Autism for Dummies

What is Autism? I wanted to wait awhile and educate myself as to what it is said to be and what it looks like for us. Medically and diagnostically speaking it is a pervasive neurological and developmental disorder. Autism is labeled a disorder and is not a disease or an illness. It is a meaningful distinction between the two classifications in something such as Autism. Autistic children are, arguably, not sick. It is a spectrum problem meaning the level of function and the prognosis is individual to each person diagnosed with Autism. It also means that if you line a hundred children with Autism up together you will find three areas in common in which they will universally have some degree of impairment. These areas are social cueing and relationships, communication both in expression and reception, and perceptual problems resulting in some form of rigid patterned behaviors, an over or under response to incoming stimuli, or a need to stick to a very set pattern or routine to feel safe. But, once these children are lined up together, though they will all have at least some affectation in these three areas, the pendulum swings wide from there. Nobody knows what causes most cases of Autism. There are two forms of genetically produced Autism that are known. One is called Fragile X Syndrome up to one third of children who have Fragile X will also be classed with some variation of Autism and the other is a condition that only affects girls called Rhetts Syndrome. Rhetts can be devastating to a girl who begins developing normally and then somewhere between the first and fourth year symptoms set in. All other cases are a sort of mystery to the medical community. The largest volume of Autism cases seem to fall in the wide open landscape of the latter, far less clear, category. There has been some controversy over the years suggesting the medical grade of mercury, thimerosol that was found in the childhood immunization MMR might be the cause. Many believe that even if not the shots it is almost certainly an environmental culprit. But, research, thus far, does not support those theories. Still others think that it is purely genetic. They say Autism is like a flip of the coin and a loss on the genetic craps table. But, they cant prove that as of yet either. If you asked me I would guess the truth, as it so often likes to hide, will be found somewhere in the middle of these ideas. A genetically predisposed child is triggered somewhere along some crucial point in their development. It is entirely within reason to believe that different triggers, multiple factors, will be found causal. Toxins, infections, genetics, and any number of environmental triggering factors may all play a role in Autism. Science does not back me so far. We are told it is genetics though nobody can quite pinpoint how it happens. There is no cure for Autism. If your child has it he or she will grow to be an adult who has it. There are therapies for Autism available. Many of these therapies involve heavy influence on unlocking speech. There are also sensory integration therapies, occupational therapies, physical therapies, speech therapies, sound integration therapies, music and even nature therapies. All of it is designed to help the Autistic

child learn to communicate and to integrate the things he or she sees, hears, and feels in a way that makes sense in his or her mind and body. The goal is to connect the mind to the body of the Autistic child and then to connect the child to the rest of the world. Studies show that earlier intervention beginning, at or before three years of age, is showing very promising results. There is hope today for the most deeply affected child. No two Autistic children are exactly alike. Some are devastatingly crippled in one area, perfectly normal in another, and standing next to another Autistic child you might not even guess they share the same disorder. Some children are much more mildly affected than others and they are often classed into a higher functioning form of Autism called Aspergers Syndrome. These children often have far less affectation to their ability to speak and a higher degree of cognitive function, at least at an earlier age, than their classic Autistic brothers. Higher functioning cognition and speech does not always diminish the level of sensory integration issues these children and adults can have, so an Aspie, may be still quite impaired. The prevalence of Autism has skyrocketed over the last 30 years. The numbers look like this in 1980 1 in 5,000 children were born with Autism in America; in 2007 it became 1 in 150. It is 1 out of every 70 boys being born today. And the number of girls with non-genetic forms of Autism is also increasing dramatically. Today the numbers have reached a mind bending 1 child in 88. Science and the medical establishment would like us to use the term prevalence increase rather than to suggest an actual increase in the number of cases. They ask us to believe that we were missing or misdiagnosing cases for decades but that the actual true numbers of children born on the spectrum have always been the same. They are saying the prevalence has increased because there is better understanding and recognition of the disorder. Prevalence or actual numberswhatever you choose to believe I can most assuredly tell you that the diagnosis of Autism is on an incredible rising streak as I write this the numbers from the CDC are about to be flipped again like a bad McDonalds sign it will soon be reading: Now in 2012 1 in 88 children worldwidehave been served. Many people do think it is a package and parcel deal that one, we are able to diagnose better and are classing far more children that would have been missed a decade ago, and on the more damaging side two, that Autism has become a catch all word for a parenting or a behavioral problem. Some people think Autism is the new go to word for bad parenting and bratty kids. Both of these ideas are damaging, in the wide blind eyed acceptance of them, because though there is certainly some truth in better recognition and some quick mis diagnosing, they minimize the plight and the day to day struggle of the family and child with Autism. It is my opinion that no amount of better testing or new class of diagnosing could explain these numbers away. And it is coming to a neighborhood, a family member, and a crib near you. If youve not experienced it closely, I promise you that if it continues as it is going, faster than pediatric cancers, diabetes, and aids combined, you surely will.

