For mild issues, what does an evaluation get you?

[Pintosrock]

Dd (a preschooler, not yet in school) has been receiving services (speech therapy, special preschool) through the school system. They've stated that her issues are no longer big enough to continue receiving services. Our pediatrician is gently urging us to consider taking her to a developmental pediatrician for a better evaluation.

 

We both agree she's not autistic and is happy at home. I plan on homeschooling when the time comes. So, what are the benefits of a full, private eval?

 

I don't think we have any (big) problems, but then I see other posts where people are trying to convince their pediatrician to give them a referral, and I wonder if ours is seeing something in dd that I'm not?

 

Long ramble! Bottom line, what are the benefits of getting an evaluation?

[PeterPan]

Saying this really gently, but people don't go to developmental peds for colds. Something is up and the ped knows it. He's only agreeing with you to keep things calm. Why say what it's not before you've had evals, before you've taken the time to discover what you were missing and what dots you weren't connecting? 

 

A developmental ped would be fine, if that's what he says. Personally, I wouldn't consider that a stopping point on the autism question but would want a full eval, multi-factored. That means SLP, OT, play/ADOS, multi-day or multi-hour. One hour with a dev. ped is really cursory. 

 

But yes, get the evals. Here's the problem. You can have 20 people reply on this board and tell you how unhappy it is NOT to do evals, NOT to pursue it, and realize things got missed. We can also tell you how unfun it is to advocate later when you had crappy first evals or were blown off because you weren't noticing everything to help that person in that office for that one hour appt connect the dots.

 

So don't blow things off and don't decide what it isn't. Yes, the school will be really questionable with services. It's why disability lawyers exist and cases go to the Supreme Court. If you want what needs to be done, you're going to have to advocate. Getting information lets you advocate. Right now, the only information you have is from the school, and the school's ultimate goal is to do the bare minimum the law requires and hope their budget survives. In other words, they're trying to save money, while you're trying to tell them to spend money. Do you REALLY think they're going to dig deep and do everything? Sometimes, maybe. But really, getting outside, private evals is your way to make sure you have objective information that helps you advocate for your child completely and effectively.

 

Fwiw, I've been through the IEP process how many years now. So not fun. I know not to trust them and I STILL keep finding more ways they've screwed me. I'm bringing in MORE outside help. This is a constant issue, making sure you're getting objective assessment so you know you're REALLY doing what needs to be done.

[geodob]

One major benefit, is that it provides a sort of; 'User Guide'.

Which is unique to your DD.

 

So that you can understand and help her realise her potential.

 

[nature girl]

Did your ped say specifically what he thinks her issues are? Is it just speech, or is there more? For me, it would be a tough call...If evals were free, there's no harm in them, and they may either ease your mind or tease out issues you may not have seen yet. There's a chance you might be missing something that you'd be much better off remediating early. But on the other hand evals can be quite expensive, and it may be more beneficial when she's older. At 6 they can do a larger battery of tests.

 

Have you asked the preschool teachers what they think? I think it's hard, as parents, to evaluate our own kids, we're just so used to them that we may not compare them accurately to other kids their age. For example, my daughter is an only, and her issues weren't extreme, but if I'd known what to look for I would have realized earlier there was something going on. I kept trying to convince myself that all kids had behavior issues, all kids lost patience easily, making excuse for her inability to sit still for library programs...I just thought she had a fiery personality! It wasn't until her pediatrician started prodding us to try behavioral therapy that I thought hmmm...maybe there IS something out of the ordinary going on here, and I began looking more closely. And saw that she matched every single symptom in the ADHD profile. All that to say, we can have tunnel vision when it comes to our own kids, and not see the things that those with a much broader perspective notice.

 

 

[OneStepAtATime]

The school is trying to get your child to a functional level so they don't have to spend additional funds they probably don't have.  They are not set up to work with your child to THRIVE, only to survive.  Some schools have great systems in place to actually really tap into an individual child's needs and help them thrive but that is the exception rather than the rule.  Besides limited funds they also frequently do not have the training and expertise to fully understand what they are seeing.  A private evaluator may have more experience/training and is there for your child specifically.  They are (theoretically) going to try to help your child thrive, not just survive, and not just in an academic setting but as a whole human being.

