WillowHope - Asperger Syndrome Blogger

A lot of people have asked me lots of things regarding telling a person without and Autistic Spectrum Disorder (a neurotypical, or ‘NT’), that you have Asperger Syndrome (AS), and so I recently did a video on the topic, but I will write it all up here for you also.

Do I tell people? Do I tell work? Do I tell school? Do I tell my friends and family? How do I tell someone? When do I tell them?

Unfortunately, there is no clean cut answer because everyone is different and it’s all entirely up to you what you do. It’s especially difficult for me to tell you what to do because I don’t know you, and I don’t know your family, so I can’t know how they are going to react.

An Unknown Level of Understanding

This issue with telling an NT is that you have no idea what their level of understanding is, before you get to them to tell them about it. They may have seen a film or a TV show where someone was portrayed as having AS – and there seems to be a lot more of that going on recently, which can actually be unhelpful. It’s unhelpful for several reasons, but mostly because the character with AS has usually been written in one of two ways; the first is very casual, light hearted, and their friends find them to be funny and quirky – but they haven’t really given them enough symptoms to portray it as something that is actually a struggle, which means you end up with people thinking that it’s just a pointless diagnosis that years ago would have just been categorized as ‘geeky’ or a bit ‘odd and that it’s just been blown out of proportion.

You also get characters at the other end of the scale, who have been given every single symptom to the worst degree, taking the ones that people most associate with AS and blowing those up completely. So, for example, they will talk completely monotone, about their obsessions, at a person and not to them, and they, rather than looking at a person’s mouth or nose, as a lot of Aspies have learnt to do, will dart their eyes anywhere but the person’s face.

Bearing both of those scenarios in mind, you end up with people thinking that you can’t possibly have AS because you don’t fit the version of it that they’ve seen portrayed in the media, and that you must just be making it up for attention/for benefits/to get out of work etc., you get the idea/[insert accusation here].

And that’s why it’s so hard to approach them, because as I said, you have no clue where they sit with it based on what they’ve seen or heard: an unknown level of understanding.

Knowing How to Tell Someone

The issue I’ve found in the past is that telling someone can feel very much like another appointment with a psychiatrist/psychologist/counsellor/therapist etc. When you meet one of those people for the first time, you have to tell them everything, from scratch, about yourself, despite having probably done that several other times at other appointments – and because you’ve done it so much before, it starts to feel boring and scripted, which in turn starts to make you sound monotonous. So when confronted with having to tell an NT, it can be easy to slip into doing this, thinking that you need to tell them everything about yourself and the AS so that they can have a clear picture in their mind, but what actually happens is that you word vomit in a monotone voice, which doesn’t help the situation at all.

The only people I’ve really told are my family and my school, when I was in the last couple of years. With school, you really hope that they have some, however brief, knowledge of Autism or Asperger’s already, and so I just told them that I’d been diagnosed and then paused to see what their reaction was going to be. But, in that environment it is more acceptable to just hand over the diagnosis report and then they can go through that in their own time.

Telling Teachers or Bosses

If I was personally telling school or work, in a non-social way – so, not my friends and not my co-workers, but the teachers or the people that I work for, I would only do it if I was sure that it was going to be an issue, so; if I knew I was going to need some kind of help or support because of my AS, or if I was going to be acting strangely and it had no other explanation, etc.

If I’d decided that I needed to tell them then I would just saying something like: “I’ve been diagnosed with this thing called Asperger’s – I don’t know how much you know about it, but this is my personal report, so this is how it specifically affects me, and this is a leaflet about it in general, in case you’ve never heard of it before at all. If you have any questions, it would be great if you could ask me, rather than me trying to explain a bunch of things that you might already know.”, and hand over my report and a leaflet that I felt did a good job of explaining AS.

The great thing about that is that you’re never not going to be able to answer a question that’s about you. The worry otherwise, is that you’re going to word vomit everything that you can think of, onto this person who really can’t process it all.

