Should I seek an autism diagnosis?
July 26, 2015 8:02 AM Subscribe
Should I seek an autism diagnosis? I was assessed for aspergers ten years ago, which was negative for a stated reason that I believe was incorrect, based on my own research into how autism presents in females. Is it worth trying again?
I have a long history of psychiatric symptoms since early childhood and have been in and out of contact with psychiatric services since my teens. Over the years there have been various diagnoses given: depression, anxiety, social phobia, avoidant personality disorder and borderline personality disorder. (I do not accept the bpd diagnosis as valid because it was made by a psychiatrist who subsequently referred me to a personality disorders specialist service, and the specialists disagreed with the diagnosis. But nonetheless, bpd is now a permanent part of my medical record and it has affected every interaction with medical services since).
Ten years ago, my case manager in the personality disorders service suggested that I very likely have aspergers, and referred me for an official diagnosis. At the diagnostic interview, the assessment was carried out by a psychiatrist who had been a close colleague of the one who originally diagnosed me with bpd, and who had briefly been in charge of my care shortly after the bpd diagnosis before he later switched specialties. He told me that he remembered me from before and that he was surprised to see me. Following the diagnostic interview, he told me that I met every single one of the criteria for aspergers, but that because my special interest at the time was an online role-playing game, I must have too much imagination to be autistic and my problems were therefore most likely "emotional" in nature.
I am fully aware that the depression, anxiety and AvPD are still going to be true whether I'm autistic or not, but the research sources I've since have been virtually unanimous in mentioning that psychiatric comorbidity is common with autistics to the point of being the norm. My case manager said on many occasions that he strongly suspected that one of the root causes of most of my psychiatric symptoms was struggling with unrecognised aspergers as a child, and consequently never getting the understanding and support that I needed. From then on he treated me as if the aspergers diagnosis had been confirmed, and it made a huge difference in being able to accept that being different doesn't mean that I'm broken, and to develop a focus on the things I'm good at instead of lamenting my inability to understand social rules and inability to pass as 'normal'.
The research I've done into how autism presents in females has led me to wonder if the psychiatrist who rejected the aspergers diagnosis was wrong. Women with autism are far more likely to have special interests that involve creative activity and fantasy worlds, and autism in general presents differently in women. In addition to the gender aspect, I also can't help but wonder whether the psychiatrist having known me previously through a bpd lens might have affected his assessment, leading him to ascribe my symptoms as being purely bpd traits instead of potential aspergers markers.
During the years since, my feelings about the (lack of) diagnosis have changed many times. Do I have aspergers/autism or don't I? If I do, then do I count as self-diagnosed or officially diagnosed? Being unable to know how to accurately describe myself has made it difficult to make contact with any other autistic people because I'm scared that they will reject me for not having a proper diagnosis and for appropriating the label. But on the other hand, approaching self-care and recovery through an autism perspective has been extremely helpful in understanding and coping with my symptoms and difficulties. It hasn't solved anything by any means, but it's made managing life a little less unbearable.
After the wall of text, my actual question: Is it worth seeking a second opinion regarding an autism diagnosis? I live in the UK and asking my GP for an autism referral will almost certainly be directed back to the same autism service I was referred to the first time, so the only realistic option would probably be as a private patient instead of through the NHS. I am no longer a patient of the personality disorders service, so I cannot ask my case manager for advice. Is getting an official confirmation of autism going to make a difference, other than settling the question for me and hopefully making it less daunting to make contact with other autistic people? Does that in itself constitute a good enough reason to seek a diagnosis? I can see reasons for it, and reasons why it won't do any good, and I'm paralysed with indecision. What should I do?
I have a long history of psychiatric symptoms since early childhood and have been in and out of contact with psychiatric services since my teens. Over the years there have been various diagnoses given: depression, anxiety, social phobia, avoidant personality disorder and borderline personality disorder. (I do not accept the bpd diagnosis as valid because it was made by a psychiatrist who subsequently referred me to a personality disorders specialist service, and the specialists disagreed with the diagnosis. But nonetheless, bpd is now a permanent part of my medical record and it has affected every interaction with medical services since).
Ten years ago, my case manager in the personality disorders service suggested that I very likely have aspergers, and referred me for an official diagnosis. At the diagnostic interview, the assessment was carried out by a psychiatrist who had been a close colleague of the one who originally diagnosed me with bpd, and who had briefly been in charge of my care shortly after the bpd diagnosis before he later switched specialties. He told me that he remembered me from before and that he was surprised to see me. Following the diagnostic interview, he told me that I met every single one of the criteria for aspergers, but that because my special interest at the time was an online role-playing game, I must have too much imagination to be autistic and my problems were therefore most likely "emotional" in nature.
