Bringing It Up With Your Doctor

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Despite being very articulate and usually having no trouble expressing myself, I am worried that when I decide I'm feeling brave enough to book that appointment, my doctor will be treated to a verbal eruption along the lines of;

'Hello, now I'm sorry that I might be wasting your time, I'm sorry, I'm sorry, I'm sorry, I'm sorry, I'm sorry, I'm sorry, I'm sorry, I'm sorry, I'm sorry but I think I might have Aspergers.'

Basically, the combination of my 'sorry' tic, my distrust of health professionals, and my paranoia that I'm getting in the way of some poor old lady getting her cancer diagnosed, is likely to result in me not being able to put across what I want to say. I think I may have to be quite pushy to get myself referred to a psychologist and I don't think I'll feel able to.

Does anybody have any hints and tips?

Also, I know not everybody has all Aspergers traits, such is the nature of the thing, but does anybody know which ones you HAVE to have to be diagnosed?

Thankyou for your help.

Why bother getting a diagnosis? As far as I am aware there is no cure.

I have suspected that I have Asperger's for years, but only recently went to my Doctor for stress and anxiety that I think may be related to Asperger's. I did not mention Asperger's to him at all. I didn't see any point. He is the Doctor, not I. He referred me for couselling, but I haven't had an appointment yet.

Unless you have any treatable symptoms I wouldn't bother trying to get an official diagnosis. It's such a rare condition that you are probably unlikely to get one. However, I would point out that I have no medical, psychological or psychiatric knowledge, and little experience or knowledge of AS other than from the internet.

I actually discussed it with my doctor, and brought along a copy of the DSM-IV I had printed from the Internet. My doctor gave me an address of a person who specialized in AS, but I never made an appointment. The suspicion is different from the confirmation. I am not so much afraid of the diagnosis, but of having my options limited. I would rather work on myself first, trying to reach my goals, before seeking a diagnosis.

In response to 'Why bother getting a diagnosis'.

I have very bad meltdowns which cause me a lot of trouble at work. I've been told that I can't cope, that I can't handle pressure. I think if I was diagnosed I might get a little bit more understanding.

So you do indeed have treatable symptoms for which you must go to your Doctor. You are going to him/her because of your meltdowns and inability to cope, not because you think you have AS. Your Doctor may well not know what AS is.

I suspect that he/she may in the first instance prescribe beta-blockers or anti-anxiety drugs, or refer you to a counsellor, depending on your particular symptoms. It's no big deal and nothing to be worried about.

I've gone through this recently. I'd just registered with a new GP and the first appointment I had with him, I brought up AS. He was very dismissive of the suggestion but I think that not knowing me played a part in this. However, from the way he spoke of Aspergers, it became clear to me very quickly that his knowledge of the condition was very poor.

Previous to my appoiontment with him, I had contacted the National Autistic Society for advice on how to go about a diagnosis. They explained that many Health professionals are very ill-informed about Aspergers and as a result, lots of people are failing to get properly diagnosed. This is especally true for adults. Copied below in its entireity is their advice on how to broach the subject with your doctor.

I tried to do this but I had problems as I was 'thown off-track' by the doctor's interruptions and didn't get to say everything that I intended to say. I then asked the doctor for a referral to the hospital that the NAS had recommended to me, but he refused. He said that 'that's not what WE do here' and told me that he would have me assesed by a team of psychiatrists that visit the health centre. No mention if any of them were even qualified to give a dx for Aspergers! (turns out they weren't!).

I was very unhappy with this and rang the NAS back. After explaining the situation, they said that they would send me a letter to give to my doctor that explains my reasons for wanting the diagnosis that I requested and also explains my communication and sensory issues. Not long after I handed the letter to my GP, I got the referal to a proper AS expert. I'm due to go for my diagnosis in the next 2 weeks. The diagnostic centre sent me a copy of the Autistic Quotintent test for me to fill in and return as they said that this will help to determine what proceedure they will follow for the diagnosis.

Here's the NAS article. I hope this helps you!

Diagnosis of autistic spectrum disorders in adults
The Autism Helpline frequently receives calls from adults who suspect they may have Asperger syndrome (AS) or High-Functioning Autism (HFA) and are looking for a diagnosis. In this article the term Asperger syndrome is used to include all forms of high-functioning autism.

Gaining a diagnosis as an adult isn't easy, especially as Asperger syndrome isn't widely heard of among GPs. The typical route for getting diagnosed is to visit your GP and ask for a referral to a psychiatrist or clinical psychologist, preferably one with experience of diagnosing autism. If you are already seeing a specialist for other reasons, for example, a psychologist because you suffer from depression, then you might wish to ask them about a referral instead.

