Diagnosis: Asperger’s

For those playing along at home, Kiddo#1 is ten, and he’s the one who figured out how many licks it takes to get to the center of a Tootsie Pop.

Kiddo#1 has always been atypical, and after five therapists, two psychopharmicologists, a psychiatrist, a neurologist, and a neuropsychologist (only the last two really took things seriously) we finally have an answer.

Diagnosis: Asperger’s
Co-diagnosis: anxiety disorder

Biggest problem: executive function regulation (prioritizing, regulating thoughts and emotions, etc)
Other problem: recognizing feelings and thoughts of others, excessive rigidity, relying on rote memory to compensate for lack of executive function

Recommendation: tons and tons of special interventions on the social level
Also recommended: Prozac

For the last few days, Kiddo#1 has been having tragic meltdowns that begin when he gets home from school, escalate rapidly to violence against his younger siblings and threats (and yes, threats against me too. He told me he’d wait until I fell asleep and then stab me five times) and paranoid delusions that we’re trying to kill him. These episodes were set off by Kiddo#2 asking if she could play in the snow on Monday, and Kiddo#3 saying “Hello!” when he came home on Tuesday.

Yesterday I prevented a meltdown after school by going to the school at 3pm and *making* the kid eat in the office. Since he won’t eat at home, and he needs to, I figured we’d head that off, and he won’t make a scene there (although he was snooty to me). He ate the stupid bag of potato chips and then went back to class, but you know, it *worked.* He came home sweet as punch and was great for the sitter. I’ve put a note in with the school that it is mandatory that the child eat something before going home. Period.

The neuropsych said that absolutely I am to call the police if he gets out of control again.

We have a meeting with a GI doc next week to talk about gluten intolerance. It may also be that because he’s unable to prioritize issues, he reacts to “I’m a little hungry” with the same force as “I’m dying” or “I’ve been shot!” and can’t cope. I’m told some individuals with Asperger’s don’t have a sense of their own physical needs until they hit a crisis point, and that may be an issue with him. He may *need* to eat on a schedule simply to prevent hunger.

The neuropsych described him exactly, btw. She was really sharp at the stuff she picked up about him and how she explained it all, and she said she knew the moment he walked into the office that 15 medical professionals and tons more educators had dropped the ball with him. He is very smart (I now have numbers for his IQ) and he’s been able to compensate by relying on rote memory so far, but that can’t keep you going forever, and the maladaptive strategies he’s learned in order to compensate are at a breaking point of their own.

Because he reacts by rote, rather than by responding to cues, traditional insight-oriented therapy isn’t going to work for him. Quite simply, he has no insight. He doesn’t recognize his own feelings, and he expresses no positive feelings. His affect is flat except for when he’s angry or upset. We need to find a specialist who works with a lot of kids who have Asperger’s and will train him to do things like recognize facial expressions and give him a script for how to respond to certain facial expressions. (ie, “This is a sad face. When you see a face that looks like this, you should know the person is not happy and say, Why are you sad? Can I help you?“)

He can’t turn a question inside out in his head even when he knows the information. For example, if you say that in 1960 a girl won a silver medal, and in 1961 she won a gold medal, and because of the gold medal she went to a competition in Switzerland, he can tell you what happened in each year, but he can’t tell you what happened the year before she went to Switzerland.

Or if you ask a typical kid to write an essay about a cat, the child will organize the information naturally into certain structures: “A cat is an animal. It has fur and walks on four legs. Some cats are owned and some are wild…” Kiddo#1 gives all information the same priority and can’t organize it, so his essay might look like, “Some cats are tabbies. Lions are related to cats. Our three cats are Eenie, Meenie and Mienie. Cats do not like to swim.” And so on.

You never want something to be wrong with your kid, but I knew something *was* and it’s good to at least have a name and a starting point. This is hardly the worst thing she could have diagnosed (I scared myself by looking up the symptoms of childhood schizophrenia). Today’s assignment is to start getting in contact with the support organizations and get some books so I can get some better coping strategies and start equipping him with them too.

[Edited two days later to add: I’ve written an updated reflection on what this means for him.]


  1. netspeed

    Good for you for pressing on until you found a good doctor!

    Kiddo #1’s aptitude for rote memorization might give him in an edge in a trivium-style education, if the modern way isn’t cutting it. I’ve heard that there are some schools that still teach the trivium, but I don’t know where. Take me with a grain of salt: as usual, I have no idea what I’m talking about.

    Life with Asperger’s has its challenges, but it also has its own joyful surprises, and in any case, it is good to have the right diagnosis, so you can start getting him (and your family) into a good framework.

    Don’t forget to bounce ideas off of your hordes of readers, too. I’ll be happy to chip in with such helpful advice as: “Holy smoke! I have no idea” and “Man, oh man, that’s a stumper.” In fact, my entire child-rearing philosophy is kind of summed up in those two responses.

    I’m good like that. Which is probably why my children stay so reared.

    So, uh, yeah. I’m not helpful. At all. You can thank me later.

  2. Olivia

    Thank goodness you’ve found the answer! (I’d add something witty, but it’s after 2 am at my house. Can I get a cheer for pregnancy-related insomnia?)

  3. whiskers

    I’m so sorry that there is anything at all wrong. Let me know if there is anything I can say/do to help.