I am fully aware that the depression, anxiety and AvPD are still going to be true whether I'm autistic or not, but the research sources I've since have been virtually unanimous in mentioning that psychiatric comorbidity is common with autistics to the point of being the norm. My case manager said on many occasions that he strongly suspected that one of the root causes of most of my psychiatric symptoms was struggling with unrecognised aspergers as a child, and consequently never getting the understanding and support that I needed. From then on he treated me as if the aspergers diagnosis had been confirmed, and it made a huge difference in being able to accept that being different doesn't mean that I'm broken, and to develop a focus on the things I'm good at instead of lamenting my inability to understand social rules and inability to pass as 'normal'.
The research I've done into how autism presents in females has led me to wonder if the psychiatrist who rejected the aspergers diagnosis was wrong. Women with autism are far more likely to have special interests that involve creative activity and fantasy worlds, and autism in general presents differently in women. In addition to the gender aspect, I also can't help but wonder whether the psychiatrist having known me previously through a bpd lens might have affected his assessment, leading him to ascribe my symptoms as being purely bpd traits instead of potential aspergers markers.
During the years since, my feelings about the (lack of) diagnosis have changed many times. Do I have aspergers/autism or don't I? If I do, then do I count as self-diagnosed or officially diagnosed? Being unable to know how to accurately describe myself has made it difficult to make contact with any other autistic people because I'm scared that they will reject me for not having a proper diagnosis and for appropriating the label. But on the other hand, approaching self-care and recovery through an autism perspective has been extremely helpful in understanding and coping with my symptoms and difficulties. It hasn't solved anything by any means, but it's made managing life a little less unbearable.
After the wall of text, my actual question: Is it worth seeking a second opinion regarding an autism diagnosis? I live in the UK and asking my GP for an autism referral will almost certainly be directed back to the same autism service I was referred to the first time, so the only realistic option would probably be as a private patient instead of through the NHS. I am no longer a patient of the personality disorders service, so I cannot ask my case manager for advice. Is getting an official confirmation of autism going to make a difference, other than settling the question for me and hopefully making it less daunting to make contact with other autistic people? Does that in itself constitute a good enough reason to seek a diagnosis? I can see reasons for it, and reasons why it won't do any good, and I'm paralysed with indecision. What should I do?
I live in the UK and asking my GP for an autism referral will almost certainly be directed back to the same autism service I was referred to the first time
That's no reason not to do it. 10 years is a long time and you probably wont even see the same doctor. Also understanding of autism has come a long way in that time
(also fwiw, I play online and table-top RPGs and I have little to no imagination or creativity ;) )
posted by missmagenta at 8:27 AM on July 26, 2015 [2 favorites]
That's no reason not to do it. 10 years is a long time and you probably wont even see the same doctor. Also understanding of autism has come a long way in that time
(also fwiw, I play online and table-top RPGs and I have little to no imagination or creativity ;) )
posted by missmagenta at 8:27 AM on July 26, 2015 [2 favorites]
Yes, I would definitely do it! I wish I could give you tips for going through the NHS this second time but hopefully another MeFite can.
Trying sounds win-win to me, regardless of outcome. Of course, if you are finding similar frustration this time, perhaps you can pay out-of-pocket to find someone who'll give you a second opinion. Good luck!
posted by smorgasbord at 8:38 AM on July 26, 2015
Trying sounds win-win to me, regardless of outcome. Of course, if you are finding similar frustration this time, perhaps you can pay out-of-pocket to find someone who'll give you a second opinion. Good luck!
posted by smorgasbord at 8:38 AM on July 26, 2015
Things have changed a lot in 10 years, if you're interested in another opinion it's definitely worth it, I don't see much downside other than wasted time.
One thing that has changed recently is the formal diagnosis. I'm not sure what the UK uses, but in the most recent DSM what was considered Aspergers before is now Autism Spectrum Disorder, and your symptoms sound like they fit better than with the old version.
One thing to keep in mind is that there's no reason someone cannot be diagnosed with both BPD and autism spectrum at the same time, so it sounds like your prior psychiatrist was in error. You can mention that to whoever you see next if you want
posted by JZig at 9:32 AM on July 26, 2015
One thing that has changed recently is the formal diagnosis. I'm not sure what the UK uses, but in the most recent DSM what was considered Aspergers before is now Autism Spectrum Disorder, and your symptoms sound like they fit better than with the old version.
One thing to keep in mind is that there's no reason someone cannot be diagnosed with both BPD and autism spectrum at the same time, so it sounds like your prior psychiatrist was in error. You can mention that to whoever you see next if you want
posted by JZig at 9:32 AM on July 26, 2015
Also "lack of imagination or emotions" isn't part of the autism diagnostic criteria at all any more, so that shouldn't be an issue
posted by JZig at 9:35 AM on July 26, 2015 [3 favorites]
posted by JZig at 9:35 AM on July 26, 2015 [3 favorites]
You might want to check out my answer from a few days ago.
