Diagnosis as an adult

Post Reply New Topic

Hi all, I'm new here.

In the past couple of years I have been reading up more and more about Asperger's (and finding out how bad my conception of the syndrome was, in the process!). I have been on the fence as to whether I have it or not, until I recently came across some literature on the female-specific manifestations of the traits for the syndrome and discovered that about 95% of them fit me to a T and also pretty much explain everything about my childhood and adolescence.

I am contemplating whether I should go see someone about it and whether it would be of any use at this stage in my life since I'm now an adult. The main reason I think it might be useful for me to get a diagnosis is because I believe it could improve my relationship with my mother, which has always been complicated due to my issues with emotional relations and affection. The thing is, I don't even know where to start. I don't feel comfortable going to a my GP to get a referral, to be honest, and I have no idea what the process entails as a grown up and so on.

If anyone has any experience with this or can give any advice, I would be really happy to hear your thoughts.

A good way to DIY before seeking a diagnosis is to complete one or more of the University of Cambridge Autism Research Centre tests (http://www.autismresearchcentre.com/). They have been determined to be accurate for "screening" adults who have Asperger's Syndrome (AS) or other Autism Spectrum Disorders (ASD), but not diagnosing them (I don't know if any diagnostic test has been approved yet for diagnosis of adult AS). In any case, they are free of charge to download, complete and, with the test key(s), score. Descriptive research papers about each tests are also available for free dowload.

If you are secure financially and expect to be so for the forseeable future, do not expect to seek formal education, and generally are not concerned about your symptoms worsening to the point that you need any kind of assistance, you probably don't need a formal diagnosis.


Would a self-diagnosis help the relationship?


Depends on where you live. In the U.S., you will have to start with your GP unless you have at least $1000-$2000 to pay for the evaluation yourself, or can get an assessment free/on the cheap at a school of psychology. Based on experiences here on WP, the process seems to vary quite a bit, but usually seems to involve talking with a psychologist over the course of a few sessions and filling out some questionnaires, or the more intense assessments with full IQ testing that last 1-2 months.

I'm going through much of the same thing that you are, except I'm probably a bit younger. I'm not formally diagnosed yet, but I'm trying to be. It really wouldn't help me at all, but I'm mostly doing it for my mother. My relationship with her is... difficult. It's probably better than it is with the rest of my family but it's not great. I'll tell you where I am with it though.

So, I told her some time ago that I thought I had aspergers, and in short she refused to listen to me. Instead she thought I was depressed and "trying to lable myself." I tried to show her the different symptoms of autism and I thought maybe she would see (I also showed her the female symptoms because I am female, and they also apply more to me), but instead she went deeply into denial, said the symptoms could apply to anyone (because she herself fit much of the criteria, no suprise there), and she stuck me into therapy for depression. It didn't take very long for the therapist to figure out that I, indeed, wasn't depressed or diagnosis shopping (or whatever the heck she called it), and that I had autistic traits. So tomorrow at my session I'm going to try get her to help me explain to my mother (yet again) that I have autism, or at least let me try go get a diagnosis at a university near where I live.

I'm hoping that my diagnosis will help improve her understanding of me and probably also of herself (because I'm pretty sure that she's also autistic), and also improve our relationship. I don't know if this helps you or not, but I'd thought I'd tell you anyway.

I hope a formal diagnosis satisfies your mom but rejection by parents of formal diagnosis is common.

Are your symptoms whether they are from Autism or not an impediment to your life?

Do you need a official confirmation to ward off inhibiting doubts?


Welcome to Wrong Planet

Thank you all for your advice and insights.

I did take most of those tests and I fall into the AS-end of the spectrum in every single one of them. To be honest, by this stage, the only reason why I'm still unsure whether I might have AS or not is because I don't have a problem reading facial expressions and voices 90% of the time (at least not as an adult; when I was a child I was often told people's intentions and feelings were flying right over my head and confused me and I still struggle with some types of people) and I always thought that was a necessary component of the syndrome for the diagnosis.

