Should I tell ? Would mentioning a possible misdiagnosis or comorbid Dx of Autism be a problem?

Gatha

Learning
I've had people poking around in my head for decades and until very recently the consensus was that I have CPTSD.

I have a friend who has ADHD so I did a bit of research and saw a Youtube about autism in adults and had a huge omg moment. Loads more research and lots of boxes ticked. I'd like to ask my GP to refer me for assessment but I have some EMDR coming up and I really don't know if throwing autism into the equation would help or hinder. Yes I have cptsd and it needs fixing. How does autism fit? The thing is my trauma defines who I am, how I think and communicate.. or so I thought. Many of my peculiarities, dislikes and avoidances, that I previously attributed to trauma fit well with what I have learned about autism.

Should I mention it? I'm trying to get something written down to take to my GP but it's not easy. I know exactly what I want to say and would love to actually chat with someone about it. Typing messes my head as I end up re-reading sentences over and over.

Any thoughts ?
 

Charbella

MyPTSD Pro
Have you read The Body Keeps the Score? I only ask because I’ve been diagnosed with PTSD but later with a different doc I was diagnosed with ADHD, him not knowing the PTSD diagnosis, mainly because I’d forgotten and I don’t think I really agreed with it. After reading the book and being diagnosed again PTSD I found that a lot of trauma responses mimic other things including ADHD which shares some traits of ASD. I check quite a few ASD boxes but I wouldn’t agree with the diagnosis either. ADHD I have no problems accepting, it runs in my family…however so does trauma. Just information in case it helps.
 

joeylittle

Administrator
The thing is my trauma defines who I am, how I think and communicate.. or so I thought. Many of my peculiarities, dislikes and avoidances, that I previously attributed to trauma fit well with what I have learned about autism.
I think one of the toughest things about addressing mental health is that there's a great deal of overlap between disorders, and no completely empirical way to arrive at a definitive answer. My own way through that is to try and focus on what is most real and immediate for me - the things that require the least amount of hypothesis to understand.

When you know you've experienced significant trauma, and that those memories are 'stuck' in a half past/half present place - then, there's a clear need to work through those events.
I'd like to ask my GP to refer me for assessment but I have some EMDR coming up and I really don't know if throwing autism into the equation would help or hinder.
My strong suggestion would be to not focus energy towards both things at the same time. It will probably be instructive for you to begin that EMDR work, see how it changes your relationship to the trauma. You're dealing with CPTSD, so I'm guessing your narrative has multiple traumatic events happening over time...

Do you feel confident in your trauma therapist and their approach to the EMDR work they will be doing with you? That's important.

If you do - I think it'd be best to go down that road further. Anything you learn will be useful when/if you do consult a neuropsychologist eventually (re: autism). And trying to investigate both things at once will likely compromise your focus on the EMDR, and also add a layer of complication to the neuropsych evaluation process, just because there will be things that MAY be attributed to trauma, but you haven't yet tried to address the trauma; hard for a clinician to have a clear path through an assessment.

Just my own thoughts, I'm not a doctor and don't know your trauma narrative. It's a really great question though, and I'm looking forward to more responses on this thread.
 
As Charbella states, many systems may well over lap with multiple diagnosis, so it's not unrealistic to think there maybe multiple diagnosis for you. I also agree that dealing with too much at one time maybe really difficult and unhelpful, at least thats how I feel. However, (and I'm in no way an expert in either diagnosis so this is simply my gut reaction), I wonder if being autistic would alter the emdr process? If so, maybe T would want to amend their strategy for treatment? Maybe this would be something to discuss with T prior to starting treatment? It may well be that a diagnosis of autism wouldn't change the treatment at all and therefore I'd imagine treating your cptsd symptoms would firstly help your healing and coping with your trauma and overall quality of life. If symptoms of autism are still apparent, my guess is the assessment could be easier/more accurate? On the other hand, if treatment would need to be altered following a confirmation of an autism diagnosis, then T may suggest getting that first before starting treatment to ensure you get the most benefit from it?
As I say, I'm in no way an expert, it's just my initial thoughts, but I often think "the more you know", so I'd be inclined to ask the question first from health professionals to help make an informed decision. Let us know how you get on xxx
 

Weemie

MyPTSD Pro
I'm autistic as well and while it helps to have an understanding of why my life looks as it does, trauma is also something that stunts our social growth and treatment for trauma doesn't look much different between autistic and neurotypical individuals. You may discover specific things that work or don't work for you individually and that might be relevant to autism or not, but you won't know that until it happens either way.

