Is it Asperger’s, Autism, or Just Plain Old Quirky?
This is a great title for a blog post, isn’t it? Great title.
Great. Good stuff, right here. I just wish I knew what else to write after such a great title.
This label thing can be so confusing. Don’t get me wrong—I love that my 11-year old son, Jack, is labeled. This is a good thing. It gets him services and helps me decode his mysterious behavior a little and, although the sting of having an identified child never quite disappears, the label helps me focus. It helps me move forward.
People ask me a lot if he has Asperger’s Syndrome or Autism, if he’s Pervasive-Development Disorder, or maybe just plain old quirky. I always shake my head and purse my lips so I look really important. Then I say, “Well, we just call it autism!” as if that’s a logical answer.
And to be honest, I’m not sure of the difference. So this week, I decided to do a little research, and I turned to none other than the highly esteemed Wikipedia.
(Research was never really my strength.)
Asperger syndrome is “an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction and nonverbal communication, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical (peculiar or odd) use of language are frequently reported.
Good grief.
According to Wikipedia, Autism is “a neurodevelopmental disorder characterized by impaired social interaction, verbal and non-verbal communication, and restricted and repetitive behavior. Parents usually notice signs in the first two years of their child’s life. These signs often develop gradually, though some children with autism reach their developmental milestones at a normal pace and then regress. The diagnostic criteria require that symptoms become apparent in early childhood, typically before age three.”
And Pervasive Developmental Disorder not otherwise specified (PDD-NOS) is “one of the three autism spectrum disorders and also one of the five disorders classified as a pervasive developmental disorder (PDD). According to the DSM-IV, PDD-NOS is a diagnosis that is used for “severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific PDD” or for several other disorders. PDD-NOS is often called atypical autism,[because the criteria for autistic disorder are not met, for instance because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these. Even though PDD-NOS is considered milder than typical autism, this is not always true. While some characteristics may be milder, others may be more severe.”
Yawn. I mean, really, who comes up with this stuff? Doctors? The military? NASA?
I guess you could say Jack is like an old-world recipe for spectrum disorder. He’s a little of this and a little of that, a pinch of rigidity and a dash of perseveration. He has Asperger’s repetitive nature, but he lacks the necessary language skills for that particular diagnosis. He is physically clumsy. He has low muscle tone and as he approaches adolescence, he’s becoming a little, well, squeezable.
He may or many not have atypical symptomatology. I don’t know what that is.
Wikipedia didn’t have quirky listed, so I turned to Merriam-Webster, who defines quirky as “an unusual habit or way of behaving.”
In the beginning, Jack was quirky. As a 1-year old, he had weird little behaviors; he couldn’t seem to chew even the softest food, like a banana, and he would sleep through the night for a week straight and then not sleep for days at a time.
At some point, probably around eighteen months, “quirky” gave way to “Houston, we have a problem,” and we knew it was time for the label. We knew because his idiosyncrasies—his quirkiness—was interfering his life and his development. He was not making any progress.
So at just under two years old, while we lived in Buffalo, Jack was diagnosed with Pervasive Developmental Order-Not Otherwise Specified. This is also called PDD-NOS.
When he was three, we moved to New Hampshire. On his very first day of preschool they told us his new label was Autism Spectrum Disorder, or ASD for short, because New Hampshire didn’t carry the classification for PDD-NOS.
I promise you, he did not change in our trip across the northeast part of the country. He was the exact same child we buckled into a cracker-littered car seat and drove across New York State, through Connecticut, into Massachusetts, and eventually, after eight hours of driving, over the border into New Hampshire.
He was the very same boy who screamed for 461 of the 465 miles, who only slept or quieted when Kermit the Frog crooned The Rainbow Connection, and who gobbled McDonald’s French fries at warp speed with his greasy little fingers.
Yet the second we moved to New Hampshire, he was no longer a child with PDD-NOS. Instead, he had Autism Spectrum Disorder.
Per Merriam-Webster, a label is a word or phrase that describes or identifies something or someone.
Every day, I make a little bit more peace with his autism label. I remind myself that everything has a label; cars, houses, animals, people, flowers, buildings. The muffin I am eating right this second has a label, and that label is delicious.
