Currently viewing the tag: "autism"
I am putting my foot down.
As the parent of an autistic child I hear a lot about vaccines and about half a million other things that people think cause autism.
I’m hyperaware of the attention autism gets in the media. So I know about the CDC’s new stats on autism rates. I know about the debate on whether the increase in autism is due to more awareness and diagnosis or more actual occurrences. (Personally, I find the former to be a serious factor, though who’s to say how much.) And I see all the articles that come out week after week about the millions of things that are linked to autism.
There’s a recurring problem here. Valuable research is done. Research is disseminated. Information is reported. Articles are read. Findings are spread. What starts in a lab ends up in a Facebook status. What starts as truth ends up as mistruth in something like a child’s game of telephone. Along the way, piece by piece, truth fades away in favor of headlines and pageviews and gossip.
It’s getting just plain stupid. I’m starting to suspect these articles have nothing to do with serious research but with a search for traffic and hype, an attempt to ride the wave of a trendy topic as concerned parents read every horror story they can find.
A particularly egregious one came up recently. This one doesn’t just cite some random correlation. This one is just plain making things up. The problems here just pile one on top of the other. So let’s consider it piece by piece, a case study in how real research becomes misinformation.
Part One: Research
It starts with scientists. It starts with research. They write up their findings and publish them in a peer-reviewed scientific journal. In this case there are several papers published over a few years about chemicals and their link to brain development. They cover a wide variety of issues and present a wide variety of conclusions. All of them suggest further study.
Maybe they have bad methodology or use statistics incorrectly. Only a few people would ever know the difference. That’s not my concern today. Bad science is one thing, but bad information on good science is another. So let’s assume we have good, solid science in this research.
Part Two: The Conference
Scientists and researchers with similar interests get together and discuss their findings. It’s not that difference from any other conference. There are panels and presentations.
Part Three: The Op-Ed
Next, a group that works on environmental hazards for children publishes a paper. Not a research study but an op-ed in a peer-reviewed journal. In this op-ed they review the conference from Part Two and encourage the study of environmental factors and their relationship to neurodevelopment disorders. Autism is one of many neuro-ish disorders and is mentioned by name in the piece and its title. It’s unclear to me why they zero in on autism. They have a couple vague pieces of evidence that are autism-specific, but the vast majority of what they’re looking at has never been demonstrated to have any kind of relationship to autism, not even a correlation.
Problem #1 is the unnecessary autism name-checking. Problem #2 is much worse, it’s the list of 10 chemicals they suggest for future study. The list itself isn’t a bad idea, I guess. They’re suggesting places for potential research, which certainly needs to be done. But it does reek a little bit of the kind of thing magazines do, you know what I mean, 10 Ways To Get Your Guy All Fired Up! and such. Still, it’s their prerogative.
So let’s examine their evidence for these suggestions. They cite at least one paper for each of these chemicals. I checked them all. The vast majority of them have never shown any connection to Autism (or even ADHD, another diagnosis they name-check). In fact, many of them show that with exposure to these chemicals, the outcome differentials between exposure and non-exposure is 5 IQ points.
FIVE IQ POINTS. Statistically significant? Perhaps. Practically important for a parent? No.
IQ itself is a strange and vague thing. And 5 points isn’t going to move your super-genius down to the level of a normal person. They’d still be a super-genius. And adding 5 points to someone with severe mental defects isn’t going to make them normal, either. It’s hard to imagine what difference you’d see between two people whose IQ’s are 5 points apart.
Such statistical differences may well be a sign to warrant further study. And they may be a sign that these chemicals affect neurological development. But it’s getting a bit ahead of ourselves to say they are suspected of being tied to autism. Many of these papers are in areas of research that are just beginning. Many of them involve homogeneous groups (for example, all the participants are Mexican-American migrant workers) which makes issues of genetics and heredity very difficult to account for. Many involve parents self-reporting by filling out surveys rather than having the children examined by professionals.
Let’s be fair. These are the very beginnings of research. You’ll need to do all sorts of rigorous testing and consideration to make real connections. Of course more research is needed. And it’s important that we keep that in mind as we move forward.