As an adult there was not a whole lot of "autism treatment" that resembled anything other than quackery, and it was mostly about learning dialectics and becoming comfortable with my differences. For me diagnosis was mostly about semantics (saying "I'm autistic" vs "I suspect I have autism"). If that's important to you (it was to me) then diagnosis probably worthwhile.

But the diagnosis itself didn't actually change my experiences and I have other issues where "I have traits of XYZ, which were confirmed by my therapist but not formally diagnosed" is how I have to frame it, and yet functionally, my life wouldn't be much different if I were able to say "I have XYZ" other than, like, how many words I have to use.
 

arfie

MyPTSD Pro
I really don't know if throwing autism into the equation would help or hinder. Yes I have cptsd and it needs fixing. How does autism fit?

i have had several therapists who are utterly convinced i am high functioning autistic. i started kindergarten in 1959 as, "retarded." those same therapists used that as evidence that i've worked my way through the dysfunctions of low-functioning autism on my own instincts. no one doubts that i have the survival instincts of a cockroach.

i discussed the possibility often with those same therapists but declined to pursue a formal dx. as @Weemie mentioned, there is no real therapy available down that line and the formal dx is about as useful as the current running dx that i am old and ugly.

my current approach to therapy remains symptom oriented. i don't much care what name we call ^it^. whatever it takes to make **my** life work in **your** head, my friend. personally, i think in pictures and sensory input, anyway. translating between spoken languages is child's play next to translating pictures and sensory input to words.

addendum
a DO see a splendid social benefit to pursuing the formal dx. the creative work being done within the autism crowd is nothing shy of spectacular. i especially love the philosophy of, "don't cure it. train it."
 
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Gatha

Learning
I think one of the toughest things about addressing mental health is that there's a great deal of overlap between disorders, and no completely empirical way to arrive at a definitive answer. My own way through that is to try and focus on what is most real and immediate for me - the things that require the least amount of hypothesis to understand.

When you know you've experienced significant trauma, and that those memories are 'stuck' in a half past/half present place - then, there's a clear need to work through those events.

My strong suggestion would be to not focus energy towards both things at the same time. It will probably be instructive for you to begin that EMDR work, see how it changes your relationship to the trauma. You're dealing with CPTSD, so I'm guessing your narrative has multiple traumatic events happening over time...

Do you feel confident in your trauma therapist and their approach to the EMDR work they will be doing with you? That's important.

If you do - I think it'd be best to go down that road further. Anything you learn will be useful when/if you do consult a neuropsychologist eventually (re: autism). And trying to investigate both things at once will likely compromise your focus on the EMDR, and also add a layer of complication to the neuropsych evaluation process, just because there will be things that MAY be attributed to trauma, but you haven't yet tried to address the trauma; hard for a clinician to have a clear path through an assessment.

Just my own thoughts, I'm not a doctor and don't know your trauma narrative. It's a really great question though, and I'm looking forward to more responses on this thread.
I've had EMDR privately before. We identified the trauma events and spent some time on rethinking it. tbh, I never really thought that my trauma was traumatic enough to have such a profound effect on me. I didn't go any further. Back for another try 8 years later.

As Charbella states, many systems may well over lap with multiple diagnosis, so it's not unrealistic to think there maybe multiple diagnosis for you. I also agree that dealing with too much at one time maybe really difficult and unhelpful, at least thats how I feel. However, (and I'm in no way an expert in either diagnosis so this is simply my gut reaction), I wonder if being autistic would alter the emdr process? If so, maybe T would want to amend their strategy for treatment? Maybe this would be something to discuss with T prior to starting treatment? It may well be that a diagnosis of autism wouldn't change the treatment at all and therefore I'd imagine treating your cptsd symptoms would firstly help your healing and coping with your trauma and overall quality of life. If symptoms of autism are still apparent, my guess is the assessment could be easier/more accurate? On the other hand, if treatment would need to be altered following a confirmation of an autism diagnosis, then T may suggest getting that first before starting treatment to ensure you get the most benefit from it?
As I say, I'm in no way an expert, it's just my initial thoughts, but I often think "the more you know", so I'd be inclined to ask the question first from health professionals to help make an informed decision. Let us know how you get on xxx
Its hard to describe but an ASD diagnosis would help resolve a lot of my shame and explain why my life has panned out the way it has. It would also help me to learn how to manage being me as someone with ASD. All previous attempts have associated my mental health problems with trauma. Yes it happened and yes it continues to have an effect. I'd probably say that living for 10 years in an isolated farmhouse with a narcissistic dentist has been much more detrimental.
 

