Things you shouldn’t say to autistic people: You’re not THAT bad

There are some things you shouldn’t say when talking to autistic people. I’m sure people do have good intentions, they just don’t think things through or don’t realise the implications of what they’re saying. To keep my blog posts short and more accessible, I’m doing this as a series rather than one mega-long blog post.

I think that maybe a lot of people don’t know how to react when you tell them you’re autistic. Our society has always, loudly and clearly, sent out the message that being disabled is BAD. So the gut reaction so being told by your friend that they’re autistic is probably to downplay it or make them feel better about it.

So when faced with the news that “I’m autistic”, a lot of people will scramble to try and say something to cheer you up:

“Oh, you’re autistic? But you’re not THAT bad.”

Oh boy, let’s unpack that and think of some possible meanings.

It could be that they’re trying to say you’re not like those other “low functioning” autistic people. It’s a compliment, right? You’re almost like a normal person. You can hardly tell you’re autistic! The problem with this is that it’s assuming that autism is a bad thing and trying to distance you from it. Telling someone that the thing that explains their whole life and that permeates every single thing they do, is a BAD thing is not a compliment, no matter how it’s intended.

Of course, it’s possible that the intention behind “you’re not THAT bad” is NOT good. It could be that they’re trying to dismiss you. Maybe they’re saying “you’re making a fuss over nothing” or “everyone else manages, why can’t you?”. Being dismissed like this after trusting someone really hurts.

So if someone tells you that they’re autistic, please pause and think about your initial reaction. “You’re not THAT bad” might seem like a good thing to say, but think about how it will be received. Getting off to a good start is important for building good relationships between Autistic people and the autism community.

 

 

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Why I might never have a job

When I was little, I really wanted to be a zookeeper. My parents wanted me to be a vet though. I wasn’t that convinced, but went along with it because I was told I was clever and would go to university.

Then when I was a teenager, I inevitably wanted to be a rock star. That’s not a realistic goal for most us but I enjoyed performing and still do it today. But it never paid the bills.

I had a terrible time at secondary school and despite many people having high expectations of me, I was ejected from school after my GCSEs (which weren’t bad considering the hell I went through at school), did a BTec (which I LOVED) instead of A levels, then went to university and failed to complete a degree in what the Daily Mail would call a “Mickey Mouse” subject.

As a young adult, I drifted in and out of jobs; temporary office work, call centres, retail. I had no idea what I wanted to do. What was I good at? I had no real skills and was terrible at most jobs I tried.

Then came parenthood, and the pressure to have a career eased off a little. Staying home with the kids is seen as socially acceptable. I home educate my children which is a full time job in itself, and it’s one I love doing. I’m very involved in the local home ed community, running a couple of groups and attending several others. I get shit done.

I am my own boss. Maybe that’s the secret.

I’ve been fired from several jobs and quit plenty of others due to stress. I just don’t like being told what to do. Actually, that’s a huge understatement. If I’m given orders, I get this weird feeling. It’s not quite like panic. It’s as if someone flips a switch inside me that just says “NOPE”. The more I’m pushed, the more I resist. It’s like I can only do things that are my idea.

Maybe secondary school left me with a deep distrust of authority, a lack of ability to take any kind of criticism. I couldn’t handle a problem customer whether I was self employed or not. I’d end up yelling, or crying, or most likely both. To an outsider, it might just appear like I don’t fancy working. I’ve been called lazy and a golddigger. When I’ve tried to describe it to people I’m often brushed off with “lots of people hate their jobs”. The only time I’ve had a permanent, full-time job I got so ill that my doctor suspected a stomach ulcer. It was “just stress”.

I come from a background where you are your career, so not having one has always been a source of anxiety for me. I think this has been the hardest thing for me to cope with, and I still get bummed out about it on a regular basis, and often come up with schemes for starting a business that I will probably never be able to follow through on.

I wonder if many of the other autistic people who are unemployed feel the same way.  According to the NAS, only 32% of autistic people are in paid employment, with a mere 16% being employed full-time. While that makes me feel less alone, it doesn’t make me feel any better.

What is it about employment that makes it so hard for autistic people? I wish I knew the answer.

