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My Plea to Parents Worried About the Autism 'Label'

daughter playing with pony toys
My daughter

I’m directing this post to the parents of children who are concerned by some of their children’s “quirks,” and after research are thinking they may be autistic… but are hesitant to get them assessed and diagnosed for fear of what possible effect a label on their children’s behavior may have on their lives. To the parents who love their children and are concerned and worried and feeling overwhelmed and a little lost.

Let’s break it down.

1. It’s totally normal to feel grief over your child not being “normal.”

Every parent wants their children to develop alongside their peers and achieve the same milestones at the developmentally “appropriate” time. No parent likes to watch their child struggle each day with daily tasks. It’s OK to feel sad. Going through the stages of the grief cycle is normal when it comes to having your perception of reality changed. But please don’t let this be the reason you don’t seek further support for your child.

2. Your child probably already knows they’re different to their peers.

Even from a young age, children are perceptive and incredibly bright little creatures and pick up differences in how they may operate in comparison to their peers. They may note that they get affected by certain things but their friends don’t. Having a diagnosis gives a child a sense of identity and awareness of self. It gives them tangible reasons to understand their behavior and preferences. It removes blame – they’re not acting this way by choice or for attention; it’s simply because their brains work a little differently.

3. Don’t keep waiting or hoping they’ll “grow out of it” – act now.

If you are noticing your child has behavior challenges or you’re able to identify several little “quirks” they have, but you’re hoping they’ll just magically grow out of it, please just be brave and seek support. The sooner a diagnosis can be made, the sooner support can be given.

4. Labels are life.

So you’re scared of your child being pigeon-holed into a box, yeah? You don’t want them to be limited on their chances in life? I hear you. Except labels are everywhere in life: noisy, loud, slow, small, big, annoying, quiet, shy, aggressive, anxious, extrovert, introvert. Labels describe a behavior, not a whole person. They can also be incredibly freeing and liberating to a child because they may be the pathway to support and understanding from their community. Sure – there may be judgment. But ignorance is everywhere, and it’s unavoidable. Don’t let it be the reason you don’t seek further assistance for your child at the most crucial and beneficial time.

5. What does it change?

It’s likely your child has been the way they are since birth, and you’ve loved them this way and you will continue to. Having a diagnosis label attached to them isn’t going to magically alter their personality or change who they are. Personalities don’t suddenly change when you get a diagnosis. The contrary often happens: their understanding of self and others’ understanding of them broadens and stretches. Your child is always going to be your child. The things you love about them won’t go away when they’re diagnosed. But the things they struggle with; well, you may find a light suddenly goes on in an otherwise darkened room, or a sense of direction is given when you’re feeling directionless.

6. Look at the big picture.

If you don’t think seeking a diagnosis is going to benefit your child now, can you take a look into the future? It’s really hard to tell what may present as possible hurdles to your child in as little as weeks, months or even years. Accessing support as soon as possible means your child benefits from learning coping strategies, techniques, skills and tools they can then put into place for years to come. What might look like some few minor issues now can quickly develop into more complex issues down the track; and it’s not something you can really predict. It’s better to be on board and informed as soon as you can, to support your child and their future development.

It’s totally understandable to be confused and a little fearful of an uncertain road. But you’re not walking it alone – many parents have done so before, and there is a great amount of support out there available to you. So coming from one parent who wishes with all her might she had deliberated less and acted sooner, I ask you: be brave for your child. It’s OK. It will get easier, I promise. Just take the first step.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.