Growing up on the Spectrum
Early days to maturity—Jen Elcheson
Childhood
I somehow knew from the age of two and a half that there was something profoundly different about me and that it was a result of the workings of my brain. I grew up in the 1980s and 1990s and, until age 17, nobody knew I was autistic with learning disabilities. Navigating the outer world seemed so easy for everyone, but not for me. It was downright nonsensical, chaotic, and muddled. Learning things required patience, extra instruction, and a visual explanation (if available). As others seemingly cruised through life knowing how to do things, mundane or otherwise, their senses effortlessly canceling out external stimuli, I was taking it all in to a higher intensity.
Everything was too fast, loud, difficult, scary, itchy, smelly, and just TOO MUCH! I’m certain I had anxiety from birth. Anything outside my routine comfort zone frightened/overwhelmed me, even ‘fun’ activities. I was a picky eater. My sensory processing needs ranged from sensory avoidant to sensory seeking. I loved pleasant smells but hated bad ones. I liked shiny, soft textures, bold colors, and stretchy materials. I had a collection of bathing suits because I loved how the spandex material felt with the new clothes smell upon getting a new one. I remember walking around, often talking or singing to myself, with my trusted security blanket, a bottle of something to smell or a bathing suit, as if it was no big deal. Other kids I knew didn’t behave in such idiosyncratic ways and I knew I stood out.
I liked adults, but disliked being around other kids. They were always in my space, noisy, irritating, crying over ludicrous things, and making up ridiculous games with constantly changing rules. I often hid in my room with books, ponies, and dolls. Socializing felt prickly and cringy. I now realize I was full of anxiety, exhaustion, and frustration, and could not properly identify my feelings. The kids mom picked to be my friends did not feel like friends. They tolerated me at most. That is, when they weren’t calling me a weirdo or ostracizing me.
Upon seeing a psychologist at age three, he told my mom she was raising an eccentric and to love and accept me. That was great advice and all, but no answers to explain my ways of being. I was not alone in this experience. I’ve met a lot of autistics who were not identified until later and who were considered odd, different, or eccentric as children rather than autistic. There was simply no information at the time. Even now, society is still in the early stages of understanding autism.
School
School equaled an abundance of social and academic challenges. How I moved, played, processed, stimmed, or talked, I was mocked for it. Adding to the frustration, my neurodivergent younger brother was immediately identified in kindergarten as dyslexic and as having attention-deficit/hyperactivity disorder (ADHD) when I was likely seen as a having “problem behaviors.” I wasn’t assessed or evaluated for anything—I suspect because I was a girl who appeared capable.
Lack of social understanding and other factors resulted in me repeating kindergarten. I was frequently on the “thinking bench” first year. I didn’t know why I was put there, let alone know what I was supposed to be thinking about. Eventually, I realized kids lied about me to the teacher to avoid playing with me. Sometimes I got to brush the teacher’s hair to prevent any issues. (Mrs A., wherever you are, thanks for meeting my odd sensory needs—really.)
The bullying continued the following year as kids were aware of me repeating a grade. Then the year after my teacher had the audacity to mock me for stimming in class, further encouraging the kids to be nasty.
I also regrettably learned to bully kids back. I thought everyone was bullying me and couldn’t discern who liked me/who didn’t. I couldn’t read body language/social cues. If others were nice to me, I didn’t believe them. I would sometimes push them away, resulting in no friends until I realized nobody would like me if I continued. I began making some friends in late elementary school. I was tired of being the kid everyone hated and I wanted friends.
I started to teach myself how to pass and blend in with others, using what I was reading or watching as guidelines. For example, there were a few book series I loved and collected. Many kids didn’t understand why I had such an intense interest in these books, but they encompassed important social themes. They were more than a pastime, rather a crash course in social skills I didn’t innately have. One would think I was teaching myself a new language, a hidden curriculum. In many ways I was.
Academically, I struggled with unidentified learning disabilities that teachers saw as lazy/defiant acts of refusal and inattentiveness. I received average marks in some subjects, but continually failed math and science. Processing verbal instructions came slowly or they always sounded garbled. I did best in language arts, but, being a literal thinker, couldn’t fully comprehend abstract language until later. I wasn’t a gifted autistic who could read classic literature or encyclopedias by any means.
I had/still have gross/fine motor delays. I was unable to hold a pencil or use scissors for years. I felt inferior and couldn’t regulate emotions well. The meltdowns in and out of school were combinations of sensory overload, continuous academic failures, exasperation from trying to make/keep friends, and bullying. Although many girls on the spectrum hide their difficulties, saving their meltdowns for home, I could only hold it together to a certain extent. Emotional regulation problems made this challenging. I’m amazed that I made it through school.
