Tricky senses

Our senses are incredibly subjective, and our vision of the world is very much a matter of individual perception.

Our senses, how they work and how people experience them, has been a recurring theme for my family these days. One thing we keep in mind is that there seems to be no common experience. Our senses are incredibly subjective, and our vision of the world is very much a matter of individual perception. Our brains are exquisite instruments and the fine tuning done by millennia of constant evolution has led to different calibrations of perceiving and sensing.

Take, for example, color vision. There are some studies showing that people who know more names for shades of a color can actually distinguish them better than people with a narrower vocabulary. My kids have a richer vocabulary than me, so they can speak and readily distinguish teal and aquamarine, while I see either blue, or green, or greenish-blue. Both are neurodivergent, by the by, so maybe they pay more attention to those details than me. And it has been determined that “my” blue is not necessarily “your” blue. This became very obvious with the online debates about the dress and the shoe. When my daughter was a baby, I saw the transition from blue to green eyes faster than my husband, meaning at some point I saw them as green while he still considered them blue. Nowadays we all talk about what color is a particular item, and whether we all agree that it is true.

Another important sense is proprioception—how we perceive where each part of our body is in space and in relation to each other. It is linked to the ability to move, to our sense of balance, and to muscle tone. In “The Disembodied Lady,” Oliver Sacks wrote a very interesting case study of a woman who lost all of her proprioception. All of a sudden, she could not move, or stand up straight, or even sit properly. He describes her as a rag doll; she mentioned “I feel my body is blind and deaf to itself.” She initially lost the capacity to move at all; later on she learned to use vision as a substitute of proprioception, but this meant that she needed, for example, to see her legs in order to move them.

Many autistic people are diagnosed with a low muscle tone and up to 80% are described as what could be seen as hyposensitivity to proprioception: their body movements tend to be clumsy, awkward, uncoordinated. There is also a co-occurrence of autism and ataxia, and some ataxia cases can be precisely due to low proprioception. And some tend to bump into people or walls, or hit themselves more often than others. I believe this can be related to a lack of sensing or sensing less how close they are to an object. Some movements my daughter makes are slightly “off” – not as fluid or graceful as you’d expect. As a toddler, she bumped into walls and people, enough for her pre-K teacher to bring it to our attention. Now she’s eleven years old, and still tends to get too close to people. You can tell those people feel intruded or pushed (even if she doesn’t touch them). They immediately move away or turn to look at her, puzzled or slightly upset. There is a glass museum in a nearby city; during one of our visits, she leaned on some of the display cases containing priceless glass art; I ended up keeping my arm around her the whole time to prevent a disaster. Occupational therapy and certain exercises help, but the sensory difference won’t disappear altogether. My daughter had occupational therapy and is now in dance, has taken gymnastics, which I am sure will be beneficial, but I don’t expect her to have a completely “typical” proprioception later on.

MoGlass
A girl is seen from the back, sitting at a table. She is crafting a glass ornament using a flame coming out of a burner. The instructor is looking at her. Both have dark glasses on.

A sense where a striking difference can be seen in my home is the sense of smell. My husband has a very sensitive nose, to the point of being very much bothered by scents other people can barely smell. Sometimes instead of trying a bite of any new food, all he needs to feel the same satisfaction is to smell it. My son and I seem to be somewhere in the middle. My daughter, on the other hand… we recently discovered she cannot smell, probably almost anything. And for things she can smell, she also doesn’t have the same reaction as other people. We found this out because a few months ago she complained of having a distorted sense of taste, and later on she told us that she could not smell properly. We tested having her smell vinegar and other solutions like it, and she didn’t flinch. We spoke about this to her pediatrician and finally were referred to the ENT. They did a “scratch and sniff” test where one has to select or guess the smell of each label—there are forty different labels in the test she was given. I helped her with the scratching and for some of the smells, I asked her to let me sniff right after, so I could have an idea of how her sense of smell was. At the end of the test, while we waited for the results, she was hopeful, saying she felt she had done “well” on the test. But… some of the smells she had considered pleasant were actually not, and vice versa. Smoke, for instance, she thought smelled nice. And she thought some flowers or chocolate smelled awful.

