Non-ASD-specialist NHS staff training

[Mumble]

Could anyone tell me how much (if any) training, and of what sort, NHS staff (all - receptionists, paramedics, nurses, doctors etc...) have in autism/Asperger's when that is not their area of specialism and they are involved in more 'medical' aspects? I suspect about as much as teachers, right?

 

I have come up against such a variety recently, it seems to be pot luck, from those who are knowledgeable, those who don't know but ask and genuinely want to help/know/do the right thing, through to those who think they know and those who are totally dismissive. The different reactions I get do have an impact beyond the AS because where they have a very negative reaction it increases my stress levels which becomes self-perpetuating in me having more 'autistic behaviours' (if that makes sense).

 

I have to say the majority have been very very good and I've been really impressed, but the few I've come across who have been appalling ("You can't have AS, you're talking", "Stop being silly and look me in the eyes now", "Don't be clever with me" (I was asked what had brought me to hospital - I took it totally literally and said 'an ambulance' rather than why I was there as I found out they had wanted me to say)) have done a great deal of damage to how I cope overall. Is this usual? Is it worth me trying to educate these people? Is there anything I can do that others have found works (I have a letter from my GP explaining the issues which is usually fine - except when others refuse to read it...)? All I need is something simple that they will accept so they know I have AS and how it may impact me. Any ideas greatly received.

[fiorelli]

Non-ASD-specialist NHS staff will not get any specific ASD training unless it is directly related to their work, or they have elected to go on a course related to it. For the simple reason, if they do it for one thing, they have to do it for them all, and that simply isn't possible.

 

However, NHS staff should be expected to treat each person with respect and take into account the individual circumstance where possible. But you must remember that these people are only human, and are trying to do a job, and sometimes, their own prejudices do leak into their work - even though they shouldn't - when this happens, it should be brought to their line-manager's attention so as steps can be taken to re-educate the person involved.

 

As for something to show people in these situations, how about the NAS card that carries a brief discription of ASD?

[Mumble]

Non-ASD-specialist NHS staff will not get any specific ASD training unless it is directly related to their work, or they have elected to go on a course related to it. For the simple reason, if they do it for one thing, they have to do it for them all, and that simply isn't possible.

Yep, that's what I thought and it seems reasonable. Makes you think about the way teachers are criticised for 'not knowing' though, doesn't it?

 

As for something to show people in these situations, how about the NAS card that carries a brief discription of ASD?

I do have - it's when they refuse to read it because 'they know' that I have a problem. But I should stress that this is a tiny tiny minority of staff causing me the majority of my stress... Maybe I'm better off trying to think, oh well, you (as in them) have the problem, not me and just being thankful for all the staff who do 'get it'.

[Canopus]

The simple answer to this question is that by and large non-ASD-specialist NHS staff have minimal knowledge of AS/ASD. This is because they aren't trained in these subject areas yet.

 

I have been involved in a project in conjunction with a university to produce some video training material for non-ASD-specialist NHS staff. However, the interest in training NHS staff about AS/ASD isn't high on the agenda of most managers compared to other training that IMO is far less important.

[bid]

The thing is, with the best will in the world, autism is only one of hundreds of 'hidden' conditions/disabilities.

 

So why should it be singled out for specific training? Why not epilepsy, diabetes, schizophrenia, etc, etc?

 

Bid

[Kathryn]

The thing is, with the best will in the world, autism is only one of hundreds of 'hidden' conditions/disabilities.

 

So why should it be singled out for specific training? Why not epilepsy, diabetes, schizophrenia, etc, etc?

 

...or someone not speaking English as a first language, for whom the question "what brought you to hospital?" might be equally incomprehensible - and produce the same response!

 

K x

[Mumble]

The thing is, with the best will in the world, autism is only one of hundreds of 'hidden' conditions/disabilities.

 

So why should it be singled out for specific training? Why not epilepsy, diabetes, schizophrenia, etc, etc?

I agree that it shouldn't be singled out - I was just wondering if there was any training or not so I know if I come across such a situation in future what sort of level to pitch my trying to explain at. Hopefully medical doctors do know about epilepsy and diabetes though

 

On 'what brought you to hospital?' - can someone tell me what in that indicates how it should be answered and if it might be worded differently so I don't get caught out again? - I hate it when I make such stupid mistakes and I'd like to learn from them so I get it 'right' in future.

[billabong]

It seems to me that people - especially medics, I hope - have an idea of what the other 'conditions' involve but are more likely to either be unaware of or have misconceptions about ASD. We have occasional talks for the public and NHS staff where I work (NHS) and I've suggested ASD as a topic; that would involve no cost (with volunteer speakers) and, hopefully, would increase awareness (if they go ahead with it!).

