Tuesday, October 30, 2007

Diagnosis: Maybe

For nearly two years now, I’ve been saying that my son might have autism. Today, a room full of experts said exactly the same thing.

“Bub is a conundrum,” the psychiatrist announced at the end of this second day of testing. “I think he probably has autism – but at this point I honestly don’t know.” Bub has many of the classic markers of autism – with pronoun-reversal being one of the most obvious – yet in other ways he is closing the gap between himself and typically developing four-year-olds. He sailed through the pretend-play portion of the test today, making a wooden block drive like a car, fly like an airplane, and pour like a cup. But he also played quietly with toys for three quarters of an hour while hubby and I were being interviewed without once bringing over a toy for us to look at or attempting to gain our attention in any way. He is, as I’ve known all along, a borderline case, someone who may or may not be best served by an official diagnosis. “Every kid who’s the least bit odd is diagnosed with autism these days,” the doctor pointed out. “They say that 1 in 166 children has autism – there’s just no way that’s right.”

The results of the tests we did earlier this month were unsurprising: Bub’s intelligence is above average (and, on some portions of the test, exceptional), but his social and life skills are lagging behind. The psychometrist noted the gap between Bub’s performance on concrete and abstract tasks; the speech pathologists mentioned the scripted quality of his speech. Everyone remarked on how gentle, sweet, and well-behaved he was. (At this juncture, Bub looked up from the book he had been perusing for the last twenty minutes and announced, with an enchanting smile, “I love these colours and shapes!”)

In the end, it was our decision to make. “Based on what I’ve seen, I’m comfortable writing down Pervasive Developmental Disorder on a piece of paper,” the psychiatrist said. That piece of paper won’t get us IBI therapy – Bub scores too high to qualify for that – but it will get us onto some waiting lists for other programs. It will also get us an IEP when we start kindergarten in the fall. Until then, we keep doing what we’re doing – Bub is improving by leaps and bounds with his current regimen of gymnastics and nursery school, and the psychiatrist claimed that for children with his intelligence and verbal skills, the right day-care/school environment can accomplish as much as a behavioural intervention program. We’ll continue with speech therapy and add some OT – and in fifteen months we’ll go back for a reassessment.

The psychiatrist made me promise that if two years from now it has become clear that Bub doesn’t have autism, I’ll let him remove the diagnosis. I think I can safely say that’s a promise I’d be happy to fulfill.

58 comments:

Jess said...

When I first read this post I thought how frustrating it must be for you to spend all this time just to have people come to a non-conclusion that you already understood, but actually I think it sounds like you are doing the best thing for Bub, and that you have really great perspective on all this. Here's hoping for a great 15 months for Bub.

Mouse said...

It can be frustrating to have this whole work up to "maybe." But there's the upside that at least you didn't get some sort of "he's so obviously on the spectrum and we've wasted all this time he could have been receiving treatment."

I really like that idea of "removing the diagnosis" in 15 months--that's sort of what we're hoping to set up for Scooter when we get him evaluated with his new school district: an IEP for the first 2-3 years and then seeing if he can sail on his own.

Omaha Mama said...

I think you are smart to go with the diagnosis, to get him the extra help. Wouldn't it be great if you are mistaken and his diagnosis is dismissed in two year. But even if it isn't, what a wonderful boy you have. Intelligent. Sweet. Bright.

Time to count blessings, yeah?

Suz said...

Diagnosis or no, it must have felt good to get the confirmation that you're doing (and have been doing) the right things for Bub.

Blog Antagonist said...

I think he sounds like a really good doctor. I've been on this merry go round for a while, starting with PPO in 2002, and what I can tell you is that often, they are too willing to slap a PDD-NOS label on a kid, and not the other way around.

I like his approach and I think he gave you good counsel. However, I will warn you that sometimes, once a kid is flagged as PDD-NOS in the public school system, it can be difficult to retract a diagnosis officially. At least here in the states. You might want to do some research and see how often it happens in your district, if ever.

That said, I think Bub is very similar to Diminutive One in many ways. We suspected Asperger's at one time, but it was ultimately decided that he did not meet enough of the criteria.

But currently, he is doing very, very well. Better than I ever could have hoped. I didn't think I would be saying that, like...ever, but he is. And Bub will too. And that's due in large part to the fact that he has a mother willing to advocate for him.

