Look me in the eye!

(originally published in Spanish, April 24, 2014)

Marisol's eye
Close-up of one of Marisol’s hazel eyes. She’s telling me hazel is not completely correct, because some people say they’re blue, or green, depending on the day, what clothes she wears and so on.

 

Autistic people hear this phrase over and over again. So much so, that John Elder Robinson chose it as the title of his autobiography. He found out he is autistic when he was 40 years old and was diagnosed with Asperger’s Syndrome. Before dedicating himself to autism advocacy and high-end car restoration, he was, among other things, the designer of special effect guitars for the band KISS.

Reading blogs and columns written by autistic adults, you will often find the same complaint: “Why do you force me to look at you in the eye?” This was interesting to me because, as far as I understand, when a behavior or characteristic occurs very commonly in a population that is so dispersed, there has to be some biological basis (note: I have a PhD in life sciences, and worked in research in that field for over 15 years). A more pertinent question is: why do non-autistic people need to look at people in the eye?

Non-autistic people “read” emotions when we look into someone’s eyes. We can know if the person is believing what we’re saying, if they’re happy, sad, angry, getting bored, etc. This has physiological reason: our pupils become enlarged if we are happy or excited, but decrease in size if we’re angry. We use our eyes to flirt, and this can also be unconscious: heterosexual men consider women more attractive if their pupils look larger. And it’s the same for heterosexual women assessing men.

Socially, it all depends on the culture. In Europe, the US and many other countries, looking at someone in the eye means, in most cases, that you’re paying attention, that you’re trustworthy and that you are respecting the person you’re speaking with. But in other countries and cultures, looking directly in the eye can mean aggression, impertinence, or disrespect, especially if the person you’re looking at is your “superior,” socioeconomically speaking. In other places, it would be scandalous for men and women to look at each other in the eye.

Anyway, in countries where we it is customary to look at others in the eye, it is estimated that we look in the other person’s eyes almost half the time (43%).  Second in line are the lips (12%, a total of 56% between eyes and lips). We use the eyes to describe others’ emotions, or even their personality.

Reading about this, I found a great phrase, in a column that had nothing to do with autism, but was focused on non-verbal communication. It was written by a woman who provides consulting services on corporate communication (“The Politics of Eye Contact: A Gender Perspective”, by Audrey Nelson). The phrase reads:

Why would we want to look into another’s eyes if not to assess what that person is feeling?

Exactly. Why?

Many autistic people have stated very clearly that sustaining visual contact bothers them and doesn’t provide them with anything. They are not using the eyes to “read” other people’s emotions. As it happens in many other areas, we, the non-autistic people, need to accept that it is possible that other people, in this case autistic people, don’t “function” in the exact same way we do. At the very least, we should grant them the same tolerance and understanding we give people from other cultures, where it is rude to look at people in the eye.

John Elder Robinson, as I mentioned above, felt bullied with that phrase. Amy Sequenzia, a non-speaking autistic advocate, who is an amazing writer, says she feels autistic people who don’t look at people in the eye are assumed by non-autistic people to be “low functioning” or as having intellectual disability. Way too many autistic people are trained to look at people in the eye, and Sequenzia believes that only produces anxiety. Lydia Brown, another autistic adult, who advocates for the rights of disabled people, asks us to just stop. Another autistic person said:

“…just because I am not making eye contact with you does not mean that I am not listening to you or paying attention to you. I can concentrate better not having to keep eye contact at the same time. I tell people, ‘You have a choice. Do you want a conversation or do you want eye contact? You will not get both unless I am comfortable with you and do not have to concentrate so much on the eye contact’.”

Researchers have been studying the reasons behind the lack of eye contact in autistic people. A study performed at Vanderbilt University showed that autistic children had issues processing visual and auditory information simultaneously. That could mean that for some autistic people it is difficult and stressful to hear and look at a person at the same time. One of the researchers, Dr. Camarata, commented “It is like they are watching a foreign movie that was badly dubbed, the auditory and visual signals do not match in their brains.”

Previous studies suggested other reasons, such as the finding by researchers at the University of Wisconsin that the amygdala of autistic people is activated when they establish eye contact. This could imply that eye contact is perceived as a threat, since the amygdala is where we sense fear. Another study, at Emory University evaluated the frequency at which babies made eye contact. They saw that the frequency at which babies who were later diagnosed with autism looked into the eyes of people decreased with time. On the contrary, the frequency increased in babies who were not diagnosed with autism later on.

A professor at the University of Illinois said that her autistic students looked confused and anxious when they were sustaining visual contact. Others would pretend to look at her in the eye, but later on told her they were looking at something near her eyes (such as light reflecting on her glasses). Another told her he was analyzing the size of her pupils. She considers that it also depends on the person’s mood and that, if a student is relaxed, it is more likely that she or he will look at her in the eyes than if she or he is stressed out. She was saying that only very few autistic students have told her that visual contact helps them receive or share messages, and most consider they are not good at “reading” those messages.

One of the myths with visual contact is that unless you keep eye contact, you are not paying attention. But many teachers have seen that even when [autistic] students seem to be “spacing out”—looking at the ceiling, the window, or something other than at the teacher, the students can repeat what they heard during the lecture, and put it into practice. This has happened with Marisol: her teachers have told us that sometimes, when they are doing math exercises (basic math, she’s 5), as a group, she seems no to pay attention at all. Later, she can answer similar problems, alone, and without making mistakes. I saw her in a similar situation during her diagnostic evaluation: she was slowly rocking herself, looking at the ceiling or the walls, and then would point at the correct answer.