People carry an idea of Autism in their minds. The actual functional show of Autism is probably not what they at all expect it to be. It certainly is not what I thought it was either. We gain these ideas from movies such as Rain Man and other media produced images that show either the special side or the awful side of Autism. Rain Man is about an Autistic Savant. This is a psychological phenomenon that can occur in about 10% of all people who have Autism. It is an area of genius or talent such as in music, numbers, memorization, or visual spatial mastery. But, it is rare, not nearly as common as the wild success and popularity of that movie may have led us to believe. Studies seem to prove out that many Autistic children will have an area, or areas, of intense interest or passion that they may excel in, but actual savantism is still considered to be rare. On the flip side up to two thirds of Autistic children will simultaneously be diagnosed as mentally retarded. Many children who have no words and no desire to engage in our world will have difficulty displaying what they know. Through testing such as block stacking or play based problem solving puzzles and basic skills assessment many children will fail to land on par with their neuro typically developing peers. Though many Autistic children may begin their lives labeled mentally retarded, and some will indeed live out their lives with cognitive and learning troubles, many scientists and teachers believe that children with Autism can catch up and many in fact will surpass to an astonishing degree their typically developing peers. The difficulty in knowing the degree of deficit lies in the current methods of measuring intelligence. All of the methods of today require a child to engage and be active in communication and demonstration. Quite simply put, a child with Autism may not yet be able to show what he knows. There are also many perceptions about Autistic children and a lack in their ability to feel or express love. There are people who believe all Autistic people will be unable to live in independently or function in the world. They have reason to think this way only somewhere around 3 % of Autistic adults do manage tow work and live independently at adulthood. Some people have the idea that all Autistic children and adults are violent to themselves and others. Some people view Autism as hopeless and horrible. There have been many stories told about the awful side of Autism. Over the years I have seen many investigative reports, medically based and sound from highly credible media sources putting out hour long specials on the devastating side of Autism. T he news media too has jumped our new numbers and added a voice to the hysteria. Many people whove no direct experience with the disorder have visions of children biting, clawing, staring off into space, body rocking in corner, locked inside of themselves hopelessly with no love to give to another. These visions are held firmly in the minds of countless people in our public. Again we must remember the spectral aspect of Autism. If we view it like a rainbow in our minds we can follow it through all the way across. We see mild at one end, and the bigger parts all edging toward the middle, all the way to the furthest extreme side. So when we speak of these kids on either the Savant end or the profoundly Autistic side they are the tiniest grouping to our numbers. The truth is that a lot of children diagnosed will start off in the broader, roomier, part of the bow somewhere nearer the middle. There is a vast amount of love, life, and happiness to be had there in the middle.

