Hi! I'm 27, turning 28 next month, & I identify as several things: Daughter, Mother, Sister, Wife, Friend, Doula, Business Owner, Activist, an adult woman.....and most of as an Aspie. Aspie is what those of us on the Autistic Spectrum, more specifically those of us diagnosed with Asperger's Syndrome, refer to ourselves by. That's right, I'm Autistic. Most would never guess it. In fact some have told me I'm faking it. All because I don't fit the media's and their stereotypes. My oldest daughter is also diagnosed as High Functioning Autism/Aspergers Syndrome. In fact I was diagnosed as an adult, shortly after she was. My aspie daughter was misdiagnosed twice before getting an aspergers diagnosis. I myself was misdiagnosed 8 times. All because I can force myself to make eye contact, trained and educated myself on social rules & etiquette (though continually following them is incredibly draining and stressful), can understand some sarcasm and be sarcastic, and am overly chatty (especially when nervous which is a lot of times). Because of those things I appeared to be very social and therefore was assumed I wasn't autistic. SO far nearly all the research on not just Aspergers but ASD in general has been on males. What most don't realize is that females on the spectrum are different than males.
In other words Autism is a wide range Spectrum! You can meet 1000 ASD people and not find 2 people with the exact same "conditions and symptoms". Me & my daughter have some similarities yet many differences as well. And guess what? It's not something I can get rid of or cure. It's not something one can control. It is part of me and it affects me in every part of my life; in every part of my identifying selfs.
Each person with ASD is different. I know I have my meltdowns which as an adult may not appear as a meltdown. It usually looks like to others that I'm having an anxiety/panic attack or that I'm incredibly irritable/snappy instead when I'm in the middle of one. One of my biggest triggers is stress. Like when I'm overloaded with stress. And I never tell anyone (though I know I should but I never do) when I'm feeling overwhelmed and stressed out which leads me to bottle up my emotions until I meltdown. So it appears to come out of nowhere. SO over the years I had to come up with ym own coping mechanisms. I collect tamagotchis and keep one on me/in my purse at all times. They help distract me and calm down. Or sometimes I carry a small piece of cloth in my pocket that I can touch/rub. The texture helps a lot.
Also, so many talk about stimming, such as flapping hands or spinning in circles. I've never thought much about it. Until now. But I spin. Never in front of anyone. But ever since I can remember when I need to recharge or think or escape I go in my bedroom, turn up the music (out wear head phones) & dance around while spinning. Sometimes just spinning. & in those moments I escape my struggles and go into my little imaginary world, which while spinning it FEELS real. I even did it throughout all my pregnancies. Now after my diagnosis, as well as my daughter's, I keep noticing signs and when looking back there were SO many more! How could I have escaped my entire life until recently without someone noticing? I suffered so much when I was younger, all because I was constantly misdiagnosed. I'm glad I know better and my daughter was diagnosed as a child. Hopefully I can prevent most of the suffering I experienced. As an adult I can prevent and control most of my meltdowns but it's so exhausting. I rarely get days where I can stim freely. I'm afraid of my SO finding out and making fun of me for it, even though I know that's silly. That he loves me for me & I was that way before he met and that is something that I have no control over. But knowing social rules and knowing that spinning isn't considered "normal" I still worry.
I'm with a Neurotypical man (nonAutistic) & I'm always tense when my SO is around a lot. Not only because that disrupts my daily routine but simply because he doesn't get my ASD things and quirks most of the time thus getting angry and cranky a lot. He's never really affectionate or empathetic towards me ( or so I feel like that's the way it is but I know he shows his affectons the way he knows how). It causes me to have bouts of depression.
