A year ago, we took Callum to see a developmental pediatrician. And, because some of his symptoms were somewhat atypical, the doctor said he was hoping he might just be delayed. He felt there was a chance that it might not prove to be classical autism and asked us to return when our son turned three. We continued speech, occupational, and physical therapy and waited it out.
During this time, I read. And researched. And analyzed. And over overanalyzed. I blogged. And socially networked. And I had built up in my mind the moment when we would finally receive a diagnosis. I had envisioned a private room, numerous assessment papers, and difficult discussions of cognitive ability and prognosis. I expected to have it really hit me on some deeper level that I couldn’t anticipate and to maybe break down. I thought it would be the really big deal it has been for so many of my special needs parent friends.
So, yesterday, we drove an hour to the University of Florida, my mind drifting over different possible scenarios. I thought we would have a long wait in the lobby. But they called us back immediately. I expected a dreary wait in the examining room. But the doctor walked right in. I was ready for him to pull out all of the various assessments from the private therapists, Early Steps, etc. And I figured he would order up a full day of assessments at Shands.
Instead, he walked in, took one look at Callum stimming over a dangling cord, and said, “So, it doesn’t look like there has been a major change. I was hoping it might go the other way. But we are definitely looking at autistic disorder.” He asked a bunch of questions about his behaviors and speech. And he spent a little time interacting with Callum – asking him to draw, give him a high five, and to return his pen (of which he did all three). He then told us to continue all of his therapies and handed us a brochure for a University of Florida training program for parents – Child Directed Interaction. He suggested we contact the Gainesville CARD. And he handed us a lab order for chromosomal testing. And that was it.
Realizing he was intending to leave, I asked the question, “So is this paper a formal diagnosis?” The doctor looked at me and said, “Well, he was diagnosed a year ago, but I was hoping he would go in the other direction.”
So, not only was our diagnosis uneventful – it, apparently, happened a year ago and no one told me. No, really.
I suppose some might accuse me of not being terribly observant, but I submit that if someone had told me my son was formally diagnosed with autism a year ago – that I would have noticed. My best guess is that it happened following our visit and after the doctor or whomever graded the parent questionnaire he had me fill out before leaving last year. I realize it wouldn’t have made any difference in our day-to-day lives. I’ve known since early on it was autism. He has received therapies since the age of 19 months. He has received the benefits of Early Steps and qualified for ESE Pre-K placement. With the exception of possibly (but not terribly likely) receiving social security disability benefits and a tax break, nothing would be any different for him having that official label.
So, instead of experiencing a fresh wave of grief and anxiety or a surge of relief and renewed purpose, I was left feeling strangely blank and mildly disconcerted. Like when you follow two characters throughout an entire romantic drama – only to be left with questions of whether or not they will really end up together. It was anti-climactic, to be sure.
Except for the part where we left the doctor’s office to head over to Shands for chromosomal testing. And after handing over our insurance information, we were denied. The wonderful woman in the outpatient lab trying to get it authorized went above and beyond the call of duty. She explained that this type of testing cannot be conducted in the lab they demanded we go to. They demanded his primary care pediatrician see him instead. She (and we) patiently explained the need for a specialist. They then demanded that the specialist call in the authorization. The specialist demanded the pediatrician call it in. The pediatrician’s office swore to call it in. And then went to lunch. We went to lunch. We returned. The pediatrician’s office then said it would be three days. Then therapy called in the middle of all that and shared that Healthease had denied his therapies for the third week in a row and they would resubmit.
So, I discovered Children’s Medical Services across the hall. Children’s Medical Services is a group of insurance programs for kids with special needs. They were pressed for time, so the nice lady gave me a card with a phone number to call. I started to get a little teary. So, the nice lady insisted someone who could help me come out front anyway. And that lady turned out to be super kind and helped me to begin paperwork to switch him out of the awful state health insurance program he is in and into theirs. And then she suggested that I go down the hall and meet with a social worker to find out about anything else I might need to know about. And that guy was also awesome and directed us to some other resources.
