If you’ve been following this page for a while, you may have noticed that neither Caley nor I have posted in over a month. On my side of things, that’s been for good reasons – I’ve been incredibly busy doing what I love, working with children with special needs and taking classes. That’s left me with little time for writing these posts, but I’m sure you all will understand.
Unfortunately, on Caley’s side of things, not posting has been for not so good reasons. She’s been highly overwhelmed and anxious and really low on energy/”spoons”. (If you’re not familiar with the spoon metaphor, you should read up on it, it’s really helpful for understanding autistic people’s needs, and those of others with disabilities. http://www.butyoudontlooksick.com/…/writt…/the-spoon-theory/) Since it’s my spring break right now, I came down for the week to help her out. Caley does have other people close by who care about her and are more than willing to help her, but sometimes when things get really bad, you have to act a certain way to be able to help Caley and not everyone knows how to do that.
I’m one of the people who knows how to help her. The reason I know where the trigger areas are and what she needs because I’ve been in a very similar place myself just last semester with anxiety and depression. I can look at a bag in Caley’s room and say, oh, you probably want that gone because you have bad memories of getting it. Or listen to what someone else is saying and know when the topic needs to be changed because it’s too stressful for Caley, because I’ve been in a place where that’s been too anxiety inducing for me, too. All of these abilities, plus our love for each other, make it so I can be a soothing presence for Caley and know how best to help her.
This is one of those areas where love alone is not enough to provide all the help someone needs – you need to be able to act a certain way and know certain things in order to be able to help. I have that knowledge, so I can. Caley can’t always be around other people that she loves and who love her, though, because since they don’t know how to act and what she needs, they take more “spoons” to be around. It’s not personal: it has nothing to do with love, and everything to do with knowledge.
I know for certain that Caley is not the only one who needs these things out of her allies. I know this because when I’ve gone through tough times, I’ve needed them myself. And it seems to me that this is good advice for interacting with other people when they are dealing with a lot of anxiety, too – which, given than anxiety disorders are HIGHLY common in people on the spectrum, means it’s probably useful information for all of you readers. So here I’m going to share some of the tips from personal experience that make it so I can be in a position to help Caley – and hopefully will help you help the people struggling in your own life. This list was made with an adult in mind, but most of it applies to children as well.
1. Show no judgment.
This is really important. If Caley (or I) feel judged, we’re not going to feel safe sharing our needs with you. If you’re the type of person who judges people who have messy rooms, and you came to visit Caley or me when we were struggling, guess what room you won’t be allowed in? Our messy bedrooms, even if we need help cleaning them. Even good-natured teasing should be avoided for fear of giving this impression. And DEFINITELY avoid any use of the word lazy. Difficulties with self-care and completing seemingly simple tasks have nothing to do with laziness, and everything to do with how very, VERY hard anxiety/depression can make completing such tasks. If you want to learn more about this, read my post “On the Effort Required to Make a Phone Call and Climb a Mountain.” http://www.autismspectrumexplained.com/…/on-anxiety-and-the…
(Spoiler alert: when struggling with anxiety I would have said the mountain was infinitely easier.)
2. Reduce the barriers to self-care.
When you’re dealing with anxiety and depression, doing the simple things needed to take care of yourself can become really, really hard. Even getting up and microwaving a frozen meal can be too hard sometimes. That’s why one of the first things I did when I came to visit Caley was buying her loads of easy-access meals. There are varying degrees of easy, and I got her all of them. Yes, I got her microwavable meals, for when she’s feeling like she has more energy/”spoons”. But I also got her a LOT of meal replacement drinks/bars. So when she feels like she doesn’t have the energy to get up and get food, instead of skipping a meal altogether, all she has to do is roll over and grab a drink.
