Wot a kerfuffle! – Three kinds of support

The pros and cons of the ‘support worker’.

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Photograph of my own DVD so the BBC can’t sue me…

Back in the 90s when our condition was first becoming well known under the now virtually obsolete banner of Asperger’s Syndrome, people like your author had to rely on the support of fellow ‘sufferers’. Come the early 2000s we were starting to get given help of the kind previously only given to those considered far more disabled than ourselves. Like the famously put-upon carer Lou Todd in Little Britain they had their little ticks and catchphrases that supposedly made them endearing. I had one of the ‘help getting back to work’ variety who would end every session with “I just need your squiggle on there.” He even liked some of the same music as me which seemed ironic considering music was where I always took refuge from the insane world of Special Needs in my confused teenage years.

I had others later and have support of sorts now and mercifully they’re much less cheesy than that.

But now that we live in supposedly more enlightened times, what are some of the pros and cons of the so-called ‘support worker’?

Here are a couple of definitions from the Autistic Hermit’s Dictionary (which doesn’t really exist but there you go).

Support: Something or someone that holds you up.

Hold up:

  1. To keep from falling
  2. To obstruct and/or delay. Either can be applied in the above context (see Support).

Support can take several forms.

  1. Finite support: A worker is assigned to you, usually to assist either with domestic skills or with the vicious circle of gaining jobs only to lose them again. They are guaranteed to act superior to you even if this means doing it in a kind way. They can work with you for between 4 and 12 weeks. At the end of this period you are expected to either:

a) Be so sorted that you no longer need help.

b) Have proved yourself to be a lazy sod.

c) Have proved yourself to need infinite support (see 2).

ADVANTAGE: Lights a fire under your backside.

DISADVANTAGE: Encourages anxiety and potentially creates an unhelpful pressure similar to that experienced by autistics in the workplace.

2. Infinite support: A worker will be assigned to deal with you week in and week out regardless of how well you are doing. This often takes the form of psychoanalysis for the undiagnosed – you have to fight to be free because you know you’ll always be a bit ‘different’ and all the therapy, psycho, occupational or otherwise in the world will never change that.

ADVANTAGE: Always there when needed.

DISADVANTAGE: Always there when not needed.

3. Bespoke support: Like your GP, your support worker will simply be happy to make an appointment with you as and when you feel it necessary. This may lead to a regular series of appointments but may also continue to take the form of occasional visits as and when the client feels it necessary. This form of support is ideal for those who have no desire to be forced to conform within a limited period (see 1) or to be treated as if their needs were never going to decrease with time (see 2).

ADVANTAGE: Works entirely within the client’s needs.

DISADVANTAGE: Doesn’t exist.

M. Pathy at your service

The rule book has been rewritten of late regarding us autistic types and empathy. The theory used to be that we usually lacked it and particularly in the more extreme cases. The new trend is towards saying we not only are capable of empathy, we feel it more deeply than most.

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As usual I will be taking the view that the truth lies somewhere in between and using personal experience to try and back up my point.

THE NO EMPATHY THEORY: Perhaps this is used less for us Aspies than for the more extreme forms of autism. But my own condition did have more extreme manifestations in my early years. According to both dearly departed parents I “treated people like objects”. I guess that means I shoved past people or gave unwelcome hugs or something. But I do remember getting a kick out of watching reactions – it pains me to think of an event at my nursery where everyone’s parents but mine seemed to be there and I had no understanding of what was going on and decided to get kicks by shoving toddlers over and watching them burst into tears. The teacher told me very politely to be careful but I knew my own maliciousness and it’s not a memory I’m proud of. I have sent prayers up that in adulthood those former toddlers would be healed of any emotional scars remaining but it shows that empathy can develop over the years if nothing else.

THE EXTREME EMPATHY THEORY: Flash forward a few years and I’m at an independent primary school on the continent (English speaking). Looking at my first report (aged five) it mentions a few pronounced eccentricities but also says that Christopher “cannot bear to see another child in distress and tries in his own way to comfort them” or somesuch.