(And all of these people making up the staff of the University of Florida at Shands Outpatient Lab, Children’s Medical Services branch, and Social Services branch restored my admittedly shaky faith in humanity. So a big “Thank you” to them. You folks rock. And a loud “Shame on you!” to Healthease of Florida. Like Aunt Em, I can’t say what I think of you.)
So on my personal D-Day, I am reminded of the truth about autism diagnosis. The label allows you to approach, but you still have to storm the beaches yourself. You still have snipers raining fire upon you. You will see and hurt for the casualties of those just like you, also navigating their way through their battles. And, if you finally reach safety, you will look back at the devastation these battles have left behind and wonder. Yet you will know that your child – and every child – are worth any sacrifice.
For in the immortal words of Winston Churchill, ” We shall fight…We shall never surrender.”
But first we need some snuggle time and to crawl in bed. A good book. A glass of wine. And some peanut butter fudge. Then, after a good night’s sleep, we shall commence fighting in the morning. We’ve had a long day.
So, what was D-Day like for you?
Or you might enjoy this post about diagnosis from Tales from Tangerine: “A Diagnosis…Sort Of”.
Let me first preface what I want to say by telling you that I truly appreciate what you do.
Many years ago, my best friend realized that she had missed her calling and decided to go to medical school. I remember her journey from the application to med school letter I helped her edit, through her move to Miami to attend med school, the frantic hours of studying and coffee overdoses, through her years as an overworked, sleepless resident, to the very non-glamorous and non-fortune amassing reality of opening her own practice. I remember conversations over the phone in which she enlightened me just how much there is for a physician to know and how little time there is in which to learn it. People tend to see physicians as living high on the hog – when, in reality, you are business owners also struggling to maintain a profitable practice while jumping through government and insurance hoops in order to provide the best care for patients you are still just as dedicated to as you were when you began as a young, idealistic medical student. All while having to maintain a straight face while calmly explaining to your patient that, no, the diagnosis is likely a hangnail and not that exotic tropical cuticle parasite he read about on an online health board. I haven’t lived it, but I understand that the very act of being a physician is, in many ways, a sacrifice that is often unappreciated.
So, I do not view you as the enemy. In fact, pediatricians are my favorite kind of doctors. Why? Because you guys answer the phone on weekends and weeknights. You actually have an answering service. You folks will see a sick patient faster than any other kind of doctor. And many of you will open up on Saturday mornings. For when your patients get sick, they tend to get sick fast. And you know that when your patients are sick, their parents are agonized with worry – thus creating two patients really. You must endure tantrums, being bitten, ear-piercing shrieks, hysterical mamas, patients who cannot speak for themselves, heartbreaking tears, and witness abuse and neglect on a frequent basis. As a teacher, I do a little of that myself, so I have a particular fondness for you guys.
Now that I’ve expressed how wonderful you really are, let me tell you a little bit about me.
I am the mother of a soon-to-be three-year-old on the autism spectrum. I say “on the spectrum” because we do not yet have our official diagnosis. (That process begins next month at our return visit to a developmental pediatrician.) I know that one is not supposed to claim a diagnosis before it is given, but autism runs in my family. And, when you’ve seen it, you know it. Even if that weren’t the case, I’m a teacher. In fourteen years, I’ve seen a little bit of everything. So, I began our journey with autism already somewhat familiar with it and its signs.
My son has been delayed in every developmental area, some more than others. He rolled over a few weeks late. He sat late- yet not overly so. But everything he did was just a little later than expected. He never crawled properly (a knee walker). He didn’t point. He didn’t progress much past “Mama” and “Daddy”, and he didn’t begin walking until 16 1/2 months. We were also a little bit worried about his hearing, but he had tubes and frequent ear infections, so a possible hearing loss wouldn’t have been a surprise. Knowing that none of these things in isolation were definitive indicators, I mentioned them to our pediatrician in early visits but I didn’t panic. He was, after all, affectionate, interactive, and full of joyful expression. So we kept our cool. At least until he began flapping. The kind of flapping that anyone who knows autism recognizes. I knew. And I knew enough to get moving.
