The Individuality of Asperger Syndrome

Posted on November 11, 2010

Photo taken by Kami Averett - artographybykami.weebly.com

On March 27, health 2007 our beautiful baby boy was born.  He was perfect in every way. Ten little toes, ten little fingers, beautiful bright blue eyes just like his older siblings. Mason was a sweet little boy, maybe a tad bit fussier then a mother or father would hope for, but overall a delight to our family. That first year of life was so fun, he nailed every expected milestone at or ahead of the doctor’s expectations.

One of the first things that tipped us off that something was not quite right was Mason’s second Christmas. Weeks and months of preparation and planning had gone into the event to make sure that it was all going to be just right. The perfect toys had been carefully selected and wrapped in brightly colored wrapping paper. The family awoke bright and early and rushed in to see what Santa had left for them. Mason’s six and four year old siblings anxiously reached into their stockings to see what treasures they might find. Mason screamed with terror when we tried to show him that there were treasures inside the stocking. When it was time to unwrap presents he recoiled even further screaming, “no, no, no.”  After 20 minutes of anguish on both of our parts Mason went upstairs and watched a movie on the TV. Christmas was a bust. Three months later his birthday was not much better. As the summer months came and went we had to admit that something wasn’t right with our little boy. In October 2009, when Mason was two-and-a-half years old we called the school district to have him assessed for early interventions.

Our concerns were his greatly delayed communication skills. He was excellent at labeling things and knew all of his letters, numbers, shapes, and colors (in both English and Spanish). He could not, however, put together even a simple sentence. He would not identify himself in pictures or in the mirror, he had no interest in playing with other kids his age.

The district came out and performed basic assessments on him. It was easy to see that he would qualify for some interventions; his receptive language skills weren’t even measurable. We had a speech-language pathologist (SLP), Megan, come to the house twice a month for the next six months. We loved Megan, she seemed to be able to come up with ways to engage Mason that we had never thought to try. After some hard work and persistence we had him putting two words together, “more please,” “more milk,” and so on. He also attended an Early Intervention program once a week. At first, he really struggled and fought the teachers non-stop. Over Christmas break, his language increased dramatically, and two-word phrases became the norm. He became the model student in his classroom, but it was easy to see that he had accepted and embraced the set routine that school offered more than he had really learned to love the people and the interactions. We were excited to see progress, but also began to realize that although his progress was good he was still far behind his peers. We began to ask his teachers, the SLP, all of the experts that would listen, what their opinion was on Mason. They all said he is making good progress even though he does show some red flags. They all assured us that we shouldn’t worry about the red flags.

The question tormented us, “What do they mean by red flags?” Red flags for what? We had been told that our little boy was developmentally delayed. In our minds delay meant he is slow but will catch up. We started to ask when? We often felt like everyone knew a secret, but they weren’t willing to let us in on it.

We set out on a quest to find out what was meant by red flags. We spent the evenings googling everything we knew about our son. We couldn’t remember when we first heard the word “autism” associated with Mason. No one would dare tell us that they suspected it of him. We didn’t really know anything about autism.We had not known anyone with it growing up. We did know of a few distant acquaintances that had children with autism. We didn’t really even know what it was. It was just a word that labeled a childhood disability, but it meant nothing to us. Google opened our eyes to a world that we were afraid to enter, but then realized that we were already in the middle of it.

We began pestering teachers and experts with the question: “Does he have it?” The answer was always the same, “I’m not qualified to make a diagnosis, but he does show some red flags.” Ah-ha! We knew what they were referring to with the red flags. We could finally get started figuring out what to do to help him. All we ever wanted was to make sure that we were doing everything possible to help him Why weren’t people making this easy for us? Couldn’t they see the exhaustion and frustration etched on our faces?  We were tired of guessing, pleading, and prodding for information when others we thought knew the answers weren’t telling us what they knew.

