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Sara Gibbs @Sara_Rose_G
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Going to do a little thread on what it’s like to be on the autistic spectrum. Will add to it from time to time, mostly myth debunking, stuff you might not know & how to help / interact with autistic people in your life. #ActuallyAutistic
Did you know that a lot of autistic people have problems processing sensory input? Even leaving the house can be totally overwhelming as we are less tolerant of bright lights, strong smells, loud noises (or multiple noise sources), textures, motion etc. #ActuallyAutistic
If you’re meeting an autistic friend, try to meet somewhere quiet & calm. If you can make the effort to travel closer to us, that helps greatly as long journeys can be really difficult. On top of the sensory issues, we can be very anxious about planning. #ActuallyAutistic
Try to be ok with things that make our lives easier. Lower lighting helps. We might need to wear sunglasses indoors. If you want to converse with us, try not to have the TV / radio on in the background as we can get frazzled by multiple noise sources. #ActuallyAutistic
Routine is very important to autistic people & sometimes it’s hard to try new things / foods. Please don’t embarrass your autistic friend by pointing out their safe menu choices or insisting they try something / push themselves out of their comfort zone #ActuallyAutistic
I can’t count the number of times I’ve been close to tears because someone well meaning has put something in front of me I know I physically cannot make myself eat. Autistic people aren’t being fussy, it’s a huge & genuine challenge. #ActuallyAutistic
Aspergers / ASD types can be very good at appearing neurotypical. This is called masking. We are doing it to fit in & it’s a constant effort. Try not to be fooled by the mask to the point you forget we might need you to look out for us a bit more. #ActuallyAutistic
Some autistic people have special interests & can become obsessive about them / absorbed for hours while ignoring everything else, or become collectors / experts in a subject. One of my ‘special interests’ is politics, which is why I’m so damn tired #ActuallyAutistic
Aspies, despite the myth, do not lack empathy. We care deeply about others. Often too much to the point where we’ll go OTT trying to help. What we lack at times is the ability to imagine what it’s like to be neurotypical. That doesn’t mean we don’t feel or care #ActuallyAutistic
I, and many other (not all) aspies, cry - a LOT. If see anyone / anything remotely sad, if I feel any kind of emotion, good or bad, if someone else cries, if I’m tired... sometimes I’ll be crying & have to consciously work out what triggered it. #ActuallyAutistic
On the point of empathy, autistic people love to make others happy & will do whatever it takes. It can be very easy to take advantage of an autistic person’s generosity & willingness to help, so while we enjoy it (let us when we want to) try not to demand it #ActuallyAutistic
Autistic people are not antisocial but we struggle with several things socially, which I’ll cover in the next few tweets #ActuallyAutistic
Autistic people lose energy very quickly when socialising. Our struggles with sensory input mean we have to work harder to follow & process what people are saying, for a start. As I mentioned earlier, being mindful of environmental factors helps. #ActuallyAutistic
A lot of autistic people struggle with ‘normal’ social conventions, like eye contact & knowing what we’re supposed to say - especially if a conversation goes off script. We are often following a script. #ActuallyAutistic
Autistic people can be very intense. Many of us dislike small talk & prefer a deeper connection with fewer people & quiet, one-on-one time together #ActuallyAutistic
Even if a social interaction goes really well, autistic people can panic for ages afterwards. Sometimes from exhaustion, sometimes because we are blunt, honest oversharers & we replay all the things we said or did that might have been inappropriate #ActuallyAutistic
There are people I really like who I can’t think about without feeling sick with worry about a stupid thing I said in front of them or having shared too much the last time I saw them. This often stops me pursuing friendships #ActuallyAutistic
There can be a lot of sadness when we see other people socialising & enjoying things that we know we couldn’t enjoy if we tried. But we also know how to make wonderful homebody lives for ourselves #ActuallyAutistic
Autistic people ‘stim’. Stimming = a series of self soothing movements like leg jiggling, arm flapping, rocking, stroking our hair & lots more. There are also vocal stims. We often try to keep a lid on it in public to fit in #ActuallyAutistic
The last time I was at a stand up gig, the act on stage noticed me stimming (stroking my hair) & called me out saying I was distracting her / it looked like I was waving at her. I was mortified. I haven’t been to a public gig since. #ActuallyAutistic
Stimming is important because it helps us release energy & prevent / delay meltdowns (I’ll get to those) but my stims also reveal a lot about how I’m feeling & for people who know me well, it’s a vital part of my body language / communication #ActuallyAutistic
Meltdowns are possibly the hardest part of being autistic. They look like huge temper tantrums & can sometimes be seemingly triggered by something tiny but they’re a reaction to sensory overload. It’s our body’s way of clearing out & resetting #ActuallyAutistic
You don’t know humiliation until you’re the 30-year-old grown woman who can’t stop crying & rocking & flapping in front of someone who respected & liked you. Meltdowns are awful for the old self-esteem despite us having no control over them #ActuallyAutistic
If an #ActuallyAutistic person has a meltdown in front of you (it can also look violent / scary with head banging / shouting / throwing things) get them somewhere calm & private if you can. Remove stimuli. Do not tell them to calm down or shame them. Don’t make a big deal later.