Stock images of autism are shite

I don’t know about you, but I could happily go the rest of my life without seeing this one image that seems to crop up on a weekly basis in autism articles:

autistic boy trapped

This image and others like it can sod off. That’s right. The good old “trapped autistic” trope is tired, old, inaccurate and damaging. We are NOT trapped in another world or inside ourselves or any of that stuff. We’re also not mysterious; you can just ask us stuff if you’re wondering.

little-boy-sitting-near-dark-260nw-1027260934

Another stock image that crops up a lot is the “sad autistic child”. A child sits alone, looking dejected. No reason is ever given for this, it’s just an image of a sad child. People are left to draw their own conclusions, but it really plays into the idea of autism being a tragedy.

The last one I see a lot of that I really hate is the one of the autistic child playing or sitting, not acknowledging the parent who looks worried or upset. They can’t connect to their child. It sucks. Everyone is sad.

All these are very negative, aren’t they? We live in a busy world and people often don’t read beyond the first couple of paragraphs or even the headline. So the photo accompanying the article is so important for getting the message across.
At the moment, that message seems to be “autism is terrible, look how miserable everyone is”. That needs to change.

Adult diagnosis feels: vindication

A lot of people are surprised that I got to the age of 33 before finding out I’m autistic. Some people are disbelieving, thinking that if I was really autistic then it would have been spotted earlier. Something was spotted, for sure; first of all shyness, scattiness, dreaminess, sensitivity. Then later on, rudeness, a bad attitude, lack of respect for authority. In the 90s, which was when I started really struggling, it was not easy to put all these together and figure out. So I was told anxiety, depression, reaction to parents’ divorce. But it never seemed to explain everything. I was so lost.

Later on, with more knowledge of autism, better access to information and the undying support of my husband, it happened; I was told I’m autistic. I’d been wondering about it for a couple of months having read Cynthia Kim’s blog and Tania Marshall’s expansive list of autistic traits, which was like reading my life story. Hearing it from someone else was what I personally needed to feel like it was actually true (self-identification is absolutely valid though, and should be respected).

After the initial shock wore off, it finally hit me that the feeling I’d always had about being different, the one everyone said I was imagining, was true. I felt a massive flood of “I told you so” and I wanted to tell EVERYONE. I’d spent so long hell-bent on revenge against those who had hurt me. I don’t mean violence, that would solve nothing; I mean revenge by being more successful in every way.

But of course, that type of success never happened. That type of success that depends on other people doing worse than you rarely does. My self esteem tumbled as I saw all the people that had been awful to me achieve things that I felt they didn’t deserve. This kind of thinking is so destructive. Finding out I’m autistic helped me to be kinder to myself about my lack of career achievements, and I wanted to tell the people that bullied me at school and college and all the teachers that were terrible to me to be more gentle towards me too. I desperately wanted to say I TOLD YOU SO. But would it really have helped? Would they have said, “shit, sorry, I will start being nice to you now.”? I doubt it.

It might have been a huge, life-changing revelation for me but the reality was that for everyone else, life just went on. Maybe some of the people from my past that I was so desperate to tell would not even remember me. So I held fire on telling everyone and told just a few close friends.

In time, the overwhelming feeling of righteous indignation faded into a much more healthy feeling of self-confidence in my new identity and I gradually became more open about being autistic.

I’m really glad I didn’t go on the warpath like I felt like I wanted to. The reason I tell people I’m autistic now comes from a positive, proud perspective; not one of vengeance and hate. I’m in a much better, healthier frame of mind.

If you’re feeling the way I felt right now, and you feel overwhelmed by it, TALK TO ME. It’s part of your autism journey but it doesn’t have to be the final step. Leave me a comment. You are not alone.

My first panic attack

You might have noticed that school is a recurring theme for me. I managed to get through 10 years of school without too much bother. Primary school was OK, and I had two teachers in particular that were supportive and inspiring. Things they taught me have stayed with me my whole life. These are the sort of teachers that I would love to see more of in the world.

Secondary school was less good. Too many people for a start. Too much noise, too much moving around, too many things to remember and organise. I started with lots of enthusiasm but I was quickly overwhelmed. Still, I stayed out of trouble, mostly. Until I got to my GCSE years (that’s age 14-16 for non-UK people).

