Asperger’s Syndrome and Violence: Let’s Stop the Finger Pointing

The recent events of violence this past week on the streets of Isla Vista, Calif., near the University of California at Santa Barbara, has 20752460_sleft scores of people shaking their heads in horror.  A media talking point noted that  the gunman was troubled and had been diagnosed as having Asperger’s syndrome.

A headline already anticipated an inevitable and reasonable reaction, “Asperger’s Syndrome To Be The Scapegoat For The Santa Barbara Shooting Like Adam Lanza?” Inquisitr asks[1]
Is there really a connection? There is an important saying in statistics: correlation does not imply causation. What this means is that just because some of the recent gunmen had a diagnosis of Asperger’s Syndrome does not mean that people with Asperger’s are more likely to be killers, or even violent.  That would be equivalent of saying all Caucasian male teens are more likely to be killers, since most of the high profile mass shootings on campuses over the past 10 years have been Caucasian, and male and teen.  But just because that fact is true does not mean that you can point your fingers at young male Caucasians. Or people with Asperger’s.

WHAT IS ASPERGER’S ANYWAY?

Asperger’s syndrome is a diagnosis for people and children who are on the high functioning end of the autism spectrum.  Although as a specific category, the term “Asperger’s Syndrome” named after Hans Asperger who coined the term, has been deleted from the newest diagnostic manual, DSM-5,  it still has a strong following among parents and grown diagnosed children who refer to themselves as “Aspies”.  Aspies, are people whom you may know who are decidedly quirky. Different and obsessive, they may be excessively devoted to a narrow range of subjects and may struggle with interpersonal skills.  But just because they are socially awkward and obsessive does not mean that they are robotic.  Aspies feel things very deeply and the way they show their emotions may be non-conventional.  That still doesn’t turn them into killers.  An angry and vengeful Aspie is just as likely to turn to violent revenge as your next door neighbor’s son; in other words, the possibility exists but is random.  There is no research to suggest that people diagnosed with Asperger’s Syndrome are more violent than any other group.

FINGER POINTING:

In the wake of a traumatic disaster, there is a huge desire to finger point.  With hurricane Sandy, it was the finger pointing at global warming. With 9/11, it was finger pointing at Muslims. And with violent shootings on campuses,  are we going to point to students with Asperger’s? The fault of course lies with the individual gunman ….and the rest of us as well.

Hear me out:

WHAT WE CAN DO:

There are 2 radical changes that need to happen in the USA:

1.  Expand mental health services:  as the numbers of kids with atypical disorders are expanding, the availability of mental health services must also expand.  The World Happiness Report of 2013 notes that even in countries which have available mental health services, the vast population of those who need these services are largely under-served.  We must make treatment available, not just for the identified child but also parenting support for the parents of that child.  It is inconceivable that mental health treatment or lack of it is left up to the individual parents, who largely have no clue how to help when they are struggling with their diagnosed child who is atypical.   We must lobby to increase support of all mental health practices.  There is no question that most interventions in the form of any type of psychotherapy can greatly help provide troubled people with improved coping skills and increased resources.

2. Practice radical kindness:  The truth is, there is more diversity among us than sameness, yet people are incredibly exclusionary.  This begins from the earliest ages.  Embrace those who are different, those who are socially awkward or not physically beautiful. Invite with an open heart those who are handicapped, intellectually weaker or neurologically atypical.  Teach your children to open their hearts to those around them who are of different skin color, different abilities and different social interests.  Teach by example.  Invite over a family who has a child who is struggling.  Talk to a person next to you in class who looks a bit quiet.  Remember that everyone is struggling for the same things: to be accepted, to be seen and to be appreciated. We can learn to become a more welcoming society if we only open our eyes to those who are struggling.  Bullying,  exclusivity, elitism and ostracization  are issues we can tackle, as adults, as parents and with and for our children.  We can do this.

 

[1] Read more at http://www.inquisitr.com/1265968/elliot-rodger-aspergers-syndrome-to-be-the-scapegoat-for-the-santa-barbara-shooting-like-adam-lanza/#43OF7WGETm2lhKvx.99

Is Sports a Game Changer for Your Atypical Child?

It’s spring and sports season is heating up.  For many families of atypical children, this is a stressful and maybe even sorrowful time.  6454232_s

Why? Because many atypical children have so much difficulty participating in mainstream sports activities.  This can be difficult for parents who fondly recall their own involvement with sports and deeply want their children to experience the same joy, camaraderie and health benefits.  Despite the fact that parents are well aware of  the importance of sports and exercise for children, many atypical children will end up at home in front of video games for a variety of reasons, either smarting from previous defeat, humiliation, or injury from a group sport, or fearful to try a sport, or simply uninterested.  And while there are a lot of good reasons to participate in sports,  there are also a lot of good reasons to protect your child from a sport that he or she may not be able to manage, especially competitive sports.  Issues such as sensory overload, processing difficulties, coordination difficulties,  ADHD or excessive shyness can contribute to a sense of ‘why even bother’ or a real fear that your child might become injured, humiliated or just not be able to ‘get it’.

