Not Bad, Just Different
Months ago, my toddler’s doctor suggested an Autism evaluation.
It was expected. At 18 months old, he was diagnosed with Sensory Processing Disorder on top of his existing developmental delays, and has had therapy from an early age to help them clear these and other hurdles.
In the weeks leading up to the evaluation, I limited my reading to sites like the CDC which were reliable sources of information in a sea of iffy sources. But I read them through a lens colored by years of seeing ASD stereotypes in movies, television and online. The anti-vaxxer memes listing Autism alongside “death” and “SIDS” as if they were the same thing were easy to dismiss. But the rest were more insidious.
He’s all the things ASD stereotypes are not: sociable, talkative, friendly, curious, empathetic. As a result of this and my newfound “knowledge,” I walked in half-expecting to be told he was growing out of his sensory issues and we needed to be patient.
Turns out I had no frigging clue.
My son did beautifully at the evaluation. A doctor played with him in a cheerful toy-filled room. She asked him to complete challenges that were easy for him. But some were confusing, and twice he settled his head in his hands and cried. At the end he curled up in my lap and slept as the doctor gave her diagnosis.
She explained how children who met a certain number of criteria from two categories are diagnosed with Autism, and then she went through a long list of criteria and explained that my son met every single criteria for Autism Spectrum Disorder.
Every. Single. One.
It made no sense. I suspected he would meet a few of the conditions on her list, but every single one?
As she talked, I realized that I’d built a mountain of internalized stereotype about ASD that overshadowed reliable information and needed to disappear if I ever wanted to support and understand my kid. Moreover, that despite “researching” online, I had no idea what was going on. I was worse than ignorant – I was ignorant while thinking I knew a little something. It was blindsiding, and in retrospect, exactly what needed to happen.
“This room,” the doctor observed, “is full of toys designed to catch kids’ attention. . . your son played with a wrench. It’s not even a toy. He only brought you a toy to look at when he wanted help fixing it.”
I felt a stab of guilt because I had been proud of how he fixed the toy, and always encouraged his love of tinkering with real things. For over an hour one summer day, we experimented with PVC pipe and our garden hose. He helped drill holes in lengths of pipe using different sized drill bits, and we watched the water pressure change. He was enthralled.
“I thought his interest in building real objects was a good thing,” I protested, “But it turns out it’s a bad thing?”
The doctor said “abnormal isn’t the same as bad; it just means something that is outside the mainstream. Whatever spin people put on it out there is on them” she said gesturing out the window. “Most two year olds won’t spend an hour on anything, especially not making sprinklers out of pipes. That doesn’t make it a bad thing. Just different.”
Not bad. Just different.
Some of his differences make it hard for him to function. But, the problems he has coping with chaos, texture, noise and uncertainty come not from a “bad” thing” in his head, but from a disconnect between his needs and the way our world works.
This perspective makes all the difference. It helps that he’s remarkably self-aware, and often pulls himself away or takes a break when activities are overstimulating. We’re learning to pay attention, be respectful of that need, and put in place tools to help him survive life when it disconnects from what he can handle.
That said, I have not come to terms with this diagnosis yet. Though, reading work by people with autism, and connecting with the local parent advisory council is helping.
Acknowledging that I will never see the world the way he sees it, or experience sound and texture the way he does is a first step. At two years old, he is already in uncharted territory, and I can only support and love him from the outside, and try to understand enough to encourage the strengths that come with his unique brain while not penalizing him for the disconnects.
The strengths are incredible. So much comes easy for him: letters, numbers, building, music, and problem solving. These have become the places where we can connect with him on his terms, build on his strengths, sneak in some occupational therapy practice, and help him gain confidence.
Still, I am nervous about what’s ahead for us, though it’s clear that nearly all media portrayals, and common assumptions are unhelpful. The diagnosis opens doors to tools and treatments we could not otherwise afford, but it also puts him squarely in the line of fire for prejudice and hatred.
With SPD, there were glares during meltdowns, assumptions that we were crappy parents, that SPD doesn’t exist, or he was a brat. But, that was doable. The word “Autism” brings out so much worse in people.
