How My Parents Handled My Autism and How They Set A Good Example8 min read

Whenever the sub­ject of autism is brought up, it is inevitable that the par­ents will be dis­cussed– or often times, will be the people to bring it up. I am nowhere near ready to be one myself, if ever, but I do know how I would prefer my par­ents to talk about me or how any­one’s par­ents should talk about their kids for that matter.

I also know how I would prefer to be treated. I am for­tu­nate enough to have had loving par­ents who always knew what I wanted and needed. They some­times sought out advice but they didn’t blindly listen to every­thing they were rec­om­mended.

The early years seem to always be espe­cially rough for an autistic child as they are get­ting diag­nosed and tons of dif­ferent inter­ven­tions are being pushed onto them and their par­ents. Other par­ents of autistic chil­dren seem to have tons of ideas as to how to handle us, too; but a lot of the time, their atti­tudes and actions are harmful and can have the effect of causing trau­matic expe­ri­ences for autis­tics in child­hood.

I have no doubt that being any­one’s parent is a dif­fi­cult job with very little, if any, “time off,” but there are things many self-proclaimed “Autism Parents” do that make the autistic com­mu­nity cringe– including calling them­selves “autism par­ents” as if the autism is about them. What’s even more annoying is that when autistic people try to edu­cate them, the par­ents shoot back with the all-too-common, “You’re not my kid!” Or, even more damning, “You don’t speak for the severely autistic!”

I get that it can be hard to trust com­plete strangers on the internet, but I think that most of the time autistic people who con­front martyr and war­rior par­ents are simply trying to edu­cate. We might some­times come off as aggres­sive, but think about the ableism that we have to endure on a daily basis. Think about how frus­trating it is to see people talk about us like we are a burden, a tragedy, a puzzle piece, about how to best “treat” us, what Hollywood thinks we look and act like, and I think you would realize that trying be to polite isn’t exactly easy.

So, what exactly did my par­ents do that was so great and exem­plary? Here are the best things they did to truly sup­port me:

They were skep­tical of the infor­ma­tion they encoun­tered

When I was first being diag­nosed, my par­ents looked at mul­tiple sources and opin­ions. This was back in the early 2000s, so things were a bit dif­ferent than they are now. The autistic com­mu­nity was in its infancy, and prob­ably wasn’t in the public eye yet (and we still kind of aren’t), so it’s not like they thought to find autistic people in online forums to inquire about lived expe­ri­ence.

I was diag­nosed right before Autism Speaks was formed. I’m pretty sure my par­ents would’ve been skep­tical of their infor­ma­tion regard­less, espe­cially since they had anti-vaxxer roots, but this also means they weren’t handed that ter­rible 100 Day Kit like many fam­i­lies are nowa­days. My par­ents were, how­ever, sold a tragedy nar­ra­tive by a child psy­chol­o­gist who pre­sumed incom­pe­tence.

There weren’t many child psy­chol­o­gists avail­able in the state of Georgia at the time. This psy­chol­o­gist told my par­ents that I would never make it into col­lege, and that I would most likely be in a seg­re­gated spe­cial edu­ca­tion class until I aged out of high school– both things that turned out to be wrong.

My par­ents saw this guy for a little while, and he tried some kind of early inter­ven­tion treat­ment on me that I don’t remember very well. According to my par­ents, I did not like what he was doing to me. He had me do some repet­i­tive boring tasks that I would only com­plete to get my reward, which was playing with toys. I appar­ently even got smart with the psy­chol­o­gist and was able to fool him like the sassy young self-advocate I was.

My par­ents saw that I was not enjoying what was being done to me, not truly devel­oping impor­tant life skills, and that this psy­chol­o­gist was not to be trusted. They stopped seeing him. Now he was allegedly really old, so he could’ve simply been a product of his time. It doesn’t excuse the hor­rible things he said about me and how he tried to manip­u­late me. I, along with my par­ents, thank­fully saw past the bull­shit he was ped­dling and got out of there.

Many par­ents are also rec­om­mended quack treat­ments such as chela­tion, which my par­ents would have never gone for had it been rec­om­mended to them. While I’m not entirely sure that this psy­chol­o­gist tried to do full ABA on me, espe­cially since this wasn’t 20–40 hours per week, he cer­tainly applied some behav­iorist prin­ci­ples.

If my par­ents had done what other par­ents of autistic kids are pushed to do, they would have lis­tened to this doctor, no ques­tions asked, and would have put me through this monot­o­nous inter­ven­tion because it was sup­pos­edly “for my own good.”

To put it quite simply: No, it wasn’t.

I know that now, and I knew that when I was a child. Being a doctor does not auto­mat­i­cally mean someone knows what’s best for everyone and are the most reli­able person to con­sult about any and every­thing health-related. I men­tioned this in my last article.

I ended up doing Occupational Therapy with a great OT who cer­tainly pre­sumed com­pe­tence. I did a lot of fun things to help develop my motor skills such as finding items under a ball of clay that we called “hidden trea­sure,” scootering across a hallway, making a sock puppet that sadly didn’t sur­vive the cre­ation process (rest in peace, Socky), and prac­ticing doing and undoing but­tons by “putting the cookie in the mouth.”

I smile every time I think about my OT expe­ri­ence and des­per­ately want to find my Occupational Therapist and thank her for her ser­vice.

