Santa… yeah, no.

So… we didn’t teach our kids to believe in Santa.

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In Mexico, where I’m from, kids get presents from the Three Wise Men (aka the Three Kings) on January 6th. Because my husband is from the US, we do both Santa and the Three Wise Men. “Do” as in we label some presents with “from Santa” or “from the Three Kings.”

I never believed in the Three Kings, or stopped believing very early, since I don’t remember ever believing. What I was told was that my siblings (I have seven, all older than me) were not able to keep the secret. I never felt cheated out of a fantasy and don’t yearn for that magic. It was always a surprise, anyway, from whether “they” would “come” and leave presents for us and chocolates in our shoes, to what those presents would be. My husband did believe in Santa but doesn’t remember when or how he found out it was his parents.

We didn’t teach our kids to believe in either Santa or the Three Wise Men. We were always very open about it and they saw us label the presents many times. We’ve told them the story of St. Nicholas and how he gave stuff to children and how the tradition of Santa is a remembrance of his generosity. And we explained that this is a Christian tradition and that kids in Mexico receive presents from the Three Kings because they took presents to baby Jesus, etc.

Now… that doesn’t mean they actually understood… a couple of years ago we were walking in the mall and the topic of Santa came up and I asked my daughter: “Do you believe Santa is real?” “Yes, of course” “Hmmm! and how do you know that?” “Well, he brings me presents!” “NOOOOOOOO we’ve told you it is us!!” A new series of explanations ensued.

I’ve been told that am I/we are overthinking it; that it would be so much easier to “allow them to feel that magic.” Hmmm. There are a few things. One is that we have made a point of not lying to our kids. Not bad lies, not white lies. Not “I will be back in a little bit” when you’ll be away a couple of days. And no Santa and no Three Wise Men/Three Kings.

As an aside… one type of lie that I did tell my son several times was empty threats (“If you don’t take this toy away from the table now, I’m going to throw it in the trash.”) During the period when I was trying to force him to clean his room (I wrote about this in a previous post), one day we spoke about the whole situation. He, very distressed, told me that another thing that was extremely upsetting to him was to think that I could come at any point and take his toys away, or throw away his clothes. I felt awful. I realized I was saying all these empty threats and I was not putting that much thought into them, didn’t even realize I was doing it. But my son, on the other side, was feeling their full impact. I stopped. I was actually thinking about that this week, and asked him if he remembered those threats, and if I had done anything like that since we spoke about it. He said no, I don’t do it anymore. And, by the by, the Santa belief includes empty threats galore “he knows if you’re a good or a naughty kid, and if you’re not good you’ll be given a lump of coal!”

Teaching your kids to believe in Santa or the Three Wise men (or the Tooth Fairy or whoever else) is not a passive lie. It is an active lie. It involves planning, and actions to cover, and even embellish and enhance the lies. The lying is there when you encourage them to write a letter, and suggest what to write on the letter, and when you tell them that Santa will know if they’ve been nice. When you keep a long-running lie, you always need to be aware, so you don’t end up telling something in front of your kids by mistake. Since I just cannot lie in a very effective way or for very long, having my kids believing in Santa or the Three Wise Men would not be easy. It would be stressful for me, and at some point, I know I would mess up and tell them something that leads them to find out they don’t exist. I know some people are thinking that I’m exaggerating, but I’m truly not. It would be exhausting, too.

We also have an issue with the idea that Santa brings you presents if you’re “good.” So, what about kids whose parents cannot buy them presents? What about other kids who have tons of money? Does that mean you’re a better kid than some but not as good as the others? And why does the awful kid who calls everyone names and steals stuff at school get so many presents? And does Santa hate kids who are not Christian or Catholic? Why are the Jewish kids not getting anything for Christmas? And an added complication with following traditions from two countries/religions: Why is it that the Three Kings don’t give presents to our neighbors? And why is Santa not bringing anything to their cousins in Mexico?

