NO BOUNDARIES

Autism Spectrum Disorder knows no boundaries. ASD has no preference for any particular ethnicity. There are no cultural boundaries, religious exemptions or geographical disparities. Economics have no impact on ASD, it affects the rich and the poor.
Swine flu was/is considered a possible pandemic; a worldwide epidemic of infectious disease. What would autism be considered? Obviously, autism is not infectious but it is a worldwide epidemic disability.

The term epidemic doesn't seem to fit this problem. Epidemic sounds too much like an "Outbreak"; an epidemic of teenage pregnancies, an epidemic of car thefts in a given neighborhood. The term epidemic infers that there is an end or solution to this problem on the horizon. This hardly describes a disability that could alter the course of our civilization. Hyperbole? Not, when autism rates are now at 1 in every 88 child births and rising.

A Father's Worst Nightmare

It's been over a year now and I am finally ready to write about it...The call came from Danielle's teacher at the end of the school day in the Fall of 2011. It was the call that I'd hoped would never come. The teacher called to inform me that there had been an "incident of inappropriate touching" at school.
  When I first started this blog, I wrote about my concerns, my fears of raising a daughter with developmental disabilities. How can I protect my daughter from predators in our community? How could a beautiful, warm little girl with a trusting personality and limited verbal skills survive in such a dangerous world? I'm sure these are questions that every loving, responsible father of a child with a cognitive disability ask himself, over and over again. Now, I am faced with the cold reality of my child's victimization.
  Upon hearing the news, I felt my heart sink deep into my chest. Danielle's teacher tried to put my fears at ease by telling me that the "incident" was witnessed by several people and immediately stopped before it went any further. This did nothing to ease my concerns or fears. My first question, obviously, was how was Danielle? Her teacher said that Danielle was OK but may have been more upset by the reaction of the adults who witnessed the "incident". (I called it the "incident" because it is easier than calling it an "assault".) After school was out, Danielle was placed on the bus and sent home as per usual. Of course, I was on the edge of my seat; I could hardly sit still waiting for Danielle's bus to arrive. I wanted to see her, to see how she was, if she was upset, to see if she was scared....I needed to see her.
  When her school bus arrived, I ran outside to meet her. Danielle was unusually quiet but physically fine. I could tell that something upset her but when I asked her how her day went, I got the usual smile followed by silence. This is probably one of the worst aspects of this disability. I know that something terrible happened to her. I know she knows what happened to her was wrong but she couldn't tell me what happened, how it happened, why it happened or what steps were taken immediately after the incident. I was devastated for her, I felt helpless as a father and protector. As bad as things were, they were about to get much worse. Over the next several months, events would unfold that would drive home the harsh reality of how dangerous our world can be.
 After getting Danielle from the school bus and spending a few minutes with her, I had to get more information about what exactly happened to her. I called her teacher and we talked at length about what had happened to Danielle at school that day. She told me that Danielle was preparing to leave for the day and as she was bending over to place something in her backpack, another student grabbed her from behind, began "thrusting his hips" and attempted to reach down her pants. Fortunately, this all happened in the classroom in full view of the teacher, several teachers aides and the entire classroom. I say fortunately because this could have happened on the playground or in a restroom or anyplace out of view from the adults on campus. What if there was no one around to stop this from escalating further? Danielle is the only girl in her class. We're accustom to this because 3 of 4 children with autism are boys. I don't know why this is true but it is a fact and a fact that we deal with each school year. Until now this hadn't been an issue, though I feared one day it might be. This is one of those times I hate being right.
  I made an appointment for me and Kathy to see the teacher and principal the next day. When we arrived for the meeting, they were very apologetic and I felt like they were sensitive to my concerns however...I also recognized that there was a concerted effort to "protect" the child who assaulted Danielle. I really wanted to know which kid was involved and it was clear the school officials were prepared to protect the identity of this child at all cost. I felt I needed to know who this kid was. I see Danielle interacting with her classmates all the time. If there is one student that requires watching or has issues that could prove a threat to Danielle's safety, I should have a right to know about it, shouldn't I? Danielle was assaulted (there's that word) by this kid in front of several witnesses yet Danielle's parents aren't allowed to know the identity of her attacker? The entire situation was surreal. Danielle's class has 7 or 8 kids total. One kid is suspended until the principal and teacher can have a conference with the mother. After taking Danielle to school for a couple of days and seeing the same student conspicuously absent, it was fairly easy to determine who the perpetrator was.
  When we realized who the kid was, we weren't exactly surprised. What was surprising is the way the situation was handled by the school district. For one thing, the documentation of the incident was almost non-existent. I would find out a year later that when Danielle entered middle school, the staff and administrators were unaware of the past problems with her classmate because there was nothing in the files. To make matters worse, Danielle was seated right next to this kid in class the following year and had to endure constant teasing and harassment. It was until the third week of school that we realized they were seated directly next to each other. (Kathy about blew a gasket when she found out!)
  Secondly, there seemed to be no effort to look into this child's behavior beyond the "superficial". It is not natural for an eleven or twelve year old kid to grab another kid, thrust his hips back and forth and attempt to reach down their pants. This isn't a normal part of puberty, this is a learned behavior. I'm no school psychologist but I have been an 11 year old boy before. When I was eleven, I hung around lots of other eleven year old boys and I can't ever remember me or any of the boys I new having the uncontrollable urge to grab a girl and force my hand down her pants. This is a learned behavior and the burning question is where did he learn it?
  Several months went by and Danielle seemed to be fine. We had taken steps to limit Danielle's contact with the other kid. He was moved to the opposite side of the room from Danielle and their interaction was closely monitored. Still, I was uneasy about the situation; I was on edge and would be for the entire remainder of the school year. It was March of 2012 when Sierra Lamar went missing. Sierra was a student at Ann Sobrato High School in Morgan Hill; the same school that Taylor attends. One day, Sierra left her home to catch the school bus on the corner. The same school bus that we often pass as I take Taylor to school in the morning. Sierra never got on the bus that day and she never arrived at school. In the weeks and months that followed, we'd often pass search and rescue personnel on our way to school; Sheriffs Deputies and community volunteers walking side by side through the fields, meadows and pastures searching for clues to Sierra's disappearance. I can't imagine what goes through a parent's mind when their child is missing. By all accounts, Sierra was a beautiful, bright, friendly and articulate young lady. In the end, Sierra was the victim of a predator in our community.
  As I look at this situation, I can't help but think about my Danielle. If Sierra Lamar can become a victim; if this teenager can be taken advantage of and murdered, how do I help Danielle understand the ways of the world? I don't know what the answers are but I do know that there is no time to waste. The world won't wait for me to figure it out.

