Get Me Started But Let Me Finish

Here's another interesting post on Bill Nason's Facebook page, Autism Discussion Page

Get me started, but let me finish!

Many children on the spectrum suffer from “self initiation” and “sustained attention” difficulties. These two functions are part of the “executive functioning” skills located in the frontal cortex of the brain. This explains why many kids appear to “lack motivation” and need to be jump started to do everything. The ability to initiate an action, especially if it is task related, is often impaired. For these children, they have difficulty taking the first step to get started. They tend to blank out and freeze. However, once the first step is made then they move forward with the action/task. This is the person that needs to be continually prompted to get up and “doing.” Unfortunately, such children are labeled as “lazy”, “unmotivated”, or worse yet, “incapable.”

Many of these same children also have problems with “sustaining attention”; staying on course until the task is completed. They become distracted very easily, and have difficulty concentrating long enough to follow through with sequential tasks. Again, they are often labeled as “lazy”, “unmotivated”, and worse yet “incapable.” Unfortunately, reinforcing these labels, is the child’s ability to “initiate” and “sustain attention” for the video games, and other special interests. “He can sit in front of video games for hours, so I know he can initiate and sustain attention!” The reason for this paradox is because the preferred interest is highly stimulating; alerting the executive functioning part of the brain, allowing it to focus. The problem comes when tasks are (1) low level of excitement, and (2) not a preferred activity.
Both of the above problems are also augmented by another executive functioning issue call “shifting gears.” This is the ability to leave one activity and transition to another. This is overlaps with the “initiating” function. This is especially evident when it comes to ending a preferred activity (video game) to do a nonpreferred activity (feed the dog). Not only does the child have a hard time starting an activity, but also stopping the activity. So, not only do you have to “nag” them to do something, you may also need to “nag” them to stop.

So, the message is don’t assume “incompetence or laziness” because you child needs to be supported to start doing everything. Stop “nagging” and getting angry. Most importantly don’t assume your child is incapable of “doing” and stop jump starting them. Try the following:

1. Try to build a structured schedule into your child’s day, so many of his routines stay consistent from day to day. This builds structure and predictability for the child. Over time develop picture, or written, schedules and task lists, so the child has a visual reminder of what they are doing, and what is coming up next. Checking off each task, when finished, cues them into what they are to do next. Task lists (or picture routines) can also help cue the child into the steps for each task.

2. To help the child stop one activity and move to the next (shifting gears), prepare the child with a warning. First get used to letting the child know what is coming up next, after completing the current task. “First you can watch T.V., and then it will be shower.” Then with three minutes left to go with the current task, remind the child “In three minutes we will be ending ___ and doing ____.” Then remind again with one minute left. This helps prepare the brain for what is coming up.

3. For children that have “initiation” problems, assist them in starting the first step, to jump start their participation. Try not to give repeated verbal prompts (nagging). If they do not respond on the first try, use a visual (hand them the tooth brush, if brushing is up next.) Provide support as needed.

4. If they have problems with “sustaining attention” you may need to stay nearby and provide occasional prompts to move from one step to another. For new tasks, until they learn the steps, try doing it together, assisting as needed, but expecting them to actively participate. By turning the tasks into “we-do” activities, you can bridge the brain difficulties until the task becomes automatic.

Over time, as the routines become more automatic, you can fade out many of the supports. However, these functions (initiation, sustained attention, and shifting gears) will always be weaknesses. The person will need to use such techniques to learn new routines. However, as they get older they learn to use lists and schedules to keep them organized.

In conclusion, do not lower your expectations, just provide the supports to compensate for the brain weaknesses that interfere with your child’s participation. Always expect active participation, and foster independence. “Help them get started, but let them finish!”

Help Me I'm Stuck

I recently came across a Facebook page entitled, "Autism Discussion Group".  This page was developed by Bill Nason, MS LLP to discuss tools that help children on the autism spectrum feel safe, accepted, and competent. Although each child is different, with their unique strengths and challenges, there are some common strategies that can strengthen the social, emotional, and cognitive security for most children on the spectrum.  Come learn, share, and support.


I found the page to have some helpful strategies and information that I believe school staff and families will find helpful.  If you are on Facebook, I encourage to visit the page and spend some time checking out all of Bill's great ideas.  In particular, related to past posts we have made regarding movement issues and accommodations, I offer you Bill's thoughts and ideas regarding what to do when students with whom you support get stuck:


HELP ME I'M STUCK
(Autism Discussion Page)

Does your child get stuck in an action that they seem to have difficulty shifting from? This might be a repetitive behavior, vocal noise, activity, or thought. With this problem, the child will initiate the behavior, task, or thought and seem to have difficulty ending it. They continue on and on in a fixated pattern.

