Saturday, October 13, 2007

Sharing Soup

It was sharing soup day yesterday at Bub’s nursery school. He brought a potato with him, proudly presenting it to Ruby at the door and adding it to the pot. The only difficulty was holding him back, getting him to wait his turn, for as soon as he caught a glimpse of his teacher he burst into excited shouts of “Hello Ruby! I brought a potato!” This was the same potato that, moments before, he had insisted must be left in the car – like any other change in routine, soup-making day was something he embraced excitedly only after his initial ritual of angry rejection.

A couple hours later I turned up with the other parents for a shared meal. The children had helped to chop pre-cooked potatoes and carrots, adding them to the pot full of pasta and broth. When I arrived, Bub was sitting in a circle with the other kids, miming the actions of stirring and adding vegetables; he took his turn climbing in a giant pot and then obediently scrambled out again when his turn was over. He had received his first half-hour of in-school speech therapy that morning, and Ruby pulled me aside to whisper that Brenda, his speech therapist, had been nearly in tears at the sight of him having fun with the other kids, adapting to the demands of nursery school. We have been working with Brenda on and off for a year and a half and she has seen Bub at his worst – stressed, melting down, struggling to form the simplest of sentences. He is indeed a different boy.

As we hunkered down around the table, perched on foot-high toddler chairs, Bub chattered happily. “Did we cut the carrots?” he asked. “Are you visiting Bub at the nursery school?” That’s when I saw it – a flicker in the eye of the three-year-old girl munching cheese and crackers across the table from us. She didn’t comment, but I could see her noticing Bub’s unusual interrogative speech, his inappropriate use of the third person. The other children chatted amongst themselves; no one spoke to Bub.

This is tiny; it is insignificant – Bub neither noticed nor cared, and indeed it would have been different if he had been seated with Stewart, his particular friend (that is, a boy in whose vicinity he occasionally engages in parallel play). It didn’t even hurt me, that tiny ripple of social rejection. But it made me wonder.

In her comments on this post, Mary Jo has been challenging me to think about the potential repercussions of an unnecessary diagnosis. I am making a choice to take Bub for these tests; he is not obviously autistic – he’s a child who would never have been diagnosed as such twenty years ago (and may not be diagnosed as such now). I cannot predict what lies on the other side of this process. Are the services we would gain with a diagnosis good enough to outweigh the stigma attached to the term “pervasive developmental disorder”? Are children more or less likely to bully, tease, or reject my son if his quirks and differences are given a label?

Bub is smart – yesterday he scrutinized the brand-name logo at the bottom of our TV and muttered, “tuh-aw-sss … buh-a.” (It’s a Toshiba – I think the “shi” part was confusing for him.) He is smart, but I want more for him than that – I want him to develop the skills he needs to make friends. I don’t necessarily desire for him to fit in (I never did), but I want him to be able to communicate and form relationships.

Would an autism diagnosis facilitate that process, or put it in jeopardy? Are children kinder or crueler when divergent behaviour is attributed to autism, ADD, or any other of the increasingly commonplace childhood disorders? What do you think?

52 comments:

slouching mom said...

IMO, kids are not likely to reject him any more or less if he is given a diagnosis.

There are a few kids with diagnoses in Ben's class and in Jack's class. This I know; Ben and Jack do not know about the diagnoses, but they sense when social behavior is a bit off and ask questions of me.

Unless he has a full-time shadow (and I cannot imagine that he would), kids are pretty oblivious about diagnoses and their implications, until they're a lot older.

Kathryn said...

Why would the kids even need to know of Bub's diagnosis? To me a diagnosis is so that you can get the correct therapies that will help Bud to be who he wants to be socially, emotionally, and intellectually. I find no need for the children to know his diagnosis one way or another. I say this because I have had dyslexia all my life and no one in any of my classes (not even my friends, really) knew I had it. My teachers didn't even know. My mother often wanted to tell my math teachers why math was such a struggle for me, but I wouldn't let her. I didn't want to be treated any differently. I know autism is a much different diagnosis than dyslexia, but when it is not a severe case I don't think it needs to be announced.
On a side note (kind of), my mom didn't even tell me I had dyslexia until I was a bit older when I could understand it and once I did know it didn't affect me as much. She also has dyslexia and noticed it in me at a very young age. She taught me a new way to learn without letting me know I was learning differently than any other child. I think telling a child "you have this" can be potentially harmful. It can obviously change they way they see themselves. I know some people will throw a fit for me saying this, but you might not even want to tell Bub if he is diagnosed with autism until it is less of an issue. ???

