Infographic: Social anxiety and autism

Guides, How to, Infographic, lists

Social anxiety disorder (or social phobia) is a common condition in autistic people. Some studies estimate its prevalence among the autistic population to be as high as 50%! A concerning statistic, given that the estimated prevalence for the non-autistic population is 7-13%.

While social anxiety doesn’t typically have the same potentially fatal results as other psychological disorders, it can stop people from living their lives. A key symptom of social anxiety disorder is avoidance – going to great lengths to avoid social situations.

This means many people with social anxiety become isolated from their friends and family and find it difficult to go to work or get a job. Some people don’t leave their house for weeks, because they’re afraid of being around other people.

For these reasons, it’s important to keep social anxiety under control when you can. There’s no known ‘cure’ for social anxiety, but it can be managed through various strategies. For a handy infographic on my favourite ways to combat my own social anxiety, scroll to the bottom!

Is social anxiety linked to autism?

Social anxiety and autism are two different conditions affecting the brain, with a high comorbidity rate. Social anxiety disorder is much more common in the autistic community than in the neurotypical community. 

We still don’t know exactly why this is, but many researchers have theorised it could stem from a mix of having an autistic brain, and living as an autistic person. Basically, a combination of nature and nurture (like most psychological disorders).

For many of us, we face a LOT of awkward social situations during our childhoods, not to mention outright rejection. As this builds up over time, we internalise a fear of social interaction, developing social phobia.

My experience of social anxiety was pretty gross. I felt trapped by my own brain, limiting myself to the few people and places I knew best. I remember feeling literally paralysed by my own fears. So yeah, could have been better.

What’s the difference between social anxiety and autism?

It’s pretty hard to differentiate social anxiety and autism – both are characterised by a difficulty interacting with other people. And considering an estimated half of all autistic people also have social anxiety disorder, knowing where one ends and the other begins is a tricky task.

However, autism is a wide collection of traits, not just social awkwardness. Sensory processing issues, cognitive functioning, and other areas of life are affected. Social anxiety, on the other hand, only affects social skills.

There are other less obvious differences between the two. People with social anxiety often want to socialise with others, but are too anxious to do so. Autistic people, especially children, are more likely to have little interest in socialising in the first place.

I actually noticed some differences through my own experience of both disorders (fun, I know). While many people with social anxiety disorder report a lower level of anxiety when talking to fewer people, I noticed the opposite.

In large groups I found it easier to fit in, to sit back and observe the conversation. In smaller groups this became harder. I had to talk a little here and there, though it was still doable.

But my worst nightmare? One-on-one conversations. All I have to rely on is my own set of poor social skills, and my even worse ability to hold a conversation.

You can imagine my surprise when online social anxiety forums ranted about how much they despised big groups. It seemed one-on-one conversations were the lesser of two evils to everyone except myself. 

Now, I understand that my autism was what made me different, but back then it was confusing. I had mistaken my autism for social anxiety. This won’t be the case for everyone, as autism is a wide and varied spectrum, but this difference was one of the best ways I could tell I was neurodivergent.

Coping skills for social anxiety

  1. Reward yourself

Facing social anxiety can feel like an endless battle. It’s important to take the time out to celebrate small victories. For example, if you talked to a stranger or went to a party, reward yourself with your favourite food or a new book.

Giving yourself a reward for facing situations that trigger anxiety can be a great way to calm your body. You’ll have something to look forward to after the event, and no victory is too small to celebrate!

  1. Exposure therapy

Exposure therapy is based on the idea that we get less scared of something as we experience it more. Through talking to people, your brain learns that it’s a safe thing to do, meaning you’ll be less scared in future.

If you find that exposure therapy isn’t doing much to help you, don’t worry! It won’t work for everyone. Never push yourself too hard and risk a burnout or meltdown. Take it one step at a time.

  1. Get help

If you’re really struggling with anxiety, it’s a good idea to talk to a professional. Counsellors and therapists can equip you with ways to manage your anxiety during social interaction. They’ll also help you question any negative thoughts.

Plus, by seeing a mental health professional, you’re also practising a form of social interaction! Seeking therapy can be a huge step for people with social anxiety. It provides you with regular opportunities to practise social skills in a safe, supportive environment.

  1. Use relaxation strategies

There are calming strategies you can use when you feel anxious. Breathing techniques, mindfulness, and social anxiety affirmations are just a few. Next time you feel nervous, try taking some deep breaths and thinking good things about yourself.

You can find lots of affirmations for anxiety online, but they aren’t always helpful for autistic people. Some autism-friendly social anxiety affirmations I like to use include:

  • There is nothing wrong with me.
  • I have interesting things to say.
  • I’m a friendly person.
  • People enjoy being around me.
  • I am calm and relaxed.
  • It doesn’t matter if I make a mistake.
  1. Prepare

Before you take part in a conversation or social event, it’s good to prepare a mental plan. You could think up some conversation topics to use, or relaxation techniques that can help you.

Being prepared can help you relax before, and during, a social event. If you feel as if something has gone wrong, you can refer back to your mental plan and choose a phrase or technique that can calm you down.

  1. Avoid alcohol

Alcohol calms you down and reduces insecurity in the short term. But in the long term, it can make you more anxious. You may also say or do things you regret. While it can be tempting, alcohol is not a good coping strategy for social anxiety disorder.

Are autism rates increasing?

Questions, Science

Autism has become somewhat of a hot topic in recent years. Since the fraudulent 1998 Lancet MMR-autism link, psychologists and parents alike have been up in arms about what could be causing this neurodivergent boom.

Are autism diagnoses on the rise? It depends on who you ask. One UK study indicates that after a sharp rise in the 1990s, diagnoses plateaued once we entered the 21st century. However, most other countries have reported a significant rise in cases.