(Also, blueberry and not Paleo, but I may be getting off track here.)
To this day, Jack is still quirky. He thinks cars cost $3 but he can fix the DVD player. He spent an hour screaming because I made him unload the dishwasher, but when no one was looking he changed two light bulbs that had burned out in my office lamp.
He starts every single day with an episode of “I love Lucy.”
He ends every single day with a bowl of ice cream.
He knows the population of Nigeria, but the other day in the car he asked me what the word refuse meant.
I guess you could say the threads of perseveration and routine and rigidity and anxiety are intact within the spectrum tapestry, and yet the colors change by the minute, by the hour, by the day.
If someone from NASA or a researcher from a medical team knocked on my door tomorrow and asked me if Jack has Asperger’s or PDD-NOS or Autism or if he was quirky, I wouldn’t give them a straight answer. Instead, I would tell them this story:
It was close to 8:00 at our house and there were dirty dishes all over the counter and the table. The pots and pans I’d used to cook dinner were still on the stove. I felt unmoored, undone. I wanted the night to be over.
It had been a long afternoon of reminding Jack to finish his homework and taking away the computer and listening to him scream for the computer. Now, he was clutching his notebook in both hands and threatening to light it on fire.
I stood behind the sink, and my husband Joe sat at the counter.
“Why can’t you—“
“He’s exhausted, let it—“
“I can’t let it go, Carrie ! He needs to finish this problem!”
All at once, a young girl stepped between us. She was wearing her pink bathrobe, and her hair was wet from her shower.
“Mom, Dad, I think I can help him. He likes to talk to me. Let him talk to me.”
“Rose, we can handle this.”
“Let me try. He will talk to me.”
By this point, Jack was circling, screaming, flapping. Gently, she followed him through the kitchen.
“Jackie,” she called out softly, using her special nickname. “Tell me. Tell me about 6th grade.”
“You KNOW,” he raged, hitting his hands on his head. “I TOLDED YOU!”
“Tell me again,” she said so quietly. “Tell me about art class.”
“No more no more paintbrushes no more for a week because there is no more.”
“Why, Jackie? Why no more paintbrushes?”
Watching as she took his hand and guided her big tall brother to the nearest stool, I nearly wept, from what exactly I can’t say. Gratitude, or maybe relief. Or maybe because I was—and am—so tired of it all; the battles for the simplest task and the screaming and the stimming and the longing and the trying.
This will never be over. No matter how many times we change the name, autism is not a Halloween costume he can slip on and off. It’s more like a tattoo. It is inky and permanent and real.
Jack never did finish his homework, but he sat side by side with his sister, and that was enough. That was the very best we could do this time.
After I finish telling my story, I will go on to say that I do not care what we call it. I do not care if one day he’s considered Asperger’s or PDD-NOS or whatever term the people in charge conjure up next.
I just want to remember that night, in my kitchen.
I want to remember the pinkness of her robe, and how her hair curled up on her cheek. I want to remember the way he leaned toward her to hear her voice, the way he was calm for the first time in hours.
I want to remember that his label is fluid. It breathes and moves and changes. It is infinitesimally different today than it was the day before.
I want to remember that before he is a label, he is a student and a classmate and a neighbor and a cousin.
He is a nephew and a brother.
He is my son.
He is Jack. Or, for one 8-year old girl, Jackie.
September 21, 2015 @ 10:53 am
Since the Aspergers classification has been removed and people (in the UK certainly) are being diagnosed with “autism”, I’ve been asked lots of times what my children have/are. I just say autistic, as anything else seems to provoke a spate of arguments about how I can’t possibly be right.
Apparently my oldest son “can’t have Aspergers” because he can maintain eye contact. Etc etc. It’s a spectrum and I have seen for myself how all my diagnosed children (3 so far) can move up and down it on any given day.
New to your blog, really enjoying reading your thoughts.
