(N24) Sleep/Wake Times

My sleep pattern isn’t all over the place like it was when i was younger. I have a routine when it comes to bedtime and waking up. These are pretty strict, because my body would love nothing more than to revert back to doing what the hell it likes. Which would mean i suffer in my life’s quality of living.

Bedtime!

bedtime_stars_by_rockinrobin-d4f78kz

I resign myself to my bedroom at about 9pm. I can be listening to music, reading, watching stuff on my phone or tablet, anything, aslong as it’s confined to the bedroom. I take my sleep medication at 9pm too. At about 12am, the lights go off and i must try to get some sleep. No checking the phone, no looking at stuff on my tablet pc, no reading, etc. I can have music on low, for a little while if i find its helping. The only time i’m allowed to use my phone is if i’m experiencing a bit of anxiety and need to make a note of something.

insomnia

If i can’t sleep before 3am, i get up a little. Have something to eat, and potter around the bedroom again till i feel ready to try to sleep again.

Wakey Wakey!!

My first alarm goes off at about 8am. This will be turned off 9/10! Very rarely will i feel ready to get up at that time. The next alarm is at 9am, and then consequetive alarms at 10am, 11am and a last one at 12pm. At 12pm, i have to get up, no matter what (unless i’m ill) and try to get on with the day. 12pm is my cut off point for sleep! On average i will wake up about 10 or 11ish.

how-to-disable-vibration-when-alarm-goes-off-on-iphone

 

 

I’m not quite up and raring to go when i wake up. It takes me a little while to come to. Basically, i can’t see. Everything is blurry, it’s like trying to see through clingfilm.

SONY DSC

And i feel like i’m experiencing intense G force on my body. So i will feel like my head is in a vice and my stomach will be whirling around before plummeting.

hungover-in-bed-720x400

It’s not a nice experience basically, but aslong as i’ve had a good number of hours sleep, it does wear off.

During this time, the allure to fall back asleep is strong in its game! So this is the time where i start looking at stuff on my phone. I will look at buzzfeed, facebook, livejournal and lastly my emails. I might even engage in messaging people on whatsapp (for the record, theres nothing i love more than waking up to morning texts from someone, wishing me good morning and to have a good day!).

Once this is complete, then i am ready to get up, get washed and dressed, something to eat and to get on with the day at hand!

2bf9bafcd402598f946638919b7f1502_l

(N24) What is N24?

Next disorder up, is the elusive and incredible rare

Non-24 Circadian Rhythm Sleep Disorder!! 

 

clock

What Is It? 

That is the big billion dollar on so many peoples lips, when they ask me. I will answer this in two ways. I will give you the in-depth answer, and then the lamen answer which i fall back on, just to answer the question quickly when it’s asked.

The In-depth answer is: We all have a circadian rhythm which regulates not just our sleep/wake pattern, but also regulates out appetites, hormones, body temperature, etc, when they’re supposed to be released. Which is why you get start to get hungry around certain times of the day, and why women and even men, can get grumpy at certain times of the month.

My circadian rhythm is off. It works on a 27 – 33 hour day, naturally. Which means that when i don’t force myself to wake up at a specific time – using an alarm clock for example – i will sleep for about 12 – 15 hours, and be awake for 15 – 18 hours.

Here’s what it looks like:

Monday – Wake at 9am, Sleep at 12am Tuesday

Tuesday – Wake at 12pm, Sleep at 3am Wednesday

Wednesday – Wake at 3pm, Sleep at 6am Thursday

And so on, advancing by about 3 hours (based on the 27 hour day)

This is why the disorder is called Non-24, because it exceeds the 24 hour day. Most people, on average do have days that are slightly longer than 24 hours – but it’s still within the normal ranges that it won’t really have much of an effect on your day to day life. Mine does.

The lamen explanation?

I have a wonky body clock, which means i can’t get up in the morning.

Done.

This explanation works because it’s simple. We know what a body clock is, because so many women are battered by the phrase at some part in their life, when it comes to baby making. So we have some kinda of understanding of what it is, although very basic. Also, ‘can’t get up in morning’, very self explanatory.

And to answer the common questions. No it is not sleep apnea. No i do not have narcolepsy. No it isn’t insomnia. No i am not a night owl.

Thank you.