3. Do what’s helpful for them, not what would be helpful for you.
My gut instinct when I saw all of Caley’s clothes on the floor (as mine have been in the past) was to fold them and put them in drawers. That instinct, however, was utterly wrong for Caley’s needs. Sure, the clothes would look nice, but it takes a LOT of energy to fold clothes, much less put them in drawers. Within days after my leaving, that system would have deteriorated and the clothes would be in a pile on the floor again. Instead, I gathered bins and just put them on the floor near Caley’s bed. Into one bin I sorted the dresses, another the pants, and another the shirts. Now instead of having to attempt to fold the clothes and open up drawers and put them inside, all Caley has to do is instead of throwing them into a random spot on the floor, throw them onto a specific spot on the floor.
This system, too, will deteriorate eventually, because even throwing things into the right spot on the floor takes too much energy some times, but it should last her much longer and make things easier for her to find in the meanwhile. It’s a system designed to make things as simple as possible for Caley, but in order to create the system, I had to see things from her perspective, not my own.
4. Avoid anything that involves conflict and be a calm presence.
When I was having my greatest struggles with anxiety, I couldn’t watch my favorite television shows anymore. What’s more, I couldn’t watch television at all. Even an episode of My Little Pony, quite possibly the least stressful show in existence, had too much conflict for me to handle. I would watch the intro, fast forward through the conflict, and watch the resolution…and even THAT was too much. I say this to give you an idea of how very conflict sensitive anxiety can make someone. So when I’m with Caley, I don’t argue with others. I don’t push her to go to the movies with me (or push her to do anything, for that matter) or talk about world news (which is generally stressful). I don’t tell stories about anything that involves even the slightest conflict, even stories that have happy endings, or even comment on being worried that we’ll be late somewhere. I try to be a very calm presence for her and only express positive emotions to the best extent that I can. This also helps in making me a predictable emotional presence, which as you might imagine is also important.
5. Be extra-sensitive of autism-related needs.
Caley normally does a pretty good job of functioning despite schedule changes or sensory issues. They’re hard on her, sometimes too hard and she has to leave, but generally she can handle them without showing how much they impact her. Not so when she’s dealing with anxiety/depression. If I say we’re going to eat at Olive Garden, even if we pass a nicer restaurant on the way, we need to go eat at Olive Garden. Of couse, we’re probably not going to be eating at an Olive Garden when Caley’s dealing with a lot of anxiety, because she’s more sensitive to sensory issues than usual and even with her earplugs it would be too much. Instead, this past week we’ve eaten at sushi restaurants…places with low lighting and most importantly, quiet.
6. Give them time and space alone when they need it.
Despite the fact that I’m the best ally Caley has right now, and I try REALLY hard to be a low stress presence, sometimes even interacting with me is too much. When that’s the case, I know it’s nothing personal and I give Caley her time to read fanfiction, or listen to Mindcrack videos (her special interest), until she tells me she’s able to interact with me again.
7. Reinforce their competence.
I am one of Caley’s biggest cheerleaders. So when she writes a paragraph for her homework assignment, or takes a load of laundry out of the dryer, or does anything that is hard for her, I will cheer her on and acknowledge how much effort that took. And even when she can’t do something, I will remind that I believe in her, even if things are too hard to do right now. Of course, different people need to hear different things when they’re going through tough times, but these are the things that help Caley.
8. Don’t push issues: no means no.
When Caley is struggling, advocating for herself and stating what she wants gets really, really hard. It’s already hard, as she’s written about in her post about visiting the dentist (http://www.autismspectrumexplained.com/…/self-advocacy-is-o…), so you can only imagine how much more difficult anxiety makes it. That’s why, when Caley says no, or even if she doesn’t answer a question (which is her way of saying no when it’s too hard to say), I don’t push the issue. I don’t try to convince her, or even repeat the question. Because she will say yes, if only as a means of ending conflict, even if that’s not what she truly wants. To push her in this state is to take her choice away from her, and that’s not only not okay, but that really hurts her. So when Caley says no, I trust her judgment and don’t press any more.
