Autism Acceptance Month: Respect

Autistic people are listening. What are you saying?

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When my daughter was about three years old, the social worker at the integrated school she attended told me a story. It was about a non-speaking autistic boy who was able to communicate when he was older. I don’t remember if it was typing or what means he used. Anyway, his mom asked him: “Where were you during all these years?” He answered: “I was here, listening.”

 

I froze. I started thinking and trying to remember absolutely everything I had ever said about my daughter in her presence.

 

My kiddo was diagnosed with a speech delay at two and stopped using baby jargon somewhat late, as I posted previously. Now, I absolutely adore her and think she’s incredibly beautiful, smart, silly, a climbing monkey… so most of the comments I’d made about her were surely positive. But it is possible I did say something to her teacher or to my husband (her dad), or to her brother, that could be hurtful.

 

This is something that not only parents of children with a speech or communication delay go through. Parents of all children, including those that know for a fact that their children hear and understand them perfectly, sometimes say really hurtful stuff about their children. Maybe the kids can take it. Maybe they build a thick skin. Maybe that’s the way their parents use to teach them about the awful, uncaring world out there.

 

But psychological studies have shown that it’s the opposite. Hurtful words hurt, period. They lower your self-esteem. They make you feel like you don’t belong and that you are not worthy. They deprive you of the “secure base” you deserve. Contrary to what some people think, being treated roughly doesn’t build resilience. Having a trusting, loving relationship with your parents does. Schools, by the way, should also strive to foster belonging and providing that secure base.

 

Having that secure base is very important for people in general. It is incredibly more important for autistic people, and especially so, for those who don’t communicate in a “typical” way and cannot immediately tell or show you that they’re being hurt by your words.

 

Speaking in a demeaning way about an autistic person who cannot respond immediately, especially when the person speaking is in a position of power (bus driver, teacher, therapist, parent…) is abuse. Autistic people do hear them. They do understand what these people are saying. If the situation is difficult, the demeaning language will escalate it. The person in charge is not helping the autistic person, and they are not helping themselves. Speaking that way doesn’t make them a better person. It just makes them a bully. Unfortunately, it does happen that children are subjected to this type of treatment. I know of a child who doesn’t speak, and for a long time didn’t communicate by other means. He has been abused by teachers, therapists and transportation staff. At the time, he could not communicate what he was feeling. Something that commonly happens in this situation is that the children will try to defend themselves; for example, they could refuse to enter a space, or they could push, shove, or hit someone. As can be expected, then they’re considered “problem kids” and aggressive. At the same time, they are still considered as unaware of what is going on around them, so their behavior is not seen as a response to mistreatment or verbal abuse. It is a terrible downward spiral, with negative treatment eliciting aggression in response, and that prompting more negative treatment…

 

But what if they don’t tell it to the autistic person? They only tell their friends, or other teachers, therapists, parents… they may feel they need to vent and complain. Or “process it” through humor and jokes. What’s the damage then? The damage is that they are creating and sustaining an environment that is hostile to autistic people. They are normalizing thinking that autistic people are “less than,” and they are normalizing hate speech.

 

People can start this behavior quite innocently, with minimal comments. But if it doesn’t stop there and escalates to the next level and then the next one… finally the people that work or live with autistic people end up feeling like they’re martyrs for, basically, doing their job, and they start looking down on their students, patients, children… and very bad things can happen. I’m really not exaggerating at all.

 

Unfortunately, many autistic people have lost their lives at school or at home. In some cases it’s been because they are held down with such force, that internal organs are damaged. In others, it’s been actual murder. I have witnessed how a group can become polarized and intensify this feeling of superiority in relation to autistic people, and of martyrdom among those that work or live with them. I left several online groups because of this.  It is easy to see the negative publicity and propaganda published by NGOs that use fear mongering to obtain funding. And there are internet sites and groups that can, definitely, be considered hate groups. It is awful. I cannot, don’t even want to imagine, what an autistic person feels reading what they post.

