What information do professionals have?

Longman, I've been re-reading your original post and I wonder whether the problem is that autism has only been recognized as a condition for such a short while - and for most of that time it was believed that only children were affected by it.  As a result many 'professionals' remain in the mindset that it's a childhood condition and contact with adults puzzles and confuses them, since many (most) of the adults asking for a diagnosis have learned to cope with life in the NT world and don't - on the surface - appear any different. 

My own experience was that my GP initially refused to believe that I might be on the spectrum and seemed to find it impossible to accept that while one can cope/fake doing so all the time can be extrmely stressful and results in various mental and physical problems.  Children, of course, don't do this.

A poster on another board wrote about his yearly assessment interview with his manager, who said that while his cheerful and helpful attitude was appreciated by his colleagues there were times when he showed quite a different side of himself.  However, these colleagues realised that this wasn't the "real" him and made allowances.  The poster said he wondered what the reaction would have been if he'd said that the "different" side of him was the 'real' him and the apparently 'normal' behaviour was a skillful veneer he applied in order to succeed at his job.  

With respect to autism, a local authority professional told us "the statutory guidance [as a result of the Autism Act] brought up the agenda of autism explicitly.  The fact it's statutory guidance gives it relevance. for the organisation to pay attention.  The guidance started the process of change for people with autism across the borough".

Yes but if they don't even accept that it's statutory how do you change that?

My local adults diagnostic centre manager said to my advocate on the phone regarding NHS NICE Guidelines "They're only guidelines we don't have to follow them".  Those guidelines are backed up by this statutory guidance.

CAMHS claimed that my eldest child's ASC assessment followed NHS NICE Guidelines but they contravened loads of the guidelines both in how they did her assessment and how they formed their opinion on her diagnostic status!  Needless to say they failed to diagnose her and I am now pushing for a 2nd opinion - which will cost the NHS more money!

They are failing to diagnose people that should be diagnosed and those people will then be prevented from getting services and support anyway!

They need to get the assessment and diagnosis right first!

OK, in the vain hope that some professional somewhere might read this.

How My Sensory Issues affect me as an adult with Asperger's - by IntenseWorld

Equilibrioception (vestibular/balance): I am very clumsy and regularly bump and bang myself, and have really bad vertigo with heights and being close to edges of things.  Anything moving too much makes me feel sick, that could be in any form of transport.  I walk into things a lot.  I never could learn how to ride a bike.

Proprioception (awareness of body in space): This overlaps with the vestibular issues, as I cannot judge well the distance I am from things and it combines to make me really clumsy.  It makes me constantly burn myself on ovens and irons and walk into door frames etc.

Auditory: hypersensitivity to sounds.  I can hear our sonic insect repellants, I hear things no-one else seems to hear.  I am stressed by the sounds of our neighbours talking, coughing, sneezing and general movements through the walls.  If they are in their gardens it's so stressful for me I have to stay on the other side of the house.  Certain pitches of noise are worse than others, squeals of children are very difficult for me (and having two of them you can imagine how that is) and I usually wear earplugs even in the house.  Small noises make me jump or flinch and wake me up very easily and I can't get to sleep if there are small noises at the time.   Hearing my husband (or anyone) crunching food sends me insane, I get angry and send him out of the room.

Visual hypersensitivity: Bright colours, especially neons/fluorescents literally make my eyeballs hurt and if they are bright enough I cannot look at them.  I wear sunglasses even on overcast days and drive with the sunvisor down as the sky is too bright, even when it's cloudy or not sunny.  I have scotopic sensitivity and avoid driving in the dark as the glare from streetlamps gives me night-blindness and driving like that is scary.  Reading text on white is uncomfortable and my eyes literally feel soothed with a coloured background.  I also get eye migraines, I don't know if this is related to visual stress.

Exteroception (tactile sensitivity): I feel every tiny little thing on my skin.  I will feel the tiniest fly land on me or a dropped single hair on my arm and it makes clothing feel itchy, scratchy or as if it presses.   I can't bear even one tendril of hair brushing against my face.  I therefore probably have a lower pain threshold than normal.

Interoception (awareness of internal organs): I feel internal bodily sensations extremely.  When I was carrying my children I felt them moving in the womb much earlier than normal and the radiographer doing my scans didn't believe me.  I have felt things "go wrong" inside that when I went for medical investigation things were found.

