A letter to my pediatrician after his explosive diagnosis:
Part 2: Getting the diagnosis
Dear Dr “I”;
Edit: If this tl;dr then know this: you effed up Dr. I, and I am not happy.
Dr I, Hopefully you read part 1, and so now you know that you walked into the room to face a very tired, over stimulated, cranky toddler (who was doing quite well for this) and his increasingly stressed, nervous mother. Strangely when you came in, you also looked quite distracted and worried, and not your usual ‘I have all the time in the world, your child is everything to me’ chilled self, although I appreciate that latter is a façade put on for the benefit of your patients.
With a distracted look, you turned your screen to me and started the usual litany of statistics: “Growth charts… Sam started here, and as you can see, he is still way off the chart. We’re looking at 6ft 4” still”.
I hate this part.
This is the part of the well-child check where you announce my child will be 6 ft 4 (AT LEAST!) when he grows up and wait for some reaction from me. Firstly: I don’t believe you, but time will tell. Secondly: what reaction do you want? Height is achieved, plainly through no skill of mine, my husband’s or my child’s. It’s not difficult as a middle class Ameri-Brit family to provide adequate nutrition to allow my kiddo to fulfil his genetic potential and so I really don’t feel I can take credit for this. Nor am I actually particularly over-joyed: I try not to focus on global beauty standards with my child because I would rather the world, as a whole, did not set general standards of beauty and hold people up to them: I’d much rather we more openly acknowledged that beauty is in the eye of the beholder and celebrated tall, short, fat, thin, middle, blonde, brunette, curly, straight… whatever. Sometimes, in response to my slightly panicked look you say “He’ll be a basketball player!” and while I appreciate that Sam is too young to be affected by these things now, I also am not into pushing him in any one life direction. So, while it is not particularly harmful, it doesn’t come easily to me to say ‘Yes! Because of his genetically determined height at 24 months old, I have decided exactly what will make him happy in his 20s”. Anyway… I am an over thinker and these are the things I think in the deafly awkward silence following exclamations about my son’s projected height.
One day I’ll get it right. One day I’ll say something brilliant like “6ft 4? Fabulous, his life span will be shorter than if he were not tall”. Or maybe “That tall? Excellent, if medicine advances very quickly, and he is able to gestate his own children, he’ll be more likely to have twins“. And we’ll move on from this awkward conversation.
But today, you barely paused at his 99th percentile + height. Or his weight (29.5 lbs), or how excellent his weight-for-height percentile is (70th). You looked haunted. You said “and that’s done”. And I said “No vaccines?” and you said “not this visit”, and when I saw ‘flu vaccine on your screen, you gave a long pause and said “maybe the ‘flu… if you want it…”.
And this is where we started to mentally part ways.
“Ummm… do I want it?” I aksed. Despite being militantly pro-vaccination, I was now alarmed by your hesitancy. “What do you recommend?”. You looked uncomfortable…
“It’s up to you”. Up to me? Aren’t doctors supposed to be full of the joys of vaccination? My damn OB would barely let me get out the door without a ‘flu fax (OB! What is obstetrical about that?!?). One of my performance criteria at work is having the ‘flu vaccination BEFORE Nov 1st (I work in a clinical environment – doctors everywhere). And here you were, hesitating…
Your hesitation threw me and I said “Ummm… I guess we won’t get it?”
“Good” you said and brusquely moved on.
I WOULD LIKE TO POINT OUT THAT YOU, MR ANTI-FLU VACCINATIONS, WHO TREATS HUNDREDS OF CHILDREN A WEEK, ARE CURENTLY OFF WORK WITH THE ‘FLU. Think about that.
Back to my topic. You turned to Sam. “Can I have a hug?”. Sam paused. He looked at you. He thought about it. “Hug Dr I…” I gamely said (although I also don’t especially support making children be affectionate to people they don’t want to [bodily autonomy and all that] or to strangers [far scarier reasons]). Sam, dutifully, blessedly, went in for a hug and as he did he saw a jar of sticks about your head. He looked at me and pointed, but you deposited him on the ground and shook your head.
