The Kluge center for Children in Charlottesville, Virginia scheduled Matt for periodic visits. They were scheduled about a year apart and the purpose of these visits was to track Matt’s progress in all areas included in a skills check-list for age appropriate skills and behaviors. Matt was still not talking on his first visit back after his initial diagnosis the year before. The therapist tried to get Matt to speak. He did not comply. His only language at that time consisted of “no”, “yes”, “water”, “drink” – Matt was now 4 years old. The window for speech ability was going to close within the next year. His therapist was very concerned. Being able to say a few words is not the same as having speech. Speech is a form of communication and Matt’s communication was still mostly grunts, moans and body language. It was time to put in a back-up plan just in case the next year he remained at his present level of talking. The therapist instructed me on how to use sign-language and had me practice. Signing provided me a new way to communicate and I embraced it. I practice several signs and used them on Matt every day. He didn’t like watching my hands and had no fascination with my gestures. I slowly realized that sign-language was not going to work. Still, I kept at it. I wanted to talk to my son and I really didn’t care if it was through signing or speech. My favorite sign, and the one I used most often, was the one for “I love you”. You extend your thumb, index finger and pinky finger upward while keeping the ring and middle finger bent. Each night at bedtime I kissed Matt and said “I love you” both in words and in signing. I found it difficult to tell whether or not he made the connection. I found out later that he had been watching, listening and learning all along. Although Matt was not doing age appropriate behaviors, most of his skills were higher than average for his age. He had a few skills that were deceptively low-level, like not knowing how to use a key in a lock.  You have to look at the whole grading system to understand why he failed. You see, the lock and key test was sprung on him during his Kluge Center visit. The occupational therapist gave him a key and set the locked box in front of him. She then began timing him. He had never even seen a lock or a key, and he had no curiosity about what was in the box. After several minutes she secretively marked her grade sheet. “Did he fail?” I asked. “Well, he didn’t even attempt to open the box and never showed any curiosity.” She stated back. “Matt can do that trick” I countered, “give me the key.” She politely handed me the key, placating the hysterical parent. “Matt, watch this!” I said directly to Matt as I sat on the floor beside him. Matt watched as I put the key in the hole, turned, open the lock, opened the latch and open the box. I picked up his toy car he had brought with him and placed it in the box. I shut the lid, flipped down the latch, and put the lock back on. “Listen” I said as I clamped the lock down.  We listened.  It produced an audible “click”. Matt watched the whole sequence. His car was now in that box and the box was locked. I handed him the key. Matt put the key in the hole, turned it, open the lock and removed it, flipped the latch and opened the box to reveal his beloved possession still intact. A wonderful smile lit up his face. He was genuinely relieved and now fascinated by the lock and key. “See?” I said to the therapist. She looked at me as if I had just spit on her. “He was not able to do it without you showing him . . . “ she trailed off. She never changed her grade sheet. Matt had low scores from her and high scores from each of the other 3 therapists. This first visit back had really gotten under my skin. I was ready to use the sign language, but I was unwilling to accept that Matt lacked thinking skills. I became aware that people would judge my son on his ability using particular tests that were unintentionally misleading. People would always use his diagnosis to assume Matt was mentally incapable of learning – that is unless I made it a point to teach them differently. It was during this same year that Matt learned the alphabet without anyone knowing. I practiced the alphabet on the glass of the back door – writing in the frost. The first few weeks Matt just scraped frost onto his fingers, fascinated by the cold of the door. At school the class went over the alphabet each morning. Matt would dive under a table and put his hands to his ears as everyone did the alphabet together. His teachers assumed Matt was off in his own little world, refusing to pay attention. His teachers soon found they had made a false assumption. Matt was listening and using his split-second glances at the board to connect the letter with its name. Matt was under the table yes, but he was learning. Within weeks Matt was writing the alphabet in the frost and writing the alphabet on paper in school. His repertoire of words seemed to jump from 4 to 20 - 30 in no time at all. Matt’s brain was healing and he was beginning to show us signs that he was capable of making connections again, both figuratively and literally. He began to speak more and more. I was finally sure – absolutely positive – that he would eventually use sentences to communicate and so, I stopped using sign-language – that is except for “I love you”. To this day, 20 years later, we give the sign for “I love you” whenever we part, whenever we say good-bye, and sometimes just for the heck of it. It has become a symbol with a much deeper meaning. Each of our children knows the sign and has used it, but for Tom, Matt and I, it is part of our everyday language and behavior. A few days ago we again hiked another section of the New River Trail. Each of us had in earbuds listening to our own musical preferences on our MP3 players. I was out ahead and looked back to find Tom taking pictures – he was quite a ways back. Matt looked at me, then at Tom, then back to me and shrugged his shoulders. I held my hand up indicating stop and wait – Matt stopped. He looked again at Tom and back to me with a big smile and flashed me an “I love you”. Not a word needed to be spoken.

Story 72 Another Mother’s day has come and gone.  The kids have been kind to me.  I got flowers and cards and saw each one at some point over the weekend.  As I think back about all those previous Mother’s Day tokens of affection I think of the gifts and cards and dinners and phone calls. It’s nice having a day that reminds the offspring to call their mother. This year Tom, Matt and I went out to buy flowers at my favorite store – Lowe’s.  As we strolled down one plant –lined aisle after another I found myself ooing and awing at the grasses, the bushes, and the bedding plants. I picked out an especially pretty rhododendron with deep pink flowers.  Matt watched Tom pick the healthiest of plants and then lift it onto a cart. Matt decided he would buy me flowers also.  “Do you want me to pick them out or do you want to do it?” I asked.  Matt has a history of stressing out when picking out gifts, preferring the receiver choose for him.  Yet, for the past several years Matt has really gotten into choosing for himself.  “I’ll do it.” He replied confidently.  I walked off in the opposite direction to give him time to think and decide on his own. I was admiring the ornamental grasses when Matt returned with an entire tray of plants.  The petunias I recognized right away. Petunias are Tom’s favorite flower and we buy them each spring for our deck.  The others were zinnias – a flower I have never had in a garden.  These were red and white and looked like sunbursts. “Oh, these are beautiful, thanks Matt”. His shoulders went back a bit, his head raised higher – Matt was obviously proud of his selection. I transplanted the flowers into pots that afternoon.  I thought about Matt’s choice and admired my new zinnias. But something was bothering me. Matt always drew me a picture for Mother’s Day.  For as long as I can remember there has been a drawing – usually a cartoon of some sort – that has accompanied the card from Matt.  He always writes “happy mother’sday”, the date and a “love Matt” as his signature on each and every drawing he has given me.  I have collected them for almost 20 years and now I was receiving flowers instead.  Don’t get me wrong, I love my flowers, I love that Matt picked them out, and I especially love that they were a flower I had never had before, but it just didn’t feel like Mother’s Day without a cartoon from Matt. Months earlier I had asked Matt what he was going to draw for me for this year’s Mother’s Day.  It came up as he was planning his summer events on the calendar. He looked at me and shrugged his shoulders – his way of asking me for a hint.  I looked up and on his wall he has a picture he took in his photography course of one of our cats.  “I would like a drawing of Toulouse”. He smiled and gave me a thumbs-up. We continued to talk about the coming summer and plans for each special day up to August. Now Mother’s Day had arrived and there was no drawing.  Had Matt forgotten?  Really?  Matt never forgets anything like that.  I was a bit disquieted by the whole thing.  Of course, I never let on to my curiosity or my disappointment and kept it to myself all day. The weekend got busier and the other kids either stopped by or called.  We all had a wonderful time just enjoying each other’s company.  Before I knew it, it was getting dark and I was wearing down. Exhausted, I decided to hit the hay early – around 9:30pm.  I stopped by Matt’s room on my way to bed to give him a kiss goodnight.  He met me at the door.  I was so tired that I didn’t even notice he had something behind his back.  He gave me a wonderfully strong hug and immediately handed me the paper he had hidden behind him.  It was a cartoon drawing, completely colored, of Toulouse.  Written on the bottom was “happy mother’s day”, the date, and just below it, “love, Matt”.  Best gift of the day.