9. Help them get help.
This is one of the most important things on this list. Caley and I have talked about how very ironic it is that when you most need help is when it’s the most difficult to get help. When you’re struggling with anxiety/depression at the level Caley is (and I was), picking up the phone to call and make an appointment with a psychologist is the equivalent of climbing Mount Everest. It’s really, REALLY hard. So one of the things I’m doing for Caley today is calling her psychiatrist to schedule an earlier appointment for Caley, since she can’t call herself right now. Medication and counseling are two of the greatest weapons against anxiety, as I myself am evidence of, and though I can help Caley in the short term, in the long term she needs those to help her.
10. Don’t be afraid to admit you need help yourself.
Last semester, when I was having some of my greatest struggles with anxiety and depression, Caley was also struggling and needed help. I tried to provide it, truly I did, but when you’re struggling yourself you’re not in a good position to provide help for others. It’s like what they say on the airlines; you need to put your own oxygen mask on before you attempt to help someone else with theirs. Not being able to give Caley the help she needed was part of what motivated me to get help for myself. And it’s worked, as the help I’ve provided Caley with this week shows.
In the meanwhile, though, I needed more help to help Caley. So I reached out to our parents, people who love and care for Caley every bit as much as I do. And they stepped up to fill in the gap. My dad hired a tutor for Caley to come by and help her with pretty much anything she needed help with once a week. She takes Caley to doctor’s appointments, helps her complete her assignments, and provides emotional support for Caley as she completes these anxiety-inducing tasks. And my mom comes by and takes Caley shopping for groceries on the weekends. (They do a lot more than just these things, but those are just some examples.) Our parents’ efforts have helped Caley preserve her independence, while reducing the load on me.
That’s it – that’s all the principles I use to help me help Caley. I hope that they help you to help those in your own life…and to know when to get help yourself.
Like = Sending you hugs, Caley.
- Creigh
[Picture reads: "How to Help. 1. Don't judge. 2. Reduce the barriers to self-care. 3. Do what helps them, not you. 4. Avoid conflict in all contexts. 5. Be sensitive to autism-related needs. 6. Provide time alone when needed. 7. Reinforce their competence. 8. Don't push issues; no means no. 9. Help them get help. 10. Admit when you're over your head.]
Unfortunately, on Caley’s side of things, not posting has been for not so good reasons. She’s been highly overwhelmed and anxious and really low on energy/”spoons”. (If you’re not familiar with the spoon metaphor, you should read up on it, it’s really helpful for understanding autistic people’s needs, and those of others with disabilities. http://www.butyoudontlooksick.com/…/writt…/the-spoon-theory/) Since it’s my spring break right now, I came down for the week to help her out. Caley does have other people close by who care about her and are more than willing to help her, but sometimes when things get really bad, you have to act a certain way to be able to help Caley and not everyone knows how to do that.
I’m one of the people who knows how to help her. The reason I know where the trigger areas are and what she needs because I’ve been in a very similar place myself just last semester with anxiety and depression. I can look at a bag in Caley’s room and say, oh, you probably want that gone because you have bad memories of getting it. Or listen to what someone else is saying and know when the topic needs to be changed because it’s too stressful for Caley, because I’ve been in a place where that’s been too anxiety inducing for me, too. All of these abilities, plus our love for each other, make it so I can be a soothing presence for Caley and know how best to help her.
This is one of those areas where love alone is not enough to provide all the help someone needs – you need to be able to act a certain way and know certain things in order to be able to help. I have that knowledge, so I can. Caley can’t always be around other people that she loves and who love her, though, because since they don’t know how to act and what she needs, they take more “spoons” to be around. It’s not personal: it has nothing to do with love, and everything to do with knowledge.
I know for certain that Caley is not the only one who needs these things out of her allies. I know this because when I’ve gone through tough times, I’ve needed them myself. And it seems to me that this is good advice for interacting with other people when they are dealing with a lot of anxiety, too – which, given than anxiety disorders are HIGHLY common in people on the spectrum, means it’s probably useful information for all of you readers. So here I’m going to share some of the tips from personal experience that make it so I can be in a position to help Caley – and hopefully will help you help the people struggling in your own life. This list was made with an adult in mind, but most of it applies to children as well.
