Please don’t say “Autism Mom / Dad / Parent” for attention

(Beginning Note: please know that if you’re reading this, it totally doesn’t apply to you 🙂 and thus, please try not to take offense, as this post is not meant to apply to all parents of autistic children, nor is it even intended for all parents who refer to themselves as “Autism Moms/Dads/Parents”.  The overwhelming majority of parents of autistic kids (even a great many of those who have assumed the moniker of Autism Mom/Dad/Parent) are awesome.  This post is only directed toward those who turn this Autism Mom/Dad/Parent label into the trademark of an attention-seeking crusade.  You probably know the type.  Whether or not you’re familiar with this type already, you’ll see what I mean.  If you call yourself an Autism Mom/Dad/Parent with benign or even endearing intentions, that’s cool with me.  This post is directed toward those who do it for attention, similar to my other posts along this vein.) 🙂

(Potential Content Advisory: this post uses terminology that describes the conventional perspective; typically (although not always), these terms are generally put in quote marks to reiterate the fact that I don’t endorse these terms, nor do I share these perceptions.)

For the longest time, I wasn’t entirely sure why the term “Autism Mom” (or “Autism Dad” or “Autism Parent”) always made me squirm a little.

After some pondering and word-finding, I think I might have (at least part of) it figured out.

A mom is a mom; a dad is a dad; a parent is a parent.

Sounds pretty simple, right?  I don’t even have to attribute the straightforwardness (aka “bluntness”) to my Asperger’s/autistic nature, because the concept really is just that straightforward.

By injecting the word “Autism” into (and before) the parent-terms, the attempt is to get the attention of the other person, whomever they’re addressing.  Suddenly, they’re not “just” a mom/dad/parent anymore, they’re a “special” parent, a parent who is somehow different from the rest, one who is looking for something extra.

My guess is that they may feel like they deserve something extra for all their hard work, day in and day out.  After all, they’re “putting up with” meltdowns, therapy appointments, and messes.  They’re “coping with” the (perceived) “lacks” of milestones and connection/communication/interaction.  They’re grieving over the (assumed, supposed) “lost dreams”, the “theft” of their children, and the now-pipe-dream of a “normal” life.

Parenting is often a thankless job.  Kids don’t just wake up every day and say “thank you for all your hard work today”, and the general public sure doesn’t think twice, either; I don’t know if any parent has ever been thanked for bringing their children into the world.

And if parenting itself wasn’t challenging enough, try raising a child with a different neurotype.  The operating systems are totally different.  Attempts to communicate might not be recognized (a phenomenon that occurs both ways).  There might be behaviors that are not well-understood.

I get all that.  Really, I do.

A subset of parents may subconsciously protest, “what about me?”

Parenting is giving and giving, without getting much in return.  I hate to say it, but: that’s the nature of parenting; it’s not all Kodak moments and rainbows and glitter and soft innocent slumber and squeals of joy.

It’s day-to-day tough stuff.  The messes, the arguments, the struggles, the skinned knees, the coddling, the accommodation, the soothing.

It’s all part of the package.  A package to which sometimes I wonder if this parental subset ever gave serious consideration.

This is the reality of parenting, whether the child is on the Asperger’s/autism spectrum or not.

Another aspect of parenting is that when considering the decision to have children, one must be prepared for anything.  Never assume anything, because the future is the future, and tomorrow isn’t ours yet.

Giving birth is the only consistent identifiable factor gathered so far during this insatiable quest for the causes of autism.  Everything else is a crap shoot.  Everyone takes their chances.

So the parents of autistic children rolled the Autism Dice.  Those dice have been cast; there is no do-over; genetic mingling between sperm and egg does not come with spellcheck or an edit button.  When anyone makes a decision of any kind, they get what they get, and that also applies to having children.

I’m not trying to be insensitive here; if anyone is looking for someone or something to blame for whatever it is that they may be dissatisfied with, point to nature itself; I’m just the messenger.