I took him in for a developmental assessment the day he turned 18 months old. That was my cutoff point when I gave myself permission to panic. 18 months until “wait and see” would no longer be an option for me. Our normal physician was on vacation, so we took him to see another doctor in that practice.
And the minute the doctor opened the door to the examining room, my son turned, looked him in the eye, and gave him one of those devastatingly cute smiles of happy toddlers. We had been sitting in a very clean, tidy, sterile room with nothing to be distracted by but a small bucket of toys. So, when the doctor walked in, my son was at the toy box – delightedly scattering them all about.
I know exactly what this doctor was thinking. He, a wonderful and dedicated pediatrician, surely had seen many cases of severe autism in his years of practice. And he was looking at a little boy smiling and hugging his mother, showing an interest (albeit very brief) in someone entering the room, making eye contact (again – very briefly), and sitting in front of a toy box. I know this doctor had the skills to recognize severe cases – head banging, no interaction whatsoever, aversion to touch, etc. And, seeing an absence of those behaviors, he reassured me that he wasn’t worried. He did suggest that, if I was still worried, I contact Early Steps for an evaluation . And he did listen to me while I discussed specific behaviors. But he didn’t see what was already evident to the trained eye. Here is what he missed:
1. Though my son did show an interest, it was brief, very brief. 18 month olds should maintain more consistent eye contact when spoken to and hold it for longer than my son. They should show an interest when offered things and a desire to interact. And not just on their own terms. On their own terms is a phrase known all too well by parents of autistic kids.
2. My child, though not excessively delayed in any one thing, did show a consistent tendency to be behind in every developmental area to some degree. This is very common among kids with autism spectrum disorders.
3. He wasn’t pointing. And I don’t mean just not pointing with an index finger. He wasn’t indicating what he wanted in any way or drawing my attention to things he wanted me to see – ever. This is a Big Red Flag. The misconception is that it is but one symptom of autism in a list of many. Nope. This one alone is enough to warrant further investigation of a developmental delay.
4. My son was sitting with the toys. But he wasn’t playing with them. He was repeatedly throwing them. But not playing. Children with autism spectrum disorders often do not know how to play with toys appropriately. The fact that he was interacting with literally the only items in the room did not mean he was playing appropriately. There is a big difference between playing with a toy truck and repeatedly banging it on the floor.
5. We voiced suspicious of a hearing problem. No. This, in itself, is not an indicator. The indicator is that it was combined with so many other symptoms. Almost every parent I know with and ASD child was worried about a hearing problem first. Almost always, their child’s hearing was perfect.
Had he been looking at symptoms presenting more severely, I believe he would have pulled out an M-CHAT. I do. He is a good doctor and one I would return to. Truly. He just wasn’t as cognizant of milder symptoms of autism. I didn’t know about the M-CHAT, so I walked away happy – desperately wanting to ignore the nagging voice inside my head and so relieved that a doctor wasn’t worried.
Fortunately for my son, that nagging voice wouldn’t shut up. I had seen enough autism and read enough about it that my mind would not rest easy. Being a school librarian, research is instinctive to me. So, I jumped online. That’s when I found First Signs. And that’s when I discovered the M-CHAT. I printed it out and answered the questions. And he flunked it. (By flunked, I mean that he scored just one number above passing without a need for further investigation.)
And here’s the thing. He only just flunked it. Only enough for it to say, “This may warrant further evaluation. Take this to your doctor”, etc. So, I called back and got in to see our regular doctor. We talked. She, too, is a wonderful doctor. She also told me she wasn’t too worried. But, after seeing our M-CHAT results, she went and got another M-CHAT and proceeded to interview us to complete it. Again, he just flunked.