If someone tells you they are #ActuallyAutistic don’t dismiss them / start aggressively challenging them on it because they haven’t shown you their struggle. Read this thread. I am not even a tiny percentage of the way through & look at how I hide the many ways I’m affected.
Many #ActuallyAutistic people prefer to say “I AM autistic”, rather than “I HAVE autism”. It is a neurological difference not something that is caught & cured, & many of us are proud of the special characteristics we have because we are autistic. We don’t have an illness.
One of the great things about being #ActuallyAutistic is we have a genuine childlike joy (and sometimes childlike interests / way of speaking). My husband bought me a Harry Potter wand & reader, I’ve barely put it down since because it makes me feel powerful.
We are also wonderful friends for spilling your guts to because we tend to be very open minded, not at all shocked by oversharing / strong emotion & very accepting of people as they are. #ActuallyAutistic
Aspies generally like to deal in facts & sometimes forget we’re supposed to gift wrap / sugar coat them. We can get very upset if we feel someone is being dishonest, even if they’re being kind & can get hung up on technical details that don’t matter to others. #ActuallyAutistic
I, and many other #ActuallyAutistic people, struggle with lying. I find it almost physically impossible to lie, my voice & face go strange & I feel an immediate need to confess. If you’re worried the aspie in your life is lying to you, they’re almost definitely not.
I’ve found that #ActuallyAutistic people have a very strong sense of fair play & struggle to understand when others don’t share it.
Before we’re diagnosed, #ActuallyAutistic people are often read as very dramatic or like we’re trying to draw attention to ourselves when that’s actually the last thing we want. A combo of expressing ourselves differently, feeling deeply & meltdowns / lots of issues.
A lot of (especially late diagnosed) #ActuallyAutistic people have internalised a lifetime of labels - dramatic, annoying, socially inept, inappropriate, rude / anti-social, spoiled, selfish etc. These are incredibly damaging & difficult to undo.
Some autistic people have serious problems sleeping through the night. I do not remember ever sleeping through an entire night. #ActuallyAutistic
Meltdowns are not always visible. Some autistic people go into shutdown / zone out or have non-verbal episodes. Again, try to adjust the environment so it’s quiet & calm & remove sensory or emotional triggers. #ActuallyAutistic
Some (not all) #ActuallyAutistic people struggle, to varying degrees, with demands of everyday life, like coping with bills, making appointments for themselves and so on. Everyday chores can also use up so much energy they become difficult to impossible.
Often, Aspies make great workers, but can find themselves quickly burning out / leaving jobs because the conditions aren’t right. The next few tweets will deal with a few things I think employers can do to help #ActuallyAutistic people succeed.
If it’s possible, allow #ActuallyAutistic employees to have flexible / home working as and when they need it, try to avoid open plan offices and plenty of breaks / time out if needed.
Be as clear and literal as you can in your instructions to an #ActuallyAutistic employee or colleague and take time to explain things in writing, as well as verbally, as it helps us process things in our own time.
Do not push #ActuallyAutistic employees to join in a social culture & be understanding if we sometimes say or do the ‘wrong’ thing. Don’t think of it as a neurotypical person being weird, think of it as an autistic person who is masking 24/7 getting tired.
Autism can come with some other commonly comorbid health conditions, both mental and physical. There are some I don’t have the experience to speak for, so if you’re an Aspie & have additional conditions, please do reply & I’ll RT. #ActuallyAutistic
A lot of #ActuallyAutistic people suffer from severe generalised anxiety, social anxiety & agoraphobia, often as a result of social & sensory difficulties.
Some #ActuallyAutistic people have depressive episodes. There is also a common thing called autistic burnout (not my infographic, but a helpful one). This means we can sometimes drop off the radar for a while & get very exhausted & down.
Some #ActuallyAutistic people, like me, develop OCD as a way of controlling & managing their environment. I have thousands of little rituals I try to do without people noticing & they are exhausting.