Karen said...

at boarding school where I worked girls were quite remarkably open about all their diagnoses. Everyone knew who was on meds and why, who was seeing which type of therapist (and why), who was getting educational services and who got extra time on tests. In some senses it felt odd to me but the students themselves experienced no shame - it's a different time then when I was growing up - kids now are taught about all this - and most are getting help before they themselves have had any time to notice or experience their own differences in an emotionally damaging way (like Bub - the snub was there, but he didn't sense it) When I asked them, most girls simply answered that while they knew they had the right to keep the information private, they had never really felt the need to. They knew they were smart and capable - and they didn't feel bad about what they needed. So, that's a look at the far distance future of high school - grant you with girls who talk, talk, talk, but there it is.

Veronica Mitchell said...

Kids are pretty cruel, with or without labels. The greater danger of a label stigma might be if it convinces Bub he can't do some things, or that he doesn't need to try. Alternatively, it may help him understand himself better and how to accommodate his learning style to accomplish everything he wants. You are raising him with so much love and hope - that may be more determinative than anything else in how he reacts to the label.

I think there is a difference on seeking a diagnosis between parents with a naive faith in experts and parents like yourself, who are familiar with the limits of expertise. Like you said, a diagnosis helps you inform yourself and parent your son better. It doesn't persuade you to turn off your instincts and hand parenting over to somebody who "knows" more.

Amanda said...

Hmm, I could go either way on that. I think so long as you allow him to make advances regardless of a diagnosis, he can thrive. Kids will be kids (bullies) no matter which side of the room someone sits on. I think you are wise to take this path, providing him with a full complement of tools and guides to help him navigate.

Aimee said...

Kids know. Period. They know when their peers don't meet their eyes, when they don't use their names, when they watch spinning objects with a fascination that has nothing to do with the actual purpose of the object. They know, and there will always be the children who are cruel because of those differences.

In our journey with The Boy, we have been blessed to find a great ally in our ped. neurologist. She is very much against labeling for labeling's sake, but she is not above admitting that she has used said labels to get a particular child the services he/she so desperately needed. She much prefers to focus on The Boy's abilities, on his leaps and bounds in development, on his engaging personality, and we love her for that. Although The Boy has definite autism spectrum characteristics, as well as other neurological conditions, she has strongly cautioned us against using the terms "autism" or "Asperger's" with him, specifically because some people will pigeon hole him in his "condition". Luckily for us, he qualifies for all of his needed services under his physical developmental delays without having to be classified as PDD or autistic.

I honestly don't know what we would do if he DID need to be classified to receive his services.
Seeing how much he has blossomed with his various therapies leads me to think that we would go ahead and have him diagnosed just to get those therapies. But of course, all of that is in hindsight. It's hard to know if all those therapies will make enough of a difference to balance out the attitudes towards the actual diagnosis.

As far as kids knowing "what" Bub "has" -- well, they probably won't for a while, unless someone specifically sits them down to tell them. They may know he's different, but they might not be able to articulate why. I prefer not to gets into the weeds of diagnoses with other children. Maybe that's wrong, but it seems to be working so far. We talk about The Boy within our family, esp. with Older Girl, because I want the people closest to him to understand him, but when it comes to school, I tend to take it as it comes.

Wow - sorry for the epistle!

Kimberly said...

A diagnosis isn't for the kids. It's for the adults in Bub's life. That little girl didn't know that you were in testing, that there might be a lable for Bub--a fancy one, not the adjectives of "weird" "odd" or "quirky". But she recognized difference just the same.

The thing is, when given the chance, kids adapt to differnece. They accept it, and understand that "that's just Bub." Kids don't demand conformity; adults do. Just like adults are the ones who need labels to make sure everyone is in their proper spot. Kids just know.

That said, in our educational climate, those labels are incredibly important. The school board will tell you that they're not. That they are an unnecessary stigma. That's because without the label, the school board doesn't have to make the accommodations and expend the resources to make sure Bub gets the education he needs. With the label, they are legally required to do so. I'd get the label.

Janet said...

I agree with Slouching Mom, I don't think the label associated with a diagnosis would make any difference. The kids who are going to reject will do so based on different behaviours, not a label. And if a label gains you access to more resources then it's likely a worthwhile exercise to go through.