Talking About Autism

I was diagnosed with Autism when i was 29 years old. So less than 2 years ago. The first time it was brought up was from a discussion i had with a friend of mine. Her sister had just been diagnosed with Autism, and the reasoning for this was her parents caught her stimming, the same way i do.

This caught my attention, because i knew what i do, is not normal. So to hear of someone else doing the same thing, was intriguing. I started to do a bit of research into Autism, and point for point, i was starting to make a lot of sense, with the various quirks i have, or used to have from what i was younger, that set me apart from all my peers. Not just some…all!

I had already been picked up by a youth worker that i was behind in my social skills, for my age. So was allowed to join a youth group, and as predicted, i had no problems fitting and settling in. I felt it easier to relate to these people who were younger than me. It helped greatly in learning and improving my social skills, and helped me expand my boundaries.

When i first broached the topic of Autism with people, for the most part it was met by a lot of negativity. Because i’m seem to function very well, people then tell me they don’t see it. They don’t notice it.

The thing with Autism though, is that it effects everyone differently. You can’t compare one autistic person with enough and expect them to be the same. Such is the case with a friend of mine, who is also on the spectrum. In some ways we are very alike, but then in some other ways we’re the polar opposites, by how Autism effects us.

But because i come across as ‘normal’, it does make it exceedingly difficult in telling or talking to people about it, and the challenges it poses in my daily life.

When i do tell people, its either met by people saying they don’t notice it in me. That i seem normal, and then proceed to ask me the worst question to ask an autistic person

‘So how does it effect you?’ 

How can i answer this, when i have no way of knowing what it is like to – not be me?! Autism isn’t something that people contract. It’s not like they go from being a normal, regular person, to then something else. We’re born this way. We have nothing to compare it to.

It’s a bit like saying to a woman, what’s it like being female?

Encourage discussion, but think about what you’re saying or asking. Don’t grill us.

Another common reaction is people changing how they treat me. They start to be overly cautious, or start treating with kid gloves or like a child.

Firstly, research Autism yourself. If there’s some parts that you’re curious on, then do ask. Secondly, don’t treat us as any less of a person than we are. If we seem unsure or hesitant with something, stressed out or upset, talk to us. Don’t just assume that we’re going to have trouble with something, because it’s seen as being stereo-typically autistic.

Stereotypes

The most damaging part, is the media, the way it stereotypes autistic people. We’re either seen as being child like, dumb, unable to take care of ourselves, can’t look at people, rocking back and forth, non-verbal and/or screaming and having tantrums, especially if they get touched by someone.

Or, we get seen as someone rude, eccentric and somewhat of a mad genius. Really good at math, and a walking encyclopedia of facts. We’re depicted as being loners, outcasts, unpopular, constantly bullied and anti-social.

Both stereotypes are very damaging. Pretty much due to that most people will form an opinion on what autism and an autistic person is like, based on these stereotypes from the media.

The spectrum is actually more broader and varied, in how autism affects people and what we are like as people. What i hope to see one day, is for this to be portrayed more in films, books and on television.

In Fashion

Another annoying attitude is that, people read/hear that the rate of autistic diagnosis is on the increase, and this is because more people think they’re on the spectrum. That it’s some ‘in thing’, fashionable and ‘kool’.

The real reason the rate of diagnosis is on the up, is actually better awareness and detection of it. The varied ways it can display itself.

I’m not ashamed about being autistic, but i do find it challenging. Mostly due to the above mentioned reactions i and others have receive and do receive on a regular basis. If this could change, then perhaps life can get a little bit better for autistic people like myself.

 

(Autism) Dating & Relationships pt.2

Dates

It’s always nice to be asked on dates. But at the same time is isn’t. For the most part it’s got very little do to with the other person, and a lot to do with myself. It puts pressure on me to be ‘socially ready’ on that particular day. A lot of anxiety will develop, down to minute i’m due to meet this person. Don’t pester or pressurise to meet up and go out on a date with you. If i say i’m not ready, then be patient. You can try again, but give it some time. Most likely when i am ready, and you haven’t asked me again, i will tell you that i’m all good to organise something with you soon.

