There’s a new article today at Autism Women’s Network: Autistic Women: Misdiagnosis and the Importance of Getting it Right
The rate of being diagnosed with a co-occuring condition if you’re autistic is very high. In fact, I’m curious if there’s anyone here whose sole diagnosis is autism or Asperger’s. I have a comorbid diagnosis of an anxiety disorder and probably have mild undiagnosed OCD. The really interesting thing is that so many of us don’t feel that all of our comorbid diagnoses are a good fit. I wrote about how my anxiety doesn’t feel disordered to me and so I don’t think the diagnosis fits.
I also think it’s interesting that we’re often given diagnoses for conditions that have many overlapping traits with autism. For example, dyspraxia and sensory processing disorder share nearly all of their traits in common with autism. How do clinicians decide that one autistic person should also get a dyspraxia or SPD diagnosis while another person with a very similar profile doesn’t? I would love to hear your thoughts on this or anything related to the article in the comments here.
Also, I owe a huge thank you to the people who filled out the survey about comorbid conditions and patiently worked with me on sharing their stories for this article. My next article for AWN will be about motherhood and the challenges that being on the spectrum can present as well as how it might affect our choices regarding childbearing. Okay, so that’s likely more than one article.
If you’d like to share your thoughts and experiences, I’ve created a short 5-question survey at Questions about Autistic Motherhood. It’s open to both women with children and women who do not have children. As long as you identify as being on the spectrum and would use the term mother to refer to yourself if you had a child, then you’re welcome to take the survey. I’m especially interested in the question about what supports autistic moms would benefit from–if there are enough responses, that will be its own article, because I think its a subject that doesn’t get nearly enough attention.
Musings of an Aspie 
Yeah. As a kid, I was diagnosed with situational depression in high school. Correct. But they missed the underlying part of it.
I’m screened positive for both ASD and ADHD now, but I’m not sure how much of the ADHD is just ASD traits.
I wonder a lot about the overlap between ADHD and ASD. I was evaluated for ADHD and it was ruled out. That feels right to me because I have family members with ADHD and my EF issues are very different from theirs.
Makes sense. My EF issues are very different from my sister, who is allistic but definitely does have ADHD.
As well: I was diagnosed as having social phobia as a preteen. Which, yeahno. Phobia implies my anxiety is irrational. 😛
I have a diagnosis of GAD I’m waiting for referral for autism assessment. I think I have been wrongly diagnosed. I am anxious becuase of my sensory difficulties, changes to rouutines, being misunderstood and misuderstanding others.
I felt the same way – that my anxiety (and also what might look like anxiety but is different) is a product of being autistic. Good luck with your assessment.
This iis such a hugely stressful and politically charged topic, that I never talk (write) about it with anyone anymore. I am single & have two children whom I do not parent the way that society expects and demands. This is reality for me and them. It is utterly pointless for me to find any support so I stopped trying a long time ago. I filled out the questionnaire as best I could.
Thank you for filling out the survey even though it was difficult. It’s really important for people to know how difficult it can be and I’ll do my best to convey that side of the issue in whatever I write.
Lucy, been there and done that. How can I help?
I was diagnosed with FMS (Fibromyalgia) along with CFIDS -or- CFS (Chronic Fatigue Syndrome). That was over 10 years ago, I am now 46, I finally realized my aspie condition about a year ago, at the age of 45 years old -after I developed asthma on top of everything else!. My mind woke up to the reality of my true condition (like a light bulb!) once I got rid of the gluten out of my diet (6 months prior)! I am now grain free as well and it has been a life saver. I now realize why the “no-carb” diet I embarked on over 10 years ago was so successful – I never realized back then I was on the spectrum. But that diet alone was not enough for me to maintain a healthy digestive tract, So I recently found out about the SCD diet – the SCD diet (Specific Carb Diet) is an “almost” no-carb diet, with carefully added carbohydrates that consist of single cell sugars only (no polysaccharides allowed) and this has proven awesome for my weight and health. I will celebrate one year on the diet Feb. 14th of 2014.
I would say the CFS diagnosis has been the closest diagnosis to what I really have felt for over ten years, severe debilitating fatigue, and then the pain of FMS just goes along with this for me.
I am curious, Has anyone else experienced a co-morbid fatigue syndrome along with their ASD?
The constant fatigue has dramatically changed my life.