The attitudes and ideas of Autism have changed over the decades. I t racked as far back as the early 1900s, of course it existed long before then, but until then it went without a name. It was thought to be a mental illness and for a long time it went by the name Infantile Schizophrenia. It was believed that emotional damage perpetrated by adult caregivers, parents, created Autism in children. Early treatment in this period for Autism care was removal of many children from the parental home and placement in foster care. When that failed to cure Autism attempts were made to re-live certain psychological states that the Autistic child was believed to have missed in development due to coming from dysfunctional homes. The idea of emotional damage persisted for a shatteringly long time. If Autistic children were not removed from a home outright many parents who had the means voluntarily placed them in institutions because Autism was viewed not only as shameful but hopeless. People who did not have means often hid these children from sight. They created rooms, or under porch areas wrapped with chicken wire, and locked the child away. For a brief time in the early 1900s frontal lobotomy was also used the end result often left these children without any of the skills they may have learned and most of these guys were placed into institutions and never spoken about again. There were lots of methods of early treatment. Most however were shot down like doomed clay skeet pigeons because from their beginnings they came from bad theories. The root fallacy of Autism as a psychological or emotional problem was a bad launching board; unfortunately it was the best that science could come up with for a long while. Each method put forward did make claims to some successes but the numbers are hard to find today. While many people began looking at the Autism problem during this period, they largely labored under the psychological illness theory, until that idea began to shift somewhat in the 1940s. Unfortunately there was a backslide under another mans beliefs for a long while even after that. Understanding of Autism went both forward and backwards for a long time, but, the intent to solve it and affect change began. Below is a brief history of some of the pioneers who began work in Autism care. In the 1940s a psychologist name Leo Kanner, renamed the condition publishing about it under the word Autism, though he borrowed that word from a published writing by another man who had been addressing schizophrenia. In fact, Autism for a time went by the name Kanners Autism after that. Kanner was perhaps one of the first in the pioneering men to see Autism as not purely psychological. He wrote about the separate distinction between Schizophrenia and Autism. He wrote and published in journals articles such as The Nervous Child and put forth that it seemed unlikely to be wholly a psychological disturbance since these children seemed from the very start to be consumed in their aloneness. He began painting a picture that included a role of biology in Autism. Hans Asperger was also beginning his work at the time. He pioneered the idea of a spectrum disturbance when he noticed with the 200 families he studied that some children had Autistic traits and tendencies but seemed more mildly affected in speech and cognition. Even though he wrote about this milder form of Autism the term Aspergers Disorder did not appear in the DSM- until the IV edition in 1981 after it appeared in a written journal and was applied by a psychologist and mother of an Autistic child. Things became very dark in early Autism care under the theories and teachings of another man named Bruno Bettelheim. He believed that Autism was solidly a mental illness based in emotional roots. He

believed that these children had been damaged, abused by a failure to bond, psychologically. He wrote

many articles while he ran a hospital for emotionally disturbed children. He coined the phrase and wrote extensively about the Refrigerator Mother.
Since Bettelheim considered Autism to be a mental illness and a problem created by people responsible for the care of an emerging child he drew on existing Freudian theories of the time. He attached Autism to bad parenting and pinned firmly the blame, exclusively, to the mother of an Autistic child. Backed by solid (coked out, small penis, short man, and almost certainly a bad lover :) Freudian psychology Bettelheim began writing about the mothering style he thought produced Autism. He believed that a lack of love or coldness from the mother created Autism in the child. It was another man and parent of an Autistic child himself who disagreed with Brunos theories. When Bernard Rimland came onto the Autism scene in 1964 he went straight after the Refrigerator Mother theories. He solidly believed in a biological basis and a neurological and physiological disorder that was responsible for Autism. He dismissed entirely the idea of an emotional basis of Autism. He wrote that the psychological approach to Autism was outdated saying out right that such an approach was useless. He blasted directly the theories of Bruno Bettelheim in writings such as Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior. It is Rimland whose works led to a now fast growing approach and protocol to Autism care called D.A.N. Defeat Autism NowI will discuss that approach in more detail later. Enter to the Autism scene Ole Lovaas. He used theories stemming from work that branched out of B.F. Skinners published works Behaviors in Organisms and the works of other men who came before and he put them into practice and first applied them to Autistic children in the1950s and 1960s. He wrote a now famous article called Science and Human Behavior in 1953. The therapy he created is one that is still in use today. He originally fell short in his attempts to affect much change on Autistic behavior but went back changing his parameters by beginning to focus his intense new experimental therapy on children under 5 years of age. This therapy is one of the most solid approaches in Autism care today. It is the only one to my knowledge that has 40 years of documentation and recorded statistics to back it up. The therapy goes by the name A.B.A., Applied Behavioral Analysis, and it was born and began its first steps with our children under Lovaas. He continued his work with Autistic children exclusively eventually writing over 70 publications aimed at teaching developmentally disabled children until his death in 2010. In brief, and to the best of my very limited understanding, A.B.A. is an approach that sought to minimize mal adaptive behaviors and increase desirable ones that an Autistic child might display. It did so by identifying a desirable behavior and taking small incremental steps using repetition and reward in the direction of a desirable trait until the goal is achieved and maintained without prompting or reminder. On the flip side A.B.A. also targets and attempts to redirect any maladaptive behaviors, until a harmful or socially unacceptable one is phased out and eventually becomes extinct altogether. It uses redirection and positive reinforcement towards more acceptable and or socially appropriate behaviors.

