Thursday, January 31, 2013

Brotherly Love

Here's a heart warming video that Spencer Timme made about his older brother Mitchel who has autism. I think you will enjoy it!

Friday, January 25, 2013

How to Help, When to Help, and When to Leave me Alone?

Recently I became acquainted with a blog site I had not visited before.   The SquagTM blog is a place to come and read about new ideas in ASD that relate to health + home life, school + sports, love + friendship, and the opportunity to be creatively fulfilled. Their experts are parents, professionals, and kids that speak their mind and always – always challenge us to think twice before defining the word autism.

Of particular notice to me was an entry about how best to respond to students when they are stuck. Although all students are different and what supports and accommodates one is not guaranteed to work with others, here are some great ideas of things to consider when students get stuck.

Saturday, January 19, 2013

"High Functioning or Low Functioning? Yes, I am!"

Most weeks I encounter well intentioned staff and families talking about students with autism in terms of functioning levels. I have never been a fan of the term "high functioning autism" because if there is a "high functioning autism" there must be a "low functioning one". When students have no reliable means to communicate to us what they know, feel, understand, want -- how is it that we can come to any conclusion about their functioning level? The absence of strategies to understand how students function often leads some to the conclusion that students are "low functioning", and with that assumption, most often comes reduced and limited opportunities and expectations.

Madison's very own Judy Endow, noted author and self-advocate, has released another insightful blog entry where she talks about "high and low functioning". I hope it resonates with you as much as it does with me.

Thursday, January 17, 2013

Medical vs Educational Autism

As you are probably aware, currently there exists a different framework for identifying individuals with autism educationally and medically.  Wisconsin Department of Public Instruction's eligibility criteria doesn't differentiate between different types of autism and uses to term "autism" to broadly label students who meet the state's autism eligibility criteria.   Medically, pervasive developmental disorder (PDD) is a broad umbrella diagnostic criteria that is utilized and 5 subgroups of PDDs are differentiated: autism, Asperger's syndrome, Rhett's syndrome, Childhood disintegrative disorder, and PDD-NOS (not otherwise specified). Educationally the term "autism" is used broadly, medically it is used to described what some think about as "classic autism".

This difference in how individuals are described and labeled educationally vs medically is about to change as the newest version of the Diagnostic and Statistical Manual of Mental Disorders (which provides a common language and standard criteria for the classification of mental disorders) plans to not differentiate among different subgoups and use the term autism spectrum disorder as the broad umbrella diagnostic label.  There has been much discussion about this proposed change and many fear that those individuals who met criteria for various subgroups of PDDs (in particular Asperger's Syndrome) may not be identified within the proposed DSM-V's diagnostic criteria for autism spectrum disorder. Confused?  Check out this link for more discussion and a video that outlines the proposed changes in DSM-V.

Monday, January 14, 2013

Aspergers and Violence - Let's Stop the Rush to Judgment

In December, a horrific tragedy occurred in Connecticut.  As you are probably aware, the news was flooded with information about the killer having Asperger's and many stories were released about the connection between those with Asperger's and violence.  Check out the thoughts and opinions of noted authors and self advocates John Robison and Judy Endow.  They provide compelling and convincing arguments that discount any thoughts, beliefs, or arguments that a connection exists between autism and mass murder. 

Sunday, January 13, 2013

Is your student "resistant, oppositional and noncompliant"?

Here's a great post from the Autism Discussion Page" by Bill Nason on the topic of "resistant, oppositional and noncompliant behavior" and what you can do to help support your students in those situations:

Many children on the spectrum have problems with following the lead of others, and are frequently oppositional. This is frequently seen as “intentional” noncompliance, and the child is often labeled as Oppositional Defiant Disorder (ODD). These children frequently have to control all activity and interaction, lead the activity their way, and refuse to follow the lead of others. When we press the issue with them, they will often act out to re-establish control. This reaction can occur if they don’t get something that they want, are pressured to do things that they wish to avoid, and whenever someone is trying to lead what they are doing. There can be a variety of reasons why a child on the spectrum will be so resistant. Here are several reasons why and strategies to support them. This list is not all inclusive, but common issues.

