Learning for an autistic child can take quite a curious route. For my son Matt, the simple process of learning to write is one such example. After learning the alphabet (another curious route) words were the next logical step. We taught him his name, address, and the names of family members, but Matt wanted to know more important words - like “train”. Usually a child begins to learn more words of their daily life, like “dog” and “cat” and “house”.  Not so with Matt. Once he understood that letters formed words his attention went to the listing of his favorite items in a group. Whatever he listed also became new drawings and the progression of his writing became intimately tied to his love of art. His love of trains brought with it the need to list every type of car pulled by the engine and paper after paper was filled with the list – “coal car”, “gondola car”, “box car”, etc. He also found weather to be quite fascinating and started writing long lists of weather related phenomena; “tornado” , “cyclone”, “hurricane” . . . The biggest of storms – hurricanes – have names, and Matt started writing the list of each major hurricane that hit the United States. This led to an interest in all natural disasters and made into a separate, specific list.  The list of natural disasters was followed by a list of all US disasters; “Titanic”, Challenger”, Oklahoma Bombing”, etc. The lists would be simple at first – just the names, but soon I noticed that each list was evolving to include detailed information, such as dates, specific locations and the number of people killed. Lists were a curious behavior he engaged in everyday. New subject lists took time to start, as if he had to know absolutely everything from the previous list before he could venture on to a new one. Drawings of twisters, the titanic, and the space shuttle blowing up filled his art collection – extremely detailed pictures to match extremely detailed lists.  Over the years the intervals between an old list and a new list got shorter and shorter. He went from creating his lists on paper to typing his lists on the computer (saving us reams of paper). I still have the files containing Matt’s lists on my computer, and open them on occasion to just marvel at their thoroughness. Even typing using just a 12 font the list of just one subject can take several pages. His desire to memorize each list brought a wealth of information and Matt could spout off details at will. “How many planets are there, Matt?”  Matt would not only answer with the number but also with the distance of each planet from the sun, the number of moons and rings, and the characteristics of each planet’s specific atmosphere. No wonder Matt did so well in school! After all, most classes ask students to know a list – History, for example, requires a student to know events and their dates, and this was right up Matt’s alley. Matt also wrote lists of his favorite video games and movies. Some of his favorite video games were war games and race-car games. We soon began seeing lists of weapons, armored vehicles, and body gear worn by the soldiers along with new drawings that contained the details of each item. Various types of race cars found their way into his art as well – very detailed race cars. The art and the lists went hand-in-hand. Each list was accompanied by drawing after drawing.  His favorite movies were put on pause and then drawn scene by scene - the important details captured in his art. Of course, there were long lists of his favorite films to go along with them. In the beginning it all seemed a bit curious - that is until I realized that this was how Matt was learning. I soon dawned on me that Matt’s mind was organizing, filing away each bit of information into a specific category and it was tediously hard work.  Many autistic individuals perform similar rituals and most people brush it off as a quirk of behavior, but I would advise them to look deeper, and ask "why?" Everyone has a special method of learning and we intuitively know how to encourage their gifts.  Then we find ourselves raising an autistic child and we forget to be intuitive. Matt’s specific method of learning used lists and drawings. This was his gift – the ability to organize everything to where it could be understood, and retrieved upon demand. He still uses this method for learning new things. His focus is still very intense. He must see the words. He must put them into categorical lists. He must see each item –as detailed as possible. He must train his hands to draw the subject from memory. This is the sequence of his learning strategy. I wish I had een it earlier - I might have advanced his learning sooner. It didn't end there. Words must be put together to make sentences, and this was the most difficult aspects of school. Matt had no desire to add words that could not describe the items of his list and these words were often left completely out when writing a sentence; if, as, it, the, at, or, to. I called them the “useless little words”. Matt had trouble with the insertion of these words into sentences for most of his school years, making English his worst subject. This area of difficulty was finally overcome by Matt’s desire to know more details on a subject and create new story lines for his art. He began reading more. He would copy a story line by line to paper first, then just as he had trained his hands to draw, he trained his mind to write. He copied story after story verbatim, and this meant even the little words had to be written. As his reading progressed from simple stories to novels we saw a dramatic change in his ability to write. I would love to tell you that we had a gifted teacher that taught him these things, or brag on my superb skills of parenting - but let's get real.  In reality, Matt taught himself to write. The teachers helped and I helped – because we supplied him with paper, lots and lots of paper, and we supplied him with reading material – book after book. Most importantly, Matt was allowed to continue his curious behaviors.  The ability to learn came about through repeated practice - on Matt’s own terms - in the making of lists, the drawing of pictures and the writing of stories.  This entire progression encompassed years and required his intense focus - a gift that came from within him.  The curious behavior of list making, a behavior considered quite odd to those unaware, was his way of learning to connect the dots. Matt knew how to train his own brain in a way which was logical to him. Alas, I had only a supporting role in that I supported his curious behaviors (and supplied him with a forest full of paper). To this day I am still in awe of the intensity at which he still drives himself to learn. To the unaware, Matt seems focused on the mundane and his behaviors appear oddly ritualistic.  Looking deeper one can see he  was actually organizing his mind. I admit I never really understood his needs back then, but I am very glad I supported them.  I can see it all so very clearly now . . . . So this story is for those watching the curious behaviors of their autistic child and trying to figure out if these behaviors are acceptable or should be deterred. I understand they appear a bit strange and I am aware that many parents feel these behaviors are unacceptable and want to promote something more “normal”.  I would like to stress the exact opposite.  I challenge you to look a bit deeper.  There’s a good possibility that your autistic child has found their very own unique way to learn. I don't see the behaviors as odd - not anymore. I highly recommend you support the curious.

When my son, Matt, was a little over year old he would hold up a ball in one hand, extend his arm and turn it this way and that, looking at it from all angles. That was when I knew that Matt would someday be an artist. What I did not know was that he would soon be autistic as well. When the initial symptoms of autism arose it seemed to put Matt’s mind on hold, and in many ways regress. Sensations from light and sound to simple textures became uncomfortable.  He had to deal with the onslaught of his environment and it was overwhelming. These were unsure times – would my son be tortured this way his entire life?  Would he ever be able to communicate with me? I look back now and am amazed at how fast Matt learned to deal with these intensified stimuli.  In dealing with such a change in his perceived environment Matt went through a period of adjustment – the classic autism behaviors arose.  He had regressed so much that I wondered if he had lost his artistic eye.  Had it been lost or had art simply taken a back seat to the emergence of his autism? It wasn’t until several years later that I noticed his eye for perspective and talent toward perceptual – conceptual art was still intact. Matt began to draw as all children do with scribbles using a crayon or pencil.  He drew simple lines on a page at various angles without pattern or reason – what I called his “primitive art”.  That changed the day I drew a picture of a train for my oldest son, Christopher.  Matt watched in fascination from a short distance away as I sketched a train.  I was teaching Christopher to draw and talked to him about lines and perspective and copying from a simple picture.  I showed him how to create simple details.  Soon my simple lines on a page became something recognizable – a locomotive.  Christopher began to draw his own version, copying from a picture in a book and adding small details. Matt had watched the whole lesson and even though he was only 3 years old he was hooked – drawing fascinated him. From that day on Matt would bring me a paper and pencil and force it into my hand to signal to me it was time to draw a train. This became another daily routine – that is until I decided to change things up a bit.  Again, Matt brought me the paper and pencil and I promptly sat down on the floor with him as expected.  This time however, I placed Matt in my lap and put the pencil in his hand.  I covered his hand with mine and together we drew a simple train. Matt was nervous and his grip on the pencil waivered but I held firm and we continued on until a simple locomotive appeared on the page. I let go.  Matt put his new drawing on the floor and started to copy it himself, just as his brother had done.  His lines were barely visible as he lightly scribbled across the page, trying desperately to create an image.  The lines were somewhat chaotic but they soon merged to form a somewhat recognizable image – a locomotive. From then on Matt drew daily.  Beauty is in the eye of the beholder and while primitive in its form his pictures were beautiful to me. I watched him evolve to create new patterns and lines on page after page and often wondered if these patterns actually meant something.  Could they be revealing his thoughts?  Still unable to speak, I understood that Matt could be trying to communicate thought through his art.  With this in mind, I examined each piece of his primitive art with deep interest. What was the meaning behind the shapes and the lines?  One of his early drawings - a set 3 V-shaped lines in row after row - was something he would draw almost every day.  What were the 3-Vs? Then one day while riding in the car I glanced back to see Matt staring upward out the window.  In a moment of curiosity, I leaned back and looked up.  