Coping with autism challenges
Dr. Farrah Hughes, Director of Behavioral Health Services
We celebrated our baby girl’s 12th birthday almost two weeks ago, and we had a lot to celebrate.
Like all kids with autism, Rylie has had to work extremely hard to accomplish things that usually come naturally to others. She was diagnosed with autism spectrum disorder just before she turned 3.
It’s more common than many people realize. Approximately 1 in 59 children is diagnosed with autism, and boys are four times more likely to be diagnosed than girls.
There were early warning signs for Rylie. For example, she did not mimic facial expressions like typically developing infants do, nor did she like to be held when she was upset. She also did typical things, like laugh when we acted goofy. She loved interacting with us, so we weren’t sure what to make of the warning signs at first.
I don’t know why I didn’t recognize the warning signs. I am a clinical psychologist with a doctoral degree. I not only studied child development, but I also taught it as a psychology professor at Francis Marion University. Even with this advanced education and training, I felt utterly clueless as a parent. It wasn’t until Rylie missed some major milestones, like rolling over and crawling, that we knew something more serious was up.
Our pediatrician referred us to BabyNet and the Medical University of South Carolina Developmental Pediatrics. That was the beginning of Rylie’s early intervention, which included physical therapy, speech therapy, occupational therapy and applied behavior analysis (ABA therapy), as well as special programs in Florence One Schools.
Rylie developed speech when she was 4½ years old. Because of her autism, Rylie has had to be taught all of the social skills that just come naturally to the rest of us. It has been a very long road for this hard-working young lady, and she continues to receive therapies four days a week after school.
As I mentioned, we recently celebrated her birthday. When we arrived at the restaurant, it was fairly crowded. There was only one large table available outside, and a kind woman named Candice offered for our large party of six to join her and her husband, David. We asked her repeatedly, “Are you sure?” and “Do you know what you’re getting into?” Then we sat down with her.
Rylie made sure that she learned their names, then introduced herself and our entire family to them. Throughout the meal, Rylie, David and Candice had casual conversation about toys, Rylie’s birthday and the activity book she was working on. We all shared food, laughed together and enjoyed the wonderful weather.
When it was time to leave, my family headed to the car while I made sure we hadn’t left anything behind. David and Candice stopped me and told me what a special girl Rylie is. They were moved by her kindness, thoughtfulness and sharp mind and wanted to be sure that I knew Rylie had impacted them in a special way.
As we drove home, I realized that we had just had the perfect birthday celebration for Rylie. Years ago, meals in restaurants were very stressful. They required advanced preparation because of Rylie’s challenges, and we only had a small window of “peaceful” meal time. However, two weeks ago we went out to dinner with a joyful young lady who was sure to greet those around her, held conversations with others and made everyone feel welcome at the table. I marveled at where the past 12 years have brought us, and I hope others who struggle with the challenges of autism can enjoy similar moments of awe and gratitude.
Whether you already know someone with autism or you one day make a new friend who has autism, here are a few things for you to remember:
- Don’t be afraid to ask questions. Just as you would ask any new friend what food they like or what activities they enjoy, ask your friend with autism what their preferences are. It’s also OK to ask questions about behaviors that you might not understand, like humming or rocking.
- Reach out to their caregivers. I am a clinical psychologist, and I had no idea what was happening. Don’t assume they have it all figured out. Ask what they need. Offer practical assistance, like child care or meals. Spend time with them and don’t be afraid of awkward situations. Those moments can lead to laughter and actually make us feel more comfortable with you.
- Avoid assuming that you know what they’re going through. No two situations are alike, and when you think you already understand, you are dismissing this person’s unique situation and missing out on hearing their very important story.
- Invite them to join you. If they say “no,” keep asking. Having autism, and being in a family with autism, can lead to intense loneliness and feeling left out. Offer multiple opportunities for them to be included.
- Allow space when they need it. Sometimes Rylie seeks a moment alone because she feels overloaded by social situations. Imagine that you were dropped in the middle of another country, and you had to decipher others’ behavior, facial expressions and tone of voice to figure out what they were saying and what they meant. That can be exhausting, just like having autism.
- Remember that people with autism think literally. So, be sure to say what you mean and mean what you say. For example, “I might need five minutes to do this” is much clearer than “Give me a minute.”
- Be kind. Nearly two-thirds of children with autism between the ages of 6 and 15 are bullied. Remember that everyone has a story. Smile at the person at school who seems to be having a rough day. Greet that person in the store who seems “different” from you. Hold the door open for that parent whose hands are full with a fussy child. Small gestures can mean the world to someone who is struggling with the challenges of autism.
Local autism resources
- Autism Resource Center of the Pee Dee (All4Autism). These dear friends of mine offer guidance, advocacy and connection to resources as well as support groups and activities for parents and siblings. They sponsor the annual Pacing4Pieces 5K and half-marathon in March. Along with the Kiwanis Club, they offer Camp St. John in July.
- Your school district. They provide screening and assessment as well as programs and therapies for children preschool through grade 12.
- SC Department of Disabilities and Special Needs (DDSN). This agency provides assessment, diagnosis and a variety of services to help individuals with special needs be successful in life.
- BabyNet. This South Carolina program provides essential early intervention services for babies and children up to age 3. Anyone can make a referral to BabyNet.
- SC Early Autism Project and SOS Healthcare. These companies are providers of ABA therapy services and other programs for children with autism. ABA therapy is the only evidence-based treatment for overcoming the difficulties associated with autism.
Farrah Hughes, PhD, is the director of behavioral health services at HopeHealth and the mother of a child with autism. She is a member of the American Psychological Association, Collaborative Family Healthcare Association and the Society for Couple and Family.