autism and anxiety
The two most frequent co morbid diagnoses of autistic individuals are depression and anxiety.
Anxiety is present in the majority of autistic individuals, although it is not considered caused by our autism.
In effect, our anxiety is likely due to circumstances surrounding our autism, and related to having confidence ( or having no confidence) in our ability to handle situations that come up in the process of living our lives.
One theory which has gained understanding and helped many anxious people is “intolerance of uncertainty”.
In early 2000’s, a group of scientists developed an “anxiety test” that centered on self reports of situations that caused anxiety.
The doctors observed that the most difficult obstacles for many anxious people to deal with were the “unknowns” .
We deal with these issues every day of our lives, regardless of our neurology.
We never know how somebody else is going to act or react, we never know when troubles or distressing events will descend upon us from loss of loved ones, illness, injury, change of living conditions, relationship status, to political and world events far beyond the ability to control any of these things in our every day lives.
We can have anxiety over one or all of these struggles, and more.
How do we cope with the unexpected? Do we have insights or skills that can be learned to help us feel more competent to deal with unforeseen events? It seems obvious to me that just telling me I can’t control certain things in my life helps me cope with the worry and the distress I have over unexpected or uncertainty for anything in my future.
I can understand how this may be particularly difficult for many autistic individuals, since most of us feel very inadequate to handle many things in our lives, from social interactions to struggles with bullying, workplace misunderstandings and problems with performance or sudden demands of any sort. It seems to me that “intolerance of uncertainty” is behind a lot of autistic behavior. Consider ODD where sudden demands for performance of any sort are rejected or opposed . Consider the times we “freeze” when suddenly asked to perform, respond, answer a question, or act spontaneously in any way. Note that catastrophizing is rehearsing potential struggles and thinking about how we might cope with those, dreading the inability to do so.
Many autistic individuals may react this way to the unexpected because we may feel unprepared to meet the demands placed in front of us.
I know this is true for me. Is it true for you too?
I understand anxiety is not specific to autism, but that this may be true of any individual who struggles with being anxious in so many ways.
Things that neurotypical individuals don’t bat an eyelash at can send us into a tailspin.
I can see how we look for predictability and how we need to have as many questions answered about any new activity or expectation.
We ( who experience anxiety over the unknown) want to be prepared to meet the demand, and we may prepare, rehearse, plan, and attempt to develop scripts or imagine how we will react if called upon in new circumstances.
When the unexpected happens, we may simply lack the confidence, the experience, the insight, nor do we believe we have the ability to apply previous experience to this new and different circumstance.
Autism for many of us prevents us being able to apply previous experience to new situations, or finding the appropriate learned response to something new.
There are entire bodies of work out there, scientific papers, individual and group therapies, and articles, blogs, discussions, books available about ways to “teach us” to tolerate uncertainty. I can’t imagine the hell of exposure therapy where people are repeatedly exposed to sudden changes and demands in a deliberate way to “teach us” that we can’t control certain events of our lives, and to somehow make these changes more tolerable. I expect that for some, these therapies may help. For me, even contemplating such “therapy” sends my anxiety spinning and causes borderline panic… I could never force myself to deliberately experience such events. It seems my entire life has been a continual series of such things anyways!
I wonder if it will be shown that most of the intolerance we develop for certain circumstances or possibilities is actually the sign that we are not confident to respond to, or to deal with the unexpected or unpredictable. Will preparing for possible events of the future help us feel confident to deal with them when and if they might happen?
If we learn we have more options and that there are many ways of preparing for unpredictable events, will our anxiety ease and will we feel more competent to deal with the unknown?
Tag: autistic anxiety
trauma,anxiety, hyper-vigilance and negativity
An anecdotal comparison between me and my hamster to make a point about negative attitudes.
When I was in middle school I was given a hamster to keep as a pet. She had been used as part of a study done by a college student, where the hamster was administered random shocks and studied to see if its behavior changed.
When I first got her I named her fang.