“Limits will not define me, my will defines my limits”

This is the slogan of Bounce Out The Stigma, a sports opportunity for children with all types of special needs.  Mike Simmel started The Bounce Out the Stigma Project, Inc. in 2005 as a grassroots campaign to educate the public, teach healthy lifestyle choices and empower youth, based on his personal experiences.  He created the program that provides sport events and summer camps for children, regardless of which label they have. it is these labels that holds them back, not their ability, according to Mike.  Currently he offers programming for children with Autism, Attention Deficit Disorder ADD /ADHD, Bullying Events that Create Peer Mistrust, Epilepsy, Slow Motor Skills, Athletic Anxieties, Social Unease, Juvenille Diabetes,  Learning Disabilities, Self Esteem Issues, Adjustment and Emotional difficulties. You can learn more about Mike and his project at:  http://bounceoutthestigma.org/

While not every neighborhood can offer a program for every type of disability,  there are enough sports activities in every city to get all types of children involved.  Think beyond the typical big team sports if you haven’t been able to get your child involved in the top competitive sports.  Not every child needs a team sport but all children do benefit from movement. Think swimming, jogging, biking, or even participation in 5K walks with families for special charities. Don’t forget trips to the beach, an introduction to surfing,  miniature golf, or tennis or ping pong.  Some kids have success in martial arts or yoga or gymnastics.

Special Olympics offers opportunities in a variety of sports for individuals with intellectual disabilities; The Little League Challenger Division and the Miracle League both allow children with physical and mental disabilities to play baseball in a supportive, non-competitive environment.  These are but a few suggestions.

And the best sport of all, being outdoors with mom or dad.  Take a ball or a frisbee to a park or a picnic lunch to the top of a short hiking trail.  You will be creating positive memories and healthy habits for a lifetime, for the both of you.

What role did sports play in your children’s lives? Please share your experience so other families can learn from you!

How NOT to Raise a Child with a Disability

Originally posted on Raising 5 Kids With Disabilities and Remaining Sane Blog:

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When your child is a toddler, focus on all the things he can’t do. He’s not walking as soon as other children. He’s not talking as good as other children. It is embarrassing to take him out in public because everyone comments on his looks. Blame your spouse for his disability. Or, equally worse, blame God. Whey has He forsaken you? Why has He saddled you with this tremendous burden? Spend your child’s infant and toddler years lamenting the sadness, disappointment and loss.

As your child gets older and goes to school, always blame the teacher or the principal if he can’t do something. After all, it MUST be their fault. They are discriminating against your child if they try to make him behave or actually complete his school project. He has a disability! Doesn’t that come with the right not to have to do homework or obey the class…

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Wake Up and Smell the Coffee!

Did you ever stop and wonder how some of our most colorful phrases made their way into our daily language? “Wake up and smell the coffee?” “Get with the program!” “Be there or be square”.  “Go with the flow”. “Hang in there!”

We use these phrases as a sort of idiosyncratic shortcut, a swath of color weaved through our daily language, a shortcut to express ourselves creatively.  Phrases pick up meaning in society seemingly by osmosis, overnight everyone is using the same phrase,  and we intuitively know what it means and in which context to say it.

“That and a dime will get you on the bus”  no longer has direct meaning since buses haven’t cost a dime for at least 40 years but we somehow understand the context.

Some Children are Concrete Processors

But what about our atypical kids? As parents of atypicals, you know that atypical kids, no matter what their specific diagnosis, will process slang expressions differently.  What might seem like a fun way to announce it’s time to clean up or take out the garbage, “heave ho, hop to it, guys!”  or, in school a teacher may call out: ‘class, it’s time to wrap it up!”  can overwhelm or confuse a child who processes information in a slower paced and more concrete manner.  Many expressions that we use can be very confusing for some children.

A concrete processor is a person who understands language in a black and white manner.  They respond best to direct and clear instructions.  “Do you see that torn paper on the floor? Please pick it up now.  Thank you for being helpful!”

Concrete processors are young processors.  We would never use sarcasm or slang to talk to a very young child but as a child grows, we expect him to pick up the lexicon. But many atypicals have difficulty with this particular aspect of social speech.