Janet said...

At least it's something, right? A place to start.

Kimberly said...

So you DO have it? Good. As a teacher, I want you, and more importantly BUB to have it for kindergarten.

There is nothing more frustrating as a teacher than not being able to help a kid in the ways you KNOW that he can be helped simply because he doesn't have the right piece of paper.

I think this is a great victory for everyone--well, as great a victory as can be when we're tossing around words like "autism."

Lisa b said...

Bub is totally adorable.
Hooray for his successes and to another productive 15 months!

Aliki2006 said...

I wondered the same thing Lisa b mentioned--why would the doctor even have to ask for that promise--it seemed a little insulting. I think it unlikely that any parent would not welcome the chance to willingly remove the diagnosis.

But there must be a sense of closure now--I'm glad--for all of you!

Jenifer said...

You sound at peace with this, even if it is a maybe. I am glad Bub is progressing so well and I am glad you will be able to get any extra help you need.

slouching mom said...

I think it all sounds very encouraging -- and right.

Lori at Spinning Yellow said...

There is a ton of gray area out there, that's why so many kids end up with the PPD diagnosis. But if it is enough to get him the help he needs then that's great.

Luisa Perkins said...

To my mind, it's all about the services you can get for him. It sounds like Bub is doing very well.

Tess's SPD is getting much better, too. Her therapist is quite brilliant; we are thrilled with her progress.

bubandpie said...

Aliki - That's what he said too - that you'd think this would be great news, but that parents sometimes resist it. There are certain monetary aspects to the services - you can get refunds for some of your child-care expenses, etc. I wonder if that drives people to want to keep a diagnosis.

Kathryn said...

It sounds like you have a fabulous doctor. I actually like it when someone is not afraid to say, "I am just not sure", and move on from there working with what you do know. I also think he is right on in that some children make incredible progress just being around other children their own age.
Good for you for doing everything you can to help Bub develop to his full self.

Mary Joan said...

A psychiatrist who says he doesn't know is one to trust. I am impressed with what he said about removing the diagnosis if it's clear two years from now that Bub is not autistic. It all sounds very encouraging. You are doing a great job.

Mad Hatter said...

As some of the others said, this psychiatrist seems worthy of our dear Bub and our dear B&P. I am glad to know that even if the fancy footwork isn't over, the dance has changed to one with more manageable steps.

Niksmom said...

This is wonderful news, really. And, from what I've been reading so far, it sure seems you are already on the right track with Bub.

Sadly enough, where I live, even the diagnosis doesnt' matter if the school psychologist says "No, he doesn't have it." Unless you're up for a big legal battle.

Glad Bub will be able to have that IEP; when done right it can make a world of difference!

Marie said...

It must give you a boost of confidence in yourself to have the experts come to the same conclusion you have... the "maybe". You sure know your kids.

I can't wait to see where he is in eighteen months!

Ally said...

I'm glad that you have a diagnosis, finally, even if it's based on a "maybe." Good to have the ISP for school, get extra therapy, etc. I don't see how that could hurt. Here's to a good 15 months for Bub, and the removal of that piece of paper at the end of it.

Bon said...

it is an odd thing to be confirmed in what all your research and worry has suggested when it is your own child, at least for me...both vindicating and yet a little depressing to be right. or maybe just denouement. not sure.

but i am glad that you and Bub have a plan, and a supported one, and i love that the doctor made you promise to remove the label if and when the time comes. i love that the box can be taken away.

nomotherearth said...

Normally, I like things to be yes or no, but in this situation, I would welcome the maybe too. It feels like it's giving Bub a chance to grow as he will, instead of how others want him to (by others, I mean "the system", not you). Bub sounds like such a lovely boy.

Lady M said...

Bub is such a sweetie. I'm glad the experts can be flexible with a "diagnosis, as long as it helps" approach.

JCK said...

Wow, to me it sounds like your doctor is really, really sharp. You are exploring all the avenues and getting Bub the extra things he needs right now.

My son was diagnosed with speech delay and had an IEP with the recommendations of speech therapy, getting him in a preschool/daycare early for enhancing language development and also OT. All of this helped. His speech caught up and he is a chatterbox now - although difficult to understand at times. But, more difficult than other almost 4 year olds? Maybe some.

