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.

College Admissions Testing and Autism

This contribution is from Parent Advocate/Trainer Nancy Popkin.

Back when my son was diagnosed with autism, I couldn’t imagine him going to college, let alone surviving his school years. But here we are, sixteen years post diagnosis, with a high school graduate who is now a college freshman. If college is in your child’s future, now is a good time to start planning. There are so many steps along the road to college for anyone and the path is more circuitous for someone with an autism spectrum disorder, but here I want to address one step along the way, college admissions testing.

Possible Standardized Tests
Most colleges today require students to submit scores for the SAT or ACT as part of the application process. These tests are administered by the College Board and the ACT (formerly American College Testing Program), respectively. In addition, some students with autism diagnoses may be taking AP (Advanced Placement) Exams, also administered by the College Board. But even before your child takes his/her first SAT or ACT, there is the PSAT/NMSQT. If your child is following the standard course of study and working toward a Future-Ready Core Diploma Track, they will most likely have their first exposure to college testing with the PSAT in October of the tenth grade year.

Accommodations
The test will be administered by your child’s high school, but here’s the catch: your child’s testing accommodations, as outlined by the IEP, do not automatically apply to the PSAT or subsequent standardized tests. There are steps you must take, beyond the IEP to assure that your child has testing accommodations for the PSAT and any other College Board tests that will follow. The same is true for the ACT. To learn more about the testing accommodation process, what documentation is required, and the timing for applying, check here for the PSAT, SAT, and AP exams,  and here for the ACT.

For the most part, there is someone, either a school counselor or testing coordinator, who applies for the testing accommodations for your child. Your child’s EC teacher should be able to tell you who this is at your school. I would encourage parents to be proactive and contact this person in 9th grade to get this process started rather than waiting for them to contact you. The accommodation application needs to be submitted seven weeks or more before the test your child will take. So if you are planning for the PSAT administration in tenth grade, the end of August is the latest you should be filing for testing accommodations. Even earlier is better as sometimes the College Board will request more documentation before granting some of the accommodations, so time for this further submission should be provided.

Some more unusual accommodations may not be approved. One accommodation my son had on his IEP was to take all tests in pencil (some of his teachers required essays in pen). We applied for this accommodation well in advance of the AP US History exam (also administered by College Board) but it was denied. This gave us time to demo tons of different types of pens and have him practice writing with the best one so he could pull off the essay (he did great).

Once the accommodations are set, you will not need to reapply for each test. You will just need to bring the accommodations confirmation letter your son/daughter receives to each test he/she takes.

Preparing for Test Day
With the exception of the PSAT, you will need to register for testing days on your own if your son/daughter is taking the SAT or ACT. Go to the respective links provided earlier to find out possible test dates for the respective tests. To determine which tests you need to take, you will need to begin a college search and find out which tests are required by the colleges to which your son or daughter is hoping to apply. Don’t leave testing to the last minute in case a retest is desired to get a better score. For some students taking the test twice is a good idea. The first time is for getting used to taking the test as there will be some new experiences when taking the test. The second time things will be more familiar.

Once you have registered for the test, put it on a calendar and come up with a plan for preparing. There are tons of study guides out there. College Board will email a single practice question every day if you want. We actually did not have our son do too much preparing for the PSAT or SAT. We didn’t want him to get anxious about it and we weren’t sure if he would generalize the practice to the actual test. For other students, it may be appropriate to review the different sorts of math problems and verbal reasoning questions to expect, as well as the expectations for the writing section.

Closer to test day, make a schedule for your son or daughter to know how the day will proceed. The College Board tells you exactly what you are allowed to bring into the testing location. They are very strict about this, so discuss this in advance as well. Get these things ready the night before the test. There is lots of good information about what to expect on the College Board website.

On Test Day
On test day, you will not be allowed to escort your son or daughter to the proper room or talk to the proctor, so make sure they know how to self-advocate if they need to. This is especially important if they are taking the test in a school other than their own high school, where things are familiar.