It can be very hard to convince your doctor that a diagnosis would be either relevant or necessary. The following are just some tips on how to present your case so that they can see both why you might have AS and why having a diagnosis could be helpful.

Ways to bring up the subject with your doctor

Make sure the diagnosis is the only thing you are seeing your doctor about. If you try and drop it into a consultation about another subject they may not address it fully. A good way to bring up the subject is to mention that you have been reading about autism/Asperger syndrome and/or you have been in touch with The National Autistic Society.


Describing the triad of impairments

You should then explain why this is relevant to you. AS is characterised by something known as the triad of impairments. People with AS will be affected in some way by each of these impairments. I have given some suggestions below for ways in which you could describe how the triad of impairments relate to you. The autistic spectrum is very broad and two people with the condition may present very differently. No one person will have all the traits but by and large most people with AS will have problems in the following three areas:


Social communication

People with AS may be very good at basic communication and letting people know what they think and feel. Their difficulties lie in the social aspects of communication. For example:

they may have difficulty understanding gestures, body language and facial expressions
they may not be aware of what is socially appropriate and have difficulty choosing topics to talk about
they may not be socially motivated because they find communication difficult, so they may not have many friends and they may choose not to socialise very much.
Some of these problems can be seen in the way people with AS present themselves. for example classic traits include:

difficulty making eye contact
repetitive speech
difficulties expressing themselves especially when talking about emotions
anxiety in social situations and resultant nervous tics.

Social understanding

Typical examples of difficulties with social understanding include:

difficulties in group situations, such as going to the pub with a group of friends
finding small talk and chatting very difficult
problems understanding double meanings, for example not knowing when people are teasing you
not choosing appropriate topics to talk about
taking what people say very literally.
You might want to back this up with specific examples of the kind of social situations you find difficult.

Imagination

This can be a slightly confusing term. People often assume it means that people with AS are not imaginative in the conventional use of the word, for example, they lack creative abilities. This is not the case and many people with AS are extremely able writers, artists and musicians. Instead lack of imagination in AS can include difficulty imagining alternative outcomes and finding it hard to predict what will happen next. This frequently leads to anxiety. This can present as:

an obsession with rigid routines and severe distress if routines are disrupted
problems with making plans for the future, and having difficulties organising your life
problems with sequencing tasks, so that preparing to go out can be difficult because you can't always remember what to take with you.
Some people with AS over-compensate for this by being extremely meticulous in their planning, and having extensive written or mental checklists.


Secondary traits of Asperger syndrome

Besides the triad of impairments, people with AS tend to have difficulties which relate to the triad but are not included within it. These can include:

obsessive compulsive behaviours, often severe enough to be diagnosed as obsessive compulsive disorder (OCD);
these can also be linked to obsessive interests in just one topic, for example they might have one subject about which they are extremely knowledgeable which they want to talk about with everyone they meet;
phobias: sometimes people with AS are described as having a social phobia but they may also be affected by other common fears such as claustrophobia and agoraphobia;
acute anxiety, which can lead to panic attacks and a rigid following of routines;
depression and social isolation: this is especially common among adults;
clumsiness often linked to a condition known as dyspraxia. This includes difficulties with fine motor co-ordination such as difficulties writing neatly as well as problems with gross motor co-ordination such as ungainly movements, tripping, falling a lot and sometimes appearing drunk as a result.
Not having these associated problems does not mean you do not have AS, but if you have any of them you might want to describe it in order to back up your case.


To conclude

You don't need to go and describe every single one of these features. Your doctor may be more likely to respond if you give one good example from each area of the triad. Once you have explained why you think you have AS to the doctor you could also show them this webpage or pass on a copy of the NAS document 'Diagnosis information for health professionals'.


What if the doctor disagrees?

If your doctor disagrees with your argument, ask for the reason why. If you don't feel comfortable discussing their decision then and there you can ask for a second appointment to talk it through.


Reasons why you might need a diagnosis

Diagnosis in adulthood can be a mixed blessing. Some people decide that they are happy with self diagnosis and decide not to ask for a formal diagnosis; for those that do there are a variety of benefits:


Understanding yourself

Many of the people we speak to have suffered from mental health problems and/or have been misdiagnosed as having mental health problems such as schizophrenia. They have known that they have specific difficulties for a long time without being able to explain them. 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.


