Listening with the Heart - A guide to understanding non-verbal communication in the autistic child for parents, teachers, and professionals Special Hardcover Edition - only at Barnes and Noble Press! Order here! Free shipping. Click to purchase through Amazon! Reviews - 5.0 out of 5 STARS! The best part of life is what we share. How do we share if we can't communicate? If we are very, very, blessed we will have someone in our world who has the love, patience, and steadfast determination to listen very hard. So much so that they can actually decipher the unspoken, and in turn, teach us to really hear and be heard. Endless research and study done through the eyes and instincts of a scientist, teacher, author, and most importantly, a mother, have afforded us this invaluable insight into the skill of communication. Matt, a moderate to severely autistic and non-verbal child, had a lot to say. His mother teaches us how she learned to listen. "Listening with the Heart" is a combination of observational science, and storytelling, told by someone who has navigated the difficulties of raising a non-verbal autistic child for over 30 years. The author understands that real communication goes both ways - an understanding which allowed her to see the child, get to know the child - and not focus on just the autism. This highly engaging book not only discusses the 12 different ways in which an autistic, non-verbal individual communicates, but also shares many heart-warming stories from Liz Becker's personal experiences. Her success in communicating with her son, and him with her, has lead to her son living on his own - independently - which is a rare and amazing accomplishment for an individual with his degree of autism severity - and a wonderful tribute to the power of understanding non-verbal communication. - Gayle Johnson-Cartland, RRT. From the back cover "Listening with the Heart - A Guide for Understanding Non-verbal Communication in the Autistic Child, for both Parents and Professionals" "93/7 Rule: 93%of communication occurs through nonverbal behavior & tone; only 7% of communication takes place through the use of words. -John Stoker" Liz Becker found this to be true from Matt's early age diagnosis of moderate/severe mostly nonverbal regressive autism. In her book, "Listening with the Heart - A Guide for Understanding Non-verbal Communication in the Autistic Child, for Parents, Teachers, and Professionals",the most amazing line I held close to my heart is, "He spoke with his heart, I listened with mine - and amazingly, we heard each other". This extremely inspiring book, is written for parents and professionals. Her instinctive insights into nonverbal / minimally verbal children with nonverbal behaviors in Autism children and adults prove they do communicate, we just need to read, see and listen to their language. It is not a short cut to communicating- it is a lifelong journey. Matt has proven that with his Mother's perseverance in communicating with him, he can and has achieved more than many neurotypical children and adults. He is an independent and amazing young man, not because of his autism, but because his mother never gave up on learning to communicate his way and he was heard. Readers will find in this book many ways to communicate with nonverbal or minimally verbal autistic children as well as the ones not labeled autistic. Reading this book has made me more aware of the many ways we communicate with nonverbal language. I thank Liz Becker for giving me more insight into peripheral vision as a communicative activity - of which I have already started in my therapy sessions. This book is remarkable! You will find yourself in a whirlwind of proven ideas that work. She gives all professionals (teachers, therapists etc...) and parents a roadmap to communicating. I hope parents, teachers and therapists use this book as a resource to learn new ways to understand and communicate with nonverbal and minimally verbal Autistic children. She teaches readers that understanding the child's language and them any ways to communicate invites us all to see each and every Autistic child as a unique individual, and learn not to ever compare - or to give in - to social norms, but Always! Always! Keep investigating with our eyes wide open. - Deborah Simons-Johnson,MS, CCC-SLP, IBCCES Advanced Autistic Specialist Autism and the World According to Matt Click to Purchase - through Amazon Reviews: 5.0 out of 5 stars The World According to Matt Shines Light on Autism “They say you must walk a mile in another person’s shoes to really know them. Liz Becker is an Autism Mom who walks a marathon in her autistic son’s shoes and details it beautifully in her book Autism and The World According to Matt: A collection of 50 inspirational short stories on raising a moderate/severe mostly non-verbal autistic child from diagnosis to independence. This delightful collection of stories is a love letter from