If you are a neurotypical parent raising an autistic child, let me be perhaps one of the first autistic adults you’ve ever heard say this: Yes, it’s hard.
I may get some flack for this article, but I think this is a conversation we need to have.
I often see memes and articles about how difficult it is to raise an autistic child, or how parents of autistic children have stress levels comparable to that of combat veterans.
You know what, parents? You’re right. It’s hard. You’re exhausted, you’re scared, you’re confused, you don’t know what’s going to happen next or what to do. But guess what? So is your autistic child! Your little one is just as exhausted and scared and confused as you are (maybe even more so).
I think one of the main reasons neurotypical parents have such a difficult time raising neurodivergent children is because they try (sometimes without even realizing it) to get their children to do, talk, act, and think like them.
I understand that this approach is mostly based on wanting what is best for your child. After all, you don’t want to see them hurt or bullied, and you want them to be happy and successful in life.
But here’s what you’re missing: You and your child are speaking two different languages, and you cannot understand each other.
This means you don’t even have the basic building blocks to even BEGIN to communicate with and understand each other, and this is what’s causing the battles.
Parents Are Taught How to Make Their Child Appear Neurotypical
When a child is given an autism diagnosis, parents are simply told that their child is different. Directly or indirectly, parents are guided to do all they can to make the child “passable” as a neurotypical as much possible in order for them to succeed in life.
However, parents aren’t taught the most critical thing.
They are not taught what their child is experiencing and how the child perceives the world. If this were part of the “toolkit” given to parents of autistic children from the start, open communication between neurotypes would be possible without anyone having to change!
After all, how can you successfully teach someone if you don’t even speak the same language?
Ask Adult Autistic People
Parents, it’s not fair to you that you’re not given the proper tools to learn how to communicate with your autistic child and help them better navigate and understand their world (and yours). Also, it’s not your fault. Your doctor may have scared the hell out of you when your child first received their diagnosis, and you’ve been floundering ever since.
So, since your doctor isn’t going to be very helpful, ask us! Adult autistic people are an invaluable, widely untapped resource for information about autistic children. Why? Because we used to be autistic children!
Plus we were there on the front lines when autism was thought of as a “disease” that only boys got, and this neurology was almost always associated with a near-complete lack of ability on the part of the autistic person to understand and communicate.
Which means those who did have the diagnosis were wrongly treated as though they were incapable, when they just didn’t fit into the neurotypical paradigm, and people like me, a late-diagnosed female autistic, were just written off and punished for “acting weird on purpose”!
We couldn’t win, and we have the scars to show it– and believe us, we do not want your children to experience the same horrors!
Learn How to Work With Your Children, Not Against Them
When you talk with autistic adults who are open to the idea of helping you navigate the autistic world (not all of us can do it, but there are some who do, like me), you will learn how and why your child does, says, or reacts to things the way they do. You’ll understand the autistic mind and our neurology, and come to understand it as a language that is simply different from your own.
Having this perspective will help you to stop unwittingly working against your child by trying so desperately to have them think, talk, and act like a neurotypical person. You won’t get angry as easily, because you’ll stop ascribing neurotypical intentions to your autistic child.
Here’s one example of what I mean by ascribing neurotypical intentions:
An autistic child may jump and startle easily because you walked into a room unexpectedly. This may make you think that they did something against the rules that they are now trying to hide.
When you confront them about it, the autistic child may be unable to speak, or start stammering and moving their eyes around all over the place.
For a neurotypical child, these behaviors might be a sign of guilt, but for an autistic, they are a sign of fear and confusion.
Their routine has just been interrupted, and they didn’t see you standing there. Now, because their nervous system literally won’t let them, they can’t convey this information to you verbally, and the frustration, coupled with your accusations, might cause a meltdown and further alienate you from your own child. Trust will be lost on both sides from a simple misunderstanding.
That is just one example of hundreds of ways that an autistic person will speak, act, and behave in a way that means something completely different for us from how it would for a neurotypical person.
Again, it is essentially a different language, and we autistic adults are fluent in it. So, please, where we are available, ask us questions. Most of us are pretty blunt and forthright, and we will explain to you what’s happening from your child’s perspective.
Parenting your autistic child doesn’t have to be a battle, and it doesn’t have to be so draining.
Once you learn how to speak our language, you can teach your child to understand your language (neurotypical behaviors and motivations), and you’ll eventually both be on a more level playing field.
And on a level playing field, battles stop and healing begins.
Editor’s note: There is a Facebook group named, “NeuroClastic has an article for that,” where many of our contributors are available to answer your questions. It is open to autistic and non-autistic people and provides a safe space to ask questions and seek feedback.
