Celebrating our Bookstore as Part of Autism Awareness Month

This blog post was written by Dawn Eberwein, Bookstore Manager for the Autism Society of North Carolina.

The ASNC bookstore is a unique place that provides information, resources, employment, and support for the ASD community.  We are a place for parents, self-advocates, teachers, practitioners, or anyone in a relationship with someone on the spectrum to who wants to find out more about autism.

Many parents come to the bookstore for the first time just after their child has been diagnosed to look for information to help them, their family, their child, and their child’s teachers understand the diagnosis. Every transition in a child’s life brings new adventures and challenges, so parents return looking for information on topics such as social skills, behavior, communication, bullying, and friendships. Parents often let us know about new resources that they’ve found so that we can share them with others. We are thrilled when parents who stop by or call us to tell us about a milestone that their child has met. They know we feel a personal connection to their child’s success.

Often, we think of a child when we hear of someone being diagnosed with autism, but adults are diagnosed every day, too. Spouses stop by the bookstore looking for resources to help with their relationship with their husband or wife and for information to help their children understand their parent’s diagnosis. Recently, a spouse came by looking for information for her and her newly diagnosed husband on understanding and managing their relationship.  We found a couple of books for her and one for her husband. She has been back several times to let us know which books were most helpful for her and to look for information on different topics as she and her spouse navigate their relationship.

Self-advocates contact us for resources, too. College students getting close to graduation want to learn more about navigating socially in the work place. Adults often want information to help their spouse better understand ASD and how it affects their relationship.

Three-fourths of our bookstore staff is on the spectrum. Our amazing staff members pack and ship our orders to families and schools all over the world and help us manage the daily operations of the bookstore. We also provide volunteer opportunities and summer internships for individuals on the spectrum. High school and college students on the spectrum volunteer and work summer internships to gain skills, experience, and a sense of confidence in the work place.

We are an important source of information for physicians, practitioners, and teachers. We supply pediatricians with resources for their patients’ parents. Recently, a group of teachers met with us to brainstorm about the most appropriate resources to meet their needs and the needs of their co-workers who work in self-contained and inclusive classrooms. We reviewed the latest materials on inclusion, social challenges, behavior, and reading comprehension. We scoured the websites of our suppliers to make sure that they got exactly what they were looking for.

All of our books, DVDs, and assessment kits are available online, and we provide personalized service and book recommendations via email, over the phone, or in person. We look forward to helping you during Autism Awareness Month!

You can reach Dawn Eberwein at 919-865-5087 or deberwein@autismsociety-nc.org.

Planning for the Future

by Linda Griffin, Parent Advocate Director

Parents of children with autism are often so busy just getting through the day that they forget to plan for the future.  And that future arrives sooner than you expect.  One day you are struggling with toilet training and IEPs and the next day you look up and your toddler is 6 feet tall and the school bus has stopped coming.  The time to plan for the future is NOW!

If your child is 5 or 10 years old, it may be hard to imagine what life might be like for them as an adult.  No one can predict what is or is not possible.  Begin by thinking and asking questions:

• Where will my child live, work and play as an adult?
• How independent will they be?
• Will they live/work independently or with support?
• Will they attend vocational school or college?
• How will they get from where they are now to where they need to be?
• Who can help us with this transition?

The one thing we parents know about our children with autism is that transitions are difficult.  Planning for transitions is extremely important.  If your child is in public school, a transition plan (also known as an ITP – Individualized Transition Plan) will be developed by the IEP Team (Individualized Education Plan) when your child becomes 14 years old.  The team may include the parents, teachers, guidance counselor, transition counselor, vocational counselor, friends, relatives, and other professionals. The team should also include your child.

This is a perfect time for parents to take advantage of the creative minds and the connections of this team of professionals, friends and relatives.  They can look at your child’s strengths and interests and then help to design a set of activities that can successfully move your child from school to adulthood. The plan should outline the training and support that will be needed.

The destination will be different for each student. Some will:

• Work independently
• Work with support
• Live on their own or in a supported apartment
• Go to vocational or technical school
• Go to college

But EVERY child should be taught, supported and encouraged to be as independent as possible. As I have said, planning is important.  Begin now.  Another way to plan is to attend the 2013 ASNC Annual Conference this February.  The theme this year is “Autism Grows Up” and will focus on preparing for adulthood.  Planners recognize that children with autism become adults with autism.  Take this opportunity to meet other families, learn from professionals, listen to the experiences of other individuals and think about the future.

Linda Griffin can be reached at lgriffin@autismsociety-nc.org or 919-865-5090.

