The Most Puzzling Puzzle in the History of Puzzles


So I'm trying to write this important post, and I don't even know where to begin.

I mean ... what do you say when you're told your son may be autistic?

I guess the first thing I thought was, "Oh. I guess that explains it."

I know I have like ten million sons (okay, just the four, but still) and you're probably wondering which one I'm referring to. Surprisingly, it's not my paper-eating five-year-old. (I know y'all were thinking, "It's got to be Cameron.") But no: I'm talking about Colin. My oldest. My almost-eight-year-old.

Many of you have been with me for a long time and know how Colin is. He's wonderful, first and foremost. "Bright" doesn't even cover it - the kid is sharp as a tack. At age four, we had him tested for giftedness, and he scored in the 99th percentile in several different areas. When he was in Kindergarten, he came home discouraged because the librarian wouldn't let him research "harlequin ichthyosis" on the computer (that's a congenital skin disorder, if - like me - you had no idea). He taught me where the cervical spine is located, and what shoulder dystocia is, and likened the stems of his cluster of grapes to the alveoli inside the lungs. These days, his interests have shifted to computer-related things, and he manipulates code like nobody's business.

But in school? He's floundering. In fact, he recently scored below grade level on one of the standardized tests - because, his teacher said, he is literally unable to pay attention for long enough to follow directions. Like, she'd read the questions out loud and the kids were supposed to mark the answer and wait for the next question; but Colin, off in la-la-land, had already filled in like the next six boxes, before the question had even been read - hence the score. There's something every day. It's the same maddening cycle we've been dealing with since he started school (see here and here), and though it ebbs and flows a little bit, it seems to have gotten worse this year. He's never had problems making friends, but his teacher tells Curtis and I that kids are starting to not want to be paired up with Colin for team projects because they know he'll just zone out and not do his part.

And I don't want any of this for him.

A few weeks ago we had a meeting with his regular classroom teacher, his gifted teacher, his principal, and the school psychologist to discuss what we could do to help him. We went in prepared to hear the inevitable, "We think he has ADD, blah blah blah." But then, Asperger's Syndrome - an autism spectrum disorder - was brought up. And a couple of the puzzle pieces went sliding into place.

See, there have always been a few quirks about Colin. One, he didn't sleep through the night until he was four years old (seriously. It's no wonder I'm half-crazy). Two, he doesn't get dizzy - like ever. Three, he despises the feeling of tags on his skin and insists that every tag be cut out of every piece of clothing. Four, he walks on his tiptoes almost all the time unless he's wearing shoes. And on separate occasions, I have researched all these things just out of curiosity. And on all counts, the search results have always mentioned autism. But I brushed that off because I was ignorant. When I heard the word "autism" I was guilty of thinking about someone who was unable to function for themselves, and my child was the total opposite of that - right?

Right.

But that doesn't mean I wasn't wrong.

Autism spectrum disorders are just that: on a spectrum. Which means that, while there are people with autism who can barely function, there are those on the other end of the scale that just have a few "symptoms" to deal with.

The psychologist gave Curtis and I an extensive questionnaire to fill out, and one to his teacher. Based on the results, he is "Very Likely" to have Asperger's. We've got to take him to an independent psychologist to get an official diagnosis, but as of right now, that's what it seems to be leaning toward.

So now we have to figure out what to do ... how to address this ... how to help our son. And just when I think I'm comfortable with that - with the fact that he might possibly fall onto the autism spectrum - I read articles like this which basically talk about how gifted children are so often misdiagnosed as autistic or ADHD. And any confidence I had built up just sort of crumbles.

Why can't this crap be easy? Any words of wisdom for a fellow (ridiculously clueless) parent?


19 comments:

  1. This sounds exactly like my daughter -minus the not sleeping through the night. I thought because she was so smart school would be a breeze but starting in preschool I was in every week talking about behavior issues related to lack of focus.

    She is in 2nd grade this year and does poorly on any work that requires her to sit still and not daydream.

    This is what I do: I recognize our/the schools' standards for the kids encroach upon the innate need to wiggle and be active. A solution to this is to get them a fidget (google fidget pencil topper). This is great for auditory/hands on learners because it gives them a tangible outlet of focus.

    Also I found an all natural product that helps with focusing. I just put some on her in the morning before school and then when she is doing her homework-- if I forget to put in on before homework she DOES ask for it. I have noticed a substantial difference in her ability to focus.

