This post is where I really stopped writing in this blog. I just wrote the title- Evaluation for Autism, and stopped. It's much easier to write about it now, three years later.
I can see, reading some of the other posts I wrote around this time when Timmy was three years old, that I was really having a hard time with him. I remember him pushing other children, and he seemed to think it was a fun way to play with them, babies included. When I got him to stop doing that, he started kicking, then on to hitting, and finally hugging, but often around the neck in sort of a stranglehold. He would run in and grab other kids' toys or squeeze himself into their chairs. One time he pushed a child off a play set. Very fortunately, it was only three feet high. It was a horrifying time for me. I was scared to leave the house with him. I would often get a call from his preschool to come and pick him up because they couldn't handle him. He'd painted a chair, scratched and bitten someone over sharing a tricycle or kicked and hit the principal in front of prospective parents. He didn't seem to notice at all when he was bothering the other children. He acted like we had no discipline, that he was a bad kid, and we must be awful parents. Other parents worried about their child being a victim, but I would have felt so much relief if that had been the case for us. Instead we were always on the other side. It was new, and I was at first not expecting it, and every new kind of incident was a surprise. What has he done now? I learned though. I stopped trying to sit on a park bench or talk to other moms at the playground. Instead I needed to be following him around, within a few feet of him, constant vigilance.(It became so ingrained, I was always surprised how easy it was to take Lexa places as a toddler and preschooler. She was just fine playing with other children. HUGE contrast.) Deep down, I questioned if I was doing something wrong. Why was he the only three year old behaving like this? He was also our first child, so I didn't truly know what was normal.
One day, after he'd been in preschool for about a month, his teacher told us that she'd seen a lot of three year olds and that she didn't think Timmy's behavior was typical, that she thought there was something more to it. She pointed out his difficulty understanding personal space, impulsivity, and how he liked to chew on objects frequently. She also said his behaviors seemed to get worse when the kids were crowded together, like when putting on backpacks. She recommended having him evaluated by early childhood development services and learning about sensory processing disorder. This was like a devastating, crushing blow (There's something wrong with my child!?) and, at the same time, a ray of light (We could get help? We really need help!)
I went home and googled his behaviors. His impulsiveness, personal space issues, hyperfocusing, tendency to wander all over the place, and not stay with me at places like library story time, and apparently some social problems as well were consistent with what I read about ADHD. We went in to special services for a screening. Timmy did exceptionally well on the language and cognitive tests, so they didn't think there was anything wrong, but because of the behaviors I told them about, they sent a doctoral student to observe him at his preschool.
What she observed was very typical of him, but it was also eye-opening to read, as well as an interesting glimpse into a day of his life at preschool. Here's some of her observations that day from her report:
"Timothy sat on the rug and was playing with the blocks. He was by himself and was narrating along as he built. Timothy then transitioned to the art table. It was noticed that Timothy had limited eye contact when he spoke to adults and peers. Tone modulations were rarely detected in his speech, and he did not demonstrate much variation in facial expressions. At the art table, Timothy seemed to have trouble getting the attention of his peers. While creating shapes with rubber bands, he mumbled to friends at the table, "I made and I." Seeing that no one was looking over, he repeated it again, and yet still no one paid attention. Since he did not direct his words at anyone, nor did he look at any particular child, most children did not acknowledge him. Later Timothy went over to the playdough table. While at the playdough table, the teacher announced that it was time to go to chapel. Timothy began to frantically roll the playdough and simultaneously grabbed all of the playdough tools he could and rolled the playdough with them. He screamed and stomped his feet until the teacher intervened and physically moved him to the line. Timothy appeared to dislike going to chapel. During chapel time, while everyone was singing and listening, Timothy was shouting out phrases, crawling under the pew, and did not sing along. However, he became quiet and engaged whenever his teacher began to tell a story. After chapel time, the children went outside to play on the playground. During outdoor playtime, Timothy was observed to engage in either parallel play or solitary play. Moreover, he seemed to have difficulty understanding and respecting his friends' personal space. He followed one of his classmates throughout the entire playtime. Although limited conversation was exchanged, they took turns pulling each other on the wagon and swinging side by side. Upon seeing two of his classmates sitting in one chair, Timothy walked over and tried to squeeze himself in it as well. One of the classmates left immediately while the other frowned and tried to push him off the chair. Timothy remained in the seat until a teacher came and intervened. At the end of outdoor playtime, children were asked to line up outside the classroom to wash their hands. While everyone was lining up, Timothy tried to walk away from the line. The adults came and told him to stay in line. He said no and tried to cover his classmate's face with his hands. When the teacher came around with a bucket of water, Timothy hurriedly immersed his hands into the bucket and stomped his feet. Inside, children sat down