There is a quite a bit of information on the internet about Asperger’s Syndrome (AS), what it is, its causes, and how to treat it.  Dr. Tony Atwood and O.A.S.I.S. have very complete sites with lots of information and help.  So, we decided not redo what has already been done and focus this page on our experiences.  Since AS is very complex and shows itself in many different ways, what we see in our child are not the only symptoms.

Duncan
The Early Years
When Duncan was two, we started to notice he was just a little different than other children.  His IQ seemed to be advance, but his social skills were lacking.  For example, he could take 25 piece puzzles and put them together based on the shapes of the pieces.  He knew his alphabet, numbers, many of the US states, and had a knack for memorizing the order of things.  However, he would not hug people.  He would usually allow others to hug him, but he did not return their hugs.  He was always on the move--constantly, constantly moving.  He would do seemingly ‘dumb’ things.  For example, he would dump cup full after cup full of water on the floor.  It did not matter how many times we disciplined him for this behavior, he kept doing it.  When he was three I was attending a gym regularly.  One day, after working out, I went to pick him up at the gym’s daycare and the workers had no idea where he was.  After about five minutes, they found him in the bathroom dumping water on the floor—about ¼ inch deep.  At age five, I still needed to hold his hand in parking lots to keep him from running in front of cars.  I remember being completely amazed that this child could remember large portions of movies, was reading well, solving fairly advanced addition problems in his head, but was unable to get the concept of looking both ways before crossing the street.  In the mix of all this, he was not talking.  He said very few things and when he did it was not with a normal speech pattern.  It was not a situation where he was unable to talk, he was choosing not to talk.  He did not want to express himself through speech (still a bit of a problem).  When he did decide to talk, it was often times off subject and pretty much a lecture about whatever he was interested in at the time (monologue).  He was also clumsy and uncoordinated, easily frustrated and got angry very quickly.

Researching the Problem
All along the way we were researching.  My initial thought was, we were bad parents, and trust me, many other people thought the same thing, but the more we worked with him, the more we realized there was something else going on.  We researched ADD and ADHD, but those disorders did not really fit him.  While he was extremely active, he also showed incredible focus on certain things.  He did not demonstrate some of the learning difficulties ADD and ADHD children often have either.  Since he had such a standoffish personality, we looked into Autism as well.  He had many of the same characteristics—inflexibility, routine oriented, inability to understand proper social protocol, etc.  However, he was too outgoing and more aware of his environment and others to really fit into that diagnosis.

The Diagnosis
In December 2004, I took Rebekah to visit the doctor for an aliment.  While we were there, the pediatrician asked me about Rebekah’s speech.  She was not talking normally for a two almost three year old.  She made a lot of sounds, but very few words.  I told her how pleased I was with her progress since Duncan was not even making sounds at that age.  This started a conversation about Duncan and his delayed social behavior.  Our doctor mentioned Asperger's Syndrome and suggested we see a specialist in this area.  We happen to live in the same town where one of the few AS psychologist/therapist in the metroplex works.  We were able to get an appointment with her and have Duncan evaluated.  After visiting with the psychologist, completing multiple ‘tests’, and Duncan taking some various tests including IQ, we finally knew why he was so different.  While he is not considered to have severe AS, he does have moderate AS.  While you never like to have your child diagnosed with any type of disorder, in a way, this was a relief.  We were not just bad parents.  He was not ADD or ADHD and we were refusing to admit it.  He truly had a disorder that needed more than medicine and discipline to understand.  After reading Dr. Attwood’s book Asperger’s Syndrome, I realized that Duncan was normal for a child with Asperger’s Syndrome.

Time to brag a little
 He was in the first grade when he took his IQ test.  He tested on a 4^th grade math level, 3^rd grade reading, and late 2^nd grade spelling.  Yip, I was just a little proud.  I was concerned the psychologist would suggest us enrolling him in a public or private school, but she suggested I homeschool him as long as possible.  She said he would greatly benefit from the lack of distractions in normal classroom environments and would not have to deal with anxiety issues associated with not ‘fitting in’ with the other kids.

The Next Steps
We started seeing the psychologist on a regular basis.  For the most part, we discussed the major issues and she suggested options and ways to help us/him through them.  Our first item was his activeness which was causing him to be a danger to himself.  Our doctor hit the nail on the head.  He was not hyper, he was impulsive.  That was a total and complete description of his problem.  She suggested medication.  We initially frowned on that idea because we really wanted him to figure out how to work through these problems on his own.  However, after she explained how the medication worked it made complete sense.  It stimulates an area of the brain that is not being stimulated.  No amount of telling him not to run into the street was going to correct the fact his brain was not quick enough to process the danger.  We are currently using Adderall and have had great results.  He is staying more focused on his school work and is not doing the ‘nutty boy’ stuff that is not only silly but often times dangerous.

