Worries

I worry every day. I can’t stop the flooding in my brain. I worry about the fact that only 16% of autistic adults are in full time paid employment, and that only 32% are in any kind of paid work. I worry about the fact that I don’t look autistic and most people don’t realise just how autistic I am. They think I can fix my autistic traits if they keep telling me how to improve myself, but you can’t fix autism. It stays with you forever. I worry about the fact I may lose all my friends one day through my lack of understanding social communication. I say the wrong things often and I don’t understand why it was the wrong thing. I don’t understand other people’s social signals, either. I think I’m losing friends already.

I worry about the fact that 1 in 3 autistic adults are experiencing severe mental health problems and I think I’m one of them because I can’t see properly most days. All I see in front of me are traps. I think about all the ways I could fail in life frequently, and it isn’t enough to just think positive. I try, but then I think about all the negatives of that positive.

I worry about the fact that I want to do something big with my life but that I will never get the chance to. Don’t say I can if I try. Then, I’ll feel worse about not doing it. My autism looks like it doesn’t affect me much so people encourage me to do things that they would never encourage someone with a more visible disability to do. Just because mine is invisible, people think I can do things. I’ve tried to do more with my life and it ended in terrible situations each time, because of my autism. Each time, I remember back to those scenarios, and I think they will happen again. That is why I cannot do what I want with my life. I cannot experience the opportunities many are lucky to grab. It will end badly.

I cannot see any future for myself, personally. I see the future of everyone else around me — but not me. I have no future. One day, I might be all alone and not know how to cope with the world I’ll be all alone in, and that frightens me the most. I fear that I will be stationary, like a statue, for my entire life. I once had dreams and aspirations that burned down before me when I realised I can never complete those.

I’m depressed. I’m anxious. I’m autistic. No one wants to deal with someone like me. I’m too complicated for them. I’m a mess. I lie to people most of the time with simple texts and funny pictures. I don’t want to be remembered for being a fraud. I want to be remembered for being an author who volunteered with animals regularly, but that is not going to happen. I have had far too many set-backs already. My autism is literally stopping me from getting opportunities (I was turned down by a volunteer agency when they found out I was autistic, despite the fact I could do whatever tasks they wanted me to). I have tried more than once to fit in with society and it did not work out.

The truth is that I’m tired. I feel like an alien. No one understands me. I will not speak this aloud but I will write it in a blog post because that’s what my blog is about. Expressing myself.

Honestly, my pets are what keep me going. Seeing them each day gives me something to smile about, but there’s not much more for me to smile at anymore. I feel alone and frightened about my future. I have my family but they won’t be here forever, so what happens then?

I don’t know.

Lia

 

Advertisements

Meeting People

One of the most terrifying things for me is meeting new people. I don’t know what they’ll think of me and whether they’ll accept me. I’ve struggled with trying to fit in for my entire life but recently I decided I’ll never fit in, so why try? I am always scared that when I meet someone new, I will be awkward. I am a very awkward person and I end up talking about weird things. Sometimes, I don’t talk at all. This often happens when I’m at a doctor’s office; my mum will speak for me because I’m unable to. I don’t know when these bouts of silence will happen (it’s usually when someone is authoritative or scary) but I always hope that I’ll be able to speak when it matters. However, sometimes I’m scared that if I speak, I’ll say the wrong thing.

On Monday, I met new people and it was very scary for me because it’s not something I do a lot. Afterwards, I was depressed and anxious because I worried a lot about every single thing I had done. This always happens to me but, after a few days, I get over it and am much happier. I begin to think clearly and realise that I wasn’t so bad after all. I talked to them, quite a bit, and, whilst I might have said some weird things, they didn’t seem to mind. I think so much about myself. Someone pointed out to me that the other people are probably thinking about themselves too so will not judge me. I think this is a good point. I think about myself, so they will think about themselves. We all worry about what we say or do but, in the end, no one else cares.