Along the way we worried about various things - would he ever talk? [yes, yes, yes!], why did he melt down when "Happy Birthday" was sung at birthday parties [he gets overwhelmed by loud noises - he now sings along with everyone else], was it a sign of a larger problem that he wouldn't finger paint or play with shaving cream? [gives him the heebie jeebies, still won't touch shaving cream, does some finger painting now.]

Sorry, my post is way too long. I guess what I'm TRYING to say is that I think you are on the right path. It could be that he is autistic or it could be that he is just a different, gifted little boy.

Have you read up on temperament at all? I've been reading some facinating books on temperament that are immensely helpful and interesting.

bgirl said...

i'm not sure i can add more than what's been said.
just want you to know i'm here, reading, cheering and wanting all the best for you and Bub.

IMHO, take whatever services you can, if it gives Bub some additional help where he may need it now, then fantastic. his smarts and kindness will continue to close the gap.

Naomi (Urban Mummy) said...

Not sure what to add. I like the flexibility of your doctor, and an IEP is never a bad thing.

Unfortunately, our education system is overtaxed, and the IEP helps advocate for the individual student, or, at least, makes it possible to get certain modifications should they be necessary.

Good luck!

the dragonfly said...

It seems like you and the doctors are taking very good care of Bub. I would be frustrated with a "maybe" diagnosis, but at least there are steps to take. Keep it up! :)

-The Shiny Happy Mama- said...

Ah, good! The IEP will be wonderful for Bub and he will have all the help he needs until your very astute, smart doc withdraws the diagnosis.

Good luck with everything. Many hugs!!

cce said...

The psychiatrist that evaluated my son said one thing that has stuck with me, "Sometimes it's harder to be the parent of a child with mild problems than it is to have a child that is a severe case. At least when things are dire, the path is obvious and everyone can immediately identify and begin to deal with the issues at hand."
Sucks to have to live in the gap. For you and your son.

natalie said...

So glad you've got a doctor with a bit of nuance in him. The "for now" diagnosis really seems like the ideal way to proceed. You and Bub have both been very smart and brave through all of this.

Karen said...

wow - maybe, maybe is all you need for now to get the help for Bub and then you can leave that diagnosis in the dust a few years from now! March on, Bub!

KAL said...

Bub sounds like a wonderful little boy. I also think you have some pretty amazing professionals seeing him. We were told that S. might "lose" his diagnosis by kindergarten - you certainly can't protest that if it's merited. So even if it's a "maybe" at least you'll get an IEP and services that can only help. That's great.

bubandpie said...

Dragonfly - A few months ago, I would definitely have found this diagnosis frustrating, but yesterday it simply felt vindicating - it confirmed what I've known all along, which is that Bub is sitting squarely on the fence, and no one can know for sure which side he'll fall on. I found the word "conundrum" immensely satisfying, because it proves I'm not the only one mystified by the mixed bag of symptoms Bub presents.

Stimey said...

Congratulations! I hope to get that piece of paper too. I love the "Bub is a conundrum" comment. At one of Jack's evaluations, the psychologist admitted to being totally confused by Jack. He seemed mostly neurotypical in one setting, but completely autistic in another. Borderlines are hard. I'm happy that you're not standing on the line anymore!

Beck said...

That sounds like a wonderful plan of action - and it sounds like Bub's doctors and therapists are passionate about him. Wonderful.

Magpie said...

Mother's instincts validated again. Good luck to you and Bub.

Jenny said...

You're doing the right thing.

Way to be your child's advocate.

Kyla said...

Good for you. We love our little conundrums. ;)

I think one of the big differences between KayTar and Bub is that she is CONSTANTLY seeking our attention. I can never have conversations with the doctors because she is vying for my attention the entire time.

But "maybe"...it is always a little unsatisfying for me. I like to know for sure. This does seem like a good maybe, though.

Aimee said...

Frustration, thy name is PDD-NOS. And thy other name is Autism Spectrum Disorder.

I know you live in Canada, but have we seen the same doctors? Because the doctors we see are just as confused about Fiver . . .

I do know this, though: The kids are all right. They are better than all right, they're ours.

Christine said...

like jenifer said, you sound at peace with all of this. bub is an exceptional child--you have shown us that many times.

kittenpie said...

