How should I go about being tested for Aspergers?

[Tingers]

Hi everyone

 

As you may notice this is my first post on the forum; the reason I signed up is because I suspect I might have Aspergers and would like to talk to other people who might know more about it than I do. There are many things I have noticed through reading books, articles, watching videos, doing online tests and speaking to friends who have Aspergers. The more I learn, the more likely it seems to be. But, I don't want to be self-diagnosed. I'd really just like to know for certain either way. So, what are your experiences in diagnosis? Does anyone have any suggestions for how I might be able to broach the subject with my doctor? Is that in fact, what I ought to do? Would a doctor refer me straight to a psychiatrist or would I have to go through counselling and jump through a load of NHS hoops first (I don't want to!) I'm female and 28 years old.

 

Also, I'm a little scared about what might happen if I do get a diagnosis. I'm worried it will change me somehow (for the worse). I'm not sure whether I'd tell people and am worried about how people might treat me differently if I had a label such as 'Aspie'. Does anyone have any experiences to share?

 

Thanks in advance...

Edited July 25, 2010 by Tingers

[Tally]

Hi Tingers, and welcome to the forum.

 

I am also 28 and female. I was diagnosed with Asperger's 3 years ago after suspecting for several years.

 

Getting a diagnosis for an adult is really difficult. Your GP is unlikely to refer you directly to someone who can diagnose you. It's quite common to be seen by the mental health team. It's actually quite important to rule out mental health issues - or at least to rule them out as the cause of all your difficulties, since it's possible to have additional mental health difficulties with Asperger's. You do need to begin with your GP. It would be a good idea to go armed with a short list of key reasons why you believe you may have Asperger's. The NAS produce a leaflet on Asperger's, and you could highlight the issues that are particularly relevant to you.

 

I know that some people do get diagnosed on the NHS, but it is never easy and there will be hoops to jump through. I simply reached a dead end, which is why I was dignosed privately.

 

A diagnosis should not change your personality, as it only applies a label to aspects of you that already exist. Many people do go through a period of adjustment, and for some people that does mean starting to feel that you can't cope in certain situations because you've learned that people with Asperger's struggle with it. For most people though, it is a phase and is part of getting to know yourself better and understand your skills and difficulties. You have to think about what you could and couldn't do before diagnosis and ask yourself why your abilities would change.

 

As for whether you tell people, that's a difficult one. There's certainly no need to if you choose not to. There are very few professions where you need to declare your medical history, but if you feel you would need adaptations in order to cope in the workplace, then you do need to declare your disability from application stage - obviously not if you are already in employment when you get diagnosed, in that situation it would be up to you to decide whether you feel it would be necessary or helful. With people you are close to, it can be helpful for them to understand you and the way you relate to them, and can help you and other people to meet halfway in your relationships with them (it's not all about other people changing to suit your needs).

[Tingers]

Getting a diagnosis for an adult is really difficult. Your GP is unlikely to refer you directly to someone who can diagnose you. It's quite common to be seen by the mental health team. It's actually quite important to rule out mental health issues - or at least to rule them out as the cause of all your difficulties, since it's possible to have additional mental health difficulties with Asperger's. You do need to begin with your GP. It would be a good idea to go armed with a short list of key reasons why you believe you may have Asperger's. The NAS produce a leaflet on Asperger's, and you could highlight the issues that are particularly relevant to you.

 

I know that some people do get diagnosed on the NHS, but it is never easy and there will be hoops to jump through. I simply reached a dead end, which is why I was dignosed privately.

Hi Tally

 

Thanks for your reply. It doesn't fill me with confidence though. The NHS' procedures are so flawed and long-winded. I find they can often cause more problems than they create. In fact, even thinking about the NHS is making me quite angry now! For example, I had various digestive problems for a few years and still have not been told why, despite having seen various practitioners, having several tests and subsequently been very paranoid and worried about my health for a long time. The NHS seem to view its patients as the problems and illnesses that patient may have, rather than taking a holistic view and trying to see the patient as a person, whose mind and body are parts of the same thing.

