Life as a stay-at-home mom to three young boys was challenging enough, but in December 2009 my whole world changed: my middle son was diagnosed with autism spectrum disorder. Almost two years later, it changed again when my youngest son was also diagnosed with autism. For our family, it's become a balancing act: we celebrate the joyous successes of all of our children while we work through all of the challenges brought about by their disorder.

Life as a stay-at-home mom to three young boys was challenging enough, but in December 2009 my whole world changed: my middle son was diagnosed with autism spectrum disorder. Almost two years later, it changed again when my youngest son was also diagnosed with autism. For our family, it's become a balancing act: we celebrate the joyous successes of all of our children while we work through all of the challenges brought about by their disorder.

I get asked by many people: “What can we do for you?” We've been open with our family and friends about their diagnoses because we feel it's important that they understand and love our children for who they are and not shy away from them because of their “label." So if you happen to meet a parent of a child with autism, here are a few things you can do to help:

When my son was first diagnosed, I had a million questions. I am lucky enough to have a friend whose child is also on the autism spectrum, so I knew a little about the disorder but not much. The diagnosis came as a bit of a relief for me as a parent - for a while I knew there was something different about my son but I didn't know what it was or how to help him.



Autism Spectrum Disorder is just that - a spectrum. That means that no two kids with the diagnosis are the same, and they certainly aren't all like the autistic people portrayed on TV or in the movies. Some people with autism are non-verbal. Some, like my son, are very verbal. Some are afraid of being touched, others wanted to be touched all the time. My two boys are completely different in how the disorder presents itself.



So ask about autism. Let us tell you what it really means in our house.

Over the past few years, I've worked closely with my sons' teachers and therapists to create a plan and a life that works for them and our family. We set a lot of limits, give lots of warnings about transitions, and give lots of praise and encouragement when things are going well. We have also learned when our kids need breaks, meaning there are times when they are just over stimulated and are on the verge of a meltdown. For my middle son in particular, his senses get overloaded from loud noises, bright lights or too much commotion. To the outside world, it looks like he's having a behavior tantrum. But I know his body and brain is on overload from the assault on his senses.



This means I may need to remove them from playdates before the scheduled end time. Or we may cancel the playdate completely before it starts. I may give several warnings before we leave the playground and pull out my visual timers and picture schedules.



Please understand that we're not being rude if we need to leave. And please don't try to intervene or say “it's okay, he can have the toy/juice/turn on the slide.” We have to follow through with our child in the way that we‘ve learned works best. Your understanding will go a long way in not only helping us, but helping our child as well.

All three of my kids are bright, talented, interesting and incredible young boys. And yes, I'm their mom and I can say that. They are each unique and special in their own ways and are as different as morning, afternoon and night. My two on the autism spectrum, however, have difficulties in expressing their thoughts and ideas. They miss social cues and are quite literal in their interactions with others. My middle son has always been quite verbal, yet he struggles with processing what others have said and has trouble with back-and-forth conversations. My youngest was delayed in his speech but has always been able to understand what was being said around him.



The people who are most successful in communicating with my boys understand this and get on their level. They get down to the ground and stay at eye level with them, even if my boys don't make eye contact with them. They give them the time and space to get their thoughts out, even if it's through picture cards or some other form of communication. They are patient and gentle and take their cues from my kids as opposed to the other way around. My boys respond to this instantly.



A friend told me that with all children we need to remember that behavior is communication. This is especially important for children on the spectrum, especially those who cannot communicate verbally. A hug, a meltdown, a gentle sigh - these are all ways that our children are trying to tell us something. If you are tuned into our kids, you will understand them completely.

When my middle son was first diagnosed, I turned inward. My youngest was 4 months old and I was one exhausted mom. I hadn't slept through the night in years. Because we were just learning about my son's sensory and behavior issues, it was easier to stay home and manage things there than it was to go anywhere. So I said no to playdates, birthday parties, family visits out, family visits in, and offers to watch the kids so my husband and I could go out. I was worried and nervous about how my kids would react and how others would react to them. I said “no” a lot.



The people who know me the best kept asking. They would take no for an answer that time but would ask again. Yes, with some friends the playdate invites dried up. But those who really know my kids and me didn't care what labels were attached to them, and didn't see me only as a special needs mom. They still saw me for me. And slowly, very slowly, we started to say yes to more things. I am cautious and careful about where we go and plan things very carefully. But we have a few people we trust to babysit now so my husband and I can get out alone. We can manage the playground and supermarket all together. I can say yes to birthday parties and other social occasions.



So please, keep inviting our kids to your house. And call us to meet for a drink and offer to watch our kids. I might say no. But then again, I might say yes.

One of the hardest things I've learned as a parent of a child with autism is that so many people don't understand what autism is. There is still an incredible stigma associated with the disorder. People don't know how to act around my children once they find out he has that diagnosis. It was troubling for me to see that because he is the same child he was before he had this label. It's a disorder that everyone has heard of but that few really have a handle on what it means for a child. Or their parents.



So once you get to know me and my boys, help spread the word about autism spectrum disorder. When you're at the playground with another family, and a child is melting down, have some compassion and understanding for the child and the mother or father with them. If the other mother on the bench next to you starts making judgments or disparaging remarks, speak up and tell them that there could be more to the story. Tell them what you know. Yes, this could be a young child behaving badly. Or it could be a young child with autism.



The more we talk about autism as a disorder and not a disease and the more we understand how it can present itself in children and adults, the more understanding, acceptance and compassion we'll all have for children like mine.



There's no better way to help us than that.

Alysia Butler is a stay-at-home mom to three boys from Hopedale, Mass. She writes a personal blog about her joys and challenges of raising three boys at Try Defying Gravity. Alysia is the managing editor for the SPD Blogger Network, a community blog supporting families living with sensory processing disorder. She is also the co-founder of The Oxygen Mask Project, a website dedicated to reminding parents to take a moment for themselves each day.