Asperger’s Part 4 – Getting assessed

I got assessed today. I’ve managed to get from first GP appointment to full assessment in just over 6 months, which by all accounts seems to be pretty good going.

I have fretted about the assessment A LOT. The letter said the assessment would take around 3 hours, but I had no idea what form the assessment would take – interviews, tests, with my mum in the room, without my mum in the room – no idea. This is a bad thing for me: I like to know what’s coming and I had never had a psychiatric assessment before, which was pretty unsettling in itself.

On top of that, I was worried that I would get told at the end of it either:
a.) You don’t have Asperger’s. You’re just a weirdo, and moreover, you’re making a fuss out of nothing. Get a grip. (Note: this would never happen. Just my own personal worry!)

b.) You don’t have Asperger’s. You probably have something else. You know this stressful assessment process? You’re going to have to go through it all again for a condition you’re not even familiar with. Enjoy.

Now in asking around, what I have learned is that no two assessment centres are the same. Every place has a different way of approaching the assessment. So if you’re hoping to get the definitive answer on what your own assessment will be like – THIS ISN’T IT. This is just what my assessment was like, at the Cambridge Lifespan Asperger Syndrome Service. It might be different for you even if you get assessed at the same place. If you are worried, call or write to the centre. If you get fobbed off by a receptionist, don’t stand for it, insist on having one of the clinicians write back to you. I brought this up at my assessment and this is what the psychiatrist recommended. You will not be considered rude for doing so.

The assessment was actually a three hour interview with me and my mum. That sounds really intimidating doesn’t it? It wasn’t. The lady was friendly, direct and approachable. She respected my need to take time to answer questions. I got a bit stressed and upset partway through – she just gave me breathing time to stop before carrying on.

The interview essentially went through the DSM criteria (You can see a full list of them on my earlier post here). She asked questions about my behaviour now, and as a child in relation to those main criteria. Look at the criteria, consider ways in which they relate to you.  If you’re worried you don’t know – don’t worry, your clinician will question you in ways that allow them to find out what they need to know. The onus is on them, not you – this advice is only if you wish to feel a little more prepared for what you may be asked. The only thing that I do recommend you consider (and to be honest, *should* have done if you’re putting yourself forward for this) – you will get asked what has brought you there to be assessed as an adult. You’ll probably have thought about this a lot and you’ll want to consider what your answer will be. Knowing a good answer to the first question made me a lot more relaxed about the rest of it.

I don’t know if other centres do it differently, but mine gave me a diagnosis verbally at the end. She gave a description of what brought her to the conclusion, and some advice in the short term for things that might help with meltdowns and panic attacks. I’ll get a written report in a couple of weeks and so will my GP.

The conclusion of all this?

I am that unusual beast, the woman with Asperger’s. I am variously described as representing less than 1 in 4 of diagnosed Aspies, or as close to a 1:1.5 ratio. What does seem fairly certain is that the medical community is getting better and better at recognising the differences between males and females with Asperger’s, and are getting better at spotting it in women. Our symptoms present a little differently, and we may hide our social difficulties more easily, and may be better behaved as children than our male counterparts, but we exist.

Next steps

This point might be the end of the line for some people, but I see the assessment as a means to an end. In my case, the diagnostic centre does not offer ongoing care, only a diagnosis. So to get help with panic, anxiety and meltdowns I need to go back to my GP (yes, the one who said I couldn’t have Asperger’s because I looked ‘pretty normal’… may try and swap GP). From there I should be connected up to any relevant services to help me. As and when there is anything to report on what those services might be and what they are like, I’ll write it up on here. I really have no idea yet.

One more thing

An assessment will not change who I am. It does not excuse bad behaviour. It does not give me free licence to act like a jerk and say it’s because I am autistic. It is a tool. It is a means to politely ask for help and resources when you might not otherwise be able to get them. It is a means to ask for assistance and understanding when you are acting in a way that other people think of as weird or irrational. It is a way to explain and understand yourself. It is a way to get help. It is not a quick fix, or a magic wand either – from here, this is going to require some hard work and re-conditioning and that all has to come from me. If help is what you want – don’t expect it to be easy.

Then again, if you met me, you probably wouldn’t pick me out as terribly different (my friends might disagree). I am geeky, over-talkative, sometimes a little insensitive, but I am also caring, and perfectly capable of living independently. Asperger’s does not pick me out as too much weirder than your average nerd. Most of what happens with Asperger’s is on the inside – it’s how *I* feel, and how *I* understand the world, not how I present to the rest of it (although that’s part of it). It is a spectrum, and lots of people are much further along it than me. They may be more noticeably ‘different’. The only point I wish to make here is that not everyone you meet with Asperger’s is like Rain Man. Most of us are just geeks, and most of us just want life to be a little easier.

So that’s it – Asperger’s assessment from start to finish. Feel free to ask any questions in the comments, I’m happy to (try to) answer anything I can help with.

Part 1: On Asperger’s Syndrome and Getting a Diagnosis

Part 2: Getting a GP Appointment

Part 3: Waiting… lots of waiting

Search engine optimisation – a hopeless case

One of my blogging idols The Bloggess does a yearly roundup of the search terms that bring people to her blog. The fact that “I hate it when I’m eating and a t-rex steals my chair” directed 14 people towards her site is either a testament to the weird, weird people who inhabit the internet, or to Jenny’s writing. Or maybe both.

When I discovered that wordpress will actually log search terms that directed people towards my site I decided to have a look, hoping to find ways to optimise how to tag my posts. Unfortunately, I’m still really not sure how some of you got here.

The results.

 

‘anglesey abbey tea’ (9)

So far, so normal. I did blog on this after all.

‘amanda brunton blog chickens’ (6)

Well, I do talk a lot about the chickens. So far so good. The girls say ‘hi’ by the way.