And talking about Marisol… every so often we talk to someone, be it from the school district, or the government office that provides services to people with developmental disabilities, and they ask: What goals do you have for your child? Or even: What does your child want? Since Marisol is 5, we are her proxies, but if she were older the question would be: What do you need to enjoy a full life? This answer helps create a development plan, which can be a working plan for the school, with goals and deadlines. The goals have to be measurable, and many times it reads something like: “so-and-so will look at his or her speaking partner a given percent of the time, or a given amount of times.” This plan at the school is called Individualized Education Program or IEP. At some point, eye contact was a goal in Marisol’s plan. However, they saw it was not attainable, Marisol was simply not looking at people in the eyes. At that point, they changed it to having her “orient” herself toward the person that was talking to her, no longer caring what exactly she was looking at. It didn’t work very well either. Now, it’s completely off her IEP and will remain that way.

Why don’t want it to be in her IEP? First of all, I’m completely convinced this is biological and that is highly possible that it is extremely bothersome for her. Because I don’t believe she benefits from eye contact. In fact, it is very possible that trying to look at people and listening to them at the same time implies an effort and concentration that  probably exhausts her and decreases her capacity to perform a given task correctly. And because the word is changing in a hurry, and I don’t believe that, in the future, anybody will need to look at other people in the eye to be successful.

Where do I get this idea from? I work at a very prestigious university, with students and staff from virtually all over the world. The largest minority comes from Asia. It is common for me to enter an elevator, say “hi,” and receive no answer at all—no “hi,” no nods, no quick look at me—nothing. Many people from Asia, or other countries/regions of the world, or from some populations within the US, don’t look at me in the eye. And that is not a deal breaker. The social aspect, the “demand” for this “social skill” is decreasing as we get used to interact with people that doesn’t do it for cultural or other reasons. It is obvious that it doesn’t affect their performance or opportunities—after all, all those people I see in the elevator, the bus stop or in the cafeteria, are studying or working in an excellent university.

Another good trend is that faculty at my university, and many others, are working toward using “universal design for learning” and inclusive teaching. The idea is that there are differences not just between autistic and non-autistic people, people with a disability and people without. “Regular” people are tremendously varied in their learning styles. I’ve taken several courses and workshops on this topic, and they truly opened my eyes. I had been recommended in the past to avoid red and green on slides or research posters, in case there is a color-blind person in the audience. But now we are going beyond that. There are people who learn best by listening to a lecture, some prefer to read, some need hands-on experience. And professors that really want to have their message reach everybody, need to use all types of media. That means offering the same information in different formats, so that students can use whatever works best for them.

Within this trend, and required by law, is the support and acceptance of people with some disability. For example, if a student requires a service dog, the dog can go to class. If someone needs a computer to be able to interact in class, that is doable. There are a thousand possibilities and supports available. Among them, it is to really accept that some people will not sustain visual contact and that it doesn’t mean anything negative. We just need to get over our non-autistic (allistic) need for eye contact.

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Fear of heights

My little monkey is what I’ve called Marisol since she was very little. When she was a baby, she would get out of her exersaucer in a matter of seconds. We tried to record it to see how she did it because it didn’t seem an easy feat at all. We were never able to catch her in the act. She would also get out of her crib, no problem. She would climb furniture and seemed to be very much at ease in postures that for me looked dangerous or uncomfortable. For many years, we didn’t have any furniture that could be used as a launching pad, such as coffee tables, and ended up buying a climbing mountain that was in our living room for the longest time, to satisfy her sensory cravings.

Two years ago, when she had just turned 8 years old, we went to an open house for a climbing wall that is very high (50 feet). She went up the wall very fast, and climbed all the way to the top. Three years ago, when she was almost 7, we went to a very high (70 feet) ropes course  in a nearby city and she went on really eagerly, and moved around easily and fearlessly. Her dad, her brother and her have gone on the course a couple of times since then.

Recently, she decided she was afraid of heights. Now, I am actually afraid of heights. Standing on top of a chair freaks me out. Ladders? I’ve missed some “amazing, unique opportunities” to see a fantastic sight because I’m afraid I’ll end up in the hospital. Those glass floors in the CN tower and other high buildings? Nope. And yeah, those climbing walls and ropes courses are absolutely out of the question. So when a monkey like Marisol tells me she’s afraid of heights, I completely disbelieve her. We think it was more a matter of her trying to identify with me.

Trying to fit in is something we all do, in different ways. Some are innocuous, some are funny, some are worrisome. In her case, it just doesn’t make sense and it basically feels like it is against her nature. And very likely, her sensory needs. I feel it is not good when you try to minimize a big part of your personality and the way your body functions. Plus, having lived with fear of heights my whole life, I know it leads to frustration and it prevents you from doing really cool stuff (and potentially could endanger your life—think of getting out of a second floor if there was a fire). With her, I really didn’t like it because it would limit what classes she took, for example, or what games she plays. Plus I feel that if she kept it up, she could actually convince herself that she is afraid of heights and then she could actually become afraid.

We went back for the annual open house of the climbing wall near us and she half-heartedly climbed a bit. Then she got down and didn’t want to do it again, stating she was afraid of heights. This week we went to a children’s museum  that had a lot of activities for children, including a ropes course with a zipline, a climbing wall and a thing called a “you-yo,”  sort of a human yo-yo. She went on the “you-yo” and then on the ropes course, but when it was time to go on the zipline she froze. She was there for a while but was too afraid to let go and just got off the ropes course. The climbing wall was also a no-no.

We were talking to her, trying to convince her to try. I was telling her it is not good to be afraid of heights, I would definitely want not to have that phobia. Her brother and dad were giving her other reasons. Didier, her brother, was also telling about his experience, since he had just climbed the wall and gone on the zipline. We showed her when he was going on the zipline and her reaction was to yell “YAY, Didier, well done!” and still refuse to go. She only wanted to be on the “you-yo.” Boy, she’s a very, very determined little person, who stands her ground. I was sure she would be sad if she missed the opportunity–I doubt we’ll go back to that city and the opportunities to climb a wall or go to a zipline are not precisely plentiful where we live.

