My autism diagnosis: telling the people close to me

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. 

Second assessment

I still have the second psychometric assessment which will provide me with greater insights into the way that I think. I am a little nervous about that one, I don't know why. With just over a week until the assessment, I can feel the anxiety about the day building and am now quite keen to get it over with. 

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.

2 comments

  1. Sounds like you are getting on with the 'news' just fine :) Hope the next assessment goes well! x

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    1. it is now almost 3 months since I first told people and so far it has been a most positive experience, leading to new conversations and exploring new ways of working with the people around me. The second assessment was a lot more challenging than the first - will be sharing what happened next week.

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