The results showed that yeah, her sense of smell was really low or absent. Because of other complaints, they did an MRI of her head, which showed no abnormalities. I asked autistic people in the Facebook community of “Autistic not weird” about their sense of smell. Their responses showed that it is not uncommon for autistic people to be outliers, either having a very strong or very weak sense of smell, with some of them lacking it completely. Some even commented that it could depend on different factors, meaning that one day they could smell ok and others not. So… in the end we decided it is simply that she’s one of such outliers.

Because of sensory differences in several of the senses, we have been speaking about “sensory processing disorder,” and I was explaining to my kids that it basically is about outliers, people who sense either too much or too little of each type of sense and one can be hypersensitive for one and hyposensitive for another.

My husband objected to it being a disorder. I started thinking about it, mostly that the term is not official: sensory processing disorder is not an official diagnosis under the DSM. It is listed as a symptom. Furthermore, why would having a keen sense of smell or vision or proprioception be considered a disorder? Is there a “normal”? Is there a bell curve? How do we know how many people have a “normal” sense of smell or touch or hearing?

Some of the disruptions of the senses have medical causes and do create limitations for the person, such as blindness, or deafness. But those don’t fit in the definition of sensory processing disorder. I use glasses, and my daughter asked me if I have a visual processing disorder. No, because with glasses, I can see clearly and interpret what I see correctly.

I am thinking now that a sensory difference would only become a disorder if it makes a person’s life difficult. Sense of smell… I’m not sure. Do you need it to live? No. Could it be better to have it? Yeah, to a certain extent. It’s nice to be able to use aromatherapy and to smell good food, but if you were never able to smell the roses, you won’t miss the scent. Having too keen a sense of smell is not so good when you go by a skunk on the highway. It could be dangerous not to be able to smell smoke, but if you’re in a modern building most likely you’ll hear the alarm and/or will see the flashing lights. Or other people would alert you.

Some other sensory issues do lead to dangerous behaviors, or to a lower quality of life. If people are so sensitive that they don’t like touching things with their hands, this can lead to a myriad of dangers and difficult situations: not breaking a fall, or having serious difficulty eating, and obviously cooking involving kneading or touching dough or fresh meat would be out of the question, if no sensory therapy is used to minimize that sensory avoidance. If someone is hyposensitive, they could touch stuff that could harm them or scratch themselves raw.

Other than when a sensory difference leads to danger or lower quality of life… We have to learn to accept that, as my daughter says, “you get what you get” in many ways. Most of our sensory differences won’t change no matter what we do. Some can be recalibrated a bit. Some will put us at a disadvantage, some others will be very favorable to us…. And that’s just life.

 

Thank God, the baby is fine

You signed off to be a parent. Your child did not sign up for anything, much less to be *your* child. If they had chosen, would they have chosen *you*?

A friend’s blood work pointed toward the child she was carrying *maybe* having some chromosomal disorder. This led to the expected “I’m sorry,” “remain strong,” “trust God,” prayers and positive thoughts and vibes. Afterward, some other studies showed no abnormalities, and the baby was born without any chromosomal disorders, a.k.a., fine.

I was told “oh, the baby was born fine, thank God” and honestly what I felt was not happiness but frustration. The baby would have been “fine” if they had had Down Syndrome. Or Angelman Syndrome. Or whatever. Even within the beliefs of my Church, we’d say if the baby was destined to be born a certain way, it’s because God wants it [but thankfully, he didn’t, someone whispers].

Prayers that would lead to a baby being born without any chromosomal differences, or the “right” sex, or the right color, or length… that would not be a prayer to an all-loving God father of all creatures. If you do believe, really, fully believe, you would not feel this way, sorry to tell you. You would just truly trust him.

Pfff. So, OK, you jumped that first obstacle and the baby was born “fine.” That’s not the end of it. You can discover a few months or years down the road that that baby is not quite your definition of “fine.” They may have health issues. Or be neurodivergent. Or be more sporty that you expected. Or less mathy. Or not have the sexual orientation you expected. Or gender expression. There is no perfect child. They are not meant to be *your* perfect children. They’re supposed to be *their* perfect selves. And that can deviate enormously from your definition or desires.

