In the mid-twentieth century, Cassandra wandered off in Sears and secreted herself in the center of a circular clothing rack. Frantically, her mother searched for her. But the bright lights, packs of strangers, and loud noises frightened Cassandra. So, she stayed hidden.
Anytime her mother had a girlfriend over, Cassandra ran to her closet and sat in the dark until they left. Her mom was relieved. Cassandra was terrified.
Figuring out when to speak in a conversation remained difficult for her whole life. She either tuned it out, answered at the wrong time, or interrupted. Cassandra banged her head on the headboard of her bed every night until she was four.
She didn’t speak until she was nearly two. Not a word. One morning, her mother and father argued about her not speaking. Her mother called the doctor and wept. Her mother never cried. To halt the desperate emotional situation, Cassandra spoke in a complete sentence. Her mother concluded she was brilliant. The reality was that Cassandra was autistic. She remained undiagnosed for decades.
What is autism?
Many believe autism is one of many mental health issues that run rampant in our twenty-first century society. It is not. It is a medical neurological condition related to neurotransmitters in the brain. It’s called autism spectrum disorder or ASD. I prefer not to call it a disorder. That implies something is wrong. It’s not wrong; it’s different. If anything, autism is extra-order, surely not a disorder.
On that note, calling it a disability feels insulting. Perhaps it is an extra ability. Cassandra was in sixth-grade math at age six. At no point in her life was she ever able to understand mean girls who manipulated, lied, and deceived. Is that really a disability, or is that an advancement? Surely our society would be a better place if manipulative tactics were nonexistent.
And what about the other alphabet soup diagnoses? ADHD, ADD, OCD, BPD, BD, MDD, ODD, PBD, PDD . . . Did you notice they all end with D for disorder? There are challenges to be sure, but is giving someone a negative label helpful? Or is it just another ding on the shaky self-esteem? Neuroatypical or neurodivergent might be kinder. Although pigeonholing people generally feels a bit judgmental. Let’s hope Hollywood isn’t deciding what’s normal.
People brag about their kids being gifted. Those young people actually qualify for the Handicapped Act because they are outside the bell curve. Some of them get into trouble or drop out of school due to boredom. Why don’t we call that gifted disorder, GD? It’s not all puppies and rainbows.
The upside of the diagnosis
While disorder doesn’t sound nice, there are reasons for the labels. Help is difficult to find without a deeper understanding. Knowing the group of traits guides your assistance.
The government and schools offer a variety of services to support different diagnoses. If you decide that government and school services would be beneficial for your loved one, the negative label makes it possible to get the help. The government institutions won’t help unless the label sounds dire.
Whether to get services and which ones are among the plethora of personal choices. In some cases, people don’t want to admit a diagnosis because they don’t want to be treated differently. Parents may want their students to learn in a typical classroom. Others may want them to have specialized instruction. Judging either the parents or the students for their choices is unkind.
We are all unique individuals; the label is helpful to some. Let’s face it, some people think it’s a hoot to change the names of everything anyway. Case in point: it is not called Asperger’s anymore. As Juliet (Romeo’s gal) said, “What is a name? That which we call a rose, by any other name would smell as sweet.” I’m penning a letter to the DSM (the PhDs who make up the names), suggesting they change them all to flower names!
The Spectrum
Spectrum is the word used to describe the increasing wavelengths of light that define a rainbow. Maybe it is puppies and rainbows! Autism isn’t a one-size-fits-all; it’s a spectrum, a continuous range of skills, manifestations, and behaviors.
Many people on the autism spectrum have a savant, such as language, math, art, maps, or music. Socially acceptable savant skills help them adapt. If you’re good at math, that’s great. If it’s Pokémon or dragons, that’s a more awkward fit into society. But don’t give up; if you’re good with words, a dragon-lover could become a fantasy novelist.
Different levels of autism have varying levels of symptoms. Some can be very low-functioning. They are unlikely to become independent and have the lowest social skills. They will likely be unable to drive and could end up in a group home. These parents are going to have the biggest challenge and need extra hugs, strength, and support.
The IQ is inversely proportional to the assistance required, meaning that the intelligent neuroatypical people can more easily learn to compensate. Gifted ASD kids can learn to fit in more easily. Other sensory issues are harder to cope with for lower IQs. Altogether, it’s a great big, beautiful spectrum with intelligence, symptoms, and personality blending to create unique individuals.
Parents must be realistic about their child’s abilities in order to neither overcompensate nor lack compassion.