Olfactory: I dry heave violently at unpleasant smells and can smell things long before others can and when others can't at all.

Food textures: I can't bear stringy food, slimy food, gloopy food, food with little bits in (I can gag extremely easily over textures) and am frequently seen pulling bits and pieces out of my mouth when eating.  If I see a tubey vein in a piece of meat, well that's it for me.

As you can imagine, all this combines to make just being in the world (as a modern society, with colours and busyness all around very stressful.  It's an existential stress that is added to by anxiety, information processing issues (I need to see things visually and verbal information is problematic) and executive dysfunction.

I didn't know prosopagnosia was classed as a sensory issue, but I have a bit of that too.  If I see someone out of context I can struggle to know who they are.  I have had people say "Oh hello" to me in the street before as if they know me quite well and I have not had a clue who they are.  So I have bumbled along saying "how are you" hoping they don't notice.  I have terrible trouble with peoples' names, even a few minutes after being told them if there are more than 2-3 people at once.

Ask me any question you would like, about either my sensory problems or any other aspect of my Asperger's.

Hi both, 

Here's a response from Shane from our campaigns team that I hope will answer your questions.

Hi Longman - just to clarify a few points before I discuss PfA. I'm still waiting to hear back from a few individuals on the diagnosis information in the booklets. 

AskAutism is to educate professionals, the email address I provided was so you could speak to them directly about the questions you had about the programme. You asked for more information on who they surveyed, and they're happy to respond to you directly. 

The "off topic" comment was about my response to Openheart about campaigns etc, as it's not to do with what professionals know about autism. 

Anil-A Mod, you were going to find out for me about the definition of autism based on the Triad of Impairments in the Push for Action leaflet - 27th August.

The Push for Action Campaign keeps messaging people to act on it, but trouble is if you already have you cannot do it again, and many people must be confused whether the publicity they get is a new stage, or still the original.

You say the Government is carrying out its own investigation but what part of that is a recent development?

We are supposed to be able to pursue matters with the Minister through the email address autism@dh.gsi.gov.uk according to Push for Action publicity. I tried this (copied to my MP) but didn't even get an acknowledgement. Is this email option still open?

I thought you said AskAutism was to educate professionals rather than answer our questions, I'm now confused.

And why is a thread about what professionals know about autism slightly off topic to what IntenseWorld asked?

The NAS campaign seems to have lost momentum, possibly because it needs to distinguish things more clearly.

@Anil A: how can the government tackle the attitudes of the staff in the NHS and other public organisations?  There is a culture of passing the buck, lack of culpability, drone-like inaction and lack of awareness of their responsibilities (and no desire to increase awareness) at every level.

Even the commissioning managers of both adult and children's services in my area have this attitude.  They do not bring to task their own failing services or enforce corrective action.

The government can't change how people think, and they will always find ways round doing what they are supposed to do, by:

• failing to diagnose some people who should be diagnosed to keep the demand on services as low as possible;
• citing lack of funding and resources;
• passing responsibility round and round the mulberry bush so no-one actually takes action;
• spend time having consultations and meetings and producing reports to make it look like they are addressing issues, when in reality all they are doing is discussing them and making recommendations that never see the light of day.

And if the government doesn't ensure there is the available funding for what is needed, what's the point of them pushing local authorities to do anything?

Hi Longman,

I've passed on this thread to a few teams internally. In the meanwhile if you have questions about Ask Autism, they have an email address you can use - askautism@nas.org.uk

Hope that helps,
Anil 

Hi openheart,

 Our campaigns team have seen your comments and have responded with this. I hope it helps. Admittedly it's taking this thread slightly off topic, so if need be we'll create a new thread.

Trouble is you have to prove that some law or governance has been breached.

Everything is hedged round with conditions and lots of things are necessarily vague.

It intrigues me that if I appear to have dropped some litter in the street I am likely to get an on-the-spot fine, and would have real difficulty trying to prove it wasn't me.

If a government or local authority or health authority official lets down a disabled person, a law team will come out of nowhere and you'll have a really hard time proving anything.

An example is archaeology (one of the least regulated of professions). There is actually very little set down about what an archaeologist is obliged to do in law, there's a few very woolly guidelines. If an archaeologist fakes the evidence for an excavation there is virtually nothing anyone can do about it. Because bizarrely there's nothing set down that says he cannot.