There are the assertions from many anti-vax fronts that somehow Autism is worse than death. There are entire online communities built around hate speech targeted at people with Autism. There are articles and memes saying people with Autism are violent criminals (they are not, though there’s some interesting reading on this). The hate ranges from casual to vitriolic, and at some point he will realize it exists and have to face it without our help.
None of us are ready for that moment. But, I take heart that when it occurs, he will be older and more independent, and that maybe in the intervening years public perception will have improved regarding mental illness in general.
But beyond that I am lost when imagining his long-term future. Today is easy though: costume building, preschool, OT, trains. Tomorrow will wait.
featured image from Wikimedia.
Thanks for writing about your experience! You can tell a person’s character by how they deal with adversity. And your son sounds like a very strong, interesting little boy.
I like how your doctor took your concerns and turned them around to show you the other side–as you said, not bad, just different.
I don’t know if I liked fixing things as a kid, but I do find assembling IKEA furniture to be very therapeutic. I also used to build a lot of things with modeling clay. I’m pretty impressed your son was able to use a drill!
Thanks! Part of why we moved here last year was because of this clinic. It’s just a normal military treatment facility, but it has a great developmental pediatric clinic and the doctors who do these evaluations are very down-to-earth and good at addressing parents concerns without going over the top.
The drilling is pretty fun. I pick up tools marketed and designed for women because they are small enough for toddler hands, have easier triggers to push, and are less powerful. . .all of which says something about how stupid marketing them for adults (without grip or strength challenges) is.
I might be dealing with the other side:
I’m autistic, my partner is autistic. My son might not be autistic. I mean, he’s *fairly* slow with the motor skills stuff. But not as much as I was. He’s still within normative ranges at the moment. Most people would be happy. I’m conflicted. Mostly he seems to be a very very smart but more or less neurotypical toddler. Now what do I do? 😀 (Not entirely joking).
On the topic of growing up autistic: the more subtle stuff is much harder to deal with than the people who’d rather I not exist (unless they’re you’re own family or something). The people who never ever believed when I *couldn’t* do something, who told me I was lazy and irresponsible so much I believed it. As well as the people who patronise you, seem benevolent but really just think you’re incompetent. They will hold you back if they get a chance. Sometimes people are both: they think you’re incompetent and can’t do anything but it’s because you’re lazy and mooch off of other people, but don’t worry, they’re gracious and will give you charity. And then you’d better well be very grateful and never have too much fun in life. And they’ll never actually do what’s needed to help, so you can *do* stuff, just a little differently or with more or different supports than others. It’s also important not to have to feel shame about the stuff you just can’t do.
I sympathize with coming at this from the other side, and I agree that it’s probably the same in some ways because it means not quite understanding how a child’s brain is experiencing something.
This: “Sometimes people are both: they think you’re incompetent and can’t do anything but it’s because you’re lazy and mooch off of other people, but don’t worry, they’re gracious and will give you charity.” just makes me angry.
In some ways, I feel like doing “easy” stuff is twice as hard as it is for other kids. Like, he and his brother run around on a soccer field with a bunch of other toddlers once a week. Every week, the session starts with a hand stamp, then the coaches call the kids to the center of the field. Last week, there were no hand stamps and they went to mid field. I was so frustrated because the hand stamp was no big deal to the staff, but it threw my son off completely.
We ended up using all our tools for calming, finding a safe quiet space, then leaving and coming in again at which point I found a stamp for his hand. Then he was able to line up with everyone else. Getting to that line was supposed to be the easiest part of the session, but he had to work much harder to get there than anyone else. Some people could write off someone with those challenges was incompetent.
However, once on the field, he knew and remembered the instructions for each goofy game much better than his peers, and was able to “read” the words on the signs around the field. Someone even asked what program we were using to have a two year old so good at letters and words. But that memory is all him. Those skills are much harder than what anyone expects of a kid his age. . .and it was so easy for him to clear them.
Your comment makes me think how people who dismiss him as lazy or incompetent will miss those ways that he’s exceptional. I’ll have to watch out for that as he starts school, etc.
When you’re very good at some things, better than most others, it’s even harder for people to believe that you can be so much worse at other things – they think you must be intentionally doing it wrong or not bothering.
