When my son was in seventh grade, when the number of children being diagnosed with some form of autism was 1 in 165 instead of 1 in 100, I came across an article from the New York Times on Asperger’s Syndrome (“Answer, but No Cure, for a Social Disorder That Isolates Many,” 4/29/2004; contact me if you would like a copy).
I’ve always characterized his Nonverbal Learning Disorder as a social communications disability that is comparable to Asperger’s Syndrome, but less severe. My son was diagnosed relatively early (age 9), and has gotten tremendous support from the local public schools. He has developed some compensatory strategies to help him in certain social situations – one of which is keeping quiet. As one gentleman in the article points out: being quiet can “make [people] think you’re a good listener.”
There are points made in the article that are disconcerting, but also some helpful tips. For example, there may be groups on Facebook for students with NLD, Asperger’s or other learning disability. It would be great if there were others like my son -- an avid Facebook user -- with whom he could share experiences. There are anecdotes related in the article that I would like him to read; others that I think are less pertinent. Some of the things written in the article I found just plain daunting to ponder – searching for a job for one.
I wish this were an article that would paint a more optimistic picture; unfortunately, it made me painfully aware of some situations that would arise in my son’s life I had not yet considered. But it also made me more sensitive to the fact that there are a lot of people in the same boat, dealing with one form or another of social communications problems. Moreover, there is a growing breadth of services becoming available to adults to teach them how to cope in different social situations.
Last night at the theater, my son and I ran into a classmate of his from the high school. Besides saying hello he lobbed the conversation ball back with a bit of small talk: “It’s funny running into you here!” Ninety-nine people out of 100 would read that and say “big deal;” but for the one in 100 with some form of autism spectrum disorder, that is a pretty big deal!
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Thursday, January 14, 2010
Tuesday, November 24, 2009
Front Page News
There is a story on the front page of today’s paper about a 13-year-old boy from New York City who was missing for eleven days. The boy was described as having “difficulty with social interaction…seemingly eccentric behavior and isolation.” Sound familiar? He has Asperger’s syndrome. After getting in trouble at school for an incomplete assignment he was afraid to go home, thinking he would be in more trouble. He spent the next week and a half riding – unseen, unnoticed – on the New York subway system. He subsisted on carefully rationed food and bottled water, and used a public restroom at a Brooklyn subway station near Coney Island.
His parents printed and distributed about 2,000 flyers with his picture; the NYC police department and Missing Persons Squad were on constant vigil; eventually the Mexican Consulate got involved in the search as well. Still, this youngster spent eleven days in the subways – unseen, unnoticed – before someone became aware of him and asked his name.
Fortunately, a happy ending: Apart from being hungry, dirty and having leg cramps, the boy was all right physically and returned to school the next week. You want to stand up and cheer that the boy with Asperger’s was clever enough to manage through what must have been a grueling and frightening ordeal. But those who have children with similar disorders know that, to some degree, he was able to manage because he was less aware of the potential things that could go wrong than you or I might be.
My family has received a lot of guidance around my son’s Nonverbal Learning Disability. He’s had specialists working with him, who have also helped us. The relationships with peers that were so difficult to foster were augmented by strong ties to adult family members, friends and mentors. We do our best to try and support and teach him, and still foster his independence. Yet I wonder how long it might have taken someone to notice him.
Children with social communications issues or autism spectrum disorders have a way of staying on the periphery, with an “invisibility cloak” wrapped around them. The more profound the disability, the harder it is to remove the cloak. This boy’s mother said, “I don’t know, as a mother, how to get to his heart.”
She'll need some help.
His parents printed and distributed about 2,000 flyers with his picture; the NYC police department and Missing Persons Squad were on constant vigil; eventually the Mexican Consulate got involved in the search as well. Still, this youngster spent eleven days in the subways – unseen, unnoticed – before someone became aware of him and asked his name.
Fortunately, a happy ending: Apart from being hungry, dirty and having leg cramps, the boy was all right physically and returned to school the next week. You want to stand up and cheer that the boy with Asperger’s was clever enough to manage through what must have been a grueling and frightening ordeal. But those who have children with similar disorders know that, to some degree, he was able to manage because he was less aware of the potential things that could go wrong than you or I might be.
