April 2 is World Autism Awareness day. Parents of autistic children know the unique joys that come with having a neurodivergent kid—and also know the unique challenges that come with it as well.
For World Autism day, we interviewed an autistic life coach to lend a personal perspective on how to best support autistic children, with a list of parenting tips for caregivers, and include a beloved local resource for kids!
Jaesic Wade is a professional coach for individuals and businesses, and got their start in Ann Arbor. They support people to live their most aligned lives, and help businesses develop human-first cultures.
“A significant focus of my work is helping people navigate life and work from a neurodiversity paradigm, and the social model of disability, rather than a pathology paradigm and the medical model of disability,” said Jaesic. “This positions people to be empowered about the agency they have in their own lives and empowers businesses to make changes that accommodate, rather than penalize, individuals for their differences.”
If you are interested in learning more about the neurodiversity paradigm, they recommend reading Neuroqueer Heresies by Nick Walker.
We first discussed what parents and caregivers can do if they suspect their child might be autistic.
First, don’t underestimate the benefit of personal research! There are a plethora of resources online to learn about autism. However, Jaesic said that the following often can be overlooked or misinterpreted:
- The often rigid rules—and perhaps to adults, arbitrary rules at that—children will establish for themselves, not just in play, but in general routines for socializing, eating, hygiene, etc. They may not always be able to articulate why they must do (or not do) something a specific way, but they will show that it’s a rule for them by showing symptoms of distress when forced to change that rule. Being “picky” is certainly a description of this experience.
- Needing to know the “why,” and/or the whole picture, before being able to make a decision, follow through on a plan, or obey a rule/direction. If the child doesn’t agree with the “why,” where they think it’s wrong based on their internal logic, it can be difficult to convince them to proceed.
- The often complete disregard, and sometimes even pushback, of hierarchical systems for social power. Even at a young age, children can see systems of power but not understand why they must behave a specific way towards specific people when they don’t see the world that way or actively disagree with those structures. This can look like bratty behavior in young children and rebellion in teenage years.
- Associated experiences, like hyperlexia or echolalia.
- Stimming in general can look very different from one autistic person to the next – whether that’s repeating phrases/words or noises that they hear (echolalia), yelling/screaming randomly, rocking, flapping hands, jumping, spinning, needing visual distraction, etc.
- Shutdowns and meltdowns are NOT tantrums or unhealthy cries for attention, but rather an autistic human’s physical manifestation of distress and a cue to others their need for regulation. If your child is experiencing frequent outbursts or consistently shutting down, what in their environment might be overstimulating them – physically or emotionally? What can you do to lessen or ease that stressor or trigger?
Jaesic said, “Autism doesn’t have ‘a look,’ only a grouping of behavioral expressions—it is a neurotype, not a condition. What people think autism ‘looks’ like is often conflated with, or confused for, developmental disabilities that can co-occur with autism.”
Supporting children in your life
As you’re reading this, perhaps you are recognizing some of these behaviors in a young child you care for or know. If that’s the case, how can you best support that child in your life?
Jaesic, in giving us the following list of how to best support a child, assures us that these points can be helpful whether or not a child is diagnosed (we’ll get into the pros and cons of diagnoses later).
- Everyone is different – work with your child or teen to find the routines, the clothing textures, the environments, the accommodations, etc. that they can thrive in/with. It will be a lot of trial and error, but once you find the systems that do more support than harm, the better off everyone will be.
- Don’t make their autism their personality, or yours. Autism brings on a spectrum of experiences—good and bad—because of the systems we live in. It’s important to pursue the accommodations and supports that lessen the weight of the challenges you and your child might face while navigating an ableist world. It’s equally as important to celebrate your child for their interests and talents, and to support them in developing more than just survival skills. Furthermore, don’t put your child on display for their autistic traits without their permission or direction. Let them decide how they want to represent themselves to the world.
- Any interaction can be communication, even if words aren’t involved. Your job as a parent is to do the best you can in interpreting your child’s communication, and choose the next best step to reduce or prevent harm while allowing your child as much autonomy as possible.
- If your child struggles with schooling, work with their educational professionals to develop an Individualized Education Program (IEP). Your child does not need to be officially diagnosed to be considered for an IEP.