Our ability to shift from one activity or thought to another is an executive function of frontal cortex of our brain. It allows us to initiate, implement, and stop a behavior fluidly with little difficulty. For many children on the spectrum, these functions are weak. Once a behavior gets started, and especially if it is a repetitive pattern that feels good, the child has difficulty shifting gears and moving on to the next expectation. Like a person who doesn’t know how to end a conversation, so he goes on and on and on.

Sometimes these behaviors are labeled as fixations, compulsive behavior, stereotypic behavior, or perseverations. All of these behaviors/thoughts have in common the difficulty ending the chain once it gets going. Often I see parents and teachers get upset and simply demand the child to stop, only to have the child blow up in an emotional rage. I think we must recognize that many times these behavior patterns are difficult for the child to stop, and they need to “transition” out of them. I have found the following successful in different situations and different children:

1. Some kids simply need a warning of when the behavior needs to stop. They are really not stuck, just hyper-focused and thoroughly into what they are doing. These child often respond to reminding sequence. Parents give 5 minutes, 3 minutes, and one minute reminders that the activity will end and what will occur next. These same children do well with clearly defined start and stop times to the activity. We often use visual timers to clearly define the beginning and ending of the behavior. These children often respond well to a picture schedule that lets them see what is coming up next, so shifting gears is easier.

2. For behaviors that are compulsive or perseverative, another technique can work well. First include yourself briefly in what the child is doing, without asking him to stop or directing him to do something else. Talk about what he is doing and turn it into a we-do. This draws the child’s attention from the task/behavior and onto you, before directing it on to something else. For example, I had a child who would engage in hand washing motions under the running water. It appeared he enjoyed the sensory stimulation, but would get stuck in the action and have difficulty ending the activity. He would get upset when the parent came in and told him to stop. Instead, we first eased the transition by the parent going in and including themselves in rubbing their hands together under the water, and talking about how good it feels. Then once they got the child attention shifted on them, they talked about what to do next, would turn the faucet off and move on. This “including themselves” in the action, interrupted the perseverative response and allowed the child to switch gears.

3. In addition to the above, you can also try creating a concrete ending to the sequence. In the example above, you might include yourself in the action first, then count to ten and turn the water off. I do this a lot with behaviors that include repetitive trials of the same behavior. I will say ok, we will do it five more times than stop. Together we count to five, and then move on. By giving them a concrete stopping point it allows their brain to transition.

4. Often I find that the person might need gentle touch to shift the brain’s focus. So, I will quietly say something to them, and gently touch them on the arm as I include myself in what they are doing. This tactile stimulation seems to jar them from what they are stuck on. This seems to break the neurological feedback loop that allows them to shift.

5. Some getting “stuck” is because the child starts an activity that doesn’t have a clear stopping point. They simply do not know when the task is completed, or when the work is good enough. These children will get anxious because they do not know when something is good enough, or completed. For these children we usually preview all activity ahead of time and let them concretely know when the task is completed.

6. For the hard to “shift” children, we will often follow the behavior that they frequently get “stuck” in with a favorite activity, so it is more motivating to shift (with one of the above strategies). This way we can more easily gain their cooperation in shifting from this perseverative pattern to a another activity that they enjoy.

Between the children’s tendency to hyper-focus attention on something of interest, and have difficulty ending one activity and moving on to the next, it is important to understand that part of this perseveration is a problem in brain functioning. Getting stuck in a neurological feedback loop often needs gentle help in transitioning. However, try and ease the transition, rather than directing the child to stop.

Autism and Music

“Listening to music while writing makes the flow better between my brain and my body….the different parts of my whole body frankly behave like they are separate, and the different parts seem to need to listen to the same beat to be able to move together like other people’s bodies do.”-Jeremy Sicile-Kira

Jeremy is a writer and advocate for the autism community. He is the first non-verbal  person with autism to have his own column in his high school newspaper, and to be a staff writer on his college newspaper.  Passionate about creating more understanding about people who are differently-abled, Jeremy writes articles, gives presentations and has co-authored his first  book, A Full Life With Autism:  From Learning to Relationships to Achieving Independence to be published by Macmillan in April 2012.

To learn more about the importance of music in Jeremy's life, click here.

Rethinking Autism

Anne Donnellan, David Hill, and Martha Leary have lead the field in our thinking and understanding of autism as a movement disorder.  This article is an interesting and valuable summary of their work and will be the basis of our December workshop, "Autism - Movement Difference and Diversity" [December 8th 4:00 - 6:30 at LaFollette High School].  School staff can register for the workshop here, parents and other community members can register for the workshop here.