Can I give you a hopeful example of kids being beautifully accepting of a peer? When we hosted Drew's birthday party at the end of school he invited some friends I knew and other classmates whom I had never met. It was a Fear Factor party and most of the party guests were ethusiastically hoping that they would get to eat real worms and dig through actual cow guts. Typical 8-year-old boy stuff. There was one boy, however, whose social interactions with the others and use of language led me to believe that he lies somewhere on the PPD spectrum. He didn't participate in most of the activities, prefering to linger on the edges. But in the one or two activities that he did join, all of the other boys cheered him on more enthusiastically than they had cheered on one another. I could sense that they were aware of his divergent behaviour and that they felt more protective of him, and his feelings, because of it.

Suz said...

I've had ADD for my entire life, but was only recently (within the last 10 years) diagnosed. To my mind, I don't think a diagnosis would have made a bit of difference in my relationships with kids. It was what it was. There are benefits and drawbacks, but it's the behavior that matters, not the label.

McSwain said...

Well, I can't comment from parent experience, but I have had more than one "on the spectrum" child in my classroom. Those who say diagnoses is for the adults are correct, although a good educator will "know" even without one. As for other kids, they will see the child as a bit quirky, but they won't know why and probably won't care all that much.

In my experience, some children can be cruel, but most have an incredible capacity for acceptance and kindness. Without knowing the reason for the behavior of children with autism, I have seen them accept the difference, accommodate it, and be amazed at the talents the child did have. That's in upper elementary school. (Grades 4-6)

Are you sure the little girl noticed the difference as much as you think? Please don't take offense, but could you have been reading too much into the situation? Kids that age usually aren't that aware, and parallel play is often still the norm with 3-4 year olds.

Lisa b said...

I don't know if I mentioned this before but a much higher percentage of the boys I teach at fancy private school are identified with learning disabilites as compared to when I taught in public school. The private school is a very academic school. For the most part the challenges these boys face seem far less obvious to me than the LD students I worked with in public school. It seems that parents who are already socio-economically advanted have no qualms about having their children identified as they think it can only help.

Diagnosis is, in my experience anyway, more helpful to students than harmful.

In my daughter's nursery school a number of the kids are in different types of therapy. This may be a function of the school being close to the private school where I teach.

Diagnoses are also helpful to teachers for the same reasons they are helpful to you. You can give teachers ideas about how to support Bub and you can have your ideas made part of an IEP that they are obligated to implement.

I will be enrolling Julia in therapies. If she chooses to go off to a lab and work by herself it will hardly surprise us but it won't be because I didn't try to give her support to develop social skills.

There is a balanace to all this B&P. The bottom line is that you know your child best and so far it seems the label has helped you.

ewe are here said...

Sadly, kids who are prone to bullying/teasing/cruely pointing out others' differences won't care if your boy has 'a label' or not.

A diagnosis, however, should enable you (and his teachers) to help him more because, in theory, you'll know what developmental issues and social skills you'll need to focus on.

Ser said...

Last winter, after several particularly challenging months, I finally filled out five long surveys that my mother-in-law had given me for my oldest child (she is an early interventionist.) After these were plugged into the computer, my son was labeled as having very mild ADHD and some sensory integration issues. I cannot tell you how helpful this was to me as a mom. I read up on these issues and I feel less confused, angry, and upset by many of his behaviors.

But I am always at a loss as to whether or not to tell anyone about this stuff. I have no idea. I usually don't, and when I have, I sometimes feel like I am trying to make excuses for his bad behavior.

So I say that diagnosis could be immensely helpful for you. But it will be a challenge to know what to do with a diagnosis, if anything is indeed diagnosed.

Have you read _Raising Blaze_ by Debra Ginsberg? I am reading it now and it is totally inspirational.

Aliki2006 said...

I agree that labels are irrelevant with regard to what other children might think, particularly when it's an issue only of what might be viewed as quirkiness and not a full-blown difference. Kids can be cruel no matter what--they will always find something to pick on, when so inclined and, in my opinion, most young children don't have the tools necessary to step back and *choose* to be kinder in the face of a diagnosis.

painted maypole said...

i don't know about kids, but I think adults are more understanding and patient, particularly if they are given some clues as to how to proceded, and therefore may help the children be as well.

Niksmom said...