She had a tendency to bite whenever touched and I had my fingers full of puncture wounds soon after I got her. I understood she bit from fear and self defense and spent a lot of time handling her gently ( and went through a lot of band aids).
Time went on, and she was easier to handle. Unless she was suddenly startled or experiencing anything new, she gradually relaxed and allowed me to pick her up and carry her, place her on my self- in pocket, my lap or on my shoulder and even began to accept offered treats. I enjoyed her company, took pleasure in her progress, even raised a litter of babies. Very positive experiences and gratifying that I could help her overcome her fears and feel safe.
When I was a very small child I was subjected to sudden punishment regarding things I did not understand. I was easily startled and frightened by anything new, any sudden action, sudden motion, sudden change, and overwhelmed by anything I saw as aggression or threatening toward myself.
I was acutely aware of others around me, watching always, wary of threats, bullying, intimidation, mimicry, examining every interaction with the certainty that people intended to harm me, to hurt me, to frighten me, to cause me emotional pain.
I developed huge anxiety, looking out for these assaults, whether physical, emotional, or threatening or suspicious behavior that could overwhelm. Any human interaction seemed to hold this potential.
By age 11 or 12 I was constantly angry, and ready to strike back. I was defensive over every question asked me, and for a while I was willing to confront and engage with others in rancorous disputes (especially the sister I shared a room with).
Sister almost always called our mother in when she thought she was not going to get her way.
I always lost the engagements and was frequently punished by my mother and made to “make amends”, etc for any argument we might have had. Usually it was about my sister wanting me to share something of mine and my refusal. My mother thought I was selfish and made me give or share whatever it was my sister wanted me to share. This was true for the way I was expected to act with others in the household… my other younger siblings, and my parents. Submissive obedience was the only response tolerated under any circumstances.
I felt I could not win and simply gave up. I had no rights, nothing I owned was mine alone to enjoy, no place I could go for privacy, others could come near me and pester, annoy, fight with me , there was no escape until I learned that I could go into the corner of the basement with spiders, mold and water on the floor, and that most of them did not follow me there.
Enter depression. I had been trained in hopelessness and helplessness. I had no alternatives.
I began contemplating being dead around 5th grade, and it seemed a good quiet peaceful place to be. I began to hope I would die every night as I went to sleep. ( If I die before I wake, I pray the Lord my soul to take) . It was a fervent hope, I had been told Heaven was a goal we should aspire to.
I had no resources or tools to understand anything but appeasement. I tried to please others and to stay out of their way.
I have since gained tools, understanding, and independence from being micro- managed and controlled in every thought or behavior.
I have learned to love myself, perhaps that has been the hardest struggle of all.
I didn’t deserve happiness, I was not worthy of anything but abuse. I learned that early on and it was difficult to change my viewpoint.
It has taken me almost 40 years to overcome the 18 years I lived at home and finally all these years later to understand what my autism contributed (and my mother’s) to the mix.
At home I learned to expect nothing but negative consequences, to be on the watch for anything that hurt or threatened, to expect to be treated unfairly, to feel discouraged and overwhelmed and to wish I could escape these feelings.
I spent many miserable years from age 11 or so until I was 30 expecting the worst from everybody, feeling overwhelmed and trapped with my back to the wall, expecting each encounter with others to result in my hurt or harm. I had a negative attitude toward everything. I refused to do anything which I even slightly expected might put me in a spotlight for shaming, humiliation, being degraded, corrected or punished. I believed everybody was out to get me.
I don’t know to this day if it was rigid thinking, my autism keeping me from seeing positive experiences or appreciating them. I don’t know what proportion of my life as a child was actually spent being harassed, degraded, attacked, punished, and humiliated, ostracized, ridiculed, tormented, or bullied. It felt like “always” to me. I felt I could never feel safe.
I do know I felt that being under attack was constant and unrelenting, and I was as a usual state sad, emotionally exahusted, withdrawn or angry and defensive because I was in emotional pain.
