To most people, Alex appears to be like any other five-year-old kid …
As a National Grid employee, I am proud to be part of an organization that places tremendous value on inclusion and diversity. Like many colleagues, I can see the power of having a diverse culture in action in our workplace every day. As a parent of a child with special needs I have broadened my thinking around inclusion and diversity, and am hopeful my child will benefit from an inclusive and diverse culture in our community as he grows.
Alex is a sweet and smart five-year-old boy who was diagnosed with Autism Spectrum Disorder (ASD) nearly two years ago. He is considered to be high-functioning and mild on “the spectrum.” According to the advocacy group Autism Speaks, ASD and Autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. I’m hoping by sharing Alex’s story I can help bring additional understanding and awareness to this often misunderstood disorder.
To most people Alex appears to be like any other five-year-old kid. He enjoys running, jumping, playing sports and just playing in general. Alex struggles somewhat with the difficulties mentioned above. We realized early on that Alex was speech delayed and he has been receiving speech therapy since he was 22 months old. As he grew it became clearer he needed more than just help communicating.
There were several challenges we had to face. As a toddler, Alex would have complete meltdowns if things weren’t in a certain order or his routine was broken in any way. Because he couldn’t always communicate his wants and needs he’d sometimes start screaming for what might have seemed to be no apparent reason. He had to be reminded to point to what he wanted or prompted to say “I want/ I need…” and those things were no small task. His frustration levels were heartbreaking. He also had sensory issues we just didn’t understand. Bath time, for instance, was torture for everyone. Alex screamed in anticipation of water being poured on his head to wash away the shampoo. Alex’s speech therapist suggested using social stories to help Alex make sense of the world around him. Social stories take common situations that can be overwhelming, particularly for children on the spectrum, and break them down into simple steps. Over time the use of a bath time social story helped Alex “get through” his bath and not be on sensory overload.
As first-time parents, many times we weren’t sure if what Alex was experiencing was typical for toddlers or if it was something else. The turning point for us was after a severe meltdown Alex had when he was three, because our car was parked in a different place than it normally was at home. Through his cries he screamed “Fix it Mommy, it’s not right.” After that meltdown subsided he came to me, threw himself in my arms and said repeatedly, “I need help, I need help.” I’ll never know exactly what he meant in that moment. I suspect he meant literally “Help me move the car.” However, I knew he needed more help than we were giving him at that time. That night, my husband and I each took an online evaluation that helps families determine if a child should be tested for ASD. Our scores were almost identical. Shortly after that, Alex was tested and diagnosed with ASD.
Today – through the right combination of therapies (speech, occupational and behavioral) – Alex is truly thriving. He has also benefited from an inclusive classroom setting where there is a mix of typically developing children and children with special needs and various educational supports. Communication, social interactions and repetitive behaviors are still challenges for him, but he continues to receive the right levels of support, which enables him to continue to make progress in overcoming those challenges.
Since Alex has been diagnosed with ASD, our family has been on a journey of understanding and acceptance. Here are some of the things we’ve learned along the way:
- Alex’s diagnosis does not define him. He is just simply Alex. Having ASD is a part of who he is, but as an individual he is so much more than the diagnosis would suggest.
- In some ways Alex’s struggles have affected the whole family, including his younger sister. We had to learn strategies to help all of us cope. We are still learning.
- Autism is truly a spectrum disorder and individuals with Autism have a wide range of needs and talents. It’s estimated that about 40% of individuals with ASD have average to above average intelligence and can have exceptional abilities. Although language and communication hasn’t come easily to Alex, reading and math seemed to come almost naturally to him. He can read and has memorized many of the street names in and around our neighborhood. Many times he can give us turn-by-turn directions to get to almost anywhere locally, naming every street and highway along the way. Not bad for a five-year-old backseat driver! Alex often talks about street names and directions in conversation. We, of course, are amazed by this talent. However, it’s not something five-year-olds generally talk about, so it makes it difficult for his peers to relate to him at times. Our challenge then is to nurture his talents but also to help him find balance.
- To fit the spectrum of needs, there is also a spectrum of services available for individuals with ASD. Knowing where to find help is key – like identifying a network of professionals, or others, to help navigate the system. Having a strong faith and leveraging the skills I’ve developed on the job (communication, research, building relationships, negotiating and influencing) have been invaluable in finding the right solutions and advocating for Alex.
To our family, of course, Alex is special in so many ways and he has taught us more than we could have imagined about the value of inclusion and diversity. Alex has reinforced for me that not everyone sees and reacts to the world the same way. He reminds me to continually challenge myself to respect different ways of thinking and find ways to effectively communicate with others who may think differently than I do.
Before Alex, my understanding of ASD was very limited. I suspect the same is true for many others. Often times, folks know individuals with ASD who have more severe developmental delays or disabilities than Alex does. My hope is that through our family’s story we can shed some light on the other end of the spectrum, where the impact of the disorder is not always visible to others. Ours is just one story among many within our National Grid community. If you have a story to share please do, so we can all benefit from broader awareness. If you’re interested in learning more about ASD, please visit www.autismspeaks.org.
Check out previous articles in the series:
Overcoming Adversity: Meet National Grid’s Michael Brodsky http://us.ournationalgrid.com/news-article/overcoming-adversity-meet-national-grids-michael-brodsky/
Disability Mentoring hits Res Woods http://us.ournationalgrid.com/news-article/disability-mentoring-hits-res-woods/
Who Helped Who? http://us.ournationalgrid.com/news-article/who-helped-who/