For many parents within this subset, I reckon there’s a feeling of having been “screwed”, of having been stolen from. 

But here’s the thing: there was nothing to take, because as I mentioned, the future doesn’t belong to us yet.  It isn’t ours to claim.  Any point in time is only ours when it actually arrives.

Whoever is born must be parented; having a child who is different is no different; the job description remains the same.  There is no extra recognition, there are no extra gold stars, simply for proceeding to raise the child one brought into this world, even if the child is different from the parent in a significant way.

The injection of the term “Autism” before that of “Mom/Dad/Parent” is, the way I see it, simply an attempt to shine the spotlight on themselves, an attempt to gain the recognition and extra kudos for the extra (perceived? Actual?) work that goes into raising a child different from oneself.

It’s a natural subconscious inclination to perceive children as possessions or extensions of oneself, but that’s not how it works.  Every child is their own unique individual, their own separate person, with a separate identity.  Attempting to take that child’s identity and co-opt it for one’s own use, as this specific subset of parents tends to do, is missing the point of parenting, which is to protect the child from the outside world while guiding the child to grow into the human being they were designed to be.  Not to use the child’s difference of neurotype as a battle cry for a pat on the back or a dose of sympathy or extra credit.

I’ll take the time to point out here that it’s interesting how, despite the fact that so many autistic people have children ourselves, I haven’t seen any of these Autism Parent blogs (the autism-negative warrior type) or “The Mighty” articles about the challenges of raising autistic children being written by autistic parents. 

If we write about our children at all, it’s from a place of warmth and acceptance.  We’re not lamenting about how hard it is. 

Do we really have it easier?  Or, are we doing any less of a good job and thus, simply failing to realize how hard it “really” is?  Or, might we actually be better equipped to be parents of autistic children because there’s more of an inherent mutual understanding?

I don’t have any answers for those questions; I do suspect that because an autistic parent and their autistic child may share the same neurotype, that some aspects of raising the child likely come easier, as there is a shared neuro-oriented connection.  I absolutely do not believe that autistic parents are simply “missing something” about how challenging parenting can be.  I believe it’s possible that a parent who shares their child’s neurotype might be a more competent parent for that particular child, and perhaps a better parent-child match, but since I don’t have children myself (for both voluntary and biological reasons), I can’t comment further on this particular aspect from a firsthand perspective.

So anyway, getting back to “Autism Parent”-ing…

It appears to me that many of the warrior-type Autism Mom/Dads/Parents(TM) use the term “Autism” before their “Mom/Dad/Parental” designation to set themselves apart from the rest of the “ordinary” parents out there, who have the “privilege” of raising “normal” children.  They seem to be seeking extra recognition and extra sympathy for their extra sacrifices….

…Except that parenting itself consists of sacrifices.  That’s a major aspect of raising children.  You give of yourself, your energy, your time, your space, and just about everything else to see to it that those children develop into their own, and live their own lives, no matter who the child is or how they turned out or how the reality might differ from what you had imagined, desired, or presumed would be.

Given that conception is a crap-shoot in the first place, and that one has to be prepared for whatever curve-ball their children may toss their way, there is no extra recognition due these warrior-parents.  A parent doesn’t get to say, “we chose to have children and got carried away forming all of these assumptions and premature dreams, but we didn’t get what we wanted, so now we’re ‘suffering’, and the world needs to feel sorry for us and keep an endless steady stream of pats on the back, kudos, admiration, and sympathy coming, mmm-kay?”

I’m sorry, but It Just Doesn’t Work Like That.

Furthermore, when a parent co-opts their child’s Asperger’s/autism spectrum status for their own crusade and their own identity, there’s something warped and narcissistic about that.  As long as a parent is blogging or Mighty-writing about how “awful” autism is and how raising their autistic child is an “impossible” “nightmare”, then they’re not actually…parenting.  They’re not spending time with their child.

