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.