My family has received a lot of guidance around my son’s Nonverbal Learning Disability. He’s had specialists working with him, who have also helped us. The relationships with peers that were so difficult to foster were augmented by strong ties to adult family members, friends and mentors. We do our best to try and support and teach him, and still foster his independence. Yet I wonder how long it might have taken someone to notice him.
Children with social communications issues or autism spectrum disorders have a way of staying on the periphery, with an “invisibility cloak” wrapped around them. The more profound the disability, the harder it is to remove the cloak. This boy’s mother said, “I don’t know, as a mother, how to get to his heart.”
She'll need some help.
Tuesday, September 29, 2009
More on Cleaning Up
Once again when I dropped my son off back at his dorm, I could not help but notice that his room was in a state. Cleaning his room at home was something for which I finally learned he needed instructions and I posted a list on his closet. In fairness, I posted the same list on his sister’s wall, so maybe it’s not so much a result of his learning disability. The list ended with “If it’s open, close it” which, I think, is one of the easiest ways to make a room look neater. However, in the five or six years that the list has been hanging there, I was never sure if he read it.
At home last weekend, he made himself a bowl of oatmeal and a cup of tea for breakfast. This entailed taking the oatmeal out of the pantry, taking the bowl out of one cupboard, taking a measuring cup from another, taking a spoon from the silverware drawer. He then put it in and took it out of the microwave. He took a mug from another cupboard and made himself a cup of tea. At the end of this process, every single door and drawer in the kitchen was open. I called him back to the kitchen, and said, “What do you see?” He immediately caught on and closed every one, even without anything more specific being said. Maybe he did read the “how to clean your room” list.
So last Sunday, I looked at his dorm room and saw a mess; but he often does not have the same reaction. If he picks up most of his dirty laundry and leaves a few socks on the floor, his room is clean. If he moves half of the books and papers that are scattered on his desk, the desk is cleared off. At this point, I really can’t put a checklist on his dorm wall with reminders to clean up. And it’s not like his roommate is a clean freak (thankfully). But there is a discernible difference in the two sides of the room, of which my son is utterly unaware. I tried to clean up and discretely point out that there were wrappers and bottles on the floor and he carted things off to the trash can.
Is being prone to clutter part of my son’s learning difference? No, not really; though NLD does have an impact on his general organizational skills. But the fact that he’s often unaware of what is in disarray and what is well-ordered probably is. So I’ll keep reminding him and, in good time, it will stick.
At home last weekend, he made himself a bowl of oatmeal and a cup of tea for breakfast. This entailed taking the oatmeal out of the pantry, taking the bowl out of one cupboard, taking a measuring cup from another, taking a spoon from the silverware drawer. He then put it in and took it out of the microwave. He took a mug from another cupboard and made himself a cup of tea. At the end of this process, every single door and drawer in the kitchen was open. I called him back to the kitchen, and said, “What do you see?” He immediately caught on and closed every one, even without anything more specific being said. Maybe he did read the “how to clean your room” list.
So last Sunday, I looked at his dorm room and saw a mess; but he often does not have the same reaction. If he picks up most of his dirty laundry and leaves a few socks on the floor, his room is clean. If he moves half of the books and papers that are scattered on his desk, the desk is cleared off. At this point, I really can’t put a checklist on his dorm wall with reminders to clean up. And it’s not like his roommate is a clean freak (thankfully). But there is a discernible difference in the two sides of the room, of which my son is utterly unaware. I tried to clean up and discretely point out that there were wrappers and bottles on the floor and he carted things off to the trash can.
Is being prone to clutter part of my son’s learning difference? No, not really; though NLD does have an impact on his general organizational skills. But the fact that he’s often unaware of what is in disarray and what is well-ordered probably is. So I’ll keep reminding him and, in good time, it will stick.
Wednesday, September 23, 2009
Major!