 

It is very enriching for everyone to read what non-speaking autistic people write. They state that they are hurt by demeaning comments, and that they can hear & understand what is going around them. Emma’s mom, Ariane Zucher, wrote in Emma’s Hope Book about a situation where Emma was taken to the wrong school and was seen as being aggressive because she refused to get off the bus. Rami Kripke-Ludwig wrote a very insightful article on about hurtful language, Carly’s Cafe by Carly Fleishman shows her point of view about what happens during a coffee shop interaction, Ido Kedar has written books and has a blog. Amy Sequenzia writes in several outlets and also blogs. And there is an anthology written by autistic people who type to communicate: Typed Words, Loud voices.

 

So, this month… be mindful of how you speak about autistic people, both in their presence and to others. Look for websites that respect them and avoid those that speak about them in a demeaning or hurtful manner. Don’t donate to organizations that use propaganda based on fear. If you do want to donate, donate to organizations founded by autistic people and/or that have acceptance and inclusion as a goal.

Culture clashes

…when you are “neurotypical” and are raising a child who is neurodivergent, it is like raising them in a different culture.

As parents, we try to do what we believe is the best for our kids. Some of us read lots of books, some consult with psychologists, some with school staff, or go to workshops (maybe watch parenting videos too?). We try.

When we are raising a child in a different culture, it gets more complicated than usual. Maybe manners are different. Like how you interact with people when you enter a room. Do you say hi to everyone? or each person? Kiss, hug, look them in the eye or not? In Mexico we kiss everyone on the cheek (normally the right one, by the by, all need to go in the same direction to avoid… uh… accidents). But in Italy is on both cheeks, Switzerland it’s three kisses, US… none.

I would argue that when you are “neurotypical” and are raising a child who is neurodivergent, it is like raising them in a different culture. Their culture is different from yours. Only, they don’t need society to instill those manners or behaviors in them, they are born knowing that culture and behaving consequently.

If you have lived abroad or immersed in a different culture, you’ll agree with me that there are tons of behaviors, customs and phrases that don’t make sense to you. You can *understand* that it is important for *them,* but you won’t *feel* it in the same way. People from Germany and other “orderly” countries can suffer in Mexico because there seems to be chaos all the time. People say they will come to your birthday party but won’t show up. Or they come two hours later and won’t realize they need to apologize. They say “maybe” when they mean no.

So… imagine you’re a Mexican raising a German. It can be very, very frustrating, especially since you’re Mexican, and you had another child who behaves like a proper Mexican and you don’t understand why this one is behaving like a German.

Your neurodivergent child comes in a nice neurodivergence package. Unfortunately, some parents don’t realize this (they don’t know about neurodivergence or they have been told their child is “neurotypical,” aka not having any neurodivergence). These parents then keep trying to raise the child as “neurotypical” but they will invariably become frustrated, because the child cannot understand the reasoning behind the manners or behaviors their parents are trying to instill in them. Or can understand the reasoning but don’t really “feel” it and will commit faux pas after faux pas.

Now, there are parents who DO know their child is neurodivergent. Then the options are basically to educate them as if they were “neurotypical,” which will lead to frustrations like those experienced by parents who aren’t aware of their child’s neurology. Or they could raise them keeping in consideration that they are neurodivergent. A third option is to keep in consideration that they are neurodivergent BUT try to have them adapt to “neurotypical” ways, manners and behaviors.

There are many therapies that try to “help” achieve an “optimal outcome” that means that the child will be “indistinguishable from peers.” This, arguably, would lead to societal acceptance, better treatment from peers, a good job, better grades and better quality of life.

But… it does not. What is achieved with “indistinguishability” is actually what neurodivergent people call masking. Basically, it means playing a role all day in front of others, fearing that being themselves will lead to societal rejection, poor treatment from peers, bad grades, no job and low quality of life. The person inside doesn’t change. It’s only what is shown to others that is portrayed differently.

Does masking lead to societal acceptance? Hmm. Probably some, but not enough to be worth it. Masking is hard work, and it would require to keep in mind all types of situations. You’re bound to mess up sometimes (just as one does in a different culture). The more time you spend with someone, the more likely they’ll detect a crack on your façade.

