People who self-diagnose gaining access to services

one swallow doesn't make a summer........

Does this totally not fit an ADHD profile, Hope?

"moreover he has a sales job within which he is very successful; he has a girlfriend, and he is personable and is sure to do well whatever path he chooses to take, although he is not academic - much to the bane of his parents"

I'm not sure what to make of all the personal stories of life with autism/aspergers I've read. Some may be unconvincing diagnoses. One book I think you should read is "Send in the Idiots - stories from the other side of autism" by Kamran Nazeer.

Something NT Society expects of disabled people, not that they often give rewards or adequate recognition for the hardship endured - people who strive against adversity and succeed. There are numerous examples in the literature. To use the example you previously raised of dyslexia, some people have achieved great things despite it, and that wins recognition, respect and funding.

Now I know that some people on the spectrum are going to have a really tough time achieving much because their symptoms are severe. There are others I think who do fight and achieve - there are plenty of books about it.

But you seem to be saying anyone who is in any way successful hasn't got aspergers. NT Society is unlikely to be sympathetic with any disabled group that demands to be treated as helpless and dependent for life, if they cannot clearly demonstrate why they shouldn't be able to achieve.

That may be behind adverse medical, DSL and benefits rejections. It is hard to accept  people who claim they have no way out of dependancy, however justified.

And for parents out there, you've got to believe in some sort of future. For people with full autism or very marked aspergers that might be reality. But I think it is a flawed argument to present all forms of Aspergers as a no way out diagnosis. Or to claim anyone who does get somewhere was somehow down to over diagnosis.

Regarding over-diagnosis: I can give you one example of a case that I believe was given a diagnosis when the behaviour could have been explained differently, and the diagnosis was done privately. My 16 year old cousin was not doing well at school academically. He would not concentrate and preferred to spend his days  riding around recklessly on his bike. He has always been a very active boy but his parents had never suspected that anything was wrong until this moment. His sister is an academic high-flyer and is studying law at university. Both parents are very middle-class (their mum is a top consultant and boss at their local hospital and the dad is a teacher). My cousin was diagnosed with ADHD last year, but my own comparatively humble immediate family think he was given a diagnosis because of his pushy middle class parent's fears that he would not end up in a professional career. My mum has always known I was different, but she did not have the money or the power to get her voice heard. I have had noticeable problems since infancy, but my cousin has not. Moreover, he has a sales job within which he is very successful; he has a girlfriend, and he is  personable and is sure to do well whatever path he chooses to take, although he is not academic - much to the bane of his parents.

I think that pushy parents with power and money can 'buy' their children a diagnosis, be it ADHD or Asperger's, when their child is 'normal' but not academic.

In answer to Hope, who says:

"we must not shy away from exploring the wider ramifications of possible 'over' diagnosis of AS in our society"

once again, where is your evidence of overdiagnosis?

Most of what I read in the discussion groups is about people, both children and adults, having a great deal of difficulty getting a diagnosis. The system seems pretty tough about eligibility for diagnosis. So these wider ramifications seem to me to be about fantasy 'over' diagnosis.

Shek said:

Longman, I still think there is a serious issue about those without a diagnosis gaining access to services.  There are only limited resources available, and more cuts are inevitable.  A diagnosis implies 'significant impairment' and need of services. 

To open services to anyone who decides that they have high functioning autism or Asperger's without a formal assessment can only put what meagre services that are available at serious risk.

Is there any proof that those without a diagnosis are gaining access to services?  I can't believe that GPs would make referrals without a formal diagnosis.  Isn't it perhaps a case that people who self-diagnose are merely continuing with the treatment they were receiving before they made their self-assessment?  They may tell their counsellor/therapist  that they believe their problems arise from being on the spectrum - and this may be a help in their treatment - but that's as far as it goes.

I don't think I have called you a 'borderline' case Longman. For a start, I do not know how your AS manifests itself in your day to day life, so it would be rather  brash of me to assume anything about your personal situation. From what you say, it sounds as though you have found good coping mechanisms to help you navigate the social world despite the fact that you endure anxiety and other problems as a result of your AS - it sounds as though it was very beneficial for you to get a formal diagnosis.

But I think that the points that Shek makes are valuable ones, and we must not shy away from exploring the wider ramifications of possible 'over' diagnosis of AS in our society. This is an uncomfortable topic but it is one that should not be overlooked.