So how much of their time and energy is being given to their child, if the parent is spending time lamenting, snapping pictures, importing them into their media gallery, adding them to their posts, publishing said posts, responding to comments, and reading the blogs of other parents who do the same thing?  What is their child doing all this time?  Missing their mom/dad/parent, that’s what.

Those parents seem to want to make the situation All About Them.  Well, I’m sorry, but it’s not All About Them.

The last point I’d like to make about why the “Autism Mom/Dad/Parent(TM)” rubs me in a slimy way is that this “label” they’ve adopted for themselves isn’t accurate, unless the parent themselves is on the Asperger’s/autism spectrum.

If they’re not, it’s a silly term to use.  Consider an analogy: if one of these parents learned one day that their son/daughter/etc was actually gay or lesbian, they wouldn’t call themselves “Gay/Lesbian Mom/Dad/Parent”, unless the parent themselves was also gay/lesbian.  Nor would they call themselves a “Trans Parent” if their son/daughter/etc was transgender, but the parent was not.  If their child was left-handed (which was, at one point, also considered pathological), they wouldn’t call themselves “Left-Handed Mom/Dad/Parent”, either.

Why not?

Because it sounds silly, and it’s a little tacky to assume labels that don’t actually apply to you.

So why does Autism Mom/Dad/Parent get a pass?  Why is there an exception made for parents of people on the Asperger’s/autism spectrum?  Why is that so widely accepted as a battle-cry?

I wish I knew.  The best that I can figure is that nobody (in that parental subset or their sympathizers) has taken the time to connect the thought-dots that far.  The idea that this custom is silly hasn’t yet been considered.  It doesn’t sound silly to them because they never thought about it that way.

I suspect that there’s likely a large portion of Autism Moms/Dads/Parents out there who are using this terminology simply because everyone else (within that subset) has, and it seemed like The Thing to do, and so it never became a question.  It’s just as likely that this particular subset-within-a-subset of parents will consider these points and realize that what I’m saying has some merit.  It’s not these parents that this post is referring to or directed at; it’s the others who, because of their own personality and desire for attention and recognition, would probably read this post, scoff and huff, and continue doing what they’re doing.

That’s no skin off my back.  I don’t have to interact much with these people; how they live their daily lives has little-to-no bearing on the quality of mine.

But it might be (and I suspect it is) a whole different story for their children.  And it’s my concern for them that fueled this post.  ❤

***

(Image Credit: Minjae Lee)

35 Comments

  1. Autism Parent sounds like they are raising an autism, not a child. Maybe that’s how they feel. Not good for the child to learn to dislike part of themselves.🙁
    Also, giving these parents the attention they obviously crave for the “sacrifice” and the “hardships” is only one step away from excusing abuse and sometimes death of their children. Not okay!!😤
    No one gave me a gold star for raising my NT daughters and I don’t expect one for Ben.
    I’m in total agreement with you❣ Of course, I usually am😘🌹💞😎

    Liked by 5 people

    1. So so true!! **Preach It**, Sister!! 🙌🏼🙌🏼👊🏼😎🌺. Thank you so much for adding that excellent point! With the type of people we’re referring to, autism itself is the enemy, and they wind themselves up in usually-needless fear and despair. This gets out to the public, which then starts to “understand” why a parent of an autistic child might resort to abuse/murder. They might convince themselves it’s for the autistic child’s “benefit”, but of course, nobody asked them if that’s what they wanted. 😖 Not OK indeed!! 👏🏼👏🏼👏🏼💝🌷💞🐉🌟

      Liked by 1 person

  2. Yes! All parenting is hard. All children are challenging to parent.

    I suspect part of the reason that Autistic parents don’t generally write about our children in the same ways that allistic “autism” parents do is that we better understand where our children are coming from, perspective wise. We also often know what it’s like to have people assume the worst of us and then talking about their assumptions with others (often, thankfully, less publicly since there was less internet access/social media years ago).