While confusing, the wide and fluctuating range of autism estimates reflects several issues in the way autism has been diagnosed. Why have autism rates increased? Is it because more people are autistic? Or is it for some other reason? 

Autism as a condition is, after all, hard for us to understand. Traits vary widely depending on age and gender, and many autistic people struggle with distinguishing autistic traits from their own personality. What parts of me are me, and what parts are autism?

And as if that wasn’t enough, many autistic people go to great lengths to hide their disorder. Camouflaging, or “masking” autistic traits is a common practice, employed to fit in to the rest of society.

So let’s go with studies which claim that autism rates are increasing. What does this mean? What are the causes? Through today’s post, I’m looking into some potential reasons behind this increase – the good, the bad, and the anti-vax.

A grab quote reading: "Many autistic people deemed "high-functioning" go their whole lives without a formal diagnosis." The words are navy and set on a pink background with daisies and leaves.

“Under the radar”: more cases, or more diagnoses?

Nowadays, the estimated number of autistic people in the UK is around 700,000. Though most experts, not to mention the autistic community, estimate that the true figure is much higher. Many autistic people deemed “high-functioning” go their whole lives without a formal diagnosis.

As professionals, and society in general, gain a deeper understanding of what autism looks like, more and more autistic people are seeking – and getting – a diagnosis. People who previously flew under the radar. These improved diagnostic practices are a good reason as to why autism rates are increasing.

Women on the spectrum

This “under the radar” phenomenon is particularly common in women and girls. Females on the spectrum tend to mask their autistic traits more so than males, perhaps due to an increased pressure to fit in. Because of this, autistic females are diagnosed later in life than their male counterparts.

Some girls and women with Asperger’s syndrome, and adults of considerable intellectual ability, can be more difficult to diagnose due to an ability to camouflage their difficulties.

– Prof. Tony Attwood

But in recent years, the diagnosis of autistic women has improved, and by a lot. When Hans Asperger first described what we now know as the (now defunct) Asperger’s syndrome, he hypothesised that it was only found in males.

Since then, the estimated ratio of autistic males to females continues to be updated, seemingly on a regular basis, as psychologists begin to understand just how well autistic women hide themselves. The most recent estimate is 3:1, though some believe it may be as high as 2:1.

And so more women and girls have been adding to worldwide autism figures. As we begin to understand the many subtle ways autism presents in both men and women, rates have indeed been rising.

This doesn’t mean that more people are developing autism, just that more people who already had it are being identified. Someone who had autism, say, 100 years ago, may have gone their whole life never knowing what was different about them.

Trust me when I say: I do not envy said person.

So yes, maybe rates are increasing. Maybe they’re increasing by an alarming amount. But this isn’t necessarily a bad thing. 

After all, someone with undiagnosed measles still has measles, a diagnosis won’t change this fact. If anything, a diagnosis will improve their standard of living. The same is true of autism.

A grab quote reading: "Men and women have found an identity they would never have come across otherwise, in the media they consume." The words are navy and set on a lilac background with daisies and leaves.

Better awareness

Autism has been steadily shifting into the public eye over the past couple of decades. Both fiction and non-fiction books, films, and TV have shown portrayals of autistic people – some accurate, some…less so.

Over time, more autistic people have begun to see themselves in these portrayals. Men and women have found an identity they would never have come across otherwise, in the media they consume.

It’s this increased awareness that is driving more people to seek advice, and potentially a diagnosis. And even if they themselves aren’t that aware of autism, the people around them may be.

Parents, teachers, friends, therapists, might be able to recognise autistic traits and encourage a diagnosis. The public’s awareness of autism is still far from adequate, but it’s been improving for a while, and I hope it continues to do so.

Another potential cause

While improved screenings and awareness are generally accepted as the biggest reasons for rising autism rates, there may be other factors involved.

Parents’ ages

For example, research has shown that the age of someone’s parents can affect the chances that they will develop autism. Having older parents is associated with a higher likelihood of autism. 

This has implications for a society where parents are getting older, as many of us are choosing our careers over starting a family. The rising average age of new parents could mean a rising number of autistic children.

So…do vaccines cause autism?

The increased prevalence of autism has long been attributed to vaccines – particularly the measles, mumps, and rubella (MMR) vaccine. All the recent hubbub around vaccines, and pretty much the entire anti-vax movement can be attributed to one research paper.

In 1998, Andrew Wakefield, along with 11 other researchers, published a paper in the academic journal The Lancet. It claimed there was a link between the MMR vaccine and several health conditions, including pervasive developmental disorder, now known as autism.

Since then, this claim has been debunked several times, and Andrew Wakefield has since been struck off the UK medical register. In fact, there have been multiple studies demonstrating the opposite – vaccines do not cause autism.

A grab quote reading: "There have been multiple studies demonstrating the opposite - vaccines do not cause autism." The words are navy and set on a pink background with daisies and leaves.

Did this do anything to stem the flow of misinformation? Barely. The anti-vax movement is still thriving, and the damage of one fraudulent study is starting to seem irreversible.

But, as fun as it would be to develop some kind of levelled-up super-autism from my Covid vaccine this year, I doubt I have that to look forward to. There is no evidence linking vaccines to an increased chance of developing autism.

So yes, autism is getting more and more prevalent, and that’s okay! It doesn’t necessarily mean more people are autistic, just that more autistic people are being seen and heard. More of us are feeling validated. We’ve existed in society for millenia, and we’re starting to find our place. 🙂

***

TL;DR: The rate of autism diagnoses is increasing, but likely not the rate of autism prevalence. This is due to an increase in awareness around autism, better diagnostic practises, and (potentially) older parents. One thing that’s not responsible? VACCINES.

Do you think rates of autism are increasing? Got your own ideas as to why this might be? Let me know down in the comments below! And if you’re looking for more posts on autism and women, why not check out the rest of my blog here?