You asked Sam how he was. You asked him what he had been up to. Actually, so that I could take a ‘phone call about how my MRI showed that my brain is inflamed (don’t even go there Dr. I) and my sinuses all screwed up, he had been watching an episode of Thomas Train. So, he told you about it “Thomas got stuck on the bridge!” he said (although it sounds more like ‘Tos stuck on the widge” – that’s what you might remember). You didn’t reply. I imagine this was perplexing to Sam, who repeated it. You didn’t reply. He said it again, and then Sam supplied the answer you are supposed to give “Oh dear!” he said ‘What happened?”. Your response?
“Sam, can I look in your eyes?”.
How is this even appropriate?? Acknowledge the damn Thomas story. Lawd knows I do it at least 100 times a day.
You seemed to want to put him on the bed, and I gestured that that was fine, but something was up, I don’t know what, and you took hm off the bed and plunked him on my lap. You shone your little light thing at him and looked in one ear, then said ‘Sam, look at me’ and when he didn’t, moved the light to his other ear.
And then you were done. And you were packing up and mumbling something about his language not being very good for his age. And secretly? I was almost a little pleased because I have been saying for over a year that Sam is not very good at langauage – he learns it, eventually, but way slower than other kids. He got his first word quite early, but then he never had the ‘explosion’ other kids go through. He knows his alphabet, the knows his numbers, he can communicate what he wants, but his language is not great. I have been pointing this out, for over 12 months, and everyone has been shushing me. And honestly, in that moment, all I could think was ‘HA! Now I can tell Wes that I was right and we need to work a little more at Sam’s speech’.
You left the room.
I started the laborious task of packing up 26 alphabet cards that Sam really wanted to call out both the letter and a word starting with that letter for each one. Sigh. Half way through this, you came back in the room.
“I don’t think I was clear with you”
“Your child’s language is not as it should be”
“Yes, I know, I have been saying this for a while… I am wondering what we can do to help it come along” I said.
“No, you are not listening to me… your son has a problem…”
and while I remember nearly all of the visit up to this point with crystal clarity, everything became a blur from here. Here are the snatches of conversation I do remember. You saying “His speech is repetitive, and it is out of place” and ‘We call it echolalia”.
You said “I can’t get him to look me in the eye” and I remember saying that I was pretty sure he looked me in the eye and you – you who sees my son for 5 minutes every 6 months – had the audacity to shake your head.
And then you broke my heart a little bit when you said:
“The things you think are cute – are a problem”.
I remember you repeatedly saying to me, in this stupid grave voice “I need to be clear here”. I remember you getting frustrated that I wasn’t doing – I don’t know what – throwing my hands up in the air and weeping? Because honestly I was thinking “OK, so Sam has some language delay, Sam has some social problems, that’s fine, we’re all different – I love my son! If he needs help, we’ll get it, and if this is just him, this is him, and we’ll love him! We are so blessed to have him”. This is what I was thinking as you started saying, in a voice I would personally reserve for a potentially fatal illness:
“I want to refer him to the autism clinic” and I was trying to get some calm here, and some perspective. And I told you that I was fully aware that Sam had some language delays and that this converstaion was not a huge shock to me, because I am a trained Developmental Psychologist, and I knew langauage delay was a sign of ASD and so I had looked out for this for months, and I really didn’t see it (ME! HIS MOTHER – yes, mothers can be wrong, but please give my feelings / intutition / experience some credibility, or some acknowledgment). And you said “No, he is on the spectrum. He is clearly high-functioning, but on the spectrum”. And I immediately thought ‘well… we are all on the spectrum – that’s why it is a damn spectrum, but OK, I don’t really believe you, but if this the case then fine, we love our kiddo and I see no reason to think that he won’t always be as great as he is now…”
And when I conveyed this to you, it clearly bothered you (or maybe you were grumpy because you had the ‘start of the flu) because you started to talk about ‘regressions’ and ‘not using language at all’ and his words ‘disappearing’ and then I got scared. I love my son as he is now – I am not prepared for him to change. I do remember clearly trying to back you up. I remember saying “hang on, he has a father who is a self-confessed loner and a mother with intense, almost pathological social anxiety – I am a behavior geneticist, he has not had a great start!”. And that is when you took all my suggestions, all my reasons, all my attempts to calm everything the F down and you looked me straight in the eye and you said:
“Let me be clear. Your son is atypical”.