Unfortunately, most concrete processors, whether they have a diagnosis of Aspergers, autism, auditory processing disorder,  non-verbal learning disorder, ADHD or other types of learning or processing issues,  are often in situations where the language is not clear enough.  Even in schools where teachers are informed that a particular child has difficulty processing language may not understand what to do with that information.

Take Julia for example.  10 year old Julia came home from school confused and overwhelmed.  Diagnosed with an auditory processing disorder, her impatient teacher had evidently decided she was too slow that day.  Her teacher snapped out her favorite one liner, “wake up and smell the coffee!”.  Julia later said to her mom in tears, ‘what was she talking about? I wasn’t sleeping and I don’t drink coffee!

This is not an isolated incident.  I often emphasize to parents and teachers how to eliminate sarcasm and use direct language to help a child understand what they are asking.

Ron, a 9 year old child with Aspergers, was a child who needed some interventions.  I met with his teacher to explain  how to direct his young student into more pro-social behaviors.  I told the teacher, “be direct, give an example, practice with him”.

The next day, here is what the teacher advised Ron:

Be nice.”

The interesting thing is, Ron thought he was being nice! He couldn’t translate that not making eye contact, picking his nose and standing too close to other kids was considered ‘not nice’.   No one told him that! He couldn’t infer that “be nice” meant all of those things.

Even neurotypical children stumble over abstract language.  How often do we project expectations on our children using language that is vague or sarcastic? I have found that when that happens, chances are, we are not focusing on what specific behaviors we expect from our children, only that we are tired, impatient and would like a little break.  So we shout, “ give me a break!” or “move it or lose it!”  “chillax!” which seems perfectly reasonable from our perspective.

But I have seen enough bewildered children’s faces to know that what seems perfectly reasonable in adult-speak has no traction in their mini-me world.

Here are some real world translations from parent to child:

When you say, “Give me a break”  it really means:

I am exhausted. I have worked so hard all day taking care of you. I am about to lose it if I do not get a few minutes of peace and quiet!

What you could say:

“It would be so nice if you could play quietly for 5 minutes so I could take this phone call.   Here, I will set a timer.  Do you think you could be my best boy and do this for 5 minutes? What will you play with? Play dough? What a great idea! Thank you so much. I love you.

When the teacher snaps “Wake up and smell the coffee” it really means:

“I like things done quickly. In fact, I pride myself on how fast I can get my students to work. You, Julia, are slow. It frustrates me. I know you have a disorder but I am choosing to ignore that fact because you are messing up my program.

What the teacher could say:

“Hey Julia, it seems that you need a little extra time to get that desk cleaned off.  Would you like some help?”

When the principal says to the student in his office “just be nice” it really means:

I honestly have no clue how to instruct you to be more pro-social. I wish you would be nice and kids would like you better.  Don’t make strange noises.  Don’t stand too close and breathe on people.”

What he could say:

Hey Ron, it looks like you are looking for a friend today. Some days are like that. Would you like to help Ms. Smith in the library?

It’s helpful and fun to teach atypical kids how to use and understand slang expressions and they will enjoy them too, in the right context.  But do remember that  they require direct teaching.  So the next time you want to tell your child ‘Take a chill pill’ make sure they know what to do with that.  Because, they just might answer, “I don’t take pills and should I put it in the refrigerator?”

 

 

 

 

 

 

The Waiting Room Mom

If they only knew
Thoughts from  Waiting Room Mom

So here I am again in yet another doctor’s waiting room.  It’s windowless, with worn carpet and old crinkled magazines from 2012.   It feels like I’ve been living in waiting rooms like this one for years now, ever since we decided that something was wrong with Billy and needed to find out what it was.  

(DENIAL: )

 The doctor has been working with my child for the last 40 minutes, ‘testing’ him, they call it. My husband says that nothing is wrong with him and that I am wasting my time. Maybe he is right? I am getting antsy. I wonder if my child is doing okay, if they’re kind,  if they are not embarrassing him, if they remember to give him a snack because we  watch his blood sugar. I wonder if anything he says reflects badly on me as a parent, are they judging me?

(ANGER:)   

          I remember, with a wince, how I yelled at Billy last night before going to bed, but only because it had been such a long stressful day and instead of getting quieter, Billy was revving  up this engine becoming increasingly more manic and I knew how badly he needed his sleep before meeting the doctor today. I know we get angry with him so often but only because it’s so frustrating!  I hope the doctor won’t draw conclusions based on how Billy looks today, he is more tired than usual, maybe he is getting sick.  

