I am a 70 year old woman. I had no idea until 18 months ago that I may be on the autism spectrum. I thought somebody I know may be, so watched an ABC documentary and sat slack-jawed as piece after piece fell into place. I had some idea about autism in males but not how it shows up differently in females, so that is it is often missed in their earlier life and they can be diagnosed quite late in life, as I was. I welcomed the diagnosis as explaining how I am and how I could be.
I have many traits which can be typical for women living with ASD. I am loyal, persistent, passionate, focused on justice and with an attention to detail. My passions relate to those interests: current affairs and activism focusing on justice, using computers, keen use of language, and fascination with people and their interests. They are common and useful interests, not less useful things like train timetables. As far as I am concerned, I have always understood these things about me and considered that all of these are positive things in my life.
While I don’t much like it, I can make small talk, and I can look people in the eyes. On the other hand I think more effectively if I look away to concentrate.
I ask about the things that other people are interested in: their families, their jobs, their pursuits over their lifetime, and remember them even while I don’t remember lots of events or locations.
Other people act as if they find me strange but I doubt if they could put their finger on exactly how, as for the most part I pass for fairly normal, as do many women living on the spectrum. I don’t know either. So dealing with people has always been problematic for me.
But I have also had a lot of struggles that I recognised and tried to find workarounds for. For example, I get very frustrated when people withhold information from me that they know and could provide and that I need to know. I am not talking about what will the weather be like next Tuesday. Predictions are getting better, but essentially nobody can know what the weather will be like. I consider that a genuine uncertainty. What is not a genuine uncertainty is when a manager or decision-maker knows something about a task you’re doing and withholds it so you can’t succeed. I developed intricate ways to find out stuff people were trying to hide. And I devised a process of deciding my best guess of the situation and acting on it until it proved incorrect, when I revised my best guess. It would be a great deal easier, with less effort, if people just gave you information. This can often be the actions of a bully who is trying to harm you, meanly. I would like to see much less of that in our worlds.
Faced with uncertainty, I become anxious and that is unpleasant and reduces my effectiveness.
I can make some repetitive actions but not to the point of headbanging. I like routines but they aren’t terribly obvious: taking a shower in a certain way, ensuring certain tasks are done in a particular order like cooking and the laundry, reading to fall asleep. They are all actually practical ways to get them done.
But it is how I communicate and solve problems with people which has caused me a lot of trouble for a long time. The first thing I can say is that I “don’t like surprises”. I really enjoy visits and social conversations but I want space to prepare myself for them. I used to ask a young friend if he would ring me from the other end of the Sydney Harbour Bridge to let me know when he was on the way. Not so much requesting permission but giving me advice. What do I want to do with that time? I want to think about getting myself into a welcoming mood from whatever else I was concentrating on. I want to gather ideas in my mind about things I might want to discuss or even suggest. You can see that this is relevant not just in one’s social life but especially in one’s “business” life of work or dealing with organisations.
I understand that this has something to do with “executive function” or how you plan your thinking. I haven’t researched it a lot yet on a theoretical level but I did find some workarounds. I try my darndest to get the people I’m communicating with about important information or decision-making to do so by email, not phone call or conversation. This way I get to take in what they’ve told me before I respond so that I’m sure I’ve considered all of the aspects. Then I develop responses and suggestions and think carefully about how I express them. It is a more rigourous process for me, producing better quality output and taking up less time for the other person. I am flabbergasted that there are so many people in the world who can’t stand doing that and resist my efforts to set it up.
My great hope for my ASD diagnosis is that I will learn more workarounds for that issue and other issues that I haven’t even paid attention to yet.
For lots of reasons, some of which may have to do with autism and some of which have do with other matters such as being fat or bright or female or nerdy, I have lived with a and exclusion. I have been surprised by how much worse it has been since I have disclosed the diagnosis in my relatively close circle. It seems to me that there is a great deal of misunderstanding and fear causing great
difficulties for people on the spectrum throughout their life. I would like to see much more community education and encouragement for inclusivity.
I am providing this submission at the deathknell because I have been totally embroiled for a long time on personal issues to be pursued and hopefully resolved in my life. They have got in the way of learning about the autism spectrum and that has been very frustrating and disappointing. I would be happy to provide further discussion and ideas if you wish.