What it means to be a late blooming Aspergirl and why now

Blue birds are one of my totem animals. I just love seeing them... they are one of the things that gives me a sense of calm. Anyhoo...

When I was younger, I didn't really wonder why I was different, though I was definitely sad when I was bullied or made fun of by other kids or when I didn't fit in. I tried to do what was necessary to seem 'normal', and sometimes it worked. But inevitably my conversational oddities or my inconsistent and weird social behaviors would drive people away, though not always. My mother used to brag to people how great it was that I could play by myself and had such a great imagination. I did make friends here and there. I could be extroverted with some kids if they shared some of the same quirks that I did, or if they let me make the rules in role playing games (like playing house), and some did, but if I didn't get to make the rules, I had a hard time understanding other people's rules. Or, it took me a while to understand them, and some people didn't have the patience to wait for me to get it. Which I now realize is characteristic of a girl on the spectrum. I'm definitely a visual learner and stubborn. I was called 'bossy' on more than one occasion. So that meant that inevitably, I spent a lot of time alone. I could pretend to like things the other girls liked for only so long because eventually it was just too hard and too exhausting. And if I let my guard down and stopped pretending and they saw it, our relationship would end anyway. In addition, I had some personality traits that were too hard for me to ignore. I was a rule follower, I was uncomfortable with pranks or teasing, if I wasn't interested in something- I wasn't a very enthusiastic participant, I was a picky eater, and so many more. It was better to be alone than to be with others and freak out about something they did that they felt was 'normal' and I felt crossed a line or I didn't want to do it. It felt like most of my childhood was made up of some level of pretend. 

The pretend extended to my family as well. Whenever we went on vacations or weekends away, I had to spend a lot of time with my sister, whether I liked it or not, and she liked to be in control at pretty much all times. I had to do whatever she wanted to do or she would throw a fit. It was easier to give in and do what she wanted, even if I didn't like or want to do it, than to risk a fight. And sometimes the fights ended in violence and I never won those fights. I have the fingernail scar marks on my arms and hands to prove it. So I pretended that it was ok. I pretended I liked what she wanted to do. Sometimes it was ok, most of the time it wasn't. Which is one of the reasons why our relationship was always so difficult and why I didn't speak to her or see her on a regular basis when we were adults. She didn't spend a lot of time with the family, she preferred being with her friends. So I spent more time with my parents, even hanging out with my mom on weekend days when I didn't get together with friends. Sometimes it was ok, we would get donuts for breakfast and go to garage sales and then stop at the mall to have lunch with my dad. Then back home to watch old black and white movies. In the grand scheme of things, it wasn't a bad way to spend a day. But part of being on the spectrum that I'm learning, is I am set in my ways. I like certain things and that's about it. Everything else is just 'meh' or 'no thank you'. I do like routines mind you, but doing the thing someone else wants over and over wears on me. So, I pretended to enjoy the kinds of movies she liked, the kind of music, the foods, etc. to make her happy. I didn't like disappointing or disagreeing with her. She would be extremely hurt if she was disappointed and some of her reactions were upsetting. So, as with my sister, it was just easier to do what she wanted to do. As I got older and wanted to spend more time with friends, she of course grew upset. And later, when I was an adult, when she would suggest one of those things and I said I didn't want to do/see/eat it, she would say, "but you LOVE blah blah blah", and I had to say, "no, I actually don't". I seemed to care less about hurting her feelings when I was older, reflecting on how much she hurt my feelings as a kid and how damaging that was to my own psyche as an adult. As I mentioned before, I have no poker face or tone and I had a lot less patience and tolerance as I got older. I was just too dang exhausted from doing what everyone else wanted, from being manipulated and controlled, and from pretending. Which led to me being a lot more controlling about my own time as an adult. That doesn't mean I never did it again, of course I did, but my circle of friends dwindled the more I preferred to do what I liked and what made me comfortable. And my relationship with my family was already so damaged by the time I left home, I was pretty much on my own anyway. And honestly, it was actually much more comfortable that way for me.

None of this led me to suspect I was on the spectrum until much later. Those who are neurotypical (people not on the spectrum) might not understand why someone might go after a diagnosis at all, let alone so late in life, maybe thinking it wouldn't matter or some other reason. I don't know what someone else with or without autism would do. While I could guess or assume, and I've done that in the past only to be wrong, I prefer to talk about what I would do. 

A family member who suspected they were on the spectrum talked about being tested. They were born with a condition that had comorbidities, one of which was ASD. I have a relative in grad school for psychology who I had talked to about it who sent me the Autism Quotient Questionnaire (AQ) which some psychologist's use as precursor for official testing. It is mostly given to adults with Aspberger's. Another family member was having her son tested and I knew of a couple other family members who exhibited signs of ASD, and I knew it could be genetic, so I decided to take it myself out of curiosity. 

