I was doing my best to get out the door when the doorbell rang. Already running late, I wasn’t expecting anyone and as I peeked out the kitchen window, I was surprised to see our neighbor from across the street. Her oldest son is a constant playmate to our four boys, but she has rarely appeared on our doorstep. I hurried to open the door, and when I did, she already had a kind and sympathetic smile plastered on her face. My stomach tightened and I returned her smile with a questioning smile of my own.
Haltingly, she laid it on me; there’d been an incident the night before. Actually, by the time she was done explaining to me exactly what had happened between her son and mine as they ran up and down our street at dusk, she’d listed out several little incidents that made me wish I hadn’t opened the door at all. She was kind, she was understanding, she said all the right things, and I was properly embarrassed, humbled, a little defensive, but mostly, just devastated. The hard realities of our son’s struggles often pop up without notice, and my heart can hardly stand it when they do.
This mild confrontation is not the first and won’t be the last one I’ll ever face on behalf of our son, and next time the other parent might not be so compassionate. They might not try so hard to meet me halfway. They might not want – or try – to understand his world at all.
Five years ago, when he was the most darling, round-faced four-year-old you’ve ever seen, our boy was diagnosed with autism. Because of his particular place on the spectrum, most people were surprised when I’d voiced my concerns about his development. He wasn’t Rain Man, after all. And while he wasn’t saying a lot of actual words or phrases, the little jabbering language he’d developed (Squirrel Speak, we called it) was too cute. How could it be a cause for concern?
As he grew, his quirks continued to multiply, and I often sensed that he was almost always on the edge of panic. To most people not living in our home, he was just unique and a little headstrong, silly and a late bloomer. They marveled over his ability to memorize, if not the actual words, the tones and cadences of an entire movie’s worth of dialogue. At fifteen months, he could recognize all his letters, a skill we never taught him.
On occasion, when our more difficult moments were put on display, tantrums or meltdowns brought unsought parenting advice down on our heads. As he grew, this happened more and more often. So many nights I wondered why on earth we couldn’t get this parenting thing right.
Eventually, the list of questions became too long and we could no longer chalk it up to inexperience or our child’s unique personality. Something was different inside him; something was going on with our little boy and we needed to find out what it was. Two very long years later, a stack of papers listing diagnostic criteria, enumerating results, and finally stating a diagnosis arrived in our mailbox. That something we’d sensed had a name. Autism.
Since those early days, we’ve navigated this world holding tightly to a roadmap we never could have imagined. I could list the doctors and therapies and interventions we’ve accessed. I could detail the more grisly details of all the challenges our son has faced, the times he’s been sneered at, teased, baited, judged, and left out. I could describe the incredible people who have come alongside him and us, the therapists who end up feeling like family, the teachers who have worked hard to understand and accommodate his needs, who have seen his unique gifts and unlimited potential, the family members who have spelled us or given all of our sons the ready smile and unconditional love they deserve.
But if you’re reading this, I suspect that what you really want is to know what you can do, how you can help and not hurt, how you can talk to your kids about special needs, what a conversation with our son should look like, how you can strike a balance between supporting our family and our son while still protecting your own children and teaching them to self-advocate.
And so, here is my list. Another special needs parent might not have the same list, but hopefully this is a starting place for you.
1. Educate yourself- I spend a lot of time learning about autism, learning about our son, and passing that information on to those with immediate and constant access to our son- his teachers, his grandparents, etc. It is a sign of true compassion when you take the initiative to hop on the internet and look for information, learn the basic challenges and definitions. If I had the time to teach Autism 101 to every person we encounter, I would.
2. Ask for Specifics- They say if you’ve met one child with autism, you’ve met one child with autism. Our son’s gifts are unique, and so are his challenges. If you ask me before your child’s birthday party what you need to know before our son attends the event or how you can provide a comfortable environment for him, I will happily and gratefully provide you with that information. And I will never forget your kindness. You automatically become safe for our family.
3. Talk to Your Kids- Depending on the age of your child, you might be surprised at how understanding and open-minded your child is. Autism is not a big, bad secret and keeping our son’s diagnosis from your child doesn’t protect either of them. Our son knows how proud of him we are, and that includes his autism. He also knows that not everyone understands that his neurology is different than most of the population, and he strives to be patient and a good teacher to those who are kindly curious. Giving your children a foundation of inclusion and an education on the beauty of difference and equality is a gift not just to us, but to your child and ultimately, to society.
4. Give our Son Grace- The truth is, social interaction is hard for our boy. So is impulse control. Trust me when I say, we’re all working hard on it, and our son is working hardest of all. If you are witness to an incident that you “would never allow” in your own home, try to remember that though you may not see it, tremendous time and energy is going into our son positively interacting in social settings of all kinds. We have all had to learn these lessons, his process is just more demanding than yours or mine was. Our son is processing to a degree none of us can imagine.
5. Don’t Be Afraid to Knock on Our Door- I know it can be awkward. But I promise that I would rather know if a problem arises. We cannot address these difficulties unless we know about them. Tell me. I will be embarrassed, and I will certainly ask my son for his side of the story. But in the end, I will be thankful that you took the time to kindly address any problems instead of taking an easier and less effective approach, like keeping your kids away from mine. Friendship can be hard work even when all the kids are neurotypical. But for all of us, it’s worth the effort.
6. Listen and Let Us Know that You Love Our Kid- As we get to know each other, there’s a chance that I will open up to you and share things that will make you uneasy about our life. When you can listen and find a way to affirm and reaffirm that you adore my son, it’s one less place I have to be constantly vigilant and protective. It’s easy to get bogged down in the hardships of helping our boy navigate this world. Sometimes I just really need to know that you see the brilliant light that is our son.
7. Teach Your Children to Say No and Ask For Help- This is a lesson we’ve had to impart in our own home. It’s really a lesson all kids need to learn, but when interacting with an autistic child who struggles to read social cues, it can be especially important. If your child encounters a situation with our child that makes him or her feel uncomfortable, the best thing they can do is to tell our child “no” and then find an adult to redirect our child and diffuse the situation. All children deserve to have their boundaries respected and I will always support a child who needs help enforcing theirs.
Society isn’t set up for kids like mine. His particular neurology means that he will have to work ten times harder than the rest of us just to live here. We are so grateful for anyone who steps into our lives and wants to help make his sphere a little friendlier, a little more appreciative of all he has to offer. We want him to grow up proud of himself, proud of his autism, proud to be part of a group of people who bring so much to our world. Thanks for helping us to do just that.