Meeting someone for the first time, as i already pointed out, is very difficult for a person on the autistic spectrum. Dates are even worse, because the wrong bit of body language, saying the wrong thing, and not being aware of it, can lead to misunderstandings and ultimately, hurt feelings.

The location is quite crucial too. Because it needs to be somewhere i know, and somewhere that is quiet and comfortable. So when going on a date, if its a date with someone i met online, things can get tricky.

When i go out with a friend in general, i know this person and i trust them. And i will find it easier to speak up if i feel uncomfortable in some way. But with someone i don’t know, and its a date, there isn’t that same level of trust involved, and so i most likely won’t speak up, and spend the rest of the date, tense and wanting to go home.

Again, it most likely won’t be a reflection on the person i’m with, but more on the surroundings and on the circumstances of that time.

What to do.

Keep it simple, keep it local and keep it short. Generally once the first couple of dates are done and dusted, i will feel more relaxed and be able to enjoy spending more time with that person. I like to keep dates to a minimum before beginning a relationship, because dating, it gives a element on uncertainty, or instability. Which is something us autistic people struggle with, we like set roles, routines, boxes, etc. Dating is similar to purgatory, where you’re more than friends…but not quite bf/gf (of gf/gf, bf/bf, etc). So it’s a blend between the two, which is filled with a lot of grey area and figuring out how you fit together and compatibility, feeling being developed..or not being developed.

Purgatory!

3 months minimum

From past experience, I’ve found spending 3 months getting to know someone from afar (texting, calling, video chats, etc), helps with this. Because by that time you’ve got a fair indication on this person, who they are and if they’re compatible with you. So when you meet up, it’s literally just putting the last piece into the puzzle. So it cuts out some of that ‘grey area’, because by then, hopefully you’d know if you’re compatible and how much you like each other. It also means the majority of things are done in a written format, so there’s not chance of giving conflicting body language or misinterpreting the other persons. Emoticons can be extremely helpful by the way!

Reassurance

Anxiety is rife with autism. And dating is even worse for that! So autistic people might require a degree more reassurance on things than others. Try to be patient and understanding, i understand how frustrating it might be.

Having the reassurance in words, rather than hugging, kissing, etc, is better. Because it’s something we can refer back to, instead of asking you over and over, on the phone or face to face.

Most of your communication with someone like me, will be mostly text based. Because it limits misunderstandings and miscommunication. Personally, i enjoy texting someone throughout the day. If someone has a busy day or can’t text at work, i do ask of them to let me know in advance, because otherwise i’m there trying to figure out why they’re not texting back like they normally do. Which can lead to tension and stress, next thing you know you have a stressed out Jacy on your hands, asking if everything is okay, etc.

I should point out and stress here, that i’m not saying, if someone hasn’t text me back in a few minutes, i’m there jumping up and down. It’s more, if its gone past the half hour or hour mark, i start to get a bit concerned.

Again, consistency is it’s own reassurance. If you’re consistent in your behaviour, feelings and actions, the anxiety will be kept to a bare minimum. Think of me, or people like me, as your own personal litmus test. If something is wrong, it will show.

Break Ups.

In the past, i used to take break ups pretty badly. Now that i’m older and survived many a break up, it’s not so bad. I find that breaking up or being broken up with someone, is better and easier via text messaging. Many seem impersonal and a cowardly way out, but it means i can distance myself, that i can process things easier. With things like that, i wish to do it privately and on my own.

I do try to remain friends with people after the relationship has ended. Because, with someone people, although having a relationship has not worked out with them, having a friendship could. There are some exceptions to that, if they have hurt me or treated me badly, i will find it best to let them go completely.

Some, decide they don’t want to be friends, and again, as sad as that can be, i understand. What i do ask, is that you let me know that, and encourage a discussion about it, so that i can fully take it on board. Don’t just stop talking, without any notice at all. Because not only is that disrespecful, but also unfair. There has been the odd occasion where that has happened and my poor friends have borne the brunt of me trying to decipher why, and what went wrong, etc. Over and over. Autistic people tend to have obsessive ways of thinking, much to our own detriment. So please, don’t do that to us.

 

(Autism) Dating & Relationships pt.1

Dating and relationships in itself is quite a challenging thing for anyone. For myself and other autistic people, it takes the challenging nature of it to the next level.

