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
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47 comments
Thank you for sharing this. One thing that really helped me understand is when you said (someone's comment from the message board you mentioned) if appropriate please ask if you can help, with a public situation. I am one to shy away from that, not because I am judging but because I don't want to interfere, or bother, or potentially not know if it's an appropriate situation. I'll follow the link to read up on the suggestions further. Thank you for sharing your experience, and your amazing son with us. I don't have an Instagram, but I look at yours, and I root for you and for him and all his people, everyday. Michelle t
Replies to mtercha
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Great post. The more it is talked about the more 'disabilities' such as this just become another version of normal and for those of us not directly experiencing this situation it becomes an easier way to relate to your situation and to those like Simon.
Replies to minkaclark
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Thanks for posting this. We had friends with an autistic child and if I had only had this post. Not enough information is given to those around the person. Thanks, Ali.
Replies to Radish38
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All of this. Wow. Said beautifully. (Maybe someday you can make a stamp set for special needs families with these types of words. (Embrace, support, accept, etc.)
Replies to stephd
Beautiful idea! I'd buy that for myself and all my mommy friends
I would to...
oh yes please.
Yes, yes, yes!
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Thank you so much Ali for these words. I have experienced both the "do's" and the "don'ts" of each of your suggestions many times with my child who has AS. Needless to say the hurt cuts deeply and the joy from the gift of acceptance is so appreciated that it elevates our hearts and keeps our hope alive.
Replies to ScrappinMyHeartOut
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Thank you so much for this post. Sometimes when I don't know what to do in a certain situation, I do nothing rather than make things worse. When in doubt, it's good to know how to help and what to do to accomplish it. I've loved watching Simon and Anna grow up through your posts. It's been an amazing journey!
Replies to hgauvin
Yes, you explained what I meant better. Thanks
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Beautiful, Ali. I know this took something from you to write. Thank you. <3
Replies to larkindesign
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These suggestions sound like good for many applications. We'd all be kinder more respectful people if we can implement them in our day to day dealings with people. Even more so when we have a special needs family in need of a little extra love.
Replies to Lize
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Sitting here reading this, I so wish I could have made a thousand copies of this and handed them out to family, friends, and strangers when needed these past sixteen years. Especially to the ones that made, lets say...interesting comments that were especially unhelpful. Our oldest has Asperger's and all of these thoughts and suggestions are so spot on Ali! I especially loved when you said, "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)." This just resonates with me. We have always told our son Elliot that we just want him to be "the best Elliot he can be." I overheard a conversation last week between our daughter and her friend, both are thirteen. They did not know I heard this verbal exchange. The friend said, "Don't you wish your brother was more normal and didn't have Autism?" I was shocked at that question, but pleasantly surprised at Isabelle's response. She said, "If life could be easier for Elliot I would really like that, but not if it meant he had to change. He is my brother, and I love him for who he is right now and who he will be ten years from now." Very proud momma moment for me.
Simon is so blessed to have a family that loves him for who he is right now, who he will be, and for advocating for him. I have loved watching him grow up via social media the past ten+ years and Ali you have done such an amazing job with him. He is a terrific kid!
Replies to supertoni
I love your suggestion about making many copies and handing them out! I am working on a way to spread the word. People don't mean to be indifferent as Ali says. It's often they just don't know what to do. We need to spread the word!!
Like a nicely worded business card for idiots, LOL. I love that idea.
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This is a wonderful post. Their is such a lack of knowledge and information. No one wants to be invasive, but in reality most people are very willing to help. Thank you, thank you, thank you for sharing this wonderful post!
Replies to charris
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This is beautiful. Now, more than ever, we need acceptance, kindness and compassion toward one another. Like tons of it. Thank you for being so generous with your heart.