An additional factor is that, since my daughter is autistic, and tends to think literally—as does my ADHD son, to a degree—I thought it was too complicated to explain as a fact (this would really lead to a very elaborate lie!). Also, my husband is atheist (I’m Catholic) and we’re raising our kids with no religion (but yes following Christian/Catholic traditions), so the explanations can be quite lengthily if you have to go from Santa to the creation of the universe (“Some people believe that God…”). And both children do ask all sorts of questions and ponder on the answer and one question leads to three more, and those to ten, and so on.

(My son is reading this and told me there were other questions he had when he was little, though he didn’t believe in Santa: Considering, he says, that there are around a billion people who celebrate Christmas around the world, how would he be able to go to every house in just ~25 h? And how would he be able to eat all those cookies? And fit into all those chimneys? Is Santa a stalker?).

I found a discussion at Autistic Not Weird that includes the idea of finding it unsettling that a stranger will enter your house at some point on Christmas Eve. A mom, Gwynne Miriam, wrote about her reasons to tell her autistic daughter that Santa is not real in The Mighty. I know that many people share our points of view (tons of others don’t, I’m fully aware). Then… there is the idea of not telling other kids, right? A couple of days ago I read a discussion started by Rabbi Ruti Regan on how Jewish kids are forced to support the Santa lie. That is a whole other level, if you ask me. Not only are you concealing but you are enforcing a belief where YOU don’t even get anything. Were you naughty? Are you punished for not believing?

Anyhow… Let’s leave it at we have our reasons to not having told our kids Santa or the Three Kings were real, but they won’t tell yours that the presents are really from their parents. Deal?

The city where we live has the coolest Santa, which rappels down a building with his elves at the beginning of the holiday season.  Santa and two elves can be seen rappelling down in the picture.

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.

I’m not a warrior, and they are not a burden

Don’t call me a Warrior. My children are amazing.

I’m sure you’ve seen the memes and articles where it is proclaimed that moms of children with “special needs” are “Warrior Moms” or “Supermoms.” Or, of course, “Autism Moms.” Many of those are actually written by a self-proclaimed Warrior/Super/Autism Mom. The idea behind this is innocent enough. It is meant to support moms and cheer them up as they go through this… and here we go… this difficult, awful path, with the moms being exhausted, depressed, hopeless, helpless. This is similar, in a way, to the game played by moms of “typical” or “typically developing” or just “normal” children that also cheer each other non-stop. But. It’s not helpful. Or fair to our children.

A couple of years ago, a mom friend told me “I just don’t know how you do it!” I asked her what she meant and she said that well… my daughter… being autistic, but so smart and… well, how did I dealt with both things at once? (I’m paraphrasing). I told her that, well, we sent her to summer camps that were stimulating and she liked, but she had an aide. That summer she had been to a math camp and then went to a science camp, but always with someone keeping an eye on her. Just like during the regular academic year, when she attended an integrated class (“general ed,” with children with and without disabilities) and had an aide. (Note: she no longer has the aide at school). Both of my kids (one autistic, one with ADHD) went to those camps and some others that were more fun-focused.

Many people look at “autism moms” or “special needs moms” and think very highly of them. But it is mainly because their children are autistic or have some other disability. The underlying message is: “This is awful. That child is a burden and I would not be able to deal with the whole thing. Those moms must be special.” And, nope. My children are not a burden, not more than any other child their age. Comparing my two children, I cannot say that one is incredibly more difficult to raise than the other. Or much more difficult than my nieces and nephews (none of whom has a diagnosis) were for my siblings.

Honestly, I would like to tell some of those admiring parents: “Actually, I truly admire YOU, because Johnny seems like a handful…” And yes, I’m sure we all know kids who are nice and that you like, but you would not want to parent. Some children seem to always always be in a bad mood and look down on absolutely anything, and complain about everything. Or plain misbehave, throwing their food, kicking people or what have you not, with no diagnosis in the horizon.

Anyway, there are children that because of their personality or general mood make me believe their parents are the ones in a difficult situation. Or… did you think only parents of autistic or ADHD children face challenging circumstances? Nope. My daughter’s autism is not overwhelming. My son’s ADHD isn’t either. Yes, there are some difficult issues, but that you can have with any child, with or without a diagnosis, with or without “special needs.”