Teen years
My teens were similarly trying. I habitually strived to hide any quirks that would single me out. There was some bullying in the beginning, but it eventually stopped after switching schools and my ability to pass strengthened. I had always struggled with anxiety, but the new kid on the block was depression. Because I actively worked really hard to fit in, it became very tiresome. I remember skipping school to go home and sleep.
I learned to pass by observing others, watching shows/movies, devouring young adult contemporary fiction, and collecting women’s magazines. They were all intense interests, but definitely not a healthy way to acquire realistic social skills. Unfortunately, I became very rigid about being this supposed “normal” version of myself and it really messed with my identity. In hindsight, I felt as if I was playing different roles and acting them out. I was a social chameleon. How I presented depended on who I was around. I also found by imitating the actions of others or through quietly observing I would get into fewer social “SNAFUs” (Situation Normal, All Fucked Up).
With the information out now, I know that passing, although a privilege in itself, is daunting, and can greatly confuse and hamper the development of one’s true identity, all to make the neuromajority comfortable. While there are social skills necessary to get us by in life, we should not have to change our entire presentation so people will accept us. Being so focused on fitting in, I had pretty much stopped caring about academics and grades. I wanted to fit in with the kids I hung out with. I also began to obsess awkwardly about looking and acting as much like my peers as I could and about boys.
Meltdowns mainly transpired at home, but I recall having a really intense one at school over a misunderstanding where friends ignored me after I said something wrong. I wanted to know what I had said wrong and fix it, but when no one would talk to me, I ended up extremely distraught. I started attending counseling. I wanted to know why I kept struggling but was not prepared for the answer.
I was identified at 17. I am sure my preoccupations over pop culture, boys, and friends were a dead giveaway to the clinicians, along with information my mom provided. The last thing I would have imagined was an autism diagnosis. I knew I had ADHD and learning disabilities like my brother, and they too were confirmed. However, it was a shock hearing my primary diagnosis was Asperger syndrome. In hindsight, I knew it was true deep down, but oh did I fight it! I didn’t want to be the weird girl anymore; I thought I learned to hide that stuff! I felt shame and guilt, which I internalized until I finally learned to accept myself eight years later when something finally changed my perception.
Young adulthood
My early young adult years consisted of failed relationships and jobs, so I decided to go to vocational school. I eventually found my niche in supporting autistic/neurodivergent kids when I started studying. I cannot explain my sudden interest in autism; I was just strongly drawn to it and eager to learn. When I met the kids, I was stunned at how much they reminded me of my younger self. Years of denial peeled away and I knew exactly why I had to support them. The professionals who identified this in me had it right all along: I AM actually autistic! As many of the courses I took involved a lot of self-reflection, I discovered my true autistic self in the process. This eventually led to my current career in working with neurodivergent learners in schools. Basically, I’m currently doing what I can to be the role model I would have wanted. I also write about autism and volunteer with some autistic-run organizations, all online.
Leaving the nest
Leaving home was something I stressed over immensely when younger. That changed at 19. I sought independence and moved out. I have no regrets, but I wish I had gone about doing things differently. It wasn’t easy. I worked a variety of jobs and lived in a few different places. Jobs didn’t work out or the ones I did well in weren’t my idea of a career. Eventually, I moved back to my home town to earn my social service work diploma and school support certification. I was anxious about returning to school, but knew that in order to have a decent job I had to study. I am glad I got the courage to make this choice as I am finally in a suitable career and living situation.
Overall, growing up on the spectrum during a time when attitudes and perceptions greatly differed from today made self-acceptance challenging. I’m glad, despite all of the pitfalls I faced, that I could finally get to where accepting my different neurology opened up many opportunities I wouldn’t imagine otherwise. I can finally say that I am becoming more of who I am meant to be as I continue through life. I would encourage others to aim for the same!
Menopause and aging
“Growing old disgracefully” has always been a statement that rang true with my perception of aging. Not in the sense of causing chaos (but that could be fun) but in the sense that I don’t want to grow old like the rest of society.
The common perception of aging is one of gray hair, aching bones, losing our memory, being put out to pasture where society pretty much forgets your existence. Being autistic and having to battle my way through life to be accepted and respected for my worth, I really don’t want to go quietly in my twilight years.
Nearing the age of 50, it does now concern me what does lie ahead for us. For me, I still don’t think I have reached full maturity, and in a sense I don’t think I ever will or want to. Many of us are renowned for looking and acting much younger than our actual biological age. Maybe we have the secret of never growing up, like Peter Pan, maintaining that childlike wonderment? It really does make me ponder.
