The Spectrum of Our Family's Autism
On a couple of FaceBook boards I belong to, the subject of how autism is a spectrum came up. These are boards for parents of lower functioning children, and their feeling was that higher functioning autism was just not the same animal as typical Kanner type autism-or the nonverbal, with lots of behavioral issues kind of autism.
"Not so" said I.
"Tell us why," they said.
So here's the blog to lay out how our family demonstrates the spectrumness of the spectrum.
First, of course, is the genes. Obviously, in our kids, some of the same genes played a part in whether Isaac had Asperger's, or Nathan had more typical autism. But other genes were turned on and off to play a part in the severity. And also genes turned on for bipolar, that makes Nathan's autism even more difficult. Because I have bipolar in my family. And both of our families have severe depression and anxiety disorders running rampant. Bipolar, like schizophrenia, runs on genes close to some of the known genes for autism disorders. I sometimes joke that our gene pool must be a cesspool.
But developmentally there is a continuum where our kids overlap. And behaviorally where they have the same issues, to more or lesser degrees.
In the beginning there was the (spoken) word
Or the lack thereof.
Sam started off nonverbal until he was 4. Around 4 we started with PECS and some sign and then usable language started breaking through. He had had lots of stim language (repeating movies, songs, phrases, etc.) before he developed usable language. He still has lots of stim language, although it is a lot more verbose (entire MineCraft videos, yay.) In the last few years he has been able to recall events that happened even days earlier and tell us about them. In the last year, since turning 14, he has been able to recognize and tell people when he was being bullied, which is awesome. He does the typical autism thing of talking your ear off when you have absolutely no desire to discuss the topic. Or bringing up embarrassing topics ("Wow, you are SO black," he said to the ice cream server.)
Nathan started out with language, which sounds great. Table, floor, chair. But all of it was naming, learned from the videos we were using to teach Sam. 50 words at two years, perfect right? Except he used none of it to communicate. It was all for his private entertainment. He had neither receptive nor expressive useful language. Sign did not matter to him and he did not seem to be able to use his hands that way. PECS were for chewing up. Around 7 he started answering phrases presented on a card (I want to drink: juice milk) with one word in a very quiet voice that he reserved for communication. Many people could not understand him as he communicated in a whisper. His stim voice continued at a loud, sometimes piercing voice. When we began homeschooling with him at ten years, he read in that same sotto voce. So quiet that when I tried to record it to prove to people that he was reading, it couldn't be recorded. Today, 16 months later, he reads in a quiet, but normal level voice that can be understood as long as you are with him in a quiet room. At 12 he presents his requests about 50% unprompted and 50% prompted. And they are audible. Still, he has trouble with internal events, like voicing when he needs to pee or is hungry.
Isaac talks a lot, and always has. The problem is recognizing when people are not interested, when it is not an appropriate time to talk, when it is appropriate to talk and what things to talk about with what people. All things that Sam is facing now.
I remember telling my mother-in-law that I did not mind if Sam said "Shit, fuck, and damn" so long as he talked. Now we have ground rules about adult language for all 3 boys. I love how "Fuck" is so much easier to say for a minimally verbal kid than "potty."
Can you hear me now?
Receptive language is concrete for all three of our boys. Isaac sometimes fools us with his advanced verbiage and we start using non-concrete language that pulls him up short. "Is that an idiom?" is a favorite phrase. Sam will say "are you kidding me?" if he doesn't like what he hears and he thinks we are teasing. Nathan requires very concrete, fact-based, 'now' language. "What do you want to eat, hot dog or cheese sandwich?" Which is where Sam was 9 years ago.
One thing that is making up happy in the last year is that Nathan gets upset when we talk about his 'hard times'-or when he is having trouble controlling his behavior. When I took him to the psychologist, for example, I told him ahead of time we would be discussing how much trouble he was having. And even then, I had to tell him over and over that we were discussing this to help him get more control, because he would get distressed, hit the walls and bite himself. We had realized that Sam was listening in and understanding when he was about 4. He would get upset when we would talk about him in the car.
