Parents of Autistic Children – Yes, It’s Hard, But Here’s What Can Make It Easier5 min read

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, “The Aspergian 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.

14 Comments

  1. 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.

    1. Author

      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.

  2. 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.

    1. Author

      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.)

  3. 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!

    1. Author

      That’s won­derful! See? One person really can make a dif­fer­ence. 😉

  4. 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.

    1. Author

      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.

  5. 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

  6. 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?

    1. Author

      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! 🙂



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