People who self-diagnose gaining access to services

Hope, I clearly cannot dissuade you from your purist perspective on diagnosis.

But how do we get visibility for adults on the spectrum? Apart from NAS undertaking campaigns?

How do we get research funded to better understand autism in adults?

How do we change the misleading perceptions that health professionals and government ministers have of adults with autism?

As a group mostly without gainful employment we cannot generate funds to help our cause. As a group characterised by the disability we cannot self-advocate to change how we are perceived.

Obviously we are grateful to NAS for standing up for us.

But I fail to see how this purist stance does anything to change our current situation.

The attributions you refer to are in subsequent postings, not necessarily by one specific respondent.  I used the word REAL to avoid having to write the longer explanations given. A succession of postings on this thread argue that certain people are not significantly impaired.

If you cannot name the organisation and they don't advertise their services as available to self diagnosers, where does your original concern come from?

I quote:

"A major autism organisation is giving access to groups/services for adults with Asperger's and high functioning autism to adults who self-diagnose.

Those who self-diagnose are highly motivated, unlike many adults with autism where motivation can be an issue.  They are more likely to attend groups than those with significant problems. These self-diagnosed adults as service users have a say in how services are run.  In this organisation, they want groups set up that exclude those with Asperger's and high functioning autism who have more problems than they do".

Hope and True Colors, I totally agree!

Longman, I suggest that you, calmly, re-read my posts before you accuse me of saying things that I haven't.  You have completely missed the point of what I was trying to say. Your misrepresentation feels very abusive. 

I have NEVER said 'only REAL people with AS/Aspergers are helpless and totally dependent on other people or hand-outs'.  I did write that people with autism often lack motivation because it's true.  But not all do.  Also, judging by your comments in another thread, you should look into the meaning of 'significant impairment'.  People with a diagnosis can and do hold down jobs, go to university, succeed in various areas, but will often need some sort of support.  The main purpose of a diagnosis is to access that support.

My posts are based on my own experience, which I thought I made clear.  I have a diagnosis of high functioning autism. As I have already stated, I was involved in an organisation where those who self-diagnose are offered services.  You won't discover the name of the organisation on the internet because they don't advertise that their services are open to people who self-diagnose and who get in touch with them.  And no, I will not name the organisation as I don't think it appropriate here.

I do not rely on charity, I am not dependent (a horrible word which I feel is often abused), but I do need support to live an independent life. Support is an enabler, a hand-up not a hand-out. And I too have achieved a lot in my life and I am very motivated, so I think it is patronizing to claim that people who need support are not motivated just because they have real problems.

I agree with you Longman about the need for more awareness of ASD in adults, but I disagree about widening the definition of AS to such a point that it becomes meaningless. Of course you can have AS and hold down a job and be successful in your own way (you are living proof of this Longman), but AS is diagnosed by a set of criteria which are quite rightly very strict and you have to show that you meet the criteria. It is true that many people with AS who need support slip through the net because their condition is not obvious, and yet they struggle with their 'hidden' problems. Only a trained professional can ascertain whether their issues are caused by AS or something else. Usually the diagnosis is correct, whether it is done privately or otherwise, but private medicine always carries the risk of diagnoses being 'bought', which is not such a concern with publicly funded medicine. 

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.

I also feel the need to point out that, despite campaigns by NAS, adult autism is practically invisible, little understood and not taken seriously. Why?

Children with AS are very visibly supported by parent groups, and form the core of how NAS got off the ground. But parent groups don't seem to cater for adults (though what happens to the "children" when they grow up remains a mystery).

Public perception (and Health professionals perception) is still governed by what parents' groups do.

Adults with autism/aspergers have little in the way of funds to support campaigns on their behalf. We are dependent on spin-offs from parent group funding. Very few find work or hold down a job. Those that do go without promotion and have a hard time. So we cannot fund visibility campaigns ourselves.

What wearies me about this thread (and others in a similar vein) is the contention that the only REAL people with AS/Aspergers are helpless and totally dependent on other people or hand-outs. This may be true for many people on the spectrum. But the argument doesn't win support from the NT world.

If you are going to argue that anyone with motivation isn't REAL. Anyone who has achieved isn't REAL. Anyone who has held down a job isn't REAL. You send a message that adults with AS can only function on charity. That message isn't doing us any good.

But if people who are diagnosed privately, or self diagnose, are in a position financially to PAY for services, their active funding may benefit us all in the long run. So I see the widening of the definition of AS as beneficial long term.