Finally she agreed to try the climbing wall. And you know what? She loved it! She climbed it a couple of times, happily and without fear. Then it was time for the ropes course, with the zipline. We were crossing our fingers that she would not freeze like she did early and would decide to give it a try. She did do it!!!! She didn’t go all the way to running to gain momentum and go rapidly, like Didier, but she did! Wow, that was a victory. She was very happy and proud of herself. And went back to being my little monkey!!

The terrible twos (and threes, and fours, and fives…)

When Didier was two years old, I thought we had been spared the “terrible twos.” Didier had always been a very nice boy, and his teachers adored him. But, alas, the terrible twos did arrive, when he was two and a half. I was very pregnant with Marisol and that’s not the ideal time for a little two and a half year old to throw a temper tantrum for this reason or another.

I started reading about this age, and understanding why the temper tantrums were happening comforted me. For those who have no children, or have forgotten about it, that stage is when children are undergoing a transition. They can move, though not with the freedom they crave. They have a thousand thoughts, wishes, feelings, which they are unable to articulate properly and they cannot even fully control them. At the same time, they discover that they cannot do everything they want (they couldn’t before either, but they didn’t have the capacity or desire to do it yet, so they didn’t know that they were not allowed to do it). They don’t know what decision-making capacity they have. This turmoil is manifested as temper tantrums, anger, frustration, etc.

Although it is obviously easier said than done, what experts recommend is, first of all, to remain calm. One should count to ten, a hundred or a thousand, if necessary. Also, parents should be mindful of the fact that the problem is the temper tantrum itself, not the child. And we need to let them know that. Hug them if they cry, for example, or try to distract them, tickle them, whatever works. We also need to make sure the children are sleeping and eating properly, because a frustration temper tantrum will turn into a hunger temper tantrum and that is a major, major temper tantrum (they also hate those tantrums, but cannot control them at that point). Ah! And another biggie: not to tell them “no” but say instead what they CAN do instead. That is for me the hardest part.

Anyway, with Didier, some days were extremely frustrating. I took him with me a few times when I went to buy items for Marisol’s room, such as a rocking chair. The store was half an hour away and we had to cross the border between Mexico and the US (fortunately, we were members of SENTRI, a program that prescreens you, so that you can go through extremely fast. Instead of waiting hours at the border, we would cross in a few minutes). At the store, he would try to play hide and seek with me (and I was unable to see my shoes at that point!), so he would basically disappear and it would take me several minutes to find him. Or would refuse to leave after we shopped. On occasion, I had to carry him out of the store, me with my huge belly and he being strong and agile. Then we struggled as I tried to buckle him into his car seat and he resisted. Several times I drove back fighting tears and with the music loud enough to avoid listening to him yelling and to calm myself down, until he also calmed himself down.

Some other times, he would request food, crackers, for example. We would give him the crackers and he would yell “I don’t want crackers!!!” we would take them away and then it was “I want my crackers!!!” … it was never ending. The worst naughty tricks were when he didn’t want to get out of the car. It was extremely exasperating. We lived in the desert, the real desert, meaning he was doing this at 120 degrees. The only good thing was that we did have a garage, the car was not right under the sun. We would open a door and he would run to the other door. We would open that door and he would run to the first one. We were not going to hit him and we couldn’t force him out without hurting him. So we would have to go into the house, come back quickly, see if now he wanted to get out and go into the house, and so on. After what seemed an eternity, the terrible twos finally stopped. Didier went back to being his cute self, full time.

Then, it was Marisol’s turn. But the terrible twos arrived and haven’t gone away. I’ve thought long about it and believe that is related to language. As she has acquired more language and communication skills, and can at least say if she wants something or not, the struggles have decreased. There are still a myriad things she cannot explain; many times we see her anguished, on the verge of tears and she cannot tell us very well what is going on. Other times, she starts running toward a corner of a room, or to her bedroom, or to see her dad, if the problem was with me, or vice versa. She also fights with Didier, and Didier has had to learn to be patient (or, more exactly, he’s learning) and to try not to use “no,” which is still a trigger.

 

IMG_0030
Didier and Marisol, sitting on a log inside a sort of building made with sticks. There is snow on the ground. He is looking at the camera, smiling, while she’s looking at the snow in front of her.

In addition to the language, a factor that plays a role is Marisol’s difficulty dealing with abrupt changes in plans. Marisol is actually not extremely rigid, and calmly accepts to be showered or not, or to eat now or later. When she gets home from school, sometimes she goes straight into her room to play. Other times, she wants to stay outside, playing with the snow or mud. On other occasions, she wants to watch TV, or use her tablet, or whatever else strikes her fancy at that time. But sometimes it upsets her not to know what will happen or that something she believes will happen is cancelled. For instance, when I have to run errands, I take both kids with me. We go to the shopping mall, then to the supermarket, and so on. At the mall, I’ve been parking by Target and go through the store to go inside the mall. This means that when we’re in the mall and walk towards Target (I believe) she thinks we’re heading to the car and then home. The last time she reacted badly to a change of plans, was one day when, as we were walking into Target, I realized I had forgotten to go to another store, so I told them that we needed to go back. Her answer was to throw herself on the floor and cry and cry. She did go with us afterward, but in these situations you face the unknown: how long it will last, how intense her reaction will be, if she’ll take off running toward the store or the parking lot or what. After that day, what I’ve done is to write down on a sticky note the places we’ll go to, and I cross them out or have her cross them out as we go. Many autistic children, even when they’re fully verbal, understand better when the instructions, questions, etc., are written, or they are easier for them to remember. And many autistic kids start reading fairly early, as was the case with Marisol, and that facilitates communication. For children that don’t read well yet, you can use pictograms (little drawings or icons).

This weekend I’m going to travel, I have a conference in another city, some five hours away. What I’ll do, as I’ve done before, is to write a sort of “social story”—an illustrated story, with pictures or drawings, where I’ll write what will happen using short phrases. Since Marisol likes dates and knows how to count the days, I also add a small weekly calendar and write on it what will happen every day. Sometimes we need to read those stories several times with her, or have her read it to us beforehand; sometimes it doesn’t seem like she needs them. But they’re there, just in case. So… wish us luck!

