People who self-diagnose gaining access to services

Shrek, I agree with you. I think though as others have said here that there should be groups for those who are seeking a diagnosis or who don't want one but also groups for those who have gone and got themselves a formal diagnosis.

I know a group set up by self diagnosed people and it is only once they are up and running that those with a formal diagnosis are invited to join. I also used to attend a peer run Asperger group and sometimes the majority of people attending were self diagnosed and I would feel very Aspie in comparison to them even although I have managed to hold down a job for most of my life and make NT friends. I would be very nervous about meeting up with another person who I didn't know well on a one to one basis regularly but some of the self diagnosed people in this group don't seem to have that problem at all.

Sometimes I get the feeling that people who are misfits in general feel included if they come to an Asperger group and therefore identify with people on the spectrum. Most people with an ASC are very accepting of difference so it works both ways.

I think many who self diagnose will be on the spectrum but also there are many who won't. Because it is a spectrum the traits have to be of a certain degree of severity to merit the diagnosis. I think most of my family have strong Autism traits but not to the degree that their lives have been disrupted.

Reading through this considerable number of replies has left me quite agitated.  Personally I am not diagnosed by the NHS with autism.  My recollection is that they have me diagnosed with something far more bizarre and harmful which I am certain is an inappropriate diagnosis.  I don't have the time to be going to the doctor to finesse every detail of my diagnosis though.  As it is I go to a doctor that I have to walk four miles to reach unless I want to take several buses and take the extremely cicuitous road route.  I don't think I have seen the same doctor twice in the last two years.  The closest they have come to making any kind of successful diagnosis on me is when they almost killed me with statins 6 months ago.

I spent most of my life in bedsits and squats, eating out of bins when I didn't have any money until I was forced to start taking medication when things got too bad.  Since then I have got a first class law degree and unlike most people my age I seem to be finding it easier and easier to learn.  I am not highly paid but I am doing work that I enjoy.  I am able to communicate fairly well with people and some of my symptoms are the polar opposite of what are considered to be normal Asperger's syndrome symptoms.  However, I have the internet at my fingertips and I have the evidence all around me.  I know that the issue I have is a high functioning autism issue.  I also know that the majority of doctors are no more intelligent than anyone else.  In fact due to being general practitioners their knowledge of specific conditions is necessarily as a consequence limited.

I don't want to waste the time to go through series of tests to prove that I have one specific condition rather than others.  I have an intellectual understanding of all the issues surrounding my ability to interract with the rest of the world.  What I do not have is the strength to leave my house to do anything other than work and obtain food.  

I know I am not alone in this.  All across the country/world there are incredibly intelligent people who are able to research and understand intricate psychological and neurophysiological conditions and huge numbers of them are trapped in dingy houses feeling incredibly lonely because the only people they meet when they do go outside are nothing like them.  I am sure a lot of them feel like they are the only person in the world that is the way they are. If people like this have a flag under which they can gather their strength and find other people out there in the world who they can relate to and understand then they should be allowed to do that without having to jump through hoops for some overworked doctor who has got far more important things to be doing with his time, such as stopping people from dying.

That's easy to explain.

Collating interviews and questionnaires that would probably form the basis of such research is a Social Sciences problem (not much funding).

Medical Science on the other hand, thats about big bucks, massive overheads for big international institutions and university research centres. Lots of hi-tec including scanners and brain activity measurements. High profile scientists. International conferences, high profile academic publication in the best refereed journals, professorships, competition between universities.

So what we do is search for the causes of autism. Never mind that after twenty years we are no nearer agreeing. That's not the point. The objective is big money circulating in prominent universities.

Ah, but....I hear you say...there are people out there on the autistic spectrum currently struggling to cope, both children and adults. That's a social services problem  (not much funding).

It would be the death of this or that university if we got mixed up in that sort of thing......

longman said:

...Even stranger, the accumulated knowledge of all those late diagnosed adults in terms of their coping strategies and techniques for fitting in, isn't being fed back into the provisions for helping young people diagnosed early in childhood. We are still proliferating the mistakes with children, because no-one can agree or assimilate that able adults could have experienced similarly difficult lives when younger.

This is something I can't understand.  One would have thought that the experience of late-diagnosed adults would be invaluable to professionals and researchers yet this isn't the case.  I wish someone would tell us why.

Scorpion has highlighted another issue - ways of finding out about coping strategies that work.

Although when I got diagnosed I got some follow up counselling, I basically had to find this out for myself. I had certain advantages in being both a teacher and disability tutor that I had income and other reasons for research (to help others who I was helping to support), so I bought lots of books - over the years some sixty books. I've recently pruned out about a third of these.