At first I didn’t notice anything of interest. Refusing to give up, I kept my gaze upward and that’s when it hit me. I finally saw what was so fascinating to my son - power lines. It was one of those “ah-ha” moments that I will never forget.  The large power lines that traversed the mountains near our home created a pattern of long straight lines.  Each power pole had a set of 3 V-shaped connections. Matt had been drawing the power lines.  I learned an important lesson that day - there really were messages in his artwork. The most important is that my son had thoughts of his own and was not incapable of independent thought or feelings - the professionals were wrong about that dismal prediction. Something deeper was also ignited in moving pencil across paper – a fascination with the skillfulness of drawing and a desire to be capable of creating by hand what he saw in his mind.  Matt still asked, in his own non-verbal way, for me to draw for him.  It wasn’t what I was drawing, but the act of drawing that was tugging on his soul.  Matt wanted to create.  As he watched my hand draw line after line his hands would flap faster and faster. Obviously, Matt was getting more excited as the picture emerged from the previously blank page.  It didn’t take long for the fascination to turn into an obsession – Matt now needed me to draw for him every day, over and over.  Don’t get me wrong, I didn’t mind drawing – I love to sketch – but the amount of time I was spending repeatedly drawing one train after another was preventing me from doing other needed tasks.  I wanted Matt to draw for me but he was very frustrated by his own work – it didn’t look like what he wanted it to look like.  Finally one day - on the spur of the moment - I changed our routine  . . . again. I put the paper over a picture of a train on the cover of one of his train books, picked him up and put him in my lap, placed the pencil in his hand and covered his hand with my own. Together we traced the train.  I picked up another sheet of paper and we traced the train again. This time his hand had a firmer grasp and he directed the pencil instead of me.  Soon a picture emerged of the train from the book cover – a bit shaky and not very pretty, but still it was clearly the same train and Matt had drawn it. I didn’t know it at the time, but on that day I had given my son a skill that changed his whole life. Tracing gave him a new found pleasure in art. Now he could create a drawing and it would look as it should.  Drawing was NOT just a past-time, it was a necessity.  Unfortunately, he couldn’t trace while at preschool and had to draw free-hand.  Each day he brought home assignment papers from school I would immediately turn them over to look on the back of each page.  There I would find the most interesting drawings. Unable to trace, Matt had to recall his favorite items from memory - he would draw what he saw in his mind’s eye. These were of course very child-like drawings, not up to Matt’s standards of perfection he expected from those that he traced. In order to correct this perceived “flaw” Matt had to teach himself how to draw free-hand. Matt would sit in is room and draw the same picture over and over. The first few were traced from a picture of his choice and the next would be drawn free-hand. He never erased. Each time a line was drawn at the wrong angle or too long he would crumble the entire sheet into a ball and toss it away. He had to have perfection. His hands would draw slowly at first, getting each detail just right. Then he would repeat the process over and over until his hands could fly across the page and draw the most intricate of pictures in under 5 minutes - without tracing. This isn’t all that unusual if you think about it. Lots of people train their hands; crocheting, making pottery, driving a stick shift. Practice over and over allows one to perform a function without looking. Matt’s love was drawing and he trained his hands to draw without thinking about how his hands moved. This allowed him to draw any time and anywhere without having any of his beloved train books in front of him. He began taking paper and pencil with him where ever we went – always ready to draw if the need overtook him. Drawing calmed his mind, allowed him to focus on the minute details of various objects and decreased his fear of new surroundings and sounds. He used his art to communicate as well, telling me what he needed and what he was thinking. Matt had found a way to make peace with a chaotic world. As Matt got older his interest veered more toward animation. The cartoons he watched became a daily ritual and the characters became his imaginary friends. He would repeat the spoken lines of each character and add a few responses from himself. His new friends began to show up in his art.  Again, Matt  would practice drawing each facet, his hands moving slowly at first. He practiced drawing just eyes, then just facial expressions, and then body gestures. Page after page of practice allowed him to then combine these pieces to show any situation and every type of movement. Each new drawing became more and more detailed. Between the ages of 12 and 16 Matt learned to draw himself and began putting himself into his drawings along with his cartoon friends. As a part of learning to draw, Matt was also learning new social skills. He used his animated self to interact with his animated friends, converse, and display both sad times and good. Watching him interact with animated characters concerned me at first – was this new behavior a good thing or a bad thing? I chose to think of it as a good thing – after all, he was learning to interact, even if it was not with real people. I’m glad I decided to just let it flow out of him this way because I soon realized his ability to interact with real, live people was improving dramatically. Matt had used the safety of his art to practice social skills and emotion. After getting comfortable with his animated friends he could now test his new-found skills on family members and schoolmates. Matt found a way to communicate without overwhelming fear of the unknown. Matt still takes paper and pencils with him where ever we go. Most times it is like taking a safety blanket and the items are never used. Sometimes he sees something and just needs to draw it – like the various street signs, or thebeach at Hatteras, but these drawings are for later use in the stories he writes. Matt realized his animations needed dialogue – after all, comic books and cartoons each have a story line. So Matt not only draws, he writes. Where in earlier years he could only communicate through his body language, he now can communicate through speech, the written word, emotion, body language, and various forms of art. His stories revolve around his own life, historical events, and places he has both visited and places he has yet to see.  Art has transformed his mind. Matt is now 25 years old.  He graduated high school in 2005 with a GPA of 3.85 and number 4 in his class.  He was a National Honor Society member and is in Who’s Who Among High School Students.  He can converse, though he keeps his comments quite short, and he has good eye contact as long as those he talks to are smiling.  He is intelligent, a very deep thinker, and a deeply feeling young man.  He interacts and he has opinions.  The great strides that he has achieved are all a result of his attention to detail, hours upon hours of drawing and in the evolution of drawing objects to drawing situations and stories. Autism has finally taken a backseat to who he really is – an artist. If I could pinpoint one pivotal moment in Matt’s life that changed his whole world and changed the path of his life, it would have to be the day that I put Matt in my lap, placed a pencil in his hand, placed my hand gently over his and we began to trace. I didn’t know it at the time, but that one act - that simple, 15 minutes of attention - gave Matt the one thing he needed to transform his entire life – a way to express himself through his art.

When do you tell your autistic child they are autistic?  When do you explain to them what autism is?  How do you know when the time is right?  I'm sure these are questions all parents face as they move through the years. The time for one may not be the time for another.  So, what’s the answer? Quite simply, the right time will eventually present itself. Matt was still very young when I first used the word autism in his presence.  It finally dawned on me that autism was not something he or I should be ashamed of.  When Matt was only 8 years old I got my first opportunity to tell him he was autistic.  I noticed that he was more aware that other people were different from him.  He could tell he was not like his brothers or sister, nor like the other kids at school. One day he asked why he had an aide. He had noticed that his paraprofessional, who sat with him during class,was there with him every day.  Although she would help other children also, she was obviously there primarily for him.  Why did the other children get to sit by themselves?  Matt wanted a simple explanation for this perceived anomaly. I sat in silence for a moment trying to decide how to tell him.  This was my first fork in the road.  Do I explain to him what autism is?  Do I water it down and give him a simple answer? I had been expecting him to ask for some time and thought I was prepared, but I wasn’t.  My heart raced.  Clearly I was nervous.  “Matt, you have autism.” I began. “Autism?” he asked, using that quizzical inflection of his voice that I knew so well. “It means you need some extra help.” How lame. I skirted around an in-depth explanation, but I felt Matt didn’t seem to need more than that.  I had taken the low road - the easy way out. I would find out later how wrong I was. Time went on. I started to notice more and more that when ever Matt overheard someone say the word “autism” in reference to him, his face scrunched up as if he had just had a whiff of something bad.  The word upset him. How many times had he heard this word at school? How often had he wondered why he was different? Clearly the word autism made him feel like he was some how less. I finally realized that by skirting around the question with my previous explanation I had most likely made him feel worse. Matt was between 10 and 11 years old when I finally talked to him about autism - really talked.  He had been struggling with the concept of being different and he sure didn’t want to be any less than anyone else.  Speech therapy and aides made him stand out at school and his awareness of self at that age was really kicking in.  The “extra help” explanation just didn’t cut it anymore.  One day as we were driving home from school, Matt was talking aloud to himself – a very common autistic behavior - and I heard him say in a disgusted voice, “I don’t like autism”. I calmly asked, “Do you know what that word means?”  “No!” He was quick to reply, “What’s autism?”  We had just arrived at the next fork in the road; do I explain autism this time, really explain it, or do I give him the watered down version again?  I knew Matt was smart, that he could probably handle a real explanation, but part of me still thought of him as too young to have the whole mess dumped in his lap. Since Matt had actually asked specifically about autism, I decided that  meant he was ready for some straight answers. I decided to take the high road. “Autism means that when you were young your brain was injured.” I said, patting him on the head. Matt had taken biology - he knew where his brain was.  