Personal Independence Payment and Mental Health

I applied in July last year for Personal Independence Payment (PIP). This is the replacement benefit in the UK for Disability Living Allowance (DLA).

I received a letter in response to this, informing me that I scored 0 out of 12 for having a disability, and that frankly they thought I didn't deserve the benefit...

I have no qualms with the system; they can't have everyone on this payment, but the reasons they gave me are frankly unrealistic...

This change in benefit has created a new system which completely disregards mental health issues.  Under DLA there was recognition for questions such as 'Can you wash yourself?'. DLA gave the option of I cannot due to lack of motivation which is my problem. Yes I can physically pick up a wipe and clean my face, and yes I do know how to run a bath and sit in it, but due to my mental health I am not able to bath myself. 

Not bath yourself?? Really?? Yes really. There are a couple of reasons for this; firstly I can barely summon the motivation to leave the couch, never mind get up, run a bath, wait for it, get in the bath, clean myself, wash my hair, get out, dry myself, sort out my hair, clean the bathroom. Secondly, I don't feel safe to get in the bath. I feel as though if my voices started telling me to in the bath, I'd put myself beneath the water and  drown myself. 

By my knowledge, I know that I am unable to clean myself unassisted; my mum has had to bathe me, and I've had 4 baths in 6 months. However, because I have the physical capability to turn a tap I am considered 'Able to bathe myself' under this new system.

I am ill enough that I am being considered for inpatient hospital care. I hear voices, and have visual hallucinations. Last time I got a bath, I saw and felt leeches crawling all over me and had to jump out and run away. 

Mental Health is treated as a 'made up' sickness. I just wish that the people who make these rules had to spend one day in my head. I would love to be well, to be independent and to be free of myself, but it's not something you can just 'snap out' of. 

A very close friend of mine is wheelchair bound... She is very independent, in everything except being able to walk. She receives help from the state. I do not begrudge her this, she is very deserving of it. However, I am held in a mental prison, dependent upon my poor mum for everything; hospital appointments, financial management, midnight visits to stop my panic attack.

I am just clinging on to the faint glimmer of hope that is the appeal. 

I have Asperger Syndrome, Severe Recurrent Depression, ?Bipolar disorder, ?Schizophrenia, Post Traumatic Stress Disorder, Bulimia Nervosa, Anxiety, Panic Disorder... and that's just my mental health. Obviously though, all my illness is in my head... so all those diagnoses count for nothing...

I work, and I have to do overtime as I have no other income. This is making my illness worse. I know I'm getting worse as I'm starting to research methods of suicide again. I don't consider it suicide though, I consider it euthanasia. When my psychiatrist, other doctors, family and friends ask if I feel suicidal I always say no. I'm not exactly lying, I just consider it differently to them. 

If a dog is ill for a long time getting no joy from life, a vet will put it down. Why can't a human do the same for itself?? We're animals at the end of the day, and should be able to choose our method and circumstance of death. 

Hopefully, one day I will be well enough to lobby and petition government, making them sit up and take notice. That is, if I get the help to survive that long... Each and every day is a battle, and sooner or later I'm preparing to wave a white flag and throw in the towel. 

Sorry, got to go... head too noisy, can't think...

My latest obsession!!!!

I've been through many an obsession in my time... the Royal family, F1 motor racing, history of the Olympics... the list goes on...

These are all in what I call 'factfiles' on my computer... basically tabulated data stored in massive Excel documents for my joy and perusal...

My latest obsession is, for once, a practical one... UPCYCLING!!!!

I started looking into upcycling when I became very strapped for cash... so I started watching SuperScrimpers on Channel 4... then how my obsession blossomed!!!

It started with learning to knit... I decided that a distraction for me when I'm having a meltdown is to knit... If I make a scarf a month I either have 12 christmas presents ready to deliver, or a charity has scarves to sell...

It's now moved on... I found myself a couple of weeks ago strolling down the wallpaper aisle in B&M, taking a LARGE sample from each of the sample rolls...

I then went to a local charity shop that I visit weekly, and did some haggling... I noticed that they had been struggling to sell a set of 'Disney's Cars' canvases - they'd been there for weeks, and right over the christmas period too... The three were meant to be £1.99 each... but with a bit of haggling and an awkward smile I managed to buy all three for £1!!!!!! Bargain!!!! Well, except they were for children, and pretty tatty...

Roll on the wallpaper!!!!! I took some free wallpaper samples, some PVA glue I had in, my stapler, and set to work!!!!!

After some 'cut and stick' action (I am a primary school teacher after all!!!) I ended up with these...

I'm sure you'll agree,  a much more chic look for a 26 year old's bedroom!!!!!