1. Because of the variety of processing problems (sensory sensitivities, delayed information processing, auditory processing difficulties, etc.) many children on the spectrum feel safe only when they are leading and controlling everything they are engaged in. “Uncertainty” scares them, so they need to control everything in order to maintain predictability to their world.

Suggestions:

a. Respect and accommodate for sensory sensitivities and use a sensory diet to calm and organize the nervous system.
b. Break tasks down into smaller parts, make them concrete with visual strategies, provide information in small bits that are clear and concrete.
c. Let the child pace the speed that information is provided, and how they express what they know.

2. Because of the processing issues listed above, these children can become overwhelmed very easily. By resisting, and controlling what they are engaged in they can pattern how much stimulation they have to process, avoiding overload which overwhelms them. They can pace the information to meet their nervous system needs.

Suggestions:

a. Use strategies listed above under number 1.
b. Respect, avoid, and/or accommodate for situations that tend to overwhelm the child.
c. Teach the child coping skills for dealing with overload.
d. Teach the child (and those around them) how to appropriately escape situations that overload them (break card, say “no”, ask for help, etc.).

3. Difficulty understanding what is expected. Children on the spectrum have difficulty appraising what is needed, so they are either anxious about entering into new situations, or dive in to new situations without understanding what is needed (then acting out when they struggle). For these children they (1) do not know what to expect, and (2) do not know what is expected of them. They need the world to be very predictable so they know exactly what to expect.

Suggestions:

a. Preview, clarify and verify: Prepare the child before going into situations (1) what they can expect to occur, (2) what is expected of them, (3) how long it will last, and (4) what will come up next. Also, anticipate any problem areas and how to handle them (e.g. withdraw and regroup when overwhelmed.). Don’t assume the child understands, clarify and verify that they understand.
b. For new situations, while knowing the child’s vulnerabilities, try to make modifications and accommodations to reduce the impact. Again, preview these ahead of time.
c. During activities/tasks, “think out loud!” Provide a narrative of what is needed, and how to do it. This can help guide and coach the child through the tasks.
d. Use visual schedules to help provide predictability and understanding.
e. Ease transition by preparing ahead of time, and giving 5,3, and 1 minute reminders before transitioning between tasks.

4. From a history of constantly being place in situations where the demands are stronger than their skills to handle them, they have learned that it is simply safer to escape and avoid any activity that is not initiated and lead by them. So, they have to control all activity.

Suggestions:

a. By understanding the sensory, cognitive, and performance issues of your child, always look at how the demands can be lowered, presented differently, or more support provided to make them match the current skill level of the child.
b. Do the tasks/activities as “we-do” activities (do them together, helping each other out) to frame and scaffold the activity to maximize success. Match the demands to the child’s skill level, and do it together to support them through it.

5. Many on the spectrum have strong task performance anxiety. So when we ask them to perform, they will resist unless they know that they will be “perfect” at doing it. Because of their “black and white”, “all or nothing” thinking, unless they feel completely competent (which is often just in their preferred, self-directed activity), they will pull back and resist. It is an all or nothing response; resisting any activity that will take some time to learn.

Suggestions:

a. Understand the child’s comfort zones and stretch slowly.
b. Start where the child is at; keep it simply, build one step at a time, maximize success.
c. Find the “just right” challenge and stay within it.
d. When possible, do the activity together (we-do activity) so you can take the pressure off the child, thus lowering the task performance anxiety.

6. Some children have a hard time “initiating” a task. They simply cannot get themselves started. This is due to weak executive functioning (brain wiring). They need you to “jump start” them.

Suggestions:

a. Assist them in starting the activity, then fade out the assistance as they get going.
b. Some of the kids with executive functioning issues cannot remember multi-step directions. You may need to provide visual prompts for each step. When we give the child a task, give them verbal instructions, and then walk away, they may not be able to organize what is needed to carry it out. Don’t label this as noncompliance. Provide the necessary support.
c. Give written directions and a written outline (worksheet) to lead them from one step to the next.

7. Lack of motivation. Many children on the spectrum have low motivation to do things that are not exciting for them.

Suggestions:

a. Increase motivation by following “nonpreferred “ activity, with “preferred” activity. Simply use the activity that they enjoy to reinforce completion of other activity. First do homework, than watch T.V.
b. Catch them being good! Provide three times more praise and positive attention for being cooperative than for being resistant (scolding, coaxing, etc.). Minimize attention for noncompliance.
c. Build in token systems, star charts, sticker programs, etc, only if needed to increase motivation.
d. Some children are resistant when tasks are boring. Try and build new learning around their strengths and interests.

