Autistic Women, Aging, Addiction and Sensory Overload
I remember the first time I tried an opiate. I was 14. The doctor had prescribed codeine for a bad cough and I laid in bed thinking “God this is amazing. How can I get more?” For the first time in my life my body felt “good”. No pain, no aching, no itching to get out of my skin. Just peace and contentment. The thought left as quickly as it came, chased out by the realization that scheming ways to access a controlled substance was probably not the way to end my family's legacy of addiction.Thirty one years later, I still feel vestiges of euphoria pulling from my navel when I think back to that day. It is an experience known by addicts as “jonesing”. All I knew was that the pain had stopped.
As a child my little body didn't know how to interpret the world so it reacted with distress. I would cry as my mother did her best to dress me and by the time I left the house for school, I was already exhausted. I did not understand why other girls wore their bras as a right of passage and my mother finally insisted I wear mine for the sake of modesty. It was just another painful requirement. As I grew up these sensations didn't disappear entirely but they diminished enough to take a back seat in my consciousness. I still refused to go into certain stores and avoided crowds, loud noises and florescent lights, but my tags and sock seams no longer felt like razor blades. Life had become bearable.
And then in my late 30's I got pregnant with my third child. My body interpreted cold as sharp and twisting pain across my skin. I could no longer be in an air conditioned or florescent room. My joints began to ache and I felt like my muscles were trying to crawl out of my skin. The little things that as a child had accosted my senses were seeping into the category of intolerable once again. A blender or coffee grinder, sirens, the echo in an empty room, even someone coughing, laughing or sneezing sent my system into overload. Some of these sensations were immediately noticeable but others like a headache or my emotions might take several hours or even days to register.
So I resorted to my once forgotten childhood tactic of piling books or clothes on top of my sheets to weigh down my body at night and I started to talk with other women about what they were experiencing. I was not alone. As a matter of fact my experience is very common among aspie women in their 40's and 50's. A "tired but wired" sensation which made the already difficult task of sleeping now impossible. An increase in: hypersensitivity, difficulty thinking and focusing, greater anxiety, more pain, less productivity, less tolerance for social interactions and more down time needed to recharge. I stared doing research on cortisol and how hormones are affected during menopause and peri-menopause.
Some of the doctors I spoke to had no idea that cortisol was even an issue for women in general let alone autistic women. I dug further to find that no one was even talking about cortisol and autism which seemed rather remiss given that if you have autism, it goes without saying you also have heightened levels of anxiety and cortisol IS the stress hormone.
The more my senses felt the assault, the more I began to compulsively obsess. I spent hours reading everything I could get my hands on, every checklist, every forum, every research study about women and autism. My 21 year old daughter pointed out that she had tried numerous times for several days to get my attention while I was working and I had not responded. As someone trained to evaluate for autism, the fact that I did not hear or acknowledge her when she stood directly in front of me and called my name did not go unnoticed.
Sensory overload, anxiety and obsession go hand in hand. As someone strictly bound by conventions and rules I didn't find a way to get more codeine, I never smoked, never drank and even as I became an adult the closest I ever got was a glass of wine once or twice a year. But obsession is a beautiful pain killer, and autistic people do it exceptionally well. Obsession is as good a drug as any and it was my drug.
There is a myth in mainstream culture that suspends the autistic profile throughout time as if for some reason because a person is autistic they don't change, don't grow don't learn new skills, don't experience the stages of aging. But autistic people do grow up, age and change. Autistic women do it differently than neurotypical women and we do it differently than autistic men.
There is a whole population of autistic women over 40 who are encountering changes in their bodies, their metabolism, their sensory system, their hormones, and brain functioning. And without the right tools to help cope with and understand these changes, they report being frightened and ill-equipped to deal with these adjustments. They like me are becoming more obsessed as a way to cope with the increased sensory overload. Addiction, depression, anxiety, eating disorders and suicide are all legitimate concerns for these women. And no amount of compliance training through ABA as child can fix this dilemma in spite of the insurance industry's reliance on behavioral treatment.
So what happens to those women who are living in institutional settings, non-verbal and relying on someone else to care for them? Do they experience the same pain under florescent lights that I feel but have no ability to communicate it let alone remove themselves from the offending environment? And when they have a meltdown as a result, does the psychiatrist assume they are just psychotic and increase their meds when what they really need is an incandescent light bulb and pain relief (or at least a weighted blanket)? Or perhaps a doctor who can assess their hormonal status or determine seizure activity? Yes, women during peri-menopause and menopause report having symptoms of mild seizure activities especially at night.
I've worked in institutions and residential settings. I've seen medications used as restraint. It happens more often than I would like to admit. We need to start talking about the issue of autistic women aging and providing support to help these women prepare for and deal with life changes effectively, both in and out of institutions.
For Starters, Professionals Can:
- refer autistic women to local and on-line support groups where they can connect with other women going through similar experiences
- refer autistic women to medical doctors who are familiar with hormonal shifts and cortisol through the process of ageing
- recognize that some medications can increase hypersensitivity and lower the threshold to pain
- screen for eating disorders, addictions, anxiety, trauma and depression.
Families and Friends Can:
- recognize that autistic women like all people, will change through time and as we age we may experience shifts in mood, pain tolerance, ability to process information and ability deal with change.
- make adjustments to activities and plans to limit sensory overload, burnout and anxiety (e.g. go to lunch at 2pm to avoid the rush hour, volunteer to drive or make phone calls when possible, avoid making unannounced visits)
- give extra processing time when communication is difficult.
Employers and Colleagues Can:
- ask employees who exhibit characteristics of autism or are open about a diagnosis if there are specific supports or accommodations that can be made in the office to improve their well-being and productivity (e.g. a "scent free" environment if perfume causes headaches, an alternative work schedule, written directives in addiction to verbal instruction)
- work with the employee's natural rhythms and cycles (e.g. adjust their schedule when they put in overtime to meet a deadline on a project to avoid burnout)
- create a visually clean and serene environment
- create a work culture that encourages employees to take necessary breaks, and practice self-care.
There is a bright side to ageing. Many women in their 40's, 50's and 60's report that they don't worry as much about what other people think and consequently feel more at ease and relaxed without the pressure to conform once their autism is identified. This is no small accomplishment for a group who is identified in large part by the ability to convincingly fake social conventions and fool the experts into seeing neurotypicallity in an effort to try and fit in.
It is this bright side that is perhaps the most important part of the equation. Autistic women feel perpetually "alone" until we are able to develop relationships with others on the spectrum. There is just as much incentive to kill the emotional pain of isolation as there is to kill the physical pain from a sensory system that is out of balance. This is why young autistic women need to be connected to older autistic women as mentors who can give them the guidance and support only other autistic women can provide. Creating healthy connections decreases the need for addictive behaviors and allows for a person's special interests and obsessions to be utilized in a way that enhances life instead of eclipsing it.
If this article made you think, you might like Toni's book Autism Translated.