Crying. Witnessing someone cry is the easy end of empathy (though I have heard of autistic husbands failing to comfort their wives when in distress). We’ve all cried. We all know something of the emotion that leads to us bursting into tears even from our early years when the experience of something like a bumped head is more of a shock to the system than it would be in adulthood. We know, unless we’re the kind of autistic who hates physical contact (which I’m not), how we appreciate the comfort of having an arm slipped around us, whatever has caused the distress. There is a feeling of not finding it easy to witness someone else’s distress but there is also what our own experience has taught us.

But that’s the easy bit. That’s where we don’t have the subtleties to cope with. Where the rubber hits the road is in terms of understanding the feelings of others when not explicitly stated. This is the classic autistic thing – not understanding what is communicated in less than obvious terms with the assumption that we will put two and two together, join up the dots or whatever.

There is also a struggle, for myself at least, with remembering, in more impatient moments to consider my reaction and think “How would I like to be on the receiving end of this?” One only knows how to be oneself. I hate when the person in front of me in the queue at the local store, bus stop, train station etc takes ages getting hold of what they want and find it nigh impossible at times to contain the groans. But when my own order takes more time than usual to process, I have to remember that were someone behind me to start groaning Autistic Hermit style, I would struggle to hear what the (wo)man at the counter was saying and probably have a meltdown myself. I only know how unbearable my own feelings are at any given time – it takes mental effort to consider the other person and keep patient. I can’t handle being interrupted in conversation but I also know what it is to feel so grossly misunderstood or talked into a corner that I cannot hold my peace and make an interjection myself.

So my conclusion?

  • Empathy can, in less extreme cases of autism, be learned even if it does not come automatically.
  • Empathy lacks most in more subtle situations where we do not always realise how our words and actions will be taken.
  • Empathy is an ongoing issue for us, either we have more of it than we can handle or we just can’t muster it up – it’s feast or famine.

AFTERTHOUGHT: And what about you lucky neurotypical types? Are you all A1 when it comes to empathy? When it comes to relating to the Aspie, the answer is probably not the one you want to hear. Those who get a kick out of our extreme reactions to distress or parade our weaknesses like they were something we took for granted rather than something we were keen to overcome are not our idea of good friends, regardless of any generosity or kindness they show us in other ways. In this instance, who lacks the empathy? Doesn’t take long to guess, does it.

 

I Cannot Tell a Lie… or can’t I?

It’s a popular belief that people with autistic disorders are incapable of lying. This Aspie would beg to differ…

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Whoever said Aspies can’t lie? The theory would seem to originate from the Aspie tendency towards literalism and pedantic degree of factual accuracy – for example insisting that Bohemian Rhapsody came out 40 years ago rather than the more strictly accurate 41 at the time of writing.

Of course such a question might be more requiring of a literal answer if one were asked “How long ago did that record come out?” whereas the more general ‘40’ would be more likely to be used in terms of a question like “How much do you think the influence of the song and its video are felt now, 40 years down the line?”

It took a while for me to develop in this regard. One does eventually learn that such exacting terms can make one look like a nerd and don’t work towards assimilation in a world where the motto is that “He who thinks by the inch and talks by the yard deserves to be kicked by the foot.” (Yes we can do humour – see here if you doubt that).

But can we act to deceive should we wish to? Of course we frickin’ well can. Unless we have especially neurotic issues with scruples as I did back when even a cover story to conceal the fact of a surprise party for the person being spoken to, or even to preserve someone’s life was totally contrary to my conscience.

Oh yes Aspies can lie. We can exaggerate our condition. We can use it as an excuse. If you’re anything like me then you can try to deceive yourself, in a conflict situation, that you didn’t understand what somebody said when the truth is it meant exactly what you were afraid it did. We can make a psychological reaction to it sound like a symptom, only for a more desirable set of circumstances to show that yes we blooming well CAN do whatever it is. Note to neurotypicals – do not make assumptions about what we can and can’t do, I’ll deal with that in another entry someday.