Even though it was only 2 years out of the 12 I spent at school, those 2 years have been the biggest influence over my whole life. And NOT in a good way. The more pressure they piled on, the less work I did. I was EXHAUSTED and struggling but they interpreted this as apathy and laziness. I think they were more concerned with their reputation and their place on the league tables than they were about pupil wellbeing.

I was constantly in trouble and being asked to visit this one teacher’s office. She made it pretty clear that she didn’t like me and thought I was a lost cause. By this point I think they just wanted me to pass my exams and then leave.

One particular visit sticks in my mind very clearly, even though it was 20 years ago. I’d been pulled into her office to produce some work, which more than likely I hadn’t done. I remember taking my folder out of my bag and suddenly I was gasping for breath. I was shaking and wheezing and wondering what the fuck was happening to me. I remember thinking I must have suddenly developed asthma. Some of my friends had it and I’d seen them having asthma attacks. Why was I suddenly having one when I’d never had asthma before?

This teacher didn’t think it was an asthma attack. She repeatedly yelled at me, “What have you taken? What have you taken?”. She thought I was on drugs. I dunno if she was pissed off that I might damage the school’s reputation by ODing on school property or whether she was genuinely concerned for my safety. I was trying to tell her I hadn’t taken anything but I don’t know if I was able to.

I can’t remember what happened immediately after that, but I must have calmed down and been able to show her my work, or tell her it wasn’t done. Either way, no mention of it was ever made again. I don’t think I even told my mum when I got home.

A couple of years later I found out about panic attacks and realised that that’s what had happened to me. I was only 15 or 16 at the time so I don’t know what the average person knew about anxiety and panic attacks, so maybe it wasn’t the teacher’s fault that she didn’t know. I don’t know why her immediate reaction was drugs. I might have been in a lot of trouble at school but I wasn’t into drugs.

I used to be really angry that I’d been treated this way. I thought it must have been obvious that I was struggling, but maybe it wasn’t. Finding out that I’m autistic meant that I’ve been able to look at incidents like this from my childhood and have a bit more understanding about why I struggled with some things.

I don’t know if I can forgive this particular teacher but I can understand that she didn’t have the same view of things that I did.  I can’t change the past, I can only draw a line under it and move on. So consider this post my line.

Autism terminology: Asperger’s

This is one of part of a series of posts about the language we use to describe autism and autistic life. Everyone has different feelings about which words are used and I’m not going to tell you which terms you should and shouldn’t be using; just that it’s important to be mindful of what language we use and the impact it has.

When I had my assessment, I heard the word “Asperger’s” a lot. It’s what was on my report and it was what I was told I was. When I first told people about my assessment, I told them “I have Asperger’s”.

But the more I’ve learnt from other autistic people, the less I’ve used that term. Here’s why.

When I first heard about functioning labels, like most of society I didn’t see the harm in them. But I learnt from the Autistic community about the harm that comes in making assumptions about someone’s abilities based on what is actually a really woolly, meaningless term. I heard stories of people being written off for being “low functioning” and being denied support because they were “high functioning” (on occasions this can happen to the same person!).

So I realised that functioning labels were bad. But then I thought; isn’t defining Asperger’s as a separate thing just another way of using functioning labels?

I’ve met such a wonderful and varied bunch of people in the Autistic community (I say “met”, but I haven’t met nearly enough of you in real life). Some of them were identified as what was known as “classic autism” and some were identified as “Asperger’s”. But if you’d asked me to separate them out into these categories, I wouldn’t be able to. There is just so much common ground between both groups that a separate category seems pointless.

Reading up on the diagnostic differences wasn’t all that helpful either. The only/main difference seems to be that autism includes a speech delay in childhood. When you’re in a room full of autistic adults, the age at which they began to speak doesn’t seem like a defining factor that should separate us. Some websites say that Asperger’s usually includes a normal or higher level of intelligence and that autism can include lower IQ and learning disabilities. But isn’t a learning disability a separate thing from autism? I’ve met plenty of intelligent people who were identified as autistic rather than Asperger’s.

