Expectations, Needs, and Problem Behavior

I have been thinking a lot lately about my childhood. One thing I realized is that I didn’t know how to explain my needs so that someone could help with them. It wasn’t until I was on my own at a university that I could finally focus on and address my own needs.

I bought myself clothes that felt soft and made me more comfortable, so that I could handle sitting still more easily. I bought ear plugs that I used in classes when the lecture was too loud. I never had super bright classrooms in college, but I could have easily bought transition lenses and no one would have said anything about me wearing “sunglasses” in class. Now, I often use the night view on my rearview mirror because headlights are too bright for me. I also have tinted windows on my car that help with brightness during the day. I carried snacks with me to eat during class or before or after to help calm me down. I still have a car full of snacks for this.

The thing I realized is that adults expect so much of children and teenagers. If you don’t meet the expectations, you are said to be acting out, when in reality you are simply being yourself. I remember one time in high school when I got in trouble for taking notes about what the teacher was saying because I did not know how to defend myself when she accused me of not paying attention. There are many stories I can tell like that. I did not know how to communicate my thoughts or needs or desires, so I ended up getting in trouble because adults did not understand. But how can you possibly have your needs met when everything is stacked against you?

So I endured elementary school and middle school and high school, until I could finally address some of my needs in college. And this is what we require all our children to do! We require them to fit the norm, with the pretense that it is preparing them for the real world. In reality, the real world is about enjoying life and finding ways to cope with the less enjoyable parts of life. We may not understand what a child needs, but I think it is important to ask ourselves if a “problem behavior” is really a need that is not being met. Don’t just avoid the problems or force children to ignore them, give them ways to cope. Try to find solutions instead of just seeing the child as the problem.

Voices of Special Needs Blog Hop

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

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Showing What Autism Feels Like

I have been watching “The Good Doctor” recently. It is my favorite show I have ever seen because I relate to so much of what the doctor goes through. I have read online that this show has caused a lot of controversy in the autism community. Some people even refuse to watch the show because they feel that someone with autism should play the main character or be more involved in the filmmaking. Another reason people are opposed to the show is that it only shows a narrow view of autism. It shows the experience of “the autistic savant”, which is not how most people with autism experience the disorder.

I understand these concerns, and I understand the desire to have more people’s experiences shown on television and in movies, but I understand it even more after watching this show. The Good Doctor is everything I ever wanted to show people about my autism but never had the ability to communicate. I encourage everyone close to me to watch the show because it so accurately portrays my thoughts and feelings. I look forward to every episode because it shows all of the things that I cannot show and tells them in a way I could never do. I wish that everyone could have this experience. I wish that everyone could refer their friends or family to a particular character, or even episode of a show, and say that is my experience- that is what it feels like to be me.

I have spent my life trying to hide everything about me that could be considered autistic. I have succeeded in this to the point that even therapists did not believe that I had autism. I remember one particular school counselor in high school that told me I had a hard time making friends because of my level of intelligence. She said that I probably did not relate to the other students that had lower IQ levels than me, which was interesting because she did not even believe me when I told her my IQ level and said it was probably 40 points lower than I stated. Anyway, the point is that I am very good at hiding my autism, and my intelligence helps me to do that.

Sometimes, though, I would like people close to me to understand what I go through. Even though I do not like to “be autistic”, I would like my friends and family to see how hard certain things are for me. However, I have trained myself to not show autistic traits, and I cannot force myself to show my feelings, even to the people I trust the most. The only time that you can tell I have autism is when I have a mental breakdown, which makes it too late to explain my feelings and rarely happens around other people.

I understand that not everyone with autism is a savant or a genius or relates to Dr. Shawn Murphy in “The Good Doctor”, but it is important to have shows like this. It is important to show someone’s experience. Even if it may not be the experiences of the majority of people with a disorder, it is a step towards explaining the unexplainable. It is a way for someone to understand the experiences of another. I hope that they make a lot more shows like this. I hope that they make more shows that try to exemplify the experience of a particular group of people. This show has meant so much to me over the past few months. It has been a source of comfort and commiseration. I hope everyone is able to experience that someday.

Best Friends

I was feeling lonely a few days ago because none of the things I was trying to do to spend time with people were working. I had invited people to a conference, movie night, game night, I even organized a committee meeting at church, but no one came to any of it. And I found myself in a lonely and vulnerable spot because I desperately need people, but I am terrible at figuring out how to spend time with them.

In my lowest moment of complete desperation, I got a message from someone thanking me for something I did for them. I broke down because I felt like I was doing everything I could, but I was still alone. And then, after a while, I felt the gentle reassurance that I was doing okay. I mean, I don’t have all the friends I want, and I wish I could spend more time with the friends I do have, but I have the friends I need.

When I was a kid, I prayed every day for a best friend, any friend. I prayed that someone would see me and like me and want to spend time with me. And I got some friends over the years. I only saw them at school or church or things like that, but it was something. And finally, at the age of 20, I got a friend that I could count on, that I felt like loved me, that I felt like wanted to be around me, and that I felt I wouldn’t ruin our friendship with my problems.