Telling a Friend

When it comes to friends, I tried to do it in a very casual way when I told people at school, and it worked really well, so it’s how I’ll explain it here. I started off by just simply saying: “I have something called Asperger’s.” and then going on from that to say: “It just means that I’m a little different to you and there’re a couple of things that I struggle with that you might not struggle with, but there are also things which you struggle with, it’s just that I struggle with them a lot more than you, so you might feel like you understand, but it’s difficult for you to understand just how much I struggle with it.”

After that, you could go through a couple of the things which you do struggle with. For me, a big one was being really clumsy (because of the dyspraxia), so I just said: “You know, I trip up and fall down a lot and that’s because I’ve got dyspraxia, which is something that it quite a common diagnosis alongside AS. I’m really awkward and quite shy, so you’ll just have to excuse me because sometimes I don’t get jokes, sometimes I’m the last one to cotton on to what you’re all talking about – and that’s okay, I don’t mind, as long as you don’t mind, but if you do see that I’m struggling with something, if you could just ask me what’s wrong or what I need, that would be really helpful, otherwise, just leave me to it.”

At the end of the day, I don’t care if people don’t want to help me, or if they think that I don’t have AS – they can leave me to get on with it and I will leave them to get on with it, it really doesn’t matter. Just going about it super casually worked really well for me and everyone was very nice about it, and even if they didn’t like me or what I’d said, no one ever said anything to my face about it. I just wanted to be really light hearted about it, and just be very blasé in that – “I struggle with this, it’s fine, I try my hardest and I will try to get along with everybody but sometimes I’m just not going to understand something and sometimes I might feel a little overwhelmed because I’m not very good with lots of loud noises and crowded spaces or being touched unexpectedly.” And again, asking them to ask you questions is always the easiest thing to do once you’ve covered it in a light, cut down way because you want them to understand but you don’t want to annoy them by talking about yourself without any input from them.

Telling Your Family

In my opinion, this is the hardest one to tackle. Largely, they’ve known you, quite well, for your whole life and it’s usually going to be hard for them to accept that there’s something ‘wrong’ with you (unless they had an inkling of it beforehand). I don’t like to think of something being ‘wrong’ with me, but it will mostly be how they look at it since you’ve been diagnosed with something, and usually when that happens it’s something bad, and it’s fine for them to assume there’s something ‘wrong’, they’re bound to. They’re going to be used to everything that you do already, and it’ll be so difficult for them to all of a sudden have to think about any of it as being a negative. However, they might be able to accept that those things add up to something called Asperger Syndrome, and since they know that you do/have all of those things, then that’s fair enough.

The most important thing to realise is that nothing has changed. If anything, it’s a positive thing because you now understand yourself more and actually, you would like them to be happy for you now that you have that clarification. Initially, telling them can be really laid back as I explained before, and it can get as heavy and deep as they want it to depending on how they take it, what they already know and how many questions they want to ask, and how much effort they make to understand you better. Whilst skimming over things to begin with, pick out the things that you really struggle with (which might be different for everyone), so that they have a place to start understanding, rather than just a generic description of AS, but like I said, how in depth you go will depend on a lot of things.

You need to try and understand that they might not be aware that there’s anything wrong with you (whereas you might have known for a long time) – you’re their person; their son, daughter, sister, brother, grandchild etc., and it must be really difficult to be suddenly told that there’s something ‘wrong’ with you, in the same kind of way that it’s really hard to be told that someone has a broken leg, had a stroke etc. – there’s always a huge amount of worry because of the unknown elements. You’ve been through assessments and seen professionals and at the end of all of that you’ve been given a diagnosis, and that will be hard for them to hear, especially when you say that it’s been there forever, it will be there forever and there’s no ‘cure’ – but, there are things that you can do to help.

In their mind it will be hard to process the fact that nothing has actually changed, and they may think that you must have changed, which would force them to look at you differently. But you need to try and get them to understand: it has always been there, it will always be there, which won’t be easy, since they’re just finding out in this single moment of time that there’s something ‘wrong’ with you, and it’s always been wrong, because they didn’t know before, and didn’t think anything was ‘wrong’ then, so how can it be now?

After everything, you do need to try and move past things and say: “It’s fine, I’m happy that I’ve been diagnosed because it means that I can finally understand myself and I now have methods of helping the things that I’ve always really struggled with – I can talk to other people with AS, there’s things like cognitive behavioural therapy; there’s all kinds of things that I can now access, if I want t, that will be really helpful for me, so I don’t want you to be upset: I’m still the same person that I always was.”