I have to say tat I agree with Kimberly's statement about the legalities of the label. Besides, as I look at it labels don't equal limitations...only opportunities.

One thing to ask yourself is whether Bub is consistently speakin in third person (and talk to te therapist about it) nd if there are other things which makeyou suspect you should have him officially tested/diagnosed? It can be realy tricky, at least that's what we are finding. Nik has a medical diagnosis but not an educational one b/c of his "mental/language age" (significant delay). School won't provide the services but medical will. Go figure.

bubandpie said...

McSwain - What I saw - or thought I saw - was subtle enough that I certainly could have imagined it. But my response was a little shock of surprise - I wasn't projecting conscious anxieties. There was certainly nothing cruel in the girl's reaction - just a brief shadow of confusion and judgment, as if I caught her thinking, "No, that's not right."

Niksmom - As far as I know, the Canadian system doesn't make the same distinction between "educational" and "medical" diagnoses - you go through the medical diagnostic process and then the education system responds to the results of that.

Thanks for the input, everybody - and encouraging stories about kind, tolerant children are VERY much welcome!

Catherine said...

I wonder if a lot of it depends on how the parents treat the diagnosis. I think of the story of Ray Charles and his mother...and I feel certain you would be that kind of thoughtful, helpful, mother.

J said...

I'm very much on the side of not seeking a diagnosis but rather identifying and working on specific difficulties. This wouldn't be true if he were right there in the labeling and was a "classic" type. Then you'd want and need the related services.

However, looking at the growth he's made just being in preschool I really think that you are more likely to limit his options (oh, PPD services don't include X, so he doesn't qualify for it) pushing for a diagnosis that only sort of fits.

I don't think it will change how other kids treat him, I do think it can influence teachers perceptions and his own perception of himself in the future. He may identify unrelated parts of that diagnosis to himself, unnecessarily, whereas without a label he can think of himself as someone who has to work hard at remembering to...

I wouldn't worry too much about the little girl -- kids that age all have oddities. She may (or may not) have really registered this about him, but I can guarantee that there are lots of strange behaviors there!

Mary Joan Koch said...
This comment has been removed by the author.
Mary Joan Koch said...

I have decided to stop commenting on your blog, though I certainly will continue to read it. Maybe you will change my mind.

I have expressed my opinions fully and am beginning to sound like a cranky, hostile broken record. I am truly sorry if I have caused you distress. You are a great mother and Bub is so lucky to have you advocating for him. But we are on different pages on this issue. Instead, I will talk about these issues on my own blog. Thanks for your forbearance and warm welcome. I welcome anyone interested in these issues to join the dialog over on my blog.

bubandpie said...

MJK - Do we need to change each other's minds in order to have a blog-commenting relationship? What we are disagreeing about is essentially unresolvable, since we're looking at hypothetical outcomes - there's no way to determine what would have happened if PDD had been diagnosed more often in the past, or to weigh with certainty how it will affect children today.

If you've read J's comment (just before yours) and Aimee's, you know that you're not the only one who is wary of a diagnosis - and I will add that I have no intention whatsoever of putting Bub on medications, no matter what the outcome of the diagnostic process.

You haven't convinced me to boycott the final day of testing at the end of this month - but I will certainly raise the concerns you've mentioned and ask whether there are services Bub can access even without a diagnosis.

Mimi said...

I love all the stories about the kindness of children that commenters are offering up: how heartening! it really does seem like Bub is making such huge strides, and doesn't part of that have to be about how you've already been advocating for him? seeking help for him? The process of 'diagnosing' has led to some really great results for Bub. So it seems to me like you're on the right path.

Cyndi said...

I think that if the children grow up with him then they will accept him for who he is. If he is thrown into a situation later when it is harder to make friend anyway then it may be more difficult.

Stimey said...

You know that I am having these very same issues with my Jack. I learned a lot from this post and your commenters. I think it is very helpful to have dissenters as they may bring up something that others may not have thought of. (Provided they're nicely dissenting, of course!)

Mary Joan Koch said...

Thanks; I will unbanish myself though I did remove my last comment for being too strident for someone else's blog. I am so glad to hear you wouldn't consider medication. That is my biggest concern with early childhood diagnosis. It is a dreadful trap if you can't get individualized educational services without agreeing to a diagnosis. I was fortunate that my different kids were accepted into a pull out gifted program, but sad that the rest of their classmates didn't enjoy a more creative, individualized program. Each child is gifted in her own unique way, and today's testing-obsessed schools too often fail to nurture those talents. In my girls' early school years in Manhattan, they thrived in an open education classroom.

