Improving Sleep, Language, Socialization, and Behaviors in Autism
Nancy was a 5 year old girl diagnosed with autism and sensory processing difficulties. According to her parents, Nancy's:
"biggest deficit is language and communication, especially expressive. Nancy has a difficult tending to tasks, especially non-preferred tasks, when there is any type of distraction. She is also unable to sleep alone and stay asleep all night. Nancy likes to play with kids but has difficulty communicating and making eye contact. She also requires extra processing time when responding to a question. Nancy is very bright and likes to sing, play pretend with her stuffed animals, ride her scooter, and go to the park".
Before starting the REI Custom Program Nancy's father needed to sleep on a mattress on the floor in her room. She had difficulty falling asleep and also woke up at night, often between 3 and 4am, and stayed awake for several hours. As well, she rarely slept past 6am if she fell back asleep at all.
Socially, Nancy had difficulty knowing how to engage with others, especially other children. She was often unresponsive when spoken to, preferred to play alone, and when she did interact she often displayed verbal outbursts and inappropriate laughter. She also rarely looked at people or made eye contact unless prompted. She would also get anxious and upset if someone she didn't know approached, or often even looked at, her.
Her language development was below her age level. At the REI Custom Program start Nancy was only able to communicate using single words or short phrases. Complete sentences and meaningful language was nearly non-existent. Her receptive language was better as she understood what was said to her but she needed significant processing time when given multi-step instructions. She also tended to lose focus often when asked to listen to instructions.
From a sensory processing perspective, Nancy was a sensory seeker, and as such, she craved activity and tended to be impulsive. She would excitedly run through the house or ride her scooter down the sidewalk. Another manifestation of her sensory issues was that she had little body awareness - she wasn't potty-trained - and she often bumped (or crashed) into people, particularly other children.
The first week on the REI Custom Program Nancy had some difficulties, which where decided to be the result of playing the recording too loud. We determined this because Nancy's sleep was immediately disrupted, a change typical of over-stimulation from an REI recording.
The following parent report demonstrates how over-stimulation, due to too high of a volume, manifests on a listener's sleep and progresses over time:
The first night:
She listened to the audio track at 7:30pm while building a marble run tower with her brother. She fell asleep at 9pm in her brother's lower bunk. Initially, I did not sleep on the floor like I did prior to her listening to the audio track because she was sleeping in her brother's room. She woke up during the night at 3am. I went into the room to comfort her and to help her fall back to sleep. She fell asleep immediately.
The second night:
She listened to the audio track at 8pm while laying down in her brother's room. She stopped the audio track 2x for 20-30 seconds, but I resumed playing the track from where it stopped. After she finished listening to the audio track, she listened to relaxing music on Pandora on her iPod. She began having vocal outbursts at 10pm, so I gave her melatonin and put her in her room to go to sleep. She fell asleep at 11pm and woke up at 2:30am. I went into her room to comfort her and she fell back to sleep at 5am and woke up at 7:30am.
The third night:
I played the audio track at 8pm and read her books until the track finished. I slept on the floor in her room the third night and she slept from 9pm to 6:30am, which is normal for her.
The fourth night:
She listened to the audio track in the car on our way home from the aquarium at 9pm and fell asleep at 10pm. However, she woke up 3x wanting to sleep on the floor with me instead of her bed. After the 3x, I let her sleep on the floor with me and she woke up at 6am today.
Today, she is really wound up. There have been several vocal outburst and periods of out of control behavior. Over the course of the last few days, the vocal outbursts have continued at home, although she has been more affectionate than usual with my wife. Nancy has been able to engage for longer, continuous periods of time with my wife, 1-2 hours of diong various preferred and non-preferred activities. She is also using names more frequently to gain your attention.
On the flip side, the level of stimulation present in Nancy's first REI track played at the volume ti was played at, presented enough stimulation to begin having an impact on language an socialization. These issues are ones that we usually begin addressing later in the program, when the listener can better handle the higher level of stimulation that his track at this volume presented. Again, from her parent feedback report after one week of listening:
On the positive side, Nancy is doing more self-talk, especially conversational self-talk. She is also being more social with people outside of our family and exhibiting less anxiety outside of the home.