First, let me say I hate standardized testing.  It hasn’t turned out to be the cure-all for education that people envisioned.  In Virginia, the standardized tests are called SOLs – I kid you not.  No, SOL does not mean what you think.  It stands for Standards of Learning.  Not one good teacher actually thinks they are helpful – mostly they are considered to be a cruel slap in the face to true learning.  Students only learn how to take a standardized test – not think. They must be taught only what is on the test and when they get to college they lack study skills and desire to learn.  Students feel the instructor should only present them with what’s going to be on the exam.  So in other words, students are taught to memorize certain facts which are then easily discarded as soon as the test is over.  Learning to actually think has now become the sole job of higher education. Having said my piece about the sad content of SOLs I will now tell you about Matt’s adventures in standardized testing.  They start testing early on – in elementary school.  Matt took each standardized test along with his classmates.  They made him a wreck.  He couldn’t sleep and cried and begged not to go to school.  Yet, year after tortuous year he passed each exam. Matt has a great memory for facts. SOLs do not require any thinking skills – just the ability to memorizeand Matt could memorize just fine.  Matt did well in each subject; Math, History, Science, Reading. English was Matt’s worst subject. Of course!  He is autistic and autism is a communication disorder. English is how we communicate. It was fully expected that he would have difficulty in written communication. Matt’s writing skills improved each year, but let’s face it, he wasn’t a great writer – he’s autistic.  He never saw the need for the little words; it, is, of, at, the, etc.  Leaving out the little “useless” words always affected his grade.  The only class Matt ever took in High School where he didn’t make an “A” was English – he got a“B”.  He could read, he could do his homework and he could write- albeit, not as perfect as we would like, but well enough to make a point and demonstrate knowledge. To graduate with a regular diploma, Matt needed to pass all of his SOLs – including English.  The English SOL has 2 parts; one covers the parts of speech, spelling and grammar –which is multiple-choice, and the other one covers actual writing skills –students are given a writing-prompt and instructed to write several paragraphs on the subject.  Matt flew through the multiple choice with no problems.  He made an excellent score on that half of the test.  His writing, however, was not very good (those pesky little useless words!).  The overall score is an average of the two tests together.  A student needs a 400 to pass.  Matt received a score of 378.  This was in his junior year of highschool.  He could re-take the test again in his senior year. You can bet it was an intense meeting of the minds that spring as we came together for Matt’s last IEP. Some were convinced he would not pass and started throwing around the idea of a Certificate of Attendance in lieu of a Regular Diploma – it didn’t go over well with me.  I immediately took that idea off the table.  Matt had not worked that hard, received all those excellent grades, repeatedly made the honor-roll year after year to end up with a lousy Certificate.  Once that was cleared up we began to construct an IEP that focused heavily on Matt’s writing skills. Test time came all too soon in the fall of his senior year.  His score for his second attempt was 398 – Damn!  He missed passing by 2 lousy points.  This was really beginning to get under my skin.  How could they prevent my son from walking across that graduation stage simply because his writing skills – his communication skills – are slightly diminished because of his disability?  It’s like saying that because he is autistic, he can’t graduate. I called the ACLU. The ACLU works to stop such injustices.  They took up the case and began giving me ideas on how to get the SOL for writing waived. The Virginia SOLs have a back-up for English.  Students can submit a portfolio of their writing – from several years of classes – and be scored that way.  Oops. Who kept writing samples for the last few years?  Where was this rule when we were discussing Matt’s performance at the IEP?  A portfolio was a great idea, but we didn’t have the required materials for the year.  It was now spring and graduation was looming.  Matt had one more opportunity to take and pass the writing portion and the test date was almost upon us.  I was a wreck.  The Virginia Department of Education was holding their breath, Matt’s teachers were pushing him hard, and his aide wascompletely stressed out.  The ACLU was waiting for the results – would we be going to court to fight this requirement on the behalf of autistic children?  Matt was also a wreck.  He begged not to go to school.  I told him this was the last time I would ever make him take this exam. I told him that I knew, his daddy knew, and his brothers and sister knew that he was intelligent and wonderful and no test in the world would ever change how we felt.  Matt grudgingly took the English SOL writing section for the last time. We had to wait a month for the results.  Graduation was just weeks away and we were on pins and needles.  Then the news came –both written in his notebook and by phone; Matt had gotten a score of exactly 400.  Talk about a celebration!  Oh my, what a relief.  There may not have been dancing in the streets, but there sure was a lot of dancing (and jumping and high-fives) at our house!  His teachers smiled again,his aide could breathe again, the ACLU closed the file and I imagine the entire Virginia Department of Education probably went out to slam back a few to celebrate their good fortune. The following weeks were filled with awards banquets and Matt was honored at each.  Academic Letter, Honor-Roll, number 4 in his class (GPA = 3.81), Who’s Who Among High School Students and the National Honor Society. It was one celebration after another. Finally, the long anticipated graduation day arrived.  On a hot spring morning our family gathered together to witness the impossible.  My son, my beautiful baby boy who I was told would never be able to do anything, who I should put in a home because autism would be more than I or my family could handle, marched into the packed gymnasium along with his classmates.  He sat next to his best friend and we could see them smiling and conversing.  Then,his entire row stood up and marched toward the stage. I held my breath as I watched, tears in my eyes, as my son, now a young man, walked toward the stage, head held high, honor-cords around his neck, stepped on stage and shook hands with the principal as his name was read. And there, for the entire world to witness, a true high school diploma was placed in his hands.

Recently I came across a bracelet in a magazine with this quote: “Not all those who wander are lost – J.R.R. Tolkien”.  It has stuck in my mind for days.  I have seen this quote many times before but for some reason this time it really hit home. My first thought was, “That’s right, some are just autistic!” When Matt was young he used to wander.  It would happen when we were in a group of people such as a family gathering or at Cub Scouts.  If we were outside then Matt would slowly walk to the periphery and circle us.  He kept track of where we were with quick glances out of the corners of his eyes.  If we were indoors, Matt would walk from room to room until he found one void of people, bright lights and noise.  There he would occupy himself with a simple activity such as practicing expressions with his reflection in a window. He was never out of ear shot.  Yes, Matt wandered, but he was not lost. Twenty years ago the professionals of the time told me this type of activity was because Matt was in his own little world, oblivious to the real world around him.  Nothing could be further from the truth.  Matt was choosing to be at a distance, sure, but not because he didn’t know we were there or didn’t think about our activity. Matt watched us in his subtle way, with quick eye flashes from the corner of his eyes, and he listened to us from a distance his ears could tolerate.  The distance was determined by the loudness of our group.  Matt’s sensitivity to bright lights and loud sounds was very challenging for him at family gatherings and special events consisting of 6 or more people.  Heck, it can get too much for me sometimes and I don’t have hypersensitivity for any of my 5 senses. What most people didn’t realize was that Matt was learning the entire time.  He was deciphering facial expressions, body language and various inflections and tones of the many voices.  He listened to our laughter and a small smile would appear.  His hands slowly twisted this way and that as he strolled.  The slow twist meant he was comfortable . ..  and curious.  If he weren’t comfortable he would have screamed and his hands would’ve flapped much faster. If he were not curious he would walk further away and I would have to retrieve him.  There were several social gatherings where Matt kept flashing his eyes our direction and circling with no outward sign of distress.  These were the times when he was truly wandering. The aloof nature of autism leads to many misconceptions about the mind of individuals on the spectrum. Labeled as “being in a world of their own” is one of the absolute worst.  Difficulty with communication and social interaction does not mean one is alien. Lack of eye contact does not mean they can’t see.  Wandering does not mean they are lost. Twenty years ago the label suggested that the child was in a world different than ours and therefore unreachable.  The team of doctors on the day of Matt’sdiagnosis suggested we institutionalize him. This was based purely upon the false assumption of inaccessibility to his mind.  In their eyes he would be un-teachable because his mind would never grab the reality of his environment.  I knew this was fictitious.  I had watched Matt flash his eyes toward me – and smile.  He knew we were here – on the same planet, in the same world – together.  He knew.  Matt was not unreachable. The lack of eye-contact was a misnomer also.  A lack of eye contact, really?  Matt watched everyone around him.  He knew what was going on even if he couldn’t understand it. He couldn’t look directly into my eyes for very long, as if to do so would cause him immense pain, but he could catch my eyes for brief moments during quick glances.  Each connection, each direct hit of eyes to eyes, was like a moment of clarity.  When our eyes connected we shared volumes of emotion and understanding.  When my older son shared eye contact it was this way too, and he does not have autism. The difference is that with my neurotypical son it happened so often and held so long that we took it instride.  It was natural.  Conversely, with Matt the eye contact happened so few and far between and for such a short moment, that each contact packed a bigger punch.  It’s hard to describe to someone who doesn’t have an autistic child, but I bet all the parents of a child with autism understand this very well. Wandering doesn’t have to mean lost, either.  What may seem like a path to no-where may actually be a fact-finding mission done from the periphery of a group.  I do not see my autistic son as lost.  He never was.  He had trouble with communication and understanding of what was going on all around him, but together we conquer those hurdles.  Wandering was just his unique way to absorb and process all of the information thrown at him, at a rate conducive to his pace of learning. The more he learned the less he needed to wander.  Matt is young man now.  When we go for strolls and hikes and interact with the wonders of nature we leisurely wander together. Not all those who wander are lost – sometimes they’re just autistic.  I think I might buy that bracelet.