    I grew up with my sense of self being violated, my actions discussed negatively with various people (in my case it was mainly teachers, principals, etc), and not understanding why I was being perceived negatively. Putting a negative spin on my children’s actions would only subject them to some of the hell I lived through as an un-dx Autistic child and I wouldn’t wish that on my worst enemy.

    All I ever wanted was to be understood so I try my hardest to understand all of my children – allistic and autistic alike – and assume that they’re trying their best while seeking to help support them in doing better as they grow ❤

    Liked by 5 people

    1. Thank you for sharing your perspective! I wholeheartedly agree with your suspicion about autistic parents 😊. That’s not to say that all non-autistic parents aren’t capable, too, of course; it’s just that I suspect that autistic parents of autistic children probably have a leg up, in general, simply because the neurotypes match 😉💞

      I’m so sorry that you endured what you did growing up. That sucks, and it’s hard. 💐💐 I can relate, in my own way 💞. And I love your strategy!! 👏🏼👏🏼😘

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  3. Yes!!! Thank you!!! Can’t tell you how often I encountered these people when I first set out to interact with other parents or how often they tried to lump me in with them. 😡I was quickly persona non grata, though, when I let them know I was not only NOT bemoaning my fate but that I absolutely did NOT want to be called an “autism mom” -even though as one also on the spectrum, I think I had more right to the title in a sense. 😄 I cannot abide someone who uses their child’s neurotype for their own attention. It is not only selfish and cruel, but sends an awful message to our precious kids. I wish I could get these parents to see the lasting damage they are creating. Sadly, many of them are a thick-headed lot.

    Liked by 3 people

    1. Awww that stinks, girl!! I’m so sorry that happened to you! 💐💐 What is it with people?? 😡 Are you not the same intelligent, kind, genuine person you were before they found out?? Does your status change anything about who you are?? (No!!) 😘 I agree wholeheartedly with the selfishness and how it sends seriously negative messages to their children. Ugh. I wish that if I called child protective services on them, that they’d actually do something! (They probably wouldn’t, though. Milk in the fridge? Yep. Ok, food in the cupboards? Yep. Someone watching the children? Yep. Ok, move along. No harm, no foul. = CPS’s line of thinking). 😡💝😘💓

      Liked by 1 person

      1. Thanks. ❤ I think they just couldn’t stand the thought that they could be wrong. And, yes, I have thought many times it would be great if CPS would listen about such parenting, but figure they’d reach the conclusions you described. Sigh.

        Liked by 1 person

        1. “Good old” CPS, eh? So well-intentioned. So highly exalted. And yet, so utterly crushingly bureaucratic. I can understand their hesitation; wouldn’t want to overreact or act too quickly and remove children who don’t need removing from homes that are actually loving. But some of these homes are not so loving–in fact, they can be downright toxic to the children involved. *Sigh* is right, luv! 👏🏼👏🏼🙏🏼💝

          Liked by 1 person

  4. Well, I’m not sure what I think about your post. I’ve never called myself an “autism parent or autism mom” and I’ve never run across this situation.
    I do sense an anger in your writing and I’m sensing you are trying to protect the young people with autism. I can see how that makes sense.
    On the other hand, until you have raised your own children autistic or otherwise, I can’t neccessarily agree with your opinion.
    You see, my husband and I raised two boys. The oldest was ADHD (now 32) and he was a handful to say the least. Then 11 years later, our youngest at 3 1/2 (now 24) was diagnosed w autism. There were very few resources for parents. I believe both boys have grown up to be fine men, even though there are still challenges.
    Say what you want, but parenting is really hard. If some of these parents want to tell their story to educate other parents, I’m all for it. Maybe writing is kethartic. It was for my husband when he wrote his book “Andrewtism”
    That being said, If I had to do it over, I wouldn’t change a thing. I love my boys and am grateful for them. I am also thankful for your readers and their comments. I’m always learning how I can be a better mom.