It relies upon the theory of predicting behaviors and using reward, aversive, repetition, and positive reinforcements to affect the likelihood of a desirable trait being repeated, or conversely, to decrease the likelihood of a negative or undesirable trait being repeated. It did not, and does not today, cure or fix Autism but it sought to help an Autistic child make his way through society with adaptive healthy functional coping habits through learned behavioral strategy. But, it wasnt a viable option for most people until much later than the 1960s. It was experimental at first and studied with selected groups of children. It like some of the medical approaches of today was not readily available to much of the average public until later. It also probably did not help that parental blame and emotional disturbance ideology remained at the root of Autism theories and persisted until somewhere into the mid 1960s. Early Autism care, thought, and theories ranged widely in the early years. Some things worked, much did not, but we can track back some of the history of how it began. In short it is simply easiest to say that in those early days of Autism care, for the average family, our children were often shelved. They were either taken away from their familys altogether or sent home with without much hope, education, or real therapy offered. Parents were encouraged to find permanent placement for the children that they were told they themselves had damaged. The theories touted, backed and whole heartedly supported in the early history of Autism care, remain a stark shameful bright hot blight- on an otherwise progressive age. There was guilt, outright shame, with an intensely private pain attached to Autism. And yet it is important to remind ourselves that it is from these harsh bare beginnings that the roots of Autism care of today were seeded and began to grow. Today there is much better, though still, no complete understanding of Autism. Although certainly some stigma remains, particularly in the stares and harsh comments given by others when our perfectly normal looking children behave inexplicably in the public, still we have come a long way. I also believe that science is receiving a return backlash with a refund on much of that old pain and misery that they so misguidedly handed out with some of the parents today assigning blame or in showing a refusal to trust their children to them. It would behoove science to remember some of its own history when they look down upon us smugly from behind their pedigrees, books, and podiums. Knowing what youve read or seen in your work with Autism is vastly different from living with and loving a person with Autism every day. There is much wisdom to be gained from both experiences. Remembering where we all came from, and reminding ourselves that there is no complete understanding of Autism, is a start. It was not until 70s and into the 80's that much true compassion, public awareness, and real enlightened progress and care were extended to everyone with a greater attempt at equality in Autism. The ideas and blame attachment in Autism shifted dramatically. In 1990 the Americans with Disability Acts was signed into law and things really moved for all people with disabilities, not only those with Autism! The idea of a child with Autism remaining at home, getting a fair and equal education, finding a place in society, and a firm push towards gaining independent life skills, and true hope were suddenly in full swing. There is also a growing medical approach and movement for Autism in effect today. There is Bernard Rimlands D.A.N. approachDefeat Autism Now. This approach had its beginnings in the Autism

Research Institute, though there are many groups and physicians using this approach today. D.A.N. seeks to find other ways physiologically that Autism might be affecting our children. The D.A.N. approach believes that Autism is an allover systemic illness that expresses itself not only neurologically but in a wide array of other physical ways. They believe that Autistic children are lacking certain vitamins and minerals and essential functional body substances, or have allergies, sicknesses in their gut or absorption and digestion issues, or that they have been polluted by toxins such as heavy metals. D.A.N. unlike the most supported current school of medical thought believes that Autistic children are, in fact, sick. They rely heavily on diet such as gluten and casein free and in rotating certain grains and dietary additions in and out of cycles. It is documented that about 20% of Autistic children will respond to such dietary changes. They also believe in supplements and other therapies such as chelation or removing heavy metal toxins from the body. D.A.N. seeks a total cure and a recovery from Autism that they believe is medically based. It is however not covered by most insurance plans, is widely unregulated, and not accessible to an average family in terms of cost. Many people are spending fortunes out of pocket and years in a lifetime of effort. Some of the therapies and treatments D.A.N. prescribes and promotes have been considered controversial. I think the most recent thing Ive been aware of has been something loosely attached to the DAN approach called MMS (Miracle Mineral Solutiona quick youtube search should pull up this unfortunate horror for you) which is essence a mixture that boils down to an industrial grade bleach. Children have become sick and even died under some therapies, one child I know of in England from MMS. The mother not able to afford MMS spoon fed her child Clorox and he died. Chelation too has taken a few innocent lives. Even with all of that said there are moderate and more reputable DAN doctors out there, I do not mean to impugn every bit of their work, I just mean to inform and hope that people would proceed with care and caution. There are many people and physicians alike who are convinced that D.A.N. approach will hold the key to curing Autism. While D.A.N. has thus far not been a path I am ready to follow, I do believe that something in the seeds of its efforts in this infancy will sprout and affect change for Autism in the future. I watch patiently to see what will take root and flower.

