Aspie and diabetes: how to manage hypos???

[Diabetic_Aspie]

Hello,

I'm new here, this is my first post, although I've been lurking around for a while now.

I very much hope SOMEONE could help me with a bit of advice.

I'm a junior doctor with Asperger's; I was diagnosed with T1 in 2011. For years, I have been managing my hypos at work in a certain way: once I feel low, I pop out immediately to my car (parked right outside of the entrance of a small hospital), take sugar and rest in the car for about 30 min. I had this routine worked out, nice and good, and no problems for 3 years. Then, my supervisor alleged that I left work early whilst I was actually in the car with a hypo (after which I returned to the ward and finished all the urgent tasks before leaving 2hrs after my work day officially ended).

And my nightmare started. You see, one thing important for an Aspie is ROUTINE. I have my hypo routine, and it works just fine. But the hospital has now banned me from following my routine, because they are"concerned about my welfare and safety". Right. Occupational Health is sympathetic to my Asperger's and how it affects my ability to make a change, but after asking around other Occupational Health consultants they just shrug: everyone thinks it is too dangerous for me to recover in my car. They suggested that I should have access to a private room to recover, but my employer doesn't have one (it is a SMALL hospital). One of my supervisors suggested that I use the TOILET!!! Another, said that when I'm feeling hypo, I should FIND a free room and use that room to recover!!! I effectively feel forced to run my BG higher when at work, just to avoid hypos. My employer knows and is happy with that. When I did have a hypo at work a few months ago and went into my routine on an autopilot, they nearly made that into a disciplinary issue. They just don't seem to have any understanding of either ASD, DM, or hypos, and how it all works to affect your cognition and planning ability when you are in the thick of it.

Please, if you know anyone who has been in s similar situation, or if you could offer any advice on my situation: HELP! Post your reply here, or PM me, or anything... please just help if you can.

 

[trophywench]

This is an Employment Disability issue right enough! You have two of em - A and D. I presume they know FULL well about the Asperger's as well as the Diabetes. They therefore are absolutely OBLIGED by Law to make 'reasonable adjustments' covering both aspects of your disability.

Actually - I agree that alone in your car is by no means an ideal place to recover from a hypo - but there again what do DVLA say if we feel hypo whilst out on the road, driving?

They tell us to pull over safely asap preferably 'off road' an a handy carpark or lay-by, remove the ignition keys and get into the passenger seat, test, treat the hypo and sit and recover or better still get out, lock it and sit somewhere else away from it until recovered. They are not a bit worried that we are alone - they simply don't want us to be in any danger of being accused by the Police of being in charge of a motor vehicle whilst under the influence of drugs.

Since a whole Panel of qualified doctors in the UK have reached the conclusion that it is OK to be alone in our own car recovering from a hypo - your employer does not seem to have adequate grounds for their beliefs as far as an Industrial Tribunal would be concerned should you feel that you have to leave their employment for Constructive Dismissal.

I strongly urge you to telephone Diabetes UK's Helpline - who will assist you with the correct wording to use to them. See https://www.diabetes.org.uk/How_we_help/Careline/ for details and the number to ring.

Good luck!

 

[TheClockworkDodo]

Hello, and welcome to the forum. Sorry to hear things are so bad for you at work - I can understand your need for a routine, my partner is the same.

It sounds to me as though in banning you from following your routine your hospital is not making the reasonable adjustments required by the Equality Act 2010 to enable a disabled person to carry out their job. I may be wrong, but I think it would be worth investigating. There is more information about it here https://www.gov.uk/reasonable-adjustments-for-disabled-workers and here https://www.equalityhumanrights.com/en/multipage-guide/employment-workplace-adjustments which might help. Are you a member of a union, or is there an advocate who might help you with this? If not the Citizens Advice Bureau might be able to help - there's a lot more on their website about the Equality Act too - https://www.citizensadvice.org.uk/w...ployer-s-duty-to-make-reasonable-adjustments/

Someone else might have more ideas about managing hypos - I'm afraid I'm not the best person to help with that, I have far more than I'm supposed to!

