What does autism look like?

Consider these two people and think about which one may have autism –

Person A has a degree and works full time as a paediatric speech and language therapist. She is in a loving long term relationship. She drives a car and has a mortgage on a 4 bedroom house. A typical day at work can consist of school visits, clinic sessions, completing admin and attending meetings with parents, health professionals, school staff and other people who may be involved in a child’s life. Person A enjoys spending time with her family, and in particular, baby sitting her young nephews.  She has presented to a room of psychiatrists about a study she is helping a PhD student to carry out. When she was younger person A took part in dance competitions around the north west and also learnt to play the keyboard. She always did well academically and her behaviour in school was impeccable. As a child she had a reputation for making people laugh and being the joker of the family.

Person B finds every single day exhausting and getting out of bed on time can be hard. She finds it hard to organise her time and needs to carefully plan the day before getting out of bed. If there is a change to the plan then person B can become very distressed. She spends every evening from 5pm-10pm and most Saturdays with her parents because although she moved out 2 years ago it is hard for her to break a routine, plus she needs some help remembering  everyday tasks, such as eating. When person B arrives at her parent’s house she often physically can’t speak for an hour or so as she processes the emotions of the day and tries to calm down. Person B often needs to wear earplugs when out and about and hates shopping as the crowds and lights overwhelm her sensory system. She finds socialising painfully hard and has had extensive support for her ongoing social anxiety. She has to explicitly think about her eye contact, facial expressions and words that she uses every day.

So, which person do you think is autistic? Person B?

The truth is that person A and person B both have autism. In fact they’re the same person and they’re both me. To the outside world I seem like a completely “normal”, functioning member of society.

However, those that know me well know how exhausting this mask is and how much planning and effort goes into every day. This is why people questioning my diagnosis infuriate me. I am and always will be autistic. This presentation is quite typical of females with autism. Don’t always judge on what you see on the outside because on the inside it can be a completely different story.

What does autism look like?

The Relief of Being Diagnosed with Autism

Imagine feeling so exhausted all the time that you can’t get out of bed, you can barely move, you just feel so physically and mentally drained that functioning is impossible… And you feel like it’s your own fault… you’re just lazy and you need to pull yourself together. But then you go to the doctors and after lots of tests you find out it’s just an iron deficiency… You’re not just lazy after all! There’s suddenly a reason why you can’t function like other people, and you have proof! You don’t WANT to have something wrong with you, but you do want the relief and support that comes with answers!!

That’s pretty much how my diagnosis of autism felt for me.

I had spent my whole life knowing I was “weird” and that I just wasn’t trying hard enough to be friends with people. I would be able to go to parties and be super sociable and cope with all the sensory input if I just tried a little bit harder!

I have been lucky enough to be from a family where it was just accepted that I was quirky and that I wasn’t being “different” on purpose. I found parties hard and that was okay. But that didn’t stop my self esteem from taking a battering, because I knew I should be able to do better and I truly believed that I was just lazy or I didn’t care enough.

I had known about autism and Asperger’s syndrome for a while, but when I came across an article specifically about females I felt light headed with relief. Suddenly I wasn’t cold and uncaring. Suddenly there were others like me. Suddenly there was a reason I was quirky and different and most importantly I wasn’t doing it on purpose.

My lovely GP described it as carrying a really heavy coat around all your life and then suddenly having a place to hang it up. I wasn’t alone anymore and my whole life made sense. The struggles I faced weren’t my fault and actually it turned out that I had done pretty well for myself considering I hadn’t had the early intervention recommended for people with autism.

It isn’t that I want to be autistic but as it happens I wouldn’t take away my autism as it is so integrated into who I am and I feel like it helps a lot with my job, it is just a relief, even 18 months post diagnosis, to have answers and know that I am not alone.

The Relief of Being Diagnosed with Autism

Maintaining a Romantic Relationship With Your Aspie

This post is for couples where one person has an Autism Spectrum Condition (ASC). I was inspired to write this blog as I recently read a book that was aimed at the non-autistic partner in a relationship with an aspie. The book (that I won’t name) left me feeling quite disheartened as it implies that it is hard to be in a relationship with an autistic person, and that it will take a lot of sacrifices. It also seems to suggest that people with autism are cold, uncaring and will only function in a relationship if they can physically get something from it, such as money. I can vouch for that fact that this is completely untrue.