10 things I changed after my autism diagnosis

Guides, lists, Personal

It’s no secret that autistic women are typically diagnosed much later than autistic men. In fact, many of us were only diagnosed in adulthood. Prejudice and a lack of understanding around autism means professionals struggle to notice traits in women.

Okay, so maybe I didn’t notice them either. To be fair, I was pretty deep in denial. So deep, in fact, that I spent my entire early life convincing myself I was someone I wasn’t. Once I learned I was autistic, my outlook on life shifted. I started making changes, ones that would help me feel more comfortable in my own skin.

Whether they helped me seem more or less human to other people, these changes made me realise that I spent too long forcing myself into a mould I was never supposed to fit into. As soon as I started accepting myself for who I am, things looked a little brighter.

  1. I practised mindfulness

Mindfulness is great. I’m not saying it’s a miracle cure-all, but it’s pretty darn close. Even a few minutes a day have been shown to decrease stress, improve cognition, and soothe most common mental illnesses.

Because a lot of these conditions, especially stress and anxiety, are super comorbid with ASD, I found it was a good idea to take a little time out every day for meditation. 

Apps like Headspace and Calm are amazing for guided meditation. You can choose long or short sessions, and they even have recorded sessions tailored to a specific problem or difficulty in our lives. 

My personal favourite is the Mindful in Minutes podcast on Spotify. Each session is 10-20 minutes, so I schedule one every day. It’s also my go-to whenever I’m struggling to sleep.

  1. I learned about autism

You know how every autistic person you know seems to have had ASD as a special interest at some point? Yeahhhh…same. It’s just so fascinating! I think I learned more about it in the 2 months post-diagnosis than most people do in their lives.

And it was so so helpful. Knowledge is power, and this is no exception. Learning about autism in adults means learning about ways you can make your life more comfortable. It means learning about how to treat yourself, how to pay attention to your specific needs, and when to hit the brakes.

Plus, when I first started reading about the experiences of other autistic women, I cried. A LOT. It’s so moving to know you’re not the only one. There’s millions of women out there who feel like you. And I’m one of them!! 🙂

  1. I told people

Finally! I had a reason why I was so weird. Oh man, it was exciting. So thrilling, I started telling everyone I knew. And sure, they weren’t as excited as me, but the polite smiles felt just as nice.

I know this isn’t an ideal choice, or even an option for lots of us, but it sure felt nice to explain away all my quirks with autism. Telling people you’re autistic can negatively impact your relationships, so if it’s not for you, don’t feel pressured to do it. I get it, being authentically yourself in a world designed against you is hard.

But now, everyone I interact with in my daily life knows I’m autistic. It means I can chill a little, I don’t have to work as much to keep up the NT facade. If everyone knows, why try so hard to be something I’m not?

  1. I stopped making eye contact

I spent countless hours trying to get myself to improve my eye contact. I read a whole bunch on social anxiety and exposure therapy, and treated every conversation like a staring contest. It was not fun, I hated it.

So I stopped. Luckily for us, a dislike of eye contact is one of the more well-known autistic traits, so I think people are more understanding when I say I don’t like it. Now I enjoy conversations a lot more, I’m a better listener, and I’m more comfortable around other people.

  1. I stopped talking to people I didn’t want to talk to

I have to give younger me some credit – I was nothing if not determined. I saw everyone making friends and being all social, and convinced myself that if they can do it, so can I. Thus followed years of forcing myself to talk to people in the name of making friends.

This approach worked as well as you’d expect. The friends I made came naturally, when I felt relaxed. Not when I was on the verge of tears. 

Today’s advice: don’t force social interaction. It’s a lot nicer when you actually want to be around someone, both for them and for you. 

  1. I made accommodations at work and home

One of the biggest obstacles I had to overcome was realising that I actually had a disability. Me? Disabled? But I went to Cambridge! I have friends! How could I have a disability? 

Newsflash – you do. And you need some accommodations to make sure you don’t end up going off the deep end.

Sooooo I started finding ways I could help myself out a little in my day-to-day life. I started taking on assignments one at a time, working on each one until it was finished. This worked a lot better than mashing a little bit of every assignment into each day, until it resembled a brown lump of academic Play-Doh.

At work, I let someone know if I need some time out, and make other little adjustments here and there when I need them. If you’re able, think about the changes your workplace could make to accommodate you, and ask someone about implementing them.

  1. I stopped wearing skinny jeans

Skinny jeans. GROSS. I don’t know how anyone wears them. They’re restrictive and itchy and they make my blood boil. But I wore them for years to school, assuming everyone else hated them just as much, and adopting the ‘beauty is pain’ mindset (without much of the beauty, lol).

My point here is that autistic women put so much effort into fitting in that we lose track of our own needs. Your wardrobe may be full of horrible textures that don’t agree with your senses. If so, donate them! You don’t need that scratchy jumper in your life. Wear what makes you happy, not what makes you fit in.

Lucky for me, skinny jeans went out of fashion as I left school. So now I can wear size XL men’s clothes to my heart’s content, and still trick people into thinking I’m cool.

  1. I practised self care

Self care seems to be one of the biggest buzzwords of the 2020s. Everyone is talking about it, and it’s taken centre stage in the mental health world. And guess what, I’m no exception. 😉

As autistic people, our lives are full of stress and anxiety that NT people don’t have. We need a little extra care to make sure our minds stay happy and healthy. Once I realised this, I put more effort into crafting self-care evenings for myself.

Whether you love reading, watching Drag Race, cooking, or sitting in silence and staring at the wall (hey, I’m not judging), it’s nice to take some time out for yourself. You deserve it after all that masking.