8. For children that say no and fight all “directions” ! Often labeled ODD

a. Pick your battles. Reduce 80% of all “requests”, demands, and directions. Telling them, or asking them to do things, will elicit an automatic no! They will resist all imperative statements (questions, prompting, instructions, directions, requests, etc.). It just gives them ammunition to be noncompliant.
b. Use more declarative language to invite engagement. For example “Wow…I could really use help with this!” or “I bet you are better at this then me!”, rather than “Billy help me do ___.” Invite without asking. It allows the child to feel them self volunteering to help; being in control under his own volition.
c. Provide no negative emotion to refusal. The two main things to avoid when child is resisting is “strong emotion,” getting upset, and any scolding, negotiating, coaxing, or bribing. They feed off the negative emotion (helps them feel powerful) and the attention that we give counseling, scolding, and coaxing. However you choice to respond to noncompliance, do it with little emotion, and with minimal talking.
d. For requests that the child “has to” do, use the following:
Get the child’s attention, face to face, eye level.
State the prompt in short, clear, concrete language.
Provide the child 10 seconds to respond (longer for delayed processing)
Repeat the prompt in firm manner; using same language.
Still no response (as long as you have been using the strategies above to support all vulnerabilities) then continue to stand your ground, saying nothing but repeating the same statement every 30 seconds.
For some children increase the assistance with physical guidance (unless it agitates them more), or simply wait until they are ready to respond.
Once the child respondes, provide support as needed, and reinforce all cooperative participation.
These strategies should only be used for those requests and blended in with the above positive strategies.
e. Often these children respond negatively to positive praise (just the opposite of most children). They read “praise” as you controlling them to do things. So, for these children do not praise performance, just let mastery be motivating.

9. Because of our wish to avoid a fight, many children on the spectrum have learned that by resisting, people back off and withdraw the demands in order to avoid a meltdown, or destructive behavior. By doing so we often get to the point that we pacify the child so he will not get aggressive. We coax and bribe the child to do things. Consequently, the child learns that by being noncompliant, and acting out, he can manipulate the people around him to give him what he wants, and to escape and avoid everything he wishes to avoid.

Suggestions:

a. Of course, build in above proactive strategies to match the demands to the child’s current skill level.
b. Use a visual schedule so the routine is consistent and predictable for the child, with preferred activity built into the schedule every 2-3 activities.
c. Do the activities as we-do activities as much as possible. Providing support and praise as you go along.
d. When child is resistant, take away the battle, and let the consequences teach the behavior. Tell the child “You are too tired to do it right now. That’s ok, you let me know when you are ready, and I will help you.” Show no emotion, simply back away and ignore noncompliance. However, the child cannot do any preferred activity until they follow through with the routine task.
e. If they complain, simply remind them that it is their choice, and you are there to help them when they are ready.
f. It is important that you are very clear in the expectations and consistent in following through with “life stops” until the child becomes responsive again.

As you see, there are different reasons why children on the spectrum are oppositional. However, assume that the child is doing the best that they can, given the situation they are in and their abilities to deal with it. Also, assume that the more oppositional, the more incompetent the child feels. Focus on helping the child feel competent, and responsiveness will increase. We tend to focus too much on forcing compliance, when we need to be assisting the child by taking away the fight, lowering the demands (at least at first), providing increase supports, and focusing on what they are doing right. Help them feel more competent, and they will follow your lead.

Consequences for Aggressive Behaviors

Frequently, I encounter situations where school teams are working with students with autism who demonstrate significant, physically assertive behaviors towards adults and peers.  Many times, these behaviors are demonstrated by students with autism who have limited or no conventional communication skills and by students who have a unique cognitive learning style that makes temporal sequencing and cause and effect situations difficult to process and understand.  Many times, when helping staff sort out and make sense of what's happening and how best to respond, some staff members feel that some sort of consequence (i.e., time out, response cost, or some other punitive intervention) is needed and advocate strongly that such interventions must be utilized.