1. Show no judgment.
This is really important. If Caley (or I) feel judged, we’re not going to feel safe sharing our needs with you. If you’re the type of person who judges people who have messy rooms, and you came to visit Caley or me when we were struggling, guess what room you won’t be allowed in? Our messy bedrooms, even if we need help cleaning them. Even good-natured teasing should be avoided for fear of giving this impression. And DEFINITELY avoid any use of the word lazy. Difficulties with self-care and completing seemingly simple tasks have nothing to do with laziness, and everything to do with how very, VERY hard anxiety/depression can make completing such tasks. If you want to learn more about this, read my post “On the Effort Required to Make a Phone Call and Climb a Mountain.” http://www.autismspectrumexplained.com/…/on-anxiety-and-the…
(Spoiler alert: when struggling with anxiety I would have said the mountain was infinitely easier.)
2. Reduce the barriers to self-care.
When you’re dealing with anxiety and depression, doing the simple things needed to take care of yourself can become really, really hard. Even getting up and microwaving a frozen meal can be too hard sometimes. That’s why one of the first things I did when I came to visit Caley was buying her loads of easy-access meals. There are varying degrees of easy, and I got her all of them. Yes, I got her microwavable meals, for when she’s feeling like she has more energy/”spoons”. But I also got her a LOT of meal replacement drinks/bars. So when she feels like she doesn’t have the energy to get up and get food, instead of skipping a meal altogether, all she has to do is roll over and grab a drink.
3. Do what’s helpful for them, not what would be helpful for you.
My gut instinct when I saw all of Caley’s clothes on the floor (as mine have been in the past) was to fold them and put them in drawers. That instinct, however, was utterly wrong for Caley’s needs. Sure, the clothes would look nice, but it takes a LOT of energy to fold clothes, much less put them in drawers. Within days after my leaving, that system would have deteriorated and the clothes would be in a pile on the floor again. Instead, I gathered bins and just put them on the floor near Caley’s bed. Into one bin I sorted the dresses, another the pants, and another the shirts. Now instead of having to attempt to fold the clothes and open up drawers and put them inside, all Caley has to do is instead of throwing them into a random spot on the floor, throw them onto a specific spot on the floor.
This system, too, will deteriorate eventually, because even throwing things into the right spot on the floor takes too much energy some times, but it should last her much longer and make things easier for her to find in the meanwhile. It’s a system designed to make things as simple as possible for Caley, but in order to create the system, I had to see things from her perspective, not my own.
4. Avoid anything that involves conflict and be a calm presence.
When I was having my greatest struggles with anxiety, I couldn’t watch my favorite television shows anymore. What’s more, I couldn’t watch television at all. Even an episode of My Little Pony, quite possibly the least stressful show in existence, had too much conflict for me to handle. I would watch the intro, fast forward through the conflict, and watch the resolution…and even THAT was too much. I say this to give you an idea of how very conflict sensitive anxiety can make someone. So when I’m with Caley, I don’t argue with others. I don’t push her to go to the movies with me (or push her to do anything, for that matter) or talk about world news (which is generally stressful). I don’t tell stories about anything that involves even the slightest conflict, even stories that have happy endings, or even comment on being worried that we’ll be late somewhere. I try to be a very calm presence for her and only express positive emotions to the best extent that I can. This also helps in making me a predictable emotional presence, which as you might imagine is also important.
5. Be extra-sensitive of autism-related needs.
Caley normally does a pretty good job of functioning despite schedule changes or sensory issues. They’re hard on her, sometimes too hard and she has to leave, but generally she can handle them without showing how much they impact her. Not so when she’s dealing with anxiety/depression. If I say we’re going to eat at Olive Garden, even if we pass a nicer restaurant on the way, we need to go eat at Olive Garden. Of couse, we’re probably not going to be eating at an Olive Garden when Caley’s dealing with a lot of anxiety, because she’s more sensitive to sensory issues than usual and even with her earplugs it would be too much. Instead, this past week we’ve eaten at sushi restaurants…places with low lighting and most importantly, quiet.