    A ton of it is just finding what works for your kid and getting a teacher who is supportive/helpful in finding solutions other than a diagnosis. Feel free to email to discuss it further cjsime007 at gmail dot com

    ReplyDelete
  2. He may not have autism. And before I get innunfated with hate mail for "denying him help he needs" or any such thing I would draw the audiences attention the "may not" in that statement. My expirience with my own son started off the way yours has. He was bilingual and fairly adept at sign language by age 5, and in kindergarten was reading dr suess books to his class. My husband and i had even gone over some basic algebra which he loved.However, by 4th grade he was a disruption because he finished assignments too soon and bothered his friends because he was bores or didnt do the assignment at all. Like you said, they wanted him to write "Hi, how are you? My name is..." when in one particular instancw rhe night before he had written about a robot fron outer space who took over for Santa one year. After parent teacher conferences innumerable and MANY unpleasant meetings with an unresponsive school adminustration, and begging "experts" to stop throwing diagnosis after diagnosis and medication after medication at a boy who was just too smart and fast to fit in, I was fed up. My son was not going to grow up believing something was wrong with him just because it wasnt convinient for him to learn differently (and really how hard is it to just move him up a grade so he is challenged?) . I had his IQ tested (off the charts) and he was took an independent placement study (one NOT handed out by the school who wants to earn grants and funding for so many kids per class) took both those results to a different public school in town and convinced them to move him up just one grade. Six months later they moved him up another. He is now a junior, top of his class and we have not had a behavioral problem since. I am not bashing the public school system or saying they are just alk trying to get money but I am begging you from one mother to another to get him tested independently, outside of school. My son was in shambles in 4th grade, convinced he was stupid. I just dont want that to happen to any other beautiful little boy

    ReplyDelete
  3. Not sure if you follow Amber over at Airing My Dirty Laundry One Sock at a Time, but you might want to reach out to her. Her son is going through the same thing. She's got a great outlook and positively hilarious to boot. Might make you feel better talking with someone who's going through it.

    http://whisperingwriter.blogspot.com/

    ReplyDelete
  4. I'm not an expert, just a Mama, but I say follow your instincts. You know this kid better than anyone - ANYONE - or any test, so go with whatever feels right to you. He sounds pretty exceptional to me, but you already know that :) Whatever you do with his best interests in mind will be the right thing.

    ReplyDelete
  5. Your son sounds a LOT like my 10 year old son, and my son is also on the extreme side of giftedness and was diagnosed with Asperger's Syndrome when he was 3. The big difference I'm noticing in your post is that you don't mention him being socially inept or awkward. That is the main piece of the autism diagnosis from one end of the spectrum to the other. I'd say your boy definitely has some sensory issues (the bible on working through those is The Out-of-Sync by Carol Kranowitz). A lot of the other things you mention can be explained by your child being exceptionally gifted--zoning out in particular. He's dreaming the dreams of a genius, and that's where his mind may be during testing and school and such. My son has had several years of quite serious intervention, and is doing well, but he is still socially awkward. As the rules change among relationships between children, we have to start again to teach him the appropriate way to act around people. That is the thing about my boy that gives me confidence that we have the right diagnosis.

    Honestly, I'm not sure that I'd worry about the diagnosis at this point. Whether it's ADHD or Asperger's or Sensory Processing Disorder or geniusness or nothing at all, your school district is now going to address your child's specific needs and help is on the way. Mostly, I find that having a diagnosis is more common than not among kids, and the stigmas of the past are fading. I'd work on addressing his individual issues and celebrating his individual gifts and you'll be doing the right thing. You obviously love your children, and I think your boy will be fine because of that more than anything else.

    Take care and try not to worry it too much.

    ReplyDelete
  6. Colin has wonderful parents, a great home, and an extended family who love him very much. It hurts me to see him get labeled, and to see you hurting for your child. Test for everything you can, and start with his food. Tell the doctor why you need to know about any food allergies. Your kids have a healthy diet, but even common foods can be dangerous for some people. Then give him all the "disorder" testing you need to do. At least the diet change may lessen the dosage necessary if they need to put him on meds. And who knows? It might just be a simple solution we hadn't thought of before! Meanwhile, keep us informed of your findings and don't try to go through this alone. Lots of people are willing to listen and help! Love you all SO much!

    ReplyDelete
  7. Hey! I can tell you that we have gone through a lot with Zane as well. After many tests he finally has a diagnosis of ADD, depression, and mild autism to go along with his being gifted as well. In other words...he's complicated! Zane wasn't accepted into gifted until this year, when he was on meds and able to focus on the test and scored 145... Gifted has been great for him!

    Now as a teacher I will tell you that there are some kids where you can barely tell there is autism at all! He may just receive some services to help him with things.

    I would be happy to talk to you more in detail if you're interested. Just remember that he isn't some new kid who has changed. He's still your sweet, smart, beautiful, fantastic little boy. Take care.

    ReplyDelete
  8. Hey! I can tell you that we have gone through a lot with Zane as well. After many tests he finally has a diagnosis of ADD, depression, and mild autism to go along with his being gifted as well. In other words...he's complicated! Zane wasn't accepted into gifted until this year, when he was on meds and able to focus on the test and scored 145... Gifted has been great for him!