 

[TheClockworkDodo]

Snap! - I was typing while Jenny was posting. And she is absolutely right about recovering in the car.

 

[Diabeticliberty]

'Concern about your welfare and safety' includes self managing your own condition in a toilet? What planet are they on? Your condition dictates that you use whatever routine best suits you to get you through. Providing you are not attempting to drive your car whilst hypoglycaemic which you clearly are not then I personally do not see their issue. It might be an idea to call their bluff and suggest that if they choose to be so bloody minded about the whole affair but really do have your welfare and safety as their paramount concern then they need to start providing you with facility to manage own condition that does not include somewhere as unhygienic as a toilet. I certainly would not be running my glucose higher than I felt comfortable with in order to pander to the bureaucratic nonsense of an awkward employer. Your own health must come first. I hope that you are able to get them to compromise but if not then I would pursue this as far as is necessary to get an outcome that suits you 🙂

A very warm welcome to the forum by the way. My name is Geoff and I am very pleased to meet you

 

[grovesy]

Sorry I can't offer an help but just to say this does not suprise me, as I worked in the NHS for 40 years. I always thought we were often bad at looking out for our own.
Welcome to the forum.

 

[Copepod]

Welcome to the forum, Diabetic_Aspie. I agree with suggestion to contact Diabetes UK helpline. The key word in employment and disability discrimination law is "reasonable / reasonably". I can understand why, in a small hospital, it's vital to know where all members of staff on duty are at all times. Do you have a pager? Is your car within range? Can you establish a new routine? For example, sitting in a particular chair, while eating sweets from your pocket. I know several health professionals with type 1 diabetes who do that.

 

[Amigo]

Hi Aspie, I agree that this is a disability equality issue and I'd ask for a discussion to sit down and work out a strategy for dealing with your very reasonable adjustments. They're putting themselves very much in breach of the Equality Act but that doesn't help you at the moment with your diabetic control if they're making life difficult for you. Keep records of the treatment in case they're necessary later.
All I can say is good luck and I sincerely hope they treat the patients more responsively than they're treating you at that small hospital! 🙄

 

[Pumper_Sue]

I very much hope SOMEONE could help me with a bit of advice.

I'm a junior doctor with Asperger's; I was diagnosed with T1 in 2011. For years, I have been managing my hypos at work in a certain way: once I feel low, I pop out immediately to my car (parked right outside of the entrance of a small hospital), take sugar and rest in the car for about 30 min. I had this routine worked out, nice and good, and no problems for 3 years. Then, my supervisor alleged that I left work early whilst I was actually in the car with a hypo (after which I returned to the ward and finished all the urgent tasks before leaving 2hrs after my work day officially ended).

Hello Aspie and welcome to the forum.
Firstly going to your car and sitting in it even in a car park whilst hypo could cost you your driving licence in exactly the same way a drink driver would be prosecuted, so even if very hard for you perhaps sit at the nurses desk whilst you treat/recover from your hypo.
Another suggestion is to purchase a CGM and set the alarm to 5mmol so you can then use some jelly beans or what ever treatment you use so that it wards of any impending hypo before it happens.

Must admit to having never had to sit for 30 mins to recover from a hypo I just have a munch and carry on with what I am doing. If you are dropping so low as to need that amount of recovery time then perhaps have a look at the amount of insulin you use or ask for a pump if you haven't already got one.

I'm curious to know as know absolutely nothing about Asperger's, how did you manage your training as a doctor because that would have been very unpredictable and certainly no routine what so every especially in an A&E dept.,
Very well done on your achievement in qualifying as a Dr.