His face scrunched up – a sign that he was thinking about what I had just said and didn’t like it – not one bit!  “My brain was injured!?”  He stated in a voice filled with shock and yet very matter-of-fact.  I knew he was really trying to understand.  I could tell he needed time to mull things over and we sat in silence for the next few minutes until we arrived home. Matt got out of the car and headed straight to his room.  I thought about our conversation. Had I really just told my youngest son that his brain was injured?  I berated myself for having said it, thinking of how awful Matt must feel.  I gathered my courage and headed for his bedroom. Matt was watching a video, drawing cartoon characters, and talking to himself.  I sat down on his bed and asked him to sit with me. I took a deep breath, gave Matt a hug and started my second attempt at explaining autism.  “Matt, you know you are autistic, right?", I asked.  “I don’t like autism”, he quickly replied.  “Autism is not a bad thing, Matt.”  Did I really mean that?  “Remember when I told you that when you were little you hurt your brain?” I asked. “Yes”, he replied, with a hint of sadness in his voice.  “Did you know that the human brain is really cool?” I asked. “Huh?” He was intrigued. “Yep, the brain is very cool.  When one area of the brain gets hurt another area of the brain takes over.  Sometimes it takes a while, but the brain tries very hard to fix itself”.  Matt looked at me for a split second - a quick glance at my face, trying to decide if I was telling him the truth.  “Some things are hard to learn because the brain is trying to think of a new way to do it, but the brain does find a way to learn, Matt.” I had just captured Matt’s full attention.  "How did I hurt my brain?" he asked. "Well, we just don't know for sure.  Not even your doctor knows how."  He could see on my face this was true.  "But we have been working very hard to fix the problem, and that's why you have speech and that's why you have an aide at school." Evidently, I hit upon what Matt really wanted - what he NEEDED to know – that he was different because of an injury - an accident - not something he did wrong.  He needed to know he had a reason to be different, that there was hope, that his brain could still learn the things he wanted to learn, and that he would be O.K.  I continued on for a good long while, telling him about all the new things he had learned since he was 2 years old.  I gave him examples of autistic behaviors and emphasized how he had overcome so many. Matt listened intently.  Some of his behaviors from when he was young he couldn’t remember, like hand-flapping, spinning, and sleeping on the floor of my bedroom.  I emphasized over and over how proud I was - how proud everyone was - of his specific accomplishments.  As he listened, I imagined him marking each of those behaviors off a mental list. I could tell he was absorbing everything I was saying. I also told him that autism had a special feature – his artistic gift.  I pointed to his drawings and remarked on his accuracy and his use of perspective. I compared his art to that of the other children his age and made sure he knew – absolutely knew – that his art was uniquely special. It was a good talk.  I felt better about how I handled the topic and more importantly, Matt felt better about himself.  From that point on when ever Matt came upon something difficult to learn he could realize that his brain was working hard to find another way to understand.  Matt now knew there was a reason for the differences he saw when he compared himself to others. He made it his mission to try to do what others did, and this pushed him to drop more and more autistic behaviors. The years that followed were filled with goals Matt made for himself. He had an image of himself he wanted to attain.  Matt worked very hard to be Matt. Over the years we have pointed out his special gifts and discussed his future in terms of challenges and goals.  Matt continues to meet those challenges head-on, without showing fear, and with a determination of a man on a mission.  His progress toward his goal of independence began that day so long ago, sitting on his bed and discussing autism.  Of course, there have been tearful days too, days when a very frustrated Matt has cried, “I hate my brain!”. But there have been even more days of hearing a very proud and triumphant “YES!” when he is sucessful and accomplishes a goal. We don’t dwell on the negative aspects of autism anymore.  Instead, we use the term more as a reaffirmation of Matt’s wonderfully unique qualities.  Matt likes who he is.  He doesn’t see himself as handicapped and neither do we – the ever expanding group of people who know and love him. Autism - the word just isn’t as foreboding as it used to be.  It has evolved to become more associated with the term unique. I know every parent at some point has to explain to their autistic child what autism is. Personally, I’m thankful that particular hurdle has been crossed. I can still remember the terrible anxiety I felt leading up to our talk. For those of you who have yet to explain autism, my only advice is to be kind to yourself.  It’s a hard topic and you will get through it. Realize that it may take a few attempts. Explain autism in your own way, one that is comfortable for both you and your child. Stress that they’re just different, not less. And keep in mind that the human brain is a miraculous organ.  It will try to find a way to make new connections to replace those that were lost. What is autism?  Autism is when the mind attempts to find a different and unique way to learn and understand this world. Given the right tools and a loving environment, it will.

Tom and I watched the film, “Temple Grandin”.  If you have not yet had a chance to see it, then I highly recommend that you do – especially if you know someone autistic. The directors did a wonderful job of capturing the curious behaviors and mannerisms of Temple’s autism. Many of the mannerisms shown in the movie have been observed in my own son, Matt.  As I watched I couldn’t help but think of Matt – both about the similarities and the differences.  Although both Temple and Matt are what professionals would consider high-functioning, they are still very different in almost as many ways as they are the same. Temple’s mother stressed to her that she was different . . . not less.  I have stressed this same view of autism to Matt.  Among other similarities is the ability to think in pictures.  They both see minute details that we neurotypical individuals do not notice without a bit of help. Ask a question about the solar system or a jet flying overhead (two of Matt’s favorite subjects) and he will give you all the details. With Temple it was cow behavior, with Matt, it is space, military armament, and video games. Both have favorite shows on television and both recite lines from their favorite show repeatedly.  Both were diagnosed during a time when the condition was rare (1:10,000) and both mothers were advised to place their autistic child in a home.  During the time of Temple’s diagnosis the experts thought the condition was caused by cold, aloof mothers.  Matt was diagnosed several years later and the refrigerator mother hypothesis was finally in dispute.  I heard it only a few times and was able to refute the misconception. I did not have to endure that accusation very often, thank goodness. Differences between the two are obvious to me.  Matt can not communicate as well as Temple could.  It is a facet of his condition, something we work on daily, but the fact of the matter is, Matt may never be a very good communicator.  Autism is a spectrum diagnosis - no two children are alike. That means that although both Temple and Matt are considered high functioning for various reasons, their progression toward independence is vastly different. Matt does not hold conversations, can not voice his opinion whenever he needs to, can’t drive where he wants to go and can not yet live on his own.  We are working on each of these areas as they are the goals that must be reached if he is to achieve his independence.  Unfortunately, the simple fact is, Matt does not communicate as well as Temple. Consider what communication or the lack there of means to our overall ability to fend for ourselves.  Not being able to directly communicate a thought has consequences in such everyday activities as driving, education, securing employment and performing a job. If the power goes out, can he call the electric company? If he hits a deer with his car, can he figure out what to do? Even worse, if he is in an accident, can he handle the barrage of questions from an officer?  If he runs low on groceries or other supplies before he gets paid, can he ask someone for help?  If a pan gets too hot on the stove and sets off the fire alarm, can he handle the situation?  If, heaven forbid, a fire breaks out, can he get himself out and call the fire department? Of all the goals we set for our autistic children, communicationis the absolute key to their independence. Matt is considered high functioning because he has left many of his childhood mannerisms behind.  He will talk to others if prompted and will interact with family and friends – not as much as Temple can, but he has come an extremely long way from where he started.  In the film it was obvious that Temple’s ability to communicate is far more advanced than Matt’s. It was her ability to speak her thoughts that allowed her to press on in her education, write her many papers, live on her own, and drive.  When we look at the one thing we want for our children, verbal communication should be toward the top of the list.  Early diagnosis and speech therapy are an absolute necessity. We watched the film and cried during several scenes as Temple struggled with interactions with her family, her peers and with strangers. These are all areas that I know Matt struggles with too.  Temple was able to over come this aspect of her autism, Matt has not. Matt is different than Temple– but not less. Temple showed more difficulty with displays of emotion than Matt. Matt can tell me “I love you” and it is heartfelt. Matt gives me strong, warm hugs.  Matt can empathize with emotional pain.  He has learned to read many emotions.  I still can remember him practicing his many facial expressions and emotions in a mirror when he was little. Emotions are very difficult for Temple Grandin. I am Matt’s mother and his best friend and I have to say that a hug from Matt is worth more to me than I can express.  As a matter of fact, if I were given the choice between Matt sharing his emotions or him being able to communicate better, I would have to choose the emotion. By being able to bond with me emotionally I have what some parents of autistic children may never have – a visible, tactile, expression of love. It may be selfish of me to put his ability to form emotional bonds over his the ability to verbally express himself, but then again, Matt is my son, the light of my life, and a hug and a kiss from Matt is oh, so special.  It’s special because it’s something I never dreamed I would experience. On the autism spectrum Matt is considered high functioning, as is Temple Grandin. They are the same in many ways and different in many more.  I would wager Temple to be much higher on the scale than Matt in many aspects, and Matt to be higher in others.  Each is different . . . not less.

