Autism Awareness Month A-Z original 2016
B is for Behavior
B is for Behavior
All behavior serves one of 4 functions. To gain attention, to escape a situation, to gain access to something (usually tangible) or a response to an internal stimuli such as hunger, illness or exhaustion. Seriously. Just 4 reasons anyone does anything. Think about it…you won’t come up with a 5th..I have tried. Of course, if it were that simple we would all live in harmony. However, there are some times it gets tricky. For instance, when a behavior is triggered by something internal, it can be incredibly difficult to identify. So if a child with autism likes to clap his hands near his ears is it because he likes the sound? Or is it because he likes how his hands feel when he claps them together? Or is it because it creates a little wind near his face which he likes? To make matters even more…
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Sensory differences are a common symptom of autism. Often kids on the spectrum can become overwhelmed by these differences. A1 tells me that a public toilet flushing sounds like a bomb going off and for several years he avoided public restrooms. A2 flaps his arms and locks out his knees whenever he is filled with anxiety. Kind of his virtual rocking chair….or else he is just hoping to fly away from the dentist/barking dog/hand dryer. As autism-folk we try to build awareness by creating overwhelming scenarios to get NTs (neurotypicals–yes, we have a name for you) to sympathize the plight of the kid flicking his fingers in front of his face as a way to stop having his eyes taking a million pictures at once or the kid who is pacing because he can’t tell where his body is in space. But sometimes, I am fairly certain that some of those sensory integration differences are not experienced in a negative way and sometimes there are common things that just look, sound or feel like something not of this world. If I could only take an x-ray of A2s little mind and see what he could for 10 seconds. (Feel free to smile at this picture….)
O is for Obstinate
All kids can be defiant. All kids can be persistent. Most can be both at one time or another…..however the persistence of a person with Autism can sometimes be far outside typical willfulness of even the most obstinate of kiddos. Most of this stems from intense need for familiarity, order and sameness of routine. This rigidity is part of the diagnostic criteria of Autism Spectrum Disorders. Sometimes I have no idea what will trigger A2 into a 3 hour long battle of wills. What can be a 5 minute routine one day can take 2 hours the next even when he knows that routine ends in something he enjoys. A1…no matter how much punishment, berating or time outs he got, he would get right back up and do the same thing over again. One summer I decided to ‘put my foot down’ and send him to the time out step after every single infraction. No warnings. That should teach him! After about a week of this, there was a day that I had sent him 17 times all before my husband got home from work. And he went willingly. Every. Single. Time. Something was very wrong and thankfully I had a moment of clarity. I got a clear cup, drew some lines across it and found a bag of marbles. Every time I caught him doing the right thing, I would throw a marble in the cup with the caveat that he couldn’t point out to me how good he was being. Unless he hurt someone (which he never did), there was no more time out step. Every time we filled the cup to a line, he got to pick what we did next in our day. If we got to the top (by the end of the day), he could get a dessert after dinner.
Just. Like. That. Everything was different. He would listen the first time and look out of the corner of his eye to see if I was digging for a marble. He got double marbles if he initiated social interactions. Before long, we were engaged in pretend play in the basement.
I had someone close ask “Don’t you think it might not be autism? Don’t you think it is could be his personality?”.
“Well, ” I indulged “if everything we do serves a function, what function do you think his behavior served that week?” Without much hesitation, she drew her hand up as if she was grabbing something and said “To have a ‘gotcha’ moment!” I thought for a moment. “What 4 year-old would rather sit on a step over and over, day after day instead of playing just to get under his mother’s skin? Isn’t a week long enough to learn that without the behavior increasing?” A four-year-old. Clinically, that would be a much, much bigger issue than autism.
Before that, I used to joke about how even a dog can learn to salivate to the sound of a bell when paired with food over time, yet I could not get my child to understand how his behavior had anything to do with the consequence he would receive. It’s one of the most bewildering and frustrating parts of parenting because regular consequences do not work. Though A2 may connect consequence to behavior in the moment, the pathology outweighs all and it is likely that he may not learn from his behavior for the next time. A2’s Childhood Apraxia of Speech required us to do drill work with cards for sounds and words over and over. Did we create some of this rigidity with him because of this? Probably. Did I have any idea that would be possible then? No. But the trade off was that he learned to try to speak and can make some needs known so that people other than me and my husband understand. Was it worth it? As a parent with limited understanding and resources I would have to say “yes”, because he displayed rigidity before that. Even as I add to this blog post from the original version written two years ago, I realize how much I have learned to even question if this was possible. We have lots to continue to learn.
Halloween is right around the corner…here’s some of my top tips and tricks to make Halloween fun and to hand off to any of the indignant PTO moms who have forgotten that ALL kids want to have a good time…..
Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.