The late Marc Segar used to talk about what he called ‘deception strategies’. This meant basically trying to assimilate into society, conceal one’s idiosyncracies and even one’s specialist subjects i.e. obsessions. I don’t believe in that to the same extent that he did but again that’s a topic for another time,

But I believe it proves that yes we CAN lie when we want to. Maybe not when it comes to our incurable obsession with exactitude but certainly when we feel a strong enough desire to protect our own interests.

Three diets – Part 3: The gluten-free option

1981-82: The milk and eggs free diet
1988-91
: The milk and yeast free diet (also caffeine, chocolate and dust mites).
21st Century: The diet that cried wolf…

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Photograph taken in Pennsylvania, June 2013

And so I entered adult life freed from allergy diets and wet beds. Eventually I started going to parties – nothing wild, just housewarmings and suchlike but at one of those I got chatting with a mate who knew his stuff about health and diets. He noted that I still had acne at the age of twenty (one workmate dubbed me Zitty McLean round that time) and asked if I was allergic to anything. I told him about my troubled past and the on and off diets and he told me that when an allergen is imbibed consistently, the body sort of pretends it’s not there for a while but it later manifests in things like zits hence why acne often breaks out in teenagers. He also told me that Dr Wong’s methodology (see previous entry) sounded rather like divination – doctors who share my Christian persuasion have said the same. My mother confirmed the former point about acne and “masking” as it’s called when the allergies go into hiding. “Dr Wong said you’d always be sensitive to these things to some degree anyway”. She rejected the divination theory as she still held Wong in high regard for seemingly curing me of enuresis, conveniently forgetting that I had another nocturnal incident or two in the weeks subsequent to this.

But subsequent years have seen more information come to light. I will begin by referring to the work of one Dr Adrian Morris, an allergist based in Surrey. The full article to which I refer can be found at http://www.allergy-clinic.co.uk/introduction-to-allergy/controversial-tests but I was interested to note the following points from it:

Hair analysis: It transpires that when the lock of hair reaches the testers, it is checked for the presence of lead, mercury and suchlike as well as whether elements like zinc and magnesium are lacking. This would appear to partly explain why when I was on the “lock of hair” diet I was having to take zinc and calcium tablets and for a while dolomite as well. I seem to recall these tasted gross and I was relieved to be relieved of them when my mother discovered they contained milk. But according to Dr Morris, “Numerous studies have failed to find any accuracy in hair analysis diagnosing allergies”.

Muscle testing: The Dr Wong method of testing the shoulder strength with a vial of the suspected allergen, a technique known to the professional boffins as Applied Kinesiology, I now discover. It transpires that the method was devised in the US in 1964 and relies on “energy fields” which sound like they belong in science fiction. Again though, Dr Morris confirms that “There is no convincing evidence that this test has any useful role to play in allergy diagnosis”.

But even having heard of these, I now gather that there is an autism friendly diet. Not of the kind that blames autism on vaccines or views autistic traits as allergic reactions but rather the view being postulated here is that one physical trait of us autistic types is that when we imbibe gluten (found in wheat) or casein (found in cows milk) the body doesn’t break them down and by some process this causes bad behaviour in autistic children.

If I were to take the above to heart I would be on a “no milk no wheat” diet. So bread would be back out (unless it was gluten free) but I could still have my pint of cider without fear of yeast causing reactions.

Isn’t it weird though that of three diets, the two I was forced to try as a child and the one I’m not sure I can be bothered to as an adult, the only thing all three have in common is their exhortation to avoid dairy products.

It has to be said I do sometimes find that imbibing vast quantities of dairy produce can sometimes cause mild digestion problems (pre teens I was very sensitive to milk straight from the cow at my uncle’s farm) and overdoing it in the bread department can make me feel sleepy. I can see the need to maybe moderate or gradually steer away from these. We live in a different world now from the one I was forced to function within in the 1980s and diet-friendly produce is no longer confined to the health food shops but has dedicated shelves in the supermarkets. Soya milk, which tasted gross back then (Johnny Ball proved it on his Think Again programme, I’d already discovered it for myself) now has an element of sweetener added to it though whether sugar or an artificial product I don’t know.

