Living with Autism
Doug & Leanne Nagel
Several years ago, our youngest son, Cai, was diagnosed with autism. Since April was Autism Awareness Month, I’d like to share some lessons we’ve learned since then.
We’ve learned that autism is a form of neurodiversity. Many of us are neurotypical. Our brains function in very similar ways to our peers. We process sensory information in much the same way, and, as children, we reach our developmental milestones around the same time as others. Neurodiversity means Cai reaches his developmental milestones on his own timeline.
We’ve learned that, like us, Cai experiences the world through his senses, but unlike us, his senses can sometimes be overwhelming or underwhelming. For example, sometimes, the tag on our shirts is irritating. For Cai, the tag on his shirt feels like sandpaper scouring his skin. Flushing a public toilet is annoyingly loud to us, but for Cai, the noise physically hurts his ears. Cai sometimes bumps into furniture because his spatial awareness is underwhelmed (dulled).
We’ve learned it’s helpful to remember that autism is not a line with binary characteristics of high versus low functioning but a pie with many slices. An autistic person may be great with language (communicating their needs, interacting with others) but experience severe challenges with their motor skills (cannot speak or walk) and moderate difficulties with perception (understanding spatial awareness). Every autistic person has different levels of challenges and abilities on this pie.
We’ve learned that in the past, little was known about autism, so only children who had severe autism were diagnosed, and they were often whisked away to institutions. Autistic people were expected to look and act like Dustin Hoffman’s character in Rain Man: savants with repetitive behaviors and odd factual knowledge. Undiagnosed children like Cai would’ve been seen as weird, sometimes ostracized, and often dropped out of school because they couldn’t “act proper.”
We’ve learned that recently, the labels for autism were changed from autistic disorder, Asperger’s syndrome, pervasive developmental disorder - not otherwise specified (PDD-NOS) to Autism Spectrum Disorder (ASD). What was once considered high or low functioning is now labeled Level 1, 2, or 3. The levels refer to the amount of support an autistic person may require for daily life. This new labeling system is quite controversial in the autism community as the level of support a person may require can change year to year or even day to day, depending on the situation. We’ve learned it’s important to ask an autistic person what support they would like us to provide rather than what level they are on. Asking for input acknowledges that autistic people know best how they can be supported.
We’ve learned that many autistic people stim. Stimming is a repetitive behavior people do for several reasons: a calming technique, a way to process new information, and for fun. Some autistic people flap their arms in a specific pattern; others shake their heads; still others “dance” with their feet. Cai likes to prance back and forth in a line, sometimes bouncing off furniture and sometimes adding noises. Many autistic people cannot substitute one stimming movement for another. If they are “dancing,” it’s because that specific movement addresses their needs.
We’ve also learned that many of us neurotypical people stim. Anytime we’ve caught ourselves drumming our fingers on a table or bouncing our leg up and down, we’re stimming. However, the difference between our stimming and autistic stimming is that autistic stimming is not optional. If an autistic person needs to prevent their stimming until they are somewhere more accepting, they may often end up stimming double later, or they may be unable to participate in their current activity because they cannot use stimming to regulate themselves. As a result, we make sure that Cai has space and time to stim in his classrooms and at home.
We’ve also learned not to expect an autistic person to act like a neurotypical person. Up until recently, it was common to make autistic children do Applied Behavior Analysis (ABA) Therapy to promote “normalcy” by forcing them to maintain eye contact, inhibit their stimming, and ignore their sensory distress. All of this “learning” was often taught through withholding food and preferred toys. Currently, the Judge Rotenberg Center in MA is using electric shock devices to train autist people to act “normal.” In the past decade, many autistic adults have come forward about the trauma they’ve experienced from ABA Therapy.
We’ve also learned to “go red instead” when it comes to supporting the autism community. Some organizations seek to eradicate/cure autism rather than use their funding to lobby for better disability laws, develop better support for autistic people, and enable the autistic community to flourish. Many autistic people would not agree that they’d be better off without autism. In fact, they often say their lives are better for it. This belief does not negate the difficulties of living with autism at all, but it does acknowledge that autism can enrich the lives of those with it.
We’ve learned that an autism diagnosis is not devastating. Yes, there can be grief for the future we thought Cai would have. In reality, though, autistic people live full and happy lives regardless of how much support they need. Cai may or may not get married, own a house, have children, hold a full-time job, or travel, but that doesn’t mean his life is any less rich than his neurotypical siblings, who may or may not do those things also.
Last, we’ve learned the most important thing Cai needs from us is not a cure or lessons in acting neurotypical; he needs our love and acceptance. Cai is Cai. He loves the color red. He delights in playing Uno. He swings super high on the swings. He has autism. And we wouldn’t want him any other way.
Now I am giving you a new commandment: Love each other. Just as I have loved you, you should love each other. - John 13:34