I’ve heard a lot of people say that dietary changes have made a huge difference. I don’t follow a specific diet (just googled SCD 🙂 ) but over the past few years I’ve eliminated a bunch of stuff from my diet and feel much better, especially in terms of emotional stability.
I’m curious about fatigue as well, especially in autistic women as they approach middle age.
I have to eat a very careful diet. Suffice to say, I have GI issues. Kinda like IBS on steroids, only neurological rather than idiopathic. My GI nerves are underdeveloped, so stuff doesn’t move the way it should.
I’ve had a lot of fatigue issues since menopause at age 50 (i’m now 58). I am self-diagnosed ASD, within last 18 months. I was reading what you wrote about fluid adaptation and that fits with my own thoughts on it. It feels like I just don’t have the energy to put into ‘pretending to be normal’ any more
The fatigue that comes with menopause is pretty awful, isn’t it? I think it contributed in part to my own seeking a diagnosis as well.
This is such an important discussion to have, especially coupled with your article on the difficulties with diagnosing women with ASD. I really appreciate you letting so many of us have a strong voice through these pieces!
I appreciate everyone who takes the time to answer the surveys. If only I could include all of the answers!
My diagnosis was just ASD/Aspergers as an adult woman – but that’s all I went for, I didn’t do tests for everything else and I probably presented well enough that she didn’t see any point in other diagnoses. Also being an aspie doctor I guess she kept to the topic. She offered more help if I wanted/felt I needed it, but I didn’t feel I did at the time.
I did the big 100+ question screening test as well as screenings specifically for depression, anxiety and ADHD with my ASD screening. I wonder how clinicians decide who gets what tests beyond the one we show up asking for.
i’m a therapist and can tell you that there is not a uniform approach for diagnosis. ideally, people would get a full battery of screenings as well as an in-depth clinical interview. of course, that would mean insurance has to cover all of that and we know that isn’t going to happen. in the end, it comes down to what each provider knows in terms of symptoms, syndromes, and disorders; then how good they are at rooting out those nuances. this is why i always encourage visits to specialists rather than generalists, especially when seeking an official diagnosis. of course, specialists can be led by their own confirmation bias.
Thank you for the insight into the process. It must be challenging to differentiate between some of the more nuanced diagnoses, especially when time with a client might be limited.
I saw a lecture a while ago on how confirmation bias can affect what a child first gets diagnosed with – kids who go to an ADHD specialist are likely to get an ADHD diagnosis while kids who go to an ASD specialist are likely to get a spectrum diagnosis, even with a similar set of traits. In part, that’s due to how hard it can be differentiate between the two in young kids but there also must be an element of confirmation bias at work.
Chiming in on this point, I’m a graduate student in social work, and in my course on diagnosis (I dislike the term “psychopathology”) my classmates and I frequently drew different conclusions than each other and than our professor, sometimes radically different. The area of comorbidities seemed especially troublesome, with some people erring on the side of generalism, others on the side of specificity. In short, although the aim of the DSM-V is to diminish inconsistencies in diagnosis and treatment, leading to better care / support, there are a number of factors influencing diagnosis at a given point in time. Because I believe that mental health is a continuum and also intimately connected to digestive health, my personal aim is to take a holistic approach that best supports the comfort and well-being of the whole person. And I believe strongly that the microbiome is key. As always, I’m appreciative of Cynthia’s posts and the smart, honest, and illuminating comments that follow.
That’s interesting that you and your classmates frequently came to different conclusions. I imagine there are a lot of variables that go into formulating a diagnosis, especially in a classroom situation where the case studies are probably designed to both elicit a certain response and be challenging to sort out. Thank you for sharing your experience. It’s helpful to hear from those who are tasked with making diagnoses about how they view the process.
I remember trying to explain to my program mentor how my complicated familial history, Aspergirl self, and GAD overlapped by using a Venn diagram drawn on a 5X7 notecard in magic markers. I explained how these aspects of myself interacted to shape how I reacted to heightened stressors and might influence how others perceive me: “It’s in the overlap.” I’m still not entirely sure how these parts of myself interact, but knowing that they do helps me be self-compassionate when I feel stuck (in my worries, frustration with the current situation, difficulties figuring out how to handle things…).
She seemed to understand where I was coming from and I ended up sending her Being Mentally Ill in the Mental Health Field (http://persephonemagazine.com/2012/01/being-mentally-ill-in-the-mental-health-field-experiences-of-a-graduate-student/).