Friendships for me, are quite straight forward. The intimacy and closeness that is typical, with even a very close friendship is still less intimate and close, than in a relationship. I feel in friendships lines and boundaries are more apparent and i can keep parts of myself private. Relationships require you to be more open with the more private areas of yourself – physically, mentally and emotionally. Of such, lines and boundaries found in friendships, either disappear or blur.

Many people on the spectrum faces large problems such as extortion and different types of abuse, because relationships and dating is so complex, we struggle between what is right and wrong. Ultimately, when this happens, we frquently end up victim of something negative and unhealthy with someone.

That’s not to mean it’s all doom and gloom for spectrumites when it comes to dating. There’s LOADS of us who are in fulfilling, commited relationships, embracing the single life, or happy with something ‘other’.

Complex Expectations

Sometimes we might try and emulate things we’ve seen in movies or on tv, as a way of learning some of the more complex social norms between people. The downside to this, is that what we see in movies and tv, isn’t accurate to what is expected in real life. So we sometimes face many disappointments or encounter many misunderstandings.

There are no real set rules to relationships and it seems to be the ‘norms’ are forever shifting and changing, making things more difficult for people like me.

The best thing to do is you are dating someone on the spectrum is to lay down your expectations, what you want and need from them, in the early stages. This gives us some guidance of what is expected of us. And encourage us to do the same, to respond with our expectations and what we want and need from you. This in some way goes against what normally happens in a relationship between people, as its normally conveyed sublities in conversations, subtext, reading between the lines and other non verbal communications that you guys seem to master, and i’m at a loss.

Laying it on the line, helps to cut out a lot of misunderstandings, which could other result in hurt feelings and confusion later on down the line.

Take to your spectrumite about relationships and dating, and the social norms with it, and see if theres clarity needed for them. This helps with building a bond and building trust, because you then become someone whom we can talk to about things we may not fully understand or know. And from the other side of things you get to learn a lot about the world from a different sort of eyes, which could provide different perspectives or views on things you’ve never given a second thought to before. We can be very interesting and entertaining in the way we think and view things.

Abuse

As i mentioned before, many people on the spectrum will at one time or another experience a form or forms of abuse. We’re not always aware of what is right or wrong, and so rely on others to tell us what is right and wrong. If this trust is placed in the wrong person, we won’t know and big problems can occur.

If you suspect that an autistic friend or relation is in an abusive relationship, be aware they most likely won’t know. If approached about it, they may dismiss it and talk to their partner about it and believe their perspective more as they’re someone they also trust. If they are aware of it, it can still be difficult to get it to stop, as change is something we struggle to cope with, so may end up staying, just to avoid change. This won’t make sense to many i know, but from someone who has been in abusive relationships in the past, a lot of things don’t make sense.

Instead, talk to them about relationships, perhaps even about your own and what you and your partner are like and do together. This can help show them what it’s meant to be like. Obviously not exactly alike, but showing respect, love, kindness, acts of caring, affection, etc. And how these things manifest themselves – such as offering to take your partner to a job interview instead of them getting the bus, doing the washing up because they’ve cooked dinner, encouraging them to enter into a race they’re not sure they’d be able to complete, etc.

And then talk to them about what unhealthy relationships are like, and why someone shouldn’t be in one and what they can do to come out of one, and what happens afterwards.

This gives guidelines, but it’s still respecting us to make our own choices. Be wary, and if things look like they’re escerlating, then do speak to people of more authority, this could be health care providers, charities that deal with domestic abuse, and of course the police.

When you are dating someone who has a past of being abused, talk them about it, about what happened and how has it affected them. Be affectionate as they talk and show sympathy, as it is a difficult subject. Make sure it’s somewhere they’re comfortable and there’s no distractions around. Give them your full, undivided attention.

Consistency

Ugh, i cannot stress this enough! Be consistent! Be consistent in your attention and affections. We will notice any differences, no matter how slight and we will highlight to you very bluntly. Don’t disregard it, but explore it. Have a proper discussion about it, and try not to be too defensive. We’re not out to start an argument, we’ve just noticed a change and don’t like it. It’s as simple as that. But because our minds are defaulted to being quite ‘negative’, we may go to negative reasoning of what these changes might mean.

