Thursday, March 08, 2007

Atypical autistic development?

I was reading a couple of posts today that got me thinking...

Friend mcewen, in this post talks (in typical self-depricatory fashion) about the system that's worked best to jumpstart her 2 boys socially & verbally. Not only does it seem heroic to me (with just one autistic kid) that she was working with both at the same time (go girl!) but it made me reflect on our journey with Brendan & how he seems to be doing this autism thing, well, backward. This post by Kristina also led me to think back on what we were told Brendan would or wouldn't accomplish, vs what he has accomplished, & that reflection also made me realise that Brendan's path is not what might be called "typical", even by atypical standards...

There is no question in our minds, knowing what we do now, that Brendan has been autistic from birth. He was a high-needs baby who literally could not be put down (unless already sleeping) until he was 5 months old. He needed to be rocked to sleep every night & did not sleep through the night until he was 2 1/2. Charlie & I adapted to him. We never tried to "Ferberise" him, finding that the night-parenting methods of Dr. Sears fit better with our philosophy, although it was a challenge. Brendan was never a "terrible two" in that he rarely tantrummed, but his needs for constant diversion & his uneven development (although he hit all the developmental milestones on time) made him a very intense child. He had a small but eloquent vocabulary of baby signs that we taught him at around 10 months, which he lost completely at 14 months when he began learning to walk. After he'd mastered walking, at about 17 months, he began speaking & quickly moved from single words to sentences. He was very imaginative but rarely played with toys, so depended on us as his playmates. When he was around 3 1/2 he began having difficulty with transitions, particularly with leaving places he wanted to be (like toy stores & playgrounds). He would scream for long periods of time & sometimes run in circles until he fell exhausted on the floor when he was upset. We started to use the time-out system (from the "1-2-3 Magic" book) to help him learn to self-regulate, but sometimes had to adapt things to his quirks. I remember having to time him out on the landing of our stairs because if we put him in his room he'd trash it (at 4 years of age) & if we put him in a chair he wouldn't stay there. Because Brendan was so verbal we knew he understood what was going on & he could give us a fair amount of information about how he was feeling, too. Up until he was about 5 we thought that we just had a "spirited child" on our hands & were not aware of any of his developmental delays or visual/perceptual difficulties (although in retrospect it all makes sense). He didn't like colouring or drawing very much, choosing to use just one colour & scribbling when asked to draw. Although he wasn't getting any formal therapy before the age of 5 (since we didn't realise he needed any) we were with him constantly when he was not in school. He rarely watched tv alone because one of us would watch with him, whether PBS or a video, & we would discuss what we watched afterward. Although our time with Brendan wasn't structured, like a therapy would be, we structured his life securely around him because that was how he functioned best.

When we began to discover that he had severe developmental delays, the summer Brendan was 5, no-one ever told us that there were things he "would never" accomplish. The only "never" was that we were told that no child from our school district had ever received on-site therapy services at the private school he attended for kindergarten. The initial plan was to bus him, 3 times a week, in the middle of the school day, to another school where he'd receive OT & PT. Being very inexperienced with "the system" we weren't happy about this, but didn't know what to do. When we asked a friend who is an education lawyer if this was acceptable legally, he told us that the laws in NYS are pretty ambiguous about how & where therapy must be given. It took a compassionate person in our school district's special ed. services department to realise that busing him to another school "wasn't in his best interest" & she decided to make it possible for him to get on-site services. The school was delighted, since it meant that they had a precedent & could argue for other kids from our district getting on-site services as well. It wasn't until that fall of his kindergarten year, after OT & PT had begun, & Brendan began to perseveratively whack himself in the stomach, that we could really see that Brendan was behaving differently from most kids. Up until that time whatever he did seemed to us to be within the realm of "normal". We also noticed, after taking him to his second movie in a theatre at age 5, that he couldn't cope with the intensity & noise, so we just stopped taking him to theatres. No big. :)

Even when Brendan was diagnosed with Aspergers, the following summer when he was 6, the idea of his possibly never accomplishing something was never brought up. I guess we were lucky :) The focus was on getting him the proper therapies & school interventions so that he'd do the best he could. The pediatric neurologist did tell us that he would probably develop Tourettes (& he did, 3 years later) & was concerned enough about depression to want to put him on anti-depressants at the time, but we were not keen to do that, since he seemed to be functioning just fine to us. It wasn't until Brendan developed Obsessive-Compulsive Disorder 2 years later that we needed to resort to anti-depressants to help him cope.