Unfortunately, the harsh reality is that we are not getting any younger and we need to start planning a future that will positively support us till the day of our final transition off this earthly plane. Once we start hitting those years of 40, 50, and 60, things begin to change both physically and mentally. The years mark the transition into menopause and ending of our childbearing years. Some of us can’t wait for this day to come, but for others it can be one of loss. For me, it is a stark reminder of how many quality years I do have left ahead of me.
Hitting perimenopause certainly makes a statement in that “change of life.” It doesn’t come quietly—well, not for me—but makes me feel like one crazy woman that really doesn’t have a grip of her own life anymore. Plus, there are the physical changes that really add to screwing with your head. Periods, which were once predictable, now come early and then eventually change to being late, even up to months at a time. Our bone density declines, with the future prospect of osteoporosis, and unsightly and fast-growing black facial hairs appear as a result of declining levels of estrogen. Oh, and this unpredictability of hormone levels actually matches the unpredictable moods swings—I think there could be a connection there. I was being sarcastic. On a positive, I think it improved my levels of sarcasm.
So, the onslaught continues—foggy thinking. I literally think these past couple of years that I must be getting the onset of some neurological disease as I cannot for the life of me think straight. The sharp thinking, working with 37 tabs open on the computer, isn’t so easy anymore. I still have the 37 tabs open, but for the life of me I don’t know why half the time! I constantly forget where I put things when I used to be the one who knew where everything was. That mental spark fades and it is seriously frustrating.
Yes, there is more… Let’s throw in the hot flushes, the night sweats, the change in body odor, brittle hair, increased risk of breast cancer, and weight gain that never wants to leave again, and you can see this “change of life” really is not much fun at all. I think you can guess why I can’t wait for this to be over.
But we can survive this chaos that is prepping us for our twilight years of no longer being chained to the monthly ickiness and pain. There are good-quality supplements to help with sleep and hormone changes. Your doctor can give you options of taking other paths, but please make sure you do your research as a lot of us are sensitive and they may not be suitable for us.
Also, another practical approach is to take up things like yoga or Pilates to help with strengthening our core as our bones and body change. Exercise is good not just for our body, but also our minds. That is one of the biggest things. If we feel OK mentally, we can usually take on these challenges so much better.
As we continue to age, our bodies change in other ways too—arthritis, the aches and pains, cognitive memory fading. They make you wonder one day, how did my body change to this? You question yourself and think, I used to be able to do so much! We beat ourselves up at not being what we once were.
The prospects ahead of life-threatening diseases like cancer, diabetes, or coronary heart disease become all too real, and more so if they run in the family. Who will look after us, especially if you are, like me, childless and with no close family? Not that we expect our family to care for us in our old age, but it is good to know someone who understands your needs as you age.
We may be hypersensitive to medications, I know I am, but who is going to remind the doctors and carers as we age? We most likely will all have sensitivities to our surroundings, but who is going to ensure, if the time comes when we are placed in the care of a nursing home, that accommodations will be made for us? How do we protect ourselves and point out that we don’t like physical contact by strangers, the noises, the lighting, the foods we are served up?
The only way to try to ensure that people know these concerns is to start planning before it is too late. If you have family or someone you completely trust, work with them to plan out what you want when the time comes and you need care. We may not all need this in our later years, but be prepared; I cannot stress this enough. I personally watched my father in the last 18 months of his life be put into a nursing home as he had a debilitating condition, Lewy body disease. Watching a very intelligent, physically powerful, and larger-than-life man stripped pretty much of dignity, no longer being able to care for or feed himself, was incredibly heartbreaking. Through this experience I watched the dynamics of the nursing home, how carers were constantly in and out of his room, the fluorescent lighting that hurt my eyes, the wanderings of fellow patients who would randomly appear in his room due to their dementia, and it certainly hit home. How could I ever live my final days like this?
This stark reality potentially awaits us. But we don’t have to let this consume our thoughts in these later years. If we plan now how we would like to spend our days, and preferably with as much support and accommodations that work for us, I believe we can be prepared and still grow in many ways. We still have time to do things that make us happy—just maybe a tweak here or there, accepting the changes and working with them. Life doesn’t necessarily need to have a depressing end.
