In my upcoming book, I Wish Someone Had Told Me, a whole chapter is dedicated to how parents of an autistic child experience change, good and bad, in their social landscape. The general premise is that parenting an autistic child can be hard to experience as a parent, therefore can be hard to watch for someone close to the situation. It changes who you spend time with because not everyone can hang with the ups and downs of autism. I address how and why it happens, how uncomfortable it can be, and preparations to make to avoid relationship conflict with your peers.
I will save the real meat of the chapter for those that want to read the book, but I do want to send a message to those of you who know and love someone in our position. The following is an excerpt from the book, and the last part of the chapter. It’s the part that the parent would hand to their friends and family to read. Most of you reading this know someone living with autism in some way. If that person is a close friend or family member, this is for you.
TO THE LOVED ONES
First, thank you for taking the time to read this. This is a pretty big deal for the person who gave you this. The life ahead of them is going to carry a lot of weight, and by reading this book, they are trying to prepare themselves the best they can. The fact that they are showing you this means that you are someone they value tremendously. You’re also someone they consider to be part of their inner circle – someone they expect to be standing by them through thick and thin. The rest of this book is a tool to prepare them, but this portion is included to help prepare those closest to them. So thanks again for being willing to invest the time and energy. They will likely try to explain it, but you may never fully understand how much your support actually means to them.
I want to take a minute to explain a little of what they’re going through, say some things they don’t yet know to say to you about their situation, and offer up some suggestions on how to respond to them. Understand that this road is going to be bumpy and sometimes not very fun. But with enough preparation and help from you, the load will be lighter for all of you.
Your loved one has recently received an autism (or similar) diagnosis for their child. For a minute, let’s say that instead of autism, your friend has just entered a race. Picture going to a track and field event, and you’re there to watch that person run the hurdles. When the starting gun goes off, your loved one starts running. They begin to hurdle, one after another. Everyone is cheering and rooting them on. The stands are full, and everyone is a little nervous and anxious, but the initial feeling is one of hope. As you and the others watch however, the mood slowly begins to change. Your friend is getting tired along with the others in the race, and now things are a little unsettling. You see, this race is different. There is no finish line – just more and more hurdles. Eventually, it becomes difficult to watch. The racers grow weary and start tripping over the hurdles, but the race won’t end – it’s just a complete loop of hurdles with no finish line. You glance over at the bright green exit sign. You’re not sure if you can continue to watch. You see a few people leave in a look of despair. You look down at your feet, then back at the exit sign. You can’t bear to leave, but it’s getting harder to watch. Your loved one is still out there exhausted, sweaty, teary, and maybe bloody. They are still running and hurdling the best they can. They want to quit and go home, but they know that giving up is not an option. They appear as if they might collapse. You can’t take any more, and it’s time to make a choice. Will you head for the exit, or will you head out onto the track, throw their arm over your shoulder, and support them while you run the race with them?
I don’t make that comparison to scare you. It’s just an honest representation of the life a few of us live. Throughout this life, we need a ton of support. We are going to be hyper sensitive, super fragile, and generally banged up much of the time. We won’t always be very easy to be around. But we need you. Plain and simple. We need you.
After 12 years with an autistic child, I’ve developed some helpful things that will guide you through the coming years of maintaining a strong relationship with your loved one. These are the things I wish I would have known to say to my loved ones early on. My hope is that you receive these words well, and over the years, continue to roll up your sleeves and do the work alongside those you love. It won’t always be difficult. There will be times of great laughter, amazement, and joy along with the challenges. The one thing I can guarantee is that it will be a fascinating experience.
First, ask questions – and I don’t mean “have you thought of…”, or “have you tried…” type questions. Those are actually really toxic. Ask questions about them, not necessarily about their child. Ask them how they are doing. Ask them to explain their process and their feelings. Ask them what they’ve learned so far, and what they are curious about moving forward. Ask them if there is any way you can help with any aspect of what they are going through.
Listen, listen, listen. Maintain eye contact. Once they start talking, don’t respond right away. Just keep listening. Most of the time, they don’t need any input. They just need someone that will genuinely listen. Don’t speak again until you are prompted. They will likely go on for a long time. That’s OK. Keep listening.
When it’s time to talk, do so first with your actions. Stand close to them. Maintain eye contact. Hug them, and stay close. Your actions will definitely speak louder than words in this case. Parenting through autism can be one of the loneliest feelings imaginable. Sometimes no words are needed. They just need to know that someone is there, ready to prop them back up when they tip over. And when it’s time to speak, the first thing you need to make them understand is that you have no idea what it’s like to walk in their shoes, that you probably won’t be able to offer up any suggestions, that you don’t care to “fix” anything for them, but that you’re there to simply stand by them.
Gain an understanding of as much as you can about their new life. You can do this without even talking to them. Do your own research. Watch their child. Watch them. Again, don’t offer up fix-it type suggestions. Just walk alongside them for a better understanding of what they’re going through. The more you know early on, the better you will be at responding when the time comes.
Be prepared for the ugly. Understand that they are going to blow it as parents and they are going to blow it as a friend. Don’t turn your back on them. Remember, this thing might be harder than anything you can imagine. You may have to take your lumps. Don’t take it personal. When it gets really rough, it just means they need you all the more.
Consider that what they are up against is going to be part of them their entire life. Are you prepared to go the distance with them? If you’re not, don’t just walk away. Go to them and be as transparent as possible. Tell them how you are feeling. It will be much easier to handle relational issues sooner than later. My hope, though, is that since you are reading this, you’re you’re already ready and willing to stand by them. And if you are, kudos to you.
Lastly, you need to understand that there is a high likelihood that your friend’s social landscape is changing. Autism requires more family attention, so they may not have the same time to dedicate to adult, social events. You might have to cut them a little slack when it comes to guys/ladies night out. But more importantly, don’t forget about them because they can’t join the fun. Make it a point to have some one-on-one time or take the group to them if need be. It’s a real drag when we feel left out, and it has a tendency to compound our already tough circumstances.
Along the same lines, there are people close to them that might not be able to handle their new, high-octane adventure. Those people might distance themselves from the relationship. If this is happening, your friend will likely be pretty upset. It’s a hard pill to swallow, especially when your friend thought that those people had their back. Be aware of this and communicate frequently with your loved one on how their social environment is doing.
Well, there it is. Whoever it is in your life that is embarking on this new autism journey, take special care of them. They are going to need super-awesome people in their life to help them out. And again, thank you for taking the time to invest in this life with them. As someone who has experienced the ups and downs of the social changes due to autism, I can’t understate how important you are.
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