What information do professionals have?

@Longman: I do agree that the veil of secrecy over the professionals forum is odd.  What are they so scared of?  Perhaps there is a fear that if they discuss a particular case, albeit anonymously, that someone might recognise themselves being discussed.  There is a way round that though as they can lock individual groups so that you have to request "entry" and perhaps give more proof of why you want entry and who you are.

I don't even have faith that professionals are reading this forum as guests.  We are just the hoi polloi and have nothing of value to say.  I mean how could we possibly have insight into our own condition.  How could we possibly have ideas to offer that would move research and clinical practice forward.  We are just the dumb "sufferers" of this accursed condition.  I don't think it would occur to them to ask us what we need, and even if it did, what we need would not be funded so there is no point.

I believe, that like academia (and I am sure you will be aware of this in the tiniest detail) that snobbery is rife.  Academic snobbery feeds into professional snobbery as that's where all the academic types go once they have completed their education.  why would they change their mentality.  I have suffered the most appalling and open academic snobbery in the past, that staggered me.  Largely, professionals want us kept separate from them, unless we already happen to be an academic who has proven their worth and then come out as an Aspie later.

We have to know what is good for us, we have to be the guinea pigs being managed and waiting for the cure.

You can bridge that gap Longman, you may find the professionals forum disappoints but it's worth going in to add your tuppenceworth and shake them up a bit.

Longman: we are living with the condition day in day out, it is our primary risk. A professional is someone who has a third party risk, the risk is not direct to them. Therefore, not just with autism but all other areas in society, it just becomes a game, a political talking game with resources given out to the highest consensus story of the third parties acting as agents, middlemen, parasites, brokers, etc. It has nothing to do with autism, autism is just there commodity in which they deal in to create a livelihood. The game is deliberately confused by these third party experts to prevent others accessing there financial resources or getting a leg into the game. IT IS JUST A GAME FOR THEM. I am sure whilst I suffer..,  some fancy titled person are living in a nice surrey house with a new Audi and private education for there children on the back of resource funding.. It is all just committee table ********.  Please, pass the biscuits, Charles., Oh' I've an idea,, lets do a cycle run and havea champagne conference and give each other awards, fun, fun, gather some retarded looking autistic children together for a photoshoot, look at there big wide eyes, looking like a seal or a starving child in africa, give, please give more, we need the latest Audi car and a bigger house in Surrey and piano lessons. Autism the gravy train living for the middle class.

I commend you longman for trying to bridge reality into there illusion but unfortunately you can not win or influence to the core as the house owes the game, you are not a player,, you are there chip !

The NAS has never done any thing for me. How about you ?

Good points IntenseWorld, thanks

While I could have another try to get in on the professional forum I think the bigger issue is that those of us on the spectrum, and parents/carers, who use this community discussion group, do not get ANY information about the professionals' forum.

They can come in here as guests. We cannot go into ther forum as guests. We don't get told what they think about our discussions. More importantly we don't get told if they discuss any of the issues we initiate. And we don't get told what they are discussing. That's not fair play NAS!

Granted I might be reading too much into the significance of their discussions, particularly as reading what I can access elsewhere, they don't seem to be moving that fast in any direction that helps us.

What also shocks me is that they think we don't have opinions relevant to them (leastways that's my perception). They don't think they can learn from our insights into our own condition. That's pompous arrogance on their part if I'm perceiving their attitude accurately.

I know the NAS website offers a lot of guidance to benefit professionals, on many aspects including the impact of sensory overload.

What we don't know is whether professionals read this advice, or respect it for what it is. They don't appear to be learning from what NAS provides.

I feel NAS has a responsibility to find out whether professionals use the NAS guidelines, and if not why not? Otherwise what's the point?

And I do think it is time the professionals were more open, transparent and accountable.

Things need to change. 

@Longman: you may need to use a different email address and new username for that forum.  Wear your professional hat as it were.

I also think, ref NICE, that repetitive behaviours covers a vast expanse and is an individual thing which they probably don't recognise.  Someone may not have a physical repetitive action they carry out but may do something like obsessively write letters of complaint or obsessively think over something, those are still repetitive behaviours but may not get picked up as such.  I think they approach it the wrong way round, instead of trying to see if the diagnostic manual description is manifested in the individual as stated, they need to see how those traits manifest/interpret in the individual.

Still at least they recognise that there are adults with ASCs, they seem to be moving past believing only children with them exist and it all magically vanishes once they reach adulthood eh.

