What is Asperger's Syndrome?
Asperger's Syndrome (AS) is neurological disorder on the autism spectrum.  Sometimes it is referred to as High Functioning Autism or Non Verbal Learning Disorder.

People with AS do not appear to have any special needs.  They look just like you and me and it is sometimes difficult to understand why the person with AS is acting the way they are.  One author (Brenda Smith Myles, 2005) described Asperger's Syndrome as the invisible disability.  "You could teach a child with AS the theory of relativity once and he'd get it.  But you'd have to tell him the rules for lining up for recess 500 times." 

Children with AS do not misbehave on purpose.  When a child with AS misbehaves, it is usually because he is overwhelmed and needs a break, does not understand what the person expects him to do, or is trying to block out the additional auditory and visual stimuli in the room in order to concentrate.  Do not ever take it personally when a child with AS misbehaves.  These children need a lot of love and understanding and once a person who deals with a child with AS accepts this, it makes life much easier for the caregiver and the child.

AS is not due to bad parenting.  Parents have been told by others who do not understand AS  that their child's disability (AS) is due to their inability to discipline their child.  This is not the truth and a parent should never feel that it is their fault that their child acts the way he does. 

There are many interventions to assist our children.  These include language assistance (semantics and pragmatics), occupational therapy for sensory needs and fine and gross motor skills, pharmaceutical drugs, biomedical interventions (vitamins, minerals, homeopathic methods), social skills groups, education on best ways to assist a child with AS for parents, therapists, counselors, and teachers,  and modifications to the home and school to allow our children to be as successful as they can be.  More information on interventions can be found on the Interventions page of this website.

Characteristics of Children with Asperger's Syndrome (1)

   Delayed social maturity and social reasoning
   Immature empathy
   Difficulty making friends and often teased by other children
   Difficulty with the communication and control of emotions
   Unusual Language abilities that include advanced vocabulary and syntax but delayed conversations skills
   A fascination with a topic that is unusual in intensity or focus
   Difficulty maintaining attention in class
   An unusual profile of learning abilities 
   A need for assistance with some self-help and organizational skills
   Clumsiness in terms of gait and coordination
   Sensitivity to specific sounds, aromas, textures or touch

(1) The Complete Guide to Asperger's Syndrome, Tony Attwood, Jessica Kingsley Publishers London and Philadelphia, 2007 Page 33.

How is Asperger's Syndrome Diagnosed?

There is not a test available to diagnose AS.  Many times people with AS are misdiagnosed or can have a co morbid condition with Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder (ODD), bi-polar disorder, or other mental illnesses.  Several questionnaires are available that can be taken by a person who suspects they have AS.  Dr. Tony Attwood's book, Asperger's Syndrome, A Guide for Parents and Professionals, Page 17-19 has a questionnaire called the Australian Scale for Asperger's Syndrome to see if further diagnostic assessments and a referral is warranted.  Also observations and interviews with the patient who is suspected of having AS should be used to determine actual diagnosis.  A mental health professional (psychiatrist or neurologist) should be consulted if one suspects they have a child with AS. The Thompson Center for Autism in Columbia, MO and the Judevine Center for Autism in St. Louis can perform evaluations on your child if you suspect they have AS. The assessment from Judevine should be brought to a medical professional to determine if further evaluation and testing is warranted. 

Possible Previous Diagnoses, Incomplete Diagnoses or Misdiagnoses (of AS)
(taken from A Parent's Guide to Asperger Syndrome & High Functioning Autism, page 42 and 43)