 

Also, I agree with OhE, don't walk into this with preconceived notions if you can help it.  Keep open to possibilities.  My mind was very closed the first time my kids were evaluated (through the school) and the school did not have the expertise to know what they were looking at anyway.  We all dropped the ball and my kids paid the price.  

 

 

Potential benefits for getting a full private evaluation for a child that young:

 

1.  Catching problem areas before they become problems (starting or continuing intensive assistance when a child is young can net much better long term results than remediating further down the line).

2.  Catching potential problem areas before those areas undermine the child emotionally.

3.  Catching potential problem areas that were not even on the parent's radar that might have gone undiagnosed and unremediated for years.

4.  Catching problem areas that will always be problem areas but early enough that the parent has a chance to find ways to get help in assisting the child in how to work around, through or with those problem areas.

3.  Finding hidden strengths that any problem areas might have been masking.

4.  Finding hidden strengths that no problem areas were masking but standard academic approaches don't tap into and may go unnoticed and unused otherwise.

5.  Confirming strengths the parent suspected or believed were there but may not have even realized how great the strengths are or that those should be specifically targeted.

5.  Reassure the parent (and the pediatrician) that there actually ARE no underlying issues and the child is just fine.

6.  Uncovers additional issues that have not been obvious yet but will become far more serious further down the line.  This gets the parent asking the right questions and getting them moving in a more knowledgeable direction to help their child early.

 

Potential cons:

1.  Cost for an evaluation that may net nothing even if there is something there because the child is too young for the evaluation to be effective.

2.  Parent fails to recognize that having this one evaluation may not net all answers.  All future decisions are based on this one evaluation done when the child was very young.  Other issues are not diagnosed/properly dealt with and the child struggles unnecessarily later on.

3.  Evaluator is not very good at their job or does not have enough experience to tweak out certain specific underlying issues that the child is struggling with.

4.  Child is 2e (twice exceptional - meaning possibly at least mildly gifted with learning challenges) and the evaluator has little experience/training in evaluating a 2e kid.  Results net very little in the way of useful info and the parent wasted a lot of time and money.

5.  Evaluator is good at doing evaluations but offers little to nothing in the way of explanation/support/guidance for what all those numbers mean.

[Crimson Wife]

FWIW, both the general pediatrician and I would've said that my DD did not have autism at the time she went for an eval at the developmental pediatrician. Her issues at the time were easy to chalk up to, "oh, she's just a late talker" but the developmental pediatrician realized it was more serious. I was in denial and it actually took 3 additional confirming diagnoses to accept it. Even then, it took another 6 months before the gap between her and typically developing peers widened to the point where the general pediatrician agreed.

 

I vote for seeing the developmental pediatrician and possibly other specialists like a private SLP and private OT. It may not be autism but you need someone who specializes in developmental issues to rule that out, not the general pediatrician.

[Pintosrock]

Alright, you all have convinced me. I really should have known where this was headed when the pediatrician asked us to come back in 4 months, instead of 12 mo for the standard "well child" visit.

 

Her concerns:

 

Physical- cannot go up/down stairs "properly," cannot ride a bike

 

Cognitive- completely does not understand numbers/letters. Only in the last two weeks has she (mostly) gotten colors. Cannot say her age or understand gender (she's a girl, everybody is a girl)

 

Speech- qualified out of therapy in Dec, after 1.5 years. Her speech, which was virtually nonexistent, has made tremendous improvement, but I know it's not on the level of her agemates. She can discuss something (ex: a book) that is in front of her, but will not have abstract conversations (what should we have for lunch or tell Papa what we did today)

 

I only said it's not autism, as the doctor's office always does a screen for the obvious signs - interaction, eye contact, etc, which never raise any flags for dd.

 

So now, I suppose my only question is whether to do the evaluation sooner or wait until dd is school aged. I'll certainly ping our pediatrician and preschool teachers here, but any general thoughts? Currently, dd does not handle new situations well, as the teachers can certainly attest to! (But I thought that was just preschooler ornery-ness!)