What does Autism look like to us? We have a child classed in the severe range. But, we see him as solidly in the middle of the rainbow. He was missed diagnostically for a long time. Our small town physician failed to take into account the vast spectrum of the disorder and didnt see its beginnings in our child. She couldnt conceive of Autism rates being at 1 in 150 and laughed outright saying Thats absurd! If that were true it would be an epidemic and the whole world would be talking about it! Though I first spoke to her about concerns for my son at 8 months I couldnt bear to look for too long at a time and I gobbled up her reassurances and ignored the CDCs websites.

Our son smiled, made great eye contact, had obvious intent toward speech, a friendly personality, and was never retractable. I didnt understand that in looking at young children for signs and symptoms of Autism that a provider or parent shouldnt be looking at what oddities or markers they ARE displaying, rather, it is easier to flag interventions based on the normal milestones that they are NOT making. Our provider missed this too. It took an excruciating 9 months and a whirlwind rotation of specialists and office visits to psychologists and a regression, and missed opportunity for every under 3 intervention, and snarky mean comments about Did you not notice this sooner, tisk tisk tisk! from diagnosticians and a seriously damaged and poorly handledpunted away into Nowheresville and OMGturfthisurkeyburg---and a badly exhausted angry and by that time suspicious pair of parental hearts, to get a definitive diagnosis. Long after WE knew absolutely, that he was a rainbow child, I might add. WE did know that Nicholas had not escaped his placement in the 1 in 150we knew for a long time that our son had Autism.

Though I now know we brought him home Autistic, some families say that they did not know until somewhere between one year and two years of age that Autism was present in their children. For some families Autism presents suddenly as if out of the blue in a regression. A child who was talking or communicating and making milestones, sometimes reaching them in advance of what is expected, will suddenly stop. Eye contact and emotion suddenly dim. Tiptoe walking and hand flapping, repetitive odd behaviors, and solitary rituals begin. I knew when my son came home to me that he was different. And after diagnosis I could easily go back and pick the ways he showed himself from the earliest age. Of course in the living of it we didnt know until after. We had thought he had a serious solemn personality and a speech problem. We even thought for a time that he was deaf. Then he had a sudden spectacular regression and flare at just before two years and there was no longer a trace of a doubt. Here, if you are wondering, is where the heartbreak of the Autistic family lives. Heartache is found in the silence that suddenly roars in shrieking into every part of your life in the moments your child spins away from you where he had not before. There is a sorrow unlike any other in those horrible at once freight train flying speeds and slow dripping like winter molasses days of knowing something has gone wrong. Time does both things then. It speeds up even as it slows to a crawl. It is at once a slow and tugging ache and a sudden sharp brittle snapping break. Autism as it is presenting has a singular kind of sorrow. My son has speech issues. He has probably fewer than twenty words. And those are not used with any degree of constancy. He does not know or have a real concept of self and his connection to the world. He does not know to say I want. He does not point. He makes limited eye contact. He does not reliably respond to his name. He does not seek out touch though he is warmly receptive of ours. He does not seek us out to share all of his experience. He is okay with solitude though he warmly loves us. He is not always connected or present with us, or, with you. His attention span is very limited and sporadic. He does not register pain properly and if he is hurt he does not call out or ask for help. He doesnt react to heat or cold properly either. He wanders with no sense of danger, traffic, water hazards, strangers, or climbing to wobbly heights registers nothing at all to him. If he becomes lost and you call for him he will not respond,