So for a grand total of £1 plus 15 minutes of effort, I have three good sized canvases for my bedroom which I priced up to buy new (obviously not the same as mine, they're unique!!!) at £15!!!! A whopping £14 saving, much better in my pocket than in that of some big corporation...

So there you have it, the first stages of my latest obsession...

Hopefully this one sticks around, I'll save a fortune!!!!!!

Aspergian Meltdowns

'Flying off the Handle'

As mentioned in my previous posts, today I thought I would talk about 'Meltdowns'. As you might imagine, these are a part of Aspergers which can be  the hardest to hide; the part of Aspergers which labels us as difficult, rude and irrational.

It's therefore quite ironic that I have titled this piece 'Flying off the Handle', although of course very deliberate. That is because my biggest source of stress in social situations is misunderstanding, which, in turn, causes me to melt down.

Flying off the handle is an example of figurative language; that is, phrases which don't mean what the literal definitions would suggest. 

More information about figurative language and Aspergers can be found at https://asdhelp.wordpress.com/tag/literal-and-figurative-language/ and http://www.specialed.us/autism/asper/asper12.html.

Back to the focus of this blog post; meltdowns.

A meltdown in and Aspie is comparable, I suppose, to a temper tantrum in a small child. Through reading, I am led to believe that these likenesses are why the general public seem to find the Aspie meltdown as a 'nuisance' or as 'childish'. There are many key differences between a true meltdown and a tantrum though, and understanding these differences is a starting point to understanding the mentality of an Aspie.

Please allow me to copy and paste here some information regarding an Aspie meltdown; they put the issues into words much more clearly than me...

*  Meltdowns are neurological, not emotional.  They are a product of the different configurations in the AS brain and the hyper-sensitive AS nerves.

*  Meltdowns are a sign that an AS person is over-whelmed.

*  Meltdowns are not temper tantrums.  They are not triggered by anger and are not indicative of someone not getting their way.

*  Meltdowns are not anxiety attacks.  However, anxiety is a contributing factor leading up to a meltdown.

*  Meltdowns are manageable before they’ve broken.  There are warning signs leading up to a meltdown, both internal to the AS person and external, visible to others.  Paying attention to these signs is key to preventing a meltdown.

*  Meltdowns are not controllable.  Once a meltdown is triggered, trying to stop it is like trying to tell the weather where to rain.  Conventional anger management and calming techniques will not work when a meltdown is under way.

*  A person having a meltdown is overwhelmed. 

*  A person having a meltdown is not over-reacting.

*  A person having a meltdown does need to remove themselves from the overwhelming environment and get to some place calmer.

*  A person having a meltdown does not need to ‘buck up’ and push themselves through it.

*  A person having a meltdown is horribly embarrassed by it, far more so than any onlooker is.

*  A person having a meltdown is unlikely to become violent or a threat to others, as long as they are not provoked.  Remember, they are in a heightened state of fight-or-flight and may perceive many actions by others as threats to themselves.

In short, a meltdown is an uncontrollable 'fit of rage', which, once under way is impossible to bring to an end, it must continue. 

Now a personal plea from me;

If your Aspie is having meltdowns, please make the effort to learn any warning behaviours that they may display, such as exasperation or confusion, and upon noticing these make it easy for them to escape the stressful situation. By doing this you are providing them the opportunity to avoid the humiliation they would feel by having a public meltdown, such as happened to me in work the other day. It has taken a very public meltdown for my employers to realise just how differently I respond to what they consider to be 'everyday' stresses.

I pretty much guarantee that your Aspie doesn't mean it, and will be mortally embarrassed by their outburst once they have calmed down.

L x

Girls with Aspergers

AsperGirls!!!

This post is going to look at Girls with Aspergers. Sorry boys but I think you all get enough attention. The reason in my view that 4x more boys are diagnosed that girls is that the female characteristics differ to male, yet both use the same set of diagnostic tools, based upon the male characteristics.

Hopefully by the end of this post you will understand female ASD, and how whilst we seem to differ from the boys, we have the same issues, they just present differently.

I am going to use this table as a frame of reference and structure throughout this post. Obviously I'm not a professional, so most of the references will refer to me, as I am the main source of information I've got :)

Appearance/Personal Habits.

Many people have said to me 'You don't look like an Aspie'. That has always struck me as a bizarre comment; I have Aspergers, therefore I am exactly what an Aspie looks like!!! 

Those who know me will know, I do not wear things which are uncomfortable. If clothes are not necessary then I'll be at home in comfy pyjamas... I only bother with hair and makeup for special occasions too - it's just too much of a faff to do on an everyday basis. 

For boys, they tend to wear comfy clothes as a rule, so this may not be noticed as much in males.

I don't follow fashion at all, I wear what suits me and what is comfortable - I don't suffer discomfort at all.