It was pretty amazing to feel loved, wanted, needed, important. For the first time since I was a little child, I felt whole. And then I became friends with the most wonderful person. And it was like every bad thing that ever happened to me was okay. I looked back at my life and saw hope in places I had previously seen pain. And it was life changing to feel safe with someone, to trust them with myself, to want to tell them everything. My best friend has been everything to me. She has had a healing impact on my life that I could not be more grateful for.

So, that night when I was feeling utterly alone, I remembered the little girl that just wanted one friend, and I thought, I have the most amazing friends I could ever ask for. I still get lonely. My best friends are farther away from me than I would like, but they still love me. I am still wanted, needed, loved, and safe with someone.

I heard about a school that was trying to ban best friends. They said that it was unfair to those who didn’t have a best friend. I grew up all through school with no best friends, with hardly any friends at all. I ate lunch alone and played alone, and when someone did talk to me, it was usually to get help with something. But I would go through that all again for a best friend. I don’t think you can truly ban best friends, but I would never want that for anyone anyway. As someone who knows what it is like to be jealous of other people’s friendships, I plead with you to never try to prevent a friendship. Teach inclusion, teach children that they do not have to only have one friend, teach children to make best friends with everyone, but don’t prevent that special bond with someone.

Having a best friend has changed my life. With each best friend I had, I became a little less broken, less lonely, less scared, more confident, more secure, more at peace. I think I will probably always have lonely moments. As an extrovert with autism, I simply do not have the capacity to create the friendships I want and participate in the amount of social activities I need to feel completely fulfilled, but I have the relationships I need. I have the friends I need to get through the lonely moments, and that is enough.

Autistic Person vs. Person with Autism Follow-up

I wrote this post about 3 years ago, but never posted it because I was still unsure of how I felt about everything. However, after my last post, I feel this post will bring more understanding to my point of view.

I have never understood the whole debate between whether we should refer to someone that has been diagnosed with autism as an autistic person or a person with autism. Who decided that saying someone is autistic is an insult? Who decided that we lose value based on how we are labeled? Who decided that the order in which we say something connotes the importance of each part of the phrase? And ultimately, who decided that the order of words determines whether we are people first or disabilities first? Who decided that who we are has to be ordered?

To me the debate is completely unnecessary and detracts from life as a whole. If we can’t even say a sentence without someone arguing about the way we phrase something, how can we possibly hope to have a wholesome and healing conversation about autism and what it really means?

Autism is a noun; autistic is the adjective of that noun. Why does this have to mean anything other than that? Why do people even talk about person first language? We are all people. Who says that saying we have a disability detracts from our value as people? Who says that saying we are autistic people means that we are less than saying we are people with autism?

And in reality maybe we should be asking, what makes autism less than the rest of the world? Why is autism considered less, not as valuable, demeaning? Autism is a disorder. But this does not make someone with autism of less worth than someone without autism. Is a blind person less than someone with sight? You who see the world differently, does that mean my world is of less quality than yours? Perhaps I could show you things in your world that you never even knew existed. Perhaps my world is of no less quality than yours. Maybe it is just different.

And that is what we need to realize. Autism is not less. Autism is not person first or disability first. Autism is not an insult or a lower standard of living. Autism is a difference. Autism is the reality of a world that the rest of the world may never know.

And it is okay to be different.

Autistic Person vs. Person with Autism

There is a great debate in the autism community about how to refer to someone that has been diagnosed with autism. In general, it is usually parents or individuals who do not have autism that advocate for the terms “person with autism.” It is usually adults or teens living with autism that prefer the term “autistic.” I have a different perspective than most on this subject. For me, the terms are both equally applicable, but not equal in meaning. Saying that a person has autism is not the same as saying that person is autistic.

Autism for me is a thing. It is an abstraction. It is a label that is meaningless and insignificant until you apply a meaning to it. I consider myself to be a person with autism, not an autistic person. I have been diagnosed with autism, but I have not and generally do not allow myself to be autistic. You see, to be autistic is to be part of a community that lives differently. Being autistic is embracing the differences that come with autism and learning to live those differences rather than hide them.

To show you what I mean by this, I will give two examples. The first is a child who is born deaf. If that child is born into a family that is aware of and embraces the deaf community, the child will learn sign language. They will learn to communicate using their differences and to embrace the world created by their differences. On the other hand, a child born to parents that are completely unaware of what the deaf community has to offer may opt for cochlear implants, may teach their child to read lips, may communicate with their child through writing rather than words, or do other things to help the child live life despite their differences. One approach teaches the child what is possible because of their differences. The other approach teaches the child what is not possible because of their differences.

Another example that may be applicable to more people is terms used for athletics. Someone who plays sports is called an athlete. Someone who places an importance on sports so that it becomes part of their life is athletic. I enjoy sports. I play them when I can and have played on teams before. However, I would not say I’m athletic. I may have an athletic build, but I am not athletic in how I live my life. Likewise, I have autism, but I am not autistic in how I live my life.