Doesn’t a nice dip in the hot tub sound great?  My back is stiff and aching and I find the hot water and strong jets are just what I need when the weather turns cool.  I ask Matt if he wants to get in with Tom and me.  Sometimes the answer is “yes”, but more often than not the answer is “no”.  Matt loves water – always has.  So why would he not want to get in the hot tub?  Very simply, Matt is very sensitive to environmental stimuli.  Included in this category are bright lights, loud sounds, strong odors, certain textures,certain tastes, and drastic temperature changes.  At one point, when he was very young, all of these stimuli played a major role in his everyday life.  Over the years he became more interactive with his environment and slowly some environmental factors became acceptable.  This was an area of learning that Matt decided to tackle in his own time with only gentle encouragement from the sidelines.  The hot tub has been a real challenge for him. We have had our hot tub for many, many years.  He was always asked to join us and we got use to the same reply of  “no thanks” over the years.  Then one day, much to our surprise, Matt replied “yes”.  He hunted for his swimsuit and grabbed a towel.  As we walked the deck toward the hot tub I noticed Matt’s gait. He was marching – a man on a mission. I could see the determination on his face.  He really wanted to tackle this obstacle.  Tom took the cover off and as he did we could see the trapped steam roll upward.  Matt’s face changed.  He looked worried.  I got in knowing he was watching my every move – watching for signs of burning and pain. “Oh, this feels good” as stated as I sunk into the water.  “It’s OK, Matt” I coaxed, “Just take itslow”. Matt stepped a foot in and simultaneously emitted a hiss.  He sat on the side struggling with the idea of submitting another foot to the heat.  He had gotten this far before in previous attempts.  In each of those attempts the heat was too much and he had to call it quits, retreating to house.  I waited. If Matt were to back out it would show on his face.  The look of failure in his eyes was always heartbreaking.  This time I could see his face was a mixture of emotion. Yes, I could see fear, but I also saw determination.  Matt brought his other foot over the side and into the water.  Another hiss as he breathed in.  Matt had just gone further than any previous attempt. “If you wait a few seconds you’ll get used to the temperature and then it will feel good.” I said as I moved closer to him.  He waited. Tom coached Matt from behind, I coached Matt from the front, but it was Matt who made the decision to slide in a bit more.  He managed to get both thighs in the water. Would he sit?  Would he declare he was done?  Tom and I watched on, both of us holding our breath.  Matt slowly slid into the water and sat on the seat. “It’s hot” Matt stated matter-of-fact. Tom got in behind him, making the same hissing sounds and facial expressions Matt had just performed.  Tom wasn’t trying to mimic Matt – he actually felt the same body-shock as Matt. It’s interesting to note that Matt glanced at Tom for just a second.  Matt’s focus was intently on his own body and maintaining his position in the water.  I could see he was still forcing himself to stay beneath the surface. Matt was in.  We were in.  We all sat for a moment and then asked Matt if he would like us to turn on the water jets.  “Yes!” he replied as he nodded his head.  Matt was beginning to feel confident.  His body was getting use to the water.  The expression on his face was more relaxed.  We turned on the jets. Matt first experimented with the feel of the current on his hands, and then positioned his body so the water would hit his back.  He was actually beginning to enjoy the experience. We talked a while – about little things mostly;  the trees, the clouds, the cat coming to join us (walking the perimeter on the rim of the tub).  When we got out Matt hurriedly grabbed his towel and headed for the house.  His walk said it all – he was now a Master Hot-tubber! It’s such a slow process to overcome the challenges of autism.  Each simple move forward isn’t just a happy day for parents; it’s a joyous day for the autistic individual too.  Don’t think for one moment that an autistic person doesn’t know when they have beaten one of the challenges.  I’m betting Matt keeps a mental list of simple challenges to be met head on.  I can see it on his face, in his body language, and hear it in his speech.  A simple thing like getting into a hot tub is not a simple thing to the autistic individual with hypersensitivity to environmental stimuli.  Matt had to force himself to feel the pain of hot water. He had to resist the overwhelming urge to pull out.  He subjected himself to this environment because not getting in made him different.  Matt hates being looked upon as different.  So he took up the challenge, faced it head on, and walked away a champion. How can anyone not admire the fortitude it takes to do what he does almost every day of his life? blogtoplist webbhotell

We were on our way to town and Matt had only been up and moving for about an hour.� "Did you brush your teeth"? I asked.� "Um, yes!" he replied as he headed down the hall.� "Did you put on deodorant?" I asked.� "Um . .." he turned on a dime and headed straight for his bathroom.� Sometimes Matt needs a little reminder when it comes to personal hygiene.� A little reminder is nothing if you could have seen the early years. Teaching an autistic child to brush their teeth, comb their hair, take a shower, put on deodorant, and for males, shave, are all an adventure in persuasion techniques.� Let's start with brushing teeth.� Parents brush a child's teeth for them until they can take the reins and do it themselves.� An autistic child has obstacles to overcome that other children do not.� The taste.� The feel of the bristles.� The gag reflex.� We were lucky in that the taste wasn't too bad.� Matt started trying different candies including candy canes at Christmas.�Toothpaste with the same mint flavor was tolerated well whereas the backing soda brands were simply a waste of time and money.� As for bristles, we started with a very soft toothbrush and had him explore the feel on his teeth at his own speed - a slow, timid sweep across the teeth, then another, and another.� The back teeth caused a gag reflex and he had difficulty overcoming his fear.� I worried myself sick thinking about all the cavities he would have because his teeth were not getting the proper brushing.�It was time to see a dentist. The first dentist trip was a complete disaster.� Matt, 4 years old, refused to sit in the chair and once I got him to actually get in the chair, refused to open his mouth. The dentist never saw Matt's teeth.� I decided to take him to a children's dentist - a specialist. I let the office know Matt was autistic.� At that time most people had never heard of autism and I simply followed my statement with and short explanation of what autism was.� The weeks prior to the visit we practiced opening his mouth on command. "Can I see those pretty teeth?" I asked.� After several attempts he would smile.� "Can I see those pretty back teeth?" I ventured a little further.� Matt would open his mouth to show me.� It sounds simple.� It sounds like a nice smooth transition - but it took more perseverance than you think. It took weeks of practice just to get him to open his mouth and let me see.� It took bribes of cookies and candy and toys.�It required a bit of tickling and laughing and a lot of patience.� Matt's dental exam with a pediatric dentist lasted all of 5 minutes.� The dentist got a quick look, but that was all.� I continued to worry about his teeth. I finally decided I would take Matt to my dentist.� I took both Christopher and Matt with me to my next dental appointment to meet the dentist, explore the waiting room and watch as the dentist looked at my teeth. Then I made the boys' appointments coinciding with my next visit.� Christopher and Matt were both a bit anxious come appointment day.�So was I.� Matt, hands flapping, watched as Christopher headed right in when his name was called.� If Christopher had flinched, even a little, then Matt would have fought us.� Fortunately, Christopher did exactly what he was asked to do, showing no fear. Matt willingly came back with me and watched as they looked at my teeth.� When it was Matt's turn he climbed into the chair on his own. The chair hummed as it lifted.� I caught his eyes and smiled and pointed at my teeth.� Matt understood immediately and smiled.� The dentist asked him to open up and I caught his gaze again and open my mouth real wide.� Matt again understood and responded by opening his mouth real wide.� The dentist lightly touched each tooth. We had practiced this at home.� Matt expected it and thus allowed the examination to continue.� Afterward, I took the boys to McDonald's.� Sounds a bit strange, taking them to eat after having the dentist clean their teeth, but a bribe is a bribe and Matt had been promised a treat if he allowed the dentist to look.� Besides, breaking routine at this crucial point would have been disastrous.� The next big step was changing toothbrushes. Matt never did like using a manual toothbrush.� His brushing technique needed changing and I couldn't get him to brush thoroughly with a manual toothbrush.� Then the automatic toothbrushes came on the market and that changed how well Matt brushed.� The battery-operated spin brush was a blessing.� Matt didn't mind brushing his teeth if he could use the automatic spin brush.� He finally began brushing the back teeth because the spin brush did not cause a gag reflex.� Matt didn't have a cavity until 2009, at the age of 23.� I dreaded the day he would need a cavity filled, but I didn't need to.� By then, Matt was well known at the dentist office, knew the routine and liked his dentist. I explained what would happen and gave him every single detail of the procedure.� I told him his face would feel a bit weird but that it would wear off.�On the day of the appointment I was the one that was anxious.� Matt went in when his name was called.� I watched him march through the door determined.� A few minutes later I was called for my own scheduled cleaning.� I sat in the chair straining to hear anything that resembled a fearful cry, pain,anger . . . but no sound ever erupted.� After my cleaning the dentist walked in to check my teeth. "Matt had 2 cavities filled and he's all done", he said matter of fact. �I was in shock.� Really? Already? "He needs to focus on his gums more . . ." the dentist went on. But I didn't hear him finish.� My mind was still on the fact that Matt allowed a needle in his mouth, allowed the sounds of drilling and the feel of packing a tooth with filling.� I was awe struck.� Could it really have gone that well? I met Matt in the waiting room.� He didn't look happy, but he didn't appear fearful or mad either.� Actually, he looked fascinated by the numbness of his face and that was all.�I schedule one more appointment for him to get a third tooth filled.� On our way to the car I explained to Matt that we would have to come back in a few weeks to do it again.� "Yes" he replied. There was no fear in his voice. He never even flinched.� Matt is 24 years old.�He brushes his teeth.� He sees a dentist twice a year.� It's just another routine now.� It wasn't always this way.� It used to be stressful and worrisome.�Now, taking care of his teeth only requires a simple reminder. "Matt,did you brush your teeth?"