  1. I took my headphones and sunglasses with me at all times

I am a firm believer that autistic people are walking paradoxes. I hate loud, disorganised noise, but I love blasting music in my ears through headphones. Which is why I really struggle without them. 

99.999% of my meltdowns are caused by noise. If I’m in a city centre, at a theme park, or in a nightclub, I really struggle to keep it together. So my headphones come with me at all times. 

Same with sunglasses. I think NT people don’t understand just how painfully sensitive our senses can be sometimes. Yes, I am aware that the sun has nearly set. No, I will not remove my sunglasses. Yes, I know they look good.

  1. I did much more by myself

I love doing things alone, I mean really love it. I enjoy having the freedom to go out and experience life as myself, without masking. But I didn’t really start embracing the power of being alone until I was diagnosed.

Since then I’ve travelled Europe, been to Disneyland, and eaten at restaurants, all solo. I had a whole list of things I was waiting for someone else to do with me, and smashed through it, item by item.

As autistic people, we don’t depend as much on the company of others to enjoy ourselves. And it’s freeing! I love my friends and family, but there’s a certain euphoria I can only experience alone.

My recommendation – start out small. Go on a bike ride, to a restaurant or the cinema (when it’s safe to). Maybe sit in a park or cafe and read a book. If you’re sick of waiting for someone else to do things with you, do it alone. It’s not as scary as you may think, and hey, you might even have fun.

Did you change anything in your life after your diagnosis? Was it for the better or for the worse? Let me know in the comments below, or tweet me @aspergette!

Autism Diagnosis as an Adult Woman – My Personal Story

Personal

When you listen to autistic people who were diagnosed as adults talk about their experiences with their diagnosis, you may hear them say:

“It just clicked.”

“I just knew.”

“It suddenly made so much sense.”

Or something along those lines. And while it was a very emotional moment for them, likely a happy one, it contains something much sadder hidden within it.

Many autistic adults, a large proportion of them women, have gone about their daily lives for years, feeling as if they are failing to function, never knowing why. They may be aware there’s something different about them, but they can’t quite figure out what it is.

They assume they’re receiving the same human experience as everyone else, because there’s nothing to suggest otherwise.

This is because autism is just part of who we are. Autism is not a separate layer, added onto otherwise ‘normal’ people. Autism is a key aspect of our personalities, our relationships, and, crucially, the way we see the world.

I don’t know a life without autism. People with mental illnesses, like depression or anxiety, can probably remember a time when they didn’t have depression or anxiety. I can’t remember a time when I wasn’t autistic.

If I had woken up on my 16th birthday suddenly unable to read facial expressions or keep up a conversation, I would have realised something was up. But I’ve never been able to do either of these things, and I assumed everyone else had the same issues as me.

I’m also not visibly autistic (who is??). Autistic people do not glow green, have fangs, or appear any different to neurotypical people. The word ‘autistic’ is not tattooed on my forehead (I’m sure if it were, it would have made my first 20 years a whole lot easier).

For many of us, even the way we interact with other people isn’t a clear enough signal that we’re autistic. We’re written off as eccentric, quiet, weird, interesting, antisocial, annoying, robotic, quirky, unique, but not autistic. 

And this isn’t surprising, considering most people will only ever see autistic people on their screens. These characters are always obviously autistic, with highly recognisable traits, even if they aren’t canonically on the spectrum.

The message broadcasted loud and clear by these characters is that all autistic people are instantly clockable. We never make eye contact, have funny-sounding voices, dress like a Skins extra, and are incapable of human emotion.

And so nearly everyone, including many autistic people, assume this is the only type of autistic person that exists. There are autistic people who will never know they are autistic because they aren’t like the autistic people on TV – they aren’t ‘obviously’ autistic.

Nobody around them will pick up on their autistic traits either. They don’t know that the quirky behaviour their child/friend/student exhibits is a symptom, they just see it as being eccentric/shy/badly behaved. After all, their kid doesn’t act like Sheldon Cooper, right?

I exhibited much more autistic behaviour as a child, sure. But back in the early 2000s, Andrew Wakefield’s 1998 antivax study was just beginning to snowball. The public awareness of autism wasn’t what it is today, and autism in girls was simply unheard of.

So if I have no previously ‘normal’ me to compare myself to, and the people around me didn’t pick up on my heavily masked behaviour, how could I ever know I was autistic?

Any sensible person would argue that the answer to this is easy. The only person who has experienced my life, my point of view, my social abilities, or lack of, my mannerisms, likes, dislikes, meltdowns, slip-ups, passions, and moments of grief, is me.

How did you not realise you were autistic?

How could you not know?

And to be honest, I had my suspicions. I knew something was up, I just didn’t know how. I didn’t know what was wrong with me, what made me different.

When I arrived at university I discovered a social anxiety that had lain seething under the surface for years. At school, surrounded by friends and classmates I had known for years, socialising was easy. I made all my friends aged 11, and felt comfortable in the monotonous routine and rules I lived every day for seven years.

Once I reached the end of the line, and was dropped into a pool of brand new people, it felt like a complete shock to the system, like diving into ice water. 

I had very little in common with these new people. I felt out of place and completely clueless about what was considered normal. It felt as if everyone but me was able to hold conversations, connect with each other, forge friendships. 

But that’s what everyone says in the first few weeks. Yes, everyone’s having fun but you, sure, everyone’s making friends but you. Come the end of term, you’ll have friends of your own, right?

That didn’t exactly work out either. Frankly, I was terrified. I struggled to leave my room, to do much of anything.

I made friends, eventually. But I knew then that I had social anxiety. I didn’t enter my campus’ library until my second year, and I was never able to enter the canteen alone. It took several breakdowns and calls home before I was able to enter the laundry room to wash my own clothes – I was terrified of not being able to use the machines correctly.