This thread started by Shrek who claimed that a major autism organisation was giving self-diagnosed people access to services, and that these self-diagnosed people were more likely to attend groups, and that these self diagnosed people wanted groups set up that were only for them and not people with significant impairment.

I asked to see the eviodence. Fact is, I cannot find this major autism organisation on the web. Maybe I'm looking in the wrong places.

The thread moved on to private diagnosis being wrong. I asked for evidence. I was told about someone privately diagnosed with ADHD that in the poster's opinion hadn't really got it. I'm still waiting for evidence private diagnosis leads to erroneous diagnosis. I know that NHS diagnosis is usually required for access to services.

Then it was "over-diagnosis" - apparently there's malpractice in the NHS leading to too many people being diagnosed.

This all sounds to me like "we had it hard getting a diagnosis - we don't want other people getting a diagnosis easier".

That may be my misunderstanding of "lack of empathy"

But until someone proves to me that there are unfair practices favouring self diagnosed people over NHS diagnosed, or unreliable private diagnoses, or a plague of "over-diagnosis" I tend to the view that this is scare-mongering.

Its all hearsay up to now. And I'm sure it offends people seeking diagnosis, fiinding it difficult to get diagnosis and not knowing what to do.

Wow - "scaremongering" is surely a little harsh?

Autism/AS is a complex and elusive disability which NT's have great difficulty in accepting and, in my opinion. self-diagnosis will only fuel their scepticism. It's this that surely causes those officially on the spectrum to have concerns.

Who are these people and what threat do they pose? Are they getting media attention or any other high profile that would lead to damaging effects on the perception of people with formal diagnosis?

I can understand if you've not enough going on in your lives to feed your anxieties, this scare story might fill the gap.

Most websites advise against it. NHS Choices (www.nhs.uk/.../aspx if I have this right), while claiming to have got its diagnosis advice from the NAS website, says "some people are happy with self-diagnosis and decide not to opt for a formal diagnosis" - take it up with NHS Choices if you are worried!

Autism About has a section on self diagnosis full of cautionary advice, and pages of people's self diasgnosis experience.  These mostly seem to be genuine people trying to solve genuine difficulties in their lives. Adult Diagnosis on the NHS seems to be a postcode lottery.

Personally I cannot see anything to be gained by fraudulently self-diagnosing. Those with full diagnoses are having trouble accessing resources.

I continue to view this thread as scaremongering.

Shek, I completely agree, could not have put it better myself. Before I got diagnosed, I was conscious that, having not been officially assessed, I could not be absolutely certain I was autistic and so I did not attend any social groups or support groups until I was diagnosed. I needed a diagnosis in order to be certain, and I was proved right, but only after a rigorous history was taken and after my parents were consulted. I decided to seek diagnosis because I was experiencing chronic mental health problems, which were getting worse, and I needed proper support. Autism and asperger's might exist on a continuum but it is nonsensical to claim that everyone is slightly autistic, and it is an insult towards those who are genuinely affected.

I don’t have a problem with undiagnosed adults trying to make diagnostic services more readily available.  But I do have a problem with people claiming to be autistic when they don’t have a diagnosis.  I also object to those who are self-diagnosed claiming to be representative of all autistics.

I do think it is profoundly wrong for organisations set up to offer services for people with autism, to offer services to people on self-diagnosis alone.

Many of these people will never get a diagnosis, even if assessed.  They just don’t meet the criteria. 

Presently, autism is understood as being a spectrum.  It could therefore be argued that everyone is somewhere on the spectrum i.e. from NT to severely autistic (most people, if they look hard enough, will find that they have certain ‘Aspie traits’).  But this would make it meaningless.  It would be like saying someone who is feeling a bit down one day is therefore clinically depressed.  Or take the example of Simon Baron-Cohen’s theory that autism is an extreme form of maleness, does that mean (if you accept this theory) that all men are autistic because they are all somewhere on the ‘maleness’ spectrum? There has to be criteria for a diagnosis of autism and access to services.  To be given a diagnosis, there has to be ‘significant impairment’.  Those with a diagnosis need services.  Having ‘articulate and determined adults’ claiming they are autistic without having a diagnosis gives a false impression to the public, and potential or actual funders, of the real difficulties faced by adults with autism.  It threatens what services we already have.

Hi Shek

Maybe I didn't make it clear but I actually agree with what you said in your original post.  While self-diagnosis may bring an element of relief, basically it's meaningless without a professional diagnosis. 