I am not blind to the fact that some parents of children with disabilities do have sleepless nights. Maybe because the child is not falling asleep due to anxiety. Maybe the child is asleep and the parent isn’t, because they worry about their child. Maybe because their child also has another neurological or medical condition. However, you cannot assume that this is always the situation and for all parents or caregivers of children with a disability. All children bring moments of joy and gratefulness, even if they are rare or infrequent.

The images and phrases of “Warrior Mom” elicit the idea of a constant fight. Those of “Supermom,” superhuman strength. And they necessarily convey the idea of a tough, overwhelming life, with no or very few rewarding moments. And they imply that such a hard life is because of your children.

If we don’t want to be seen with pity and to have our children be seen as a burden, I believe we as parents must be the first ones to state that we don’t need such pity. Compassion and understanding, yes. For instance, when our children are in the middle of a meltdown, which will probably look to you as a temper tantrum, yes, give us at least the benefit of the doubt. Don’t lecture us and don’t look at us reprovingly. Our children may be feeling overwhelmed by sensory stimuli.

A last point: Many of these campaigns underestimate or nullify fathers. If we want fathers to fully participate in raising their children, we cannot and should not ignore them.

I am not a Warrior Mom. Or a Super Mom. Or an Autism Mom. Or a Special Needs Mom. Or an ADHD Mom…. you get the point. I’m just a mom.

And my children are not a burden, they’re a blessing.

IMG_7459
A boy, with short hair and glasses, is on the left, sitting at a table and looking at some contraption. His sister, with long hair, is on the right, also sitting at the table and looking at what he’s doing. The table has a robot, a robot building kit, a laptop and an iPad. They participated in a research study to see how children play with robots and how they would want to build them. I disclosed both of their diagnoses to the researcher, who said she wants to have all children play with her robots, so having two neurodivergent kids there that day was great.

 

Originally published, in Spanish, August 7th, 2015. Updated to reflect the diagnosis of my son, and clarify some points that don’t translate very well.

 

My daughter doesn’t suffer from autism

There are a couple of narratives that I believe show a very erroneous and irresponsible perspective about autism. One is the type of “positive” stories that present it as amazing that a given autistic person sings beautifully, another is a magnificent concert pianist, another runs like the wind… The idea that autism, by itself, could interfere with this type of skills or abilities is not fact-based.

Actually, it would not surprise me at all if there were multiple gifted mathematicians or musicians among the autistic population. Autistic people like and understand patterns and mathematics. Math is closely related to music, and patterns are intrinsic to both math and music. To top it off, there are many autistic people with “absolute pitch”—the ability to recognize and reproduce the pitch of musical notes, effortlessly and without a reference note. Not everyone who has an absolute pitch is a musician, and not all musicians have absolute pitch—some studies estimate about 20% of musicians have it. But it is advantageous to have it if you work in anything related to music. It is believed that there are more people with absolute pitch among the autistic population than in the non-autistic population. In a way, then, autistic people have an advantage over non-autistic people in this respect.

The other type of stories are those that support negative beliefs about autism. Those narratives state that someone became an excellent musician, or writer, or software engineer, “despite suffering from autism.” The headlines commonly say “…so-and-so defied autism” conveying the idea that autistic people need to “defy” or “overcome” autism to be able to succeed.

I think those journalists have not read much about autism. If they had read some, they would know that autism doesn’t interfere with singing, running, math skills… (I know aphasia, apraxia, intellectual disabilities, etc. can co-exist with autism, but those are not part of the diagnostic criteria, they’re possibly there, they are not a must. Additionally, many non-speaking autistic people can and like to sing, and singing and talking seem to be ruled by different brain activities, but that is a topic all by itself that I’m not exploring here). Instead, if they had read about autism, journalists would know that most of the challenges related to autism are in the social arena, mostly related to communication, and especially social communication, including body language, jokes and sarcasm.

A characteristic of autistic people that can be considered as either positive or negative is persistence and tenacity. You can consider that a person is “obsessed” with something, or consider that that person is extremely perseverant. Nobody would deny that perseverance is crucial when one needs to practice the same symphony over and over again, repeat the same dance step until you are exhausted, or keep coding all night.