The question we should ask is to what extent we should take such an inclusive approach to diagnosis that we completely relativise all distinctions between 'difference' and 'normality', or whether we need to diagnosis people who are struggling and find life difficult, and that we should have a clear empirical distinction between clinical AS and 'normality'.  I do not have a fixed notion of where I stand as yet, so I can truthfully say that I abide by no dogma in this discussion. I can see both sides of the argument. However, I am more inclined to side with the empirical distinction group than the 'get rid of all boundaries' group.

There is a further point I'd like to make. In this and other threads I got some stick for being borderline. The argument was that because I have good coping strategies, and hold down a job, and manage to be independent, therefore I'm not a "real" Aspie. Hence I'm accessing services I don't deserve.

I put my hands up. It may be true to some extent. I'm very lucky. I managed to get to 55 without a diagnosis. I'm probably therefore very mild.

But I haven't claimed any services. I haven't received any allowances - or claimed any. True I got a few hours counselling after formal NHS diagnosis. I respect the diagnosis I got - I really do appreciate and value it. But I haven't asked for any money or taken up services.

One of the objections raised is I don't have OCD or depression (well none that needs medication or outside help - I admit I'm fortunate there). But OCD/depression is comorbid/consequential of ASD, not definitive. I agree that and dyslexia and other comorbids make things very tough for people on the spectrum.

However ASD is about communication, sensory issues, focus, routine. Those things I recognise make things very difficult for many people on the spectrum.

Some people have milder diagnostic systems but other comorbid problems,. It was claimed real autism meant OCD and depression. I don't think that's true.

I did have a tough childhood, severely bullied, educational set backs, developmental problems etc. I still have real difficulties with informal socialisation, I've just been lucky and got a better grip on formal interaction over many years that enabled me to get qualifications and hold down jobs (not without a lot of difficulty though).

What I've challenged in these threads and postings is the assumption that someting divides "real" autism/aspergers from supposedly borderline diagnoses, that I think are unwarranted claims without regard for the effects on people.

Well what's your evidence that this is happening?

Are services being offered to people who donb't have a formal assessment?

When did I argue that people who just think they have aspergers or autism should have access to services?

All I said was that sometimes when more people identify with a problem that brings money into the system. People self diagnosing are raising the profile.

The big problem for people on the spectrum is that they are not a strong voice for change. Only a small percentage have a secure job. Very few therefore have funds. 

Parents' groups do have the funds, and to a large extent making organisations like NAS possible. But the flaw is that they are still mainly concerned about children. There is nothing much for adults, except in as much as NAS has raised this in recent years.

Dyslexia, even quite severe dyslexia doesn't prevent people getting employment, having good incomes, being able to raise funds. Aspergers/Autism is very particular in creating an adult group without much clout.

My concern about an "exclusive club" was that some correspondents on here were claiming there were too many people getting diagnosed because of falling diagnostic standards. I do perceive here an element of "shut the doors....don't let anyone else in". And I do think it is appropriate to challenge that kind of thinking.

I think also paople on the spectrum, however disadvantaged they feel, have to have a more realistic philosophy about how to win friends and influence amongst the NT population.

Because if you keep moaning - unjustifiably - you'll only get ignored.

Longman, I still think there is a serious issue about those without a diagnosis gaining access to services.  There are only limited resources available, and more cuts are inevitable.  A diagnosis implies 'significant impairment' and need of services. 

To open services to anyone who decides that they have high functioning autism or Asperger's without a formal assessment can only put what meagre services that are available at serious risk.

You mention an 'exclusive club'.   I think this is part of the problem.  Many see the labels Asperger's/HFA as positive, linked, as they see it, to being intelligent, a whiz on computers, to people like Einstein.  A 'club' they want to belong to.  However, the reality for many with a diagnosis of Asperger's/HFA is very different hence the desperate need for support services.  Having people who identify with the 'Einstein' model being given access to services without any assessment/diagnosis makes no sense at all.   Identification with a condition is not the same as having it.  Do people receive support for dyslexia without an assessment to see if they have it?  Do people receive treatment for an illness without first having a diagnosis?  Why should Asperger's/HFA be an exception?