The problem is there are just too many of these, from too many different angles, and at very varying standards. I bought some that looked potentially good and seemed to have the right content, but proved to be written by clinicians whose knowledge of Autism was limited to a few patients they had seen, and whose contribution to understanding was largely guesswork, certainly without academic underpinning or networking.

I even encountered one book on aspergers in higher education written by a team of academics based on their experience of ONE student!  When I took this up with them they were unhelpfully defensive and indignant. They didn't see anything wrong in doing this.

The problem as I see it is a proliferation of books. Everyone is on (grim metaphor) the ASD "bandwaggon".  Some publishers churn out book after book with little real concern about whether this is just overwhelming people with unhelpful material.

I have found very few books that actually help with coping strategies. Some of the best are the autobiographical ones (of which the stars include Marc Fleisher and Luke Jackson) but again they are one individual's response. The worst are those do gooder ones with lots of blank tables for you to structure your own life around a few untried homilies and "old wives' tales" - loads of these so-called self help books by people with barely any real grasp of what people need.

I find this really worrying because a lot of people out there desperately need good coping strategy guidelines. Surely this should be a priority. It is clear that post-diagnosis support is non-existent, unless you have other clinical problems requiring CBT or drugs. So really good, authoritative books on coping are vital.

If some publishers could just stop and think for a minute what it is they are trying to achieve, we might get somewhere.

But also could NAS have a serious think about this. It means collating the experiences of a wide range of people on the spectrum to find out how they cope and drawing together an accessible and readable synthesis.

Not difficult surely? And it would make many lives much more livable.

longman said:

Even stranger, the accumulated knowledge of all those late diagnosed adults in terms of their coping strategies and techniques for fitting in, isn't being fed back into the provisions for helping young people diagnosed early in childhood. We are still proliferating the mistakes with children, because no-one can agree or assimilate that able adults could have experienced similarly difficult lives when younger.

Or, indeed, between adults.

In fact this, in a sense, is part of the kind of support I seek - help with dealing with the neurotypical world, because, well, to a large extent I don't cope - my strategies often don't work, and I'd like to learn some that do!

But I've not been offered anything like that! I, or rather my Parents and Housing Support Officer, are having to fight to get Social Services, and my GP, to provide me with anything at all - if I didn't have my Parents and HSO, I'd have nothing.

I'm left wondering who has the Aspergers? Us? Or the health professionals?

In a sense you've hit the nail squarely on the proverbial head there, longman - Asperger's, and Autism more generally, is not so much a disorder of the individual, but rather a disorder between individuals, and maybe the neurotypical world is so reluctant to help us precisely because they, at some level, realise this and that, in part, to do that, they themselves would need to change.

That's the nub of the problem. Until very recently the majority of adult diagnoses were made by clinicians, including psychiatrists, treating other disorders where autism or aspergers was identified as contributory. So there are many people around with diagnoses of schizotypical disorders where the clinicians have not been able to distinguish the presence of an ASD.

In contrast those adult diagnosis of people who recognise the symptoms in themselves and seek a diagnosis are for the most part being processed through an entirely separate network.

And self-diagnosis and private diagnosis doesn't seem to access services.

Unfortunately health workers haven't managed the joined up thinking yet, though this is not helped by the economic climate and the various short-sighted amalgamations, reorganisations and privatisations of clinical services (due to politicians who know absolutely nothing about either diagnostic route).

What I feel is saddest about this whole debate is that those of us who have struggled through life without diagnosis until late, and who found solutions and strategies to help fit in better are largely ignored by health professionals, because we sometimes no longer seem to have diagnosable symptoms.

Even stranger, the accumulated knowledge of all those late diagnosed adults in terms of their coping strategies and techniques for fitting in, isn't being fed back into the provisions for helping young people diagnosed early in childhood. We are still proliferating the mistakes with children, because no-one can agree or assimilate that able adults could have experienced similarly difficult lives when younger.

I'm left wondering who has the Aspergers? Us? Or the health professionals?

NAS11521 said:

[quote]I am very concerned that widening the definition to include people who are no more than 'geeks' or 'eccentrics', but who have no problems, will make the diagnosis meaningless and this will be a bad thing for people with AS who struggle with the condition.[/quote]

What proof do you have that these 'geeks' and 'eccentrics' have no problems?

And why should you have to have 'problems' in order to get a diagnosis anyway!?

Surely what many of us on the spectrum seek is precisely to live in a society that accepts our differences, and would it not be the case that in such a society we, ourselves, would indeed not have any 'problems' too?

Would that change the fact that we are Autistic?

I think not!