You signed off to be a parent. Your child did not sign up for anything, much less to be *your* child. If they had chosen, would they have chosen *you*? Are you the perfect parent? Well, if you are clicking on boxes that your child must be this tall and have this shade of hair and eyes, and this tone of skin, and be this skinny or fat and like math or football… no, you’re not the perfect parent. You’re a picky parent. Nobody needs picky parents.

When we decide to be parents, we need to be realistic about all the possible versions of a child that you may have. If you’re not willing to accept each one of those and give them, whoever that is, the best that you can give… just don’t have children. Nobody needs a reluctant parent.

It is possible that life does throw a curveball your way, and that you, without preparation or expectation, rise up to the challenge, and become the parent *your* child needs. The onus is on us. Everyone needs a willing parent.

You need to be willing to learn, especially from people who are like your child. You also need to speak to a variety of people: maybe special ed teachers, or basketball coaches, or doctors, or therapists. You will probably need to read quite a lot, to familiarize yourself with that type of mind or type of body. But more than anything, you need to be willing to love. To put aside all the filters you have placed in front of your eyes for so many years, and see your child as they are: exactly what they were meant to be.

Everyone needs a loving parent.

Who gets to decide what “Quality of Life” is and when is a life worth living?

…a “life worth living” would be the minimum activities or experiences one could have and still consider that yes, that life is still worth “it”: “it” maybe pain, or countless medications, or tools to support daily living.

What each person considers quality of life varies dramatically. For some it may be the ability to rappel. For others, reading the newest research in neuroscience. For another group, it may be eating homemade meals or playing with their kids. If we think of “quality of life” as the optimal situation, then a “life worth living” would be the minimum activities or experiences one could have and still consider that yes, that life is still worth “it”: “it” maybe pain, or countless medications, or tools to support daily living.

(You may have different descriptions for both terms and that’s totally OK.
Just bear with me for a minute).

Fully “abled-bodied” people and people without any neurological conditions tend to pity people who need medications or gadgets to perform daily activities. Disabled people are stopped on the street and told they’re brave for going out on their wheelchair. People’s capacities are underestimated at work and tasks are taken off their plate thinking one is “helping” them. This creates micro and macro aggressions that disabled people face day in and day out.

This situation becomes dire and dangerous when we are thinking about a “life worth living.” There is a point where interventions are not conducted, and treatments are not pursued, based on a more or less arbitrary threshold. It can be age; it can be lifestyle; it can be the idea that a life is ONLY worth living if you can be fully independent to perform this or that task.

Is life worth living only one where you can surf? Or one where you can trek up a mountain? Maybe, at one point in your life. But at another, being able to watch TV with your dog on your lap may be more than enough. A construct studied in positive psychology is hedonic adaptation: the idea that people adapt to new conditions and environments and return to a baseline level of happiness. This means that someone that undergoes extreme events, like winning the lottery or suffering a dramatic accident that renders them paraplegic will go back to their “baseline” emotional state, after a spike in happiness or unhappiness.

A woman I knew, who was always sharply dressed and well groomed, with an active lifestyle, underwent abdominal surgery and, during the surgery, it became necessary to resect her colon to a point that would result in her having to use a colostomy bag, possibly for life. Her family was very worried that she would consider living with a colostomy bag a complete disruption of her life, a definite lack of quality of life and maybe even would turn her life in to a life NOT worth living. How would she reconcile being a sharply dressed, “clean” person with using a colostomy bag? Her family gave approval for this intervention but were uneasy about how to present the news to her.

I learned about this while being away and was able to see her a few months after this. She was dressed just as sharply as before and was as well groomed as ever. The colostomy bag? She showed it to me and told me all the tricks she had learned as to how to clean them and make them last longer!! There was absolutely no change to her demeanor, her joy of living or her attitude. Much less had there been a change to her social interactions. If anything, she had a fun fact about her to chat about. And she had learned that several of her friends also shared her situation.

I have been privy to other situations where doctors hesitate too long in pursuing treatments or interventions, and one wonders if the delay in undertaking those treatments could have worsened the health of those patients or precipitated their death. In some cases, the basis for hesitation is the poor understanding of what a life worth living is for the patient. The medical professionals use their own standards for quality of life or a life worth living on those patients, instead of figuring out what the standards of the patient are (this is a good article on this topic, worth reading).