I did look up symptoms of autism a few times, and some of them resonated with me. Just not to the point that I considered getting a diagnosis. There were a few key autistic traits that I didn’t have. So surely that wasn’t what was wrong with me.

And that’s all I thought of it. There was nothing wrong with me, personally, I just had a phobia I needed to get rid of. No big deal. 

The reason I couldn’t keep up conversations, even with close friends? Social anxiety.

The reason I observed other people to know what to say to cashiers? Social anxiety.

The reason I found it so hard to make and keep friends? Social anxiety?

The reason I couldn’t connect with other people? Uh…social anxiety…I guess?

Other symptoms arose throughout my time at university, and got swiftly sorted into boxes labelled with mental illnesses. Depression, anxiety, and borderline personality disorder seemed to fit me well enough.

In fact, it’s not that women with autism spectrum disorder (ASD) are never diagnosed with anything. Most of them will be misdiagnosed, often multiple times, with labels that fit them, just not enough.

Because when a doctor sees a girl or woman with the tendency to self harm, an aversion to social contact, and a pervading sense of not belonging anywhere, their first thought won’t be autism. It’ll be borderline personality disorder, or depression.

And that is not to say that autistic women can’t be mentally ill. In fact, quite the opposite. Autistic women are more likely than both autistic men and the general population to suffer from depression, anxiety, and bipolar disorder.

Depression personally hit me like a truck in my final year of university. Fear around the future and two decades of not knowing what was wrong with me had caught up, and I was tired of fighting to improve my social and cognitive skills.

Because, for me, autism wasn’t like a blow from an axe. It wasn’t one fell swoop that came with a diagnosis aged 5, instantly cutting off my chances at life. It was 10,000 tiny needles, poking and prodding me and pushing under my skin.

A failed conversation would be one needle. Being laughed at at school was another. Overwhelming noise in the town centre, a pair of skinny jeans, being the only one of my friends not invited to a party. All needles. Needles needles needles.

Eventually, it becomes too much. You can understand why. Poke someone with 10,000 needles, and they’ll snap just like I did.

I sank into depression, feeling as if there was nothing I could do about it. For years I told myself if I just worked harder, pushed myself a little more, that all my cognitive issues and shyness would fade away. 

Like everything else in my life, I tried to cure it with hard work. 

It didn’t work, obviously. And I realise that now. I just wish I had known earlier.

Eventually, my parents took me home. I sat, non-verbal, in my hometown GP and was put on duloxetine by a doctor who quietly suggested to my mum that I may be autistic.

It was like a spark had lit up and rumbled into a flame. I did hours and hours of research on the symptoms of autism in women and girls. I made appointments with specialists, I started seeking a diagnosis.

I was simultaneously overjoyed and devastated. On one hand, everything I had ever questioned about myself, every tiny miscommunication or error in my thinking was able to be explained away in an instant. I wasn’t weird, or broken, or unlikeable. 

On the other hand, all my beliefs that I could somehow cure myself of my own bizarre personality traits were crushed. There was no goal, no light at the end of the tunnel. This was me, forever. Whether I liked it or not.

Coming to terms with this wasn’t all too difficult. It was a sudden shift in reality, sure, but one that I’d eventually settle into. Soon enough, I was proud of being autistic.

I finally fit in somewhere. I spent my time poring over r/aspergirls posts and studying lists of symptoms that described me better than I could myself. I belonged to a community of men and women who had suffered in the ways I had.

And once I began to understand myself, I stopped feeling so guilty about everything I had ever done in a way I perceived as weird. Social anxiety still controls certain aspects of my life, but I find myself caring less and less about what other people think.

And, aiming to live my life as unapologetically as possible, I’m here, writing this blog. It’s something I’ve always wanted to do, and I’m nothing short of desperate to make content for other autistic women.

Getting a diagnosis was the turning point of my life, the beginning of the next phase. If I were writing a biography, the moment I realised I was autistic would be followed by a big blank page with PART 2 stamped in the middle.

There’s so much that I’ve gained since then, but there was also a hell of a lot that I lost on the way there.

Experiencing life undiagnosed was painful. I never really fit in anywhere, sensory overload was frequent, and school often felt like an uphill battle. I had friends, and good grades, so I was externally a-ok. Internally I was shattering. 

The worst part, by far, was never knowing what made me so different. Why some people I had never even spoken to didn’t like me, why I felt so out of place. If I could go back in time and tell myself the answer to all of this, I wouldn’t hesitate for a second.

I guess all of this would be the best response to someone asking me how I never knew. If I had, it would have saved me from my own anxiety-filled brain. But there are no autistic people like me in the media I consume. My parents and teachers hardly even knew girls could be autistic. I hid every part of myself from the outside world in an attempt to appear normal, so I assumed everyone else did the same. I thought everyone else felt the way I did, because I had no reason to believe otherwise.

So I never knew I was autistic – someone had to let me know. The same will be true of countless other women and girls, who drift through life misdiagnosed, mislabelled, and profoundly misunderstood. 

Due to the nature of autism, we can’t always rely on those of us who have it to figure it out ourselves. Increasing awareness of its traits and symptoms, and their manifestations in both men and women is essential.

The misrepresentation of all autistic women as carbon copies of autistic men is highly unhelpful. More work needs to be done to increase accurate representation.

Parents, teachers, therapists, and people working with children should be made more aware of autistic traits in girls and women. Our collective understanding of what autism is and how it manifests can be improved and updated.

The continued work towards such a goal would be substantial, but if there’s one thing I know, it’s that it would change countless lives, for good. Girls of all ages would receive the support they need, and they won’t go through the same cycle of soul-searching and despair that may have come with never knowing.

Had I been diagnosed early, I doubt my life would have turned out dramatically different to the way it appears now. Maybe I wouldn’t have tried so hard to make friends. I wouldn’t have forced myself into uncomfortable situations because other people I knew could handle them.