It's the difficulty of obtaining an official diagnosis that is the problem and which needs addressing and in may be, as Longman suggests, that pressure from  articulate and determined adults who believe they are on the spectrum and want this confirmed will do something to redress the present situation. 

Sorry for the delay in getting back to you True Colors.  The reason for my original post was that a large autism organisation has made some of their services open to people who self-diagnose, including staff run support groups, access to their training for people with Asperger's/High Functioning Autism, etc.  Please read my other posts for the reasons I think this is not a good thing.

I will try and address each of your points Longman.

The idea that Government Agencies do not understand the constraints on people with 'lesser impairment' is something that I agree with. The manifestations of AS in these instances can be very  subtle and yet the person can struggle to perform in a fast-paced work environment. Any mistakes could be misperceived as laziness, defiance or stupidity and bullying could result from this, which often leads such individuals to pursue an AS diagnosis in order to get some work-place support. I agree that more research needs to be carried out with regard to the needs of this group, members of which are are apparently coping well but are actually experiencing significant stress.

People with lesser-impairment should be given support if there are grounds for this. For example, stress management training, counselling and cognitive behavioural therapy are all techniqies that can and should be offered to this group. I am for support for all people with AS, no matter  how mild, so I agree with you here.

People can be affected by AS in many different ways, but we are all significantly impaired one way or the other, it is just that different areas will be a problem for different people. Some people will be extremely rigid and anxious, but only have mild social difficulties, other people will have severe social deficits, but could be relatively flexible and calm.  Clinicians should avoid taking a one-size-fits all approach, but the key criterion for diagnosis has to be 'significant impairment' at some stage in the persons' life. THat said, we should understand that people with AS can and do work and can lead productive lives, while still having a 'significant impairment' in one or more areas of functioning. The key word is 'significant': many people who are otherwise 'normal' can struggle to make friends and be introverted, but this does not necessarily mean that they are on the spectrum, which leads me on to my next point: AS and other mental conditions are diagnosed using an objective criteria and yet clinicians have to use their own subjective judgement and interpretation; some clinicians are more strict than others and this necessarily means that misdiagnosis can occur, although experts disagree as to how common this is, and to my knowledge little or no research has been fully carried out in this area.

Regarding my cousin, my immediate family know him very well and we know that he has a very 'normal' life: he has won many medals for excellant salesmanship in a fast paced retail environment, he is an active member of an orchestra, and he is in a successful long-term relationship. He is a bubbly, chatty and highly sociable young man. He has never been bullied, coped very well at school until the last few years when he has rebelled and played truent - as many kids do!. But his strict parents were having none of it, so they forked out a small fortune to get him privately diagnosed with ADHD in the hope that this would get him academic support. I think that he should have been allowed to pursue a vocational course because academics is not for everyone, but his parents want him to enter a profession.  I do not think he has ADHD and neither do my parents, although of course we have not told his family.

I agree that not all people with AS have anxiety, OCD or depression and I have never argued this. But if they don't have a mental health issue they will still  struggle significantly in some other area, be it the need for routine or sensory issues, which can create stress and make it hard for them to get on in the world, although this is not impossible given understanding from others.

Finally, I agree that AS cannot be cured and that professionals often do not understand this - I have even experienced this problem myself, so I understand that this an issue that needs to be addressed.

What I do feel is a serious issue, from what I've read about, seen at workshops and conferences, and seen when supporting others is that the medical profession often only seems to understand Aspergers Syndrom as OCD, Depression, obvious poor eye contact, over-sensitivity and some social skills issues.

So they then give people a course of psychotherapy and medication, and send them off as "cured". Blissfully unaware that they still have socio-interactive difficulties, sensory problems and fixed thinking that IS NOT TREATABLE using those sorts of medications and psychotherapy.

So when they then get into more difficulties and have to back for help, this is seen as them not trying or malingering.

And people whose eye contact isn't so obvious and have found ways and coping strategies for many of their Asperger derived difficulties are not taken seriously because they don't have the obvious "symptoms".

Much knowledge of adult aspergers still hinges around clinical assessment of people with depression and possible schiziphrenia and other resultant conditions.

The reality is, if you do not show these obvious characteristics or difficulties there is no help available.

Aspergers is really an unseen disability. Many people with severe communication and functional difficulties as a consequence don't show it in ways the medical profession recognise.