Originally published March 26, 2014 (in Spanish)

A neurodiverse family

I spent several years proclaiming that it is not more difficult to raise an autistic kid than a “neurotypical” one. My source was my experience, with Marisol being autistic, Didier being “neurotypical.” But, here’s the thing… Didier is actually not “neurotypical.” Two years ago he was diagnosed with ADHD (attention deficit/hyperactivity disorder). So, let’s revise: It is not harder to raise an autistic child, than one with ADHD.

When Didier was in preschool, he would take for-ev-er to get ready to go home. Everything would take too long. All his classmates would be gone and he was still putting on his shoes or fixing his backpack or who knows what. It was a good exercise in patience for us. One time, I arrived to pick him up and he was eating his lunch, a sandwich. I decided to wait for him. It took him twenty minutes. TWENTY. Who needs twenty minutes to eat a simple sandwich?

We would ask him to perform simple chores at home: bring me this, take that. He would forget halfway up the stair and would just start playing. Showering was, it seems, an incredible adventure in his imagination, because he spent hours in the shower. Drying himself, too. Any one step of any routine could take forever.

His preschool was a Montessori. His teachers told us many times that he was a good student, he didn’t require supervision to do his tasks. They had a routine of activities in different areas and, according to them, Didier was one of the few students who went through the full routine, and without needing any prompts or help. During his second year, other students would ask him for help if they didn’t understand an activity, and would ask him before asking the teachers. One day, a new student at the Montessori only spoke Spanish and was very sad/scared. The teachers called Didier to help out, and he comforted the kid and translated for him. He was a very helpful classmate.

In first grade, his weakness was reading and writing. At school there was a group for the children who needed extra help with reading and that’s where he was for first year and at least part of second year. Handwriting was and still is torturous. When he learned cursive, he would labor for a long time and was trying to write perfectly. The result was acceptable, but in no way matched the effort and time he had put into it.

With kids like that, it is easy to think that they’re being lazy, or doing a poor job on their chores (or not doing them) on purpose, so they don’t have to keep doing them. But no. Anybody who knows Didier can say that’s not it. He is very helpful, with everybody. He likes to feel useful, he likes to work. In fact, he tends to be a perfectionist and that adds hours to the time he spends doing his homework.

ADHD, like autism, has many facets that are perplexing. Didier has issues concentrating in general, but if it is a topic he’s interested in, he has an amazing capacity for focusing on it, so that the rest of the world disappears. He’s very smart, but can make very obvious mistakes, if he doesn’t pay attention. He wants, really wants, to turn in very good assignments but the process of doing his homework can break down in any of the hundreds of steps it requires. It can be not knowing there’s homework because he’s daydreaming, or forget the instructions at school, or doing it perfectly, take it to school and forget it inside his backpack.

We had spoken to several of his teachers about how long it took him to do anything, that he forgot assignments very easily, or that he would not pay attention, and they would say the typical things: it’s normal at this age, oh, he just doesn’t want to do this… anyway, tons of excuses. And, at the end of the day, his grades were fine.

Finally, in fourth grade his teacher, who was a bit more strict than others he had had, noticed his performance decreased. Not a whole lot, but enough to be noticeable.  I told her that we suspected there was something atypical in his development and asked her what would be faster, between asking the school for an evaluation, or the pediatrician. She recommended asking the pediatrician for an evaluation. His teacher, Didier, my husband and I all answered questionnaires and then, during an in-person visit, the pediatrician asked him several things. That day he got his ADHD diagnosis (I honestly don’t think he’s that hyperactive, but OK).

Once we had the diagnosis, we requested a full evaluation from the school. He underwent several screenings and evaluations. One was the Intelligence Quotient (IQ), a family history (I met with the social worker), an academic evaluation, a speech pathology and occupational therapy—I requested that because of how hard it was for him to write by hand. Before they performed all the evaluations, the principal cautioned me: the diagnosis alone grants him certain accommodations. However, if the evaluation shows he doesn’t need them, then he won’t receive them. I told her I didn’t care, we wanted to have a full picture and know the areas in which he needed help.

His academic evaluation showed a good academic performance, but in the IQ there was an important difference between his short-term memory and processing speed, which were on the mean, and the other parameters, which were pretty far above the mean. The speech pathology evaluation showed that his language use was very good, but he had issues in planning, organizing and finishing tasks, all processes within “Executive Function.” The school decided that it was important to help him out, so he could perform according to his potential. We were very happy with this decision and in general with the school staff.

One of the best outcomes from the evaluations were therapies with the speech therapist—executive function falls within their scope of work. His therapist helped him understand what is planning and organizing, and why they are important, and then they started working on improving them. He is no longer receiving this therapy but in his middle school he is in a class where the students receive help completing their homework.

Another very good thing is that in general, his school is using new technology and they understand that in college and in daily life, people use computers, so the students can turn in assignments typed on a computer, instead of written by hand. This helps enormously, and takes away the frustration given by how laborious it is for him to write by hand.

For tests and long assignments, he gets extra time. It would be ideal for him to submit everything, consistently, the day it is due, but this helps him moderate his perfectionism, manage times (how long do you need to research a topic, how long for writing, how long to illustrate if required), and to avoid forgetting any of the steps in the process.

This sounds easy, and it is in a way for people who have good executive function skills. But for someone whose executive function is not so good, it is hard. I see this with college students too, as I teach a course on study skills. Many of them struggle with executive function, and the vast majority of them doesn’t have any diagnosis that explains that struggle, they’re part of the “neurotypical” population.

There are many people who are very successful and believes their success is due in part to their ADHD. Fortunately for people with ADHD (or ADHDers), there are not quite as many damaging myths as is the case with autism.

