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Email a FriendMy husband sent me this same article in the NYT. I’m looking forward to looking it over. I’m sure there’s a lot of moms out there over-analyzing sometimes. It’s hard not to worry, but sometimes there are kids who are just a little out-there by nature, by God’s intention. Sometimes we need brains like that to accomplish great things.
Asperger Awareness
Was he on the spectrum, or just nerdy?
Posted by Rachel Balducci in Family on Thursday, February 02, 2012 1:17 PM
There’a an interesting article in the New York Times today written by a man who was (briefly) diagnosed with Asperger Syndrome in his late teens. Benjamin Nugent, author of American Nerd: The Story of My People, writes that when he was 17, he was judged to “fit the bill” of Asperger’s based on the diagnostic criteria.
And then, he grew up and moved to the big city and suddenly all of his issues sort of dissipated. He found a group of friends with similar interests and he was no longer on the outside looking in.
I’m fascinated by his story—and also his musings on how a similar diagnosis at a younger, more impressionable age would have affected him. If he had been diagnosed at age 12, would the extra years of “having Asperger’s” turned him into someone that, as it turns out, he was not?
It’s tricky as a parent to make sure we don’t jump to conclusions too fast. Please don’t misunderstand me—there are plenty of children out there who truly do have Asperger Syndrome, or ADD or ADHD. Getting testing and diagnosis (or not) from respected professionals is important.
As a mom of five boys, I will tell you that I’m learning to keep a balanced approach in the midst of this. Sometimes what might seem like a big, diagnosable issue turns out to be something with a smaller source. This also might be my own personality, my tendency to jump to an outer-edge conclusion. It’s the age-old motherhood dilemma of “Does little Johnny need medicine or is he not getting enough sleep?”
Case in point: a few years ago, a trusted, highly respected teacher worried that one of my boys might need glasses. She suggested we get his eyes checked because of some issues he was having in the classroom. The doctor checked his vision, declared it perfect, and then (based on what he saw of our boy in his office) wondered if he was bored in class. We brought this back to the teacher who tweaked some things in the classroom (where he was sitting, giving him some extra little challenges) and things improved. It wasn’t that the teacher had missed the boat—she wanted and needed to have all the information available to know exactly what she was dealing with.
When we’re dealing with issues of behavior and fitting in and schoolwork and all the other parenting challenges with our children, I’m continually amazed at how much is required of us. We have to be paying attention to details, assessing, stepping back and observing, relying on experts and then putting all the pieces together—douse it all with prayer and ask the Holy Spirit for guidance. We want to do right by these children, and it takes so, so much to get the job done.
Comments
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Posted by Elizabeth M on Thursday, Feb 2, 2012 4:22 PM (EDT):
Putting all of the pieces of information together IS hard. I’m going to share a bit from my perspective as the mother of a teen with Asperger’s. He was diagnosed when he was 12 and after all of the questionnaires and interviews and observations—it was clear. It was so clear that now we wonder why we (or teachers) didn’t put it all together much earlier. The signs were there. Former teachers weren’t really surprised….
For us, and our son, the diagnosis has helped a great deal, although we cannot afford the specialized treatments or therapies some find work. It changed our understanding of the battles we were having with him and had had for many years. He really DIDN’T understand our point or what we were mad at. Yes, he can be that smart and completely not get what we want or why we’re mad.
He is still the same boy both sweet and frustrating, but we understand more why he reacts the way he does and he’s starting to recognize that he shuts down in certain situations. So, we know better what to expect, we talk to him ahead of time, and we have plans for how to approach things. That’s the biggest difference. We’d been feeling at the end of our rope, frustrated and angry all.the.time. But, now even if we’re frustrated, we don’t have the feeling of helplessness.
We’ve gotten a lot of good support and have learned a lot from other parents and from books. Our son has more self awareness now and is working on better social understanding and at least not making assumptions about other kids. (He had been starting fights because he interpreted every joke or tease as “picking on” him. We know how preteen boys tease each other!)
Sorry to ramble. This was an interesting article and I can see how some traits could be misdiagnosed when they are really just an individual’s social stage.
But if you have doubts about your child, read and ask questions. There are some terrific books out there. Just know that not every child with Asperger’s is the same. They don’t ALL have every trait or express them the same way. But, in talking with other parents, there is a relief in finding you’re not alone! And neither is your child.