This misguided projection of their own standards onto patients can be done with elderly patients for whom yes, being able to watch TV in their living room is all they need to consider their life worth living. They no longer yearn for travelling and climbing up the Eifel tower, or going down river rapids. And it can be done with people who have conditions the health professional may personally consider terrible. In the worst-case scenario, it could lead them to hesitate to save the life of someone with severe cerebral palsy or certain types of apraxia or some other condition they deem “unbearable.” Or the health professional would not want to perform a surgery that would make an active hiker become a wheelchair user. I shudder to think that there is a health state classification system that can determine a patient is in a “State worse than Death.” (This system is based on five areas: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression).

The health professional who uses their own point of view and life experience to determine that a patient’s life is not worth living or that their quality of life is nonexistent because “I would not like to live like that” or “I would prefer to be dead” should NOT be treating that patient. And, since we do adapt to different circumstances, health professionals should NOT use the patient’s own old opinions as current. It may very well be that something one would consider terrible at 50 is something we’re OK with at 70. Our views and feelings can change.

This can also influence the way we interact with people who are different from us, even when we have a disability, because we are used to our disability but consider that of others a burden. It can even be seen with dietary restrictions. I have a friend who is vegan; I cannot eat gluten. At some point we were chatting and realized that she thought my gluten free condition was more difficult to deal with than her being a vegan. I thought the opposite way. I have since learned that I have also lactose intolerance and intolerance to soy, crucifers and some fructans (like beans and onions). My husband, who has several food allergies, considers very difficult to cook thinking of all my intolerances while for me they are not a huge deal. My dietary restrictions create many complications and ban many food items from my diet, but my intrinsic quality of life remains the same. I would consider them a minor issue in the great scheme of things.

A major issue, though, is how we view neurodivergent and disabled people in general. And because many of us also think of our own measures of quality of life, we tend to pity disabled people and their families. We are oblivious to the fact that many things in our life that could be pitied by others, because that’s our normal and we are used to it.

It is important to always think that people can live high-quality lives and thrive in situations we cannot envision as being satisfactory for us. We cannot assume what quality of life or a life worth living means for someone else. And honestly, even for ourselves in the future. We should remain open-minded and hear what the others have to say. And respect them.

Autistic diagnosis as an adult

Many people, myself included, received their Autism diagnosis well after childhood… 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.

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.
-FA.

 

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.

The insidious Imposter Syndrome Myth

I have a peeve with the Imposter Syndrome Myth. I’ve gone to several Imposter Syndrome-themed conferences, talks, workshops, community dialogues, you name it. I’ve watched TED talks, read articles and books. It is part of the curriculum of a course I teach to incoming first year students every summer. And you know what? I hate it.

Imposter Syndrome is, deep down, victim blaming. It is posited as something “you” have and suffer from, something “you” must overcome to be successful or feel successful. It is presented by successful people in talks and conferences as something they suffered from as well, and they surpassed it once they learned to be comfortable in their skin. You can do it too!

But here’s the thing. Nobody is “born” an imposter. It does not appear out of the blue. Imposter Syndrome is not something we create from within.

Imposter Syndrome is a symptom of a segregationist, discriminative society.

Who feels imposter syndrome? People who have a certain level of achievement in an area where few people like them succeed. This can be women CEOs or scientists, college students of color in a predominantly white institution, low income students in private colleges. Neurodivergent people in… well, most anywhere where social norms or certain rules or skills are crucial to succeed.

The imposter syndrome is imposed upon people and it is a natural response to discrimination. If you hear people speak about their experiences, you’ll see a pattern of demeaning attitudes from authority figures and from peers.

Dena Simmons speaks about how her pronunciation was mocked at a private boarding school and how her teachers gave her frequent lessons in public about how to pronounce words, such as “ask.” My summer students speak about their high school classmates, school counselors and teachers implying or directly telling them they don’t deserve to be in a highly selective college. That they only got in thanks to affirmative action and will not succeed.

I doubt there is anybody who suffers from imposter syndrome, or has faced it, that doesn’t have had such an experience.