[Pawz4me]

There's a lot more to an autism diagnosis (or not) than eye contact or interaction. My DS is 18 now and was just diagnosed last year (ASD-1). When he was a child I was repeatedly told by professionals that he couldn't be on the spectrum because he made eye contact and was "too social." But I always knew that he was. Very high functioning--yes. But definitely on the spectrum. That was confirmed last year.

 

Not to be a downer, but from your description of the things your DD struggles with I'd want an evaluation now.

[Crimson Wife]

From your description, I would want evals by the developmental pediatrician and a private SLP at minimum. If you have a long wait to see the developmental pediatrician, I would go ahead and schedule OT and PT evals while you're waiting.

[PuddleJumper1]

Totally agree with all the above. No point in restating what these ladies have already said :) I'd pursue an evaluation now. I can't imagine your Ped. wouldn't have requested an earlier appointment and suggested a Dev. Ped. without some amount of concern. The benefits of early intervention are huge. My feeling is - the early you work on any areas of struggle the better. From a practical standpoint, having a diagnosis may open up insurance coverage for things you might not qualify for otherwise. 

 

Most of all  :grouphug:  :grouphug:. 

Edited April 18, 2017 by PuddleJumper1

[kbutton]

:grouphug:  :grouphug:  :grouphug:

 

Agreeing that you want to move on this with evaluations, and I would get moving asap. Even if you are planning to homeschool, you'll need to get to the bottom of this. 

[nature girl]

:grouphug: Yes, from all you've said I think you're making the right choice. It may take awhile to get in to a developmental ped for a thorough evaluation (around here we had 18 month waiting lists! I was lucky to find a neurologist within 3.) But the issues you're seeing sound wide-ranging enough to warrant pushing for evaluation as soon as you can, and so I'd get on that list, and if it will be a long wait you might consider finding a psychiatrist who specializes in neurodevelopmental issues, since they sometimes have shorter waits.

 

More hugs...You're starting this process at the right time, and will be able to make a profound difference by being proactive now.

[Pegs]

FWIW, we went in with (to my mind) mild issues and came out with a diagnosis of ASD-1 (borderline 2).

 

I'd been blown off by a family doctor and a paed, then a second paed sent us to a developmental paed plus clinical psychologist for a full eval including ADOS. This whole thing happened over the course of several years. I don't regret holding back, and don't feel that DS has been disadvantaged by the wait, I share this to illustrate that just because mild issues can be managed, doesn't mean there isn't something going on. It's been a revelation to me that DS' support needs are as high as they are - I was just parenting the kid in front of me for all these years, yk?

[HTRMom]

FWIW, we went in with (to my mind) mild issues and came out with a diagnosis of ASD-1 (borderline 2).

 

I'd been blown off by a family doctor and a paed, then a second paed sent us to a developmental paed plus clinical psychologist for a full eval including ADOS. This whole thing happened over the course of several years. I don't regret holding back, and don't feel that DS has been disadvantaged by the wait, I share this to illustrate that just because mild issues can be managed, doesn't mean there isn't something going on. It's been a revelation to me that DS' support needs are as high as they are - I was just parenting the kid in front of me for all these years, yk?

Would you be willing to share some of the mild issues that made you decide to go in?

[Storygirl]

It might be worth talking to the school again. Have they had a speech therapist test her pragmatic language skills or run any general language testing? Or was her speech therapy just for articulation?

 

Some of the things you mention should be covered under speech, because speech therapists work with language skills over all. If the school only tested her articulation, they may be missing some other areas where she could qualify for school services.

 

I agree with what the other posters have said, as well. If your pediatrician is suggesting the evaluations, I'd move forward. Did she actually give you a referral to the developmental pediatrician yet, or is the appointment in four months when you will get the referral? Around here, it can take 9 to 10 months on a waiting list to see the developmental pediatrician, so I'd go ahead and ask for the referral now, unless you have shorter waits in your area.

Edited April 18, 2017 by Storygirl

[PeterPan]

Alright, you all have convinced me. I really should have known where this was headed when the pediatrician asked us to come back in 4 months, instead of 12 mo for the standard "well child" visit.

