Thursday, June 26, 2014

Misconceptions about Discipline and Autism

There are a lot of misconceptions floating around out there about individuals on the autism spectrum.

Sometimes it seems odd (to me) to be writing about them here because I'm not an authority on the subject.  Over the years I've tried out various hats in the blog arena but I would say that as the years have rolled along it's become more and more clear that I'm a mom blogger like thousands of other mom bloggers out there.
Besides, my daughter hasn't even had her diagnosis for a year.

It was a year ago this month that I first began to face some of my concerns, that I first filled out and filed paperwork through the state with my local school district for testing (who, by the way, still hasn't contacted me to set up testing, despite their letters promising that I'd hear from them in September of 2013).  Thankfully, in September her doctor recognized that something was going on and immediately ordered further testing for her.  The answers quite suddenly began to pour in, in the form of report after report and those results became increasingly less shocking simply by virtue of their consistency.

Maybe I'm getting ahead of myself though.  I began writing about how I don't really feel qualified to write about autism... and yet it's a frequent topic here because it's a big part of our lives. And more than ever tonight I feel compelled to write about a specific facet of the misunderstandings that abound when discussing life on the spectrum, after receiving a comment in the comment box that in some ways perfectly expressed some of the most popular and common misconception that are out there.  In many ways I'm very thankful that the comment was anonymous, because I don't want to single anyone out, and yet I think it's important that the topic be addressed because it's a thread I've seen running through so many conversations involving autism and especially autistic children.

The comment basically expressed surprise that Mae isn't potty trained yet, since she's three.  When I responded that I doubted the reader was a regular reader (because I did assume that the commenter didn't know she was on the spectrum) and the commenter responded that they have read the blog and that they knew through my writing how smart Mae is and that if I "put my foot down" and gave her a "swat on the tush or time out" she'd be trained in two days.

The hormonal and pregnant mama bear in me may have made a brief (or not so brief) appearance at the words " Don't let her play you she is not a dumb girl! And it is beneath her dignity as a Christian to soil herself at such an old age." but then I reminded myself of the reason that I have blogged so openly about our journey since her diagnosis.  

I'd like to shine a little bit of light on misconceptions just like this one and so I sat back and took a deep breath and tried to gather together all that I learned in the last nine months since I began reading everything that I could get my hands on about life on the spectrum.

I'd say that one of the most popular misconceptions out there is that through incredible discipline (or even corporal punishment) a child on the spectrum can be made to act like a neurotypical child.  There's a strong belief from many out there that if you just spank an autistic child or guide them in a firm enough manner you'll somehow squeeze the autism out of them.  This expectation is probably especially strong in the many cases where the person on the spectrum does clearly demonstrate their intelligence in other ways.  After all, if they're that smart, they should be able to control these other aspects of their lives that often seem so out of control.  

However, when you begin reading the writings of autistic adults it becomes instantly clear how false these ideas are.  I've read writers who describe the difficulty of controlling their bodies, the reality of having every nerve overloaded and working to control that surpluss of information, and who speak of the incredible effort it takes just to take control of the many sensory messages that their bodies are receiving and mold that information and force their thoughts into actions or words that would very likely be simple for a neurotypical person.  

My words describing their experiences fall short, and I'm sure there are many out there who could express it so much more clearly and eloquently than I'm doing right now, so bear with me.  Or better yet read autistic bloggers (if you check out my blog roll listed at the top there's a section with autism blogs).  Read about their struggles in their own words if you're at all interested in understanding life on the spectrum.  That is absolutely the best place to start.

In reality, parents of kids on the spectrum will likely wince, either internally or externally when they hear the claim that it's mostly a matter of discipline, because they know that that simply isn't the case.  And honestly if you've really spent any time with a child with autism the idea becomes patently ridiculous.  If you've watched your child struggle to find a word, a simple easy word to ask for something (and likely come up with nothing) and dissolve into tears of frustration because they can't express themselves, you know that what's going on goes far beyond simple discipline and determination. 

Unless of course you believe that there are many individuals out there simply pretending to have a disability because... it's fun?  I think we can all agree that's not it and that these challenges are very, very real.  There are brilliant non-verbal autistics, there are intelligent individuals who express themselves amazingly with the assistance of technology, and there brilliant individuals who will never be able to live on their own (often these categories overlap) and that is not because navigating in a world where so many of our interactions are based on spoken words is so pleasant that they just decided to go that route.  