We all know that parents don’t get an instruction manual on how to be parents.  We all want to know the secrets on how to raise a child so they can achieve their potential and how to interact with our child that builds confidence and character.  All of us also know that no one goes into parenthood with all the answers - we learn slowly, year by year.  From the pregnancy stage to interacting with the adult child, we all travel a road that leads to the future – to the next generation.  The knowledge we attain is so vast that no book could possibly cover it all.  Yet, when we need help we can search the Internet, pick up a book that specifically covers the topic or ask other parents questions on how they dealt with this or that. We make progress ever forward. It’s never a smooth, uneventful road, but it shouldn’t be a chore - like a dreaded homework assignment.  It should be more like a rocky adventure. It is true what they say, that parenting is the hardest job one will ever have, but also the most rewarding. So why should having a child on the spectrum be any different? As complex and challenging as it is (just ask any parent of a child with autism) it is still the most rewarding experience of our lives.  The difference is that parents of autistic children learn skills that parents of neurotypical children never develop.  That’s not an insult – just a fact of life. The communication deficits alone challenge us to look deeper to decipher the facial clues and body gestures early on as it may be the only form of communication we have with our child for years.  Looking deeper requires constant vigil and constant learning.  For parents of adult children on the spectrum the road to understanding autism wasn’t even a walking path yet, let alone an actual road. When my son was diagnosed the prevalence of autism was rare - only 1:10,000.  Knowing another parent with an autistic child just wasn’t possible. Almost all of us from that generation were given a bleak diagnosis of autism with a recommendation for institutionalizing our child. Some did, many of us did not.  Regardless of the route we took long ago, each of us did what we thought was best at the time.  Many of us went against the dogma of institutionalization and in doing so were able to envision a different landscape for our child’s future.  This different perspective was better and slowly - a new path to a new destination began to emerge. For those of us who decided to take upon ourselves the “burden” of our handicapped child, life was surely different than we expected, but never, ever, a “burden”.  Without the books and without the resources of the Internet, we gained insights into autism that few professionals were even interested in. Things like empathy, flapping hands, lack of eye contact, the need for routines, echolalia, limited food choices, covering ears to block loud sounds, not responding to pain for either sickness or injury, were all dealt with intuitively as parents.  To professionals these were symptoms.  To us, these were everyday issues that led to greater discovery. Curiosity and love helped us to look beneath the symptoms in order to understand what our child was really dealing with.  One by one we found the assumptions of what the professionals thought they meant were false.  We found empathy had been there all along. The flapping of hands was actually an expression of emotion – not self stimulation. The difficulty with eye contact and the covering of ears around loud noises were due to sensory issues – not self absorption. Routines were not strange behaviors, but instead a way to diminish the chaos of the environment.  Echolalia was just speech practice and limited food choices were not due to a picky-eater but a combination of taste, texture and color. It was not that a child could not feel pain – they couldn’t express pain. We, the parents of autistic children, found sensory issues and fear to be the basis of every behavior in autism long before professionals even decided it was worth looking into.  Each of us became the autism expert for our own, uniquely different, child. Sometimes we were successful and sometimes we were not, but we kept forging the way – without any awareness that we were doing so.  None of us ever imagined a growing prevalence of autism, now somewhere thought to be1:99 to even as high as 1:65. As our children grew older the world moved on. The Internet eventually linked us all together.  We found we were not alone anymore and we had plenty to share with the parents of newly diagnosed autistic children.  Blogs and websites now provide help for others walking the same path. So many parents are now on the path that an actual road has begun to emerge. Where does this road go?  The road goes to a future with better awareness, better treatments, and greater possibilities for our children to succeed in this world.  Someday the road will be paved and easier to travel and it will be because the parents of each generation made it so.  Each new generation will have a better map and will lay a stronger foundation. As a parent who has been where many of you are now I feel I have much to share.  Maybe some of it will help you, maybe it won’t, but here is my basic short-list to get you a little further down the road: 1. Read as much as you can from other parents.  Some of what they experienced will be relevant and helpful. Some will be inspiring. All will confirm that you are not alone. 2. Read articles and stories written by adults on the spectrum.  They are varied and enlightening.  Each has a story to tell and no two will be exactly the same. 3. Know your own child’s behaviors and look deeper to find their meaning.  Be the expert for your child. Discover the wonderful. 4. Share your insights with other parents.  You can do this by writing your own blog, getting together with other parents whose child is in the same school, or possibly sharing with other parents at a support group.  Parents new to the diagnosis especially need you. Reach out and support the next generation. Help them to get on the road. 5. Learn about the various medications, treatments and diets but use your own instincts and judgment about what is right for your child.  Each child is different.  These types of things only work for some – not all.  Realize that you may find a better way that doesn’t require all of these.  Be open to explore your own insights as a parent. 6. Be very active in the education of your child.  Go to every IEP with a plan of your own.  Be the expert.  Teachers and therapists know general information only. You, on the other-hand, know the specifics about your child – you are your child’s only real expert.  Pop in un-expectantly to observe.  Keep educators on their toes. Be kind and push gently.  If needed, push hard. 7. Share your awareness with those who do not have an autistic child.  They need to learn about it from someone who knows – not from just the media. 8. Be a myth-buster.  There are many myths out there about autism.  The one that really irks me is the “world of their own” myth.  My son is in my world and I am in his.  He is not alone.  He is not an alien.  He is just different, not less. Parents who have a child on the spectrum pushed for the research, the treatments, the educational rights and the awareness of autism that are out there now.  Just as the parents of older adults helped to dispel the refrigerator-mother, I have taken up the calling to share my experiences and my insights as well. Each of us can extend hope to the next generation.  We are the builders of a new road, toward a better future for our children. I found this quote the other day that sums it up quite nicely; "Hope is like a road in the country. There never was a road; but, when many people walk together, the road comes into existence." (NationalOrganization for Rare Disorders, Inc.) Come. Take a walk with me. Try to envision a better future.  Let’s continue to build this road together. Liz Becker, author of  World According to Matt

How do you deal with defiance?  It’s hard enough for a parent to deal with defiance from any child but what about from an autistic child?  I can look back and see that it all could have been handled much better if I had understood the triggers that initiated the “meltdowns”. One specific trigger always resulted in a battle of wills and physical strength. If I had only known then what I know now those battles would have fallen away at a much earlier age. Although I learned early that Matt had a prescribed formula in the progression toward a meltdown, it took me years to discover their root cause.  For those of you who don’t know what a meltdown is I would describe it as an escalation of defiance to the degree of def-con 4 (possibly 5) as compared to a typical temper tantrum – which I would rate as only capable of reaching def-con 2.  Regrettably, the cause was not discovered until years later, after Matt had already been through numerous high-level meltdowns.  Imagine my shame when I discovered that I had unknowingly triggered the worst of them.  “How?” you ask. I told Matt “No!”  The trigger to a meltdown turned out to be one simple, and completely avoidable, word. When he was still non-verbal (prior to the age of 5) defiance was expressed in various behaviors – crying, screaming, hitting, biting, or my all time favorite - the full-body lock down. Child proof locks on cabinets didn’t prevent him from opening the cabinet door under the kitchen sink and the latch on the back door didn’t prevent him from escaping to the yard, then to the road and down to the creek.  Considering the dangers a child is surrounded by on a daily basis, you can understand why I used the word “no” a lot. I didn’t realize back then that Matt’s comprehension of the word “no” meant something more painful than a simple veto.  The word “no” meant “rejection” and suggested disapproval of him to his very core.  I now realize Matt has hated this word since even before he could actually say it.  When he was young I attributed his emotional reaction as pretty typical for a pre-school age child – maybe a bit on the exaggerated side, but I was a fairly new mom – what did I know?  I didn’t see the pain - not really see it -until he was between 8 -10 years old.  Prior to understanding the cause of his meltdowns I had unlocked the pattern of behaviors indicating one was imminent and could at least prepare myself in advance for the ensuing battle. The sequence began with a very stern “No!” from me.  This was met with a show of defiance from Matt. Upset, crying and angry he would make it clear he did not approve of my rebuff and was determined to continue whatever it was he was doing.  Pushing limits, that’s what I thought he was doing.  So, of course, I said “no” again, even more forcefully than the first.  My second use of the word only made matters worse - it lit the fuse for a meltdown. A full-body lock down was his preferred method of defiance in public, whereas swinging fists and kicking legs was usually his choice in our home.  In a full-body lockdown Matt would drop to the floor and stiffen all his limbs.  It was his way of saying, “I’m not leaving”. Picking him up was difficult, but not impossible.  After standing him part-way up Matt then had to be swung over a shoulder and carried out as if being rescued from a fire. You can bet there were plenty of stares from passersby – and they were not kind stares, if you get my drift. If we were home Matt preferred to fight. To prevent him from injuring himself or others I would have to physically contain his movements.  First, I would pull Matt to the floor with me from behind so that he sat in my lap.  Then I hugged him - tight.  My arms wrapped his arms, my legs wrapped his legs, and still he was able to head-butt me a few times.  Once in my arms Matt would struggle mightily to free himself until finally he just broke down. Exhausted physically, Matt would suddenly go limp.  Then the angry cries which had been filling the air from the onset changed to gut wrenching sobs.  As I sat on the floor holding him I would rock us back and forth and speak softly in his ear.  