This post was written by an amazing and caring friend of mine; we are both in a support group for families where at least one member is autistic. I’m deeply grateful to her for allowing me to share her story on my blog.
Thank you very much for giving me this opportunity to share my story with you. My name is Rachel. I am a lot of things, including a mom, an advocate, an artist, a partner, and Autistic.
For those who don’t know, Autism is defined by social communication differences; medical professionals would also say, “a propensity towards restricted and repetitive behaviors” or, as I like to say – a desire for order and routine in a hectic world.
One of the other things that a lot of people don’t understand about Autism, that I wish they did, is that it’s not something that people can mature out of, and it’s not something that should or could be cured.
Many people, myself included, received their Autism diagnosis well after childhood. I’ve spent the vast majority of my 37-years not knowing that I was Autistic. It wasn’t until about a year ago that I discovered I was indeed neurologically different, and not just peculiar to most of the people around me. I’ve been in a unique position, having experienced life both with and without a diagnosis.
For me, my diagnosis was a liberation. It explained everything. I’d struggled all my life trying to make sense of why I experienced life the way I did. Why things happened to me, why I was so odd, and why I couldn’t and didn’t want to be like other people. Knowing I am not neurotypical helped me change my self-confusion into self-pride.
It put many of the difficulties I had with school and with social situations into perspective, as well as allowing me to work out why I find some situations very stressful and exhausting. These are things like social exchanges or small-talk, loud environments, meeting new people, sitting still, public speaking, etc. In short, it was a massive relief – I know who I am, how I can expect myself to be, and that there’s nothing ‘wrong’ with me.
I feel vindicated by the diagnosis and a sense of having the right to be myself – for the first time – in a world that doesn’t always welcome or appreciate that self. I’ve had to put on a persona of social acceptability and adaptability to be tolerated by neurotypicals. I was performing or masking my true self from those around me. I spent three decades trying to fit in, and now I am trying to stop. This is a massive change, mainly in terms of understanding and not being so hard on myself. It makes it easier to meet people and take on new experiences – like this one – because I know why I find things difficult, I know what might help, and if it doesn’t work, I no longer feel the guilt and the shame.
I now know why I was an uncharacteristic child. By the age of 14 had collected everything I would need to live on my own — dishes, curtains, furniture, carpets, appliances, etc. At the age of 17, I bought my own house and started life as an adult. I worked full-time, supporting myself, and went to school full-time. I know now why I decided to go to a local college and forgo the typical college experience. What a scary proposition that was! I understand why I didn’t go to parties when I was invited, and why I didn’t enjoy the parties I did go to when I’d guilted myself into going. Had I been neurotypical, I probably wouldn’t have been nearly as independent and self-reliant as I am today.
Before the diagnosis, when I ‘withdrew’ it had always been attributed to being shy, preoccupied, uninterested, or moody, when inside, I often felt calm and content. I was often surprised when people were upset with me. It explained why I had difficulty functioning in a typical way and found day-to-day life such a challenge.
Autism is as much a part of me as the color of my hair or my love for tattoos; it’s just not as visible in the same way. I’ve successfully made it to adulthood – as an Autistic person in a neurotypically ruled world. I don’t wish to be typical, although there are aspects of my Autism that make life hard for me. I would prefer not to have the anxiety and sensory issues that I have. Still, the heightened sense of smell, fantastic visual memory, superior spatial awareness, super-sonic hearing, and intense empathy are all very appealing character traits.
I do loathe how difficult it is for me to engage in typical discourse, and also my panic attacks when it comes to confronting the big, wide, human world. It’s those social hang-ups that do set me back.
I am autistic the way you have a pointy nose or straight hair. It goes all the way through me. It governs the way I think, listen to my body, the way my body talks back to me, how I see the world, everything.
I don’t know how many of you know Temple Grandin. She’s a very well-known Autistic self-advocate and public speaker. She speaks about how she thinks in pictures. I do this, as well. If you were to converse with me about dogs, for example, my brain immediately starts pulling images of actual dogs that I’ve seen. If you mention driving down a dirt road, I’m visualizing dirt roads I’ve been on for context. I don’t think in generalities or words.