This past week I spoke to a woman who has an autistic son.  Her son goes to Virginia Tech and is majoring in history.  He loves reading and writing papers and is doing very well. Of course he is - after all, college is all about reading and writing papers.  His memory is exceptional and exams are a breeze for him.  He is on the honor roll consistently.  I listened as she told me all these things and found myself excited for her.  Yet underneath my excitement I felt something else too. I felt myself getting anxious – my heart even raced a bit.  I felt a few pangs of sadness. It haunted me to the point where I wanted to put our conversation out of my mind.  Unfortunately, I found it to be quite impossible to forget. Instead, I ended up thinking about her son all weekend and wishing terribly that my son was engaged in college activity. Don’t get me wrong, I was truly happy for her and her son.  But to be honest, I couldn’t help but wish Matt was at Tech, learning, exploring, and making new friends. I hate to admit it, but I think my sadness was intricately tied to another emotion - jealousy. Matt wants so badly to go to Virginia Tech.  He wants to be a part of the college crowd and take in the feel of the campus and campus life. Unfortunately, Matt hates to write papers and he absolutely hates being tested – on anything. To be at VT he would need a facilitator – a very good one. Someone who could focus him and make him feel comfortable during exams.They would need to have a great deal of patience and  provide him with alternative explanations for each lecture.  Matt’s ability to both socialize and learn is very fragile.  If I could be his facilitator I would.  But it isn't as simple as that. Matt needs more time to become his own person. This means he can not fulfill his dreams – at least not yet.  This is what makes me sad and yes, a bit jealous. ASD (Autism Spectrum Disorder) means that his autism lies somewhere on the vast spectrum between mild and severe.  It means that his skills are not the same as other autistic individuals, nor are his weaknesses.  Matt is unique in his combination.  Each individual on the spectrum is also unique – in their behaviors, their skills, their personalities and their weaknesses.  This also means that each of us who cares for someone with autism deals with different challenges and different circumstances.  What we all have incommon is our desire that our specific child will excel in their life activities and continually overcome the hurdles placed before them, especially those associated with autism. Who has not heard of Temple Grandin?  Don’t we all want our autistic children to shine in similar fashion to Ms. Grandin? Don’t we all want them to go above and beyond the suspected limitations that were presented to us so coldly by the medical professionals upon diagnosis?  I don’t know how everyone else feels, only how I feel. I don’t know what everyone else can do for their child, only what I can do for mine.  I can’t push Matt too hard and I can’t give up on him either. I know his capabilities but I also know his weaknesses.  I’ve seen what happens if I push too hard or push him in a direction he is unprepared for.  He regresses. He burrows inward away from the stress. This is how Matt copes.  I can’t bear to watch him regress and so I take it slow, very slow. And then I hear about a young man Matt’s age and how well he is doing in college and I wonder if I have done something wrong.  Have I gone too slowly with Matt?  Have I really kept his best interests at heart?   Where would Matt be now if I were a better mother, a better teacher, a better advocate? I am happy for that mother and her family and proud of her son at Virginia Tech.  I am also a bit jealous – of her, her child, Temple Grandin and other high achieving autistic individuals.  Not because they are any better than my son Matt. No. No. I’ve done a lot of soul searching this weekend and have found my sadness and my jealousy actually stems from her confidence - she seemed so sure of her son’s future.  She knows her son will be fine on his one day because he can handle college life and college-level stress.  I, however, am not certain of my own son’s future.  What will happen down the road?  Will he live on his own?  Will he be able to handle the stress of life without me as his shield?  These are the things I fear and struggle with each day. It isn’t how far one goes in their education, but how well one can deal with everyday stress.  In the final analysis I find it isn’t so much jealousy as it is simple fear.  Hearing about the success of another gives me hope (as well it should), but it also reminds me of how far we have yet to go to secure Matt’s future.  Matt may be high functioning but he is still autistic. What do I really, truly want for my son? When it comes right down to it, I want him to be happy. Matt isn’t in college right now.  He isn’t dealing with deadlines, exams, peer pressure or reading assignments.  He doesn’t use an alarm clock or punch a time clock. Presently, Matt is . . .happy.  After thinking on this for several days I have finally found peace within myself. Matt is happy, and that means I have exactly what I want.

Thursday, February 4, 2010 Life before autism Let's face it, autism isn't something that a child shows signs of at birth. It sneaks in and robs a child of their future potential like a thief in the night. Matt was happy. He laughed, he chased the cat, he made eye-contact. He was a healthy, happy little munchkin, and I had no clue how our lives would change in the coming months. He was born during a blizzard, a month premature, by emergency C-section. The ultrasound showed distress, and upon opening me up the doctor discovered the umbilical cord wrapped around his neck, choking him. The quickness of the surgery saved him from the claws of infant death. I had been a very nervous expectant mom because I had lost a child the year before - another boy, premature, also delivered by emergency C-section. I clearly remember telling God I would handle anything if this little boy was allowed to live. Did I set myself up for a test or what? Matt came home to all the fanfare that newborn babies are greeted with - proud daddy, proud brother, curious pets. His first year pretty uneventful as far as signs or symptoms are concerned. Somewhere after the first year he said "kitty" as he would gleefully chase our cat. Then, the thief crept in. Small signs at first - avoiding my gaze, "kitty" was never chased again, even the word stopped being uttered. I would find him hiding behind furniture, rocking back and forth. What happened? Could it have been vaccines? It occurred close to that interval, but the jury is still out on a relationship between vaccines and autism. As a mother, show me an autistic child who has never been vaccinated and I will stop wondering. As a scientist, let's keep looking at all possibilities. For now, I want to avoid that argument because this is his story and his successes and blame has no place here. My son stopped communicating verbally and began communicating with gesture. If you have an autistic child, then you know what I mean. My "test" had begun.

Starting on a Good Note O.K., let's get the basics out of the way . . . Who am I? Well, I am a scientist and an educator and a mother of four, one who happens to be autistic. As a scientist, I observe phenomena, form hypotheses, test, and use what I have learned to either continue in the same direction or throw out the hypothesis and start again. As an educator, I teach others what I know and facilitate their learning of complex issues. As the mother of an autistic son,my most important job in this life is to make his better. So, let's start the conversation on a high note. Although I have watched all my children graduate - from high schools and colleges, (and of course I was the proud mama for each), I was especially thrilled to witness Matt walk across that graduation stage.  He shook hands with the principal and received his diploma. He looked pretty sharp in his black robes and gold honor cords and he knew it.  His smile, the proud way he carried himself, the regal poses for pictures, all told of a young man triumphant. Those gold honor cords Matt wore around his neck distinguishing him as a honor student.  Matt graduated number 4 in his class. Yep, let me say that again (because it feels really good), Matt graduated number 4 in his class! Matt has dreams of being a comic book artist and living on his own. He is now 24 years old, takes college –level courses (one course at a time) and is learning self sufficiency. It’s a slow process– but we really have no deadline. It has been a long, hard road to this point. It didn't happen over night, and yet, now it feels like it was only amoment ago. I certainly didn't do it alone (I’m not a superhero), and Matt didn't do it alone (we have so many to thank over the years).  I observed so much over the years that went against the dogma of the time that I soon found myself saying“I should write a book”. Writing is not a simple process and the subject matter can be painful at times,but parents, teachers, and anyone who interacts with an autistic person should know certain things. So, here we are.  The stories are true and inspirational.  Teaching an autistic child can be done, it is not all doom and gloom, and the simplest of steps will lead to big things. I have witnessed real progress in all areas of social ability and communication in my son that most thought were impossible - and we did it without expensive therapies or medications. Matt was diagnosed in 1988. He was only 2 ½ years old.  At that time, autism was thought to be a rare disorder, only a 1:10,000 chance.  There were only a few archaic studies published, no books on the subject for parents, and no Internet. In dealing with each autistic behavior we had to learn simply by trial and error.  This is not a “How to” book, just stories highlighting moments of enlightenment – moments that could be missed if one is not watching and learning. My purpose for writing these stories is a simple one - I merely hope they will help you connect better with the autistic person in your own life.  I hope that as you read you will come to see the world as an autistic child sees the world. Come with me as I reveal Matt’s journey, his bravery, his story – see the World According to Matt. You can see all my blogs click here