I love our doctor. She listens and she doesn’t presume to know everything. And she had already ordered up a physical therapy consult. But it is because of that barely flunked M-CHAT that she referred him to a developmental pediatrician and ordered up additional speech and occupational therapy consults. She, too, saw my son’s strengths and wasn’t anywhere near as convinced as me that there was an autism spectrum issue looming. At that point, no one was but me. Not even my husband. I remember psychoanalyzing myself and wondering if I was developing hypochondria by proxy. Even when we had the Early Steps screening, the therapists evaluating him compared him to more severe cases and told us they didn’t think it warranted going to a developmental specialist.
But it did. And now everyone sees what I was so worried about then. This is one of those times when “I told you so” isn’t quite so gratifying.
So, finally I get to what I need to say. I know that you cannot be experts in everything. I understand that medical specializations exist for a reason. But the problem is that, too often, our kids won’t be seen by specialists soon enough — because the need for a referral wasn’t recognized. To further complicate matters, your patient won’t be pestering you to get one either. His parents will likely be so relieved to hear there is nothing to worry about that they might not press harder, even though their instincts might be screaming at them that something is wrong.
And this is a very bad thing. Because the younger a child is, the greater the likelihood of therapy making a significant difference in their future abilities. There was a time in which conventional wisdom dictated that we wait until the age of three or even later to seek a diagnosis. There was a fear that the child might be misdiagnosed – “labeled”.
Let me state emphatically that the worst thing that can happen is not a label. The worst thing that can happen is that a child does not receive needed intervention for months, likely years after they demonstrate a need for it. Children can be unlabeled. What they cannot do is turn back the clock.
Autism spectrum disorders are a complicated thing. There is no magic combination of symptoms that guarantee a diagnosis. Some ASD kids walk on their toes. Mine didn’t. Some flap. Others don’t. But there are clear red flags. And those red flags need to be recognized sooner – and not in just the severe cases.
I know that you are busy treating patients. I know that you have lives of your own. And I’m sure that stack of physician journals you want to keep up with grows larger every day while you are working longer and harder hours. But advances in autism research are being revealed almost every week it seems. My concern is that I don’t believe this research regarding early diagnosis and earlier methods of detection is being absorbed by our pediatricians soon enough to make a difference for the kids who need it.
I have a combination of over 4,000 subscribers to my blog, Facebook, and Twitter accounts. And I hear from dozens of parents each week, often sharing stories of a delay in needed diagnosis and early intervention. This tells me not that our pediatricians don’t care. Of course you care. It tells me that detection of autism and other developmental delays is not where it needs to be in this country and in others. It tells me there isn’t enough continuing education in autism for pediatricians. It tells me that, even though 1 in 110 children are now being diagnosed with autism, that we aren’t being nearly aggressive enough in working to identify these kids early enough to begin therapies that will allow their little growing minds every opportunity to forge new pathways to future learning – NOW. Later is not okay. It is needed NOW.
So I’m making a plea with pediatricians all over this country to make a conscious effort to reevaluate and expand their knowledge of autism spectrum disorders and their symptoms – even in the likely mild cases. In quiet examining rooms with few distractions, our children’s symptoms may be subtle. I’m asking you to pay particular attention to new research in developmental disorders. I’m calling on The American Acadmy of Pediatrics to work even harder to bring autism to the forefront of pediatric medicine discussion. ( This official statement is not enough.) Most parents are familiar with or know a child with conditions such as diabetes, vision problems, and ADHD. But not every parent knows the symptoms of autism or knows a child who has it. Relying too much on parental awareness is not a good strategy as there are simply too many people who view autism in terms of the movie “Rainman”. Because people are usually more familiar with severe symptoms, too many mild to moderate cases are being missed until well after these children begin school – years after therapy should have begun.
I am not suggesting that physicians deliberately ignore the DSM and diagnose autism before it is indicated. I know that some patients simply do not neatly fit the defined disorders. But the autistic label isn’t what is important. The screening and early intervention is. A “wait and see” approach to autism screening and intervention is not acceptable. Yes, some children do take a bit longer to walk, talk, etc. And, if a child is simply a bit behind with no other indicators of autism, the screening will reflect that. But too many parents in my shoes have listened to bad “wait and see” advice when their children were clearly showing multiple symptoms of autism. Advice that has haunted them and made them wonder what might have been different if only their precious children received help earlier.
