Protecting Your Loved One’s Privacy vs Getting the Support You Need
We think one of the hardest parts of autism is that everyone involved needs extra support but it’s often hard to explain the need without disclosing private (and potentially embarrassing) information. Everyone finds parenting and romantic relationships stressful and it’s normal to talk about it with friends, coworkers, or even strangers (many people actually find it easier to talk about their problems with a stranger than with someone they’ll have to see again).
But neurodiversity leads to a different set of relationship and parenting struggles than typical. A few times Robin tried just talking about our current struggles in the same tone as other people were talking about theirs… and got an embarrassing range of awkward and inappropriate responses. And it’s hard to listen to people worrying about whether or not their two year old will potty train before three when you’ve cruised right past any normal training age and are now eligible to have your insurance cover your child’s incontinence supplies.
Where to turn when you need to talk
While Eleanor and Tim like to work through their problems alone, Charlie and Robin are both external processors who benefit greatly from just telling someone all about it. But some of our family’s most challenging struggles are ones that the individuals would never want disclosed to close friends or strangers.
Of course, we have each other. But when the challenges or big feelings are about each other, then who do we turn to? It would be easy if our major struggle was concerning Charlie’s handwriting or our biggest marital frustration was Tim’s passion for football. Those are safe topics to discuss with random parents sitting outside activities or at the playground.
Some parents or partners don’t feel that there needs to be privacy. Or some Aspies don’t need it. There is a spectrum in the need for privacy. We’re somewhere in the middle… after all, Tim and Robin write this website and both kids have approved and subscribe for new articles (you can too at the bottom of each page). Charlie is very open about issues like his OCD and has educated many kids about Tourettes. We have honest conversations about his goals and he’s an active participant in his own therapies and he’s comfortable talking about that with other people in his life. Eleanor is a little more private so you’ll hear less about her. But you will probably never find out the biggest issues we deal with every day.
So how can someone get the support they need?
We can’t pretend to have complete answers. As we said, we find this one of the hardest things to cope with. But these are a few things that have worked for me or for people I know:
- Have a good therapist. Be picky and keep hunting for someone who is willing and able to be what you need. Robin is very good digging inside for solutions on her own so if she has a problem she can’t solve, she really need ideas and advice. She’s had a couple therapists over the years who would never give her any new ideas or advice and only ask her how she felt or what she thought. That drove her crazy. That said, we have friends who are the opposite, who don’t want someone who chimes in their own thoughts, but instead need a mirror to help them see their own. We all also like some therapeutic disclosure. Knowing that our therapists have dealt with something similar in their own lives really helps us. But we’ve had some who were so private that we knew literally nothing about them and it creeped us out. Other people feel just as creeped out by knowing that information about their therapist. Know what you need and look for that.
- Join a private group or message board online. Nothing you post online is truly private so think that through. But we’ve found that old fashioned message boards that allow us to hide our true identity give us the freedom to talk about the real issues without fear of the facts coming back to haunt our family later.
- Have one or two very close friends with whom you can disclose the full story. We found this very difficult to do at first but Robin, in particular, was incredibly isolated without that. She now has 4 levels of friends and it’s been helpful to teach the kids about boundaries this way as well. The inner circle is simply Robin’s two sisters and one of her brothers who know everything about our family and any of us can go to if needed. It helps to have someone we can actually talk to. Our next layer is a few close friends who know some of it about everyone or a lot about just one person and a little about other people. Or who know some big feelings without context. Then there are a large number of friends who are welcome to know everything on this website… which is what literally the entire world is allowed to know. Finally, there are a few people who don’t cope well with personal disclosure and have perhaps been judgmental or rude. They might find this website but we’re hoping not. Those people are thankfully very rare in our life but we’ve heard plenty of horror stories to know that we’re blessed. Consider creating your circles too. You don’t have to tell people which circle they are in, but they will have some idea anyway by how much disclosure you’re providing.
- Keep a journal of some sort. Robin uses the app Daylio (not an affiliate link, she just really likes using it) but she used to keep a paper journal and she still does some journaling in her planner.
- Talk to your religious leader. We have a pastor who knows a lot about what we’re dealing with and it helps so much to know that we’re welcome in spite of our problems. We don’t feel like we’re faking it at church.
- If you believe in God, talk to God.
- Find out if your state has a free phone counseling line. Here in Colorado we have the Colorado Crisis Line. Robin has had a few times when she felt completely overwhelmed by the enormity of her responsibilities and it was such a relief to have someone to talk to.
Besides being a huge help when you need to talk, all these options can be a good model for your family. They all need someone to talk to also and by finding your support, it may encourage them to find what they need also.
Where have you found the support you need?