Meanwhile, Mason had turned three and had moved from Early Intervention into the district’s preschool program. Twice a week a big bus pulled up in front of our house. We loaded him onto the bus kicking and screaming, and watched as the driver drove away. Two hours later the bus returned him to our home with a pre-printed sheet in his backpack that described what he had learned at school that day, what his favorite part was, and what they had eaten for snacks. The one-word answers that were provided to these questions did little to help us know what kind of progress our child was making. We didn’t know if he had screamed, cried, participated, hid in the corner, made a friend, or if he was making any improvements at all. It was very frustrating and we really began to worry. At least when he had been in the Early Intervention program we had dropped him off and picked him up each day and could get a detailed report from the teacher.  We really missed having the SLP come to our home and work with us. She helped us understand how to help Mason, and to really appreciate the progress we were making. We now felt lost.

More research, more googling. We knew we needed more help, but what? We then got brave and began to seek out parents like us. What had they done that helped, how was their child progressing, what other resources had they used, what had worked, what didn’t, is he ever going to be potty trained?  These were the questions that now consumed our conversations. We spent the summer seeking out answers and help everywhere that we could. It was really frustrating, there were so many options, yet, it sometimes seemed like there weren’t nearly enough. We felt like we had become an expert on autism overnight, and yet we knew nothing about it. We became trapped in the paradox that is the life of a parent of a child with special needs.

In August 2010, we took our son to the Center for Children with Special Health Care Needs. We finally were able to meet with someone who was qualified to give us a diagnosis. Mason was diagnosed with Asperger’s Syndrome. The doctor’s diagnosis and feedback brought great relief. We finally had a name for what had happened last three years of our lives. We had some idea of what to expect for our future, and we had a list of resources that we could contact to try to find more help. We had a label that when we shared it with others, they would get that “ah-ha” look and have a bit more understanding of why our child was acting the way he was.

The next week we had a Parent Teacher Conference and discussed our new-found information and concerns with Mason’s education team. We took a notebook and placed it in his backpack and asked the teacher to please write us a little note each day letting us know how things had gone. We asked questions about what services he was receiving and whether or not they were adequate to meet his needs. These were all things that we hadn’t even known to ask at his original IEP meeting six months earlier. We made suggestions, sought to more fully understand the how and why of things, and became an advocate for our son.

Mason on a Boat

The changes following this meeting were substantial. Our communication with the teacher increased, and we felt so much more in the loop.  The teacher knew that we were fully vested in our son, and that we expected to see regular progress reports. She and his whole team have done a great job working with Mason, and keeping in regular contact with us so that we don’t feel quite as helpless. In the midst of budget cuts and shortfalls, we know these special educators are stretched thin. We feel deep gratitude for their efforts and for their patience with our son.

Johnson Family - Oct. 2010 - Photo taken by Kami Averett - artographybykami.weebly.com

This month marks one year since we started our journey into the special education system. It has been a roller coaster ride. We have celebrated with our son the little victories that most parents wouldn’t even take note of. We have mourned the loss of the little boy that we thought we had. We have discovered and embraced the special characteristics and strengths of the boy that we do have. We appreciate and applaud the educators who dedicate their lives to serving these special children. It is certainly a job that is not rewarded by money and prestige, but to families like ours it means the world.

Authors: Rachel Johnson, South Jordan Utah resident & Tom Johnson, Technology Specialist, Utah Personnel Development Center (UPDC)

On March 27, buy 2007 our beautiful baby boy was born.  He was perfect in every way.  Ten little toes, page ten little fingers, link beautiful bright blue eyes just like his older siblings.  Mason was a sweet little boy, maybe a tad bit fussier then a mother or father would hope for, but overall a delight to our family.  That first year of life was so fun, he nailed every expected milestone at or ahead of the Dr’s expectations.

