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.

Extinction Bursts and the Importance of Full Disclosure

This blog post was written by Dr. Aleck Myers, Clinical Director for the Autism Society of North Carolina.

Recently, I wrote a behavior support plan for an individual who frequently tantrums. Great methodology, if I do say so myself! It was well written and explained the rationale of the program to family and staff, stressing the importance of strengthening functional communication (the individual was communicating beautifully, just not the way we wanted him to! There’s nothing like a good sit-down-and scream-bloody-murder to let us know when he wants something or wants to quit something!).

We need to give people acceptable tools to express their wants and needs. So the program offered ways to do that. And the program stressed the importance of not paying any more attention to the tantrum behaviors than absolutely necessary. In other words, tantrums were to be placed on “extinction” (removing all attention to the behavior. Note though: not the person; the behavior). So this psychologist left the training feeling good about the program and the willingness of family members and staff to implement the program correctly and collect all of the necessary data.

Two and a half days later, I received a distressed email from Mom. Tantrums were through the roof in frequency, she was exhausted, and she felt that the program was making the individual’s behavior worse. It was then I realized, with great chagrin, that I had failed an important part of my training…I hadn’t described the “extinction burst.”

When you begin to ignore behaviors that are socially reinforced, the behaviors will increase in frequency and intensity almost immediately. This is the extinction burst. You can think of it as, hey, this used to get me what I wanted, now it doesn’t…that makes me mad, so let’s try harder! As a professional, when I see this burst in behavior, I feel assured that the program is going to work. From this parent’s point of view, though, not having been warned, things were getting much worse. Luckily, I was able to reassure the mother that this was not a bad sign, and if she and the staff hung in there, things would improve soon. Mom is a real trooper, and she, Dad, and the staff persisted.

I called the mother a couple of days later and was greatly relieved that a) she was still talking to me, and b) the afternoon after she had emailed me, the unwanted behaviors decreased, and that things were definitely improving now. This was further enhanced by an email two days later, indicating considerable improvement. And that the emphasis on strengthening communication was continuing.

Now if I can just improve my own functional communication!  I think I learned my lesson…

You can reach Dr. Aleck Myers at amyers@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.

Getting the Most out of the Holiday Season

by Linda Griffin, Parent Advocate Director

The holiday season is upon us – a time of joy and excitement.  But for parents of children with autism, it may only bring excitement (also known as chaos)……and very little joy. Sometimes this lack of joy is simply because we have unrealistic expectations. We’ve seen too many idyllic scenes depicted on cards and on television. But real life doesn’t look like a Norman Rockwell painting for most of us.

Many of our children do not enjoy caroling, holiday parties, special treats, shopping, decorations, hectic schedules, or visiting friends and relatives. Uh-oh.  Does this sound like all the things that will be happening at your house?  If so, let’s revisit holiday expectations and consider what adjustments can be made so that both you and your child can enjoy the days to come.  Here is a list to consider:

• Plan ahead.
• Display a calendar – include activities, parties, and travel details. Be sure to note the dates and times of when you will leave and when you will return.
• Use a daily schedule so that your child is aware of what will be happening during the day. This can reduce anxiety.
• Use visuals– less talk amounts to more effective communication.
• Use social stories to prepare children for rituals and traditions.
• Consider what traditions might not work for your child – visiting Santa, attending parades and/or concerts, decorating every room of your home, etc.
• Remember sensory issues that might adversely affect your child’s experience of sights, sounds, smells, and touch. Try to make accommodations, such as ear plugs, headphones, or a distracting toy.
• Allow your child to retreat from activities if necessary.  If you are hosting at home, let him retire to his room. If visiting friends or relatives, create a private space designated especially for him.
• Educate friends and family about your child if you will be spending time with them.

This last suggestion brings me to another point: whenever you can educate others about your child, it will pave the way for good relationships all around. However, there are some folks – including those in your own family – that will not “get it.” They may question your parenting skills or think your child is a brat. Take a deep breath and remember that you cannot change another person. You can only offer information. It is up to them to accept it. If that doesn’t happen, then it is a problem that belongs to them – not you.

Sometimes happiness is a choice we make. Don’t expect perfection from yourself or others. Balance the excitement with peace and the joy with quiet moments. Connect with other families who have children with autism to share your feelings and experiences. They can understand your life like no one else can. Learn to laugh. Find joy. And may your holiday be very merry.

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

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.