- Could Student-Focused Learning Help Neurodivergent Learners Get a Better Education? - January 19, 2020
- Don’t Confront Your Autistic Loved One About Concerning Behavior… Investigate Instead - December 9, 2019
- Why We Need to Start Treating “Autistic” As Another Language Instead of a Condition - November 16, 2019
My son, age 14, has just been diagnosed with ASD (more specifically, Asperger’s). He is so much like me that I never recognised anything unusual about him until his school intervened. I understood why he failed to participate and engage in lessons, was frequently non-verbal and absorbed by repetitive activities, taking his pens apart and folding paper into interesting geometric shapes. Perhaps I am on the spectrum too.
My other son (age 10) is not diagnosed but has meltdowns, sensory sensitivities and fixates on routines, but school have no concerns as he masks these things at school in order to conform. He is more difficult because of his violent meltdowns and anxieties, which I feel are worse because he struggles with the pressure to conform. I wonder how I can support him and whether I should seek a diagnosis.. In the past it has been very difficult because at times he has been violent towards me. I understand now that I must back off, try to stay calm, and reduce sensory input, which has really helped.
Hi, Liz. My first instinct is to fight for a diagnosis for your youngest. Once he gets bigger, it’s going to be harder and harder to avoid him hurting you, and he needs tools to regulate his emotions now.
Wonderful article, Jaime! As a parent, it’s imperative that we continue learning more about how to communicate with our children. It’s hard when other people disagree with you about how to handle a situation. Our son is 12. The most difficult thing right now is how to best cope and help when he is angry that he’s been asked to do something or when questioned about specifics on things. It’s an immediate rage along with angry eyes, posture and gestures. I know not to ask him to do something when in the middle of a preferred activity – at least without time warnings (we need to leave in 10 minutes, so you need to pause or end what you are doing). But if asked to not slam the refrigerator door, or push our chairs under the dining room table as we are going to sit down (believe this is a need for order and symmetry)…he flies into the danger zone. He does not see the reasoning behind these requests. Thoughts? Thank you so much for being another voice full of wisdom.
Hi, Cheryl. Thank you for your comment. I’m not entirely sure how to help you, but I did create a post on my Facebook page that may be of assistance. It’s a chance for neurotypical people to ask questions and advice of autistic people. Here is the link: https://www.facebook.com/pg/thearticulateautistic/posts/ (I’ve pinned that particular post to the top of the page.)
Thank for a very explicit blog on something that I dealt with as a Scout Leader!
The young lad came on in leaps and bounds and mostly joined in with the others! Sometimes he had a strop when the team he was in did not win but after a chat with him explaining that it was the taking part and enjoying that was the important thing and that winning was a bonus!
I lost touch with him for about 15 years but met up in Church about a year ago! I did not recognize him, but he remembered me, hugged me and said that being in the Scout Group was one of the best things he had ever done!
That’s wonderful! See? One person really can make a difference. 😉
Thank you so much for your article. I found out about being ‘on the spectrum ‘ when I was 42, 19 years ago. Two of my children were diagnosed as well.
This website is such a blessing because it confirms everything I’ve had to learn on my own. We really do think and process in a different language and life has been better since I’ve been telling people I’m on the spectrum and how I have to translate into their language. I know when I’m way over my limit of contact when my words don’t come out right. I kind of mix both languages together.
And you’re right. I would love to help people learn how interpret what we are saying/doing.
Thank you so much for this comment. I’ve had to learn all of this mostly on my own, as well. I would definitely like to help other autistic people not have to go through what I did.
I think it’s going to naturally be hard whenever a parent and child have very different types of brains. The goal isn’t to change or blame one of the people, but to help them both learn to understand each other. The parent, being the adult in the situation, will probably need to shoulder the most work.
That’s difficult, especially if you’re non-autistic and not used to understanding autistic minds. You’re used to sailing through a world in which almost everyone is a lot like you. (Autistic parents usually have 20+ years of practice figuring out how non-autistic brains work… whereas a non-autistic parent might have zero experience understanding autistic people when they have their kid. That’s a lot of catch-up work.)
I wrote a short story for parents inspired by this post: https://misslunarose.home.blog/2019/08/08/fidos-kitten/
And if any parents are confused about what their child’s body language means, here’s something to help: https://www.wikihow.com/Interpret-Autistic-Body-Language
Another great article. Thank you for being an autistic us mamas can follow and reach out to when we have questions.
One big thing we are currently struggling with is self-motivation to learn, particularly at school. I am looking for ways to help teach him the basics (reading and math), but it seems the school’s use of a task board for a toy is the only way he is motivated (9, non-speaking). At home we don’t use motivators we just let him know that X,Y, or Z are tasks we need to complete, and we get them done. He is very hands-on (physical/visual learner), so that is something we are hoping to utilize at school. What has helped you or others you know develop self-motivation?
You’re welcome. Ah, self-motivation! The very topic I talked about today on my Facebook page. Come find me at Jaime A. Heidel – The Articulate Autistic, and join the discussion! 🙂