It’s a common occurrence for caregivers in the autism world to be lonely. As in, there is no one else in the world that cares for you lonely. While I don’t condone suicide in any way, I can certainly empathize with how they feel in the moment. The you can’t see because of the darkness that envelopes you lonely. Loneliness that leads to mounting depression. Let me be clear here. I’m not suicidal in any way, shape, or form. I am blessed with an amazing family that I absolutely adore to the ends of the earth. What I am is overwhelmingly lonely. I long for friends who call for no reason. Who haven’t seen or heard from me for a few days so they check up on me. Oh, I haven’t seen or heard from Penny in days. I’ll grab Starbucks and surprise her. Those kind of friends. People who generally want to be around me on a regular basis regardless of whether it is an autism rising day or just a harried homeschool day. They simply enjoy my company so much that those things are easily overlooked or not a problem for them.
It’s not anyone’s fault really. There is no hard and fast answer to how this occurred. Most friendships occur in the early years of people’s adult lives. You get married and have kids . You still have the non kid friends but they start to wane as you get completely wrapped up in being a parent. You find other friends who have kids. You start hanging out with them as the children play. Then autism happens. Friends think your child is too much so they don’t want to hang with you. They don’t know what to say about your struggles so they don’t call at all. Your time becomes consumed with therapy appts. You can’t go to certain places because your child can’t handle it with his sensory issues. All your money is being spent on therapies, diapers, weighted blankets, etc. You can’t afford to go out because all your money is being sucked out of your bank quicker than you can make it. You are beyond exhausted because there is no respite from autism. You can’t leave your child alone for his own safety. He is literally with you 24/7 even at therapy appointments. You attend those as well to make sure he’s safe while watching what they’re doing in order to replicate it at home. When he wakes up every hour of the night screaming or refuses to sleep more than an hour, you are right there with him. You become a walking zombie. What few friends that managed to stick around through the early autism years have all but disappeared by now.
You find yourself on Facebook with 500+ “friends” but no one who understands you. In a world of social media where we know what other people eat for every meal, it’s ironic that we crave human interaction. That intense waves of loneliness wash over you. You find yourself second guessing your own sanity. What’s wrong with you? You have 500 + “friends” on Facebook. You’re on the board of your local homeschool group. You attend church and Sunday School regularly. Yet, you feel friendless. You hang back and drop out of sight for weeks at a time trying your best to not drown in this new sea of loneliness only to become more depressed and lonely as no one calls to check on you. No one calls unless they need something from you , of course. No text to simply say I miss you but one that says are you doing children’s church this morning with no mention that you haven’t been seen in weeks. If you’re going to send a text like that then don’t send one at all in my opinion. Nothing makes a person feel worse than thinking you thought of them only to discover seconds later that it was only because you wanted something from them.
Here’s the kicker, if you know an autism mom then please reach out to her. She may turn you down repeatedly. Her hands are full. Her life is chaotic. Keep reaching. Better yet, autism or not, if someone comes to mind then send them a note to say hey I thought of you today. A text, an email or snail mail. It doesn’t matter. What matters is that you did it. Haven’t seen someone in a few weeks? Bring a meal to their house. Stop by with a drink you know she likes. Show up and offer to do her laundry. Help her mop her kitchen. Bring drinks and a snack and insist she sit and chat with you for a few minutes. Call her up for no reason. Can you imagine how much better our world would be if every one of us did this for just one person? WOW! You don’t need to do it for everyone everyday. However, it would take less than 5 minutes a day to call or text someone. 5 minutes to make someone smile.
I’ll come through this as I always do. The hard part is knowing that next time , it will be worse. Remembering that you got through it before doesn’t help. What you remember is that you still have no close friends. You still sit at home alone. Trapped in the darkness. Exhausted beyond belief longing for a girl friend to walk beside you . A flesh and blood person that you can hear, see and call at stupid hours of the night. Who texts you funny things just because they know you will laugh until you snort. Each time it happens you sink deeper into the black hole of loneliness and depression. Eventually, you will see no way out. That’s when suicide becomes the only option. I can completely sympathize with how people get to that point.
Update:
When I wrote this many years ago, I was crying out for help. Help never came. Finally, in the summer of 2016, my husband sent me to help my far away, military friend move across the country. I spent 6 weeks packing, moving, painting, driving and laughing with her, Madison, and her children. It was glorious. It was also cathartic. I could be happy. I had a friend who adored me. Who adored my family. My husband and kids adored her. So I did what any person descending into darkness would do. I sold most of my possessions and convinced my family to move across the country to live by her. My husband and children agreed because they recognized my desperation & desired to see me happy. Desperate times sometimes call for desperate measures. It would turn out to be the best albeit hardest decison of my life.
This is a hard situation. Although, my house isn’t always in the condition where I want people to pop in unannounced. LOL I went through this when I first moved here and it got better when I found a good church fit and when a homeschool community sprung up around me. Praying for you friend!!!!
Personally I think this is not so much an autism problem but a problem of the church not being relational. I have a similar story without an autistic child until we found a church where people really do community.
Amen!