We also started working on his speech.  Even though we homeschool, we are still eligible for assistance through the public school system.  For reasons I will not go in to, we decided we needed to visit a private speech therapist.  After four months, the therapist had done a good job of helping him develop a cleaner speech and more normal pattern.  His speech still does not flow perfectly, but at least now he is thinking through what he wants to say before starting to speak.  The therapist also worked with him on conversations and answering questions others ask.  I remember one time when someone he did not know asked him how old he was.  He looked at the lady and said, “I’m not going to talk to you.”  As his mom, I was horrified, but I understood why he said that.  To him, the question did not make sense.  He knew how old he was, why was this lady asking?  Anyway, due to our insurance limitations, he did not get real far on conversations with the therapist, but we started working on it at home and he has improved.

Routines and rules were another area we started focusing on.  Duncan does great with a routine.  He likes to know what to expect and he is very comfortable in those routines.  However, we started trying to make sure that we built flexibility into our routines.  For example, if I need to run errands, I do not say first we are going to the bank, then the library, and then grocery store.  I will say, we need to run some errands.  We have to go to the bank, the library and the grocery store.  By not limiting it to just those three stops, I can add other places if I realize I forgot to mention them, and I can do them in any order I choose without getting into an argument about whether or not I lied to him because I did not do the exact things in the exact order I said I was.  It is a minor adjustment, but it helps him a lot.  We have also started utilizing his need for rules and fairness.  To him some things are just unbendable, unbreakable rules.  This is a good thing, as long as he is sticking to the right unbendable, unbreakable rules.  However, some things are not rules.  They are just general guide lines.  So, we try to make sure we differentiate between the two.

Socialization has been the hardest part for him and us.  He does not make friends easily.  He does not play well with others and he wears his emotions on his sleeve.  His vocabulary is fairly advanced, so kids tend to look at him like, “What are you talking about?”  Right now his special interest is Star Wars, so everything reminds him of something in Star Wars.  Which if he is talking to someone interested in Star Wars, they can carry on a lovely conversation.  However, not everyone is that interested in Star Wars, and that is very difficult for him to understand.  He has attended a social skills group, and understands a little bit better how to interact and play with others.  The group he attended was excellent.  It focused heavily on rules and fairness.  This is really the main area we still need to work with him.  He does have one friend that lives next door.  We are very grateful for this boy’s patience and understanding.  However, he is the exception.  Most kids tend to not want to deal with Duncan, make fun of him, or completely ignore him.  We hope in time, Duncan will start handling social situations better and be able to be a better friend, in order to make more friends.

This has been our adventure with Asperger’s Syndrome so far.  It is very possible Rebekah might have AS or a shadowing of it.  She is still a little young to accurately diagnose.  I have been very pleased with the doctors who have helped us and worked with us.  I think our pediatrician could have missed the AS part and diagnosed Duncan with ADD or ADHD.  When we were discussing his active behavior at age two and three, she was very firm about waiting until he was older to see if he would settle down and adjust.  By waiting, I think we were able to get a more accurate diagnosis that addressed the root cause of his problems. 

I know kids with AS tend to get a bad rap at times.  They can be seen as rude, standoffish, different, and overall difficult to be around.  At time, they are, but there is a lot more to these children.  Underneath all of Duncan’s differences is a sweet, sweet boy that loves to help out and do things for others.  Some times not understanding he is in fact a child and not an adult can get him in over his head, but in his heart he is a loving sweet little boy trying to fit into a world that does not make sense to him

November 2008 Update:  Currently Duncan is doing well.  He's slowly understanding respect better.  He still struggles with authority and interactions with other children, but we are beginning to see some great results from our years of explaining proper actions and reactions.  In 2006-2007 he was bless with a wonderful friend named Ben.  Ben was very unique in that he was totally patient and didn't seem to care that Duncan was different.  They both had a great love of Star Wars and became friends very quickly.  Unfortunately Ben moved, but at least Duncan had a great friend for a year.

Duncan has learned to be a little less rigid.  He's expanded from Star Wars and discovered some other great books and movies.  A couple of series I'd like to recommend would be the Encyclopedia Brown books and the graphic novels based on Ted Dekker's books.  Encyclopedia Brown books are quick to read and help kids to logically reason through 'mysteries'.  The Ted Dekker graphic novels provide a wonderful visual tool for teaching some of the basic Christian beliefs.  Most of Ted's books are modern day parables.  With The Circle Trilogy, he created a world where things that were normally unseen (i.e. sin) were visible.  These translate beautifully into graphic novels and really give a nice picture of the fall and redemption of man.

