|On April 2, 2012, the world marked the 5th annual World Autism Awareness Day. The day was established by the United Nations General Assembly in 2007. It 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 “go blue” during the month of April in the “Light It Up Blue” global autism awareness campaign.
It’s hard to imagine that not that long ago autism was considered a rare disorder. Allow me to reflect back on those days. It was so very different then. I look back over the last 26 years and what I really feel is pride for my son, Matt.
Autism can make a child different than his or her peers in areas related to learning, communication, emotions, and even health. It often forces the child to use very creative ways to learn to enmesh him- or herself into a world that can be confusing and sometimes hostile. The amazing thing is that s/he continues to move forward against all odds.
Maybe Matt is different than other autistic individuals, but I doubt it. I know that the autism spectrum is vast, with individuals presenting different symptoms at varying degrees of severity, but I still believe that others can learn and move forward as Matt has done. Am I being overly optimistic? I don’t think so. I truly believe that all children can learn. Sometimes it just takes longer and the road is more difficult.
Each year I reflect on the accomplishments that my son has made and set new goals for the year ahead. I find that 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 that the only reason he wasn’t categorized as “severe” was because he did not harm himself. Other than that he was classically autistic and had every textbook symptom. Although they didn’t wish to saddle him with the severe moniker, they stressed the severity of his autism. In the doctor’s next breath he recommended institutionalizing my son, adding that 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, but the good days outnumber the bad days by far. I’m sure you have heard the saying, “It takes a village to raise a child.” We have met some great people along the way– a village load of people – that have had a wonderful influence on my son. As a parent to any child, it is normal operating procedure to try your best, learn about your child’s needs, and seek out the right path for him/her. As a parent to an autistic child, the only thing different in your quest are the specific needs of the child and the amount of time devoted to meeting those needs. For me, figuring out what Matt needed required me to understand what he was going through. It took a lot of time, observation, trial and error, and above all else, 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 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 my son’s fear. I was gentle in my persistence to communicate with him 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 snail’s 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. 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, so does Matt. If someone 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 and he always cheers for the underdog.
He is at times uncomfortable 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 whether it be to football games, flea markets, or the beach. Crowds are just not a concern anymore.
Communication. In the early years, I was most worried about Matt’s ability to speak, as I believed that the brain would stop attempting speech around 5 years old. I worried that if he didn’t speak by age 5, there was a chance he might never be able to speak. 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 (after about 2 years) 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 once he learned new outlets for communication and imagination, the spinning stopped. Matt is still fascinated with 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 issues and certain sensations can still cause him 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 self-administered.
Stereotypical Behaviors. These are a thing of the past for Matt. We haven’t seen him demonstrate any for many, many years now.
Matt is 26 years old now and we take each step forward 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 for him to achieve what he wants to achieve and I help him focus on the appropriate steps to take toward his goals. If he never changed another habit or behavior, he would still be the light of my life and I would still be his proud mama.
When challenges are met or overcome, we celebrate in this house, not because we want him to change, but because Matt sought change himself. It always has been and always will be a big deal. 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. Witnessing his progress has been one unexpected joy after another, especially when I think back on 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.
Matt was the first child with autism to enter our local school district and that means we paved the way for those who came after him. His academic excellence, participation in social events, and graduation with honors showed his teachers just how amazing autistic children can be.
Life has been an adventure, and not just for Matt. I know that I am a better human being for having shared 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 he made a tiny step forward each day. Some of the steps were so small that 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 an 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.
This is a modified version of an article that first appeared on the blog, World According to Matt.