How to know when to seek diagnosis?

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Hey all - new account, but I've been reading through forums with great interest for several weeks. I apologize in advance because I'm sure this post will be long.

A little background: I have 2 children, a 6 year old daughter and a 3 year old son. My daughter is very bright and has a lot of friends at school. She is in a lower elementary Montessori classroom and gets along with everyone, loves to tell jokes, gets invited (and vice versa) often for playdates, etc. She seems to interact well with her peers, although she can be a little moody at times. She is also a strict rule-follower and has some minor sensory things...she hated loud noises as a younger child (now they don't seem to bother her as much), and is somewhat picky about clothes. She gets upset if she physically can't do things the way she wants to (example when she was much younger and learning to color, she used to want ME to do it because she got frustrated that she couldn't stay in the lines). I.e. perfectionist. She also tends to be fairly literal (although she understands sarcasm, jokes, etc very well for her age) and is almost clinical/lacking empathy at times. As a baby my mother-in-law noticed eye contact issues with her, but I haven't noticed it much as she has grown up. She gets upset if I correct her behavior at all...says she's "embarrassed" that we're talking about something she did wrong. She is very hard on herself, and honestly she pretty much doesn't do things she shouldn't so it's not often an issue. At school, and at preschool before this, reports from teachers have been nothing but glowing.

My 3 year 2 month old son has been in speech therapy since 18 months. He has progressed a TON and his therapist told me this week that she thinks in another month or two he will not need services anymore. He can be hard to understand at times but now speaks in full conversations. As his speech has improved he can now tell me a lot about his day at preschool (montessori), his friends, ask questions, etc...he pretty much talks a blue streak all day long lol. His favorite words are "Mommy, look!". He's also very much a sensory seeker and has been since birth...he wants to wrestle hard, throw himself around on the couch, etc...he also occasionally runs in circles, shakes his head back and forth (not much anymore, that was more like around 18 months-2 years)...I don't know if it's stimming per se because he does different things all the time, but it's definitely sensory seeking. He rarely sits still unless he's watching a TV show (they are allowed 1-2 shows per day)...so he CAN sit still, even at movie theaters, he just prefers not to. We joke that he lives life "out loud", because he's an in-your-face kid who does everything 110%...whether he's upset about something, or loving you, he does it full force . He has a strong personality and is independent...he wants to do it himself, thankyouverymuch. He adapted easily to going to school and LOVES it. He adores other kids and plays with them, although mostly in a physical way i.e. running, racing, swinging, etc rather than back-and-forth play. He hates to "lose". The other kids seem to like him, they all run over happy to see him and saying his name when we arrive at school, and his teachers adore him. He is mildly lactose intolerant and has always had intermittent stomach issues...we keep him on a low dairy diet but not dairy-free...I am also lactose intolerant and I know the less you eat it, the less you'll be able to, so unless it's causing him major issues I'd like to keep him exposed to it at least a little bit. He is reluctant to try new foods and takes a long time to fall asleep at night, although he's not disruptive...he stays in his bed with his "lovey" blanket and sings or talks to himself until he falls asleep. He is probably mildly delayed in fine and gross motor skills, but not remarkably so...he walked at 14 months, learned to jump around age 3, won't pedal a trike yet, and has issues holding a crayon properly.

About 8 months ago, I had him at the doctor for a minor illness. He would have been 2 years 4-5 months at that time and had been in speech therapy already for 9 months or so. She recommended at that time that we take him to have him evaluated, which took me by surprise and seemed mostly due to his lack (at that time) of words...he had maybe 20-30. I immediately turned around and asked his speech therapist what she thought, because she works with many autistic kids, and she told me that it never once crossed her mind with him. The route that the pediatrician recommended would have cost us over $1000 out of pocket to have him evaluated, so we elected not to do it at that time. He was already receiving speech, which was clearly the largest of any issues he had. Of course, it's always in the back of my head now and I'm afraid that we're doing him (and possibly our daughter as well?) as disservice by not having them evaluated by professionals to possibly help head off FUTURE issues.

In short, I'm confused. Thanks if you made it this far!

You're right to keep your eyes open, and please pay more attention to the opinions of parents on this issue. I'm just an autistic teacher, but I hope some of the following is at least a little helpful.

I would certainly trust the speech therapist more than the doctor in the case, because of her greater experience both with your son and with kids on the spectrum. The reason for pushing for diagnosis would be to get him into speech therapy which he's already doing with someone who works with kids on the spectrum.

I don't see any reason to get your daughter diagnosed at this point, but I would strongly recommend three things:

1) Get her involved with Campfire or a similar group that does structured activities with other kids. If she's already in such a group, make her go. They are fantastic for perfectionists.

2) Encourage her to read and/or watch movies that encourage empathy. Get her analytical brain wrapped around the concept.

3) Watch out for third grade! The kind of perfectionism that you describe often develops then. If it's showing up now, it could either be a sign of mature frustration with childish skills OR a sign of an anxiety problem. If things get worse as she gets older, seek therapy and possibly diagnosis.

The big thing with bog kids it to look for places where these little differences are starting to cause problems-- not big ones, don't wait for that-- but things where you see issues that go beyond normal kid stuff.