I am glad that I have autism, I find neurotypicals confusing, like sheep following each other around. They never seem to say what they mean, routinely tell lies, exclude those who are different, subscribe to superficial trends, engage in nonsense small-talk, and are obsessed with conformity.
I feel I’ve sacrificed my Autistic gifts, to fit in, when I was younger. Maybe if I had been diagnosed earlier, I would not have spent three decades trying to fit in; I would have been able to forgive my social deficits earlier, thus saving the energy required to pretend to be normal, which I could have dedicated to things that I wanted to do.
Autism makes me unique, and in principle, I don’t mind being different. I know I am talented and bright in a unique way. Although, I sometimes wish I had the social skills to be able to do something more with that set of skills.
I get through each day with a set of compensatory behaviors, personas, and clever strategies for avoiding certain situations without anyone knowing. Unfortunately, these efforts can come at a price, including exhaustion and burnout.
I organize myself – my daily schedule, my belongings, I take the same route to work, I live in a pattern. These routines help me make sure that I don’t miss and forget things. Without organization, the chaos of life gets to me. I am a self-proclaimed hyper-organizer and a really good one at that!
As a child, I studied people, and by the time I reached adulthood, I was a master at analyzing social behavior and how to emulate. I should note that this ability is not intuitive; it involves conscious awareness and effort one-hundred percent of the time while in any social environment, which is unbelievably draining.
I make eye contact when I have to, but I’m a mouth reader. Eye contact is completely distracting for me, although I have learned that if you look in between the eyes, the other person will think you are doing the whole eyeball thing. Intense eye contact is overwhelming, and I’m not able to concentrate on what the person is saying. All I think about is looking away and not making it evident. I rely on intonation to tell me what I need to know about a person’s emotions. When on the phone, I close my eyes so that I can take in what the person is saying. With my eyes closed, that’s one less sense that I have to filter to get to the meaning of what the person is saying.
As an adult, people often ask if I am OK. I don’t know what my face is saying a lot of the time. Having my words and motivations so frequently misunderstood has lead me to self-censorship, requiring me to be on alert to every single thought before I utter it. Even with this filter in place, social faux pas are common because the filter doesn’t always know what to filter. I’ve been known to divulge way more information than I should. I find all conversations smothered with anxiety as I anticipate that at any given second, I might say something that will offend, confuse, or alert my audience to my lack of fluency in my native social language. This fear is not a Social Anxiety Disorder in the sense that it is irrational and psychological in origin. The distress is based on evidence and fact and is rational: it happens frequently and is due to a lack of cognitive skills in this area. One other bit I struggle with is not knowing how to accept compliments of any kind. When I’m given an accolade, I tend to shut down and shy away. I’ve also been known to speak way too loudly when I’m excited or interested in a topic. I get going, and so does my “outside voice.”
Being independent, learning to cope with adversity, being determined when I want to learn something new or finish a project, and being good at problem-solving are all traits that I attribute to Autism. I am very artsy and creative, and I am honest to a T. I absorb the emotions and anxiety of those around me. I have a ridiculous and unusual sense of humor that’s probably seen by others as childish at times. I adore my intense focus and attention to detail, as well as my sense of morality and opposition to injustice. Being trustworthy and dependable are also characteristics that others attribute to me. I do not doubt that these abilities and qualities are also related.
There are times I’m in my own world. I can work on something and not realize a whole day has passed because it feels like it’s only been a couple of hours. When I get in the zone, I’m determined to finish whatever I’ve started. I think that’s made me a pretty great problem solver over the years. I feel like that’s one of my finest traits.
I’ve learned that sharing is something that is required, and I generally concede without complaining, but that doesn’t mean that it comes easily. Lending or sharing an item means a loss of control, not knowing where that item is or what shape it will be returned to me in is tough. This feeling is associated with a preference for routine, sameness, and a dislike of change – specifically, change others implement. All of these elements incorporate the same underlying stressors: ‘I don’t know how to make sense of this and how to maintain control.’ For me, controlling my possessions, tasks, and environments reduces stress and anxiety.