I do wish now we’d known earlier for our son. It would have saved us a lot of heartache and worry and would have been able to get him the help he needed at school sooner so he could have been properly challenged (he’s very bright) while addressing the behavior and focus issues he had.
Posted by Claire on Thursday, Feb 2, 2012 4:43 PM (EDT):
This is a huge struggle for me. I have a tendency to both over-analyze, and excuse or dismiss potential issues. It is so hard to find the balance. Ideally, I like the approach of treating the symptoms rather than labeling. But sometimes, a diagnosis is needed in order to determine how to approach treating the symptoms. It’s so hard.
Posted by StephC on Thursday, Feb 2, 2012 4:58 PM (EDT):
Yes re: treating the symptoms minus labels/diagnosis.
Example: We’ve come thru a rough patch with my 4 yo recently. What was most helpful for me was going to a trusted reference and reading up on oppositional defiant disorder & then proceeding to apply the strategies immediately.
Keeping a log or journal can be a helpful tool to keep things in perspective and look at the big picture over time, too.
Posted by Karen on Thursday, Feb 2, 2012 5:10 PM (EDT):
I am also the mother of a teen boy with Asperger’s. No doubt it is the diagnosis du jour. I have known parents who have pushed hard for an Asperger’s diagnosis usually because they want a reason their child isn’t like everyone else. They can’t accept that their son isn’t athletic and popular and may be a bit odd therefore there must be something WRONG, he can’t just be a little different. Also known of teachers that push for an AS diagnosis to get difficult (re: strong willed know it alls that aren’t easy to teach) out of their classrooms. Anyone who spends time with real Aspies can spot these pseudo-Aspies a mile away. It’s a real shame as it diminishes the struggles of kids with ASD’s and stretches already scarce services even thinner.
My son was diagnosed at 8. We knew from toddlerhood he was different and we were fine with that. Different isn’t a disease. Then around 7 things started to go downhill and we acknowledged that he was more than different when he started self-injuring and threatening to throw himself out a window because he wanted to die. Living in a world that he just couldn’t understand was overwhelming him. 8+ hours of 1-1 eval and assessments plus the psychologist spending another good 4 hours interviewing friends, family and teachers (quote different than the 1 page questionnaire and 10 minute appt with a developmental pediatrician that is the typical lead up to an AS diagnosis in my area currently) and we had a diagnosis of Asperger’s Syndrome and a handful of other diagnoses and provisional diagnoses.
Our journey since has been very similar to Elizabeth’s. Just knowing why our son was the way he was and learning about Aspergers went a long way to our peace as a family and parents. Our son did about a year of therapy which accomplished very little. The greatest thing for him has been time and maturity and growing self-awareness. Aspects of his Aspergers are a definite cross but not all of it. Some of it is a gift. Regardless, I love my son, with all his quirks and wouldn’t want to change him if I could. And we are blessed with some good people in his life that can see beyond the Asperger’s and see the smart, good, awesome young man inside.
Posted by Kathleen on Thursday, Feb 2, 2012 5:24 PM (EDT):
don’t forget, this young man’s mother was a researcher in the field. Sometimes to the person with a hammer, everything looks like a nail. It is hard to be objective about your own child. Our son was “different” from day one but we figured that was just his personality. As he got older and his language development was very atypical, and his interaction with other kids was negligible, we became concerned. He was born in 1994, the year the DSM-!V definitions of “autism spectrum disorder” were published. There was not a lot of awareness on the pediatrician/nursery school teacher level. The dx was a relief for us because then we began to learn how to help him. It is never ending. Asperger’s is more than just “quirkiness”, it is a different neurological structure which shows itself in behaviors. My heart goes out to all parents who struggle with behavior issues no matter the source. pS my captcha is “enough56” and I laughed because there is never enough—time, resources, understanding and knowledge. but we keep going. Thank you all for the support I have found here.
Posted by RealMom4Life on Thursday, Feb 2, 2012 6:01 PM (EDT):
A friend of mine has a son diagnosed in 2nd grade. He had just switched schools, was quite intelligent, very “quirky”, couldn’t fit in with the other kids, etc. By the following year he showed no signs and she was fighting to have the label removed from his school records. Now, at age 13 you wouldn’t know him from any other kid in the group. So yes, I agree there are kids out there who have asperger’s, add, etc. But I also think things are way over diagnosed. I think in the end it hurts both the children who were misdiagnosed as well as those who truly have the “disorder” and need our help and understanding.
