Going further on understanding ASD term, the link with previously used Asperger name and suggestions on moving forward

Welcome to the second article of this conversation, Asperger disability neurodiversity. It has been great to share with you my initial views on this in my first article. On this second article, I wanted to share with you some of my experience about talking about ASD with family and relatives. And I've done this because when it comes to sharing our reality or who we are or what we are facing, there's always that doubt, if you want, of thinking, how are people gonna see me and how they gonna understand what I do? In the case of ASD, which stands for autism spectrum disorder, this is more important than ever.

To start with, I wanted to tell you that when I was diagnosed and when I was informed about ASD, it was very much going back to the term aspergillus. And that was because I heard the term before, because people around me knew the name, and more importantly, because I had to communicate what I was having, what I discovered about myself. And guess what? When it comes to neurodiversity, there's still a lot to communicate and a lot to share for people to understand what's about and what that means. In this case, with ASD, when I mentioned about aspergillus, some people knew about it, which in that respect is great. What didn't work so well was that some of them did not know at some extent what that would mean.”

That's why very, very quickly, I started referring myself as having ASD. Now, the term ASD is less common than aspergillus, although, as you might know, is the correct term. And when I communicated about ASD, I had even more reactions of not knowing how to talk or what questions or answers they will provide to me. There was once I spoke to someone I know, and I said, just so you know, I need to share with you that I have ASD. And it was almost embarrassing for that person to just not being able to verbalize that, actually, I don't know what ASD is. So that person started making questions like, oh, what do you mean? Explain a bit more”. That brought me to the reality, which is once we share, or when someone shares that has ASD, it's very important to accommodate that alongside some comment, alongside some words, to explain what ASD means. That's something that I would like to dive a bit more.

ASD is a technical term, it's really clear, and it's the term ideally to be used when referring to this. Aspergers, also discuss the Asperger syndrome, etcetera, or simpler, Aspergers, it's not quite the requirement here. There's a lot of reasons and opinions about not using that term, and I'm not gonna go into it, because this conversation is not about technicalities. This conversation is about sharing my point of view.

When I said ASD, and I remember one family member, I spoke to her and said, well, I have ASD, and said, okay, what ASD, what do you mean? I said, well, it's autism, autism spectrum disorder. I can tell you that those three words, isolated, carry a lot of weight and a lot of preconception for a lot of people. Let's say about autism. Obviously, there's a lot of degrees of autism, and that's the important to keep out ASD, because it's a certain degree, it's a very light degree, it's a degree.

People hear about autism, they might know someone, or they might hurt, and there's a lot of stereotypes out there about it. So saying to someone, I have a degree of autism, really starts unraveling that preconception of people. So people immediately, by the form, might start thinking, oh, do you mean you're autistic, or what's happening here? So that's the first word. And the word spectrum, which is right, because actually that is what tells you there's a huge variability in terms of degrees, is very technical, is correct. Again, not the most common word used by people. When you come at the end, and you say it's a disorder, which obviously not, it's an alteration, just not really makes the best result with a lot of people in terms of being open and being willing to understand better. It's like you put different blocks in front of them, different words, very technical terms, which in essence is one of the reasons for having this conversation, to start talking about ASD. So people understand what is ASD, how people with ASD run their lives, what I have learned myself in my experience with ASD.

Ultimately, as time goes on and there's other people talking about it, and we share that knowledge, the term ASD becomes an acronym, three letters, the people know what we're referring. When you ask them what ASD stands for, they might not have the answer. And that's okay.

I don't want people to remember what ASD stands for. It's about the people, it's not about their neurodiversity in itself. It's the people with neurodiversity, people with ASD that we want to go there and explain that we think differently. Sometimes, sometimes we think the same, sometimes we think differently.

And by thinking differently, we contribute in a different way. By thinking differently, we approach problems from a different way. And by thinking differently, we make the world more complex and richer. Complexity when it's cause problem, not something you want to go for. Complexity when make people discover, be curious and know more. It's definitely a good thing.

I'll tell you another experience I had with sharing with ASD. In this case was about on a job interview I had. And I have shared recently with a prospective employer about ASD.

And that person was like, what do you mean? I say, well, it's autism spectrum disorder, also known as Aspergers. She said, oh, Aspergers, yeah, I've heard about that. I'm not that familiar, so tell me a bit more. And I think that's really where we could be going. We can say, I have ASD, or I know someone who has ASD.

If someone doesn't exactly know what that means, be brave enough and confident that making the questions like, oh, I'm not sure, can you tell me a bit more about that, can be received in good terms by the people sharing that name or that ASD. In the case that, that's not the case and has happened in some cases when I say, well, I have ASD. Even people that have heard the term, which is a good way forward, have been faced with comments like, oh, but you look totally normal to me, thinking, how do you want me to move forward from this, right?

I just share with you something very personal, and something about I have, something I have, and something really close to my heart. And what I got back is like, oh, you look normal, as if having ASD would not be normal. And you remember on my article, I talk about normality.

So really, when it comes to these, and it's something I do now with having learned a lesson back then, that if I share about ASD with someone, and someone takes it like, oh, but you seem normal with me, or actually, I wouldn't tell. Then is when I very quickly say, well, it's not about telling, it's about understanding. I'm sharing with you, because I want you to understand. It's not about you telling if I have ASD, or someone has ASD or not. It's about you understanding people that have ASD. And of all the lessons I have learned, probably this is one of the most important.

Being able to go with the truth, be respectful, understand that you cannot be direct with that person, because simply you don't want to portray like, I know everything about ASD and you don't. It's more about, look, it's perfectly fine, you don't know, let me tell you what it is so you understand better. Unlike everything in life, a bit of light touch is better than going straight to the point or in too deep.

So for me, it's more about gauging the situation, sharing if you understand what ASD is. Perfect. I can tell when that's the case, because people say, oh, great, thanks for sharing. That's great to know. And if it's a manager or someone else, or let me know how to support, if you want to discuss further, I'm here for you. That's probably the best answer anyone can give. When that's not the case, and that happens more often than someone would like, then the best approach is to, yeah, very light hearted, just explain, well, just ASD is about this. It's for you to understand, we can have some time, more time to discuss at some point, and that's it. The journey is not easy, as you can imagine, and it requires a lot of effort and a lot of work around it.

All I can say to you is that, through this conversation, I will carry on sharing experiences, I will look for people to have interview, to either have ASD or have neurodiversity, or people that have interacted with me in the past, and they can see how I was, or how I was behaving before I knew about ASD, and how they see me now. And sharing those experiences of how someone with ASD see the world, and how people see others with ASD through their eyes, I'm very confident this conversation will do really good for everybody to understand ASD. And in my next article, I will tell you more about ASD and coming to the terms of it, and how I was diagnosed, how I found out, and how I initially reacted, and later accommodated myself.

That's gonna be for next article. In the meantime, have all a great day, and if you're enjoying, remember, you can always follow, subscribe and look for us in your podcast service.

Have a fantastic time.