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Autism is Varied

Autistic people share certain difficulties, but being autistic will affect them in different ways, Autism is a spectrum

Put a group of autistics together and they are bound to get along, WRONG!  The thing with autism is that it is so varied we can end up clashing.  One autistics need could be another autistics meltdown trigger.  For example some autistics needs peace and quiet, but at certain times too much silence can be bad for me, giving my OCD thoughts and anxiety a chance to take over.  I used to be part of an autism support group on Facebook.  It was fine for a couple of months, but people started disagreeing on various topics, getting more and more heated in debate.  In the end it led to arguments and people getting upset, so I left the group.  If autistics struggle to get along with other autistics, how an earth do we expect to get along with non-autistic people?

Actually I sometimes find non-autistic people easier to get along with.  They can be more willing to except difference and change, more able to understand that people’s opinions may differ from their own, less easily upset and stuck in their own way of doing things.  An autistic person may obsessively tell me about a hobby or interest to the point I am almost at meltdown and have to find an escape from them.   I find some non-autistic people very hard to get along with, but no more so than some autistics.  Autistic people like everyone else have personalities so we will not all get along.

The National Autistic Society in the UK campaign for more autism friendly services and shops.  The trouble is what is more autism friendly for one autistic may not be for another.  I do wish other people understood autism better and were more excepting of our needs and differences, but I feel the term ‘autism friendly’ can be misleading.  It assumes that all autistic people need the same changes, which is simply not true.  I would rather people just accept us as a bit different and that we may not fit the social model of ‘normal’ all the time.

The fact that autism is so varied can be an issue.  Instead we need to look at it more as an umbrella term rather than as one specific thing.  It is several conditions that have common characteristics.  There is a need for books and guides on the subject of autism to not stereotype or it could be a case of ‘oh, but the book says…’.  I tend to find the books written by autistics themselves are often better than those written by so called experts on the subject. 

I recommend The Girl with the Curly Hair Project as a good guide to what autism is like for a lot of people, especially females with Asperger Syndrome.     https://thegirlwiththecurlyhair.co.uk/

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AARGH!

Autistic Meltdowns

I suddenly start to yell at the people around me, getting increasingly loud.  I yell abuse, threats and swear.  I stamp my feet, bash the table and cry, sobbing loudly.  I look like a toddler having a tantrum, except that I am a full grown adult.

A tantrum is voluntary, used as a tool to manipulate and get your own way.  However I have no control at this point, there is no planned purpose or manipulation intended.  My emotions are at over load and crashing down like an avalanche.  I am having an autistic meltdown.

This describes my meltdowns at their worst, when I totally loose it.  Not all my meltdowns are at that level.  They vary in intensity and in how long they last.

What causes me to have a meltdown is not always easy to pinpoint.  It can be caused by a sudden change in plans or lack of knowing what the plans are.  If plans are made and I am expected to be part of those plans, but I am not informed in exact detail as to what those plans are in advance, it can cause me to get confused and upset.  Any kind of confusing situation can cause a meltdown if it continues being confusing for a significant length of time.  Frustrating situations such as people continuously not listening to me or things going wrong a lot can be a trigger.  Another trigger can be interrupting one of my OCD routines, when I am already somewhat stressed.  Fatigue can be a cause, when I am too tired to control myself any more.  Major disappointment has been a trigger in the past.  Sometimes a meltdown can be me having made such an effort to fit into a situation for hours that I eventually explode.  I will have kept back opinions, been polite to people who frustrate me and basically have been in a situation I find difficult for so long that in the end a meltdown is like a cathartic release.  Putting pressure on me to do something I have clearly already said no to is a big trigger and can cause me to feel like you do not respect me, no means no!

Often a meltdown may not be caused by one specific thing, but by a series of things that can build up over time.  It can take hours or days for the triggers to build up sometimes and one last thing can be the final straw.  I can sometimes work out why I had a meltdown afterwards, but often struggle to know at the time and sometimes never figure it out.  Asking me at the time why I am having a meltdown is not a good idea, often it just makes my meltdown worse, making me frustrated that I do not know why I am having it.