Now for me, what do I want in these years of maturity (yeah, I know, I’m laughing too)? To feel happy, to be surrounded by people who get me, actually to ask for help to make my life easier. Do I want to end up in nursing care? Hell, no! But if it happens, I am prepared. I know what I want. I want to have a pet to share these days with me; I want my art, to still be painting, even if it is just with my fingers or toes; I want to listen to music, listen to books if my eyes are failing. I want to have that crazy multicolored short hairdo to show the outside world I’m still worthwhile. All of my life I have loved living in my head, the creative world within, and drawing on this, I know I can still fill my mind with beautiful thoughts and memories as I drift off to that next adventure, next life, wherever that may be…
Dr. Michelle Garnett on growing up on the spectrum
Early days to midlife
For so many women, the diagnosis of autism comes late. This means that there are a lot of “missing” years. Some women experience a lifetime of feeling that there is a lot missing—clarity, understanding, validation, support, sense of self, and friendship—so much so that they feel that they themselves were missing from their own lives. Essentially, many late-diagnosed spectrum women feel that they missed out on life, and consequently there can be a great sense of grief for those “missing years,” as well as relief once a diagnosis is made.
Life without the understanding of a diagnosis in the early years is evocatively and accurately described by Jen. A sense of being different starts early, usually during the onset of the social years in kindergarten. Unfortunately, as Jen describes, it is at this very early stage of life that rejection from peers can start also, confirming the sense for the young girl not only that is she different, but she is different in an unlikeable and defective way. When teachers join in with the mocking and rejection, the negative conclusions are confirmed. It is as if the whole world is against you; there is nowhere to turn, no one who will understand, and the ground is prepared for depression, anxiety, and other long-term mental health conditions.
Fortunately for Jen, like many other spectrum women, she was resourceful and smart. She learned early to use the strategies of keen observation of her peers, research (books with important social themes), and imitation (playing different roles and becoming a social chameleon). In true aspie style, she took on these themes to an expert level, and learned the social curriculum as if she was a native to it. Recent research (Ormond et al., 2018) that we have conducted at the Minds & Hearts Clinic compared the profile of 98 girls aged 5–19 with a diagnosis of ASD with 138 boys similarly diagnosed. Results confirmed that girls do indeed utilize the coping mechanisms of observation and imitation to cope with having ASD significantly more than boys do. Ironically, this social prowess, gained via the intellect and with considerable effort, is a reason in itself for the late diagnosis of females on the spectrum.
There are a number of positive protective factors that Jen’s story can teach us, these being mirrored in many stories of my own clients, as well as in current research. The first is the positive power of the use of observation and imitation to cope with social demands. I like the analogy of moving to a new country where one must assimilate the language and customs of the country in order to be able to find a job and make friends. The trick is not to lose who we are in the process. The primary goal of psychotherapy at Minds & Hearts is to learn to know, accept, and love one’s own self, the true self, the person behind the mask.
This is linked to the second positive protective factor, found in the words of the psychologist who saw Jen at three years old, when his advice to Jen’s mother was to love and accept Jen as she was. Research has found the world over that people on the autism spectrum do better when they are the recipients of love and support. It is no surprise really that humans do better with love and support! As a clinician working in this field for more than 20 years now, if I could give any advice to a parent of someone on the autism spectrum it would be this: Love and accept your child now for who they are, as they are, including their autism. Your child is not someone who needs to be fixed, your child is a unique gift and your job is to find out who they are, how they are, and, most importantly of all, how to show them that you love and accept them.
The third protective factor in Jen’s story is that she found an intense interest (or it found her!) that led to a satisfying and meaningful career. Like many on the autism spectrum, Jen has a huge compassionate heart, and as a result has made of her pain a gift to the world so that others do not have to suffer as she did. This is the true meaning of success. I have found over and over in my clinical work that women on the spectrum do best when they tap into their intense interest and hidden talents—for example, intense empathy, as is the case for Jen—and make a career of it.
Aging on the spectrum
One of the huge challenges of life for people on the autism spectrum is transition, and probably one of the least researched areas in autism is aging. So we have a massive challenge ahead of us because we can predict that the transition to old age for people on the spectrum will be difficult, but we have very little knowledge and expertise to guide us. Nevertheless, Barb’s story paves the way, highlighting that a number of things really help. These include:
• Advance notice—it really helps to know and understand what will happen, physically, cognitively, and emotionally.
• Preparation, including gaining advice and making plans.
• Seeking social support—not the first thought when one is on the spectrum, but crucially important to assist us not only to survive but to thrive.
• Being proactive about minimizing adverse consequences by looking after our health, including taking up things like yoga or Pilates.
I would like to highlight that, genetically, autism is linked to more negative health consequences such as cardiovascular disease and dementia. While this is not great news, I highly recommend finding out, via a family history search, which areas of physical decline may be on the cards for you. To be forewarned is to be forearmed. There are excellent pathways of prevention for many of the known physical diseases associated with age. Taking positive action early is an excellent way of coping with the stressors of change.