I’m not sure if you’ve read about this already, but it seems to work similarly for a large group of autistic people and it’s something I think I would have been happier to have figured out earlier in life (not to mention my parents, though they handled everything fairly well instinctively), so in case it’s useful information (and I do hate unsolicited advice myself so I hope you don’t mind too much): If I have a plan for the way things are going to go, and they don’t go according to plan, a ‘meltdown’ is likely to happen and I’ll need to find some way to calm down, like you described. If I resign myself to not having a plan for certain activities etc, then I won’t need to deal with that, but I’ll be a lot fuzzier and more easily spaced out. While I prefer to have a plan and then have it work, because that’s the way I can function best and be more aware and alert for everything, sometimes it’s better not to have those expectations and not have to deal with the huge stress and anger when things go differently at the last minute.
This, exactly. I don’t like situations where things are likely to go randomly, and try to play ways through them. But if the plan doesn’t work, I struggle. And try to avoid those situations. For some reason I also have a dislike of ringing businesses, although that’s at least as much because I struggle with *their* scripts. Listen to my question, answer it, don’t say “have you tried turning it off and on again” when I want to buy a new phone.
I read an article the other day about women with autism, and one of their examples was of a ~2 year old girl who was detected (partly) because she used exactly the same script for two “social interaction” tests. Yes, and I still do that 40+ years later.
Which reminds me: as a parent, check their expectations. Because it occasionally happens that the kid’s expectations stray far from what is going to happen, not just in terms of basic procedures but also specific content.
WE had a situation during the last holiday when we went to Park Güell in Barcelona. My daughter was really looking forward to it, but we hadn’t noticed that she imagined a place very different from the actual location. The disappointment and subsequent meltdown were so bad her dad had to carry a kicking and screaming kid off the premises. After we left we had a wonderful afternoon in the city.
So, making use of “virtual guides” before going somewhere isn’t going to spoil their fun, but actually improving life for all.
This is for Gilel, but I can’t seem to reply to your reply:
This is a great ideas. Rehearsing everything coming up in the day was a surprisingly hard adjustment for me to make because I love surprises. But, my kids absolutely 100% don’t. Making them a book or pamphlet to read before the event is a great idea.
My kid get this a lot with their (now minor) physical disabilities. They can feed themselves and drink from an open cup without spilling most of the time. . . so naturally the reason they still use bottles when they drink for hydration or nutrition is because we are lazy and they are conning us. It’s got nothing to do with a disability that makes it difficult to drink from a sippy cup or glass for any length of time.
I wanted to add:
You said this:
To me, unsolicited advice is the person in the grocery store who mumbles loudly that “someone needs to spank that kid,” or parent in my sped group who thinks anything other than ABA therapy 30+ hours a week is medical neglect, or the neighbor of nt kids who keeps trying to get me to put my son on a diet free of dyes, preservatives, etc (um, he already has enough trouble eating, I’m not going to arbitrarily restrict his diet).
Your comments are absolutely and definitely solicited advice. I basically wrote a column saying “I’m new to this. help!” And you helped by weighing in. Thanks.
Welcome to the club!
My oldest is mildly autistic, at the “brink” of the diagnosis (and man did I get frustrated by those questionaires. First they asked me about stuff that happened years ago and then all those “yes/no” questions that didn’t allow me to get a word in edgewise and actually get them to understand how exactly my kid was different. I swear that I was almost throwing a temper tantrum).
To me, getting the diagnosis was just putting a word to the many ways in which my kid is different and I understand that she is apparently pretty atypical for non neurotypical people as well. She is, for example, perfectly able to cope with changes in routine. Sure, meltdowns can happen when some much anticipated activity gets cancelled or postponed, but that’s pretty standard for all kids.
And prepare to get judged a lot. In our case we found some things that work with meltdowns which typically occur when things she herself is doing don’t work out the way she planned them. With neurotypical kids you offer them help in fixing, mending, repairing things. You show sympathy and comfort them. You give them alternatives. In her case it will make the meltdown even worse. What helps is being a “bad parent”: remove the offending object from sight or remove kid. Don’t even try to fix anything. Tell her she can come back when she calmed down. A quick “I’m sorry this didn’t work out” is ok but any further attempts at comforting will make all hell break loose.