A New Year, A New Approach to Challenging Behaviors

Editor’s Note – The following post was written by Louise Buchholz Southern, M.Ed., BCBA, Training Specialist for the Autism Society of North Carolina (ASNC).

As professionals working in the field of Autism Spectrum Disorder (ASD) intervention and as parents of individuals with ASD, it’s likely that we have all experienced challenging and persistent behaviors. These behaviors come in many forms including aggression, property destruction, non-compliance, and self-injurious behavior, to name a few. When we experience these behaviors in an individual with ASD, one of the first questions we should ask ourselves is, “What is the individual trying to communicate with this behavior?” What want, need, confusion, or fear is the individual trying to express? As one individual with ASD stated, “You can’t not communicate. Everything you say and do or don’t say and don’t do sends a message to others.”

Some behaviors take us by surprise, and seem to appear without any cause. However, if we operate under the assumption that there is always a reason for the behavior, we are more likely to take the action necessary to change behavior. Changing someone else’s behavior always requires a change in our own behavior first. So as the New Year begins and as we continue to face challenging behaviors, let’s assume that behavior is always meaningful and let’s ask ourselves these questions:

• Does the individual have a way to communicate his/her wants, needs, and choices all of the time and across contexts? In order to teach an individual the power of communication, we cannot compartmentalize their communication to certain parts of the day or to certain locations (e.g. only when the instructor directs the individual to a choice board that is affixed to the wall).
• Even if the individual is “verbal,” does s/he functionally communicate? For example, some individuals script from TV shows, or they repeat back what they hear rather than responding. Some individuals are nonresponsive to anyone other than people with whom they are very familiar. Some individuals use language that does not seem to make sense given the context. Some individuals label everything, but don’t use language to express wants or needs, or to respond to questions and statements. In all of these examples, while the individual is “verbal,” we need to explicitly teach and reinforce functional communication.
• Note: ASNC’s Training Department is preparing to launch a functional communication training workshop this spring. In addition, the Autism Internet Modules website http://www.autisminternetmodules.org offers a range of free trainings on evidence-based practices such as functional communication training and the Picture Exchange Communication System (PECS).
• Have we identified a behavior that we can teach and reinforce to replace the behavior that we don’t want to see?
• Are we effectively reinforcing those behaviors that we want to see? Are we applying consequences that are actually reinforcing /motivating to the individual? Are we reinforcing the appropriate behavior consistently, and are we making sure that the individual understands the connection between behavior and consequence (reinforcer)? Are we attending to (and reinforcing) those behaviors that we want to increase significantly MORE than we are attending to those behaviors that we want to reduce? Are we missing opportunities to reinforce the individual when s/he is doing what is expected?
• Are we delivering instructions/information in a way that the individual with ASD can understand?
• Are we visually structuring academic, leisure, and work activities so that the individual understands what to do, how much to do, when finished, and what next? Many individuals with ASD experience significant anxiety and frustration when they don’t understand the expectations, the “rules” of the game, or when the activity will be finished.
• Has there been a change to the routine or has something unexpected occurred? How can we better prepare the individual for these inevitable events?
• Does the individual have a strategy in place to regulate his/ her sensory needs? What self-calming activities do we need to explicitly teach? How does the individual indicate that he needs a break?

For more information about support services available to individuals, families and professionals through the ASNC Training Department contact Louise via email at lsouthern@autismsociety-nc.org.

For titles related to challenging behavior please visit the Autism Society of North Carolina Bookstore located at www.autismbookstore.com.

Action Needed: Personal Care Medicaid Changes Threaten Group Home Residents

Recent news reports have shed light on changes that will have a negative effect on individuals with Autism Spectrum Disorder and other disabilities who receive assistance through Medicaid’s Personal Care Services (PCS).

Please note that the Personal Care Services described in this blog are not the same personal care services delivered to individuals who are in the Community Alternatives Program for Intellectual and Developmental Disabilities (CAP-IDD) or those in the Innovations waiver program. – Editor

By Jennifer Mahan, ASNC Director of Advocacy and Public Policy

North Carolina recently changed the Medicaid eligibility criteria for people with disabilities to qualify for Personal Care Services, which is one-on-one care assisting people with things like eating, dressing, bathing and other daily living activities. These changes were prompted by a Medicaid rule that PCS delivered to someone living in their family’s home or an adult care homes have the same eligibility requirements.