I've heard a few people compare the difference between an autistic brain and a neurotypical brain as a difference in operating systems.  When I watch my children play it's clear that Mae's brain is not wired quite the same way as Patch's, although it does seem to be slightly closer in many ways to her big sister.  Things that are easy for Patch are harder for her, despite the two years she has on him.  Perhaps one of the most amazing things I've noticed lately is watching her watch him master something and then watching her go over and try to copy his movements, which at nineteen months are already often easier for him to control than they are for her.  

To put it in another way, the things Mae has been working on mastering include actions as simple as reaching across her body (crossing the midline) to pick something up.  This week she was also working on taking the cap off of a marker and on drawing horizontal lines (vertical lines are easy, but horizontal lines?  Not so much...).  

Things that may seem so simple to many people out there, are tasks that she is diligently working on mastering after hours after therapy.  Most of us probably can't imagine spending nine months in therapy, six days a week and still struggling to reach across our body to pick something up.  So intelligence doesn't necessarily mean that everything is going to be easy peasy. 

Brains, even neurotypical brains, don't necessarily work uniformly. Being a math genius doesn't mean you'll be a brilliant writer.  And having a passion for putting puzzles together doesn't mean that a child has the bladder control, or the mental space to master that task, while simultaneously processing a sensory overloaded world.

I imagine Paul would laugh and roll his eyes if he heard it implied that I was lax on discipline.  I tend to run a pretty tight ship around here.  If I have a concern in the discipline area it's likely that I'm too strict.  Maybe we can say that it's just my INTJ personality creating order in a world of toddlers and meltdowns.  And interestingly enough none of that has changed a thing about the neurology of Mae's brain.  I do know that Mae has made me more patient and understanding.... both things that I most certainly needed and have benefited from.  

That doesn't mean, however that over the years Mae has spent plenty of time in "time out."  It's actually her refuge.  It's where she goes when she's so overloaded that she can't handle the sights and sounds of the worlds.  Sometimes she cries and demands to be put in time out and I sigh and hold her hand and lead her up to her room, where she quickly closes the door and curls up in her bed and blocks out the too busy world.  

By the world's standards I've been changing diapers for a while (six years now without a break... and let's face it, that's stretching on into the undefined future... which I suspect is filled with diapers galore.).  Yet I don't think I'm the one who has the greater of the challenges here.  Changing diapers for a little bit longer than the norm hasn't killed me yet, and I'm fairly sure that it isn't going to.  

In fact, I suspect that it might be good for my soul.  Serving those who need it in this basic way and not pushing a child to her detriment because I imagine something would be more convenient for me is, I can't help but thinking, very much a part of this path that I'm stumbling and tripping down.  

My job, is to help her guide her through the challenges that she'll face, just as I strive to do with my other children.  My job isn't to shame her when she doesn't hit a milestone in a socially acceptable amount of time.  It's to be there for her when she triumphs and to hold her hand and help her when she needs me.  
No, I won't be telling her that any facet of her amazing little self, with her particular brand of challenges, is somehow below her "Christian dignity."  After all I very much believe that she was created with this neurology and that it is very much a part of her journey on this Earth.  I don't believe it's a mistake or that her struggles are somehow shameful.  Instead her struggles make days like today, and make moments that might seem small and inconsequential to others, like using the potty for the first time, into triumphs.  And if there's one thing that having a child on the spectrum has taught me, it is that life is so much sweeter with these tiny triumphs, that may seem absolutely ordinary to the outside world, popping up at every turn.  


  1. Sorry I wrote those things. I didn't realize. A lot of parents these days let the kids dictate when they will train which is a big mistake, but I now see where you are coming from. Again I apologize for insulting you. It sounds like you do keep your kids in line and are doing all you can for a complicated situation. I wish you success in potty training and otherwise. Thank you for sharing this info honestly some kids I know with autism I did feel their parents let them get away with murder but now I see maybe they are doing the best they can.

  2. One of the reasons that I decided to take my daugther to a psyquiatrist at five yo was that she did not respond to disciplne. Discipline works when the child can control his/her behavior. The child has an experience of time out or beying deprived of a privilege (that's discipline in this house) and doesn't like it. When the next time the child is warned, s/he remembers the consequence and makes an effort to behave. My daugther remembered the consequence but was unable to control her behavior through effort and suffered terribly in the process.
    One thing that backseat parents often overlook is the suffering of our children. Spoilt children pretend their drama, children with disabilities or mental illness suffer terribly and our first goal as parents, IMO, is to lessen their suffering first, find ways for them to behave with others second. Usually these go hand in hand.
    I refer all backseat parents to my child's psyquiatrist, encouraging them to tell her, not me. Things deemed worthy of telling a silly mother who is being taken on my her daughter are usually not told to the smartly dressed professional with the title on the wall.
    Sending you lots of courage,

  3. Thank you for this post! It is so beautiful to see true parenting with compassion.

  4. Thank you so much for your comment anonymous, and truly that is why I blog about it... because before going through this with Mae I really couldn't understand it and likely would have had some of the same thoughts... having her has totally changed so much of what I thought I knew, but I can definitely understand how it can be hard to understand from the outside! Thank you for your comment!