 

[TheClockworkDodo]

A lot of people with Asperger's are very highly qualified, Susan - there's more about it here: http://www.autism.org.uk/asperger

It is different for everyone, but while R can cope with a lot of changes to his routine - in fact the job he has now doesn't have much routine in it and he is fine with this - he finds the unexpected and unpredictable (and the behaviour of other people is often unexpected and unpredictable) stressful. I can imagine him being very distressed by an employer asking him (for no good reason) to change something that works for him and do instead something that wouldn't work for him. And he wouldn't know how best to communicate with them to explain how serious a problem this would be for him.

 

[Copepod]

I'm genuinely puzzled to understand how Diabetic_Aspie copes with patients, patients' relatives / friends, and colleagues, who are often unpredictable and display unexpected behaviour. Not critical, just wanting to understand.

 

[TheClockworkDodo]

@Pumper_Sue - I'm really sorry, just realised I called you Susan. I do apologise, I hate it when anyone gets my name wrong! My brain's really foggy today, thought I was talking to PotterSusan for some reason, despite your very different avatars and sigs 😳

 

[Pumper_Sue]

@Pumper_Sue - I'm really sorry, just realised I called you Susan. I do apologise, I hate it when anyone gets my name wrong! My brain's really foggy today, thought I was talking to PotterSusan for some reason, despite your very different avatars and sigs 😳

No problem I was christened Susan but always been known as Sue 🙂

 

[Diabetic_Aspie]

Thanks a lot, everyone! Really appreciate every member 's comments, advice and welcomes! . And it feels good to finally feel validated and understood!!

I think I will call the Diabetes UK Helpline today, as Jenny and Juliet suggested - and it sounds as if many of others supported that suggestion.

Pumper_Sue, you are raising very valid and interesting points. I will be back later today to clarify some things for myself and to, hopefully, help to resolve some of the confusion about ASD. I'm glad you are interested and want to understand it better.

Cheers!

 

[Diabetic_Aspie]

Ok, here I am again.

Pumper_Sue, I'm very curious how low do you tend to go on hypos? Do you actually have any "proper" hypos, or do you manage to prevent/arrest them before you go in to the <4 territory?

You see, I may or may not feel the warning symptoms at the same levels of BG. It depends how fast the levels are coming down. Sometimes I feel hypo at 5 or 6 mmol/L, if it drops very fast; other times, I didn't feel any hypo symptoms (sweating, shakes, hunger, weakness) apart from being very snappy: when I checked my BG, it was 2.8 . Then there are cases when I feel fine, fine, fine...and go into the full blown hypo with ALL symptoms; my BG at those times can be anywhere from 3.9 to LO. Yeah, off the scale LO.

My Psychiatrist consultant said it might be partially explained by my ASD; autism complicates your ability to perceive internal signals. And that is in addition to the god-awful variability of diabetes itself. So, there you are.

I have been thinking about CGM a lot; do you have any experience with it, Pumper_Sue? It's such a massive investment for us, and I have researched it online but haven't met anyone who has used one so far. I have been pumping on Animas for a few months, and initially it worked great but each time any of my other medications changes, I have to start from scratch. And whilst I am establishing my new ISF, I:C ratio and basal rate (all of which change 3 or 4 times a day!), I go through the hell of daily hypos. Sometimes, I can have 3-4 hypos a day (when it is that bad, I have to take sick leave until things stabilise a bit).

So, yeah... it has been a difficult journey. As a doctor, I worked very, very hard to learn all nuances of DM and management of DM that they teach us at medical school and that you have to learn for our postgraduate exams for Membership of the Royal College.

But when I was diagnosed with DM myself, I discovered I knew squat about it. Whatever we learn as doctors (unless you train to become a consultant diabetologist) and the realities of daily management of diabetes are as similar as learning about childhood development and actually raising a child.

These forums (or, should I say fora?) have been incredibly helpful and a real eyes opener. Thank you, guys!

Anyway, about Asperger's and medicine. First, there are many medical career options that are perfectly suited for Aspies. Histopathologist, microbiologist, virologist, coroner: for any of these, actually, being autistic confers some advantage. Aspie in the lab or in the morgue will not get bored or lonely, will enjoy a slightly monotonous work, and will be delighted to exercise their perfectionism and attention to detail.

