For World Autism Day I am sending you HOPE
Monday, April 2, the world will celebrate the 5th 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 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.
• 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. 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 to 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.