Undiagnosed ASD, CPTSD, and 12 step recovery

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somesortofvariant
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01 May 2021, 3:44 pm

Hello all,

I am still coming to grips with what I believe is my undiagnosed ASD. I used to attend Adult Children of Alcoholics meetings online, but I found my tendency to mimic the behavior and feelings of those I am around didn't lead to positive results after the meetings. I would act more like a selfish jerk after attending the meetings than when I went in, and I think that may be related to my ASD and my constant masking and taking on the behaviors/energies/emotions of those I am around.

I know I need some sort of recovery process like ACOA, and it is becoming more and more evident that I need a fellow traveler/sponsor to have that daily support and motivation. I am in therapy, but 45 min weekly meetings just ain't cutting it at the moment.

So I am wondering, does anyone know of a 12 step meeting for neurodivergent folk? I would even attend AA or NA meetings because sometimes it really seems that I act just like a desperate, drug-addicted person who is just looking out for themselves. (Although alcohol and drugs aren't the issue.....it is just the para-alchoholic/dysfunctional behavior to which I was deeply acculturated as a child.)

I can't tell which behavioral issues are from CPTSD and which are from ASD. Either way, I have been on the brink of destroying my family (20 year marriage and 2 kids!) for the past 2 years. I can be intellectually aware of how I can change behavior to make things better, and I will want to change my behavior when I am sitting alone or in therapy...yet, it seems that it will all fade away when it comes to real world action and interaction.

I am also wondering if anyone out there feels the same or has had a similar experience. Any advice? Words of wisdom?

Any fellow travelers out there?



ThisTimelessMoment
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01 May 2021, 9:03 pm

I have found the 12 step program CODA (Co-dependants Anonymous) very useful. It has taught me a lot about managing my boundaries. NA and AA often seem rather punitive and focussed simply on being sober. I've met many people who have managed the sober part but are still not happy.

I am also in the situation of trying to work out which problems are ASD and which is CPTSD. The first may be fairly set but the second I can do something about. It is all very interconnected though.

A core issue of mine is that I went into a freeze response as a very young child (multiple instances of believing I wouldn't survive). Connected with this is a "decision" to give up. My life has been plagued by a narrative or belief of "I can't ". Now I have realised my autism, I'm trying to see what is actual ASD issues that I need to accept as me, and what is my belief that something is impossible for me. I find this very confusing.

Co-Dependancy is about a loss of self. It seems to me to be the issue underlying all addiction. It's a confusing term that took me a LONG time to grasp. It comes from describing the behaviour of the partners of alcoholics, who enable the addict.

I get what you mean about mimicking others at meetings. I found for in person meetings it was best to look at the floor while I spoke so I wasn't doing some kind of "performance" for the group. The most powerful part of it for me was once I understood that any shame I feel about an issue literally vanishes when I put it in front of the group.

Sorry this is rambling. It's late and I can't sleep!


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IsabellaLinton
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01 May 2021, 11:03 pm

Hi and welcome to you both. I'm autistic and diagnosed CPTSD so I'll be following this thread, and I hope others will be able to shed light on the topic. I grew up around many alcoholic adults in a very dysfunctional extended family where alcohol was a norm and I was shunned for being an uptight or anxious child. I later had two longterm relationships with alcoholics / addicts, and I'm just starting to realise how much of an impact this all had on my development. I went to one Al-Anon Family Group about 20 years ago regarding my partner, but unfortunately he crashed the meeting and threatened me not to go back. I don't even remember the meeting itself because I was so stressed by what occurred.

I've been in trauma therapy for almost 12 years regarding a different matter, but I've never done 12-step or much therapy related to others' alcoholism.

I look forward to reading this thread as it grows.

Hugs to you both.



autisticelders
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02 May 2021, 5:11 am

oh boy, this has been my life's work. Surviving and learning how to have a healthy life as the child of an explosive alcoholic father and an abusive autistic mother. Bad family patterns, deeply embeded survival coping mechanisms, you name it. I have CPTSD, and needed desperately to learn healthy behavior patterns to replace the old unhealthy ways. I could not do it alone, and did not know about my autism until very late in life (age 65 I began to suspect and diagnosed finally at 68, I will be 70 this year). Ok, that's the background.

I had to have professional help because the social aspects of alanon meetings left me with so much anxiety. I simply could not do the relationship parts of the 12 step plans because I was not equipped with the basic "tools" either mentally or neurologically, or in every day practice of having a healthy life of any sort. Broken but over the years learned a lot that has helped.