I think meeting new people is an important part of life and we all do it. I don’t do it very often due to mainly spending time with my mum, as I’m autistic. However, I think that I should try to do more things that are out of my comfort zone. I need to be brave. One day soon, I think I will make a recipe by myself. I usually ask my mum for help but I think I will try and do it all by myself.  That’s one thing. Little things can help me gradually become more independent.

Lia

Depression Is Why

Depression is easy.
When people leave you behind,
When they wish you well,
But don’t do anything to suggest
that they mean it —
When you’re left all alone,
Just a lonely girl in a room alone,
They’re going off to places
and you’re in the bathroom
crying,
but maybe they do like you;
they just don’t understand.
You want love, you crave it,
Like a cat or a dog,
It’s your energy, it keeps you going,
But seeing them happy
makes you smile for a moment,
Only a moment,
as you realise,
you’ll never be good enough
because you’re you and they’re them.
They can go into the world and embrace
the love of everyone around them,
because that’s what being normal is —
and you aren’t like them,
that’s why they left you alone.
You’re different.
You wouldn’t get on with the world.
Depression is why.
Anxiety is why.
Autism is why.
That’s why you cry,
You want to be a part of an art gallery
but you’re just the frame of a painting;
you’re there, to make the painting
look nicer, but the painting is the main
attraction.
What’s wrong with you?
You should be happy!
Depression, that’s why.

What is there?

I am sad at the moment. That’s why I haven’t blogged in a while. I didn’t have anything to say because nothing was happening to me, except my mind was crumbling.

Everyone I know has a future. I can see them living their life happily in the future. But I can’t see my own future.

I have autism, which makes most social situations much more challenging. I have selective mutism, which is why most jobs wouldn’t work for me. You can’t exactly blank the customers! Most people don’t understand why I’m unable to work, encouraging me to try, and telling me about opportunities, without realising how extremely anxious this makes me. In my current state of being, normal jobs just aren’t for me. I can’t do it because of my challenges. But I want to have a goal, something to strive for, to live for. Because, at the moment, I have no goal. I’m not living, I’m surviving. I can’t do a lot of things because of my problems but because no one can actually see my disability, they keep encouraging me. It’s nice, that they think I have potential, but to be honest, it’s kinda like telling a blind person to see.

I want to do something so bad but I’m tired, I’m sad, and I have no motivation. My anxieties are everywhere. What is there for someone like me to do? Someone who can’t even go out alone, someone who often can’t speak for herself. What is there?

Dyspraxia To Me

It’s dyspraxia awareness week, so I thought I’d do a post on it. Some of you might have watched the recent ‘Doctor Who’ episode and noticed that a new main character – Ryan – has the condition. I was extremely impressed by this stance as dyspraxia is almost never portrayed in fictional characters. You often have clumsy characters, but it is never said that they have dyspraxia. However, it was made very clear that Ryan does have it. His struggle with learning to ride a bike was something all too real for me as I too suffer with dyspraxia and have never learned to ride a bike. I tried, but I could never get off the stabilisers. This is a problem for many dyspraxic people – though not all. My mum is dyspraxic and can ride a bike. Each person has their own weaknesses and strengths.

People often think that dyspraxia is just a medical term for being clumsy but it is more than just physically bumping into things a lot. It can sometimes give problems with speaking. For me, I get words muddled up and I end up saying the completely wrong word or phrase or pronouncing it wrong. People always correct me and it makes me really angry sometimes because it’s not that I’m stupid. It’s not that I don’t know how to say it. It’s that my mouth doesn’t work with my brain. It can also affect handwriting, making it hard to read. At school, I had terrible handwriting, so they tried to make me join it up — this, however, just made it impossible to read. Thanks school.