But on the inside, a whole host of questions and self deprecation would never have taken place. I’m sure the diagnosed me would have been calmer, more confident, with no more empty spaces for mental illness to fester within. For now, I’m just going to sit back and enjoy Part 2.

My ultimate guide to UK autism charities

Guides

Nearly every autism charity has amazing people working for a great cause (looking at you, Autism Speaks). That being said, it’s super hard choosing which one you’d like to donate to. These charities often provide a similar set of autism services, and it can be hard to pick just one that you resonate with most.

And because I like to put as much research as possible into literally everything I do (I know, spontaneity isn’t my strong point), I started making this guide to help me decide where to donate. Eventually, I thought it might make a helpful post for anyone else who’s interested, and here we are!

While this is by no means a complete list of UK autism charities – as much as I hate incomplete lists 😦 – I’ve compiled a bunch of incredible UK charities working to improve the lives of autistic children, and adults, and the people around them. Take a look below. 🙂

***Disclaimer*** I have chosen not to include charities which I know promote the use of Applied Behaviour Analysis (ABA) on this list. I believe autistic children and adults should be able to live their lives without being forced to conform.

Read: 11 essential conversation tips for autistic women

Funding Research

Autistica – London

What they do: Autistica primarily funds research to better understand how we can improve the lives of autistic people. They work closely with autistic people and their families and take their advice on board. They have lots of projects on the go, mostly dealing with treating mental health issues in autistic people and shaping the world to accommodate them.

What makes them special: Autistica has loads of autistic people, especially autistic women, working as part of their team, and this makes me so, so happy. Their CEO, Dr James Cusack, is the first openly autistic CEO of a UK charity. I love this because I know that autistic voices are being heard loud and clear, and any representation of autistic women is an instant plus for me.

The Autism Research Trust – Cambridge

What they do: The ART also funds research, but their focus is more on understanding the biological side of autism. Their projects include studying potential genetic and hormonal causes of autism, and improving the physical health of autistic people. They’re working on some really interesting stuff, making them a great choice if you’re into STEM.

What makes them special: The ART is nothing short of dedicated to improving autistic lives through research. Their Autism Centre of Excellence also has a really cool programme which helps autistic adults gain confidence to pursue their ideal careers.

Services across the UK

Scottish Autism – Multiple locations across Scotland

What they do: Scottish Autism provides a wide range of services for autistic people in, you guessed it, Scotland. They provide respite and transition services, as well as supported living for adults. Their website also has a whole load of resources, helplines, and support for autistic people and their families.

What makes them special: The world is still very much coming to terms with the fact that women and girls can also be autistic (*gasp*). So Scottish Autism’s professional resources and support specifically for women and girls is refreshing to see. Their One-Stop Shop in Fife also offers in-person information and advice, confidential appointments, workshops, and parent groups.

Pink image with pink shapes saying "Scottish Autism's professional resources and support specifically for women and girls is refreshing to see."

Autism Initiatives – Multiple locations

What they do: Autism Initiatives is heavily involved in their local autistic communities, with outreach and resource centres designed to support those with autism. They run two schools and a college, as well as homes for autistic children.

What makes them special: Another charity with outstanding autism support for adults! Job training, opportunities for socialising, short break services, free post-diagnosis support in Scotland, the list goes on and on and on. And I love to see it.

Autism Alliance – Multiple locations

What they do: Autism Alliance is a group of 17 autism charities across the UK, providing services to their local areas. If you’re interested in donating to a local autism charity, it’s worth checking out one of their members:

  • Autism East Midlands
  • Autism West Midlands
  • Kent Autistic Trust
  • Autism Bedfordshire
  • Autism NI
  • Autism Anglia
  • Autism Hampshire
  • Autism Wessex
  • North East Autism Society
  • And many more charities

Services in specific locations

PACT for Autism – Essex

What they do: PACT offers a massive range of information on autism, including sources of financial support, where to buy specialist products, and disability rights. Their monthly info meetings for parents involve guest speakers and links to other services. They also have a comprehensive collection of advice on things like employment, education, and housing for adults.

What makes them special: I don’t think I’ve ever seen a bigger collection of resources on one website! 

Autism Together – Wirral

What they do: Alongside their services for autistic children and their families, Autism Together offers a freshly-refurbished respite accommodation for trips away, and supported living schemes. Their website also provides parents and carers with courses on a number of topics – from anxiety to communication skills.

What makes them special: Their Community and Vocational Services (CVS) get autistic people active and involved in achievable training and work experience. Activities can lead to qualifications, and include:

  • Creative and performing arts
  • Environmental work and animal husbandry
  • Health and well-being sessions
  • Social enterprise
Blue image with a pink shape saying "They're a small, yet mighty, charity, and everything they do radiates with love."

The Toby Henderson Trust – Newcastle

What they do: With two locations around Newcastle, The Toby Henderson Trust provides events, workshops, and social groups, as well as assessments and a range of therapy and counselling. They’re a small, yet mighty, charity, and everything they do radiates with love. Their story is a lovely one, and well worth a read if you have the time.

What makes them special: Their interactive playroom is a stellar feature of both sites – it produces enough smiles to fill a swimming pool, and makes the world of difference for their children. AND they’re the only charity on this list to have a HOUSE DOG, a gorgeous labrador called George! ❤

The Autism Group – Berkshire

What they do: Socialising and community spirit is at the heart of TAG’s services. The (currently virtual) clubs run by TAG cater to all tastes, from arts and crafts, to Animal Crossing, to more serious gaming for older teenagers. They also provide incredible support groups and workshops for parents and carers, with one specifically for girls on the spectrum (YAY).

What makes them special: Their clubs are such a unique way to get autistic kids and teenagers socialising. TAG clearly knows what they enjoy doing and caters to that!