Until I learned about my own autism and my mother's I blamed everything on the alcohol. Now I have a depth of understanding that was not possible until I saw how the autism was working against things behind the scenes and nobody knew.


Each of us has to find our own way, but the thing that probably helped me the most, once I learned about typical behavior patterns in alcoholic homes, was to get new tools. I learned how to communicate in healthier ways. I got therapy that taught me how to say no, how to spot aggression and intimidation, learned to spot manipulative behavior of all sorts and how to defend myself against it.

I learned that my needs and feelings were just as important as anybody's, that my ideas, thoughts, and feelings were valid and that I was worthy of respect, worthy of self care, worthy of being my own person instead of a tool to be used and abused.

I had to have so much of this explained to me, and pointed out by the therapist because my anxiety and trauma and my autism did not let me figure it out on my own. NTs might be able to work some of that stuff out on their own by group networks and peer interactions, but it did not work for autistic (even not knowing about that) me.

Therapy was so very difficult, so many scary emotions and struggles to sort. Getting the tools I needed to live a healthier life through therapy was the best thing I ever did.

More than just picking at the wounds and re-living those old hurts, I needed constructive "how to" information about family dynamics, healthy choices, communication, expectations, and I needed detailed explanations about it all.

One thing we used in therapy was a book called "When I say NO I feel Guilty" by Manuel J Smith. I am not a talker or a visual person, I am a reader and a writer for my most effective learning and communication. Having very poor visual and audio processing added to my poor understanding of my world. Reading the book and practicing the things in it helped me more than anything else I have found or done since. Therapy and that book saved my life and my sanity.
I am not saying it will work for you, but it sure as heck helped me.

One day after therapy I realized that I was doing better and that I had begun to understand I had choices in the way that I could respond to other people's behavior, that I was not locked into only one way to respond (obedience, compliance,appeasement). It was as if the weight of the world had been lifted off me. I hope you can find that feeling of freedom and potential too.

Best wishes. Don't stop trying, keep looking for things that might work for you. Knowing about autism and how it had its work behind the scenes would have helped me at the time, but it still gave me the chance to say I am a survivor and have found a better life. Don't give up, you are worthy of happiness, worthy of peace, worthy of respect, worthy of care.


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somesortofvariant
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03 May 2021, 5:53 am

I am so grateful for all the thoughtful responses! I do hope to keep this thread going. It really does help to hear from others, knowing one is not alone...

ThisTimelessMoment wrote:
Connected with this is a "decision" to give up. My life has been plagued by a narrative or belief of "I can't ". Now I have realised my autism, I'm trying to see what is actual ASD issues that I need to accept as me, and what is my belief that something is impossible for me. I find this very confusing.


Having the word "decision" in quotes really reflects a way I experience this. I accept that my action or lack of action reflects some sort of decision on my part....and yet, when I am in a fugue state, there seems to be no cognitive process attached to this "decision". It is all just knee-jerk, going-through-the-motions ...all in an attempt to feel safe.

I have considered trying CODA. I am glad to hear it helped you and will look again at the literature. When all this first really came to a head a couple years ago, I really beat myself up for my level of codependency. Now that I am accepting my ASD, I am trying to pull apart what is a healthy and reasonable dependency/need for support vs. a desperate codependent need to have boundaries violated (mine and others). Just even in writing this, I feel a relief.
Thank you!

IsabellaLinton wrote:
I grew up around many alcoholic adults in a very dysfunctional extended family where alcohol was a norm and I was shunned for being an uptight or anxious child....
...but I've never done 12-step or much therapy related to others' alcoholism.


I recommend checking out the ACoA literature. It helped me so much, even without attending meetings. It helped to know that *this* is a known thing, others have experienced this, suffered through it...and recovery is possible. And wow.. I am so sorry about to hear about your experience at the Ala-non meeting.

I am a slow writer and slower editor. I hoped to respond to everyone, and had much more I wanted to say, but I must get ready for work so now I am rushing... Austicelders, thank you for sharing and the book recommendation!

Thank y'all for sharing and giving me hope. Let's keep this thread going! Hugs to all.



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28 Jan 2022, 4:40 pm

Unable to write much at the moment, but just wanted to say that I have been in ACA for many years. The big change that resulted in ACOA becoming ACA was very welcome for me. ACA meetings in London are far more dynamic, diverse and accepting of difference than ACOA and any other 12 step fellowship in my experience. Of course, this is just my experience.



chaosmos
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29 Jan 2022, 1:50 am

I am currently self identified ASD (formal diagnosis coming in March), and have CPTSD (diagnosed). I have worked with a trauma specialist for over 4 years now, which saved my life.