Now I want “it’s in the overlap” on a t-shirt. 🙂 The overlap is huge and I think only just being recognized and talked about with respect to adults on the spectrum. Is the article that you linked to yours?
No, I wish I’d written it since it covers most of the major talking points I needed at the time. It’s from a feminist blog called Persephone Magazine and written by Effity.
The overlap is an interesting conversation since clinicians seem to diagnose based on most salient characteristics and service needs.
It’s a really interesting read. Thank you for sharing it. I was especially struck by how there is so much stigma around mental health issues in the mental health field.
i love this venn diagram idea – will definitely use it in the future!
I’m an enormous fan of color-coding and visual aids, so it helped immensely during that conversation and those that followed. Although I remember showing my therapist my diagram and her suggesting I create a version stating how the traits that seemed to hinder me were also assets sometimes (useful exercise, too).
I asked my therapist for a separate diagnosis for SPD, so that I can chose to disclosure SPD but not ASD if I need to. The reason is that my sensory issues (espec. noise sensitivity) often directly prevent me from doing things I am expected to do or affect me so much (and sometimes visibly) that trying to stuck out certain common situations is like torture, so it would be useful for me to be able to give a general, simle explanation.
The same can of course be said about disclosing ASD… but disclosing SPD to en employer, for example, is more simple and less risky than disclosing ASD… I think.
My therapist thought my sensory issues are so dominating so it can justify a separate SPD diagnosis and made a document that says I have SPD, however it is not really formally valid because SPD can only be diagnosed by an occupational therapist. An OT may not want to give me an SPD diagnosis since it is already part of the ASD diagnosis. Anyway, I do still consider if it would be useful in regard to employment and accomodations to try to get a formally valid SPD diagnosis.
To your other questions, I’ve had many issues during my life and some have been formally diagnoses. May of them are typical comorbids of ASDs, some are not. Most don’t apply anymore.
Diagnoses: depression, social anxiety, borderline psychosis (almost certainly meaning BPD in my case), IBS, asthma.
Not diagnosed: anorexi, generalised anxiety (panic attacks), SPD, and a tendency to go in shock and pass out on rare occassions which has been investigated a number of times (EEG – checked for epilepsy) but with no result.
That’s a great idea, asking for the separate diagnosis. I assume there is less stigma around SPD than ASD. And if you primarily need accommodations around sensory issues, that works perfectly. I didn’t realize SPD can only be diagnosed by an OT, but that makes a lot of sense.
Do you think the shock/passing out could be related to overload?
ear plus = ear plugs. Just a typo, not a new fancy product;-)
🙂
No, it does not appear to be directly related to sensory overload (e.g. noisy surroundings do not make me feel like I am going to pass out).
SPD can only be diagnoses by an OT in Australia (I have been told), but I don’t know if that is the case in the US too.
Generally I don’t think people have a clue what SPD is, but it is much easier to explain than ASD. I guess because it is only one aspect, as opposed to trying to explain all the aspects and what apply when in my specific case (since everyone is different). And yes, it doesn’t carry the heavy load of stigma and popular stereotypes that an ASD. If some people guess that I have aspergers anyway based on real knowledge of it and my personality overall, that is fine with me… It is not essentially a secret. It is just to avoid the burden of feeling pressured to explain what it is to people who have no clue and potentially lots of fixed ideas about it, in a situation where I urgently need accommodations for SPD. such as simple things like a head set for phone conversations, being allowed to work with ear plus and headphones (if necessary), being allowed to move away from a flickering Christmas decoration or other constant visual distraction, get a quiet shielded place to work, being excused from participating in Christmas parties and similar things… which do not necessitate a disclosure of ASD because the SPD aspect overshadows the other issues anyway.
I have, in the past, gotten physically ill from general overload – not just sensory but also pushing myself too hard beyond the point of my body’s ability to tolerate . . . life. A good example is being on vacation, which paradoxically has often made me ill with things that were nonspecific and had no identifiable cause, only very obvious symptoms like high fever, passing out, severe headache, etc. That’s why I threw it out there as a possibility. I’ve since learned to recognize the signs and take preventive measures so things go much better now in general.
Yes, definitely… and especially multi-factor overload. E.g. being on holiday, having just moved and being in a new place, being on a plane or in transit for many hours (like Australia – Europe), a long period with high & increasing tension/anxiety/depression, panic attacks, social anxiety, medication, heat, stomach pain, alcohol, flu, even a bad cold… Flu is probably the strongest single factor. So much that I’m scared if there is a bad flu going around.