I admire people who can be autistic. I also admire people who have autism, but are not autistic. One way of living is not necessarily better than another. It is simply different. However, in saying that, I need to make a point that I believe we should be more accepting of autistic people. The general public tends to admire people with autism, the people that pass for “normal” and do not show autistic traits. We say that they learned to control it, that they overcame this obstacle, that they faced opposition and did not let it stop them. While this is all true, it does not make the autistic person less valuable. They have learned to embrace what others fail to even acknowledge. They have learned to be themselves even if it doesn’t look like the people around them.

Honestly, I do not want to be autistic. I don’t think I could face that pressure. I have always wanted to be “like everybody else.” I pride myself on my ability to blend in. I cling to my sense of belonging. Maybe someday I can be autistic, but for now, I am simply a person with autism, and that is okay.

For the Love of Autism

I love looking at pictures of best friends. They come in all different shapes and sizes. Some look alike and some couldn’t be more different. But the amazing thing is that somehow, someway, two people saw the best in each other and decided it was worth sticking around for.

I’m so grateful for my best friends over the years. My first best friend in kindergarten didn’t last long, but she gave me something to aspire to. My next best friend in middle school really didn’t need me. She was more popular than I could ever hope to be, but I loved her because she saw me for who I was. She saw the good in me.

In college, I felt like I made my first real best friends. The kind that wanted to spend time with me simply because they enjoyed my presence. Unfortunately, with all of these best friends from elementary school to college, situations change and I didn’t know how to keep a friendship outside of situational happenstance.

At 20 years old, I made my first friendship that really lasted outside of school or work or church. She’s been my best friend for about the last 7 years.

Last year, I made another friendship. I didn’t really think that it could get better than it was. I didn’t think that God would send me another friend because having one best friend was all that I ever hoped or dreamed of. But I am so grateful for our friendship. This past year was one of the hardest and best of my life. I didn’t know how much I needed my friend until I had her. And now I can’t imagine my life without her.

I never really knew what it was like to love someone so much that when they’re not around, it feels like a part of you is missing. I didn’t fully understand the feeling of missing someone until I had my best friends.

There is a connection in friendship that is like a bonding of your heart to theirs. It’s not that I didn’t feel that with my family, it’s just that with my family that bonding felt more like a computer network. We could be far away from each other, but we were still so connected that I didn’t ever feel a separation. I feel the same way with my best friend of over 7 years. But with newer friends, that bond feels more like a piece of gum. You can be apart for so long and still feel connected, but eventually that gum strains and breaks, and it takes a piece of you with it. You can reconnect it and get it back, but sometimes the person just never comes back into your life.

Some people think that people with autism don’t understand love, that we don’t value the people around us. It’s not true. I remember everyone from Kindergarten to now. I remember everyone who was kind to me, who talked to me. I feel love. Too much.

It’s just that I don’t know how to express it. I don’t know how to let you know that I like being your friend or spending time with you. It’s not that I feel like I’m better than you or that I’m indifferent. I just don’t know how to navigate the social skills to tell you what you mean to me. But I love you and miss you more than you’ll ever know. And no matter how small, you took a piece of me with you and I will forever miss that.

I know it’s hard for you not to hear I love you. I know it’s hard for you to feel like we ignore you or don’t appreciate you. I can’t speak for every autistic person in the world, but I can tell you that no one could love you more than I love my friends and family. Yes, we love. Sometimes we just don’t know how to tell you how much we love.

Autism Employment Forum

I have been thinking recently about the job experiences I have had as a person with autism in the workplace. There were a lot of things I didn’t understand that would have been helpful to know back then.

So I started researching support for working adults with autism. There isn’t really anything online. There are links to sites that will set you up with a job coach or employment specialist, and there are a lot of links about hiring someone with autism. But what if you have a stable job as a person on the autism spectrum? Or what if you are fully capable of finding your own job, but this is your first job and you have no idea what your rights are or what to do in certain situations? Where do you learn the things that no one really tells you about working and having/ keeping a job?

I am contemplating making a forum for working adults with autism, or for someone between jobs, or just entering the job field. I’ll answer questions I’ve had and initiate discussions about general employment practices or questions.

It will be a place where we can address topics such as: how do I know if I need accommodations? If I do need accommodations, how do I access them? Where can I go to get help? What are my rights? What do I do when I need a break but management isn’t readily available? Should I tell people I have autism? How do I quit my job? How do I ask for a raise? How do I ask for time off? How do I learn the rules and policies so I don’t get in trouble for breaking them? What can I do if I get in trouble with my supervisor or manager?

But before I go through the trouble of making this forum or discussion group, I need to know if there is interest in such a group, and if there is interest, I need help spreading the word.

That’s where you come in. If you would be interested, like or comment on this post. If you know someone that may be interested, share this post. If you have any input or suggestions, let me know.

If there is sufficient interest, I’ll get started on making a group like this. Thank you for your help!