In fact, the idea that Asperger’s people are “more intelligent” has probably contributed to the rise of Aspie supremacy, which is a real thing and is as awful as it sounds. Some people believe Asperger’s to be “the next step in human evolution” (even though evolution doesn’t really work like that). They believe themselves to be more valuable than “lower functioning” autistic people and strive to set themselves apart from other autistic people. The value of someone’s existence is judged by what they can do rather than just being based on the fact that they’re a human person.

Added to all that, the recent media coverage about Hans Asperger’s actions during WW2 have cast a huge shadow over the Asperger’s identity. Asperger had been seen as a hero in the community, an early proponent of the idea of neurodiversity. There were stories that he saved autistic children from death by telling the Nazis that their autistic intelligence may make them useful codebreakers. Now, we are faced with the new information (although there have been rumours for ages) that Asperger sent disabled children to their deaths and supported the idea of “racial hygiene”. Many people who identify as “aspies” are re-considering what that term means to them now.

Even before the reports on Asperger’s support of the Nazi regime, the term “Asperger’s” didn’t sit right with me. We, in the Autistic community, have more in common than what divides us. Even though the number of people identified as autistic is growing as people learn more about why they are the way they are, we are still a marginalised minority group. Dividing ourselves up further seems like an unhelpful thing to do.

What is spoon theory?

I often talk about not having the spoons or needing to replenish my spoon supply and you’d totally be forgiven for wondering what the flying fuck I’m on about.

In this case, I am talking about figurative spoons rather than literal spoons. My kitchen has plenty of literal spoons and if I run out of those then I can fish the tea bag out of my mug with a fork. I’m not picky.

Christine Miserandino first described “spoon theory” in 2003 to explain to her friend what life was like dealing with lupus. A “spoon” in this case is a unit of energy. Any tasks or activities that a person does during their day uses up a certain number of “spoons”; anything from having breakfast to attending a meeting at work. Non-disabled people don’t need to think too much about their spoon levels; the world is structured in their favour. Disabled people or people with illnesses know they have a limited amount of energy, and that even basic self care tasks like washing and getting dressed can use up spoons.

So we have to plan ahead to make sure we don’t run out of spoons before the day is done, and we have to take the time to replenish our spoon level. This is done in many different ways; sleeping, spending time alone, doing a relaxing activity like watching TV, spending time enjoying hobbies, whatever. It’s different for each person. Finding out what replenishes your spoons the quickest is a good idea.

Spoon theory applied to autism means that while non-autistic people might be able to do some things without thinking about them, or even find them relaxing and enjoyable, for autistic people these things might take up valuable energy that they might need for something else. My personal spoon-suckers are any kind of pressure or deadline that is dictated by someone else, conversations with anyone who isn’t a close friend or immediate family, shopping (sensory fuck-that-shit), or any kind of social activity where I’m expected to act a certain way, like weddings or dinner parties. Non-autistic people might find these things enjoyable or relaxing, but I have to plan for these things so that I have the energy to take care of myself and my family, and have time afterwards to recuperate. That, or I just avoid them as much as possible.

If you’ve used up all your spoons then all you have the energy to do is fall asleep in bed, or maybe even on the sofa because sometimes even moving to another room is too much. No speaking or reading or dinner or taking your make up off or brushing your teeth. Just crawl into bed and pass out.

Bloody hell, even PLANNING your day around how many spoons you have takes up spoons. Planning can be hard because you never know what’s going to happen to wreck your plans. Sudden changes of plan use up a lot of spoons.

It can take a while to figure out how many spoons you have (it can vary from day to day) and what to spend them on. So if someone tells you they can’t do something that seems like a small task, maybe they’re out of spoons and they need some understanding. I realise that it can look like laziness to people who don’t realise that they have way more spoons than everyone else but I hope that spoon theory will help those people to understand that for some of us, even the tiniest task is impossible if we don’t have enough spoons.

 

Adult diagnosis feels: sadness

NOTE: Although I have titled this series “Adult diagnosis feels”, I much prefer the term “identified” to “diagnosed”. This is because “diagnosed” is a medical term and I do not believe autism to be a medical problem. I’ve simply used it in the title because more people understand what it means, but I will use the terms “identified” and “identification” in the main text.

