Guest Blog: A Mother’s Perspective
The diagnosis was a complete surprise for all of us.
My son is now 14 years old. How did we all miss the signs?
CC was diagnosed with ADHD and anxiety disorder when he was 6 years old. He was in first grade. Since then, we have visited several psychiatrists and psychologists. After several years of struggles (with medications, therapists and so on), he was able to thrive in elementary school. By the end of his 5th grade, his Individualized Educational Plan (IEP) was closed (he successfully met all his goals), he was removed from speech therapists (the school counselor said he no longer needed them). Apparently, all the struggles he had during elementary school was just a phase in his life and he was now ready for middle school.
Middle school started and 6th grade was a complete nightmare. The teacher said CC has serious behavioral issues, he consistently showed lack of attention, impulsiveness, did not follow instructions and was easily distracted. After several one-one meetings with his teacher, I requested a new parent-teacher conference but demanded for the school principal and school counselor to also attend. It was a stressful meeting. They said that I was making excuses for him. My son was able to have good grades (academically he was doing great, all A’s). For them, that was proof that his problem was lack of discipline, nothing more. The school made no accommodations for him. They did not agree with me that a new IEP was needed and he was sent to detention class room at least once per week until the end of the semester (but he continued having all A’s).
Because of my job, we moved to a different state. I was not sure how he was going to handle the move (new school, new state, new house, new church, new everything). For my surprise, he loved the new city, he loved his new school, continued to have A’s in all his classes, actively participated on his youth group at church, and he played basketball for the school varsity team. During the rest of his middle school he never had one single behavioral incident.
His new counselor, however, noticed certain things that were not quite right. CC does not have lots of friends, his social skills are not aligned with his chronological age, has an all-absorbing interest in basketball, he is very smart but has a lack of common sense in social settings. The counselor talked to me and asked me if I would consider for my son to be evaluated for autism spectrum disorder (ASD).
CC knew the evaluation was to determine if he had ASD. He was opened for the evaluation but he was not opened for an ASD diagnosed. When, the psychologist told him the outcome of the evaluation, he showed no emotions. On our way back home, he asked me for the diagnose report because he wanted to read it. After he finished reading it, he gave me the report without saying a word. His eyes reflected sadness. I tried to talk with him that night and he did not want to talk. After several days, my husband tried to talk again with CC but he refused. My husband and I were concerned and heartbroken for him.
We decided to get books regarding ASD and teenagers, parenting a child with ASD and themes like that. We felt education was a good first step for us as a family. CC read several books as well. After a week, we tried to talk with him again. We asked how he was doing and what we could do to support him.
He said: “This has been hard but I have made the decision that autism will not define who I am. I am tired of labels. I am not ADHD. I am not Asperger, I am not anxiety. I am just a teenager.” As parents you do not need to do anything different. I just need you to treat me the same as you have treated me all these years. You are the parents that I need you to be already.”
And just like that with his monotonous tone and his express less face, CC simplified for us what the diagnosis means for us as a family.
The ASD diagnosis is a valuable information. It has helps us to better understand him and along with his counselor we now have a plan for therapists and interventions. Our main goal is for CC to have the social skills he will need for high school. When we reach that goal, we will create new ones.
CC continues with his teenager life the best way that he could right now. He will finish 8th grade with a GPA of 4.0. He is looking forward for high school. He loves playing basketball and is currently playing for a summer league club. He prefers the term Asperger rather than autism. Therefore, we all use the term he is more comfortable with.
We continue to support him every day. We have some good days, some bad days and in between. This is an ongoing educational process for all of us.
For the question how did we all miss the signs, I honestly have no answer. The road for an accurate diagnosis was not smooth. Now, looking back, ASD diagnosis for my son makes so much sense. When I became aware my son has ASD, I cried and was upset with myself. After 14 years, it seems that I barely knew my own son. I felt like I failed him for not knowing.
But after my own process of acceptance, I decided to forgive myself. I am moving forward. I continue advocating for my son and I am happy to do life with CC and the rest of my family.