around two tables for snack time. Timothy had a difficult time keeping his hands by his sides. Classmates at the table asked him to stop bothering them, but he continued to touch them. His teacher came over and put pieces of tape on the table top to make a box that indicated where his hands should go. Timothy was better able to keep his hands within the boundary. Timothy ate quietly after that. After snack time, children went on to center time. Timothy chose to play dress up. He asked the teachers to help him put on various different apparels. He then walked over to the block area and began to build with blocks. He sat next to a few classmates, but did not carry on any conversation with them. One of his classmates became curious about what he was building. He explained that it shoots out money. Interested, the classmate took what he built. Timothy then said, "I want that." and walked on without looking at his friend or waiting for him to acknowledge his request. However, his friend grabbed him by the shoulder and returned it to him. Timothy then went and stood in front of the sensory table. He picked up a toy spider and put it in his mouth. His teacher came and intervened. Timothy spent the remaining center time working with blocks. When the teacher signaled it was time to clean up, Timothy put the blocks away and went up to the treehouse loft in the classroom. The teacher tried to bring him down, but Timothy screamed, stomped his feet repetitively, and kept pressing a basket that he had in his hands into the wall. While throwing a tantrum, he also kept blowing his lips to make the "puuu" sound. The teacher physically intervened and finally escorted him down from the loft. After he came down, Timothy tried to squeeze himself into a shelf. Again the teacher redirected him to the playdough table. He stayed at the playdough table while the teacher read a story to the rest of the class. He played with playdough quietly while looking up at the teacher until the story was finished. Timothy went to work in the art center putting stickers on a construction paper. He neatly and attentively placed stickers on the paper and stayed on task for over ten minutes. The teacher informed the class that it was time to clean up, but Timothy continued to work. Eventually, the teacher came over and asked him to put his artwork away. Timothy screamed and reached for more stickers. The teacher began to count to three, Timothy complied and put away his artwork. While everyone was walking to music class, Timothy repeated the word "diaper" and kept turning his body to face his classmates behind him. The teacher came and held his hand. They walked together to the music classroom. During the music lesson, Timothy was squirmy, shouting out phrases, and did not sing along. The adult held him gently so that he would not crawl away. After the class sang together, the teacher passed out drums for the children to play with. As soon as he received his, Timothy began to bang on the drum continuously despite the teacher's instruction. After music lesson, the teacher led the classroom to the playground. Timothy rode on a tricycle with a friend. They took turns riding it. Timothy then moved to the sand pit. At the sand pit, he squatted down next to a classmate and began to scoop sand. Seeing that Timothy was dumping sand on her pile, she tried to push him away. Timothy stopped but continued to scoop sand nearby. The dyad then began to poke each other with their shovels until teachers came to intervene. Transition to inside time was disruptive. Timothy refused to line up with the class and kept going over to the outdoor stage. After the class went in for snack time, Timothy was very active at first but eventually calmed down when he began to eat. During center time, Timothy chose to play kitchen. He took out all of the kitchen pieces and was able to name all of them. At the lego station, Timothy became frustrated when another classmate was putting the lego pieces where he wanted. Timothy grabbed the pieces from his friend, stomped his feet and screamed at his friend. His difficulty in resolving conflict with his peers was again observed when he switched to the science center. When his classmate continued to take the lincoln log he was using, Timothy screamed, grabbed the toy, and eventually hit her with the toy. During clean up, Timothy continued to work in the art center. Rather than asking him to clean up, the teacher began to read a story. Timothy stopped what he was doing and joined the classmates at the carpet.
The teacher interview revealed Timothy's difficulty handling transition times, interacting with peers and regulating his frustration, frequently putting inedible objects in his mouth and having a high tolerance for pain. Teachers reported that cognitively, Timothy appeared more advanced than most children his age.
In conclusion, Timothy's difficulty in forming appropriate social relationships may be attributed to his overall low social skills and limited understanding of social cues. He appeared to have little knowledge regarding personal space and the appropriate way of engaging peers. He often fails to establish eye contact, seldom addressed a person directly and is unable to use words when he becomes frustrated, although he is able to communicate his needs when calm. Also, Timothy has difficulty adjusting to changes which often leads him to have a tantrum when the teacher signals a transition. This difficulty was more apparent when he was asked to terminate his favorite activities(e.g. arts ans crafts) and go on to less preferred activity. Transition to music and chapel time were most difficult. Timothy was obseved, however, to have a high predilection for working with arts and crafts and participating in story time. He enjoyed story time and would sit still when the teacher began to read a story. He is also able to concentrate over a prolonged period of time when working in the art center, which allows him to draw pictures, work with playdough, and paint.Timothy was observed engaging in frequent repetitive vocalizations of single words as well as blowing, particularly when he was frustrated.