(Though, of course, no one else will.)
Part Four: The Press Release
The op-ed is about publicity so it’s the beginning of the problem. But it gets worse. A press release comes out with the list of ten chemicals and already the twisting starts. These are chemicals suggested for further research, but suddenly they’re a ”List of the Top Ten Toxic Chemicals Suspected to Cause Autism and Learning Disabilities.” This, unsurprisingly, is the headline you’ll see all over the internet when news organizations report on the press release. Already it’s turned from suggestions for research into a watchlist.
It gets worse. The press release has this second headline:
The editorial was published alongside four other papers — each suggesting a link between toxic chemicals and autism.
No, actually that’s not at all accurate.
Let’s start with the first paper, which examines the possibility of a connection between maternal smoking and autism. What’s their conclusion?
The primary analyses indicated a slightly inverse association with all ASDs[.]
What does that mean? Among the autistic kids vs. regular kids, there was actually LESS maternal smoking in the autism group. The paper does point out that when it comes to “subgroups,” for instance high-functioning ASD or Asperger’s, there may be a possibly positive relationship. But there are so many caveats I can’t even get to them all. Let’s just take this one:
The ASD subgroup variables were imperfect, relying on the child’s access to evaluation services and the documentation by a myriad of community providers, rather than direct clinical observation.
This means that when they’re saying some groups of ASD kids may have this relationship, they didn’t actually classify these kids. They never saw these kids. They’re relying on data collected by other people. Not even by a consistent set of people. It comes from 11 different states and who knows how many providers. Who’s to say how accurate any of it is. And who’s to say whether these kids are correctly classified at their particular place on the spectrum.
So take all that with a whole jar full of salt and you’re still looking at, overall, no connection with smoking. If anything, the data would indicate smoking has LESS autism rather than more.
After this there are 2 papers on the same chemical. One of them does not contain the word “autism” anywhere. (One of its references has it, but nowhere does it appear in the text of their paper.) The second paper is better. It focuses on the chemical’s effects in particular processes which have been linked to autism. This is very micro-scale science, there are no people involved, just cells and chemicals. It’s important research, but there’s a long stretch between cellular interactions and a person’s diagnosis. It didn’t involve any analysis with autistic individuals. This is certainly the most useful paper of the bunch by a long shot, but it still just sets the stage for further research.
The fourth paper is a review. That means it asserts no new information but summarizes the research on a particular issue, specifically pesticides and autism. Technically I suppose it does assert a link, but none of this is new information.
So I think we’ve pretty much destroyed the headline in that press release. There were not 4 articles suggesting a connection between chemicals and autism.
Is it likely that the writers who take this press release and write articles on it are going to read the papers it cites? Are they going to realize that what they’re saying isn’t actually true? They should. Of course they should. But they don’t.
This list has chemicals suspected of being tied to neurological development. And we should just leave it at that. It’s not that they shouldn’t be studied. They should. But we shouldn’t be throwing out buzzwords like ADHD and Autism when the research doesn’t show any firm data.
Part Five: News Articles
This is a process, though. First research, then op-ed, then press release and finally news articles. So what’s the headline of our news article? “Top 10 Chemicals Most Likely to Cause Autism and Learning Disabilities.” Guilty of serious fearmongering, no? A more accurate title may be: Researchers propose list of chemicals potentially tied to neurological development for further study. But I doubt anyone’s going to write that.
The article itself, to be fair, is full of caveats. The reasons for the increase in autism are “controversial.” There is a “gap in the science.” But then you get a sentence like this:
But clearly, there is more to the story than simply genetics, as the increases are far too rapid to be of purely genetic origin.
Clearly? Clearly says who? What source says it’s too rapid? The author certainly isn’t a reliable source. She is Robyn O’Brien, a writer for Prevention who posted this article. Her scientific credentials are nonexistent. She is a former financial analyst who now writes about the food industry. She has an MBA, and her undergraduate was in French and Spanish.