Don’t leave unanswered calls or texts for hours on end, because that just causes anxiety and tension. Seriously, i start obsessively checking my phone every 5 minutes when this happens and these feelings can grow in intensity and it’s just…horrible. So please, please, don’t leave too much of a gap.

PART 2.

I’ve had to split this entry up into parts, because it is such a big subject and there’s lots of cover. Mainly because there is actually many resources out there about dating autistic people. And because it’s a very complex subject. Part 2, will cover break ups, dates, reassurances and some other bits and bobs. 🙂

 

 

Time With Company vs Time Alone

Contrary to popular opinion, i do enjoy spending time with people. The amount of time is quite short, and it does tend to be few and vast in between meet ups. This isn’t because i don’t enjoy spending time with my friends, but more than i value my alone time too.

Spending time with people, isn’t a relaxing thing. It’s a task. A fun one, yes, but it does require effort and considerable amounts of energy. Then take in all the other facts I’ve previously mentioned in this blog, and perhaps you can see why i tend to spend most of my time away from people. I prefer talking to them via text or a phonecall.

In the past this has bothered some people, and consequently friendships have drifted apart. But those who have stayed on board, I’ve come to really treasure.

I think with some people they require spending time with people on a regular basis. Say, meeting them on the weekend, every week or at most 2 weeks. Whereas i can quite happily go for months without seeing anyone.

I do feel bad sometimes, when i’m invited to things and i know i can’t go. Either because it’s too far, time of day making a journey tricky, it’s an activity that would make me uncomfortable or simply i can’t afford it. Consequently the invites become less and less, and i start to take a voyeur role in my friends lives. I can see, through photos, the exciting, fun stuff they get up to with other people. But i’m never there. Never in the photos.

It’s difficult, because there’s two sides of me in constant conflict. The fun-loving, social side to me who longs to get involved and experience things. Then there’s the other side, who would rather be alone and not be involved, because of the things I’ve listed as to why i don’t go.

Anxiety and Autism have a tendency to go hand in hand. They’re bosom buddies in the world of disorders. So, expanding your world as an autistic, is somewhat challenging. But with support, effort and determination – it does happen.

Too Much Time Alone

Sometimes i can get sucked out of this world, and too much into mine. Which while at first isn’t too concerning, it can over time create problems. I become more stubborn and rigid in the things i do, and avoid doing anything other than those things. I become more anti-social, withdrawing from people more and more. This is unhealthy not just for me, but for anyone. It leads to mental health problems, such as depression, agoraphobia, anxiety, etc.

Hounding me to get out and to do things (within reason), although i will find a absolute annoyance, will in the long run really help me. Literally dragging me out to things and places are good, as long as it’s respectful of what i can and can’t do.

(Autism) Working

Finding employment when you’re autistic, can be tricky as there’s lots of factors you need to consider. Such as the working environment, the people you’ll be working with, the role itself, the journey to work and the hours you’d be obligated to do.

Again, with Autism, it isn’t a case of one size fits all. I enjoy working with kids and with the public. I enjoy variety and dealing with people on a one-to-one level. But at the same time, i can’t work in customer service – i.e. Retail. I think it all a bit overwhelming, and am suited more to a office or classroom based environment. But i know, some autistic people enjoy working in retail, or find it difficult working with children.

Interviews

jobinterview

When i’ve managed to bag myself a job, i’m frequently told what such a good employee i am. But the process in which i go from being unemployed, to being employed can be challenging.

Not only am i trying to compete with people who don’t have disabilities. But i’m also competing against people with more experience and qualifications than myself.

Asides from that, being interviewed can be a bit daunting. Because it’s meeting someone, or in some cases multiple new people! And i’m having to ‘sell myself’, despite struggling with correct amount of eye contact, displaying confident, relaxed body language, and actually coming across confident in what i’m saying.

With this struggle, i receive a lot of rejections, saying that i wasn’t confident enough. So now, i let the employers know, before i’m invited for an interview. Just so that they’re aware, and hopefully not misinterpret my body language, etc. So far, this seems to be working better for me.

Settling in

I had a temporary christmas retail job a few years ago. And in the first week, i had a work review. The first week! No one else that i worked with, that had the same job as me, got this. And i was told that i seemed unenthusiastic, unmotivated, unsure and hestiant when tasks are set for me and that i wasn’t pulling my weight.