Receiving services appropriate to their needs

Adults with AS may need support with day to day living (this is only the case for some people and many others have no support needs). If they are having these needs met it may be by people who do not understand Asperger syndrome and the specific difficulties associated with it. With a diagnosis, you can access autism-specific services such as the Prospects employment consultancy, run by The National Autistic Society.


Joining the AS community

It can be helpful to meet up with other people who have the condition in order to learn about their experiences and share your own. There are some support groups available for this and the NAS also supports a group called Asperger United who publish a newsletter written by people with AS for people with AS. Another good way of contacting people with AS is through the internet and you can find out more about useful websites on our links page. You do not have to have a diagnosis of AS in order to access this support.

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.

If you require further information please contact the NAS Autism Helpline (tel: 0845 070 4004; email: [email protected]).

i remember when i had my hernia surgury the doctor had to know of all my mental disorders and i just told him i had aspergers and he was all "no problem". just dont think about it. it will be alot easier when you finally do have to tell them

I'm not sure if I want to take any drugs for it. All I want is the reassurance that when I do meltdown I'm not going to lose another job.
Several times after particularly bad episodes I've been told by school, and later by my employers, that I have to see a doctor. All bar one of these times my doctor has told me I don't have the symptoms of clinical depression, that I'm attention seeking, and sent me home. (The other time I was referred to a psychologist who was convinced my self harm was due to some repressed memories and interrogated my mother, trying to get her to "admit" that I'd been abused as a child).
Surely any doctor worth their salt would want to know the underlying reasons for any problem rather than just treating the symptoms? Given that I now think I know what the underlying reason is, it surely makes sense for me to bring that up so that I might receive appropriate treatment? Especially since I have seen before what happens when those reasons are not understood?

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to autodidact,

That was more helpful than you can imagine, so thankyou. It was especially useful to have the 'lack of imagination' explained so succinctly. I think I will probably write down what I think my symptoms are and why I want the diagnosis in advance, so that I'm clearer in my head.

No problem Sarah,

Good luck with getting the diagnosis!

I can relate to your frustration with doctors, difficulty talking to them. I have a diagnosis but still have difficulty with them. I'm having a run-in with a GP I don't even use anymore when he replied out of the blue about a letter I had sent him *5 months* before and had gone missing, spent a time chasing, as if nothing had happened. I had changed because of him sitting on his hands and was already diagnosed with the help of another GP. He made assumptions about how his colleague would handle it based on his total lack of knowledge on Pervasive Developmental Disorders and mental health, which was totally contrary to what actually happened. I wrote back explaining the pointless of his letter and not to make assumptions about my treatment and for him to stick to what he knows best. He just sent another pointless letter. He insinuated that I had handed in the letter pre-dated recently (as if), but otherwise he would apologise. Talk about back-handed. He went on to say he would not comment on the ‘inappropriateness’ of my letter because he understood I was making good progress with my current GP (another assumption).

Best advice I can give:

# Write things down and hand it to them. That is what I did, still do. If they refuse to read it, don't waste time with them, just walk out. Explain that you find it hard dealing with health professionals.

# The best people to get referred by are GPs that are also paediatricians. It may seem odd going as an adult but they have actually got more experience of PDDs, so you will more likely get a referral. If there is one at your clinic use them.
Standard GPs on the whole have poor training on any matters to with the PDDs (and mental health). We are in the dark ages in the UK for diagnosis/treatment of Neurodevelopmental conditions in adults, even some of the drugs for ADHD are not licensed for adults yet although this is ignored for the most part.

# I was formally diagnosed by a combination of a physician and a clinical psychologist at a centre but it was my old psychologist that first mentioned Asperger’s to me. I think she hinted it six months before tell me she explicitly but I was a bit angry then so she left it. It is fairly common to have mental health problems as the result of living in the world with ASD. Not every shrink is good, but they are generally more interested in PDDs. Many clinical psychologists are able to give diagnosis as well as psychiatrists.

# In NHS you may need to apply for the funding. Especially if you need more than just ‘yes you are’ type of diagnosis, therefore need to go to a specialist hospital/centre such as the Maudsley. This is a pain. You need to be referred to a psychiatrist who works for the local health trust. This person can’t even give you the final go ahead, they have to apply centrally for the funding. They may expect to see you for 2 sessions and are not working as a normal clinician in this guise (£££). This guy actively admitted he knew nothing about any of the stuff I handed him. I gave him stuff on ADHD including a questionnaire, and just some text on ASD. He wanted a paper test for ASD as well, so asked me to bring it for the second session. When I asked, which one he just said ‘any’. I was surprised by this, I think I was just lucky he knew his limitations and wasn’t a total bastard. I’m still waiting for the actual referral to go through.