he will continue to wander. His sleep is disturbed without medication he will sleep only 4-6 broken hours in a 24 hour period. He is a tiptoe walker, a hand flapper, and a constant noise maker who is always moving. He must be supervised absolutely 24 hours a day or he risks injury or death through wandering. But, for my heart, the single most devastating symptom my son has, is his near total lack of speech. Special abilities? We are told our four year old son is reading. He has read a few words off of paper with no pictures or recognizable symbols. He has a very acute understanding of our spoken word, and when he is connected, he understands at a far advanced level than his years would mark him able to. And all of these things place our son solidly in the middle of the Autism spectral rainbow. The Autism rainbow is long and wide. And while we are walking it there is a loneliness that is untouchable. There is a sadness that widens the distance. Sometimes it feels impassable. Nobody I believe starts out thinking I want to know this much about Autism so that I can apply it to my own child. I dont think most of us want to know this much about anything! It does not even begin to touch the barest tip of it to say that this disorder is so misunderstood. Science tells us what they know, but it isnt much. When we seek answers so often we find that they turn away and wash their hands of us. They speak to us of early interventions and therapies that may help and then they refer us away like hot potatoes. They provide no real answers, because they simply dont have them to give, and the loneliness and heartbreak of that understanding is all-encompassing at first. We are left to find acceptance and mingle it with all of the hope we can muster. We then pick our path, and therapies, and we find a way to carry on without ever giving up on our children. We become the experts. And we branch out differently. We wander our way going with what feels best. We all choose a path; most of us use some combination of approaches, we juggle our choices while trying to maintain our own lives as we go. Some go with D.A.N., and some like our family, do not. Some families will have more financial means than others. Some choose hours upon hours of daily intensive multiple therapies. Some are less aggressive with their approach. Some will see Autism as an illness and some as a disorder. Some will expect and believe in a cure. Other families will seek improvement but will accept Autism as a lifelong challenge. Some will see Autism simply as a different way of viewing life and embrace what they see as the gifts that are brought with it. Some people will see their Autistic kids as Indigo or Crystal children and consider them spiritually evolved. And some will fight it as a disease with everything that they have. Some will choose experimental, unproved, new treatments. Others will rely on the school systems. Some people will pay out of pocket for their services and be limited by financial constraints in what they can provide. Others will be well enough off to secure a top level of care. Some people will live in areas that provide little to no care. Today, the combined approach of A.B.A. work along with speech, occupational, early intervention, special needs preschools, and for some the D.A.N. approach, are considered widely to be the best methods of reaching our children. But, we will all wonder at some point if we have done enough. And it should also be mentioned that there are some parents who will become lost in a deep thick velvety padding of denial. Sometimes this is because they are coming from cultures with blame attachments or simply because it is too painful to see. We cannot judge these folks. It serves nothing even in this country Ive heard congressmen from major conservative parties stand there without flinching from their