I knew by the anguished cries and the limpness of his body that the battle was over. Nothing in this world has the power to rip my soul to shreds like Matt crying.  His cries are no ordinary cries.  They come from somewhere deep inside him and when they surface they release all the anguish of his frustration and despair.  They are so sorrowful that if I hear his cries for longer than a few minutes, I will cry as well. Before I let him go Matt would always shift his body so he could look at my face to make sure that I was again smiling.  Smiles meant everything was going to be O.K.  It took hours sometimes to calm him down to the point that he could go on to play again. A meltdown left us both physically and emotionally spent.  The worst part was thinking we would have to go through it again someday – as there always seemed to be a next time. Although I knew the routine and what to expect I couldn’t connect the dots between his extreme reactions and a simple reprimand.  I often wondered about how it would be in the future.  Would I have to physically contain him as a grown man?  Was that even possible?  I knew the day would soon arrive when Matt would get the best of me and knowing Matt, he would not be able to handle the guilt of hurting me or anyone else if something happened.  Still, I couldn’t figure it out. I wish I could say that my super-human powers of deduction found the trigger, but that would be a fallacy. Matt actually told me, “no more ‘No!’ no more ‘No!’, please!” in a voice racked with both pain and sorrow.  How would you interpret that?  He could mean he doesn’t want me to say he can’t do something, or he could mean, quite literally, he doesn’t want me to say the word “no”.  In autism, most things are meant literally.  The next time he was reprimanded for something I avoided the “no” word and although Matt showed disappointment, and some confusion, there was no meltdown.  I was in shock. Could it really be that simple? For all those years I had not taken him literally.  All those forcefully stated “No!”s, all those battles that didn’t need to occur.  How many times did Matt fight to preserve himself and force the “anger” in my voice to go away?  I had raised him on smiles and laughter. I had coaxed him to interact by showing him smiles and lessening fear.  When he saw my face and heard my voice as I reprimanded him, it was as if his safety net had vanished and he was falling.  Meltdowns released frustration and anger but also were an indicator of fear. Meltdowns were the only way he knew to fight back. Thankfully, I eventually became aware of the power of the word “no”.  Things didn’t escalate if I used another word or phrase.  Saying “Not now, Matt” or “We can’t right now” was handled much more smoothly.  Although I kept expecting the situation to rise to def-con 4, it rarely rose above def-con 3.  When it did escalate, his screams would intensify and I would instantly become aware that I had said the word “no” again. I stopped using the forceful “No” years and years ago.  There have been no meltdowns. I have said “no” in fun and in phrases like “no-way!” to help desensitize him to the word and he now handles hearing it quite well. That’s probably because he always examines my face to see if I am smiling. Knowing this, I have reserved any stern looks to times when I absolutely have to use them. Autistic children live with fear – lots and lots of fear.  We work everyday to make the world feel a bit safer for them, but still fear lurks just beneath the surface.  Fear accounts for many autistic behaviors.  Is it such a leap to think that fear also underlies the meltdown?  I realized that Matt, for all his accomplishments and progress, still struggles beneath the surface to cope.  He handles all the ups and downs so well that I forget sometimes that fear is hiding just beneath the surface.  An angry face or a sternly uttered word from another person and Matt could be pushed toward a possible meltdown.  Even now at 25 years old it is still possible – though I hope the likelihood has diminished. If it did happen again I am confident I could intervene and stop it before it escalates, but what happens when I am not there anymore? This is why I write – to let others know what autism is and to encourage other parents to look for deeper meaning behind each behavior –even meltdowns. If you are struggling with meltdowns from your own child I highly recommend hunting for the trigger. All children with autism are different, but they do have a common thread. . . an underlying fear. Remember that for every action (trigger) there is an equal and opposite reaction (meltdown). I am convinced that for autism this is true.  Every outward behavior has an underlying and purely logical reason. As parents and caregivers, isn’t it up to us to try to understand them just as much as they are trying to understand us? If I only knew two decades ago what I know now . . . Facebook Fan Page

I know you’ve heard of it – Theory of Mind.  You probably looked it up to see what it meant and came across the term “mind-blindness” and found it used as a way to explain autism.  So many professionals use this in a detrimental formal way to characterize individuals on the spectrum and suggests, whether intended or not, that autistic individuals are incomplete in their humanness.  Let me ask you this; do you agree? Theory of Mind – the ability to relate to another’s thoughts and emotions.  A very fancy way of declaring empathy as it relates to social communication.  Can you place yourself in another person’s shoes to understand why they act the way they do – do you feel their pain?  Take a look around you.  How many neurotypical people do you know that could care less about the unemployed, the homeless, the sick, or the elderly?  Neurotypical people are not always empathetic or our society would be a much better place.  And yet, when discussing Theory of Mind, neurotypical individuals are assumed to possess such a depth of empathy as to declare it as part of our humanness.  As such, suggesting that autistic people do not have Theory of Mind is in essence, stating in a subtle way that having autism makes one somehow less than human. Researchers conclude a seeming lack of ability to empathize as a result of data obtained from the infamous Sally-Ann test. If you scan the research you will find many references to the Sally-Ann test.  Sometimes this is given as a set of pictures and sometimes it is shown as a video.  Here’s the situation presented to the child being tested: Sally and Ann are in a room with a box and a basket on a table. Sally is shown putting her marble in the box and then leaves the room.  Ann, having seen Sally put the marble in the box, walks over, retrieves the marble out of the box and hides it in the basket.   Then, Sally returns.  She wants her marble.  Where will she go to retrieve her marble; to the box or to the basket? Seems fairly simple, but then in autism, nothing is that simple.  In asking the child “where will Sally look?”  they are asking the child to empathize with Sally – put themselves in Sally’s shoes.  But in autism some things are just not that black and white. We have to ask ourselves what is the priority of the child being tested?  The child, if they are anything like my son Matt, are always concerned about being right.  As a young child, Matt had to get an “A”  in every class.  A simple “B” caused terrible pain and meltdowns.  He just couldn’t think of himself as being less then anyone else. A "B" made him feel . . . imperfect.  He still has this type of thinking, over 20 years later, and he still strives to do his absolute best.  Yet underneath it all still lies a fear of failure, a possibility of imperfection.  Now take this into account when grading a Sally-Ann test. It’s a test and as such, he would want to be correct.  He knows where the marble is and he knows that Sally does not know where it is.  He is being asked to choose between saying Sally will look in the box – where he knows the marble is not (Sally would be wrong) - and saying she should look in the basket - where he knows it to be (Sally would be right).  Since they are asking him to be Sally and he would not want to be wrong, he will choose the basket.  Basically he is confronted with a dilemma; either pick where the marble is not (box) or where the marble is (basket).   This has nothing to do with an inability to empathize and everything to do with self worth.  If they are empathizing with Sally, then they don't want her to be wrong - it's an awful feeling to be wrong.  Maybe, they just want her to find her marble so she won't be upset . . . When a child states through whatever form of communication they prefer - whether it’s verbally or in gesture - that the marble is in the basket, the researchers assume this child could not put themselves in Sally's shoes and by deduction, must lack a Theory of Mind.  The researchers missed an important component to this type of test - they forgot to put themselves in the shoes of the individual they were testing.  So I have to ask, just whose mind are we really talking about here in regards to lacking empathy? I see this as a perfect example of how autism myths arise and are then justified to society – with the end result portraying being autistic as somehow less human. Isn’t it interesting that only neurotypical people declare autism as somehow less than human?  Shouldn't we ask an autistic person what it is like and whether they feel empathy?  There are plenty to ask.  But instead, society as a whole ignores the plethra of information available from actual autistic people, preferring to listen to people who apparently have trouble communicating with actual autustic adults.  Does this even make sense to one person?  In articles written by autistic people they are quick to say that they would not choose to be “cured” of their autism “disorder” because to them, their autism is an integral part of who they are.  And yes, they do have empathy.  But it shouldn't matter anyway because all they really want is to be viewed as just as important to society as everybody else. So why must we have a view of autism that constantly focuses only on ways in which to fix it instead of also including ways in which to promote cooperative communication? Shouldn’t neurotypicals (such as myself), be as willing to learn the various forms of communication an autistic individual (such as my son) chooses to use at least as much as the autistic individual is required to learn to communicate in the ways in which we choose?  And, if communication really was a two-way street between neurotypicals and autistics, then wouldn’t researchers be aware of the empathy present in the autistic without such meaningless tests as the Sally-Ann? It is my own personal opinion that for someone to state that an autistic person “lacks empathy” is to declare ignorance of the reality of autism.  If you are reading this then you are most likely a neurotypical parent of an autistic child.  Think about how you would characterize autism in your own words based upon the 24/7 interaction and experience you have with an individual on the spectrum.  After taking into account all that you know –and remember, YOU are the expert of your autistic child – then how would you respond to someone declaring (in scientific journals no less) that your child has no Theory of Mind? My response to these researchers and professionals would be “Have you people no Theory of Mind yourselves?” After all, if they are unable to put themselves in the shoes of an autistic person then they themselves lack theory of mind.  If they can not explain a situation involving an autistic person, then they must be suffering from mind-blindness.  And if they can not see that these children are overwhelmed by sensory issues, communication differences, fear of failure and bombarded by social cues being forced upon them, then perhaps they lack real empathy. So I ask you, just whose mind is really deficient in the ability to put themselves in another person’s shoes?