a mom who refuses to accept the 1990 view of autism that is imposed on her son, and instead embarks on a journey to uncover the beauty of who her son really is. The stories encompass everything from the trials and tribulations of potty training to helping Matt get his own apartment. Becker’s style of writing evokes an Earl Hamner simplicity, making you feel as though Walton’s mountain has visited the land of Autism. The result is lush and beautiful, you feel as though you are a part of the family that continually gathers ranks to protect Matt and help him safely make his way to independence. Readers will find themselves laughing along as both mother and son find the way to communicate in a world filled with complexities, half-truths and unrealistic expectations. They will cheer as Matt enjoys victories large and small and, like me, they will likely shed a tear when the road blocks seem just too tall to scale. Do yourself a favor and read this inspirational book from a Mom who helped to forge a path for Autism parents before Autism Speaks, before insurance reform and before there was any reason to hope.” - Shannon Penrod, Host, Autism-Live Book Reviews for Autism and the World According to Matt Inspiratonal, January 11, 2014 By Margaret ". . . . I am an Exceptional Student Education Specialist for a public school system. This family’s compelling journey will be a recommended read to my colleagues as an example of what a child with a moderate-severe autism disorder is truly capable of achieving, both in a supported home environment and in the general education setting." 5.0 out of 5 stars I cried. I laughed. I love this book . December 31, 2013 By Kay Schwink "I am the sibling of more than one autistic person. I, too, am "on the spectrum". It is rare to find someone who can so eloquently express what it IS to be autistic. I cannot pretend to know the struggle of Matt and of his mother, for my autism is "high-functioning". This book, however, made me FEEL as if I could understand and know what it means to love, or, be, or teach a "moderate/severe, mostly non-verbal" autistic person." 5.0 out of 5 stars I LOVE MATT'S WORLD December 31, 2013 By Esther Flores "This book shares all the raw emotions of both laughter and tears that go along with the Autism world". 5.0 out of 5 stars Honest humor January 4, 2014 By Marilyn Garnto ".... Her honesty with a perfect pitch of humor is a great read as we all struggle to understand and encourage children to find their happiness how ever that may look in their world". 5.0 out of 5 stars A Must Read January 1, 2014 By Bryan "A must read for teachers, parents, siblings or anyone who is interested in autism. ... She navigates and expands the boundaries of autism with humor and sometimes a few tears." 5.0 out of 5 stars Well done ! January 8, 2014 By S. Keller "Special education teachers and health professionals, especially, need to avail themselves of this resource that Liz and Matt have made available to all of us". 5.0 out of 5 stars The World According to Matt, a superb read, - Autism Daily Newscast February 7, 2014 "What instantly struck me while reading was the incredible bond between Matt and Liz and that most importantly she saw and still sees the world today through Matt's eyes"

Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt Our Global Community We try to find resources for every country, and state within the USA. Local resources are also available for our area. If you have suggestions, please contact me. Global Resources State by State Community Resources AUSTISM-LIVE Be a part of our global map! You visit - then you are added. It updates once a day. Welcome!

Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt Artwork Photo Album of Artwork Matt drawing in his room - age 7 I knew Matt was artistic from early on. He loved looking at things from all perspectives and went through reams of paper per week. He would draw on the back of all of his homework papers and in class assignments.Drawing became his passion. Yet, he could not draw pictures of landscapes or people. Instead he focused on trains and power lines. I soon noticed that he had an interest in animation and explained to him that he would have to learn to draw other objects in order to animate an entire scene and he began to notice more of his world. He practiced drawing hands, faces, eyes, chairs, buildings and others. Drawing tablets became a "have to have" item and he collected different types of pencils, erasers, and straight edges. Take a look at his progression in the artwork photo album and read the blog on World According to Matt - Art Transforms a Mind. Matt's Artwork Matt is holding one of his drawings of the firemen at ground zero after 9/11 Architecture Free hand from memory (it took him less than 15 minutes to complete). Less than 5 minutes to draw (he was in the sun and "too hot" to draw). Animation Photography - an eye for patterns and light.

Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt About the author - Liz Becker Personal: I have 2 children and Tom has 2 children both now in their 30s. Matt is my youngest. Professional: Teacher - I teach biology, microbiology, and anatomy and physiology for Wytheville Community College and for Radford University. Clinical Scientist - I worked in the lab for over 16 years before going back to school. Research Scientist - spiders . . . yep, spiders. I researched how male funnel-web spiders subdued the female prior to mating and found it to be a pheromone. You can check out my research by clicking here. I worked toward my doctorate at Bowman Gray School of Medicine at Wake Forest University in the department of Neurobiology and Anatomy but found I just couldn't juggle the demands of 2 teenagers (one autistic) at home. Besides, my schedule really needed to be on par with Matt's.... so I backed up, and got my Master's (in Education) instead. I always thought I would go back and finish but something peculiar happened - I found I actually love teaching! No regrets.... Author - Autism and the World According to Matt 2-part series on Autism Daily Newscast The four-part series has begun on Autism Daily Newscast- and can I just say....... how AWESOME is this? I am having the time of my life with this book: the reviews, the invitations. I am overwhelmed and honored by all of it!!! Part I - AUTISM DAILY NEWSCAST Part II - AUTISM DAILY NEWSCAST From the local Newspaper: "Mom's autism blog reaches around the world" Source: tricities.com via Liz on Pinterest Here's the link to the story in the local newspaper, Southwest Virginia Enterprise Radford University Interview This is my Alma mater - and so proud to have been asked to be interviewed for the RU Today online magazine, and featured in today’s edition of From the Dean’s Desk - the news and events section for the College of Science and Technology. Biology Alumna and Autism Advocate Shares Stories with the World My 15 minutes of fame as a scientist .... Here's my research on spiders - in case you are interested in that kind of thing.... Male induction of female quiescence/catalepsis during courtship in the spider, Agelenopsis aperta http://www.mendeley.com/research/male-induction-of-female-quiescencecatalepsis-during-courtship-in-the-spider-agelenopsis-aperta/2005 (Male induction of female quiescence/catalepsis during courtship in the spider, Agelenopsis aperta by E Becker, S Riechert, F Singer. Behaviour (2005. Volume: 142, Issue: 1, Pages: 57-70 ISSN: 00057959). Contact Me Contact me by email - click here.

Matt meets Vice-President, Joe Biden! Yep, we went to Spiller Elementary School in Wytheville, Virginia to hear and see Vice President Joe Biden. After waiting 4 hours - on our feet - Joe arrived. During the speech Matt took picture after picture. Then at the end of the speech, VP Biden stayed to shake hands and meet the people. Not only did Joe shake Matt's hand - he signed Matt's t-shirt. Matt is a big fan of Obama / Biden and this event brought more happiness than anyone realizes. Thanks Joe, for putting that beautiful smile on my son's face today! Joe signed Matt's t-shirt. We framed it and it is now hanging in Matt's bedroom. He is so excited - what a great experience! Welcome Joe! August 14, 2012 - the visit to Wytheville, Virginia. Vice-President Joe Biden Alicia Ring (classmate from high school) was there also - too cool! The event of the summer - for Matt! Matt - on Google Images of the event The signed t-shirt! From left to right: Matt, Tom and I Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt

Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt Diagnosed with Severe to Moderate AUTISM in 1988 A wonderfully unique individual! Interview with SJ Childs - This is Matt Adventures in photography Matt's Artwork over the years Symptoms and behaviors at diagnosis (age 2 1/2) Looking back over the last 26 years I feel nothing but pride for my son, Matt. Autism makes a child different than their peers in areas of learning, communication, speech, emotions, and even in health issues. It forces them to use very creative ways to learn to enmesh themselves into a world that can be confusing and sometimes hostile. The amazing thing is that they do and continue to move forward, against all odds. Maybe Matt is different than other autistic individuals, but I doubt it. I know the autism spectrum is vast, with varying degrees of severity and symptoms, but I don’t feel others can’t learn and move forward as Matt has done. Am I being overly optimistic? I don’t think so. I truly believe all children can learn. Sometimes it just takes longer and the road is more difficult, but learning remains dynamic – not static – regardless of his age. Each year I can reflect on the accomplishments my son has made and set new goals for the year ahead. I find I am constantly in awe of my son; his perseverance and courage define him in my heart. At diagnosis I was told that he was “moderately-severe”autistic. The doctor told me the only reason he didn’t get the “severe” title was because he did not harm himself, other than that he was classically autistic having every text-book symptom. They didn’t wish to saddle him with the severe moniker, but they stressed his severity. In the doctor’s next breath he recommended institutionalizing my son, adding he would be too tough for me to raise and that I didn’t understand how difficult it would be on my family. I bring this up to illustrate where we started on this journey. Don’t assume that the reason he has done so well is due to a milder form of autism…. don’t assume any degree of autism is easy…and don’t assume a child’s autism