And, is it not possible, as implied by True Colours, that some sub-sections of society are already accepting of the differences caused by Autism (and therefore any autistics within that sub-section of society would not have any 'problems')?

I can't get the help I need because the doctors in my area do not have enough training to properly diagnose autism, and favour pushing a diagnosis of some other disorder that was more trendy when these doctors were being taught in school.

I know for a fact that I am autistic because of the sensory problems I suffer from that I have seen so many diagnosed autistics complain about on online forums, but I am stuck with diagnosis of a personality disorder instead of a physiological disorder of the brain because these doctors are simply more heavily focused on identifying the former than the latter.

Something like a schizotypal disorder is only supposed to be diagnosed in the absence of autism, because both are said to cause very similar social difficulties, but there are certain traits which are only present in autism and not in schizotypals, such as sensory difficulties like being caused discomfort and pain by certain sounds, textures etc. I suffer greatly from these things but can't get the support I need because I was diagnosed by an underqualified doctor who does not know the difference.

How is a self-diagnosis a bad thing when I am in a unique position to understand the exact problems which I face and which needs I have, when these doctors know nothing about these things?

I have had to sit and rot in a room for my entire life unable to work or do anything else because the "professionals" decided I needed completely ineffective treatments for a disorder which I do not have, instead of getting the right help for the right problems. But of course, they read a few books about some disorders which I do not have, and got a fancy little piece of qualification paper certifying them to identify and treat those things, making them a "professional" and making their opinion more valid than mine, regardless of the fact they know nothing of autism to either diagnose or dismiss it, while I have a lifetime of first hand experience in dealing with problems documented as being specific to autism and not to their favourite little pet disorders.

If I could get the help I need for autism through a self-diagnosis it would change my life, while a conflicting diagnosis from an undereducated doctor literally ensures that I can have no life to change.

Hope said:

I am very concerned that widening the definition to include people who are no more than 'geeks' or 'eccentrics', but who have no problems, will make the diagnosis meaningless and this will be a bad thing for people with AS who struggle with the condition.

What proof do you have that these 'geeks' and 'eccentrics' have no problems?  They may have achieved success by their abilities but that doesn't mean that they haven't the same problems as the rest of us on the spectrum.  If you are brilliant in particular fields you will be either tolerated as an employee or accepted as an employer - that's the difference between them and the rest of us!

It seems logical to assume that among the population who reached adulthood before autism or AS had been recognized a considerable number are on the spectrum.  This is almost never publicly acknowledged because of the cost involved if they all applied for diagnosis and as a result it is extremely difficult to obtain such a diagnosis. as an adult. 

However, I don't think this should mean self-diagnosis because (as I said in a previous post) it will fuel disbelief among NTs that the condition actually exists. Too often disclosure that one is on the spectrum is met with  disbelief and words to the effect "Well, I'm a bit like that but I've never thought I was autistic."!

I feel that one problem with late-diagnosed AS is that such people have been forced throughout their life to cope with the problem unaided and that skill at 'covering up' disguises the fact that they have always operated under considerable stress, although to the outside world they've operated successfully in terms of work and relationships,

How can a diagnosis be withdrawn? ASD is a LIFELONG  condition caused by a neuro-chemical imbalance or structural difference in the brain. The person has had problems since infancy and the parents would have always known something was different about their child. It is true, a person can improve significantly in some, if not all , areas of functioning but they will still have ASD. What matters is that in childhood, at least, there were significant impairments, and even if a person has improved significantly, these impairments can throw up new problems such as mental health problems. Sometimes diagnoses are removed by inexperienced professionals who have no idea how ASD works, but I don't think it is likely that this happens often.

I think that most professionals give correct diagnoses. The professional has been trained, they have seen ASD in many people, should know the different manifestations and therefore are in the right place to confirm or debunk, as the case may be, a person's suspicions that they may have ASD. Think about it like this: should people who self-diagnose with a chronic physical condition be offered medicine and therapy prior to official diagnosis? The answer would be no, and this could even be dangerous, let alone the fact that it diverts funding away from those with an official diagnosis. Clearly ASD is different from a 'physical' condition in that it is 'invisible' and there are no blood-tests or brain scans to diagnose it at the present time. But there is still objective criteria that a professional has to use in order to diagnose correctly. Possible mis-diagnosis may well occur because of the subjective interpretation aspect of diagnosis, but I think that over-diagnosis is not that common, although it is still a concern, particularly if the definition is widened still further!.