What is abundant, is people who claims that “it doesn’t exist” and “those kids, what they need is a good spanking.” People like my son are proof that ADHD indeed exists and it not necessarily implies challenging behaviors. As I’ve written before, we’ve had people come up to our table in restaurants to praise us because of how well behaved both kids are… one being autistic and the other ADHDer (and of course the people around us in restaurants don’t know that). We’ve never received a complaint from a teacher regarding our children disturbing classes or misbehaving. Both autism and ADHD exist, and both have multiple expressions.

Originally published (in Spanish) May 8, 2018

Some information about Marisol…

(Note: I wrote this on my Facebook wall on May 27th, 2012, a couple of months after her diagnosis; I then published it on my blog in Spanish on March 9, 2014; now I’m translating it for this blog.)

 

I wanted to explain a bit more of what Marisol has and what is that she can or cannot do. Many people hear “autistic” and think immediately on Rainman or something similar. But it is a very broad spectrum; there are people who are affected very midly, others very severely. It is common for autistic people to have other issues, like sensory processing disorder, or OCD, etc. I’m sharing our experience partially to “sensitize” you; not only for parents to be aware, but also so that, the next time you see a child throwing a huge temper tantrum in the supermarket, instead of immediately blaming the mom or dad, you consider that it is possible that child has some syndrome/disorder that is being treated, and that is quite possible the parent is going through a lot. (I’m talking about moms that worry about their children; I sometimes see some of them speaking to their children in such an awful way, or even yelling at them, or hitting them, that I really feel like lecturing that mom).

What happened was… Marisol was pretty precocious, motor-skills wise. She started walking at 9 months and was very playful. She behaved “normally” and according to her age, as far as we knew (I confirmed this after the diagnosis, when  I re-watched a ton of our home videos and pictures). In her preschool in Mexico, when she was 12 to 21 months old, what they did notice is that she was clumsy when she moved, but that was thought to be because she didn’t crawl much. Actually, she only crawled when she absolutely had to. We would leave her in the middle of a room, she’d crawl toward the wall, and used the wall as support to stand up; then she learned to stand up without a wall, and that was it, she didn’t crawl again. Ah, the other thing her teacher told me is that she was somewhat demanding in that she would always want to be carried or hugged.

It was at that time that she started to speak and babbled a lot, but in “jargon” (baby talk) so it was not intelligible, which is normal for that age. It was very funny:  since we lived on the US-Mexico border, English speakers thought she was speaking in Spanish, and vice versa, because she spoke really fast and with a lot of self-confidence.  Something that was very unusual is that she started counting at around 18 months old, without being taught. She’s fascinated by numbers and letters – I learned later that this is somewhat typical of autistic people, as is the interest in patterns.

Then, we moved to the US and it was pretty chaotic. She went back to a preschool, now a Montessori, when she was a tad older than two years old, in October or so. We started taking her twice a week, then three, then the five days. By December, her teacher had noticed some things that were peculiar and said she believed it would be good for Marisol to be evaluated. She said it seemed like Marisol liked be hugged “too” tightly, being in very small spaces, she would be “in a loop,” for example she would wash her hands, dry them, wash them again, dry them again, and so on. Then she would jump on a little trampoline and she would not stop, it was difficult for her to change her activity. She was not interacting with her peers. And, finally, she did not speak. That part was difficult to believe, because at home she would repeat phrases that were said at school, she would sing, etc. First I understood that she spoke little or something like that, until the teacher said nope, she was not saying a single word.

She thought this could be due to sensory processing disorder, with Marisol being “hyposensitive,” meaning that her senses have difficulty sending the information to the brain, or that the brain has issues processing that information. There are some traits of Marisol that match that. She has a very high threshold for pain, likes very strong flavors (very bitter chocolate, sharp cheddar, spicy food), likes to be tightly held, looks for strong sensations, like being thrown up in the air, spin really fast, etc. And her not answering to her name or, in general, not paying attention to her surroundings, even not looking at people in the eyes, all could fit into hyposensitivity.

She was evaluated, and at the beginning they noticed all those traits and estimated her as having a pretty low verbal intelligence (at the level of a baby), non-verbal intelligence was not quite as low but low anyway, and they recommended occupational and speech therapies. In the occupational therapy they did a lot of things to call her attention, one way was to use a sticker on the therapist’s forehead, to have Marisol, little by little, look at people in the eyes. Those therapies started last summer. And she progressed really well, but slowly according to the therapists. In September she started going to the class for children with “special needs” and kept progressing. In December/January we took her to a psychologist in another city we were recommended to see, because that therapist’s tests were very comprehensive.

Marisol was diagnosed with “not specified” or “atypical” autism. The diagnosis for that type of autism is very tentative and can change a lot (be milder or more severe, so to speak). Basically, you are speaking about a “highly functioning” child but that shows a variety of delays in his or her development. It was described as a Swiss cheese, with gaps in different areas. Instead of a generalized delay, she had areas where she excelled and others that where she struggled.

Her “low functioning” areas are, first of all, communication; she is still using a lot of jargon, at a time where her peers and even kids who are one or two years younger can communicate well; many of her phrases are phrases she’s head at school, from us or TV; there are times where she repeats the whole dialogue of a Care bears movie or any other TV show she watches a lot (they watch educational shows, the type that teaches math and ABCs)

She’s not good at answering what you ask; sometimes I have to ask her the same thing several times, in different ways, until she answers. Normally, she doesn’t respond with full phrases, sometimes just with “yes” or “no” but many times she responds with just one word, as in “do you want milk?” “milk.” She knows her name, recognizes it, can spell it out and write it, but if you ask her “What is your name?” she won’t answer.

In her new school, she didn’t speak until about a month and a half ago. In the actual diagnosis she was estimated to have a high non-verbal intelligence (90th percentile, so in the highest 10% for her age), and the psychologist was surprised to see that she was in the normal range for verbal intelligence. This is very likely a reflection of her communication skills being much better, obviously her intelligence itself has not changed. She’s also progressed a lot since the diagnosis in January, and especially when compared to last year.