My son took the SAT at an unfamiliar high school, so I went ahead and prepared a page for him to give to the proctor in his testing room. He and I discussed this in advance and he helped me write the page. We provided his name and contact information and my contact information at the top. If you choose to do this, keep it brief and simple. We also provided the following information on this page:

Gray has a diagnosis of autism. Things he might do that are due to his autism:

Make audible silly sounds.
Pop out of his seat and flap his arms or hands.
Sit on his knees and hang his head below the seat of the chair.
Make grunting sounds if he is frustrated.
When frustrated or scolded, he may hit his head with his fists.

Please redirect Gray by telling him what he should be doing instead.

Gray may need help when using a telephone, finding a restroom, or knowing when he can have a break.

On test day, I did take my son into the testing location front door and immediately found an adult to help him figure out where he was to go. I had my phone on and hung out at a coffee shop near by. If your child has extended time, the testing session will last 50% longer than other students. So expect to pick up your child five and a half hours later.

When Gray came out of the testing center, he was accompanied by someone who clearly was making sure he got out of the building safely. She even reported that he did great! He looked at me and said, “You owe me!” I do find it so ironic that the kids who need to get up and move around the most, have to stay the longest to take these tests, so I agreed with him. I did owe him and told him how proud I was that he handled the stress of the test and a strange location so well! I offered to do whatever he wanted for the rest of the day! But all he wanted was a Hershey Bar! Wish granted.

These standardized tests are just one step of many in preparing for a college experience. With careful planning, our kids can have a positive testing experience and do their best. Then it is on to the application, college visits, deciding where to go and moving on!!

A great resource is the book, Realizing the College Dream with Autism and Asperger Syndrome by Ann Palmer, available at the Autism Society of North Carolina Bookstore.

Written by Nancy Popkin, Parent Advocate/Trainer. To contact Nancy, please send an email to: npopkin@autismsociety-nc.org.

 

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.

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.

April is Autism Awareness Month

April is Autism Awareness Month

During the month of April, the Autism Society of North Carolina encourages the public to learn more about Autism Spectrum Disorder (ASD) and the resources available to individuals on the autism spectrum and their families.

Autism affects 1 out of every 110 children born today, making it the second most common developmental disability. On average, more than two North Carolina families have a child diagnosed with autism every day. There are nearly 60,000 individuals with autism in North Carolina.

The need and demand for autism services continues to increase with the rate of autism incidence. Necessary services for children include early intervention, educational options, and speech and behavior therapies. And adults with autism need vocational assistance, social skills training, and housing.

“The Autism Society of North Carolina has been the leading autism advocacy organization in our state for over 40 years,” says Tracey Sheriff, Chief Executive Officer for the Autism Society of North Carolina. “Autism is a growing public health concern that impacts every county in North Carolina. Autism Awareness Month is the time to learn more and get involved.”

To celebrate Autism Awareness Month, the Autism Society of North Carolina and its statewide network of local chapters will provide opportunities to increase awareness and make a difference in the lives of those affected by autism. For a complete list of training workshops, events, and promotions, please visit http://www.autismsociety-nc.org or call 1-800-442-2762.

Background:

Autism Spectrum Disorder (ASD), which includes Autism, Asperger’s Syndrome, and Pervasive Developmental Disorder-Not Otherwise Specified, is a lifelong developmental disability that typically appears during the first three years of life. Currently, there are nearly 60,000 individuals with autism in North Carolina and more than 1.5 million people with ASD living in the United States.

The Autism Society of North Carolina was founded in 1970 by a group of parents who were concerned about the lack of diagnostic and treatment services for their children. Since then, the Autism Society of North Carolina has become the foremost resource in the state for connecting people who live with ASD (and those who care about them) with resources, support, advocacy and information.

Additional information about Autism Spectrum Disorder and the Autism Society of North Carolina is available by calling 1-800-442-2762 or by visiting http://www.autismsociety-nc.org.