Full disclosure: I have a B.S. in Biochemistry, but I feel I’m unqualified to write this article. I’d much rather it be written by someone with a PhD. I’m married to a PhD, which has given me a lot more exposure to science since leaving school, but I fully acknowledge that I shouldn’t be the one doing this. I know how to read a scientific article and examine its conclusions, but I certainly am not someone who can tell you if their methods and analysis are correct.
But I’m talking because there aren’t enough people talking about it. Because the PhD’s aren’t generally science writers. They are scientists. They write about their research in journals, not in the newspaper. And certainly not on a blog for a healthy living magazine.
The author goes on to restate the inaccurate subheadline of the press release verbatim.
In the end she suggests things like buying organic produce, opening your windows and buying BPA-free products.
This is part 5 of our process, but it’s where many of us start. Many of us will only read this article and not the press release or the op-ed or the research papers. Most of us aren’t qualified to do so, all we have is this article. Well, we have that and what other people tell us. Which leads us to our next step.
Part Six: Readers
The article is frustrating, but I can only get so mad. She is saying what the scientists told her to say. She has even included some cautionary language. The problem is that when writing for laymen, you have to be careful.
And with AUTISM? You have to be really careful. Just for you I’m going to venture into the comments to this article to show you how people have responded.
–How about we quit injecting our kids with aluminum, formaldehyde and the rest of the toxic stew that they call vaccines — we bypass every natural defense our bodies have (skin, saliva, stomach acid) to put these things directly in the blood stream.
–Thank you Robyn for always providing sound information to continue guiding our decisions.
–What about heavy metals like Arsenic that are trapped in soils that our “organic” brown rice is growing in to be made into brown rice syrup to sweeten organic foods and baby formula? Not to mention the reports coming in regarding the radiation and contamination from Fukushimi that has reached the west coast an is spreading across this country in the produce and even the pollen…
–Unvaccinated children are some of the healthiest little people on the planet. As far as the Autism link, who really knows but why risk it.
–Thank you for this information. It confirms to me that we should keep doing what we are doing. It also helps me to enforce our no shoes policy in our home. Some people are so disrespectful and just don’t take them off and I hate to sound like a nag and ask even though they already know its what we prefer.
Thankfully there are some people in there who take the writer to task, but how is a reader to trust any one commenter over another? You have no way of knowing from a comment what someone’s experiences or qualifications are.
There’s a reason we need responsible scientific reporting. I’m all for the open dissemination of information, but I’m also aware of what happens when people read something they don’t understand.
I encountered this FB conversation the other day. Usually I overlook such things but I could not help myself. I jumped in. I tried hard to be polite and present facts. When all that was over, no one was convinced. The response?
Enough articles on vaccines and people are scared even without evidence. Enough headlines and people don’t bother reading articles. It doesn’t matter how much is retracted or debunked, the damage is done.
We need responsible science reporting. We need responsible reporting, period. I’ve seen plenty of lazy articles on Supreme Court opinions that lead me to read the opinion myself only to realize that they’ve stated the conclusions all wrong.
I don’t want to go on all day, but I do feel like it’s important for us to put our foot down and demand better.
We aren’t all scientists. But we can ask for science writers with the appropriate qualifications. We can ask for links and citations in their articles. (I spent quite some time tracking everything down for this post, and luckily I’m relatively familiar with looking up scientific articles online.) We can ask for articles that show failed connections. It doesn’t all have to be “Autism linked to X” there’s plenty of “Autism not linked to Y” that happens in these studies but you never see that, do you?
As for us laymen, we have to find our own trusted experts. Ask your pediatrician. And if your pediatrician’s not qualified (most of them are MD’s but not PhD’s) ask them if they have a trusted source. Track down specialists in Autism with PhD’s and ask them what they think of the research. Find reliable books and articles and spread them to your friends. We can’t necessarily do a lot, but we can do our part to stop the spread of misinformation and demand better.
For another article on how to approach science writing, check out this post at The Thinking Person’s Guide to Autism.