Several options for eligibility criteria to use were presented for consideration during the 2012 legislative session. The one passed in the most recent state budget raised the eligibility criteria for PCS across the board which “saved” Medicaid several million dollars, but also resulted in making thousands ineligible for PCS. Here’s why:

• Residents of some group homes (often referred to as the 5600 or DDA group homes) for people with developmental disabilities and mental illness need Personal Care Services. Without the Medicaid funding for those services, group homes can no longer afford to provide care to their residents and support their operation. Simply put they have lost part of the revenue needed to keep the doors open.
• This month along with the loss of services, people began getting notices they must move. These people with disabilities, living on social security disability payments and unable to provide for much of their own care, now have nowhere to go.

You can read several new articles explaining how this crisis developed here:

• North Carolina Health News Coverage
• Charlotte Observer Coverage
• WRAL TV Coverage

On November 30th, the Speaker of the North Carolina House, Representative Tills, sent a letter to the Governor requesting that she call a special session of the Legislature to deal with group home funding and in the letter he promised that no other bills would be brought up for vote. The Autism Society of North Carolina thanks Speaker Tills for recognizing the critical nature of this situation in which thousands of people with developmental disabilities and mental illness may become homeless.

Now, the Governor must agree to the special session and Legislators must agree on how to fix the crisis. The Autism Society of North Carolina is working with the Arc of North Carolina and other advocacy groups to urge elected officials to call a special session of the NC General Assembly before December 31, which is when PCS services for many will end and threaten the loss of housing for thousands.

As of the posting of this Blog (Sunday, December 9) there has been no action on a special session. ASNC is asking individuals interested in this issue to become involved in the discussion. Here’s what you can do:

1. Sign the online petition to urge The Governor and Legislature to solve the Personal care crisis now!

2. If you prefer to contact elected officials directly, information is below. As always, please personalize your message by using your own words.

To contact Governor Perdue you can email her via the Office of the Governor email: governor.office@nc.gov

The message to the Governor is simple:
Please call a special session of the General Assembly and/or worth with Legislative Leadership to find a solution to the Personal Care Crisis for group homes and people with developmental disabilities.

To contact the Senate Leadership you can email Senator Phil Berger, President Pro Tem of the NC Senate at Phil.Berger@ncleg.net.

The message:
Please work with other Legislative leaders and the office of the Governor to find a solution to the Personal Care Crisis for group homes and people with developmental disabilities.

To contact the Speaker of the House Representative Thom Tillis, use email address Thom.Tillis@ncleg.net

The message:
Thank you for asking for a special legislative session and your commitment to finding a solution to the Personal Care Crisis for group homes and people with developmental disabilities.

We also encourage you to contact your own NC General Assembly Senator or House Representative and let them know of your concerns. To find your elected officials click here.

If you have any questions about these or other public policy issues please contact Jennifer Mahan, Director of Advocacy and Public Policy at jmahan@autismsociety-nc.org or 919-743-0204,  extension 1116.

Stuffed Allies and Dignity: How Understanding Anxiety Can Save the Day

Editor’s Note: This week’s blog post was submitted by Jennifer O’Toole, award-winning author of Asperkids: An Insider’s Guide to Loving, Understanding and Teaching Children with Asperger Syndrome. O’Toole, her husband, and her three children all have Asperger Syndrome.

The year was 1982.  Ronald Reagan was in office. “Don’t You Want Me, Baby?” was on the radio, and the smiley face emoticon was born.  But, like, what I most clearly remember about, like, that year isn’t valley girl speech or, like, Ms. PacMan.  It is E.T., the Reeses-pieces eating alien who I was absolutely sure was hiding in my closet.

Try as they might to counter my certainty that there was not, in fact, an extraterrestrial lurking in my bedroom, my parents couldn’t convince me otherwise.  So I clutched my teddy bear for reassurance, and sat there in my bed — scared.  Now, I’m not talking nervous or “trying to sneak into bed with Mom & Dad” scared. No, I mean to the pit of stomach, cold sweat, freak out if you touch me terrified.

I’d venture that most everyone reading this has felt that kind of fear at some point in his or her life.  But try this for me: allow your body, not just your mind, to remember that feeling — your heart thudding, mind racing, stomach lurching, your little self ready-to-run-or-fight against any shadow.  That’s what fear actually is, you see. It’s not a concept or idea, it’s not a topic to be discussed rationally.  Everything about fear is primal – irrational…and bodily.  There’s no logic involved.

Anxiety is little bit different. Imagine the volume of that fear is turned down just a bit so that’s it’s not so immediate a threat or so acute a danger.  Instead, it’s replaced by a gnawing, jittery, ever-present sensation of waiting for the threat….waiting for the fear.  It’s like living with the “Jaws” music playing.  You don’t see the danger.  But you surely know there’s something “out there.”  That’s anxiety.