This post is based purely on my experience of being in a successful relationship as a person with autism. I have known my boyfriend, Dominic, for 7 years, been in a relationship with him for two years and lived with him for almost a year and a half. Before this I had been in relationships that didn’t work due to my lack of self awareness, and the other person’s lack of understanding. My diagnosis has brought about a hute amount of self awareness, and I feel that this has helped me to create a successful relationsionship, coupled with the fact that Dominic has very similar interests to me and goes out of his way to understand me and accomodate my ‘quirks’.

Here are my tips for being in a healthy autistic relationship:

1. Be explicit about your feelings.

If you just want a casual fling, then state this from the start, we need honesty and if we have gone into this expecting something long term it is easy for us to feel rejected and betrayed. If you realise a few dates in that you don’t want a relationship with the autistic person then TELL them. Don’t drop hints or slowly back away – we won’t get it and will probably make that situation a whole lot worse! I remember once thinking a boy was playing hard to get… He was actually playing “back off you pain in the bum”… Awkward… Similarly, if you’re in love with your aspie or they are making you feel happy/safe/relaxed then say it! Chances are the aspie is sat worrying about how things are going, if you’re interested or if they are being annoying – a simple “You are making me happy by having dinner with me” will help, and will give them tips for the future on how to make you happy (as we often don’t just ‘know’ this stuff as non autistic people seem to). Even now I need constant reassurance from Dominic that he DOES love me and that he IS happy and that I AM enough.

2. Give each other specific praise.

I would imagine this is helpful in any relationship. Dominic tells me every single day that he is proud of me, and names something that I have done that made him proud, for example – he recently told me that he was proud of me for going to work everyday. For most people this is just life, so it means a lot that Dominic takes the time to tell me this as it shows me that he understands that I have daily struggles that others don’t have. I also try to do the same for him that may be taken for granted, for example “Thank you for making my tea, that was really kind.” I’m a little bit rubbish at the whole showing affection side of being in a relationship, but I have learned that giving a compliment like this will at least make him feel appreciated.

3. Planning time apart is equally as important as planning time together.

This one is the MOST important for me. This is necessary as I think it is easy for an autistic person to become completely dependent on the other person – it is in our nature to become fixated, given the opportunity. This isn’t healthy in a relationship and can end badly when the other person needs space, or if the relationship ends, as suddenly our lifeline is taken away. It is good to have other hobbies and friends besides your partner. It works well for me and Dominic as I work in the daytime and he works late evenings, therefore time apart happens naturally. Plus, I am extremely introverted, meaning that my time alone is necessary for me to regain energy and relax.

4. Try to keep at least one evening free together to relax at home.

For me, this is an absolute necessity whether I am with Dominic or not. We have learned that if we have a busy weekend planned – for example, if we are at a party on Friday night and a famity meal on Sunday then it is absolutely compulsory to keep Saturday evening free to relax at home. The pressure of socialising, the change in routine and the sensory overload that occurs due to something as simple as going out for tea can leave me completely exhausted for a whole week. If we don’t plan in at least one lazy evening, then I will either; completely shut down and be unable to speak, move and even be in the same room as another person, or, I will turn into the Hulk of the aspie world, flying into a rage about every noise, smell, light or other sense that I experience.

5. Set clear arrival and leaving times, and learn to realise when your aspie has had enough.

It is important to me that I know how long I need to be ‘on’ for, otherwise, I will become edgy wondering how long until I can get back to the safety of home. Chances are, I do not want to be at this social engagement at all, but we compromise by agreeing a leaving time so that I at least have a time to work towards! If it gets past this time and we are showing no sign of leaving I will start to get very anxious and overloaded. Dominic is able to recognise when I have had enough now, for example, I will often become irritable and I stop being able to process spoken language properly as I can’t filter out the noise, and this means I need to leave NOW.