I am so pleased to be able to write that my son's difficulties in peer communicating do not seem to be holding him back at college. Near the end of grade school, I used to think to myself, "High School will be different." It was, but not as much as I had hoped. In the past year, I've been thinking "College will be different." It is...no qualifier!
My son mentioned that the other afternoon about 20 guys went down to a park on the beach near school (not bad to have a beach within walking distance) to play intramural Ultimate (that's short for ultimate Frisbee, although I still don't get the game -- I think it's like football). Then later that evening, a group of 15 or so kids -- guys and girls -- took a late night walk to a coffee shop.
To top it off, he returned the wrong and picked up the right tool, AND got to the post office where he picked up two books I had ordered for him and a "care package" from his grandmother.
This is all very good news for a worried parent, and it affirms my appreciation of the services he received from our school district in grade school and high school. He was nurtured and encouraged by some of the best teachers and professionals I've met.
A few more days...weeks...years like this and I'll breathe a sigh of relief.
My son mentioned that the other afternoon about 20 guys went down to a park on the beach near school (not bad to have a beach within walking distance) to play intramural Ultimate (that's short for ultimate Frisbee, although I still don't get the game -- I think it's like football). Then later that evening, a group of 15 or so kids -- guys and girls -- took a late night walk to a coffee shop.
To top it off, he returned the wrong and picked up the right tool, AND got to the post office where he picked up two books I had ordered for him and a "care package" from his grandmother.
This is all very good news for a worried parent, and it affirms my appreciation of the services he received from our school district in grade school and high school. He was nurtured and encouraged by some of the best teachers and professionals I've met.
A few more days...weeks...years like this and I'll breathe a sigh of relief.
Thursday, August 27, 2009
Autism Spectrum
I struggled over this entry. I don't want to get ahead of myself, but this morning presented me with a "teaching moment" -- possibly the first actual instruction! In the end, I decided to put it aside for a later entry and keep on track with further background.
My son's learning disability, Nonverbal Learning Disorder, is very similar to Asperger's Syndrome. Asperger's has been recognized for several years as being within the spectrum of autism disorders, but NLD has not. About a year ago, my husband, son and I volunteered to take part in a genetic study through Children's Hospital in Boston. Early in that process, the women interviewing us for our health histories said that NLD was expected to be similarly recognized in mid-2009. I have not heard whether that came to pass or not.
With the sharp rise in diagnosed cases of social communications and autism disorders, there is a plethora of information available on the subjects. It has become common in everyday dialog to hear someone mention a child they know of that is "on the spectrum." Like other words and catchphrases that have wiggled their way into our language over the past generation (AIDS and HIV positive, Windows and Mouse, TIVO and Texting), we don't have to stop and define the "spectrum" to which the speaker refers.
Understanding the complexities of their own disability is an important step for a young adult coping with it. I should add here, that my son has yet to read the results of the neuropsychological re-evaluation that was completed over a year ago. Nonetheless, at some point, he will need to know the symptoms and hallmarks of his particular diagnosis. The answer can be different for each person, and it is complicated for our son. In addition to the learning disability, he has been diagnosed with a movement disorder (which has been well controlled by medication he has taken since before turning two), and he has a dysfluency/speech issue as well. It has been identified as "initial onset dysfluency:" not quite a stutter, more of an extended pause before he can begin speaking. One of the recommendations in his educational plan is that teachers should allow him extra time to respond to verbal questions. The social communications problems caused by the NLD are exacerbated by the dysfluency.
Our son has spent most of his life so far in speech therapy of one sort or another, most recently in a "social communications" group setting (more later). As a toddler, he worked with a wonderful therapist who used left and right brain exercises, including "cross-crawling." It was the first I had heard of this and I was skeptical. But one day as I was driving home from day care and he was about three, he said to me, out of the blue, "I love you." Wow - whatever cross-crawling is, Please keep doing it!
My son's learning disability, Nonverbal Learning Disorder, is very similar to Asperger's Syndrome. Asperger's has been recognized for several years as being within the spectrum of autism disorders, but NLD has not. About a year ago, my husband, son and I volunteered to take part in a genetic study through Children's Hospital in Boston. Early in that process, the women interviewing us for our health histories said that NLD was expected to be similarly recognized in mid-2009. I have not heard whether that came to pass or not.