Autism Angels – North Yorkshire

What they do: With an army of beautiful horses, Autism Angels gives autistic children the chance to get up close and personal with these therapeutic animals. Their clubs also help autistic children meet new friends, and bond over their love of animals.

What makes them special: I can’t speak for all autistic people, but the bond that many of us have with animals is deep and super unique. Horses in particular have long been recognised as being especially therapeutic to humans. Of course, not everyone has several horses in their back garden, making Autism Angels the perfect opportunity to bond with these animals in person.

Do you know of any other UK autism charities in need of support? Let me know in the comments and I’ll add them onto this list!

11 essential conversation tips for autistic women

Guides, lists

If there’s one thing I could definitely live without, it’s small talk. I just don’t get it. I mean, why talk about things nobody actually wants to talk about? If you’re reading this, you’re probably in the same boat.

Socialising and conversation is a huge part of life, much to the frustration of autistic people. Between networking, first dates, and making friends, our whole lives depend on small talk. And it seems like everyone but us knows how to do it.

Before I knew I was autistic, little me was determined to learn the secrets behind mastering small talk. Seeing other people come up with conversation topics like it was nothing amazed me. I wanted to have that ability more than anything.

I told myself I was going to get there, no matter how stressful it was. And sure, it was stressful, but I fired up my laptop and got to studying. In fact, I think I put the same amount of effort into studying basic social skills as I did into my exams.

A decade later, I’m still not a conversation pro, and my small talk skills have their ups and downs. BUT! I did improve with practice, and learned along the way that socialising doesn’t have to be miserable and exhausting.

Over time, I picked up some techniques that I use to make myself more comfortable, and others that help conversation flow more smoothly. So without further ado, here are my tips for developing conversation skills for adults with autism.

  1. Be as comfortable as possible

The first step to any good conversation is being as relaxed as you can. If you’re nervous, it can come across to the other person. Nobody wants to be stressed out of their mind for any reason, so take a few seconds to check on yourself throughout a social situation.

  • Take a few deep breaths.
  • Focus on the other person: how they look, what they’re wearing, what they’re saying. This stops you from worrying about yourself, how you look, what you’re saying, and so on.
  • Excuse yourself for a break if you need it. It’ll give you a chance to calm down and refocus.
  1. Don’t force eye contact

For most autistic people, eye contact is suspect number one for unnecessary panic. If you don’t want to do it, you don’t have to. 

It sounds so simple now, but realising that one fact changed everything. I never knew it was even an option! We get told our whole lives that our eye contact must be improved, that it’s something to be corrected. It’s not, of course, it’s a part of who you are. 

So unless you’re in a situation where eye contact can have a big impact, i.e. job interviews, don’t force it. This’ll calm you down, and clear up your brain to make listening easier.

If someone picks up on it, politely explain that eye contact is uncomfortable for you, and you find concentrating easier without it. Small talk is hard enough as it is, and anything that helps you relax is a step in the right direction.

  1. Memorise some go-to conversation starters

It happens to everyone. One moment, you’re happily chatting away, and the next, the conversation starts winding down with no warning. You’re left racking your brain trying to come up with more topics, to no avail.

The best way to combat inevitable awkward silences is to keep in mind some subjects you can talk about. Memorise some questions to ask when there’s a lull in the conversation. Some good ones are:

  • If you could travel anywhere in the world right now, where would you go and why?
  • Would you rather explore outer space or the ocean floor?
  • What’s the best decision you’ve ever made?
  • What animal do you see yourself as, and why?
  1. Ask open questions

Asking questions is the best way to continue a conversation. Most people love to talk about themselves and will happily answer any questions you ask them. The only problem is remembering to ask them.

It’s all too easy to get wrapped up in what you’re passionate about and forget there’s someone else there. I know I can talk about my special interests for hours after everyone else gets bored. And I do…often. 

This is why I like to think of conversations as a game of tennis – they ask me a question, then I ask them one. Everyone gets to talk about themselves, and nobody’s bored for too long.

  1. Use active listening

People always assumed I’m a natural listener because I’m quiet. Big mistake. It’s honestly impressive how I managed to be bad at both talking and listening. That is, until I started practising active listening.

Active listening consists of really taking in what the other person is saying. Pay attention to their words and reflect on them for a moment. Then, respond with related questions or by summarising what they’ve said. It’s a great trick that’ll subconsciously draw them in, and you’ll never be stuck for something to say.

  1. Compliments are your best weapon

Who doesn’t love a compliment? Everyone loves hearing things other people like about them. If you’re looking for a topic, complimenting someone on their outfit, shoes, or book they’re reading is a great choice. It gives them the chance to talk about where they got it from and what they like about it.

  1. Read the news

The news is always full of random stories and interesting events you can talk about. Plus, absolutely everyone, young or old, has an opinion on what’s been going on in the world. 

If you have 5 minutes to spare each morning, skim through a news website. You’ll instantly have a fresh supply of conversation topics, ready for when you need them.

  1. Avoid delicate topics

Okay, so maybe it’s not a great idea to talk about the latest political scandal or controversial TV show. The last thing you want is to end up in an argument, so it’s best to stay away from certain subjects. Convo topics like politics, age, religion, and anything for *mature audiences* is a big no. Trust me, I learned this the hard way.

  1. Use positive affirmations

My brain just loves a good spiral. The moment I think I’ve said something weird, it does. Not. Stop. Freaking. Out. 

And it turns out, it’s actually kind of hard to talk to someone when you’re panicking about what you just said. Or if there’s something on your face. Or if they’ve noticed your wonky eyeliner. It’s the wonky eyeliner, isn’t it?