Posted by K on Thursday, Feb 2, 2012 10:26 PM (EDT):
A friend of mine recently posted this article about two young people on the autism spectrum trying to navigate love and young adulthood. Very nicely done, I thought.
http://www.nytimes.com/2011/12/26/us/navigating-love-and-autism.html
It’s a sensitive issue for me, with the new proposed diagnostic criteria for autism spectrum disorders. I have a son who is considered low-functioning because at 3 he is essentially non-verbal, and I have a 4.5 year old daughter who displays many criteria for Asperger’s but does not yet qualify for anything except language therapy (her issue is in social language, not vocabulary or pronunciation.) I guess I would rather see kids over-diagnosed than under-diagnosed because at least no one is falling through the cracks. I can easily see an undiagnosed child with asperger’s or autism being simply called badly behaved, “nerdy”, etc. and not getting the help he or she needs to function in group settings.
Posted by Michelle on Friday, Feb 3, 2012 6:48 PM (EDT):
My son was diagnosed with AS when he was 9. I don’t want to write a long post here, but he was exhibiting all of the typical behavior of someone with AS. He is 13 now I am not so sure that he is AS - maybe just nerdy, quirky and different. (His differences do not bother my husband or I at all.) However, he was also treated by peers the exact way other AS kids are treated. Bullied, harassed, tormented, teased, etc. To me, HE is not the one with the problem. It’s how so called “perfect” kids treat “different” kids and how the so called “perfect” kids have parents who teach them to act superior to others. Being different is OK, treating a kid like crap for being different is not OK.
Posted by karen on Friday, Feb 3, 2012 7:36 PM (EDT):
I can only imagine what would have happened to my son had we put him in school. The psycholgist who diagnosed Ian had never dealt with a homeschool family before. After all was said and dine she told us that homeschooling wad the best thing we could do because “he would be eaten alive” in school. I’m not saying all AS kids should be Homeschooled. Lord knows it isn’t easy. My heart just aches for AS kids, in any environment that have to live day-day with bullying. My son has a hard enough time dealing with social situations with good people, how much harder would it be if he had to navigate bullies and cruelty too. Now he is old enough and mature enough that he can brush stuff off but when he was little? It would have throen him into a spiral of depression and anxiety.
Posted by Michelle on Friday, Feb 3, 2012 8:25 PM (EDT):
We dealt with some very sad issues as a result of the bullying (in addition to bullying, he was physically attacked and beat up at least 3 times while in middle school). All of this bullying and assault was in the name of our son being “weird.” By weird, I mean an enthusiastic math and science geek, uninterested in sports and very clumsy when it comes sports. Immature in his likes and dislikes, for example he is 13 and still LOVES Legos and Star Wars. These things that made him “weird” in the eyes of his peers make him HIM! and his family loves him for HIM! We ended up pulling him out of school and homeschooling. It was a great decision because now he has real friends and he isn’t abused by peers anymore. As a result of this, we homeschool all of our children and it has been a blessing. God works in mysterious ways…but I truly believe addressing who and who does not fit the Autism mold will not solve the problem - but TRUE zero tolerance policies on bullying will help tremendously in making “different” OK.
Posted by Chiming in re: playing and being different on Saturday, Feb 4, 2012 12:14 AM (EDT):
This is only tangentially related, but I’m just wondering, is it really odd for a 13 yr old boy to like legos and Star Wars? I have read that toy companies used to make toys for kids up to about 14. My oldest dd was still playing with American Girl dolls until high school—because she had two younger sisters who played. (The youngest sadly stopped around age 10.) Maybe we expect kids to grow up more quickly than they would if unfettered by marketing and social expectations?
Psychologist David Elkind says that in the past 50 years, the definition of “normal” for children has narrowed. He recalls being in a preschool classroom decades ago and watching a little boy bounce all around the room. The preschool teacher smiled and labeled him “all boy”. Dr. Elkind wrote that the same child would today be considered abnormal, a behavior problem.
I say that, not to deny Asperger’s, but as a thought about what we consider healthy, and musing about whether our societal standards are dangerous for kids who are healthy but “outside the box”.
Posted by RealMom4Life on Saturday, Feb 4, 2012 4:01 PM (EDT):
to chiming in. my 14 yr old still plays with legos with his younger brothers or friends. just plays differently with them now that he’s older, and his creations are more elaborate. It may be one indicator (I really don’t know - none of my kids have AS) but I don’t think one indicator like this is anything to worry about.
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