I was recently asked "If there was one or two things you wish he could understand or do differently what would that be?"...and here is what I came up with:
To be more patient with me and understand that I'm overly sensitive & emotional (even though it may not seem like it). For example whenever I have to leave the house and deal with "the real world" I come back home utterly drained and exhausted. Yes, I can make eye contact, chat/be social, be around others, and understand social rules & etiquettes.... But keeping those up is very tiresome and draining. Not to mention I'm home alone with the children all week long. So there are times where when he's home I need to lock myself away from everyone for a while to recharge. And there are days, especially days where I have to do errands, where I can't clean up the house and have dinner ready when he's home simply because I literally have no energy for it. Or he thinks things I find important are stupid and silly and therefore I shouldn't be so upset over them. I wish he understood that just because HE feels and thinks this way doesn't mean I (or others) do. I wish he would understand that my being quiet does not mean that I'm mad. I also have problems with getting overwhelmed and feeling like a failure because I can be amazing some days and do nothing on others. That feeling constantly makes me second guess my "Motherhood". At times I feel like my children deserve better. When my SO asks me if there's anything he can do to help or how I feel I admit I clam up and shut down 99.9% of the time. I don't know if it's the feeling of being "in the spotlight" or fear of rejection/lack of understanding or simply that I don't know HOW he can help nor how to tell him how he can help .
I do want to point out that having Autism is not an excuse to be a jerk. One should still be nice and pleasant.
Being on the spectrum also affects me as a friend and a Mother. I have very few close friends. Friends who know they can rely on me and understand that I need to be antisocial for certain periods of time. They understand and respect that I can sometimes go months, if not years, without reaching out and communicating yet I'm always here if they need me. Words cannot express HOW grateful I am to have y'all in my life (Jenny, Jon, Chris, Mandy, & Trisha). It affects while working or out in public. It affects me even while on facebook! Because I have social anxiety and paranoia due to my Aspergers. Those vague facebook statuses? I swear they're ALL about me even if I know there's no way they are! Silly isn't it? My logical self knows better yet it's something I have no control over. As a child I was overly social, always said the wrong and inappropriate things at the wrong times, and switched "cliques" all the time. Always trying to fit in. Now as an adult I don't care so much about fitting in.
It also affects me as a Mother. I LOVE my children. I love them dearly, to the moon & back & beyond. But there are times where I cannot stand to be touched and be near them. Those moments suck. Especially having a toddler and a baby. Because they don;t understand and they need that love and physical affection from Mommy. I know this. My rational side knows this. So i sit and wallow in self pity during those moments while I hold them. Counting down the milliseconds until someone else can get them & I can go take a few moments by myself. I also understand where my oldest, who's also autistic, comes from when she does things. I understand her reasoning, her thoughts, her behavior....and ironically the ones that irritate me the most are due to her ASD. Oh Karma, you are hilarious!
Don't get me wrong. Being an Aspie isn't ALL bad. It has it's moments as well! LIke I have a VERY good memory, my IQ is considered above average, I pick up subjects I find interesting incredibly quick! I just wish more people would be more patient with those of us on the Spectrum. I don't think there's an exact reason/cause for my autism. It just is. And it isn't going away. It's not a disease so therefore no cure. My brain just works differently than yours. Think of it like a processing system. Neurotypicals (non-ASD) are Windows while Neurodiverse (ASD) are more like Apple or Linux. We're still people just the same. I plan o writing more on ASD (Asperger Syndrome in particular, especially female asperger) in the future. Hopefully some have learned a few things!
Here are some great reads & videos on Asperger's Syndrome (particularly females with Aspergers), Sensory overload, and Stimming:
- List of common Asperger traits
- What is Stimming & why is it common among Autistic people?
- The risk is worth it. Thoughts on Friendship - By Everyday Asperger's
- Asperger Traits (women, females, girls) - By Everyday Asperger's
- 20 things not to say to a person with Asperger's - By Everyday Asperger's
- The Lost Girls: Misdiagnosed, misunderstood or missed altogether, many women with autism struggle to get the help they need. By Spectrum News
Suspect you or someone you know has Aspergers? Take this short online Asperger’s Test developed by the Cambridge Autism Research Center. Remember this does NOT replace an actual medical diagnosis. IF you suspect you or someone you love may be on Spectrum please try to locate a medical provider that can test and diagnose.