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The meeting started 45 minutes late. At the meeting before ours the parents showed up 30 minutes late and the whole meeting had to be translated, thus the delay. It seems these problems aren’t too unusual. The family scheduled after us had already missed several appointments and called to try and reschedule while our meeting was still going on. As for me, I felt guilty that I arrived on time. I’d wanted to get there early, but I’d stopped on the way to give myself a drive-thru coffee as a treat and got stuck for 10 minutes when the lady in front of me had some problem that demanded her to pass her change and receipt back and forth with the person in the window over and over.
I sat with our service coordinator from Early Intervention and our two lead ABA therapists. Eventually the ABA evaluator came, too. We were lucky to have her. Our district is rather notorious for not having ABA evals done on time and we’d only heard from her on Monday.
In the end, I hadn’t listened to all the sources that told me all the many things I should do before the meeting. In part because it’s a lot harder to know what your goals are when your child’s never been in a classroom environment before. And because I didn’t know enough about what the meeting would be like to anticipate what I’d need. And in part because I felt like I knew Graham’s strengths and weaknesses well enough. And, I guess, because that’s just how I am. In court I used only a handful of notes when I had a trial or a hearing, my approach is to know my stuff and have it in my head. I had a small notebook and a pen to take notes. That was all.
Finally the meeting started. It was in a small room and there were 12 of us (12!) all there to talk about one little boy. We brought in chairs from another room and did our best to squeeze everyone in. Once we were all set, we went around the circle and everyone took a turn talking about Graham.
Most of them had done evaluations and had reports. There was a nurse, an early childhood educator, an occupational therapist, a psychologist and a speech therapist. Our team talked for a while. A few times people asked me questions and I answered.
I’d been told this meeting was mostly for listening. After gathering all the recommendations, they would make up the IEP and send it to me. After that we could decide whether to accept or reject it, in full or in part, and potentially start a new round of independent evaluations. So this wasn’t the end all and be all, but it was still hugely important.
It is very strange to sit in this position. You realize how different you are from other parents. When someone would talk about their time with Graham and describe him as “average” or “above average” I would think, No! I doubt there are many situations where a parent wants to hear their child’s problems examined to their fullest extent. One evaluator kept interspersing her report with gleeful statements like, “We had so much fun!” I tried to push down my frustration and take pleasure in the fact that she’d enjoyed spending time with Graham and found him delightful. Because yes, he is delightful, and it’s wonderful to hear that. Even though it was followed by a recommendation of “No Services.” It wasn’t so wonderful to hear that.
After everyone spoke, the leader of the meeting said it sounded like they all agreed on a disability of Autism. That’s different than a disability of Developmental Delay because he doesn’t really qualify for that anymore. He’s made too much progress. (Damn progress!) But Autism is a good category for what makes things difficult for Graham these days.
And then a discussion began of an Integrated Classroom. That’s a setting with 15 kids, a teacher, and 1 or 2 aides that’s made up of half regular kids and half special-needs kids. It’s exactly what we wanted for Graham. It’s full-day, 5 days a week. Door to door transportation is available. (They asked if I’d rather take him myself and I answered, honestly, “I couldn’t possibly deprive Graham of the opportunity of taking the bus every day.”)
His needs aren’t severe enough for a year-round program, so he wouldn’t start until September. It leaves us with about 2 months of time where he’ll have aged out of Early Intervention services but won’t have school yet. We all talked about finding a day camp to help him get ready for the socializing and structure of a classroom.
And it appears he’ll get 10 hours a week of ABA while he’s in class to focus on socialization. More than we’d hoped, and I think it’ll be really helpful.
I went home and did a little online research and it looks like we can afford to send the Bug to day camp at the Y for those weeks before school. (It includes swimming lessons! They don’t care if he isn’t potty trained! It’s half the price of the local day camps!)
So I don’t have to worry about educating the Bug myself. We don’t have to look at moving to another school district. We don’t have to take out a loan for private preschool tuition.
I am SO happy.
And more than that, I’m really excited for Graham. I’ve always heard about parents crying when they take their kids to the bus and rolled my eyes. But now I get it. He will be going away. ALL DAY. I will wave goodbye to him in the morning. He will have so much fun. He will be so happy. But he will be gone.
