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

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Asperger’s part two: getting a GP appointment

Not necessarily the most challenging bit of the process (depending on the surliness of your GP receptionist I suppose) but nonetheless an important bit. If you’re anything like me, dear reader, then going into the unknown without an armful of notes and preparation is unthinkable. In fact, it probably is best to go prepared into a consultation where instead of turning up with a set of symptoms and asking the GP what they reckon to it, you are turning up asking for a referral. So what do you prepare?

You at your worst, you at your best

In getting a diagnosis for the nephew, my sister in law and her husband felt as though they were really over emphasising their son’s difficult behaviour in order to get across just how bad a bad day could be. This is in itself sort of the point – how ‘well’ you are is very relative but how unmanageable your bad days can be is almost more important. I can act like a normal human being and deal with people and busy supermarkets on a good day. But the fact that this is a ‘good’ day suggests that maybe this is a different measure of ‘good’ to everyone else. It takes effort and is actually tiring for me to keep my cool in a crowded environment. Hence it needs to be a good day for me to manage it. This is standard for other people. So a bad day is very bad. It involves irrational freak-outs, panic attacks, tears before tea-time and a lot of stress to do things which I feel are normal day-to-day activities for other people.

However, I understand that biting people at Sainsbury’s is wrong, no matter how satisfying, so I attempt to refrain from freak outs where possible. So in describing my day-to-day behaviour to a GP, I am an articulate (reasonably) intelligent young woman who manages not to bite people. I don’t want to describe myself as a nutter, but nonetheless, it’s the fact that I have these irrational freak-outs which is going to be important in getting a diagnosis, or an explanation of the strain it takes to be ‘normal’. So although hamming it up doesn’t come recommended, being honest and open about what you find challenging is ok. It’s important not to feel ashamed or ungrateful or whatever else – just tell it as it is.

My nephew’s parentals found it easiest to keep a diary of their son’s difficult behaviour day by day (so ‘as it was happening’ as possible) so that they had something as close to evidence to show as possible in order to stop it appearing like rambling. I’m also taking this approach to give some kind of empirical back up to my statement.

Call in reinforcements

I’m taking my husband to this appointment. He’s the only neurotypical member of the family, and he sees me at my worst and at my best, and is very supportive. He can ratify what I have to say, and he can tell me when he thinks I’m exaggerating what he thinks was actually a minor problem. He is my perspective and my backup, and we can discuss the outcome afterwards having both sat through the same conversation. So if it helps, take someone who knows you well.

Decide why you believe you are worth assessing

You obviously think you are worth assessing if you are considering it, so try to bring this into a few key points or behaviours. The NAS recommended to me trying to use one or two from each category of the DSM-IV (a diagnostic criteria for Asperger’s. You can read it in full here on this post). This condenses what you are talking about into some recognisable criteria. I’ll probably try and have a few spare in case some are contested.

Even take a basic Autism Quotient assessment. It’s not a diagnosis but a high score definitely suggests you are worth assessing. A low score doesn’t mean you’re not worth assessing at all, it is just an indicator. But for me, a high AQ score leaves me feeling more assured going into an appointment. I gave a link to an AQ test in the post linked above if you’re interested.

What would a diagnosis mean to you?

This is not such a silly question at all. My father in law is almost certainly AS. It runs in the family. Nonetheless, feeling sure of a diagnosis is enough for Pa and he doesn’t feel the need to go through the stress of a diagnostic procedure. Perhaps because he was older he felt less like he had something to prove/gain by getting a diagnosis, so this has always been enough for him. For me, I think I have a lot to gain by a diagnosis.

It adds a narrative and an explanation to why I have always been weird. It connects me to a group of people with a similar set of problems. It gives me access to adequate health care and advice.

For some people adequate care and advice is self diagnosis. For others, it’s just knowing for sure something you’d suspected that can be amalgamated into your personal identity. For others, this may involve counselling or extended advice and support. For me, it’s largely a case of justification, and probably also advice on dealing with freak-outs.

It’s actually important to me as well that things which I had only ever really considered as failings may now be re-evaluated as successes. Yes, normal people find Sainsbury’s at worst, a chore, at best,  a trip to buy some shopping. For me, it can represent anything from an evening of stress, to a full on panic attack. But if it were expected of me that I would find that a challenge, to come out ready to fight another day is a small victory rather than a non-event. To have a panic attack is no longer a failure, or an abnormal thing to do. It’s just normal for Asperger’s.

You may be asked to justify why you’re asking for a diagnosis, so this is important to bear in mind even if you have the most clear cut of cases.

So prepare as much as makes you feel comfortable, relaxed, and in control of the situation. Go into the consultation with clear aims, and ask for justification if you don’t feel satisfied with the conclusions at the end.

Above all, I’ll let you all know how it went after Friday.

Also, contact the NAS if you want any further advice – they can give you all manner of stuff for both you, and your GP and are full-on heroes.

http://www.autism.org.uk/

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 🙂