A snapshot of Brendan at age 7 1/2, just before the OCD became a major player, would show an imaginative, highly verbal child, with poor social skills, poor fine-motor skills, proprioceptive & motor-planning issues, & emerging visual/perceptual skills (thanks to intensive therapy). Although he had difficulty functioning at school (he wanted to be under a table most of the time) his first grade teacher, Paula, had the skills to bring out the best in him & really help him learn to function there. (Paula's skills came from not only being an experienced teacher, but from raising a son with autism as well.) Brendan started out in second grade doing the best he'd ever done with schoolwork (he could now see & track visually well enough to read & write). He seemed to enjoy many things in life- legos (which he could now build with independantly, thanks to the new visual skills), building with blocks, learning to ride a bike, & he was doing more socially with friends, like going to his first sleepover. He developed a great interest in Harry Potter & was very keen to discuss his theories about the mysteries in the books. Although very imaginative, he still mostly made legos for the sake of putting them together, although he sometimes set up tableaus illustrating scenes from HP or Bionicles stories.

Just around his 8th birthday Brendan began having trouble making decisions, getting terribly upset he'd make the "wrong" decision & sometimes becoming paralysed by decisions. He started getting extrememly agitated & frightened when he saw spiders & developed fears about touching certain things. We were (fortunately) working with our present child psychologist, who we'd started to see to help us deal with the perseverative behaviours when he was 5, & were able to get in to see him a little sooner than usual. He identified these new behaviours as OCD & recommended that we see a child psychiatrist. We also happened to see Brendan's pediatrician around that time, & it turned out that her research specialty was OCD. She loaded us up with information & materials, which we really appreciated. One thing that she told us was that 8 years old is often the time when OCD shows up in children, which we found very interesting. The summer after the OCD began was very, very difficult. Brendan's functioning became more & more limited. He developed fears & phobias at an incredible rate. He had psychotic episodes where he was so revved-up by the fear that he'd thrash around, hit himself, whack his head on things, scream, cry uncontrollably. It was heartbreaking. The evenings were the worst time of day for him & we nearly called an ambulance 3 times that summer because he was hurting himself & we weren't sure we could calm him down (although we finally did). He had enormous trouble falling alseep. His psychiatrist had him try anti-depressants at first (prozac), but he didn't tolerate a high enough dose (they would rev him up even more) to really help, although we could never completely withdraw him from them either, since that would cause frezied behaviour, too. Brendan developed a fear of not only spiders, but of anything that had touched a spider. When Charlie picked up a spider in a kleenex to dispose of it, Brendan noticed which hand he used & wouldn't allow him to touch him with that hand. He developed an aversion to his thumbs, particularly to the nails, & wouldn't hold anything using his thumbs. We found that if I taped his thumbs with surgical tape he did better, so we spent the summer doing that. He dropped things all the time because of his awkward, thumbless grasp. He couldn't write like that, either. He became extremely sensitive to touch & to certain smells & by the end of the summer I was the only person who could hug him. Charlie could touch Brendan's foot with his right foot. That was it. Grammie had to back-off with the hugs & kisses & she did an admirable job of holding back. I couldn't wear any perfume or use soap that wasn't herbally-based. If we had a sitter stay with Brendan they couldn't touch his bed or he wouldn't get into it (we found this out the hard way) & I would have to change the sheets before he'd get into bed. We did discover that one of my herbally-based sprays would "sanitise" things so he could tolerate them, particularly if there was an unacceptable odour there or if it had been touched by someone else. Finally, Brendan's psychiatrist recommended that we try seroquel when it became obvious that prozac wasn't going to give him enough relief. Brendan responded immediately. He was calmer & the fears began to abate, although he was still hemmed-in. When he started 3rd grade we brought in a can of the spray for them to use, so that he could overcome the many OCD triggers there. He began working much more with the consultant (special ed.) teacher because he couldn't stay on the classroom & finally the school asked our disrict to modify Brendan's IEP to include time with the consultant teacher (which they did). Another child's aide wore very perfumy lotion & because of this he developed his first aversion specifically related to a person. On the plus side, his teachers were able to help him sit down & explain to the aide why he ran away whenever he saw her, which was a great lesson in self-advocacy, & she sweetly responded by changing the lotion she wore at school. On the down side, Brendan broadened the aversion to any middle-aged african-amercian woman he saw, which has caused some misunderstandings ever since- how do you explain that your kid is not racist? However, when people could see just how specific the aversion was (Brendan's godfather was african-american as is his music teacher & he has no trouble with them at all, nor was he bothered by our young, female, african-carribbean music director at church) it became understandable, although this is the first time I've written about this, & sometimes it still feels like a "dirty little secret"...sigh.