Last night we took Nancy to an invite-only event at the local aquarium for kids with autism and their families. Nancy had one brief verbal outburst in line while we were waiting 15+ minutes to enter the aquarium, but no additional outbursts for the next 2 hours. There were a LOT of people and there was a lot of waiting in confined areas. She was patient and engaged the entire time with no further outbursts, only communicating with words what she was seeing and what she wanted to see next. We were nervous when we saw the crowd of people bc she was very excited to go to the aquarium and we were worried she was going to have a meltdown since it was in the evening and she was tired, but she did a great job!
Based on the feedback for the first week, Nancy's parents and I decided that she should listen to the same track at a lower level. This represented a trade-off between Nancy's unimproved sleep and her improved language and social participation. They were asked to let the REI Program Client staff know if her sleep worsened or if her anxiety remained high or if her behavior didn't improve.
After another week on her first recording, her parents reported that her meaningful, pragmatic language was continuing to improve, as did some of her impulsive behavior. As they described:
We continue to hear an improvement in Nancy's language. She is using meaningful language more regularly in sentence format. We are also hearing more verbs, adjectives, and adverbs, as well as more pragmatic language. We are playing the music softer and her sensory has improved. She still has bouts of excitement when she tears through the house, but it is in shorter increments (10-15 min) vs 30 min+.
Regarding Nancy's sleep, she was still struggling. She also was more tired during the day. Her parents noted:
There is little to no improvement in Nancy's sleep. She continues to wake between 3-4am each night and has been up regularly at 5:30am for the last 4 days. My husband is still sleeping on a mattress on the floor in Nancy's room, but she is now coming into bed with me. Sometimes she is able to fall back to sleep within 10-15 minutes on her own. However, a couple nights she has been up 1+ hours. Last night she was up from 3:50-5am. We listened to the sleep track and I gave her melatonin. She slept until 7am. One great thing is we are continuing the same bedtime routine, playing the track while she hears a story, and she is falling asleep faster than in the past. Yesterday she took a nap in the afternoon -- very unusual for her. I tried to wake her bc a nap normally means a late bedtime, but she literally would get up, walk around, and as soon as I turned my back she would be asleep on the floor! THis happened 2-3x. Very strange...the good thing is, she was asleep by 9pm last night. Nap days she is usually up to 11-11:30 pm.
At this point, even though her language was improving and she was listening at an appropriate level for her, it appeared that this recording was still too stimulating for Nancy. This was evidenced by a decrease in eye contact and no change in focus, anxiety, and impulsive behavior. Again, according to her parents:
Nancy's eye contact is getting worse. She needs to be constantly prompted to look at our eyes when she speaks. There is no improvement with her turning when her name is called and she continues to exhibit poor focus. Also, she continues to have occasional verbal outbursts and it has now begun at school. She also has times when she bursts into laughter for no apparent reason and cannot control herself. She falls on the floor laughing hysterically at very inappropriate times. Nancy has also been very short-tempered and is getting upset easily. Her anxiety level is still high, especially if anyone she doesn't know looks at her. She is still very disorganized, too.
We reduced the level of stimulation for her next several REI recordings hoping that her anxiety, impulsivity, and behavioral outbursts would diminish and her sleep would improve. After six weeks on the REI Custom Program (4 tracks) Nancy's parents reported that:
I just spoke with Nancy's teacher. She called to tell me that Nancy has seemed different at school the last week and a half - that Nancy has been more huggy and nurturing, but also sad. She said Nancy hasn't been her usual happy-go-lucky self and has instead been more sensitive and has been asking for hugs. The teacher has noticed that there are times when she expects Nancy to get upset and yell, but Nancy catches herself and does not. Perhaps Nancy is experiencing and discovering new feelings from the latest track. This is a good thing!
Overall, Nancy was still showing improvements in language, however her sleep had not improved and she was still exhibiting impulsive behaviors and poor focus. As they described:
There are moments when Nancy's eye contact is great, but not consistent. We have also noticed a slight improvement in language in terms of sentence length and continued pretend play. She is also using more pragmatic language, especially with the immediate family. However, the sleeping is the same. She is still struggling with focus, following direction, sensory and organization. I have noticed more vocal outbursts over the last 3-4 days. She also has had bouts of sudden energy where she will run through the house laughing and screaming, turning on the dishwasher, ringing the doorbell to make the dog bark, running outside alone, climbing across the room by way of the furniture, dumping toys...Nancy received a disciplinary referral at school on Tuesday for bumping into a friend and knocking him down. She has not received a referral since Fall 2011. I was told Nancy was upset as she was getting off the bus because she didn't want to go to school and was screaming for me (this has NEVER happened - not wanting to go to school or screaming for me). They tried to redirect the behavior, Nancy became more agitated and bumped the kid in front of her...
