|Posted on March 31, 2013 at 7:50 AM|
Tuesday, April 2, the world will celebrate the 6th annual World Autism Awareness Day. The day was established by the United Nations General Assembly in 2007 - in a landmark resolution that passed unanimously and became only the third health issue to be given its own day of recognition across the globe. Some of the tallest buildings in the world will “go blue” tonight to ignite the “Light-it-up-blue” autism awareness campaign for the month of April. It’s also a time for reflection. Looking back over the last 27 years I feel nothing but pride for my son, Matt.
As parents we realize that having autism makes a child different than their peers in areas of learning, communication, speech, emotions, and even in various health issues. It forces them to use very creative ways to learn to enmesh themselves into an environment that is confusing and sometimes even hostile. The amazing thing is that they do. My son has continued to move forward, against all odds. He is comfortable now with who he is. He has pushed himself and has made strides far greater than anyone had predicted . . . except for me. I always held on to hope.
Maybe Matt is different than other autistic individuals in the things he has overcome, but I can't help but feel the possibilities are there for others like him. I know the autism spectrum is vast, with varying degrees of severity and symptoms, but I don’t feel others can’t learn or move forward too. Am I being overly optimistic?
I truly believe all children can learn. Sometimes it may take longer and the road may be more difficult for someone with autism, but it can be done. Learning is dynamic – not static – regardless of his age, regardless of his autism. Each year I reflect on the accomplishments my son, Matt, has made and we set new goals for the year ahead - small achievable goals. It's slow, but it's not a race. Time is not the issue nor the focus - achieving each goal is the focus. In reflecting on his past, where we started on this journey and how far he has come I find I am in awe of my son; his perseverance and courage define him in my heart.
At diagnosis I was told that Matt was “moderately-severe” autistic. He had regressed into autism just before his 2nd birthday. Autism was rare; 1:10,000. The doctor told me the only reason he didn’t get the “severe” label was because he did not harm himself, but other than that, he was classically, severely, autistic - having every text-book symptom and behavior. Although they (the team of doctors) didn’t wish to saddle him with the severe moniker, they still stressed his severity and recommended institutionalizing my son. They rationalized that Matt would be too tough for me to raise and told me that I didn’t understand how difficult it would be on me and my family.
This is where we started on this journey. I don't want anyone to assume that the reason he has done so well is due to a milder form of autism…. and please don’t assume any degree of autism is easy…or, that a child’s autism will ever go away. Over the years there have been good days and bad days - but the good days out-number them by far. I'm sure you have heard the saying, “It takes a village” and we met some great people along the way, people who cared about his abilities more than his disabilities - and they have had a wonderful influence on him. 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 my neurotypical child to my son with autism the only thing different in the paths I took were in the specific needs and the amount of time devoted to those meeting 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.
• 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
• 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.
• Reduced sensitivity to pain
• Hypersensitivity to sound, taste, and sometimes light
• Body rocking
• Hand flapping
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 long before reading about Temple's journey. I was gentle in my persistence to communicate with my son - verbal and non-verbal - and it paid off. Once he understood I was there to comfort him and fight the fears with him, be his voice and his champion, the learning began. We moved ever forward, day after day, year after year, sometimes at a snails pace, and other times with leaps and bounds. The changes were subtle at first, then bolder, and now I look at my son as he is today – 25 years after his autism diagnosis, and I am speechless.
This is Matt today -
Social interaction and Communication
This will always be an area for concern and we still work on it daily. He does converse, even when it’s difficult for him and for all accounts he is mostly non-verbal. When he does speak he looks into your eyes. If you smile, he smiles. Matt has a genuine interest in the people he knows and loves and if someone feels bad or is happy, Matt picks up on it. Matt has more empathy than most neurotypical adults I know and 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 has a good soul and a big heart. He conveys most of his communication in non-verbal language using his eyes, his body and his gestures and social interaction is now more about teaching others his language than teaching him theirs.
He is uncomfortable at times around people he hasn’t officially met, but an introduction opens the door to acceptance in both directions. 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.
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. But not being able to speak does not mean he can't understand speech. I have read that 40% of all autistic children have no speech – that’s a very scary statistic, and a very sad one, but it doesn't mean the autistic person does not understand you. We were fortunate in that Matt began speaking just before his 5th birthday. We then passed through the echolalia stage next (about 2 years worth) and then his speech seemed to improve yearly. He now says 2-3 sentences per day and these few words reveal a wonderful sense of humor, passions for various hobbies, knowledge in science and history, and insights into neurotypical behaviors and speech. He learned how to adapt his own behaviors to more closely resemble what he saw as "normal", allowing him to blend in better. Matt hates his autism and purposefully seeks out ways to be more like those he sees. This was his choice, not something we forced upon him. He examines simple everyday human behaviors and chooses which ones he likes and which ones he doesn't. He is still practicing, but so far his ability to incorporate the actions and behaviors he likes has made him quite good at blending in. People who meet him for the first time often remark they didn't know about his autism - until he tried to speak.
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 of history and science, national parks and hiking. 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.
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. Just last year he added chocolate milk shakes after tasting one.
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 viral illness showed me that he could take care of himself with rest, fluids and medication all self determined and administered.
Also a thing of the past. We haven’t seen any for many, many years now. Those behaviors that now-a-days are referred to as "Stimming" are long gone.
Matt is now 27 years old and we take each step forward at a pace he sets. 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 the goals he sets for himself. If he never changed another habit or behavior he would still be the light of my life. He is a man and as a man, Matt chooses what to change, what to improve on, and what is fine just the way it is.
Over the years when new challenges were met or old ones were overcome, we celebrated in this house. When he was a child I set the goals and we took our time in meeting each one. It wasn't a race, it was a goal and for most, slow and easy was the best route. Now Matt is a man. When goals are met we still celebrate – not because we wanted him to change, but because Matt sought to change certain things and did it on his own. I recognize that he is continually trying to be the man he wants to be and I am astounded by his courage and willingness to do what it takes to accomplish each goal.
I can honestly say that his progress has been one unexpected joy after another - 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. I want others to know there is light at the end of the tunnel - how bright the light depends on you.
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 ultimate goal - a place of his own - will be realized. This is that year. Matt will be attempting his independence - moving to a place of his very own - some time this summer. So much hope . . . about to be realized.
Remember, this wonderful man before me was once considered hopeless, unteachable, and unreachable by those that did not know him. Strangers would have had him institutionalized. There was no autism awareness. No one knew what they were capable of. We chose hope. Continued hope and working toward goals allowed Matt to graduate high school with honors. Hope and hard work will allow him to attempt independence. This is what hope can do.
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.