  5. Good grief! My daughter is 2 1/2 and she's not showing any signs of interest in potty training. I have no plans at all of starting it anytime soon. When she's ready, we'll go for it, until then I'm not concerned in the slightest. I'm pretty sure this isn't going to be a salvation issue for my child OR yours so I don't see the point in stressing about it. ((HUG)) You are a great mama and you love your kids! Good job!!

  6. I swear the more I read your blog the more I'm convinced my daughter has a mild form of autism. She is 15 now, and honestly - I was just (I'll be honest here...." complaining again about how consequences have little meaning for her, and how something great to work for that she wants doesn't do much to change behaviors. She runs in circles EVERY. SINGLE. DAY in her own world, and a anxiety? She is a poster girl for it, and is on medication. That's not all... but I feel like I've telling a whole roster of professionals for years that she isn't quite normal, but no one really listens because she can seem quite normal - especially to those who have just met her.

  7. My son was four. He is neurotypical (as far as I can tell). He also lived in three different places and his dad is often away. Some kids are dealing with a lot of things on their plate.

    There is a huge difference between trying and not trying at all. I think people think that parents are lazy or children are bad.

    There is nothing wrong with taking a little longer to learn something.

    And it isn't beneath someone's dignity to soil themselves. Sometimes crap happens. As an adult, I've had a few accidents that I had no control over. Let's just say vaginal childbirth changes everything. Would you call it beneath my Christian dignity? Or say that I am stubborn? Sheesh.

  8. Of my 5 daughters, 4 trained a little after 2 with no drama. DD #4 at 2 yrs fought and screamed anytime we took her near a toilet. She finally trained at 3.75. It took a whole Summer, not a weekend. This same child walked at 7 months, read fluently at 4 but couldn't control a pencil enough to write or color until nearly 8. She is generally a serious, compliant child but suffers from great anxiety. She spends more time than any 9 yr old should feeling the weight of her sinfulness, so I can't believe this was a discipline issue.
    And on the point of the theology, if we as Catholics believe that people are not suffering from total depravity(as protestants do), and are incapable of personal sin until around 7, how can a child of 2 or 3 be expected to not be respecting their Christian dignity?
    And.. I am sorry I provoked a blog post in the past too. I was judging by the way people treat people in our parish which is so different than you described your experience. I am praying that where ever your husband lands in his first law job, the parish folds you up in love and care and support in the way they should.

  9. Good for you niece! Well said!
    And I just want to add...I had a 2 year old in diapers when we got our daughter with an ostomy. Then we had more surgeries and skin care with her. I did not worry about my neurotypical 2 year old and had 2 in diapers. Somewhere in the late 3 year old/4 year old age he said I want to use the big potty. And from that day on he did. No training, no little potty, nothing. While everyone can't wait that long because of child care and such, I do believe we push too hard sometimes.
    But again, very good post.

  10. I work with three year olds for a living and have been working at the same place for 12 years. Many neurotypical three year olds are not ready to potty train yet. I have a cute story though about a child in my class last year who we later found out was on the spectrum as wel. He was not potty trained and was not interested in potty training. Well, his mother kept putting pull ups on him. One day I noticed that he HATED to get wet so I got an idea to try letting him wear underwear to school. Well, we gave him Cheezits as a reward if he peepeed in the potty. After getting himself wet one time, he used the potty after that. LOL. Of course this wouldn't work with every child but it just shows that sometimes we have to be creative and think outside the box with certain children. One size certainly does not fit all. Good Luck in your adventures!

  11. Sorry, not on topic, but I wasn't sure where else to post it...

    Just so you know, in a stroke of what must be *the* most misdirected marketing I have ever seen, the mobile version of your blog is currently running banner ads for (drumroll, please) Planned Parenthood.

    Thought you'd want to know. It did give me quite a giggle--I mean, seriously?! Talk about target audiences, or, more accurately, whatever the complete opposite of target audiences are--but...yeah... :p


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