Given the results of these obsevations, it is recommended that at comprehensive evaluation for Autism Spectrum Disorder be considered, particularly given the constellation of behaviors that Timothy presented during the observation."
Autism? When I first heard autism, I had a stereotypical idea of severe, classic autism, nonverbal with hand flapping. I had checked him off as not having that because he smiled at us, talked, with advanced vocabulary even, and made eye contact. Since he was our first child, I didn't realize, that, yes, he made eye contact at times, but it was less than typical babies, just like now, eye contact every now and then, but less than others. I didn't realize this until it was pointed out. If I've learned anything about Autism now, it's that, although there are some behaviors that some children on the spectrum share, it's a spectrum and can look as many different ways as there are children on the spectrum.
We had him evaluated with special services and a developmental pediatrician and psychologist. He qualified for special services as a student with an autism spectrum disorder and was diagnosed with a high functioning autism spectrum disorder with no language delay, PDD-NOS, (Pervasive Developemental Disorder-Not Otherwise Specified). He probably would have qualified for a diagnosis of Asperger's Syndrome if he had been a couple of years older at the time, but , also, that diagnosis was not going be included in the 2013 DSM diagnositic manual anymore anyway. He had behaviors under all of the criteria categories - sensory issues, especially chewing things, repetive behaviors a little bit, major tantrams frequently and especially if things aren't as usual/expected, difficulty with transitions, extremely picky food issues, sleep difficulties, playing with toys in unusual ways, not the way the toys are intended(I think this is a good thing. He's incredibly creative.), emotional immaturity, but most of all social skills such as not understanding other people's perspective, less eye contact or looking at and facing who he's talking to, speech volume, speed, appropriateness, not talking about something other than his interests. The pediatrician told me to watch out for ADHD if he's having alot of focusing difficutly, because it is common for children with autism to also have ADHD. It affects the same parts of the brain as autism.
He started right away in the special education preschool classroom at the public school. They had a special program for autism and communication disorders. He had inclusion time with a kindergarten class for about half the school day, and he improved quickly and dramatically. He had a great kindergarten year there too, and spent all but 30 minutes/day in a regular kindergarten classroom. Things have gotten more difficult recently in first grade now that we have moved away from that program and have him in a charter school with reduced special education staff. He's been poking, grabbing, lashing out physically in anger, difficulty focusing and listening, inappropriate rolling on the floor. I'm hopeful his behavior will continue to improve and that they will find solutions that will work.
Some other moms asked me once what were the first signs I saw of autism. I obviously was oblivious, but, in hindsight, the first thing was that he wouldn't play imitative games as a baby. The baby books say, if you stick your tongue out at baby, baby will stick their tongue out too. Not Timmy. I thought, and maybe still do, that some babies just aren't into this game. As early as 2 months old we noticed that he had really long focus. He'd look at and touch a dangling toy for 30 minutes at a time, at 2 months. (This was a sign of him being really smart. And he is!) At six or seven months old, the other babies at our playgroup stayed near their mothers, especially at first. Timmy crawled right up to the other babies right away, would laugh at them, grab at pacifiers. At eighteen months old he was lining up toy cars, side by side in long lines, then moving one toy at a time to a new line. He'd play like that for 30 minutes or longer. That's also when the first incidents of him pushing other babies and kids started. He'd also started to wander away at that point. He didn't really have a limit to how far away from me he felt safe wandering. He never stopped mouthing objects after babyhood either.
My greatest hope is that he can learn the social and emotional skills that don't come naturally to him like they do for most other kids so that he can have a happy and wonderful life.
As difficult as Timmy's behavior can be, he is also the smartest, most awesome kid I know. He is completely amazing and he reminds me of it everyday. If his difficult behaviors are the price of his incredible creativity, then they are worth it. He is the smartest, most awesome, fun, amazing kid that I know. He also has a really big heart. When we were contemplating whether we wanted to try to have one more child, the chance of that child also having autism was brought up. We came to the conclusion that having a child with more severe autism is scary, but as hard as it has been to deal with Timmy's behavior, having another child like him would be anything but a bad thing. It would actually be absolutely amazing.
Guilty pleasures- I enjoy reading a good book or even just facebook while nursing, wearing pajamas all morning, eating the leftovers off Timmy's plate, and especially taking a nap with my baby! As a mother, I've relaxed into my life.
Adorable in her big floppy hat
Lexa has been going through a separation anxiety phase for her whole life. For awhile I couldn't even leave the room. Timmy went through this off and on, but never as bad as this. It's nice to be loved and needed so much, but it can be hard. Sometimes I need a little break or at least a shower.