I could not do a thing to help myself in my family circumstances and status. I had no idea how to help myself.
Family members and others avoided me because of my negativity. I frequently expressed the idea that I could do nothing right, that everybody hated me, that I could not do the things expected of me.
“Stop feeling sorry for yourself”, “A person is as happy as they make up their minds to be” “pull yourself together and get on with it” “shape up”.
None of those constant remarks gave me the insights and tools I could use to help myself do better.
I never got the supports I needed. If anything these comments added to my misery and my belief that maybe it was all my fault. It convinced me further that I was nothing but a pain and misery to others and that they would be well off without me. ( all sentiments from my parents and others which were frequently expressed as well) .
Skip to today.
I finally got counseling in effective communication and how to make healthy self assertive choices at age 30.
I removed myself from my toxic family and their insistence on my playing the role of black sheep and scapegoat in the family behavior patterns. I could not change their behavior, but I could change the way I responded to it!
I began to make healthier choices and somewhere along the line a lot of my defensiveness and anger left because it was no longer needed.
I learned about negative thinking and tried to look at things from a positive angle.
Even the worst experience had a sometimes positive result ( learned what NOT to do!).
This persistent refusal to look for negative things in my life, to consciously change my outlook, eventually resulted in my ability to see things from a healthier perspective. Learning of my autism was the single best thing that has ever happened to me in terms of self knowledge and finally understanding whys of all the pain of my younger years.
I know now a lot of my negative thinking had been habit, and maybe appropriate for my situation as a helpless child. I could not see beyond my fears and my inability to cope with demands made upon me. I only expected pain and misery because I did not have understanding or teaching from others about how to avoid these experiences or to make them better. Perhaps in my particular family situation I truly was helpless to do any other thing. It seems like that looking back, but I don’t know how much of my experience has been actual, and how much my autistic processing difficulties interfered with my understanding. Probably a lot. For me, the life I lived in my understanding of it WAS my reality.
I am happier now at age 68 than I have ever been. Knowing and understanding my autism and how it affected my early life has been a key to giving me peace.
Parents, if your autistic child becomes hostile, angry, depressed, defensive, argumentative, or negative, consider that they might not be seeing anything but the pain that they are suffering because they struggle to be adequate to their experiences. Something or some things are causing them emotional (and perhaps physical) or mental pain, anguish, frustration and they are feeling inadequate to meet the challenges.
Provide tools… please, provide explanations, assurances, positive feedback as much as possible. When an autistic child is struggling, please consider testing to find which neurological struggles are the worst and use therapy to find new ways to build skills, knowledge, and understanding to do whatever is expected of them.
Consider family therapy too, so everybody can learn better ways to interact with each other.
Look farther than throwing the blame on the individual, and expecting them to magically understand to do whatever it is you expect of them.
Look at how you can help understanding, support progress and insights, give opportunities to build skills and grow emotionally. Explain everything in small steps, explain how, why, where, when, who, and every other small detail over absolutely everything. It is absolutely essential to an autistic child’s understanding. IF your child displays anxiety, overwhelm, defensiveness, anger, and negativity, see it not as that child doing everything they can to cause difficulty, but as an urgent need to change something that is happening in his or her life and teaching skills to cope with or adapt to that circumstance or set of circumstances.
Our sensory processing struggles and rigid thinking can sometimes be a roadblock to understanding the “big picture”. We need help seeing the way, we need tools, life skills to do our jobs (growing up!) and need specific concrete explanations about why and how to deal with so many new situations as we experience them and attempt to learn about them. Please make sure your child gets the explanations and alternatives to behave as expected, to make healthy choices, and the skills that they need to learn to survive and thrive in their world.
I knew my hamster was striking out in fear and self defense due to her constant anxiety over the things she had experienced.
I wonder how many parents or spouses, family and friends fail to see the truth in anxious, angry, defensive behavior in those they know and love?
OldLady With Autism 