Such interventions typically are not successful with most individuals with autism. In terms of reducing aggressive behaviors with students, we need to focus on why the behavior is occurring and teaching the students to communicate in different ways.  In the heat of the moment (so to speak) we need to see the behavior as emotional disregulation and focus on helping the student de-escalate and keep himself and others safe.  Applying some sort of negative consequence in response to the behavior in order to teach him or her to behave differently will not work.  Once the student becomes more emotionally regulated, attention can be given to the function of the behavior and proactive strategies utilized to teach the student to communicate in a more conventional manner. 

Great video, a must see!

Have you seen the movie Wretches and Jabberers yet?  If you haven't, here's a great video that you can watch about autism as experienced by Larry Bissonnette and Tracy Thresher (stars of Wretches and Jabberers) and others.  It's a powerful video that goes a long way in helping us better understand autism. 

Tuesday, January 8, 2013

Waisman Center Day with the Experts: Autism, 1/26/13


SAVE THE DATE:  Waisman Center Day with the Experts: Autism

To download a flyer about this event, go to www.waisman.wisc.edu/~palumbo/AutismDWE13.pdf
Hosted by the Autism Society of South Central Wisconsin and the Waisman Center, University of Wisconsin-Madison

Sponsored by the Friends of the Waisman Center

Waisman Center Day with the Experts: Autism Participants will learn about the latest advances in autism research, and will hear firsthand from a panel of experts-individual(s) diagnosed with ASD and their families.

Saturday, January 26, 2013
9:00 a.m. - 1:45 p.m.
(Complimentary coffee & bagels at 8:30 a.m.) Friends of the Waisman Center Auditorium
1500 Highland Avenue, Madison WI 53705

*9:00 a.m.-9:30 a.m.    Welcome and Introduction to the Waisman Center
Marsha Mailick, PhD, Director, Waisman Center

*9:30 a.m.-10:15 a.m.   Psychiatric Comorbidity in Children, Adolescents, and
Adults with Autism Spectrum Disorder
Janet Lainhart, MD, Professor, Department of Psychiatry Depression, anxiety, inattention, and other neuropsychiatric conditions occur commonly in children, adolescents, and adults with autism. These conditions add substantial burden to affected individuals and their families and are challenging for researchers and clinicians. The conditions make it difficult for parents, schools, community service providers, and clinicians to improve the lives and outcomes of affected individuals. Lack of understanding of these conditions in ASD may also be a barrier to more complete elucidation of the causes of autism. This talk will address neuropsychiatric comorbidity: what it is, why it is frequent in individuals with ASD, how it can be treated, and the difference treatment can make.

* 10:15 a.m.-11:00 a.m. Update on Prevalence Trends and Risk Factors for Autism
Spectrum Disorder
Maureen Durkin, PhD, DrPH, Professor, Departments of Population Health Sciences & Pediatrics This talk will provide an update on trends in the prevalence of autism spectrum disorders.  Associations between autism and risk factors such as pregnancy complications, parental age, birth order, gene mutations, socioeconomic status and co-occurring disabilities will also be described. Local, national and international trends based on the most recent data from the Autism and Developmental Disabilities Monitoring Network and other sources will also be presented.

*11:00 a.m.-11:15 a.m.  What is the Autism Society?
Susannah Peterson, Executive Director, Autism Society of South Central Wisconsin

*11:15 p.m.-12:00 noon  LUNCH-Optional, $5 box lunches (Cousins Subs) available
for purchase. Gluten free options available.

*12:00 noon-12:45 p.m.  Community Support to People with Autism and Challenging
Behaviors
Paul White, MA, Director, Community TIES, Waisman Center The Waisman Center Community TIES program has provided outreach behavioral support to persons with psychological, behavioral and emotional challenges for more than 26 years. This presentation will offer an overview of practical strategies for families and their community support teams to consider in providing such support to people with autism.

*12:45 p.m.-1:45 p.m.   PANEL DISCUSSION-A panel of experts that includes
individuals with ASD and family members.

Capacity is limited, please pre-register to attend the event at the Waisman Center.

To register go to: http://www.waisman.wisc.edu/events/experts/

For additional details call (608) 263-5837 or email to palumbo@waisman.wisc.edu