Replies to TORRSMOM
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So much truth and helpfulness in this post, thank you. As a single parent with two Asperger's kids (and no father, so it's just me), I would add that this applies double for a single parent working to figure this out and raise these kids as best she can on her own. Please please PLEASE offer to take one or both of them on an outing, even a short one, and give her a hour of just silence or time to read quietly or run an errand on her own or whatever it is. Ask what the child might like (playing a board game or video game, going to a park, visiting a favorite store for an hour - whatever it is) and then TAKE HIM. Even just once. Your kindness will be appreciated more than you can ever know. It's a very long, hard, overwhelming road as a single parent with neurotypical kids, and with those who have extra challenges, it's even more so. I know we wouldn't trade them for any other children, and love them to the moon and back. But that doesn't make it easy! XXOO
Replies to staciasnapp
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My daughter has Down Syndrome and all of what you said rang true for me and my family. I get a lot of people that take one look at her and assume what she is capable of without giving her a chance to show them. She usually blows their assumptions out of the water. I am always grateful for any invites that we receive. Love this post! Thanks for sharing!
Replies to Blupixy79
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thank you thank you thank you , on a daily basis I forget how important for me is not to loose my cool or get upset about little things ,since I have to remind myself every day to find another way to engage.
Replies to zuzia620
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What a read--full of love. That is what I read, an article full of love--for others and for self. And as I now am old in years, I feel that all you suggest is just (or should be) natural behaviours or naturally taught behaviours ... In other words, it shouldn't have to be laid out. It should just be. That makes me sad. But what is great is that kids with autism are now able to openly be who they are and the opportunity to create support and acceptance is huge. And with parents like you, talking about what helps is so enlightening. Beautiful article, Ali. Thank you. And congratulations to Simon for all his high school successes!
Replies to Laurie_Anne
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Ali-I love this post. I have worked with kiddos with Autism in a school setting and I have such a heart for them. Each of their journeys is unique. The children I worked with were non-verbal for the most part, but that doesn't mean I didn't talk to them the same way I would talk to you. I will never know how much or how little of what I gave was received, but it doesn't matter. What matters is the love. The spectrum is wide but the heart is always intact. All my love to you and your sweet family. Go Simon, GO!!!!! --Larissa West @_txlnstr_
Replies to Lswest
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Thanks Ali I started reading your blog and I didn't even have kids, today my son is 7 and a Wonderful happy non verbal individual, but sometimes the judgement and lack of acceptance of who he is makes me tired. But you like me try to spread acceptance and support for our children and I appreciate.
Ps that brush on his picture do you have it available?
Replies to Jana_NJ
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I just needed to (wanted to too, but truly needed to) say thank you for writing this post. Sometimes the isolation feels so overwhelming...and the thing is that I know people don't mean to shut my son/my family/me out, it's just that they don't know what to say and do. You've inspired me, a total stranger, for better than a decade, in so many ways. But I don't think you've ever made the tears of gratitude flow quite like this. So yes, THANK YOU.
Replies to dastevens
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Thank you for this post. For celebrating Simon. The boy I can see growing up, from the side lines, here on the blog, and who seems to me to be such an awesome boy. The love you have for him. And that shows in this post.
Thank you for the suggestions in this post. For making me want to try even harder to do
those things. The "offer help in public situations thing" might still be a challenge though; I don't want to interfere or do the wrong thing... It's not judgment preventing me to help, it's either not knowing if help will be appreciated, or not knowing what help to offer. But... I'll try.
The thing that hit me when reading this post, was that most of the above also is true for my eldest daughter. She is Gifted. Which also makes her very different from most people around her.
Judgement, comments, people deliberately trying to avoid being around her, thinking she is weird, thinking I raise her the wrong way. A child that always acts differently than people expect, that feels so deeply. It makes me sad to see how people react. To her. To me.
As a mom, I'm proud of her. Such a beautiful, deep soul. Such a great sense of humor. And the amazing talent she has.
I recognize what you all say: I'm not trying to change who she is, I would never want that. I'm just trying to help her be the best version of her.
With english not being my native language I'm not that good at expressing myself very well. Sorry for that.
Replies to Esk74
This was beautiful. You expressed yourself just fine. You sound like a wonderful person.
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