Revelations come to us at various times while parenting.  We haven't a "how to" manual and thus as a parent of an autistic young man I realize that I have made my share of mistakes.  I also know that once I acknowledge those mistakes I can change -  when ever I need to.  Yes, I can learn from the past and move forward, but sometimes I need a bit of courage.  I need that bit of courage to change things up - try something new, be willing to rock the boat if needed.  I have a courageous son that shows me how to do it in everything he does.  I hope to live up to the high standard of being this young man's mom and so I gather my courage and prepare to change things up.  A particular revelation came to me as I contemplated the recent events of the past week.  A revelation that now pushes me to rock the boat. I recently had a friend visit me for a whole week. It was a great experience for me as I hadn't seen my friend in many, many years. We live almost 1000 miles apart and that means visits are a rarity. Although we talk often on the phone our last actual face-to-face visit was at least 7-10 years ago. I (and family) saw her last in Illinois. This time she came down to Virginia. Matt does not remember Carol, my friend of 42 years. He lost all his childhood memories as he went through puberty and doesn't remember playing at her house, going out to dinner, etc., so I talked with him about her impending visit several times to prepare him for what would be a very big change in his daily routine. They pulled in last Saturday and Matt welcomed them (Carol brought her friend Larry) without hesitation.....then proceeded to his game room where he stayed most of the time. Carol is an early-to-bed, early-to-rise kind of person and Matt a late-to-bed, late-to-rise kind of guy. Thus, with opposite schedules Matt was only subjected to the noise, commotion and general chaos of the house for about 5 hours a day. Still, I could tell those 5 little hours a day were pretty hard on him. Tough as it may have been, he never once complained. As usual I watched his mannerisms and gestures and body language and enough silent communication was provided to know the poor guy was feeling stressed. His one moment of excitement was when he was about to go for a drive in Larry's beautiful new copperhead pearl painted 2013 truck. After 10 minutes of riding in the back seat next to me I noticed Matt's face had dropped - he was disappointed by Larry's driving. It wasn't that Larry was a bad driver - he was a cautious driver; braking on every single curve, driving under the speed limit by 10-15 mph, constantly wondering aloud if we were lost (which Matt knew was just not true). But hey, this is Virginia and those of us who live here have been driving those curvy roads for years. Illinois is flat, roads are generally straight - big, big difference. But I could see Matt was getting quite frustrated.  The “joy ride” turned out to be just more stress. The week flew by - as vacations always do - and upon waking on Friday to find them gone, the house back to normal, and his old routine again made available to him, Matt arose jubilant. His step was light and quick, his smile radiant, his voice was resonating a happy tone. Life was again, good. There are 3 things I wish to share with you about this past week's experiences. The first is to again point out just how far he has come - allowing strangers to be around him without meltdown, no show of defiance or anger, no sour disposition. Only one rude comment (as Larry was driving and Matt's frustration peaked he stated - "Larry, you've got to start using your brains!" I took Matt's hand and quietly told him that comment was inappropriate. It wasn't something one said to a guest.  Matt has told this to me before and it's his way of saying, "idiot" - but not meant in a mean way.... All in all, I thought he did wonderfully finding his own way to deal with all the new environmental stressors. Understanding his stress level was high I didn't push him to interact very often. Then again, I didn't have to. My friend stepped into his life without prompting. She stepped into the world of his game room and initiated conversations. She spoke with him as a young man with wants, thoughts and feelings. Matt replied, interacted, and was polite. My friend made the first move - knowing that Matt can not initiate social interaction. She accepted him for who he is and went to him. I was impressed by her ability to get him to respond – just as natural as could be. And that brings me to the second thing I wanted to share with you - I had an epiphany while watching them interact. I know that no matter how old Matt gets he will ALWAYS have trouble interacting on a social level. Of course he will - Matt is moderate / severely autistic and that FACT will never change. What I find most amazing is my autistic son has more acceptance of other people's lack of communication skills than they have of his. It all came together as Matt and I were driving to town yesterday and Matt said, "Ahh, Larry is a terrible driver. He needed to use his brains. Just terrible- and he can't navigate very well." Out of the mouth of babes.... the truth as Matt saw it. Larry did have trouble driving. He's almost 70 years old and his vision isn't what it used to be. He was driving on curvy roads where he knew no landmarks, on unfamiliar mountains and down unfamiliar valleys.  I explained all this to Matt.  Matt nodded his head solemnly - he understood. Matt’s expression of  “Poor Larry” said it all. He had accepted Larry's disability (his inability to drive on curvy roads) almost immediately after the explanation. Don't you wish neurotypical people could manage the same thing of autism? Has it hit you yet? Do you see what is so amazing? Acceptance of a person with autism means accepting who they are - right here, right now. It means understanding there is stress, there is bewilderment, that everything you take for granted in your understanding of life is very frustrating and confusing for them. Acceptance means initiating the conversation. It means not overstepping their boundaries. It means having the GUTS to step out of YOUR own comfort zone to initiate a conversation and keep it going. Isn't it strange that Matt can accept people who do not act as he thinks they should, fairly easily and yet it's not like that in reverse. Normal people are not that accepting of those with autism. Too many people never make that communication attempt. Yes, that includes relatives and a few friends that are so uncomfortable with the thought of autism and so afraid of the communication differences that their only interaction with this wonderful young man is a "Hi Matt". I stopped trying to force them to accept my son long ago, but I haven't been able to give up on the idea of joint social interaction. As frustrating as it has been I still try to encourage an interaction...... but as the years go by I am realizing something profound- that it is very difficult for most people to initiate a conversation and keep it going if they don't get the feedback they want. They say their required "hi" and then ignore that he is even around. As if he did not exist - unless he approaches them (which he never will). It makes me want to scream: NEWS FLASH!!!! Matt is autistic! So I had an epiphany in realizing that the problem with the communication is not so much about my autistic son as it is about those that think they are "normal". Those that seem to have no problem speaking to other people  ..... until Matt is around. Why is it that these normally vivacious, outgoing, loving people can not communicate to save their lives when around my autistic son? Why can they not initiate a conversation? Why is Matt just seen but not heard? Is it really that hard? Which brings me to the third (and last) important item I wanted to share - my own guilt.  I have allowed the lack of interaction and the lack of communication – yes, it is my fault.  I have always allowed Matt to go off by himself while I interacted with family and friends.  I would do the socially acceptable dance of immersing in conversation while my son – my wonderful, accepting son, sat by himself content to play a game or watch TV.  I didn’t push.  I didn’t make a scene or stop the presses.  I just allowed the time to progress knowing full well that Matt was missing out.  Why?  Why do people conform to the socially acceptable behavior and sit quietly in the boat when every aspect of their being is screaming to not only rock that boat but tip it plum over?  It's about damn time I tipped the boat over. I am ashamed of myself for the last time.  I will no longer sit quietly while my son endures another get-together where he is left out.  Maybe I am getting stronger.  Maybe I have learned enough to know what is right and what is not.  Maybe I have finally found my own courage.  What ever it is I needed that kick in the pants.  I can not expect others to learn from me if I haven’t the courage to teach them.  I have made up my mind that where ever Matt goes you will find me also.  If he is relegated to watching TV or playing a video at another’s house then I will be there too.  I will initiate the conversation just like at home and I hope I will demonstrate to all those neurotypical people that I love so much but who are afraid of conversing with an autistic young man, just how it’s done. I am seeing – really seeing for the first time - that the social interaction and communication deficit is more of a disability for the "normal" person than it is for my son. If Matt can accept a person's differences and still attempt to communicate the best he can (mostly non-verbal) and still wish to be included then he should be allowed the same respect. Over the years I have found many people will say they "understand" autism but then never so much as attempt to interact or reach out. They are afraid.  It isn’t understanding – it's avoidance. So I have my work cut out for me as I use my new-found courage to rock the boat.  It seems to me that what’s missing in our attempts to teach social skills and communication to our autistic children we forget that we also need to teach these same skills to those who are neurotypical.  If I am going to be successful in gaining autism acceptance for my son then I will need to first teach those without autism HOW to communicate and I must do it by example. It's not a matter of them knowing about my son’s communication disability....after all, autism is just a word.  It's a matter of acceptance of autism.....of who he really is.  Matt is a real person with all the feelings, thoughts, ideas and dreams as any other human being.  It’s something I am afraid others will never realize if they are too uncomfortable to simply sit and talk with him. Desperate times call for desperate measures . . . . forget rocking the boat - it's time to tip the boat over.

When enough is enough – a simple rainy day pushes the limits of endurance. It was a day to remember – the annual home game at Virginia Tech.  It was a close battle on the field, and an even bigger battle in the stands as my severe to moderate autistic son pushed the envelope of his own endurance. I watched as he fought against the sensory stimulation induced by the feel of rain and I watched helplessly as the stimulation tripped his overload switch.  For many autistic people too much sensory stimulation can overload their ability to process – things such as loud noises, strong smells, bright lights and certain textures - are just too much to bear. Sometimes, a parent can intervene and help them fight (by providing headphones,sunglasses, and gloves) and on occasion, when all else fails, we simply need to remove them from the stimulus altogether. On game day this year I watched as Matt fought an epic personal battle against the onslaught of environmental stimulation of epic proportions. His personal endurance was forced right up to the edge of the cliff and only his determination to endure kept him from going over that edge. It was a day which again reminded me just how much autism affects his everyday life and even simple pleasures. Matt is 27 years old and has loved Virginia Tech for at least 20 of those years.  He decorates his rooms in maroon and orange, wears a VT t-shirt, VT sandals and a VT hat almost daily, and even has a VT couch (orange and maroon with the VT emblem) in his game room.  My husband and I take him to1 home game every year and Matt’s excitement about the upcoming event permeates our home for months prior. For the big event this year he requested the tickets for the battle against Marshall in late September.  