 

Dear me. Only my second post and I'm ranting!

 

As for going privately, how did things work? Did you go straight to a psychiatrist? Did you seek out an expert in Aspergers? And were there still 'hoops' to jumps through?

Edited July 25, 2010 by Tingers

[Tally]

Hi Tingers,

 

I can see where you are coming from with the rant! I have not been overly enamoured with the NHS either. I am trying to get help for digestive problems at the moment too, and the conclusion is that I am hallucinating them

 

I know there are adults on this forum who have been diagnosed on the NHS, so perhaps my experiences have been unusually bad ones. I do have a mental health history which clouds things. I also come across much better in 1:1 situations like doctor appointments than I do in most aspects of real life, which I think makes it difficult for them to recognise the extent of my difficulties.

 

When I started looking for a private diagnostician, I approached them direct. The first one I approached asked for a referral from my GP, who happily wrote to them. Unfortunately they replied saying they were so oversubscribed they could not see anyone from out of area, even privately. The second one I approached was happy to see me without any referral. She was concerned about seeing me because she was outside of my area and unable to provide ongoing support, but I argued that I could not access diagnosis in my area, so had no choice but to look outside of my area, and that a diagnosis could entitle me to local support. She did not even send the write-up to my GP; I photocopied it and handed it in myself. She also works for the NHS and my assessment was exactly the same as I would have received if I could have got the NHS to pay for it.

 

The NAS have a database somewhere listing professionals qualified to assess adults. That was where I found mine.

[Tingers]

Thank you. That IS useful to know. I only hope other people in different areas have had more success than did you - then maybe there is a hope for me too!

 

My incredibly intelligent friend (who happenes to have Aspergers) told me that digestive problems in peopel with Aspergers are very common. I have not yet had chance to read up and find out more, but I wonder, have you looked into that? Perhaps people with Aspergers somatize feelings they do not understand: so an emotional problems can manifest itself physically?

[trekster]

Hello

 

Im in my 30s and was diagnosed when i was age 16. i was relieved to know why i thought how i did and also that others felt the same as me.

Some of my best friends are autistic/asperger and ive a few friends on here.

 

Have you tried contacting http://www.autismwestmidlands.org.uk/

 

http://www.autism.org.uk/About-autism/All-...for-adults.aspx

 

....is the page by the NAS for getting a diagnosis as an adult. There is a NAS social group for adults in Birmingham but an asperger

friend of mine had trouble contacting them so it could be cancelled. Self diagnosed people can sometimes attend and a few of my

self diagnosed friends have been attempting to get diagnosed at my local social group.

 

Good luck

[trekster]

Hi Tally

 

Thanks for your reply. It doesn't fill me with confidence though. The NHS' procedures are so flawed and long-winded. I find they can often cause more problems than they create. In fact, even thinking about the NHS is making me quite angry now! For example, I had various digestive problems for a few years and still have not been told why, despite having seen various practitioners, having several tests and subsequently been very paranoid and worried about my health for a long time. The NHS seem to view its patients as the problems and illnesses that patient may have, rather than taking a holistic view and trying to see the patient as a person, whose mind and body are parts of the same thing.

 

Could it be IBS or a food intolerance?

 

[trekster]

Thank you. That IS useful to know. I only hope other people in different areas have had more success than did you - then maybe there is a hope for me too!

 

My incredibly intelligent friend (who happenes to have Aspergers) told me that digestive problems in peopel with Aspergers are very common. I have not yet had chance to read up and find out more, but I wonder, have you looked into that? Perhaps people with Aspergers somatize feelings they do not understand: so an emotional problems can manifest itself physically?

 

Yes they can be common, celiacs, IBS and other digestive issues seem to co-occur with aspergers. i happen to be addicted to gluten (and used to be addicted to milk) so have to avoid them at all costs.

[Tingers]

Yes they can be common, celiacs, IBS and other digestive issues seem to co-occur with aspergers. i happen to be addicted to gluten (and used to be addicted to milk) so have to avoid them at all costs.