What was the first game you ever played with your child?  Most parents would probably say “peek-a-boo”.  It’s hard to play peek-a-boo with an autistic child because it requires them to look at your face or into your eyes – something that is very difficult for them to do.  One of the first games I played with my son Matt was airplane.  I would swing him around in a circle much to his delight – except Matt needed me to swing him facing away from me. Trying to engage my autistic son in a game was difficult.  We would go for walks or stack blocks but these were not real games.  Games require skill and attention to details and someone wins and someone loses.  Games in that regard didn’t begin until much later.  Back then I didn’t know whether Matt would ever be able to join the rest of his family in playing a game, but I decided to keep my expectations high. Being autistic meant that Matt was a loner – he didn’t seem to like to play games. I believe the social interactions were just too complex for him back then.  Then we bought our first video game.  It makes perfect sense that he would be so attracted to them. After all, the games were dynamic and visually appealing and he could play them by himself.  There are times when I have wondered if the real force behind his learning to read was his desire to know the rules and short cuts and to obtain all the bonus points offered in his video games. Matt eagerly took on video games.  He used this time to himself to practice moves and explore various strategies without someone watching him or heaven forbid, interfering.  Not only could he explore new worlds that were simple and organized, he could also put the chaos of the real world away.  The complex and annoying sounds of family life emanating from the rest of the house were drowned out by the happy tunes of Mario Brothers and the dinosaur screams of Jurassic Park. Video games didn’t require him to interact with anyone else.  I really think that the attraction of the video game was even deeper still.  I think it took the stress off of his shoulders – the stress of being in a world he didn’t understand, a place that scared him. Matt began to talk at 5 years old and began the habit of thinking aloud.  It was this outer monologue that provided me with clues to what he was thinking and opened a door into his thoughts and feelings.  For example, listening to him talk to himself I discovered he could pretend –something thought to be impossible for autistic children.  I can remember many times just listening to him converse with the characters in his video games.  I often wondered, “Why can Matt converse so easily with the animated characters of his games but not with me?”  After spending hours watching and listening I finally found my answer – Matt’s imaginary conversations were his way of practicing speech without the fear of failure or any interruption of thought. It was safer.  I found out years later that Matt carried a tremendous amount of fear.  Fear of failure was 90% of it.  Matt wanted to do everything perfectly and when it was not he would berate himself.  His self worth was tied intimately to his view of perfection. Playing with another person may have appeared to be an easy transition, but it only came about after Matt had practiced conversing with his animated friends, had gotten his skill level at the top and he began to notice the behaviors and interactions of his hero – his older brother, Christopher.  Matt found playing with his brother advantageous as he learned new skills.  Matt would secretly watch his brother play a video game, but he was afraid to ask to play even though he wanted it so badly it hurt. On occasion, Christopher would see Matt spying on him and ask him to play.  In the early years, whenever the opportunity arose to play with Matt, it was an unwritten rule in our family to allow him to win every time.  This encouraged him to play with others more often and not only increased his confidence but also lessened his fear of interaction. Unfortunately, you just can’t let them win indefinitely.  Sooner or later they also have to learn how to lose. The era of the contest thus began. Christopher was a fierce competitor at heart and it wasn’t long before the games took on the feel of Olympic competition.  Matt had to fine tune his skills in order to stay competitive and he would play (practice) for hours almost every day.  Even with such diligence he had days when he lost in competition to his highly skilled brother. Loosing was like a slap in the face to Matt back then.  It inevitably brought tears and temper tantrums. Yet, as much as I wanted peace and tranquility I wanted to see progress even more.  I would sooth his feelings and talk about it  “just being a game”  but Matt didn’t understand.  To him, losing was an assault on his very being. Losing made him feel inadequate – less. Christopher had been a good sport for the longest time and it was time to let him prove himself a champion gamer also.  It was important to let Christopher loose to use his skills just as it was important to let Matt figure out how to deal with losing.  It felt like forever, but eventually Matt was able to accept the loss without the meltdown. To get through this tortuous time I had to learn a very important lesson; losing was synonymous with imperfection in Matt’s eyes. Years later, when the meltdown’s finally ceased I could fully appreciate the magnitude of what he had endured.  There are so many road blocks with autism.  Getting past this one – learning to lose –was one of the hardest.  The worst part was witnessing his pain – the pain of discovering imperfection.  To Matt, losing meant he was somehow less and the blow to his self-worth was always heart-wrenching.  There were many days when watching my autistic son pass through these excruciating stages tore my soul apart.  Yet, as difficult as it was on Matt, he never gave up.  In doing so he gained insight into himself.  His worth as a person was not tied to his ability to win a game.  A game is just a game. With an indomitable spirit, Matt pushed himself forward, kept making progress, and slowly turned away from the safety of complete solitude. Matt was determined to understand the complexities of winning and losing and in doing so found he could be part of our family’s dynamic social interaction. As the years went by I watched Matt take part in bolder,more socially – intensive games.  He joined in for board games, swimming pool games, card games, and outdoor games.  But the story doesn’t end there.  Just recently he jumped his last hurdle in the area of family games.  Matt played flashlight tag with us for the very first time. Our family has played this game countless times over the years, ever since the children were all very young.  The game is basically hide-and-seek after dark.  Matt hates the dark. In this game the seeker gets a flashlight and if they shine it on you and call your name then you must go to “jail” – a reserved area of the deck – until someone breaks you out by tagging you.  Another area is reserved as base – if you make it to base then you are free to rescue those in jail.  It requires planning, blending in with shadows, knowing when to move very quickly and when to move slowly.  To be good at this game those hiding must be willing to climb trees, lie under bushes or belly-crawl along the grass. Over the years our children have gotten very good at this game.  Matt however, has never played.  He would always stay indoors in the light of his room and play a video game while the rest of our family braved the darkness.  The darkness is something that Matt still fears, even at 25 years old.  We have tried countless times to coax him out, but he would always decline, that is until last week. My husband and I have been married 20 years now.  To celebrate our anniversary we decided what we really wanted was family time.  The kids are all grown–up now and getting the entire tribe together is almost impossible.  My husband’s 2 children (Jacob and Sarah) are both married.  My oldest (Christopher) has his own house and a long time girlfriend.  Everyone is busy with home and work and responsibilities.  Our request for family time was very specific – we would be playing one last game of flashlight tag.  My husband and I are in our 50s and I just can’t see myself crawling on the ground or sprinting toward base for too many more years.  Matt knew of our plans to play and waited for his invitation as usual. When I asked him if he wanted to play also – thoroughly expecting him to decline – I was surprised and delighted to hear “Yes!” as his reply. The game got under way soon after dark.  Matt became Christopher’s partner to learn the ropes on both hiding and seeking.  He hid well, he sought to free those trapped in jail, and he seemed to enjoy all of it.  All of it that is, until he became the seeker.  Christopher and Matt each had a flashlight and began collecting victims almost immediately.  Unfortunately, Matt failed to capture me and this upset up him tremendously.  He marched back to the house and went to his room. I went in to speak with him. I reminded him that it was just a game, that it was just for fun and that he was an adult.  Matt takes pride in being an adult and hearing me refer to him as an adult immediately got his attention. Matt is determined to live independently and he knows from our many conversations that he must act like an adult to live as an adult.  He looked directly into my eyes as I reminded him that on occasion I win at Wii Sports and he tells me “Good job,momma”.  For me to evade detection in a game of flashlight tag was no different. Matt thought about this for a minute.  I could see the wheels turning as he looked at me and could actually tell the exact moment he made the connection to the other games he had played.  When it clicked, a smile returned to his face and he hugged me. Matt understood – flashlight tag was just a game, nothing more. It was not an insult to his intelligence or to his self worth.  He was not less simply because he couldn’t find me in a silly game.  We both returned to the group and continued to play long into the night.  Matt seemed to put more life into his game; he laughed more and interacted more. He obviously enjoyed himself much more after our short talk.  The joy he felt was because the fear of failure had been lifted from him.   He felt good about himself – he knew he was not less. Games are not just games to the autistic child.  To them they are a chaotic collection of mysterious mannerisms, facial expressions, voice fluctuations, gestures, and emotions that have to be unraveled slowly and meticulously to be understood.  Maybe other autistic children are like Matt in that they view their performance in a game as a measure of their own self worth. Matt knows he is autistic and that it makes him different but that doesn’t mean he has to feel as if he is less. Through games Matt has learned to cope with disappointment.  Losing no longer means failure or imperfection.  It just means it’s someone else’s turn to win.  I feel honored to have taken this journey with him, knowing I have the luxury of looking back to see just how far he has come.This amazing young man is the most courageous person I have ever known.  It took something deep inside him, pushing him hard, to try to understand the mysteries and complexities of social interaction.  I know in my heart that it has been Matt’s determination and courage – not mine – that allowed each transition to transpire.  From learning to converse to overcoming fear of failure, games have been an integral part of Matt’s social development. Games . . . just one access panel for the autistic child to all that eludes them socially.