Sometimes I can feel myself getting increasingly annoyed and know I need to get away from the situation.  If I need to leave a room or walk away let me, it will be better for everyone.  However I can’t always feel it coming and it will happen like it or not. 

When I was younger I had more frequent meltdowns that often lasted longer than they do now.  I had them a lot as a teenager in school.  I think I was frustrated with life then, feeling trapped in a school that did not really meet my needs.  Being undiagnosed I was not getting the right support.     Also I am sure puberty played a part.

I still have meltdowns, but less often than I used to.  I feel maturity has helped a lot having had time for my hormones to settle down and time for me to get used to life as an adult.  I also feel my independence has helped me.  Since l got my own flat I feel more stable and able to manage my own life.  I am in charge of what do and when, making me less confused and frustrated.  I am also better at dealing with certain kinds of stressful situations.

When I do have a meltdown now I find I they do not last as long as they used to.  I can calm myself down more quickly and rationalise with myself somewhat about the situation.  Being angry at people who can do nothing to help is daft and will not get me anywhere.

Yoga breathing can help slightly to prevent a meltdown getting worse, but it depends on the exact situation.  It helps me to focus my mind on the breathing and think calmer thoughts. 

I hate that I still have meltdowns at all.  It makes me come across as immature and selfish.  It gives the wrong impression about me to other people, like I am just some angry, hate filled bitch.  Telling me to grow up or to stop being so over sensitive is unhelpful, if I could totally stop having meltdowns I would.

Friends & Friendship

I would not describe myself as popular and do not think I ever have been, but I have more friends now than I used to.  It took me a very long time to meet so many people I would call true friends.  People I know I can share with honestly and openly, who I trust will not judge me and at least try to understand me.  I know that when it comes to friendship it is quality over quantity, better to have a few loyal friends, than lots of people who are only there in the good times, and let you down when things are not going so well.

I remember struggling to make friends when younger.  As a child I had phases of having a few friends and phases of not really having any at all.  I remember not fitting in very well with others at school and spending a lot of time on my own during break.  At primary school I did not always mind having so few friends as I enjoyed my own company and could often amuse myself.  However by the time I went to secondary school I was feeling increasingly lonely.  I was bullied to the point I would often refuse to go to go to school.  I knew by this point that I was somewhat different to my peers.  At the age of twelve I was diagnosed as having Obsessive Compulsive Disorder, which went some way to explain my social life or lack of, but as a teenager I realised there was more to my issues than just OCD.  However I had no idea what I could do about it.  For a lot of my teens I had very few friends.  I did not really fit into any social groups.  At times it really upset me to not be invited to things and be left out of social events, but sometimes I minded less and I suppose I got sort of used to not having many friends.

During my first two college courses I did not make any friends.  I got on OK with some people, but could not say they were really friends.  When I started a performing arts course I got on somewhat better with people.  We had a common interest in theatre and performing.  Drama people are often the outsiders, the ones who did not get on so well in school and tend to be a bit different.  Also performers tend to get good at reading people and understanding them better having to work so closely together.  I did not get invited out much, but back then I did not drink alcohol and I think some of my class knew I would not have enjoyed a drunken pub crawl or nightclubs much anyway.  Over my three years of performing arts at college I got slightly better at socialising between classes.  I did get invited to a couple of parties and had a twenty-first birthday party myself.

At twenty-three I went away to university.  I felt I fitted in and got on with people there a lot more than I had anywhere else.  By the time I left university I felt I had made some real friends.  I think partly it was having common interests, but also I was more mature and had learnt how to socialise a bit better.  I had started drinking by this point and enjoyed going to pubs and clubs more.  (Although I was not really a heavy drinker compared to a lot of students and did not go to night clubs very often.)