For example, a year ago I would show her deer in the yard, and it was obvious she was not looking at them, she was looking in a different direction; now we’ve seen her paying attention to little birds. She also seeks more communication with us; she’s even taken my chin with her hands to turn my face and have me look her in the eyes; she makes a big deal when she hits herself “ouchy, ouchy, a booboo!” even when it’s obvious it didn’t hurt so much. She wants for us to make her laugh and then she runs towards us, hugs us and says “gotcha!” This last month she has started to speak more during class, and lauder, and she did the “gotcha!” thing to a little girl. I don’t know, there are a thousand small things showing up, it’s like watching a rose bud starting to open, little by little, but perceptively. She’s still singing a lot. I think she has good manual dexterity (she holds the fork really well), she is a very good speller and sings all day. She is still throwing huge temper tantrums once in a while and she has hit us if we say “no” to something (I try not to say not, and say it in another way, but don’t always do it), but she used to hit us hard and now she does it in a very deliberate way, slowly, lightly and looking at you. And she wanders—she’s right next to you and, all of a sudden, she’s far away. She’s almost four years old, over a meter tall, weighs 18 kilos (she’s very thin) and is super strong!

In the Montessori they had several sessions of gymnastics and the teacher was surprised, told her teacher that this was the girl with the most natural talent he’d seen. A couple of months later, the gymnastics group was at a children’s museum and I took Marisol, the teacher saw her do something and asked me “is she at the Montessori school?”—he remembered her. It is great that her gymnastics skills are good, of course, but believe me, when you want to strap her in her car seat, or get her out of a store, or just take her to her room, and she doesn’t feel like it (because she is STUBBORN! though that can very well be inherited from me, he he)… anyway, it’s super difficult. We never know if getting out of school will take 3 or 30 minutes.

That’s where we’re at… with lots of hope but keeping in mind that only time will tell how much she can progress or where she’ll get stuck. I’ve read blogs from autistic people and you can tell they’re obviously brilliant, they are superb writers. One of them said that being autistic is like being a foreigner forever. You can understand what stuff is about, what a certain word means, what people look like when they’re having fun or when they’re angry… but you just don’t feel it in the same way. That same guy said, in another post, that the most difficult thing on Earth is being empathetic toward someone, and really put yourself in someone’s shoes. He also said that people normally assume that, if something is not being understood, is because the autistic person lacks empathy, when in reality it goes both ways. And that is so true. Not only with autistic people, but with everyone. You don’t know what someone else is going through at a given time, and it’s good practice to give them the benefit of the doubt, don’t you think?

Our path… when “atypical” has a name

(Note: this is the second part of how Marisol got her diagnosis)

 

After Marisol’s initial evaluation, we were given several questionnaires and she had more evaluations. Once again, the evaluators thought she was withdrawn and estimated her cognitive development as being below the mean. The results included her intelligence quotient, “IQ.” By definition, the mean is 100, and a “normal” or “average” IQ is between 85-115. It is estimated that about two thirds of the population will fall in that range. They estimated her non-verbal IQ as 93 and verbal, as 64. Her global IQ was estimated as 78. They did mention that her cognitive development should be monitored, because “her performance currently reflects her interaction and engagement style more than her cognitive potential.”

Her atypical development was a common topic. A clinical social worker told me that if a child shows a developmental delay, the delay is across the board, meaning that if the child has a 6-month delay, it is a 6-month delay in all types of skills. Marisol, however, had “splinter skills” in some areas, and profound delays in other skills, thus the “atypical” pattern of development.

Socially, she would be withdrawn and, when facing new situations, she would stick to adults, interacting very little with other kids. She rarely communicated with adults to ask for something, and tended to play by herself. This was seen by the evaluators and in the questionnaires we filled out.

Answering those questionnaires was very weird. That is where I realized how little attention I paid to some things. At this point, two and a half years after starting on this journey, I think I’ve easily spent 50 hours filling out questionnaires. I’m getting used to it… but at the beginning (and even now) I have to pay attention after reading some of the questions, to be able to answer. Say, for example: “Does your child look at you in the eyes when you call her or his name?” Hmm… I needed to turn around to see Marisol and call her: “Marisol” [no answer]… “Baby” [no answer]… “Sweetie” [nope]. OK, so nope, she doesn’t look at me. For other questions, I had to ask or confirm with my husband.

Anyway, she started attending the specialized preschool. It is run by an organization that is dedicated to people with special needs, be it Down Syndrome, intellectual disability, autism or others. They have homes for adults who cannot live on their own, and they have the preschool program. Marisol’s classroom was for children with special needs. There was one specialized in autism, but there was a waitlist. Just as she had done at the Montessori preschool, Marisol was not speaking inside the classroom at all. They discovered that it was a matter of spaces and thresholds. I would take her in the mornings, and my husband picked her up in the afternoons. He noticed that if she was in the hallway, before or after classes, she would speak, but as soon as she crossed the threshold into the classroom, zip, she would be completely silent. Finally, after about six months of classes, my husband and the teacher started talking to her outside of the classroom and he went in with the toy they were playing with. She was talking, kept talking following her dad and toy, realized she was inside the classroom, but kept on talking. However…

Starting when she was supposed to say more than one word at a time, around 18 months old, and even when she was two years old, I felt she used too much baby talk, and told my parents. My dad would tell me: “record her, before you know it, she’ll be speaking and you will miss that baby talk.” Well, a year went by, and then another, and nothing. My dad would tell me again to record her and I would tell him “You told me that a year ago! … A year and a half ago! … Two years ago! And nothing!” Then, once she started talking inside her classroom, we were told or we imagined that with that extra practice, at some point she would just start talking, like her brother Didier did. But no. She spoke, but a few words, with lots of baby talk and echolalia (echolalia means repeating a phrase heard from the TV or another person, even if the phrase is repeated hours or days later).

