I use this blog as a platform to raise awareness and understanding of ASD pretty often but – as I covered in my blog post here – I’m not autistic myself. One of my sisters is, though, and she kindly agreed to let me interview her to allow me to fully communicate the perspective of someone on the spectrum. My sister is only 16 and was diagnosed with Asperger’s Syndrome just two and a half years ago. On here I call her ‘Aspie Sister’ (with her full support – she doesn’t see ‘Aspie’ as a negative term) so that’s been abbreviated to ‘AS’ for the interview.
Me: I wanted to do this interview to give people a slightly better idea of what it’s like to have autism and especially to have a meltdown because I think it’s quite hard for people to imagine or to empathise with. You got your diagnosis quite late, which is often the case for girls. So, did you realised you might be different to your peers before then?
AS: I think I always realised I was different. Thinking back to year seven – I don’t know why but I was going through a really weird phase – I’d always tell people I was insane and my password was always like ‘iaminsane’.
Me: I remember, actually, getting a text from you once saying, ‘Am I normal?’
AS: That rings a bell.
Me: And I kind of brushed it off at the time. I just said, ‘Oh well, what is normal anyway? Is anyone really normal and is being normal really such a good thing?’ Now – knowing – it shows you did have an idea you weren’t neurotypical even if you wouldn’t have known to phrase it like that.
AS: Yeah. I think one of the reasons I would always be like ‘I’m insane’ and I’d try to make a joke of it was because I was quite scared. Because, I was like, ‘I’m different. I don’t know what this is. Why am I not like everyone else?’ I just tried to put this front up and I was all, ‘Ah, I’m insane! I’m so funny!’
Me: Yeah. ‘I’m just the crazy one.’ Like…the ‘quirky friend’ because that’s obviously a ‘thing’ in TV shows so I guess you thought if you could embody that then it was still an accepted role in society?
Me: How did you feel about the diagnosis, then?
AS: I was so relieved. Most people are like, ‘It’s not a good thing you’ve got a diagnosis. Why are you happy you’ve got this label?’ But it is such a relief when I’ve been thinking I’m from a different planet. I thought no-one was like me. To have that and know there are other people like me is just such a relief. It also meant I could get help.
Me: You’ve had a lot of various support and it’s worked to different degrees depending on how well the person trying to support you understands ASD. There are some misguided attempts to help. People quite often think they’re helping by telling you to tell them when you’re having problems, don’t they?
AS: Yeah. Also I’m not good at speaking in person and teachers often say, ‘I don’t like emails much. Just come up to me and talk to me about it.’ And I’m like, ‘No, just let me email you.’ It really annoys me when they don’t email back but then they come up to me and just start talking to me about it and I’m like, ‘No! No.’
Me: Would you like to explain what having ASD actually means for you and your everyday life?
AS: I don’t know because it’s quite hard when you have it and…it’s just your life. People always ask me, ‘What’s it like to be autistic?’ But, I don’t know. It’s just how I am, how I see the world. For me, I can’t imagine anyone else seeing it in any other way. It’s like me asking other people, ‘What’s it like to be normal?’ I don’t know.
Me: The big thing I wanted to cover was meltdowns. I was wondering if you could talk me through what triggers them.
AS: For me it’s usually something social. If something goes really wrong in a social situation that can trigger it for me. Or if something to do with my routine gets wrecked, especially if it’s a routine I’ve had for a long time. Like when I always used to have to have spaghetti on a Sunday and then I remember coming home one Sunday and Dad said, ‘We’re going to have a barbecue tonight.’ I was screaming and Mum and Dad didn’t seem to understand why. They were like, ‘But you like barbecues.’ I think they struggled to understand why it was such a big thing for me.
Me: Can you remember from meltdowns how you actually feel?
AS: I guess you just feel very overwhelmed. A lot. It’s quite hard to describe and it depends on why you have the meltdown.
Me: So, it’s not always the same feeling? It varies?
AS: Yeah. And when you start to go into a meltdown you do start to lose control. And there’s this part of you that’s like, ‘No, stop it.’ You can see it’s just silly and you shouldn’t be doing it but it’s just this tiny little voice and the rest of you is like, ‘NO! This is so important.’
Me: So, there is a bit of you watching yourself from outside?