I have also looked at a background document to the NICE Guidelines for adults on the spectrum. This is about the work of the Guidelines Development Group from the National Collaboration Centre for Mental Health, which is chaired by Simon Baron Cohen. It is titled Recognition, Referral, Diagnosis and Management of Adults on the autistic spectrum.

This proposed modifying the Triad of Impairments by merging the Social and Communication Elements and replacing the rigidity part with something about repetitive behaviours. While these may be diagnostic, what it seems to me to lack is any comprehension of the sensory sensitivity and overload problems that probably explain many of the parameters they use.

As I've mentioned earlier the first parameter under Socoal-Communication Difficulties is "atypical eyecontact" whether staring too long or not making eye contact. They don't explain how they detect this or seem to comprehend that by adulthood many people on the spectrum hide or compensate this because they get told to look at me when I'm speaking, pay attention, don't stare etc so much that it is one thing resolved. Are these clever psychiatrisyts really asking people on the spectrum?

Likewise all the parameters listed seem to be similar tgo what might be expected of children without the impact of life experience up to and beyond 18, from which they define adult. Its a long list including social anxiety and loneliness. It includes difficulties keeping track of what a person needs to know - which to some extent is affected by background noise. I don't see any grasp of adult needs here.

But it is the reptitive behaviour and narrow interests section that is more worrying: "avoiding crowded places" is the first. Surely that's environmental (sensory overload) rather than repetitive behaviour or narrow interests?

Another is "preference for predictability and predictable events (watching washing machines spinning or trains going down tracks)" - is that an adult or child characteristic?

The subsequent discussion keeps talking about teenagers. While over 18 includes some teenagers I thought these were guidelines for adults! This mentions sensory and gastro-intestinal issues being very common, in the former 90% of those with a learning disability, but that seems to be all they know about sensory overload.

Is this really the peak of scientific understanding of adults on the autistic spectrum. It is a dismal outcome of the Act.

Surely NAS has better insight on what is going on?

Apologies I should have clarified. It is the Royal College of Psychiatrists (got that wrong to start with - not Psychologists), and it is their education and training centre, CETC for short, based in London and Leeds, which provides training guidelines for professionals. The document I described was devised by clinicians for clinicians to use in the assessment and diagnosis of adults on the autistic spectrum. There is also a support document but I need a member's reference number to access it.

The guide, as I said, while revamped for adults, still asks questions more akin to the original for children, and I don't personally think it can be of much relevance to the adult experience.

Also it is being promoted as training material, and training material based on the Triad of Impairments. Which probably explains why many health professionals think the triad of Impairments is adequate training material.

So much for the Autism Act.

Evidently 24 hours on the NAS information officers haven't found anything different.......

Does this professional discussion forum I cannot log into have anything to say about this betrayal of our needs?

Not all people on the spectrum have issues with eye contact, and many have learned it - it's not a diagnostic criteria, so I don't think that should even be part of any questions unless it's specified that it's not a deciding factor.

My GP isn't even aware that people with ASCs are entitled to reasonable adjustments or that people even with mental health issues are.  I have had to involve a MIND advocate and Healthwatch to try to get such adjustments.

I had to go to a meeting about my daughter at CAMHS and they were unaware of reasonable adjustments and didn't offer anything or ask me, I had to point out things I found difficult.

@Longman: What type of interview is this document intended for? 

Thanks Anil A - Mod.

I am continuing to explore this myself and have just looked at an interview checklist used by psychologists. It is by CETC produced by Royal Society of Psychologists in 2011, entitled "An Interview Guide for Adults with ASD".

It is clearly based on the questions in the triad of impairments used for children, and divided into sections with Triad Headings. It comprises questions that could be asked of a third party, questions that the individual could be asked, and observations for the clinician. I recognise some of the questions I was asked when being diagnosed 8 or 9 years ago, so I suspect the 2011 date is an edition not a sign of progress.

The adherence to the Triad, as openheart suggests is to avoid cross-over symptoms, means only such questions are asked. So most of the experiences of an adult are not considered, and evidently no change has been assumed to take place since childhood.

They just consider whether there is eye contact. There's nothing about adults compensating by looking at other parts of the face such as the mouth, so presumably if an adult looks like he/she has eye contact, that's all there is to it. There's a question how far the individual uses their eyes to convey meaning - like how do they gauge this and would the individual understand?

There's nothing at all about the day to day stresses experienced, nothing about sensory sensitivity or overload. There's nothing about things an individual finds uncomfortable.There's a brief question about what an individual gets anxious about. But beyond the purely diagnostic framework there's no new knowledge about what adults on the spectrum go through.