The moment you feel yourself start to spiral, use some positive affirmations. Repeat them, repeat them, repeat them, and then keep them in the back of your mind until you’ve got control again. If you haven’t got any affirmations of your own yet, here’s some I made earlier:

  • I have interesting things to say.
  • People like me and they want to talk to me.
  • Other people are more worried about themselves than about me.
  • I’m a friendly person and they’re happy I’m here.
  • They haven’t noticed my wonky eyeliner.
  1. Don’t push yourself too hard

Being autistic means we often find things more difficult than neurotypical people, especially socialising. Constant masking and pushing yourself into uncomfortable situations too often can lead to autistic burnout, or serious mental health issues. 

Always check in and make sure you’re taking care of yourself. If you don’t feel like talking today, listen to your brain and take some time out. You should never force yourself to socialise at the expense of your mental health.

  1. Practice makes perfect

As with anything in life, the more you do it, the better you’ll be. It sucks at first, but practising often is the best way to develop conversational skills. The best part? It gets easier and easier with every minute of small talk.

As your experience grows and your social skills improve, you’ll find yourself enjoying chats with other people. You’ll learn about their lives, pick up weird facts, even make new friends. You don’t need to be perfect – even the chattiest extroverts have awkward convos – but it’s totally possible to become a good conversationalist over time.

Got any more tips for surviving small talk? Drop a comment below and let me know how you cope with socialising!

Autism and Self-Identity

Guides, How to

Productive as ever, I recently binge-watched the latest season of Netflix’s Big Mouth, and found myself facing a reflection of my own identity crisis. In the 9th episode, Horrority House, the main cast is confronted with the forefront dilemma in each of their lives, styled into a horror film-esque scenario.

One character, Missy, is sealed into a hall of mirrors – a nod to Jordan Peele’s Us – and faced with a swarm of her ‘identities’. The identities tell her “there can only be one”, and promptly start killing each other off.

Missy’s identity crisis was part of her coming to terms with living as a mixed-race girl – her identity changes based on the situation she is in. With so many identities under one roof, she has no idea which one is the real her. She believes there can only be one.

As autistic women, how can we feel sure of who we are when our identity shifts so often? Autistic people often describe feeling like a chameleon, blending into every background, altering their hue at the slightest change in environment. These are symptoms of autistic masking, which often results in burnout.

For the neurotypicals around us, this is great. It keeps them comfortable, makes sure they can talk to us without being distracted by our ‘otherness’. For us, it can result in a distorted sense of self.

Receiving a diagnosis later in life often has a groundbreaking impact on identity. It can evoke feelings of grief, you may even feel as if you no longer know who you are. I remember feeling disconnected from my former self, almost reincarnated.

An identity crisis is stressful. Some people spend years racking their brains, trying to come up with a list of what makes them them. I like to think I’ve clawed my way through the worst of mine, thanks to some sage guidance from all corners of the internet, but it still comes back to bite me every now and again.

Like pretty much everything in our lives, this advice isn’t doled out with autistic women in mind. So I’ve ASD-ed it a little and laid it down in my favourite blog format: a numbered list. I won’t promise you enlightenment and eternal mental stability, just a couple of tips I found helpful! Take a look below.

  1. List your beliefs, morals, and ideals

This is easier said than done, though can prove rewarding during an identity crisis. Asking yourself questions on what you want out of life and what you do or don’t agree with builds a profile of who you are as a person.

  • What occupation would I like to end up in?
  • What do I enjoy doing?
  • Would I like to get married?
  • Would I like children?
  • Where do I stand politically?
  • What are my religious beliefs?
  1. Spend some time alone

Time spent by yourself, regardless of what you’re doing, is time spent as yourself. 

Each time I travel alone, I discover more about me and what I like to do. I visit museums and botanical gardens, I go on bike rides and try local food – for the sole reason that I like to do it. I enjoyed these things in the past and I’ll enjoy them in the future, and liking them is a stable part of my identity.

The same will be true for you! Choosing activities on your own gives you a freedom that may not come with spending time with friends. Work out what it really is that you like to do, and what these hobbies say about your identity. 

  1. Keep a bucket list

What can I say, I like lists! Since around 2013, I’ve kept a looooong list of all the things I want to see, do, and eat. Pretty much anything and everything I’ve ever felt like doing is on that thing, from visiting Mexico to screaming into the void.

If, like me, you hate abstract concepts and flimsy ideas of personality, this is a really good, concrete way to tell yourself who you are. Bucket lists last a lifetime, hence the bucket part, and every little numbered item represents something you like, something you’re interested in.

Whether you’re planning on petting a famous dog, writing a novel, or seeing the world’s largest chair (which is in Austria, btw), these all say something about you. They’re things you may have wanted to do for a long time, and probably will want to do for a long time. It’s a nice thought, right?

  1. Link your present to your past

For those of us who were diagnosed in adulthood, the news comes as a shock to the system. I remember feeling like I didn’t really know myself, like my autism was a secret I had been keeping from myself.

What helped a lot was noticing all the times my younger self exhibited the autistic traits I’ve retained as an adult. It helped me to see that I’ve always been the same person, and receiving my diagnosis didn’t change that. 

  1. Remember you are made up of all your identities

At the end of the episode, surrounded by shards of her mirror identities, Missy constructs Mosaic Missy. She realises that she doesn’t have to pick any one identity, she can exist as a combination of all of them.

It was a nice reminder that we’re never one consistent identity all the time. Humans are clusters of personality traits, likes, dislikes, relationships, and so on. 

You can be the person you were before a diagnosis, and the person you were afterwards. You can be who you were at the age of 5 and who you will be at 95. You can be mature and immature, outgoing and shy, and you don’t have to pick one or the other.

High-functioning autism and sense of self don’t always go together. Personalities are complex, abstract, and hard to understand, especially when it’s your personality. But you have your whole life to figure out who you are, it doesn’t have to be done today. Just take it one step at a time!