You know, I think it sounds like good news. Sometimes having your own feelings confirmed can be really nice.

Heather said...

So good that you are able to move forward with more of a plan now. How encouraging that you have been doing things to help Bub already.

I love Bub's cute comment about the shapes and colors!

Warm thoughts and prayers for Bub and your next 15 months on this journey...

Julie said...

From the perspective of someone who has not been in your situation, I was thinking, "ooh. diagnosis bad. label bad." But I never thought of it in terms of what possibilities it opens up for Bub. I definitely think you're right to do whatever it takes to help and if this is it now, then great and if it's not later, then great to that, too.

And what a little sweetie with the shapes and colors thing. Too much.

dawn224 said...

It seems that in any case Bub might benefit from the same therapy as kiddos w/ autism - so all in all - sounds like a good meeting :)

Lawyer Mama said...

Well, that's certainly good news and frustrating news at the same time, isn't it? I know the not knowing what will happen next would drive me slowly mad. But that's what we get with all kids, right?

I hope that Bub's next year is everything you hope for.

Marian said...

Well, good. Confirmation that you're exactly where you need to be doing exactly what you should best be doing for right now. Good job, mom.

Em said...

what a bitter sweet process this is...

thanks for stopping by my blog. i appreciate it.

emxx

Momish said...

I am glad you have been vindicated! And to know that all your hard work (and Bub's) is really paying off. As frustrating as it is to be stuck on a fence, I am sure it must feel good to know that Bub is doing so well that he does fall on the fence.

Your doctor sounds great and ready to go the distance to give Bub exactly what he needs to make him blossom to his full potential. In today's age, finding a doctor that doesn't take the easy way out is a gem.

Sarcasta-Mom said...

Well, I'm glad your journey has had at least a little finality for now. As you know, it's a long and ongoing process, and I'm right there with you.

Best of luck, as always...

Nowheymama said...

I know many others have said this, but I really like that the psychiatrist seemed so balanced about everything and talked about removing the diagnosis in two years. Also that the doctor mentioned the over-diagnosis going on.

Yay to all of you.

painted maypole said...

so nice to hear you're not crazy, eh? Sounds like a great doctor. Hope this helps!

Amanda said...

Wise comments on a sage post. Thank you for sharing this journey so openly.

Carrien said...

I'm glad for you and bub that you can take a deep breath and look at what to do next now.

Catherine said...

I have developed so much affection for Bub over the past year of reading your stories, B&P. Reading this post reminds me of all the geniuses in the world who changed history for the better - but were just bit odd. I'm already proudly looking forward to the day when I'll read that "Bub" has accepted the Nobel prize and I'll think "I read your mom's blog when you were just a pre-schooler."

Anonymous said...

As a former special educator and taking into account everything you've written about Bub, PDD is spot on. I feel strongly that he'll be de-classified at the end of that 2 years.

Carol said...

We had the exact same thing happen during our son's first 10 years (yes, that's a TEN!). Autism, then ADD, then ADHD, the anxiety disorder... All I knew was that he was brilliant AND... well, "conundrum" is a good word.

I am not pro-med, but what we ended up doing -- and only at 11 -- was put him on Lexapro, which -- for HIM -- made all the difference. He's 18 now and speaks of his life as "before" and "after" meds.
In the end, go with your gut; it's usually right on (or at least very near) the truth.

Found your blog via the Blog Awards. Congrats, by the way!

Carol

Christina said...

It's difficult, but at the same time, it feels good to have someone with a professional hat confirm what you've thought all along, isn't it?

Bub sounds so much like Cordy: lagging social and life skills, scripted speech, concrete vs. abstract. We were told many of the same things (except about the gentle nature - her meltdown kinda squashed that, LOL).

I'm glad that the door is open to get Bub any help he needs. Like you, I'm hoping that we can remove the diagnosis within a few years. But for now, it's good to have so we can access the services available to us.

(Sorry I'm commenting so late. It's been a busy week here and I'm just starting to catch up.)

Susanne said...

It must be a bit weird to have the "maybe" confirmed officially now. But how good that they really looked at Bub without slapping a diagnose on that didn't fit.

I hope that Bub will develop so that this diagnose might be rightfully removed.

(I have been thinking of you these past weeks. I'm only now catching up with blog reading.)