Late diagnosis can be very confusing. I went through a stage of overwhelming joy & relief followed by extreme grief, confusion & fear of interacting / being seen as ‘other’. I’m still processing it all. Newly diagnosed aspies will need to talk about it a lot #ActuallyAutistic
Because we can be very blunt, direct & not really pick up on things like other people’s perceptions or game playing, autistic people can often stumble into the middle of family or friend drama we don’t want without realising how we got there. #ActuallyAutistic
Not all aspies are trainspotters & programmers! And we’re not all good at maths. Some of us are much more creative & much less technical #ActuallyAutistic
Not all #ActuallyAutistic people are very quiet and reserved (although many are). Some, like me, are extremely chatty to the point of being self conscious about it.
Sometimes neurotypical friends don’t believe we are #ActuallyAutistic because they’ve ‘seen us cope’ in triggering environments. What they don’t see is how hard our feet are paddling underwater & how badly we crash afterwards. We force ourselves so we’re not labelled difficult.
Lots of #ActuallyAutistic people are very sensitive & easily moved by things we watch / hear. We have vivid imaginations & can get carried away listening to music, or have to look away during violent scenes on TV.
On the point of imagination, lots of aspies have rich inner worlds and love to daydream. Many of us can keep ourselves entertained for hours that way. #ActuallyAutistic
Someone’s just made the excellent point that most #ActuallyAutistic people do not like crowds. Walking down a crowded street or going anywhere with masses of people I personally feel completely bewildered, panicked & threatened.
Back to the subject of late diagnosis, a lot of #ActuallyAutistic people report losing their ability to mask as effectively after being diagnosed. It can be very hard to put that genie back in the bottle once you’ve realised consciously that’s what you’ve been doing.
A lot of #ActuallyAutistic people are big animal lovers. I am probably closer to my cats than most of the people in my life!
#ActuallyAutistic people can sometimes take things very literally. If you say you’ll call in five minutes, we will be waiting by the phone in exactly five minutes. This also leads us to answer rhetorical questions, or sometimes miss when we are being teased / wound up.
If you have an #ActuallyAutistic loved one, here are a few coping strategies (over the next few tweets) to help them with different situations.
I find it helpful to face the outside world with a backpack that prepares me for anything. Noise cancelling headphones or ear defenders, dark glasses & anything else I might need or which might comfort me, like little stim toys or soft fabrics #ActuallyAutistic
For non-verbal episodes it’s very helpful to have a system of pictures to point to, or even some sort of sign language (even if it’s a made up one) or signals between you & your #ActuallyAutistic loved one. Anything that helps us make ourselves understood without having to talk.
Sometimes during a meltdown we can yell things we don’t mean. Please try to resist engaging with it on an argumentative level, it will only prolong and exacerbate things. A thick skin is needed sometimes to deal with this but I promise we are worth it #ActuallyAutistic
#ActuallyAutistic people are often great at noticing patterns & outside-the-box stuff others don’t. That’s why we’re great assets in the workplace. In a writers’ room I’m often the one who notices themes in seemingly disparate ideas or plot holes & finds creative fixes.
A great point by @ZebraW2015 - changing a routine can be really hard for #ActuallyAutistic people. Switching between tasks, transitions, even what appears to be a small change, causes anxiety / panic & should be done with lots of prep & explanations (visual timetables can help).
Many #ActuallyAutistic people find things do not come out how they intended. My tone of voice is often misread, I might talk too loudly or softly, or a train of thought might lead me to say something clumsy when I meant to say something totally different.
Coming back to our vivid imaginations - it can be a blessing & a curse. I have had profoundly meaningful relationships that have played out entirely in my mind. That can make things very difficult & disappointing when reality intervenes! #ActuallyAutistic
It can take a lot for an #ActuallyAutistic person to socialise, so if we’re expecting to just see you, or people we already know, try not to impose an unexpected new person on us, or check if we’re up for socialising with someone new / warn us first.
If someone tells you they are #ActuallyAutistic don’t say “no you’re not” or “I know a *really* autistic person, you cope fine” or “you don’t look autistic”. Don’t demand we start listing all our issues to prove it. Just believe us or ask what that means / how to help.
I’ve had people almost shouting in my face that I can’t be #ActuallyAutistic , demanding to know why I “think” I am (I have a diagnosis from an expert) & forcing me to reveal deeply personal & painful behaviours just to appease them. It makes me feel like crap.