will ever go away. We have had our struggles and our bad days, but the good days out-number them by far. You have heard the saying, “It takes a village” and we met some great people along the way that had a wonderful influence on him – a village load of people. As a parent – to any child, not just an autistic one -it is normal operating procedure to try our best, learn about our child’s needs, and seek out the right path. In comparing a neurotypical child to one who happens to be autistic, the only thing different in your quest are the specific needs and the amount of time devoted to those needs. For me, figuring out what he needed required me to understand what he was going through. It took lots of time, lots of observation, lots of trial and error, and above all else, lots of hope. In 1988 these were Matt’s symptoms as listed on his medical record. Social interaction Avoids eye contact Difficulty in understanding facial expressions or body gestures. Lack of interest in people. Lack of empathy. Doesn’t want to be held. Anxiety in a crowd Communication Delay in, or lack of, speech, or echolalia. Difficulty in starting a conversation or continuing a conversation. Difficulty understanding sarcasm or humor in language use. Appears not to hear, doesn’t respond to their name. Types of play. Spinning toys or just the wheels on toys. Lining up toys in long lines. Fascination with a particular topic. A need for sameness and routines. Lack of imaginative play. Plays alone. Sensory Reduced sensitivity to pain Hypersensitivity to sound, taste, and sometimes light. Stereotypical behaviors. Body rocking. Hand flapping. Spinning. As Temple Grandin has said, autism is based in fear – fear of all the unknowns of this world, from how to communicate to reading facial expressions to trying something new. I understood his fear. I was gentle in my persistence to communicate with my son and it paid off. Once he understood I was there to comfort him and fight the fears with him the learning began. We moved ever forward, sometimes at a snails pace, and other times with leaps and bounds. Now let’s look at my son as he is today – 24 years after his autism diagnosis: Social interaction with others is still an area that we work on daily. He converses, even when it’s difficult for him, and as he does so, he looks into your eyes. If you smile, he smiles. Matt has an interest in the people he knows and loves. If someone feels bad or is happy – so is Matt. I have found that Matt actually has more empathy than most neurotypical individuals. He cares deeply about his family, his pets and his home. He will stand up to another person if he feels that person is wrong in their behavior and he always champions for those whom he feels is weaker. He is uncomfortable at times around people he hasn’t officially met, but an introduction opens the door to acceptance. He can be in the middle of an enormous crowd of people he doesn’t know without showing any signs of apprehension as he has learned to focus on other things. Actually, Matt enjoys the adventure of going out. Football games, flea markets, beach combing….crowds are just not a concern anymore. Communication . In the early years I was most worried about his ability to speak, as I knew the brain would stop attempting speech around 5 years old. If he didn’t speak by age 5 his chances of ever being able to speak would be minimal. I have read that 40% of all autistic children have no speech – that’s a very scary statistic . .. and a very sad one. Matt began speaking just before his 5th birthday. We passed through the echolalia stage next (about2 years worth) and then his speech seemed to improve yearly. He developed a wonderful sense of humor, gained insights into neurotypical behaviors and speech and adapted his own behaviors to more closely resemble what he saw. Types of Play. As a young child, Matt spun toys and the wheels of toy trucks, trains, and cars. But as he learned new outlets for communication and imagination; in art, games and books - the spinning stopped. Matt still has a fascination for particular topics but he has expanded his interests to many new areas. Although he still likes to be alone for several hours each day, he also enjoys being with others. Keeping to routines are mostly a thing of the past also, (with the exception of Friday night pizza), there really are no set in stone routines anymore. Sensory . Matt still has some hypersensitivity and certain sensations can still cause discomfort on occasion. His showers are still luke-warm and his room dimly lit, but he doesn’t avoid loud sounds anymore. He is still very particular about what he wears, especially on his feet, but he has overcome a tremendous amount of hypersensitivity in his clothing. He tries new foods – doesn’t eat them, mind you – but he will taste-test. There's always that hope that any day now he could add a new food to his limited menu. Pain, unfortunately, is still an unknown. We are always vigilant for signs of pain because we are unsure if he would reveal his pain to us before it becomes life-threatening. But a recent illness showed me that he could take care of himself with rest, fluids and medication all self determined and administered. Stereotypical Behaviors. These are a thing of the past. We haven’t seen any for many, many years now. Matt is 26 years old and we take each step forward now at his pace. I accept Matt for who he is and I don’t push him to change any particular behavior – instead I suggest various ways to achieve the things he wants and help him focus on the steps toward his goals. If he never changed another habit or behavior he would still be the light of my life and me his proud