Or tranquilisers... Make sure you get a proper referral instead of taking quick fixes from GPs. Not all GPs play by the rules, they are under pressure to turn over patients. A GP is being disciplined for trying to perform an exorcism on a woman seeking contraceptive advice and complaining of bleeding and swelling. It doesn’t all come under general practice

But the treatment for many comorbid disorders is very different when the person also has AS. I don't know if that applies to anxiety (I would think it does), but for example, my husband's doctor sent him to a different kind of OCD therapist because of his AS. The standard treatment that most people would get for OCD would involve drugs and trying to find the underlying cause of the compulsions. However, due to suspected AS he was instead referred for a treatment that involves seeing the precursors to the compulsions and channeling them into something else, no drugs, no talk therapy.

I think that going to the doctor and telling him/her you have anxiety and not mentioning AS is like going to the doctor and telling him/her you're having chest pains and not mentioning that both your parents died of a heart attack at a young age. You're intentionally omitting information that could be crucial to the diagnosis and treatment of your problem.

This is a really useful thread, I think.

Sarah, my experience if you get flustered is probably the best thing to do is write down a list, as has already been suggested. It might be helpful if you can use this as the basis of the conversation, a "checklist" if you will of points you want to cover (I find that without a list, I'll miss things I want to say to my doctor, and not just about AS, other things, too. I've gotten out of the habit, I need to start doing it again.), or you can just try to write something and hand it to your doctor. If you're not happy with your GP, if they don't take you seriously, then find another. I know that's less common in the UK than in the US, but really, who wants to have a doctor who doesn't listen to them?

Quite simply, because many psychological problems have to be treated in a different way in those with AS. AS may mean you don't perceive your emotions in the same way, drugs may not work in your body in the same way. As an example, I have OCD. Had I not mentioned my Asperger's, my doctor would have given me some pills and sent me on my way. This has been shown to be an ineffective, and sometimes damaging way to treat OCD in individuals with AS. It's very effective in NTs, though. I'm going through cognitive behavioral therapy now, which is the appropriate treatment. There can be knockon effects, and while I wouldn't necessarily say that you should seek an AS diagnosis, I think it's a mistake to get counceling on anxiety that you think is related to your Asperger's without even mentioning it. Your treatment may end up being ineffective or even damaging if your councelor isn't aware of your Asperger's.

It is my belief that the vast majority of people who think they have Asperger Syndrome do not actually have it. An individual with no medical training is unqualified to diagnose himself/herself with AS. It is a Doctor's job to ask the proper questions in order to give the correct treatment. DIY diagnoses are quite rightly not taken seriously by Doctors.

"Doc! I think I'm having a heart attack!"
"Well, I'm afraid I don't take patients' own diagnoses seriously, I don't trust your DIY diagnosis, you ignorant pleb."
-Patient dies

OK, it's an extreme example, but... there's a world of difference between bringing up your suspicions, and using that to try and find the best course of treatment, and making a diagnosis on your own and going hell for leather trying to steamroller over your doctor's expertise. Your doctor only knows what you tell him, if you don't impart information that you have, the information they have is incomplete, and your treatment may be inappropriate. You should strive to impart as much information as possible on your condition, and that includes suspicions, including why you have those suspicions.

That doesn't mean that you should hide relevant and potentially important information from them, which is what you're doing if you believe you have comorbid AS and anxiety disorder yet tell the doctor only that you have anxiety. Although if you'd like to spend years ticking off checkboxes of things that *aren't* related to your anxiety, while the situation gets worse and worse, before getting 'way down the list to Asperger Syndrome, that's your right. But why wouldn't you want to put AS at the top of the list (or at least near the top of the list) of things to consider? It may very well lead straight to the most effective treatment with a minimal wait time.

I spent seventeen years looking for a diagnosis and treatment as to why I was exhausted 24/7. I've tried antidepressant drugs, stress management therapy, changes in sleep habits, drinking less caffeine, getting more caffeine, getting a new pillow, a new bed... everything. If I'd known there was even the slightest chance I had sleep apnea, I certainly would have suggested it to my doctor seventeen years ago rather than wait until last winter until every other possibility was exhausted [no pun intended] and so someone finally thought to send me for a sleep study. But no, since I had no clue that was a possibility, I spent the better part of two decades going down the list of the most common reasons people are exhausted all the time. Because that's what doctors do if they don't have enough information specific to the patient: they try one thing at a time, starting with the most common cause and working their way down.