The big question came to me,“how DO I feel” about the diagnosis? I kept asking myself this over and over again. I had so many emotions, so many questions, so many what ifs and what about …, that I just didn’t know what to do. What DO you do? So, I did what I always do, I obsessed about it in its entirety all day, every day and every second for a few weeks, to get it processed in my head. What did it mean for me, for my future? What did it mean for my past? What would it have changed things had I known? How would those around me react to the news?
After that, I finally felt a sense of freedom that I had never really felt before. I have never really been a follower, a sheep or someone who can be easily led, perhaps gullible at times but I’ve always had my own mind and perspectives. I am very opinionated and not generally affected by the views of others. However, I finally realised that the time and energy I’d spent in my youth trying to fit into society’s social constraints and failing miserably, were not entirely my fault which was a tremendous relief. It didn’t mean that I was no longer going to socialise, but it did mean that I could give myself the mental and emotional freedom to not feel so guilty because I don’t fit into the box. It also meant I could make better choices for myself and my family that truly suits our needs.
With the relief also came the feeling of being grateful for my new diagnosis. I am well aware that people feel early diagnosis and intervention is integral to ensure a positive outcome for those affected by ASD. My youngest son is certainly is proof of that, in my eyes however, for me I am certain an early diagnosis would have been made my life a living hell more, if that is even possible, than it had already been. For my eldest, I do feel that had we been more aware, perhaps I could have rescued him sooner; instead of thinking perhaps he was just quirky but would be ok eventually.
I chose to tell my two closest friends about my diagnosis. One friend I have known for quite a few years since I moved into our area. In fact, it was quite the AS moment, when we met. I had gone back to a local homeware store to collect a table that was part of a set, which I had purchased the earlier that day but I had, dimly, only picked up the chairs thinking everything was in the boxes. Due to my lack of spatial awareness and size perspective; I tried to fit this huge table into my small sports car. Yeah, she was laughing too at my stupidity. She was, though, kind enough to offer to take it to my house in her car for me. Thinking back now, how trusting was I to let some stranger put my new table in their car and hope they would follow me home? Heck, she could have driven off and I would have never seen her again. She also could have been some axe murder, not that I was paying much attention, because she was bringing with her a solution to my problem. She did, however, follow me and she has been blessed with my friendship ever since, poor sucker.
My mate took it all rather well. She already knew about my youngest issues and as I talked to her about it all, she just confirmed my traits to me. She also pointed out that now it makes sense why whenever we went out on a girl’s night, which was rare in any case, I always wanted to know every last detail about where, when, who and how things were going to go. Times, dates, outfit plans, money and travel were also on my list of required information for any social occasions. She accepted me for me and I think deep down made her love me even more. Who couldn’t love me? I’m great!!
My other friend, I’ve known for only a few years but she also took it well. She is a very honest, kind and sweet person, so I knew she would also accept me for me. My friend loves all the little quirky things about me and I feel she also valued my opinion, which convinced me that I was right in telling her. Telling them both made me feel better over all because I am fully aware of what people ‘think’ Autism looks like.
As for telling people in general, that took time. Those that matter were told when I felt I wanted to tell them and that was a very small circle shortly after my diagnosis. Everyone else was told by the usual social media about a year and a half later and this is what I wrote:
“This morning, I thought today is the day.The sun is shining, my children are smiling, I am healthy so do it. Today, my friends, I am coming out of my Autism Closet. Some of you will already know and some won’t. But today, I let it all out and tell you that I have Asperger’s Syndrome. Why am I telling you? Not because I want anyone’s approval, but because I love my children. I want them to know that their Autism, like mine, is nothing to be ashamed of. I am, in fact, proud to be Autistic, because it is part of every experience and every choice that I make in my life. It is hard at times, more than I could ever explain, but the positives for me far out weighs the negatives. My Autism is what got me through many difficult times but has also given me the full rich life I lead today. It has given me opportunities to thrive, create and take chances that others would not . I am who I am, because of me. Love me or not (if not, them please feel free to unfriend quickly before I do)I am proud of who I am and want to encourage my boys to feel free to be who they are with pride. I hope that those of you who don’t know much about Autism will take some time to learn about it, ask me questions, be open-minded. I am the same Jenn I always was, with a little added something special:) XX Thanks for reading.”
As I knew I was starting this blog and also starting to put myself forward for public speaking engagements and Autism advocacy, I knew it important that I was open to my “friends” as I was to the rest of the world about the issues I would be discussing. Also, as I said in my “statement”, I want my boys to not have any shame about their issues and be proud of who they are, the skills and know challenges. As a mother, I want them to be able to look to me as an example because they are my world.
Autism forums and Facebook groups were also a wonderful thing, in part, for me. I joined a few groups for women who have AS. The insight was amazing. It is one thing talking to friends and family about AS, but no one can truly understand like someone who shares that same condition. This is with any type disorder, syndrome, issue or situation. The support, the commrodery and meeting kindred spirits was both uplifting and as time frustrating. I can certainly hold my hands up and say with pride that I am certainly grateful to be part of the Aspie Sisterhood.
Now all I had to do was waiting for my diagnosis paperwork and I could finally put this baby to bed. However, it was never going to be that easy was it?