I'm pretty sorted with life, I just got my PhD and stared a good research job, so I wouldn't be seeking a diagnosis to help me with financial issues or help me in my work and I don't think my symptoms will get worse (fingers crossed). Actually, with the awareness I've developed, I've started to accept them and it's making life a bit easier, since I'm not forcing myself to do things that make me highly uncomfortable anymore or to go against my "nature".

It's hard to say whether my mother would reject the diagnosis or learn to be more at peace with how I am, I think she would most likely accept it because she also struggled with depression in the past, so she doesn't take mental health issues lightly. Also, I'm pretty sure my grandmother might have had it too, from what I remember and the stories I hear about her. My main fear is that she will blame herself for it, which she's prone to do, or take it as a death sentence because of the misconceptions about autism.

I'm in the UK, and I've been reading up on how to get a referral through the NHS as an adult, but it seems to be a bit of a fight against windmills. I read about lots of people having to wait months or being dismissed altogether or sent to see people who were not specialists, so it does't look very promising in the public sector. I am not aware of whether my university has assessment services, maybe I should look into that. There's a part of me that thinks a self-diagnosis will do and I don't really care for putting a label on myself, it's not like having an official one will change anything in practical terms. But another part of me can't stand not having things written down and confirmed, for my own peace of mind and to facilitate other people's understanding of how I am.

In any case, it's very useful to read around here and thank you for the welcome.

I think that is itself one of the problems which we all have to deal with. The word 'literalism' springs to mind, but I'm not sure if I made it up, or whether it is in the dictionary.

Professional approaches to adult ASD are so varied that it's hard to be certain about any of them. It is arguable that our own researches might render us as knowledgeable about the subject as any other 'expert'. Your own written confirmation may be all you need.

A lot of neurotypical women and men can fit the so-called female traits because they are very vague, and could apply to a lot of people. There's no research backing up those traits. They are just thoughts of an author with AS. So there is no research or science to them.



She is right though, those traits are incredibly vague and general, and could apply to a lot of people who are not anywhere near the autistic spectrum. The point of a diagnosis is to help those who are impaired by their condition, and you just said you don't even need a diagnosis.

So it's incredibly unlikely you are on the spectrum if you have no impairments.

edit*

---

In general, I agree with Acadia's view of things. But the absence of visible impairments is part of the problem - it certainly doesn't rule out the possibility of ASD.

I didn't say that only the female traits fit me, I said that the manifestation of those traits explain a lot about my childhood and adolescence. I fit the vast majority of the most classic "male" traits of the syndrome too (and score high on all those screening tests). As far as I'm aware, the literature I'm referring to talks about manifestation of the symptoms being different for girls, rather than about girls having different traits altogether. I am aware that, not only the "female traits", but also the most classic Aspergers traits, can also be found in NT people, or people who are not on the spectrum but might have other disorders (e.g. OCD). The difference is in the number of traits that occur in the same person, and the severity, as per DSM.

But you did say that the main reason for seeking a diagnosis is to improve your relationship with your mother, not because of severity which would imply impairment. You mentioned that you think you wouldn't have much use for it beside this reason, so whatever traits you do have the implication is that they're not impairing, which is fundamental to the diagnosis. So if you have some traits, but they aren't significant then they would fall under the term subclinical. Also you wrote that you were on the fence until you read the "female traits"; why would that be if you also fit the "classic traits"?

One manifestation of autistic traits in females that I've read is that girls would have circumscribed interests in typically "feminine" things. However, I haven't seen research about this. The list of traits I keep seeing was written by an author in a book. Autistic traits are found in NTs, although some are ostensible, and often have underlying psychological reasons. Gaze avoidance in NTs could be due to shyness, for example. And social problems can be found in NTs for reasons such as social anxiety. I wouldn't say OCD is at all the same as the adherence to routine and rituals found in people with autism. I believe intrusive thoughts and compulsive rituals are motivated by certain psychological anxieties.

Those traits aren't "classic male traits", they're just autistic traits. Online tests are subject to bias as well, and their usefulness is debatable.

