As you know, we recently received a diagnosis of autism spectrum disorder for BeBop. I adore the psychologist who diagnosed him. She was warm and empathetic. She gave us a wealth of information, but she also listened to us talk. In fact, we went almost 45 minutes over our appointment and I was the one to stop the session because I needed to call the sitter to let her know we’d be late. They were turning off the lights in the building as we left her office. But my favorite thing about her was that she related all of the information she gave us specifically to BeBop. That was not our experience with BamBam’s evaluation (in a different department within the same university. I know, it’s weird that they have two separate places in the same institution who do autism diagnosis. I don’t get it either.). With BamBam, it was like pulling teeth to get them to say something specific about him. Other than the summaries of other practitioners’ observations, the report contained nothing specific about him; as if the evaluators had never even met him in person. But I digress…
Excuse me while I get a little technical for a moment. There are five disorders that fall under the autism spectrum umbrella: Asperger’s disorder (aka Asperger syndrome), autistic disorder (aka classic autism), PDDNOS (pervasive developmental delay not otherwise specified), Rhett syndrome, and childhood dissociative disorder. There was never any question that he had the last two, so I’ll only talk about the first three. It’s a pretty common belief that a particular diagnosis depends on the severity, e.g. someone with autistic disorder is more severely affected than someone with Asperger syndrome, but that’s not true.
The diagnosis criteria has three categories containing four symptoms each (total of 12 symptoms). For a diagnosis of autism, you have to display at least six of the twelve symptoms, fall into the pattern (at least two in category one, and at least one in each of the other two categories), and at least one of these has to have been present before age three. An Asperger syndrome diagnosis doesn’t require as many symptoms, but it does require that there not be a “clinically significant general delay in language.” this is actually why I thought BeBop couldn’t have Asperger’s, until I learned that a language delay is not clinically significant if the child had one word by age two and two words by age three. BamBam meets that, but not BeBop, so Asperger’s was back in the game. PDDNOS is diagnosed when the person has some of the symptoms, but doesn’t meet the specific criteria for any of the other disorders on the spectrum.
Going in to the appointment with Dr. X, I was pretty sure that BeBop had PDDNOS. At the start of the results session, she spent a long time going over each of the symptoms and how BeBop fit in to them. Or how he didn’t fit in to them. Or how he sort of did and sort of didn’t, which explains why I’ve been waffling on this for so long and why most people who meet him think I’m crazy to suggest he’s autistic. Eye contact, for instance. Dr. X explained that it’s not that he doesn’t make eye contact, it’s the lack of consistency and flexibility with which he makes it.
I thought that cemented the PDDNOS diagnosis, so I was pretty taken aback when she said autistic disorder. I asked if she was sure and she said that she was. She went on to explain that she could probably justify diagnosing him with PDDNOS or Asperger syndrome, but that the number and pattern of symptoms pushed her toward autistic disorder. I also learned later (she may have explained it at the time but I just didn’t hear it) from a book she recommended that when you meet the criteria for autistic disorder, that’s always the diagnosis, even if you also meet the criteria for Asperger syndrome.
As for high functioning or mild-moderate-severe, those are not terms that will be included in her report. As I said, people tend to think of one diagnosis or another meaning the person is higher functioning, but that’s not true. The different diagnoses relate to the number of symptoms, not the severity. A person who fits the autistic disorder criteria with seven symptoms could be more mildly affected than someone who only exhibits one or two symptoms that he or she experiences so severely that they interfere more with his or her life/development.
Furthermore, high functioning actually refers to cognitive abilities. A person can meet the criteria for an autism diagnosis, but have relatively normal thinking, learning, and language skills. They no longer put this term in the diagnostic report, however, because it can be misleading. People can interpret it as meaning one child isn’t as severely affected as another, so doesn’t need services. But that’s not necessarily the case. A high functioning child will still need accommodations in the classroom, even if it’s not as immediately apparent what those will be.
So we learned at the meeting with Dr. X that BeBop has high functioning autistic disorder. I learned that when looking for books that will help me understand and advocate for him I should choose those concerned with Asperger syndrome and high functioning autism. Dr. X also told us that BeBop is mild to moderately affected, which came as a big surprise to me. She said the moderate part is because of how much anxiety his symptoms cause him. I can totally see that. We also got lots of information and resources from Dr. X on how to help BeBop, help us all really, to mitigate and deal with his specific symptoms of his diagnosis. And that’s part of my relief, too.
I’d like to close this post with a few things this diagnosis has helped me understand about my son, BeBop:
•He only understands his own agenda, which is why it sometimes seems that he’s oppositional. It’s why he has such difficulty with transitions. It’s why his teachers may think he is purposefully belligerent when he’s really not, he just doesn’t understand that they have an agenda thats different from his. Oh my, what an epiphany for me. I got a solidifying example during carpool the morning after his diagnosis.