Natural Learning Concepts

This is a great article and well worth sharing....

- By Jene Aviram

This article is property of and copyright © 2003-2008 Jene Aviram of Natural Learning Concepts.  Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site http://www.nlconcepts.com/

The beginning

Two children have a diagnosis of autism.  One is verbal.  The other is non-verbal.  Both have limited communication skills.  Both have inappropriate play skills.  Both are self directed.  One struggles with transitions while the other struggles with noise sensitivity.  One is more academic while the other is more social.  The children are different in nature but equally impaired by challenges of autism.

 

Five years later one child is in a mainstream setting with very little support.  He has some residual autistic traits which are mostly unnoticeable by the untrained eye.  He has in every sense of the word “recovered” from autism.  The other child is in a special education setting.  Although he was always verbal, maintaining a conversation is practically impossible.  He engages in a variety of self stimulatory behavior, has poor social skills and is impacted by autism in almost every area of his life.

 

What makes the difference?

While there is no accurate information about why some children “recover” and some don’t, there are certainly a lot of theories floating around.  Some say that early verbal skills are predictors of success.  Others say the bigger the sensory challenges, the stronger the autism.  Many believe there is no recovery from autism and that “recovered” cases are simply a misdiagnosis of autism in the first place.

 

What defines “success” or “recovery” from autism? 

Many typical people believe that love, marriage, kids and a good career equals success.  It’s important to note these are personal choices, not success.  There are many people with and without a diagnosis of autism that might choose these goals.  What we’re looking at is the ability to lead an independent life with meaningful relationships regardless of personal choices.  With this in mind, let’s take a look at how you can increase your child’s chance of “success” or “recovery” from autism.

 

1.    Help your child communicate

Learning to communicate is essential for leading an independent life.  Communicate is not the same as “verbal.”  It’s wonderful if your child can talk but if not, seek alternate ways to teach this skill.  Many are afraid to teach sign language as they fear their child will lose motivation to speak.  This is a total misconception.  More often than not, signing speeds up the talking process.  When children learn their needs can be met, the motivation to speak increases.  Once they discover the joy of sharing their interests, there is no turning back.  Enhance verbal skills by teaching appropriate language about movies, school and things they enjoy.  Teach children to enquire about others.  Conversation is a two way exchange about the same topic.  Sometimes children do better with conversation when they equate it to something visual.   Explain that it’s just like tennis.  I hit the ball and you hit it back, I hit the ball and you hit it back.  If I drop the ball (by going off topic) then you win a point.  