But do you know what? I can’t be bothered to do the whole total abstention thing again. I cannot keep constantly switching the no-milk diet on and off like a light, alternating between cold turkey and carefree indulgence. I can see the need to be minimal and only have things like macaroni cheese as a special treat. But I still have a drop of moo-moo in my cup of PG Tips (apologies to all you vegans out there). This diet, after all, which not all autism specialists entirely recommend (see http://www.autismspeaks.org/node/112986 for the view of a Dr Kent Williams in Ohio) is not seen (I hope) as a cure for autism, merely an alleviation of some of the symptoms.

So my conclusion? Know your body. Know its reactions. Don’t go by phantom non-existent evidence that relies more on hair and muscles than outward behaviour. Know that whatever you abstain from it may be that it’s not causing quite the problem you think it is cf abstaining from bread would that be helpful to me because of the yeast factor as Dr Wong would have it or because of the gluten element as the likes of Luke Jackson maintain? Dr Williams’ article provides an excellent in depth analysis of this point for those who wish to investigate further.

In short, if I ever do try the gluten/casein free diet then the diet will be my servant. Not my master as in days of old.

 

The article “Allergy tests of no proven value” quoted above is copyright Dr Adrian Morris 2008, 2012, 2015.

 

Three Diets – Part 2: The yeast-free option

Six years after the miserable milk and eggs free diet that seems to have little effect, the undiagnosed Autistic Hermit, now a teenager, finds himself back on health food shop products again but this time with a slightly different requirement.

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One issue that had dogged me throughout childhood was the fact that my enuresis* was not letting up.

It was only at the age of twelve that my mother finally concluded that we should consult my GP about it, not least because there was a school field trip coming up. For the next two years I was taking stuff called Tofranil on a nightly basis. I later learnt that Tofranil was chiefly used as an antidepressant though how a pill that controls urination can also boost serotonin rather eludes me.

Anyway after two years worth of that, and still no complete victory, it was decided to take me to the boffins in London. A few months on something called Ametryptaline had the rather undesirable side effect of making me fall asleep in class, most notably on the German exchange trip to the amusement of the native pupils and the embarrassment of my classmates.

But before I knew it we were looking down the allergy avenue again. First off a boffin in the northern part of the capital put drops of extracts of various foodstuffs into my skin and pinpricked them, concluding that raised bumps were proof of possible allergies. A few weeks later my mother and I were in the offices off Harley Street of Dr Wong**, a specialist in alternative medicine. Dr Wong’s method of assessing these things was to get you to hold a test tube full of the extract in your left hand while you stuck out your right arm and he tried to push it down. The stronger your resistance to this, the less sensitive you were deemed to be to the foodstuff in question. So keen was I to not have to abstain from my favourite foods anymore that I resisted his push very firmly to the point where he would fall and reel backwards, trying to keep his footing.

I was taken to see Dr Wong* regularly for the next three years and had to take a cocktail of things like Evening Primrose Oil every night as well as putting drops on my tongue from a pipette.

Back in the days of the lock of hair diet it had been milk, eggs and chicken I had to avoid. But Dr Wong* said I was fine with poultry, now it was milk and yeast that were off limits. So I could have hard boiled eggs with my school lunch and the presence of ingredients like “dried egg  yolk” was no longer to be treated like an 18 certificate at the flicks. But back into the diet came Vitaquell (dairy free margarine) along with new arrivals such as soda bread and rice cakes. I could only have fresh fruit juice if it was from freshly opened cartons and had had no time to ferment. My nan rather wondered why on a one night stay I sampled all three of the cartons she’d bought. Alcohol was a no-no (agony for a teenager), water had to be filtered and, owing to a perceived sensitivity to dust mites, I could no longer have our cats on my bed (though I was free to stroke and hold them). I woke early one Saturday morning to hear Sage our half-Burmese crossbreed yowling outside my door and kept reluctantly saying no. This was in the early days of the diet when it was only meant to last three weeks. It lasted three years in the end and much of my resistance crumbled.