mama. Matt chooses what to change, what to improve on, and what is fine just the way it is. When new challenges are met or old ones are overcome, we celebrate in this house – not because we want him to change, but because Matt sought to change - it’s always a big deal, and it always has been. I recognize that he is continually trying to be the man he wants to be and I am in awe of his courage and willingness to do what it takes to accomplish that goal. I can honestly say that his progress has been one unexpected joy after another and that’s because I remember where we started. Each year we fought battles, met challenges head on and set new goals. It wasn’t a picnic, but it wasn’t all doom and gloom either. Life has been an adventure, and not just for Matt. I know I am a better human being for having the opportunity of sharing my life with this incredible young man. Many years ago I was asked if I believed in miracles. Without hesitation I replied, “I see them every single day”. I was of course, referring to Matt and the wonderful way each day provided some tiny step forward, some steps so small you would miss them if you weren’t looking. I’m always looking- eager to witness that next miracle. Each time I see a small step forward my heart is filled with hope that my son's dreams will be realized. For those new to raising the autistic child, I send you that same hope. Hope - that you see the tiny steps. Hope – that you see and understand the courage it takes to make those steps. Hope – that autism as a disability will not define your child, but autism as a uniqueness will be seen instead. Hope – that your child’s dreams will eventually be realized. Hope.......that you too will witness miracles every day. To Know Matt - you really need to read the stories . . . . Matt's Awards From early on Matt received awards - for silly things at first, then good things, then great things. Take a look at the progression over the years - THE AWARDS.

World Autism Awareness Day On April 2, Autism Speaks, the world's largest autism science and advocacy organization, will mark the annual celebration of World Autism Awareness Day – a global effort to heighten awareness about a disorder affecting millions of individuals and families around the world – with a series of high profile awareness events and initiatives. World Autism Awareness Day (WAAD) was established by a resolution passed unanimously by the United Nations General Assembly in 2007, making autism one of only three health issues to be recognized by the UN with its own “day.” World Autism Awareness day - 2015 April is Autism awareness Month - Can we please stop stimming? (the Word - not the Behavior). Stimming? Seriously? Oh Please! Autism awareness for me means doing what I can to dispel the myths and inaccuracies of what is and isn’t autism. This year I would like to talk about stimming – it’s a derogatory, inaccurate term and I would like to see it melt into the past, like institutionalizing autistic children. It’s called “Stimming” – short for self-stimulatory behavior – and it’s an all-encompassing term for the seemingly odd behaviors seen in early childhood autism, like the flapping of hands. Who am I to want to demand a change in medical terminology? I’m one of the first autism moms - from before the surge in prevalence. My son, Matt, and I have been doing this for a long time and in my opinion the term is highly inaccurate. I see no “self-stimulating” behavior, and the words themselves feel derogatory, as if my child was unable to feel anything and had to flap to simply stay awake. My son was diagnosed with regressive childhood autism in 1988. The severity of his disorder was brought home by the recommendation by an entire team of specialists to institutionalize him – he was only 2 years old. I went against that recommendation and brought my moderate –to-severely autistic, and mostly non-verbal, son home instead. We learned about autism the old fashion way – by observation, trial and error. We have navigated the choppy waters of autism, and pushed the boundaries of what experts thought autism was, for Matt’s entire life. Years ago when the term, “stimming” entered the conversation on autism I thought my head would explode. Seriously? People really think they need to self-stimulate? Think about it a moment…. A child who is bombarded by huge amounts of environmental stimulation coming at them from lights, sounds, textures, tastes, etc., does not need to self-stimulate to “feel” anything. They already feel way more than the neurotypical child. It’s another one of those phrases that begs the question, “Who came up with this stuff?” For Matt, the behavior made itself known through his hands - a twisting of his hands at the wrist – back and forth, back and forth, and flapping on occasion, just to mix things up a bit. So, while he didn’t actually flap his hands constantly, he did move them constantly. The term didn’t exist for this type of behavior – but the doctors and therapists at the hospital where he was diagnosed certainly had an opinion about it – I was to stop him from doing it. Grab his hands and hold them still. And like a good little drone, I did – for about 2 weeks. Within those 2 weeks I was observing my son, watching and learning and wondering why he would “self-stimulate”. I came to the conclusion that it was emotional communication trying to be released from little boy who had trouble getting his emotions out. When he was excited, those hands were turning quickly – almost a blur. When he was content they moved in a slow, methodical rhythm that denoted calm. When he was anxious – they flapped. Communicating emotion is much more difficult then say, wanting