September 21, 2015 @ 11:48 am
Every time I read your blog, I feel as if I am looking into my own life (minus 2 children). My middle son, Triston, was label at around 3 years of age. The original label was Aspserger’s disorder, but has since been changed many times as, like Jack, he is a touch of this and a touch of that. He is now 14 years old and is doing better at controlling his temper, although he still has his days. His latest is asking insane questions to me like “Am I a human or an alien?” or answering questions with answers insanely, like recently when his older brother asked him the 3 phases of water and he answered “Pizza” (Pizza water does not sound appealing to me). Each and every day, like you, I wonder what his future is going to be like, but all I can do is live in the moment and prep him as best I can.
September 21, 2015 @ 12:47 pm
Nailed it.
Our son (“Jack” as well) started on his alphabet soup journey early. First, it was ‘SID’ for Sensory Integration Disorder (now itself known as Sensory Processing Disorder to avoid the confusion with Sudden Infant Death Syndrome or SIDS). Then as we entered a special mixed typical/atypical pre-school program through our District he was labeled as ‘OHI’ (Other Health Impairment). From there (all without leaving my gaze) he became a child with ADHD-Combined (not to be confused with regular ADHD or even ADD). Of course, as his frustrations increased from his anxieties, we had to seek out therapy for what might be ODD (not his behavior — no, short for Oppositional Defiant Disorder). It seems that many times a diagnosis of ADHD (etc) can block or mask a diagnosis if ASD (http://www.medscape.com/viewarticle/850927 ) so while you are dealing with the ADHD, you may be neglecting the ASD (leading to a build up of frustrations and anxieties)[note: then you read articles that scare the stuffing out of you by warning you that if you do not address the ODD, the child can grow into a diagnosis of ASPD (Anti-Social Personality Disorder). But……after a fight in the PPT we sent him to the Yale Child Study Center (YCSC) where they confirmed that he had ADHD alright — right alongside his PDD-NOS (he also has some GI problems but that is another alphabet trail). From there the PDD-NOS was judged to be Asperger’s which has now been rolled into ASD. Well the other day he asked me if he had ‘Autism’ and I told him “yes”. I was expecting some big father/son talk or discussion. Instead, he said — “good”. It seemed that he was then eligible to play on a Minecraft server called ‘Autcraft’ that was designed for kids on the spectrum and was a safe place for him to play because they did no allow bullying. So for me, the only letters I need to describe my son are O.K.
September 21, 2015 @ 1:31 pm
I ask myself the same question everyday….is it autism, asperger or just quirkiness….. He’s officially diagnosed (by 3 sources even) but I am on the fence about it…. going one way or another…..or another depending on the days and the behaviors….
From my perspective, he has CMS (flapping/pacing) can happen in non autistic people….cognitively fine….odd socially and late in speech (like his dad used to be)…. He’s 4….let’s wait and see and do the best we can in between.
September 21, 2015 @ 2:21 pm
“It had been a long afternoon of reminding Jack to finish his homework and taking away the computer and listening to him scream for the computer. Now, he was clutching his notebook in both hands and threatening to light it on fire.”
yeah, right down to threatening to set the homework on fire …
September 21, 2015 @ 3:24 pm
When I saw your title I thought yes, someone else knows about the “quirky” diagnosis! In our final meeting with the psychologist that evaluated our then 5yr old for Asperger’s she used the word quirky so many times I felt like we should be able to write it down on school forms and get services for him. She did not diagnose ASD but did diagnose ADHD, anxiety (particularly social) and sensory processsing issues with the ever present reminder, “he is just one quirky kid; I mean just the way he thinks and processes is so quirky”. To this day I think it’s about as good a descriptor of him as anything but alas “quriky” does not get you special services. Today was a new thing at our school, “Independence Day” where they wanted every single child to use the car rider line. Since our son was crying at home even before leaving, anxious about all the terrible things he was sure would happen at school, unable to remember the fun he’d had other days but instead focused on everything about school that is overwhelming: the noise, too many kids, no personal space, being touched and talked to by “strangers”, chaoitc recess with so many children he can’t possibly participate, etc, his dad walked him in as usual to ease the transition from home to school (leaving home to go anywhere is a challenge, a hump to struggle over each and every time). Except being walked in wasn’t calming today as “strangers” kept “encouraging” him to be independent with words and pats which were very agitating and overwhelming and the routine was different because they had to stop and sign a book to get in and receive their guilt trip. If only they understood all the work that goes into getting my “quirky” child to school each day, maybe they’d realize he’s being a lot braver than all the kids who rose to the occasion of Independence Day.