Beck said...

Both of my older kids have been diagnosed with speech disorders, which is weirdly angsty for me: will the other kids treat them differently? Will their in-school speech therapy make the other kids think that they are weird?
And the answer, for both kids, has been that other kids have been pretty much oblivious to it. Bub will be Bub, his own child and the other kids will take him as such.

Lori at Spinning Yellow said...

OK, I have to admit that I did not thoroughly read all the comments, but will put in my own experience anyway.

In the US, my son received services from the IU for early intervention under the general heading "developmental delay". Once he started Kindergarten, he needed a specific diagnosis to get any in-school services. I think this is what Niksmom was referring to.

So, he does not have such a diagnosis and no longer receives paid for in-school assistance. This is unfortunate. We are able to continue OT for him privately, but I am sure many families would not be able to do this.

I think if we had pursued a formal diagnosis we would have received one and then he'd be able to get what he needs now.

In Scott's school (now in first grade) kids receive services in and out of the class. I think the whole situation makes the children more tolerant and understanding of differences among them.

Also, (don't know how this works in Canada) b/c Scott is able to do all the coursework required for his grade the school really doesn't care about his social/emotional issues. As long as he isn't terribly disruptive it just doesn't matter to them.

I say, pursue the diagnosis, the more knowledge the better. I read (I think it was a TIME magazine article on Autism) a doctor said something like, "I'll label a kid a zebra if it will help them get what they need."

Blog Antagonist said...

The label issue is one I have struggled with a long time. Longer than I should have. I have feared stigma. I have feared compartmentalization. I have feared diagnosis imposed limitations.

I could say a lot more but I'll just say that truly I wish I had not resisted so long or so arduously. His progress in the last couple weeks as a result of certain interventions combined with drug therapy has been nothing short of amazing.

You're doing the right thing.

Eve said...

I'm going to be a John the Baptist (voice crying in the wilderness) and write from the perspective of a professional who has seen a lot and raised several children to adulthood.

First, children do not remain kind and sweet. They unfortunately are forced by life, school, parents, and the universe into difficulties that make them abandon the real, sweet, holy selves they are and become, at best, shadows of those selves and, at worst, monsters.

Children who are different, labeled, and separated for special education are ostracized, and the hells their peers put them through are increasingly invisible to even the most caring parent because the child assumes that he is in that setting because you will it, and he is in it on his own. He can suffer in innumerable ways in silence, and you alone will be the one who may be able to undo it and help him years later, if you can.

If not the chances of finding a truly empathic, competent therapist of mythic proportions are not high.

Second, these increasing diagnoses indicate as much about our society as they do the children themselves. I am competent to diagnose your child and there is nothing you've written that makes me raise an eyebrow and want to do so. I wish I knew him personally, because it would take a lot more than what you've recounted to convince me that he's got something wrong with him. Rather, he seems like a lot of other little boys who don't fit in.

But I've already written about that.

Other young mothers have written that children are oblivous to diagnostic labels, but this is untrue. The moment your child is taken from the room and to a special class or tutor, his fate is sealed, even if he needs it. By third grade, children become cliquish and by fifth grade they collaborate in the labeling. The teachers will know the labels, and they will treat him differently (research supports what I'm saying).

I would not allow anyone to label my child unless he was obviously disabled, and that's from personal and professional experience.

Testing? Yes, by all means. Understanding? Sure, go for it. Labeling that becomes part of the permanent record? No way.

I'll explain why later this week by blogging about it, as I don't want to overstay my welcome.

For every anecdote told here, though, there is research evidence that I find pretty convincing. All is not as it appears to be, but a simple little comment isn't going to be very helpful to you.

Mary Joan Koch said...

One more question--Bub is obviously very bright. In my experience, very bright children have lots of problems adjusting to grade school. Different children have more or less difficulty adjusting to being bored. Some daydream; some disrupt the class; some become the clas clown; some are turned off by school; some conform. My gifted scientist missed an extraordinary amount of grade school-- she was miserable; she taught herself splendidly at home; I was home with her younger sisters; we couldn't afford private school. Full-time home schooling seemed the only alternative, and I wasn't prepared to make that commitment.