They did not make every­thing they did about my autism and pub­li­cize my most vul­ner­able moments.

One trend I notice from a lot of parent advo­cates is that they seem to make every­thing about autism and claim to be “their child’s voice,” when all they are doing is talking over them. This unfor­tu­nately some­times per­sists into the autistic child’s ado­les­cence and even adult­hood. They boast on their social media about how they are an “autism mom/dad.”

They often have shirts and bumper stickers with puzzle pieces on them that say things like, “I love someone with autism,” and share a bunch of memes about either how hard they have it or other stig­ma­tizing and infan­tilizing canards about autistic people. Basically, they make it all about them and not their kid, iron­i­cally enough.

Really think about it– a lot of the argu­ments martyr par­ents make on the internet share a par­tic­ular word. Let’s see…“you’re not like MY child,” “MY ABA is not abu­sive,” “am MY child’s voice.” Notice some­thing? They make it all about them­selves. It’s me, me, me.

While my par­ents did advo­cate for me when I was younger, they still allowed me to live my child­hood. They didn’t unnec­es­sarily censor any­thing from me (though I under­stand that has nothing to do with autism specif­i­cally– they just had a more lenient par­enting style when it came to what I was allowed to watch and play), but at the same time, they were par­ents and had rules and bound­aries for me.

They are sup­portive and respon­sive to my needs while still having ground rules. My par­ents don’t spoil me, but they also aren’t overly pro­tec­tive or restric­tive. When I see chan­nels like Fathering Autism, it makes me sick. He is the dad of a thir­teen year-old non-speaking autistic girl and treats her like she is a child and pub­li­cizes every­thing he does with her.

I can tell his daughter wants to just be free of all the restric­tive things he does to her and how he and her family mem­bers talk about and over her con­stantly. He is making the entire thing about him, and it is all self-promotion. If you are a parent of someone who is autistic, no matter where on the spec­trum they are, don’t make such a big fuss about it. Just be there for your kid and uplift them as best as you can.

They focused on doing things that made me com­fort­able and happy

Most impor­tantly, and really the big take­away from all of this, is that every­thing my par­ents did for me in my for­ma­tive years had my com­fort and hap­pi­ness at the fore­front of their thoughts. I am not denying that most par­ents have this mindset. It’s just that how they go about it can some­times be more along the lines of “It’s for their own good,” rather than, “It is some­thing that actu­ally makes them com­fort­able in their own skin.”

Now, I could write a whole other article about dif­ferent par­enting styles, how a par­ent’s upbringing affects their style, and how a lot of par­ents get their kids to believe cer­tain things, and some of that comes from reli­gious beliefs. I don’t want to get into that here. If there was a food I did not like, most likely for sen­sory rea­sons, they didn’t force me to eat it. They didn’t and still don’t let me eat any­thing I want, because that would be irre­spon­sible of them, but they are respon­sive to my dietary pref­er­ences while still encour­aging me to main­tain a healthy diet.

If there was some­thing a ther­a­pist did to me that they knew I wasn’t enjoying, they pulled me from it. Part of that may be because I was so non-compliant to things I knew I didn’t like from an early age onward, but I’m sure a lot of other fellow autistic people are like this, too, yet were forced to do cer­tain things to please their par­ents. They sug­gest things to me and encourage me to try new things every now and then, but nothing is or has ever been forced onto me.

The Takeaway

So to wrap things up, I have excel­lent par­ents who raised me right, and who have played a role in helping me become the self-advocate that I cur­rently am. They did this by pri­or­i­tizing my own com­fort, not speaking over me, and never forcing me to do any­thing not within reason. I realize par­enting is a very com­plex topic, and there are many rea­sons why other par­ents may be stricter and have dif­ferent rules and reg­u­la­tions.

I am not saying my par­ents are per­fect, in fact, my father in par­tic­ular made a lot of dis­ci­pli­nary mis­takes regarding my autism when I was younger, but he has since learned his lesson and con­tinues to learn more. He and my mom are willing to listen to me, and though they do not under­stand or agree with every­thing I tell them, they try their best not to speak over me and make it about them. They make autism about me, and not about their own iden­ti­ties.

 

 

5 Comments

  1. That’s what my Mum did to me„ She’d have me crying a the dinner table, listing ALL my ‘faults’ and then saying we are only trying to help you! 🙁 At the same time of course, telling me how ugly I was when I cried 🙁
    As I got older I had the nous to retort ‘I KNOW what’s wrong with me, I want to know what is right!’ But even that didn’t stop her 🙁
    Give her her due though — She was also ‘Aspergers’, though it wasn’t called that I those days. As adults my sis­ters and I had to find out the NICE things she said about our own kids, because she only ever told us about how won­derful our sis­ters’ kids were,

    1. I’m 47 years old now, diag­nosed about 5 years ago. Thank you for that retort, ‘I KNOW what’s wrong with me, I want to know what is right!’ I’m using that one from now on if you don’t mind. And even though I do not know you, I would like to tell you you are beau­tiful and you are a won­derful person. Do not let anyone tell you that you are not.

    2. Author

      I’m sorry to hear that hap­pened. It’s inter­esting that your mom was also autistic and she didn’t even know it. It seems to happen to a lot of par­ents.

    3. I’m sorry to hear your mom treated you that way. It’s not okay and she should have known better.


Talk to us... what are you thinking?