6. Try to learn not to take things TOO personally – Both of you!!

Say I’ve had a hard Monday at work – a particularly difficult parent, for example, I have then come home from work to find that my usual BSL class is cancelled, then I’ve had to go to my physio appointment (which I HATE – why do they need to actually touch you?!), then I have had to call in Asda for some milk on the way home where I bumped into someone I know who decided to stop and talk. This probably isn’t a particularly bad day for most people but to me it is a nightmare. When Dominic gets home he might walk in and try to give me a hug to make me feel better (apparently this is human instinct… Whaaat?) It is likely that I will tell him to get off me, and be unable to even acknowledge him for the rest of the night. This can appear extremely hurtful, especially if he has had a bad day and needs affection. Thankfully, Dominic has learned that this is how I need to cope with anxiety and I know I am very lucky that he understands. However, I have also had to learn that when HE has had a bad day, I need to show him more affection, or that if he is feeling grumpy, I shouldn’t take it personally if he snaps at me or doesn’t respond to me trying to make him laugh. That is just how HE copes.

Finally, the most important thing for me has been finding someone who is a mixture of kind, gentle, patient and most of all fun. Most aspies will have an immature or unusual sense of humour. It is so important to me that I can be my immature, giddy and quirky self, without the constant fear of judgement or rejection.

Maintaining a Romantic Relationship With Your Aspie

10 Things I Wish People Knew About My Asperger’s Syndrome

I’ve seen loads of these knocking about so thought I’d do one of my own, to dispel misconceptions that a lot of people seem to have…

1. It looks like I deal with change really well.

Okay, so we were going to the bar in town and now we’re going to the bar near the cinema? Yeah cool I’m up for that. NOT. Yes I’ll probably go with it and seem like everything is cool. But I’ll also probably be panicking inside because that isn’t the plan! I will probably get home and hide under my blanket and I’ll probably be terrified of going out with you ever again in case you change the plan again. No offence like.

2. Everybody has their own little quirks and preferences. It DOES NOT mean “everyone is on the spectrum somewhere”.

There are no words for how much I hate this phrase! You might be quiet, quirky and downright strange but that doesn’t equal autistic. Autism is a neurological disability defined by a very specific set of characteristics. You don’t like eye contact? Not necessarily autistic. You don’t like small talk? Perhaps you’re just shy. Not everybody is a “bit autistic”.

3. I find eye contact almost painful… But I still do it.

A common phrase is “You can’t be autistic you make eye contact!” Yes I do. It has taken me years and years to master it and it does not come without a price. Eye contact feels so painfully intimate to me and I have to force myself to occasionally glance at your eyeballs just to prove I’m listening to you. How does that make sense? You listen with your ears not your eyes!

4. If I’m going on and on and on about the same thing please tell me!

I know I do this. I have strong interests in autism, BSL and speech therapy. It’s likely that if someone mentions one of these I’ll go on and on and on until their half asleep. I’m aware that I do it, I’m just not aware at that second that I’m doing it! I would rather you tell me than let me bore you to death (because I will, quite happily!)

5. I am not just shy!

So many people think that I’m just shy. Let me reassure you that this is not the case. I might be shy at first yes because I know socially I’m not that up to speed, however, when you’re perfectly comfortable and still have no idea or interest in small talk it isn’t shyness, it’s a problem with social communication.

6. Just because I smile and nod does not mean I understood you.

I’ve recently realised just how literally I take things! Metaphors and stuff that you learn explicitly I’m generally okay with, but if you say you’ll be back in five minutes then you better bloody had be! If I read an article saying the world will end next week then I WILL believe it. When I moved into my flat and my boyfriend pointed to the boiler and said “That’s our water in there” I spent ages trying to figure out how to fill it back up when it empties… I’ve been described by many people as quite naive.

7. I have a good job as a speech and language therapist, I live with my boyfriend and I really seem quite independent… Don’t be fooled.

I really don’t think I could ever live independently. It sounds sad but you don’t really notice it when you live with people who have just made it part of their lives to help me. I’m lucky in that way. I have no idea how to pay bills or set up direct debits. I couldn’t manage money if you paid me (hahaha). I sometimes forget to eat or become confused filling in important forms. Times like this are when my mum steps in to guide me and it’s such a natural thing for her that this is probably why I went undiagnosed for so long… For us it has always just been normal!