If Bub has an autism diagnosis, will he get the services he might need the most, adequate stimulation for his giftedness? Schools are often particularly remiss in educating the mathematically gifted. Let's be realistic. Teachers who are good in math teach high school. Michelle's teachers acknowledged her math gifts, but didn't know what to do with her.

Marian said...

This is Marian, not anonymous. =)
Big questions. I wish I had a little more energy to form my thoughts into sentences tonight, because I have a lot of them to share with you! For reference: One of my four kids is "on the spectrum" (initial diagnosis at 3 was PDD, later changed to "high functioning autism" and then changed again by another psych. to Asperger's -- the last guy is very wrong, he doesn't fit the criteria-- I go with HFA.) He also has OCD, which developed later, multiple perceptual learning disabilities (over an otherwise intelligent mind),and all of the diagnostic criteria for ADHD, though we don't want another acronym. He is now almost 11 (developmentally probably about 8) and is homeschooled after his last crisis period made school an impossibility in fourth grade.

There's no huge harm in just getting a diagnosis. It may not even be right, and you may have to revise or refine over the years, but it's a starting point. Then, do whatever you want to do with it. Do whatever you believe is beneficial, don't do anything you don't want to do. You are in control of it. Tell whom you want; don't tell anyone else. In early childhood, there tend to be a lot of services now, and you will be able to take full advantage. Later on, it's much more murky, and most professionals don't know what the heck they are talking about, though they will give answers that sound neat and tidy, issues are much more complex when your 11 than when you're 4.
(to be continued)

Marian said...

It can be helpful for a parent, in moments when behavior is baffling and frustrating beyond belief, to at least have basic confirmation that, no, it's not just my bad parenting and I'm not crazy, even if that doesn't solve anything. AND: in many cases it can be a relief for a child, when he is older and ready, to realize that, yes, there is a reason that I struggle with certain things, and it's not just my mom who says so. I am not just weird.

As far as other kids go. They don't care about labels very much. They don't have to know a particular label.If they realize that a kid is different, they realize it. There are times when knowing that a peer struggles with something bigger than himself can inspire a little more compassion and helpfulness. But the bottom line is that, if a child is different, label or no, known or not, they WILL be teased or bullied along the line. And a child with autism will not just figure out what to do. And teachers will likely not see it or respond appropriately ( I was not surprised to see a comment above from a teacher saying tha mos kids are very nice about it all!)Sometimes it's the very kids who are nice, who become awful out of teacher's sight. Please, please trust me (and this is from a wealth of others' experience besides my own), if your child has autism, do NOT put him on a school bus with any other children over 5 years old.
And thus concludes my poorly written first novel. I wish you the best as you make your decisions.

KAL said...

Bub sounds so much like Sam. I don't know, I'm conflicted about diagnosis too. I haven't really thought too far ahead to how a label might affect him as he moves into elementary school. I know that he needs that label right now to help him move forward.

I just hope that as the number of autistic kids swells in our schools that there will be more awareness and tolerance. I know from talking with my teenage stepkids that they each know kids on the spectrum, that it's no big deal and I've even heard a "he's cool" thrown in about one of their classmates.

I guess I would say go for the label for now. Here where we live we don't have to commit to an autism label until kindergarten, so we haven't for S. yet (different story for his brother). Not sure how it works in Canada, but trust your instincts here. You're obviously a good mom.

WONDERWOMAN said...

I've recently found out that I have an audio processing disorder, and I really wish that I would have known when I was younger it would have been so helpful. It inspires me how many steps you've already taken to understand what is going on with your son, you're doing a great job.

Emily said...

Kids are kinder if there is a diagnosis because their parents know and usually come down harder on the kids for being unkind.

Mouse said...

Trillian and I are dealing with this too now, and I'm certainly no closer to an answer than you are.

When I dream up my ideal, based on my gut feeling of what's going on with Scooter (and which has been affirmed by the dev. ped.), I would like for him to have extra supports through the school for kindergarten and first grade. But I (and the dev. ped.) feel there's a good chance he'll have caught up--mostly socially, but also with the speech--by second or third grade. And so the question becomes, could he then shed the label or would he be stuck with it?