‘slut dropping and surprise rape’ (3)

So far, so… wait WHAT? As opposed to that *other* kind of rape?

‘r2d2 drinks tray’ (2)

I have looked these up and I want one. So do at least two other people out there apparently.

‘wood chipper cider’ (2)

There are at least two other country bumpkins out there with both the classiness and ingenuity to make booze from a wood chipper. I salute you.

‘understanding asperger’s syndrome’ (1)

it’s in the title. *shrugs*

But through the list of recipe requests, and bizarre Star Wars related search terms came this gem. And I was afraid.

‘zombie virus recipe’ (1)

I have no words for this. And am still none the wiser how to optimise my blog, but on reflection, that may be for the best.

 

Hello 2013

I’m not a big one for New Year’s resolutions and all, which is probably why it’s taken me an inordinately long time to write the obligatory New Year post. 2012 was a year of very mixed blessings, so I wasn’t really sure how to round it up. If my life were a book, I think chapter 2011 would be entitled ‘Winning’ – I got married (twice… long story), I graduated with a first. I stayed in touch with most of my friends from university, and most of us got jobs (eventually). It would not be fair to call chapter 2012 ‘Disaster’ but it might be reasonably be referred to as ‘Running out of steam’.

There is a lot to be thankful for – I got my first full-time permanent job, and after four years of living apart, I finally get to live with my husband, who just graduated. My ever patient in-laws have not thrown me out. Brunton number one not only found full time work back at the bank, but has been promoted. Right at the end of the year, I also passed my probation in my new job. Our debts (not huge, but there) from university have been paid off, and we have some savings. Oh, and we have chickens.

It has also been a very tiring, stressful year with a lot of sadness. Coming up for nine months ago now, my friend Burgess killed himself after a long, drawn out battle with depression. Not only was this the first time I had experienced bereavement by suicide, but it was two weeks into my first job. The following ten days were a blur of tearful phone calls to mine and Burgess’ nearest and dearest and retelling the sad news. At the end of the week, my parents and I went to visit my nan, who was recently discharged from hospital. She was a little cross and off colour, although pleased to see us – she had asbestosis and emphysema, and was not a well lady. The following morning, she died peacefully in hospital.

Having never attended a funeral before, I found myself going to two in a week. Without Brunton number one, I would undoubtedly have lost the plot, but in the middle of this grief, he was finishing his finals at university. Cue a long, tedious battle to get his dyslexia assessed and have these circumstances taken into account in the marking of his finals. We have both never felt so tired.

Following Burgess’ death, I took part in a ridiculously long bike ride for the charity Mind and auctioned off my choice of fancy dress. The more money I raised, the fancier it got. I ended up spending several hours out in the pouring rain, dressed as Princess Leia, with a (surprisingly robust) papier mache R2D2 strapped to the back of my tiny bicycle, and I raised over £800 for my trouble. It was a huge highlight to the year out of the worst of circumstances.

Towards the autumn fatigue set in, and so did its friends – panic attacks and stress. Add to this the difficulties I have had in adapting to these changes to my life and home environment, and I find myself doing something I had never expected to volunteer myself for – getting assessed for Asperger’s.

This has perhaps required one of the greatest mental adjustments although I am hoping that the payoff will be increased support and help with aspects of day-to-day life and socialisation that I seem to find harder than other people.

So this year is going to have challenges but I’m calling this year out as ‘Recovery’. The Bloggess, a blogger with a serious fear of the number that comes after 12, is calling this year the library. The library is a nice place to be, where you can quietly prep for next year. This year is going to be spent getting back to normal, and being ready to take on whatever comes next.

As for resolutions – I detest the idea of making a new year different to the last with a short-term goal, intended to force yourself into something you dislike. You want to diet? Then diet. Nobody keeps to that sort of resolution, because it’s something they never wanted to do, and as the year wears on the incentive that the New Year gave is less and less. Instead, I choose to make investments, that is, do things that make me a better or more interesting person. I don’t do it every year but when I do, it’s an enriching enough thing that I stick to it. The aim is, at the end of each year, to feel as though I have done something to be a better person, not just to be richer, thinner or whatever. The year before last I wanted to learn how to make bread for myself – those of my friends who regularly get a fresh-baked loaf can testify to that investment!

Last year I belatedly told myself I had to keep up a blog, and get out and do or learn enough exciting things to fill it. As my readership appears to have expanded, it looks like at least some of you agree.

This year’s investment – keep up the blog, and make new things. I’ve got posts planned for new recipes, at least one film review-come-essay and one or two adventures. I’m also re-learning calligraphy because it is never a bad thing to learn new and interesting skills. Above all, I resolve to take care of myself, enjoy my time in ‘the library’, and get well. Get back to feeling like the old Amanda who was nutty in a good way, and not in a miserable, panicky, fruit-loop kind of way. There is only so much fatigue and sadness that can be thrown your way before you have to stand up to it and say ‘I am better than this’ and move on.

So here’s to 2013 – Recovery.

Getting ready for Christmas – or how to make Turkish delight

Last year at Christmas Brunton Number 1 and I had no money. We had negative money, in fact. He was a student, I was a temp, and we were both in our overdrafts. Instead of cementing our debts further with expensive Christmas presents, we made hampers of home made gifts for our friends and family including booze, chocolates and fudge. This year we both have reasonably well-paid jobs, and for the first time, we have money. Having begun asking what our relatives wanted for Christmas though, the resounding answer was: ‘moar sweeties’.

I’ll probably supplement some of the hampers with other non-edible home-made gifts but they will be the basis of all our Christmas presents this year. Some of the items have been specifically requested again – Irish Cream in particular – other things are being replaced or added to with more challenging recipes, the first of which is Turkish Delight.