What about treatment from peers, romantic relationships, raising your children? I’d believe it’s the same as above. Plus, the added stresses from any relationship would put a strain, and masking can become even more difficult (again, I’m drawing from my experience in other cultures, or even different types of society—imagine living for a week with a family with a very different socioeconomic status from yours, pretending you’re “one of them.”) Child rearing is extremely stressful as it is, and you’ll have different perspectives on how, why and when to discipline your children than your partner’s. This is specially draining if your partner doesn’t have your same neurology.

Bad grades? Actually, probably your grades in college would suffer if instead of playing to your strengths by studying what you like and are good at, you study whatever you think society is demanding of you. Or if you don’t study in the way that makes you learn better, because you’re trying to study like the rest. And masking would imply that you don’t request necessary accommodations, which will take a toll on your academic performance.

Job? Are you kidding me? People who were diagnosed as adults say they suffered because they were not receiving accommodations, peers were not patient with them, they could not keep a job. People who mask have reported similar situations.

Better quality of life… imagine living in a lie. Pretending to be religious in a super conservative society. Gay in a homophobic one. “Neurotypical” in an ableist one. People who mask have seen that their self-worth is hurt; they suffer from depression and anxiety. It has been studied in girls and is believed to be a main cause of late diagnosis, which in turn cause these girls to receive services and help later on in life than otherwise. As Kieran writes, masking is not adapting to change. Masking is tiring and causes anxiety. Ryan Boren links masking to burnout.

If you were masking, you would always be wary of new people. What if they like you, you become friends, and then you lower your guard, they see the real you, get freaked out and you never see them again. You’re never able to relax with a friend. It’s like being undercover, always in danger of being discovered.

When we train (or drill) our kids to become “indistinguishable from peers,” we are teaching them to mask (or camouflage, as it is also called). We’re leading them in the wrong direction. We’re leading them to low self-esteem and exhaustion. They don’t deserve that. They deserve to love themselves as they are, and to be loved without masks. Maybe they’ll have fewer friends. So what? Those few will be real friends. They’ll be able to relax and actually enjoy being with them.

We should teach our children how to interact with “neurotypicals,” for sure. But never at the expense of their individuality and dignity. “Neurotypicality” should be shown as just another culture and not as the correct and best way of being. Because it simply isn’t.

Otomi Dolls
Since I mentioned Mexico… shown are two dolls made by Otomi women in my home state of Queretaro. On the left is a boy, wearing a whitish hat, his black hair is showing a little bit and he is smiling. On the right is a girl, her hair is black and long, braided with ribbons. She’s also smiling.

Smelling the flowers… or not.

When I was little, we learned about five senses: vision, smell, hearing, touch, taste. Currently, it is believed there are actually eight: the five we all know, plus vestibular (sense of position & movement of your head in space, influences balance), proprioceptive (where your muscles and joints are in space and in relation to each other, influences our capacity to move), and interoceptive (e.g., hunger, thirst).

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, he can smell it and that’s all he needs. 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 what she can smell, she doesn’t seem to perceive like other people.

A few months ago, she complained of having a distorted sense of taste. She said she felt a sweet taste in her mouth, basically all the time. A little bit after that, she told us that she could not smell properly. We tested that at home, having her smell vinegar and other solutions like it, and she didn’t flinch. We spoke about this to her pediatrician and, after several months, she was referred to the ENT.

The ENT gave my daughter a “scratch and sniff” test where one has to determine (or guess, as she was instructed) the smell of forty different labels. I helped her with the scratching and, for some of the smells, I asked her to let me sniff right after her, so I could have an idea of how her sense of smell works. While we waited for the results, she was hopeful, saying she felt she had done “well” on the test. I told her that I was not so sure about that… some of the smells she had considered pleasant were actually not, and vice versa. Smoke or skunk, for instance, she thought smelled nice. And she thought some flowers or chocolate smelled awful.