Is getting an official confirmation of autism going to make a difference, other than settling the question for me and hopefully making it less daunting to make contact with other autistic people? Does that in itself constitute a good enough reason to seek a diagnosis?
These are perfectly valid (and common) reasons to seek a diagnosis.
Also, you will probably find making contact with other autistic people daunting at times, even after/if you get a positive diagnosis.
posted by frantumaglia at 10:47 AM on July 26, 2015 [1 favorite]
Is getting an official confirmation of autism going to make a difference, other than settling the question for me and hopefully making it less daunting to make contact with other autistic people? Does that in itself constitute a good enough reason to seek a diagnosis?
These are perfectly valid (and common) reasons to seek a diagnosis.
Also, you will probably find making contact with other autistic people daunting at times, even after/if you get a positive diagnosis.
posted by frantumaglia at 10:47 AM on July 26, 2015 [1 favorite]
Bluebell, I asked almost the exact same question the other day, right down to the BPD diagnosis. I'm in the US, so can't address how getting rediagnosed might work for you in the UK, but wanted to mention something about the borderline diagnosis.
The last time I was in therapy, probably about 8-9 years ago, I made the conscious decision not to bring up BPD. I felt it was coloring the entire therapy experience in a really nasty way. It's not that I think that the disorder itself doesn't exist; it may be perfectly valid for many people. But for me, after researching, and thinking about how my personality and relationship styles are affected in times of extreme stress, I felt the diagnosis didn't fit right. It's like being diagnosed with some permanent skin disorder when you're being seen for a poison ivy reaction. But it's worse than that too, because it's a diagnosis that seems to send up red flags for therapists. Now they have to watch you more closely, because you may do something drastic and dramatic. It just felt so demeaning.
So, this last time I was in therapy, I just didn't bring it up. We focused on other stuff. Not the right stuff, I think--like you, I sense very strongly that I have ASD traits (in my case, a lot of attention-oriented stuff as well)--but at least the therapist wasn't looking at it all through the lens of that problematic personality disorder. I didn't offer my former medical/psych records to them, anything like that.
I do not know whether your records are more centralized in the NHS. Here in the US, our records-keeping is astonishingly fragmentary. It could be you would see someone, and they would have immediate access to your prior diagnoses even if you were a private patient; I don't know, but it would be worth finding out. Even if so, the answer would simply be, "I think that was an incorrect diagnosis, and I think there is something else underlying these symptoms."
I think it's worth it, getting a diagnosis. There is so much moral weight given to whether or not you can function mentally the same way as everyone else, that it could be a real relief to be able to say, if only to yourself, I knew I was not bad, evil, dramatic, a failure, whatever.
posted by mittens at 5:55 PM on July 26, 2015 [1 favorite]
The last time I was in therapy, probably about 8-9 years ago, I made the conscious decision not to bring up BPD. I felt it was coloring the entire therapy experience in a really nasty way. It's not that I think that the disorder itself doesn't exist; it may be perfectly valid for many people. But for me, after researching, and thinking about how my personality and relationship styles are affected in times of extreme stress, I felt the diagnosis didn't fit right. It's like being diagnosed with some permanent skin disorder when you're being seen for a poison ivy reaction. But it's worse than that too, because it's a diagnosis that seems to send up red flags for therapists. Now they have to watch you more closely, because you may do something drastic and dramatic. It just felt so demeaning.
So, this last time I was in therapy, I just didn't bring it up. We focused on other stuff. Not the right stuff, I think--like you, I sense very strongly that I have ASD traits (in my case, a lot of attention-oriented stuff as well)--but at least the therapist wasn't looking at it all through the lens of that problematic personality disorder. I didn't offer my former medical/psych records to them, anything like that.
I do not know whether your records are more centralized in the NHS. Here in the US, our records-keeping is astonishingly fragmentary. It could be you would see someone, and they would have immediate access to your prior diagnoses even if you were a private patient; I don't know, but it would be worth finding out. Even if so, the answer would simply be, "I think that was an incorrect diagnosis, and I think there is something else underlying these symptoms."
