Going gluten and dairy free… reluctantly

I have always believed, and still do, that a diet doesn’t make a child “less autistic.”

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My little girl has been having GI issues. First the doctor explored if it could be lactose intolerance or something similar (her doctor said that at 10 years old many children develop it). So… she was taken off dairy. She has not improved all that much, so I called the doctor to see if we could get her back on dairy and a few days later have her go off gluten—the other suspect. I spoke to them and nope… the doctor’s recommendation was to keep her off dairy, and to have her off gluten as well. If the symptoms improve, then we could add dairy and see what happens.

I’m pretty aware that this means she’ll be temporarily following the so-called “GFCF” (gluten free-casein free) diet that has been falsely promoted as a “cure” for autism.

I have always believed, and still do, that a diet doesn’t make a child “less autistic.” I do believe that it is possible that a child that cannot easily communicate or cannot fully articulate their feelings, such as something hurting or feeling ill, can have gastrointestinal issues. And that those issues could be related to an intolerance or allergy to a specific type of food. And that if you take away that type of food, the child will feel better and will not be as irritable, will eat and sleep better and so on. But that has nothing to do with autism, it is related to a gastrointestinal issue. On the other hand, I believe that needlessly following a diet that restricts a food group can cause malnutrition and lower your quality of life. Here I speak a little bit about that. And, of course, if the malaise doesn’t have anything to do with food, the behavior will not change. The gluten free-casein free diet has been proven to NOT change behavior or characteristics of autistic people (that is, obviously, unless they are actually intolerant to them).

We have been very transparent with my little one, clarifying what the doctor is saying and she has been the one to relate her symptoms to the doctor. Last night I told her I was going to call the doctor and that there was the likelihood of them saying she needed to be off gluten too. Today I had to break the bad news to her and say that she will have to abstain from both types of food for a couple of weeks. She decided she wanted to start tomorrow. She has shown an amazing level of maturity and fortitude in this whole ordeal. She knows she will be doing this because she is not feeling well, and that this is done only to make her feel better.

I can imagine a parent who believes autism is an undesirable “trait” and that it can be separated from their children, and that cannot see that a certain behavior might be a symptom that something is not going well, instead of being something intrinsic to the person… I cannot imagine that parent looking at their child and saying “well, you see, we want you to not eat gluten and dairy because we don’t want you to be… you” Or will they simply lie to their children? I feel very sad for those children, but also for their parents. I will be thinking of them these next couple of weeks…

Autism Acceptance Month: People First vs. Identity First Language

Most autistic people prefer Identity First Language. Respect their wish.

A few years ago, I participated in a course called “Partners in Policymaking” where I learned very valuable things about how laws protecting disabled people were enacted and how new policy is created. One thing I didn’t like, though, was the insistence on using “People First Language” (PFL) because it “emphasizes the person first, not their disability.” This is advocated by all government agencies, including the CDC, and by some universities that offer courses related to autism.

While more and more people are seeing the bias implied in PFL and are advocating for the use of “Identity First Language” (IFL), it seems like this is an ongoing conversation. PFL vs. IFL has been discussed in many spheres and blogs. One good article is by Emily Ladau, who happens to be a Partners in Policymaking pal. Here are my two cents.

The original idea was good. It meant to stop the use of what became derogative terms to refer to disabled people. However, it is intermingled with medical connotations. The comparisons given in general are those to diseases (don’t call them deaf, that’s like calling someone a diabetic).

In fact some organizations, like Family to Family Network, states that “A disability has been defined as a body function that operates differently. It’s that simple! It’s just a body function that works differently.” Wait, what? What about neurodivergent people? What would be the body function that works differently in someone with anxiety? Autism? ADHD? It is the person as a whole that experiences the world in a particular way and responds also in a given way. We’re not speaking about their pinky.

Another issue I have with this is that people advocating for PFL speak about IFL as if one didn’t address the person by their name. One webpage stated that PFL is “defining a person by name (Jane) or role (Aunt, Sister, Friend) and not disability helps others see potential rather than limitations.” As if one called out: “Hey, you, the autistic one, come here!” Does that sound ridiculous? It is. You commonly call or refer to someone by their name or say they’re your friend/child/parent.

Note also the bias in the quote above: “see potential rather than limitations.” They are saying that by thinking someone is autistic they think of limitations. Not of the positive traits that autism brings, including loyalty and honesty. They think “attention deficit” for ADHD, instead of creativity.

It is true that some communities DO want to use PFL. Some people DO see their particular disability as something that doesn’t change their life in a crucial way. Having a chronic pain condition, which is a disability, can be considered as something separate from the core identity of the person.

Some other diagnoses are hard to use with IFL, even if you wanted to. For example with ADD/ADHD, Cerebral Palsy… how would you use it?