Good thing I have Miss Tesser here to keep me company.
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I’m starting to get a little bit nervous about preschool.
People are asking me about preschool and what our plans are and my answer doesn’t quite seem to satisfy them. My answer, for the record, is: We’re getting an IEP with BPS and then we’ll see what happens and figure it out from there.
There is a look people get when I say we’re going with the big-city public school system. It has busing. It has a lottery system. It is massive and kinda frightening, I won’t lie.
But that doesn’t bother me. What’s freaking me out is the IEP.
Bug has been through most of his evals now and he’s doing awesome. Which is great, right? Except that it may well means he doesn’t qualify for an IEP. Which may mean he won’t get a preschool placement.
Which means we are left with private preschool. And we can’t afford it.
So we’re looking at the possibility of Graham being at home with me full-time where I’m responsible for his socialization and education. Oh, and who knows if there will be any therapy at all. Because after he turns three it all comes down to our insurance and, as you can probably guess, we can’t afford much at all.
I know I’m Graham’s parent and the idea of me spending all day with my kid shouldn’t be frightening. But remember, Graham’s had 20+ hours a week of therapy for a YEAR. I’ve been his part-time parent, if we come right down to it. And that was without any other babies around.
Why do I want my kid in special ed? Because honestly I feel like he needs a transition from the 25 hours a week of one-on-one therapy (sometimes two-on-one) with people who know him really well to a normal classroom environment. I think he may not need a personal aide or a class with only special needs kids, but I think he’d really benefit from a teacher who’s aware of his diagnosis who has experience dealing with high-functioning kids.
My hope is that a little bit of that will mean he’ll be free of the need for any services after a year or so. I don’t know if that’s going to be enough to persuade the IEP folks. Because I’ve never done one of these before and I have a feeling that if his abilities are high enough that’s going to be the only issue. One of his therapists assures me that based on his diagnosis he’s in, end of story. I hope he’s right.
Then there’s that nagging voice in my brain that says other kids need those spots more than Graham does. That he’s doing incredibly well and making so much progress. And will going without preschool kill him? Probably not.
So yes, I’m scared. If things go a certain well I’m going to have to up my parenting game in a big way and I don’t really know how to do that. I never really pictured myself as a homeschooler. Not that preschool is homeschool. What is preschool but activities and storytime and crafts and recess. At Preschool By Jess it would probably be more like storytime and running outside while Mama sits in a chair with the baby and playgroup a couple times a week. (And probably the Teach Your Baby To Read/Math flashcards that my Mom still has from when I was a baby.)
And Grammer and I would watch the other kids get on the bus each day and I would tell him that it will be his turn… eventually.
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Let’s not ignore a certain Bug with all the new baby excitement.
A certain Bug turns 3 this summer, which means he officially moves out of Early Intervention and into the black hole of SCHOOL.
We are in the boundaries of the behemoth that is Boston Public Schools. They have a lottery system here when it comes to placement. But we aren’t having anything to do with that. Instead we get to have an IEP.
Yes, Graham will be officially classified as Special Needs by the school district. Which makes me realize that I can never make short bus jokes again. (And neither are the rest of you. And we all need to take a few minutes to feel bad at the very very frequent short bus jokes we made when we were teenagers.)
Anyway.
We are hoping to get Graham into a preschool classroom with some special needs kids and some regular kids. I think he’ll rise to the challenge. But first, we have to go through a slew of evals.
Evals are nothing new for us. Sure, we haven’t had any significant evaluations since Graham’s diagnosis last year, but you don’t really forget this stuff. I know it must seem hard for most people to watch their kid get tested. I would imagine you get nervous and anxious about how they’ll perform.
I’ve never felt that. I’ve always known pretty well what Graham’s capable of and mostly I want to make sure that he performs adequately. I don’t care if he gets things wrong. I do enjoy seeing him succeed at something I didn’t expect. Graham is pretty good at tests, in that he’s able to do what he’s capable of doing when he’s asked to do it. So I just sit back and let it happen.
