By D. Richards
I knew that October day would forever be ingrained in my memory. From the outset, I expected that I’d either be reassured that there was nothing to worry about, or I’d find my greatest fears confirmed. On that day, I barely felt the breeze in my face as I stepped out of the car and put on my sunglasses. I heard a freight train ramble on its way, as we headed into the Developmental Pediatrics Center downtown. I don’t recall much more because I was preoccupied, and had been for days. Finally, we were to meet with a specialist regarding concerns about our son’s development. My husband and I walked in together silently, holding hands with our two-year-old son (I will refer to him as dear child, DC).
By that time, we’d had DC in daycare for a few months. We had seen first hand how he behaved differently, compared to his peers. He lagged behind in most facets of development, but particularly in communication and socialization. It was difficult to get him interested in activities with peers, enough to participate. He lived in his own world, a world of meaningless vocalization, repetitive behavior, and obsession with items. We had observed his typically developing 10-month-old sister and noted marked differences. Each time I watched them, I was overcome by a fearful sense of foreboding. Through staff at DC’s daycare, we had connected with a local Early Intervention group. I heard phrases like, “tactile defensiveness,” and when I tried to read up more, I was shocked to learn of possible implications. Even as a physician, I was not very informed about ASD and such developmental disorders. I sunk into a state of denial, vehemently refusing to face the truth.
Neither my husband nor I had slept much in days. DC was going through a particularly rough time, sleeping very little, having temper tantrums every waking hour, throwing chaos and worry into our lives and our hearts. The Developmental Pediatrician spent a whole hour with us. At the end of it all, she stated very calmly, “By definition, he has Autism Spectrum Disorder.” I swallowed hard and shed a tear. My husband was stunned and speechless. In that very instant, our challenging yet loving lives as parents of a child on the autism spectrum formally began.
As you read this, you might nod your head in recognition of a similar beginning to your journey. You may think back to the past and wonder how you survived those impossibly difficult days, weeks, and months. If you are new on the journey, you may be relieved to learn that many others have gone through a similar process. This article is directed towards parents new on the journey. I’d like to share a few tips I learned over time that I hope will help you stay encouraged:
1. You are not alone in this. In 2014, the Centers for Disease Control (CDC) reported new prevalence data for autism showing that 1 in 68 children (1 in 42 boys and 1 in 189 girls) have Autism Spectrum Disorder (ASD). If these numbers aren’t clear enough, consider then an average kindergarten class might have about 21 children. There might be at least one child with ASD in a group of three kindergarten classes. Assuming classes with only boys, just for the sake of illustration, you may have one boy with ASD in every group of two classes. Imagine the number of parents and siblings living with a loved one affected by ASD. The take-home message is that ASD is very real and very present in our world. At every given time, there are many people new to the autism journey, and many others that are more experienced. Most U.S. states have outlets and support groups where autism families can meet, share experiences, and learn from each other. You need not struggle alone. Reach out to others for encouragement and sustenance.
2. It’s okay to grieve. I remember trying to get through the first few months and years after DC’s diagnosis, feeling low, depressed, and wondering about the future. DC’s ASD diagnosis was a blessing and a curse. Finally we knew what the problem was and could channel efforts meaningfully, but the very same diagnosis had many unpleasant implications. In retrospect, I feel that taking time to grieve helped me on my journey. Yes, DC was alive and kicking, but I had much to grieve about. DC would not develop language like other children, he might be looked at differently by some people, tantrums might continue for a long while, and I would have to get used to having a steady stream of therapists working in my home. My memories of getting my first child in school would not be about taking him to the bus and posing for a lovely picture, rather it would be about meeting a panel of school authorities for an Individualized Education Plan (IEP) meeting. Elisabeth Kubler-Ross wrote about the five stages of grieving; I believe those apply here also. Denial and isolation, anger, bargaining, depression, and acceptance – all stages that I have been through on my autism journey. You cannot reach the point of acceptance without going through the earlier stages of grieving. You cannot start healing till you’ve taken time to face the pain, disappointment, and trauma. Furthermore, you may have go back and forth with each stage of development, as you realize new challenges you may face as your child grows.
3. You cannot afford to be paralyzed by your grief. When my DC was three, I was mourning the fact that he could not talk and would not socialize with other kids. I could not attend play dates; he would run off or throw a tantrum; it was so stressful that I simply gave up. Once, a college student I asked to babysit, refused to return a second time, once she learned of his diagnosis, fearing that something might come up that she would not know how to deal with. When he turned four and headed to preschool, I mourned the fact that I had to attend IEP meetings and seemed to be in perpetual negotiations with therapists and schoolteachers. In kindergarten, I mourned the fact that at Valentine’s Day parties, I had to watch DC sitting in a corner while others sang, because he could not participate. In order words, you will realize new deficiencies with each phase of development and so you cannot allow yourself to be paralyzed by grief. You must draw support from wherever you can, and find a way to keep working on finding therapists, evaluating progress, and doing all you can to help your child improve. I have found that, over time, with adequate support, the pain and grief do subside somewhat.
4. Avoid the stress; it’s not worth it. Do you have friends who inadvertently make you feel even worse about your child’s situation, who like to boast about their children’s accomplishments in a thoughtless manner? Do you have family who tell you that you worry unnecessarily, that DC will get better with time and is, “Just a little slow,” when you know there is much more to it? Do you have people around you who insinuate that if you do so and so, DC might improve, like you don’t already do enough? Well, confront them and ask them to stop. If they persist, it may be time to cut them out of your social circle. You have too much on your plate and cannot afford to spend too much time and energy with people who tear you down, rather than build you up. You deserve much more, and once you cut out unnecessary people, you will have more time to attract a more supportive group. Seek out autism support groups and find other parents dealing with similar issues. Focus on people who encourage you to enjoy your child and celebrate his or her strengths and uniqueness. Listen to people who are willing to make productive suggestions to help you work on challenges. You will feel encouraged, rejuvenated, and alive; you will feel motivated to do even more for your child, to do better than your best.
5. Descriptive terms might make a difference. From the very beginning, I felt a twinge of resentment each time a friend or acquaintance would say, “He is autistic”, in referring to DC. I thought I was alone in feeling this way till I came across writing about people-first language. Advocacy groups first recommended this sort of language in 1988, as an option for describing people with disabilities. There is some controversy however, with some groups being in favor, and others not. For example, the people-first language has been universally rejected in deaf culture. My opinion is that each person has to decide what makes him or her uncomfortable and try to avoid it. I consider the word autistic to be all encompassing, implying that DC’s life is defined entirely by autism, and leaving no room for the possibility that there might be anything else worth discussing about him. Yes, my DC has autism, but he also has a lovely smile, is fascinated by the outdoors, loves organization and routine, and loves to read and play with his Legos. It has been therapeutic for me to have close family and friends use ‘has autism’ in describing DC, rather than ‘autistic’. I was able to eliminate a source of stress by a mere change in descriptive language.
Is there a possible advantage to starting with the above considerations? The answer is a resounding yes. You will start on a more solid path, better equipped to start tackling the challenges that might come.
Bio: D. Richards is a full-time physician, devoted wife, and mother. She hopes to share her experiences as a professional mom parenting autism, in the hope that others might reap benefit. For a number of reasons including protecting the privacy of her underage child, she prefers to write under a pseudonym.