The next track, #5, was even less stimulating as we tried to put the focus on calming her nervous system. Her response was initially somewhat negative but after a few days she began to calm down and many of her issues improved. According to her parent's feedback report:
She exhibited increased negative behavior over the first several days of the track (sensory, aggression, anxiety, etc), but her behavior, mood, focus, and language suddenly and dramatically improved over the past 7 days.
She is still having moments of uncontrollable and inappropriate laughter at home and at school as I've described before, but it is for shorter periods of time. It's easier to redirect and calm her behavior within 5-10 minutes versus 20-30 minutes. Her eye contact and language have dramatically improved and she is spontaneously asking questions with appropriate eye contact. We still see anxiety and moments of "weepiness". Yesterday she suddenly burst into tears. I asked her what was wrong and she said, "I remember something." I asked her what but she wouldn't tell me. She cried for 2-3 minutes, then wiped her tears and said, "I better. I happy now." She has also expressed to me this week that, "I scared of people sometimes." I am then able to talk her through it and comfort her. When she feels better she'll look at me, smile, and say, "I happy now." It's an unbelieveable break through! She had the best day of her life on Tuesday - great day from start to finish.
Sleeping has also improved. She has slept all night for the past 3 nights but if she wakes up alone in the morning she is afraid and screams.
The next several again focused on calming Nancy's nervous system in the hopes of continuing the positive path we were on and to further stabilize her sleep. After 4 weeks of new tracks (3 tracks) Nancy showed considerable improvements in language, social interaction, and problem-solving (parents gave an example of figuring out how to navigate the monkey bars from end to end).
Her sleep was improving but her father still needed to stay in her room in case she woke up. She also had high anxiety and was frequently:
"yelling and screaming vs using words to solve problems. Eye contact, focus, and language have decreased. She's been moody and quick to anger".
Nancy's parents reported that she recently had gluten and was on Spring break, which may have affected her behavior. Because of this we continued on the same path of highly calming tracks to further improve her sleep while still offering enough stimulation to address the language, socialization, and sensory issues.
Overall, Nancy was making great strides with more social engagement, focus and attention, and language skills. As described by her parents:
Nancy has been talking more and focus has improved. She is actually able to sit and watch a full 90-min movie. She is also able to sit and play with her littlest pet shop toys quietly for 15-20 minutes doing pretend play. She is also beginning to ask family members to play with her! She still has bouts of impulsivity related to sensory, but she is much calmer than in previous weeks. Nancy has recently been able to sit and play quietly with toys for 1-2 hours during her brother's baseball games. It's great!!
Part of the process of addressing sensory issues, especially with sensory seeking people is to help them become aware of their bodies. In Nancy's case this wasn't a positive experience. Because she wasn't potty trained, she became:
increasingly acxious about the potty during the last track and has begun screaming about the potty and several days in a row last week she had multiple accidents each day. This has not happened in months.
Her next few tracks focused on increasing her sensory processing with a particular focus on potty training. This appeared to work, as described by her parents:
Nancy has turned a corner with potty training! We are thrilled!!!! She is doing a great job urinating on the potty, although she has gone in her pullup once or twice in the morning (she sleeps in a pullup each night) - we don't even need to ask or remind. Nancy also defacated on the potty for the first time this weekend all by herself. She has no interest in wiping at any time.
The other area of focus for her last tracks was making sure that she was sleeping well and that her dad could sleep in his own room with his wife. According to Nancy's mother:
Sleep has improved and my husband is no longer sleeping on a mattress on the floor of her room. The last two nights she has been able to sleep by herself and she does need the light to be on the whole night. However, there have also been two nights over the last week when she has woken up multiple times during the night and needs someone with her to get back to sleep.
Nancy continues to make progress and continues to receive new REI tracks when she has plateaued on the past one (usually every four weeks as part of an extended REI Custom Program).