And I was shocked. And upset. And confused. And disbelieving. And you said “I am not using the big A word yet, but he IS on the spectrum, and he will regress”.
Funnily enough, at this point Sam decided to run up and hug your leg and you looked at me and said “He is a really sweet boy though” and I was thinking ‘Though? THOUGH? He is a really sweet boy, end of’. I said “OK, so what can we do?” and we mentally really parted ways when you said:
“Look for the regression and call me”.
And then you left. I went to the car. And I texted my friend Sheryl to see if I could go and see her, and I cried. And cried. And cried.
Let’s be clear – my son is pretty behind in his language development. We are getting him a formal assessment – and would be delighted to particiate in any prescribed intervention. Or just delighted to let Sam be Sam and focus more on his other strengths. BUT, given that he is 24 months old, that he has a more limited environment than most other toddlers, that you remarked on his broad vocabulary, and that he is very slowly starting to put words together [‘car is white’ or ‘ladybug on nose’], I suspect it is too early to know if this is truly a developmental delay, or if he is just the tail end of normal. However, even if my son was showing early signs of ASD (he was not) or not, this is what I really want to tell you.
Here are the ways you momumentally messed up (and let’s not even go into being hesitant to give my son a vaccine that could save his life):
(1) You never, once, asked if I was the primary caregiver, or how much time I spent with my child;
(2) You mistook a screener for a diagnostic tool;
(3) You didn’t administer the screener properly, in that you never checked I understood the questions (I didn’t);
(4) You made the classic error of forming an opinion before seeing the child, and going for confirmation, rather than taking an open view, and being as objective as possible; You would do well to read and understand Rosenhan’s classic 1973 article “On Being Sane in Insane Places” (or tl;dr? Here is the wiki link which explains the problem of assessing someone you have already labelled);
(5) You made no attempt to get to know the child and get him comfortable in his environment before performing an assessment of his normal behavior;
(6) You didn’t listen to his mother / father – the main informants with diagnoses at this age;
(7) You mistook ‘at increased risk’ for ‘definitely on the spectrum’;
(8) You were utterly reactive [‘just wait for the regression and call me’] and not proactive [hey – how about some language intervention? Social stimulation? Let’s see what we can do)]
(9) Most egregious of all (I think, it’s a toss-up with 8) you treated ASD like it was the worst thing in the world – I couldn’t understand why I was so upset in the car, I kept saying ‘pull youself together Lekki, it’s not like he has pediatric cancer ffs’ but it was your tone, your gravity, your attitude that it was all downhill from here. Your lack of reassurance, your “he is a sweet boy though”. I am not naive – as a class teacher in a special needs school I have worked with the full spectrum of ASD. Children with ASD are still children, they still have a lot of offer, they can still be a joy. When you said “what you think is cute, is a problem” is NOT the case. What I think is cute in Sam, is cute. He is a darn cute kid. It may also signal a developmental difference – but he is still cute.
Why am I making such a big deal of this? Soon, I will get around to writing part 3: the aftermath. But it has been a really a hard week. It is really hard to have someone tell you there is something wrong with your child. It is really hard to have someone imply blame, and to tell you that there is nothing that can be done. It is harder still to be told that things will change – that you will lose the child you love so much to a ‘regression’. My friend Craig put it best: “There are some things you can’t unhear”. Whatever I think of your (mis)diagnosis you have cast a shadow over the next year. We are constantly questioning ourselves, questioning Sam, wondering what will happen. I am questioning my whole parenting philosophy (probably best summed up as ‘unparenting with lots of cuddles’). Wes is questioning his ability to look after his son. We are both genuinely quite shocked that anyone thinks of Sam as anything less than wonderful. Different – sure. But different isn’t bad. I feel so protective over my son.
This could all have been so different. You could have said “Hey, there are some things I would like to keep an eye on. Let’s get someone out to check Sam is hitting all the targets we expect. He could be a little more sociable, and better at language at this stage, and I just want to make sure we are giving him the chance to fulfil his potential”. Or whatever. We can discuss what should have been done in part 3, when kind people actually did things properly.
Ugh. I am still so up and down about all this.