I guess I’m pretty unique in that I’ve never been diagnosed with anything apart from Asperger’s. If I hadn’t pushed so hard, I’m sure I could have been diagnosed with either SPD, ADD, OCD, borderline, GAD, social anxiety, bipolar, or depression though. And several of the “friends” I’ve talked to think any one of those fits me far better than ASD, depending on how I interact with them (like my ex who said that he was far more inconvenienced by my mood swings than by my lack of social skills, so obviously I had to be bipolar… *sigh*). It’s almost like nobody wants to accept the idea that a woman like me can be autistic.
But I do recognise a fair few traits in all of those comorbids. Like Askanaspergirl said, it’s in the overlap.
Nice of people who know you to diagnose you based on what inconveniences them most. /sarcasm
There is a lot of overlap in symptoms, which makes it challenging for both clinicians and those of us trying to figure out which labels might apply. Sometimes I think it would be much easier to simply get a “menu” of traits that affect us most rather than a single word diagnosis. It would certainly be more informative.
I am autistic/have asperger’s (self-diagnosed, seeking evaluation this month) but I have also received the diagnosis of depression and anxiety and my last doctor thought I had bi-polar disorder. they didn’t diagnose me officially because I was eighteen at the time but they treated me for it. I never felt it fit. I have also struggled with EDNOS and self-harm as well as mild asthma, orthostatic intolerance, and GI issues. I don’t know about some of the physical issues but have heard that GI issues especially are quite common among autistic women. I tend to see my own anxiety/depression issues as mostly stemming from problems with my thinking/social skills caused by my autism but my family has a history of mental illness and dependency that I think plays into things and makes me predisposed towards certain traits such as my tendency to turn to alcohol and sink into depressive/manic states.
There is a high rate of GI issues among autistic people and there’s still a lot of uncertainty about why that is. There’s a also a higher than average rate of certain mental illnesses (especially bipolar, anxiety disorders and schizophrenia) in families where autism is prevalent, so your observations there are right on.
Thank you for sharing your experiences. I had to Google orthostatic intolerance and so I learned something new today, in addition to meeting a reader.
This is an emotional subject for me. I’m also a bit shy of posting because I messed up last time. But someone was asking about fatigue so I will share this in case it helps her or anyone else. I would have liked to hear this 2 years ago. Hope its not too long or irrelevant.
My diagnoses:
• Dyslexia – very basic assessment to access services at college. Age 19
o I can do several things that dyslexics can’t and it didn’t explain the majority of my difficulties.
• Recurring chronic fatigue syndrome (CFS)– diagnosed age 21.
• Anxiety, depression, social anxiety – significant but not severe.
o I worked with a CBT therapist for a while during a bout of CFS. It works on the premise that negative thoughts are irrational and so you have to counter them with fact. It was somewhat helpful for breaking out of moods, but I didn’t yet understand my difficulties. It wasn’t faulty thinking that made me nervous of social interaction, it’s the fact that I’m rubbish at it and actually do frequently say and do things wrong. Similarly it isn’t faulty thinking making me feel lonely and down on myself, people do tell me I’m “difficult” and “challenging” and “hardwork”. Its usually qualified with some good features to explain why they still like me, but it adds up to a bad picture. Also I manage to upset/annoy people frequently and have no idea how. This isn’t faulty thinking, it is inability to fit into the world I live in.
• Dyspraxia, and some consistency with dyslexia, and attention difficulties – full ed psych assessment at university before starting an MSC. Age 28
o This was the “gateway” to further assessments and being taken seriously by the doctor.
• ADHD – diagnosed by psychiatrist. Age 28
o During the last two years I regularly met with the psychiatrist and tried taking stimulant medication. The medication messed me up in terms of CFS, however it helped me understand myself better and was I finally able to communicate my difficulties clearly enough for the doctor to suspect autism.
• Autism/asperger’s syndrome – have been referred for diagnostic screening and am waiting for an appointment. Age 30
o I have read extensively about the subject since the psychiatrist suggested autism. It came as a surprise but it fits. My partner, parents, and the one friend I told all think it fits me too and weren’t at all surprised. It explains things that aren’t covered by previous diagnoses, and why aspects of ADHD don’t fit me. It also describes parts of me I hadn’t realised were “abnormal”. To be honest I’m starting to get scared they won’t diagnose it because then what? It feels right, the descriptions fit – even down to my inability to understand and express what’s going on for me, and my ability to cover up how hard it is. I suppose I don’t want to just be failing for no reason, but I equally don’t want another incorrect diagnosis.