[Kathryn]

On 'what brought you to hospital?' - can someone tell me what in that indicates how it should be answered and if it might be worded differently so I don't get caught out again? - I hate it when I make such stupid mistakes and I'd like to learn from them so I get it 'right' in future.

 

What brings/brought you here? is a common conversational way of asking "what is the reason you've come here?" In fact it's the more usual present tense "what brings" which would indicate to me that a non - literal response was needed.

 

K x

[Mumble]

What brings/brought you here? is a common conversational way of asking "what is the reason you've come here?" In fact it's the more usual present tense "what brings" which would indicate to me that a non - literal response was needed.

Now that's interesting - because 'what brings' I would have got 'right' (and have done in the past) - so perhaps it was the tense that threw me as it became a completely different question (in my mind ) - lesson from today, stop, think, go through all the tenses the question could by asked in ... and then answer

[Karen A]

Hi.I worked as a staff nurse and community nurse in the NHS for 11 years and never had any training in ASD that I can think of.That was 12 years ago though so things might have changed.ASD would be classed as a learning disability rather than a medical condition and so would not be covered as part of RGN training.I think perhaps it may be covered in the training for psychiatric nurses.It used to I think probably be an area for Learning Disability Nurses but the job no longer exists.Karen.

[lynne]

NHS are like alot of the general public, what they know comes from films and documenties such as rain man

[pearl]

Trouble is, cos its hidden, peeps will use language in the way they normally do, without a thought.

When I'm speaking to Chinese students for instance, I deliberately use plain, simple language so they can (hopefully) understand me. But thats because I can see they are Chinese! I argued long & loud about what our "restricted loan" collection should be called. (Apparently "restricted loan" sounds negative ) So it has been called "key resources" which will make absolutely no sense to international students, & I guess, to many autistic students too. So, if a student said to me, where's the key then? I too might think they were being "clever", as many of them do indeed revel in being smart*rses

 

With the ambulance comment, (or similar stuff), I guess if you say something like, sorry I wasnt joking, I'm autistic and take things literally, should cover most eventualities, then as you say, if they dont accept that then its their prob not yours. But I'm also guessing that feeling ill in hospital isnt the best time to start explaining stuff <'>

[Canopus]

NHS are like alot of the general public, what they know comes from films and documenties such as rain man.

 

I don't really think such a broad sweeping statement is justified in this instance. I have been informed through semi-reliable sources that a considerable amount of knowledge of AS in the NHS is in the brains of people who are not in a position to use it with patients. Examples of this are a secretary happens to have a kid with AS or a pharmacy technician is involved with an AS support group.

[Mumble]

Examples of this are a secretary happens to have a kid with AS or a pharmacy technician is involved with an AS support group.

Isn't that just 'life' though - all sorts of people know all sorts of odd stuff that might be useful in various situations that probably can't be predicted (it's why we shout at the 'really easy' questions on quiz shows etc. ).

 

Apparently "restricted loan" sounds negative

It's not the words I worry about - it's the gaggle of semi-witch like librarians who encircle the books to prevent the evil students getting their sticky paws on the precious resources who scare me ...

 

I guess if you say something like, sorry I wasnt joking, I'm autistic and take things literally, should cover most eventualities, then as you say, if they dont accept that then its their prob not yours.

Yep - I just need to convince myself of that I really let it get to me when I mess up and others react really badly rather than allowing it to be a learning experience for both sides and moving on.

[Karen A]

I don't really think such a broad sweeping statement is justified in this instance. I have been informed through semi-reliable sources that a considerable amount of knowledge of AS in the NHS is in the brains of people who are not in a position to use it with patients. Examples of this are a secretary happens to have a kid with AS or a pharmacy technician is involved with an AS support group.

 

As is the case in education,leasure,business,hospitality industry,sport or any other walk of life.People who know others well personally with any disability are bound to be more aware....well with the exception of those who are in denial. Karen.

[dogfish]

I am currently involved in nurse education and have just finished working for the NHS. I went through nurse training a few years ago. And for me, the answer to your question is none. Though it ought to be included in general problem based learning scenarios so that there is an awareness from the outset.

[Mumble]

Feeling much better about this today - saw a consultant who did have some preconceptions but who actually listened to me and changed his understanding based on me rather than on what he thought AS might mean - best outcome possible and my faith in the NHS restored

[Ian Jordan]

Optician training in special needs of any type - nil. Even blindness only gets cursery attention.

