Today I’d like to help the helpers. This one is for the parents, teachers, therapists, caregivers, and other supporters of autistic people.
I’ve had problems with anxiety since I was a little girl. I’m in college now and I still rely on my parents to mostly take care of me. I have some significant developmental delays, and I’m working on skills like cooking and driving. My anxiety problems make it harder, and I’m behind my peers in many areas.
My dad has been incredibly helpful in teaching me and guiding me with everyday tasks. He is one of the reasons I’ve achieved as much as I have. I’d like to talk over some of the strategies he uses with me, and things he knows about me.
Maybe you know an autistic person with anxiety. I’m not identical to them. But the things that help me may also help them. I’m writing this in the hopes of teaching you a little what it’s like to cope with anxiety as a young autistic person, so you can better support and understand the person you love.
1. I’m doing my best.
The world is confusing to me. It can be noisy, inconsistent, and overwhelming. I have a hard time navigating it, especially in new situations. Running a single errand can wear me out.
Researchers are investigating what they call the “intense world” theory of autism, and it basically means that when you’re autistic, everything feels more extreme. That fits with my experience. Everything is louder, scarier, and more in my face. Sometimes it’s also more beautiful and exciting. I think I appreciate ice cream at a level that non-autistics cannot fully comprehend. Everything is more intense.
Overwhelm, anxiety, sensory issues, motor skill limitations, and all kinds of difficulties can make everyday life a struggle. So I may not always be able to do what you ask me to do.
I hit invisible obstacles every day. Sometimes I’m able to stay resilient. Other times I get frustrated or discouraged. My abilities can vary from day to day.
Please keep in mind that the world is designed for non-autistic people. Autistic brains are not fully accommodated. The world is not always a sensory-friendly, predictable, flexible place. This means it often takes more effort for an autistic person to accomplish things. It can be exhausting.
I need time to recover after a difficult task. I need several hours of quiet time each day to stay emotionally balanced. I also need lots of sleep every night. Without these, I’m a lot more likely to break down and cry.
You can’t fix everything for me, but you can remember that I’m doing my best, and you can do your best to make my life a little easier.
2. I want to please you, but I may not know how.
I want my teachers and caregivers to be proud of me. I want to see you smile and hear you say that I did a good job. And I love hearing that I helped you or cheered you up in some way, whether it’s because I folded laundry correctly or wrote something that made your day a little better.
It can be hard for me to figure out what you’re thinking and feeling. Understanding non-autistic people isn’t intuitive for my autistic brain. I have to guess what’s going on in your head. If you don’t say “I’m sad” or “I’m frustrated about things and it’s not your fault,” I may have no idea.
Please tell me what’s going on. Tell me how you feel. Tell me what you expect from me. I’ll do my best once I understand.
If you tell me what you want and I give up, check what’s going on. I’m probably struggling with the task. Maybe I don’t know where to start, or something’s in my way, or I don’t know how to solve a problem. If you show understanding and take a collaborative approach towards the problem, it can help a lot.
Instead of trying to make me do it, try to figure out what’s stopping me. Perhaps…
- I don’t know what you want. (Please tell me.)
- There’s an obstacle in my way. A bad sensory environment, motor skills challenges, or something else might be stopping me.
- I have an unmet need. I’m tired, overwhelmed, hungry, thirsty, hurt, sick, or over-stressed. I won’t be able to do it until I get a break, a snack, or appropriate care.
- I’m not developmentally ready for it.
You can try to figure out what’s wrong. See if there’s painful sensory input, or if I’m sick but don’t realize it, or if I’m tired or stressed or hungry. Sometimes I know these things, but sometimes I genuinely have no clue why I feel so bad.
I may be able to answer your questions if you ask what’s wrong. I might be able to say “I’m overwhelmed” or “The loud noises hurt.” But if I say “I don’t know,” you can assume that I’m dealing with a problem that is hard to articulate. Taking a break is as close to a one-size-fits-all solution as it gets, so try that and see if it helps.
Slow down, talk to me, and listen to what I have to say. Give me time to think and respond. When in doubt, help me take a break. Maybe I can try again.
3. I struggle to have faith in myself.
Even before I knew I was autistic, it was obvious that I was different. My peers didn’t want to be my friend. I got hit and kicked when I tried to join in. I wasn’t as fast as everyone else. I got upset and cried in situations where everyone else was calm. I didn’t always know why I was like this, and without an explanation, I could conclude that something was wrong with me.
And as I gain familiarity with autism, I hear all the negative words people attach to it. Burden. Epidemic. Tragedy. Illness. Desperation. Deficits. Devastating. Failures. There are long lists of all the weaknesses I have. Hearing positive traits associated with autism helps me, but I can still hear the implications that I’m broken. And when people don’t expect much of me, I notice.