---

I am not seeking a diagnosis because I'm currently severely impaired, no. You're right in that respect. But the reason I'm not "impaired" is that I'm using a lot of coping mechanisms to navigate daily life. I guess the fact that I have to use those coping mechanisms in the first place would be considered an impairment by some. Because of these coping mechanisms, things have improved as I got older, but these traits did negatively affect me in the past and some still do. For example, I struggled immensely with social relations as a child, and I still do to a large extent. My obsession with some of my special interests has gone dangerously close to causing some real damage to my academic career (which was likely saved only by the fact that my academic career is also one of my special interests). My need for routine and rituals caused me a lot of distress and panic attacks over a long period of time in getting adjusted to life at university, where I was suddenly faced with no structure. I have struggled because my empathy is generally low and I had to work hard at trying to respond the way people expect me to respond. I have issues with physical contact and had issues with hypersensitivity to texture in food as a child which led to some pretty traumatic experiences in kindergarten. I refuse to drive because I get overwhelmed by information and feel out of control and it makes me panic and be in a constant state of anxiety. I've always stimmed but always when I'm on my own and nobody can see. And so on. I could go on forever listing things and there's other, more personal stuff, I'm not comfortable disclosing because I'm so used to masking it. I have learned to cope with a lot of these things, but the "symptoms" are still there. I guess a better way of putting it is that instead of letting them impair me, I try to work around it as much as I can. But this can indeed be draining and exhausting a lot of the time. So whether I'm impaired or not, or how much, I guess is a matter of perspective. I'm sure I'm doing very well compared to most, though, and maybe this is enough not to warrant a diagnosis. I agree that autistic traits, in isolation, are also found in NT people. But, like I said, it is the comorbidity of an awful lot of traits that has me wondering about myself. I don't have just one isolated trait, or two, I have about 90% of them, except marked impairment at facial recognition.

The reason why I said I was on the fence before reading about female manifestations of autism, is because, to the best of my knowledge, the impairment in reading faces and voices is crucial to the diagnosis, and it's an impairment I don't have as an adult (at least that I'm aware of), most of the time. However, as far as I now understand, it seems that they're beginning to find that females on the AS spectrum appear to be better than males at this. And the other thing is the idea that masking and imitation is used as a coping mechanism by females, which is something that I have definitely done and still do. Part of the debate about female autism is whether it is missed in assessments unless it's accompanied by severe intellectual or other impairments because of masking. I do know that, for example, I learned to mask my low empathy and lack of emotional responses to certain situations because, as a girl, you are very much pressured into being warm and empathic or you're made to feel like some kind of monster, whereas there is no such pressure for boys. That must have been one of the most distressing symptoms for me, growing up, because I was always made to feel like there was something really screwed up about me, and so I learned to act and copy empathic people to respond the way I'm expected to. And I would never have the courage to admit this to anyone in person because of how distressing the experience of being constantly told off was and I cannot stand that judgment.

Anyway, that was a long post, I'm sorry. My bottom line is that yes, my need for a diagnosis would be primarily as an instrument for people, especially my family, to understand me better and to connect the dots about a lot of stuff about my life. On the other hand, I'm actually not a fan of labels at all, and, as such, if I did get a diagnosis, I would probably only disclose it to my parents. I know my symptoms get exacerbated by stress and I have sought professional help when that happened and it could have had detrimental effects on my life. So maybe having a diagnosis would help with accessing help too, should I need it. But I found that therapy doesn't really work for me because I'm a "DIY" kind of person. People can tell me "do A and B" until they're blue in the face but if I don't embrace it consciously myself I'm never going to.

Alex913, I recognize myself in your story. I got my diagnosis 2,5 years ago, when I was 27, and the process of decision making was similar to yours. It wasn't until I read biographies written by autistic women that I fully accepted that I had Asperger's. Now, the psychiatrist thought it was obvious that I had it, but I had gone through a process of demasking myself before, without that it wouldn't have been possible to see the aspergian me, not in that brief time that is a doctor's visit. I was way too much into projecting an image of myself as a capable person and I couldn't stand people seeing me as lacking in any area, least not the social one that is so important to be seen as successful in society.