a drink of water. Wanting a drink he could point to the glass or to the faucet or to the refrigerator. Wanting to tell me he was joyful and excited? Hmmm….. Nothing to point at. His emotions were in his hands. Communication was in their movement. Do I really want to grab his hands and make him stop? To be fair, I am only an expert on Matt – not autism. I couldn’t tell you about other autistic children. I was only able to read Matt’s behavior and observe the link to his emotions. Actually, there were no other autistic children around at the time – Matt had a rare 1:10,000 communication disorder called autism, and no one had ever heard of it. There was no Internet – no one to share notes with or compare behaviors with. So maybe, just maybe, his “stimming” was different than other autistic children – and only another parent can say whether or not they noticed the connection to emotions too. Feel free to let me know. I do know that as he got older, and could communicate better with facial expressions, his hands didn’t twist or flap as often, and when a few words made it into his vocabulary that could describe how he felt, the flapping went extinct. Stimming – it’s an awful word that suggests a child is not communicating with his environment – and feels nothing….. I hate the term. It has nothing to do with autism. Emotional communicating behavior would have been more accurate. And as for holding his hands still? As I said, after a few weeks of doing what the “experts” suggested I just gave up. I watched him twist and flap and I knew his brain was working on how to repair communication roads. I felt – I knew – that he was doing it for a reason, and I would not interfere with the process. It came to me one bright, sunny morning. We were sitting in the kitchen, my husband and I, and Matt was on the back deck just twisting and twirling around. How old was he? Three? Four? He had his Hot Wheel cars and a ramp to run them off of, and oh my, was he just the happiest little fellow. My husband looked at me and said, “Shouldn’t we stop his hands from doing that?” “No” I replied – a smile on my face. “Look at his joy . . .” We watched the happiest person on earth roll one car after another along the ramp and into a flight pattern across the deck. Each car then crashed several feet away and the response to the flight / crash sequence was pure joy. Matt twirled in a circle and twisted both hands over and over, until he went to pick the next car for next aerial mission. “He’s so happy . . . let him flap”. And I never again quieted his hands. Turns out I didn’t have to. Matt did it himself, in his own time. The years flew by and those “stimming behaviors” (ugh! Just using it here hurts . . .), disappeared for the most part. Matt grew and learned and moved forward every year. He graduated number 4 in his class, with honors, in 2005 (the same year Autism Speaks was founded). In 2013 he moved into his own apartment. Matt is again doing the impossible – (still a trail blazer, that one), and I am so very proud of him. My advice to those new to autism and the flapping – let’em flap. And during the month of April – Autism Awareness Month - can we please push to change that terminology from the inaccurate “stimming” to something more accurate, like “emotional communication behavior”? Who’s with me? World Autism Awareness Day – April 2 - has rolled around again and the battle cry for acceptance instead of awareness is again all over social media. The acceptance campaigns complain about awareness and try hard to convince us that awareness is no longer needed – such an awful thought. There can be no acceptance without real awareness and many people – especially the mildly autistic - seem to have a difficult time understanding that. Shall I share a secret? I think of those on the spectrum and hereby confess that I am still seeking awareness myself – even with having raised a moderate / severely autistic child for 29 years! Acceptance has never been the issue - ever. Awareness however, that’s a different story. You hear people say, “If you’ve met one person with autism, then you’ve met one person with autism” – but they don’t really seem to understand that phrase. Let’s see if I can get this across without offending half the people with autism. I’m betting I can’t . . . because awareness is still lacking in most of the autism community about others on the same spectrum. Hold onto your hat . . . The high-functioning side of the spectrum has advocates and writers and people whom recognize their autism and have a voice. The problem is most can’t seem to see the difference between themselves and an individual on the opposite end of the spectrum – those not in the high-functioning range like themselves. Some are professional people with spouses, kids, careers, and talents that can shine brightly and bring comfort and empowerment to others like them. They may have difficulties in some areas of socialization, or with some environmental stimuli, but they enjoy life – a full and wonderful life - where they are free to pursue those dreams and be those advocates, but unfortunately, in reading their stories I find they seem to have no clue to the difficulties of others with autism along the various degree -points across the spectrum. Sometimes their words even come off as cold-hearted, and I admit that I have stopped reading their books and articles as a way to help my own son - because, quite frankly, they demonstrate a lack of awareness of autism as a whole. Now don’t go taking that all wrong. Their stories are still valued as they reveal something else - a way to embrace their unique qualities, take pride in their differences, and while