I don’t know how to do up a bra. A simple task that lots of girls my age can do is impossible for me. I remember, for years, I’d get my mum to do it up. Now I wear sports bras. I also used to have to wear ties at school, which I could not tie. PE was a nightmare. I can’t tie my hair into a bun. I remember, once, for science (and this was our practical exam so it was important) I had to tie my hair up into a bun. I knew how to do it into a ponytail, so I did. The teacher, in a very angry voice, told me to do it into a bun. I didn’t. I couldn’t. Remember, I’m also autistic, so I couldn’t exactly express this to her. I felt embarrassed and ashamed because every other girl could. She repeated herself, even more angry. I kept fiddling with my hair until finally – as if by a miracle – it became something that resembled a bun. I then burst into tears. Luckily, goggles were covering my eyes so my teacher didn’t notice. She called me over to check my bun. It was fine. I was safe. I could continue with the practical exam. I think, if I hadn’t have done my bun up in that moment, I might have walked out of the classroom and jeopardised my grade. I still can’t do up a bun; that was just a moment of madness where my hands managed to do it. I haven’t been able to repeat it since.

I’m terrible with organisation, and time management, and directions. Don’t ask me to read a map for you. I also can’t do up shoelaces. There’s a lot of things that dyspraxia stops me from doing. It is a disability, yet it is in the shadow of other conditions, and I just don’t know why. For instance, if I were to tell someone I was autistic and dyspraxic, they would immediately start thinking about my autism and how that must affect me. My autism is what everyone talks about, but my dyspraxia is also very challenging to deal with, and it really isn’t recognised that much. Most kids are told they’re clumsy or stupid when they might have dyspraxia. I think it’s seriously under-diagnosed.

That’s what awareness is about. Getting people to recognise the symptoms so they wonder whether they have it or someone they know has it. Remember: it plays out differently in everyone.

A lot of dyspraxic people struggle with sports; catching and throwing a ball can be a real challenge. I’ve struggled with sports and was often told that I just wasn’t good at anything. I have terrible posture, also a result of my dyspraxia. This posture issue causes me pain when I stand up for too long but I can’t say to people that, because I’m disabled, I deserve to sit in that disabled seat on the train. They’d look at me and think I was a liar. I don’t look like I have a disability. The ignorance is astounding.

I have autism and dyspraxia, which are actually quite often found together. Dyspraxia can be found alone, as with my mum, but is usually accompanied by something else. It is also said to be much more common in men than women but you don’t really know how many people truly have it, due to the fact it is under-diagnosed, and whether the statistics are as true as they seem.

Dyspraxia isn’t just clumsiness. It’s much more than that. I hope this post helped you understand some of the difficulties we face and begin to recognise the signs that someone has dyspraxia. Remember that we are all different and this is just my story of dyspraxia. Somebody else’s story might be very different.

Lia

Dear Eve: Meltdowns

Dear Eve,

Thank you for reading my first letter. It means a lot that someone, however fictitious you are, is reading these. So, my fictitious friend, here is my second letter.

I have meltdowns a lot. When I have a meltdown, it’s because everything gets too much for me. These show in various ways, depending on who I’m with. If I’m with my family, I generally have more active signs. I’ll start talking loads at first, basically saying why something’s not how it’s supposed to be, and eventually I’ll cry if it isn’t resolved immediately.

My meltdowns with other people aren’t so obvious, however. People won’t really notice that I’m having a meltdown. I go subdued and quiet, and I kind of try to think about nothing at all because if I think about something, I’m worried my meltdown will become visible. On occasion, I do have more visible signs, but I try to postpone them for as long as possible. I’ll go on my phone a lot if I’m feeling really worried and I will probably text my mum. My mum usually answers quickly and she always distracts me with updates on the pets. I find talking about my pets calms me down instantly.

I’m terrified that someone will notice I’m having a meltdown and think that I’m being ridiculous or that I’m a bad person. I heard a story of someone buying all the apple pies in McDonalds because they heard a kid ‘being bratty about wanting one and having a tantrum’. It made me think: this person judged this kid without even knowing the kid. Perhaps the kid, like me, was autistic or had another problem? How do you know? You don’t. So I always worry that people will think terribly of me because I look so ordinary. I don’t want to be thought of like that.