    Liked by 2 people

    1. Thank you for sharing your insight! If you never considered yourself an Autism Mom (or, more to the point, an Autism Warrior Mom), then this post is definitely not directed toward you 😊. I totally get that parenting is tough. I’ve definitely cared for enough children in my day to know what that’s like, and even though those children weren’t my own, I have an awesome imagination 😊. Plus many friends who have had kids of their own. I love kids, and I never had any of my own because I knew that my personal journey was taking me to other places. It just wasn’t in the cards for me.

      For those who are parents, and who just want the best for their kids and who love them for who they are, hats off to them. Kudos for doing it right 👏🏼👏🏼

      I agree that parents of kids whose neurotype differs from theirs definitely need resources and support. No disagreement from me on that at all.

      I can totally tell that you’re not the type of martyr parent I’m referring to in this post 😊.

      Just keep doing what you’re doing. Keep learning, keep evolving. Keep being human 😉. Your boys are more than likely lovely kids! 💖

      Liked by 1 person

      1. I have raised 3 non-autistic kids, one with ADHD, and I agree 100% with this entire post. You don’t have to have kids to know that many autism parents absolutely enjoy the attention and pity. My sister-in-law (husband’s sister) has an autistic son (11 years old) and I have tried so hard to be supportive. Our son (mine and her brother’s) is non-autistic and he is 3 months older than hers. However, I will say, in a non-politically correct manner, that I’ve just about had it with her CONSTANT posting on IG and FB about her son and I’m sick of her overall aggressive position about everything autism… and the 20 autism hashtags on EVERY post. She cannot have a conversation without saying “autism” at least 10 times. She posts DAILY, at least 5 times, about every personal aspect of her son’s life including every meltdown, every therapy session, etc.. THEN, when a non-autism parent DARES to comment, she goes ballistic… “unless you have a child with autism, do me a favor and keep your suggestions to yourself.” I’ve had to call her out on her BS several times, including when she wrote that particularly bitchy comment… I think it’s absolutely ridiculous to be such an attention [choose your verb], then to turn around and have the audacity to scold other parents for trying to help. I’m not the only one who feels this way, several of our mutual friends and family members have asked me if there is something wrong with her. I actually think it’s a form of munchausen. So glad I read your post! I wish more people had the courage to write what everybody else is thinking. Because I sometimes want to just scream… “ENOUGH ALREADY!!!” Oh, and I told her when her son was just 6 months that something was not right… I recommended that she have her son evaluated, several times. Her parents delicately suggested she have him evaluated… her response was always volatile with them (not me). My husband gave her literature regarding aspergers syndrome and she literally shouted at him that there was nothing wrong (and he is NOT someone you want to yell at under normal circumstances, but he gave her a pass). I totally get her reaction, it’s understandable. I felt bad for her. However, she refused to get a medical opinion. She didn’t have him evaluated until the elementary school made her do it. I understand that too, she was in denial. BUT THEN, years later, when the boys were about 9, I overheard her crying to one of my friends that she wishes she had had him evaluated sooner, she kept going on and on about how nobody cared… she said “BUT NO BODY TOLD ME ANYTHING… I DIDN’T KNOW there was anything wrong.” That pissed me off! So I reminded her of ALL the times she shouted her parents down, of how she threw the research back at her brother and how I HAD told her that early intervention was critical. She had no choice but to admit that she was lying… something she does very frequently! I can literally predict the outrage from autism parents, but frankly, i don’t give a [insert favorite phrase]… I’M DONE!

        Liked by 1 person

  5. I greatly appreciate this post. My nephew is Autistic, and I have never once heard either of his parents attach “Autism” to their own names/titles. Your input on the matter is highly valuable. Peace ❤

    Liked by 1 person

  6. Having an autism spectrum disorder i dont want my mom going around with a sign on her telling people. Im 22. I dont want to be looked at like i dont know or understand whats going on around me because their misconception of autistic spectrum disorders. It doesnt make me any more or less capable then any other person.