While my child was fortunate enough to have been born into a family that – through experience – recognized subtle symptoms of autism, not every child is. My son began therapies at 19 months old. Most don’t get that. Too many children in this country are not diagnosed until well after the start of preschool and kindergarten, particularly in minority communities. This isn’t because their parents are neglecting them. It’s because there isn’t enough awareness. And that means that pediatricians around this country are going to have to step up to the plate and do better with this.
Because, in too many cases, you are likely to be the only person in that child’s life who will both recognize the symptoms of autism and be able to steer their parents to the therapy those children need. Just you. You may be the thing standing between that child and early therapy. For that reason, our kids are going to need pediatricians to become leaders in autism awareness and education rather than mere facilitators to access other physicians.
You are on the front lines of autism. And your patients and their parents need you to charge fearlessly ahead. For each time a developmentally at-risk child receives early intervention, there is hope for a brighter future filled with greater opportunity.
“He is the best physician who is the most ingenious inspirer of hope.”
-Samuel Taylor Coleridge
Wondering if your child or a child you love might be autistic? Here’s what to do.
Last year, when I made the realization that my then-20 month old son was showing clear signs of being on the autism spectrum, I shared my concerns with a few people. Those people had one of only two reactions. The first was denial. I was told that my son was too young, too cute, too social, and the oft-repeated “But he’s a boy. They develop later than girls.” I understand this reaction. Parents often worry for nothing — especially about early development. Boys are different from girls in their development. And, yes, my son’s spectrum behaviors are somewhat atypical. (As for being too cute? Well, I don’t deny for a moment that he is The Cutest Little Boy in the World, so there is that.)
It was the other reaction that left me somewhat disconcerted and admittedly…torn. I was immediately told by several people to keep quiet about it. I’m not suggesting that they didn’t want us to seek help for him. They did. But they also insisted that we should protect him from any stigmatization by keeping it a secret. Not wanting to make any irreversible mistakes, initially we followed that advice. Only close friends and family were told, along with my administrators, who would inevitably notice all of the days I had to be out for assessments, appointments, hearing tests, etc.
But as the months passed, I found this advice difficult to follow. We live in a small city. One tends to bump into acquaintances in one of only two therapy centers in the county. Family friends know that ASD in the family. Inevitably, one member of the family is incapable of keeping a shut mouth. To state the obvious, it gets out. In our case, because Callum has some indicators that he may one day be high-functioning, I found myself wanting to clarify his situation as being hopeful rather than bleak. So, while I initially intended to protect his privacy, life happened, and now folks know.
Yet it wasn’t mere inevitability that decided the secrecy issue for me. What decided it were my experiences as a teacher. After years of working with ASD kids in middle school – in a range of severity and ability – I have reached the conclusion that not only should ASD not be shrouded in secrecy , it should be shouted from the proverbial rooftop.
In my sixteen years working and teaching in multiple schools across the school system, I have met a lot of ASD kids. While they have all been verbal (nonverbal spectrum kids in this county usually attend a special-needs school), their functioning has varied from non-reader to academically gifted and from requiring a full-time aide to being completely self-sufficient. I have also worked with kids who were clearly – to persons with any sort of knowledge of autism spectrum disorders – clearly autistic/Asperger’s, but were never diagnosed due to their families’ desire for secrecy and a refusal to have them evaluated for needed services that might “put a label” on them.
In addition to ranging in severity, function, and awareness of their condition, they have also varied in the positivity of their middle school years. In my experience, the ASD kids on the more severe end of the spectrum fare a little better in terms of teasing and bullying. Their behaviors are so obvious that the typical kids seem to “sense” their differentness. The bullies among them don’t bother as much to target those kids as they don’t give as satisfactory of a response to teasing. This is not to imply that severe ASD kids don’t suffer from bullying. They do. But most middle-school bullies prefer a victim who will provide a little more “entertainment” and interaction.