With the sharp rise in diagnosed cases of social communications and autism disorders, there is a plethora of information available on the subjects. It has become common in everyday dialog to hear someone mention a child they know of that is "on the spectrum." Like other words and catchphrases that have wiggled their way into our language over the past generation (AIDS and HIV positive, Windows and Mouse, TIVO and Texting), we don't have to stop and define the "spectrum" to which the speaker refers.
Understanding the complexities of their own disability is an important step for a young adult coping with it. I should add here, that my son has yet to read the results of the neuropsychological re-evaluation that was completed over a year ago. Nonetheless, at some point, he will need to know the symptoms and hallmarks of his particular diagnosis. The answer can be different for each person, and it is complicated for our son. In addition to the learning disability, he has been diagnosed with a movement disorder (which has been well controlled by medication he has taken since before turning two), and he has a dysfluency/speech issue as well. It has been identified as "initial onset dysfluency:" not quite a stutter, more of an extended pause before he can begin speaking. One of the recommendations in his educational plan is that teachers should allow him extra time to respond to verbal questions. The social communications problems caused by the NLD are exacerbated by the dysfluency.
Our son has spent most of his life so far in speech therapy of one sort or another, most recently in a "social communications" group setting (more later). As a toddler, he worked with a wonderful therapist who used left and right brain exercises, including "cross-crawling." It was the first I had heard of this and I was skeptical. But one day as I was driving home from day care and he was about three, he said to me, out of the blue, "I love you." Wow - whatever cross-crawling is, Please keep doing it!
Tuesday, August 25, 2009
A Late Start
I'm not exactly sure where to start here... Plan A was to write a book for children and adolescents with social communication disorders. Too late for that now, since my son leaves for college in five days. Would he have read a book of "Instructions For Life?" Probably not. But the past fifteen years or so have consisted of an enormous team effort to give him exactly that -- primarily from his teachers and family. I am not at all sure how much he actually absorbed in those years; I suspect much more than I sometimes give him credit for. But there is still a lot to learn, so here I go...
My son was about 8 when he was diagnosed with Nonverbal Learning Disability ("NLD"). NLD is one of several social communication disorders that are on (or near) the autism spectrum. If you view autism as a tunnel, with profoundly autistic children and adults deep inside, those afflicted with NLD are very close to the edge, but not quite outside with the "neuro-typical" population.
People with NLD generally have difficulty with organizational skills, and can struggle in school with certain comprehension tasks, including written test and assignment directions. Verbal explanations can help. We were fortunate that our school district was well-equipped to give our son the support that he needs. He has been very successful in the classroom.
But this is to be mainly about pragmatic skills for Life, not the educational subset.
The neuro-psychologist who did the testing explained to my husband and me that our son would always be the child off by himself on the playground. I want to use this blog over the next several months, or years, to help him be as successful socially as he has been (so far) academically. I'd like to see him graduate from College, not only with a degree, but with a nucleus of friends with whom he'll be able to socialize, bond and form long-lasting life partners.
My son was about 8 when he was diagnosed with Nonverbal Learning Disability ("NLD"). NLD is one of several social communication disorders that are on (or near) the autism spectrum. If you view autism as a tunnel, with profoundly autistic children and adults deep inside, those afflicted with NLD are very close to the edge, but not quite outside with the "neuro-typical" population.
People with NLD generally have difficulty with organizational skills, and can struggle in school with certain comprehension tasks, including written test and assignment directions. Verbal explanations can help. We were fortunate that our school district was well-equipped to give our son the support that he needs. He has been very successful in the classroom.
But this is to be mainly about pragmatic skills for Life, not the educational subset.
The neuro-psychologist who did the testing explained to my husband and me that our son would always be the child off by himself on the playground. I want to use this blog over the next several months, or years, to help him be as successful socially as he has been (so far) academically. I'd like to see him graduate from College, not only with a degree, but with a nucleus of friends with whom he'll be able to socialize, bond and form long-lasting life partners.
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