It wasn’t until the day that one of my children was diagnosed with both Autism Spectrum Disorder and Sensory Processing Disorder that I realized quite how upsetting the topic was to many people. I still do not know why labels that are used for medical purposes, that open doors for children in need, can be such an issue for so many. After all, the word “Autism” to me is just a word. My child is still my child, and the world we live in may be unique at times, but it is also extraordinary.
I’m not sure if people just don’t know what to say, or if they are simply uninformed and inexperienced. As a parent of two children who face specific challenges, I can assure you that there are a list of things that I have had said to me that are anything but helpful.
Here are just a few: 1. Don’t worry, he is just a being a boy or she is just being a girl, because boys are like this and girls are like that.
Yes boys and girls are different often times, but there are many signs and characteristics of autism spectrum disorder that if missed or ignored could be hurtful to your child if they do not get certain resources to help them overcome the adversity in their lives early on and build upon the many amazing qualities they already have.
2. At least they look pretty normal. If you just looked at them you would never know.
First: “normal” is a joke. Second: I never said that my kids were not “normal.” Third: what they look like at first glance does not directly correlate with the obstacles they face in their lives or that we face in our household. Fourth: I would love my child no matter what they looked like.
3. Doctors and therapists are just taking advantage of you and don’t always know what they are talking about. They are just getting you all worked up over nothing.
I am just going to insert some ????? here because this statement is insulting to many people on many levels. There is no comment even worth the time to respond to a comment that is clearly more about a person’s denial and own feelings than the life and best interests of a child.
4. There are plenty of kids who don’t talk. All kids develop at their own pace.
At least this one contains a true statement. All kids do develop differently, however that is already taken into account when deciding whether or not a child has a developmental delay. Also, lack of speech is not how one defines ASD.
5. He/she is not like the “those kids” that I know with Autism. He is not like “those kids” that are in my son’s class at school.
First of all, “those kids” are amazing. Based on what you are saying, and your delivery of the statement, I can tell how little you actually know about “those kids” and their families. Secondly, if you have seen one child with Autism you have seen one child with Autism, nothing more, nothing less.
6. He/she is not autistic because they are talking. It is not like they are rocking in the corner.
Anyone who has ever spent time with children with ASD would just laugh at this uneducated, ridiculous comment. Besides, it is not your job to tell me what is or isn’t going on with a child who I spend nearly all of my time with, nor is it my job to waste my energy trying to convince you that what we live is real.
7. He/she is just little. They will grow out of it.
While children may outgrow their clothing and shoes and will gain more skills as they age, the progression isn’t natural to everyone. There are so many resources out there available to help children so that they can live better lives in the future, and waiting until they “grow out of it” can mean missing your window of opportunity. When a child has ASD you will spend a large amount of time happily and desperately trying to get into their world and to open the doors of communication and interaction. Once you find a way to open that door, you work hard together to make sure that the door doesn’t close again.
8. He/she is doing so well, it looks like ASD isn’t there anymore, or never was.
If any child or person that faces adversity makes strides of any kind, we celebrate and throw a party in our head, not suggest that all the beauty, hard work, and love to make it happen didn’t exist.
9. ASD is so over diagnosed. Anyone today could be diagnosed with ASD.
While the spectrum has gotten wider, in 2013 they actually made the requirements for diagnosing ASD stricter. As a loving mother of a child with ASD I can assure you that it is very real, and unless you live every moment in my life and house with me, you really should just inquire nicely about what you do not understand or just say nothing at all. There are two other people in my household who do not struggle with ASD, so it can’t be anyone and everyone. Your opinion of the prevalence of ASD has nothing to do my child and in no way is comforting to me. All it does is distance us.
10. There is nothing wrong with your children; you just cannot handle them. They just need tough love and more discipline.
If you knew what I could handle and have in a day you would never make such a comment, because the story of my life is living proof of how strong I am and what a great mom I am. A child with ASD or a child that faces adversity doesn’t need tough love and more discipline. Yes, all children need rules and to know what is expected of them, but in order to follow rules you need to understand them. There is not a day in my house where there have been no rules and I just sit back giving my children carte blanche to do whatever they choose. Nor has there been a day where we focus on tough love because in my family, we focus on only the purest and kindest type of love there is. Life can be tough enough at times, but love never has to be.
11. I Wish My kids Did That
There are so many unique and fantastic things that my child does, but his advanced knowledge of letter and shapes is not the only piece of the puzzle. It may be one of his many strengths but is can also be hard to watch a child stuck on skip who does the same thing day after day for years. Not to mention all the other kids are playing together, and I know those letters are there to protect him from what is happening around him. He is isolated and while this comment is not meant as rude, unless it is your child I am not sure you would not get why it can be frustrating.
Whether you have a child or grandchild with ASD, know a family navigating their way through it, or simply are an individual who wants to learn more about it. Please like and share this post. As always I’d love to hear your thoughts and comments.
By Jessica Nieminski
Latest posts by Jessica Nieminski (see all)
- The Power of Conversation - May 26, 2017
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- A Letter to My Daughter: Having a Sibling with ASD - February 18, 2016
- Just Jump: Making the leap to plan and decide - January 29, 2016
- The issue behind Autism as a “trend setting” diagnosis - December 23, 2015