Addicted to gluten? Interesting... I've never heard anyone speak of an addiction to gluten (apart from people joking that they always crave unhealthy food) I know people can have a sensitivity, perhaps or even an intolerance: can a food addiction be diagnosed or do you just recognise that with some foods, once you start, you can't stop? Sometimes I crave gluten and sugar too but I know both are very bad for me in large doses. Still, if I get into the habit of eating certain types of food (particularly ones that give me IBS symptoms) I tend to want to eat more of them.

 

As for Aspergers, I'm still wondering what the benefits of being diagnosed would be. Firstly, I feel like some sort of fraudster claiming to have the condition when there's a chance I might not have. I don't want other people with AS to feel like I'm making light of their difficulties, or somehow jumping on the bandwagon in order to connect with people or make friends. On the other hand, if getting a diagnosis through the NHS is so difficult, I imagine I'd be putting myself through quite a lot of emotion and trauma having to explain everything to various practitioners. I like to think I've found coping strategies for many of my Aspergers traits and only occasionally do I struggle. Anyone have anything to say on WHY a diagnosis for someone my age (28) who functions reasonably well, might be worthwhile?

Edited July 25, 2010 by Tingers

[zenemu]

As for Aspergers, I'm still wondering what the benefits of being diagnosed would be. Firstly, I feel like some sort of fraudster claiming to have the condition when there's a chance I might not have. I don't want other people with AS to feel like I'm making light of their difficulties, or somehow jumping on the bandwagon in order to connect with people or make friends. On the other hand, if getting a diagnosis through the NHS is so difficult, I imagine I'd be putting myself through quite a lot of emotion and trauma having to explain everything to various practitioners. I like to think I've found coping strategies for many of my Aspergers traits and only occasionally do I struggle. Anyone have anything to say on WHY a diagnosis for someone my age (28) who functions reasonably well, might be worthwhile?

 

Hi Tingers,

 

Firstly Welcome to the forum

 

There are a lot of positives to getting a diagnosis, for example: you may be able to receive extra support in some area's you need, you might be able to get some reasonable adjustments at work too, but perhaps more importantly it may give you the confidence to openly broach the condition with friends and family and it may help them to understand you a little better. Some people also find it very beneficial to just have the confirmation that the problems you are experiencing have a reason behind them.

 

Of course as with anything there are downsides too. Some people will simply refuse to acknowledge the problem, potential employers may sometimes indirectly discriminate against you if you inform them and being a very new diagnosis (AS was only medically recognised around 1993/4), many people will not have heard of it and will be quite wary around you not knowing what to expect. Some people have also have preconceived ideas about autism in general which are not always helpful and often a little insulting or even offensive.

 

Many people have the diagnosis and never mention it to anyone apart from a few close friends; others share it openly with employers & colleagues. Some people are simply self diagnosed (often correctly) and are satisfied with that too. In the end it is entirely your choice and you need to do whatever you feel you will be comfortable with.

 

[Pedgeth]

Hi everyone

...

Thanks in advance...

Tingers, Your story sounds exactly like what I'm going through. Have you made any progress? It'd be brilliant to hear good news from you.

[macgumerait]

Although Ive had a quite negative experience, being diagnosed of aspergers would be better than sitting, always wondering. Services may be improved down your way as opposed to up here.

 

The waiting list is horrendous, however, the sooner you were to seek an assessment, the nearer you may come to a formal diagnosis, which will open up new doors for you.

 

What type of assistance would you like, if you were to be diagnosed formally?