A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal…
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Day 20 2016: T is for Teachers and Therapists
Day 20: T is for Teachers and Therapists
97. A2 has had a total of 97 teachers and therapists in his short 9 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published…lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 80,000 hours on this planet. Some were stellar….life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact…
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Day 18 2016: R is for Relationships (originally posted 4/2015)
“Are you sure he has Autism? He’s so friendly…”. While there are more nuanced aspects now to the criteria, failure to develop peer relationships appropriate to developmental level is one of the defining and most obvious diagnostic identification for children with autism. Interest in people in general, desire for friendships and loving behavior can muddy the diagnostic waters and confuse people about what autism is and what autism isn’t. Disconnectedness, aloofness and lack of desire to be touched does not always translate as a lack of desire for relationships. The desire is there, the understanding for how that happens is not. It can just be easier to be by yourself. A1 can tell you that. Indiscriminate friendliness, hugs and kisses to those he loves and the compulsive desire to be around a lot of people doesn’t always coexist with developmentally appropriate social skills. A2 probably would tell you that part…if…
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D is for Diagnosis
By the time my oldest was 18 months old, I knew he had Asperger’s….but no one else seemed to know except for maybe my husband. He spoke like an adult yet seemed confused whenever anyone asked him something directly. (“He’s a genius! Listen to him talk…he’s just busy thinking about other things”). At Mommy-Tot class while all the other babies would watch with wonder as technicolor bubbles floated by, he was finding his way across the gym to open and close the door over and over. (“He’s a genius! Bubbles are beneath his intelligence!”) And yes, he loved to go to the park….but would decide which park based on what kind of public toilet was there and then would spend the majority of his time in said toilet if allowed….and I would often have to threaten him with a consequence if he didn’t go and play (“He’s a genius! He’ll be an engineer one day…he just wants to know how it works!”). While he also never hugged or kissed me, he would let me do it to him. I said “I love you” any opportunity I had but he never said it back. He would let me sit down to play with him, but his back would soon be turned and he was playing on his own again. His conversations often consisted of repetitive phrases over a video he watched over and over for months at a time. The list could go on and on….but the fact was that he was not particularly disruptive, he was functional and he was so cute and tiny and spoke so well people mistook him for a quirky genius. What was difficult is that we lived far from family and friends so when they saw him for brief periods they would just tell us we were worrying too much. They would see the quirk for a few days at a time….not hours on end like we saw. So when my youngest got to be about 8 months old and clearly had serious medical issues all concerns we had about A1 went to the way side. My concerns were still there but again were also pushed aside by the pediatrician when I would bring them up (“Some kids are just persistent” “Drooling has just become a bad habit”) It wasn’t until he was 7 years old that I had him tested and really, it was only because he was floundering at school. I was being told that “some kids are average to below average”….the same kid just 2 years earlier everyone was telling me was a genius. I had to see if he had a diagnosis in order to get him the assistance he needed at school…And sure enough….psychoeducational testing by a licensed psychologist showed what we always knew. ADHD and Asperger’s Disorder. A few years later I actually got a second opinion from another psychologist…and guess what….same outcome. On standardized testing. Across settings. Again. He is definitely not a genius…but he is also definitely not below average. A1 is the fall-through-the-crack kid. His rigidity can be seen as defiance. His poor social skills makes him look like a loner. His attention issues make him look lazy. And as the person who lives with him 24/7 I can tell you he is no more of those things than any 12-year-old. He is a people pleaser and when he thinks he has failed at that he kicks himself over it. Overall, A1 is going to be fine….but I believe it is because we have recognized the thing that makes him different…but not less.
A2 was not diagnosed until the age of 4 despite my husband and I and everyone around us knowing something was very wrong. What was troubling was that when he turned 6 months old and I started him on solids…everything else stopped. Except for the worst constipation I have ever witnessed. He stopped growing. Stopped. Completely. At one year he was about the same size and weight as he was at 6 months old. He stopped developing but did not lose any skills. At 12 months he was the same adorable little nugget he was at 6 months. Was it possible I willed him to stay an infant? What also did not change was his inability to stay asleep for more than 90 minutes at a time. Down for 90…up for 2 hours. This went on for 2 years and one day I got the flu and was out of commission for 10 days. I had to let my husband get up with him through the night. When I got out of those sweaty sheets after 10 days….it occurred to me that I was not clinically depressed as I believed I was up until that moment my body became an achy, hot mess….I instead emerged a new woman. A rested woman forced to sleep by a virus. A2 had already been diagnosed by a fresh muscle biopsy at the Cleveland Clinic with Static Encephalopathy with Mitochondrial Dysfunction….we got a scary letter to take with us everywhere we went. We were told not to let his blood sugar drop too low. We were told to keep him cool in the summer. We were told to have a very low tolerance for fever and dehydration. We were told he had an uncertain life span.
