Sometimes people with autism feel like they're getting 'too much information' and need a few moments to filter through it all. This is called processing time.
Jo and Holly
Tim and Andrew
Not having enough time to process information can feel very confusing for an autistic person. In my case, I’ve always compared it to a computer crashing.
Ever been in the situation when you’ve been repeatedly clicking a button on your computer to the point where it crashes?
That’s what it can feel like when I don’t get the time to process all the information given to me! But, when I have all the appropriate things in place to help me process that information, my mind can understand everything. It helps me to have all the information given in a step-by-step fashion, whilst still being full of details I can easily understand!
However, there are some days where I don’t get this extra time to process information and this can affect me a lot, physically and mentally. While I’ve had a fair share of understanding, I’ve also had a fair share of ignorance. When people haven’t given me enough time to process information, it can lead to me feeling anxious as well as confused due to not understanding what’s going on and, in the worse-case scenario, I can have a meltdown.
I can tell when I’m about to have a meltdown as I often feel unable to speak as well as feeling panicky.
If I’m not able to get out of the situation which is encouraging the meltdown, it can end up in me exploding into an intense bout of crying. Sometimes I can lash out at other people due to acting impulsively in response to me feeling very anxious. Even after getting out of the meltdown, it can take a toll on me physically and mentally as I feel very exhausted after, especially as it can take a few hours for me to recover from it.
Many people with autism often need some extra time to process information, be it sensory information or even just what someone’s saying.
As an autistic person, I can relate to this all too well! In my case, I need more time to process information when doing work at college as well as just understanding what someone has said to me.
In terms of my education, in the past I’ve had my lessons made more visual in order to help me learn better in class, as I find it easier to process the information that way. I also have had instructions given to me in a specific step-by-step fashion because I find it much easier to understand what’s going on when someone explains it in detail. This also leads to less anxiety as I prefer to have a clear set out routine for each day where I know what’s going on.
I hope this has given you an insight into what’s like to process information when autism comes into the scenario!
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The invitation to get involved in the TMI campaign came at the perfect time for Holly. She’d just come back from a really hard day at school and was fed up with everyone judging her for being different – that day she’d had a meltdown and everyone had just stared.
Holly immediately felt the campaign was a great way to explain autism and encourage people to be more understanding. After reading the script, she grew more excited and the film seemed to reflect her own experiences so well, particularly how she can need extra time to process information. For example, when we’re in a shop staff will often say ‘Hi’. Nothing wrong with that, but when there’s no response, they follow it quickly with a question like ‘Are you off school?’ Silence leads to another question ‘Are you doing something nice this afternoon?’ and so on... The more questions, the more overwhelmed Holly gets. She may have been laughing and chatting when we joined the checkout queue, but is upset when we leave.
Holly has always been a happy soul but found ‘early years’ education overwhelming. Free play, that most children thrive on, was chaos for Holly and she was told off regularly. When Holly told us she liked the (naughty) mat to sit on we realised she was happy to be told off, so she could be on her own and wouldn’t be so overwhelmed by the noise and other students around her. With her diagnosis of autism (age 7), we were finally able to put in place the support Holly needed.
At home, we have been open with Holly about autism so that she understands herself and her emotions.
Numerous solutions were put in place at primary school, which later aided transition to secondary school. Small adjustments at Holly’s current school have also made a huge difference, such as allowing Holly to move between lessons ahead of the bell to avoid crowds, to use ear defenders when she needs to, and to wear a wrist band that acts as a fiddle toy and indicator if she’s getting stressed.
When Holly’s feeling overwhelmed at home, she calms down by going to her room, plays the piano or cuddles one of our cats. But public meltdowns are much more difficult to manage. The stares we receive during a meltdown are damaging.
When a stranger sees a girl of secondary school age being overwhelmed like this they often assume she’s having a tantrum, rather than recognising what’s actually going on. Whenever this happens I feel a need to calm Holly down to avoid judgement, but my anxiety often makes things worse. On one occasion, Holly had a meltdown at a friend’s house (she really struggles with change and was overwhelmed when the pizza being served was different to usual). That friend was great and said she would watch over Holly’s sister so I could focus on Holly. Supporting an autistic child is much easier when you are not worrying about what people ‘might’ think.
Holly started secondary school hoping to make a ‘fresh start’, but peers noticed she is ‘different’. ‘Fitting in’ was not going to be easy and Holly made the bold decision, with the support of her SENCO, to explain autism in assembly, during World Autism Awareness Week. In the meantime Holly was offered the role in the TMI film. Talking about processing time and meltdowns is great, but when she was able to show an amazing film, featuring herself, it was so powerful. Holly's sister Katie said,
I am really proud of my sister for having the confidence to act out difficult situations that affect her everyday life. I also struggle with delayed processing and I'm hoping the film will encourage people to be more patient.