There have been 3 recent studies in the news - I have issues with 2 of them. I’m a scientist myself, so when I read a study I examine it very critically –it’s just part of who I am (a link to my research can be found in the About the Author section of this website). Let’s start with the one I don’t have an issue with. A study done in Korea finds the prevalence of autism to be almost double than what was thought, 1in38 children were autistic.  The children in this study were all between the ages of 7-12 years old, from middleclass families, from the same city, in a country with universal healthcare and education.  They tested a whopping 488,509 children.  They looked at everychild, in person, and used a standardized testing method for behaviors and IQ tests.  The study found the prevalence of autism to be much higher than anyone would like at 2.6% (instead of the 1% cited by most other reports).  The study was designed well with a large data pool.  It was controlled for variables – all these children had similar environments, healthcare, education system, and were tested the same way. This study was science at its best. Will we find this high of a percentage in our country?  The CDC uses special education records to pool their data from students all over. There’s no control for environment, and many without access to healthcare are being missed altogether. Sorry, but the CDC – Centers for Disease Control – really has done a shabby job of things. According to the NY times, “Dr.Marshalyn Yeargin-Allsopp, chief of developmental disabilities at the National Center on Birth Defects and Developmental Disabilities of the C.D.C.,acknowledged that her agency’s records-based approach probably missed some autistic children — especially among the poor, among racial minorities and “potentially among girls” — and said the agency was interested in taking part in a population-based approach like the Korean study”. Better late than never, I suppose, but it’s been over 20 years since autism rates started to really climb upward.  What exactly is the reason behind the foot-dragging?  And, what is the true prevalence in the United States? The most often quoted ratio is 1:100, but since the way it is estimated leaves out so many children the true prevalence of autism in this country is surely to be quite a bit higher. The “egg on the face” award goes to the CDC.  The “high-fives all around” award goes to the organization, Autism Speaks, for funding the study (that should have been done by the CDC long ago) and to the researchers of the many leading institutions (Yale, George Washington University, etc) that came together to design such a detailed research plan.  They are expecting to expand their research to even more refined areas of interest, such as the role of environmental factors. I'm looking forward to their results. Speaking of environmental factors, the second article is about the proposed link between anti-depressants and autism. Basically, they found that, ‘ . . . 6.7 percent of women taking antidepressants gave birth to a child with an autism spectrum disorder, compared to 3.3 percent of women who weren’t taking antidepressants.”  That is a tiny, tiny risk. Let’s put this another way . . . over 93% of women on an anti-depressant while pregnant will NOT have a child with autism.  Yet the headlines scream there’s a link and subtly suggest it’s not only a huge cause of autism but also that it’s all mom’s fault . . . again.  The CDC did the funding of this study by Kaiser Permanente.  The researchers only looked at 298 children with ASD and used 1,507 control children drawn from their Northern California membership – hmmm .. .. They then examined the medical records to obtain information on mom’s use of antidepressants and then looked at the differences between a mom with a normal child and a mom with an autistic child. Was mom taking a selective serotonin reuptake inhibitor (SSRI)? And  did mom take said SSRI (Prozac, Zoloft, etc) before becoming pregnant or while pregnant? That's it . . .that's all they did. This is a crappy study.  The population was not controlled very well and the findings even if true do not carry much weight.  I could do a study and probably find a link between the number of banana and peanutbutter sandwiches eaten by pregnant moms and the risk of having an autistic child simply because by looking at such a small number of women.  Ever hear of the correlation between the number of pirates and global warming?  The basic math is this; as the number of pirates grew fewer in the world, the temperature of the world got warmer.  Yep, it’s true.  Does that mean that by eliminating pirates we have doomed our world to global warming? Of course not!  Just because you have a small group that seems to show a miniscule rise in risk due to anti-depressant drugs doesn’t mean there actually is a risk at all.  What if the real miniscule risk is the clinical depression? – which can be hereditary. Heredity (genes) by the way, has been shown to account for a whopping 90% of the autism risk. What’s really awful about this shoddy study is the accusatory tone the media has given it.  Mother’s are again the suspect. Finger pointing will again be directed at the mother just as it was during the “refrigerator mother” hoax. Mom’s around the globe will now be looked upon as the bearers of autism upon their children and suspected as drug abusers.  I award this study the “irresponsible crap award” . . . for obvious reasons. The last article of research, if you can even call it research, is the United Kingdom study on autism prevalence that found no autism epidemic exists. Clinical assessments of only 618 adults suggested that 1 percent of Britons over age 16 have autism, which is similar to the percentage being diagnosed in the children.  They go so far as to declare that the number of people developing autism has not changed in over 70-80 years.  Does anyone believe this?  Anyone at all?  Those that hide their head in the sand will want to cite this study in order to call into question whether the United States has had an increase in autism.  When my son was diagnosed he was 1:10,000. Currently the prevalence is given at 1:100 and its probably closer to the 1:38 (according to the researchers who did the study in Korea).  Now they want to back away from that alarming statistic by trying to convince us that no increase has occurred because they looked a group of 618 adults . . . ? One of the researchers even went so far as to say, “What we found is that there is a very low level of recognition of autism in adults, which means that rates may not be increasing, people may just be better at recognizing it."  If you are reading this and have an autistic child I would like to ask you this question: Did you notice something was wrong with your child or did someone have to recognize the problem for you?  For me, it was quite obvious there was problem with Matt.  I started the ball rolling.  That was 23 years ago and if I could recognize a problem and doctors could diagnose autism well enough back then, then why weren’t more children diagnosed?  Parents are not stupid or blind – but this study thinks we are. I give the “bullshit award” to the researchers in the UK for their latest “study”. So there we have it - a run down of the latest research and their worth as science.  The Korean study outshined any previous study and we need to prepare ourselves to see the actual number of autistic people go up. As for the others? I think shoddy scientific studies make all science look bad and suggest to parents of autistic children that the true cause must be kept secret, fueling conspiracy theories and more bad science.  It’s a shame we can’t just force all scientists to follow the evidence.  Some (many) are in for the money or are lazy – after all, every profession has their money grubbers and slackers.  But it is the field of science we rely on to find out the answers to all of life’s problems and so we must hold them to a higher standard. We must call “foul”when we feel the science is bogus and the researchers inept.  I call FOUL on the UK and Anti-depressant studies. Be critical of what you read – be prepared to call “foul” when the science smells bad and rejoice in the studies that really look at the problem at hand.  If you donate to autism research you’ll want to be sure it’s really research. Our children’s future literally depends on it.