I will be following this thread as I too have questions about the overlap of CPTSD and the presentation of what I think are my autistic traits.

I definitely relate to the persistent negative mindset and imbedded patterns of destructive behaviour, particularly in intimate relationships.

Support is essential in healing from trauma. As is support from others with shared experience about how autism impacts trauma impacts autism. It’s all connected. And so confusing at times.

Looking forward to hearing what others have to say!



quaker
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29 Jan 2022, 2:01 am

I have been formally diagnosed with HFA and C-PTSD. It has taken me years to intigrate the two and understand that just because one exists the other
does not. We live in a world that encourages such dichotomous, 'either or' thinking. Many in the spectrum have particular difficulties with this.

Temple Grandin herself once said that that the nervous system of someone in the autism spectrum mimics perfectly someone who has been traumatised. So it's not an easy call to know what is influencing what.

As a result, I have been collecting a list of characteristics which I
feel for the most part (I do emphasise, for the most part)
are characteristics of autism not psychological disturbance.

⚫Genetic link.
There is autism in both my mother and father's side.

⚫Difficulty in communicating non verbally one's thoughts and feelings. Including facial expressions combined with eye contact.

⚫Naturally intense and serious
(little professor, or in my case, little philosopher)

⚫Information processing difficulties. Executive functioning difficulties. Ie planning and organising. Many high functioning people in the spectrum overcompensate and become preoccupied with order and systems to manage and control. This can naturally lead to OCD as an overcompensating strategy.

⚫Natural systemizers. The ability to form intricate systems in order to compensate and manage information overload.

⚫A sense of innocence. Giftedness. A sense of being
'unusual'. Idiosyncratic ways.

⚫Difficulties playing with peers

⚫Enormously difficult to flirt

⚫Natural ability to see patterns and finite details.

⚫Not following fashion. Comfortable is best.

⚫Often unsubtlely naive.

⚫When being in a group of other aspies there is often a sense of deep belonging and kinship (that is, if the group is on the same level of functioning)

⚫Monotone, deep, or voice different in some way. Inflexion. People in the spectrum often naturally develop their own way of using language. They often have very different accents and from those they have grown up with.

⚫Irony and sarcasm a problem.

⚫idiosyncratic ways / sense of humour

⚫Intensity with regards to special interest.

⚫Inflexibility and routines, very ingrained.

⚫Peers difficulty. Most aspies form friends with older people.
(though those who have been abused might have difficulty too)

⚫Males often being more feminine. Females more masculine.
(I appreciate many don't fit this model, but this has been my experience)

⚫Common comorbid conditions:
OCD, TICS, Tourette syndrome, Dyslexia (neurodiverse spectrum, though obviously not exclusively ASD)

⚫ Stereotyped or repetitive motor movements, use of objects, or speech
(e.g., simple motor stereotypes, lining up toys or flipping objects, Echolalia, idiosyncratic phrases).

⚫ Restricted, repetitive patterns of behavior, interests, or activities, as manifested
by at least two of the following, currently or by history (examples are illustrative,
not exhaustive; see text):

⚫Insistence on sameness, inflexible adherence to routines, or ritualized
patterns of verbal or nonverbal behavior (e.g., extreme distress at small
changes, difficulties with transitions, rigid thinking patterns, greeting rituals,
need to take same route or eat same food every day).

⚫ Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects,
excessively circumscribed or perseverative interests).

⚫ Hyper- or hyporeactivity to sensory input or unusual interest in sensory
aspects of the environment (e.g. apparent indifference to pain/temperature,
adverse response to specific sounds or textures, excessive smelling or
touching of objects, visual fascination with lights or movement).



lambeth124
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07 Nov 2022, 5:21 pm

Thank you for this great thread.

I've been two years in ACA in London and feel like I've done an enormous amount of 'peeling back the onion', learning about myself, in that time. However I'm not so sure about healing; I often feel as bad, if not worse, than before I went in. I'm 38, male.

I sought out EMDR therapy for my CPTSD a couple of months ago. Soon after, my therapist and I decided that I should take the Autism quotient test. I scored 35, which apparently means I have a 1% chance of not being on the spectrum. Obviously I've been researching ASD like mad since then and I relate a lot to all the traits. My two closest male relatives on my mother's side both were/are on the spectrum (one diagnosed, one not). So it seems it's likely I might be on it.