    Now as a teacher I will tell you that there are some kids where you can barely tell there is autism at all! He may just receive some services to help him with things.

    I would be happy to talk to you more in detail if you're interested. Just remember that he isn't some new kid who has changed. He's still your sweet, smart, beautiful, fantastic little boy. Take care.

    ReplyDelete
  9. We're seeing a lot of the same things with our eldest. You're not alone.

    ReplyDelete
  10. My 11yo has Aspergers, I know it is scary, but you have already been dealing with it, you just didn't know it. His behavior isn't going to suddenly change with a diagnosis. This just means you will be able to get assistance. Stay strong, everything happens for a reason :)

    ReplyDelete
  11. Hi Rita, I have been reading your blog for a year or so now but this is my first comment. Coming out of lurker-land to say that I feel for you and sort-of know what you're going through. My oldest son is 4 and has so many similarities with Colin. I have been doing a ton of reading about my son's behavior, likes and dislikes, and I am beginning to see that he falls on the Aspergers spectrum as well. Like the comment above, a diagnosis doesn't change our beloved children, just gives us a name for what we couldn't pinpoint before and will give us help. It's scary to think of, but we can deal with this!

    ReplyDelete
  12. Rita, I have no pearls of wisdom. Other than you have a lot of great ideas and support here. You are a fantastic mother and Colin has a fantastic father. The two of you will do the right thing for Colin because only you guys know what 'right' is for him. Sending hugs and prayers for you guys!

    ReplyDelete
  13. I would look into testing. Either through the school or privately. Just so you know for sure what you are dealing with- it just helps give you a better understanding and the school ways to help.

    My middle son has PDD-NOS, which is on the autism spectrum. He's still the same little dude, but it has helped to have some sort of idea of the why behind some of his behaviors.

    ReplyDelete
  14. Oh and I tried to comment earlier when I came over for fb, but I think my phone was being weird. But if you have multiple comments from me, that's why. ;)

    ReplyDelete
  15. Another lurker chiming in: it just doesn't matter if he is diagnosed or not, he is who he is. Testing and getting a diagnosis will likely be helpful to open a world of strategies that have worked with children with similar characteristics and let you pursue some great teachers with awesome strategies to help him succeed, not necessarily just in school, but succeed interacting in life. Any child can benefit from this.

    ReplyDelete
  16. Could be autism, could be ADHD, could be gifted, or could be Sensory Processing Disorder - or some combination of these. So take your time, trust your gut and get a few evaluations under your belt to help you peel the onion. Neuropsych evaluation, OT evaluation to rule out or confirm SPD and for any of the evals, try to find a group that is experienced in diagnosing gifted kids so you don't have to wonder about that part as well. You are in MD, right? Call Rich Weinfeld and tell him Annette sent you. He works with 2e kids everyday and his practice is experienced in this discovery process with gifted kids. My son has both ADHD (inattentive and hyperactive), SPD and is gifted in some areas - that is what has been diagnosed so far. My suspicion is that someday in his future, ASD will be added to the mix. The label matters less than figuring out how to accommodate his needs in school - and doing so before it impacts his self-esteem. You got this mama!!

    ReplyDelete
  17. I have an 11 year old son that was diagnosed with Aspergers at 5. I am happy to walk you through this and answer any questions you may have. Just an FYI- many Asperger kids are geniuses. It goes along with the diagnosis and if he has other characterisitics that fit the spectrum, then you are on the right path. The MOST IMPORTANT thing to know is that Colin is the same boy he was before the diagnosis as he is after the diagnosis. You will love him no less than you did before and maybe even a little more. PLEASE feel free to email me with questions, heartache, confusion, and/or joy. Yes, there will be joy. My boy astounds me everyday and I learn more from him than he does from me. ((Hugs))

    ReplyDelete
  18. I'm a child therapist and the tip toes and tags are classic. Does he also flap his arms a lot? Remember, there are lots of folks with A. that have had amazing lives-bill gates, probably Einstein, etc. A formal dx would. Open up free school services, like occupational therapy and speech to work on walking, socil skills, etc.

    ReplyDelete
  19. I just saw this post. I know it's hard. My son has Aspergers and he struggles. He does not have a high IQ but he is very bright in certain subjects. Like weather. He can talk your ear off about clouds but if you ask him about his day, he clams up. Social situations are tough but he is improving. If you ever want to talk about this, my e-mail is Princess543@yahoo.com. I don't think I have you on Facebook either. I'm there as Amber Myers if you want to add.

    ReplyDelete

Commenting makes you big and strong! Okay, maybe just strong. Okay, so it's only your fingers. But still ...

Sharethis

Blog Widget by LinkWithin