Unless you know someone with autism, it’s difficult to accurately explain what life is like behind closed doors. The mom I want to highlight is Kim Stagliano, because she has three daughters with autism. If God only gives you what you can handle, then this woman is a gladiator. Please read our interview so the next time you see a tantrum by an autistic child in the grocery store, hopefully your frustration will turn to compassion.
JENNY: Tell me about your girls.
KIM: My oldest daughter, Mia, is 18. She is the most affected by her autism. She is a gorgeous, petite girl with blue eyes and a great smile. She can speak but usually only uses one or two words at a time when she needs something. You have to interact with her (a polite way of saying “get right in her face”) in order to get her to say “Hello” or “Goodbye.” She is affectionate and unlike the autism stereotype, she likes being around family and classmates. Mia was a typically developing infant. She met her physical milestones on time and could recite the alphabet and count to twenty before age 2. She regressed into autism, becoming more remote and the main red flag that we saw was that her large vocabulary did not turn into usable communication. She attends the local public high school in a self-contained classroom.
Gianna is the classic middle child: She has a good sense of humor and is a ball of energy. Gianna is always looking out for her sisters; she is kind and caring. She is 16 years old in 10th grade in a combination of the autism classroom and the general special ed classroom. Three years ago our town added a separate autism class because the teaching and behavioral requirements are so different from traditional special ed, which includes intellectual disability, physical challenges and Down syndrome. To our delight, she is also enrolled in mainstream biology with support. She uses sentences and will answer a question with a word or two if you give her plenty of time to process the question.
Bella breaks all the molds. Her diagnosis is autism, and she is what I call “preverbal.” Her autism looks very different from her sisters. She was physically behind her infant peers and did not walk until she was 2 years old. Her coordination and gross motor skills almost look like a mild cerebral palsy. She can say two or three words, but understands everything she hears. She uses an assistive technology device that allows her to communicate simple needs. She is 12 years old and a tall, slender girl who is affectionate and always trying to find ways to interact with those around her.
JENNY: What don’t people know about autism that they should know?
KIM: Without sounding like a Debbie Downer, autism is a monumental stress on the entire family. Media portrayals are often “rah rah” or focus on the just the feel-good stories. And there are plenty of opportunities for joy when you have a child on the spectrum. But the day-to-day reality is that it is extremely hard word to accomplish even an average task like grocery shopping or going out for a bite to eat when you have to facilitate, direct and “rethink” basic routines so that they respect and meet the needs of the child. Families need more support and understanding from the general public. And people with autism deserve better programs in school, medical care and beyond to help them function at their best levels.