THE BLOG
03/28/2016 04:13 pm ET Updated Dec 06, 2017

Ten Things Not to Say to an Autism Mom...Really

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I have been itching to write this for at least a couple of years now. When I decided to take the plunge and actually start blogging, this was one of the first things that came to my head. So without further ado....

TEN THINGS TO SAY TO AN AUTISM MOM (or Dad) IF YOU WANT TO GET THROAT PUNCHED

You'll notice I changed the title a bit from what is featured....I didn't want to be too aggressive from the get go!

1) He looks so normal.

This is without a doubt the thing that I struggle with most as a Mother with 3 children on the Autism spectrum. Because this is a neurological disorder, often times there are very little physical manifestations, if there are any at all. So while my beautiful children appear to be neurotypical (yes, this is the correct term to use, or typical is good to use as well) on the outside, their disorder is still very present in their everyday life. Still don't believe me? Come over and hang out in my place for 48 hours, I dare you.

2) I think you're wrong about her being Autistic.

Yes, you're right. Even though she was diagnosed by two qualified professionals (A behavioral psychologist and a Speech Language Pathologist), has an IPP in place at school, receives assistance from an EA during school, and is receiving additional support and funding through government agencies, she shouldn't have her diagnosis. Shall I gather the team of professionals so you can tell them they're wrong too?

3) My child has meltdowns too, that's a normal part of toddler/childhood.

Um, temper tantrums are normal yes. Meltdowns are COMPLETELY different. I'm not an idiot. I know what a temper tantrum is, and my children are not immune. I have absolutely witnessed temper tantrums from all three of my children, and I can assure you I know the difference between them and a full scale Autism meltdown. (Just a basic chart to help you see the difference too)

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4) Have you tried gluten free, chiropractors, essential oils, massage therapy, acupuncture, and just about every other idea to help with Autism that has ever been suggested ever???

No actually, since receiving Braydon's diagnosis 2 1/2 years ago, I've put my head under a rock, and have been plugging my ears to everything that has potential to help my child. I have done research, talked to my doctor, the pediatrician, and read until my eyes hurt on things that can help my children. Thank you for assuming that I'm living in oblivion.
I think there is a fine line here between helpful suggestions, and unsolicited advice. Very similar to having a new baby, everyone has their opinion on whether to breastfeed or bottle feed, co-sleep or sleep in a crib, soother or no soother. My point is that unsolicited advice generally comes from someone who does not have any information about your child. If you are a dear friend and saw something on Oprah that you think would be helpful to my child, that maybe I hadn't considered, please feel free to share!



5) My neighbor's cousin's best friend's nephew has Autism, I totally get it.

Actually you don't. When you have met one child with Autism, you have met one child with Autism. Period. They are all different. Some may have similarities, but I have three beautiful children who share the exact same diagnosis, and they couldn't be more different.

6) Just don't make him something different for supper. When he's hungry enough he will eat.

No. You're wrong. He won't. Before Braydon was diagnosed with Autism, I tried that. He literally would not eat anything but the cereal bars, and perogies I would fix for him every day. One night I was fed up, and I tried leaving the chicken and rice out for him. He refused it. I put him to bed hungry, and the poor little soul woke up crying at midnight and I could hear his tummy growling. Never again. I don't care what he eats as long as he eats. Researchers at Marcus Autism Center at Emory University School of Medicine reviewed and analyzed all published, peer-reviewed research relating to eating problems and autism spectrum disorder (ASD). They found that children with ASD are five times more likely to have mealtime challenges such as tantrums, extreme food selectivity and ritualistic eating behaviors.

7) Maybe if you discipline your child, he won't act like that.

This was actually said to me when Braydon was having a meltdown in the mall. An older lady muttered it as she walked by and shook her head. Well, I can't spank the Autism out of my child any more than I can slap the ignorance outta you lady. Enough said.

In all seriousness though, the wiring in my child's head is different. If I spank my child, he won't make that connection between his behaviour and the discipline tactic used. The only thing he will know is that his mommy hurt him. I have attended a 3 month long course in how to deal with discipline issues for children with special needs, I can assure you that the methods I have learned are slightly more meticulous than just giving them a good swat on the butt.

8) Why do we have to put a label on everything now a days?

The short version of my response to this question is, to give my children the best chance at the best life I can provide for them. Sure my daughter's awkward social interactions and rigidity can be easily passed off as "not a big deal" while she is 6. When she's 26, and can't get a job because she doesn't have the social skills required to even get through the interview, then it's a big deal. When she's 16 and falls to the floor in school sobbing because someone took her usual spot on the bleacher's in an assembly, then it will be a big deal.

There is a great deal we still have to learn about this disorder, but what is evident already is the importance of early intervention. With proper therapies and techniques introduced to children on the spectrum, it can greatly increase their odds of a reduction in symptoms, particularly when introduced early in life. In order to access many of these supports, an official diagnosis IS required. I would be doing my child a disservice if I chose to not obtain a diagnosis.

9) Did you immunize them?

The short answer is yes, I did.

No, I do not believe that vaccines cause Autism. It is troubling to me that there are parents who choose not to vaccinate for fear of their child getting Autism. Essentially they are more okay with their child developing a life threatening disease and potentially risking death than they are with their child getting Autism. A bit insulting for a Mommy with 3 of these beautiful souls.

(This point can be a huge source of conflict for many, and that is not my intention with my post. This is simply my opinion. I do intend however, to write another post another day to really get into this, as it is something I am passionate about.)

10) I'm so sorry.

I can cut some people a bit of slack on this one, as anyone who knows me, and my life, knows that living with children on the Autism spectrum is a daily challenge. However, my life is not to be pitied. While they bring significant trials to every day of my life, there are no adequate words to describe my gratitude to them for teaching me what is important, and what really doesn't matter at all. Every day, these beautiful perfect souls make me grateful to be alive. I am humbled, and deeply honored to have the blessing of being their Mom. Lorelei's unfailing honesty, almost to a fault. When she tells me she's not feeling well, I know for a damn fact she's not feeling well. I don't ever have to worry about her stretching the truth. Jax's unconditional love and caring. When he sees me break down and cry in a moment of grief (which I try not to do in front of them) he will come over, put his hand on my back, look to me and say "Mommy hurt?" then hug me. Braydon's simple untainted view on life. I don't know how to explain it, other than when I look into his eyes, I feel joy. The pain, and turmoil of our bizarre world melts away. All that is left in that moment is perfection. He doesn't care what brand of clothing he's sporting, or how big his house is. He doesn't care what kind of vehicle we drive, or about how much, or how little is in the bank account. The only thing that matters to that beautiful soul is how much he is loved. If we all strive to see the world as he does, I can only imagine how beautiful it would be. Utopia.

For those of you wondering what TO say to an Autism parent, please stay tuned as part two will be coming up!

This post originally appeared in www.widowandautismmommy.com