People who “overcome” imposter syndrome don’t do it thanks to society. They do it despite society. Because the same messages that created their imposter syndrome are ever present and don’t go away easily. They do, eventually, when a person is successful enough to be considered an exception. They are considered as an isolated phenomenon but the prejudices about their demographic/identity group don’t go away. Having Oprah Winfrey be incredibly successful and admired has not lessened the discrimination of Black women. Knowing that Michael Phelps and Simone Biles have ADHD has not made people accept the talents and capacity of people with ADHD (or even believe that ADHD exists!). Awareness of Anthony Hopkins’ autism has not lessened prejudices against autistic people. Disabled people are still deemed “brave” for existing.

We need to stop blaming people who face imposter syndrome. We need to stop saying it is something that is up to us to overcome. We need to take responsibility as society to prevent imposter syndrome from arising at all. We—parents, teachers, advisors, and other adults—have an obligation to our youth. We need to teach them acceptance and inclusion. But true inclusion, without pity; we need to really believe in the intrinsic value of all people.

And it can start with simple tasks. Check your privilege. Don’t make assumptions about someone’s potential based on a given identity that you think is “less than” yours. Create a mental portfolio of successful people from this and that identity you don’t share and start believing the successful people you admire within that group are not the exception and could very well be the norm. Speak to a therapist. Read blogs written by people of color, neurodivergent, disabled, low income, religious minorities, anything that triggers your biases. And, in the meantime, keep your prejudiced thoughts to yourself.

Fake it till you make it.

So, let’s assume you’ve found *the* cause. Now what?

Autism is claimed to be related to everything under the sun: from chemicals to the age of the parents. Oh, and the IQ of the parents. And having older siblings diagnosed with autism (duh, genes).

It seems like Every. Single. Day there’s a news article saying they’ve found a correlation between one new factor and autism.

Autism is claimed to be related to everything under the sun: from chemicals to the age of the parents. Oh, and the IQ of the parents. And having older siblings diagnosed with autism (duh, genes).

Pregnancy is apparently the motherload: some study found an increased “risk” if a baby was born by means of a c-section. And if the mom had certain infections during pregnancy. Or took pills for mental health issues. Or didn’t take her medication. Or she took painkillers. Or if she had any autoimmune diseases. Or maybe thyroid problems. Or diabetes. Or didn’t eat enough. Or she ate too much. If and what type of nutritional supplements she used. And if she was stressed. And, even, if there were ultrasounds performed.

After the baby is born, then environment is at “fault.” Maybe issues with the GI tract. Or the immune system. Or heavy metals in the environment. Pesticides, and phthalates from plastic.

I’m not even mentioning other wacky theories that have been clearly shown to be bogus.

A very large, comprehensive study of over TWO MILLION individuals showed that genetics IS really the biggest factor. Maternal factors (such as those mentioned above) were found to show NO CONTRIBUTION to autism. (An interesting find there was that UNvaccinated children are more likely to be autistic than vaccinated children. Yes, you read that right.)

It is exhausting. It is like a vicious cycle. Someone shows a correlation with exposure to the sun*. Then someone else studies exposure to the sun and shows that no, the correlation is actually with going to the beach*. Then someone else studies that again and says no, actually, being in the dark* contributes to the “risk.”

What is the big deal with those studies? Not my money, right? Actually, it is MY money, at least partially, since many of these studies are paid with federal grants funded with our taxes.

Causation studies are a HUGE waste of money. Money could be used in so many more productive ways: schools having more money to pay speech, occupational & physical therapists, as well as paraprofessionals and teaching aides, and special education teachers. There could be more money in career skills development. And please, please, on alternative communication means. And, you know what? More training for staff and families of autistic people, to understand their needs and support them effectively. And to create sensory rooms and quiet spaces.

A recent article shows the vast majority of moneys dedicated to autism go to biology (127 million). Then, risk factors (86 million) followed by treatments and interventions (which possibly are focused toward teaching autistic children to behave like non-autistic children). Only two percent of the funding goes to lifespan issues, five percent to services.

One thing researchers are taught to focus on is: what is the benefit of this study? Am I increasing the knowledge we already have? In most cases I dare saying these studies offer no benefit and only muddle the waters instead of increasing existent knowledge.