From Original Blog May, 2010: The following was written by my son Matt.  I came across this school project and after reading it (again) I thought, “Wow – this is Matt in his own words”. I thought I would share this with you as it may shed some light on the nature of autism.  These are also things Matt will not discuss verbally unless prompted. Matt is almost 26 years old and moderately to severely autistic. His major handicaps are in the areas of communication and social interaction. The descriptions of the pages are mine, but the words are Matt’s words. The emotion underlying the words is palpable.  His written words tell more about how he felt about himself and the world around him, about his faults and his dreams, then if he were ask to describe himself verbally.  Writing it seems is a safer outlet than spoken language. My editing is minimal. I left in the misspellings and put all the commas and dashes in just as he had them on paper. The comments in parentheses are mine.  Matt wrote this In May of 2001 as part of a school project. Cover page decscription: full of drawings of the things he liked most that year; the Titanic, Trains (of course), the Sears Tower (tallest building), the atomic bomb explosion (history) and Johnny Bravo (a cartoon character). The table of contents lists the categories he had to cover; 1. a photograph of himself – which was a picture of him and me at the river 2. vital data 3. My people 4. My heritage 5. Who am I? 6. What I do 7. Favorite things 8. Changing 9. Steps to change 10. Tomorrow. Vital Data Date of birth: I was born Jan 14, 1986. Age: My age is 15. General Description of Myself: Height: 5 foot 9 inches tall, weight: 160 pounds, hair – short + brown, eyes – bule, nice, gentle, - man, I’m pretty. Little feet, little muscles but very smart. My People The people that are important to me are my brothers, Chris + Jacob, and my sister, Sarah. My Mama and Papa are also important. My Ms. Austin is special and my best friend Kevin. Chris is graduating. Jacob loves magic cards. Kevin is in my class! Ms. Austin is sweet! Sarah will be driving! My daddy is nuts! My Mama is crazy! (these last 2 were meant to be funny – but hmmm, it could be true . . .) My Heritage Description:  I helped Matt draw a family tree with all the members from both sides of our Brady-Bunch type marriage. Who am I? (Matt was suppose to describe how he saw his personality) Matthew is an 8th grader. I don’t like homework, But I like high school and my friends. I am autistic. I see and do things different than other people. I work slower than most people. I like to draw anything. Drawing helps me remember facts. I can’t look at people because I feel uncomfortable. I don’t make friends easy. Don’t like change + food texturies bother me. Mama takes care of me at home, Ms. Austin helps me out at school. What I do (Areas where Matt feels good about who he is) I like to play sports like golf and soccer. I was at Special Olympics for 5 years. I won 13 blue ribbons. I did 3 science projects and won 2 grand prize, and 1 red ribbon. I like Titanic movie and work on a model the ship. I best thing is drawing. I like to draw carton characters. My favorite place is the Field Museum of Natural History because I like dinosaurs especially T-rex, Brachiosaurus. My Favorite Things Music – I like to sing with my favorite songs. Motherless Child – by Eric Clapton I Don’t Want Miss a Thing – by Aerosmith Touch of Grey – Grateful Dead I’m Eighteen – Creed T.V. – these shows make me laugh Three Stooges – I like Curly the best, he’s funny + makes funny noises Cartoon Cartoon Fridays – Ed, Edd, n’ Eddie, Powerpuff Girls, Johnny Bravo, Dexter’s Lab, Cow and Chicken, Courage the Cowardly Dog, Mike, Lu and Og and I am Weasel Movies – I like comedies because they make me laugh Jackie Chan’s Who Am I?, Wayne’s World, Blues Brothers 2000, + Mousehunt. Sports: I like to watch all kinds of sports. I want my teams to win. Baseball, Basketball, Golf, Hockey, Soccer, Bowling, and Tennis Hobbies: I like these things because they make me feel good. Things I like to do - Drawing, playing games, listen to the music, ride mt scooter, watching TV, eat at McDonald’s Changing ( Matt was to describe how he would like to change within 5 years) I would like to graduate with good grades and lots of friends. My goal is to go to Radford University. I need to work on homework and big labs. I want to college by myself. I want to learn to drive and be a man. I want to be an artist after my finish college. I want to be a cartoonist. I need a good job to make money to support myself + so my mom won’t worry about me. Steps for Change I need to feel comfortable with people so I can study at Radford University. I need to talk to people + make new friends. I need to more active in school + community. I need to slow down + make eye contact. I need to learn to talk to people. Tomorrow. ( 20 years later and Matt is to write a letter to describe what his life is like) Dear Kevin, I graduated from high school with you. I’ll so graduate Radford University. I got my degree in Art + Science. I have a new art studio in Wytheville. I like drawing cartoons all day and getting pay. I sell my art in Chicago. I like to travel by car. It’s a pretty trip my family in Rockford, Ill. I’m doing so well and business. I plan to make my studio bigger. If you need help let me know. You’re my best friend. Matt Well, that’s it. Let's take inventory . . . If you read between the lines (as I do) then you can see a self awareness emerging in Matt. He was grappling with some very tough emotions. He wanted so much to be like others his age. Matt was only 15 years old. He felt different and alone. He had dreams and set goals. As I read his words my heart ached all over again. Oh, if I could have only made it just a bit easier for him . . . Matt has had had some very successful outcomes from his lists - he did make good grades and graduated with a 3.8 GPA, as an Honor Student.  Matt made friends - a very tough thing for him.  People who know Matt love and care about him - he really is "nice and gentle" as he states.  Matt's eye contact is much better (once he gets to knows you), he's still picky about food textures, but handles change extremely well (we consider changes in routine as adventures).   Although Matt lives at home, he takes care of himself - everything from fixing his own meals to doing his own laundry.  He tells Tom (my husband) and I that we are his best friends.  I am his intrepreter for both other people trying to decode his actions and for for Matt to understand others. He still loves cartoons, comedies and drawing.  He took a photography class at the college a few years ago but his test anxiety was so bad that he has since shyed away from full-time study.  We're working on it (FYI - even with test anxiety Matt received an "A" in the class and he has changed his favorite college from Radford to Virginia Tech). Matt no longer wants to have a job where he would have to work with others as he is highly susceptible to comments and other people's drama.  It would be a very difficult and risky move as one bad day on a job could cause him to regress years.  Matt is still emotionally fragile (a fact that is difficult for many people to understand and the one autistic trait that keeps him on the severe end of the autism spectrum). These words, Matt’s words, were written almost 11 years ago when Matt was still a child in transition to adulthood. His self awareness in these words is obvious - so is his frustration. Since the writing of this essay some things have changed and some have remained static.  Learning, whether it is at school or at home, whether he is learning to drive a car, doing his own laundry or even perfecting a new art form, takes time - lots and lots of time.  In raising an autistic child one must learn to be very patient and to be very open to changing goals.  One must remember that goals are arrived at by small steps.  I am fortunate enough to be able to look back and see the tremendous progress he has made over the years and this is why I know that the goals he has made for himself can be reached (if given enough time) - it's called hope. We continue to work on making his dreams a reality, but as I said, we move slow in the world of autism.  The way I see it, if Matt can show so much trust in me, and display such courage and determination every day - without complaint - then what is so hard about my retaining hope and perfecting the art of patience?

This is one of my very first stories written in the winter of 2010. Oh, the joys of potty training . . . I didn’t think we would ever get out of the diaper stage. How do you potty train an autistic child? First, they have to learn control and second, they have to learn to clean themselves. It’s nasty business for adults, think of how nasty it must be for someone with an acute sense of smell and touch. Matt was in diapers for years. We tried everything to get him to control his bladder. Nothing seemed to work. He was 5 years old and diapers didn’t fit well anymore. Training pants were always wet. Even the pre-school was tired of changing him. Our nerves were shot. We just didn’t know how to proceed. One summer afternoon I was out on the deck watching Matt in the kiddy pool. He even had to wear protection in the pool because of lack of control. His disposable training pants were saturated from pool water and it was time for him to get out. It practically fell off as he stood up. I grabbed the dissolving clump before it could hit the deck. Nude and loving it, Matt ran around the deck in the hot sun. Tom had just come out the door and we were laughing at Matt’s obvious joy of being naked. Christopher came out to see what all the laughter was about. I’m not sure who had the idea first - was it Christopher or Tom? Anyway, the next thing I know both were standing off the edge of the deck and peeing into the yard. Matt was fascinated. Remember that love of lines and arcs made by water? Well, he was hooked almost immediately. He ran to the edge and stuck his belly out as far as it could go, pushing his back with his hands, and began to pee. Here I was, in awe of their glee and a bit taken back. I would have been mad if it weren’t for the fact that it worked – and they seemed to be having so much fun! Everyday after, Matt would stop what he was doing and run outside to pee. Clothes were easy to remove, and the training pants were finally becoming useful. Matt loved the pool and spent most days naked as J-bird, splashing around and jumping out to pee off the deck. We lived in the country, no one around to see, and I couldn’t see any harm in it. When we had Jacob and Sarah for the weekends, Jacob would join in and Sarah and I would retreat to the house. Sarah was very jealous, and to tell the truth, so was I. It was this particular summer that our cat had kittens. They had a nice little shed just off the deck where they stayed with the momma cat. At 6-weeks of age we put an ad in the paper and started receiving inquiries. A woman and her two children came to see the kittens. They were petting each one, trying to decide which kitten to take, when out came Matt - stark naked - and jumped in the pool. I called for Tom and before he could get out the door, Matt had decided he needed to pee. He slipped past Tom, ran to the edge and let it fly. The woman mumbled something like, “We need to think about it” as she quickly hustled her children toward the driveway to escape. I found this to be extremely funny and started laughing. Tom laughed and Matt, hearing the joyous sound laughed too. His behavior had just been reinforced. He was controlling his bladder in the privacy of our yard. What harm could it do? Then some time in the middle of summer we decided to go to the local flea market. We gathered up the kids and Matt’s changing bag and headed out. Each child was looking at items on nearby tables, staying close enough so we could keep track. Matt stayed right with us. Tom and I were discussing an item we had found when I heard the sound. Matt had dropped his pants and was peeing right there, in the middle of a crowd! What could we do? He was in full stream. We looked at each other for only a moment. I moved to block the view, standing on one side, and Tom calmly moved to stand on the opposite side. Christopher and Jacob walked over and began to giggle, but taking a cue from us, moved to block the view. Sarah wandered over and seeing what was happening, just smiled and joined the ring. We managed to block any and all view of Matt or the stream. The entire crew worked like a well-oiled machine, and without words, came together to protect Matt. No one in the crowd seemed to notice. We decided to leave before anyone could say anything to counteract that assessment. It took all summer to get Matt to pee in the toilet. It took all summer to make him stop peeing off the deck (and he never again let loose in public). But we did it, and Matt was on his way to self control. Bowel movements were something quite different. First, Matt couldn’t figure out why a part of his body kept coming out. What was that nasty stuff? Sitting him on the toilet and waiting and waiting and then taking him off the toilet and cleaning him up seemed to take an hour each time. Matt would watch the water swirl with each flush. Where did that nasty stuff go? He evidently needed to explore this phenomenon. One day I found him in the bathroom, stuffing plastic links into the toilet. Plastic links are those brightly colored blocks of various shapes that link together to form long lines. Matt was trying to find out just how deep the hole in the toilet bowl went. He would shove the entire linked chain as hard as he could, then add a new link. We tried to remove them, but each pull resulted in a simple disconnect of a link. The blocks that were in the hole were wedged in tight. Tom finally had to take a blow torch to the toilet to melt them free. Of course, this was followed by clogging the toilet with toilet paper – an entire roll. Matt was learning to clean himself, but instead of using just enough, he became fascinated with the dissolving properties of the paper and just couldn’t stop. Another plumbing nightmare (and more would come). We became experts at plunging. Ah yes, potty training. We were both experienced parents when it came to potty training a child. But we were amateurs when it came to potty training an autistic child. We needed creativity, a great deal more patience and a sense of humor to pull through. The best part -if there can be such a thing? It’s finally over!