Thanks True Colors....I may be getting a bit obsessive about another posting. I appreciate your perspective on this, and yes - these anxieties are being expressed in some circles.

I would raise here that parents groups have been vital to getting things done for people on the spectrum, and I was briefly on the board for one (but took ill and had to withdraw).

However they are about parents, and parents' experiences some of the time, and they seem to allow less involvement of people on the spectrum, who are often present in adulthood as having always come along with their parents, rather than being there on their own account.

The lobby for those with children who are affected is strong and justifiably has a voice. But understanding adults and how they cope without having had conventional interventions in childhood could go a long way to helping us understand how to approach the condition in adulthood.

Much obliged for your input.

Longman, I'm sorry if what I posted was confusing. (a), (b) and (c) are not what I think - they are views that have been expressed on another website from people who appear hostile  to adult diagnosis.  It seems that some parents with children on the spectrum  fear that the cost of adult diagnosis and treatment will mean less resources available for children and also worry has been expressed that if adults use an AS diagnosis to get help in their work situation this may lead to employers not wishing to take on young AS sufferers.  I find the fact that some people feel  this way very depressing.

I agree with everything you say in your post, particularly "People who didn't get diagnosed young have often lived dreadful lives, and here we get this "private club" attitude, oh we're letting too many in, standards are dropping, etc".

As I say, I'm sorry I didn't express myself better and I hope this post clarifies things.

Not at all Longman. I am a case in point. I have AS but my symptoms  have improved as I have older, and I am far from dependant on anyone, although I require support to help me  make progress. Support has enabled me to volunteer in the community and to be an active citizen.  I do not believe that people with AS are doomed to suffer, will inevitably be helpless or dependant. We are agents and not simply victims of our fate, and I have never argued to the contrary, so I think there has been a misunderstanding.

There is no private-members club, but there must be a wider debate about the potential pitfalls of private medicine.

Are there really problems with the private diagnosis route? Evidence rather than  hearsay would be welcomed in order to put this debate on an informed footing.

What law are professionals breaking?

Sorry if I seem to be being pedantic, but these posts do seem to be following the line that autism diagnosis is for a private club, and something needs to be done to stop somehow unworthy persons getting in.

What I think also ought to be considered here is the notion that "real" aspergers is devoid of any chance of improvement (as distinct from cure), so older people who show signs of their asperger traits ameliorating have to be excluded from the definition. It hints at pepople arguing their right to be helpless and have everything done for them. Except a lot of people don't have that advantage.

I agree for some the severity of the aspergers means they need lifelong support. But are you saying "real" aspergers cannot ameliorate with age, so anyone showing signs of amelioration is "borderline" or has been let in by sub-standard diagnosis?

Another problem with the private route is the fact that poor people, or even people who are simply on relatively low incomes, will not be able to afford it. I am against private practice because of my core belief in equality of provision. The fact is, well-off folks are able to use their muscle to get their voice heard, while those with less spending power (who are often the most vulnerable) get side-tracked.

I think that doctors are genuinely becoming more aware of AS, and this is surely a good thing. THerefore, more people are getting the help and support they need - which can only be welcomed. However, there are problems with the private diagnosis route, and surely the Autism Act should force the NHS to offer assessment to those who need it, because if  professionals  do not, they will be breaking the law.

Could you enlarge on your evidence for a, b and c?

Adult diagnosis has only really been available at all within the last ten to fifteen years, and as you say True Colours it is not easy for adults to get a diagnosis and still impossible in some parts of the county.

I'm concerned though that you appear, at least from evidences a, b and c to be saying that adults have missed the boat and diagnosis is only relevant in childhood. I'm really quite puzzled by (a) that adults should not be included in the spectrum - this resembles my GP's opposition to my getting a diagnosis on the grounds it only affects children and an adult looking for a diagnosis must be delusional.

I was born in 1950, so my teens were in the swinging sixties. Those that showed obvious signs were taken out of education as showing early signs of schizophrenia, as for a long time asperger behaviours were confused with that. I was lucky in that my parents, having medical backgrounds, fought against school interventions, because I suffered acute bullying (partly because my peers found it easy to trigger explosive reactions, because I react to close noise and movement), and because I was solitary, daydreaming and lacked friends.

In the 70s and 80s you were likely to be put on very inappropriate medications.