My mum loves the stuff. She can scoff in seconds what a lesser woman wouldn’t be able to stomach. For those poor souls who haven’t encountered the delicacy that is real Turkish Delight (or Lokum as it is properly called) it is like the inside of a jelly bean, but lightly flavoured with lemon or rosewater, and usually full of hazelnuts and pistachios and dusted with icing sugar. The chewy, soft texture is basically the most luxurious foodstuff there is – and real Lokum bears no resemblance whatsoever to Fry’s Turkish Delight before you ask.

The maker of the original recipe of this delicious sweet came up with the idea mid 1700’s – and his descendants still run a shop in the same premises today. It swept across the Ottoman Empire as a delicacy and quickly became popular in England, best exemplified perhaps by Edmund’s deception by Turkish Delight at the hands of the White Witch in The Lion The Witch and The Wardrobe.

Modern recipes recommend the use of gelatin as the setting agent – I don’t. I tried making one of these recipes, and you will achieve something with the same consistency as one of those jelly concentrate cubes, and the flavour is nothing like as rich. The real stuff is set with starch. First of all you prepare a sugar syrup, then cornflour is boiled with water to form a gel. The two are mixed together and then boiled and reduced to form the slightly springy, yet ultimately squishy texture of real Turkish Delight.

What you will find by doing it properly is that the sweets may have a tendency to ‘sweat’. You’ll make something that looks gorgeous, dust it in icing sugar, all for it to be instantly absorbed. After a day or two, the box you put it in will be covered in sugary water and your beautiful plump Turkish Delight will resemble nothing more than pink, rose scented mush. This is a bitch.

I have since tried the recipe again with a few amendments and a bit more science to much more success. I would recommend being slow, patient and careful all the way through this recipe – it’s the only way to ensure you keep the firm texture.

Yay, science!

So apparently Lokum is the confectionery of choice for the discerning geek. First – sugar syrup. Mix together more sugar than would ordinarily dissolve in water and heat the water. It will now absorb your sugar (win!). Keep going and the water will evaporate, leaving behind an increasingly dense sugar mixture. The boiling point will keep rising and at the magical 115*c, you will have reached the ‘softball stage’, that is, the point at which if you tipped a drop into cold water, it would form a soft, pliable ball when cool enough to touch. 3* too high, and you have ‘hardball’ stage sugar and it will form a solid, crunchy sugar. This is not desirable for soft squishy Turkish Delight. If I impress anything on you today, let it be to buy a sugar thermometer. They cost around £15 and are the only way to do it without risk of scalding your fingers trying to test the damn sugar. Confectionery is a precise art, and it requires precise measurements.

The cornflour gel is also a lot of fun. Under heat, the starch molecules begin to break up, and can be persuaded to take on more water. You’ll be merrily mixing away something with the consistency of skimmed milk, and then in a matter of seconds you can stand your whisk up in it. Crazy stuff.

Your mission after this point is to boil and reduce the mixture and drive out as much water as you can without making the Lokum too dry. This is what will ultimately determine whether or not you get sweating mush, or plump delicious sweets. After you have made your Lokum if you dust it with sugar/cornflour too quickly, you’ll draw out all the liquid and make mush. The recommendation is to leave it to air dry first, then lightly dust in cornflour, and leave for half an hour to form a protective crust of sorts before smothering with icing sugar.

I normally credit recipes that aren’t mine to the appropriate sources but in this case I have honestly read the whole of google on ‘Turkish Delight’, ‘Lokum’ and variants thereof so I don’t really know where to start. This recipe uses a basic mixture I found here, but amended a little and with enough of my own experience and advice thrown in I’m pretty happy to say that this is tried, tested and edited. So here’s the recipe!

Turkish Delight (Lokum)

Ingredients:

– 400g caster sugar
– 70g cornflour (cornstarch if you’re from the other side of the pond)
– water
– ½ tsp cream of tartar
– 1 ½ tsp lemon juice

To dust:
– extra cornflour
– icing sugar

To flavour:
– I split mine in half and used 1 tsp rosewater (and some red colouring) in one half, and ¼ teaspoon lemon essence (a bit strong actually, you could use even less!) and a little yellow food colouring. You can chuck in pretty much anything though, and lightly toasted pistachios or hazelnuts are traditional as well.

With regard lemon essence – it’s more than worth your while to get something reasonably fancy – namely the ingredients should only be oil, and lemon oil. It will be strong tasting, delicious, actually made of lemons, and won’t have any additional stabilisers etc that will affect the stabilisers you’re already using in the mixture. Be sparing with it – it’s usually strong.

Method:

Preparation

– Be anally retentive. There aren’t that many ingredients and it’s easier to have them weighed out ready. You’ll also need to cover a mould in oiled greaseproof paper for your Lokum to set in. Make sure you oil it with something fairly flavourless like corn oil – do not use olive oil.

Make your sugar syrup

– Mix together the sugar, lemon juice, and 185ml water. It doesn’t look like much water but that’s the idea. The lemon juice isn’t for flavour – it’s a stabiliser. The citric acid will help stop crystals forming in your sugar syrup and it’s pretty essential.
– Put on a medium heat and bring to the boil. Brush down the sides of the pan with a wet pastry brush to avoid sugar crystals forming.
– Use your sugar thermometer to test when it gets to 115*. Try not to stir it too much or you may struggle to get the required 115*. This takes time. The water has to evaporate for this to work and that isn’t instantaneous – it can take up to about 25 mins. Once it has hit the magical 115*, remove from the heat. Give it a few minutes to cool and decant into a pyrex jug, and soak the pan in hot water IMMEDIATELY or you will live to regret it.

Make the cornflour gel

– Cornflour is weird. Under heat it will go nuts for water and form an odd sort of wallpaper paste. Mix your cream of tartar, cornflour and 250ml water thoroughly before heating. If you don’t mix thoroughly you’ll get lumps that you will be able to do NOTHING ABOUT.
– Whisk constantly over a low heat, taking care to get right to the edges of the pan. All of a sudden it will start to get lumpy – man up and whisk harder. Get it so that it is so thick that your whisk/a wooden spoon will stand up in it unaided. Again, your aim is to drive out excess liquid, so make sure it really is crazy thick. This is your main setting agent. Take off the heat once it’s sufficiently cooked.