  4. knit_tgz

    I don’t know much about Asperger’s, but what I know is that it is much better than schizophrenia. I hope things will start looking brighter, I especially hope you all will be able to prevent more meltdowns.

    And on a brighter note: the story about finding how many licks it takes to lick a pop is very very close to my heart. I never did that, but I was the kind of child that would do that 🙂

  5. CricketB

    So glad it’s not something worse. It looks like they can use the diagnosis to predict his behaviour — which means it’s probably the right one.

    Now you can predict how he’ll react to your actions, which also helps.

    Interesting about not sensing his physical needs until they’re a crisis, although that’s also common with ADHD. I suspect I’ll use you as a resource for my own son. Milder Aspergers’ is often not distinguishable from “ADHD and something else” until early teens. So keep writing! These bits are much more digestible than the rest of the internet or the library, and likely to be more current as well.

    I can see how he’d be anxious, if he has those problems. Hopefully dealing with them and the blood sugar will help him out of that cycle.

    There are a ton of famous, intelligent people with it. The guy who invented Bit Torrent. The guy who did those awesome guitars for that rock band.

    Prayers that everyone survives the next phase, “big changes based on diagnosis” intact.

  6. CricketB

    A few more thoughts, including one more thing for you to think about (as if you don’t have enough already) and more research (again, as if you don’t have enough to do already).

    I know Kiddo#1 was in karate. The most effective moves are becoming reflex, and that may not be the best if he can’t control himself during a meltdown (which I think is the case) or a particularly strong delusional episode.

    On the other hand, karate is great for brain hemisphere balance, confidence, self-discipline, focus and goal-setting, and letting out frustration. Katas are a great form of meditation. Also, taking him out could look like a punishment because of the AS. Welcome to life as a parent … there is no right answer.

    I agree that you should call the police if no one else is available. The safety of those around him is important, and by not defending yourself you are setting a bad example to your other kids.

    However, the police may not be the right ones to call. My brother worked in a low-end homeless shelter. You know the type, the one of last resort. Clients had mental problems of all sorts (with a variety of causes). He had to call cops every week or so. One team was good, but most had no sympathy or respect or patience, treating the patient as an intentionally violent criminal.

    Is there a mental crisis team in your area, or another group with more appropriate training and attitudes? Do they recommend a meeting before any crisis, so your kids recognize them and know to call them? Can they set up a file, so they have his history ready? This violence and delusion thing has me worried.

    I’d look into this before the new baby arrives. The stress of Mom giving birth and a new baby is still stress, and all kids have less resilience when under stress.

    Good call on the food! Can you have him formally declared hypoglycemic, and the food “necessary medication”? If the overworked school secretary is skeptical, you may need the extra oomph. (I’ve seen very cavalier attitudes towards medications and diet. In Ontario I’d make it religious — they take that seriously.)

    Prayers to all.

  7. david

    Asperger’s is not a syndrome – it’s more accurately described as an effect that wos originally an attempt to understand aspects of extreme GIFTEDNESS. Unfortunately, this category has been taken over by Big Pharma to sell still more drugs and get even richer by exploiting you and your parental anxieties.

    I am similar to many ‘aspies’ in that I identify with my gifts and am proud of them. Though I know that there are social deficits which I need to manage, education has made me aware of them so I deal. My employers are thrilled with my ability to see things that most people cannot and I am reasonably well compensated for my abilities. I am 56, and wish I had come to this discovery sooner.

    About medications: they create far more problems than they solve. My children are also gifted, but one of them was given medications and prescribed an ever increasing complex of medications which made her behavior more bizarre…until she sought help in a psych unit on the way home from graduating with a degree. Off medication for a year now, she is healthy, happy and functional again. Mood stabilizers don’t, Prozac and its ilk are irresponsibly dangerous, and mixing any combination of drugs is an experiment in which your child is the guinea pig and the result could be tragic.

    Accept your child’s giftedness…look for what’s RIGHT. And build from there.

  8. Sara

    wow – the Wheat Gluten thing could really help. I’ve watched a few things (on Oprah) and have talked with people about how their child’s behavior definitely improved after they took out all gluten.
    Good luck if you go that route. Thankfully today there are so many avenues that we can take as parents to help our kids along if they need extra help that weren’t available when we were kids.

  9. sara

    about the recognizing facial responses and how to respond – that is all done thru speech classes in public school. i know my son did and it was wonderful- there’s no way i have the patience to do that at home – besides speech specialists usually love what they do and have resources that parents don’t…good luck!

  10. The Sojourner

    “It may also be that because he’s unable to prioritize issues, he reacts to “I’m a little hungry” with the same force as “I’m dying” or “I’ve been shot!” and can’t cope. I’m told some individuals with Asperger’s don’t have a sense of their own physical needs until they hit a crisis point.”

    I typed up an excessively detailed comment and then accidentally deleted it, so I’ll just say the first sentence, which is that this point pretty much just revolutionized my life. So thanks for posting, and I apologize for commenting on a three-year-old post.

    1. philangelus

      Thanks for commenting, and glad to have helped. It’s very strange from an outsider’s point of view to realize that my son is just so not in-touch with his own body that he can’t recognize that he’s tired, sick, or hungry.