Since moving out of my parent’s house and living more independently I have made more friends and gained more of a social life.  It helps that I understand myself somewhat better now, having finally had a proper autism diagnoses and have taken time to learn more about my conditions.  I am less angry and confused about who I am, which helps how I come across to others.  I feel calmer and have less public meltdowns.  Although I still have the occasional outburst, they do not last as long and I get over them more quickly.  Also I have learnt the kind of people who I tend to get on better with and will make more suitable long term friends for me.  I have found that when it comes to making friends age and sex does not matter so much as understanding.  People who can accept my autism and OCD and do not judge me based on my conditions.

I have had one really good friend throughout the years that I have known for longer than anyone else, since I was in my early teens in fact.  I really appreciate this friendship because this person has been there for so long and always supported me even when things in my life were not going so well, and I had no other friends.  It showed me that I could make real friends if I made the effort and it was worth doing so.

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Autism Posts On Social Media

When I was diagnosed as autistic a couple of years ago I started following a few autism charities and support pages on Facebook.  I find they often post some interesting articles, help me to understand my autism better and help me to explain to others what it can be like being me as an autistic person.  However there are times I get frustrated at some of the posts from these pages.

‘Top Ten Positive Autistic Traits’, ‘Terrific Traits of Autistic People’, ‘Positively Autistic’, Google positive autism and this is the kind of blog and Facebook post titles that come up.  These kinds of posts appear in my Facebook news feed from time to time and always manage to annoy me.  Sure, autism has some positive traits, but these are outweighed by the negative ones.  The fact that we even have autism charities tells you it is not such a great thing to have or we would not need the support.   A lot of the traits typically said to be positive, I have actually found to be negative in my life.

Positive Trait Negative Reality
Makes me honest, straight forward and unable to lie.  Some people say they like this about me. I am told that I can be too blunt at times.  Being overly honest can hurt others feelings, or make me appear rude.
Very good attention to detail, work more likely to be thorough and accurate. Too caught up with tiny details that may not matter over all and not always seeing the bigger picture.
More focused on a project, less easily distracted. Even when more important matters may come up, I could be too focused on something that is no longer relevant.  Risk of ignoring others to my loss whilst focused on a project.
More organised and better at planning. So organised that I worry or even panic sometimes if things do not go to plan or other people change things without warning.
Expertise in specialist interests. None of mine seem relevant to the job market. Have been told I can seem lecture like on some subjects that I am really into and bore people after a while.
 Exceptionally good awareness of myself. Including being aware of my faults and failings which can be depressing at times.

 

How am I supposed to be positive about my autism when I am called rude, selfish or an annoying know it all fairly regularly?  When you manage to annoy other people on such a regular basis without meaning to it can make you feel less than positive about it.

Some of the worst posts are those phrases you are supposed to share on your Facebook wall such as ‘My child has autism, what’s your kid’s super power?’ or ‘I bless all autistic children’.  Almost all of the phrases are about autistic children, it is as if once you are adult you are suddenly no longer autistic or it at least no longer matters.  A lot of the phrases make out how great it is to have autism and some almost make out we should celebrate it.  While it is not a tragedy, it is not something I am going to have a party for and get really excited to have.

imagesPosts like this do not even mean anything!

It would appear from some posts that I am not an individual, but some kind of clone.  It may seem petty, but the use of language matters when writing autism posts.  Too often posts are written using pronouns such as them, they, and all.  It makes it sound like all autistic people are exactly the same and that we have no individual personalities.  Often the worst examples of this can be found more in the comment sections of autism posts.  This gets annoying when you find out some of these people who comment are support workers, teachers or parents of autistic people who should know better.  ‘They are all so well meaning’ or ‘they are all so wonderful’, makes us all sound like we are too stupid to know any better, and that every time we say something less than helpful or nice we actually do not mean it that way.  Yes there are times I say the wrong thing and appear selfish or rude when I do not mean to, but there are times I am less than well meaning.  It makes it sound as though we can never do any intentional harm.  I do not like to think of myself as a nasty person, but I admit to times I have said or done things that make me less than wonderful, and I knew I was doing it.  Not all autistics are wonderful, loving or nice, nor are they all horrible, rude and annoying.  Autistic people have personalities that also affect behavior and attitudes, just like everyone else.  Some days I am in a bad mood and not so great to be around.  Sometimes this is my autism, sometimes it is just me having been really annoyed by something or someone, my hormones or lack of sleep.  I am not an all, they or them, I am me.