He still excels in school and while I know he can go faster, I've decided to keep him on pace.  If he was motivated to do more, I'd happily let him, but really he likes to play.  He also gets easily frustrated, so if we move too quickly and he's not understanding, learning is no longer a fun adventure, but a tedious task.

Anyway, we're making progress and I'm very proud of him.  He's really learning a lot and developing into a wonderful young man.

Rebekah
I wasn't terribly surprised when Bekah was diagnosed in August 2007 with a PDD (Pervasive Development Disorder) Non-Specified.  In many ways she developed much the same way as Duncan, but seemed to handle things differently.  She always seemed to have a desire to talk, but just didn't know what to say or how to say it.  For example, she would describe things instead of naming them.  We knew when she asked to watch Snow she meant A Very Merry Pooh Year, but most people didn't understand her language at all.  Like Duncan, her ability to work puzzles and identify shapes, colors, etc. was above average.  However, she was very withdrawn and shy.  She would walk into an unfamiliar place and try to hide under a table.  At times she would be so anxious and nervous, she would bite on her arm or pick at a spot until she made it bleed.  For about 3 years she had a constant spot on her nose where she would pick at it causing a sore to develop.  On the upside, she has an excellent imagination.  It's always been difficult to read to her since she really doesn't care what a story says.  She just makes up what she wants it to say.  She's incredibly visual with an amazing ability to draw.  While I struggle to create pictures, Bekah just looks at something and recreates it.  She's highly creative and can make a toy out of anything.  However, part of what makes her so talented is also what has kept her from developing 'normally'.

She is very creative, but she lacks an ability to maintain contact with earth some times.  She's a strong people pleaser, which has lead to her guessing the 'correct' answer even when there is no correct answer.  Trying to get a straight answer from her can be very challenging.  So as we began kindergarten I decided to have her evaluated and seek help getting her better equipped to deal with reality.

Her first visit was very interesting.  I was explaining to our therapist (the same we used for Duncan) that she would answer 'yes' to basically anything.  So I asked Bekah, is the sky green.  She responded 'yes'.  The therapist was fairly surprised, so she took over.  She asked Bekah to look at the sky and tell her what color it was.  Bekah replied the sky was green.  She then pointed to the color green and asked Bekah to identify the color.  Bekah correctly identified the color as green.  She did the same with blue and again, Bekah answered correctly.  Once again, the therapist asked her if the sky was green and again, Bekah said yes it was.  Anyway, after several minutes, the therapist told Bekah the sky was blue.  Bekah responded with yes the sky is blue.  You can kinda see what we were dealing with.  She understood her colors and she knew the sky was blue.  I just happened to give her a yes or no answer and she of course picked yes thinking it was correct.  She lacked that ability to reason and respond correctly.

Even though the therapist attempted multiple times to engage her in conversation, she was pretty much oblivious to anyone talking to her.  It was as though she was in another room all by herself with the toys.  Which is something we had noticed for sometime.  She always liked to be around us, but engaging her in activities was very difficult.  She had her own way of playing and her own way of doing things.  She never saw a need to play a game by some one else's rules.

As with Duncan, the therapist performed an IQ test.  Unlike Duncan's it did not go so well.  She did miserably.  Like I mentioned earlier, she's very spacey.  Keeping her focused was very difficult.  Additionally, rigidity of thought kicked in and she really struggled with some of the questions.  For example, she was asked to count three ducks.  She looked at them and immediately said, the ducks have no eyes.  Which was true, but irrelevant to counting them.   Even though she could easily have counted to three, she never got past the ducks having no eyes.  (Can you say OCD.  Something she struggles with tremendously, from sharing toys to changing routines, she is OCD)  Needless to say, this was not the only question that she zoomed in on one aspect and was unable to move forward.  After quiet a bit of effort to get her to respond, the test ended and the results not so great.  Basically she scored as mentally handicapped. 

Both the therapist and I agreed she was not mentally handicapped as much as unable to perform well on that type of test given her other issues.  Among other items, the therapist recommended we restart her speech therapy and begin giving her a mild stimulant.  We knew she needed speech therapy, but because of insurance issues had not had her in therapy the previous year.  Given her spaciness we were pretty sure she would benefit from a stimulant. 