 

2.    Sensory challenges

It’s difficult to learn when sensory challenges impede the ability to focus.  People often mistake sensory issues for bad behavior.  Sounds such as a slight hum from electrical equipment might sound unbearably loud or feel painful to someone on the autism spectrum.  If children are unable to express how external factors are making them feel, the result is increased frustration which typically leads to outbursts or tantrums.  A few simple strategies from an experienced Occupational Therapist can make the world of difference.  Consistency brings results.  Encourage your child to practice the OT exercises regularly for maximum benefit.  Time helps too and as your child matures, he will find coping strategies and self regulation tools to cope with sensory overload.

 

3.    Different therapies

ABA therapy!  Verbal Behavior therapy!  RDI!  Son Rise!  Floor Time!  TEACCH!  GFCF Diet!  Enzymes!  Music Therapy!  OT!  PT!  Speech!  Social skills groups!  The list goes on and on.  When a child is diagnosed with autism, parents are in turmoil.  With so many therapies to choose from where do they start?  Which therapy will bring the best result?  What about costs?  It’s overwhelming and confusing for parents who want to make the best decision for their child.  Educate yourself as much as possible by attending seminars, reading books and connecting with parents and professionals.  Therapy is just like learning to swim.  It takes patience and persistence.  If you don’t see steady progress within a few months by all means alter the choice of therapy and/or teaching methods.  If you’re trying supplemental therapies such as vitamins and diet, your child probably won’t be able to express how these things are making him feel.   Always remember that you know your child best.  If something doesn’t seem right, it probably isn’t.  Despite common belief, you are not working against a clock.  You have time to explore various options that you think will help your child learn and grow.  Be kind to yourself.  You are making the best decision you can possibly make with the information and resources at hand. 

 

4.    Emotional Intelligence

Emotional intelligence (EQ) is one of the biggest predictors of success.  You’ve heard the saying “IQ gets you through school but EQ gets you through life.”  The good news is that EQ can easily be learned.  So what exactly is EQ?  It’s the ability to understand your own emotions and those of others, and to act appropriately using these emotions.  It encompasses skills like self control, empathy and cooperation.  There are many ways you can increase EQ.  Teach children how to recognize and manage their emotions such as anger and frustration.  Teach them to express emotions such as joy and appreciation. Help them identify the emotions of others and to act appropriately when others are angry, happy or sad.  By increasing EQ, your child will develop interpersonal skills and develop the confidence for interacting on a personal and at the group level.

 

5.    Self help skills   

Children on the autism spectrum often have poor fine motor skills.  This makes some of the most basic self help skills difficult for children to master.  The desire to impress others is often diminished in a spectrum child and it’s unlikely they will dress independently or button their coat in anticipation of the praise they will receive.  Self help skills are essential for independence.    While it takes time to teach and master these skills, the value is immense.  Your child is not dressing independently if you have to prompt him through it or lay out his clothes first.  Similarly, if you have to put toothpaste on the toothbrush and prepare a rinse cup, your child is only semi-independently brushing his teeth.  Use visual schedules and teach in simple steps until your child is able to complete tasks without any intervention.  An added benefit is that your child will learn responsibility and accountability which do wonders for self esteem. 

6.    There is no time limit

It has been suggested that if children don’t reach certain milestones by the time they are 5 or 10 or even 12, they will never “recover” from autism.  Talking to actual people on the autism spectrum, this couldn’t be further from the truth.  Many adults with autism were essentially non-verbal until they were 10 years old or beyond.  Today they lead productive lives and maintain meaningful relationships.  You never know when that something will “click” or if it will be a gradual and steady change.  For many adults on the spectrum, “recovery” only came about in adulthood.  We do know that people are far more likely to succeed when they have supportive people in their life.   Keep your faith and stand by your child.  You can’t afford to give up.  If you do, your child will feel it and act accordingly.  Your job is to delight in your child’s unique ways and instill the belief that he can achieve anything he sets out to do.  Whatever that is, you’ll be right there supporting him on his journey.

 

In conclusion

Your child is not on the spectrum because you neglected to do forty hours a week of ABA or because you never tried the GFCF diet.  Your child’s current level of functioning does NOT determine his future level of functioning.  It’s simply a guide to help you determine the next step towards a productive, happy life.  Forget about autism for a moment.  Like all kids, your child craves your love and acceptance.  Give it generously and your child will flourish and grow to be the best he can be.