It was during these months of her not speaking inside the classroom that we started the process of obtaining a formal diagnosis.  In the US, some therapies are given by the health department, if the child is under three years old, or by the school districts, if the child is 3-18 years old. As that is the expectation, the health insurance would not cover anything, and therapies are expensive. Having a diagnosis, especially a well-written one, is a very valuable tool to obtain services from the school or any therapies our health insurance would cover.

We were referred to a psychologist in another city, an hour away. My husband met with the psychologist once and I took Marisol to her practice for two evaluations. My husband, her teacher and I filled out more questionnaires. It was at that time that I started reading about autism. Reading the descriptions of each possible diagnosis, I thought Marisol fell within the global diagnosis, but could not be considered as “classic autism” since her “symptoms” were not so obvious (heck, we hadn’t even noticed). She could not be diagnosed as Asperger’s, because she did have the language delay. The only one left was “pervasive developmental disorder not otherwise specified,” which is given when the person does not fit nicely into any other diagnosis. One day, while we were waiting for the appointment with the psychologist, the social worker asked me what I thought would happen, and I told her I believed Marisol would be diagnosed as “not otherwise specified” and she said she thought the same way.

As I mentioned, the evaluation was in another city. It was done in two parts, because little kids tire easily and stop focusing. It was a very odd sensation to be there, seeing her take a sort of exam. It was very tempting to show her the correct answer. In fact, I had to place my hands under my tights to control myself. Marisol, on the other hand, did not seem to be paying attention. She was balancing on her legs, turning her hips slightly, without looking at whatever the psychologist was showing her. But every time, she would point at the correct answer. The evaluation was based on pattern completion—deciding what comes next in a series. Another test was on grouping similar items together; yet another was playing with a birthday party set—this was to see if she understood social aspects, if she would wear the party hat and sing happy birthday. And so on.

At some point, it was obvious she was getting cranky, and I thought she was hungry. I had some crackers in the car. I went out to get them really quickly, came back, and saw that Marisol was looking at the page numbers on the test book. After that, it was useless to try to continue with the test. She was just looking at the numbers and naming them. I explained to the psychologist that Marisol would become mesmerized with numbers and forget the world around her. The test was halted and we continued on the next visit.

Between one evaluation and another, and with the paperwork processing and so on, eight months went by between the time her teacher told me she thought there was something unusual with Marisol’s development, and obtaining her formal diagnosis. When we got the diagnosis, Marisol was three and a half years old. In comparison to what is reported around the country, we actually got her diagnosis pretty fast. There are children who, despite showing obvious signs, are not diagnosed until they’re six or eight years old. And it is very likely that during that period of time those children didn’t receive therapies that could have helped them.

The diagnosis was very comprehensive and the psychologist offered suggestions about therapies. This was very useful as we started meeting with the school district to discuss therapies and services. In the future, it will also help to request accommodations during tests, for example. The psychologist did a different IQ evaluation which is more appropriate for children with a speech delay. She calculated her IQ in 121, above the mean, which was more in agreement with what we saw on a daily basis.

There is a very important service, offered (after a very lengthy process, which I will describe at another time) by the government: “respite.” That means that someone who has experience with autism (or Down Syndrome or whatever is required) goes to your house a certain amount of time, so the parents or guardians of the person can do something: rest, go shopping, relax. I think that is an amazing idea. Something I’ve read and heard a lot about (also at work, since my employer is very proactive in promoting employee wellbeing) is the idea that the caregiver has to take care of him or herself. If you don’t take care of yourself, you cannot take care of anybody. At some point, you’ll get tired and could experience burnout.

There are many other services and supports available. For many of them, the parents’ income is taken in consideration, for others not. For instance, thanks to Marisol we have free entrance to State Parks. At school, Marisol is eligible for “extended academic year” services. This upcoming summer (2014), she will attend “summer school” in the mornings and, in the afternoon, she will go to a summer camp. In that camp, she will have an aide to help her out and keep her safe.

It has been a long road. Personally, it was not a terrible shock and I didn’t get scared with the diagnosis. What has been the most tiresome part of the whole journey has been the paperwork, by far. We’re talking, easily, of at least 150 hours to date, and we’re not done, and won’t be done anytime soon, there is no end of the road. On the flip side, I have seen how my little butterfly has been developing, you can almost see her little wings now, and at some point she’ll start flying… and that is so much worth it. All of it.

Originally published (in Spanish) on March 9, 2014.

Our path: Discovering something was not completely “typical.”

Eight years ago, we had a beautiful, cheerful and vivacious son, Didier. He started crawling when he was 7 months old, and walking at 13. He spoke a little bit “late,” to the point that his preschool teacher was somewhat worried. We had read that bilingual kids take longer to learn to speak (my native tongue is Spanish; my husband’s, English). And we were right not to worry: two months after his teacher told us she was worried, he just started talking (and has not stopped since). He is bilingual. When he was very young, so young that we didn’t even know how much he was taking in from his surroundings, a baby cried on TV, and Didier started crying too. To this day, he’s very sensitive to other people’s feelings and knows immediately if I’m sad or upset.

His sister was born when he was two and a half years old.  She was the most precious baby, cheerful and vivacious like her brother. Her name is Marisol. She didn’t feel like crawling and started walking as soon as she could. We wanted her to crawl, because we knew of its benefits for reading and writing, as well for balance. In fact, we took her to Didier’s kindergarten for an early stimulation class. We would always place her in the middle of the room to encourage her to crawl. But… she would crawl to the nearest wall and stand up. Very soon thereafter, she learned to stand up without having to use a wall for support, and that was it. She started walking when she was 9 months old.