We have had some difficulties with her medication.  Unlike Duncan she's not impulsive, she's just not always present.  She struggles with focus and staying on task, not because she's distracted, as much as what she's suppose to do is not registering.  We started with Adderall and it did not work very well for her.  It left her incredibly cranky and stripped away her happy demeanor.  Since we really only need her to stay focused through school, we decided to try a short acting medicine.  Right now we're using Metidate.  It's worked alright, but she tends to have a hard time coming off of it.  She's very cranky in the evenings and quite defiant.  Soon we're planning to try Stratera to see if it will work better, but I want to wait for a time when we'll be able to deal with the possible side effects affectively.

In the last year and half, Bekah has really improved her speech.  It's very clear and she's gaining a pretty good vocabulary.  Her speech therapists have been wonderful and extremely patient with her.  At this time she's starting to work more on comprehension and understanding what is being asked of her.

As far as school is concerned, we're taking things very very very slowly.  After me pulling out a lot of my hair, she's finally getting the concept of putting letter sounds together and reading some basic words.  It has been a struggle and we've had to change approaches a couple of times.  I'm using Phonic Pathways and combining it with letter blocks so she can see the words and put sounds together physically.  Writing and math she has excelled in.  Since she is able to draw so well, writing comes very naturally.  Our math program is manipulative based and she has picked it up extremely quickly.  Where she really struggles is reading and comprehending what has been read to her.

Eventually I think Rebekah will loose the PDD diagnosis.  She has made some great speech development progress.  She still struggles a lot with interacting with adults and children.  She still wants to communicate but really doesn't have any idea what to say or what to do, so she tends to start doing silly things and telling them to watch her.  Doesn't make a lot of sense to anyone.  She has begun to come out of her shell and open up in new environments.  She still struggles with new things and she has some rather irrational fears.  For example she totally freaks out when someone lights a grill, but she loves to sit near a burning fire place.  Unlike Duncan she doesn't suffer from coordination issues.  She easily excels in things that require hand eye coordination.  Additionally she doesn't have a problem being a kid and understanding authority.  She's not perfect and she can be disrespectful like any other child, but unlike Duncan, she does understand there is a chain of command and she's not at the top.  If she is able to overcomes her social and communication issues she will be able to outwardly lead a normal life.

I think in some ways Bekah suffered from being in the middle.  She followed Duncan who was so difficult for many years.  To a certain degree, I was tired and really didn't want to confront some of her development issues.  In other ways, she was such an easy going, happy, well behaved little girl, that I didn't notice some of her problems.  Don't get me wrong, there are times she's just as challenging if not more so than Duncan.  However, she's her own little girl and very unique in her development.  Like Duncan, I would never want to strip away her differentness.  I want her to be able to adjust and live life to its fullest.  She's very much a diamond in the rough that just needs a little more attention.

Dave
Dave is my enigma.  He's always been just a little different.  From the time he was born until today, he always seemed to be a little bit more serious than Duncan and Bekah.  Where Duncan and Bekah walked around with permanent smiles, Dave was always a little bit more mellow.  Never too excited and never too down.  A different sort of child.

I have not taken Dave to be evaluated.  He is in speech and occupational therapy and it doesn't take a rocket scientist to see that he has some definite autistic characteristics.  I guess if I had been understanding a little better about what was going on, I probably would have picked up on some of the signs very early.  For example, when we started solid foods with him at six months, he was determined not to touch them.  He fought, screamed, and absolutely refused to eat.  It wasn't the normal lets make him smile and he'll eventually like it.  It was much different.  Hindsight and many years of dealing with his unwillingness to eat normal food, I've come to understand it wasn't the type of food as much as it wasn't milk.  It was almost like he had determined the only thing that was 'right' to consume was milk.  Everything else was unacceptable.  This is an issue we've struggled with for years.  It's only been the last couple of months when he's began to start eating things we've put before him for four years.  For us it's a huge improvement. 

Other signs we noticed, included his playing habits.  He really didn't care to play with toys.  He liked to watch others play with them.  He didn't build with blocks, he wanted others to build so he could knock the building down.  He lined up toys and organized them, but he wasn't interested in them beyond that.  We've always struggled with finding things he liked.  He didn't care for puzzles, the computer, or normal children games.  Mainly he just enjoyed walking around and watching others play.