AS: Especially if I’m in a group of people it’s like, ‘Stop it, stop it. Everyone’s going to look at you. Stop it.’
Me: But you can’t?
AS: I cannot.
Me: It’s not something you’re doing out of choice.
AS: No. And I’ve noticed I have a lot of actions I just cannot control. They just happen. I often just randomly shake my head quickly – especially if anyone tries to talk to me. I’ll just shake my head: ‘No.’ Obviously, there’s that part of you that knows it’s bad that then starts to get frustrated and then that comes out so you get angry and upset and everything.
Me: So, it’s like a loop? It feeds into the meltdown?
AS: Yeah and that’s when, I think, other ASD people can get quite aggressive. I don’t tend to get aggressive but there have been times where I do get a little bit aggressive.
Me: It’s more just anger at yourself for not being able to stop it?
AS: And then I can’t control the anger and it sort of goes into this horrible cycle.
Me: Do you typically cry?
AS: I usually cry. Usually there’s lots of grabbing at myself and my hair – that’s something I do a lot – and various shaking and tapping.
Me: And I know you sometimes pace?
AS: Pacing: definitely. And then when the anger starts to build up I start to like, ‘Argh!’ (clenches her fists) And that’s when I’m grabbing even more and sometimes I’ll just be like…
Me: And as you work through the meltdown you often collapse, it seems. Does that happen a lot?
AS: Yeah. I think it all gets too much and I just can’t seem to function anymore so I just collapse and cry.
Me: It’s interesting because you lose control but there’s a part of yourself that says, ‘Don’t do this.’ When you’re coming out of the meltdown does the voice gets louder or is it that you cry yourself out or…how does it end?
AS: I usually just run out of energy. When I was in year nine I used to say I’d run out of tears. I’d just get to the point where I…couldn’t anymore.
Me: So, is there anything that can bring you out of a meltdown once it’s started? Or is that it and it’s just going to run its course until you run out of energy?
AS: I guess it depends on how bad the meltdown is.
Me: And maybe where you are and who you’re with? Would you be more likely to come out of a meltdown when you’re here, somewhere you’re comfortable, and with – for instance – Mum? Or, because you’re comfortable, would you be more likely to let go and would you be more likely to hold it back when you’re out with people?
AS: I try to hold it back more when I’m out with people. You want, so badly, to fit in. You just hold it all in and that’s often when – when I get home – it all comes out. I used to find especially on Fridays when I’d had the whole week at school I’d often just end up crying.
Me: So, after you’ve had a meltdown do you typically feel better than you did before or do you feel worse…or do you just feel numb?
AS: I think it depends on where I am. So, if it’s out in public or something, I’d feel worse afterwards but if it’s at home I usually feel better. Sometimes it’s just nice to let it all out.
Me: During the meltdown, is there much in the way of thought? You say there’s a small part of yourself that is just thinking, ‘Don’t do this,’ but other than that are you thinking much?
AS: There aren’t many thoughts but it often is a sort of cycle of what sent you into the meltdown but then it can start to reach out to other things so that makes the meltdown even worse because then you’re like, ‘And there’s this wrong, and there’s this wrong and this happened.’ I often keep saying, over and over, ‘I’m sorry.’ Especially if it’s with Mum or my boyfriend. ‘I’m sorry. I’m sorry.’ They’ll say, ‘Why?’ And I don’t say anything other than, ‘I’m sorry.’
Me: Do you think you’re sorry because you think you’re putting all that on them?
Me: Like you’re burdening them?
AS: I always feel like that. Sometimes when I get upset about something and I’m talking to my boyfriend he says, ‘Go and see your mum.’ And I’m like, ‘No, I don’t want to put another thing on her. I can’t do that to her.’
Me: Finally, is there anything you wish more people knew about ASD?
AS: Probably…that we are people as well. Some people get scared of us. People know of the ones who are quite aggressive and violent…or just because it’s unknown to them so they get a bit scared. Or some people just get very angry with people who have ASD and they’re like, ‘They shouldn’t be allowed to reproduce.’
AS: Just, if you hear one story of an ASD person who’s been violent or something then you get so many horrible people.
Me: (Sarcastic) Yeah, because neurotypical people are never violent! I guess it’s just ignorance, isn’t it?
Me: Thank you.