There's a difference between what you think the Autism Act says, and what you can actually expect from it. At the last review of progress, local authorities that had done nothing were applauded because there were pprovisions of one sort or another before the Act that sort of did the right thing.

You might be the bearer of a bank note that says it entitles you to the equivalent in money.  But being the bearer of autism in the light of the Autism Act gets you precisely nowhere.

Its a bit like the argument that those who take the highest responsibilities in the land should be paid commensurately. So if they mess up you might suppose that correspondingly they ought to get sacked. Mostly it is too expensive to sack them because they have a contract that says they must be paid compensation (often in the £millions) if they have to be sacked, whatever the reason.

You can be sacked for just not fitting in because of your autism and an employment tribunal that will cost you a fortune may well not work in your favour.

I was thinking, as you do,,

POLICY MAKING INTO LAW(act of parliament)~ Interest rings via canvas.... individual/public/special/inner/letters of interest/government equals policy and act of parliament,, and here is the interesting bit... this creates at the end of the day A DEMAND OF DEBT to be paid by society via government promise to pay the demand of the bearer, in this case the Autism Act.  

I am the bearer(off autism) and I demand !

Demand is automatic debt,, when an act of parliament bill is policy it demands a debt of the government by promise of debt to pay,, hence in the Autism Act, there is a debt demand or a cost to society which is promised to be paid or the government is open to risk of legal challenge at the courts for compensation.

I keep saying this,, WILL THE NAS TAKE AUTISM ACT FAILURE TEST CASES TO COURT, although the organisation is in the ring system and with the main ring of governement, for the good of government it should be challenging the government under the demand of debt via the Autism Act. Why have the act in the first place if the debt of the demand(autism service and protection) is not made policy on the ground ?

I feel that I am speaking double dutch ? Does this make sense ?

Some years back I invested in a number of the more academic reference books I thought would help me understand things better. One of these was Olga Bogdashina "Sensory Perceptual Issues in Autism and Asperger Syndrome - Different Sensory Experiences, Different Perceptual Worlds" (Jessica Kingsley Publ 2003.)

Firs of all it didn't help much and just fills more bookshelf space. That's not in itself a criticism as many academic texts have a specialist audience and can be daunting to the lay reader. But I had hoped it would give me some answers.

Chapter 3 lists "Possible Sensory Experiences in Autism". It covers:

Literal perception; Hypersensitivity and/or Hyposensitivity; Inconsistency of perception (fluctuation); Fragmented perception (perception 'in bits', stimulus overselectivity); distorted perception; sensory agnosia (difficulty interpreting a sense), delayed perception (delayed processing); vulnerability to sensory overload.

Of these the only bits dealing with "sensory overload" and the hyper/hypo and vulnerability to sensory overload sections. The former is a paragraph or so on each of hypervision, hypertaste/hypersmell, hypertactility, vestibular hypersensitivity and proprioceptive hypersensitivity. Most of this was from Temple Grandin's writings over 3.5 pages, then a table and 4.5 pages of examples, such as Marc Fleisher's impending falling ruler. Its not bad stuff, just not ground breakling understanding of what happens - I've read the same stuff in many other books. The professional is drawing on fairly old examples.

Vulnerability to sensory overload is just three pages, mostly from Donna Williams 1996. I don't disagree with the content, just I hoped for more understanding.

There's a chapter on cognitive styles - whether you are visual or numbers orientated, then a chapter on other sensory issues such as synaesthesia, prosopagnosia, central auditory processing disorder, scotopic sensory syndrome, sensory integration/dysfunction disorder.

This is the sort of book a professional will pull of the shelf looking for answers.

But it wont help the professional understand why housing that is thin walled and close together, which is the kind of social housing that people on the spectrum have to take, is uncomfortable. Or why many work places are difficult.

It's not about understanding people's everyday needs. There is an acute lack of literature on what sensory overload actually means.

Thanks Anil A Mod

Thanks also IntenseWorld.  Your problem with housing is sensory. But sensory just doesn't appear in the Triad. The "Push for Action" booklet sticks sensory on as a "by the way" after giving prime position to the Triad. But I think many health professionals do not get the message about sensory, being told the Triad more or less covers everything.

How do the professionals build up a picture from speaking to adults?  With confidentiality issues I don't know how or where this could be collated, and highly specialised academic papers are more likely looking at a few case studies of very specific issues.