Also, I agree with Shek: relevant support should be provided before diagnosis. For example I saw a support worker from the mental health team before I was diagnosed, for an hour each week, but before diagnosis I did not receive any asperger specific support. And I understood the reason: I had not yet been diagnosed, so how I could be sure I had ASD without professional validation? We like to think that the individual knows best about themselves, which is true to a point, but we can also get ourselves wrong!. Our emotions can outsway our reason and so we need an objective analysis too, which is where the professional comes into the equation.

I should've written 'I have never said people who self diagnose should be excluded from all services...'!

Jim V, thanks for your balanced input.

Longman, I have never said people who self diagnose should be excluded from any services.  There is obviously a place for pre-diagnostic support which is designed for those who haven't yet had an assessment.

Yeah, no worries Longman, I realise you hadn't read it. And I would like to be clear - I can understand both sides of this argument. Especially in a time when diagnosis, for reasons other than medical assesment, could become more difficult it's important to recognise people how important support may be before diagnosis. 

But I can also see the points around self-diagnosis and the problems that could create within services, especially those services that focus on being lead by their members.

It is weird how new postings timed earlier don't appear when writing. I guess they only refresh when you log out. Hence, while I take your points on board, I just appeared to be adding my last comment at 22.37 to my previous comment at 22.17. So JimV Mod's advice at 22.29 didn't appear there until after and leaves me looking like I'd ignored it.

I accept the point that people's feelings without evidence are valid, but there really have been a lot of claims in this thread about the validity of private diagnosis and the appearance of over-diagnosis. Some facts would help.

And can I add that there must be people logging on here who only have self diagnosis, because they cannot get anything better, who cannot feel good faced with the strength of feeling against self diagnosis. If NHS diagnosis was uniformly available UK wide that might be different.

Besides, you describe NHS diagnosis as if it is an absolute.

My understanding is that some people are refused a diagnosis if it is felt the diagnosis would not be helpful. For example they might be self harming or a suicide risk and the diagnosis could worsen their situation. If that person then presents as self-diagnosed, are they to be refused help?

I also understand that a diagnosis can be withdrawn, if it is felt that the diagnosis is no longer beneficial or circumstances have changed.

The diagnosis is largely circumstantial, even if school reports and an older adult can give information. It is mainly about a professional interpreting the same questionnaires and evidents that self-diagnosers use. Plenty of websites warn about self diagnosing illness. So obviously a professional diagnosis is crucial.

I've yet to see evidence as to why people who self diagnose should be refused access to services, nor reasons why they should be refused access to services special to self-diagnosis. There is now a significant group and some authorities seem to accept their existence - I gave the example of NHS Direct.

Undoubtedly there are some people using self-diagnosis for the wrong reasons. But the availability of NHS diagnosis is very variable around the country. Some people may not be able to get anything better than self diagnosis.

I don't see any evidence of self diagnoses competing significantly for resources.

I don't understand why you feel people who self-diagnosis should be totally excluded from getting help.

Hi, 

Just to say any discussion like this is likely to be based on personal experiences. It may be that those experiences can't be backed up by evidence but that doesn't, in a conversation, make them any less valid for discussion. 

There's clearly always going to be very different views around self-diagnosis, especially where this impacts on the way a particular service is run. 

I don't think it's necessarily helpful to dismiss those concerns as being untrue - they may not reflect any wider problem in service provision but if a particular example is the centre point of a discussion then that has to be treated with an assumption of validity. 

I'd certainly agree that naming a particular organisation would only raise significant problems in a public forum, especially where the issues involved are challenging. But it's been an interesting starting point for an very valid discussion. 

It would be great though if we could bear in mind the right of people to express their own personal experiences; that being worried and concerned isn't the same as scare mongering and that we're all hear to enjoy discussions - though admittedly around subjects that people feel passionately about. 

And I do think it's fair for everyone to bear in mind that there's a few different issues, some looking at current experience, some looking forward to find valid steps to make changes, and the way those play together can sometimes make comments seem more challenging than might have been intended. 

Always worth clarifying each other's perspectives in a long discussion and giving people the benefit of the doubt.

Where I'm coming from is simple. I don't see any harm in self diagnosed individuals accessing services if they are able to. I'm not convinced they can

So far no-one's offered any evidence that this constitutes any threat to funds available to those with NHS diagnoses.

Though I have witnessed a lot of paranoia - in Harry Potter terms you don't want muggle borns in Hogwarts.

Longman, I really don't understand where you're coming from.  Your arguments seem to have little relation to what's actually been written in this thread.

Perhaps I shouldn't respond at all.  But I will repeat that what I've said about the organisation offering services to people who self-diagnose is what I've actually experienced.  I have raised my concerns with the staff and this is an ongoing process.  Because I won't name the organisation publicly (I think it would be unhelpful at this stage) shouldn't negate what I've experienced or the points I'm trying to make.