IN short, you look like you have a shrivelled plum instead of a heart to everybody around you. Some time later (anything between 5 and 15 minutes) she will return. And if you’Re very unlucky somebody will mention The Incident because somebody needs to comfort the kid because the horrible mother didn’t do so and then it all starts again. Yes, I’ve told people in no uncertain ways to shut up and that yes it’S entirely their fault the kid is crying again.
TLDR: Find out where his triggers are, find out what works for him, don’t give a fuck and yes, there’s a whole lot of awesome in this as well. My kid will drive me to despair and make me break down and cry so no, it’S not easy, but I also know that I couldn’t have her awesomeness without the other parts.
sigh. . .yes. I call it “riding out the storm.” I hate how we’re judged as being too mean when we do that, but being too lenient for not beating the crap out of him at other points in the meltdown.
(more later. . .I only have a few seconds left to type)
Do you have a family history of autism? I’m curious about that since I recently came across this:
> New Study: Autism Linked to Environment: Scientific
> Research links soaring incidence of the mysterious
> neurological disorder to fetal and infant exposure to
> pesticides, viruses, household chemicals
> Alex Reynolds
> Alex Reynolds
> Autism and Air Pollution: The Link Grows Stronger |
> Studies continue to suggest that in utero exposure to
> pollution can raise the risk of autism
> Alex Reynolds
> Children with autism are two to three times more likely than
> other children to have been exposed to car exhaust, smog,
> and other air pollutants during their earliest days,
> according to a new study.
> That new research adds to a mounting body of evidence that
> shows a link between early-life exposure to pollution and
> autism spectrum disorders.
> Alex Reynolds
> It’s also increasingly clear that genetics can’t tell the
> whole story of autism. A Stanford University study of twins
> published last year found that genetics accounts for just 38
> percent of the risk.
> “That analysis suggested that the assumption that this is
> mostly a genetic condition was perhaps made in error,” said
> Diana Schendel, a scientist with the CDC’s National Center
> on Birth Defects and Developmental Disabilities. “Maybe the
> environment plays a larger role in autism than we once
> Alex Reynolds
> Drugs used decades ago to treat morning sickness, bipolar
> disorder and ulcers, as well as the insecticide
> chlorpyrifos, have already been tied to autism. With about
> 80,000 chemicals available for industry use, most of which
> remain untested for toxicities, researchers have plenty more
> potential culprits to investigate. A study spearheaded by
> the advocacy organization Environmental Working Group found
> an average of 200 industrial chemicals in the umbilical cord
> blood of 10 babies born in U.S. hospitals in 2004.
> Such figures have raised alarms given the host of health
> problems on the rise among kids, including diabetes,
> obesity, asthma and cancer. Growing children are extremely
> sensitive to chemicals, even at very low doses. And of all
> the developing organs, the brain may be the most vulnerable.
> The time window for a chemical to wreak havoc extends from
> the early embryo all the way through adolescence, when the
> brain finally matures.
> “The brain goes through rapid changes, all complex and all
> easily disrupted,” said Dr. Philip Landrigan, chairman of
> the department of preventative medicine at the Mount Sinai
> School of Medicine in New York City. “Take a Swiss watch and
> multiply that by 1,000.”
> In April, Landrigan co-authored a report that highlighted 10
> widely used chemicals and mixtures of chemicals that are
> suspected of harming the developing brain, including lead,
> methylmercury, organochlorine pesticides, endocrine
> disruptors such as bisphenol-A and phthalates, automobile
> exhaust, and flame retardants.
> Recent research by Irva Hertz-Picciotto, an autism expert at
> the University of California, Davis, supports the list. She
> has found hints of links between autism and proximity to
> freeways, pesticides and a parent’s occupational exposures,
> as well as nutrition.
> The latter study was the first to illustrate how genes and
> the environment might interact to trigger the disease.
> “Children who inherited unlucky genes that made them less
> efficient at utilizing and metabolizing the folic acid of
> prenatal vitamins had a five- to seven-fold higher risk of
> autism,” Hertz-Picciotto said.