I think more posts on these pages should be written by autistic people themselves.  They can give hints and tips they have found useful to other autistic people and tell parents and those who work with autistic people what it can really be like for some of us who actually have it.  One of the best support groups on Facebook I have found is The Girl With the Curly Hair.  She is autistic and writes very well about what it can be like to have autism.  It is refreshing as an autistic female myself to have another autistic female who can communicate well instead of the usual male bad at communication stereotype.  Plus the comments on her posts tend to be from people who seem to understand what being autistic can really be like.

Try not to share those autism phrases that mean well, but actually can come across as slightly patronising a lot of the time.  If you should choose to comment on an autism post remember not to lump all autistic people in as one mass.  That aside there are some really good posts about autism out there and they can aid understanding, but try to remember not every post will apply to every autistic person, autistic people are individuals.

Faux pas and other social issues

FAUX-PAS-760x400

I often seem to say the wrong thing or too much.  Put my foot in it you might say.  Sometimes everyone does this, but I find myself doing this rather a lot.  Part of the reason could be my autism, but I am not always able to tell what is due to my autism and what is a mistake most people could make.

I am told I can be very blunt, meaning I simply say what I think without social niceties.  I do not see why I should not say things as they are; it seems pointless to pretend otherwise to me.  Although obviously even I can tell certain situations require subtlety.  I can often tell when others are using social niceties and most of the time I do not mind, but sometimes I would prefer a straight answer.  I think people can mistake my bluntness for deliberate rudeness which can be annoying.  I tend to get this from people who know me less well.

I am also told I talk way too much at times.  There are times I could of stopped talking about an issue a few sentences back and may have gotten away with not saying the wrong thing if I had stopped talking about it sooner.  However I can struggle to tell if I am over discussing a topic sometimes.  I may also bore people with my long rambles on an issue they are not so interested in.  I have this urge to get all my thoughts out on a topic to someone at times.  I feel like I may burst if I do not say it.  Part of it could be I over think a lot of things to the point my mind feels full and I simply have to unload.  A bit like some of my blog posts I suppose.  I do find writing about a topic helpful.

I find certain social situations harder than others to know what or how much I should say.  I find situations I have experienced less often harder.  Practise has helped me get better in a lot of situations.  I think I am getting better at chatting in pubs, cafes and at family dinners, although not always exactly getting it right.  I find certain people easier to chat with as I know what I can get away with saying with them.  Family members and friends I see more regularly are easier on the whole, but people I see less often and new folk can be harder.  I often end up being way too blunt for them or talking so much they get annoyed or walk away.

Social media is often easier for me.  I enjoy chatting online, but sarcastic comments can be lost on me, although I get the very obvious ones.  Without facial expression or voice tone sarcasm can be tricky for anyone.  I also find some people who do not know me can be offended by my comments.  Bluntness strikes again!  I try to make my comments not appear rude, but now and then some people just take them the wrong way.  In these situations I often stop responding to them as it is not worth an argument.  Although I have occasionally purposefully been rude back to show them that their comments are wrong or unhelpful or just me getting annoyed, then I step away from it.  I have found that turning off comment notifications can be helpful.

I try to remember to think before I speak in certain situations.  However I find this tricky when I get onto certain topics I am very passionate about or in a heated debate.  I guess that this could be common for a lot of people though when things get heated people say things in the moment.

Another thing that has been pointed out to me is that my voice can get monotonous, although I like to think my background in drama has helped make it less so over the years.  I certainly think my speech was less varied as a child, which must have become tedious to listen to after a while for some people.  I can become monotonous again now when rambling, but having been made aware I do this I often try to not allow it to happen too much.  In drama classes we learnt about inflection and emphasizing certain words which was useful for me.  I feel drama has a lot skills high functioning autistics could find helpful and taking a few classes would be beneficial for a lot of autistic people.