As you will have guessed, I didn’t adhere to this diet very rigidly. I guess I was thinking “Oh for pity’s sake, why are we back with all this again?!” But now that I was responsible for informing kitchen staff etc of these matters myself I would indulge regularly in spite of frequently asking if the dish being served contained any milk or yeast. And somehow I had not developed the skill of considerateness to at least exercise maximum caution when staying elsewhere. I still remember my nan moaning “Oh Christopher, why?” when it happened for the third time in a week when we stayed there.

But really it was all very random. For example on the trip to Norfolk in the summer of 1989 I managed to be bone dry all week despite indulging in bread and other yeast-containing substances (including having my orange juice spiked with vodka when we made a sly trip to a pub).

Eventually, about a year after I had left school, I told Dr Wong I’d had enough. By now I was seventeen and old enough to go by myself so in the lack of witnesses I don’t know if I misunderstood anything but he ran me through the tests and told me I was free to go free but just to go easy on the chocolate.

As for the problem it was all meant to be addressing in the first place, I only recall one more wet bed, about a month later, mercifully at the home of a very understanding relative.

A delayed reaction? Or just a natural cessation of the problem?

My conclusion will be revealed in Part 3.

*For the uninitiated, enuresis is the medical term for wetting the bed.
**Name has been changed.

 

Three Diets – Part 1: The egg-free option

The first of a three-part reflection on autism and diet from personal experience.

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At the age of seven I was already finding it more difficult than I admitted to settle into a new school where little did I know I had been put a year group ahead of where I would normally be along with four others in my class, owing to a restructure that was due to happen later that year. It was already pretty difficult to suddenly be told one was too old for the majority of one’s storybooks and to have to pretend one enjoyed drawing pictures of Roman soldiers and sabre-toothed tigers.

But there was a harder struggle to come. One night at bedtime as we had our chat (which I sometimes preferred over a story) my mother announced that I was allergic to milk. I had never heard the word ‘allergic’ before. But as the conversation went on it transpired that most of my favourite foods had been deemed bad for me owing to the presence of milk. Macaroni cheese, ice cream, almost all chocolate… I wept as I was told this and the following morning had the displeasure of witnessing my mother write a letter to my teacher to make sure I stuck to this rigid new diet and that the dinner ladies would be armed with the line “No you can’t have that dear” for shortbread etc, which didn’t help when you consider that the school’s diet was totally vegetarian, consisting mostly at the time of lettuce and hot mush and therefore pretty limited anyway in terms of things I liked.

I had no idea what all this was about really. Mum said it had something to do with a lock of my hair having been analysed. Some months later I asked “What happens when I eat something I’m allergic to?” My mother’s reply was along these lines. “Well all the bits of the food go to the parts of the body and the parts of the body say “We don’t like it, we don’t like it” and it makes the person very unhappy.” It was even assumed that my non-stop crying as a baby was because of the milk I was being fed at the time.

As the year progressed it was decided I was allergic to poultry as well so chicken and eggs were out of the window. One day at school, the dinner ladies naively told me that they had checked with the school kitchen that no forbidden ingredients were included in the sponge pudding. I was pleased to tell my mother this that evening but as soon as I broke wind audibly she said “I bet it’s that sponge pudding… next time they offer it to you tell them I said you may not have any!”

It  was only in later years that I discovered that this change of diet was to try and discover the source of my learning difficulties. I only became aware of this in conversation with an old friend of my mother’s some years after her death. “Yes your mother was trying lots of things… therapy, diets…”

“Diets?” I remarked. Then I suddenly remembered. And it all made sense.

At the tender age of seven the only thing I was acutely aware of being a problem was the fact that I was still afraid of lots of things. It had taken the best part of my life up to that point not to be obsessively spooked out by the sight of the moon or feel everybody’s footwear was pulling faces at me – I resisted going into Clarks until I was five. I guess I was aware I was also what one might call ‘eccentric’ and struggled with PE at school and I knew I was seeing a psychoanalyst ostensibly to “talk about [my] feelings”. But never was I told that this diet was intended to be a panacea for it. The possibility of autism had been considered but seemingly rejected as I grew out of some of the more drastic manifestations of the classic traits and there was then little concept of there being maybe varying degrees of autism.