this type of awareness is glorious (good for them), they don’t speak for my son. To see things from their point of view has been difficult for me. Not one article or book has changed my view of my own son’s autism or given me an ‘Ah-ha’ moment as to how to help him. Sorry, but it’s true. Nevertheless, I kept reading them for a different reason – as a way to open my mind to see things through their eyes, at their level of autism. I admit I did find them helpful in understanding a few of my friends on the milder side of the spectrum – and for that, I thank them. In my own search for awareness of the milder side of autism I have found it even more comforting and understandable in conversations with a dear friend of mine, Kay, who is high-functioning. She has been wonderful and enormously helpful in illuminating the struggles of an autistic woman on that end of the spectrum. But she’s a rare one. Many I have asked fairly simple questions of, just shut me down, as if it were insulting to them to share with a non-autistic person. But most high-functioning advocates really are a blessing to the awareness of high-functioning autism. Unfortunately, many in that group are pushing to drop awareness campaigns in favor of acceptance campaigns – and yes, there is a difference. For the most part, those talking the loudest about autism and acceptance have so little in common with my son that I find their complaints on acceptance to be rather petty in comparison to Matt’s struggles. Yes, I just said that most sound ‘petty’. I’m being truthful here, not looking for Brownie points. Try to envision it from my point of view. I see mildly autistic individuals with jobs – good careers - and I see them having a spouse and children – a nuclear family with friends – an actual support system. Here are people who enjoy the freedom to live their lives as individuals, make choices, strive and reach monumental goals. They have a voice! They are being heard. Woohoo! Good for them! But . . . as I read and listen to them I realize they have very little in common with the struggles of my moderate / severe autistic son. I have even been attacked on social media sites more than once for talking about the struggles of my son and by those who claim to have autism. They seem to feel they know more about how to raise him than I do. It’s hard for me not to think their unaware of the spectrum. Their concerns seem fairly minor to me when my main goal for 29 years has been to keep my son from being institutionalized - so, in my mind, in my world, their grievances seem petty in comparison. Their remarks simply reveal an unawareness of a spectrum. Do you get that? I would give anything for Matt to have such opportunities in his life, for things to be as “easy” for him. Oh for heaven’s sake, don’t go jumping up and down and pounding your fists quite yet – I am not saying their concerns are minor to them – only to me in comparison to my son. Yes, they have a right to push for more acceptance of who they are, and their drive and courage is not something to be ignored or belittled by society – but they are the ones in the news, the ones screaming for acceptance and shunning awareness (as if we don’t need it anymore) and thereby keeping the autism light shining on their struggles – and their struggles don’t match up very well at all with my son’s struggles. I say, go ahead, strive for acceptance for those similar individuals on the higher end of the spectrum, but stop complaining about awareness campaigns. Awareness to me is everything. You see, my son was raised before autism’s giant surge, back when the prevalence was 1:10,000 and no one – not even his own doctor – knew what autism really was. Matt had already graduated high school by the time an awareness campaign was even conceived. We did this – got Matt through school, taught him interactions and how to be responsible enough to live on his own - without awareness and I know just what awareness has done for him since – it’s a big deal. HUGE! Awareness means when he joins a recreation center that others know how to speak to him. It means police officers will know what not to do that would cause him harm and anxiety and stress. It means his doctor knows that just because he says he’s fine, doesn’t mean he really is. Awareness if absolutely gigantic for Matt maintaining his independence! So while those on the high-functioning end are wanting to scrap awareness and push for acceptance, those on the moderate end of the spectrum still need that Awareness, thank you. And let’s go a step even further – Awareness is desperately needed for those on the severe end. The severe end never makes it into the news. Those parents don’t have much support at all. Awareness could do wonders for them. I read about those parents’ who truly need help 24/7 with their grown severely autistic children. They struggle just to maintain hope. They are in constant need of support – emotionally and physically. Every day they search for a way to cope with a life they never saw coming, a child that is massively loved, but taxing on the mind and body. They do everything they can to help their child – love has no boundaries in such things. Their children – grown or not - have no bowel control and wear diapers, they wear headgear to prevent self-inflicted brain damage because they tend to slam their head repeatedly into walls. Their daily activities include washing feces off walls, trying to feed them, trying to take them for a doctor visit, trying to communicate with their child. These autistic individuals – on the severe end of the spectrum - can’t speak a word and are trapped in a body they have no control over. Why can’t awareness