I think it's worth it, getting a diagnosis. There is so much moral weight given to whether or not you can function mentally the same way as everyone else, that it could be a real relief to be able to say, if only to yourself, I knew I was not bad, evil, dramatic, a failure, whatever.
posted by mittens at 5:55 PM on July 26, 2015 [1 favorite]
Response by poster: Patient records tend to be somewhat fragmentary, but are increasingly getting centralised. The biggest problem, however, is that accessing any specialist services is done through the GP who acts as a gatekeeper and must make the referral. Part of the referral involves providing a medical history in order to explain why the referral is warranted. So any referral is going to include the bpd diagnosis along with the history. The only way to avoid it is to go private, and even then it'd have to involve finding someone who would accept a self-referral.
posted by bluebell at 7:14 PM on July 26, 2015
posted by bluebell at 7:14 PM on July 26, 2015
Bluebell, I totally get why you want a diagnosis. However, as a psychotherapist, I am convinced that all a diagnosis of this sort is is a shared understanding among medical types so we are talking ROUGHLY about the same thing. And a diagnosis, at least in the U.S., is necessary for insurance reimbursement. But because there is no scan, lab test, etc to scientifically confirm mental health diagnoses, it becomes extremely subjective. You sound like you have done a lot of research on the subject. If you relate to the DSM IV criteria of Aspergers and you have found this framework of self understanding meaningful, go with it. As JZig says, the new DSM lumps Aspergers with Autism without differentiation. Most people in my field vehemently disagree with this. I think that only happened to open up services to children with Aspergers that were previously only available to those kids diagnosed with Autism, but I believe this to be a huge mistake because as you so clearly demonstrate with your insightful post, people with Aspergers can be insightful, creative, introspective, imaginative and highly functional. I know nothing about the UK mental health system, but if you can find a therapist to help you work on Aspergers-type symptoms that you have identified are obstacles for you, a formal diagnosis one way or the other is secondary, at least in my opinon. I admire your courage to stand up to medical opinions that don't resonate with your obviously insightful and intelligent self assesment. Best of luck!
posted by Lylo at 10:26 PM on July 26, 2015 [1 favorite]
posted by Lylo at 10:26 PM on July 26, 2015 [1 favorite]
because my special interest at the time was an online role-playing game, I must have too much imagination to be autistic
This, frankly is specious BS, and that has nothing to do with your gender. Creativity and imagination, as well as an interest in online RPGs are common in people with high-functioning ASD.
I am fully aware that the depression, anxiety and AvPD are still going to be true whether I'm autistic or not
This may not be the case with regard to a personality disorder diagnosis. To quote a specialist in ASD that I know:
"the way the 'diagnostic systems' work is that if someone has a 'major mental health or developmental condition' (e.g. ASD) then any personality disorder diagnosis is considered inappopriate as it is the major condition that is regarded as the fundamental one."
If you do seek a diagnosis, my advice would be to seek out a specialist who is experienced in dealing with ASD in adults [and women if possible]. ASD does present differently in males vs females, and adult diagnosis is difficult as the symptoms can be masked by the coping strategies we all develop over the years.
posted by HiroProtagonist at 9:15 PM on July 27, 2015 [1 favorite]
This, frankly is specious BS, and that has nothing to do with your gender. Creativity and imagination, as well as an interest in online RPGs are common in people with high-functioning ASD.
I am fully aware that the depression, anxiety and AvPD are still going to be true whether I'm autistic or not
This may not be the case with regard to a personality disorder diagnosis. To quote a specialist in ASD that I know:
"the way the 'diagnostic systems' work is that if someone has a 'major mental health or developmental condition' (e.g. ASD) then any personality disorder diagnosis is considered inappopriate as it is the major condition that is regarded as the fundamental one."
If you do seek a diagnosis, my advice would be to seek out a specialist who is experienced in dealing with ASD in adults [and women if possible]. ASD does present differently in males vs females, and adult diagnosis is difficult as the symptoms can be masked by the coping strategies we all develop over the years.
posted by HiroProtagonist at 9:15 PM on July 27, 2015 [1 favorite]
This thread is closed to new comments.
There are usually 2 camps with ASD: One is "it's not a disorder, embrace them as a person", and the other one is, "their brain isn't functioning like a 'normal' person, so they're abnormal"
I totally understand a diagnosis IS really helpful in terms of self-care and all that goodness, but doctors kind of just want you in and out of their office as quickly as possible. With something as sensitive and delicate as ASD, it has a history of being misdiagnosed. I know people have been given a wrong prescription that has caused a lifelong stutter because their ASD was misdiagnosed as ADHD. This is NOT an average case, but it makes me wary of any drugs.
It's a really, really tough call, and I guess it depends on how much you want to label yourself in terms of your personal self care and development. Just because you don't have a DSM diagnosis doesn't mean you aren't actually autistic/ Aspergers . One of the great thing about people living with ASD- Seeking out imposters and judging them aren't usually in their m/o. Here's the thing though- it's about your frame of mind. If your self-care is working without a diagnosis-- keep doing that!
Your depression and anxiety sound like they could be helped first.
Much love to you
posted by Kestrelxo at 8:20 AM on July 26, 2015 [3 favorites]