 

Her concerns:

 

Physical- cannot go up/down stairs "properly," cannot ride a bike

 

Cognitive- completely does not understand numbers/letters. Only in the last two weeks has she (mostly) gotten colors. Cannot say her age or understand gender (she's a girl, everybody is a girl)

 

Speech- qualified out of therapy in Dec, after 1.5 years. Her speech, which was virtually nonexistent, has made tremendous improvement, but I know it's not on the level of her agemates. She can discuss something (ex: a book) that is in front of her, but will not have abstract conversations (what should we have for lunch or tell Papa what we did today)

 

I only said it's not autism, as the doctor's office always does a screen for the obvious signs - interaction, eye contact, etc, which never raise any flags for dd.

 

So now, I suppose my only question is whether to do the evaluation sooner or wait until dd is school aged. I'll certainly ping our pediatrician and preschool teachers here, but any general thoughts? Currently, dd does not handle new situations well, as the teachers can certainly attest to! (But I thought that was just preschooler ornery-ness!)

 

Please tell us you're not waiting 4 months with that list, because that's astonishing. That's not mild and not nothing. Please get evals. Now. Not later. ASAP. Every day without them is a day wasted when you could have been getting intervention. 

[PeterPan]

You have the legal right to dispute the results of the ps IEP. It sounds like you need to get a disability attorney and get firing. That list is ASTONISHING. I mean, I'm just sitting here flabbergasted.

[Guest]

It's sometimes difficult to accept that our kids may be struggling :grouphug:

 

Agreeing on getting the evals as soon as possible. Even just knowing can make a huge difference in how you approach and teach your child, not to mention the doors it can open for interventions!

[Lecka]

I think she is happy at home now as you describe her, but I also think it would be nice for her to be able to say what she wants for lunch.

 

If she needs speech therapy (my son learned this in ABA therapy but it could have been speech therapy) to learn this, I think it is worth doing.

 

It is an everyday kind of thing and I think it will be nice for your daughter, and then nice for you, too, just for this one skill.

 

I don't think it would necessarily make anyone happier, but still it would be nice, and it would come up a lot and hopefully seem like "this is a real positive skill that we got as a result of therapy as a result of taking the referral from the pediatrician."

 

I think those daily things that are just nice are the things that make therapy seem like a positive thing.

[suenos]

Hi Pintosrock.  How old is your dd?  Pre-school, so 5?  

 

Agree with everyone else - developmental pediatrician - get on that waiting list now, not 4 months from now. I doubt you need your regular pediatrician to make the referral - you could probably just call yourself. If you think it might help you get in sooner, you can call your regular ped and ask them to send a referral -  he/she shouldn't have to see your dd again to do that. 

 

Also agree with others that regardless of what the school says, you have reason to believe your dd needs continued speech/language therapy.  So - start the process for requesting continued services there.  Don't know about the insurance/finance situation, but you might also consider a private speech/OT eval.  Might be nice to have a second opinion if you can swing it. 

 

But mainly I just wanted to send you vibes of positive encouragement. You are doing the right thing.  You are asking the questions, starting with the first steps. It is just becoming clearer that there's more going on...so now you are taking the next steps.  Lots of kids are on different developmental trajectories and it's totally appropriate to start with the small things and do some patient waiting and seeing.   The older kids get, the bigger the gaps get and the clearer it is that its more than just a different pace of development with some of the slow talkers/walkers/readers. So there's nothing wrong with what you have/have not done so far.  

 

One last comment since you plan on homeschooling - I think homeschooling can be awesome for kiddos/parents of kiddos with special needs! We can choose what to work on, what to make a thing, what not to care about or to let come along in it's own good time - way more flexibility to love our kids where they are than the drumbeat of standards in schools. But especially if it's your oldest/only  it can be easy to not notice or ignore issues because no one outside is pointing out/comparing them with a classroom full of neurotypical kids. So evals are not a bad idea at all. 

 

 

 

 

 

 

 

[Janeway]

Things that are mild at 4 and 5 yrs old can get bigger later on.

 

I am not a big proponent of intervention or evaluations. I think every child, regardless of labels, needs to be treated as an individual. If you do not want an eval, then don't get one. In some states, once your child has a label, you have to get extra special permission to home school. That does not happen in most states, but I think I heard of it happening in PA and NY and I do not know about any place else. Plus, another thing is, at 4 and 5 yrs old, issues are not as apparent. It can easily be inaccurate.

[nature girl]

Things that are mild at 4 and 5 yrs old can get bigger later on.