At about 2 years old when he started crawling he found that rubber stopper thingy behind a door. Thhhhwwwaaaang! He’d whip his head to the side and roll his eyes. Thhhhwwaang again. Again with the head thing and eye rolling. I remember my heart dropping to my stomach. I remember thinking “oooohhhhh shiiiiittt”. I knew that was a stim (self-stimulatory behavior). For the next 2 years I watched A2 develop at 20% of the speed of the rest of his peers. He went from being the most social baby of the group and as his peers developed speech I watched him realize he was not part of the group…to standing by the group and watching everyone play….to standing out of the group and not paying attention to everyone. To this day I believe it is not because he didn’t want to…but because he knew he couldn’t. He flapped. He screamed. He stopped eating all solid food. He had no language other than the vowel sounds of babbles of a young infant. But he was still sweet, and loving and laughed heartily. He was finally diagnosed at 4 years old with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). The diagnostic version of “your kid has Autism…mostly…”.
What’s in a name? Autism, Asperger’s Disorder, Pervasive Developmental Disorder Not Otherwise Specified, ASD, HFA, On-The-Spectrum, Neurodiverse, High functioning Autism, Severe Autism, Non-Verbal Autism. You may have heard any and all of these used when hearing about someone who has Autism Spectrum Disorder (the now official diagnosis to describe all of the above as of 2013). We will likely intuitively still call Autism all of these terms because as we have all heard “if you meet one person with Autism…you have met ONE person with Autism”. The criteria was narrowed and Asperger’s and PDD-NOS were eliminated from official diagnosis. In my private practice as a therapist, I now see children who come through my office with a list as long as my leg (I’m only 5 feet tall, but you get the picture). Oppositional Defiant Disorder, ADHD, Sensory Processing Disorder, Dyslexia, Social Pragmatic Communication Disorder, Bipolar Disorder……all in one child. Why?? Because we have eliminated Asperger’s Syndrome from our vernacular. My children have both been reclassified as Autism Spectrum Disorder (as they are supposed to be due to consideration of prior history and diagnosis). But they could not be any different. With hard work that would make your head spin and a hard-core bitch of a mom they continue to improve in terms of working toward being independent, contributing members of our community. But they could NOT be any more different. This is autism.
B is for Behavior
All behavior serves one of 4 functions:
To gain attention
To escape a situation
To gain access to something (usually tangible)
A response to an internal stimuli such as hunger, illness or exhaustion.
Seriously. Just 4 reasons anyone does anything. Think about it–you won’t come up with a 5th. I have tried.
Of course, if it were that simple we would all live in harmony. However, there are some times it gets tricky. For instance, when a behavior is triggered by something internal, it can be incredibly difficult to identify. So if a child with autism likes to clap his hands near his ears is it because he likes the sound? Or is it because he likes how his hands feel when he claps them together? Or is it because it creates a little wind near his face which he likes? To make matters even more complicated…a behavior can change function midstream and without warning. So that same kid who liked hearing the sound of his own clapping next to his ear and his parent rushes over to him and holds his hands and tells him “stop! Lets play instead”….her reaction may have just inadvertently changed the function of the child’s behavior from internal reasons to external. Perhaps it becomes a great way to get his parents’ attention now too. Such is the nature of human existence…including humans on the Autism Spectrum. It is easy to judge others without understanding when looking at their behaviors through our own lenses. So next time you see a child having a tantrum in public or seems out of control, bear in mind that the function of his behavior may not be attention like you might be used to from a bratty kid. He may be responding to sensory overload and needs to leave or perhaps if you hang out long enough you may come to find it may be screams of joy because he has no other way to express it.
The sticky wicket of Autism. There are some moments I feel particularly lucky for autism. Those moments I watch slip away from my friends who’s babes with bountiful curls framing cherub faces ask for the straightening iron ……who have their gossamer wings clipped to keep their feet firmly planted on the ground….who no longer rub the wonder of dreams deeper into their eyes when they are sleepy….I would imagine it’s the bittersweet joy of having children…watching the transformation from innocent Angels to inhabitors of earth. I get to cavort with an angel for longer. I still get to hear a gasp followed by “look mommy…moon!”. I still get warm snuggly visits at 3AM. Bubbles are still magical. Raffi is still the only fully grown man who can sing wheels on the bus and get a rousing sing a long at our breakfast table. A2 can still do interpretive dance in the aisle at the synagogue during prayer while onlookers smile and nod as if it is part of the service. But it’s not for much longer….as those other children blossom from midlings to Ivy League applicants….A2 will likely still ask for The Muppets or try to squeeze himself onto a tricycle or squeal “go faster daddy!” as he coasts down a hill on a tandem bike….the promise of youth in the body of an adult where looks from strangers will fade from smiles when asked “what’s your name”. It’s not natural to pray you outlive your child….but we both agree as long as there are songs to be sung, dances to be danced and bubbles to blown we will move with him and try to always see the wonder of his world.