PDA Misdiagnoses

My animation about PDA being misdiagnosed as borderline personality disorder and other conditions. Many thanks to Mark Maitreya, Jillian Cumming, Jade Burrell of Mind Our Minds and JR (JR: I want to at least partially name you for the invaluable job you did in giving me constructive criticism during the production process!) And, truly, thank you to everyone who's given positive feedback for my Sally Cat work. I have massive social anxiety with my PDA and without your feedback I'd not have had the confidence to keep producing.

[@Jokaanan]

I was briefly misdiagnosed with bipolar II as a teenager and it's haunted me ever since, despite multiple doctors confirming I don't have it. It hugely triggered my anxiety and self-doubt to be diagnosed with a psychotic spectrum disorder. The times that I was considered "hypomanic" were the times when I was free from anxious demand! I was simply expressing my courageous, ambitious, imaginative self with ASD-style absolute honesty and ADHD-style hyperactivity. But I was told that state of mind was dangerous and could become psychosis. I was told that "being too happy sometimes" was the reason why I was depressed other times. You can imagine what this did for my demand avoidance! I became terrified of happiness! Happiness, the harbinger of doom. 🤣 I was told that I would only be stable when I could stay in a "middle" state, but since I'm not bipolar the only way I could understand this was to imagine a sort of oatmeal-grey robot zone which ofc I didn't want anything to do with. I would take reluctant steps towards the grey zone but mostly I threw myself into my emotions like someone binge-eating cake, believing that the only way I could retain my autonomy was by refusing to control myself, at the same time losing all hope of autonomy because I did honestly believe what they said about never being stable. All of that happening during a key time of brain development has affected the way I perceive my own emotions and locus of control. I continue to worry that maybe I'm secretly just psychotic and have everyone convinced that I'm not. I continue to have massive social anxiety around any sort of faux pas or coming off as "too much" because maybe people will think I'm disconnected from reality (and what if I really am??). I take forever to write emails because I want to express to the other person how much I appreciate their time & effort, or say something funny to brighten their day, and then I feel like they're going to think I'm crazy or attention-seeking because I said that and I delete it all and then I feel awful because I'm erasing myself from the world. Honestly everything I write (except for this comment) is obsessively checked to avoid sounding crazy, which becomes quite a time/cognition burden because a lot of the things I naturally want to say are bold or colorful! I continue to feel anticipatory anxiety whenever I think about how to improve my life and productivity, because I'm afraid my progress would be "fake", i.e. just an unsustainable manic episode; and when I am doing well I get anxious that maybe I'm just manic and it's all going to come crashing down soon and I'm going to be in a deep depression. This, again, despite nobody having told me I'm bipolar for 15 years. There are social cognition deficits observed in bipolar subjects, even remitted bipolar. I suspect a *lot* of people diagnosed with bipolar, especially bipolar II, might have high-functioning ASD instead. I can just hear my psychology professors saying "well maybe we need to re-conceptualize bipolar as sharing underlying features with autism" but that's not good enough. Conflating bipolar with autism is a problem because bipolar is psychosis-related. The difference is crucial: in psychosis and delusion, you're weird because you're no longer yourself; you have lost touch with reality. I know people who actually experience mania and it's scary for them! There's a loss of control, like someone else took over their body. In autism, you're weird because you're *being* yourself; *you* process and communicate reality differently. You're not going to get closer to the truth by monitoring yourself for divergence from the norm. For people with PDA this is a particularly key distinction because of the need for autonomy. If you manage to convince someone with PDA to believe that their traits are not truly *them*, and represent a loss of control, they are going to doubly turn their demand avoidance inward against this foreign influence that's hiding somewhere in their body - whether it's the loud weirdo with tics and big dreams, or the monotonous, functional robot that you are demanding they submit to, or both. IMO we should rarely be diagnosing adolescents with bipolar in the first place. Mania experiences are common in normal adolescent populations! It actually seems more reliable to ID bipolar in prepubertal children, w/ reference to family history.

[@boxcars10]

This is such a simple, straightforward video. I absolutely love it. It's beyond frustrating how much damage the medical community can do with blatant ignorance. I was diagnosed with BPD, bipolar 1, and other things. Because of that, I was put on strong doses of antipsychotics. After becoming fed up and switching to an amazing psychiatrist, I was put on an antidepressant and Ritalin -- two drugs that have the opposite effect of antipsychotics. I found out at age 18 that I actually have ADHD and am autistic. After research a couple of months ago, I realized that I have PDA, not Asperger's. I'm about to be 22 in a couple of months. There needs to be more awareness of PDA so that others don't have to jump through the same damaging hoops that I did.