 

When I brought it up with my professional body, they do not believe that there is any problem whatsoever. I suspect that this is the case in virtually all professions and that whilst the profesional bodies have this attitude, nothing will change. Yet so much can be done, and it is heartbraking to think of the enormous numbers of people that suffer unnecessarily. Most professionals do not realise that there is any problem - genuinely!

Perhaps it is only when litigation forces change that the professions will modify their position.

[joybed]

I started my nurse trining 16 years ago and had no training in autism at all never even heard it mentioned whilst working in paediatrics. I currently work as a midwife and again no training given. Most of my colleagues don,t have a clue and some are quite thoughtless when asking about My sons autism. I hear comments all the time such as this womans got special needs followed by a knowing smile and you know normal for this area. I don,t think they are being unkind just using bad humour to get through a stressful day. Some of my colleagues are great and understand why i am so stressed at times but others slag me off behind my back saying i can,t cope and I have even had it said to me that it must be nice to be able to pick and choose my shifts using my son as an excuse, (I have special working hours and a term time contract). It frustrates me that these people are supposed to be in a caring profession and can,t even care for their own staff. I dont want pity just understanding that sometimes life is hard. Probably gone a bit off topic there but thought it might be relevant.

[billabong]

Feeling much better about this today - saw a consultant who did have some preconceptions but who actually listened to me and changed his understanding based on me rather than on what he thought AS might mean - best outcome possible and my faith in the NHS restored

 

Good news! I'm really glad you met an open-minded consultant.

[peaches]

Just discovered this post and decided to add to it.

 

I am really ashamed to admit that I have a psychology degree and I am a qualified early years teacher. I didn't know my daughter had Asperger's until she was 22. I knew she was different, but other professionals had dismissed my worries. I knew about Kanner's definition of an Autistic child, I had read Uta Frith's book on autism, but it never occurred to me that it applied to my daughter. The problem was, she wasnt the typical autistic child described in the text books. That may be a problem with the medical professionals that have actually heard of ASD. You are given a broad definition, you might actually just meet one child with autism in the course of your work, but that might not help you. The child will have the same broad traits, but they may be expressed in different ways.

 

I am so embarrassed that I never tell the psych at CAMHs or the Ed Psych or the Senco about my background!

[chris54]

Hi Peaches

Don't feel to bad, I worked in child care and did training about autism and even looked after an autistic boy but still didnt see it in my son who now has a diagnosis of HFA/AS.

[Kathryn]

Just discovered this post and decided to add to it.

 

I am really ashamed to admit that I have a psychology degree and I am a qualified early years teacher. I didn't know my daughter had Asperger's until she was 22. I knew she was different, but other professionals had dismissed my worries. I knew about Kanner's definition of an Autistic child, I had read Uta Frith's book on autism, but it never occurred to me that it applied to my daughter. The problem was, she wasnt the typical autistic child described in the text books. That may be a problem with the medical professionals that have actually heard of ASD. You are given a broad definition, you might actually just meet one child with autism in the course of your work, but that might not help you. The child will have the same broad traits, but they may be expressed in different ways.

 

I am so embarrassed that I never tell the psych at CAMHs or the Ed Psych or the Senco about my background!

 

Peaches, you aren't alone, - my other half is a psychologist and I have an MA which includes the study of language and communication disorders - yet we still took 12 years to realise that there was something strange about our daughter. She wasn't "typical" either - so unlike the only other child I ever knew with AS - a three year old boy who behaved completely differently. Funny old world, eh?!

 

K x

[LicklePaulie]

I should point out that there are avenues through which health professionals can learn about AS but, as has been suggested above, they are often limited to Continual Professional Development courses. E.g. I have presented in the last month to two training days for the Royal College of Psychiatrists and to a Clinical Governance Forum in our local area involving all arms of the Community Mental Health Teams (who hold the responsibilities of dealing with those of us who have AS). On each occasion, the theme of the day was Aspergers Syndrome in Adults. The lack of knowledge and expertise among the general medical and welfare professions is appallingly low but some of us are trying very hard to change this. Just my two pennies worth...

[Karen A]

I should point out that there are avenues through which health professionals can learn about AS but, as has been suggested above, they are often limited to Continual Professional Development courses. E.g. I have presented in the last month to two training days for the Royal College of Psychiatrists and to a Clinical Governance Forum in our local area involving all arms of the Community Mental Health Teams (who hold the responsibilities of dealing with those of us who have AS). On each occasion, the theme of the day was Aspergers Syndrome in Adults. The lack of knowledge and expertise among the general medical and welfare professions is appallingly low but some of us are trying very hard to change this. Just my two pennies worth...

 

I will add my two pennies woth two.Karen.