Second, even specialties that require some regular interaction with patients can be a good fit for an Aspie: I would like my surgeon to be technically competent and that's it; whether they have great bedside manner and people skills is not important to me (and, having worked in surgery, the same is true for vast majority of people).

Third, you have to be on the lighter end of the autistic spectrum to get through medschool, interviews and postgraduate training. If you are completely unable to maintain some eye contact or lack any social graces, you most likely wouldn't even get in to the medschool. Ditto for being able to adapt to new job every 6 months, or being flexible enough for participating in various duty rotas.

So, doctors on the spectrum can do all these things. It just isn't natural to us. Most people "get it" without any active thought. Autistic people have to actively observe and analyse behaviour of others, work out some kind of a rule book based on that analysis and then apply those rules in daily life. And because these things take active effort, they tend to drain our energy, so we get tired more easily (real bummer when combined with diabetes and the fatigue it brings).

Of course, you would only have both the ability and desire to invest all this time and energy if you are already on the light end of the spectrum: basically, you have to be sufficiently neurotypical already in order to"fake it", and in order to be interested in "faking it" so you could fit in better.

And as doctors we have lots of opportunities for formal training in Communication Skills. That helps a lot, too.

Actually, I was quite shocked when I was diagnosed with Asperger's. I have always been a bit odd: very introverted, conscientious, perfectionist, a bit fidgety and distractible, a bit stubborn (the formal term is "rigid", though my husband calls it "bloody-minded" ), etc etc... but like you I have always thought that being a doctor is incompatible with being autistic. Apparently, it is perfectly compatible - especially if you are a girl (girls are particularly good at imitating social skills).

In fact, I have always been quite popular with and well liked by my patients

I hope that answers your questions, Pumper_Sue. Sorry for the long post; I do tend to get carried away a bit. But if you (or anyone) would like to ask any more questions, I'm happy to answer them.

I think I'll check with the DVLA re the legal view on recovering from a hypo in a stationary vehicle in a car park and with engine switched off.

Oh, and re suggestion to develop a new routine. That is kind of a point of the matter - abnormal adherence to routines and rituals is one of the diagnostic criteria for autism. And changing ANY routine is a lot of effort and very uncomfortable. I am practically at the limit of my adaptability already, with changing jobs, duty rotas, etc. Plus, I can't really think when hypo, so routine takes over automatically.

 

[KookyCat]

Hi Diabetic_Aspie
My goddaughter has Aspergers (which we refer to as the spurge) so I have some understanding of the need for routine. I think it's something that us non-spurge types find difficult to comprehend, because the deep compulsion to continue a routine just isn't there. It's likely that your employer just doesn't quite understand quite how much adapting you've already had to do to work within that environment, and crucially how difficult it is for you when they wouldn't think twice about it. To be fair to them as well, they are legally responsible for your wellbeing during your time at work, so I'm not surprised they are uncomfortable with you going to your car, knowing how health and safety sits in most organisations. It is slightly alarming that a bunch of medical professionals are fairly clueless about Aspergers and diabetes but then they're just humans and most humans are a bit clueless so I suppose it shouldn't be that surprising. I think your best bet would be compromise if you can. What about asking them to list the concerns with your current coping strategy, and then trying to address them whilst keeping your routine. So if they're concerned about your safety and not knowing where you are, can you alert someone before you go? If they are concerned that you might need help could you have a protocol to alert someone etc. Consultation is probably the key here, so if you have to change your routine at least you can work together to build an acceptable strategy that you can then stick to. One of the things Lauren has trouble with is recognising that a non Aspergers brain doesn't see things in quite the same way as hers does, and she's found it really useful to ask us how our brain sees a particular situation so she can better understand what she considers odd reactions to her routines. What I'm really saying is don't expect them to understand why the routine is important to you, just try to understand what is important to them and weave that into your routine. I know it sounds backwards because they're supposed to be adapting the situation for you, we've just found it's easier to make the adaptation suit their needs rather than asking her employer to come up with a solution because inevitably they struggle to identify the bits that are important to her. They have however, adapted extremely well now, and simply say "tell us what you need". Just took a bit of work and some pointers about how Lauren's operating system works. Hope you manage to sort it out 🙂

 

[Amigo]

Ok, here I am again.