> Next up for her team: agricultural chemicals and possibly
> Other research published over the past few months has added
> evidence that flame retardants and polychlorinated biphenyls
> (PCBs), as well as some factors more broadly considered
> environmental such as a mother’s diabetes or fevers during
> pregnancy, might be implicated in autism and other learning
> disorders. Several more ongoing studies are looking into
> social factors, medications taken during pregnancy, and
> Alex Reynolds
> California’s sevenfold increase in autism cannot be
> explained by changes in doctors’ diagnoses and most likely
> is due to environmental exposures, University of California
> scientists reported Thursday.
> The scientists who authored the new study advocate a
> nationwide shift in autism research to focus on potential
> factors in the environment that babies and fetuses are
> exposed to, including pesticides, viruses and chemicals in
> household products.
> “It’s time to start looking for the environmental culprits
> responsible for the remarkable increase in the rate of
> autism in California,” said Irva Hertz-Picciotto, an
> epidemiology professor at University of California, Davis
> who led the study.
> Throughout the nation, the numbers of autistic children have
> increased dramatically over the past 15 years. Autistic
> children have problems communicating and interacting
> socially; the symptoms usually are evident by the time the
> child is a toddler.
> More than 3,000 new cases of autism were reported in
> California in 2006, compared with 205 in 1990. In 1990, 6.2
> of every 10,000 children born in the state were diagnosed
> with autism by the age of five, compared with 42.5 in 10,000
> born in 2001, according to the study, published in the
> journal Epidemiology. The numbers have continued to rise
> since then.
> Alex Reynolds
> A 2011 Stanford University study with 192 pairs of twins,
> with one twin autistic and one not, found that genetics
> accounts for 38 percent of the risk of autism, and
> environmental factors account for 62 percent. Supporting an
> environmental/genetic tag team are other studies showing
> autistic children and their mothers have a high rate of a
> genetic deficiency in the production of glutathione, an
> antioxidant and the body’s primary means of detoxifying
> heavy metals. High levels of toxic metals in children are
> strongly correlated with the severity of autism.
> Low levels of glutathione, coupled with high production of
> another chemical, homocysteine, increase the chance of a
> mother having an autistic child to one in three. That autism
> is four times more common among boys than girls is likely
> related to a defect in the single male X chromosome
> contributing to antioxidant deficiency. But there is no such
> thing as a genetic disease epidemic because genes don’t
> change that quickly, so the alarming rise in autism must be
> the result of increased environmental exposures that exploit
> these genetic defects.
> The list of autism’s possible environmental triggers is long
> and comes from many studies that show higher rates of autism
> with greater exposure to flame retardants, plasticizers like
> BPA, pesticides, endocrine disruptors in personal-care
> products, heavy metals in air pollution, mercury, and
> pharmaceuticals like antidepressants.
> During the first three months of gestation, a human embryo
> adds 250,000 brain cells per minute, reaching 200 billion by
> the fifth month. No chemical elixir can improve this
> biologic miracle, but thousands of toxic substances can
> cross the placenta and impair the process, leaving brain
> cells stressed, inflamed, less well developed, fewer in
> number and with fewer connections with each other. Autistic
> brain architecture can be revealed by MRI scan as early as
> six months of age.
> Doctors have long advised women during pregnancy to avoid
> consumption of alcohol, drugs or chemicals. But as
> participants in modern society we are all now exposed to
> over 85,000 chemicals from the food we eat, the water we
> drink, the air we breathe and the consumer products we use.
> Pregnant women and their children have 100 times more
> chemical exposures today than 50 years ago. The average
> newborn has more than 200 different chemicals and heavy
> metals contaminating its blood when it takes its first
> breath; 158 of them are toxic to the brain. Little wonder
> that rates of autism, attention deficit and behavioral
> disorders are all on the rise.
Babies exposed to air pollution in the womb are more likely to have autism than those whose mothers spend pregnancy in clean air, according to a new study.
In the largest study of its kind, UCLA researchers compared levels of air pollutants, mostly related to vehicle traffic, during pregnancy gestation periods of 7,603 children with autism and 75,635 children without autism, born from 1995 to 2006 in Los Angeles. The study was published March 1 in Environmental Health Perspectives, a peer-reviewed journal published by the National Institute of Environmental Health Sciences.
Babies at the 75th percentile of exposure to toxins had 8 percent to 10 percent higher risk of autism than babies at the bottom 25th percentile, the study said. Ozone and fine particulates had the strongest association with autism.