Sometimes names & faces can be a bit difficult for #ActuallyAustistic people to remember, especially if we see someone unexpectedly or out of context, so try not to take it personally if we take a bit longer to place you or have to be reminded of your name.
All #ActuallyAutistic people, no matter how successful we look, or how well we mask, have days, weeks or months like this (I mean not everyone has a cat for a pillow and taco cat pyjamas, but I highly recommend it)
Try to be careful about physical contact & movement around #ActuallyAustistic people. I personally like hugs, but some aspies really don’t, so ask first & be ok with a “no”. Also be careful of prodding / jostling & sudden movements. E.g. someone waving in my face distresses me.
We are all very different & not all stressed out by the same things, so it’s worth asking an #ActuallyAustistic person you spend a lot of time with if they mind sharing some of their sensory, physical & emotional triggers with you. It might be a long list.
Nobody’s expecting you to remember all of your aspie friend’s triggers, or to be able to do anything about all of them, but it makes it easier for #ActuallyAustistic people to speak up when they’re uncomfortable if they don’t have to explain it all for the first time on the spot.
Sometimes some #ActuallyAustistic people in social situations will find a safe person to focus on, usually someone they know a bit or who seems kind & empathetic. We might fixate on that person if we’re nervous (which means we might stare - sorry - it’s nice staring).
I want to talk for a minute about language around autism, because even in the #ActuallyAutistic community I haven’t found any real consensus.
Language around any minority group is always going to be thorny and difficult and the #ActuallyAutistic community is no exception.
Some people, myself included, like to say I *am* autistic, rather than I *have* autism. The idea being it’s not something you can just take off or cure, it’s something we are. However, others don’t want being #ActuallyAustistic to define them & prefer to say I *have*.
Some #ActuallyAutistic people see autism as a neurological difference, arguing that the world is built in favour of a neurotypical experience others see it as a disability & feel arguing otherwise undermines their legitimate need for help & access to services.
Another issue is diagnostic labels. When we say we are #ActuallyAustistic this conjures up an incorrect image for many people. Often people say “but I wouldn’t have known with you.” Problem is, to convey the meaning of our condition, the labels that exist aren’t helpful.
Asperger’s has been removed from many diagnostic manuals & partly because Hans Asperger was a most likely a Nazi, many #ActuallyAustistic people are understandably keen to distance themselves.
That leaves us with Autistic Spectrum Disorder or Autistic Spectrum Condition. This again brings up the controversy of disability vs neurological difference in the #ActuallyAutistic community. It’s a diagnostic label, but the word ‘disorder’ is problematic for some.
Some people find functioning labels offensive & find saying ‘high-functioning autistic’ undermines their own difficulties, or defines ‘functioning’ in neurotypical terms. Other #ActuallyAustistic people find it’s a helpful descriptor to make themselves understood.
These disagreements around language, ableism and how we define ourselves mean that any time we talk about being #ActuallyAustistic we risk offending someone. I think it’s important to be kind in interpreting language, everyone is learning & there’s no clear right or wrong.
Personally I don’t know where I fall. I believe being #ActuallyAutistic has shaped my character & it is an inextricable part of who I am. I believe it is a hindrance in some parts of every day life & a blessing in others. I don’t have very strong feelings about labels.
One thing I do feel strongly about is #ActuallyAustistic cure talk. I do feel I wouldn’t be who I am if I was not autistic & I am deeply concerned about the unsafe, traumatising & corrective ‘cures’ some parents are trying, which have been debunked anyway.
I think that’s one thing many #ActuallyAustistic people agree on. We do not wish to be cured of who we are & many of us are alarmed at the consequences of trying to do so.
Sometimes #ActuallyAustistic people can rely more heavily on neurotypical loved ones to help them with daily tasks. I often have people judgementally pointing out my husband does a lot for me in a sort of shaming way. Don’t comment on relationships between aspies & loved ones.
I’ve retweeted some stuff but it’s worth staying explicitly on this thread that vaccines do not cause autism. And even if they did, I’d hope people would rather have an -#ActuallyAutistic child than a dead one. And to protect immunocompromised kids who don’t have that choice.
It’s pretty depressing for #ActuallyAutistic people to hear that not only is there nonsense being peddled about autism ‘causes’ but that people would rather risk their child dying of a preventable illness than have a child like us. We deserve better, as do your kids.
Lots of #ActuallyAutistic people go undiagnosed because of incorrect beliefs about who can and can’t be autistic. Women and POC fly under the radar a lot. It’s also widely believed that autism presents differently in women, although that’s a huge generalisation.
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