I wonder if you’ve ever had meltdowns, Eve. A lot of people have them; it’s just that they’re more common in autistic people. My mum has them herself quite often but she isn’t autistic. She is dyspraxic however, so isn’t exactly ‘neurotypical’.

It’s nice discussing these things with you because I know you’ll never reply with advice on how to fix my problems. The truth is, Eve, I can’t fix my problems. I will live with them for my entire life. I can figure out ways of dealing with them, but that isn’t fixing them. I don’t like it when people, especially people without autism, tell me ways I can improve myself. They don’t know how tough it is for me and how terrible that advice makes me feel, Eve. I feel constantly like everyone is trying to see me as a person with potential, someone who can become something. That pressure to be what they want me to be sits inside me always. My IQ means nothing. It’s not about how clever you are, it’s about how suited you are to the world, and I’m a cat in a dog food factory. Basically, the world is wrong for me. I try to fit in but I never will.

I’ve accepted that I won’t fit in, but some people still try to see me as someone who needs to fit in with society. I need to work hard to get somewhere (where am I going? I don’t know), I need to not have meltdowns, and I need to respond when people talk to me. I like how you don’t expect these things of me, Eve.

People think these things are simple, but there are a million reasons why, for me, they’re not simple. I could go over the list but I don’t think you would finish this letter, Eve. So I’m just going to say one thing: this isn’t me. I’m not steady, I’m not calm, I’m not social. None of that is me. I sometimes feel like no one really knows me but I guess you’ll know me, Eve. These letters will help you know me. Thank you, again, for reading.

Love,

Lia

I’m Autistic

I’m autistic.

I don’t like maths or science. I’m not a massive fan of trains either.

Music is good, but I don’t listen to it on big headphones constantly, putting the same song on repeat for years.

I’m not a boy and I didn’t attend a special school either.

I don’t rock constantly and I actually enjoy social interaction. Not all the time, but sometimes it’s nice.

I do indeed have empathy, in fact I am more sensitive than most people.

My name is Lia. I’m 19 years old and I was diagnosed with autism when I was 15. I had been struggling with school for many years before that, especially with bullying (which was most severe when I was 12). I didn’t know how to make friends, or how to keep friends. Most friends I made have drifted from me. They were temporary and I tried to keep in contact with a few but I don’t think they wanted to keep in contact with me, as their replies were very short and hard for me to respond to. It’s okay; we make temporary friends and long term friends.

As an autistic person, I have interests that are more deep than most people, but perhaps not as deep as other autistic people. I say this because I’ve suffered with mental health issues which have interfered with my interests at times. A particular interest of mine is animals, something that I have been crazy about for years. I love animals and love learning about them. If you have any interesting animal facts, be sure to let me go.

I was always an English person at school. I preferred essays to maths equations. It was always easier for me to write an opinion than solid fact. I just never understood or connected with maths, whereas English taught me that, to get good grades, you had to have your own opinion.

I know of autistic people that fit the criteria I listed above, and that’s okay. But we really aren’t all the same. I love sensory toys as I have trouble with my senses getting overwhelmed. I find they calm me a lot. I love to feel textures in my hands, but not in my mouth. Food that is too textured isn’t for me. I like it smooth and consistent.

I struggle with independence, one of the most suggestive traits of my autism. If I were more independent, perhaps people would think that I didn’t have autism. I also struggle with getting words out and might say things that are inappropriate because I want to fill a gap but I don’t know what else to say. People think I’m strange because of this, or sometimes they don’t notice at all. I prefer it when they don’t notice, or pretend not to notice, that I said something inappropriate. When they look at me strange, I become embarrassed.

The worst thing in the world for me is noise. It’s something I can never escape. It’s always there, somewhere, trying to climb into your ears. It drives me insane and I feel so sad when it is loud. Some people might be annoyed at too much noise, but for me it ruins my life. There are a few people that are insensitive when it comes to noise and that makes me upset.