The fact that workplace, college or university are referred to there's no difference to what might be asked of a child at primary school, the questions thus being very simplistic and superficial. Individuals are asked to comment about whether they had language delay or were too literal, but surely there are parameters appropriate to adults. There's a question about bullying at school - what about the workplace?

It asks what happens at parties, which might be apt for a child, but no questions more relevant to an adult, or even whether the adult avoids parties. Questions about how people show affection are equally vague and naiive.

This superficial adaptation of an interview for children to fit adult needs is grossly inadequate, totally unscientific, and a gross failure to address important issues for many adults. I have to question the professionalism of the people who designed this.

I'm shocked....not altogether surprised because it explains what we all see happening....but this is an interview guide supposedly designed by professionals. Surely we have a right to expect vastly better than this?

Longman - I've passed this onto one of our information officers and am waiting on a response.

I have yet to be in contact with a professional who understands autism.  And I am including diagnosing psychiatrists and specialist nurse practitioner in Asperger's in that statement.  Never mind the remainder who don't pretend to specialise as they are general mental health but should at the very least have a basic understanding of what it means to be autistic.  No doubt there are a multitude of autistic adults who have been in contact with MHS over the years as undiagnosed adults suffering secondary/related mental health problems, and not one of them was picked up as potentially being on the spectrum.

You can kind of excuse GPs, they are after all, GPs.  But MHS professionals not understanding or being aware is inexcusable, autism Act or no autism Act.

MHS are refusing to help me point blank, despite my GP writing to them requesting they support me with my AS.  They use my mental health issues as a reason not to give me mental health support .

I am now requesting an assessment of need from social services, no doubt that won't make any difference either.

I was thinking more broadly of all the different professionals who work with adults on the spectrum.

I take the point about psychiatrists and psychologists being stuck in their ways.

But the Autism Act is obliging local health service providers to educate staff to support adults better, and there are also moves in response to the act in employment, education and other services. What explanatory guidelines do they use?

NICE 142, the recent guide for adults, opens up early with ways to spot if someone is on the spectrum, pages 7 to 8, with a text which looks awfully like the Triad of Impairments, with a few embellishments about holding down employment. I'm not impressed.

It looks to me as if most of the training material being sent out is framed around the Triad of Impairments. The shrinks are a problem we've always had. This is something more serious.

Moderators, any insight please?

One thing to bear in mind about professionals dealing with autism is that they are practically all psychiatrists and psychologists, and the fact is that these professiona need a HUGE overhaul. They are absolutely useless.

Just look up any forums about mental health and there are so many people who are amazed when they actually ask for help for their OCD, anxiety, depression, substance abuse, eating disorder etc. that the help offerred is very very poor.

These professions assume two things. First, disordered thinking, NOT as is much more usual a poor environmental situation. Second, that this disordered thinking can be changed by the use of pharmacology, again a big idea that is often incorrect.

The profession has known for years that environment is the main factor in mental health issues, BUT they are prevented from taking steps to change that by the guidlines of their profession.

Taking this into the realm of the developmental disorder, they just don't know what to do. They realise that if there is an unchanging pattern of behaviours then neither of the above assumptions is correct but these are their only tools. So, they retreat to a very rigid set of "rules" for diagnosis and any treatments. In short for those with autism and no learning disability they repeat parrot fashion what is written for diagnostic criteria, then retreat to the (mostly useless, especially the older the patient) tools of their profession.

Lastly, remember that even very well researched and long established medical conditions like athritis are still, by some doctors , being trated with outmoded medicine, so it unlikely that more uncommon, nuanced and, for NT doctors, difficult to understand conditions like autism will be treated in an old fashioned rigid way.

My understanding of The Triad of Impairments is just for a classification diagnosis purposes, not actually for practical day to day use. These triad of impairments do not crossover into other conditions and therefore highlight the condition for diagnosis purposes. It is only relative to a cluster of Autism.

There is lots of over conditional symptoms of autism, but they crossover into other conditions say anxiety, ocd, depression, phobia, etc.

I think the need for prediction should be on the list of impairments, but there again that would crossover with ocd and social anxiety/phobia.

So the texts are OFF NO REAL USE, strange how they are promoted as such, as if it is a guide to fix people with autism.

For me, my personal experience is that my condition is very complex, it crosses over into many other secondary conditions, Autism is the least of my worries it is all the other surrounding crap that goes around it.

So I think your post is a good point, but it is not even to do with autism in children nor adults, it is aimed at clarification of purely autistic symptoms, like the way blood is categorised.