Pumper_Sue, I'm very curious how low do you tend to go on hypos? Do you actually have any "proper" hypos, or do you manage to prevent/arrest them before you go in to the <4 territory?

You see, I may or may not feel the warning symptoms at the same levels of BG. It depends how fast the levels are coming down. Sometimes I feel hypo at 5 or 6 mmol/L, if it drops very fast; other times, I didn't feel any hypo symptoms (sweating, shakes, hunger, weakness) apart from being very snappy: when I checked my BG, it was 2.8 . Then there are cases when I feel fine, fine, fine...and go into the full blown hypo with ALL symptoms; my BG at those times can be anywhere from 3.9 to LO. Yeah, off the scale LO.

My Psychiatrist consultant said it might be partially explained by my ASD; autism complicates your ability to perceive internal signals. And that is in addition to the god-awful variability of diabetes itself. So, there you are.

I have been thinking about CGM a lot; do you have any experience with it, Pumper_Sue? It's such a massive investment for us, and I have researched it online but haven't met anyone who has used one so far. I have been pumping on Animas for a few months, and initially it worked great but each time any of my other medications changes, I have to start from scratch. And whilst I am establishing my new ISF, I:C ratio and basal rate (all of which change 3 or 4 times a day!), I go through the hell of daily hypos. Sometimes, I can have 3-4 hypos a day (when it is that bad, I have to take sick leave until things stabilise a bit).

So, yeah... it has been a difficult journey. As a doctor, I worked very, very hard to learn all nuances of DM and management of DM that they teach us at medical school and that you have to learn for our postgraduate exams for Membership of the Royal College.

But when I was diagnosed with DM myself, I discovered I knew squat about it. Whatever we learn as doctors (unless you train to become a consultant diabetologist) and the realities of daily management of diabetes are as similar as learning about childhood development and actually raising a child.

These forums (or, should I say fora?) have been incredibly helpful and a real eyes opener. Thank you, guys!

Anyway, about Asperger's and medicine. First, there are many medical career options that are perfectly suited for Aspies. Histopathologist, microbiologist, virologist, coroner: for any of these, actually, being autistic confers some advantage. Aspie in the lab or in the morgue will not get bored or lonely, will enjoy a slightly monotonous work, and will be delighted to exercise their perfectionism and attention to detail.

Second, even specialties that require some regular interaction with patients can be a good fit for an Aspie: I would like my surgeon to be technically competent and that's it; whether they have great bedside manner and people skills is not important to me (and, having worked in surgery, the same is true for vast majority of people).

Third, you have to be on the lighter end of the autistic spectrum to get through medschool, interviews and postgraduate training. If you are completely unable to maintain some eye contact or lack any social graces, you most likely wouldn't even get in to the medschool. Ditto for being able to adapt to new job every 6 months, or being flexible enough for participating in various duty rotas.

So, doctors on the spectrum can do all these things. It just isn't natural to us. Most people "get it" without any active thought. Autistic people have to actively observe and analyse behaviour of others, work out some kind of a rule book based on that analysis and then apply those rules in daily life. And because these things take active effort, they tend to drain our energy, so we get tired more easily (real bummer when combined with diabetes and the fatigue it brings).

Of course, you would only have both the ability and desire to invest all this time and energy if you are already on the light end of the spectrum: basically, you have to be sufficiently neurotypical already in order to"fake it", and in order to be interested in "faking it" so you could fit in better.

And as doctors we have lots of opportunities for formal training in Communication Skills. That helps a lot, too.