But many, especially in the neurodivergent communities, DO embrace their disability as an identity. Many also consider being neurodivergent is not a disability in and of itself; it is something that becomes a disability in a society that is built for neurotypical people. They like their type of brain. And want to talk about it as just another aspect of their personality. Some even see it as an advantage and as a positive trait.

IFL also celebrates being part of a community. Many Deaf people, for example, refer to themselves as Deaf, with capital D, because it is an identity they accept. Most autistic people prefer IFL too.

The bottom line is that PFL stops being respectful when it doesn’t consider the wishes of the people it wants to show respect to.

 

What would really be respectful?

  • It is crucial to value the person and show it—do not think you’re better than they are or that you’re fortunate because you don’t “have” whatever. This is hard to do, because we’ve been socialized through ableism. I dare say that we all, including disabled people, have interiorized ableism, subconsciously believing that being “able-bodied” or “neurotypical” is a desired, optimal condition.
  • Realize that the person has a myriad qualities and can offer great insights and value to the workplace, classroom, or group.
  • Stop using terms such as “afflicted,” “suffering from,” “confined to,” “victim.”
  • Accept and use the preferred language of the person (not the caregiver, though) that you are talking to, or referring to. If they say they want to be referred to as autistic, don’t correct them. You’ll end up digging yourself into a hole explaining to them why saying “I have autism” is better than “I’m autistic.” Explanations like “You’re a person first!” and “Autism doesn’t define you” don’t make the cut. They do know they’re a person. And… maybe they DO feel autism defines them. Just like being a woman does. Or a man. Or an architect, mother, mathematician.

 

A good list of tips on communicating with and thinking about disabled people (or people with disabilities, depending on their particular wishes) includes that if you offer assistance to the person, WAIT until the person accepts your offer. And that you speak directly to the person, not to their interpreter or companion. It does mention PFL later on, but in general it offers good ideas.

I use and advocate for the use of IFL. To me it represents valuing the person as a whole, meaning WITH their disability or neuro-type. To me, PFL is the equivalent of “not seeing color.” If we all go with the flow and use PFL to avoid stereotypes, we actually perpetuate them. We collaborate to the thinking that a particular disability is a negative trait and the less spoken about, the better. We all can change the culture, but only if we dare to do so.

Autism Acceptance Month: Respect

Autistic people are listening. What are you saying?

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

Autism Spirit Week – Day 5

Sensory needs – what should you keep in mind?

More people than we realize have sensory needs different from ours. And these needs are not quite as easy to determine; many people are unaware that they have a sense of smell that is much stronger than that of most other people. Or that they are more sensitive to light, or to touch.

You don’t know who has a sensory difference. And very likely they won’t tell you. They will just think “so-and-so puts on way too much perfume.” If you want to be inclusive in your daily life, especially if your work means you have to interact with many people–if you are a cashier, for example, or a nurse, receptionist, teacher… think of how you can make people feel better. Some ideas for public spaces, or wherever you want visitors to be comfortable in, are:

  • During a conference or any meeting in a large space: Use a microphone. This is not about how loud or clear your voice is. For people who are hard of hearing or have auditory processing disorder, it is much easier to understand what you’re saying if you use it. This is crucial if you’re the speaker. If you are an audience member asking a question to the speaker, be patient and wait for the microphone to get to you before speaking. If you want to be an excellent ally, and there is no microphone… mention that in the exit survey!
  • Be mindful of perfumes and scents (including smell from drinks and food) in your work space. Both are nice, generally speaking, but many people have a sense of smell that is fairly strong. For them, your perfume or lotion could be overwhelming. It could make them unable to focus on what you’re saying, and it could make their interaction with you very uncomfortable. Other people have allergies to different perfumes and scents so their experience will be awful.
  • Allow / get used to people fidgeting. Some people can actually pay more attention if they are moving their hands. This goes for teachers, professors, speakers, parents. Some people retain more if they are doodling. I have fidget toys in my office (I am an advisor to college students). Fidget toys are good for any place like waiting rooms or offices, especially if it is a situation that could cause anxiety (dentist & the principal’s office come to mind).
  • Don’t insist on people looking at you or (worse) looking at you in the eye. Innumerable articles have been written stating that this can make the person unable to pay attention to what you’re saying, and it makes them incredibly uncomfortable. This is important for teachers, professors, advisors, doctors… believe they are listening or ask them a question, if you really doubt they’re hearing what you are saying.
  • Lights! Don’t use excessive lightning. People don’t want to be squinting all the time. If possible, use softer light sources, including daylight. In some cases it can be considered photophobia and can cause migraines.
  • Ornaments are fantastic but in excess or when they have bright colors, too many words, etc., they can be overwhelming.
  • Music is fantastic. But when mixed with other noises and/or being loud, it could be very distracting with someone whose brain pays attention to all the noises around. A best choice is to keep it low, preferably with no lyrics, when you are meeting with someone.