ADD / ADHD - Inattention; hyperactivity; impulsivity
Hearing disorder - reduced or complete lack of ability to hear sounds of multiple frequencies
Learning disabilities - Difficulty in reading, spelling, mathematics or written language that is unexpected given age, education, and intelligence
Mental Retardation - Intelligence scores below 70; inability to perform activities of daily living independently and at levels expected for age
Nonverbal learning disorder (NVL) - Math skills significantly below IQ; nonverbal IQ significantly below verbal IQ; difficulty with spatial processes (puzzles, maps); poor handwriting; poor motor skills, cluminess
Obsessive-compulsive disorder (OCD) - persistent, repetitive thoughts, actions or rituals; high anxiety if not allowed to perform acts; understanding that the behavior is senseless
Oppositional defiant disorder (ODD) - negativistic, hostile, defiant, or disorbedient behavior toward authority figures
Reactive attachment disorder - Markedly disturbed social relatedness; significant abuse or neglect
Schizoid personality disorder - Little interest in social relationships; unemotional or few strong emotional responses
Schizophrenia or Psychotic disorder - Bizarre, fixed beliefs (delusions); unusual perceptual experences (hallucinations); disorganized speech and behavior
Selective Mutism - Consistent failure or speak in social situations (school) despite speaking in other situations (home)
Social anxiety disorder (social phobia) - Marked, persistant fear of social situations; recognition that the fear is excessive/unreasonable
Speech-language disorders - Failure to use pronounciation, vocabulary, or grammer expected for age (shorter and less complex sentences); difficulty understanding language and processing verbal instructions
Tourette Syndrome - Tics (sudden, rapid, recurrent movements or sounds)

Other Disorders that often co-exist with AS or High Functioning Autism
(taken from A Parent's Guide to Asperger Syndrome & High Functioning Autism, page 44)

Anxiety disorders - Excessive worry; avoidance of certain situations or objects due to fear
ADD / ADHD - Inattention; hyperactivity; impulsivity
Depression - Sadness and/or irritability; loss of interest in previously pleasurable activities; changes in eating and sleeping patterns; fatigue and loss of energy; feelings of worthlessness, hopelessness; suicidal thoughts or behaviors
Tourette Syndrome - Tics (sudden, rapid, recurrent movements or sounds)


Interesting Articles on Asperger's Syndrome

Visit the Saint Louis Network Of Care website at
http://stlouis.mo.networkofcare.org/dd/library/articleList.cfm?cat=126 
to view the following articles on Asperger's Syndrome:
   Asperger Syndrome Presents Special Challenges for Nurses
   Asperger's Disorder
   Asperger's Syndrome
   Asperger's Syndrome in Women: A Different Set of Challenges?
   Asperger's Syndrome: A Developmental Puzzle
   Blinded By Their Strengths: The Topsy-Turvy World of Asperger's Syndrome
   Einstein, Newton, and Asperger Syndrome
   Motor Clumsiness
   Representing Cassandra in Matrimonial Law: Asperger's Syndrome in Separation and Divorce
   Ten Tips for Helping Your Child with Asperger Syndrome Get Ready to Return to School

A Parent's Journey

My son was born a beautiful 7 pound 8 ounce baby.  He was the joy of my life.  My husband and I had waited a long time for him to be born and we were excited when he was born.  He drank his formula like a little pig, burped, pooped, peed, cooed and made funny noises, smiled, played patty cake, crawled and walked.  He was always a happy little boy. 

My son had his first birthday and we had all our friends and family there.  It was such a happy occasion.  I was proud of my son.  He would go to church and the nursery school teacher would say that he was the smartest little boy she had ever met.  She had been teaching little children for over thirty five years.  Wow, what a compliment!  My son is a very bright little boy.  What a future he has!  I can't wait to see him grow up....we had many hopes and dreams for our son.

Well, then the seizures came and life was never the same.  Oh my gosh, my son is seizing!  What do I do?  I immediately called 911.  I was a basket case.  The firemen were wonderful - they took good care of my son.  They allowed him to be calm and gave him oxygen while he was seizing.  When will this stop? It seemed like an eternity.  The seizure went on and on.  It lasted over ten minutes.  I thought for sure my son was going to have brain damage from this.  I later found out that 30% of children on the autism spectrum (including Asperger's Syndrome) have seizures.