Conclusion
I think autism/asperger’s can supersede my other learning difficulty diagnoses. They may highlight specific aspects of my experience, but I think they can all be part of autism. I think the emotional difficulties are a direct result of living with an undiagnosed condition that makes it impossible for me to behave, think, and fit-in as other people do.
I think CFS is hugely affected by my (possible) autism. Compensating for the difficulties autism throws up uses a huge amount of energy every day. I am frequently stressed and upset too. Another way autism effects CFS is the coping strategies I used to use when I was well. For example I find changing routine difficult and going out stressful, so I would go out to university clubs everyday to make it easier to manage, then not have enough quiet time. Also I used to run because exercise makes me feel better but my poor body awareness meant I ran until I was dizzy and sick several times a week.
I have a had a similar ongoing struggle trying to understand myself.
A condition that is now thought to be ‘comorbid’ with Aspergers is Selective Mutism. I only discovered this was what it was called when I read something about it 20 years ago. I have struggled with it, and with other social and emotional problems, all my life.
Over a period of 20 years (since I found out what it was called), I read widely on SM and have looked for/asked for help – there is none. I have been in touch with people doing studies/have participated in studies on SM (as an adult). In Jan 2013 I found the only site to date that supports adults and young people with SM (ispeak.org.uk). Adults with the condition are supposed not to exist, since SM is seen as something that children can ‘conquer’ with help and support. I have never had any help or support for the condition, never been ‘diagnosed’ with SM as a child or an adult – I barely spoke at school for over ten years (it was at its worst in my teens), but was fine at home.
I always thought that all my difficulties were to do with SM, but since finding more up to date info about the condition – and that SM is a common ‘comorbidity’ of Asperger Syndrome, I realised that many (if not all!) of the difficulties I experience are on the autistic spectrum.
In trying to find out more about SM I had looked at autism in the past, but some of the criteria didn’t fit and I dismissed the possibility – until recently when I found out about women and girls and autism – and an explosion of recognition and realisation went off in my head.
In addition, there’s the the low ratio of males to females with SM – so is this again where girls and women on the spectrum have ended up?
I am now in the process of trying to get a diagnosis – this is really important to me, though like JK I am worried about the possibility of being misdiagnosed or not diagnosed.
I tend to think that SM is actually a feature of AS, rather than comorbid. Although people with AS generally start speaking at a typical age, that doesn’t mean the speech is fluid or reliable or consistent. And as you said, the overlap between SM and ASD is pretty much total overlap.
With regard to the gender gap, it may simply be that boys who have nonspeaking periods get a classical autism diagnosis, while girls who speak less get an SM diagnosis because again, girls are seen as less likely to be on the spectrum and SM is a good alternative explanation.
If you raise SM as part of your diagnostic process, it might be a good idea to bring it up in terms of low speech production or becoming nonspeaking at specific times rather than using the term selective mutism, so you don’t bias the person diagnosing you in that direction. Just a thought. I hope it goes well for you. It sounds like you’ve done a ton of research and are well prepared.
…yes I believe SM is a feature of AS – I have understood that recently on finding out more about AS and its effects on verbal expression. I have been struggling to understand this for so long. SM is dependent on situations, most people with SM struggle to communicate verbally in certain types of situations and at certain periods in their life – it fluctuates, gets better or worse depending on stress and life experience. Many people with SM seem to have difficulty with fluidity and consistency, and with many other aspects that fit with AS, as I have and as I’ve discovered from communications on an SM support site. There is so much that I could write about this…
That is what happens – SM is a good alternative explanation for girls, as most girls (of course) can not be autistic unless they are obviously very severely affected. I believe that in time – SM will be seen as a feature of AS.
Thanks for the good advice re diagnosis, I’ve read a lot of your posts and the comments on this site and they are packed with valuable information – they’ve really helped and are an amazing ongoing archive and study.
I see I was preaching to the choir here. 😀
Aren’t the comments here amazing? I’m constantly learning new things from commenters and I love how generous everyone is with their knowledge.