My sense of identity isn’t that stable. It’s easy to be influenced by others’ words.
I need help learning to believe in myself. I need to hear all the good parts of autism and know that they’re part of me too. I need reassurance that I belong in the family or community. I need to hear that people love me, including the autistic parts of me, and that I’m likable in your eyes. I need to know I’m worth having around.
As my helper, you can support my confidence as I learn new skills. Positive reinforcement really, really helps. Please tell me what I did well. Please tell me if I’m improving on a skill. Let me start trying it myself, and help me feel proud of my work.
It’s not all about external validation. Building skills and working on my strengths helps me feel good about.
Encourage me to try things myself. Let me work on things that I’m good at, so I can get even better. The satisfaction of saying “Look, I did that” is powerful.
You can’t control how I feel about myself, but you can give me a push in the right direction.
4. Sometimes I need extra support with tasks.
I may get overwhelmed by a task that makes me nervous. Sometimes I hide from the things that scare me, and that’s not always healthy. I know I should do the task, but I get scared. It’s a little less scary if we face it together.
Here are some ways you can help me with a difficult task:
- Talk it through with me. Help me plan out what to do. For example, if I need to make a phone call or an email, help me write out what I want to say.
- Remind me what’s next. Sometimes I forget or get nervous about the next step. Gently tell me what’s next. Even if I already know, having you help me stay focused can help. (If it’s annoying me, I can ask you to stop.)
- Start small with new skills. First, model it for me. Let me watch while you explain how to do it. Then involve me a little, having me do some of the steps, or asking if I remember what’s next. Then watch me do it all by myself. Then try letting me do it while you’re in the next room so I can call you over if I need you. Eventually I’ll be confident enough to do it on my own.
- Go easy on my mistakes. It can be hard for me to cope when I mess up. Tell me that it’s okay. Say I can try again. Assure me it’s a common beginner mistake. Give gentle corrections without making me feel bad about it. It helps me remember that it’s not a catastrophe.
- Sit with me. Let me do it, while you stay with me to help me stay calm and focused. If I’m mostly okay doing it myself, you can even bring a book or your phone so you can read things.
- Try connecting it to my interests. This can make it more fun for me, and may help me feel more motivated too.
- Be patient with me. I may not learn as fast as my peers. My anxiety may get in the way. My motor skills are impaired. Please keep encouraging me. Tell me not to compare myself with my peers, and just focus on learning at my own pace.
- Listen to my self-assessment. Sometimes I’ll say “I can do it” and I’ll want to watch me try. Sometimes I’ll say “I’m not ready yet” and I’ll want you to model for me or I’ll want more practice with the easier stuff first. Take my thoughts into account.
And sometimes I think I need help when I actually can do it. You can encourage me to try again. Give me directions, or model it to me. Sometimes I just need you there for backup, and to remind me not to give up yet.
5. Talking about my feelings makes them more manageable.
I have big feelings. They can overwhelm me. Sometimes I break down and cry. Other times, I hold them inside me like a hurricane in a glass bottle.
If you slow down and ask me about it, I may be able to talk it out with you. Doing this can help me feel a lot better.
Open-ended questions are hard to answer at times. Questions like “How are you?” involve so many factors that I freeze as I try to analyze it all. If I seem confused when you ask me about why I seem upset, try questions like:
- “What’s on your mind?”
- “What’s bothering you?”
- “What happened?”
- “Is this about X, or something else?”
It can also help to keep in mind what the intersection of autism and anxiety looks like. Both of these cause strong feelings, and I’m probably going to perceive things differently.
- I see the world differently. Something that’s disappointing to you could be heartbreaking to me. I mourn things (like broken objects) that other people brush off. I worry about things that other people ignore. I’m not wrong, just different.
- I have strong feelings. I may be a small person, but I have big emotions. Please understand that I can get overwhelmed. I need patience and empathy, not judgment.
- I can’t “snap out of it.” If I could, then they wouldn’t call it an anxiety “disorder.” My feelings are here, so please don’t tell me to hide or ignore them. Instead, help me handle them.
- “Odd” behavior helps me cope. Rocking back and forth is reassuring. Petting a stuffed animal feels good. If I’m not hurting myself or others, then don’t try to stop me. This is healthy for me.
- I may worry about the future more than you realize. Getting older usually means more responsibilities and less support. Since I’m struggling already, that idea can be terrifying. I need you to take my fears seriously, and also help me plan for the future so that I know I can have support and things to look forward to.
- A good listener can be really helpful. If you have the time and energy, you can offer a listening ear and a shoulder to cry on.
Start with just listening. Once I begin talking, don’t jump in with advice or corrections, even if you think I’m wrong. Stay with me and listen to me. There may be things on my mind that you don’t know about yet. And if you interrupt me, I might be hesitant to open up.