    Yes, my mom went throw some shit with me and my sister and she is super strong for it, but she isn’t going to go around telling people. You might as well put it on a billboard. Its nobodys bussniess. I dont want any special treatment when the only thing is my brain is wired different then yours.

    Liked by 1 person

    1. Yeah, my mom went through some shit with me; I was a very easy, mild child in many ways, but there were also many ways in which I could be very difficult. I’m pretty sure my mom wouldn’t have gone around talking or writing about us, even if it were known back then that we were on the spectrum (both my sister and I are Aspie/autistic, even though we’re quite different, and there are also many ways in which we’re very similar), and I respect my mom (nonautistic) for her patience, openness, and understanding. You’re totally right; it’s nobody else’s business 😊💚💙

      Like

  7. Thank you for sharing your article. I have a question for you. What would you suggest an “autism mom” call herself and others in the same situation when blogging or writing articles? What is the appropriate terms for a parent who has missed every family event (holiday, wedding etc) for the past five years because their child cannot leave the home? What do we call ourselves when we lie awake at night wondering what will happen we we are dead and gone and our child has to live in an institution – will they be abused, molested, hurt, sad, unable to understand why we left them. What about the worry the neighbors will call and report the stench coming from our trash bin because the truck only comes once a week and it only takes 3 days before it’s full of giant man diapers because our son is incontinent and we will be changing him for the next 30-40 years, or until one of us passes away. Or when we do feel brave enough to venture out into the public, and people run away like he has leprosy or some contagious disease because he flaps his arms or groans in excitement of just being out in the world. Is there a term for us parents that is socially acceptable or politically correct? I cannot find it on Google.

    Liked by 1 person

    1. Hi! Thank you so much for writing to me 😊. I can’t speak for anyone else, and I wouldn’t want to; I can only imagine myself in a similar position and try to think of what I might do. If I were the parent of an autistic child, I’d simply say “I’m a mom; my child/son/daughter is autistic.” Or, “I’m the mother of an autistic child/son/daughter.” I would probably say that even though I, too, am autistic 😊. If the situation called for it, I’d say “I’m autistic and so is my child/son/daughter.” My autism is mine, and their autism is theirs 😊💓💓

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    2. I also would like to say that I really really feel for you. Your situation does not sound easy. In fact, it sounds very challenging and often painful. I hear the worry and the love in your words. I hear you trying hard and doing your best. I hear your desperation and I respect your sacrifice, a lot 💗💗. Society is cruel and lacks understanding and I admire your strength and your voice! I also thank you very much for reading and reaching out to me 💜. Truthfully, unlike a fairly large section of my autistic peers, I’m not a passioned social justice warrior or hell-bent on political correctness 😊 (which is an attribute of mine that gets me in hot water with those of my peers who are more passionate about activism and whatnot) 😉. I do believe there is room for all genuine voices and everyone should have the right to express themselves and tell their stories. I think there are right ways and not-so-right ways to do that (and I admit that I’m far from perfect here; I’ve definitely made some mistakes), but I think in the end, we’re all just doing our best. Some have a heavier plate than others, and different situations affect different people…differently 😊.

      I’m rambling now so I’ll stop here 😉, but hopefully that made some sense 💗💗

      Like

  8. I like this post and agree with it.
    Here a differing opinion from another Autistic blogger:
    “An interesting perspective. I have to disagree. I have 3 friends with trans kids and they call themselves ‘trans moms’. To another parent I feel like it makes more sense. People who have dogs often refer to themselves as ‘dog moms’, but they themselves are not dogs.”
    from https://itstheunusualhousewife.wordpress.com/2020/07/27/when-you-have-a-friend-with-insert-hardship-here/#comment-9

    Liked by 1 person

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