Mix it up!

– Gradually pour in the sugar syrup, beating until smooth after each addition. Take your time. This recipe will not reward you for rushing.

– Boil gently on a low heat for half an hour and stir constantly. Most recipes at this point will tell you to stop once it’s golden brown – mine was golden brown from the start when I added the sugar syrup. This advice is balls. Keep going until it’s so thick that when you drag the spoon across the bottom of the pan, the mixture doesn’t rejoin the gap. My sugar thermometer read somewhere between 82-88*C (ish) for this whole section if this helps. Getting this sufficiently set is the key to stopping the sweets going mushy.

If you’re making double the quantity – double the cooking time. If it’s not sufficiently gloopy, give it another 10-15 mins. You can always test it by taking a bit out and cooling it down – it should be chewy like the inside of a jelly bean.

– Add your flavouring and colouring of choice. Smooth out into your moulds but DO NOT TOUCH THE MIXTURE IT WILL BE LIKE SUGARY NAPALM. It sticks, and it retains its heat remarkably well, and it will unforgivingly burn you. Use an oiled silicone spatula if you need to, but not your hands.

– Leave to set overnight. Again – no rushing.

Do your washing up right away. You’ll regret it if you don’t!

Finishing off

– Get the Turkish Delight out of the moulds. Getting them out is a tricky process because it sticks terribly. I ran a sharp knife under it a little at a time, dusting with cornflour as I went until it was all free from the greaseproof. The dusting is essential because otherwise as soon as you let go it will stick to the greaseproof again.

Put the blocks of Turkish Delight on some fresh greaseproof lightly dusted with cornflour, and dust lightly with cornflour on top. Slice into strips, and dust the exposed sides with moar cornflour. I’ve heard other recipes recommend dousing them in sugar and letting it dry them out, but to me this sounds like it will only produce wet mush like mine did. Air drying seems to be key. Suffice to say do not put them in the fridge or any other moist environment.

To to try to avoid the sugar sweating you may need to give this a while: if you give it a couple of days to reach a sort of equilibrium that seems to be best. Save yourself hours of wild goose chase online and believe me that two days seems to be the recommended drying time. It may need slightly less if you’ve got a dry mixture (I overboiled mine a bit, so it was quite dry, and only took a day). You’ll know if this is the case if when you lightly dust it with cornflour, it doesn’t absorb it up over the next couple of hours.

Once they have dried, cut your slices into chunks, and dust again with cornflour. After half an hour, dust with 3 parts icing sugar (confectioner’s sugar if you’re north American) one part cornflour.

Store in more icing sugar, on greaseproof paper. They should keep for at least a week.

Nom nom nom!

Next stop – fudge!

On Asperger’s Syndrome and getting a diagnosis

For a blog with Asperger’s in the tagline, I haven’t really discussed it much on here. To anyone who knows the Brunton family, Asperger’s syndrome goes without saying. My brother in law was diagnosed with Asperger’s Syndrome (or AS) aged about ten – although my father in law never sought a formal diagnosis, we’re all pretty certain that he also has the condition. Most recently, my four year old nephew has just been diagnosed with Asperger’s. As I will explain, I am now also seeking a consultation about the possibility I may have AS, and whatever the diagnosis, I intend to make a series of posts about the process. I have found sourcing information on this a difficult experience, so I hope this collection of posts will in turn make it easier for someone else. In the interests of honesty, I should also point out that I will edit these posts as I go, in case any of the information in them turns out to be misleading or incorrect – but I’ll flag it up as I do so that the description of the process of finding this information remains intact.

Asperger’s is a term that has undergone a significant dilution in meaning. It is a word which is very easy to throw around, as in ‘oh he’s just so Asperger’s’ when referring to someone who is in truth, nothing of the sort. The term ‘Asperger’s’ has entered common parlance to the extent that everyone who has a family member or work colleague who is a little awkward, or a touch pedantic is confidently asserted as ‘A bit Asperger’s’. Although the official diagnostic criteria for AS have substantially developed over time, and it is a catch-all term for a spectrum of symptoms, Asperger’s Syndrome actually refers to a very specific set of social and developmental criteria, which are broadly speaking common to most individuals with the condition.

So what is Asperger’s Syndrome?

Diagnostic criteria

At present, the most commonly accepted diagnostic criteria are these (source: Diagnostic and Statistical Manual of Mental Disorders: DSM-IV)

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

• marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction
• failure to develop peer relationships appropriate to developmental level
• lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
• lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

• encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus
• apparently inflexible adherence to specific, nonfunctional routines or rituals
• stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
• persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language e.g., single words used by age two years, communicative phrases used by age three years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific pervasive developmental disorder or schizophrenia.

It is important to consider that in the latest revision of the DSM, it is likely that the term Asperger’s is going to be retired in favour of ASD, or Autism Spectrum Disorder. I don’t know yet what the ramifications for diagnosis will be, but nor does anyone it seems. For the time being, this is the benchmark for most experts.

EDIT 18/03/2013: Asperger’s will not be in the next DSM edition in favour as including it as part of High Functioning Autism. I suspect however, that the term will stay in use amongst practitioners for some time, so I’m keeping this post up here even if soon it will be medically obsolete. High Functioning Autism is a bit obscure and few people are likely to look for help for something they’ve never heard of, so Asperger’s resources remain very useful.

What does this actually mean?