One of the first things that tipped us off that something was not quite right was Mason’s 2nd Christmas.  Weeks and months of preparation and planning had gone into the event to make sure that it was all going to be just right.  The perfect toys had been carefully selected and wrapped in brightly colored wrapping paper.  The family awoke bright and early and rushed in to see what Santa had left for them.  Mason’s 6 and 4 year old siblings anxiously reached into their stockings to see what treasures they might find.  Mason screamed with terror when we tried to show him that their was treasures inside the stocking.  When it was time to unwrap presents he recoiled even further screaming, “no, no, no”.  After 20 minutes of anguish on both of our parts Mason went upstairs and watched a movie on the TV.  Christmas was a bust.  Three months later his birthday was not much better.  As the summer months came and went I had to admit that something wasn’t right with my little boy.  In October 2009, when Mason was two and a half years old we called the school district to have him assessed for early interventions.

Our concerns were his greatly delayed communication skills.  He was excellent at labeling things and knew all of his letters, numbers, shapes, and colors (in both English and Spanish).  He could not however put together even a simple sentence.  He would not identify himself in pictures or in the mirror, he had no interest in playing with other kids his age.

The district came out and performed basic assessments on him, it was quick to see that he would qualify for some interventions, his receptive language skills weren’t even measurable.  We had a SLP come to the house twice a month for the next six months.  We loved Megan, she seemed to be able to come up with ways to engage Mason that we had never thought to try.  After some hard work and persistence we had him putting two words together, “more please”, “more milk”, etc.  He also attended an Early Interventions preschool once a week.  At first, he really struggled and fought the teachers non-stop.  Over Christmas break, his language increased dramatically, and two word phrases became almost the norm.  He became the model student in his classroom, but it was easy to see that he had accepted and embraced the set routine that school offered more then he had really learned to love the people and the interactions.  I was excited to see progress, but also began to realize that although his progress was great he was still far behind his peers.  I began to ask his teachers, the SLP, all of the experts that I could get to listen what their opinion was on Mason.  They all said he is making good progress although he does show some red flags.  Then they all assured me that I shouldn’t worry about the red flags.

The question tormented me, “what do they mean by red flags?”  Red flags for what?  I had been told that my little boy was developmentally delayed, in my mind delay means that they are slow but will catch up.  I started to ask when.  I often felt like everyone knew a secret, but they weren’t willing to let me in on it.

I set out on a quest to find out what was meant by “red flags”.  I spent the evenings laying on my bed googling everything I knew about my son. I don’t remember when I first heard the word “autism” associated with Mason.  No one would dare tell me that they suspected it of him.  I didn’t really know anything about autism.  I had not known anyone with it growing up, I knew of a few distant acquaintances that had kids with autism, but I didn’t know the kids.  I didn’t really even know what it was, it was just a word that labeled a childhood disability, but it meant nothing to me.  Google opened my eyes to a world that I was afraid to enter, but then realized that I was already in the middle of it.

I then started pestering the teachers and experts with the question, “does he have it?”  The answer was always the same, “I’m not qualified to make a diagnoses,  but he does show some red flags.”  Ah-ha!  I knew what they were referring to with the red flags.  I could finally get started figuring out what to do to help him.  All I ever wanted was to make sure that I was doing everything possible to help him, why weren’t people making this easy for me?  Couldn’t they see the exhaustion and frustration etched on my face?  I was sick of guessing, pleading, and prodding for information when people that knew the answers were not telling me what they knew.

Meanwhile, Mason had turned 3 and had moved from Early Interventions into the district’s preschool program.  Twice a week a big bus pulled up in front of our house, I loaded him onto the bus kicking and screaming, and watched as he drove away.  Two hours later the bus returned him home to me with a pre-printed sheet in his backpack that said what they had learned at school today, what his favorite part was, and what they had eaten for snack.  The one word answers that were provided to these questions did little to help me know what kind of progress my child was making.  I didn’t know if he had screamed, cried, participated, hid in the corner, made a friend, or if he was making any improvements at all.  It was very frustrating and I really began to worry.  At least when he had been in the Early Interventions Preschool I had dropped him off and picked him up each day and could get a detailed report from the teacher.  Now I was getting no feedback at all.  I also really missed having the SLP come to my home and work with us.  She helped me know how to help Mason, and to really appreciate the progress we were making.  I now felt lost.