What I find annoying is when people stereotype how they think I will be in social situations.  Firstly I actually enjoy socialising which surprises some people who think autistics all enjoy being left alone on their own all the time.  Sure I need alone time, everyone does, but too much alone time makes me feel lonely.  Plus my OCD and other anxieties can get worse if I spend too long alone with my own thoughts.  Secondly I do go to pubs and drink alcohol.  (OK I spent nine months last year t-total, but that was not me avoiding alcohol for autistic reasons, that was a whole other thing you can read about in a previous post should you wish.)  I am not a heavy drinker and can go for weeks at a time not drinking, but I have been drunk before more than once and may well be drunk again.  There is often an assumption that autistics cannot stand booze and find pubs too noisy, which although often true, is not always the case.  I have heard that autistic people have no sense of humour.  Wrong!  I do take a lot of things more seriously than some people, maybe too seriously at times, but I certainly enjoy a laugh.  Not only do I like many sit-coms, comedy films and stand –up comedians, I can enjoy laughing in a social setting with friends.  I can see the funny side of drunken mishaps and can laugh when friends recount amusing stories.  As for the autistic people are introvert and quite thing and do not talk unless directly spoken to or even are totally mute, well this could not be further from the truth in my case.  As I wrote earlier I am more likely to over talk and say too much.  Also I will talk to people who have not directly spoken specifically to me, but more generally to everyone in a room.

Autism is not an excuse to be deliberately rude to someone and it is not an excuse to take over a conversation and have the most say about an issue, but it can mean someone may not know they are doing this.  Sometimes it helps if other people around them give them some understanding and do not just assume they are being rude.  It can help if people point out what they are doing, although with tact and quietly not in front of everyone, if an appropriate moment comes up to do so

 

Why did I even bother to be diagnosed at all?

I was diagnosed as Aspergers Autistic aged thirty-one. A few people asked my why I needed or wanted to be diagnosed at that age, what difference could it make to my life now I had already got that far into adulthood? Well…

It was a relief to have the diagnosis. I had suspected I was autistic for some years and my mum had been reading up on it when I was a teenager. She knew there was something different with my brain, I was just so unlike others. Having suspected it for years it confirmed things for me and my family. It proves what I thought about myself which was I can not help being the way that I am sometimes. Also confirming the type of autism gave me a clearer idea of things.

Having an explanation for being slightly different or awkward really helps at times. I have been called selfish, attention seeking and rude by numerous people over the years when I am actually trying my hardest to fit in and do not mean to appear that way at all. Even worse is when people accuse me of these things when I am really struggling and having a melt down. Saying such things will often just prolong the melt down or makes me more likely to have another one. At least now I can say I am autistic and am trying my best, please try to be understanding. Being autistic is not an excuse to get your own way or to knowingly be rude to someone, but when I do not mean to be it helps to explain things to people. If someone then says I can not possibly be autistic, as has happened in the past, I can now say I have been officially diagnosed by professionals.

Being diagnosed officially helps when claiming benefits. Getting Employment Support Allowance and other benefits is often hard and saying you suspect you have a condition does not count, you need a professional diagnosis in your notes. Last time I was assessed it was tricky to prove my need for ESA when I was yet to be tested for autism. I had a support worker who stood up for me which helped a great deal, but I no longer have a support worker so if my claim comes up for assessment again I will need this diagnosis more than ever.

I now feel more justified spending time researching Aspergers and autism. I can find other people with autism who I can identify with at least in part and say me too, helping me feel less of an outsider.

If you spent your entire childhood and youth feeling different and like you did not fit in would you not want to confirm why this was? For my own peace of mind I needed to know for sure.

My Monthly Rant (sorry guys!)