You only have to look at recent, otherwise more academic, textbooks to find most of the examples are the same anecdotes that have done the rounds for thirty years. And do we know these are typical? What new examples are being generated, where from and to what effect?

More importantly WHO are professionals assessing? I think it is mostly people with marked disabling autistic spectrum conditions, or people with secondary issues such as depression and mental health problems, where it may be hard to distinguish routine day to day from key issues that can be read against the triad.

Are the professionals seeing milder or abler people and understanding their day to day needs?

Hi Longman - I've asked our information team for clarification on the points you've raised and I've passed on your concern about our Push for Action booklets. 

I think the Triad of Impairments model is helpful to understand the areas of difficulty.  As you say Longman, it doesn't tell the real life stories or difficulties adults with ASCs have.  I think professionals would build up that picture from speaking to such adults during assessments and therapies.  It would be an individual thing with each person's environment and situations as to how the condition affected them, also, we all have our own unique blend of the traits, so one person may have worse empathy than another for example.

Professionals aren't interested in the nitty-gritty of what we go through, all they care about is fitting things into boxes and anything they offer (or don't offer) is based around that.

I think it comforts them to place anything we say, into one of the triad and follow a train of thought that way, as to how to deal with it.  If they didn't do that they would probably be floundering.  All their training and experience is based on applying the individual's problems to a known model.

I once had a counsellor tell me she was out of her depth with me and didn't know how to help me.  That was long before I had a diagnosis or had even heard of Asperger's.

Until they ask us what will help us, they will never get it right.  Of course, there are things we need that they cannot change.  You cannot change society, or the fact that we are in a minority.

One of the biggest things I think that needs to be changed is the type of housing that we need.  I cannot bear living in housing that is so close to others, with all the noise and disturbance that brings.  But as space in the UK is at a premium and they want to cram in as many houses as they can into each space I can't see that ever changing.  Plus with immigrants swelling the population that puts even more pressure on housing stock.

I agree that it is important that the right information is sent out to authorities and frontline workers and people in key positions, but there is still this deliberate avoidance of asking us what we need.  Authorities could survey autistic people to ask us, but they don't.  Because asking us would involve money being spent.  Or they sometimes do ask us, but then do nothing with that information.  They just want to make it look like they are doing stuff in response to the Autism Act.  Fast forward a few years and you will find the reports but the status quo remains.

I just happened to read through the "Push for Action" booklet I was given at a NAS meeting with our MP.

Page 4 headed Background: About Autism.  It explains autism under the Triad of Impairments headings: Social Interaction (red panel) Social Communication (grey panel) and Social Imagination (purple Panel).

Below this, normal print, without highlights it merely says "In addition, people with autism may experience over- or under-sensitivity to sounds, tastes and smells, lights or colours"

My concern, in raising this thread, was that some training packages for health professionals, relied too much on the Triad of Impairments.

Here we have NAS telling everyone the Triad of Impairments explains autism, oh and by the way sensory issues may be a feature as well.

They haven't even progressed as far as the Working Group advising the NICE guidelines which changed category 3 "Social Imagination" into Repetitive and focus issues, because "lack of imagination" is confusing to many.

WHAT IS THE POINT OF TRYING if NAS is giving out wrong messages like this? The booklet has been sent to MPs, local authorities, all kinds of decision makers. This Background statement is on the page facing a foreword by the Rt Hon Cheryl Gillan MP.

I just feel totally let down. What's the point of trying.......?

Thanks for your insights openheart. I agree with you it looks that way. I just reckon it comes about through normal (mostly NT) behaviours rather than conspiracy theory.

Yes its about players and most people ending up as chips in these bigger games. But you are, I feel too fatalistic. There are ways around it - slow I grant you - but more importantly we need to have hope and with those absolutes you describe why am I even trying?

My concern with the NAS, as I've already said, they have to be sure they are being taken seriously. All these initiatives are good. But if organisations like the Royal Society of Psychiatrists, and particularly those who stand to gain financially from preserving the status quo, choose to ignore NAS, or sideline NAS, or advise their members/followers not to listen to NAS....then nothing is achieved.