Enjoy the Routines - from April, 2010 We have certain routines for holidays. The Fourth of July is my favorite. First of all – it’s warm. Any holiday that heralds the glory of summer has to be one of my favorites. Second – we always go to the Salem Fair, a place that holds many great memories of our children growing up. Third - I love fireworks. I always look so forward to Fourth of July. One of those memories involves 4 small children and 2 broke parents. Raising 4 kids isn’t easy financially. In the beginning we were always struggling to save money. Our first trip to Salem was to simply watch the fireworks – we couldn’t afford the fair. We had an old van back then that smoked terribly when we idled at stop-lights or were trapped in a traffic jam. Our old van held all of us fairly comfortably. I say fairly because it was missing the back bench seat. Jacob and Sarah sat on the first bench seat and Matt and Christopher sat on the floor where the second bench seat should have been. Matt is my youngest and he is autistic. That first trip to Salem to watch the fireworks was a spur-of-the-moment trip. We weren’t sure where we were going or where exactly we would be pulling over to see the fireworks, we just went. We stopped and picked up chicken dinners and drinks and headed for the big city. We drove around awhile and found a factory parking lot that faced the direction of the fireworks, pulled in and awaited night fall. The fireworks were amazing. It turned out we had a front row seat. Matt was especially thrilled. He covered his ears for the “boom” but he was captivated by the patterns the sparkling light made in the night sky – and he was hooked. Each year thereafter we had to go to Salem to see the fireworks on the Fourth of July. As the years progressed we got better at the finances and soon we were taking the kids to the fair itself for a day of rides and pig-races and taste-testing samples of the latest snack foods. Matt wanted to ride the roller coaster – after all it looked sort of like a train (it had a long winding track) and the track was laid out in various spirals, which I’m sure Matt thought made very cool patterns. He bounced as he waited in line. The roller coaster was one of those kiddie-coasters and only meant for really small children. It didn’t even go very fast. Matt was larger than the other kids that rode with him, but he smiled just as big. He went on a few other rides, but mostly he avoided them. Some were just too scary-looking to attempt. He watched his brothers and sister scamper toward every ride – fearless, and although he wanted to ride too, his fear forced him to be a spectator only. This changed slowly over the years. Each time we went, Matt seemed a bit braver and would attempt a new ride. Weeks before the holiday each year, Matt would start the countdown on the calendar. Each day he would announce how many days until our annual trip to the Salem Fair. Each year we exposed him to something new. One year we had all the kids enter the art contest. Their pictures were on display for all-the-world to see for the entire week of the fair. Matt won one of those contests years ago and it helped to boost his self esteem tremendously. This was during the same year as his big win at Special Olympics. Man, did he love those blue-ribbons! It was also during a time that Matt was fascinated with weather and especially tornadoes. In this particular year, Matt had chosen to go on some of the rides that were previously feared – like the giant ferris wheel. This ride towered above all others. Instead of a bench seat it carried gondolas, allowing 6 people to ride together, round and round. It moved slowly and of course it stopped us at the top. The gondola swung back and forth. I hate heights – but love the view, and just kept telling myself, “Don’t look down”. As a result, my eyes focused on the mountains in the background and the dark sky in the direction of our home. Matt was also looking toward home. “Uh oh . . .” he said softly. “Don’t worry, Matt” I said to him, “Those clouds are pretty far away.” Matt kept looking homeward and announced, “I think it’s a supercell.” Supercells are cloud formations that produce tornadoes. He didn’t say it fearfully or even as a possibility – he stated it as fact. We all turned our gaze toward the dark clouds. Matt knew his weather. We looked at each other. Matt was right about such things and we wondered, ‘Was there a tornado near our home?’ The wheel began to turn again and at each stop downward we looked at the clouds. The storm drew closer, but as we watched it move along the mountain ridge we knew we were only going to catch the edge of the storm. It began to rain. We waited out the storm indoors. This was where the booths were set up to sell various items, where the artwork was displayed, and where “headliner” shows were performed. We walked slowly around to each booth and then stopped to watch one of the shows featuring acrobats. The sun re-emerged and back outdoors we went, straight toward the petting zoo. Matt stood back and watched as we fed the animals. We told him what each animal was and that they wouldn’t bite. Yet, even though he could see we were all enjoying the animals, Matt remained fearful. The fireworks display was on time. It turned out to be a great day and great evening. Tired and sunburned, we packed up and headed for home. It was late when we returned home – and the house was still standing. We were relieved when we didn’t see any wind damage. The next morning as Tom and I had our coffee and listened to the news we found out that a tornado had touched down just outside of Wytheville and they were showing pictures of the homes damaged by the large hail that preceded the wind. Matt had been right again – it really was a supercell he spotted from the ferris wheel. The years flew by and the Salem Fair changed. They took away the fireworks display as companies near the fairgrounds began to complain of a fire hazard. This meant we needed a new venue. The town of Wytheville had actually increased their display and it’s close to home. Our new routine is to watch the fireworks in town, but we still go to the Salem Fair during the day. The rides seem smaller and the price tag bigger, but we go because, well, it’s our routine. Matt still tries something new each trip. He did a bull-ride one year and let an artist draw a caricature of him in another year. Just a few years back, Matt attempted to climb the rock wall. He didn’t make it very far and I could see on his face that he intended to conquer this wall within the next few years. We still walk through the petting zoo of small exotic animals at the fair, but now Matt actually hand-feeds the emu. And we still ride the giant ferris wheel to take in the magnificent view. So, what’s the point of this story? First – everyone has routines. One of the characteristics of autism is the need or desire for routines. I need certain routines – don’t you? Autism just increases the number of obvious routines, but routines in and of themselves are nothing new – we all have them. Second – Routines can provide a measuring stick for noting changes in behavior. Matt became more incline to do something new each year – new rides, feeding the animals, sitting for a picture, and climbing the rock wall. These were all significant because it showed he was maturing and his independence was gaining strength. Third – Connections can be made. Matt connected his knowledge of weather to the cloud formation he witnessed and formulated a conclusion – the tornado. This is the application of knowledge – a crucial step in the road to critical thinking. Fourth – Routines provide an avenue to work through fear. He knew where we were going and what to expect and could make plans to conquer specific fears as all else was the same. It allowed focus. Matt worked through his fear of fast rides, his fear of crowds, and less fear meant more focus on trying something new. The only thing hard about routines is getting one started. Once you have it in place you can use it as a tool in teaching the autistic individual. It doesn’t feel like work, and certainly doesn’t feel like teaching, yet a routine may be just what you need. I wrote that story in April of 2010 with summer just around the corner.  Now when I re-read it I think of how wonderful the Christmas holiday season is for starting routines.  With Christmas coming up and holiday demands increasing it is easy to lose sight of the simple joy in a family routine. This year why not start a new one? Design a fun routine that you can enjoy every year - one you build on and use to see progress.  Something simple as a mall trip or a game in handing out gifts on Christmas morning can be more powerful than you realize.  Life gives us ample opportunity to develop, engage and learn from routines - afterall, there's no better classroom than life itself. Enjoy your routines!