Matt has over 30 different t-shirts with Virginia Tech or Hokies emblem on them but for the epic battle this year he had to purchase another one – to wear only on game day.  For over a month he marked an X through each day on his calendar leading up to his big day and made sure to remind me just how many more days we had to wait.  A week before the scheduled day the forcast predicted rain for game day – it was my “heads-up” warning to be prepared. Game day arrived along with ominous grey clouds overhead.  We were not deterred from our mission though and proceeded to dress in the home-team colors, grab our rain gear and headed out the door - a few misting drops started to fall. It looked like the weather prediction may be correct - a chance of intermittent storms all day.  I focused on the "intermittent" part. We parked in our usual spot – a good distance from the stadium but one in which the walk took us past all the revered sights across campus.  This was our routine each year – and we couldn’t deviate from the routine - not without good cause.  A few sprinkles of rain were not considered "good cause".  As expected, Matt began snapping picture after picture as soon as his feet hit the pavement.  He loved taking pictures of his favorite buildings and pathways which marked the beauty of the VirginiaTech campus - his visual record of his favorite place in the whole world. The mist morphed to drizzle and we walked on. Matt wore a VT jacket with a hood as protection against the rain that fell, but his hood stayed down – his beloved VT hat protected his head.  I had made sure that morning that he was covered head to ankle (his toes were exposed due to his insistence on wearing his VT sandals) and was fairly confident he was well covered and protected against the elements, but just in case we brought along our rain gear (plastic capes).  Unfortunately, Matt hates wearing the rain capes - he hates the feel of plastic on his skin - and umbrellas are not allowed in the stadium.  His jacket would have to do.  At first, the light rain didn’t seem to bother him as he kept to his usual routine of snapping pictures while we walked across the campus, but as we neared the halfway point the rain started to come a bit faster and in response Matt put away his camera and quickened his pace. Once inside the stadium we shook off the dampness of our coats and purposefully took our time getting to our seats, staying under the overhang as long as possible before returning to the open air and the elements.  A small break in the clouds would have felt like heaven by then but instead as we walked up the stadium stairs toward our seats the sky grew darker and the rain continued to fall.  We laid a sweatshirt over the wet cement bench and sat down. I glanced at Matt – he seemed oblivious to the rain and instead seemed focused on where he was and the game before him – his smiled had not been dimmed by the dampness I knew he felt.  As I looked at my son I thought, "Good. You can do this Matt, I just know you can". The game began . . . and the rain fell harder. I put on my rain gear, Tom put on his rain gear and Matt pulled his hood over his hat.  I asked him to zip his jacket and he did so hurriedly – not because he was getting wet but because he wanted to keep his eyes on the field as he might miss something important – like what the Hokie Bird mascot was up to.  Each quarter came and went and the rain continued.  Minute after minute, hour after hour, it just kept raining.  It fell hard at times and less at others but the rain never let up. The game was neck and neck and Matt’s focus seemed to be on the field, the players, the score and keeping track of where the Hokie Bird was at all times - that was during the first half.  As for the weather, he appeared to be handling the rain fairly well. It wasn’t until the half-time break when I noticed the cracks in his armor.  When we were under the shelter and out of the rain Matt suddenly shook his hands violently in an “I can’t stand it!” motion.  Tom and I instinctively handed him some paper towels, which he took gratefully, and immediately used them to cover and wipe his hands over and over – as if he couldn’t dry his hands fast enough.  His spirits were still high, but not as high as they had been…. the feeling of being wet and damp was starting to crack his armor of determination - the rain was starting to get to him. We stood under the shelter of the breezeway and ate our lunch- hotdogs that were too over-cooked and way too over-priced.  Matt had looked forward to it all morning but now he seemed distant.  He ate his hotdog– but there was no enthusiasm in it – not like in previous years.  These were stadium hot dogs and therefore a special Hokie treat for him – but he ate it like it was a chore.    I knew he was uncomfortable, pushing his limits,and we delayed going back to our seats as long as we could.   “You ready to go back Matt?”  I asked. “Yes.” He replied – not excited, not happy, just resigned to go back to the uncomfortable exposure to the elements - something which must be endured in order to watch his favorite team play from the seats in his favorite stadium.  So back we went . . . back for the second half . . . and an even harder rain. We endured by focusing on the play by play on the field, by cheering, grunting at fumbles, and chanting the H-O-K-I-E at each touchdown.  The opposing team was a force to be reckoned with and the atmosphere stayed tense and exciting - the perfect football game.  Unfortunately, it was not the perfect weather.  Although my son appeared to be fully engaged in the events on the field I knew that deep down he was really fighting against the feel of the rain and fighting the urge to leave. After hours and hours of continual rain I knew his limits were being pushed.  The rain had by now seeped down onto his shirt, soaked his jeans, and was steadily dripping off his hood onto his face.  His feet must have been ice cold and through it all he appeared outwardly to be fine. In reality he was overloading and fighting to remain calm.  The game was almost over – he watched the clock…..could he make it?  Then in an upset the score tied and the game went into overtime. Matt had set a limit, had forced himself  to stay until the clock ran out on the forth quarter, and when the game went into overtime you could see he had not planned for that. He had taken all he could - almost five hours of it- and he just couldn’t  take anymore.  Enough was enough. “I need to go now.” He said urgently to Tom.  Tom looked at me in shock and whispered, “Matt said he needs to go!” “OK, then we go.”  I replied and started to grab my things. “But we’re tied and in overtime!” Tom said bewildered. “Yep, but if Matt said he needs to go now, then he must REALLY need to go.”  I said looking into Tom’s eyes and giving him the “think about it” look.  It clicked – I saw it on Tom’s face.  He understood we were on the brink of an emergency situation – Matt’s body was going into overload – too much rain, too much wet, too much cold, his body just couldn’t do it any longer.  We had to leave – right now!  As we stood to leave the sky darkened even more and the real storm moved in.  It poured buckets, drenching us in seconds.  Rain- hard, cold streams of rain now assaulted my son and there was absolutely nothing I could do to stop it.  Tom took off his rain cape in an attempt to protect Matt from the downpour, but Matt -on the edge of overload - could not accept it.  For Matt,  wearing rain  gear would just add insult to injury and he politely refused.  I took off my sweatshirt from underneath my rain cape and gave it to Matt to use as a makeshift umbrella, which he gladly took and put over his head.  As we walked we heard the play by play of the game continue on – VT was in their second overtime. It was a very, very long walk back to the car.  Every step was purposeful and not quite fast enough.  Up a hill, down a flight of stairs, round a bend and down another flight of stairs – the path back seemed never ending – and the rain came down even harder.  By the time we got to the car we were thoroughly drenched.  Matt had been quiet the whole way –never said a word, never took a picture and never smiled.  It was all he could do to just keep moving.  My son was withdrawing … shades of his earlier years of autism and a protective measure when things got to be too much - and this was one of those times.  I recognized it immediately even though he had not resorted to this behavior in over 15 years. Once we were inside the vehicle Tom turned on the heat and the radio – the announcer was overjoyed, exclaiming VT had won in their third overtime!  Matt smiled, “Yes!” he said softly.  His favorite team had won and although he was physically miserable, he was happy.  His withdrawal ended. I tried to keep him engaged while we rode home; trying my best to keep his mind on something, anything other than the cold and wet that enveloped his body.  An hour later we were home and got out of the car walking in the rain one last time as we headed for the door.  Matt went straight in, changed his clothes and lay down on his couch, covering himself with a blanket.  Minutes later he was asleep. He had done all he could do and it had worn him out, both physically and mentally.  Mother Nature had thrown all the rain it could at him and he had endured. This was a story of endurance, of a young man with autism who set his mind to taking whatever the weather handed out and pushing the limits of his own stamina.  Every atom of his being must have been screaming at him to leave- this was his much loved yearly game, one that went into 3 over-times and was truly a fingernail-biting showdown between equally matched titans. For Matt to have to leave before the end meant he had hit the wall.  He did what he could and left when enough was enough.  But don’t focus on the fact that he had to go before it was over . . . . No, that would be missing the point entirely.  Focus instead on the amount of time he stayed – the over four hours of unrelenting rain, and the amount of difficulty he must have endured. Over four hours of rain, rain and harder rain….. Four hours!  He met it head on with determination and quiet resolve and inner strength. The experience of that day highlights the reality of sensory processing difficulties and shows just how far my son has come over the years, because you see, Matt never out grew tactile sensitivity – he’s battled it all his life.  Its knowing this that begs the question, “How was he able to make it that long under those conditions?”  Matt has learned over the years to push himself in all things, to endure and not let the uncomfortable stimuli take control his body or his life. It’s not something I taught him….it’s something he has always had within him.  Pushing the envelope – that’s who he is, that's how he endures, and that’s how he manages to still have a life with simple pleasures regardless of the obstacles autism throws his way. I know my son is not alone.  Many autistic people fight against the environment every day and no one sees, no one knows, because on the outside they appear calm. They have learned how to endure the assaults on their senses that occur daily – something we can’t even imagine -and most, like my son, do it with dignity and quiet grace. Its experiences like these that always strike the heart of my very being.  Matt has endured more in his short life on a daily basis than most people will ever have to deal with in their entire lives . . . and that makes him the bravest soul I will ever know.