Thanks also IntenseWorld.  I've survived by having narrow intense specialisms. This means I've always had to move across disciplines, often putting me "on the wrong foot" (if the metaphor is OK) with people who see me as an interloper. I've also developed a knack for synthesising and acquiring new knowledge fast. That can really impact on academic cliques if you suddenly outrun them. Believe me I've had my share of storming and hate mail because I've crossed boundaries and "stepped on toes" (good metaphor I think).

But it has to be done for science to evolve. Academic cells do get incredibly isolated and superior, but I think its down to NT phenomena - group identity, survival as a pack etc. Also having come in to academia late, from industry R&D, I was horrified by the thoroughly odious, toady, bitchy unhelpful world I found myself in and it took years to cope - being both vulnerable (AS wise) but somehow smarter since I survived (AS attributes too).

What I've been saying in these postings is intentionally provocative. I do hope the Royal Society of Psychiatrists gets to hear. They won't like me for it. But I really don't care. Their profession should be more accountable, even if they don't want it, and to progress on helping adults with autism the Royal Society of Psychiatrists and other such organisations need to bend.

Thanks Anil A - Mod for these insights.

I will follow up on DISCO, if it is different from what I've read so far, but please could NAS take up the two key things I've highlighted in my previous repetive rantings....sorry - a nod to a point made by IntenseWorld - I mean postings of course:

1. Do professionals understand about eye contact changes in adults?

2. Do professionals take account of sensory processing (or Digby Tantam's bandwidth theories), and sensory overload as having a considerable contribution to what the triad of impairments describes?

With regard to (2) the sensory aspect of social communication is probably causal - having difficulties processing information prevents normal learning and adjustment. I don't think enough has been done on this.

With regard to the NAS initiative "Ask Autism" what cross-section of adults on the spectrum have been consulted. One of my fears is that those who are abler, while less impacted by autism, are possibly able to explain and analyse better, but are often left out because their As isn't considered relevant.

I'll try to follow up on this.

Thanks again for listening and responding.

JUST the money tree talking, the gate keeper of knowledge, certificate or do not pass go printers, the hub point. A business , good if you can get it.

it is a double dip, millions of funding from the taxpayers and a private income.

Stop selling Autism !

THE NAS SHOULD BE IMPARTIAL AND PROVIDE SUPPORT FOR PEOPLE WITH AUTISM, NOT THE PARENTS, NOT PROFESSIONALS, NOT THE WIDER SOCIETY.

I WANT AN NATIONAL AUTISM ORGANISATION, WHICH HELPS ME, A SUFFERER WITH AUTISM GET DIRECT ASSISTANCE, NOT A TALKING SHOP WHICH MAKES COIN OUT OF AUTISM !

THE NAS, JUST DON'T GET IT ! THE NAS SHOULD BE A CORE CENTRED ORGANISATION AROUND ADULTS/CHILDREN WITH AUTISM, BUT IT IS RUN LIKE A DEPARTMENT OF AUTISM, WITH ADULTS WITH AUTISM ON THE EDGE, IGNORED AND LABELLED AS THERE PATIENTS.

NO ONE WORKING FOR THE NAS SHOULD BE NT AS AUTISTIC PEOPLE ARE NOT DUMB. THE AUTISTIC COMMUNITY SHOULD BE SELF-REGULATING BY AUTISTIC PEOPLE.

Hi Longman,

In response to the request for information earlier, our information team responded with the points below. 

Diagnosis in adults

Psychologists and psychiatrists vary in the diagnostic tools that they use for diagnosing autism or Asperger syndrome, both in the case of children and adults. The diagnostic method devised by Dr Lorna Wing and Dr Judith Gould, the DISCO, is one that is suitable for use with adults  as well as children. This is because it takes a comprehensive look at the person's history, communication patterns, experiences of sensory stimuli, education, employment, friendships and relationships,  and all the factors including mental health difficulties/ misdiagnoses that may have arisen on the person's path through life to date.  The NAS Lorna Wing Centre trains clinicians in the DISCO method. The method is thorough. It involves interview of the  person concerned and a family member who can provide a description of the person's early development and observation. 

Training available to professionals of other disciplines

Next month the NAS training department will be launching  a new online training and awareness package called Ask Autism. The content is informed by adults with autism spectrum disorders, and most certainly covers sensory matters and autism in adults as well as children. People on the autism spectrum have been involved in the project from the start. The module on understanding autism does not use the term "triad of impairments". You can read about the training programme on www.autism.org.uk/askautism . That page has an email address for enquiries.

Hope that helps.