Compensating and Learning
Cassandra had a high IQ and learned to compensate for many of the signs of autism. Instead of flapping her hands and arms, she observed hand motions and substituted talking with her hands. Instead of looking shell-shocked when people laughed at her quirky awkwardness, she learned that if she laughed too, they thought she was fun. Even if she never figured out what they were laughing at. Even if she lay in bed at night, feeling confused and broken because she didn’t understand them.
Many bright neuroatypical adults land in computing and engineering. High tech was a soft landing for Cassie. Working with information, not people, was her happy place.
Painful though it was to be in situations where Cassandra felt lost, it forced her to improve her social skills. She had to talk; she had to give oral reports; she had to learn when people were bullying, entrapping, or misusing her. She became successful largely because she remained undiagnosed. While learning life skills was painful, it was also essential.
What it feels like on the inside
Her thought patterns often felt like they replicated the wrong answers on a multiple-choice test. A co-worker suggested she was mentally ill because she laughed at the wrong things. Someone screamed at her, “Can’t you read body language?” (Uh, no. No mirror neurons.)
What others considered normal didn’t brush up against her thinking. People grumped at her for interrupting because she couldn’t read body language cues. Then there was the free flow of non-sequiturs. Annoyance bombarded her for not understanding appropriate responses. Bright lights and big noises sometimes made her cry. Even as an adult, scoldings made her cry because it felt like a thousand times of not knowing what was appropriate, right, and good in the eyes of others.
For the parents, it’s a rough ride. Meltdowns. Balance avoiding those with ensuring their child isn’t manipulating them. Judgement from teachers and other parents. One mom of a neurodivergent boy posted, “No, I can’t spank the autism out of him.” Some assume that if they’re smart, they must understand social mores. No. IQ points don’t improve neural strategies.
Help them Help Themselves
It is easy for the neuroatypical to become agitated. Learn what bothers them and help them avoid those situations. Help them find ways to accomplish challenging tasks independently. If you answer for them or do it for them, they won’t learn, which reinforces the sense that they can’t. Or needn’t. Never let their safety net become a hammock.
For example, let’s say phone calls are difficult. Ask them what they need to hear or believe to make the call. Ask them what reward they want to give themselves after they accomplish the task. Perhaps they need to hear, “You can do it.” Before the call, they say to themselves five times, “I can do it.” Then they make the call and reward themselves afterward. Rewards can be ten minutes of reading, a favorite snack, or cuddling with something soft. Whatever works for them.
Be patient whenever someone is doing their best. We are all happier when we believe everyone is doing the best they can. And gently, when we interact, let’s make sure they aren’t using their divergence to get their way.
Don’t allow them to become addicted to video games and do nothing productive, while you handle all their difficult tasks for them. Being competent to look after their own needs gives them purpose and self-respect. Each person should contribute as much as possible to the common good to sense their intrinsic value to others. Every one of us needs purpose, leading to feeling significant and esteemed.
Special tablets greatly improve communication for people with Autism and Down Syndrome. Using this technology has proven that significantly more knowledge is retained than previously understood. In many cases, the IQ is not as low as imagined.
Moving forward
Help them become as independent as possible. Be careful not to be codependent. Don’t do things for others that they need to learn to do. Even if it’s hard for them. Even if it’s easier for you to do it than it is to teach them. Teach and work from a place of compassion and kindness.
If you know a parent who has daunting challenges, be kind, supportive, and compassionate.
In our heads and hearts, let’s give others dignity. It’s not wrong; it’s different. We all age. Imagine being 90 years old, wearing a diaper, in a wheelchair, and you can’t remember what you ate for lunch. How would you want to be treated? Let’s remember not to judge others, but to treat others with dignity.
Famous autistic people include Dan Aykroyd, Lewis Carroll, Bill Gates, Thomas Jefferson, Albert Einstein, Steve Jobs, Nikola Tesla, Mozart, Michelangelo, Elon Musk, Jerry Seinfeld, Sir Isaac Newton, and Leonardo da Vinci. Let us not judge or view anyone with negativity.
Matthew 7:1 Do not judge, or you will be judged.
Heavenly Father, help me not to judge or label others. If someone seems different, may I never jump to the conclusion that they’re wrong or label them in a negative or degrading way. Grant me the grace to be full of compassion and kindness to those around me. Show me how I can help them become more independent. Especially when things are difficult, give me the strength to bear with others in love. May I grant others dignity and hope. Amen