More research, more googling, I knew I needed more help, but what?  I then got brave and began to seek out parents like me.  What had they done that helped, how was their child progressing, what other resources had they used, what had worked, what didn’t, is he ever going to be potty trained?  These were the questions that now consumed my almost every conversation.  I spent the summer seeking out answers and help everywhere that I could.  It was really frustrating, there were so many options, yet, it sometimes seemed like there weren’t nearly enough.  I felt like had become an expert on autism overnight, and yet I knew nothing about it.  I became trapped in the paradox that is the life of a parent of a child with special needs.

In August 2010, we took Mason to the Center for Children with Special Health Care Needs.  I finally was able to meet with someone who was qualified to give me a diagnosis.  Mason was diagnosed with Asperger’s Syndrome.  The Dr’s diagnosis and feedback brought me great relief, I finally had a name for what had happened to the last three years of my life.  I had some small idea of what to expect for my future, and I had a list of resources that I could contact to try to find more help.  I had a label that when I gave it to people, many of them would get that ah-ha look and have a bit more understanding of why my child was acting the way he was.

The next week we had a Parent Teacher Conference and discussed our newfound information and concerns with Mason’s education team.  I took a notebook and placed it in his backpack and asked the teacher to please write me a little note each day letting me know how things had gone.  I asked questions about what services he was receiving, and whether or not they were adequate to meet his needs.  These were all things that I hadn’t even known to ask at his original IEP meeting six months earlier.  Instead of blindly signing off on IEP goals that had been written before I had even shown up, I made suggestions, sought to more fully understand the how and why of things, and became an advocate for my son.

Mason on a Boat

The changes following this meeting were substantial.  Our communication with the teacher increased, and I felt so much more in the loop.  The teacher knew that I was fully vested in my son, and that I expected to see regular progress reports.  She and his whole team have done a great job working with Mason, and keeping in regular contact with me so that I do not feel quite as helpless.  In the midst of budget cuts and shortfalls, I know that these special educators are stretched thin, and I feel deep gratitude for the efforts and the patience that they give to my son.

Johnson Family - Oct. 2010

This month marks one year since we started our journey into the special education system.  It has been a roller coaster ride.   We have celebrated with our son over little victories, that most parents wouldn’t even take note of.  I have mourned the loss of the little boy that I thought I had.  I have discovered and embraced the special characteristics and strengths of the boy that I do have.  We appreciate and applaud the educators who dedicate their lives to these special children, it is certainly a job that is not rewarded by money and prestige, but to families like mine it means the world.

Author: Rachel Johnson, South Jordan Utah Resident & Tom Johnson, Technology Specialist, Utah Personnel Development Center

TJ

“A student with Asperger” are words that can bring fear into the heart of the most seasoned teacher. Why are they in my class? Where did they all come from? What am I to do? These questions have very complex answers that often do not feel like answers at all and when all is said and done the student is still yours to deal with.

I began my career as a school psychologist in Detroit and then moved on to what was then the country’s largest school for students with autism, sildenafil Burger School in Garden City, buy Michigan. That is where I received my first exposure to Asperger and where I learned what I know about these children.

Asperger is a form of autism. The diagnostic difference is that children with Asperger don’t have speech delays. In fact, prostate they can sometimes sound like little professors. They are also usually of average to above average intelligence (although there might be areas in which they are not typical and other areas in which they are above average). They can learn easily, especially when it is an area of interest. They often like to learn facts about their favorite subjects and share those facts with everyone. They just as often do not want to spend their time on subjects that do not interest them. They are socially awkward or uninterested or shunned or all of the above. Sometimes this bothers them and sometimes they are quite content with being alone. Sometimes they have meltdowns or irrational fears (I knew one student who was afraid of lint and another who was afraid of the color yellow). Sometimes their biggest concern is for changes in routine. They often seem completely self-involved and will not work for praise or the usual sorts of social rewards that other children do.