The results showed that yeah, her sense of smell is really low or absent. Because she was also complaining of headaches, they performed an MRI of her head. While we didn’t think it would show anything, it is always great to hear that the scan was clean, with no abnormalities observed. The pediatrician mentioned that other causes of a decreased sense of smell include respiratory infections, or allergies, or even your environment or certain solutions. My sense of smell has been under attack a couple of times, first when I was working with pigs, and more recently when I was using some lab solutions that I guess I didn’t properly protect myself against. But my daughter has not had any medical treatment nor has been in any situation that could affect her sense of smell. And it is not linked to allergies, or to sinusitis or any other respiratory illness.

Then I asked autistic people in the “Autistic not weird” Facebook community page. The responses showed that it is not uncommon for autistic people to be outliers, either having a very strong or a very weak sense of smell, with some of them lacking it completely. Some also commented that it could depend on different factors, meaning that one day they could smell fine, and others not. Several said they were adults before they realized their sense of smell was outside the typical range.

In the end, we decided that my daughter is simply one of such outliers. I guess in a way she’s lucky she found out when she was ten years old. We spoke to the pediatrician and she said a supplement that seems to help is zinc (I take it and has helped me), but then, how do you know that her body actually uses zinc properly? It is possible that she does have all the zinc needed but doesn’t have enough receptors. We had already tried allergy medication just in case it was related to allergies, with no results. And, if she’s always been that way, is it worth it or needed to try to find a solution?

Her sense of taste, by the way, is present, and some autistic people also said they can taste fine, even if they cannot smell well. She does like strong tastes, such as spicy food, and very dark chocolate, so maybe her sense of taste is somewhat dulled by the lack of sense of smell.

How much do you need your sense of smell? Do you need it to live? No. Could it be better to have it? Yeah, to a certain extent. We were talking about the pros and cons of having a too keen vs. a dulled sense of smell. On the negatives: lacking a sense of smell means aromatherapy is worthless for you. You cannot smell the aromas of good food, and smells will not make you evoke special memories. You cannot enjoy the smell of the sea, or of the forest, or of flowers. But one can venture that, if you never relied on your sense of smell to feel good or to remember anything, then you must have adapted and use your other senses for those purposes. Now… It could be dangerous not to be able to smell smoke, but if you’re in a modern building most likely you’ll hear a fire alarm and/or will see flashing lights. Or other people would alert you.

On the negatives of having a strong sense of smell: going by a skunk on the highway is a nightmare. Some perfumes and scented candles, even though they should be pleasant, are too strong and can reach the point of being disgusting. The perfume department in a store is hellish. The smell of some foods is too strong and repulsive. You detect foul smells way too fast or for too long… A few days ago, my son accidentally burned a napkin in the microwave. We were all nauseated by the smell, except for my daughter. She was totally fine. “You. Are. So. Lucky!!!” was my son’s comment.

My son and I both thought that, if we were to lose a sense, we would prefer it to be the sense of smell. As I mentioned above, I experienced a decreased sense of smell a couple of times, and it was more unsettling than anything. You would not really need accommodations, special devices or tools. But again, losing a sense is not the same as being born without it. You cannot miss what you never had, right?

Red tulips
A garden of red tulips, shining under the sun.

My argumentative children

“Spirited” children, or maybe “strong-willed” or, yup, “difficult.” There are courses, books, blogs dedicated to them. But… what is really a strong-willed child, and is that a bad thing?

In a blurb for a course for parents, they speak about challenging behavior, tantrums, and blow ups, power struggles… and “The spirited child can easily overwhelm parents, leaving them feeling frustrated and ineffective.” I don’t think we’re quite there, but yes, it can be tiring having kids who will not hesitate to point out the weaknesses in your argument or request. It can be annoying. And exhausting.

One of the characteristics observed in very young children on the spectrum, and in those with ADHD (and other diagnoses, I’m sure), is that “they want to do things their way” and they are “stubborn.” Neurodivergent children (and people) do see life differently. And, consequently, they react differently. Some norms and rules make no sense to them, and, under scrutiny, some of those rules would make no sense to many neurotypicals, either.