(DEPRESSION:)

            Wow, it’s been such a stressful winter already! I’m so glad vacation is over, Billy couldn’t handle the lack of structure and our house was a wreck. The stress of finding activities that Billy could cope with (not too much overstimulation, maybe some physical activity, keep him involved, forget about being invited over for a play date, that wasn’t gonna happen, keep him off of video games for at least an hour or two a day, whining, tantrums all from being bored and feeling shut in) and now back to the daily grind of school in a overcrowded class with a teacher that I know hates my kid even though she won’t admit it. Evenings are the worst because I have to micromanage everything he does, when he lets me. … Homework is a nightmare for both of us; why can’t he put together one sentence in under an hour or bribing, cajoling and enduring his sobbing. The sobbing is the worst. Because I know how much he is suffering from whatever he has, lord knows what it is but that’s what we are here to find out. I hope, whatever it is, they don’t blame me.   I am already so depressed, I couldn’t handle more blame. 

(BARGAINING: )

Or maybe it is my fault, I really try but maybe I wasn’t careful enough when I was pregnant. Or maybe I went back to work too soon. I know I could have done better. Ok I will try. From now on, I will be the perfect mother for Billy. Maybe I will try that new diet for Billy that everyone is talking about.  Or maybe I will try that new Neuronic program in the news.  Please Lord,  let him be ok.

Sound familiar? The stress, the waiting room, the unknowing, the self blame? Welcome to the mind of a parent with atypical children. “Atypical” could include  a child with any type of visible or invisible disability. From a physical handicap to an invisible learning disability, autism or ADHD. Or sometimes a child can be quirky, difficult, different or sickly without any specific diagnosis. That might be even harder. To be a parent with a child with a difference means that you have a difference too.  Denial, anger, depression, bargaining, these are all normal parental reactions to working through your feelings as you parent a special needs child.  You are not alone.  You are a soldier, a unsung hero, and a leader to your family.  Please remember to be kind to yourself.  And…..no one is judging you, at least no one who understands.

What To Do When You’re At the End of Your Rope

by Rita Eichenstein, Ph.D. Reprinted from NY Metro Magazine November 21, 2013

As parents, we all have meltdowns now and then. Dr. Rita Eichenstein suggests key ways to deal with stress and frustration that will help you avoid the “end of the rope” and help you and your family feel happier.

5857078_s   Parents of kids with special needs don’t often think about how to take care of themselves. Instead, they’re constantly planning: If I can just get my kid bathed, fed, and in bed, I’ll be okay…. If I can just get through the parent-teacher meeting…. If I can just get my kid to the tutor… This single-minded focus on their child’s needs is understandable, but they don’t take into account how the stress wears on them. Then suddenly they’re shouting at their spouse, yanking their howling child by the arm, or sitting on the bathroom floor weeping. They are at the end of their rope, and it is a sad and scary place to be.

The best way to deal with being at the end of your rope is not to get there in the first place—more on that later. For now, here are two strategies that will help you calm down and refocuswhen you feel yourself nearing the edge.

1. Call for backup. They say it takes a village to raise a child. With a child who has special needs, it takes an army. Have a code word you can use with your partner that automatically buys you 15 minutes of alone time to cool down. If you’re a single parent, have a close neighbor or two agree to take your child for 15 minutes. Everyone needs a backup buddy—if you don’t have one, now is the time to compile your designated buddy list.

2. Use the S.T.O.P. technique. Elisha Goldstein, Ph.D., author of The Now Effect, popularized this technique of mindful awareness. I’ve found that it helps overwrought parents pause their spiraling behavior and reset it.

Stop what you are doing or about to do, and just take a moment to breathe and reflect.

Take a deep breath. Breathe in and out; use your breath as an anchor and become mindful of trying to slow it all down.

Observe your body, emotions, and thoughts. Scan your body and notice any sensations. Don’t judge them. Just notice them. Next, how are you feeling emotionally? Frustrated? Irritated? Let it be okay.

Proceed. Ask yourself what is the most important thing to pay attention to right now. Mindfully proceed with a prioritized and calm action.

 How to Avoid the End of the Rope

All parents occasionally lose control of their emotions—that’s normal. The goal, then, is to limit the number of times it happens. That’s tricky, because the very things that make a person resistant to meltdowns are scarce in the lives of parents: nutritious meals, exercise, and enough sleep. Parents tend to see these as luxuries from a bygone era, like those lovely Sunday mornings with the newspaper. Not so—healthy food, exercise, and sleep are absolute necessities. They are the fuel that enables you to be a tolerant and loving parent. Reaching the end of your rope is a psychological reaction to physiological stress. To avoid it, you must give your body what it needs to function better.