campaigns shine a light on them? The world needs to hear their plight also and in hearing and becoming aware of severe autism something could be done to help these families in crisis. Maybe autism research would ramp it up a bit - find the cause, find the cure? How very different from the milder, high-functioning side of the spectrum to the severe end. Now see if you can find that common thread between them that gives each a diagnosis of autism. They are like night and day and the threads of commonality are hard to see, aren't they?. In any awareness campaign for autism the first thing the public needs to know is that autism is an idiopathic neurological disorder – basically, brain damage. Just the word “damage” makes those on the higher end fill with rage – but awareness would let them realize that autism IS damage. It matters how much has been done to the brain. So whereas a little damage can be embraced as making one unique, a lot of damage can be a lifetime of being trapped in a body you can’t control and voiceless to communicate your needs. Matt has little in common with the severe end also, but much more in common with those individuals than he does with the high-functioning end. I have found that it’s very hard to find that common thread throughout the spectrum unless you really, seriously, look for it. We are fortunate that Matt does speak some (even though he is mostly non-verbal) and that’s a huge deal in communication efforts. He can do so much more because he can make he needs known in one form or another (gesture, facial expressions, voice) and he’s not self-injurious. That last one was actually why he was given that “moderate / severe” diagnosis - because he lacked that one single trait – injurious behavior. It’s a ginormous difference. Don’t ever think it’s not. Matt is unique – just as each child on the spectrum is. I am an expert in my child’s autism – just as each parent is for their own child. We share a common thread, the parents of autistic children, but we are as different as our children. And so all I can really do to help the autism community is to spread awareness of what I know. I write of my own path with my son – what helped, what didn’t, what he can do, what he can’t do - yet. In sharing my stories I may be able to help someone, somewhere, who has a child with more threads in common on the spectrum to Matt than to either high-functioning or low-functioning,(from those whom are mild or severe autism). And as I work with Matt I am still trying to be more aware of the differences of those on the spectrum – but it’s hard. After all, isn’t it human nature to want to discuss the similarities? But Awareness is about the differences. What can you do to be more aware? Focus on each child’s individual needs: his talents, his capabilities and areas of struggle. Stop comparing this one to that one as to which is learning faster or more. Remember, Autism is an idiopathic neurological disorder – basically brain damage of unknown origin (yep, I just said “damage” again!), and until people get that – get that the damage can be mild or severe or literally anywhere in between, then awareness campaigns must and should continue. Just I as I am only an expert in Matt’s autism – not autism in general – and therefore do my best to shine a light on the autism level he has: his struggles, his successes., I urge those on various points along the spectrum to shine a light on their specific level of autism and to please stop making generalizations about autism as a whole. Let society see that autism takes many, many different forms, contains various levels of ability, and involves a plethora of struggles. And yes, keep in mind that if you’ve met one person with autism, then you have met ONLY one person with autism. It really is that simple. Be aware that to increase your own awareness of autism you will need to seriously dig past that comfort zone and really examine the full spectrum. Try to understand that autism is NOT just some evolutionary leap within the brain (as many people tend to believe) . . . Its brain damage (I’m sorry, but it is). Take heart in the fact the brain can repair some of that damage by re-wiring itself as the child grows, and it will continue to do so throughout an individual’s entire life-span. That means a child’s environment – both at home and in an educational setting – will have an enormous effect on the continued growth and success of that specific child. Keep in mind that the amount of growth will also be determined by just how much damage was caused initially. Now, combine the degree of brain trauma with the overall learning environment - this is why there is a spectrum. In addition, there’s lots of variables that can influence the brain’s ability to heal. Now, think about the prevalence of this idiopathic neurological disorder as it nears 1:50 children. An epidemic of children with brain damage, ranging from mild to severe and everywhere in-between. Maybe now you understand why I continue to stress that “Awareness Is Everything”. Take the time to share your experiences with others - spread the awareness! Light it up blue Autism Speaks promotes autism awareness each year by asking for major structures around the world to be lit with blue lights starting on the evening of April 1 - 2. Although thousands will turn blue for the night, our own White House has yet to join the movement. Send your own note to the president to please light the White House blue. How will you light it up blue? A single blue bulb lit on the front porch is enough to get the conversation going. Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt

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