Anxiety is a very real problem for me. It is the voice that never goes away. It cripples my mind and my heart. It isn’t something you can just get over. It works out every single possibility of everything then it combines them into one overwhelming feeling of destruction. That’s what anxiety is, for me.

Autism isn’t a stereotype, it’s a sphere of differences and I know very independent autistic people. I know people who love maths and people who hate it. I know people who love to rock and people who prefer other methods of stimming. I know more autistic females than I do males. In fact, I don’t know autistic people at all. I just know individuals.

Thank you for reading,

Lia

Say What You Mean!

Something I struggle with a lot is people saying one thing but meaning another. I automatically assume that they mean exactly what they said, but this often isn’t the case and it’s very confusing deciding whether or not they meant what they said.

Sometimes, this makes me feel betrayed when they didn’t adhere to what they said, but it can be because they never really meant it in the first place. They were just making conversation.

For instance, someone says ‘oh we should do that sometime’ or ‘we should meet up’ but they didn’t really mean it. It’s something that a lot of people seem to say but not mean. It’s kinda suffocating trying to differentiate between a legit promise and a fake one. I just wish people would say exactly what they mean. It would make life a lot easier.

If people told me exactly what they thought of me, life would be easier too. I can differentiate between people who like me for who I am and people who want me to become something I’m not — and stick with the friends that accept me.

I just don’t understand why people always say the opposite of what they mean. It means that I get my hopes up for something that’s never going to happen. Over the years, I’ve had a lot of failed promises, but I still seem to get my hopes up because I never know when one is real.

Sometimes, promises are real, and I am so thankful for the people that say what they mean. For instance, when MyMindSpeaksAloud said that she’d love to go to a cat cafe with me, I was wondering whether we were really going to do it. Now it’s booked and ready for August! I am very excited about it, and it’s really happening, unless a cat-astrophic event happens that prevents it. I love puns.

If people just told everyone what they meant, we would all have a much easier time, in my opinion.

Do you find people confusing?

Lia

I’m Not Who You Want

I’ve noticed that people expect a lot from me. Honestly, I can’t do everything that is expected. People forget sometimes that I’m autistic, I think. I guess, for a while, it makes me feel more normal but I shouldn’t have to hide myself. My true self isn’t the person people want me to be. This doesn’t mean that people should avoid me, or worry about how to talk to me; they should talk to me exactly how they would anyone else. The only difference is that my reply might be vague or unexpected. It might not be what they wanted. I try to talk normally but sometimes my words get knotted and I end up saying something different than what I wanted to say. That’s just how I am. My thoughts and my words often don’t align. Sometimes, I don’t even speak at all, and that’s not because I don’t want to speak; I feel a physical block on my words. It happens most with strangers but it can happen at anytime with people I’ve known for a while too.

When chatting online, I come across as a very different person to how I act in real life. I type what I wouldn’t dare speak, and my online voice is more confident than my real one. This too can give people the impression that I am capable of a lot. The truth is: it embarrasses me to talk about what I can’t do. That’s why I don’t mention it to my friends unless it’s important for them to know. I put on this act that makes me appear able to do lots of things, when really I struggle to do most things.

I’m someone who needs a carer. That carer is also my mum, which means she is around me constantly, to help me do things. I’m someone who needs someone to go out with me, because I can’t go out alone. I’m someone who has a meltdown about the silliest things. The other day, I had a meltdown because my mum thought my meal was hers and peppered it. It was pasta and I can’t eat pepper on my pasta. A lot of people wouldn’t care about something like that but, like I said, the silliest things cause me distress. I have to have things exactly how they’re supposed to be and, if something goes wrong, I can’t cope.