‘Do you not know I am a woman? When I think, I must speak.’ In this case about periods or menstrual cycles as they are also known. Periods are something all women experience (bar medical reasons) and when mine started I knew this. However this did not help me to feel any better about them. I know most girls find periods a bit scary or worrying at fist and take time to adjust to them, but I totally hated them. I became afraid of my periods. As someone with OCD the messiness of them did my head in. I struggled with sanitary pads since I always had issues with certain things against my skin, which is an autistic trait I had much more when younger. I briefly tried tampons, but with my bad hip struggled to use them. Then there were the stomach cramps which at times had me doubled over in pain crying. Puberty and hormones are all part of being a teenager, but add in autism and OCD and you get one very messed up person. I hated how periods made me feel mentally each month. In the end the anxiety got so bad my mum took me to see the doctor.

The doctor put me on ‘the pill’ which was life changing. I had more control over when I had a period, so could time it for when I had less stressful things going on. The pill made my periods a bit lighter which made them easier to deal with. My stomach cramps became less frequent and less intense. Gradually I became less afraid of my periods and learnt to cope with them. I am very grateful my mum took me to the doctor and got me on the pill, which I still use to this day.

I got used to sanitary pads in the end. I learned which ones I found most comfortable and worked for my needs. However over the years buying pads has become trickier. They keep coming up with new versions and the choice is now huge. I can spend ages in some shops just staring at the range of pads trying to find the ones I want. I also find a kind I like, and then they change them or stop stocking them. I would rather they kept it simple. I mean who an earth came up with ‘wings’, are my pads supposed to fly?! I think the idea is they are supposed to keep the pad from bunching up so it stays flat, but in my experience they tend to make things worse if anything. Before you even use the wings I find they often stick to themselves. I like the pads without wings, which you can still get, but are becoming increasingly rare. Larger shops tend to still stock then, but smaller shops often do not. Then there are pads with added fragrance, often aloe-Vera, which considering how many women are sensitive in that area seems daft. The fragrance can irritate and make things sore and just how much are other people going to smell a woman’s intimate area anyway? A fairly new one is ‘discreet’ pads. Supposedly rustle free wrapping for use in public toilets (although they don’t seem all that rustle free to me). However as a woman in woman’s toilets I do not mind if I hear other women unwrapping pads, it is hardly unexpected or offensive. Besides I hardly ever notice the noise from other cubicles anyway and it was a non issue for me.

Some sanitary pads seem ludicrously expensive, I will admit I do not use the cheapest brands, they feel plastic like and often do not stick down well, but the mid price range seem fine to me. Although sometimes you have to use what you can get in an emergency. Recently I saw an article online about tax on sanitary wear, often known as ‘the tampon tax’. It is wrong to tax sanitary wear when other items deemed essential are not taxed or at least have reduced tax. Although one woman was quoted as spending at least £10 a month on her sanitary wear which is far more than I have ever paid. I do realise how lucky I am to have cotton soft pads now. My mum told me about sanitary belts which sound very uncomfortable and tedious. They were an elastic belt used to hold pads in place before the invention of self-adhesive pads.

Is it just me or are adverts for sanitary products really daft? I do not do most of the things the women in the adverts do even during the rest of the month when I am not on my period. I have a really good sanitary product now so I can do anything, no, it does not make me super woman. Then there are the adverts trying to sell my pads almost as if they were a fashion product with pretty floral designer pattern on them, err why? I don’t care if you draw floral patterns on the pads or not, what I want to know is do they stick well and do they absorb well?!

I am now fine with my periods mostly. This may sound daft, but I am actually quite proud of myself for overcoming this issue. I am glad I live in a more open time when periods can be discussed more than they used to be and sex education in schools is getting better. I found the talk the school nurse gave us in year seven (aged eleven/ twelve) somewhat helpful. However I do think some girls need more support in learning to cope with periods, especially special needs girls with learning difficulties or anxiety related conditions or autism. Girls need help with the emotional side of periods as well as the practical physical side. I am very glad my mum never hid periods from me and I always knew they were something to expect. It must be terrifying to get one without knowing what it is, which I gather used to happen more than it does now.

Before anyone male complains I know boys also have puberty and hormonal issues, especially as teenagers, but not being male I have nothing I can say on this, other than I think they also need good sex education in school and probably more emotional support than they often get.