Even if your days of working out at the gym are on hold and fine restaurant meals are a distant memory, there are changes you can make that will instantly improve your mood and resilience.

Eat a high-protein breakfast. No sugar-packed smoothies or coffee and a granola bar. The old standard still works best: eggs, whole-wheat toast, fruit such as apple or banana, and bacon or sausage if you’re so inclined.See 4 other quick and balanced breakfast ideas

Notice how caffeine affects you. I’m not telling you to give up coffee, but do notice how it makes you feel. If you’re too caffeinated, it can jettison all your good intentions and push you to a massive emotional overreaction.

Love the body you’re in, but keep it moving. You probably do a good deal of walking every day. You can walk in a tense, hunched-up way, thinking about what you need to do next, or you can be in the moment—swing your arms and breathe in the air, and use it to get in a few moments of exhilarating movement.

See a sleep specialist if your child’s sleep problems are keeping you awake. Specialists can provide personalized plans for infants or even older children.

If your own insomnia is ruining your nights, turn off the screens (computer, cell, TV) an hour before bedtime. Cuddle with your kid or your partner instead. Physical touch (it doesn’t have to be sex) releases the feel-good chemical oxytocin, which will relax you.

Don’t hate yourself for melting down now and then. We’ve all been there! But if you can change the way you deal with your meltdowns and fortify yourself against them, everyone in your family will be happier for it—especially you.

 

When to Ask For Help

20049107_sTo be a parent is to be the ultimate go-to person for your child. This includes activities such as bandaging hurt fingers and hurt feelings, explaining to your child the ways of the world, preparing him or her for the first day of school.  These are the types of skills we learn on the job as we grow on our way to being the best parent for our children.

But what happens when you have no answers? What happens when your child is either so confounding or so puzzling or so unexpected that you find yourself coming up empty in terms of your understanding, coping skills or knowing what to do?

It may feel like a little bit of failure to have to ask for outside help.  After all, you are the ultimate go-to person, right? Why does your neighbor seem to have it all together but you are strung out each and every day? Asking for outside help may actually feel a little shaming, as if you are coming up short on your parenting quotient (PQ?).   The truth is, asking for help is empowering.  Raising children requires a village but atypical children require an army.  And you are just the perfect person to be the army commander.  So it may be time to start recruiting candidates to join forces with you!

START THE SEARCH

Who are the experts in your community? In previous times, young parents would turn to their parents, friends, or relatives for support and advice. But due to the increasing amount of atypical conditions that children are having these days, your typical go-to resources may not be as helpful as you’d like.

ASK THE INTERNET

Increasingly parents are turning to the internet for immediate advice and guidance.
This is not usually the best idea although probably by now, all parents are googling for information all the time.  A few reasons the internet will neither enlighten or satisfy you:
1. Internet is like the Wild West, there are too many websites and too much conflicting information, chances are you might loose much sleep over someone’s post about their child that actually has nothing to do with what you are going through.  Even trustworthy sites do not reflect their understanding of YOUR child.
2.  Your understanding of what your child is going through can be colored by what you read. Your ideas about what your child is going through might not fully fit a professional description.  For example, many children can look like they have ADD or ADHD because others issues are impacting them.
3. Commercial aspects of many websites can be long on description and glossy pictures but short on scientific evidence and factual results. Buyer beware! Do not fall for the one treatment cures all approach to your child.  To date, there is no one treatment that legitimately can treat autism, learning disabilities, ADHD, processing disorders, sensory disorders and mood disorders.

START WITH THE FACTS AND ASK THE QUESTIONS
What do you want? Are you looking for information, treatment or parent support? Maybe you are not sure? One thing is for sure, when a parent asks for help, chances are they have worn out all their avenues of coping and their children are continuing to be mysteries.

DR RITA RECOMMENDS:

Start with your pediatrician and ask for a referral to a specialist that will see your child, there are quite a lot of specialists to choose from.  Be sure to choose a specialist that works with your child’s age group.  For example, very young children (under 5) should be seen by specialists with experience with this group.  Many regional centers will see children from infancy but parents may not be satisfied with the outcome of regional testing.  Make sure you are satisfied with the information that you receive.  If not, keep looking.  It is important that you receive the following:

1. Clarity: even if your child doesn’t meet criteria for a diagnosis, you do want more information about how your child ticks and learn more about his or her condition or issues.

2. Recommendations: you want solid advice on how to work with the issues that you identified when you first came to this specialist (the specialist did ask you to identify specific issues, right? )

3. Resources:  your specialists should either be providing you with resources or leading you to resources in your community that will take you to the next step on your parenting journey with your atypical child.

Best of luck in reaching out and asking for help! You will become a better parent for doing so.