What most neurotypicals don’t realize is that we spectrumites, whose bodies and minds are wired differently, live with varying levels and intensities of almost perpetual anxiety. That may sound paranoid — but it’s not.  Paranoia is irrational fear.  Most Aspies or autistics have been bullied (often many times over by children, adults, even teachers and family members), are constantly assaulted by sensory input, must fend their way daily through social situations which seem random and chaotic, and often think we are at the top of our games when, in fact, the rug is about to be pulled out from under us.  In other words, our anxiety is an absolutely rational reaction to the experiences we have.

So why does this matter? Simple. Pull at a weed and simply tear off the leaves, and what happens? Nothing new. The weed grows back. Similarly, if teachers, caregivers, therapists, spouses and friends focus their energy on tantrums and meltdowns, obsessions or rigidity, they’ve only torn at the leaves.  Nothing will change — either in the behaviors or in the heart of the loved one.

But grab that weed near the base – dig at the roots, and pull – gently.  What happens? Yes, another weed may grow elsewhere, but this one is gone.  Anxiety is that root.  It is the seed from which our topical fixations and “overly sensitive,” routine-driven, black/white, obsessive behaviors arise. We are trying to catch the rain. We are trying to create predictable order in a chaotic, often random world….by asking a million questions, by challenging exceptions to rules, by scripting dialogue we know was funny (once) or dictating play.  It’s not that we want to be unlikeable or difficult or dominate the conversation with topics you don’t enjoy.  We just want to feel secure, safe — and to be able to stop the endless waiting for unwelcome surprises.

What that means for those who work with, live with or know folks like me, my children or my husband (all of whom have Aspergers):

• Respect the fear, don’t punish self-protection.  When you feel truly scared (think back now!), are you polite? Easy-going? If you know danger may very well be waiting outside the front door, would you skip and whistle on out? No. You’d do or act however you needed to in order to feel safe again.  That’s a GOOD thing.

• Reconsider disruptive behaviors (meltdowns, outbursts, “heels dug in” resistance) not as disobedient or disrespectful, but as the individual’s method of protecting himself from something painful (sensory?) or scary (socially, physically or emotionally).  Show empathy or compassion for those very real feelings.  That’s going to get you BOTH much further than a shouting match ever will.

• Plan ahead, communicate, and make the environment predictable.
  • Use visual aides to assist progression through multi-step sequences
  • Keep materials (from paper to shoes) in consistent locations
  • Mention routine changes as soon as possible
  • Play “what if” to walk through “worst case scenarios” and discover that there is almost always a solution or safe response within our control
  • Make play-dates “task-centered” (baking cookies, building Legos) rather than a free-for-all
  • Tour new environments during off hours (school, religious education, club activities)

• Teach coping mechanisms
  • (deep breathing) “smell the flowers. blow out the candles”
  • allow the use of hand-held fidgets
  • role-play social scenarios
  • eliminate timed performances
  • give tasks or structure to “free time” (i.e. recess)
  • assign a few trustworthy “buddies” to be work partners, share lunch, and answer questions be they social or academic so a child doesn’t have to search for support

• Allow time for special interests.  Delving into dinosaurs or the British monarchy may not make you feel relaxed, but a bounty of unchanging facts is something in which spectrumites can immerse ourselves and escape (for a limited time) to a safer, more ordered place (“Concentration, said Jack Nicklaus, “is a fine antidote to anxiety.”)

There was no alien in my bedroom back in 1982, of course.  But in thirty-seven years of living as an Aspergirl, I’ve met very real danger in places and with people that should have been as familiar and safe as a childhood haven.  Those of us on the spectrum want to be liked, we want to please — even to impress.  We certainly don’t want to be the problem.  If you can remember that in the hardest moments, if you can remember what the feeling of true fear is, if you can hold first in your mind that the behaviors society likes least are actually the fruit of very real anxiety, then you can respond not with anger or shame, but with understanding and a plan.

Courage is, after all, the choice to feel fear and to master it – to do the “scary stuff” anyway.  Those of us on the spectrum have to choose to be courageous almost every day…like that little girl in the bedroom back in 1982, when we are afraid (even if that fear is unnecessary), we certainly don’t want to feel condescended to or be punished.  We need understanding, respect, patience.  Like I did years ago, we need allies — stuffed or otherwise — to cling to until we can steady ourselves…until we can see, peeking through the fear, the safety and calm of an unsullied tomorrow.