◊ Tuesday Weigh-in: 216.0 ◊
Yes, BamBam has been officially diagnosed with an autism spectrum disorder (ASD). They won’t be more specific than that until he’s a little older and better able to communicate, they want to re-evaluate him then in a few years, but he has the diagnosis all the same. We’re on the fence about BeBop. Therapy has brought him so far, but we’re having him evaluated as soon as I finish the %^&*ing paperwork. Here’s the official criteria, marked with where both BamBam and BeBop fit in:
DSM-IV criteria for a diagnosis of Autism
I. A total of six (or more) items from heading (A), (B), and (C), with at least two from (A), and one each from (B) and (C):
(A) Qualitative impairment in social interaction, as manifested by at least two of the following:
• Marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction. (BamBam & BeBop)
• Failure to develop peer relationships appropriate to developmental level.
• A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people). (BamBam)
• A lack of social or emotional reciprocity. (BamBam & maybe BeBop)
(B) Qualitative impairments in communication as manifested by at least one of the following:
• Delay in or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime). (BamBam & BeBop)
• In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.
• Stereotyped and repetitive use of language or idiosyncratic language. (BeBop, BamBam may have it later)
• Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level. (BamBam & BeBop)
(C) Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
• Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.
• Apparently inflexible adherence to specific, nonfunctional routines or rituals. (BamBam & BeBop)
• Stereotyped and repetitive motor mannerisms (e.g. Hand or finger flapping or twisting, or complex whole-body movements). (BamBam & BeBop)
• Persistent preoccupation with parts of objects.
II. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(A) Social interaction.
(B) Language is used in social communication.
(C) Symbolic or imaginative play.
III. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder. (They’re not)
Source: Diagnostic and Statistical Manual of Mental Disorders; Fourth Edition
I’ll talk about the results of BamBam’s evaluation, but a word (or two…or 800) about BeBop first. I marked the above based on where he was two years ago and he clearly fit in the criteria. I just found the patient information form I completed for his first speech evaluation and the last thing I wrote on it was, “I’m worried about some underlying problem we just haven’t found yet. He’s far too interactive and social for it to be autism, so what could it be?” Had I only known then what I know now. If you look at him now to see if he fits the criteria, though, not so much. But that’s after two years of A LOT of therapy: Speech, OT, PT, and social skills class. Not to mention preschool. Oh, and music classes, while not specifically therapy, therapeutic all the same. He still has some issues with body posture, but eye contact and social/emotional reciprocity have improved immensely. He’s graduated from speech therapy, which is huge, and his make-believe play is now off the charts. He does usually use a TV show, movie, or book as a template, but adds his own stuff in, so I’m not entirely sure how to count it. He still uses repetitive language, but no where near as much and it’s no longer his sole form of communication. Which brings us to the C-block. The big, glaring, “apparently inflexible adherence to specific, nonfunctional routines or rituals” thing. He still has the repetitive motor stuff, though he’s improved in that area, too. But inflexibility and routine are the big, hairy ones for me. His OT and I were talking just yesterday about his improvement in this area – she was able to do some alphabet things out of order without a meltdown – hallelujah! – and he was able to move onto other things (basically do things out of order) when someone else was using the scooter.
Two examples of inflexibility on routines:
1. Since we watched The Rescuers movie a million times last month, his bedtime routine now includes doing the albatross flight checklist when he comes downstairs for a hug and kiss. He “lands” by falling on his stomach and then army crawls over to me, all the while saying, “Doink, doink.” Yeah, I don’t know what that means either. Then he stands up and pretends to take his goggles off. He hugs and kisses me, then insists that I say, “Goggles down.” Not “goggles on,” mind you, or any other variation – he corrects me if I do it wrong (which I do on purpose sometimes to help him loosen up his rigidity) and we have to start again. So, he puts his goggles on and then says, “OK!” Then he tells me to say, “Wing flaps down” and I do. He wiggles his arms back and forth and says, “OK!” Then he tells me to say, “Tail feathers” and I do. He basically does the twist and says, “OK!” Then I’m supposed to end my part by saying, “If at first you don’t succeed, try, try again.” Then together we say, “Ok, take off!” and he hums the song (Off We Go Into the Wild, Blue Yonder), complete with the breathing (you’ll know what I mean if you’ve seen it or, better yet, listened to the record. Yes, I said record. It was the first movie I saw in a theater. I was six and my mom took me afterward to get the lunchbox and the record, which I’m pretty sure I wore out. Wish I still had that lunchbox…) and pretends to take off and goes upstairs, where his dad waits patiently to continue the routine.