[@Babyzaftig]

THANK YOU for making this, Sally Cat! Poignant information and well presented. (I liked the animation too!)

[@philuin9594]

I have had the bpd, label and bipolar label in fact I've had more labels than judith Chalmers suitcase! They drove me mad in the end had full blown psychotic episode with the stress anger and emotional turmoil I was under!

[@jimwilliams3816]

This sort of problem is sort of cooked into the system, since unlike many physical maladies, much of the mental health diagnostic criteria is based on theories. And then actual diagnosis adds another layer of interpretation. I am immediately suspicious of any mental health provider who thinks they have it all down pat. Some of that comes from my PDA traits I think, but I also think I'm not altogether wrong. The biggest reason I'd like a formal diagnosis (beyond depression and anxiety) is identifying what meds work best, and having the ability to cite a disorder to people in the hope that they understand that some things are harder for me than neurotypicals. I'm finding the most useful thing are these kinds of videos and comments, which often offer much more nuanced views of neurodivergent characteristics than the DSM. If I read official criteria, I find myself doubting if that's me. But Sally Cat's videos, and some descriptions from Tony Attwood, have been astonishing views of what the inside of my head is like, and answered questions about why my brain does certain things that have confused me for many decades. So think you, Sally! Love your devil drawing. That one is like me. :(

[@annalieff-saxby568]

Very interesting. I have a BPD diagnosis, but also recognise autistic traits in myself. Thanks. More please!

[@domm1341]

This has been really helpful. Thank you for putting it together.

[@Parrotting]

How frustrating! I have experience helping people close to me, one with bpd and 2 with pda And they are completely different things!!! It seems they only diagnose on a surface level. The NHS are awful. We need a complete overhaul of mental health and SEN services.

[@smievil]

I could imagine that some diagnoses are written based on what the psychiatrists sees or observes rather than what the patient feels or believes. things might appear similar based on how it looks despite being very different at a more basic level

[@RachelGerrard]

This is awesome!

[@benedictjephcote6815]

Great points, very well made. Diagnoses are sometimes made after only a short time of review I find. If we compare this to people who are nowadays able to spend hours conversing (often online) with others with similar conditions and making notes on the decades of life they have as evidence. With mental health, I think it's important that the individual's own thoughts on their diagnosis is given weight. As that person has spent their whole life knowing themself. Wouldn't it make sense for specialists to work together with the individual on discussing diagnoses before together agreeing on one?

[@fedoramcclaren4294]

Oh my goodness, yes!!!

[@carlystewart8166]

This video is great.Im going through my diagnosis at the moment.Its such a battle and i believe the people ive seen dont know what pda is let alone Autism in females.Id love to talk to you Sally cat via Facebook messanger or zoom somtime.We have briefly crossed paths online when i have defended your work.😊X

[@cheeks6310]

Sally Cat, I hadn't realised the book would be in conversational style. I can't read out of my left eye. Is it likely to come out in audio? I like to think we are more than labels but the diagnosis is a useful map. I was also diagnosed with bpd, my friend thinks I also have (the non hyper kind) adhd. Easily overwhelmed, sensitive to noise, easily distracted, poor concentration but then I'm also pre menopausal. Also, did you know bpd,ptsd,cptsd,adhd all have similar symptoms. I also note other things that can cause issues such as boundary setting and codependency. There are great books on both ie Codependency Anonymous big blue book and Boundaries learning when to say yes or no is fantastic and helps me a lot I want to read your book but keep avoiding it. Is there likely to be a narrated version?

[@annaa8322]

are you based in the USA? the reason i am asking is that i am getting (hopefully) a diagnosis in the UK and wonder how likely are they to misdiagnose me

[@SallyCat123]

Anna I'm in the UK, PDA diagnosis here is currently postcode lottery. The NHS can diagnose it as a description of ASD, but many centres fail to understand/implement this. Good luck x

[@boxcars10]

I'm a PDAer in the US, where information and awareness are still far more scarce than in the UK. That isn't to undermine the severe lack of information over in the UK, though. As of writing this in August 2019, I believe that I will never see a diagnosis of PDA in my lifetime. I hope that that changes for future generations.

[@fedoramcclaren4294]

@@boxcars10 oh man...I am going through the same thing!!! I am wondering why this isn't registered in the DSM-5 manual by now!!! It is so tough living with this because A: it is tough to explain without people telling you you are making it up B: much of it will be a misdiagnosis based on the lack of this being in the manual.