6. Give them time and space alone when they need it.
Despite the fact that I’m the best ally Caley has right now, and I try REALLY hard to be a low stress presence, sometimes even interacting with me is too much. When that’s the case, I know it’s nothing personal and I give Caley her time to read fanfiction, or listen to Mindcrack videos (her special interest), until she tells me she’s able to interact with me again.
7. Reinforce their competence.
I am one of Caley’s biggest cheerleaders. So when she writes a paragraph for her homework assignment, or takes a load of laundry out of the dryer, or does anything that is hard for her, I will cheer her on and acknowledge how much effort that took. And even when she can’t do something, I will remind that I believe in her, even if things are too hard to do right now. Of course, different people need to hear different things when they’re going through tough times, but these are the things that help Caley.
8. Don’t push issues: no means no.
When Caley is struggling, advocating for herself and stating what she wants gets really, really hard. It’s already hard, as she’s written about in her post about visiting the dentist (http://www.autismspectrumexplained.com/…/self-advocacy-is-o…), so you can only imagine how much more difficult anxiety makes it. That’s why, when Caley says no, or even if she doesn’t answer a question (which is her way of saying no when it’s too hard to say), I don’t push the issue. I don’t try to convince her, or even repeat the question. Because she will say yes, if only as a means of ending conflict, even if that’s not what she truly wants. To push her in this state is to take her choice away from her, and that’s not only not okay, but that really hurts her. So when Caley says no, I trust her judgment and don’t press any more.
9. Help them get help.
This is one of the most important things on this list. Caley and I have talked about how very ironic it is that when you most need help is when it’s the most difficult to get help. When you’re struggling with anxiety/depression at the level Caley is (and I was), picking up the phone to call and make an appointment with a psychologist is the equivalent of climbing Mount Everest. It’s really, REALLY hard. So one of the things I’m doing for Caley today is calling her psychiatrist to schedule an earlier appointment for Caley, since she can’t call herself right now. Medication and counseling are two of the greatest weapons against anxiety, as I myself am evidence of, and though I can help Caley in the short term, in the long term she needs those to help her.
10. Don’t be afraid to admit you need help yourself.
Last semester, when I was having some of my greatest struggles with anxiety and depression, Caley was also struggling and needed help. I tried to provide it, truly I did, but when you’re struggling yourself you’re not in a good position to provide help for others. It’s like what they say on the airlines; you need to put your own oxygen mask on before you attempt to help someone else with theirs. Not being able to give Caley the help she needed was part of what motivated me to get help for myself. And it’s worked, as the help I’ve provided Caley with this week shows.
In the meanwhile, though, I needed more help to help Caley. So I reached out to our parents, people who love and care for Caley every bit as much as I do. And they stepped up to fill in the gap. My dad hired a tutor for Caley to come by and help her with pretty much anything she needed help with once a week. She takes Caley to doctor’s appointments, helps her complete her assignments, and provides emotional support for Caley as she completes these anxiety-inducing tasks. And my mom comes by and takes Caley shopping for groceries on the weekends. (They do a lot more than just these things, but those are just some examples.) Our parents’ efforts have helped Caley preserve her independence, while reducing the load on me.
That’s it – that’s all the principles I use to help me help Caley. I hope that they help you to help those in your own life…and to know when to get help yourself.
Like = Sending you hugs, Caley.
- Creigh
[Picture reads: "How to Help. 1. Don't judge. 2. Reduce the barriers to self-care. 3. Do what helps them, not you. 4. Avoid conflict in all contexts. 5. Be sensitive to autism-related needs. 6. Provide time alone when needed. 7. Reinforce their competence. 8. Don't push issues; no means no. 9. Help them get help. 10. Admit when you're over your head.]
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