 

<!--quoteo(post=292474:date=Jul 25 2010, 01:59 PM:name=Tingers)--><div class='quotetop'>QUOTE (Tingers @ Jul 25 2010, 01:59 PM) <a href="index.php?act=findpost&pid=292474"><{POST_SNAPBACK}></a></div><div class='quotemain'><!--quotec-->Hi Tally

 

Thanks for your reply. It doesn't fill me with confidence though. <img src="http://www.asd-forum.org.uk/forum/public/style_emoticons/<#EMO_DIR#>/sad.gif" style="vertical-align:middle" emoid="" border="0" alt="sad.gif" /> The NHS' procedures are so flawed and long-winded. I find they can often cause more problems than they create. In fact, even thinking about the NHS is making me quite angry now! For example, I had various digestive problems for a few years and still have not been told why, despite having seen various practitioners, having several tests and subsequently been very paranoid and worried about my health for a long time. The NHS seem to view its patients as the problems and illnesses that patient may have, rather than taking a holistic view and trying to see the patient as a person, whose mind and body are parts of the same thing.<!--QuoteEnd--></div><!--QuoteEEnd-->

 

Could it be IBS or a food intolerance?

[trekster]

<!--quoteo(post=292491:date=Jul 25 2010, 05:54 PM:name=trekster)--><div class='quotetop'>QUOTE (trekster @ Jul 25 2010, 05:54 PM) <a href="index.php?act=findpost&pid=292491"><{POST_SNAPBACK}></a></div><div class='quotemain'><!--quotec-->Yes they can be common, celiacs, IBS and other digestive issues seem to co-occur with aspergers. i happen to be addicted to gluten (and used to be addicted to milk) so have to avoid them at all costs.<!--QuoteEnd--></div><!--QuoteEEnd-->

Addicted to gluten? Interesting... I've never heard anyone speak of an addiction to gluten (apart from people joking that they always crave unhealthy food) I know people can have a sensitivity, perhaps or even an intolerance: can a food addiction be diagnosed or do you just recognise that with some foods, once you start, you can't stop? Sometimes I crave gluten and sugar too but I know both are very bad for me in large doses. Still, if I get into the habit of eating certain types of food (particularly ones that give me IBS symptoms) I tend to want to eat more of them.

 

As for Aspergers, I'm still wondering what the benefits of being diagnosed would be. Firstly, I feel like some sort of fraudster claiming to have the condition when there's a chance I might not have. I don't want other people with AS to feel like I'm making light of their difficulties, or somehow jumping on the bandwagon in order to connect with people or make friends. On the other hand, if getting a diagnosis through the NHS is so difficult, I imagine I'd be putting myself through quite a lot of emotion and trauma having to explain everything to various practitioners. I like to think I've found coping strategies for many of my Aspergers traits and only occasionally do I struggle. Anyone have anything to say on WHY a diagnosis for someone my age (28) who functions reasonably well, might be worthwhile?

 

Im addicted to gluten because my body cannot digest it properly. My brain literally treats gluten and milk as though it were a drug. It took me over 8 years to finally accept i couldn't go on like this being depressed, snappy, suicidal and a recluse. i didnt realise i was addicted to gluten and milk until i went completely off them. i craved foods that contained lactose, remembered my meds (because they contained lactose) and was ill after eating malt vinegar (which i didnt know was gluten at the time).

 

quoting from the NAS website on diagnosis for adults, http://www.autism.org.uk/About-autism/All-about-diagnosis/Diagnosis-the-process-for-adults.aspx

There are 4 pages in this section.

 

"....A firm diagnosis can be a relief because it allows them to learn about their condition and understand where and why they have difficulties for the first time....Gaining the understanding of others

 

Many people suffer the consequences of being constantly misunderstood. Often the fact that someone has AS can lead to teasing, bullying and social isolation. When the people close to you are able to understand that there is a reason for your difficulties it is much easier for them to empathise with your position................Gaining a diagnosis can be difficult and very few adults find it easy. You are the only person who can decide if this is the best choice for you."

 

"a user guide to the gf/cf diet for aspergers/autism and adhd" is a recommended start if you wish to try this lifestyle. Also there's a section on interventions on this site. It makes sense that despite IBS symptoms you would still like to eat foods that are causing you harm due to addiction.

Personally the only test to see if you are gluten, milk addicted is to go off the substances and see what happens. PM me if you need guidance during this process.