When she turned one, she started attending that kindergarten and started recognizing and naming letters. She also knew the numbers and counted 1-20. I assumed they were teaching them at school, but her teacher said they were not doing that at all. They had letters and numbers on the walls, but they hadn’t started trying to make the kids count, much less read. Marisol has always loved numbers… Many times, the only way we could soothe her was counting aloud. Hearing me count would calm her down and she would start counting with me. I found this out after trying out many other strategies.

At that time, she seemed to be a child prodigy: she walked very early, could count to 20, could name all the letters… the one thing that was worrisome was that she would hit her forehead against her crib. At some point, she had a bruise covering all of her forehead. We had spoken to Didier’s pediatrician about this behavior, because Didier also did it (though not as hard). The pediatrician said that kids hit themselves, but not to the point of hurting themselves, since the pain makes them stop.

When Marisol was little, she spoke quite a bit, mainly using baby talk. We were living at the time in Mexico, on the US/Mexico border. She was so skillful at baby talk, that people in the US thought she was speaking in very fluid Spanish, and in Mexico they though she was speaking in English. Later on, she started to say the typical things, “mama,” “papa,” but she was still using baby talk. Though it was obvious, when comparing her to other girls her age, that her speech was not progressing quite as fast, we though that it was due to her being bilingual. Then, we moved to the US, and she changed from a school in Spanish to one in English. We kept thinking that all of this could affect her language development.

Finally, her preschool teacher told me she suspected Marisol could have sensory processing disorder. She named several behaviors she thought were peculiar: Marisol would not respond when called by her name (she would not turn toward the person calling her, and she didn’t seem to have heard); she would spend a lot of time on a single activity, or she would repeat an activity over and over again, as in a loop. One of those activities was to jump on a little trampoline, and she could jump there for hours at a time. Another behavior was that she would intensely focus on one thing, and seem to forget the world around her. She also wanted to do everything her way. And she liked to be in very narrow spaces, where you would not believe she could actually fit. She liked to feel snug (she has also always loved very tight bear hugs). Finally, she didn’t speak in class, at all. I guess I’m forgetting other things she mentioned.

The teacher lent me a book on sensory integration. Many of the items mentioned in the book made sense, and I had either seen my daughter do them, or I started to pay attention and saw her do them. The teacher recommended me to call the health department’s early intervention office, which is in charge of screening kids up to 3 years old for developmental issues.

The health department performed a developmental evaluation. The evaluation took place when Marisol was 2 years and 9 months old. They estimated her receptive communication skills (understanding what you hear) as the equivalent to a 10-month old, while her expressive communication skills (being able to express something) were similar to a 13-month old. Her cognitive capacity (attention and problem solving) was estimated to be similar to a 15-month old. Her social and emotional skills were thought to be those of a 7-month old. Finally, her physical skills (gross and fine movement) and of “life skills” were deemed age appropriate. So… they determined an atypical development pattern.

The evaluation was a shock. I could not believe she was so far away from the regular developmental milestones. I knew she was not speaking as much as other kids, but I didn’t think the difference was that great. Her problem solving skills looked fairly good to us, as it was obvious that she was taking in consideration factors that other kids her age or older were not even seeing. However, here they were, telling us she had a developmental delay of almost a year and a half.

After recovering from the shock, I started telling myself that, in reality, my daughter had not changed. The evaluators had seen her for a few minutes, didn’t know her as well as we did, and anyway, if she was going to receive therapies, those therapies would help her somehow, and would definitely not damage her. The evaluators recommended speech therapy and occupational therapy to be given for the remaining of the academic year and during the summer.

The speech therapist once told me that she believed we caused Marisol’s speech delay because we were not closing “communication cycles.” A communication cycle starts when a person speaks, and ends when the other person answers. So what this woman was saying was that Marisol would speak to us, we would not pay any attention to her whatsoever, and this caused her to “learn” not to talk to us. I freaked out. How could I have abandoned my precious daughter that I loved so much? Could it have been that with the move and getting settled in, we had too much on our plates and forgot to interact with her?

After the initial freak out moment, I started watching our home videos to detect when on Earth we had started to fail our amazing daughter so miserably. And I didn’t find ANYTHING. Nothing. I confess I am easily distracted and don’t always answer when people talk to me, but I behaved the same way with Didier and that didn’t prevent him from chattering very happily. Having access to those videos (thanks, technology!) really calmed me down. I was not the worst mother on Earth, and I had not made my daughter think it was useless to try to communicate with us.

Another thing the speech therapist said, which I did appreciate (I did not appreciate the other comment, with the hint of me being a terrible mom, though hopefully she didn’t really mean it), was that Marisol’s issue was larger than just speech. Her issue was with communication as a whole; it seemed like she didn’t understand what it was for and how it worked. During the therapy sessions, they played some games, such as passing the ball. That represents the back and forth of communication: I start, you continue, then it’s my turn, then yours. The longer I thought about it, the more it made sense. I was glad we followed her teacher’s recommendation of requesting the evaluation and accepted the subsequent therapies. I will always be grateful to Marisol’s teacher.

I had the feeling that Marisol was going on a slightly different path, that was straying more and more from ours, and that the moment to get her back to our path was now, not later, when she would be farther away. Honestly, I don’t know what would have happened if we had not done anything, but that’s a trial I would never undertake.

When the new academic year was approaching after the first summer of therapies, we were given the choice of enrolling our daughter in a specialized school. The school was integrated, meaning that her classroom would have children with and without developmental disorders. She would be given more attention, the environment would be more structured, and she would have to interact with other kids. Her preschool at the time was Montessori-based. I studied in a Montessori setting K-9 and I love it, but I also thought… that’s a system that emphasizes individuality, respect to others’ personal space and where it is actually feasible to spend the whole day without talking to someone else. So maybe that was not the best environment for a child whose biggest issue was communication. We accepted the proposal and enrolled her in the specialized school… and thus a new chapter began for my little one.

Originally written and published (in Spanish) on March 7, 2014