The ASD kids on the higher-functioning end of the spectrum, in my opinion, don’t fare as well. Their differences and needs are perceived as weird or deliberate, and they suffer all the negative attention that follows. Because their diagnosis is known, however, school staff try to be on the lookout for such things and often make accommodations to help them navigate around the bullies. We try to pair them up with more sensitive students and have plans for them on special events days.
But the ASD kids who are never diagnosed or whose condition is not revealed? They have it worst of all. These kids, whose families- and sometimes even doctors and teachers- want them to be viewed as “normal”, have received little to no help whatsoever. They have endured years of criticism about their poor handwriting, clumsiness, social awkwardness, etc. They have been left alone in the world, trying to navigate a mine-field of subtle human behavior, facial expressions, and unwritten rules of social norms. These kids could have received speech, occupational, physical, and cognitive therapy. They could have been taught how to interpret otherwise inexplicable-to-them behaviors of the world around them. But they get nothing. Their middle school years are pure hell. They don’t even know themselves why they are different. Imagine being that intelligent and not knowing why your life is so hard.
A desire for secrecy – as well as the well-intentioned desire to “not stigmatize” them – denies these kids years of help and the understanding of others. To me, that’s unforgivable. Because in the ASD world, that level of high-functioning is a gift horse you just don’t look in the mouth.
Just imagine how years of speech, occupational, and cognitive therapy could have benefitted them. Would they still be autistic? Of course! But they could have been autistic with friendships and accomplishments and far fewer memories of bullying and humiliation. I pray each day that my son learns to speak in sentences and that his joint attention improves to the point of being able to learn academically. I pray each day for him to have the opportunities the high-functioning kids have. I also pray that, no matter what his level of functioning, that I will find the right words and actions to help him fit into his world.
Yet all I have seen with regard to autism disclosure is…nothing. Either the autistic child’s functioning is so low that the other kids just sort of naturally leave them alone or their functioning is so high – but so unusual as to be weird – that the other kids tease and bully them. I have yet to see a moderate to high-functioning child who understands his own condition enough to help others understand or a parent or counselor (with parental permission, of course) come into the classroom and visit with the other students to explain it for him.
The thing is, I really do believe that could make a difference. It is amazing how typical kids can and do often rise to the occasion when something is explained well to them. Will bullying still exist? Of course. You can’t be different and not experience it at all. But when you point out the obvious, you, to some degree, disarm those who would have done it for you. You educate others and prepare an easier path for yourself. At the very least, you put the world on notice of how you expect to be fairly treated and can then reasonably expect to hold them accountable. Until then, you can’t say they really know better.
I am certain that there are those and will be those who believe that I should keep Callum’s challenges quiet. And I know they mean well. But I’m coming at this with the hope that his abilities will be such that he will need me to help clear that path for him in the regular classroom. I’m hoping his functioning will be at such a high level that he will seem merely odd, rather than incapable, and need the understanding of his condition by those who might not otherwise have perceived it.
I might not get what I want. He might never progress beyond a few words and gestural communication. If that’s the case, we will love him and help him to be the best and happiest Callum he can be. If that’s the case, then our revelation of his ASD status will be moot. Everyone will know anyway.
But if it isn’t the case, then I’ll still be the eye in the sky reporter, watching for trouble, pointing out roadblocks, and suggesting other routes. I will visit his class and help his classmates to understand. I will insist that not only his teachers be present for initial parent conferences but also any para-professionals, administrators, office personnel, or cafeteria managers who might need to know who he is and why he does what he does. I will continue to do those things until he can do them for himself –so that I will never see the look of grief in his eyes that I have seen in so many ASD kids’ eyes. I might not be able to change the world. But, by avoiding secrecy and ignorance, I can help to improve his.
And at the very least? I intend to put them on notice.