[trekster]

Although Ive had a quite negative experience, being diagnosed of aspergers would be better than sitting, always wondering. Services may be improved down your way as opposed to up here.

 

The waiting list is horrendous, however, the sooner you were to seek an assessment, the nearer you may come to a formal diagnosis, which will open up new doors for you.

 

What type of assistance would you like, if you were to be diagnosed formally

 

Macgumerait have you heard of the NAS in scotland?

 

http://www.autism.org.uk/our-services/get-help-in-your-area/get-help-in-scotland/branches-in-scotland.aspx

 

http://www.autism.org.uk/our-services/get-help-in-your-area/get-help-in-scotland/get-help-from-starthere-in-scotland.aspx

 

http://www.autism.org.uk/our-services/get-help-in-your-area/get-help-in-scotland/regional-teams-in-scotland.aspx

 

There are also a few autism resource centres in Scotland.....

 

http://www.autism.org.uk/directory/search-results/pg=1.aspx

 

....and some adult social groups.

 

* Glasgow under-30's (2 Groups)

* Glasgow over-30's

* Clydebank/West Dunbartonshire

* Edinburgh

* Dundee.

[coolblue]

Thank you. That IS useful to know. I only hope other people in different areas have had more success than did you - then maybe there is a hope for me too!

 

My incredibly intelligent friend (who happenes to have Aspergers) told me that digestive problems in peopel with Aspergers are very common. I have not yet had chance to read up and find out more, but I wonder, have you looked into that? Perhaps people with Aspergers somatize feelings they do not understand: so an emotional problems can manifest itself physically?

 

 

Hi Tingers and welcome.

 

You've had some excellent advice and I hope it's helped with the way forward.

 

I have a 12-year old with AS and because of the diagnostic problems involved I developed a bee in my bonnet about it. I just wanted to comment on the relationship between diagnosis, AS and digestive problems.

 

Autistic spectrum disorders, including AS, are 'diagnosed' in the sense that a cluster of symptoms matches the clusters of symptoms shown by other people, and is given a label. In most cases we don't know what causes those symptoms, so it's not a diagnosis in the sense of diagnosing measles, where we can actually identify the specific virus that causes the illness.

 

It's as if patients complaining of a fever, sore throat and skin rash were being diagnosed as suffering from Blenkinsopp's syndrome (not a real syndrome) - the symptoms of which are a fever, sore throat and skin rash. Of course, we worked out many of the different causes of these symptoms long ago, so any doctor lumping together all their patients with these symptoms as having the same condition these days would be thought eccentric to put it mildly.

 

So although there is little doubt that people with significant impairments in social interaction and communication and showing restricted or repetitive behaviours have characteristics in common, and that those characteristics have organic causes, it doesn't mean that they all have the same cause for their symptoms. The label applies to the symptoms, not the cause.

 

So although people with AS often have issues with emotion (they might not be able to read it or express it as well as others) it isn't necessarily an impairment in emotional understanding or expression that's causing their symptoms. That would be a bit like saying this person's fever, sore throat and skin rash is caused by them having a fever, sore throat and skin rash.

 

What research appears to be homing in on, is that the symptoms of ASDs are caused by a genetic predisposition, coupled sometimes with an environmental trigger. Abnormalities of neurotransmitters are a likely candidate in many cases. So what's most likely is that the characteristics of AS and co-occurring digestive problems are both caused by the same physiological issues. Serotonin is one possibility, since it is involved in a wide range of physiological processes including mood, sleep, homeostasis, and the functioning of the gut. In short, genetic factors lead to physiological factors which in turn affect social interaction, communication and digestion. The physiology of neurotransmitters is very complex, which is why research is still a work in progress.

 

I think a diagnosis, even if it's just a label for symptoms, can be very useful because it means that a medical professional has said; this person has a physical condition which causes them to behave in certain ways. They are not simply being eccentric, awkward or difficult.

 

Hope this helps.

 

cb

[trekster]

Cool blue thanks for your insightful and informative comments.