The ambulance took us to the hospital and the doctor told us that my son would be fine.  I sat in the emergency room holding my son close to me.  It started again!  More seizing!  I screamed at my husband, Honey, get the doctor, Honey, get the doctor NOW!  They then took my son away from me.  What are they going to do with my kid I wondered.  The the doctor came in and said he had siezed two more times.  Oh my gosh, four seizures in a period of a couple fo hours!  Surely my son cannot endure such hardship without some medical consequences.  Once again, the doctor assured me he would be fine but he wanted to send him to Childrens Hospital to observe him overnight.  I had had my son with me his whole life.  What would I do without him for one night?  Well, Children's Hospital said he was fine and I took him home.  They said the siezure was due to a spike in his fever (febrile seizure).

My son did not appear to have suffered any consequences from the seizure.  I had to be very careful every time he had a fever to be sure that he would get tylenol and motrin at the right time and that I would put him in the tub and dump water over his head to cool him down to prevent future seizures.  Well, sometimes it worked, sometimes it didn't.  I cannot even remember now how many siezures he has had since that first one and how many times we have been to the hospital because of them.  Each time, the doctors said it was due to a spike in his fever. 

Well, things went on normally (or at least I thought they were normal).  My son was always very active and very strong willed.  When he turned three, I started to get concerned that something was not quite right because of his behaviors.  I took him to school to be assessed and they said he passed their screening.  Well, of course he did.  He is very bright.  If the screener is only looking at academics, then he will pass.  But if the screener comes to my home and observes the behaviors, the answer would be different. 

I remember one day taking my son on an airplane trip to see his grandfather and his grandmother.  My son was barely three years old.  He was always strong willed and wanted to do what he wanted to do when he wanted to do it.  We were at the airport and he wanted to run around and be chased.  I did not want him to do this.  Well, he proceeded to have a melt down for 45 minutes - kicking and screaming.  People would stare at me as if to say, why can't you control your child?  I WAS CONTROLLING MY CHILD!  That is why he was having a meltdown.  I had read all the books on how to handle a strong willed child and I was determined to implement them.  I was exhausted by the time it came to get on the airplane.  No one would help me with my son.  When we went to get on the airplane, the stewardess said, "I am sorry ma'am, but the pilot will not allow you on this plane if you cannot control your child."  By that time, I was in tears and just left and did not get on the airplane.  I called my dad and he came back to the airport.  He waited with me for over ten hours to wait for the next airplane.  I tried to get my son to sleep.  He would not.  He took one of those carts that you put your luggage in and just kept moving it back and forth, back and forth, back and forth.  How does he have so much energy?  After nine hours of this, I finally laid down with him in the airport and he fell asleep.  Thank God! 

I took my son to a preschool.  It was a preschool for kids with special needs and kids without special needs.  At that time, my son was not determined to be a special needs kid.  I just liked the preschool so I sent him there.  After about six months or so there, his teacher noted his behaviors.  She asked me if I had ever had him assessed through the school.  I said yes and that they said he was fine.  She said, "I will help you"  Finally, someone that is on my side and understands that my son does have behavior issues.  He received a diagnosis of Young Child with Developmental Delays and received an Individual Education Plan.  He did well but still had some issues with behaviors even after the IEP.  The IEP Team came together after one year and determined my son did not need services anymore because he had met all of his goals.  The hardest part about this is that everyone would be blinded by my son because he was so bright.  How could one child be so bright but not be able to control his emotions?  I have been on a mission ever since to help people understand that our kids are very bright but need help with those things called "functional goals"  These "functional goals" are the things that allow our children to be productive members of society - saying hello to someone when they greet you, knowing how to ask if they can play, combing their hair, brushing their teeth, not yelling out in class, paying attention in class, being organized, having a back and forth meaningful conversation, taking turns, getting dressed by themselves, getting their own food, cleaning their plates, etc. etc. etc.  Who would have thought that such a bright child would not be able to do these "functional goals".  It doesn't make a whole lot of sense to me either except for the fact that it is part of my son's diagnosis of Asperger's Syndrome and we will always have to work on them.