Matt just attended the Labor Day Flea Market.  He just walked about, seeking just  the right find . . . just another bargain hunter in a sea of people that stretched from one end of town to the other . . . just one person of the 500,000 people who attended this year’s event . . . except, there was no “just” in any of it. Matt is 27 and moderate to severely autistic and mostly non-verbal.  And yet, he walked alone.  He bought some items that made him happy.  He blended in.  No one knew and no one needed to.  Matt was able to experience independence like never before. Just another day at the flea market - except it wasn't. Many people think autism is a just a communication and social interaction disorder.  For those individuals like my son Matt, autism is so much more than that.  Matt was diagnosed with autism so severe the professionals recommended institutionalization.  Basically, he was thought to be beyond my reach.  Little did his doctors realize just what this mom can do when she is put in such a position (one that many parents like me now know all too well) or about the indomitable spirit of those afflicted with autism. Over the years I knew his difficulties in social interaction arose out of his difficulties in communication - after all, one affects the other.  When my son, Matt, was just a toddler he kept to himself and never spoke a word but over the years I learned his non-verbal  language and he learned mine.  In the early years Matt feared even small gatherings of people.  He maintained a personal space that was much larger than most people’s, had melt downs, and cried when it got to be too much – but we never stopped trying. Little by little, year by year,  Matt accepted more and more people into his inner circle and even began to enjoy  their company.  There were always sporting events, picnics, fairs and flea markets – each which garnered large gatherings of people and year by year Matt was exposed to all of them. One event, the annual Labor Day Flea-Market, held in my husband’s home town of Hillsville, brought a massive sea of people together. They came from all over - vendor and bargain hunter alike - and it swelled over the years to encompass the entire town. The flea market has always been a big event for our small family and in spite of the crowds we took Matt.  We were mindful of his discomfort in those early years and usually carried him through the crowds on our backs or shoulders.  Matt eventually grew too heavy for carrying on my back and at some point he had to walk along side me holding my hand.  To entice him to go without a fuss we would bribe him with the promise of buying him a train and our entire family group kept an eye out for anything railroad related that could bring a smile to my youngest son’s face - anything to make the overwhelming nature of the flea market worth the over-stimulation. Year after year we went until one year we noticed Matt was eager to go. It just got better from there. We’ve been going to the Labor Day Flea Market now for over 20 years.  The week before this year's gathering I asked Matt if he would like to walk the flea market on his own – he beamed.  He could barely believe it.  This would be the year that he was finally allowed to walk alone, shop alone, go where he wanted to go, and just blend in.  That feeling of freedom must have been immense. I knew in my gut it was time and that he was ready.  I knew because I had prepared him for such things.  Matt had experienced shopping in stores alone for years now.  He goes one direction as I go another and when it comes time to go I call him on his cell phone. He also has experience purchasing items by himself, be it food or music, toys or clothes.  And Matt was excellent about knowing where he was at all times – as if he carried a map in his head (I am convinced my son has built in GPS). So I knew my son was ready because of practice – years and years of practice. The big question really, was I?  Was I ready to let go - even for 90 minutes - in a crowd so large? My son is also a man now.  A man that will soon live on his own – something unheard of in the autism community for someone on the moderate / severe end of the spectrum. It’s been a long awaited goal, practiced for since long before his high school graduation.  His determination drove my determination and together we knew he was ready to experience independence.  His name is currently on the waiting list for an apartment and we are just waiting for THE CALL - the call that will initiated the biggest move of my son’s life . . . and of mine. It’s been an exciting and yet scary year (exciting for Matt, scary for me). So yes, I knew Matt could walk the flea market alone (or I never would have asked him if he wanted to) because I knew in my heart he could.  But that does not mean I wasn’t scared.  Sometimes, this mom just needs to let go and have some faith.  This was one of those times. All summer long Matt reminded me how many days until the flea market on Labor Day weekend.  When I announced last week that he could walk it on his own his joy was overflowing.  To prepare him for the big day I took him shopping to buy him a new watch. Then we made sure his cell phone was charged.  Finally, we set a plan in motion of when to meet, how often to call, what to do if someone was mean to him (call me or get a cop).  I handed him his allowance for the day and off we went on a new and exciting adventure. Our first stop was to see grandma, who was recovering from surgery in a rehab center one town over from the flea market.  Unfortunately, while visiting her a severe storm warning came across the news and the skies turned black.  The rain fell in buckets and the wind bent trees just outside grandma’s window.  My heart sank.  I looked at Matt.  His heart was sinking too. My step daughter, Sarah, and her husband Paul had stopped by also.  Paul pulled out his smart phone and looked up the weather map.  Matt leaned in to examine the situation.  When we left I tried to convince my son it would be OK to go another day, but he wasn’t buying it.  As we drove out of town the rain lessened and Matt pointed skyward and exclaimed, “It’s going away!” “But another storm is coming, Matt.  You saw it on Paul’s phone, remember?”  I replied. “I see a fragment of blue!” he exclaimed and put his thumb and forefinger an inch apart as a measure of the blue and then thrust his measured hope at my face exclaiming, “A fragment!” “But what if it rains while we are there?”  I asked tentatively. “Duh . . . umbrella!” He said disgustedly. OK, so I had an umbrella in the back of the jeep. With each mile I drove toward home (and away from the flea market) Matt’s frustration escalated.  His frustration could not be contained a second longer and suddenly he smacked his thigh 4 times with the palm of his hand- pop, pop, pop, pop. Those pops meant his hopes of going it alone at the flea market were being dashed – and I was the cause. What was wrong with me?  Was I avoiding it for other reasons?  Was I …. Scared?   Shouldn’t I at least try to be as brave as my son? I pulled into a driveway and turned the jeep around.  “I would only do this for you I’ll have you know…” I teased as we headed back toward the town of Hillsville and the hope of the massive flea market.  I looked over and smiled.  “We will at least give it a try, Matt.”  With that statement came the resurgence of hope - his face re-lit with determination, and his eyes became bright once more. The traffic headed towards town was light but the traffic headed out was bumper to bumper.  Most shoppers were leaving, not wanting to bargain hunt in the rain.  We always park in the center of town and while I easily found a place to park (because so many people had left), it had still taken us almost an hour to finally get to that spot – 45 minutes waiting in town traffic and yet his face never shown of worry or frustration – only hope.  As soon as I cut the engine off, Matt grabbed the umbrella and jumped out.  We proceeded down the hill toward the first set of booths.  His step was so quick that I found myself trying to keep up with his strides.  Excitement permeated the air around him. “Check your watch. Call me in 30 minutes, OK?  Check your cell phone.  Let’s do a check.  Call me.” I asked, as if all was great and it was just another, normal day. As if.... “OK.” He replied as he took out his phone and pressed the buttons.  My phone rang.  I opened it, “Hello?” “Hi!” he exclaimed into his phone even though we stood next to each other. “OK, we’re good. Call me at 5pm and let me know where you are, please.” I said. “Uh, Ok.” He replied. “Bye, Matt.  Have a great time.” I said looking into his bright eyes. “Bye!”  Matt replied as he gave me a fist bump, turned and walked away  - and my heart stopped. What if?  Nope – get those “what ifs” out of your head, Liz. I reprimanded myself, turned and forced my legs to walk in the opposite direction.  For 15 minutes I strolled from booth to booth trying to look at various items but not really looking at anything at all.  I was too busy forcing myself to just keep going.  I rounded a corner, looked up and there he was, only 30 yards away. He looked right at me, smiled, waved excitedly, then turned and walked away once more. Believe it or not, that was all it took to calm me down – just seeing his face, reading his body language.  Matt was just fine. It was exactly what I needed to see - my 27 year old autistic son blending in with the massive crowd, confident, happy and living a dream.  I strolled off again in a different direction, more confident and more at ease. I set to really looking at things and examining items that were appealing and I started to relax. At 5 minutes before his first call was due my phone rang.  It was my husband.  “How’s it going?” he asked immediately.  Seems he was just as nervous as I had been 10 minutes earlier.  We talked a few minutes but I knew Matt would call exactly at 5pm and we kept the conversation short.  I hung up and strolled on.  At exactly 5pm Matt rang my cell phone. “Hello.”  I said with a happy voice as if nothing out of the ordinary was occurring.  I heard “Hello!” in an even happier voice in return. “Where are you?” I asked. “I’m at the Jockey Lot”, he replied. Great!  He knew his landmarks and I felt better knowing his internal GPS was working just fine.  We made plans to call again in 30 minutes. Thirty minutes later I again got my much needed call and we planned to meet up at the top of the hill in 30 minutes more.  I made record time to the top and then suffered the wait as I searched the sea of humanity for the light colored Virginia Tech hat he always wore. When I spotted him I noted that he was in search mode, looking this way and that, trying to spot my face.  I called out and waved.  He glanced in my direction and his face immediately changed from one of worry to one of sheer joy.  My heart began to beat once more. We walked together a while, ate some ice cream and slowly strolled back down the hill toward the car, walking side by side.  He stopped only once to show me a sign for comic books and I said I would help him find it the next day.  Finally, the jeep was in sight. We both let out a sigh of relief.  I opened the trunk to put in our bags and as I set my bag down Matt looked at me and asked, “What did you get?” I stood stunned for only a moment and then told him of the blue shawl with fringe as I pulled it from the bag to display it.  “That’s really cool!” he said as he put his own bags in the trunk next to mine.  Matt had NEVER asked me what I purchased before. Not ever.  His curiosity was as genuine as his approval.  As I walked to the driver’s side door I had to fight back a happy dance (with happy tears). Matt had just asked me about something important to me…..unexpected and out of the blue.  He had just initiated a conversation!  This was so much more than just a walk around the flea market. So, in all, Matt had spent 90 minutes on his own in the largest gathering I could have possibly subjected him to.  He did so confidently.  He knew his way around, purchased some items,and strolled as a free and independent young adult.  He blended in and got to feel “normal”.  My son is 27 years old and he deserves the right to feel just as free as any other 27 year old.  His 90 minutes on his own must have felt like heaven.   He was so relaxed and so calm upon our return to the car that he even verbally initiated a conversation (first ever).  Matt doesn’t initiate conversations – at least he didn’t until that moment. I can never say that phrase again..... The hurdles we face as parents of an autistic child seem never ending and maybe they are – but as his mom I say, “so what?”  I have learned to jump the hurdles with my son and now we tackle them almost effortlessly – almost.  We may plan for the big hurdles but we focus on the small ones right in front of us – because we know if we can jump those, we can get there – we can jump anything. On Labor Day two hurdles were cleared; he was able to prove to himself that he could function well in a crowd all on his own and he initiated a conversation with me without prompting. I would say it was a very successful day. We are very hopeful for Matt’s future.  I have learned to “just” breathe. “Just” relax – knowing that I can do this - whatever this is. It “just” takes practice.  When one thing doesn’t work, I “just” try something new.  And slowly over the years I have learned to “just” let go– bit by bit.   After all, it’s “just” autism. And there’s no “just” in any of it.