In respect of the 'youthful appearance' I suppose my lack of 'dressing up' can make me look a bit younger - sometimes I get asked for ID for alcohol in the supermarket when I'm almost 25 - but not very often.

I definitely think the 'well-balanced animus' refers to me. I am a girl, I am confidently a girl, but I am not 'girly'. That is, whilst I know from magazines that girls are into fashion, hair and beauty, and socialising, I prefer to watch programs about cars, motor sport and I am often accepted as 'one of the lads'. However, I am a heterosexual girl, I just feel balanced.

I am very good at blending in, it is one of my worst faults. I find myself agreeing with people to fit in socially, or adjusting my accent so as to fit in with the crowd. I admit that after diagnosis I can recognise this in myself, whereas before I was diagnosed I would have argued that I had a personality. I now know who I am, but I know that only a small number of people know the true 'me'. 

I love nothing better than watching films intently. I like to escape into a faux-reality. Whilst I'm watching a film I'm not worrying about anything else in the world. I now try to watch a variety of different films, but I often revert to my childhood pattern of watching the same film numerous times back to back. I used to watch a tape to the end, rewind it and press play straight away!!

I like to have control over anything I'm doing, and if somebody interferes and breaks my train of thought I cannot start again and I have to abandon the project. Today I watched the F1, and Kimi Raikkonen summed up this feeling perfectly; 'Leave me alone, I know what I'm doing!' In short, if you want me to do something leave me to it; if you want it done your way, do it yourself!

I love nothing more than to be at home. If I didn't need money I could happily be at home all day every day. People say 'I need to work, I get bored'. This baffles me; my brain is always puzzling over something, I don't have time to get bored!!

Intellectual Life

As is suggested by this table, I fall under the umbrella of 'undiagnosed as a child, considered shy and gifted'. I was always ahead of my peers in terms of education. However, the lack of being able to study independently and no support due to no diagnosis means that I struggled once I started my GCSEs. I am capable of learning anything, I just need support to do so.

I don't consider myself to have a savant skill, although asking different friend and relatives obtains different responses to this question.

I have a wide range of interests, but these are very narrow and specific in nature; for example, I am interested in the history of the Royal family, but only the Royal family, no other history. I am also interested in sport, but only motor sport and athletics. These are some of my 'obsessions' (I hate using that phrase.)

I was able to read fluently before starting nursery school, and by the age of 7 I had fallen off the top of the 'reading age' scale. I have studied and been granted a degree. However, throughout my 5 years at uni I studied on 2 different courses and only stuck the second one out thanks to the support of my personal tutor. I am liable to go 'hot and cold' on my interests; I danced for 18 years, but now dancing doesn't interest me at all.

I am very daunted by the world of work. I have held down my current employment for 4 years now. However due to many changes in the workplace the stress became too much for me and I had to have 6 months off due to a nervous breakdown. 

I have always been considered intelligent, but I lack a huge amount of 'common sense'. I understand things in the end, I'm just a bit slow at working things out. Because of this people think I'm a bit dim, but I'm more intelligent than I seem. Because of this, I have to learn by doing; telling me something does not guarantee I'll remember.

Emotional/Physical Life

Emotionally, I am a wreck. I am really incapable of coping with life. Even now, my psychologist is trying to encourage me to take some more time off work to recuperate, as I'm not getting any better. I am very masculine in that I don't speak of my problems until they bubble over. My emotional set-up is weak; I suffer with depression, anxiety, and a whole host of other mental health issues. 

Sensory issues are the bane of my life!!! The rest of being an Aspie I wouldn't change, as it's who I am, but I wish I didn't have sensory issues. Hearing every sound that happens in work, the phones all ringing, alarms going off on display items, the shredder being used, that man tapping the pen, the beeping buttons on chip and pin machines, people talking, background music....The list goes on!!! It drives me insane. I wish I could stomach more foods, I wish I could turn my sense of smell off, and my texture detectors in my mouth. I also want to find somebody else who tastes colours. Apparently this is more common that you'd think. I'll do a more in depth post about this soon.

I have a list of allergies so long that I can't get a medic-aid band, and severe gastro-intestinal issues. Every year I seem to accumulate a new medicine I'm allergic to, or a new food which makes me ill.

I have always been known to get restless legs when agitated; that is, my foot wobbles up and down, or my knees shudder. I am less active when happy, just jumping up and down for a short stretch of time; my stimming is mostly caused by my anxiety and stresses.

Meltdowns are something that affect me on a grand scale. So much so, that I will discuss these in depth in my next blog post. This can be caused by miscommunication and misunderstanding, or by stress and anxiety, feeling overwhelmed.

When I get very upset I do shut down, I can't speak, and the frustration I am shown due to my not speaking only exacerbated the situation. When I am stressed I am more likely to melt down, I shut down to silence more when I'm upset.

