggle with staring, understanding tone of voice, and taking things literally. When I was younger, I had the tendency of interrupting others in conversation. I still sometimes have problems taking turns, but I’m better at finding the breaks in conversation now. I get uncomfortable talking in groups because it’s harder for me to find the gaps, and there are so many people talking that it can be overwhelming. I am anxious when I meet new people, and I feel like I must be constantly on alert to try and learn their facial expressions and tone of voice to try and tell if they are a nice person or a threat.
Therapy and my Anxious Moments
Before I started my various therapies, I was afraid of cooking in the kitchen, especially with knives, and I was very selective in what I ate. Through exposure therapy methods and a reward system/behavior chart, I learned many skills, and now baking is one of my favorite hobbies. When I was a young teenager, I did ABA therapy to learn how to overcome my driving anxiety and to learn certain social skills that I lacked. I learned more about tone of voice, sarcasm, and how to take turns better in conversation. I also learned coping mechanisms to deal with my anxiety without having a meltdown, and how to stop a panic attack before it started. My experience with APA therapy and traditional therapy were very positive, and I wouldn’t be as happy and healthy as I am today without them. I learned so many important coping mechanisms and how to connect with my feelings, even when I am having an anxious moment.
When I have anxious moments, it can be difficult to listen to logic, regardless of if it is internal logic or external logic given by others. This is because the emotion is so overwhelming that it causes me physiological side effects and blocks my efforts to overturn the negative thoughts. To relieve how strong they are, I will stim with some of my stim objects, such as a set of purple Dungeons and Dragons dice that I roll between my palms, play with a container of lavender scented dough, or rub a silicone bracelet I keep around my wrist. It helps me calm down so I can use the skills I learn in therapy to self-soothe.
For those of you who do not know what stimming is, it is a repeated motion or behavior that is soothing to the individual doing it. Some people have vocal stims and make a particular sound or say a phrase. Some people may have stims that are harmful to themselves, and in those cases it is important to seek treatment to help stop that behavior and replace it with a harmless one. A common misconception is that if a person is stimming, they are not focusing. However, for neurodivergent people, stimming helps us focus and settle down. We may not look like we are paying attention to you (not making eye contact, focusing on our stim object), but we are very likely listening as best we can, and the object helps us do that.
My Diagnosis and Moving Forward
When I was first diagnosed with ASD, I was fifteen years old, and all of a sudden, I felt like I couldn’t have the kind of life I always wanted. Going to college, living on my own, finding a partner and having a family all felt out of reach to me. I was despondent for days on end. Looking back on it now, I was grieving the loss of the life I wanted. I saw it all slip away into the confines of my deepest unattainable dreams. But now, six years later, I am about to graduate with my bachelor’s degree, I live in my own apartment, and I have a healthy and fulfilling relationship with a loving partner. How did I get there?
My parents decided to put on Bones and insisted we all watch together shortly after my diagnosis. Bones, which shares the name of the main character Dr. Temperance “Bones” Brennan, features two autistic coded characters, and most importantly, one of them is female. Many representations of autism in the media are white males. It was so inspiring to see people like myself in positions of respect and power. What comforted me most was that Dr. Brennan was not mercilessly mocked by her peers, such was the case with Sheldon from The Big Bang Theory, and that she had friends and loved ones who treated her well. She also had a loving partner and two children. Even though it wasn’t a perfect show, it was deeply meaningful to me.
Not long after starting the show, I felt a feeling of hope and drive. I wanted to be just like Dr. Brennan. I pushed to succeed in school and get into a good college, and I worked hard to learn the skills I would need to have a job. But most importantly, I learned I wasn’t broken, my brain was just different, and that there were other people out there who were just like me. I didn’t feel alone anymore. I owe all of this to seeing a representation of myself in media. Representation is incredibly powerful. It is so important to be able to turn on the TV or watch a movie and see characters who are reflections of yourself and your struggles. It makes you feel like you are not alone.
If you have ASD or have recently been diagnosed with ASD, remember that there’s nothing wrong with you. You were born like this, nothing you ate and no vaccine you got caused this, regardless of what others may tell you. If you’re also experiencing anxiety or depression, I encourage you to research and consider therapy to help treat those issues. But most importantly, know that you matter and have worth in society, regardless of how your symptoms present.
To learn more about what autism is and how to advocate for yourself and others, as well as more information about ASD check out these sources.
Moody, C. T., & Laugeson, E. A. (2020). Social skills training in autism spectrum Disorder across the lifespan. Psychiatric Clinics of North America, 43(4), 687–699. https://doi.org/10.1016/j.psc.2020.08.006 5
Levy, J., & Dunsmuir, S. (2020). Lego Therapy: Building social skills for adolescents with an autism spectrum disorder. Educational & Child Psychology, 37(1), 58–83.6
This article was written by Caroline Sebren, a senior at the University of South Carolina and current volunteer writer for Carolina Assessment Services, LLC. Caroline is a current Psychology major with a minor in Counselor Education and hopes to pursue work in the future as a Licensed Marriage and Family Therapist.
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