8. I appear to have good social skills, and yet there are times when I physically cannot communicate. At all.

I might have had a hard day at work, or have seen too many people, or be suffering sensory overload. Maybe there were unexpected changes to my day. When this happens I completely shut down. I am unable to engage with people at all. I become mute and completely helpless. Eventually I will be able to send a text saying that I need help. This is a recent coping strategy. Previously these episodes would last a lot longer and be much scarier and more isolating for me.

9. I really have no idea about facial expression so I generally just smile and hope for the best!

People always comment on my constant smile. It doesn’t necessarily mean anything. I could be having a major anxiety attack or be really sad and I’ll still smile. I don’t want people to think I’m miserable or unapproachable so I resort to just smiling because I really don’t know what else to do with my face. In all fairness I am a generally happy person so you can just assume I’m happy if you want like.

10. I get flappy when I’m happy!

I’m nearly 24 and today, upon finding out I had got the job I wanted, I spent a solid 10 minutes in my car flapping and flicking my fingers before I could drive safely! It’s like an energy I need to get out and it helps me to regain control of my feelings. I generally try to do this in private but sometimes it accidentally pops out if someone makes me laugh or tells me some good news. Don’t be embarrassed, embrace the stim!!

So there you go. 10 things that make me me.

10 Things I Wish People Knew About My Asperger’s Syndrome

Blackbird.

“Blackbird singing in the dead of night,
Take these broken wings and learn to fly…”  
Paul McCartney (The Beatles) 

‘Blackbird’ was written by Paul McCartney about the fight for equal rights for black people in the US. I related to this song from the moment I heard it, before I’d even heard of Asperger’s Syndrome. Firstly, as a rule, blackbirds don’t tend to come out and sing at night, so, like me, this bird was clearly a bit of a weirdo. Secondly, since I hit puberty my life has felt a bit like learning to fly with broken wings. Things that come naturally to most people, such as making small talk, joining in at parties and generally being a fully functioning human being, just do not come easily to me. I have spent years trying to explicitly learn how to do these things through observing other people, reading and copying what other people do. It has very much felt like trying to fly with broken wings.

Finally, it feels like I’m finding my wings. If you had told me a year ago that last night, I’d have spent from 4pm-9pm in a dressing room with a group of people, chatting, joking and generally enjoying myself, then performing ON A STAGE with the lovely Warrington BSL signing choir, AND THEN going on to a party, I’d have laughed in your face. This would not have happened this time last year. From around 11 years old, up until around 6-9 months ago I was suffering from such debilitating anxiety that I would barely leave the house.

Granted, today I spent the majority of the day asleep, wrapped in my favourite blanket and not interacting with other human beings as much as humanly possible, but now I know that this is just me and that’s how I cope, it’s okay! My diagnosis has helped me to find strategies hat help me to cope, and to realise that the physical and mental exhaustion following socialising is usually so worth it!

There are lots of reasons I get so incredibly exhausted from socialising, the main one being anxiety. For me, the social anxiety begins the very day I make the plan, whether it’s the day before, the week before or a year before. From this day I worry about what to wear, what to say on arrival, who will be there, will I make an idiot of myself?? On the day of the event this escalates to “I’M NOT GOING ITS SO STUPID WHY DO I HAVE TO GO IT ISN’T FAIR!!” Then I stress about being late and often end up sitting in the car for half an hour before I go in (because you know, that would mean EXTRA socialising!)

So now that I’ve made it into the event there is the obvious social anxiety trigger… PEOPLE. My conversations to most people probably seem pretty normal (if a little quirky and awkward), you probably wouldn’t guess that I have autism. But if you looked inside my head, that is a whole different story. I’m wondering what to do with my face, do I need to move my hands at all? Am I sitting properly? What does my voice sound like? I hope it’s okay to smile (facial expression isn’t natural to me so I generally try to smile because I’d hate for people to think I’m angry or upset). What do I say? Is what I just said inappropriate? Can I leave yet?!