platforms sicking Angry Jesus on families who have children on the spectrum. Shouting into the wind and digging his heels into our pain and into our faces about Autism being Gods punishment for past abortions. Abortions that I never got. Abortions that so many of us never got. There are many possible reasons for a denial that will not break. For some families it will take years to come to terms and to begin to move into acceptance. I have no judgments for these people, I have simply vowed to be here with compassion and kindness when and if their bubble breaks. The approach and outlook that each family will take with a diagnosis of Autism is an individual thing. Acceptance is sometimes not found for many years. On the heels of our diagnosis I ran into a woman Id never met before at the park. She saw my son and I saw her boy, a child of about twelve. We both recognized a deep shock in each other and spotted the Autism apparent in our tip toeing and hand flapping children. We moved nearer to each other and spoke briefly. My son was not quite three and just diagnosed but this mother had only just come into acceptance of her adopted 12 year old sons condition. Though many people had tried to label her son she had resisted. She spoke to me in tones drenched in sorrow about her pain and denial. She said she mourned the time she had lost in intervention. How well I remembered my own painful break from denial. This conversation and her willingness to speak to me was a gift granted to me. For all my sorrow, fear, and pain I understood right away that, for our family, being in action was a good thing. But, for some it will take years to come to terms. But, whatever path we do choose when acceptance is found it becomes the way that is right for us. Because of the misunderstood nature of Autism I submit that there is no real right or wrong approach, there is only what allows us to function within our families, what provides help with a bearable amount of additional stress, there is only the way that provides to us the most hope. The important thing is that we cannot give up on our children. Today Autism is still woefully underappreciated. It receives less than 5% of the funding of other far less prevalent childhood disorders and diseases. We hear about obesity and asthma as epidemic in this country when they have nowhere near our numbers. The most the CDC has said about 1 child in 88 being diagnosed with Autism is that Autism is a concern to the CDC and health departments. With w ords like that it is easy to cry for the fat kids and forget our silent children and gapingly obvious that Autism is an issue that nobody seems to want to deal with. It is starkly obvious in the silence that surrounds and it has been rendered nearly as silent a topic as our nonverbal children are. We hear about obesity, asthma, and other childhood disorders as epidemics when their numbers are nowhere near what Autism is. We watch politicians and government agencies largely avoid the topic as if it doesnt exist. Or we listen to wild junk science theories that come and go in and out of vogue. We see people sneering at the ideas some of us have about possible causes and treatments. Ive even seen magicians Penn and Teller produce an episode about Autism on their popular show called Bullshit. In our home Autism is far from Bullshit, I assure you, and the numbers did indeed rise in 2007 when my son was born. There is mistrust, finger pointing, mockery, and outright anger slung about in the Autism world. They put the anti vax groups on t.v. and howl with sneering laughter at their attempt to find an answer. They give us hour long special on the beauty of the Indigo and Crystal children. They play up the magical piano playing parts, and the masses sigh sweetly. They ignore those of us stuck in the middle raising disable children with very few answers. And yet the truth comes most loudly through what they are not saying than with what they do say. The truth is that nobody fully understands Autism at all.

What can you do for a family struggling under the burden of Autism? Be patient with the family who just found a spot on the watercolor rainbow because it is a life changing confusing place to be. Remember that nobody has a complete answer for us. You can think us silly for the ways we try this and that, and for the ways we fight so hard, but kindly refrain from judging us too harshly. Remember that if science doesnt have the answers, and trust me you dont either, how on earth did it come to be that we should have them? You will see us trying and dropping many things in an effort to reach our children. Sometimes we will be in a fever of new strategy and sometimes night will find us sitting in a chair staring at the walls with utter exhaustion, completely tapped, with nothing new to try. It will come and go in cycles. Sometimes our sorrow and anger will kick up like dust in a sudden stiff wind again. We will feel it as if it is fresh all over again. The death of the dream of perfectly normal is a significant thing for some of us; it creates long lingering phantom pains. Love us and be patient with us. I have come to believe that if there is one single truth found in Autism at all it is that our love and belief in our children will be the main things that will matter. Love and belief are medicines that no science can measure. What we all have in common is that we love our children and are doing the very best that we can. And the very best that we can is more than good enough! Tell us you believe that too. Take the time to learn a little bit about Autism and its history. Dont pity us or diminish your belief in what our children might accomplish. Nothing breaks a heart more than when we feel a person do that. Teach yourself to believe that anything, anything at all, is possible. Dont minimize our journeys and struggles with a steadfast vision of a wholly fixed day coming in the future. We live in today. Today has a lot of challenges for us. Instead pay us an occasional nod of honor for our strengths, speak out encouragement for the things we are doing, and forgive us for our failings. The lives of parents of Autistic children are hard sometimes. The pain when the dream of perfectly normal breaks is intensely private and yet excruciatingly public as we begin to build a new hope for ourselves and our children. The challenges of raising an Autistic child are layered, minute, finely pointed, inexplicably blunt and sharp edged at the same time. Autism is absolutely unrelenting in the way it constantly shifts its shape and face upon our kids. Autism has the ability to present as both chronic and acute simultaneously and sometimes the struggle of what we face is impossible for us to articulate. Just remember that our love for our children is not diminished by Autism. When you dont know what to say offer a smile or a cup of coffee, or, simply let us see in your face some kindness and compassion there. Lastly, if you grow tired of hearing about it because it doesn't affect you, stop for a moment and remember that we, the family of those who have it, have to live it every single day of our lives. And our days can be so very, very, longand still for us, no answers have come. Someday too, Autism may touch more closely to home, maybe reaching evenyou. You will see then the pain in the understanding that there is no understanding at all. God bless and thank you for reading.