Looking at the other side, being too social may have placed hurdles along the scientific, technological or artistic path on many people. It is more likely that you won’t be awarded the Nobel prize or create a master piece if you prefer to be chatting away, enjoying your family life, hanging out with your friends and it pains you to leave them to go to your studio, lab, or office. Your chances of achieving great success increase if it doesn’t bother you to miss your own birthday party, because you are about to discover cold fusion.

Talking about social hurdles, there was a news piece where it did make some sense to mention “despite her autism”: Alexis Wineman becoming Miss Montana in 2012. One does associate that type of contests with soft skills, with being able to chit-chat and enjoying small talk while smiling at everyone and looking at them in the eye. But even then, they had to say that she “overcame” autism. Please! She’s still autistic!!! And it is possible that she has her autism to thank for the perseverance and discipline required for modeling, and for maintaining a slim, fit figure.

The autistic person I know best is my daughter. She is very strong in math, started to read and write very early on, has amazing spelling skills, sings pretty well for someone with basically no training, has a good sense of colors and is good at drawing, is very smart, and so on. I would not be surprised at all, if she excelled in science or art. I don’t doubt she will be able to attend a good college, and that she’ll be a good student and later on succeed in the workplace. And… you know what? I don’t doubt a lot of that will be thanks to being autistic. She won’t “defy” autism. She’ll take full advantage of it.

Butterfly
The image shows a coloring fabric in the form of a butterfly, a Christmas gift from a couple who are dear friends of ours. She painted it between Christmas Eve and Christmas day, 2014, when she was 6.

 

Update:

More and more companies have started to realize that autistic employees are a great asset for their companies. There are now several programs dedicated to train employers how to support autistic employees, as well as preparing autistic individuals for the challenges of the workforce.

And, by the way, Dan Aykroyd, who disclosed his diagnosis a few years ago, has mentioned that he created his Ghostbusters movies thanks to his obsession with a real ghostbuster, Hans Holzer, and with ghosts in general (Aykroyd does believe in ghosts).

Of course, I must also mention Dr. Temple Grandin, who believes being autistic has given her special skills, like her talent in technical drawing, as well as the keen observational skills that allow her to determine what situations could be a risk factor for accidents. She’s able to picture what reaction animals will have to given factors. Some of the factors she has mentioned include light reflecting off a surface, and the difference between light and darkness, which can scare animals. Thanks to her work, cattle slaughter practices has become less traumatic and more humane.

 

Originally published, in Spanish, April 19th, 2015.

The right to get angry

Autistic people are asked to “not get angry” and calmly explain why a treatment that can be fatal is not appropriate to “change” people like them.

A girl I follow in Facebook wrote against the “treatments” to “cure” autism and how they affect her, as an autistic person. She also mentioned that some well-intentioned people keep recommending her to do this or that because “it will help you.” Obviously, she doesn’t like that, and it doesn’t help her. (A translation of her post is here).

Autism doesn’t become a disability until society demands behaviors that are not natural for autistic people. That is, when we demand that they look at us in the eye while they listen to us. Or wear clothes with tags, and stop complaining about the tags bothering them. Or that they eat everything we offer them. Or that they enjoy to noisy, crowded parties.

Autistic people, like any other marginalized society suffering discrimination, are requested to explain things on behalf of their whole community over and over again. And they’re asked to “not get angry” and calmly explain why a treatment that can be fatal is not appropriate to “change” people like them. (Or that wanting to change them is not appropriate or desired, period).

Non-autistic people are supposed to be super empathic, right? Why is it, then, that we cannot believe them? We do the same with all types of people and situations. The supposed neurotypical empaths overwhelm everybody with unsolicited recommendations and easy answers we discover in ten minutes, and we want to fix in a second situations people have been living with for years. We don’t stop to think that, if we were able to discover the solution in ten minutes, they probably were able to do so as well.

