Health Care Self-Care on the Spectrum

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By Delaine Swearman

The year was 1987. I was seven years old and had just returned home from school.

Earlier in the day I had taken a spelling pre-test which would determine whether I needed to study that week’s “regular” words, or whether I could study the “challenge” words for the final test later in the week. I had misspelled the word “salad” as S-A-L-E-D. I was devastated. This was the first and only spelling word that I missed on a pre-test for the entire year, and I still remember my error 32 years later.

Upon arriving home, I discovered my neighbor at the table having tea with my mother. She greeted me warmly and asked how my day was at school. Despite having kept my composure for the entire day thus far, my demeanor immediately changed. “Terrible! I failed my spelling test,” I screamed, and I ran out of the room and burst into tears.

After a good cry in an adjacent room, I was able to calm down, and I overheard my neighbor say to my mother, “Delaine is the most stressed out second grader that I’ve ever met.”

In early 2010, I found out why I was so stressed out back in second grade.

I was formally diagnosed with autism at age 30, a factor associated with decades of stress, all of which had taken a huge toll on my mental health. Since my diagnosis, I have gradually come to understand those vulnerabilities related to autism. I have learned important strategies that I can use to take care of myself.

So, what are some of the vulnerabilities of being autistic that can play a role in mental health?

Let’s start with these: social isolation, loneliness, feeling disconnected, being ostracized and bullied, misunderstanding one’s motives, difficulty getting or maintaining a job, inadequate supports, feeling overwhelmed by the expectations of being “normal,” and sensory, emotional, cognitive, or empathy overload.

One also must deal with the constant anxiety and frustration related to autistic thinking patterns, such as handling changes in routine or coping in situations where decisions might not be fair and answers are incorrect.

Some of these vulnerabilities appear earlier in life, while others might pop up later. I was not diagnosed as autistic until adulthood, but I definitely felt a sense of isolation and was ostracized even as a young child. Problems with misunderstandings, maintaining a job, and a need for more support did not become apparent until I was an adult. Those issues coupled with serious mental health struggles led to my eventual diagnosis.

There are a few specific vulnerabilities that I’d like to address, as well as some helpful suggestions to managing them:

1:

Social isolation, loneliness, feeling disconnected and being ostracized

As a child, I intuitively knew that I was different. I felt like the Ugly Duckling. I learned the technique of “camouflaging” or “masking” early on. In public, I put on my mask and became an actress, trying my best to mimic the other kids, to show interest in what they liked, to talk as they talked, in hopes that they would invite me into their group. It worked, somewhat. However, it is incredibly tiresome to act all day – by the time I got home at the end of the school day, I was on the brink of a meltdown. To fit in with co-workers as an adult, I was constantly trying to maintain my “act” and didn’t have adequate downtime. As a result, my mental health deteriorated to a point of crisis.

Camouflaging is definitely useful in certain social situations, but it has to be used in small doses. I was not being authentic when I was camouflaging. The goal should be to get comfortable with oneself and with others so that there is no need to camouflage. As I am more comfortable with myself and sharing my autistic identity, I find that this is becoming easier.

It is also easier to be yourself in a setting that isn’t face-to-face. There is no burden of eye contact, awkward pauses, misheard statements, or expectation or an immediate response. I’ve made connections and feel less isolated and lonely now that I frequently communicate with people online in Facebook groups, emails and texts.

In addition to my online friends, I meet people locally by participating in activities through Meetup.com by searching topics of interest such as “hiking” and “free events.” Even though I do not have deep relationships with any of the people in these groups, I feel accepted and less isolated when participating in group activities.

2:

Feeling overwhelmed by the expectations of being “normal”

The answer to these challenges is to take a break. Autistic people need downtime. Having unstructured time with no expectations of social interaction is as vital as food and water. I am not so-called “normal.” I am autistic, and my brain is wired differently than a non-autistic brain. My brain easily becomes overloaded and it needs recovery time to reboot.

I purposely schedule appointments and activities with at least an hour or two in between, never back-to-back. If I must participate in a conference or holiday event or am otherwise engaged for an extended period of time, I will keep the entire rest of the day free to “recover” afterwards. I give myself permission to leave an event when I’ve had enough. Like camouflaging, not having enough downtime can have devastating consequences on mental health, both in the short term and long term.

3:

Everyday anxiety and frustration related to autistic thinking

I’ve gradually built self-awareness. I am able to tune into my own emotional climate. When I realize that I’m getting increasingly frustrated about a situation or stuck on an issue, I know that it’s time to take a break.

This goes along with managing emotions. Autistic people experience emotions at the extremes. Disappointments are devastating and good news makes me ecstatic. My entire body will vibrate with strong emotions. I manage strong emotions best when I have private time and space to process what’s happening. When I am fuming mad, I might scream and get stuck in a spiral that goes nowhere. Alternatively, I could start writing furiously or go for a walk, sorting arguments in my head. When I’m given the time and space to write or walk, my body calms down, my thinking slows, and I start processing information to handle my emotions and take the necessary next steps.

It’s also important to educate others and advocate for my own needs. It’s not fair that I should always have to assimilate to a non-autistic “normal”. However, it’s partly my fault if I continue to be miserable when I don’t speak up. If I’m at an event and the music is too loud, I can tell someone that I have sensory issues when loud music is a problem for me. Likewise, I can educate others about my preferred communication methods and need for regular breaks or advance notice of changes.

Being autistic can definitely be stressful. Before I was first diagnosed at the age of 30, I struggled with managing my mental health more than necessary, simply because I didn’t know that I was autistic. Almost 10 years later, I still face many of the same vulnerabilities as before, but I’ve come to understand and accommodate my autistic needs. Hopefully, I’ve shared some useful strategies that others can use as well.

Delaine Swearman is an autistic and mental health self-advocate living in Pittsburgh, Pennsylvania. She does public speaking and is writer for Pittverse, a magazine written by solely by adults on the autism spectrum. Delaine spends much of her time engaging in peer support at the Sally and Howard Levin Clubhouse and is a member of the Pittsburgh Paddlefish Dragon Boat Team. Delaine is the proud aunt of two nephews and one niece and has one “fur baby,” a 15-year-old cat, Emma. Delaine also enjoys walking outdoors, practicing yoga, and attending local craft shows and festivals.