I'm of the mind that a label is worth what it gets you. If there isn't anything you need from a label, then you don't need the label. Only you can decide if there is a need the diagnosis can fill. For us, the label did two things: (1) got my child services in school, including those we knew he needed (OT) and those we hadn't picked up on (pragmatic speech), and (2) gave us the information to be more effective parents with him.

I guess that's part of the issue too...clearly, both of my kids are bright and sensitive. But as they are the only kids I have, I don't know where the line between "normal" and "beyond normal" lies. I have never really had an experience where, in a large group of children, one of mine clearly stuck out as "different". I don't want to miss issues cropping up, but also don't want to seek labeling just for the sake of labeling, if they are indeed on the spectrum somewhere.

It's never easy, is it? Thanks for sharing your thoughts.

I will add my usual tag-on: we are currently pursuing a diagnosis for DS, are getting the full workup just before Thanksgiving, which I think includes the ADOS and the like. However, I am fairly sure we will get some kind of spectrum diagnosis for this reason: the accommodations for spectrum kids work for him, they help him cope; I think this is as good a rubric as any to judge where your kids are. The key is "what does my kid need," not, as some look at it "what box does my kid fit into." If you get #1, go for it. If #2, skip it.

I started seeing it more when my son reached first grade (he was always different, but once they get into school things change). I tried volunteering in the classroom (total failure; he wanted me to himself), and I was spending lots of time hanging out after school, watching kids, arranging carpools, etc. Kids were sometimes even coming up to me asking things like, "why does your son do X?" He just wasn't like them. I needed a lot of help identifying the specifics, but I could see him struggling where other kids were not, especially in academics, where he was quickly getting labeled stubborn or lazy, because he was so bright verbally, and yet so completely unable to produce work product.

Point being ... keep your eyes open. Be involved. Pay attention. That is how you start to get the most important clues.

I keep looking at where people have quoted me and wondering what "bog kids" are.

Sorry.

I don't know what to say about your son. He is young and there are a lot of things that can contribute to what you described. If his speech therapist doesn't see a problem I'd just monitor it. Your awareness is now raised and if there is a problem, now you're paying attention and will see it.

I had a comment about your daughter. What you said about understanding humor and sarcasm - watch that carefully. Turns out my daughter (15 and only now diagnosed) was faking a lot of that. She's very verbal and can get sarcasm from familiar people. Jokes she's less certain of. But she faked it well. (It gets harder and harder to fake with age, I'm afraid.) It's one thing that kept us from catching this for so long. I did wonder a couple of times over the years, when she missed a joke or laughed a little too late, but she could always explain it so we didn't really quite see that it was (is) a real deficit.

I want to say how much I agree with this, and it can be a tough distinction to understand. Being able to analyze something like humor or empathy is not the same thing as experiencing it in a neurotypical way. Watching for things like what you describe here is very important.

Interesting...I'll keep an eye on it. I can definitely tell the difference between when she "gets" a joke vs when she doesn't...she got a joke encyclopedia for her birthday and half of the time asks me "why is that funny?". That's not unexpected to me though, because a lot of the jokes are based on word play that can be hard to connect together at just-turned-6. i.e. "What do you call a belly dancing pig? Shakin' bacon!" means you have to connect that bacon comes from pigs, not something I would expect her to know at this age.

I am a room mom for her school and volunteer for field trips etc as much as I can. I usually end up feeling much better when I see her interact with her classmates, but am very curious to see what happens next year when she goes to public school.

Yes. This is a good way to describe it. My daughter's ability to analyze (correctly) and discuss humor obscured the fact that she wasn't actually experiencing it in the usual way... Honestly, though I see this clearly now and I can see it happening daily, it is still a complicated thing to really understand.

I'm usually big on Early Intervention, but I think it's quite possible that the doctor was just being cautious because limited words is something they're now watching out for. (Not necessarily a bad thing -- my son's doctor didn't take my concerns seriously at all, and I was told that "everything thinks their kid has autism these days." Like I wanted the latest style in handbags!)

It is quite possible to have speech issues without having autism, as far as I know, and since your son is doing so well with the speech therapist, I would tend to give more weight to her opinion. And it seems more reasonable to put your money into your son's therapies that you know he needs rather than a diagnosis that may or may not be useful.

Your daughter sounds normal, perhaps gifted.

Your son sounds normal other than speech delays. If the Pediatrician recommended it, you should do it, IMO.

I agree with BJ. My son is 5, and has NEVER adored other children! I think your son just has a speech delay. Does he have any strange or obsessive interests in things? Does he repeat phrases over and over? Does he flap his hands or rock or bang his head? Of course, we can't diagnose over the internet, but to me, there is not too much to worry about with your son or your daughter.

I agree with DW totally on this. IMHO, a diagnosis is a tool, and what you do with it depends on you. I have used the diagnosis to obtain extra services, interventions, and IEP accomodations for my son. I have also used the diagnosis to continually inform and educate myself and my son.

I often say this, but try the M-CHAT test which you can find online, its gets down to the nuts and bolts in 20-or so question. Its supposed to be a screening tool, but it might save you the bother of a potentially unnecessary and expensive DX.