In so many ways, we can see the trajectory of Sam's development, but in slow motion with Nathan. While it gives me hope, it worries me. If what took Sam 5 years, takes Nathan 12, will we be seeing independence at 50 for Nathan when it will take about 30 for Sam?
The same behavior in a different flavor
We have had trouble with elopement. The desire to get somewhere when your parents (teachers, aides, etc) have not an EFFING CLUE WHERE THE HELL YOU ARE.
Ehem, yes, that has been a problem for us. Thank you for asking.
Nathan is the master. Having had the fire department, state police, school staff looking for you while you eat popsicles and get naked enough to try out the wonderful claw footed tub in the neighbor's house who happens to be napping blissfully unaware on the couch is mastery level. Or going out the window to try out the gumball machines at the bowling alley 1/4 mile away and across a busy street.
However, the other two also get self absorbed enough to wander repeatedly away from me while walking in Walmart, with the idea that looking at electronics/toys/marshmallow/anything but this is a good ideaandwhoisthatwomanscreamingatmetocomebackhererightnow? Oh, mom, right, you're here.
Awareness of internal body cues is another area our boys share varying degrees of difficulty. Nathan still has meltdowns because he is often not aware that he is hungry. We have to keep track of when he last ate and what so that we can avoid trouble. We mess that up a lot. And with him a growing near-adolescent, even thinking he should have eaten enough, doesn't mean that he has eaten enough for him. Sam is the opposite, and will eat till he's nearly sick. We had to impose limits on the volume of food he ate. For a while we had to set a timer to keep him from just shoving food in his mouth as fast as he could. He uses a scale to weigh his breakfast cereal.
Nathan will pee when he needs to at home, but will not tell us that he needs to. He has been known to walk a block from our house, stop and pee on himself. This is another thing we have to keep track of. Isaac will deny he has to pee, vehemently. Then when taken into the bathroom, rush in and pee like a racehorse. He peed himself at school. He often rushes to the bathroom in the middle of playing.
Having three on the autism spectrum gives us a rare glimpse at a wide span of how autism affects communication, attention, and awareness of internal events.
"Not so" said I.
"Tell us why," they said.
So here's the blog to lay out how our family demonstrates the spectrumness of the spectrum.
First, of course, is the genes. Obviously, in our kids, some of the same genes played a part in whether Isaac had Asperger's, or Nathan had more typical autism. But other genes were turned on and off to play a part in the severity. And also genes turned on for bipolar, that makes Nathan's autism even more difficult. Because I have bipolar in my family. And both of our families have severe depression and anxiety disorders running rampant. Bipolar, like schizophrenia, runs on genes close to some of the known genes for autism disorders. I sometimes joke that our gene pool must be a cesspool.
But developmentally there is a continuum where our kids overlap. And behaviorally where they have the same issues, to more or lesser degrees.
In the beginning there was the (spoken) word
Or the lack thereof.
Sam started off nonverbal until he was 4. Around 4 we started with PECS and some sign and then usable language started breaking through. He had had lots of stim language (repeating movies, songs, phrases, etc.) before he developed usable language. He still has lots of stim language, although it is a lot more verbose (entire MineCraft videos, yay.) In the last few years he has been able to recall events that happened even days earlier and tell us about them. In the last year, since turning 14, he has been able to recognize and tell people when he was being bullied, which is awesome. He does the typical autism thing of talking your ear off when you have absolutely no desire to discuss the topic. Or bringing up embarrassing topics ("Wow, you are SO black," he said to the ice cream server.)
Nathan started out with language, which sounds great. Table, floor, chair. But all of it was naming, learned from the videos we were using to teach Sam. 50 words at two years, perfect right? Except he used none of it to communicate. It was all for his private entertainment. He had neither receptive nor expressive useful language. Sign did not matter to him and he did not seem to be able to use his hands that way. PECS were for chewing up. Around 7 he started answering phrases presented on a card (I want to drink: juice milk) with one word in a very quiet voice that he reserved for communication. Many people could not understand him as he communicated in a whisper. His stim voice continued at a loud, sometimes piercing voice. When we began homeschooling with him at ten years, he read in that same sotto voce. So quiet that when I tried to record it to prove to people that he was reading, it couldn't be recorded. Today, 16 months later, he reads in a quiet, but normal level voice that can be understood as long as you are with him in a quiet room. At 12 he presents his requests about 50% unprompted and 50% prompted. And they are audible. Still, he has trouble with internal events, like voicing when he needs to pee or is hungry.