- Your child may face challenges that their peers might not understand, experience, or may even cause themselves, which may be difficult for your child to navigate. Validate your child’s experiences by showing up to listen and comfort, even if you don’t have all the answers. It’s okay to not have all the answers.
Getting a diagnosis
With the current political climate, I asked Jaesic their opinion on the pros and cons of seeking an official diagnosis for autism.
Jaesic said, “Some individuals feel validated by medical diagnoses—you can know for certain that your child is autistic, and hopefully use that diagnosis to obtain any necessary social services with clarity.” They also point out, “In later years, a diagnosis may also support your child to have work-place accommodations, but there is a risk of them not getting hired in the first place if they reveal their diagnosis within the interviewing process.”
Jaesic said that there are definitely good reasons to pursue a diagnosis, but points out that the world we currently live in penalizes differences. They personally wouldn’t recommend getting a diagnosis unless you are specifically seeking disability benefits for your child, or are in need of other specific services that require a diagnosis.
I asked them to explain the drawbacks of diagnosis, and they listed several reasons why:
- Diagnosis can be very expensive to start, and it is frequently not covered by insurance.
- Diagnosis can lead to people believing there is a “cure” for autism, which there is not (it’s not a condition or disease, but a neurotype). This misconceptualization of autism leads many to subject their children to what has been determined to be abusive therapies by the greater autistic community, such as Applied Behavior Analysis (ABA).
- An autism diagnosis can put an individual at risk for forced loss of independence, as well as prevent any future emigration, or use of a visa, to specific countries.
- Diagnosed autistic people are at a higher risk of involuntary psychiatric commitment as well as being denied other medical care, despite there being legal protections in place to prevent this.
For families debating whether or not they should seek a diagnosis, Jaesic said, “Not getting a diagnosis doesn’t mean you can’t suspect your child is autistic, or that they can’t claim that label for themselves. If you believe your child is autistic, you can—and should—still pursue getting them the support and accommodations they need to thrive. Doing so teaches your child that differences aren’t something to be ashamed of—they’re meant to be embraced—and pursuing support is a healthy thing to do!”
If you want to seek coaching with Jaesic, you can email them at [email protected].
For families wanting local resources, We Rock the Spectrum is an indoor gym and kids’ playground in Ann Arbor that is committed to providing safe sensory experiences and learning opportunities for kids of all kinds. Their equipment is specially designed for children with sensory processing disorders, but is beneficial for kiddos of all ages.
Their open play times are $18 per child ($16 for siblings) with monthly memberships available, and are M-Fr 9:30-6pm and Sa-Sun 9:30-2pm (depending on availability; call ahead or book online).
Other tips from a parent’s perspective
As a parent of a child with suspected (undiagnosed) autism, here are some tips that have really helped my child:
- Create a routine. Routines are important for all kids, but they resonate deeply with neurodivergent children. When children know what to expect, it helps calm and regulate their nervous system.
- Practice deep breathing. During the middle of a meltdown is not a time to introduce new coping skills. Deep breathing, in particular, is especially helpful in activating the vagus nerve and regulating the body. Practice deep breathing throughout your day so it becomes second nature, in whatever way works for you. My family likes Miss Rachel’s, “Smell the flowers, blow out the candles,” for practicing inhales and exhales.
- Create a quiet area. We have a fort set up in our living room and two kid chairs that are designated “alone” chairs. We also keep headphones out. You can set up a special spot in the living room, bedroom, or anywhere else that might make sense. It’s a safe area where, when your child is feeling overwhelmed and might melt down or lash out, they can go here to reset instead. It can be a great idea to keep a sensory kit near your quiet area, with sensory toys, books, or other tools that help your child reset.
- Handling elopement, or wandering. Half of all children on the spectrum will wander at some point, so it’s a common concern for kids as it’s obviously not safe for children, especially very young ones, to wander off by themselves. Common causes or triggers of wandering include: attraction to a specific place, curiosity or sensory overload. Signs that a child may be about to wander include outbursts, stimming, lack of response to questions and frequent looks in the direction of whatever they’re interested in.
What are your favorite local resources for autistic children and teens? Let us know!