Sharing space, when cohabiting with others, can be troublesome for me. One of the critical facets with my ability to function is knowing where every single item I own is – always. If I know, I never need to worry about not having what I need or having to search for it. I know where to find what I need at any given moment in time; therefore, stress is minimized. Living with others means that things are moved and broken. The impact of this is enormous – far more significant than merely the annoyance of having to look for or ask for something. The certainty of my physical world is the foundation of my existence. At times it can be difficult for others to comprehend my extreme distress when something has been moved. This distress is not an over-reaction or a sign of mental illness; it’s all an easily explainable part of my autism. Everything in my home has its place, and I spend considerable time picking up after my son and partner, putting things back in their rightful spots (including their belongings).
Like most autistic people, I have sensory issues. As I mentioned, many of my senses are heightened, but some are dulled. A dulled sense might include the inability to sense cold, heat, or pain. As an example, I have a very high pain tolerance and prefer lava-hot showers.
The sensory intolerance makes it hard to be in crowded places; movement, noise, and close proximity are overwhelming. I’m not easily able to tune out the sounds around me that aren’t essential, so I tend to hear everything at once. I had my first public meltdown the other day. My partner and I were on vacation and getting a drink in the hotel bar. There was so much going on; I started to feel this overwhelming urge to flee the area. I tried to politely tell my partner I wanted to go back to the hotel room; not wholly understanding the gravity of my feelings, he ordered ‘just one more drink.’ I immediately started sobbing and told him I was leaving. He was utterly taken aback and hadn’t seen my reaction coming at all. Once I started crying, I felt as if everyone in the room was looking and talking about me, which in turn only made it worse. When I feel myself heading towards a meltdown, I enjoy sitting in my closet and closing off from all outside stimuli. A bit of sensory deprivation, if you will.
I find specific movements and behaviors, either enjoyable or ever-increasing, at times of stress. By far, the most common is fingerpicking. As a finger-picker, I can say that I am largely unaware that I do it. For me, there is a need for constant movement even when sitting still, along with an urge for perfection – if I feel a rough edge to my skin around my fingers, I have to try to get rid of it. Obviously, this tends not to work well and creates a more uneven surface. In the end, this usually results in sore and bleeding fingers. Picking my fingers and biting my tongue and cheeks all fairly typical sensory behaviors.
And the other thing, when I order food, for example – people are always like “speak up speak up” or “can you repeat yourself?” It’s not uncommon to hear people tell me I never said something when I know I have. I feel like my voice is never falling where it needs to be. I feel like I’m continually thinking hard about – “is my voice level appropriate?” It’s like I’m actively thinking – where’s my voice volume? It’s not automatic. If I am anxious or over-excited, I can unintentionally speak out of turn or speak over people. I can get ramble-y, which leads to the oversharing of information that I mentioned. I don’t know when to stop talking because I hate awkward silences. The connection between my brain and mouth often breaks down. I know in my head what I want to say and how to say it, but it comes out in broken English and is near impossible for people to decipher. This cycle is continuous in that I get embarrassed and further garble my words and meaning.
I find solace and relaxation in repetitive movements, and therefore, it should not automatically be assumed that behaviors of this type are a problem or only arise during anxiety. I find that rocking and swinging put me into a trance-like, almost meditative state, which is profoundly relaxing and all-consuming. My weighted blanket also provides me with proprioceptive input; it calms my body and feels as if I’m being hugged while floating on a cloud. If I’m upset or in meltdown, I’ll rock my whole body while sitting on the floor in an attempt to self-soothe.
These movements and behaviors are called stimming. I have found that, if I am stressed, anxious, or upset, I stim more. To counteract this while in public, I rely on fidgets like putty, spinning rings, gum, hair ties on my wrist, etc. When I was a young child, I found comfort in poking the corners of my eye with the rolled-up edging of my baby blanket while swinging in front of the bookshelves. – It’s different, right? When I’m not in public, I vocally stim, singing words that are stuck in my head, making up funny names for my cats and son (and saying them over and over). I also regularly talk in movie quotes. Repetitive speech, like this, is called echolalia.
Stimming is something that most everyone does to some degree, but we stim a lot more.
