Alex

Written September 2019

by Amy Basso Guy, Alexander’s mom

Alexander is 16 years old, and he has Autism Spectrum Disorder (ASD). This has mainly manifested itself in the areas of communication and social interactions. Alex does not have many of the physical ailments that are often associated with ASD. My husband, who is currently earning a PhD in Health Psychology, could give a much more specific and clinical description than I, but to use a term I hear frequently, Alex is “higher functioning.”

Alexander has a very upbeat, easygoing personality. He has a sense of humor and loves to laugh and make people laugh. He is cheerful most of the time, and whenever he is upset or irritated it is short lived and he is quite forgiving. Alex loves comic books and cartoons such as Hey Arnold, Sponge Bob, Captain Underpants, Teen Titans, and Peanuts (to name a few) and his humor is definitely along those lines. Although we have not had paid television since 2010, he also loves Disney Channel. Alex also has an amazing memory for dates, such as the day and year a person was born, and he is quite organized and creates and follows his own daily schedules, as such he is very reliable. If I ask him to set up the rice cooker by 5:00, I can bank on it being done -- 5:00 on the dot.

Alex is the oldest, his sister (and best friend) Olivia is 14 and his sister Sarah is 9. Alex and Olivia have always had a close relationship. They are 21 months apart, and as toddlers and preschoolers, they were solid playmates. As they have grown older, they have remained quite close. Olivia was about 5 years old when we told her that Alex has Autism—she burst into tears which we interpreted as her concern but turned out to be tears of relief! She thought that the times he seemed to ignore her were personal (as if he were mad at her or annoyed by her) but she then understood that it was a part of his disability. Now that they are teenagers, they spend time together listening to music, working out, or watching movies. She has been the best “intervention” for him, especially in their pre-school years when she pulled him out of his “own world” on a daily basis. Although there were times she has been annoyed or embarrassed by her brother, Olivia says she loves him and knows they will always be close friends.

Alex and Sarah have a more traditional big brother/little sister relationship. They tease and annoy each other, but she relies on him to help her with things such as getting the cereal down off of the high shelf, or tech issues with the iPad, computer etc.  Sarah is less patient with Alex’s communication deficits, often thinking he is being silly “on purpose”, but she is learning about Autism and other disabilities which is helping to increase her understanding. 

All 3 of our kids are close and get along very well. My husband and I talk often about how much more we argued with our own siblings when we were kids. We have wondered if the Autism has played a part in that closeness as Alex is more engaged with his siblings than the typical 16-year-old boy. 

Alexander is honest, funny, family oriented, and trustworthy. In addition to these strengths of character, Alex is quite proficient with technology. It comes naturally to him. He was 3 1/2 the first time he changed the wallpaper on our desktop computer. My husband and I each thought the other had done it. When Alex heard us talking about it, he hopped up to the desk and changed it right back. We all rely on him for tech support!

Alex also draws interesting comics almost daily. He is very organized with times and dates and is super reliable with chores (emptying all the household wastebaskets and putting the can to the curb weekly, cleaning his hamster’s cage, sorting laundry.) Alex is also very determined. He wanted to do well his freshman year, so he spent extra time studying and working on his online assignments every night, with no prompting from us. He wanted to get into better shape, so he spent time every day hanging on the pull up bar building up to a pull up. 

When Alexander was little, he did not talk. The first time I suspected something was not right was when Alex was 2 years old, and we were invited to my friend’s house for her son’s 2nd birthday. All the other 2-year olds were talking, and Alex was not. I spoke to his pediatrician who reassured me that milestones were just averages (sound advice in most cases). By his 3rd birthday, the doctor agreed that Alex needed his hearing tested, but his hearing was fine. 

Autism was not on our radar yet, mainly because Alex was so smiley and cheerful and although he didn’t talk, he engaged with us. He always ran out smiling when Dad arrived home from the office. He would show us his toys and the pictures he drew. When Alex was 4 years old he would echo things we said to him, but he did not speak spontaneously, and that prompted us to take him for an evaluation at Douglas ESD and as a result he started Early Childhood Special Education (ECSE) preschool that fall and started receiving speech services. 

The most significant challenges we have faced are in dealing with the public-school system-both in Roseburg and Winston. I am an elementary teacher, which I thought would make the system easier to navigate as a parent, but it actually made it harder! The “specialists” were often not up to date on the most current research and were sometimes argumentative or did not really want to listen to us.  As both a parent and teacher, I know that inclusion is not always a good answer for kids like Alex—but schools blindly push inclusion. Also, school was often a huge source of stress for Alex; from differing expectations from different adults, to staff’s lack of knowledge of Autism, to the sensory overload that happens each day at school.

There have been some caring, committed teachers and a few bright experiences along the way, however, those have been far overshadowed by negative experiences. There were multiple times when Alex’s IEP was violated or not implemented—sometimes unintentionally, but other times intentionally and repeatedly. We would try to work with the IEP team or the principal towards a solution, but we were met with dishonesty and defensiveness. As a result, we have had to use the public complaint process at the district level, and even file complaints with the state. This caused a great deal of stress for us. Eventually, it got to a point where we knew we needed to withdraw Alex from school in his own best interest and try something different.

With Alex’s sound tech skills and strong written communication skills, we decided to try virtual school with Oregon Connections Academy. This has been an amazing solution for Alex, and we have seen him blossom, thrive and excel since we made that change a few years back. 

Another challenge is “the soft bigotry of low expectations.” People often set their expectations of Alex way too low. This is often out of ignorance vs. meanness, so educating people has been key. 

We also worry because Alex is naive. It adds to his sweet nature, but as he grows up and becomes more independent, we worry about those who may take advantage and we know we have to teach Alex to recognize signs that he is being taken advantage of and to defend himself. 

These challenges, especially with the schools, are what inspired my husband, Robert, to pursue a PhD in Health Psychology. 

When Alex grows up, he wants to work at Dairy Queen. He has been saying that since the 5th grade when someone suggested that the employees probably get ice cream on their lunch break!  Alex has also expressed interest in working as a chef and in working as a cartoonist or illustrator. He is heading into his sophomore year of high school and is taking game design and 2D animation, which may spark a new interest.

My dreams for Alex are to achieve his goals, to marry and start a family, and to find purposeful work which uses his strengths. I also want him to learn how to advocate for himself. I hope he continues to grow in his Catholic faith, and that he will always remain the cheerful, organized, honest and funny person that he is.