The DSM criteria may come across as so much medical jargon but in effect, this can be simplified into a number of common symptoms. AS patients are likely to find reading social cues difficult – such as identifying when a listener has become bored by a conversation. This is particularly tricky, as people with AS are likely to have strong, preoccupying interests that they are all too happy to talk about – irrespective of whether the person they are talking to is listening. The AS person is also likely to bring the conversation around to the safe territory of themselves, and their own interests rather than the much more difficult task of genuine two-way conversation.

Social ‘rules’ have to be learned and aren’t as easily assimilated into day-to-day life as they are for other people. This may come across as speaking in an overly blunt manner, or it may be something so quantifiable as not knowing how close to stand to someone. Social chit-chat is another difficulty – it doesn’t have a purpose, and for a person who needs to see a quantifiable reason for social interaction, it just doesn’t make sense. They are likely to experience a sort of ‘overload’ in crowded and noisy situations, and some experience a kind of meltdown or panic attack in these ‘trigger’ situations. In fact, many report that in stressful situations, sounds become louder, and more intrusive. This can be true of any of the senses, but touch and sound seem the most common. It may also go the other way and an AS person may experience sensory dullness, which can lead to children wanting to eat non-food objects (as their sense of taste is dulled), or being particularly clumsy. The former is something we think my nephew may experience – although it will become easier to tell as he gets older.

They are far less likely (although not necessarily) to be preoccupied with personal appearance, and are likely to exhibit categorising behaviours – for example, my nephew from an early age has been very insistent in lining his toys up by order of colour or size. They are likely to focus on small details and obsess over minor problems rather than seeing the bigger picture. Amongst other key symptoms, people with AS are likely to prefer following a strict routine, and will not appreciate plans being changed. Another key sympton is exhibiting some sort of repetitive motion as well, such as hand flapping, especially when stressed. Doing things the same way every time is not just comfortingly repetitive – it is almost a necessity. They are likely to see the world in very black and white terms, and may struggle to understand how other people can see it in another way. All in all they are likely to come across as geeky or awkward.

What causes Asperger’s and who gets it?

We don’t really know what causes it, and can only theorise as to why some people find it so much harder than others to read social cues, and behave in a manner than is considered ‘normal’. It is thought to be strongly genetically linked (and often runs in families) with some environmental factors. It is not a product of upbringing. Simon Baron-Cohen (pretty much the authority on Autism) has theorised that autism and related conditions are as a result of ‘extreme male brain’ (reference: Baren-Cohen: 1999, link to paper here) and it is certainly true that the lack of empathy and socialisation which is present in the most severe cases suggests an exaggeration of behaviours that are, when presented to a lesser degree, considered typically ‘male’. Asperger’s is typically a male condition – only 1 in 4 diagnosed are female. Increasingly this figure is considered deceptively low, and Dr Judith Gould, director of the NAS’s Lorna Wing Centre, has recently been quoted as believing the ratio to be closer to 1:1.5 female:male. The hefty lean towards male diagnosis in current figures is potentially something of a self-fulfilling prophecy – because men are diagnosed with Asperger’s, men are expected to be diagnosed with Asperger’s, and the DSM diagnostic criteria anticipate symptoms as men experience them.

Women with the condition are much more likely to be able to adapt to hide the symptoms, but also often just come across as a bit tomboyish – one of the lads. Their symptoms are disguised by this adaptability, and health professionals who are used to seeing AS as presented by young boys may not identify the AS girl as belonging to the same category. For example, lack of social imagination (broadly speaking, being able to see someone else’s point of view, being able to accommodate how they feel – in short, empathy) is one of the key diagnostic criteria. It often manifests itself in a lack of make-believe play, especially a difficulty in engaging in this type of play with other children. AS girls are far more likely to throw themselves into this alternative, easier world, and so do not necessarily get identified as presenting a behaviour which is inherently AS.

For me, as someone who married into a family where Asperger’s is more the norm than ‘neurotypical’ (and in fact live with my father in law, who I’m sure would agree with me is a pretty textbook case) it’s a day to day reality which actually affects us all very little. In a family environment very supportive of the specific difficulties of living with Asperger’s, we don’t precisely tip-toe around situations which are likely to prompt a freak out from my father in law or nephew – we are just sensitive to what is likely to be an inordinately stressful event. For my nephew, vocalising what has upset him is tricky, but becoming better. Changes of plan (or changes to his expectations) are very stressful, no matter how minor. As he has got older, the symptoms have become easier to recognise and so after several months of assessments, we have now got a positive diagnosis. AS can make life quite stressful – but it doesn’t have to dictate your whole life.

Diagnosis

Having seen my nephew going through the process of assessment for AS, I am now strongly considering getting an assessment myself. Behaviours which are now recognised in him as particularly AS are ones which I recognise in myself, both as an adult, and as a child of his age. I exhibit several of the key diagnostic criteria for AS, in particular categorising behaviours, inflexibility with regard changes of plan, repetitive behaviour in both adherence to routine, and hand flapping/twisting when stressed. I have difficulty making new friends, and a very black and white world view. More than that, I am also likely to experience the same ‘overload’ in an excessively noisy or crowded situation, such as a busy supermarket, which is at best, a bit stressful, at worst, produces something akin to a panic attack. In fact, this doesn’t always happen at a busy supermarket – I sometimes experience a similar overload just when out with friends – even if I am looking forward to seeing them. I worry and stress continually over minor details. I offend people all the time without understanding why. I don’t get people. Based on a very preliminary assessment from my mum, I also exhibited many of the developmental features of a child with AS when growing up. Once I have plucked up the courage, I’ll be going to my GP to talk about AS assessment, or if not, to discuss the cause behind the panic attacks.

I’ve wondered about AS for some time, but always considered it something of an over-reaction. It took some time and some research to get to the point where I felt that it was worth asking for assessment. The first port of call is the National Autistic Society (or NAS). Their website is full of useful information, and their helpline service is fantastic, and free, even from most mobiles. They can tell you what diagnostic resources are available in your area either for adults, or a child. You’re likely to be asked to get a referral from a GP even for a privately paid for assessment, which will be the next step for me.

