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

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

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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 medical or medical condition. However, you cannot assume that that is the situation always 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 diagnosis 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.

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?

Why do we teach our kids to “behave”?

Are you teaching your child to “behave” for their benefit? Or yours?

Some behaviors or characteristics of autistic people can be dangerous. Like not sensing danger, and just darting toward a busy street. Or leaning “too” forward on a banister, not recognizing one can actually fall. Some others can get them in danger or can endanger, say, priceless museum pieces. In that category I would put bumping hard into people, which could make the other person respond in anger and actually hit you. Or leaning against a showcase full of antique, glass works of art, in a way that could make them break.

But in many other cases, the behavior is not dangerous, probably makes the person happy, or helps them deal with anxiety. We don’t try to change that behavior for the wellbeing or safety of the autistic child. We do it for us. I participated yesterday in a survey that made this fairly clear. It contained some statements one had to agree or disagree with. Some of the statements read something like this: “We don’t go out in public because my child’s behavior embarrasses me.” “I have to constantly explain my child has autism because of his or her behaviors.”

 

 

This reminds me of the typical scene of a child throwing a temper tantrum in the middle of the supermarket. What many times happens is that the parent (normally the mother) is close to the child trying to control the situation, and looking around to see the reactions of the people around. If there is nobody around, or people just smile and go away, then that’s fine. But if people start lecturing the parent, looking at her disapprovingly, and so on, what can and does happen too often is that the child gets punished: spanked in some cases, yelled at, or carried out of the store while the child is trying to free themselves (which can be dangerous, by the way, depending on the agility and strength of the child). And this is the “approved parenting style” in our society.

One of the problems with this is that that societal approved parenting styleMR does not work (and by the by, “time outs” don’t work either). One response that works in the long run is to ignore the child, though how you do it matters… and note that here I’m considering we’re speaking about a temper tantrum, not a meltdown. For a meltdown, you need to know what caused it and what helps the child the most.

Now, if you do a quick search on YouTube, you will see videos shaming parents who are actively ignoring their kids… and also shaming parents who are physically punishing their children. Meaning, you are never free of criticism. Unless you never ever take your kid out into a public space.

The biggest problem is that you pay more attention to the feelings or to the approval of people you don’t know at all. You put their feelings well above your child’s. And you will never see these people again! They will gladly post a video of you and your child to happily shame you. And you’re supposed to love your child more than anything in the world, yet are more invested in gaining the stranger’s approval than in not harming your relationship with your child.

 

Is it worth it?

 

NO.

 

Just stop paying attention to the other people.

 

If your child is on the spectrum (or has ADHD or any of the other conditions that could lead to similar behaviors) the “embarrassing” behavior can happen when they are 2-3 years old like it happens with “neurotypical” kids, but it can also happen when they’re 6, or 9, or 12. So what?

Sure, that person is looking down on you. Sure, they’ll get home and you’ll be the dinner conversation. Sure, they’ll feel superior to you because that would never happen to them, because their child behaves. They are raising their child to obey, and respect their parents, not like these new age/hippie/millennials/whatever parents who don’t know how to properly raise a child. They don’t know you, don’t know your story, don’t know what you’ve tried or not, what has worked and what has backfired. How much you slept last night or if you slept at all.

 

And they don’t care.

 

You. Should. Not. Care. Either.

 

Let them think whatever they want. Let them speak about you. You don’t know them and you would not want to be their friend anyway.

 

Care for your child. Your child is the one waiting for you at home. Is the one having dinner with you. And the one you hug in the mornings, and kiss good night when they go to sleep.

 

The rest of the world is out there, outside your home, and does not matter.

Survey on autism (by Autistic, not Weird)

A few weeks ago, I participated in a survey about autism–perception in the general population, how autistic and non-autistic people feel about autism and how it effects their life, etc. I participated as the non-autistic relative of an autistic person.
 
Chris Bonello, creator of “Autistic, not Weird” created this survey, and now he’s reporting his findings. He speaks, among other topics, about the concept of empathy, mentioning that there is a difference one has to consider: “Cognitive” empathy is being able to read what others are feeling and respond to those feelings, while “affective” empathy is feeling sympathy for someone you know is suffering.
 
This reminded me of something that happened last week. I was watching M play a videogame and she told me her persona/character was sick. Then she commented: “I need to get to the hospital before I get anyone sick.” 🙂
 
I have my own thoughts about empathy… this is a link to my post on that subject.

Here are the results of the survey.