When I talked about it with my father in the years after Mum’s death he told me he thought the lock of hair analysis stuff was rubbish (a valid opinion given he was a scientist) but that Mum was desperate and that he had caved in and allowed her to pursue this lead.

At any rate, it wasn’t a cure-all and I believe the general feeling that everything was forbidden and I was staring into a long miserable future caused me to take refuge in eccentric behaviour rather more than usual. A perusal of my father’s journals recounts a day he and Mum could hear me clattering two jelly moulds together around that time – I had become obsessed with food and thought about it constantly.

It was a few weeks after that that I was ultimately relieved of my ordeal. My father reminded me of the details of it in his later years. It was the Tuesday of half-term and we were in London for the day seeing St Paul’s Cathedral. Apparently at some point I’d seen an ice-cream seller and begged for a one-off treat, and at Dad’s persuasion, Mum tentatively agreed to an experiment. When there was no adverse reaction, I was reprieved from the no-milk diet with immediate effect.

Finally a forbidden pleasure had become permitted again and I was free to focus on my development without having to avoid anything at lunchtime, with the initial exception hard boiled eggs (I think that must have been the flatulence). Even then Mum had to come into school and tell the dinner ladies they didn’t have to say “No you can’t have that dear” anymore.

My behaviour improved and my eccentricities less pronounced around that time. Also being with kids who’d just moved up from the year I’d had to skip made me feel somewhat resynchronised and life became happier again. There’d be another diet in my teens but that… is another story.

Aspie Flakes – Free Gifts in Every Pack

A lighthearted look at co-morbidities.

 

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Us autistic types are often considered flakes and weirdos.

You might call us Aspie flakes. You might even say each one of us is like a whole box of flakiness. You might even capitalise the F and make it sound like a breakfast cereal. Aspie Flakes anyone?

And inside every box of Aspie Flakes (or should I say inside every individual Aspie flake) is a free gift.

It could be:

  • Obsessive Compulsive Disorder: Autism/Asperger’s are obsessive disorders anyway but OCD is distinguished by the compulsion to do either what you fear doing or to fanatically protect yourself against the worst. More about this another time (if we’re spared).
  • Dyspraxia (usually one in every pack): Just a posh name for poor co-ordination as far as I’m concerned. Poor co-ordination is one of what I was taught were the five key points of Asperger’s anyway so I never saw any point in getting a separate diagnosis of it anyway.
  • Attention Deficit Disorder (the lucky ones get hyperactivity thrown in absolutely free). Again not something I’ve ever been diagnosed with but I needed extra time in my GCSEs and household chores can prove challenging when they mount up.
  • Anxiety: Don’t know that I’d match NHS criteria for this but I know what it is to dread getting up and going to work for fear I’ll only remember 9 important things out of 10 and get bollocked for forgetting the tenth. This has happened on more than one occasion in more than one workplace in my case. 
  • And many more besides…

These conditions can exist without the individual having an autistic disorder and vice versa. But in many cases it’s so easy for them to ride on the coat-tails of the classic symptoms of autistic disorders.

I’m no scientist. I can’t explain the genetic or chemical links between autism and these other conditions. I only know that the posh term for these additional conditions we suffer from is co-morbidities.

In future blog entries I hope to have a look at some of these and how they have manifested in my own life as well as perhaps those of others too.

Of course I may get a better idea and never get back to this one (rather like how George Michael never did a Listen Without Prejudice Volume 2). But hopefully in this little attempt at a comic vignette I have highlighted something of how autism can bring other disorders with it.

So sweetened with a little humour and the milk of human kindness, we wipe the sleep from our bleary eyes, and look into the carton and under the bag of Aspie Flakes.

And hopefully with fewer crappy cereal puns.