When someone asks me what it’s like to be autistic, my first reaction is a memory. I don’t know whether it’s a specific memory or a compilation of various memories. It plays in my head like a video. There are no words, just feelings. I’m in the school playground and I’m playing with other children. Someone has just made a comment or a joke and on my face is a wide smile, but there is uncertainty in my eyes. I’m smiling because everyone else is, but my brain is never quite sure if I’m doing the right thing. Nevertheless, I am faking joining in while my brain works on full speed trying to get in sync with everyone else.

That’s kind of sad, isn’t it? I’ve felt this exact feeling so many times in my life. I don’t know how to describe it really, other than that it’s a bit sad.

When I found out that I’m autistic, I felt like this a lot for the first few weeks. I’d always thought that maybe there was some big secret that I needed to figure out and then I’d be able to fit in. Being autistic meant that it was never going to happen. I was always going to be on the fringes.

If you’ve just found out you’re autistic and you’re feeling like this too, then I want to tell you that this is NORMAL and PERFECTLY FINE. I also want to tell you that soon this feeling can fade into the background. That big secret you were looking for IS out there, it’s just not what you thought it was. The secret is self-acceptance. It sounds easy, but it takes a little work.

The first thing you need to do it get involved in the Autistic community. I don’t mean parent-run or charity-run groups, I mean Autistic run groups. There are plenty of us out there. You won’t find a secret way to fit in to society, but what you’ll find is a group of people accepting the fact that they don’t fit in, and celebrating their own perfect autistic selves.

Life might not work out the way you thought it would, but that doesn’t have to be a sad thing.

Adult diagnosis feels: self-doubt

NOTE: Although I have titled this series “Adult diagnosis feels”, I much prefer the term “identified” to “diagnosed”. This is because “diagnosed” is a medical term and I do not believe autism to be a medical problem. I’ve simply used it in the title because more people understand what it means, but I will use the terms “identified” and “identification” in the main text.

It’s not easy going through life knowing you are different but being told you are just like everyone else (subtext: and they all get along just fine, so why can’t you?).

So after years of believing that they were right, I was just like everyone else and it was purely a character flaw that I couldn’t get my shit together, I was finally told that HOLY SHIT, there is actually a reason why I am the way I am.

At first I felt totally relieved (after the shock wore off), but then there was this terror that this clear explanation that I’d been given for my whole life would suddenly be taken away again. It felt fragile for ages to say “I’m autistic” in case someone popped up and said a mistake had been made and I was actually just the miserable failure that I always thought I was.

I still feel like this sometimes, but not as much as I did. I used to worry a lot about joining autistic groups in case I wasn’t “autistic enough”, as if you can be an amount of autistic (you either are or you aren’t). I was worried that because my assessment wasn’t a clinical one that it wouldn’t count. I was worried that being married with children would somehow make me seem not autistic. Basically, I was worried that everyone would think I was taking the piss.

But let me tell you’ve what I’ve learnt from the autistic community: Self-identification (or self-diagnosis) is totally valid. There is a vanishingly small amount of people that won’t accept self-identification; if you self-identify you will find 100 times more support than you will opposition, because so many people in the Autistic community know what it’s like to struggle through a system that believes only young white boys can be autistic. They know what it’s like to not be covered by insurance. They know what it’s like to be sneered at by a GP who just says “depression” and prescribes meds. They know what it’s like to be called “special snowflakes” by people who don’t like the rich variety of humanity. If you have self-identified as autistic then you WILL find support in the Autistic community.

I’m not going to tell you that the disbelief you feel is silly and that you should snap out of it. Your feelings are valid. But I want to reassure you that self-identifying is fine, feeling unsure that you’re “autistic enough” is normal, and you will find something in common with at least one person in the Autistic community.

Outside of the Autistic community there is sadly a lot more disbelief and a lot less understanding. People may think that you can’t be autistic because you don’t fit into their preconceived idea of what an autistic person is (£20 says it’s an 8 year old white boy who loves trains and maths). If you’ve been masking then people may not even believe that you’ve been struggling. Deciding whether or not to “come aut” as autistic is a personal decision for everyone. Personally I’ve had mostly good reactions, or at least ones with good intentions.