Isaac talks a lot, and always has. The problem is recognizing when people are not interested, when it is not an appropriate time to talk, when it is appropriate to talk and what things to talk about with what people. All things that Sam is facing now.
I remember telling my mother-in-law that I did not mind if Sam said "Shit, fuck, and damn" so long as he talked. Now we have ground rules about adult language for all 3 boys. I love how "Fuck" is so much easier to say for a minimally verbal kid than "potty."
Can you hear me now?
Receptive language is concrete for all three of our boys. Isaac sometimes fools us with his advanced verbiage and we start using non-concrete language that pulls him up short. "Is that an idiom?" is a favorite phrase. Sam will say "are you kidding me?" if he doesn't like what he hears and he thinks we are teasing. Nathan requires very concrete, fact-based, 'now' language. "What do you want to eat, hot dog or cheese sandwich?" Which is where Sam was 9 years ago.
One thing that is making up happy in the last year is that Nathan gets upset when we talk about his 'hard times'-or when he is having trouble controlling his behavior. When I took him to the psychologist, for example, I told him ahead of time we would be discussing how much trouble he was having. And even then, I had to tell him over and over that we were discussing this to help him get more control, because he would get distressed, hit the walls and bite himself. We had realized that Sam was listening in and understanding when he was about 4. He would get upset when we would talk about him in the car.
In so many ways, we can see the trajectory of Sam's development, but in slow motion with Nathan. While it gives me hope, it worries me. If what took Sam 5 years, takes Nathan 12, will we be seeing independence at 50 for Nathan when it will take about 30 for Sam?
The same behavior in a different flavor
We have had trouble with elopement. The desire to get somewhere when your parents (teachers, aides, etc) have not an EFFING CLUE WHERE THE HELL YOU ARE.
Ehem, yes, that has been a problem for us. Thank you for asking.
Nathan is the master. Having had the fire department, state police, school staff looking for you while you eat popsicles and get naked enough to try out the wonderful claw footed tub in the neighbor's house who happens to be napping blissfully unaware on the couch is mastery level. Or going out the window to try out the gumball machines at the bowling alley 1/4 mile away and across a busy street.
However, the other two also get self absorbed enough to wander repeatedly away from me while walking in Walmart, with the idea that looking at electronics/toys/marshmallow/anything but this is a good ideaandwhoisthatwomanscreamingatmetocomebackhererightnow? Oh, mom, right, you're here.
Awareness of internal body cues is another area our boys share varying degrees of difficulty. Nathan still has meltdowns because he is often not aware that he is hungry. We have to keep track of when he last ate and what so that we can avoid trouble. We mess that up a lot. And with him a growing near-adolescent, even thinking he should have eaten enough, doesn't mean that he has eaten enough for him. Sam is the opposite, and will eat till he's nearly sick. We had to impose limits on the volume of food he ate. For a while we had to set a timer to keep him from just shoving food in his mouth as fast as he could. He uses a scale to weigh his breakfast cereal.
Nathan will pee when he needs to at home, but will not tell us that he needs to. He has been known to walk a block from our house, stop and pee on himself. This is another thing we have to keep track of. Isaac will deny he has to pee, vehemently. Then when taken into the bathroom, rush in and pee like a racehorse. He peed himself at school. He often rushes to the bathroom in the middle of playing.
Having three on the autism spectrum gives us a rare glimpse at a wide span of how autism affects communication, attention, and awareness of internal events.
Phew you have your hands full.. I thought that my life was busy with just one! :) Such a fascinating post to read and I am with you on the swearing. I was so excited when Nick's first word was shit, although of course he didn't really mean shit! Any word suits me!
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