Juhl: 5 things not to say to parents of neurodivergent children

Fifteen to 20 per cent of the world population is estimated to be neurodiverse. We have some tips for the other 80 per cent.

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There are no greater rewards than those reaped by the caregivers of neurodivergent children. I’ll admit my bias: I have raised two and fostered two.

The word “neurodivergent” encompasses any number of brain differences, including ADD/ADHD, autism, dyspraxia, dyslexia and Tourette’s. These are people who learn and behave outside of what is typically expected. The invisible hardships involved with parenting a neurodiverse child begin with learning what the child’s differences are and how to accommodate them. Caregivers might struggle alone before seeking the help of a medical professional and finding a supportive community.

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There is a lifetime of labour educating family, teachers and fellow parents. There is a lifetime of delight as we watch our children adapt and thrive, using what is classified as a disability to transform the world.

A rainbow of language is used to describe aspects of neurodiversity. These are some of the most common terms.

Glimmers: Speaking of rainbows, glimmers are one of the loveliest characteristics of neurodiversity. A glimmer is a thing that brings peace and contentment — it could be gardening, colouring, humming, petting an animal or a range of other things that arouse the person’s senses. When a glimmer has been identified, it can be tapped during stressful moments to encourage calm.

Masking: It doesn’t take a child long to figure out what actions make adults and peers uncomfortable. Certain behaviours — snapping their fingers, speaking too loudly or softly or reacting in a big way to events others consider no big deal — might lead to discipline or other negative consequences. Once a child has identified traits considered inappropriate, they hide them, mimicking “acceptable” behaviour. Masking is an exhausting process and will often lead to meltdowns.

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Meltdowns and shutdowns: Meltdowns are not tantrums. There is only so long one can withstand the constant pressure of masking or being in a highly stimulated environment. A child might melt down — crying, screaming or being physical — when triggered by an event or when they are in a safe space after being in an overstimulating environment. It is akin to a panic attack. Or they might shut down, pulling into themselves for a time, during which they cannot and will not communicate.

Triggers: A trigger — something that is most likely to cause a meltdown or shutdown — can be anything from a perceived insult to a loud bang to being in a crowd to a clothing tag touching part of their skin.

Stimming: To an outsider, self-stimulating behaviour might seem annoying. Yet this means of self-regulation is the most useful tool a neurodivergent person has. It can include rocking, humming, tapping, using a fidget toy or any other repetitive behaviour. Stimming is only a problem if it negatively affects the person socially or physically.

The parents of a neurodivergent child have been decoding glimmers and stims for years. They have a series of contingency plans to help their kid navigate society and make their home a safe space. It’s taken years of trial and error. There have been tears and arguments, pleading with the child and co-parents.

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And there has been joy — more joy than can be calculated.

Neurodivergent people are overflowing with creativity and the ability to turn a topic around and show it to us in a completely different light. They are innovative, teaching us to communicate in unique and beautiful ways. They might be brilliant multitaskers or have an enormous amount of hyperfocus. Some of the greatest creators are believed to have some form of neurodiversity, such as Michelangelo, Nikola Tesla, actor Emma Watson and Olympic gymnast Simone Biles.

It’s easier to not include neurodiverse families in group activities. The child might be prone to impulsivity. They might be finicky about what and how they eat. Their brainstorms are hard to follow — and they want to tell you all about them. Maybe they just want to sit in a corner and watch games instead of being involved, making it hard to know whether they’re having fun.

Fifteen to 20 per cent of the world population is estimated to be neurodiverse. For the other 80 per cent, here are a few things you can avoid saying.

Are you sure your child has [specific neurodiversity]? They’re fine at my house. Trust parents. Rare is the caregiver who is going to pull a diagnosis out of a hat and declare it for their child. It costs them every time they have to “come out” on their child’s behalf, so it’s not something that’s done lightly. What you are seeing is masking at its finest. The kid presents as typical in your environment; it’s how they’ve learned to survive. When they get home and the pressure is off, caregivers are braced for a meltdown.

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Have you tried [diet/meditation/soccer/crystals]? This is none of your business. If someone wants advice or suggestions, they’ll ask for it. They’re tired of hearing about Red Dye No. 40 and how joining the military will “fix” their kid. Getting a diagnosis and finding the right treatment, if treatment is necessary, is a long process during which many avenues will be explored. Privately.

I’m so sorry your child has this! Maybe you didn’t hear the part about the joy. That’s OK. You might not have thought about how it would feel if a fellow parent said something like, “Oh, I’m so sorry your kid is a ginger.” Many neurodivergent children have neurodivergent parents, so please step carefully.

I put my foot down with my kid. They know the limits. The subtle difference here is that parents know their neurodiverse children’s limits. There are rules, but they might look different from what goes on at their friend’s house. What seems like letting a child get away with certain behaviour is a carefully considered choice to pick a battle and decide what the family’s true values and priorities are.

Can’t your child just take off their headphones/stop tapping their feet during supper? Sure they can. See above, re: masking. But if you’d like the child to feel comfortable, consider whether the annoyance is worth asking them to handle their anxiety a different way.

We know you mean well. We know you want our kid to succeed as much as we do. If you want to be supportive but aren’t sure how, it’s OK to ask us and it’s OK to do some reading on your own.

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