Yet even now many people with surprisingly obvious traits aren't being diagnosed until late teens or early twenties.

It would be most regrettable if it were argued that because aspergers has mostly been addressed in schools within the last thirty years, anyone over 40 has really missed the boat. But because NHS diagnoses are hard to get many people are being drawn towards private and self-diagnosis.

Granted care is needed. But I do not see any advantage to getting a diagnosis unless you really warrant it, so I don't have quite the same concern as you express about letting people in by claiming (b) that professional diagnosis isn't thorough enough.

People who didn't get diagnosed young have often lived dreadful lives, and here we get this "private club" attitude, oh we're letting too many in, standards are dropping, etc. Please be more sympathetic (ok we are supposed to lack empathy but that is a grey area).

It's not easy in the UK for adults to obtain a diagnosis - in fact in some areas it's impossible.  The alternative is to go privately but this option isn't open to everyone and as Longman says it's possible that people who self-diagnose will get things moving - but that's all it will do.  To have AS included on medical records or be eligible for financial help an official diagnosis is necessary.

The truth is that at the present time there is a certain hostility towards adult diagnosis based on:

(a) a belief that they should not actually be included on the spectrum, that the parameters for judging AS have been widened too much.

(b) that diagnosing of adults isn't thorough enough.  However, when dealing with people over (say) 40 years of ago it may be impossible to access school reports, parents may be dead and people who one knew when young no longer be around.  

(c) that diagnoses acquired privately are not up to the standards of those by NHS professionals and/or they are supplied by people just out to make money.

My point is that those self-diagnosing may get things moving. You may find that bizarre. It is often the way of things.

Although you have found an organisation that appears to be helping people who self diagnose, I doubt if those self diagnosing will be able to claim DSA or income support. I suspect it will be an indulgence by those who can afford it.

Hence I don't think they will detract from existing services. But their apparent eagerness to make a case may bring new money into play.

Although parents' groups exert considerable influence, people on the spectrum have difficulties making their case heard. Too many have low income or are dependent on support. Charitable advocacy has a hard shout.

The involvement of such parties, however dubious as you may perceive them may bring benefits. It could also create risks, such as the widening of interim diagnoses such as PD-NOS, with associated loss of support.

But some major dynamic is needed to get AS/Aspergers into full focus.

I totally agree Shek with all your points. I have the same concerns myself.

Asperger's syndrome is a unique condition on the autism spectrum that is very different to other forms of autism-the individual is verbal and of normal intelligence-but at the same time AS shares with other autistic conditions a significant impairment in social relatedness.

When I got diagnosed I wanted it to be done properly and in depth. I wanted them to give me a correct diagnosis.  They looked at my school reports and statement of SEN, and my parents told them about my early years and the little things such as tip-toe walking and clumsiness, as well as the more significant issues like friendship difficulties and getting into trouble. I was seen on 4 separate occasions and each lasted half a day. 

Self-diagnosis  can be wrong and I am always sceptical when people say they have self-diagnosed.

Judging from what is said on some internet forums, many of those who self-diagnose who go on to be given an assessment are NOT given a diagnosis of autism.  Some are diagnosed as having other conditions, or nothing at all.  Some accept this, others don't and are determined to get a second opinion.

An adult assessment, done properly, is pretty thorough.  Old medical records, school reports, interviews with close family members, together with questionnaires, are used to build up a developmental picture of a persons life.  It is also necessary to have 'significant impairment' to receive a diagnosis.

I really don't see how people who don't have a diagnosis, and who may never have one because they don't meet the criterea, can assist in getting money for services/research by claiming they are autistic.  Surely the opposite is true? 

How will it increase the general population's understanding of autism if people who are not autistic claim that they are? 

There are huge cuts being made in public services.  Surely funders will think twice about funding services for adults with autism if services are being used by people without a diagnosis? 

There have been stories around about self diagnosis for years. The British way of doing things is "trickle-down" - the rich indulge and the money they spend benefits us eventually. There might be some benefits to this kind of thing.

It may create a group of people who are willing to invest more money.  It may trigger more research. It will not necessarily put any strain on what resources are there currently but might raise the profile.

Actual diagnosis is based on a clinician assessing people's self identification, via tests, evidence and corroboration which is itself largely circumstantial. It isn't that scientific. The increase of self diagnosis might open up debate.