2. The zoo in our house. Yes, we have a zoo in our house. He has various toy animals who populate the zoo. The polar bears live in the closet. The chimpanzees live under the table next to the polar bear cage. The kangaroos live on the stairs and the rhinoceros lives on the dining room table. The Komodo dragon lives in the guest bathroom – yes, in the commode. Be Bop is still upset about Princess moving the meerkats from the floor to the dresser of the guest room when she visited two months ago. There are many more, but the most annoying are the elephants, tiger, giraffe, hippo, and lions who live along the walls in the front hallway. Everyday he comes home preemptively upset because someone has “broken” (read moved a part of by an inch or more) his zoo.
I know, I know, those examples are pretty cute. Still, his rigidity in adhering to them will cause problems in his life. Okay, I didn’t mean to write a freakin’ treatise on BeBop, but there it is. Enjoy. Now on to BamBam.
I marked criteria that BamBam falls into above. The evaluation came back stating that his testing “indicates significant difficulties in communication, daily living skills, interpersonal relationship skills, and play and leisure skills.” It also says that he’s delightful and charming, so there’s that. And that he seems to be very responsive to intervention (meaning therapy).
Actually, I think the most accurate description in the summary of the report is this:
[B] had more difficulty when things were less predictable and structured. During these times, his social behaviors decreased. He had trouble reading and giving verbal and nonverbal cues. [B] especially struggles with language and communication. He has trouble communicating needs and frustrations. He demonstrated difficulty using nonverbal communication to mediate social interactions (i.e. eye contact, visual referencing, etc.). [B] demonstrated difficulties initiating play on his own.
Just after that, they say that he qualifies for a diagnosis of Autism Spectrum Disorder. The National Research Counsel recommends that children in the autism spectrum receive a minimum of 25 to 40 hours per week of intervention. Uhm, yeah. Not gonna happen. We’ve increased his therapy to seven hours per week. There may be an opening in a co-op class in the next few weeks that would bring it to nine. Even if I could manage more right now between the two boys, I don’t think it would be good for BamBam. He needs time to wind down and just play and recoup. His OT warned me about that recommendation before he was evaluated, which helped me not to scream at them when they said it in the meeting. She told me to keep it in mind that it’s also important not to over-schedule him.
So now I have a recognizable term to describe why my son is in therapy, but I still find it difficult to express what he’s doing in therapy. When I told her I was having trouble telling people about BamBam’s progress, his fabulous speech therapist listed some of it for me:
→He’s interacting with people
→Watching and observing others
→Not “in his own world” as much
→Responds to us better
→Beginning to imitate more
→Signs “more” which is how he asks for things now
→Follows directions (simple) more consistently
→Responds better to words and his name
→Now asks for more
→Says more words
That’s how he’s doing; pretty well.
I’ll leave you with this: a landmark book for kids with sensory issues (both of my kids have them) is called The Out-of-Sync Child. Here’s a picture of BamBam in sink.
First of all, that is one heck of a cute kid!
Secondly, I am sooo in agreement about not stressing him with overscheduling. You reinforce a lot of his therapy precepts at home. He is a little guy and doesn’t need to be in some militarized routine (especially when the rigid routinization is an issue to start with!).
I have a child in my class whom I believe to be undiagnosed as on the spectrum. She is very bright but shows difficulty in conversation and has zero imagination (making a repetitive speech about your favorite tv show is NOT conversation but hostage taking!). With careful work and lots of praise, we’ve developed better eye contact and some response to nonverbal cues such as “sit back down” and “no” without having to articulate them and disrupt the group.
It would be so much easier on her if her parents were willing to have her evaluated…I worry about her.
Wow he’s cute! We pretty much live Out of Sync Child around here. I just had it out yesterday to brush up on more procieptive activities as it seems Sweet Girl’s sensory issues are migrating from vestibular to procieptive. Just to keep me on my toes. 😉
I think many parents are afraid of labels, but without Sweet Girl’s ASD diagnosis/label I wouldn’t have been able to get the help for her that she desperately needed/still needs. She was a little younger than two when I finally got smart enough to get the ball rolling. We started with play therapy, speech and OT. Now she’s a couple months away from four and she goes to pre-school full time and we just started an in-home ABA therapy program. We’ve been doing gfcf diet and some biomedical things since before her diagnosis. She could NOT have handled 25-40 hours a week when we started. She can now, with ample wiggle room for bad days and down time. We are worlds (and words!) away from where we started but we are worlds (and words!) away from our goal, yet.
The one thing I wish people would talk more about in regards to autism, is that it doesn’t change the love we feel for our kids. They are still our beautiful children and labels don’t change that. Ever. Best of luck with your beautiful boys!
You’re right… it’s hard not to just focus on the cuteness of one’s home turning into a zoo. Plus I loved The Rescuers too. (You can tell I don’t have kids) 😉
Good luck–but with all this thought and time and love going into your planning for your kiddos, you won’t need luck. 🙂