I hated the uncertainty and self-doubt I felt after my assessment. But personal disbelief can be worked on by engaging with the autistic community and finding people who you have common ground with. Finding out that there are other autistic people who don’t conform to the autistic stereotype that we’ve all been taught might help you to feel more comfortable with the idea that you’re autistic and no one can take that away.

The Empathy Quotient test

Time for another internet test! Today I’ll be taking the Empathy Quotient test, which sorts the normal population from the dead-eyed, soulless, unfeeling autistics. Ok, not really. I’ll rant about the empathy thing another time because that’s going to need a whole blog post. Here is the blurb about the test:

The Empathy Quotient (EQ) is a 60-item questionnaire (there is also a shorter, 40-item version) designed to measure empathy in adults. The test was developed by Simon Baron-Cohen at ARC (the Autism Research Centre) at the University of Cambridge.

Clinically, the empathy measurements provided by the EQ are used by mental health professionals in assessing the level of social impairment in certain disorders like Autism. However, since levels of empathy vary significantly between individuals, even between those without any mental health disorders, it is also suitable for use as a casual measure of temperamental empathy by and for the general population.

I’m not going to comment on every question because there are 60 of them and some of them are more boring than others. So here are the edited highlights of me taking the test.


When I was a child, I enjoyed cutting up worms to see what would happen.

What the fuck. I don’t get this question at all. Are they trying to weed out potential serial killers? Anyway, I never cut up worms, but I had a pet one once. He was called Sidney.

It is hard for me to see why some things upset people so much.

This one stumped me a bit; I couldn’t decide between slightly agree and slightly disagree. I might not understand WHY someone is so upset by something, but surely the most important thing is that they ARE upset? There’s no sense telling someone they shouldn’t be upset when they obviously are. Sure, I may not have reacted the same way but I understand what it’s LIKE to be upset so I try to help anyway.

I like to do things on the spur of the moment.

Too bad there isn’t a “FUCK NO” option for this question.

I am good at predicting how someone will feel.

This is one that I spent a long time discussing with my CBT therapist before I was identified as autistic. I don’t understand this question really, because it’s too vague. NO ONE can predict the future. There are way too many variables. Someone might react to something in a completely different way if, say, they had just lost a family member than they would if they were having a brilliant day. And if you don’t have this information then you can’t possibly predict how someone will feel about something. WAY TOO MANY VARIABLES. Maybe NTs don’t think about this so that’s why they think they can predict how people will feel?

There is a possibility that I’m overthinking this, but really this question needs rephrasing or explaining. For now I’m going for ‘strongly disagree’ because I’m not Mystic sodding Meg.

I am quick to spot when someone in a group is feeling awkward or uncomfortable.

I mean, it’s usually me.

Friends usually talk to me about their problems as they say that I am very understanding.

Ok, no one has ever actually said to me that I’m ‘understanding’, but often friends have come to me to talk about their problems and then told me at the end that I’m a good listener and really helpful? I don’t know why. When people tell me their problems I start trying to figure out how to solve them. I’m not the sort of person that thinks talking about a problem helps in any way. That’s why talking therapy was so useless for me; the only way to solve a problem is to solve it. Maybe sometimes people want to hear resolutions to their problems and that’s why they talk to me about it. I dunno.

I can tune into how someone else feels rapidly and intuitively.

Isn’t this mind-reading? You can think you know what someone is feeling, but you can’t KNOW know unless you ask them, and even then you can’t be certain that they are telling the truth. Too many variables!

I don’t consciously work out the rules of social situations.

They’re always bloody changing anyway.

I am good at predicting what someone will do.

STOP PRETENDING YOU CAN MIND-READ, ALLISTICS.

Right then! The test is over and the results are in.

Your Empathy Quotient score was 28 out of a possible 80.

Scores of 30 or less indicate a lack of empathy common in people with Autism or Asperger’s Syndrome.

Higher scores indicate greater levels of empathy.


A lack of empathy common in people with Autism or Asperger’s Syndrome? UUUUURRRRRGGGHHHH. I will definitely do another post about the empathy thing.

 Let me know your score in the comments!