When I took the AQ Questionnaire, the numbers didn't lie. There was a number range to fall into for being within the 'high functioning' or Aspberger's realm and that's where I fell. Four points higher than the cut-off in fact. I was both surprised and not surprised, relieved and full of mixed emotions. The test is not used to officially diagnose someone and some professionals say there are false positives and negatives, but that it's still a good indicator. After you get your results, it says to contact your primary care physician to get a recommendation for a psychologist who can do an official diagnosis. So that's what I did. 

I love my primary doctor. It's taken me 11 years to find one that I really like and trust and who is truly supportive of me. I sent in the request and he didn't question it, just sent me a recommendation for a psychologist with a PhD nearby that specializes in diagnosing and treating all ages on the spectrum, though Aspberger's is her speciality. I checked her website thoroughly and liked what I saw. In fact, one of the therapy's she's certified in is equine assisted psychotherapy and when I saw that, I took it as a sign. Horses have been one of my favorite things since I was very little. I read horse books (Black Stallion series by Walter Farley was my favorite) and collected Breyer horses and being around a real horse was always very calming for me. I can totally see why they are used as therapy. Unless you're scared of them like my husband is (who got a ton of brownie points for going horseback riding with me when we were dating since he knew I loved horses, though I wouldn't have let him go had he told me of his fear). So I called her and left a message about my questions and concerns. She called me back and visited with me and I felt confident enough to set up an appointment for a diagnosis.

I spent the time before the appointment doing a lot of research on adults and women with autism, being diagnosed later in life, characteristics, etc. Which should also have been a red flag. When I find a topic I'm interested in or want to know about, I research the crippity crap out of it. And I'm not talking Wikipedia or WebMD which are not reliable sources, but NIH, Mayo, and specific accredited doctor and psychologist studies and papers. I also tend to join forums to find information and resources and they are great places for support, but you do have to take what members say with a grain of salt as each person experiences things differently and everybody's body is different. And also maybe not mention that to your doctors because in my experience, they don't like to hear it. But I do tend to over-research some topics as well. 

My appointment was a virtual one because we're in the middle of a Pandemic. I have to admit, It's been nice for me as an introvert with social anxiety to be able to do virtual appointments. I'm much more comfortable in my own home. She ran through a series of questions from a more official ASD test and of course with me, we went off on some tangents. But in the end, I was officially diagnosed on the spectrum. By this time I wasn't as surprised, but I still had a mix of emotions. According to a new book I got and read over a couple days, recommended by this psychologist, called Aspergirls by Rudy Simone, there are 7 stages of acceptance, these are:

*Awareness- 'we find out about Asperger's and the information speaks to us but hasn't hit home yet. We might experience some resistance or denial'. 

*Knowing- 'the irreversible understanding that you have Asperger's. The realization clicks'.

*Validation- 'Asperger's explains so much in a life that often seems to have had no rhyme nor reason. This is not one moment but a series of moments that will continue for years, if not forever'.

*Relief- 'I can finally, as the song says, "lay my burden down". We don't know what our burden is until we're diagnosed, but we can tell other people don't seem to be carrying it'.

*Worry- 'what does this mean for my future and for my potential'?

*Anger- 'for all the blame and misdiagnoses that may have been laid upon us by ourselves or others. Hopefully we then get the next phase of our lives---'

*Acceptance/thriving- ' we become keenly aware of our gifts and deficits and use what we have wisely'

I am still working through the stages. I think I'm to and maybe working through anger still. I think I've reached a level of acceptance, but I'm not at thriving by any means. I'm still applying the diagnosis to my life, past and current. I'm still working through a state of comprehension, but that has also given me a sense of relief. I understand myself so much better now. Melt-downs have been fewer as I've begun to be kinder with myself and relax more, knowing some of this is truly out of my control. I've even begun controlling some of the behavior, though there are some aspects that will always be out of my control. And part of being aware of it when it's happening raises my anxiety. But my awareness then makes me realize that because I can't control it, I don't need to freak out about it. I've always been bluntly honest and over the years as an adult would precede some of the questionable behavior (like asking a thousand questions) with announcing it to the people I would do it to in the hopes that it would help. 

Overall, I'm glad I pursued a diagnosis and I'm ok with the outcome. It doesn't change me profoundly as a person because I was always on the spectrum, it just opens the door for me to learn tools to handle the more troubling characteristics like the anxiety and melt-downs. And I hope that if anyone reads this, they know that it's ok to pursue a diagnosis, that fear is ok, but the outcome could be a healthy and positive result. Even if it's not one that was expected.