From the other side, I have my experiences in the classroom, like Lisa B, an expensive private school where affluent parents were more than happy to get their kids labeled if it meant extra accommodations. The funny thing is that I still had several undiagnosed students I would feel certain should have some label--but just by thinking of them in this way, I changed how I dealt with them and greatly improved our interactions. So I think with the right teachers, it's possible to improve the classroom setting without an official label.

Mary Joan Koch said...

My biggest anxiety about preschool labels is that once a child has a psychiatric label, can psychiatric drugs be far behind? I have known many instances where the school insisted on such treatment. I would home school my child before I would consent to psychiatric drugs. Remember I have taken some of them, so I know what they do to your mind.

Maddy said...

From my position, I am not qualified to offer an opinion but it seems a more than valid question.
Best wishes

Kyla said...

At the hospital on Thursday, while we waited endlessly in the lab another little girl was playing with me. She said hi to KayTar and this is how the conversation went,

Girl: Hi.
Josh: Say Hi KayTar.
K: Hi KayTar.
Josh: No, just say hi.
K: Say hi.
Josh: Hi friend!
K: Hi friend!
Girl: (looks at KayTar and then me, like "What??")

It does start being noticeable early, labels or no. You notice the DIFFERENCE not the label, and you can't prevent the difference by not giving it a label.

Omaha Mama said...

I think I've studied several units in multiple graduate level courses on the diagnosis and labeling of children. I don't think children know or don't know about "autism", for the most part. As he gets older, if Bub is on the spectrum, I think the best thing he can do is be aware of difference, because he can be self-aware and use what he has learned about social boundaries and communication in a world that may not always makes sense to him. What it can do for the positive is give professionals a common language to use for intervention. And to give the school a diagnosis so that Bub qualifies for extra services in. Labeling is an interesting quandary, and you are so smart to be aware of it.

Marian said...

I stopped back and saw Mary Joan's comment: "...once a child has a psychiatric label, can psychiatric drugs be far behind? I have known many instances where the school insisted on such treatment."
I guess I am assuming that Canada is not that much different than the U.S.in personal freedoms...
To my knowledge, no one has the right to force your child to take drugs if you don't believe it is best. It's possible that someone may "insist" on it, and even that you deem it prudent in the end to back down from the insistence, give up that school or service, and move on, possibly with substantial sacrifice... but you are in control. (BTW, I just have to add that, for many older autistic kids, homeschooling proves to be the best, first choice setting for them and their academics, not just a last resort option! But that's another topic.) Each parent has to weigh everything they know and see and hear, pray,think, and decide what is the very best for their child. And you will no doubt do it well.

J said...

It occurs to me looking through all of these comments again that what you really need to find out is the system for getting the treatment you need in your country/school system.

Kids (at least in my state, in my area) can receive specific needed services without having an overarching diagnosis. That is, they can receive speech therapy and other services from smaller order diagnoses rather than bigger ones.

So, if you can, get specific diagnoses that target specific problems (speech, visual processing, whatever). Those can be written into educational programs as needed, and are much more likely to address his specific needs than a teacher treating him like the other 5 [insert diagnosis here] kids she's had.

For most teachers, knowing that a child should sit somewhere specific in a room, or have things repeated or needs it written down or in a picture -- they're on the ball with that. It's concrete, it makes sense to them and if the interventions are correct, they'll notice a difference if they *don't* do them.

But, a more global diagnosis leads people to think of their generally more limited knowledge of one or a few other people with that label...and treat your child in that same mold. Even if they don't think they're doing that. My youngest has epilepsy and all you have to do is say that and people upon hearing this often ask about really specific problems, you know, based on their cousin/neighbor/kid that sat next to them in 3rd grade... So far no one has really had anything much to say that's at all relevant to his type of seizures/medication etc.

Now, that's not true of specialists, other people with far more knowledge -- but the chances of running into schools filled with people full of up-to-date broad knowledge of every diagnosis in there? Pretty slim! Give them specifics of *what to do* so that they don't have to rely on their own, often misguided, imaginations.

So, in terms of having him tested? No biggy, one way or the other, although it may miss important aspects of his functioning because they don't fit into this testing. BUT, definitely don't push or accept a label that doesn't fit him perfectly. Ask for smaller scale labels, instead.

Nowheymama said...

This is not the same thing, but we believe it's important for K's friends and classmates to know about her allergy. For safety reasons, of course, but also so that they can understand why she doesn't eat the same things/can't participate in some activities (like cooking). For the most part, her classmates have either ignored the difference or become helpers, wanting to bring foods that are safe for her to eat and learning to keep dairy products away from her.