The Bug had his first eval on Monday, the one for cognitive development. We currently have a speech eval scheduled in a couple weeks. And there’s a childhood development eval in a couple weeks, too, where the observer is going to come with us to playgroup. He recently took a speech articulation test and came out average for his age. (Hooray!) I’m not sure what else the speech eval will entail. There’s also supposed to be an ABA eval. This is, from everything I’ve heard, the hardest one to get scheduled.
There are rules with this IEP stuff. You have to get all the evals set up and scheduled within a certain time period. (I haven’t been paying attention, what with all the having a baby stuff, but from looking just now it appears they will not be completed in time. Surprise, surprise.) Then there’s a meeting to determine what services will be provided.
I have heard a lot of stories from parents about IEPs. And they’re mostly horror stories.
Our Developmental Pediatrician winced when he heard we’d moved from our old school district into this one.
And while moving to get ourselves into a better district might be something we *could* do, there’s just no way. There is no way we’re moving AGAIN so soon. I like our neighborhood and our apartment. I hate finding a new place. Our options are limited due to Eric’s work and our tiny budget, so it’s not like we can just go anywhere. It’s just NOT happening.
Yes, I know it is Graham’s EDUCATION it is IMPORTANT and STUFF.
But it’s also PRESCHOOL. They don’t even have grades in preschool. (Right?)
And hopefully Graham will still be able to get ABA through our insurance after he ages out of Early Intervention.
And hopefully Graham will get into a good classroom that’s a good fit.
And hopefully we can navigate our way through this whole IEP thing without me having to pull out my big I’m-a-lawyer-don’t-mess-with-me guns. (Because those are some serious guns.)
Join me in being optimistic.
Or leave me a comment about how I’m deluded and that I should start harassing the school district and give me all your fancy IEP tips.
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January was a lot like December. Positive improvement. Increase in vocabulary and language skills. Good temperament. We got his articulation test back and it put him well within average for his age. He had an IFSP where we spent most of our time remarking on his improvement from his last IFSP. We visited the developmental pediatrician who gave us our diagnosis nearly a year ago and he’s very pleased with the Bug’s progress. He made it clear that he thinks the Bug will be a happy, high-functioning kid who will require less services as he gets older. Basically, our Bug is kind of a poster child for early diagnosis and intervention.
As has been the case for a while now, there’s been lots of reflecting on how the Bug has changed. Yesterday we were looking at the little book the Bug was given when he left his playgroup in the early fall. It has lots of pictures of Graham and other kids playing. But I was struck by the pictures. They’re similar to pretty much any picture of the Bug before recently. They generally look like this:
May, 2011. Vacant (though adorable) face.
November, 2010. Vacant face.
Pretty much as soon as we hit toddler-dom, we lost the baby face and went to this zoned-out look that was pretty much all we saw for a long time.
And then there is now.
February, 2011. Action shot and a big smile.
This isn’t just a kid who’s learned to say “cheese.” This is a kid who smiles regularly. It’s nice to see.
He is still doing his typical conversational style, where he notes something and repeats it, waiting for you to say it back to him. But he’s also making more complex sentences. And you can tell all the positive reinforcement from therapy is kicking in. Here is a typical conversation we have when he wakes up in the morning.
Bug: I hear the heater. Hear the heater. I hear the heater.
Me: You hear the heater?
Bug: (in sing-song teacher voice) That’s right!
The funny thing about all this progress is it’s starting to scare me. Not that I don’t want him to do well. But we just started our IEP. And I worry that the school district will say he’s doing great, needs no services and that he won’t get into a preschool.
He is doing great. He’s also getting 25+ hours a week of therapy. (We now have therapy every morning and every afternoon, except for Thursday afternoon. It’s seriously a full-time job being the Bug.) I hear horror stories about regression and I don’t know what will happen when the Bug can only get therapy through our insurance instead of as an Early Intervention kid.
I want him to continue to do well. I want him to get weaned gradually off of the help he’s getting now. But I don’t know that that’ll happen until he’s in a more structured classroom setting like 1st grade, not so much the play of preschool.
