My son was diagnosed with autism at age 2.5. Sitting here 12 or so years later we've all learned so much (and continue to learn) about life and compassion and kindness and struggle and celebrating successes.
Our stories are intertwined. His and mine and ours. Mine wouldn't be the same without him. I've said it out loud many times before, I am a better person because he is a part of my life.
As I reflected back on our path I started thinking about the people who have supported our family, and Simon specifically, along the way. The teachers, the personal friends, the internet friends. The ones who simply included and invited and embraced and supported and showed up and accepted and loved without judgement or expectation.
I thought about how, all along, we have been simply doing the best we can with what we are facing at each point along the way. Sometimes we have been awesome at dealing with the challenges and other times there is simply not enough emotional energy left. That's the ebb and the flow of it all - we are all a work in progress.
Here are some suggestions I'd like to share - gentle suggestions if you will - about being a friend to a family living with autism (and because my experience is with my son I'm going to use the word "he" when referring to the child - also, I use both the terms "autistic" and "with autism" interchangeably). As you'll see, I've also included some thoughts from a private message board I participate in for parents of kids with autism:
Include, include, include. And invite, invite, invite. The families may say no every single time but keep inviting and keep including. Give the family the chance to decline because in doing so you make them feel welcome and cared about and included. Don't just assume. It can be very easy to socially isolate your family when your child is different - for a million different reasons (not wanting to talk about/address the disability, not wanting to deal with behaviors publicly, just being super tired from daily living challenges, not wanting to have to see the differences played out in front of you again - sometimes it's simply easiest to stay home for the kid who doesn't like change and chaos). Be gentle and flexible and don't take it personally if they don't/can't respond to your invites. They may simply be in a season that is very hard - meaning that they need your love and support even more.
From K : Being the parent of an autistic child can make you feel isolated. My son has not yet expressed these feelings yet (hes 5) but it pains me to know that he will eventually feel left out of things because of his differences. Teaching your children very young to be kind to people of all abilities is so important. Also friends telling me that they're sorry when I talk about my son. Do I wish things were easier for him, of course, but there's nothing to be sorry about. I have a healthy, beautiful kid that makes me smile and laugh everyday and gives me such a different view of the world. I also know much more about sharks and space satellites than I ever thought possible.
From C : If I cancel last minute...there probably is a reason like school went bad, or he's heavily agitated. It does not reflect on you. Sometimes it's just trying to protect your toddlers from his volatile behaviors. I may still be able to talk or text with you later.
Embrace, embrace, embrace. Open your heart a little wider for both the parent(s) and the child. We are in no way shape or form "sorry" that Simon is our son. He is the best and one of the most awesome people we know and we celebrate all the things that make him, him. Support us with loving kindness. Celebrate him alongside us as part of our larger support team.
Talk to your kids about embracing and including kids who don't follow the norm and then show them by your own example what it means to be a kind human being. Create opportunities for interaction and then talk about about it afterwards.
From J : Acknowledge my child. Say hello, greet him the same way you would anybody else. Ask him how he's doing, even if you think he won't answer. If you are unsure about how to interact with him, ask me, I'll facilitate. This sounds like a no brainer but it happens all the time for us.
Support, support, support. Ask how you can help. Sometimes just having a person to support you at meetings - even if they aren't an expert - is so very welcome. Babysit - get outside your own comfort zone to give your friend(s) a break to go to dinner or run errands or whatever it is they might need. Support us by celebrating all the little + big successes. "Because we never take progress for granted, parents who have kids with special needs are proud of their children's smallest accomplishments." (source) We talk a lot around here about how we are "all on the same team." Be a member of the family's team and let them know you are on their team.
FROM T : If my child is having a meltdown in public, if appropriate, ask if I need help rather than stare in judgment or make unhelpful comments.
Show up. Show up for the kid - meaning, be his friend. Acknowledge him just as you would any other person. Talk to him even if it's uncomfortable at first. Get to know him as a human being. Showing up might mean the awesome opportunity to listen to him talk about time travel for an hour (we absolutely believe that creating boundaries are okay too). Showing up might mean taking him to the movies and buying him popcorn and helping him remember the "no-talking in the theater" rule when he wants to make very sure you are seeing all the things he's seeing (and seriously going to the movies with Simon is the best because his enthusiasm for stories in unsurpassed). Showing up might mean hanging out with him for an evening or an afternoon so the parents can have a date night or a break or go grocery shopping on their own.
Showing up also relates to being a friend to us as parents. Listen if we need to talk. Hug if we need a hug and don't want to talk at all. Sit with us in our moments of frustration and our moments of great pride.
FROM J : Ask. Asking how things are going, what techniques help out little ones feel better, and how they can bring a smile to their faces really goes a long with establishing a relationship with our children, which needs to be there for any sort of relationship to be maintained.
Accept, accept, accept. In our household we accept Simon for who he is at his core - all of him. He is amazing. We are not actively working to change him - we are actively working to make him the best version of himself (just the same as we do with all our kids). We have no idea what the future looks like for him and we live in that limbo every day. Think before you speak and then speak words of loving kindness and acceptance.
Love, love, love. Unconditional love. For the person. For the family. What does this look like? Begin with the assumption that the parents are parenting the best they can with what they have in front of them right now. Love looks like the suggestions I made above about embracing and accepting and supporting and inviting and showing up.
And from my friend Christina who is very eloquent about these issues and is the parent of one of Simon's friends: I would say that it matters the most when someone engages with me about my child with authentic inquiry. Listening and assuming that I am doing my best. Avoid negating the experiences and perspectives parents bring and don't minimalize the diagnosis or symptoms by claiming a quick fix that is based on exerting power on my child. Recognize that your experience as a parent is not mine, nor will it ever be. Don't treat me like a hero or a martyr for advocating for my child, simply listen and ask if I need help. Take time to listen to a script about Sponge Bob, or cars, or some revelation the child has uncovered that seems so ordinary, but is truly extraordinary. Love that child.
Looking for other ways to support and show love? This was a good post: 10 Things You Can Do To Help An Autism Family