This was just after 3 days being in the job. 3 days. They knew i have autism and, to be honest, like everyone else i was nervous and it takes time to settle in. And i responded with such. Which they noted down and nothing else was said. Yet it was kept in my file.

I had to sign an agreement of things i was going to do to improve myself.

Just to remind you this was after 3 days of being in a new job.

In my current job, as senior classroom assistant, i didn’t have any of that. Instead it was understood that, it would take me a little while – like anyone else, to settle in. And that mistakes would be made, but that i would learn from them. 5 months later i got a promotion.

The lesson that employers can learn from this, when employing autistic people is to give them some time and space to settle in, to get to grips with things. This may take a little longer than other people, but it well worth while. Because when we’re settled, we excel in the role and tasks set us. Frequently beyond your expectations of an employee.

Bullying

workplace-bullying-001

Lots of autistic people experience bullying in the workplace. We tend to be an easy target. We can frustrate or appear confrontational to people, we can come across as blunt and insensitive, which can lead to conflict between us and others. But most often that not, we get bullied because we’re seen as anti-social and weird.

We can take things literal and people can also find it easy to boss us around.

All these things are unacceptable. And all of these things i’ve experience first hand.

In half of the cases they’re not dealt with properly and it has gotten to the point where i’ve had to quite that job. In the other half, management has stepped in and got it sorted. The other half should be over half!

Employers please be viligant of bullying in the workplace, and make sure that your most vulnerable employees aren’t secretly being taken advantage of, otherwise you could wrongly, lose some valuable employees.

Uniforms

 

Ugh, me and uniforms do not go well together. Polo shirts are fine. Shirt, shirts, no! Work/tailored trousers, dear god no.

Being an autistic person with hypersensitivity to touch, i find some fabrics irritating, uncomfortable or in some cases – painful.

Please be accomadating of clothes that you’d still find acceptable for me, and those like me, to wear. It may not be what you expect everyone else to wear, but still would be within reasonable parameters. Such as dresses, black plain leggings, black smart jeans, plain smart tops, etc.

Attendance

Juggling multiple disabilities on a daily basis can be tricky, and if one of them is out of alignment, it can cause knock on effects with the others, so much so, i can’t cope and will need some time off to get myself back on track.

This can be triggered by various things, such as;

  • Illness
  • Stress

Ilness can’t be helped. And if i’m unwell alot, then it can mean that i’m stressed in some way and it’s comprising my immune system. The two do seem to correlate most often.

So if i’ve been having a lot of time off and it’s getting concerning. Be cautious. Because bringing it up as a concern can add another factor to stress and in a lot of cases becomes all-consuming, so much so i crumble and leave the job. Which can be a real shame, especially if it’s a role i really enjoy.

What can be done?

You can mention that i’ve been ill a lot recently and you were wondering if there’s something wrong. Am i experiencing any work related stress and if so, to talk about it to see if there’s anything that can be done. This may mean amended duties, times and/or days i’m working – so be prepared for that, as it does tend to fall into those camps. Sometimes though it’s people. Someone may be causing me stress. And it’s not always easy to talk about that. I’m quite a sensitive person, and try to avoid conflict as much as possible and i don’t want to offend anyone or make working relationships strained. As such, i tend to not speak up about things that may be bothering me about a person. But creating a positive working relationship, one with trust and openess can help.

Sometimes it may just that i’m going through a spot of poor health. Be aware, understanding and patient. It will pass, and making things as easy as possible will pay off in the long run, as an employee, if a employer treats me well, i give back 110% quality of work. Every time.

Social Aspect

I’m quite rigid in how i see people, in their set roles. Personal friendships are always kept seperate from work colleagues. When attempts are made in meshing the two together it doesn’t sit well and creates tension in me. I don’t mind chatting with people about our lives. But when it comes to ‘hanging out’ outside of work, i tend to avoid.

Christmas is the worst times, because of work parties. Oh and halloween, because of dressing up. I don’t dress up. You can tell me it’s for charity, but it’s still not going to happen.

I still appreciate being invited, as it makes me feel included. And you never know i may get myself in a position where i’m comfortable with saying yes, i will come along.

– This just applies to group things. One to one ‘drinks’ with someone will always be answered with a no. Always.