Sure, it is a good idea to practice healthy habits when you’re pregnant. And not to drink too much coffee or alcohol and definitely not to smoke. Fine. My expertise is in reproduction and when I was pregnant I was careful in many ways, taking in consideration my age (balancing it with the need to finish my PhD on a timely manner, so I waited until my graduation to try to get pregnant), being careful of what I ate, taking pregnancy multivitamins and folic acid, trying not to stress too much (but honestly, is stress-free living a realistic possibility?). For my second pregnancy, in addition to being careful with what I ate and drank and so on, I waited until being in the optimal window for intergestational interval (the period of time between giving birth and getting pregnant again) to try to get pregnant. We have a family history of neurodivergence and my kids are not neurotypical. They are creative, caring, kind, brave and happy.

Regardless of how much you plan, life is unpredictable and anyone, including the parent, can have or develop a disability. Nothing can give you a 100% guarantee that you, your spouse, your children will never have certain specific needs. Reality doesn’t have to fit your dreams. Causation studies will never create a population where all individuals are neurotypical and have no disabilities. And that should not be a goal, anyway. Humanity is richer because of the variety of thought and neurology of its members.

Research and other funding would be better spent finding ways to increase the quality of life, creating sensory-aware spaces, providing training and education and working toward acceptance and inclusion.

 

 

*I’m making those up, but wouldn’t be surprised if someone studies that. I even goggled them to make sure there was no study about these factors.

Your voice carries… use the mic anyway

…there is no point in being heard, if you cannot be understood.

It is unfortunately very common to go to conferences where the speaker there is no microphone available. Or there is no microphone for the audience. Many times, there is a microphone at hand, but the speaker says “You can hear me, right? I’m very loud anyway” or “I am a walker, so I cannot be behind the podium, but it’s OK, my voice carries.”

This is a serious accessibility issue. That person is not considering that the audience may who be hard of hearing, or have auditory processing issues, or for other reasons not be able to understand them properly; that is the case, for example, of non-native English speakers.

When a microphone is not available, some people may miss part of the conversation. You are also telling them that they don’t matter, they did not play a role in your conference planning at all. People with hearing loss have written about the need for a microphone and why this is consider ableist.

Most people think only about the volume. But we need to understand that it is not as simple as that. You can be very loud, and people could *hear* your voice. That doesn’t mean they will *understand* what you are saying. People can understand speech best when hearing someone speak at a conversational level, at about one meter of distance.

The quality of the sound of our voice changes as we raise or lower our volume. Regardless of how loud we are used to speak, we will put more vocal effort and energy into speaking loudly. Researchers have analyzed how speaking at different volumes changes speech. A study showed that the volume changes aspects such as the frequency of the sound: we speak with a higher pitch—which are also the sounds most challenging for someone with age-related hearing loss. Speaking loudly also makes us speak slower—people speaking loudly needed an average of 10% more time to read the same sentences than when speaking at a conversational volume.

Loud voice and shouting are not understood in the same manner as conversational speech. Even the mood is interpreted differently: a study showed that people speaking loudly are thought of as being angrier and the conversation is perceived as having more negative connotations that if they speak at a typical volume.

When you give a talk, speaking loudly increases your vocal effort and can damage your vocal cords in the long run. People who speak loudly constantly are at high risk of developing voice disorders. You can train yourself to project your voice in a way that minimizes damage. However, even the best voice projection will not cancel out auditory issues, so we are back to square one.

Having a microphone for the audience is also important. When a member of the audience asks a question, they will normally be facing the speaker and not the audience, making it more difficult to understand. If no microphone is available for the audience, then the speaker should repeat the question, using the microphone (this video shows the benefits of a FM system in a classroom).

Using a microphone will always benefit the speaker, as it will cause less strain on their vocal cords. It will of course benefit the audience, since they will understand the words much better. Understanding all the words spoken will make the audience more engaged and participatory. And it will signal that you care for all people in the audience, not only those that have perfect hearing and are native English speakers.

If you are a hearing person, like me, and would not need a microphone to be used because you can hear and understand every word, request the microphone anyway. If a speaker says “can you hear me in the back?” please ask them to use the mic. Not for you, but for whoever may need it.