Validating my feelings helps so much. The instant you tell me that you hear me and that it’s okay to feel this way, the bad feelings get smaller. It calms me and makes me feel like I can trust you. It really helps if you tell me things like:
- “That sounds upsetting.”
- “I’m sorry to hear that.”
- “It must be stressful to be so worried about X.”
- “I can see that this is important to you.”
- “I believe you.”
- “It’s okay to feel that way.”
Once I’ve talked out all my feelings, I’m usually open your ideas. After you listen and validate my feelings, it’s a good time to give me advice and reassurance.
- Tell me you’ll be there for me. I feel less scared of the future if I know that I can turn to you for help when I need it.
- Give me information that I need. Recently my parents told me “we won’t kick you out of the house the minute you get your first job” and now I’m way less stressed about the future.
- Help me make a plan. Write it down if you want. Tell me the steps I can take to manage my problem. If I have to have a difficult conversation, try writing a script or role-playing with me.
- Remind me to focus on the things I can change. Sometimes I worry about political and global problems. Help me focus on smaller-scale ways I can make the world a better place.
- Help me get help. If you can’t solve my problem but you know someone who can, then help me get in touch with them.
If the problem takes time to solve, then it’s good to follow up with me. I really appreciate knowing that people are looking out for me.
6. Surprises and uncertainty scare me.
As you may recall, I live in an intense world. It can feel frightening and unpredictable. Routines and reminders make it more predictable, and they help me feel safe. Surprises can be really jarring.
Warn me in advance about changes of plans, even if they’re “good” changes. I like having time to adjust. Surprise parties are a no-no. If you want to invite me somewhere, give me time to think about it. Sometimes my knee-jerk reaction is a “no,” but after I think about it, I decide I want to do it.
I take longer to process in general. When it comes to surprises, it takes even more time.
Avoid startling me with sensory input. Loud, sudden noises like a slamming door are scary. Being touched from behind is frightening. Sometimes it feels like I live in a horror movie, because anxiety and sensory sensitivities are like that. So if I can see things coming, I don’t feel so scared.
It may take time to learn the things that startle me. I really appreciate you trying.
7. I need people to remind me of the goodness in myself.
I don’t want to feel helpless. I don’t want to end up hating myself. I don’t want to feel like my autism is a shameful secret that I need to hide.
Please tell me about my good traits. I can be socially oblivious, so I can’t always tell if other people admire something about me. I’d love to know if you think highly about me.
Here is an incomplete list of words that caregivers have called me:
- Too sensitive
I hear these words, and I internalize them. On bad days, I remember these words, and I tell myself that I must be difficult to love. I wonder if my family would be happier without me. I wonder if the bullies who make fun of me are right about me after all.
It increases the urge to hurt myself. I feel like I don’t deserve anything good. I neglect my own needs to the point of physical pain, just to make life more convenient for everyone else.
The opinions of my parents, teachers, and caregivers are important to me. They tell me who I am, for better or for worse. I don’t always know who I am. Your words influence me, so please think before you speak. If you’re frustrated, please use your words mindfully, and express yourself without calling me names.
Maybe tell me some good things about autism too. When people speak nicely about autism, I hear that my disability doesn’t make me less lovable. If people encourage me to be okay with autism, they are encouraging me to make peace with who I am and what I need. And I may feel more comfortable advocating for myself and asking for accommodations.
I don’t need pity. I don’t feel sad that I was born autistic. I have a lot of strengths that I didn’t talk about here. I work hard on being OK with being me. And when other people treat me positively, it helps.
I’d like to remind you that I can only speak for myself. This article is limited by the fact that:
- I’m 23 years old, anxious, and still reliant on caregivers in many ways. Many autistic adults are more independent than I am, and won’t need as much help as I do.
- Not every autistic person will relate to everything I write. For example, autistics who don’t have anxiety problems are unlikely to feel that it’s like “living in a horror movie.” (Thank goodness.)
- This advice is more likely to apply to helping teens and kids. Autistic adults might need less support.
- I’m only one person. If you need more advice, try #AskingAutistics.
- This is based on my diagnoses and temperament. Please tailor your approach to the individual’s needs and personality.
If this does mostly apply, feel free to print it out or email a link to teachers, caregivers, and therapists.
Different people have different needs. You may find that this article rings true in some cases, but not in others. That’s to be expected. Take what’s useful in your situation and discard the rest.
If possible, ask the autistic person how you can help!
Mostly I just encourage you to be kind, be patient, and assume the best when you’re in doubt. That can make a big difference.
Thanks for listening. I hope you have a good day.
For more tips on helping an autistic loved one, I recommend wikiHow’s “Supporting Autistic People” articles.