I am pretty stressed about seeing a GP and don’t even have an appointment yet. Nonetheless, the NAS have posted me a series of materials and preliminary Autism Quotient tests that may make me feel more prepared for the meeting. The test won’t tell you if you have AS – the thing is that nearly all of the symptoms may be found (at least individually) in a neurotypical person. It is the severity, and the combination of many of these factors which makes a person AS. A test will at least highlight if you consider yourself to have enough of the key indicators that you may be worth further consideration. Similarly, you may not score highly on the test and still have AS – you just may cope with it well. It is not a diagnosis, but for me, was a step towards feeling confident and justified in asking for something that seems a little indulgent. The test they sent me can be found here.

Asking for a diagnosis or at least an assessment is not an over-reaction, and actually, it is not an unnecessary indulgence. A diagnosis can help fill in the blanks for an adult who has always wondered why they are a bit different. It can connect you to a network of people who have similar problems, and above all, a support network to help you cope with day to day difficulties. It is a massive reassurance to many just to know they are not abnormal, and they are not alone. Provided I get the go-ahead from my GP (which I may not) I’ll be blogging about the process of assessment and write up about the experience. If I am assessed as not having AS, this is equally important. I get panic attacks for a reason, and ruling out something that feels like a common denominator is an important step towards identifying what does cause me this stress and trouble.

The final word on AS – it is not an illness. People with AS are not ‘sufferers’. It is not in fact, a problem at all per se. It is the way you are, and many Asperger’s patients/relatives (myself included) agree that it does not require a cure. It is who you are as a person. It is your own unique perspective on the world and nobody really requires you to change it. Sometimes, Autism and AS make life difficult and complicated, and sometimes these conditions mean that patients require additional advice or counselling to live in a world as someone a little bit different, when the rest of the world appears to value ‘normal’. However, all the best people agree that there is nothing wrong with ‘different’ and there is nothing wrong with Asperger’s.

This has been a long post, but with a bit of luck, the next woman to think she may not just be going round the twist and may have Asperger’s is a little better equipped with resources to start looking into it further. Thanks for reading 🙂

Of Jam and Jerusalem

Well… mostly jam.

A few months ago a friend of mine asked me to join the WI with her. Obviously I said yes. The prospect of belting out Jerusalem at the top of my lungs was a massive draw, but too old to be a girl guide, and never really having got into rangers, I was really looking forward to joining what to me, looked like girl guides for grownups.

Thankfully, turns out I was bang on the money. Except for the Jerusalem bit, apparently nobody does that anymore. (boo)

The CamCityWI (as we have recently named ourselves) are a pretty exciting bunch – set up to be a bit less formal, a bit more creative, the group certainly has a less traditional mindset than you might expect. By the very nature of the beast it has attracted a large number of women who crochet, knit, bake, and do other ‘traditional’ WI activities – but it’s also attracted a different age group, and with it, a very lively attitude. The age range is surprisingly big – 20 somethings through 50 somethings on the whole – but where most groups tailor themselves towards retired members in what they do, where they meet, and the time of day they meet, this group is most certainly aimed at a younger demographic.

Me and the mother in law have joined, and will be paying our subs at next month’s meeting, and the mother is also seriously considering making an appearance – consider the WI the next adventure in Bruntonia!

So is there going to be any actual content in this post Amanda?

Well jam is kind of in the title, so it would seem a bit disingenuous not to talk about jam. Remember that massive glut of strawberries I mentioned we had earlier this year? Well Brunton number one and I froze plenty of them, as there were simply basketfuls that we couldn’t eat. Literally several kilos of strawberries. Now, wet fruit like strawberries don’t love being frozen – the liquid expands as it freezes, breaks down the fruit, and then when it defrosts, leaves a limp, juicy lump that is nothing like the delicious plump fruit you froze three months before.

We discovered that these make the best ice cubes in Pimm’s – keeping the drink cool and pouring out delicious strawberry juice as they melt. We also experimented with strawberry wine (a great success) but still have well over a kilo left. The raspberries are also going great guns right now, as is the rhubard plant.

Jam simply had to happen.

So this is a full on make it up as you go along recipe, but is as good a place to start as any, and nothing like as difficult as I thought it would be.

Mixed fruit jam

You will need:

• Sterilised jam jars – you can sterilise them but putting them in a cold oven and gradually heating up to 100*, turning the oven off, and leaving it to cool down. By the time your jam’s done, they’ll be both cool and sterile. Alternatively, if you’re worried about the structural integrity of your jars, use a sterilising fluid, such as Milton.
• A big ol’ pan
• A long handled spoon
• Patience

The actual ingredients:

• A couple of sticks of rhubard, chopped up
• About 150g of apple peel and core
• The rind of two lemons
• 1 kilo strawberries
• 500g raspberries
• 750 jam sugar (it has added pectin)

Method:

• Sterilise your jars first, as described above. You all know about my thing with the zombie virus. Don’t question me, just do it.
• Put the apple bits and the lemon rind in a saucepan and cover with boiling water – use just enough to cover. Simmer for at least 40 mins. This is basically a jam stock, and will add flavour and pectin later.
• Put the raspberries in a pan and heat them up. The juice will start to come out and they will go to mush. Once it’s started to reduce, add the strawberries, and the chopped up rhubarb.
• Actually pay attention to it a while – you risk burning if you don’t. Keep stirring until you genuinely have fruit pulp and nothing more. Throw in the sugar!
• Keep simmering. You want that stuff to start reducing into a jammy gunk. This is going to want at least 20-30 mins so turn the heat down and make yourself a cup of tea.
• Hopefully your tea was delish and you haven’t forgotten about your jam. It should be good and sticky, and nicely reduced. Hopefully your jam stock has also been sitting there simmering away for a good while, so strain the liquid, and chuck it into your jam (no need to keep the boiled apple and lemon, bleugh)
• Guess what? Keep simmering! To test if your jam is done, put a plate in the fridge and let it get super cold. Drip some jam onto the plate and blow on it. If it starts setting on the plate, and when you push at the blob the surface wrinkles a bit, your jam is ready to rumble!
• Get your jars out of the oven (with a bit of luck they’re cool by now) and tip in the jam while still hot, and seal straight away – this will make a good vacuum seal.