I’m glad you took the time and were brave enough to comment. I don’t remember what went wrong for you last time, but beyond technical mishaps, there’s really no wrong way to comment here, so please feel free to be yourself and say whatever you like.
I share your misgivings about CBT for aspects of ASD and for the exact reasons you describe. The CFS sounds really challenging and I can see how being autistic would make it much worse and harder to manage. I hope that you are able to get your assessment and that maybe opens up the door to finding other coping strategies down the road.
I’m pretty sure that all of my other diagnoses are a result of the lack of ASD diagnosis for such a long time. Social anxiety disorder and eating disorder both have to do with autism, and can be scrapped as far as I’m concerned. My eating is not disordered, I had lost my structure and routine and was depressed. Quite a different thing.
A large part of my depression (dysthymia) is caused by the troubles in life due to not knowing before. The diagnosis doesn’t change that, though. I have a general depressive streak in my personality, I think, and I don’t think it’ll go anytime soon.
That makes sense. Trying to work around sensory issues or simply not having the EF to eat regularly can both look like an eating disorder if the observer doesn’t know the cause of the irregular eating habits.
I’m sure my social anxiety is related to my autism: a lot of it is a consequence of having poor social skills and sensory processing problems. I’ve not having learned the rules well enough to always function competently in social situations. My depression is primarily caused by my gender dysphoria (with a side of relationship problems, happily resolved now that I’m out) which I do not believe is directly connected to autism. Although I believe that being autistic has made me much less constrained by stereotypical gender roles, I do not believe that it is responsible for my gender identity.
It’s great to hear that things are improving for you. It’s interesting that you say that your depression doesn’t feel connected to your autism. I’ve had some minor depression in the past and don’t feel it was connected to autism for me either. Anxiety on the other hand, feels closely intertwined.
I’m just finishing up a post about my recent jury duty experience and as I was writing I realized that I had almost no social anxiety around it and the main reason was that I gave myself permission to just be my autistic self. And I guess now I’ve spoiled the punchline of the post, but that experience feels like further proof that my social anxiety is related more to passing (and how bad I am at it) than anything else.
My diagnosis is ASD with Generalized Anxiety Disorder (GAD). I don’t feel like the GAD fits at all. I like how you said it…your anxiety doesn’t feel “disordered”. I feel the same. My anxiety is very much tied in with my ASD. In fact, the psychologist who wrote up my report said as much. She wrote, “It is likely that her GAD symptoms are facilitated by her feelings of confusion within the social world, her atypical sensory experiences, and the emotional flooding that can occur with these experiences, and her need for predictability in an unpredictable world.” BINGO. Nail on head. So why give me the anxiety disorder diagnosis at all? Don’t get it. Before I got my ASD diagnosis I was misdiagnosed with Bipolar II, which never fit me either. Most professionals really just are rubbish at diagnosing ASD correctly in females.
It doesn’t make a lot of sense to on the one hand acknowledge that your anxiety has a very real source and on the other hand call it disordered. Not all anxiety is disordered! Argh! Sorry, not yelling at you. Yelling with you, I guess. 🙂
One of the problems that I thought related to AS is that conversations don’t always make sense to me. It turns out that I really was missing parts of the dialogue. A pre-employment hearing test indicated that I have hearing loss. Yay! A straight forward, empirical diagnoses that can be alleviated mechanically!
That must have been a relief! It’s great that you found out and are able to take steps to compensate for your hearing loss. CAPD can be a feature of AS, but it’s also a good idea to rule out hearing loss as well.
Thank you for another thought-provoking post, it sparks a whole lot of different thoughts for me but for now I will just pick up on a couple of specific points.
There was an article in Medscape this week about a study showing benefits of probiotics in autism (don’t think I can link to it, only subscribers can open articles, but you can look for it yourself, free to subscribe). It was only using a mouse model of autism, but I know the have been many discussions about GI issues and autism, and the effects of diet.
M at theinvisiblestrings.com has recently posted a series about depression and Aspergers and the interaction/overlap/masking/magnifying of one by the other, there are some really valuable insights there.
One of the ways I have thought about the conundrum of pinning down a diagnosis, or coming to understand what exactly it is I am experiencing, is the shadow metaphor. I cast a shadow that appears to be a certain shape, but what exactly is casting that shadow, is it one discrete shape, or in fact a particular arrangement of factors that seen together appear as a clearly identifiable image. Is it ‘rabbit ears’ or just a familiar figure we recognise as such, cast by something entirely different?
