Navigating the Abyss of Autism On the Spectrum
My name is James Link. I am 21 years old and was diagnosed with autism spectrum disorder (ASD) twice. My mom wanted these two different diagnoses so we would be better able to plan for my education and future. The diagnostic process was very different both times. My mom suspected that I had autism because she noticed I started to say words and then abruptly stopped speaking. I finally did start speaking again at the age of three and caught up to the others my age over a three-week time frame.
After intense therapy, I have grown past some of the symptoms that I used to have, such as being more sensitive to sound and light. I couldn’t wear new shoes. Clothing tags still bother me. I have always struggled academically. I perseverate on different topics. I have found it difficult to meet new people. I still have a speech problem. However, thanks to Toastmasters, I have been able to be somewhat more social. At this time, I still need to have information repeated a few times, and if we are discussing a topic I really like, I will not let you stop talking about it. I just keep bringing it up again until you try to change the subject. And if we are discussing Lamborghinis—forget it. And I love to write.
I want people to understand four things about me. We are all very different, and it would be nice if the world accepted all of us regardless of difference.
- Not all autistics are alike. We are all individuals, just like everyone else. We have unique differences. We can have a sense of humor, and with a lot of teaching, we can understand some of the nuances of language that people may not think we can get.
- Just because a doctor or specialist says people with autism have certain characteristics, that is not always true for every single person.
- I want people to know that with a lot of work and practice, people like me can still learn. It is not easy, but people who are on the spectrum can live a good life.
- The key difference between me and neurotypical people is a social and communication gap. I think when neurotypical people communicate, I miss a lot of the messages, because I take things very literally. I don’t always understand comments that don’t make sense to me. For example, a dog’s bark is different than tree bark, and if the context is not clear, it may not make sense which type of bark is being talked about.
I thought about these four big ideas as ways to help others understand more about how people with autism think and behave. I hope it helps.
Life on My Own
Currently, I live on my own in an apartment with my two dogs; their names are Trapper and Chloe. They are large white shepherds. They provide me with company, and since I don’t really have human friends, my dogs are much more than pets.
I can tell you that living on my own has been a great experience. A lot of my family members thought I would and should either end up living in a group home or that I should live with my mom forever. With the proper planning and training, individuals with autism can either live on their own or should be able to live with a roommate, especially if the roommate is aware that the person with ASD may have some idiosyncrasies. Again, I bet we are all odd in some ways.
I do not currently date. I sort of went on a date one time with a girl that my mom knew who also had autism. When we finally decided to go out for lunch, the girl also invited her mom and another woman, who was the girl’s ABA therapist. I put on a suit, and my mom took me to the restaurant. It was sort of a group date. The ABA therapist sat with the girl and me at the table and was able to help out the conversation when it got stuck. We mostly talked about Lord of the Rings because the girl was really into that movie. I thought this whole event was very awkward.
I am very close to different shopping centers, where I am able to go and do my shopping needs. I either walk where I need to go or take my bike. Before I shop, I want to know exactly what I am going to buy. I am on a very tight budget, so I plan my meals and I am very careful about how much I spend. I like to cook, and I especially enjoy using my slow cooker. I typically buy food that is on the last day or so of its freshness date, since a lot of it is thrown away anyway. The food is still good and would go to waste if it was left uneaten. I eat a very healthy diet, shop the perimeters of the grocery store, and limit my gluten intake.
I do this all and more with the official diagnosis of ASD. For me, early therapies, lots of lessons from my mom on how to do certain stuff around the house, and high expectations have helped me to be able to do what I need to do. I am very independent. I don’t like other people doing stuff for me if I can do it for myself, and I have a lot of goals and dreams. I am fortunate that my mom was very involved with me to ensure that I learned to be independent.
At the end of 2013, I partially achieved this goal because my mom moved me into my own apartment. My first year living on my own provided me some challenges with smoke detectors and a washing machine that had problems, and I called the maintenance person down and they took care of my issue. It was here that I learned different methods on how to make more complex meals. I learned that if you can read, you can cook, because a lot of cooking is reading. It did take me longer to learn to read, but after I learned, I loved it.
A Day in My Life
In the mornings, I get up and take care of my dogs—feeding them, taking them for a walk, and then coming back home. Afterward, I go online. My social world is an online world. I check my email to see if I have any new writing projects from a Real Estate Marketing company I currently freelance for called SetSchedule. Roy Dekel is the CEO at SetSchedule, and I am thankful that he lets me do this writing. He has been very supportive in providing me with work.
I check my emails throughout the day, or I work on any personal writing projects for my websites. After I get my project completed, I go to the store. I am actively looking for work, which for people with autism is very difficult. According to a recent study by Drexel University, 58 percent of young adults with autism are unemployed (Lam, 2016). Thanks to my mom and stepdad, I moved to Southern California to try to get work. I set up an account on Indeed where I apply for different jobs. I applied for an internship at SetSchedule, which I was hired to do so after Roy learned that I had co-authored a book with my mom. But, I really need to earn more money, because I am extremely reliant on my stepdad financially.
Trying to Get Jobs
I am an expert at pet care and very knowledgeable about pets, and I have tried diligently to get jobs at well-known pet stores, pet supply stores, local grocery stores, and shops at the mall, all locally. I have tried numerous times at well-known department stores, even going in person. Despite being well-qualified to move carts around or retrieve crickets (which I actually raised for all of my lizards), it is a coin toss as to whether they will get back to me or not. I have applied for probably 20 jobs with no luck. Every time I try to get a job and am passed over, I get very upset. I really want to contribute financially to my own living expenses.
My Goals and Aspirations
Ultimately, I want to be a writer and presenter. I have presented at autism conferences in the past, and I really love it. I co-wrote The Abyss of Autism with my mom. I want to pursue this career path because I am one of the few autistic people who is able to communicate my thoughts, goals, and dreams. I think the topics I write about will give other people another perspective on autism, and since I am able to write, I will be able to speak for others without actually talking for them. As of right now, I am actively writing, so that is part of my aspiration taken care of.
Advice for the Newly Diagnosed
It is easy as a parent of a newly diagnosed child or pre-teen to become discouraged because autism is associated with a lot of long-term problems. The diagnosis is hard on everyone. It is hard not to get discouraged. I think that a large part of my success and development into adulthood for me was that my parents didn’t give up, my mom pushed me, and I made good strides in my childhood. Also, focus on academic gains, educational goals, and getting your child proper therapies. When I was growing up everyone wanted me to have friends, and I am just now getting to the point where I am able to talk to others. I think schools focus too much on trying to make autistic kids social. Focus on your child’s educational goals so that your child’s academic future isn’t as limited. Also, your child may be older than the typical age to start doing some things that your child’s peers may do but in the end, it really matters that they do them at all.
Lam, B. (2016, December 28). Why Some Companies Are Trying to Hire More People on the Autism Spectrum. Retrieved February 01, 2017, from https://www.theatlantic.com/business/archive/2016/12/autism-workplace/510959/?utm_campaign=sniply&utm_medium=sniply&utm_source=sniplyAbout
This article was featured in Issue 60 – Sensory Tools For The Future