Once your jam is cool – chow down on it with all that lovely fresh bread you’ve been making since my bread posts. Obviously.

Greengage and Christmas Jam

So my friend offered me to come collect some plums from her back garden that were just going to waste. I had plans for making these over-ripe plums into delicious plum wine (if you haven’t ever tried it, then do, it’s sickly sweet dessert wine, and frankly amazing). However, when I turned up, I found a tree full of greengages.

Jam had to happen.

Ingredients:

• 1700g greengages (there were loads. You can of course scale this down.)
• 850g preserving sugar (NOT the same as jam sugar – greengages don’t need as much pectin)
• 2 tsp mixed spice
• 1 tsp cinnamon
• 1/2 tsp nutmeg

Now our greengages were very over-ripe so were already very mushy – it’s easier if the fruit is nice and mushy, but it doesn’t need to be.

• Sterilise your jars as above.
• Get the stones out of the greengages and put them in a heavy bottomed pan to mush up.
• Let them reduce for a bit, and then add the sugar.
• After reducing it a bit further, add the seasoning. We wanted this really Christmassy for gifts later in the year, but use your own discretion for how much spice to add – it’s down to your own taste.
• reduce it until it passes the cold plate test – when tipped onto a cold plate and left to cool for a second, does it wrinkle on the surface when you push it with a fingertip? If not, leave it a little longer. If yes, get it into your jars while it’s still hot. Enjoy!

Oh and one other thing.

I learned to crochet at the WI. Crochet is awesome. Especially when you can make angry birds. Ho yiss.

There’s all kind of awesomeness like this over at Ravelry, with loads of free patterns (and some awesome paid for ones at that) and you can learn to knit and crochet here (I use this constantly!). They even do videos 🙂

If you want to join in with the awesomeness that is jam and angry birds, have a look over here:

http://www.thewi.org.uk/

https://twitter.com/CambridgeCityWI

http://www.facebook.com/CambridgeCityWi

Life after suicide – a thank you post

Ok boys and girls, this is a seriously neglected blog, and I have lots of fun, adventure and food related posts coming up (I promise!) but first there are some thank yous to make. What I would like to do with this post is to say a massive thank you to everyone who supported me in my comedy charity bike ride which I did for Mind after my friend ended his own life. I started with the distant hope of raising £100 for Mind – I called my mum to ask if this was reasonable. We both though it was a little high and then decided we probably knew ten people between us who could be relied upon to donate £10.

I raised £800.

The messages of love and support on the webpage have been of great comfort to me, and many others. I am amazed by the generosity of everyone who has donated – sometimes total strangers, some even from overseas. Even recently, two people that Brunton number 1 and I know have had real issues with depression that we have been unable to talk to them about because it remains unacknowledged and taboo. This is not acceptable – and Mind is just one of many charities that is seeing that changed. I’m proud to have been able to support this amazing charity, and grateful to all the people that have made it possible. I can’t tell you all just how much it has meant to me that so many people thought this was a cause worth donating to.

Moving on

Suicide itself is still incredibly taboo, and many people are surprised at the frankness with which I tell them that my friend took his own life. I personally feel nothing for the stigma or the taboo – I knew my friend, and I know that his life is worth no less to me for the fact that he ended it. However, it has still been a difficult thing to reconcile, although in many ways it gets better over time. The abruptness of the death undoubtedly makes assimilating the loss into my life, reconciling the idea that my friend has gone, very difficult. He has become both more and less to me all at once – I worry continually that I’ll forget silly things, like what his voice sounded like. As much as it surprises me how quickly certain memories have become vague, it is as though other memories I forgot that I had have come out of hiding. Things which never used to make me think of Burgess now often serve as a (sometimes sad) reminder – things like old tape decks and record players, Neon Bible, and in-jokes that no one gets any more. I read our old emails and remember that before the depression took hold there was a rich and varied life there, and that we were awesome together.

‘Are you Twiglet?’

The thing that actually makes me the saddest is the loss of my nickname – only Burgess ever called me it. It was funny (and awkward) when my suicide note was addressed to ‘Twiglet’ with an accompanying note saying ‘someone please call Twiglet’ and my number. Unfortunately no one knew who the hell Twiglet was and I was saved in his phone and address book as ‘Twiglet’. When the police eventually called there was an awkward ‘are you Twiglet?’ conversation that was so funny I wanted to be able to tell Burgess – it was only when I realised I couldn’t that the enormity of what had happened hit me. Now no one gets to call me Twiglet, and it surprises me every time how sad that makes me. I’ve also learned that it is not appropriate to laugh hysterically at being called Twiglet by a police officer. I think I weirded that poor lady out more than a little bit.

I’m sure any of you who were close to Burgess (and even some who weren’t) will relate to the feeling that it never feels like the right time to ‘move on’. I find myself thinking I wish that his death would just stop making me sad, and then feeling terribly disrespectful because it should be a sad-making thing. I’m reliably assured this is all part of the process. The sense of loss doesn’t really go away – you just get used to the weight of it on your shoulders, get used to the feeling that he is actually gone. Burgess used to refer to suicide as ‘leaving’ or ‘catching the bus’ and it never really felt like a permanent thing, almost as though you could just be dead for a while until you got better, like some kind of extreme rehab. Having spent months talking about suicide this way, I had almost become desensitised to what suicide would actually mean, and the permanence of what he had done to himself came as an awful shock. It makes it hard to accept that until we meet again in the great Western Bank library in the sky, this is it. I’m gradually getting used to the idea of life without my pal – it’s a slow process, but I’m getting there. I wish all the best for anyone reading this who is going through the same.