Holly has become so confident and proud of who she is. She wants everyone to be accepting and understanding of autism and to think about how they can make the world a more autism friendly place. Holly said:
If just one person sees the film and is more understanding of autistic people, I’ll be happy. People can do really simple things to help autistic people, like not rushing someone to respond to a question or giving them space if they’re feeling overwhelmed or having a meltdown. Small changes can often make the biggest difference.
A friend who has an autistic child, recently thanked Holly for coming forward and getting involved. She said Holly is a voice for all those children who are not able to describe their autism.
We are all very proud of Holly.
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Riding a raging current of thoughts in an intense world doesn’t make things easy when trying to process information. As a result, people on the spectrum can seem, on the surface, like not the sharpest people in humanity. But don’t judge a book by its cover as that’s a recipe for misunderstanding!
For example, when someone asks a question and I take some time to respond it doesn’t mean that I haven’t heard you or what’s come in one ear has literally gone out through the other one. It means that I’ve heard it but may not have totally computed it and am trying to analyse what you’re saying, before giving the most appropriate response.
So if you’re looking for information you don’t need to repeat the question unless I’ve asked you to. Or raise your voice, which will likely make me anxious or irritable. Autism can be primal after all.
Processing delays also mean that I can be slower in making decisions - for instance deciding what to have on trains, which can present its own version of familiar situations. After all, anyone who’s travelled with a certain intercity train operating company knows that in the past the on board staff in their café/shops there were notorious for 'prompting' people, autistic or not, who were taking time to choose into action. Note to said train operating company: it’s nice to see that you’ve cleaned up your act, somewhat.
Because when non-autistic people push too hard by doing stuff like bombarding our brains with questions or instructions that’s a recipe for our brains to, in effect, cold start on us.
This means that you can literally feel the brain shutting down on you which is something I’ve experienced and it isn’t pleasant believe me. Alternatively, in the rush to react I might overreach and either inadvertently give you the wrong information or do the wrong thing, which won’t help either of us!
Sure there are coping mechanisms that I can learn and do actually use. I now use mindfulness techniques especially around listening to focus on something I’m receiving information from. But I can’t always access them particularly when I’m tired. I can also prepare myself for a situation. However, there’s not always the time to do that and if something unexpected, whether positive or negative, catches me off guard then that can make me sluggish as I’m having to process unexpected information.
So, giving people like me that vital processing time is important as it allows us to understand, process, and respond to the information that we receive.
This can be through reasonable adjustments like extra time when doing written examinations or just being patient when encountering one of us. Do that and you’ll deal with a calmer, happier and sharper person on the spectrum who’s able to be effective when processing the information that we need to.
To help with processing time, I'll be calm and patient.
What will you do for autistic people?
My brother, Andrew, is 37. He was diagnosed with autism when he was about three and at six, around the time I was born, he started at The National Autistic Society's Radlett Lodge School.
Andrew’s autism is straight out of the textbook – it’s almost exactly what Leo Kanner was describing when he first expressed the condition. He sees and feels the world very differently to other people, and that means it can take some time for him to interpret and understand it.
When you are speaking with him, he needs time to listen to you and think about what you have said before he responds. It’s a two stage process for him – thinking about what he’s hearing and thinking about what he is going to say.
On the way in, information needs to be clear and if there are more than two options that can be difficult.
On the way out, Andrew mainly uses single words to say what he needs to say and it takes him some time to get his words out. He has to think very hard about how to say the word and then how he moves his mouth to make the sound he needs to.
He only learned to speak when he was 18. It was a big deal for him and for us. But it means it's never come naturally to him and you can see the concentration on his face when he's trying to form words. Where for most of us it's easy - the words tumble out - for him each syllable takes active thought. And it might take a few goes to get it right.
Oftentimes, he makes noises (we call it “derr-ing”) and our family has long since learned to know what the emotions behind those noises are. But it’s still a way we communicate.
It’s hard to think of a single time Andrew hasn't been given enough time to process information, because it happens all the time. In fact, even we are guilty of it despite the years and years of practice. We’ve all just been away together (photo of me, Andrew and Mickey above) and looking back I can think of quite a few times we didn’t get it right.
If there is a choice, Andrew will often look at you while he’s thinking. And it might take a few seconds, or longer. Most people assume that look means "can you ask me again?", but actually he's thinking about what you've asked. If you repeat it, he's got to think about it again from scratch.