Yes, when I was constantly trying to have them do things my way and when I wanted it, I ended up frustrated. A couple of years ago, I was trying to get my son to clean his room. I was sure that cleaning your room was a crucial life skill. A basic rule of life, right? My arguing with him and asking him to clean his room would lead to arguments and more arguments, and a couple of times I ended up crying. What it didn’t lead to is a consistently clean room. He and I managed to clean his room twice, after many sessions of many hours spread over several days. I even took a picture! And a couple of days later, then the room went back to its usual state.

But then a couple of things happened: one is that I spoke to his amazing speech therapist—who was helping him with executive function: organizing, planning and carrying out tasks and projects, among other skills—and, while talking about his challenges with executive function, she commented, nonchalantly: “and I bet his room is a mess.” Her explanation is that for people with ADHD it is extremely hard to decide, for example, what to discard or give away; or to decide between two items. In ways, I was subjecting my son to torture, because part of my frustration was based on assuming my son thinks like I do, so I was forcing him to do stuff like I would do it.

Then I thought about myself. Normally, I have absolutely no problem with decision making. Some years ago, though, I would go to the grocery store at night, after waking up very early to go to work, coming home to help with whatever was needed and to take care of my toddler and my son, who was in his terrible twos at the time (my husband was with them during the workday). Anyway, I would go to the store and would be looking at yogurt and, for the life of me, I could not decide between strawberry yogurt and raspberry yogurt. And I would tell myself that it was ridiculous that I had already spent ten minutes looking at yogurt, for Heaven’s sake, and could not make up my mind. My solution was to stop going to the supermarket at night. Period. But… what if there was no escape? What if it doesn’t matter how tired you are, what time of the day it is, or how much you worked that day? What if every single time you go to the store you struggle like that? Was I adding one more frustration to my son’s day? Was it needed? Is cleaning your room decisive to your success as an adult?

The other thing that happened is that I’ve been teaching a summer class at the university where I work. The class focuses on study skills and success as a college student. One of the things we emphasize is the need to be intrinsically motivated. That is one of the main factors that will lead to success in life. Extrinsic motivation, which is given by others, can be given in the guise of prizes or punishment. It has been demonstrated that neither works. Even when it apparently leads to continuous improvement of a skill—think tiger moms and piano—it will not lead to the person enjoying that skill or way of living. And it definitely doesn’t create intrinsic motivation and doesn’t foster resilience or grit, or a growth mindset—the belief that you can improve in any subject or skill, if you work at it, and that intelligence and talent are not fixed and unchangeable.

So… I was trying to embed ideas about intrinsic motivation, a growth mindset and grit to my students, but wanted my son to do something he didn’t see a point in doing and that was extremely tough for him, just for the sake of… what? His room is not open to the public. I don’t spend much time in it. I don’t read the books that are inside, nor do I wear the clothes in his closet. So, at that point, I explained to him what I was thinking, and why I thought it was important to have a clean room, etc., and we reached a compromise: his room does have to have space for me to walk on, so I can go in and say good night. And it has to have a clear path to the window where we have the emergency ladder. Other than that, it is his room and he has the authority to decide what gets done in there. Common areas, however, do fall under my authority, and he has to do the chores related to those spaces, and try to keep them tidy. I bet some parents would frown upon our idea of “tidy” but, well, they have their own house they can keep impeccable.

That episode with the room cleaning has been, as far as I remember, the most prolonged and exhausting with my son. Others have been frustrating too, but I’ve come to realize that it depends a great deal on my perspective and how I deal with it. For instance, he is in charge of the dishes that have to be hand-washed. I was nagging him and he would totally forget anyway (really totally forget; he’s not the type to pretend in order to get out of a chore. If he doesn’t want to do it, he’ll argue about it and let you know what he thinks). Instead of getting angry, washing the pans myself, lecturing him, what started happening was that, hey, we have no clean pans, meaning I cannot cook breakfast. Natural consequences are great teachers! He’s doing much, much better in that respect. And yes, there are many more examples, with both kids.

Overall, I must say I prefer my kids to be argumentative. In fact, it sort of worries me when they give in too easily (just don’t tell them I said that!). It looks like I like it difficult, eh?