I try not to worry too much. He hasn’t had any of the evaluations yet. There’s no point in me worrying until we get there.
We are in the early stages of working on discipline. Definitely relying on incentives and they generally seem to work. The biggest obstacle is just toddler distractedness.
One thing I’ve been paying a lot of attention to in the past couple weeks is that he’s turning back into the little perfectionist he was before therapy. Everything has to be JUST SO and if it’s not he freaks out. This doesn’t really surprise me much, knowing who his parents are, but I am trying to keep it from leading to bigger outbursts.
The other day our Early Intervention worker complimented me on calmly talking him through one of these small episodes. It was nice to be complimented. But I do feel like some of my parenting attitudes have a lot to do with therapy and a lot to do with the fact that it doesn’t matter much to Graham if I raise my voice or get upset. Back in the day, it wouldn’t matter what I said to try and calm him down so I just stopped getting upset. There was no point. Now it’s serving me pretty well as I feel pretty able to handle him calmly.
Oh, and have I mentioned he likes to count? He doesn’t always start at one, but he does pretty well when he’s in the mood. That Sesame Street is kicking in pretty fast.
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A few months ago our lead therapist was transferred off the Bug’s case and replaced by a new one. Our new therapist told us he’d seen our old one recently and the first thing she asked was, “How’s he doing with food?”
Not a surprising question. But I bet she was surprised by our new therapist’s reaction, he seemed kind of puzzled. “He’s doing great!” We’ve reached some big milestones lately and I thought we’d cover how we got here.
Eating can be an issue with any toddler, so I don’t think this is isolated to autistic kids. The kid who eats anything and then nothing is an age-old tale. (My brother only ate peanut butter sandwiches or spaghetti with clam sauce for most of his childhood.)
At 12 months the Bug was a reliable eater of solids. He ate pretty much anything, including my Mexican Casserole. He got lots of veggies, especially zucchini and carrots. And he already had his abiding love for raisins. It stayed that way for a while.
Around 17 months this changed. A lot. The Bug became a grazer.
There were two major contributors. First, the Bug became very picky and wouldn’t eat many foods he would have accepted before. I don’t know why this happened, but it did. Second, we ran into some serious communication problems.
It was around this time that I started worrying about the Bug’s communication, which ultimately led to his autism diagnosis a couple months later. The Bug began to get picky and wanted specific things to eat. But he had no way of letting me know. He wasn’t yet pointing. He wasn’t talking. He would stand at the gate to the kitchen and get more and more upset as I tried to find what he wanted.
It was brutal for both of us. I compensated by putting out little bowls of almost everything. I couldn’t give him raisins all day (which is probably what he wanted) but he had no way of understanding when I told him ” no more raisins.” For several months, much of my day consisted of ever-escalating crying and screaming from the Bug as I helplessly tried to meet his requests.
Eventually we began introducing some new foods and saw a little improvement. Cereal, crackers and frozen go-gurts became staples. But mostly we continued to work around his temper.
When therapy started, there was a heavy focus on communication. Once the groundwork was set, we focused on responding positively to his requests. If he asked for food, he got it. Sometimes he would ask for something particular. Sometimes he’d go into the kitchen and point. So he was still a grazer, eating what he wanted when he felt like it. But he was eating something and he wasn’t as upset. We took it as a win.
Around the time Graham turned 2, we focused on having him eat one or two bites of one food before he could get another food he liked better. It didn’t go too badly, but we found out from the pediatrician that Graham was underweight. I had a few explanations for this. Graham had stopped drinking whole milk and mostly requested water when summer came. Plus he would sometimes forget about eating all together when he was caught up in play. So we went back to his grazing style, though we started to incorporate more foods to try and made sure he was getting plenty to eat.
One thing I did that made a lot of the communication-focus period easier was finding foods I could feed the Bug quickly once he asked for them. Fruit was great (apples, bananas) so are the fruit/veggie pouches. Granola bars. Cereal. Cottage Cheese. Applesauce. Frozen waffles. Frozen chicken. Brown rice. Anything microwaveable had to be ready in less than a minute. It made the system a lot easier when he got his request met quickly.