Then there is the anxiety of leaving… Do I hug you? What do I say? Can I just slip away or is that rude? Then the anxiety afterwards, did I do okay? Does everyone think I’m weird? Oh god did anyone really think that joke was funny?

And on it goes…

On top of this is the sensory overload… People talking over each other, loud music, glasses chinking, the smell of perfume/aftershave and air freshener all together, the uncomfortable clothes that scratch and hurt my skin. The flashing lights… So really it’s no surprise that I get so exhausted.

Since my official diagnosis I have learned that in order for socialising to ‘work’ for me I need to keep it to a minimum, relax beforehand and save AT LEAST a whole day of doing nothing afterwards to recover. I never used to accept this. But now I can see how totally worth it this is. There are still times I literally cannot face socialising. And I’ve learned to be okay with this – I’m surrounded by such loving and positive people that they just ‘get it’.

I truly enjoyed last night. I spent time getting to know some genuinely lovely and inspirational people, and I feel like a better person just for being around them. Today was spent in recovery, and that’s okay because now I’m ready for the week!

Blackbird.

I was born with autism – A poem

I was born with autism,
You probably can’t tell,
But if you lived with me you’d see
I hide it really well.

I was born with autism,
A disorder of the brain.
My senses like to torment me,
Loud noise drives me insane!

I was born with autism,
It affects the way I think.
My feelings do not match my face,
They just aren’t quite in sync.

I was born with autism,
Be careful what you say.
Don’t tell me that you’re feeling blue,
Or that you’re going grey.

I was born with autism,
I sometimes get things wrong.
Like not saying the right things sometimes,
Or talking for too long.

I was born with autism,
I like to keep routine.
Like eating the same things each day,
And only wearing green.

I was born with autism,
It’s really not that bad.
Some people think that I’m a laugh,
And some think I’m just mad!

I was born with autism,
Didn’t know til 23.
I always knew that I was weird,
And now I know I’m me!!

I was born with autism – A poem

The Day I Realised I Was Different – Asperger’s Syndrome

imageI was 11 years, 5 months and 6 days old when I realised I was a freak. I know this because it was Tuesday 2nd September 2003, and my very first day at high school. I was SO excited to start. Primary school had been an awesome experience. I had been in a small community primary school where everybody knew each other really well. Me and my best friend, Joey, had been quirky and cool, and that had made us popular… So high school was going to be even better! Sure, Joey wasn’t going to be there, but I had other friends from primary school there so that was okay. Anyway, as I was saying, it was on my first day that I realised I was missing something.
The weather was cloudy but dry when my mum left me in the ‘quad’ where I would be met by my form tutor, Mrs. Burns, and taken to my form room. On arrival we were sat in alphabetical order and told that this is where we would sit during registration for the whole year. I was sat between a pretty girl called Ruby and a boy called Ben. This was good. I liked the name Ruby, so we would definitely be friends. After completing the register (and a mini nervous breakdown on my part, waiting to say ‘here’ in front of everyone when my name was called), Mrs. Burns told us we could sit and talk quietly to the people next to us and get to know our classmates before our first lesson. This is where it all went wrong. I sat in complete silence as all the other boys and girls began chatting to each other, about their summer, where they’d been to primary school, what they’d eaten for breakfast and whatever else ‘neurotypical’ children like to talk about. I sat in silence with a thousand questions in my mind… How did they know what to say? Why did they know what to do and when to laugh and when to nod? Who had taught them this? What had I missed?!
This is the moment that defined a complete change in my life. From this day my quirkiness was no longer cool… I was just the weird girl who walked funny and didn’t really say much.
Academically, high school was great. The teachers had no issues with me, I was a ‘good girl’, I did my homework and got good grades. Socially, it was my living nightmare. College was better as by this time people had matured and began accepting people as they are, and I’d had all of high school to learn how to act ‘normal’.
It was at university when I realised why I had felt so lost on that first day of school. This is because at university I learned about Asperger’s Syndrome and this is when things finally started to make sense…

The Day I Realised I Was Different – Asperger’s Syndrome