I don't regret getting an official diagnosis but I live in Sweden and I don't know what you have to go through to be able to get the diagnosis in the UK. It's true what you said that it might come in handy if you'll need assistance later in life, and also as a support in letting other people to get to know you without the pretending.

So does everyone, being impaired isn't a decision you make.



So you lack deficits in social cognition.



I'm not aware of any research about this, do you have a link? Autistic females still have the same fundamental deficits in social cognition that boys do



This theory is dubious because severely affected autistic girls have the exact same problems as boys. To believe that only mildly affected girls are better at masking is convenient.



Boys are pressured in many ways, they're expected to be more vocal, to be more socially engaging, to be more socially aggressive. If this pressure on girls is what makes girls better at masking - then boys should be even better at masking, and yet this isn't the case.



I'm not buying that, otherwise you wouldn't be here.

.

That's okay, it's an interesting post.

---

I was diagnosed as an adult at 29. I was diagnosed May this year.

The process starts with your GP who will make the necessary referrals if they believe you present traits on the Autistic Spectrum. Getting a doctor to take notice of your request for Aspergers testing as an adult is difficult because many doctors believe that Aspergers is generally picked up as a youth, and if it isn't then it's likely they will think you don't have it. Also a lot of Aspergers traits are confused with other conditions, the last thing you want is a misdiagnosis, so you will likely end up being poked and prodded before the ball starts rolling - if you don't fit the bill for the other conditions that is.

When I had my assessment they spoke to my mother, and my current partner. My mom was terribly inconsistent - my report even says potential Aspergers in mother. But my parents split up when I was young, and my Dad raised me, so my mother didn't get to see much of my growing up as we lost contact from about 7 years old to 16. My Dad is the type of person that wouldn't even spot issues. Most of my traits as I was growing up were blamed on me by my Dad - when in fact they were Aspergers traits.

This really helped my diagnosis.

But, as an adult, especially in the UK the support for Aspergers is limited. I still struggle in life, and I've had very little support.

The only thing a diagnosis did for me was to help me connect the dots. Everything from my past now makes sense. But the past is done and the past struggles can't be fixed. I wish I had an early diagnosis so I could have got help when I was younger.

If your "traits" don't bother you, and you're perfectly happy in life, then a diagnosis is probably not going to be needed.

If you want a diagnosis though, it will be a battle with your GP. Take the tests online, see how you get on, print them off and take them to your GP.

Good luck

I was diagnosed only 6 months ago at age 35. The suspicion had been there for a while, but having the official diagnosis was, for me, quite a relief because I had confirmation that I was not the sociopath, the robot, or the a**hole I had been accused of being all my life. Also, learning about ASD was like reading my life story and having it make sense for the first time. So, yeah, it was comforting having a label to put on what was so different about me compared to my peers and family. But there has been more to it. As far as the coping goes, I, like you, found coping mechanisms throughout adolescence and early adulthood that allowed me to start a successful business and lead a (limited, mind you) social life. But after the diagnosis, I learned how my coping strategies were only barely adequate. The new strategies I've learned and am learning have really opened my world up as well as brought me more relief than I had thought possible. For instance, what I once thought were panic attacks I now recognize as 'meltdowns', and know how to avoid those and cope with them properly when they happen. Yes, the treatment I had sought out for anxiety helped, but only so much. Also, there are vast resources (books, Cognitive-Behavioral Therapy, blogs, etc.) that have furthered my ability to communicate with the 'neurotypical' people in my life, be more comfortable doing so, and know how to tastefully withdraw myself before I reach my limit for socialization. Not only were many of the coping strategies I had developed before my diagnosis less than optional, most of them were unnecessary. My diagnosis gave me permission to be different, or at least allowed me to accept it. I no more have to struggle to be like everyone else than a diabetic has to struggle to not be diabetic; manage my stress and sensitivity levels, yes; but be normal... well, 'normal' is a spectrum, too.