Straight from the Source - Living With ASD and Anxiety
Posted on 09/20/18 in School by Milestones
Anxiety can be challenging for anyone to experience – it can keep you from doing the things you love, meeting new people, or often from pursuing new goals. Now imagine these typical hardships being paired with sensory challenges. Self-advocate, Raven Pressor, shares her first-hand perspective of experiencing anxiety alongside ASD and shares some advice on how to support individuals like herself dealing with this common comorbidity.
Raven, thanks so much for speaking about this personal topic. Can you tell us a little bit about yourself?
I'm Raven and I'm 36 years old. I live with my parents, and my hobbies include video games, crochet, knitting, reading, and spending time with my cat and two geckos. I have ASD and anxiety, and was not diagnosed with ASD until I was about 24 years old.
How would you describe the feeling of clinical anxiety to someone who has never experienced it?
For me, it first feels like I'm a little shaky and edgy. It can escalate into a queasy stomach, racing heart, tight throat that makes it feel hard to breathe, lightheadness or dizziness, and a weird tingly feeling in my face and hands. These symptoms occur during a full-blown panic attack. There are also emotional symptoms too, like an intense desire to return home if I'm out (a fight or flight response) and generally afterwards, some amount of shame at the loss of control.
Many neurotypical people live with anxiety, but don’t understand why anxiety can be harder to manage for individuals on the spectrum. Can you describe what it is like to have both autism and anxiety and how they interact with one another?
While many neurotypical people have anxiety, it can be made very complicated by being on the autism spectrum. Anxiety is generally an exaggerated fight or flight response, and causes your body to produce more adrenaline. However, adrenaline sharpens your senses, so if you're already dealing with sensory issues, this isn't exactly a helpful bodily response! It can turn into a vicious cycle of feeling anxious because, say, the noises of other cars on the road are stressing you out, then the noises seem louder because you're anxious, so you become more anxious. Body, brain… why do you do this to us?
Are there certain things that make you more anxious than others? Would you mind sharing what those things are and when you notice that they were inducing anxiety?
Some of the things that make me more anxious are car rides, particularly to places I'm already afraid to go (for example, the dentist), being given lists of tasks instead of one at a time (talk about input overload!), and fighting with others, which unfortunately happens when you communicate with other people. I've always gotten shaky and upset after fighting, and when I was given a list of things to do when I was younger and not diagnosed, I'd generally shut down and not do anything. I really realized the anxiety about car rides and going out in 2001, when I struggled with severe agoraphobia for a year.
Do you use any strategies in your every-day life to manage your anxiety in stressful situations? What are they?
When I become anxious or stressed, I generally shut down and refocus myself with something comfortable, like playing a video game, reading a book, or watching videos on YouTube. Unfortunately, these strategies aren’t always helpful, as my mom, while very understanding during actual panic attacks, tends to start getting angry if I don't do what she wants me to do in a fairly short time period. Then she can start picking at my flaws, which I'm sure everyone, both on and off the spectrum, finds anxiety-inducing!
Have you ever used therapy to manage your anxiety? If so, can you describe your experience and talk about how it helped you?
I have tried therapy for both my anxiety and my autism, but I haven't found it helpful. In fact, because I was forced into therapy in preschool as a "problem child," and was forced to continue until I was about 26, therapy lowers my self-esteem and makes me start experiencing depression. The therapists I've had have either been ineffective, giving me advice I could easily Google ("take deep breaths"), or have, again, picked endlessly at my flaws or emotions, making me feel like my feelings as someone on the spectrum aren't valid ("but you shouldn't feel that way when someone corrects you for saying something inappropriate").
What advice would you give to a friend or family member looking for ways to support an individual with autism in their life who lives with anxiety?
If you have someone in your life who has anxiety and ASD, or even just one or the other, my best advice to support them is to listen to what they're telling you. If they're out of their comfort zone and want to go home, don't say "just a few more minutes" or "you'll be fine". Accept that they know their limit. After a stressful period, the person with ASD may want to spend time alone, let them. Not being able to decompress, especially after being in a stressful situation, only encourages anxiety. And never blame someone for either their autistic or anxious behaviors. We can't help the way we are, or the way we respond to it. As long as someone isn't being violent and isn't causing harm to themselves or others, just give them the space to do what they're going to do to help them calm themselves after feeling stressed and anxious.
Do you have any advice for other individuals on the spectrum who may be struggling with anxiety?
If you have anxiety and ASD, give yourself space. Depending on your lifestyle and schedule, this can be anything from retreating to your room and doing a preferred activity to setting aside an hour a day that's just time for you to do something that you find relaxing. And do try to push your limits, but don't push so hard that you break down or melt down. Allow yourself to feel the anxiety and acknowledge it, because if you have it, I'm sure you know trying to ignore it doesn’t work. Take anxiety-inducing situations or settings in small steps, like first going to the grocery store and just stepping inside, then next time increasing the time and browsing, then moving up to buying one item. And try to communicate as clearly as you can if you need something. If you don't feel able to express it verbally, a note, text message, or email is sometimes an easier way to communicate. Good luck, and stay strong!
Milestones provides consultations with individuals and families to help plan, prepare, and prioritize goals at an ongoing level of support. If you would like to schedule a consultation for you or your loved one, please call us at 216.464.7600 or complete an intake form here.