If it seems like the word “sometimes” has made the whole subject a little vague and uncertain, it is. The reason these things are “sometimes” is that all children with Asperger/Autism are as individual as any other student. They all share common autism characteristics but for one child it might be the narrow, restricted range of interest that is at the forefront and for another student it is an unexpected change in routine that throws them into a tail spin. For yet another it is sensory input such as loud noises or the close proximity of other students. And for all students they are better able to cope on some days than on others. For that reason it is imperative that you figure out your student’s “flavor” of autism.

If your student has problems because of changes in routine then a schedule of activities is often necessary for them. Some students need a daily reminder of activities while others will be okay with a weekly reminder. These schedules can be attached with Velcro to their desks and can be carried with them if needed. Also, there should be room in that schedule for breaks (listed, as well). These students don’t do well with not knowing what is next so that even if there is a change in routine it will help them a great deal if you can point out that math is still next or reading. Also, some time should be devoted to teaching them how to behave and what to do if there is a change in routine. Expectations for these students should be spelled out in a systematic way. For example, you might list:

1.      Remember we talked about possible changes in routine and this is one of them.

2.     We will go back to the regular schedule as soon as this assembly/fire drill/speaker is over.

3.     I will be okay with the change and will cooperate.

4.     I will ask for help in dealing with things if I need it.

5.     I will be allowed to carry a favorite object or sit by someone that is calming for me.

6.     I will be allowed a break with a favorite activity when this is over.

Strategies for the student whose Asperger is more about an obsessive interest are somewhat less structured but must be just as consistent. These students often have a surprising ability to shift a conversation back to their interest area within one or two conversational exchanges, regardless of the subject. Again, the direct approach is really the only approach with these students. They do not pick up on or often care about subtle suggestions about behavior. You must have a conversation with them about expectations and then remind them about those expectations when they slip up. However, you must also allow them some time when it is okay to talk about their subject. This can take the form of a reward. For example, I knew one student whose special interest was Pokemon. A reward for not obsessing and talking about Pokemon and maybe not doing work during specific lesson times would be to allow time at the end of the day when they have your undivided interest for five minutes (set a timer, you will need it) where they can tell you whatever they want. You can also allow them one statement about Pokemon before answering a question about math or language arts. You will not eradicate that interest but you can find ways to make it work for students instead of against them.

Perhaps the most controversial and difficult behavioral element of Autism/Asperger is their response to sensory stimuli. This was the most difficult for me to come to terms with as a psychologist. We were taught that behavior could be addressed by a strictly behavior modification approach with rewards and consequences. This is still basically true. However, the sensory issues associated with autism are often so overwhelming for the student that there is no other reward or consequence that can compete with those needs. Sensory issues are also so varied and variable that they often seem incomprehensible. All students with autism will have some sensory problems, on some days. What can be helpful is a thorough assessment of what these issues might be for that student. This assessment can be done by your occupational therapist or school psychologist and will let you know whether your student is trying to avoid stimuli or is seeking it and whether they are avoiding in one sensory system or seeking it in another. From that information the occupational therapist should be able to offer up a “sensory diet” of strategies to be used to help regulate that student’s sensory systems before behaviors occur. For example, often the playground is a sensory overload of stimuli. Therefore, after recess (or recess can be taken in a quiet area for that student) he might return to the classroom and have a transitional time where he can deliver a folder to the office, take a walk around the school, walk to the end of the hall or read a book for five minutes before being expected to sit down to desk work. As you address those self-regulatory issues for the student, behaviors should decrease.

Whatever your student’s flavor of autism it will require diligence on your part, a real knowledge of how your student works and direct instruction in areas that are usually learned incidentally by your other students. In the process, however, you may find that these strategies benefit all of your students and make for a much better learning experience.

Author: Juanita Dotson, Sp.A., School Psychologist, Washington County School District