Charbella

MyPTSD Pro
@Gatha
It sounds like it’s important to you which means you should. There are a lot of things you can’t do anything about, getting a diagnosis is doable. I hope you get the answers that help you in your journey.
 

Gatha

Learning
I'm autistic as well and while it helps to have an understanding of why my life looks as it does, trauma is also something that stunts our social growth and treatment for trauma doesn't look much different between autistic and neurotypical individuals. You may discover specific things that work or don't work for you individually and that might be relevant to autism or not, but you won't know that until it happens either way.

As an adult there was not a whole lot of "autism treatment" that resembled anything other than quackery, and it was mostly about learning dialectics and becoming comfortable with my differences. For me diagnosis was mostly about semantics (saying "I'm autistic" vs "I suspect I have autism"). If that's important to you (it was to me) then diagnosis probably worthwhile.

But the diagnosis itself didn't actually change my experiences and I have other issues where "I have traits of XYZ, which were confirmed by my therapist but not formally diagnosed" is how I have to frame it, and yet functionally, my life wouldn't be much different if I were able to say "I have XYZ" other than, like, how many words I have to use.
I know my triggers and most of them relate well with autistic traits. I've been trying for years to overcome this and I'm exhausted as I push myself constantly to interact with people and it's horrible. A positive diagnosis would make me more accepting of my social failures and allow me to concentrate on living on my terms rather than trying to be 'normal' and berating myself when I'm not.

i have had several therapists who are utterly convinced i am high functioning autistic. i started kindergarten in 1959 as, "retarded." those same therapists used that as evidence that i've worked my way through the dysfunctions of low-functioning autism on my own instincts. no one doubts that i have the survival instincts of a cockroach.

i discussed the possibility often with those same therapists but declined to pursue a formal dx. as @Weemie mentioned, there is no real therapy available down that line and the formal dx is about as useful as the current running dx that i am old and ugly.

my current approach to therapy remains symptom oriented. i don't much care what name we call ^it^. whatever it takes to make **my** life work in **your** head, my friend. personally, i think in pictures and sensory input, anyway. translating between spoken languages is child's play next to translating pictures and sensory input to words.

addendum
a DO see a splendid social benefit to pursuing the formal dx. the creative work being done within the autism crowd is nothing shy of spectacular. i especially love the philosophy of, "don't cure it. train it."
I really don't need any formal proof. I just don't want to jump through the same hoops again. I might be being a little paranoid here but I was recently looking through old medical records (nothing connected with MH) and I came across a letter from a Psy to my gp (my first assessment from decades ago) and it kind of feels like his report has set a narrative for everything that followed. With some undiagnosed ASD glasses on things look very different !
 

arfie

MyPTSD Pro
I just don't want to jump through the same hoops again.

amen, i say unto thee, amen. those hoops do get weary and the results are seldom helpful.

still. . . an important part of my own trail of tears is to keep shaking those trees until the right nut falls out. at worst, you could learn a thing or three by letting yourself gaze a while through those ASD glasses. different perspectives can be most helpful.
 

joeylittle

Administrator
Its hard to describe but an ASD diagnosis would help resolve a lot of my shame and explain why my life has panned out the way it has. It would also help me to learn how to manage being me as someone with ASD. All previous attempts have associated my mental health problems with trauma.
You're making a lot of sense. What do you think about pausing the current EMDR work to prioritize getting some clinical clarity on whether or not you're dealing with ASD?

I just think trying too many things at once can make it hard to tell what's what.
 

Teasel

MyPTSD Pro
Its hard to describe but an ASD diagnosis would help resolve a lot of my shame and explain why my life has panned out the way it has. It would also help me to learn how to manage being me as someone with ASD.
Just to say I get this.

The 2 most important realisations in my life have been realising I have PTSD, and realising I am autistic and have ADHD.

The latter has greatly reduced the shame I've felt about being different and not fitting in. And I am able to replace that with self compassion and making adjustments to help me cope better. So I think you're right in wanting to explore this.
 
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