The other thing is my body pose. It’s hard to explain, but there are these specific positions that are familiar. One of my favorites is to sit cross-legged with my shoes off. I know it’s not attractive, but it’s calming for me to sit that way. So, if I’m comfortable or if I want to feel at ease, I will sit that way even in public. I will also sit like this for 12-hours at a time at my desk.
My struggles with changing plans and breaks to routines are significant. Although, you would never know that I find these things so hard-hitting. I tend to tell the world that the situation is fine, take the stress, and do what is required. Behind the closed doors, my anxiety batters me.
I loathe when people change plans, but I never let it show because I’m supposed to be flexible. I tell them it’s okay, but it’s not okay. It’s never okay. When they have gone, my head hurts, making sense of why they didn’t do what they’d said they were going to do and what it will mean for me to have to reconfigure.
Mental health conditions like anxiety attacks are the outcome of this refusal to admit my limitations. Before my diagnosis, admission of limitations equated to failure for me. Admitting vulnerability and asking for concessions or help is hard after a lifetime of masking. I have learned to hide my anxiety and smile outwardly when at work, although not always successfully. I now realize, since diagnosis, how incredibly strong I am for pulling myself together so often. Changes, even minor ones, to routines upset me significantly and cause my stress levels and anxiety to go through the roof. A few weeks ago, the school bus did not show up to pick up my son for school. Needing to drive him into school and set my schedule back by half an hour messed up my whole day.
Everything from the change in my parking space (because my usual spot had already been filled) to missing getting my morning coffee with a co-worker can put me in a tailspin. I maintain routines and schedules to ensure a level of certainty and predictability in my life. These things provide structure and limit stress and anxiety. I adhere to many routines and procedures throughout my day, but these will not be immediately obvious and are deliberately hidden from those around me. It is surprisingly easy to maintain a structure without anyone being aware that I am enabling my own need for predictable outcomes. Maintaining these small measures make the difference between feeling secure and able to cope with my day or feeling completely overwhelmed and ineffective because my markers of certainty have been lost. I am seen as a competent and independent person, but my whole life revolves around routines, and I go through phases of obsessiveness.
I have tended, like many other Autistic women, to form relationships with other Autistics. My social and emotional needs are relatively small (in comparison to a neurotypical woman) and are easily met by a partner with similar requirements. My relationship is crucial to me; my partner is also my best friend and constant companion. I am loyal and faithful. My partner, Bryan, and I met online. Neither of us knew that the other was Autistic when we started to communicate, nor for several years afterward. We are two peas in a pod, delighted to have found each other after many failed attempts. How on earth we managed to discover each other, I don’t know. We can happily spend 24 hours a day together for extended periods and not get irritated. It is as if he is an extension of myself. We place minimal emotional demands on each other, and if we do, they are explicitly defined to avoid uncertainty, anxiety, or potential for failure.
Most importantly, we accept each other without judgment, regardless of how odd and unfathomable our behavior is at times. Our relationship is a once-in-a-lifetime experience for me, a respite from the performance I put on for the rest of the world, a place to truly call ‘home.’ I cannot emphasize strongly enough what a difference this has made to my entire life. My partnership provides me with acceptance and support to reach my potential in other areas of my life. I know for myself that before meeting Bryan I spent all of my energy and capacity in trying to fix bad relationships – changing myself to fit what other people told me I ought to be – which left me mentally and physically harmed and incapable of pursuing things that might make me feel good about myself.
My autistic partner knows best how to care for me in situations where I’m in meltdown, on the floor in a fetal position, pulling out my hair, hitting my head off of a wall, crying so badly I’m choking on my snot, and hyperventilating. He knows not to talk to me and to give me only physical support until I’m able to come around.
I’m eager to continue learning and figuring out how best to take care of myself. I have confidence that the only way from here is up. I give thanks to my friends and family for their understanding and support. I appreciate the time and effort; it means a lot to me – I wouldn’t be who I am today without you.
There is an adage: “If you know one person with Autism, you know one person with Autism.” No two Autistic people are the same. To that end, I hope my story gives you some understanding of the positive characteristics of Autistics and the kinds of challenges we face each day.
Thank you guys so much for reading.