I’ve seen the depression posts and they’re very interesting. Definitely worth checking out. Your shadow analogy is great – especially the idea that it could be one shadow cast by several overlapping objects.
Yes, I like analogies and metaphors like that, the trouble is knowing what to do with it. I am probably on multiple diagnostic borderlines, and don’t fit clearly in any one diagnostic box, which means I am too easily dismissed by the small number of people with whom I have begun to discuss this. The shadow, or equally the Venn diagram, possibly explains what I am beginning to understand about myself, but it is very hard to dissect a shadow.
That’s true. It can be so complicated to unpeel the layers and figure out which labels fit best. I don’t think I could have gotten a diagnosis ten years ago because I had a lot of other issues that were obscuring the root issue. Once I worked through those issues, the underlying stuff (autism) became more obvious. So perhaps it a matter of time, in part. The good news is that you’ve made a start on it!
Well I hope it’s good news, sometimes I just feel like I’m spinning my wheels, and wearing myself out in the process, trying to figure this all out. Thanks for the encouragement, and for this blog, I have gained a lot from reading your posts and information, and the section about diagnosis has been extremely helpful. The number of times I have lightbulb moments from reading what you have written has been part of keeping me looking seriously in this direction. So thank you for the time and energy you give to this, and your willingness to share your own personal challenges as well as insights, it is so helpful to others.
You’re very welcome! Thank you for commenting and sharing your experiences.
I hope in the end it will be good news for you. The adjustment period–having to reconfigure our self-concept–is really hard work. But I found that after about the first 6 months, things started to fall into place for me and are continuing to do so even now. It’s very much a process and sometimes a slow one.
I only have the diagnosis of Aspergers, but I strongly present the ADHD and Obsessive Cumpulsive aspects which come along within my Asperger’s diagnosis. The position my therapist has taken is that if it doesn’t seriously interefere with my life and it doesn’t bother me too much, it’s doesn’t qualify as a disorder and doesn’t need a separate diagnosis.
I like your clinicians way of looking at it! There is a lot of overlap between ADHD and OCD traits with ASD traits. When I went for my evaluation, the clinician suspected ADHD in addition to or instead of ASD based on my initial interview. And there are a lot of people who have both or all three at diagnosable levels.
Althoght I don’t identify as a women (my body is female by any biological parameter, but I identify as Genderqueer), I want to answer too. Before the autism diagnosis – about 6 monthes ago (which I am not even so sure if is true to me or not) I was diagnosed with ADD. It helped me to get to do my tests for the university in a room alone, on a real table and not the awful chair-with-tiny-side-table from which all my stuff was falling.
But the Ritalin didn’t helped at all, except helping me to stay awake. Latly I started to finly treatment for my depression/dystimia…So I do have several comorbidities… Not to mention my general wierdness and other quolities out of the hetheronorma. :-p
I have ASD, with CoMorbid occurring OCD, PTSD, Major Depressive Disorder, Anxiety, Panic Disorder, ADHD, Self harm/Injury, Epilepsy and Suicidal Ideation. To me while they are all CoMorbids, I view it all as part of my autism. Sensory processing was just thrown in with my ASD, instead of being a separate issue. I do not know anyone on the spectrum who is without anxiety so I don’t understand why some of these things are not just a part of autism either as a behavior like self injury or as part of being autistic like having anxiety. It’s always changing and I take medication for all of these things along with Risperidol for autism. I am pretty sure I ended up with all the comorbids minus Tourette’s syndrome and that’s iffy as when and where I stim at times I certainly not by my choice neither is choosing it if I am really stressed or upset, so who knows. I do know that all of the above can set off a chain reaction. I also know people see me and think she can’t have autism she is covered in tattoos, wears make up and dyes her hair, laugh. I instead get looked at like I must be really high functioning and I think to myself when someone says that to me ya I am really high functioning as I am hitting my head against the wall, or I can’t figure out the basic steps in order to do the simplest of things, or how about when I will not eat because I forget for days or when I refuse to get dressed because I can’t deal with how clothes feel or I take something so literally in a social situation someone has to explain to me what the hell the other person really meant, or when I am asked what’s wrong and I have no idea and no words explain it yup that’s super high functioning alright just like a stim toy on the bus! Laugh, I don’t even get bothered by it anymore all I ca do is laugh!