BC Maven’s son, I’ll call him J, was riding with us and the kids were watching an episode of Curious George on the DVD player in the van. That’s right, I use the DVD player in the van to keep the children occupied – don’t judge! Anyway, it was the episode where George is trying to prove that the cat in the restaurant did not make the scratches on the booths. Diners watching him assume he’s doing various things: one couple thinks he’s a waiter, another woman thinks he’s a restaurant critic, you get the idea. This is the conversation I hear from the back of the van:
J: That’s so funny! It looks like he’s taking their order.
BeBop: He’s solving the problem.
J: They think he’s the waiter.
BeBop: No, he’s solving the problem.
When I related this conversation to BC Maven, she said that J only knew about the waiter thing because she had recently explained it to him. But that only further proved my point because I’ve also explained it to BeBop. J was explaining it to BeBop. To no avail because BeBop can’t understand that there could be an agenda other than the one clearly stated for George, who I think he sees as himself in this situation. Furthermore, he can’t see that other people might not understand what George’s agenda was and might have their own ideas about what he was doing.
Which brings me to my next aha moment (do I need a little c or TM mark after that? Maybe I just have to send Oprah some money…):
•He is a concrete thinker. He just doesn’t get nuance or inference. Here’s an example from last week. We were headed to the water park on the fourth to meet some friends for water play and a picnic lunch. BamBam had been a particular challenge the day before*, so Sparky and I didn’t manage to get our act together in advance to prepare a lunch. We stopped at a grocery store on the way to pick up some lunch without remembering to tell BeBop we were making a stop before the water park. This is the resulting conversation:
BeBop: Why are we going here?
Sparky: We need to get some food for the picnic.
BeBop: Why are we going here?
Me: We are going in the grocery store to get food for our picnic.
BeBop: Okay.
See how subtle that is? He couldn’t understand what Sparky was inferring; he needed a concrete explanation. He doesn’t understand inference, nuance, metaphor, allusion, idiom, or (GASP!) sarcasm. I think the sarcasm part may have been designed specifically for me as revenge for my college roommate. She had never been exposed to sarcasm prior to meeting me and I think she might feel that our freshman year together violated the Geneva convention. Sorry Julie.
•He may use unusual or repetitive language. It’s one of the symptoms under the communication category. He did this early on, repeating back anything you said to him word for word. It’s called echolalia. But he stopped doing it not long after we got him into OT and speech therapy. One thing he still does is quote a lot of movie/TV dialog. Any of you who know me probably know that this would not make him stick out in our family. What it did do was make me wonder if it was just heredity or if this, too, was a form of echolalia. Much of his play was also derived from media or book plot-lines, so I wondered about his imaginative play. And recently he began speaking in third person limited dialog tags. You know, he’d say things like, “”Don’t touch that,” he shouted.” As a writer, this actually made me kind of proud. But as a mother, it just added more fuel to the internal is-he-or-isn’t-he debate.
But then I talked to Dr. X about it and saw the descriptions of the symptoms in the diagnostic criteria. The one that relieved me says, “Repeating from videos, books, or commercials at inappropriate times or out of context.” Now I that I know that it is a symptom, I can let it go. Now I can just see it as a way he fits in to our family. Now it can go back to just being one of my favorite things about him.**
BeBop and friends
*BamBam was actually quite a challenge at the water park as well. I felt limited by him that day. When I said that to Sparky, he was surprised to find that I don’t usually feel limited. I don’t, though. Or maybe I’m used to it, so it has to be really intense for me to notice the feeling. Or maybe there’s no difference between the two ideas.
**Want to know one of my favorite things about BamBam? When he brings me his shoes, he plops down in my lap and snuggles into me so I can put them on. He’s so soft and sweet and squishy and warm that I wish I could draw out the moment to last an eternity.
BamBam likes therapy
Loved ALL of the diagnostic information and will use it when teaching. Not only are you being the best mom, but you are educating the masses. Teach on, mom!
Hi Michelle. I heard from the Highland Hall connection that you had written this post. I just don’t know what to say, but I hope we can talk some time soon. Please know that in time autism becomes just one more thing about your child(ren) — like his brown hair and his sweet smile. It does get easier. (((HUGS))), Jenny
Wow. To refer back to a few posts prior, you’re relationally learning the hell out of this. And at least as much to the benefit of your readers as to yourself. Interesting/valuable information about autism in general for those of us with limited knowledge about it, but better still, this is virtually a primer on how to get the most out of the diagnostic process, particularly your insight about getting your specialists to relate the information to your specific child and his challenges. I wish a wider audience could see it.
And if you have days – I think most of us do – when you can’t possibly relate to being the supremely capable uber-parent who can write something like this, consider Jack Lemmon quoting Billy Wilder as saying that instead of the cliched Hollywood wisdom of being as good as the last thing you’ve done, “you’re as good as the best thing you’ve ever done.”
Yep, you’re that good.