As time passed, this became less urgent. I started giving him pasta, which he had to wait for while it cooked. He didn’t like waiting, but waiting was one of his programs in therapy so it was a word he understood. He started to understand the concept of getting food “hot.”
Finally we found ourselves with a Bug who was back at a healthy weight and who could request any of his foods. It took several months but now he specifies what granola bar he wants by the color wrapper. (Orange for peanut butter, purple for oatmeal raisin, etc.) He knows an orange must be peeled. He will request some foods hot.
So what was the next challenge?
Now that we’d overcome communication and made food something the Bug knew he could access, it was time to add structure.
My new attempts started last week. I was a little ambitious and decided to add 2 things at once.
First, I wanted to get vegetables back into his repertoire. Every couple months I try and fail, but this time I felt like we have the vocabulary to talk it through. I also suspected he’d eat more than he let on. Another advantage of his time in daycare this fall was that I saw what he ate every day and got good reports that he’d eat his food. I suspected he avoided new foods in part because he was at home where he knew he could get what he wanted.
Second, I wanted to institute more formal meal and snack times. Therapy is often interrupted by Graham’s requests for food, so I decided he would now have Breakfast, Lunch and Dinner. And a snack in the morning and afternoon. There are already meal time pictures for his visual schedule so it was easy to get that started.
When it’s meal time I call the meal by name. Sometimes I choose items for him, sometimes we talk about what he wants. If he’s getting a treat I let him choose it. Or if it’s a granola bar or cereal he can choose which kind. At meals I serve him two or more items and a drink. The biggest challenge right now is trying to contain mealtime within 30 minutes. He is constantly up and about.
I’m hopeful that as he gets more used to it that we will move meals to the dining room (right now he does them at the table in the living room where he does therapy). The eventual goal is to have him eat dinner with us when possible. That would be a great improvement over now, when we can never eat until the Bug’s gone to bed.
As for veggies, I started simple with green beans, peas, corn and carrots. For ease and simplicity I’m using canned for now. At our first attempt, I used green beans and the Bug eyed them warily. He ate all of his chicken but couldn’t be bothered to touch the beans. I told him he could have his “treat” (I believe it was one of his granola bars) if he ate one bean.
The Bug is quite the actor and he did a good job of picking up a bean, inspecting it, putting it down, putting a bean on a fork, moving it toward his face, putting it in his mouth, and then pulling it right back out. But eventually he ate the bean. And then he ate all the rest. As I suspected, it was all about the first step.
Since then he has requested veggies at lunch in addition to having them at dinner. We’ve been successful with all 4 veggies. Our one hiccup was when I gave him peas & carrots, which he finds disturbing for reasons I can’t discern as he likes both peas and carrots. (Perhaps he will be one of those my-foods-can’t-touch kids?)
So far it’s been a great success despite a couple bumps in the road. I’ve ordered a booster seat so Graham can sit at the dining room table (once we actually set it up…. that’s another story) and I’m planning to continue to expand his palate.
What I’d love to hear from you is how you got your picky toddlers to turn back into normal food-eating kids. In particular the Bug needs more protein in his diet and I’m curious about which meats or beans I should introduce him to and how to do it. I still rely heavily on foods that take minimal preparation and plan to keep it that way for a while so I don’t mess with a good thing. Perhaps one of those microwave-egg things? He used to eat lots of scrambled eggs but hasn’t taken to them lately.
Any tips you can share about getting your toddler to eat meals or new foods?
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Jess is a procrastinator, a former working mom who is suddenly staying at home, a Dr-Dr's wife, a non-practicing lawyer, an Autism Mom, a devoted reader, a penny pincher, a coupon clipper, a new New England-er, a low-key agnostic, a nice girl, a top-notch speller, a hardcore blogger and a Twitter fiend.
The blog covers everything from coupon tips to Autism support to adorable toddler pictures to hilarious tales of my daily grind with the occasional review & giveaway thrown in for good measure.
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