September 22, 2015 @ 7:15 am
Reblogged this on oshriradhekrishnabole.
September 22, 2015 @ 12:28 pm
Thank you, Carrie, for your beautiful words which, as always, go right to the heart of things. Always a pleasure to read – through the tears! ?
September 23, 2015 @ 10:41 am
My daughter also has autism (or is it aspergers?). A generation ago, she would just have been “quirky” or “weird.” I really recommend you read NeuroTribes, about the history of autism — among other things, it talks about how the definition of autism has grown and shrank over the years and existence (and non-existence) of a separate Asperger’s diagnosis.
September 23, 2015 @ 2:20 pm
Beautifully written. Our lives are so similar! Five kiddos, and I thank God every day, because sometimes Ryan’s siblings are more helpful than I could ever be. Thank you for this blog. I love reading it!
September 24, 2015 @ 9:34 am
Don’t worry so much about the ‘sqeeziblilty’ of your child as they approach their teens. They are storing up the fat reserves necessary for the growth spurts to come.
September 24, 2015 @ 4:09 pm
At age 3, she got a standard autism diagnosis which has always created disbelief since that makes the average person think of “classic” autism and she doesn’t “present” like that. But like yours, although there are a lot of Asperger’s traits, there was a language delay which has ruled that out. Asperger’s would be better since it’s so trendy and there’s so much swag you can sport to be accepted and understood. Now at age 8, the most recent expert opinion for us is PDD-NOS (even though it’s all ASD in the DSM now) and that doesn’t look so cool on a tshirt.
ps. mine can write code but can’t tie her shoes or eat with a fork.
May 23, 2016 @ 2:40 pm
Thank you Carrie. I cry when I read your posts. My son is 9 and his ” behaviors ” have been changing and evolving/regressing over the past two years. He met all his milestones until age 5. Nobody can decide what his label is. I am so tired of people telling me he doesn’t fit here or there. He doesn’t match this or that diagnosis. They say he’s too old to have a developmental delay but there’s clearly something wrong with him.
I just want help! I mean how do I help him ( or me for that matter) to keep all his blankets in a perfect rectangle without any bumps or wrinkles so he can sleep through the night. He wakes up many times a night needing me to fix them and make sure the sheets are straight. Each blanket has to be put on one by one or he screams, cries and hits his head. The therapist says its OCD and to just ignore it. I tried that and found him crying alone in the kitchen because his blankets were wrong, of course. How can he go through a day of school after a night like that?
The same with his weight and food. He will only eat certain foods and has to have pretzels with every meal, no matter what or he is devastated.
Anyway, I keep thinking someone in the medical profession can help me. The therapist put him on anti anxiety meds to see if it can help him focus and be calm. He asks me if he’s focused yet. How long will it take.
Your blog brings me relief. We are not alone. I am so glad you have chosen to share your life with us. It helps more than you’ll ever know!!!
December 11, 2018 @ 6:21 am
I wound up here because I’ve been looking into ASD for several months. And while I know self diagnosis is not okay, the reason for all my research is to find answers, and get professional help.
The story about Jack and his homework really hit home for me. I’m female, so the symproms I’ve heard can be different ! But i stim, and when I was small I would scratch my head so hard it bled at times. It’s *still* soothing now, as an adult. But I control it and don’t hurt myself. 🙂
Reading this post has given me the last push I needed to call whoever it is I should call. Maybe the psychologist I met with breifly several years ago, to see if we got on, and then anxiety took over and I never called her back.
I’m not sure if you’re active at all, but if you have any advice for someone who will be going through the questionaires and whatever else a Dr appointment entails when a person says “I feel I could be autistic”, please let me know~
Warm wishes,
Luca
December 11, 2018 @ 7:41 am
Thank you for sharing your story, Luca. Feel free to e-mail me at carrie@carriecariello.com. I wish you the best in your journey.