Actually, I was quite shocked when I was diagnosed with Asperger's. I have always been a bit odd: very introverted, conscientious, perfectionist, a bit fidgety and distractible, a bit stubborn (the formal term is "rigid", though my husband calls it "bloody-minded" ), etc etc... but like you I have always thought that being a doctor is incompatible with being autistic. Apparently, it is perfectly compatible - especially if you are a girl (girls are particularly good at imitating social skills).

In fact, I have always been quite popular with and well liked by my patients

I hope that answers your questions, Pumper_Sue. Sorry for the long post; I do tend to get carried away a bit. But if you (or anyone) would like to ask any more questions, I'm happy to answer them.

I think I'll check with the DVLA re the legal view on recovering from a hypo in a stationary vehicle in a car park and with engine switched off.

Oh, and re suggestion to develop a new routine. That is kind of a point of the matter - abnormal adherence to routines and rituals is one of the diagnostic criteria for autism. And changing ANY routine is a lot of effort and very uncomfortable. I am practically at the limit of my adaptability already, with changing jobs, duty rotas, etc. Plus, I can't really think when hypo, so routine takes over automatically.

I found your explanation fascinating Aspie and incredibly considered and well formed. My son is classically autistic so his communication skills don't allow him to describe the unique way in which he perceives the world. You're absolutely right that social skills and nuances can be taught in an attempt to mimic 'accurate empathy'. I spent years teaching my son appropriate emotional responses using art therapy. As a result he hasn't slipped rigidly into the need for absolute routine without change (though he's predisposed towards it). I always find people with Aspergers are more semantic/pedantic than classically autistic people interestingly enough. Probably because they are able to communicate their unique responses more clearly.

Many very focussed, driven people are on the autistic spectrum and I can see how it could be very useful in many branches of medicine. Perhaps less so as a GP dependent on the extent of the social interaction impairment. (However, it's clear Doc Marten on the programme is meant to be on the autistic spectrum!) I admire what you've had to do and overcome to achieve your goals. I'm only sorry you're not working with people with the same level of understanding of ASD and diabetes. I hope you can find a mutually agreeable solution to keep you safe and them happy.

Best wishes, Amigo

 

[Abi]

I think I'll check with the DVLA re the legal view on recovering from a hypo in a stationary vehicle in a car park and with engine switched off

I'd be tempted to leave the DVLA out of it-if car for recovary is still the only option then recheck the regulations and advice re what to do if you have a hypo at the wheel. I suspect leaving the keys out of the ignition and sitting in the passenger seat would be the better option

 

[trophywench]

Thank you for that Aspie - insights that I certainly didn't have, except knowing some of the facts and seeing the occasional documentary etc.

 

[TheClockworkDodo]

Autistic people have to actively observe and analyse behaviour of others, work out some kind of a rule book based on that analysis and then apply those rules in daily life. And because these things take active effort, they tend to drain our energy, so we get tired more easily (real bummer when combined with diabetes and the fatigue it brings).

Of course, you would only have both the ability and desire to invest all this time and energy if you are already on the light end of the spectrum: basically, you have to be sufficiently neurotypical already in order to"fake it", and in order to be interested in "faking it" so you could fit in better.

This sounds so familiar, Aspie - it is exactly what my partner does. He is always thinking "what would a 'normal' person say in this situation?" He is very successful at faking it - he gets on well with people, and is really good at conversation, and I think most people wouldn't have a clue how much of an effort this is for him. He is always tired - and it doesn't help that he doesn't sleep well either, another autistic thing (he can't cope with anything like light or noise when he's trying to sleep).

He has never had a formal diagnosis of Asperger's, but we have done enough research to be pretty sure that is what he has. If you don't mind my asking, did it help you to get a diagnosis? We have been wondering whether asking our GP for a referral to try to get him a diagnosis would be a good idea - he is so high-functioning that we have never felt it necessary before, but the constant tiredness is really difficult for him at the moment.