[@jsim26787]

I don’t want this to come off as invalidating, but just being someone who knows a lot about bpd, and also I struggle to not say something I think should be said if that makes any sense? It’s not a good trait I know, but I feel like if there’s anywhere I can be myself and voice my thoughts it should be here. The wording the psychiatrists used with Jilian was incorrect, avoidant borderline personality disorder in itself is not a diagnosis, and it’s not in the dsm, but it comes from research done on the different sub types of bpd. I’m guessing this is what they meant, but they should have clarified and given her the information on how it’s a subtype, it’s not considered a formal diagnosis, but the research has shown promising things in terms of helping people with bpd access the treatment that will work more specifically for them. That being said, I’m not claiming that she does have bpd or anything like that, I’m not a doctor, I’ve just been diagnosed with bpd, and I’ve done a lot of looking into it. I’m currently seeking a diagnosis of autism more specifically the pda profile, I don’t know if I was misdiagnosed with bpd or if it’s just both. That’s the other thing, the new leading theory on how bpd develops is someone with neurodivergence who didn’t receive the proper support growing up. So in my mind, it makes a lot of sense for both to be able to be present in an autistic adult, especially if they didn’t receive a diagnosis until adult hood. I think statistics echo this, in both you’re more likely to also have the other, but I feel like that honestly goes for any mental health disorder so take that with a grain of salt. I just wanted to put this here because it’s very possible for someone out there to have this combination and I just hope this wouldn’t confuse them and then only receive help for one and not both.

[@cassandradavies7956]

It is so awful that this is happening.

[@richardautism]

The issue here Sally Cat is that no-one knows what PDA is and its nosology is contested, so saying PDA is a form of autism is misrepresenting the current status of PDA. Just with the incident of Avoidant Borderline Personality Disorder, it being argued PDA is a made up diagnosis and there are good grounds to this due the unstable diagnostic criteria. It has been noted that PDA is a false diagnosis of autism (Hughes 2015). I am currently at 23 different medical ontologies of PDA, see here for the current published list: www.researchgate.net/publication/329001126_An_Interest_Based_Account_Monotropism_theory_explanation_of_anxiety_in_Autism_a_Demand_Avoidance_Phenomenon_discussion

[@denisekriel5892]

When you have been diagnosed with so many other conditions but they don't really fit and eventually get a PDA diagnosis believe me it does not feel made up. It made everything fall into place when my daughter was diagnosed with it at 11

[@jimwilliams3816]

I’m anticipating that, in the next hundred years or so, advances in neuroscience will shift mental health diagnosis much further out of the realm of observation and theory, and push it much more into the realm of neurological function. I rather expect that blanket diagnoses will change radically, and in many cases may break into smaller parts. Given the complexities of physiology, I’m sure we’ll still be a long ways from full understanding, but I’d be surprised if the way things are currently understood aren’t looked back on as somewhat archaic. PDA will be subject to those forces, and so will other theoretical models of psychology. All are an attempt to describe what we do not fully understand. Speaking only for myself, i can readily accept that some of the models that feel most correct to me are imperfect at best. What is important to me is for the practitioners of psychology and psychiatry to recognize this as well. The field has a sufficient history of missteps that a considerable amount of humility is called for, and what frustrates many of us is the extent to which many practitioners are inappropriately confident that they know the score. “We’re trying to figure this stuff out, and this is our best guess” is as much as anyone should really say. Whether PDA is a profile of autism or not is a big question for me. My father was almost certainly autistic, but my PDA traits came from my mother, and while I certainly share her persistent fear response, overactive fight of flight, and executive functioning and emotional regulation issues, I’m not sure if she was autistic. I can make a case for it, but I am often inclined to think that PDA might be a common co-occurring condition, like ADHD, rather than an profile of autism. But...I do not know. What I will say is that the persistent fear/autonomy model makes more sense to me than other, more behavioral models. My feeling is that PDA behavior is a likely outcome of persistent fear response and non hierarchical sensibilities.

[@TheGenbox2]

Re eye contact and autism: eye contact can be learnt - and over extended eye contact can also be symptomatic of autism. Professionals need fuller training re these Conditions, and stop just using 'headliner' symptoms as there sole guidelines.

[@BMWI-gk9wh]

A diagnosis isn't really a true diagnosis

[@SilentEcho96]

LOve you they done this to my diagnosis diagnoses 2004 re diagnosed 2014 and destroyed in NW CMHT AND S.S IN 2015. stiull isolated cant go out and now a FAKE PANDEMIC

[@heathercush5096]

there is new disorder born every second in this society. which one do you have?

[@kdelka81]

Yea, more invalidation that only further traumatizes people...do the world a favor, stay off the internet and keep your opinions to yourself.

[@fedoramcclaren4294]

....... Well, there are so many things mentally that many people go through, so if there can be something to describe it so that folks such as yourself can comprehend what that individual is going through.