A Letter To The Parents That Don’t Live With Autism

Autism spelled out in letter blocks on white background with copy space

Many parents want the same things for their children: a healthy, happy, successful life. Isn’t it true that you just want the best for your child? So why do we have to be so judgmental of other parents that may not do things the way we do it? And why do we feel that it is our right to pass along our thoughts and unsolicited advice to other parents (these could be parents you know or total strangers), especially when their child is having a meltdown in public? Do you enjoy it when others tell you how to parent? Let’s be honest, we all have had that friend, mother or mother-in-law who bestows their best parenting advice on us and we just want to tell them how much we disagree and remind them them that we didn’t ask for that advice…but if you’re like me, most often we bite our tongue and smile.

Now imagine being the parents of a child with special needs, a child with autism spectrum disorder (ASD) or sensory processing disorder (SPD), for example. The parent of a child who is happy to get through just ONE 10-minute run to the grocery store without a meltdown. Can you imagine living that way, day to day? Not being able to run the errands you need to run because each store has it’s own things (sights, sounds, smells, etc) that will set your child off?

Parents of children with ASD and SPD live in this world EVERY. SINGLE. DAY. Just try to imagine that. Seems exhausting right? You would probably feel defeated, isolated, frustrated and all other types of feelings as a result of not having the luxury to just run to the grocery store to grab that one item you forgot, or even do your weekly grocery shopping.

Well, it is time to start understanding what these parents go through on a daily basis. So here are some truths to help you, the person without a child with autism, better understand what you may see when you are in public. With 1 in 68 children receiving an autism diagnosis these days, your chances of seeing at least one child in the store with autism when you do your weekly shopping is highly likely. And you may never know if they have it or not, but is that really your business? I digress…

Here are some points to consider, all of which were shared by parents of children with ASD and/or SPD:

  1. Telling a parent their child on the spectrum “isn’t that bad” because they appear to be having a good day is not taken as a compliment.Spend a full day in their house and then you may have a new appreciation for parents with children on the spectrum. You sure as heck wont be making comments like this anymore.
  2. Saying “they don’t look handicapped” is not a compliment either.Often times, children with autism don’t have a LOOK or a set of “features” to make it readily obvious that they have autism so you may never know if it’s a 3 year old in meltdown mode because they need a nap (we call them threenagers for a reason) or a child with autism that is totally overwhelmed by the sounds, lights and hustle and bustle of the surrounding environment. Either way, neither of those parents need the advice of a stranger, so keep it to yourself!
  3. Children with autism are NOT brats just because they have a meltdown in a restaurant or the middle of a store. In fact, they often cannot help it as their body and mind are experiencing total overwhelm and once they are in this state they need to work through it (without your help) to come out on top and continue on. Let the parent be the parent and do what they need to do without your commentary.
  4. Advice from bystanders is not necessaryand the extra language input from strangers can make the child with autism escalate, making their meltdown even worse. Do you really want to be that person who makes it WORSE for that child or parent? Think about it next time you go to give a piece of advice to a parent of a child in meltdown mode.
  5. No two children with autism are the same.Just because you meet or know ONE child with autism does not mean you have an understanding of what autism is. It looks different from one child to the next. Similarly, no two children with special needs are the same…just keep that in mind.
  6. Parents of children with autism are not ignoring their child’s meltdownswhen they let them kick and scream on the floor, they are hiding their embarrassment (yes, they have human emotions, too…after all, they are human just like the rest of us) as they let their child do what needs to be done so their child can regulate themselves, get back on track and they can proceed on. Negotiating with a child in that moment will only make things worse and the best way to handle it is to ask the parent if they need any help and move on if the parent says NO!
  7. It is NOT appropriate to speak to a child that you don’t knowbecause you think you have words of wisdom or advice that will help snap them out of meltdown mode. Again, you are just going to make it worse.
  8. You are not entitled to an explanation as to why someone else’s child is acting a certain way.Again, 1 in 68 children these days are diagnosed with autism. Maybe it would be best if you would just consider that the child in meltdown mode that appears to be very upset or angry is acting the way they are because that’s all they can do in that very moment. Maybe they are doing their best and the parent is doing their best and it’s up to you to develop some empathy and compassion. Try to relate to it if nothing else and give mom a look of “that sucks, I’ve been there” rather than unhelpful advice. The look of understanding instead of a look of disapproval will go a LONG way for both you and the other parent.
  9. Do not call 911 because you don’t understand what is going on and you think this parent needs help.It has happened and it is not just embarrassing to the parent and upsetting to the child but completely unwarranted on the part of the bystander.
  10. Last but certainly not least, don’t feel bad for that parent.The last thing these parents want is for you to feel bad for them. They just want you to be educated on how hard it is for them to live with a child with autism and understand to the best of your ability that their child is not melting down because they can’t parent or because the child is a brat. As we already clarified, neither of those are the case! Empathize with them and move on!

The goal of this post is not to shame anyone but to help spread awareness, acceptance and give the slightest glimpse into what it looks like to live the daily struggle of a parent of a child with autism. It’s time we all open our hearts and our minds and start understanding that being empathetic and educating ourselves is necessary so we can truly learn to help one another and support each other as parents, without the disconnect, separation and isolation that so many parents of children with autism experience on a daily basis.  After all, we are all parents and we all want the best life possible for our children. Let’s strive to get there together!

 

With Love,

Hallie