I’m a little late to the fanfare, but this week, I finally had the chance to sit down and catch up on the Internet. Two people named Kodi Lee and Greta Thunberg were very prominent on my feed; so I clicked and followed links, like a moth lured by the social media flame. I watched videos of America’s Got Talent‘s newest champion, Kodi. He was introduced as a 22-year old blind man with autism, and his audition blew me away. Next, I read up on Greta, a 16-year old environmental activist. Only in later articles did I come across the fact that she has Asperger’s Syndrome (AS). My title hints at some of the things I’ve been thinking of since my introduction to these amazing youth.
As a Speech-Language Pathologist, I’ve worked with many children with autism. I’ve seen the many initial types of reactions from parents when told of their child’s diagnoses. They range from denial or anger, to resignation and apathy. How well they address these emotions usually reflects in the way they respond to the needs of their child.
There are parents that bring their child in for therapy, almost perfunctorily, but show no apparent interest in what transpires during our time together. Some seem to confuse therapy with daycare, dropping them off a few hours a day, and then whisking them away without listening to feedback from the session. I’ve had one parent tell me that she didn’t read the progress notes, because it’s my job to teach her child what needs to be learned. Another gave me instructions “not to aggravate” the child and “just give him what he wants” to avoid meltdowns. Then there was one parent that gave the caregivers complete authority. I didn’t get the chance to meet her because she never came, not even for the initial evaluation, and declined requests for a round table with the entire intervention team. This same parent eventually pulled her child out of therapy because she reportedly asked her 3-year old son if he wanted to go back to the center, and he had said no.
But there are also those parents who love to hear about their children’s little victories, whether it’s sitting on a chair for 5 minutes straight, or verbally asking for a toy for the first time. There are parents that aren’t fixated on finding a quick formula or a “cure,” but are more intent on finding the best way to connect with their children; and how – in turn – their children can express themselves best. My favorite types of parents are those that are receptive and collaborative. They try to include the techniques that we teach them in their everyday activities, and they share what works for them at home. They concede that we spend mere hours in a week with their precious ones, while they have them their entire lives.
Some of the best scenarios I’ve seen have changed entire families for the better. It has not only endowed the parents with more patience and perseverance, it has also taught siblings to be kinder and more compassionate.
In my short look into the Lee family, I could tell they’ve been through a lot. One video quoted the mother having said that Kodi used to have 30 tantrums in a day, until they noticed that music and performance was the outlet he needed all along. To encourage his development, his brother started performing with him as well. While Greta’s parents were reportedly against her radical activism in the beginning, we cannot ignore that they have provided her with the education, guidance, and support to get to where she is now.
It is not uncommon for children with autism and other neurological conditions to manifest a splinter skill. I first saw this with a cousin of mine who has Williams Syndrome. Even when we were kids, we’d sit by her on the piano and she could instantly replicate any of the songs we’d play for her on the radio. She only had to hear it once, but she’ll remember that song if I hummed it the next time I saw her. I had a client with autism who could impressively build structures with Lego blocks just by looking at a model, with no instructions. My friend’s son, also on the spectrum, has been painting masterpieces since he was 5. The parents of these individuals are fortunate to have found their children’s joy.
Kodi’s mother keenly saw and acknowledged her child’s interest, gave him the tools to develop it, and sought opportunities for him. And look at the difference it has made. Look how he shone. Granted, some talents are more evident than others, but it’s a beautiful reminder to continue to look for an individual’s inclinations and strengths. It’s magical when you find what lights a fire in a child.
And what a blessing to have the analytical and impassioned support of Greta in fighting climate change! The crisis is an unusual interest for a teenager to have zoned in on, but we are the luckier for her attention to it. So many adults (only by chronological age, but I can’t say the same for their EQs and IQs ?) have been bashing Greta, belittling her capacity to form an opinion as a “child,” and making fun of her for her “mental disability.” Even Greta’s supporters have sometimes worded their praises in such a way that implied she is doing great things despite her syndrome. The reality of it is, she is doing great things because of her syndrome.
Individuals with AS have been described as having, “(an) obsessive interest in a single object or topic to the exclusion of any other. (They) want to know everything about their topic of interest and their conversations with others will be about little else. Their expertise, high level of vocabulary, and formal speech patterns make them seem like little professors.” (From National Institute of Neuroloigcal Disoders and Stroke). Much like another trailblazer, the scientist Temple Grandin who was also on the Autism Spectrum, she has the potential to excel and succeed in her field because of her unshakeable focus on the matter. If more people understood what her syndrome makes her capable (and incapable) of, they’ll see that those accusations of her being a puppet for bigger corporations is ridiculous. From my personal experience, you cannot force a person with autism to believe in or act a certain way if they don’t want to! And the bonus? Her pragmatic difficulties may be an advantage to deal with all the haters, because she could probably care less about their disapproval.
When haters go after your looks and differences, it means they have nowhere left to go. And then you know you’re winning!
I have Aspergers and that means I’m sometimes a bit different from the norm. And – given the right circumstances- being different is a superpower.#aspiepower pic.twitter.com/A71qVBhWUU
— Greta Thunberg (@GretaThunberg) August 31, 2019
I wouldn’t still be practicing this profession if I didn’t root for all my clients’ futures. Ignore me whining about how I’m always sick, or that I’m constantly tired. I believe in what I do and who I do it for. If I can help even one child discover what they want, and bring out their voice to proclaim it, my life would not have been a waste. And if their obsession happens to be of ground-breaking importance and beneficial to the world, then I have more than enough motivation to keep on. I am behind every Kodi and Greta.
Note: these are all from my personal experiences. I’m not generalizing all individuals with autism. I respect the uniqueness of every situation. If there are any statements here that you disagree with, feel free to drop me a message.