Well… on one side, there are many, many benefits for teens and adults who were argumentative, stubborn and pigheaded as children. I do believe it shows that they put more thought into their actions. They don’t just do whatever you tell them, they evaluate the request, and decide if it is actually something that should be done. Sure, it is frustrating for me, but I know (hope?) that if they react like that to me, one of the biggest authorities in their lives, they will do the same with other authority figures and other commands or requests. It also helps to withstand peer pressure: strong-willed (stubborn, pigheaded, obstinate) children will not give in as easily as others who are comfortable with compliance and following others’ lead. Strong-willed people are more likely to stay on the path they want to follow, despite being told they won’t succeed, or that society will not approve, or that it is impossible. They will just keep on going.

On the other side… I was like that. Well, probably a bit more obedient. After all, I did clean my room. Or maybe my parents were less willing to debate with me, than I am with my kiddos. In any case, I’ve heard enough stories of me not giving in one inch as a kid, to know I was fairly stubborn. And still am. I do believe that being pigheaded has helped me to be daring and just take the risk in my academic, personal, and professional endeavors. It has allowed me to change jobs and professional paths, to live abroad several times and, finally, immigrate and establish myself with my family in the US (my husband is American).

I want my children to take risks, to study whatever they really want, without fear of what other people may think or how much money they will earn (or the money they won’t earn), or how hard it is. I want them to go ahead and live abroad and face different cultures and life styles. I want them to work, intern, and volunteer in anything that calls them. I want them to become self-advocates and request the accommodations and services they deserve and need.

I don’t want them to be obedient. I want them to decide what they want to do, and to think twice before following orders. I want them to take advantage of their thinking styles, of the unique wiring of their brains. I don’t want them to extinguish their sparkle and doubt themselves and their decisions. I am not raising them to be my “good” compliant son and daughter. I’m raising them to become autonomous adults, and independent thinkers. Leaders, not followers.

Who do we tell our children that they are?

Who am I? The answer depends in large part on who the world around me says I am. Who do my parents say I am? Who do my peers say I am?
– Beverly Tatum

Neurodivergent people are at risk of mental health issues, partially because of the rejection they encounter in neurotypical society. Or the need to always go the extra mile to accommodate neurotypical feelings/customs/ideas. And even that is not enough. They continue to feel misunderstood and at fault for everything—for more on whose fault it is, read this great post by Autistic Not Weird.

We, parents, shape our children’s first experiences. We are also the people who are closer to them for the longest periods of time. We have an outsized influence in how they see themselves—we are their first mirror. What will they see through us? Will they see someone worthy of love, full of potential? Or a defective, damaged being?

 

Beverly Tatum wrote in “The Complexity of Identity: ‘Who Am I?’”:

“Who am I? The answer depends in large part on who the world around me says I am. Who do my parents say I am? Who do my peers say I am? What message is reflected back to me in the faces and voices of my teachers, my neighbors, store clerks? What do I learn from the media about myself? How am I represented in the cultural images around me? Or am I missing from the picture altogether? As social scientist Charles Cooley pointed out long ago, other people are the mirror in which we see ourselves.”

Who am I
The picture is of text, reading: Who am I? The answer depends in large part on who the world around me says I am. Who do my parents say I am? Who do my peers say I am? What message is reflected back to me in the faces and voices of my teachers, my neighbors, store clerks? What do I learn from the media about myself? How am I represented in the cultural images around me? Or am I missing from the picture altogether? As social scientist Charles Cooley pointed out long ago, other people are the mirror in which we see ourselves.

As Tatum mentions, it is not only parents who influence the self-image of a person. Peers, teachers, neighbors, store clerks, the media and other cultural images matter. We can directly monitor our own voice, expressions and behavior toward our children. But those teachers, peers, neighbors… they will base their reactions to our children on our behavior. We set the tone that determines how others relate to our children. If we’re disdainful, demeaning, hurtful… they will follow suit. If we show love and respect to our children, they will know our children are valuable to us. If we speak to their teachers and peers and neighbors in a way that shows understanding, patience and hope, they will see our children through the light we turn on. We filter their view.

What are we going to do? How will we behave?