Social Relationships

I struggle with social relationships to an extreme level. I have only one friend who I trust wholeheartedly, and only a select few who I trust mostly. Even my family outside of my immediate family is a strained relationship.

I can be outspoken, but usually to negative reviews. So after this I become almost silent. I like to be quiet, I like to quietly assess the situation and to be aware of everything that is going on. 

In social situations where my best friend is there I can usually cope as she provides me with a source of sensibility, and will maintain a conversation which allows me to shut down and regroup myself. This allows me to recharge my social battery ready to re-engage with people around me.

I only tend to go out with one particular friend. We don't do girly stuff, we tend to go to ASDA!!! 

I do want to have a relationship, but it is too much of a stress. They would interfere with my routines; I need to find myself a happy place before I allow anybody to join me in it!!!

I would gladly spend my entire life with dogs if I could; unfortunately my sensory issues mean that I can't deal with their excrement. We have a family dog but I spend time with him at home and never walk him alone as I can't deal with the poo.

So there we have it...

This post became a lot more self centred that I'd anticipated. 

However, I think that, on balance, it gives a lot of evidence towards my being an Aspie. Just goes to show, you don't need to 'look' like an Aspie to have the  difficulties. 

This picture sums up my point entirely:

Introduction

So you think you know Aspergers/Autism (ASD)?

In this post I intend to quash the myths that many neurotypical (NT for future reference) people seem to have about us Aspies. 

I am diagnosed with Asperger syndrome, and I am becoming tired of NTs assuming things about me and how I feel, so the aim of this blog is to educate and illuminate.

MYTH 1: Children grow out of ASD.

A child with ASD will become an adult with ASD: They may become better equipped to deal with life, but it doesn't just go away. The reverse is also true; an adult with ASD was once a child with ASD, whether or not they had a formal diagnosis. I myself was finally diagnosed at 24, but this just puts a label to the lifelong difficulties I have encountered.

MYTH 2: Adults with ASD can't go to college/university/get a job.

Simply put, I have been through college, university and have held down part time employment, so therefore ASD is not a complete barrier. However, it has made my educational career and employment difficult, I will admit this. I have had many periods of illness which have been put down on the most part to psychological stresses and strains. However, I still have a degree, and a part time job whilst seeking appropriate full time employment if possible.

MYTH 3: People with ASD do not get married or have meaningful relationships.

I'm the first person to admit that I'm not a 'people person'. I get annoyed easily and I have a short social battery (http://www.wrongplanet.net/postt120383.html). However, I have had boyfriends, and I do want to meet the right somebody; I think I'm just very picky!!! I would need somebody who would accept me for me, accept my Aspergers and understand my foibles. Somebody who knows when I just need some alone time rather than cuddling on the sofa, without questioning. I'm quite capable of getting along with people in short doses, I just need to be able to escape when I get overwhelmed.

MYTH 4: Adults with ASD have social phobia.

Granted, I know I'm not the most social being, but I'm not scared of people; I just prefer to be around people on my own terms. Sometimes I actually avoid people because I think they don't want to be around me, and I know that when I become anxious I become brash and a bit aggressive. It's not that I don't want to be social, I just don't know how. So I notice what other people are like that seem confident and try to copy them... Except because I'm acting I do it about 20x the amount that's needed, so I always end up saying things that make people shout at me, or turn away from me... I am not scared of society, but I sometimes wonder if society is scared of me.

MYTH 5: People with ASD are just being rude.

You may notice that I'm not looking into your eyes. This is not because I am being dishonest or 'shifty' as I have been accused of before. It is because looking into your eyes HURTS!!! Unless you have felt it you won't understand, but to look into your eyes actually makes my brain hurt. Once I know someone I become better at it, but initially I will make myself acquainted with your teeth!!!! Put it this way, I only found out the other day the eye colour of my dad!!! My sister told me!!! 

I always do my best to try to care about what people are telling me, but sometimes it becomes difficult. This is because I don't have a sliding scale of likes and dislikes; either I really like something, or it doesn't interest me in the slightest. I always try my best though, so please bear with me!!!

MYTH 6: People with ASD lack emotion.

I can understand why this has become a myth about ASD. I will never forget the response of a housemate when the film The Notebook ended and I didn't cry and stated that the ending was 'obvious'; she told me I must have a swinging brick in place of a heart and subsequently cried into her cushion.

However, I do feel emotion. I feel embarrassment, anxiety, sadness, happiness and I like to laugh! Just because I don't respond how you expect me to doesn't mean I don't feel!!   

In conclusion....

Hopefully this first post has given you a insight into what ASD isn't. The rest of the blog will be aimed at helping you understand what it is, and how different it is...