I’m not who people want me to be. I’m trying so hard for my problems to not affect me, but they will always affect me, because autism isn’t temporary. I don’t mind being autistic, it’s who I am, but sometimes I wish it was more understood. There are many stereotypes around it, but I’m not those stereotypes. People thing that if I keep trying, one day my problems will go away. They won’t go away. I’m autistic for life. I can try to make things easier, but it will take time. It’s not something that can happen overnight.

Maybe one day I’ll be able to go out alone, but that day is not today, and it probably won’t be for many days yet to come. People who pressure me into trying to do things that are hard for me just make it harder still. I’ll do things at my own pace.

Understanding isn’t easy if you haven’t experienced it, but imagine you walk into the middle of a movie, and have missed important parts of the plot. You keep trying to ask people questions, but they’re busy watching the rest so they keep telling you to be quiet. That’s kinda what it’s like. You don’t understand what’s going on and you try to figure it out, but you’re still way behind.

Thank you for reading this post,

Lia

What Not to Do to an Autistic Person

I’ve mentioned this before in posts, but I thought I should put a disclaimer before this one, just so you know. Autism is a spectrum, and the things that I don’t like or that make me stressed might not necessarily be the same for other people on the spectrum. They might have other worries.

This is a list of tips for people who might know someone with this condition. However, it is definitely not accurate for everyone, as mentioned above. It is accurate for me, though.

  1. Do not make arrangements with me that have less than a week’s notice, or that don’t have all the details sorted out until very close to the scheduled day of meeting. This stresses me out so much and I get so worked up over it that I am 84% going to cancel. If I don’t cancel, I’m probably going to be sad and tired for a while after meeting, because I hadn’t mentally prepared myself for it.
  2. Don’t speak to me in a demanding way, or with a stern voice. This just causes me to panic and I actually take longer to do the task than if you had just asked nicely.
  3. Please don’t ignore any text questions I have! I cannot stand the ‘read’ feature on social media. I use Facebook and Instagram most often (both of which have this feature) and it causes me an unsettling amount of anxiety when someone ignores my text. I’m talking about people who read it and then decide to never respond. This applies largely to questions and stuff that would normally incite a response. Just.. please…
  4. Don’t look at me too intensely. I am alright with you glancing at me occasionally but it kinda makes me feel uncomfortable if you look at me too long. I’m sorry, it’s just hard to deal with eyes looking at me… I sometimes want to permanently hide under a sheet so no one ever has to look at me.
  5. Try to avoid touching me. I am extremely sensitive to touch, and sometimes I feel so obliged to hug people and it really feels awkward and uncomfortable. Also, please do not touch my arm or something if you’re trying to get my attention or for whatever reason — I know you only lightly touched me, but it hurts! Most people wouldn’t be affected but sometimes my mum will tap me and I’ll go “ouch!” and she’ll think I’m being over-dramatic, but it actually hurts.
  6. Compliments… gifts… help. I am alright with compliments and gifts, as long as you don’t expect a response. I have been called rude for this but it is just so awkward! I am really grateful that you like my hair or for the potato you gave me but it makes me really embarrassed, especially around people who aren’t my close family. My mum calls me beautiful every day, that’s enough compliments for my entire life! I also struggle with confidence and don’t know whether you’re being nice or truthful. It’s hard to decide!
  7. Don’t speak too loud. You can speak at normal volume, but do not yell at me or raise your voice. I’m sensitive to noise, too, and tend to retreat from loud noise and often won’t respond, or might even try to cover my ears.
  8. Don’t expect me to never say inappropriate things. If I’m feeling awkward, or the conversation has stopped flowing, I probably will say something inappropriate. For instance, I might say something about potatoes because I love them and they’re the first thing I can think of. What gets me is when people question why I said that, or look at me strange. I’m not like you.
  9. Don’t forget me. I know I’m not the best person at maintaining friendships, because I eventually drive them away with my inappropriateness or my anxiety, but I always try to do the right thing. I try. It’s hard when people don’t accept me for the way I am, and how difficult I can be. I might be complex, but I can be solved. Just try it.

Thank you so much for reading this post,

Lia