Asperger Brain vs. Non Asperger Brain

It tends to only get really, really difficult when the person that you’re telling thinks that you will just be able to ‘work on your problems’, in the way that people without AS do. If somebody is uncomfortable or not very good at/with something, the ‘normal’ thing to do is to repeat doing it more and more until they get better at it – and it’s very difficult for them to understand that it doesn’t really work like that for someone with AS. For some things that we struggle with, the more we do it, the worse it can get – for me, if I think that logically, the more I do something, the easier it will become, and I go out and do it, I end up closing into myself more each time I do it and get more scared and more anxious and I get more and more burnt out, and it takes longer and longer to recover, until it’s just not possible to try anymore. And that’s not an easy thing for them to comprehend, because for them, the more they do something, the better and easier it becomes, so they can’t get out of the habit of assuming that it must be the same for us.

I understand that it must be hard; however, it would be nice for someone without AS to have an open mind and to just believe the words that we say – so when we explain something to them, about how difficult something is, for them to take it at face value. But what seems to happen over and over again, is that we tell them something and they think about it and process it in their NT brain; so we’re giving them an issue from our AS brain, and they’re solving it in their non-AS brain, without realising that their solution cannot translate back into our AS brain. Hence why we’re however far into our lives and we’re still not anywhere close to being super social or figured out how to solve our issue with x, y or z etc. – yes, we know that we should, and we know that you can; we’ve tried to do it your way and every other way and it’s just not working.

Being Offended and Losing Friends

If you just go up to a person and say that you’ve got AS and you expect that they will understand and be understanding and accepting, then it’s going to be very difficult, very quickly because they probably are going to have questions, they’re probably going to be quite offensive because they don’t know about it and they think they know about it or they think that because they’ve seen a character on TV or read about and you don’t fit with that, that you can’t possibly have it – and so they’ll probably offend you, but you can’t get offended – I’m sure that there’s things that we’ve thought about NT’s that just aren’t the case and they would be offended, but we don’t have an understanding of each other so we can’t make these assumptions when they’re not based on experience.

We can’t know what each other feels, just like you can’t with anyone, however with things working differently in our brains to theirs, it’s completely impossible. And that’s something that you both need to understand and explain.

I’ve always felt that if you don’t need to tell somebody because it’s not obvious and you don’t need any help and it’s not really going to change anything for them, if they know, then why do it? It’s so difficult, so why bother? And whilst it shouldn’t ruin a friendship or a relationship, it can do, because we don’t understand each other, because of stereotypes, because of perceptions and misunderstandings, because they think you can just work on your problems etc., and for them to suddenly look at you knowing that you have AS, it can change things, which is really, really awful and it shouldn’t happen, but it does.

If it does happen, then they just weren’t a good enough friend/person for you, because regardless of everything, if you have a friend and you’ve been friends for a while, or are just good friends, then it shouldn’t change that and if it does then you really are better off without such a closed minded person, which is of course no consolation when you no longer have them, but it’s true and you’ll see that long term.

Summary

Whilst it is difficult and different for everyone, the things I’ve listed above a at the very least, a good place to start. Getting hold of a good leaflet about AS is useful for the person you’re telling, but you do need to give them some specifics with regards to how it affects you personally, otherwise they will assume that you’re exactly like the leaflet suggests. If you are worried about verbally doing this, then write it out as you would have said it, and give them that instead – this is probably more acceptable for work/school and for close friends and family. Just remember that everyone will be at a different level when you get to them to explain what AS is, so it’s easier to start off very light and basic, and have them ask questions, rather than going in with too much information and burying them with things that they can’t comprehend and don’t understand.

Thank you for reading; I hope you have found this to be helpful.

For more about Asperger’s, click here.

Blog Archive 

Written by Willow Marsden — August 15, 2014

Hello!

Welcome to my site, hopefully you will find something of interest here, I try my best! There's lots to see in this sidebar and the footer so be sure to have a good look around!

My Latest Tweets