8 Things Women on the Spectrum Want You to Know

It’s hard to believe this is only the second time I’m discussing my autism spectrum disorder (ASD) diagnosis. The first time was my “coming out” blog: Aspergirl Gone Rogue. It’s genuinely like that, in a way. As someone who has worked extensively with special needs youth, and is both autistic and a lesbian, the disabled community is a minority group that faces far more stigma, misconceptions and miseducation than the rainbow community does* nowadays. It’s not an oppression competition by any means, but it’s worth exploring.

*speaking from my own experience, observation, and as a New Zealander dwelling in primarily liberal circles

Before I crack into it though, to orient ourselves in this piece: here are two lovely graphics, courtesy of Aspiengirl.com, for a profile of how high-functioning autism presents in women and girls. (Click on the image to enlarge it)

1. We are not uniform and we are not linear.
   • as the saying goes – if you have met a person with autism… you have met one person with autism. We exist on a spectrum.
     
2. When we hit peak overload/burn out, we have very little control over our meltdowns.
   • They can be embarrassing, disruptive, and happen without much warning, or be triggered unexpectedly.
   • They make us feel childish and irrational, but they just happen sometimes – usually when we have been overstimulated for an extended period. Getting help and support to manage and mitigate these meltdowns is the best course of action. Whether it’s a trusted friend, a partner, or a whānau member – ask for what you need, (ideally pre-emptively) and learn what helps you recover.
   • You will probably never witness my meltdowns unless you a) live with me and/or b) you’re a highly trusted person in my life.
     
3. We also experience the inverse, known as “shutdowns”.
   • This can look like selective mutism, withdrawal, difficulty responding to present events, and both physical and mental fatigue.
   • I experience shutdowns far more frequently than meltdowns, but the end result is the same: a big ol’ hibernation period required to rest and re-cooperate.
     
4. Sometimes we just need space.
   • Working to blend in and feign neurotypicality, commonly referred to as “masking“, is exhausting.
   • Sometimes the best thing you can do for us is leave us to it.

4. Stimming and other self-soothing behaviours are really helpful for us to regulate our emotions and manage our stressors/anxieties.
   • yo: if you see me running my hands over my corduroy pants, twirling my hair, tapping my fingers together, wearing earplugs or noise-cancelling headphones, changing the lighting, moving to a quieter space, feeling textures, singing under my breath or other quirky vocalising – that’s just me stimming/self-soothing. It helps keep me calm, self-regulate my emotions, and it helps to distract me when I am experiencing sensory overload.
     
5. “Everyone is a little bit on the spectrum” is not a helpful turn of phrase.
   • I understand the sentiment and perhaps intended solidarity, but it comes across as dismissive: trivialising our identities and the accompanying struggles we have on a day to day basis.
   • Many people may relate to isolated aspects of autism at any given time, but that does not make them autistic. Autism is just a different neurotype, and the truth is that neurotypicality is often almost as diverse as neurodiversity is.
     
6. We deserve a formal diagnosis, if we choose to pursue it/if we want one – regardless of our financial situation.
   • Typically, the earlier the better – because then we can access the resources and support we need to reach our fullest potential.
   • Getting my diagnosis at 20 was the most affirming experience for me, and it gave me a sense of relief and explanation – it essentially put my childhood and teenage experiences in context.
     • however, getting to that point was laborious and exhausting, to say the least:
       • Firstly due to dismissal: both by loved ones “Why waste all that money?” and my GP “It is unlikely that you have autism because you don’t score highly enough on this [male-centric] diagnostic test”.
       • I am not alone in this experience. The more I have connected with other Asperger’s females – both in online spheres and in person – I have heard, related to and empathised with their similar stories of misdiagnosis and being not taken seriously.
       • Secondly, even with a diagnosis – I still get “you don’t act autistic; you don’t look autistic”. As much as you think it might be – this will never be a compliment. It just reveals prejudice, whether subconscious or otherwise. Many are genuinely just uninformed or lack awareness about how autism can look. At the end of the day, it’s often an invisible disability. In the same way that being a lesbian doesn’t actually “look” like one thing or mean you have to act in a specific way. Of course, there are stereotypes – but there is no one way to “be lesbian” or “be autistic”. People just are.
         
7. So many of us get misdiagnosed, sidelined and shoulder-shrugged off.
   • As a 16 year old, I worried whether I had bipolar disorder. I went to a counsellor at school with genuine fear and concern and was dismissed, laughed at, told I was worrying about nothing, and belittled. I felt completely misunderstood, humiliated, and about ten times worse coming out then I when I went in.
   • I also thought I might have ADHD – which is often co-morbid alongside ASD, sharing a lot of similar traits. It also has some polar opposite ones, and I don’t fit the ADHD profile.
   • At 20, when I told my GP that I wanted to get tested for ASD, as mentioned above, she told me she didn’t think I had it. Boy was she wrong ❤
   • My formal diagnoses of insomnia, depression, and anxiety are symptomatic of my ASD.
     
8. We deserve to be understood, valued and celebrated for who we are, just like everyone else.
   • Women on the spectrum, much like anyone else who is neurodiverse in some way, commonly share some highly valuable characteristics – see graphic below:

For real: I could talk about linguistics, language learning, philosophy, religion, education and music for yonkssss – if only there was a willing and enthusiastic audience at my beckoning call… 😉

There is so much more to say, but I’ll end it there for now. Until next time, e te whānau. Stay curious, connected, and conniving.