However, all my symptoms could also be caused by my CPTSD, as far as I can see. A tendency towards isolation, intense special interests, social overwhelm, fundamental difficulties with relationships / phobia of intimacy, problems being touched, etc. It seems to me that the traits just can't be teased apart - which CPTSD and which ASD. I don't see how any professional could either. Especially since the likelihood of finding a psychiatrist with a deep understanding of both ASD and CPTSD is very small, in my view.

But it's so hugely important, because one is healable, the other isn't (please don't think I'm suggesting I would want to 'heal' my ASD traits - I don't, I love most of them, especially the special interests and the deep engagement with the sensuous world. But I do want to heal my fried nervous system).

I'm also thinking that people may be getting diagnosed with HFA and being told there's nothing they can do to change it, and actually they've got CPTSD and there is.

I'm aware I haven't really added much to the discussion. Thank you to everyone for your posts. Thanks v much to Quaker for that list - I relate to nearly all of them.... HFA or CPTSD, eh? :lol:



BreathlessJade
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11 Nov 2022, 11:06 am

somesortofvariant wrote:
Hello all,

I am still coming to grips with what I believe is my undiagnosed ASD. I used to attend Adult Children of Alcoholics meetings online, but I found my tendency to mimic the behavior and feelings of those I am around didn't lead to positive results after the meetings. I would act more like a selfish jerk after attending the meetings than when I went in, and I think that may be related to my ASD and my constant masking and taking on the behaviors/energies/emotions of those I am around.

I know I need some sort of recovery process like ACOA, and it is becoming more and more evident that I need a fellow traveler/sponsor to have that daily support and motivation. I am in therapy, but 45 min weekly meetings just ain't cutting it at the moment.

So I am wondering, does anyone know of a 12 step meeting for neurodivergent folk? I would even attend AA or NA meetings because sometimes it really seems that I act just like a desperate, drug-addicted person who is just looking out for themselves. (Although alcohol and drugs aren't the issue.....it is just the para-alchoholic/dysfunctional behavior to which I was deeply acculturated as a child.)

I can't tell which behavioral issues are from CPTSD and which are from ASD. Either way, I have been on the brink of destroying my family (20 year marriage and 2 kids!) for the past 2 years. I can be intellectually aware of how I can change behavior to make things better, and I will want to change my behavior when I am sitting alone or in therapy...yet, it seems that it will all fade away when it comes to real world action and interaction.

I am also wondering if anyone out there feels the same or has had a similar experience. Any advice? Words of wisdom?

Any fellow travelers out there?

I hope and pray you find what you're looking for. Where I can relate is the overwhelming response to emotional people around me, it seems to jump on me and sort of captivate me. When I work customer service, the angry (and many happy) customers had energies I could not handle unless I walked away or became hostile with. My normal therapy is like tickling an itchy spot much of the time...just the same ole thing and since I'm undiagnosed, like yourself, they can't treat the ASD. They do treat the PTSD and anxiety but its like so much more help I need.



Lkomisar
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26 Jun 2023, 6:32 am

I so appreciate finding this site and reading this thread. I am undiagnosed ASD and have CPTSD. I’ve been in ACOA for 2 years and have found it beneficial in a lot of ways however I struggle with the social aspect. I’ve only become aware of ASD in myself in the past year. I have a daughter that is high functioning ASD ( forgive me if I’m not using the correct wording, I’m learning :)) she is 24 and she and my other daughter approached me about their thoughts that I too am the same. At first I thought it was absurd but started researching females on the spectrum and I was absolutely blown away… it’s been very confusing. Working the 12 steps with a fellow traveler and having this new information stopped me in my tracks as I’ve questioned my whole life. I feel like I’m rambling… I am grateful that I stumbled across this site and just wanted to be a part of the conversation :heart:



quaker
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26 Jun 2023, 6:51 am

Welcome to wrongplanet.

I have been in ACA/ACOA for over 30 years and was Dx with ASD 17 years ago.

I needed many years of support to help integrate the Dx as I believed all my problems stemmed from OCD, CPTSD, and generally growing up in a chronically dysfunctional and unsafe environment.

Many years on from my Dx with ASD I have come to understand at depth that just because you have one thing that doesn't cancel out the other. Such an integrated path is very much the path less traveled so I wish you well on journey and please feel free to PM anytime.

God bless,

Chris.