Continuing support

No one deserves to live a life so troubled that they feel as though they need to take their own life, and no one deserves to lose a friend that way – just as no one deserves to die of cancer, or AIDs. That’s why I’ll probably continue to make regular donations to Mind.

My page is open to one-off donations until the end of the month, so anyone who thinks that cycling over 25k in the rain dressed as princess Leia with accompanying R2D2 merits sponsorship there’s still time to rock up and sponsor me.

http://www.justgiving.com/Amanda-Brunton

There’s also a main ‘In Memory’ page where people can continue to do ‘In Memory’ sponsorship events and read all the lovely comments people have posted, or donate directly to Mind.

http://www.justgiving.com/remember/20094/Alex-Burgess

So thanks to all the generous people who made this all possible (you’re all awesome!) and thanks to all the people who’ve been instrumental in helping me through this difficult time (you all get a pat on the back).

Burgess would be super embarrassed by all this fuss, but doesn’t get to do anything about it, so here’s a chirpy mugshot of us both 🙂 We made an awesome pair!

On depression, suicide, and Star Wars fancy dress

Just before our graduation

And so it starts…

Beginning to bear a resemblance to a certain little astromech!

The finished article

For those of you who know me, then I am sure this post is only going to describe an event I am sure you are all aware of. However, the blog is increasingly getting views from outside of  my immediate friends and family, and so I shall start at the beginning.

8 weeks ago one of my closest friends took the decision to end his own life.

I have not been totally truthful here – this is not the beginning of the story. However, poor mental health is such a taboo subject that it is often only from this point that friends or family become aware that one of their loved ones is suffering from a potentially life-threatening illness. The days of ‘The Big C’ are long since over; cancer is no longer a taboo subject which simply cannot be mentioned in polite conversation, and has to be hidden away by the sufferer. Yes, it’s frightening. Yes, it can feel defeatist, or like weakness to admit to those around you that you suffer with an illness that you cannot hope to fight without extensive treatment, and that you are afraid of the outcome. However, sufferers of this (often long-term) illness are quite rightly treated now with the respect and sympathy they deserve, rather than fear and shame.

My hope is that one day, depression and mental illness can be given the same respect. It is an illness which is not, on the whole, the fault of the sufferer. Nonetheless, the stigma associated with it dictates that the sufferer is often treated as though they can just ‘cheer up’, as though there is some blame to be apportioned to them for their suffering, or that treatment is an unnecessary luxury. Attention seeking somehow. Consider for a moment how it must feel to be afraid to die of cancer – an illness that you as an individual are powerless to stop. Now consider what that fear of death represents when you are afraid you may simply do it to yourself, and feel equally powerless. You expect nobody to take your fears seriously, and moreover, in order to receive treatment you have to beg, explaining over and over what you fear you may do to yourself. For many, this is a terrifying reality from which suicide provides the ultimate relief.

So what really happened?

The more truthful account of my friend’s life and death is this: he was a wonderful, talented, intelligent young man. Despite mental and physical illness of a severity that would have rendered a less robust person incapacitated, he achieved an outstanding 2:1 in English literature from a top university. He was a dedicated friend, a maverick, a lover of gin and a thoroughly entertaining person to be around. He had terrible taste in music, clothes and wine. He was high maintenance. He needed continuous emotional support to continue to live life as normal. He didn’t like to ‘be a burden’ to those around him, and although he was often hard work, he was an equally generous friend in return.

The last eight months saw an accelerated worsening of the depression, anxiety, and physical illness from which he had suffered for many years. His ability to go about day-to-day life was eroded a little bit at a time. Occupational health forms require that you declare mental health problems – they also ensure that you are almost unemployable. Mental health’care’ on the NHS is a total lottery depending on funding. In my friend’s case, he was sent home from hospital with a self help book when his therapist said that his suicical feelings had become out of control. Two weeks later he was found dead.

The mother of a close friend of mine is a mental health nurse, who describes a mental healthcare system almost entirely propped up by charities. These charities are having their funding systematically cut back, yet no state-sponsored health service has taken their place. Hopefully no one reading this blog will ever have to experience what my friend suffered – the humiliation of begging for help, while suffering with one of the cruellest illnesses of them all. However, the sad fact is that one in four of us will suffer from poor mental health. Even if you don’t experience it yourself, odds on someone you know will.

Why am I telling you all this you may ask.

Because something needs to be done. The hardest part about all this is that my friend isn’t coming back. We couldn’t save him. All we can hope to believe is that he is now experiencing in death the peace that he desperately wanted in life. This doesn’t solve the fact that for many out there, they are still living out the reality of mental illness without adequate support, feeling unable to express to those around them the suffering they are experiencing.

In just over a week I will be cycling 20k on my 35 year old, beaten up Raleigh shopper. I’m doing it dressed as princess Leia (I decided to auction off the right to pick my fancy dress…) and I have made a home made R2D2 to put on the back of the bike for running repairs. Mental illness isn’t always depressing. My friend would be laughing himself silly if he knew I was doing this now! I’m doing it for the charity Mind, as it helped support my friend and I through the worst of times. The most important thing they do is make mental illness talked about, and make help accessible. If you want to donate, hop on over here:

http://www.justgiving.com/Amanda-Brunton

Your support will be very much appreciated, but more importantly it’s the attitude that’s got to change. People have got to start seeing this as a real and treatable illness. People have got to stop believing that it is the fault of the sufferer. And above all, we have to start prioritising mental healthcare rather than letting vulnerable individuals fall by the wayside.

Rant over – normal cheery, food-related service will return with the next post 🙂