So there is possibly an  issue to be raised here that OCD and depression should not be the be-all and end-all of available treatment for Aspergers. And too much focus on this aspect is under-diasgnosing people with real difficulties, who are not getting access to help.

Maybe the health professionals need more access to the circumstances of people who are not OCD depressed. Or maybe the OCD depressed shout too loudly....

OK I'm going to get slated for that.......

But this perspective needed to be expressed.

Hope, I take on board your last point: "then Government Agencies will assume that people who look "normal" and who appear to be high functioning can work" , because I think you are right - that is happening.

Government Agencies are quite clearly, from reports and postings on here, misjudging disability on outward appearances or superficial assesment.

I don't think it follows that this leads AS not to be taken seriously as a disability.

I do think there is a real danger that NT led Government Agencies will be frustrated by apparent inability to work from people who cannot provide sufficient evidence. That is because there isn't enough understanding of the constraints on people with "lesser impairment".

The poorer understanding may in part arise because the focus is almost entirely on "significantly impaired" criteria, though I am unclear where that divide lies. Should people with lesser impairment receive no help at all?

I do worry about this statement in the first of your three latest postings:

"But I get frustrated when I hear about incredibly successful and social people claiming that they have a condition like aspergers"

Like your comments on your cousin's ADHD, I find that extraordinarily judgemental. Who made you judge and jury?

Are OCD, panic attacks, constant anxiety and tension exclusively definitive of Aspergers? You do seem to be saying that ONLY people with OCD and depression can be considered to be on the spectrum

I also worry that if too many very successful people are considered to have AS then Government Agencies will assume that people who look 'normal' and who appear to be high-functioning can work because AS will no longer appear to be a significant disability, which in my mind it is. I do not look disabled, and I can 'act normal', but behind this camouflage I am battling with constant but invisible anxiety. People like me can often fall through the net when it comes to state assistance, and I had to go to tribunal in order to claim Incapacity Benefit when I first applied. People with high-functioning, but nevertheless debilitating problems, could fall through the net still more if AS is relativised to such a point that the concept becomes meaningless.

I can delineate further my own achievements: I achieved a 2.1 History Degree at my local uni, just two points below a first. I have a strong work ethic and spent hours working on my assignments, reading books etc. No parties or social life for me at uni, but it paid off, and this was directly down to the positive traits that can come with having aspergers. However, at this point in my life I only left the house to go to uni; I never went into town or into any shops; I avoided walking past people in the street, and I did not travel out of my local area for three whole years.  It was only after I got diagnosed and got the correct support that I began to make massive progress, as is evident by all the voluntary work that I now do, which I could not have done if I did not have the security that support provides.

I have never said that it is not possible to have aspergers and not to succeed, if by success we mean battling against the anxiety every day, getting out of the house and volunteering or working in the community - a huge success for those of us, like myself, who have panic attacks, OCD, and constant anxiety and tension. I can't hold down a paid job at present because of my complex anxieties and visual-spatial deficits, but this does mean that I have given up hope of ever getting a job - I would really like to work in a supportive environment, and I certainly am not dependant. Sure, I receive state assistance and benefits, but I am entitled to these at the moment because of my disability and mental health problems. But I am very independent and headstrong, constantly challenging myself, and I do LOADS of voluntary work such as till work at Age UK and Oxfam etc. My support workers help me with this, but they stand back when I can do a voluntary job on my own. So I am not helpless or a victim of my fate, but I am an agent and an actor: I constantly push the boundaries all the time and raise the ceiling a bit higher.

But I get frustrated when I hear about incredibly successful and social people claiming that they have a condition like aspergers. As my Grandpa once said, it seems as though any one can claim to have a condition these days, and this does a disservice to those who really struggle every day, like myself and countless others. This is not a comment directed at you Longman because you have already pointed out your own struggles, which are genuine, and you clearly have aspergers as you have received an in depth NHS diagnosis. But misdiagnosis will inevitably happen in a condition like aspergers, which does not have clear-cut boundaries between it and 'normality'.

Please Hope can you demonstrate the existence of over diagnosis? Or even the possibility of over diagnosis?

It has been established that private diagnosis may not be accepted as a basis for suppport, evidenced by the experiences of several people on this thread.

So even if private diagnosis was letting people through who shouldn't, its not giving them obvious advantages claiming resources.

But I think you have to substantiate some of these assertions about mis-diagnoses, and people not really having aspergers/autism if they are able to cope, or achieve something.

I find it daunting to be told that if I don't need constant medication/pyschotherapy I haven't got real aspergers.