I think the mistake that people often make about this is thinking about what we perceive to be the importance of the decision. A decision about what you want to do with the rest of your life should be way harder than whether you want ice cream or fruit for pudding, right? Well, consider a world where both of those present you with a problem: you're being asked to make a choice. It's a relative concept: which would you prefer?
And if either this/or that questions are difficult for Andrew, so are yes/no ones. There's a lot of societal expectation behind these. Would you like a drink? Would you like to go to the cinema? Would you like to go on holiday? Frankly they're all predicated on the fact that a positive answer - "yes" - is better. And I think Andrew has picked up on that. If you ask my brother a yes/no question, he will answer "yes". Unless you're asking him if he wants a cup of coffee - that's the only thing that gets an immediate "no"... We're very different in that respect.
If you want a serious answer, you need to give him more time and to ask the right question.
"What would you like to drink with dinner?" "What film would you like to see: A or B?" "What would you like to do on holiday?" And wait. That's the biggest thing. Don't repeat yourself straight away.
This feels like a slightly underwhelming example, but consider a dining table at a big family lunch. There are questions flying all over the place – not to mention everyone talking over each other. “Can you pass the salt?” “Would you like some gravy?” “Is that enough?” “Would you like a drink?” And then, if you’re helping yourself to things, you have to decide how much to take. I can tell Andrew finds this minefield of information difficult to traverse.
So how do we try and help? (Not that we always get it right).
We try to use visual cues as much as possible. If it's a choice, can you point to both the options, and pictures of them? If not, we try and use our hands: option one is the index finger, option two is the middle finger. Though Andrew still needs to take some time to process the decision, he can express it in a non-verbal way. Sometimes, he still signs.
If you load too many choices on Andrew, he'll become quite anxious. There's two possibilities then. He might reach for the answer that he thinks you want to hear ("yes") or he might get frustrated.
He finds unexpected things the most difficult to deal with: the internet going down, traffic jams and (slightly more left-field) rain on holiday. If something was working a moment ago, why isn’t it now? That additional stress makes it even harder for him to process what’s happening. It’s these things that lead to him having a meltdown.
Predictability and routine really help. And while, if I’m honest as a younger sibling I found this pretty annoying at times, it works and now I understand much better why and how it helps Andrew.
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Louise spent her entire life struggling to process information. She only recently found out she had autism and since her diagnosis things have changed. This is her account of her experience with information overload.
Or I’m sorry, my brain is buffering...
I quite recently became a member of the ‘diagnosed with ASD’ crowd. Before I was diagnosed, I didn’t even realise that I had a delay in processing information. Yet I often find it’s something which is catered for so rarely that I’m just as bad as everyone else at working out what I’ll need to help me with this buffering delay my mind has.
Take a recent visit to a physiotherapist. I knew before the appointment that there would be lots of talking about the difficult things which I’m struggling with physically. So I rehearsed what I wanted to say and wrote bullet-point reminders down on a piece of paper. I promptly forgot the piece of paper (that’ll go into my phone next time then). But the point is, I was as prepared as I could be for the appointment. I gave myself a fighting chance of expressing myself adequately. Adequately, not eloquently – let’s not aim too high.
During the appointment, the physio, who I’d disclosed my ASD to at the start, mentioned that she needed to do a physical exam. As usual, my face reacted way before my brain and in response she said some magic words:
‘Because of your processing delay, I can’t accept consent from you today – you haven’t had enough time to process what I’m asking of you. So make another appointment and come back and tell me your decision.’
It took me three hours to process how amazing those words were. It took me a week to decide that as uncomfortable as it would make me, the examination would tell her crucial information that she needed in order to make a decision about my future care.
What worries me is that that level of care and understanding is rare. Mostly when I disclose to NHS professionals, they instantly stop forcing eye contact. It’s as though the obvious physical discomfort is processed by them but the invisible stuff that I actually really struggle with, like making quick, on-the-spot decisions in a state of high anxiety which will affect my future health, is non-existent. Yet that’s the super important bit.
It’d help much more to slow down, to pause between important bits of information, and to check that I understand properly before moving on. I’m never going to have any questions then and there, because they don’t come until hours later. So either allowing me to email my questions later or handing me a leaflet which contains the ‘most asked questions’ answers with links to trusted sources of further information would be simply awesome.
None of these things cost anything, none of them require much training. But I think the difference they would make to ensuring ASD people’s health outcomes are better would be huge. We’re not simple, or slow, or stupid. We often have engineering brains that need to understand in detail what’s happening to us. We just need a little longer to join the dots. Help us join our own dots and everyone wins.
Give a minute. Ask one question as simply as you can, and just wait. If you still don't get a response, try rephrasing it or writing it down instead. How else can you help autistic people?
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