telling the people close to me after I had been diagnosed as autistic

Telling the people close to me that I had been diagnosed as autistic was surprisingly less emotional than processing my own thoughts of my past and working out what autism meant for me.

I took about 3 weeks to tell the people close to me. I knew at some point I wanted to share my own story on my blog, and I wanted them to hear it from me first. With each person I told, I had a growing sense of relief and I felt myself owning my diagnosis a bit more.

I hadn't thought about what to expect when I told people, and at first, I was a bit puzzled by some of the responses. My husband helped me realise that this was new news to them, and they had no idea of how I felt about the diagnosis. Looking back, I realise that blurting out "I am autistic" might not have been the most subtle approach ... but then subtlety has never been my strong point.

I was amazed how my opening up about why I went for a diagnosis, helped me reach a new level of understanding with some of the people around me. 

The post below is the collection of thoughts I noted down during this period. 



Family

I called [my husband - OH] as I was walking from the office to the car. I told him about the appointment and what the psychologist had said. There was no shift in the world, and no life-changing insights as I shared the news. He offered me his support, wanted to know what I needed, and wished me a safe drive home. I had said it out loud and my autism was "out in the world". Right now I don't know what I need, but at least I know he is there for me no matter what.

Telling [my eldest] was even less eventful. He responded as only he would. I got a shrug and a reminder that he already thought I should be at autism school (he goes to a specialist school). He now often makes reference to me being autistic - usually when I get worked up about something. He has some odd views about autism, which has made me realise that it is one thing to acknowledge being autistic and another thing to understand what it means. We have to talk about his misconceptions some time, to clear them up.

I called Mum (she lives in South Africa) to tell her my news. The line was crackly and her hearing seemed to be having an off day. After repeating "I am autistic" several times with increasing loudness, and several wrong guesses, she finally worked it out. [My husband] was in stitches as he watched me squirming in the study trying to make myself understood ... no mum ... the world is not coming to an end .... I am not dying .... the kids are not dying ..... there is no major life catastrophe ... I simply have been diagnosed as being autistic. 

At first, mum was confused and uncertain. Were they sure? Was I sure? I didn't have the same challenges as my eldest when I started school. Yes, she struggled with me as a child and took me to see a specialist .... but he had said that my refusal to listen or do as I was told was down to lack of discipline and she just needed to be firm with me ... counting to 3 to get me to do things. I was always headstrong, and my teenage years were really difficult for her (and me) compared to my brother, but we got through them. We have never been that close, but she felt that things were really changing in the past few years and she was treasuring our new closeness that has started to develop. 

We talked for hours, about the things that I struggle with and how I felt growing up. We have never talked like this before. In those hours, I learnt more about mum, my family and my childhood. As we said goodbye mum told me it changes nothing for her, she loves me and has always been proud of me. 

My first reaction was "I should hope so too" as I am still the person I was yesterday and the day before that ... I just have a new label and new insights into myself. Nothing has changed. My second section was to look beyond the words and realise that it was mum's way of telling me that she loves me just the way I was. 

[My brother] was out to visit us from the U.S. and so I was able to tell him face-to-face. Once again, the talk lasted for hours ... or to be more accurate, I spoke at him for hours with him sitting at the other side of the table trying to adjust to the time-zone difference and Hubby sitting between us. I talked about our childhood, school, work, my conversation with mum and all my thoughts and insights into our lives. He nodded, made some comments and sat. Hubby thought I had been a bit full on and was expecting a major awkward moment the next morning when Brother stated " I am a bit confused, can you clarify something for me". Turns out he just wanted to know if people were coming to fix the broken glass panel in our conservatory two days later.

I have realised that my family and I have much more in common with each other than I thought. We have just never talked about it as we have never really been a heart-to-heart family. We are a "just get on and do it" family, we don't often share our inner thoughts or feelings but we will always be there for each other when it is needed. 

Friends

WhatsApp was the channel of choice to share my news with friends and neighbours. The message sent out was simple and pretty much went along these lines ....

I wanted to let you know that I was recently diagnosed with autism, after having struggled with increasing anxiety. It is not a big thing for me, merely a confirmation of something I suspected since [eldest] was diagnosed. I realise that I am not someone that you would typically associate with autism,  as I would not have thought of myself as autistic until I found out more after [eldest's] diagnosis. Happy to answer any questions.

There were no questions ... and once again I was told that it changes nothing for the people around me, that I am still the same amazing person they have known for years and that they hoped I would find understanding and insights that would help me with my anxiety.

Like with my mum, the gremlins came knocking at my door .... of course it changes nothing .... nothing has changed. I should hope they still love and care for me .... I  am still the same person. Again, I realised that this was their way of letting me know that they cared for me and loved me just the way I am. 

It is a great reminder to know that despite my being rubbish at staying in touch, not remembering birthdays, and often talking at them as I get carried away with sharing my thoughts without letting them get in on the conversation, they would always be there for me.

Work

I am on a roll now, and feeling much more confident about sharing my news with people. I have taken the next big leap and told my immediate team at work! 

This time there were no questions and no comments. A bit of a dazed look and silence. There is no easy way to tell people, it is not like this is something that you can gently ease into a conversation... or at least I can't. I can still see their faces as if I had dropped a bombshell ... guess it is not every day that your manager tells you something like that. I have become so used to saying it now, that I don't really think of it as a big revelation. I have to remember that most people may not feel the same way, and may need time to ease into the news. Especially at work. 