 

When you’re alone you can focus on just your needs and that’s great. But if you are in a public space or have an office where you expect visitors, it is good to think of people who might “feel” more than you. They could get sensory overload and become distressed because of your choices. You know your sensory needs, but not those of people who enter your store / office / classroom. When in doubt… it’s safer to go for less sensory input. After all, you want your visitors to be comfortable, right?

Autism Spirit Week – Day 4

Celebrating Autism and Neurodiversity

Today is a colorful day. Many autistic people identify with a rainbow-colored infinity symbol. Please join in by wearing colorful clothes or wearing anything (a ribbon, a hair bow, tie) with many colors…  This is a way to celebrate the multiple ways of being autistic and, more broadly, to celebrate neurodiversity. Neurodiversity includes all types of neurology, by the by. If you are talking about “neurodiverse” people you’re including everything—ADHD, dyslexia, autism, OCD, “typical,” and so on.

People with a neurologically-based diagnosis are neurodivergent. Neurotypical means the person has no such diagnosis. I’ve posted before that “neurotypical” would need to be a diagnosis by exclusion as in “you seem to have no… and we can rule out… so for the time being we can give you a presumptive diagnosis of neurotypicality.”

You’re a so-called neurotypical? Or autistic? Have ADD? ADHD? Tourette’s? Down Syndrome? All neurotypes are amazing. All can contribute to make this world a better place. What we need for that to happen is to provide the support and accommodations that each person needs, so the person can thrive. We need to really interiorize that by providing accommodations to someone you’re not giving them an advantage and you are not providing preferential treatment. You’re just believing that they want to do their best and respecting & supporting their needs. That’s all.

Autism Spirit Week – Day 3

#AskingAutistics: What is your favorite activity? Or Hobby? Why do you engage in that activity?

Today is a day to talk about hobbies, special interests, favorite activities. We all have hobbies or a favorite activity that we rely on when we have free time, or it is something we make sure we do every daily. It is something that brings us joy and comfort.

Autistic people are stereotyped as having “odd” special interests—liking to know the brands of faucets, say, or the types of clouds. And yes, those exist (as they do in the non-autistic population). But some others are more commonplace, like being interested in dinosaurs, or Barbie dolls. I interviewed my 10 year old daughter about her favorite activities, and this is what she said:

 

Current favorite activity: Playing Roblox (MeepCity, Innovation Artic Base and Would You Rather) since Halloween last year. I play most days, for an hour on Thursdays, half an hour on Wednesdays, and 15 minutes on Tuesdays (at least, that’s my plan). On weekends, sometimes longer than an hour, maybe two hours. It depends on what we’re doing that weekend.

Other favorite online games from the past: Minecraft was the first game I played, starting in second grade. Then at the beginning of fifth grade I stopped playing Minecraft and started playing different Roblox games: Tornado Alley, Survivor and SharkBite, Adopt Me, Speed Run, Fashion Famous, Epic Minigames.

Other favorite activities NOT online: knitting, dancing and writing on my journal. I knit anything I’m in the mood to knit—mostly accessories. The type of dancing I like is lyrical. I love it. I’m taking a lyrical dance class (and also taking jazz). My journal is top secret and I write basically plans for the future, or stories. I cannot explain too much—It’s top secret.

Why do I like MeepCity: You get to play with very fun toys you don’t have in real life, there’s fun furniture; you can join in parties and dance, you can also eat pizza and ice cream and even drink coffee (I don’t drink coffee in real life or in the game). I drink lemon juice. Yummy! I play with a real-life friend from school and sometimes at school we chat about MeepCity. I cannot play with my brother because we share the same computer, but I do watch him play. He plays Mad City and Innovation Artic Base, sometimes. Also Minecraft.

Stuff that I do for learning, related to my favorite activities: I am taking a CASgame class at the local university. I have taken Scratch coding at school. I like making games!

It is important for me that my parents let me play because: Otherwise I would be very bored. It is the activity I really like. I also like talking with everyone in my family every day. I do the other things I am supposed to do: I go to sleep at my bedtime, and do my chores, and do my homework and reading for school.

 

#AskingAutistics: What is your favorite activity? Or Hobby? Why do you engage in that activity?

Autism Spirit Week – Day 2 (& International Autism Day)

So today, the theme is red. Everywhere. ¿Why red? I guess the answer is… ¿Why not? It doesn’t hurt (and may be the actual reason) that red is opposite blue in the color spectrum. Red is also a very bright, alive, happy color.

This campaign was started by #ActuallyAutistic people in 2015. Join them!