The school nurse was surprised that we wanted her medical information to be made public in this day of privacy laws, but we feel it's the best choice for her.

Again, I know this isn't the same situation, but it's the closest I can come.

kittenpie said...

I don't think it would make a big difference either way. Children know if other children are different, whether it's made obvious with a label or interventions or not. I think if you are seeing success with the early interventions, that is worth its weight in platinum, and I don't see any social repurcussions that are any worse, really, than those brought on by just being a slightly offbeat kid.

edj said...

I have a friend with an older child who is struggling with this very same issue. He is socially immature and she wonders if there might not be something more to it. (more details involved, of course) She thinks a label might make other kids more sensitive and understanding, but her husband worries about it saddling her son with a burden he must carry for life.
You always inspire animated and passionate comments, so I'm looking forward to reading them and to hearing what you decide about Bub. He seems such a bright, intelligent, FUN child!

kgirl said...

The only thing that scares me about rampant diagnoses is the rampant medicating that goes with it. Kid not paying attention? We have a pill for that! Kid not sleeping? We have a pill for that! Kid making your life more complicated than you had expected? Yup, you guessed it - we have a pill!

Not that I'm trying to trivialize a serious situation or insinuate that you would not be totally and completely on top of any such recommendation - you are one of the most astute, intuitive, educated parents out there. Just saying that in the grand scheme of things, we are a society that likes to make things go away as easily as possible. Just not sure for whom.

Lawyer Mama said...

I can't speak from personal experience as a parent. But I had a long conversation with my aunt about this last night. Her youngest son, now a senior in high school, was very similar to Bub. He was not autistic, but he had many of the same quirks Bub does. Now, he still has problems reading social cues. Dawn (my aunt) said that she doesn't regret any of the therapies and interventions they did with K because it helped him to assimilate. He's gotten noticeably better as he gets older. It's taken him longer, but she knows that he wouldn't be where he is today without the help.

The thing is, kids know when someone is different. You've alread seen it in Bub's classmate's eyes. Whether or not he's diagnosed with anything just may mean the difference between getting help or not.

Cathy said...

I wouldn't worry so much about the kids. It's the adults who will glom onto a label.

That could be good or bad, depending on the educators involved. Will they use it to the child's benefit? Or will they use it as an excuse for problems in the classroom?

Heather over at the Queen of Shake-Shake has been posting on this issue lately. In her case, the school's desire to label her son seems to be limiting his options.

Honestly, I don't know what I'd do. I guess it would come down to what sort of benefits would accompany a diagnosis and label and whether those would outweigh any negatives that might come from such a label.

Lawyer Mama said...

Oh, I also wanted to say that K, my cousin, despite his need for speech therapy and other interventions, tests at the genius level. Bub is clearly gifted.

bgirl said...

i felt my heart pull right along side yours at this post. my guy too has that unusual use of language, and i've had the same feelings you express, witnessed the same type of interactions with his peers and felt the worry of what will become of this sweet sweet boy.

this is your journey and very personal. each of us fortunate enough to have these amazing souls in our lives, get to make the decision that is right for us, for them. our diagnosis changes or evolves and for me, the name has lost its importance (SPD, ASD and as of late it is PDD) but not what goes with it. my guy is different, beautifully different as is Bub so of course, like you my mission is to do everything i can to help him with his challenges (i.e developmental preschool, speech, OT, PT, supported peer play,role-playing, and so on.) i am a strong proponent of early intervention and do believe that it makes an incredible difference.

i honestly haven't thought about his peer group knowing his diagnosis. instead i just thought of it as a means for me to better advocate for him, with school, doctors etc. the best help i've had to date, i've found on my own through reading. please let me know if you'd like a list of the books i've read that proved useful.

in my case, i have found that at times he has frustrated some kids, especially if they are a bit older, but most kids love my little dude, since unlike "neurotypical kids" he is so easy to play with and radiates a kind energy...this far outweighs his ability to relate to them. they just sorta smile and go about their business with him.

like all things, it is a learning process...keep learning and he will too.

bubandpie said...

bgirl - Bub, too, radiates a kind energy. And the little girl I mentioned in this post approached me yesterday as I was picking Bub up and said to me, very seriously, "[Bub] is good at nursery school." She seems intrigued by him - and I guess he's passed inspection. ;)