It has been 3 years since this phase of our lives began. When the OCD became the major issue neither Charlie nor myself saw it as part of Brendan's autism, & in fact, the Aspergers became almost irrelevant in light of the changes the OCD had made in our lives. Until about a year ago I thought that the OCD was something to "fight" & "defeat" & I feel a bit ashamed of this. If I have any understanding of parents who say they hate their child's autism, it's due to our struggle with Brendan's OCD. It's very hard to have any positive feelings at all about something that causes your child (& you) so much pain. About a 1 1/2 years ago, though, Brendan also developed Tourettes, with most (but not all) of his tics being directly connected to OCD thoughts. We remembered that Brendan's neurologist had told us that this might happen, & we realised that we were not dealing with separate "diseases" within one brain, but a related set of neurological differences, which we have now come to see as falling under the umbrella of Brendan's particular brand of autism. The professionals we deal with (almost literally) day-to-day, Brendan's psychiatrist & psychologist, have never disputed this perception/perspective. Perhaps they see that this is what works for us... or perhaps they agree with us. Nobody's disagreed yet :)

To get back to where I started this trip down memory lane, Brendan's unique journey with autism seems to have taken him from being pretty functional (highly verbal, imaginative, articulate, not too many aversions to food/noise/odours) to relatively less functional as he's gotten older. He is certainly just as imaginative, verbal, & articulate as he ever was, & has added insightful to the list as well. But he is much more highly reactive to noises, tastes, smells, sensations than he's ever been in his life. He's highly reactive to his environment as well, thanks to the OCD, & far more disruptive than he was in kindergarten, thanks to the Tourettes. His learning difficulties are almost solely related to the OCD, although his resistance to using a keyboard has led us to what would have been a more functional alternative anyway, voice-recognition software, so there's a tick on the side of OCD :) Do I see all of this as the much-touted "autistic regression"? No, I don't. When Brendan's pediatrician told us that age 8 is the classic onset time for OCD, it made me wonder if that wasn't due to this being the prime age for things to get much more complicated developmentally. In Brendan's school, the classes are grouped developmentally, with K-1, 3-4, 5-6, & 7-8 graders taught together. But within the past 10 years it was determined that 2nd graders have very specific developmental needs that are best met if they are grouped only with 2nd graders. I really can see how many more demands are put on the kids as they get older. It didn't really surprise me that the transition to 5th grade this year has been very difficult for Brendan, & it's taking pretty much to the end of the year for him to settle into being in 5th grade... good thing he's with the same basic group next year, too! At home, I can see Brendan accomplishing some very developmentally-appropriate milestones- making his own breakfast, learning to use a knife, learning to use timers to help him self-regulate. But he also needs much more structure than the average nearly-11-year-old. He did begin to imaginatively play on his own with his legos (not just build them) around age 9, but these days the OCD interferes so much that playing on his own doesn't provide enough structure to overcome the thoughts & enjoy himself. His favourite play-time activity these days, other than the highly-structured online games he loves, is to play legos with dad. We've come to understand that Brendan doesn't trust other kids to play this way with him, & he seems to really crave the lego time with Charlie, who is fun & trustworthy, too. I love hearing the two of them playing upstairs, & I really admire my husband's patience & flexibility to give this time to Brendan, when most other dads with boys this age are moving onto more sophisticated pasttimes. Not to say they're not getting more sophisticated, as shown by their first-place finish in Brendan's first-ever stint crewing for dad in a sailboat race...

When it comes to wondering what or if Brendan will ever do certain things- go to college, get married, live independantly- basically we don't think that far ahead very often. It's not because we assume he will, though... right now these things feel as though they depend on so many variables that it would be just as valid to flip a coin to find out. This afternoon I'll be meeting with Brendan's music teacher to help him understand why Brendan's functioning is so variable in music class this year. Brendan has had this same teacher for music for the past 2 1/2 years, so the necessity for this meeting just underlines for me how much trouble Brendan is having adapting to the complexity of life as he gets older. Some of his biggest enemies right now are the assumptions that are made about how he should function... This is not to say that we feel hopeless about Brendan's future, nor are we any less than proud of the amazing young man that we are raising. I believe that, somehow, he will find the right niche for him that will give him a happy & productive life. In fact, that's what we've always been about, even before we discovered that he's autistic. "Nuff said!! :)

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