“These findings are of concern, since traffic-related air pollution is ubiquitous,” said Dr. Beate Ritz, chair of UCLA’s Department of Epidemiology and the study’s senior author. She said she was reluctant to advise expectant mothers to leave LA or polluted cities, because that’s not an option for many. “We can’t tell them to not breathe or not go outside or not go to work,” she said. She did recommend avoiding sitting in traffic, when pollutant exposure is worst.
Using government air monitoring stations, researchers estimated average exposures during pregnancy to carbon monoxide, nitrogen dioxide, nitric oxide, ozone and particulate matter. The study adjusted for factors that include maternal age, birthplace, race and education. Using birth certificates, researchers compared control children with non-control children who had matching birth year, sex and gestational age at birth.
This is important because the highest rates of autism tend to be among children of older, more educated and white parents. Also, there is a higher likelihood of autism in a mother’s first child, probably because parents of autistic children often do not continue to have more children, Ritz said.
We have no family history of autism on the side of the family for which we have a complete medical history, but the causes of my son’s autism are very cut and dry: he was an early term preemie with an very low birth weight (VLBW, in this case just under 1.5 lbs). Both of these conditions are tied with an increased likelihood of an ASD diagnosis. Specifically, one study showed that 26% of early term low birth weight babies had positive results on an Autsim checklist (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2703587/). It was a small study, but the findings are significant. Another study of adults who were early term with very low birth weight showed increased likilihood for autism over their term birth peers (http://pediatrics.aappublications.org/content/134/6/1075).
Personally, I think the increase in autism diagnosis is due to a complex array of factors, but we tend to prefer simple answers to problems like this. Examples of issues that contribute: increased/improved diagnosis (example: we were offered to have an evaluation as parents as soon as our son got his diagnosis, something that is standard practice at our clinic now but was not 10 years ago), an increased survival rate of babies who are more likely to have autism (the gestational age of viability has dropped a lot, and treatments in NICUs that prevent greater neurological disability that may hide ASD tendencies are increasing), and more.
Everything I read has said that autism starts before birth, but I look forward to reading the links you provided along with the excerpts so I can have a fuller discussion about this.
Thanks! From what I read in the Stanford study and from the scientist quoted from the CDC, they seem to think an added component is exposure by pregnant women to certain toxins.
You might also like to read this from Sci Am- although it’s about cancer I still think it’s useful.
If any of the prior links I provided were broken I apologize and will try to post them in full here.
My family history is high-functioning autism on both sides back as far as I can tell. Social events with my mother’s family are difficult, but at least better than my father’s family (who are less functioning and compounded by deafness in one case). Flip side is that being with people who all have unusually good working memory makes some stuff simpler than you might expect. And we never argue about who pays how much at restaurants (except with servers) because we can all do basic maths and prefer to pay exactly our own share.
Given the right situation anyone who can function slightly in social situations can display significant talent – one of my great-grandfathers was a British orphan who somehow parleyed ability with maths into a clerkship and became a banker. He was notoriously a bad personnel manager but apparently amazing with numbers. His son was a labourer in the railways because he wasn’t able to quite get through school.
I suspect that families like mine are fairly common, but before most jobs required skills that autists either have more or less of than usual, no-one noticed or cared. How would a somewhat autistic peasant differ from any other peasant? These days we live in big cities and there are lots of poorly programmed social interactions (hard for autists), but we also favour methodical thinking and other autistic skills. That will combine with increased diagnostic ability probably explains increased numbers.
I have this hope that technology helps offset the challenges of these interactions, btw.
These days we live in big cities and there are lots of poorly programmed social interactions (hard for autists), but we also favour methodical thinking and other autistic skills.
Also, you said this:
I agree, and think that better diagnosis is a huge reason for the increase in ASD numbers. For example, our clinic has a policy of offering to do parent diagnostic testing whenever a child is diagnosed as an effort to help adults who may have been overlooked get support.
Even before my son’s diagnosis, I’ve been interested in how so many people cling to the simples possible single-cause explanation for the rise in numbers, even when that cause is illogical or has been disproven (vaccines, for example). That plus referring to autism as an “epidemic” is a sort of one two punch of misunderstanding.