While I can only speak to you of my personal experience, being diagnosed with both ACC and ASD, I know that what I am going to write about it common to those on the spectrum. I've also talked to enough ACC folk to realize that it can occur with us as well. What am I speaking of? What is Existential dread? It is "angst without handles" or free-floating anxiety.
Angst means fear or anxiety. The word angst was introduced into English from Danish angst via existentialist Søren Kierkegaard. It is used in English to describe an intense feeling of apprehension, anxiety, or inner turmoil...
The first, and in my opinion most important thing to realize about this type of anxiety is that it is not dependent solely upon one's thoughts. Certainly with the intrusive thoughts that ACCers get, that can be a cause of great anxiety, but free floating anxiety is most often without a cognitive source, or without a concrete thought process spurring it on.
Quite often when doctors are not aware that a patient is ACC, they might even be wrongly diagnosed with bipolar disorder, because from only the external point of view, it appears to outsiders like a manic state, but it is not. The anxiety is "existential" because it is at the core of the person, almost experienced as if part of their identity. For this reason often cognitive therapy fails to produce any long term relief. It appears "manic" because it can come on, at any time, unannounced and unprovoked, build up to a crescendo and become utterly disabling.
I spent many years trying to cope with the facet of my life, largely to fail doing so. I realize today that the point of view that I was approaching it was incorrect. As I mentioned earlier, an existential dread does not necessarily have a thought process as its foundation. That isn't to say that intrusive and out of control thoughts do not exacerbate this horrible feeling...in fact they feed it and cause it to snowball out of control.
The most successful approach I know, to even begin to cope with this horrible experience is Dialectical Behavior Therapy. It developed by Marsha M. Linehan, a psychology researcher at the University of Washington, to treat people with borderline personality disorder, and has found great success in those with TBI (traumatic brain injury). Primarily it teaches an individual distress tolerance skills and mindfulness; being able to specifically identify felt states and use techniques to change them.
The first coping skill is used to distract oneself from painful emotions and is called ACCEPTS:
- Activities - Use positive activities that you enjoy.
- Contribute - Help out others or your community.
- Comparisons - Compare yourself either to people that are less fortunate or to how you used to be when you were in a worse state.
- Emotions (other) - cause yourself to feel something different by provoking your sense of humor or happiness with corresponding activities.
- Push away - Put your situation on the back-burner for a while. Put something else temporarily first in your mind.
- Thoughts (other) - Force your mind to think about something else.
- Sensations (other) – Do something that has an intense feeling other than what you are feeling, like a cold shower or a spicy candy.
the next skills is Self Soothing:
This is a skill in which one treats oneself in a comforting, nurturing, kind, and gentle way. You use it by doing something that is soothing to you. It is used in moments of distress or agitation. This could be prayer, meditation, listening to music or another activity that brings about a peaceful state of mind.
next we are taught to IMPROVE the moment
Imagery - Imagine a relaxing scene, when things have gone well in the past, or other things that please you.
Meaning - Find some purpose or meaning in what you are feeling. Tack a word to it.
Prayer - Either pray to whomever you worship, or, if not religious, repeat a personal word to yourself.
Relaxation - Relax your muscles, breathe deeply, practice progressive relaxation.
One thing in the moment - Focus your entire attention on what you are doing right now. Keep yourself in the present.
Vacation - Take a break from it all for a short period of time.
Encouragement - Be your own Cheerleader. Tell yourself you can make it through this!
Among other skills is Emotional Regulation (I found this one particularly helpful):
- Identify and label emotions
- Identify obstacles to changing emotions
- Reduce vulnerability to emotion mind
- Increase positive emotional events
- Increase mindfulness to current emotions
- Take opposite action
- Apply distress tolerance techniques
Unfortunately I can only give a short overview of DBT in the small space of a blog. I can tell you that this can be learned/practiced individually, with the aid of a book/workbook, with a therapist, or in a group, so it can be adapted to your unique situation.
The source materials I recommend would be:
and the book and DBT Diary I personally use:
While DBT will not eliminate the extreme anxiety and dread feelings that I am writing about, it can help to reduce and make the more manageable.
I would think, that these skills would be workable by a teenager and up with ACC, but there are still many skills that can be taught early on to younger children.
Telling us to just "change our minds" or "stop thinking that" will not help someone with angst without handles. Likely you will just serve to escalate the anxiety. I also find very helpful a weighted blanket, that gives constant pressure and sensory input and has a calming effect on many with ACC and ASD. They are particularly effective with the younger folk who may not yet be ready for DBT. You can find weighted blankets here: SensaCalm is a great source for these.
Not for one minute do I wish anyone to have experienced the extremes in anxiety that I can have. Most people (myself included) collapse mentally under its weight. I also use, for emergency only prescription Xanax, a potent anti-anxiety medication. There are certainly moments when none of the skills I have learned and practiced will help in the moment, and I'm grateful to have the medical support, but I do not depend on it.
I hope you have found my post helpful!