Thankfully, since my initial reveal the awkwardness has passed and I have been able to have several conversations with different members of my team. I still don't think that they can get their heads around the fact that I am autistic, however we have been able to have some really positive discussions where I have been able to talk about the situations that I find difficult. 

I have been able to discuss why I find these situations difficult, and we have been able to talk through how we can do things differently. Sometimes it still feels awkward and uncomfortable, like getting used to a new pair of shoes. I am trying to find the balance between being open and honest about what I struggle with, and oversharing my every worry and concern. At the end of the day, I am still their manager and I need them to retain their confidence in my ability to effectively lead them. 

We are making little changes, like ensuring that no one brings any new ideas to me in a group meeting. In this situation, my brain is likely to say no and I will come across as negative as my brain works through the new idea - especially if it is a deviation from a previously agreed plan. A much better approach is to write it down and send it to me to mull over, followed by a one-to-one discussion to talk through any questions I have. Once that has happened, we can then take it to the group for additional input.

At some point, I want to let more than my immediate team know however I am not yet ready to take that leap. 

In the meantime, I am continuing to focus on being me, not the thought of who I should be. I am also enjoying not feeling as guilty for so often rubbing people up the wrong way at work, and finding new ways to shape the world around me rather than trying to shape myself to fit into the world.


autism diagnosis assessment as an adult woman, working out what it means for me


After getting diagnosed sooner than expected, I went home with a new view of myself and the world around me. It wasn’t all in my head, and I could stop beating myself up for struggling with many things that came so easily to others around me.

As I worked through things, I found myself thinking about my past and all the things I have silently struggled with. Through it all, I kept asking could it have been different if I had known sooner. Since then I have realised that my experiences have made me who I am today.

At the time I might have over-analysed everything, but that microscopic review of my past enabled me to gain perspective and consider my past in a new light. Since then I felt unburdened of all the luggage that I have been taking on over the years.



The past few 24 hours have been a whirl of emotions as I replay the assessment and what was said over and over in my mind,  working out what being autistic means for me.

Leaving the office it was a matter of fact, I felt neither happy nor sad. It is what it is.

Driving home, I listened to the radio (Heart FM) singing along to songs that suddenly took on a new meaning. “I know I’m not the only one”, “Islands in the stream, this is what we are” and “Don’t stop me now”. I felt empowered and positive as I thought, “this is me, no excuses”. I wanted the world to know so that they may start to understand, and I wanted to change things for the better by showing that it was the world, not me, which needs to change.

I was supposed to meet up with people from work last night but had to cancel as I just wanted to be alone to think things through. I also couldn’t sleep as my mind was whirring with thoughts of the years gone by.

My primary school lunchtimes spent in the library reading Nancy Drew, whilst the other children played together on the playground. Never feeling alone, but never feeling like I belonged. The fear of starting high school as I struggled with the large number of people I didn’t know. Sitting alone on the field in the first weeks of high school, watching everyone else get to know each other. My tears and despair the next year when I started the new year and found that I was no longer with the few people I had got to know. The years of not fitting in, being laughed at, and being bullied. The number of days I took off sick because I couldn’t face heading into school when things became overwhelming.

I thought of university and feeling out of step from the other students who seemed so much more carefree than I was. My awkward attempts to integrate during freshers week, and my determination that post-school life was going to be different. My low attendance as I didn’t enjoy lectures with the hundreds of students, and found it much easier to teach myself from the textbook, and copies of notes from those who did attend. My seriousness about everything, and my inability to just go with the flow. My quest to be out partying with everyone else, but never connecting in a way that led to friendship.  The series of boyfriends interspersed with feelings of loneliness...  strangely, it was easier to bond in a relationship than it was to make friends however it never lasted.

Then I thought of work. My difficulties of integrating into new work environments, and the need to find a friendly ally before I could break the ice with the others (which sometimes took years). The common misperception that people have of me, and their surprise when they get to know the real me. My feelings of being an outsider and wondering why I couldn't make friends.

The years of thinking I need to do better and be better. The self-help books, counselling and coaching to try to improve myself. The guilt as I struggled with the demands of being a wife and a parent, and my growing anxiety as I increasingly struggled to fit into the world around me.

I thought of my history of friendships and relationships. Short-lived and intense. Each one completely different. I morphed into each relationship - the reggae lover, the alternative rocker; the raver, the 90s pop princess. The supporter of rugby, football, golf, cricket, F1 racing and rowing. The party-lover, the theatregoer, the classical music aficionado, the fine diner and lover of simple pleasures. The crafter, the baker, the homebody and gardener. The career women, the innovative thinker, the methodological planner, the confident trainer and coach, the bold go-getter, and the cautious questioner. I took pleasure in how different I could be.

All of them me at one point in time - many of them forgotten as soon as the relationship is over. Do I even know who I am, and what I truly enjoy?

Would it have been different if I had known sooner? Would I have felt less isolated and anxious? Would I have felt less pressure to try to be sociable and fit in? Would I have been more comfortable with who I am, rather than try to be someone I am not?

I can’t change my past, I know that. I do wonder though whether I can change the future and use my experiences to change things so that my son doesn’t need to go through life feeling the way I did.


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