However, our biggest mistake was not recognizing how black and white his world was.  He is almost five and until about 4 months ago would not pick up a pencil.  The reason is simple looking back at it.  he thought it was wrong.  Bekah is not good at sharing toys.  So when Dave would go to get crayons or other drawing utensils, she'd tell him no and take it from him.  Even though we'd correct her, Dave had moved on to something else.  It was when we were trying to pottie train him that we figured out what all was going on.  Like most parents we started around two to two and half years.  At age four he finally trained.  Up to a certain point we didn't press the issue, but when he turned three we started actively working with him.  What we discovered is he thought it was wrong to pee and poop anywhere other than a diaper.  When he would go on a toilet he would become very upset and start crying.  Since he could hold it for an unreasonable amount of time, it took us a very long time to get enough successes with praises and cheers to get him beyond the idea that a diaper was the only place to go.  Anyway, those are just a couple of glimpses at the issues he has faced in his black and white world.  Right now he's only willing to wear a light blue shirt.  This is follow 9 months of wearing Larry Boy only t-shirt phase.

Like our other two children his speech is delayed.  Not something I'm to terribly worried about.  Just like the other two he'll come around.  He's already made some great progress.  Probably some of his best progress has come with help from his occupational therapist.  She's really done a wonderful job stimulating his creative and interactive skills.  He's still not much for crafts, but he has begun to like play dough and paints, which is a big improvement.  He's also found a strong interest in the Wii and Wii games, which has lead to him learning to spell some words. 

Like Duncan he's not fond of being held, hugged, or otherwise touched by strangers.  After almost five years, last month he finally let my daddy hug him, which was a major break through.  He's beginning to develop a bit of a personality, but I still haven't been able to discover what his gift is.  It might just be being Dave.  He's started to lighten up a little and be more adventuresome.  He's wanting to do rather than just watch.  He's really enjoying cooking and I try to let him help me as much as is safe for him.  A pretty strange development given his dislike food variety.

I guess at this point the verdict is still out on Dave.  I think it's safe to say he's definitely on the Autistic Spectrum, but the severity is still yet to be determined.  I could have him evaluated, but I'm not sure an official diagnosis would benefit anyone.  He is who he is and will develop at his own pace.  I've learned with Dave to push him when I have to, but if I give him enough time he'll usually follow on his own.

Three Autistic Spectrum Kids?
The question that begs to be asked is what happened that we have three children with strong autistic qualities?  Was it genetics?  Bad parenting?  Lack of socialization?  Fluke?  Well, the short answer is probably all of the above.  We certainly made our mistakes in parenting.  I can easily see where I could have done several things different, especially with Dave.  Dave was born shortly after Will's dad died and shortly before my mom died.  For awhile I was sorta going through the motions of being a parent.  It also didn't help that I volunteered heavily in church and in local organizations.  However, I don't think parenting can fully account for things that we didn't teach, strongly discouraged, and we can recognize so clearly in ourselves.

I big knock against home schooling is a lack of socialization.  This might have played a small part, but I don't give it a lot of credit.  Until last October our children were in church almost every Sunday morning and most Wednesday evenings.  They were around plenty of children.  However, they never were really able to develop strong friendships.  With Duncan the kids either picked on him or ignored him.  With Bekah and Dave they really didn't know what to do with them so mainly ignored them.  I probably should have done more to get them into other activities, but with AS children that can be difficult.  Most 'normal' leagues and organizations are not equipped to manage special needs children.  In hindsight I should have taken the therapist's suggestion to get Duncan into an AS play group shortly after his diagnosis.  He is in an AS karate class at this time and we're thinking about joining a local AS play group.

The genetic factor is probably the leading reason for our children's development.  Will is very intelligent.  He has an excellent memory and can learn things easier than most people even though he's ADD.  His mind works in a very logical and efficient manner and he has a gentle personality with a fierce loyalty to those he cares about.  All traits and characteristics I see in our children.  For myself, I've got a pretty descent intellect, nothing like Will's, but not too bad.  However, I am terribly uncomfortable in new situations and am pretty anti-social (one of the main reasons I haven't joined a play group yet).  I'm not a fond fan of going places where I don't know people or where I might only know one person.  I'm not a small talker and I don't have tons of friends.  Instead I have a few strong friendships that I wouldn't trade for a thousand acquaintances.  I'm a stickler for routine and doing things the way I always have even if there are more efficient methods.  Though you couldn't tell from my house I actually have a great mind for organization and just a little....ok so a lot....OCD.  Add to that a pretty good dose of ADD and you pretty much have my three children.  So most likely genetics played a large factor in our three children's development.

Really though, does it matter why?  Not really.  I could (and have spent) spend plenty of time analyzing each one of them and the various steps we've taken with them.  I'm positive I would (and have found) find things that could have been different, but the past can not be altered.  Our kids are who they are and we love them dearly.  They each are blessed with traits given to them by God so they can fulfill his purpose.  What that purpose is, we won't know for years to come.  While I do hope they will learn to cope with their environment and emotions, I really don't want to change who they are.  They are unique and God is not surprised by their quirks.

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