Have you heard of the Curly Hair Project?
… probably not and that’s okay because I’d love to tell you about it! The Curly Hair Project (CHP) “aims to help women and girls with Asperger’s Syndrome and their neurotypical loved ones communicate and understand each other better.” Alis Rowe, the creator of CHP has Asperger’s and she loves to communicate to others how being on the spectrum affects her daily life and engage them in conversation. Alis feels “…her purpose is to [help others] describe their daily life experiences and challenges, in a clear and quirky way.” I was introduced to this online via a Facebook group run by the same organization and memes are often posted that frequently resonate with my own experiences with Asperger’s.
TWO Topics that Frequently Arise…
- Social Energy
People with ASD generally have less social energy than NT’s (neurotypicals), even though everyone varies greatly in their ability to cope depending on the hour, or day, or week etc. Having less social energy means that it runs out more quickly and requires more time to recover. Keep this in mind if you’re a friend or family member to someone with ASD and in addition, according to CHP, the best thing you can do to support them is, “…to help with the task (particularly any executive functioning difficulties they may be having), give them alone time, and encourage them to keep up with the things that energize them, such as their special interest.
…is also a common theme amongst those with ASD. Everyone can feel overwhelmed and anxious at times, however people with ASD will experience over-stimulation in a more exaggerated way, across one or all the senses and with more intensity than what an NT might experience. Unfortunately, more often than not being overstimulated is significantly disabling and negatively affects quality of life; my life is kind of like this, so I have to be wise and careful in my daily planning.
As a ‘high functioning’ individual with autism, I have developed and maintained coping strategies that make me appear that way; it is something I’ve had to work very hard at establishing. However, I am not ‘high functioning’ all the time (let’s be honest, no one truly is) because there are moments when I am in deep pain, mostly from being overstimulated and I will just shut down or meltdown (yes, like a computer). What the outside world does not realize is the majority of the time, under the ‘mask’ of ‘high functioning’ is that I am working extremely hard at keeping my composure. Most people will usually not see me shut down- ever and yes, unfortunately I am still learning to manage my time so I don’t shut down in public when I get overstimulated. The downside of being ‘high functioning’ is just that… I’m not always optimally functioning and can lose self-care and communication skills. Through engaging with other women on the spectrum via CHP, I have learned that we experience lower-low’s and a higher-high’s than most NT’s because our systems tend to be more susceptible to over-stimulation.
Being a part of the CHP online community has helped me realize that I am not alone in my daily successes and challenges with Asperger’s and the unique perspective offered by a range of women is very scintillating! Over the years my brain has compiled insights from various books, blogs, and articles and this past year I created a slide show to explain overstimulation to others and I’ve shared that below.
I’ll conclude by asking you this: what coping strategies do you use in your daily life to manage anxiety and stressful emotions? We learn, grow, and progress because of the positive influence of community in our lives.