People with different types of disabilities, and populations that are marginalized because of their sexual orientation, ethnicity, native language, nationality, etc., don’t have to be everyone else’s teachers. As a Latina, who is an immigrant in the US, I should not have to explain that discrimination against immigrants and especially “Mexicans” (who may be Argentines, Colombian, Salvadorians… we all look the same) upsets and scares me. A wheelchair user should not have to explain why a ramp is necessary. And an autistic person should not have to explain why they don’t want to look at others in the eye.

Many autistic people have a wonderful way to explain their feelings. There are numerous blogs, columns, articles and books available. Use them to find out what they need or want. We can read in those texts why something is frustrating, why they are scared of a given thing, why they don’t want to participate in certain activities. Don’t overwhelm the person that is trying not to think the world looks at them as defective. Or compare them with a migraine. They don’t need you to remind them they don’t fit in. They live with that knowledge.

What you can do is support them. Ask them what they need from you at that time. Thank them when they write something that helps you understand them better. Be kind and consider them as equals. Because they are.

 

Originally published July 29, 2018, in Spanish.

Talking about MMS…

…”please understand: THERE ARE NO CURES OR MIRACLES. When someone offers you a cure or a miracle, WALK AWAY. “

The text below was written by a girl I admire, Sandra Lopez. She is studying medicine, is autistic, and has to hear a myriad of comments and advice from “well-intentioned” people, as she explains below. The “Mineral Miracle Solution” or MMS she mentions is a “cure” for autism (and a ton of illnesses and conditions). MMS is chlorine dioxide, and its use can result in death. Its use is forbidden, and this naturally has given rise to a group that believes in an international conspiracy to prevent people from getting “cured.” Another “treatment” Sandra mentions is DAN, which is also forbidden. Many believers interact in social media, and give each other advice, share stories about a loved one being “cured,” and, of course, they sell it.

 

Sandra writes:

Talking about MMS: there is something that worries me more, and that will ALWAYS be the perfect excuse for these quacks to win: the lack of acceptance shown by the family of the diagnosed person, and the lack of respect toward people with a diagnosis.

For many years now, I have received messages from parents telling me how much I can “improve” if I follow a gluten and casein free diet (without me having any intolerance toward either, as I’ve been able to determine with medical tests), the DAN protocol or MMS. And so many crazy things they can think about… throughout the years, my patience has been reduced to zero.

I still read about parents who say they love and adore their child (and I am sure some do; others… I’m not so sure) but who, if autism had a cure, and someone would guarantee them a “recovery,” would do everything they could to pay for it and “cure” their child. That is a half-hearted acceptance. And I’ve heard from other people on the spectrum who have expressed something similar.

Autism, with its implications, is not easy (as I’ve said countless times). More so, in a society where EVERTHING is based by and for neurotypicals (or that believe they are neurotypical). But, please understand: THERE ARE NO CURES OR MIRACLES. When someone offers you a cure or a miracle, WALK AWAY. It is not good for us. And no, NOT EVERYTHING IS ACCEPTABLE IN AUTISM.

Many articles have been written in the last several years about the consequences of this type of treatment. Cases where people died, suffered an intoxication, or irreversible metabolic complications. But, or course, the people who sell them keep winning and increasing the number of their followers, who believe anything they say, without questioning. Just like it happens with the anti-vaccines movement.

And the irony… this paranoia about “big pharma business”… please. Selling miracle therapies is a GREAT BUSINESS. If you don’t believe me, check how much it costs to follow those protocols. People who sell them are not good Samaritans.

I get it; all parents have a thousand expectations about their children. And then we arrive, carrying a diagnosis, and ruin their plans. The idea that a cure exists, and having someone offer the opportunity to “cure” us, is tempting. But think about us. We are here, and the last thing we need is for our own family to reject us, under the disguise of “wanting to see us get better.”

No, not everything is acceptable in autism. It is not acceptable for a child to die or suffer complications because of these therapies, or because their parents refuse to vaccinate them, as they’re scared of a diagnosis.

What we do need, instead of “recovery,” is to be given tools and support. But as long as you don’t accept your child and work with the child you have, BELIEVE ME, these autism quacks will keep gaining ground, becoming rich at the expense of our health, and will keep making life difficult to us…

 

Originally published July 28th, 2018, in Spanish.