Autism, Nick’s Ongoing Journey

By Commissioner Tena Blakey, Nick’s Sister

On one cold rainy night at Hartsfield International Airport, I met my mom, stepfather and baby brother as they were coming out of the International Terminal. I was 25 years old and was/is very excited to be a big sister. You see, they had been in Russia for two weeks for a third time to adopt Nicholas. The rest of my family had never met Nicholas. Nicholas weighed 13 pounds, had a double ear infection, couldn’t rollover, didn’t sit up, and despised being in the prone position at nine months old.

Nick was the perfect baby. He didn’t cry, at all, for any reason. He was fine playing by himself in his crib or on the floor. He would entertain himself for long periods of time. After he was evaluated by Babies Can’t Wait Early Intervention Program it was determined Nick needed Physical Therapy, Occupational Therapy and Speech Therapy. He wasn’t hitting most of the milestones a “typical” baby would.

Fast forward to age five when he was due to start school. Nicholas previously met his PT goals but continued OT and Speech in school. He had a wonderful school experience with caring teachers and administrators. Looking back, there were many signs that in addition to Nicholas’ therapies, there were other areas where he wasn’t “typical.” As a young child, Nick went through phases of obsessions. He would line up his matchbox cars by color. Nick also loved all things fire truck. He would line them up by several categories at the same time. One, they would have to be lined up by tanker or pumper truck, then by ascending numbers, then by size. Nick’s longest obsession that is still true today is with the Titanic and her sister ships. If you want to know anything about these ships, Nick can tell you.

In the third grade, my parents were referred to additional testing at the Marcus Institute of Autism at Emory. The school Psychologist determined Nick to have Autism through routine testing. At Marcus, their testing began. After weeks of driving back and forth from Gainesville, it was determined Nicholas had a diagnosis of Autism and Fetal Alcohol Syndrome. FAS, as it’s known, mirrors Autism in a lot of ways in addition to some physical characteristics.

Nicholas spent time in Special Education classes as well as inclusive classes all throughout his school career. He received a tremendous education and other opportunities throughout school. It is the other parts of being a child and going through school that he missed out on. Nick was never invited to a birthday party, sleepover (besides my house), prom and other activities that revolve around being social. He watched a YouTube video on how to play the Guitar. He taught himself in a couple of weeks. He also taught himself how to play the Ukulele, piano and drums. Once he has an “obsession” he will devote massive amounts of time day and night to mastering it. Nick set a goal when he was in the 9th grade to shoot 1000 half court basketball shots before he graduated. He would get to school early, stay late and even give up lunch since it is a social time for most students. Nick was on the North Hall High School basketball team as a “shooting coach” because he can’t dribble the ball well as this takes more coordination than what he can do. Nick was infamous at school for shooting his perfect 3-point shots as well as his half court shots. I am super proud to say Nick made his goal January 24, 2015. It was his senior night; both of the basketball team coaches had decided they were going to put Nick in the 4th quarter for one play. He went in, the ball was passed to him and he made a basket, and he made his 1000th half-court shot at halftime in front of all the spectators.

Nicholas has many characteristics of someone with an Autism diagnosis. Some of his behaviors mimic traditional defined behaviors. My brother Nick has Autism, but it doesn’t define him, limit his purpose, or hold him back from loving God or from God loving him.

Nick may never live alone without supports, cook a meal, manage finances or most activities that adults do, but that doesn’t mean he doesn’t have a purpose. Nick has Autism and FAS but that’s not who Nick is. We all must push through and look past a diagnosis written on a page to see who people are, without judgment or preconceived notions of who they are. I read once, “because you meet someone with Autism only means you have met one person with Autism.”

Nick celebrated his 25th birthday April 2 which is also World Autism Awareness Day. He lives at home with our parents and attends a very small bible college two nights a week. Nick spends some weekends with us as a respite for our parents. My daughter Isabelle is 17 and son Braxton is 15. They have grown up with Uncle Nick. One day when Braxton was around nine he was in the kitchen with me. He asked, “What happens to Nick when Mimi and Pops are in heaven?” To this I responded, “Nick will come live with us, and we will take care of him.” Braxton pondered this for a few minutes and said, “What will happen to Nick when you and daddy are in heaven?” To this I responded, “I am not sure buddy, why all the questions?” Braxton quickly said, “Don’t worry mama; I will take care of Nick.” Even as a nine-year-old he knew we would take care of Nick as he probably wouldn’t be able to live alone without supports. The lack of activities of daily living skills still does not define who Nick is, what his purpose is nor what’s to become of his future. Nick has never been employed and his plans for ministry are a dream, his dream and one he is focused on achieving. I have no doubt Nick will be laser focused on achieving this just as he was with lining up his firetrucks or learning to play instruments.

Autism facts from the Autism Speaks website:

  • In 2020, the CDC reported that approximately 1 in 54 children in the U.S. is diagnosed with an autism spectrum disorder (ASD), according to 2016 data.
    • 1 in 34 boys identified with autism
    • 1 in 144 girls identified with autism
  • Boys are four times more likely to be diagnosed with autism than girls.
  • Most children were still being diagnosed after age 4, though autism can be reliably diagnosed as early as age 2.
  • 31% of children with ASD have an intellectual disability (intelligence quotient [IQ] <70), 25% are in the borderline range (IQ 71–85), and 44% have IQ scores in the average to above average range (i.e., IQ >85).
  • Autism affects all ethnic and socioeconomic groups.
  • Autism can affect the whole body.
  • Attention Deficient Hyperactivity Disorder (ADHD) affects an estimated 30 to 61 percent of children with autism.
  • More than half of children with autism have one or more chronic sleep problems.
  • Anxiety disorders affect an estimated 11 to 40 percent of children and teens on the autism spectrum.
  • Depression affects an estimated 7% of children and 26% of adults with autism.
  • Children with autism are nearly eight times more likely to suffer from one or more chronic gastrointestinal disorders than are other children.
  • As many as one-third of people with autism have epilepsy (seizure disorder).
  • Over the next decade, an estimated 707,000 to 1,116,000 teens (70,700 to 111,600 each year) will enter adulthood and age out of school-based autism services.
  • More than half of young adults with autism remain unemployed and unenrolled in higher education in the two years after high school. This is a lower rate than that of young adults in other disability categories, including learning disabilities, intellectual disability or speech-language impairment.
  • Of the nearly 18,000 people with autism who used state-funded vocational rehabilitation programs in 2014, only 60 percent left the program with a job. Of these, 80 percent worked part-time at a median weekly rate of $160, putting them well below the poverty level.
  • Nearly half of 25-year-olds with autism have never held a paying job.

https://www.autismspeaks.org/autism-statistics

 

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