 

I am not a big proponent of intervention or evaluations. I think every child, regardless of labels, needs to be treated as an individual. If you do not want an eval, then don't get one. In some states, once your child has a label, you have to get extra special permission to home school. That does not happen in most states, but I think I heard of it happening in PA and NY and I do not know about any place else. Plus, another thing is, at 4 and 5 yrs old, issues are not as apparent. It can easily be inaccurate.

 

 

I respectfully disagree. For issues such as ASD, the sooner they are diagnosed, and the sooner suitable interventions are implemented, the more impact the interventions can have. (Of course the children are treated as individuals...A label doesn't change that at all, just helps professionals figure out which interventions might be the most effective.) The label really can only help, with funding for treatment, understanding and accommodations. Clamping hands over our ears and shouting LALALALA will not make our kids' issues disappear. 

[Guest]

Things that are mild at 4 and 5 yrs old can get bigger later on.

 

I am not a big proponent of intervention or evaluations. I think every child, regardless of labels, needs to be treated as an individual. If you do not want an eval, then don't get one. In some states, once your child has a label, you have to get extra special permission to home school. That does not happen in most states, but I think I heard of it happening in PA and NY and I do not know about any place else. Plus, another thing is, at 4 and 5 yrs old, issues are not as apparent. It can easily be inaccurate.

Pediatricians will tend to be dismissive or at least try to put a parent's mind at ease when they feel that the parent's concerns are not warranted. In this case, it is the op's pediatrician urging her to get further evaluations. I wouldn't take that lightly! I wish we had a doctor that cared enough to do that back when I was struggling to figure things out on my own!

[boscopup]

I had suspicions of things going on with my son when he was 3. The school supposedly checked him for autism at age 4 and deemed him "not autistic", but that was based on a CARS questionnaire filled out by me... That's it. It was not a valid evaluation. And at that time, it was kind of hard to tell if he was just needing extra time to catch up or if he was different from other kids. But as he grew older, it became more and more apparent that there was something going on. Autism was still a thought, but I thought he was too social and he made eye contact. What I didn't realize then was that he does not interact in a normal manner socially, even though he is social... He likes other people and will even go up to a strange kid to play. But he doesn't converse the same way as other kids. And when you're​ talking to him, he will make eye contact for a short time, but then he'll look away and look all around the room. He just got an ASD diagnosis at age 10, and the psychologist said he basically had a huge list of autism symptoms. He's high functioning, but a lot came out of testing that I didn't realize was a problem and/or was autism related. For example, he can't read facial emotions when they're kind of subtle. That's something I didn't know he couldn't do. Also, I was colored by my experience with my more severely autistic nephew. My son was so much more social and just plain normal acting compared to him, so it made me suspect autism less. But by 10, the gap between him and peers was widening and I started to suspect it more. Sure enough...

 

And this isn't to say your child has autism. I'm just saying that finding out what is going on is helpful and you can get appropriate interventions earlier rather than later. It's hard to solve a problem when you don't know what the problem is. I wish I'd gone to a psychologist when he was younger. The school autism screening was a joke.

 

And the fact that your child's doctor heard your concerns and thought them worrisome enough to get them checked out speaks volumes. I told my doctor the issues we were having recently, and she suggested getting an autism screening. The psychologist tested for a whole bunch of things, so we were able to rule out some suspected labels as well. For example, he does not have dyslexia or ADHD. His slow learning to read was probably due to the low working memory and low processing speed that I didn't know were issues for him (and again, I suspected some of that, but then he always threw me by doing things like memorizing math facts with no issue whatsoever). And that low processing speed has caused a behavioral issue more recently, which is what spurred us to get him evaluated. Now we know how to help him. He can also get school services because of his diagnosis, and he can get testing accommodations based on individual weaknesses found in testing.

[4KookieKids]

One thought I have on this is that I didn't realize exactly HOW different my oldest was for a long time. He was my first, everything was new and different, and I was just learning as I went along. We noticed a few things that didn't seem "normal", but he was bright, friendly, curious, and a great kid, so we didn't really start pursuing things until others suggested it gently. By the time we really got the ball rolling for him, though, he was having significant struggles. Now that I have three other kids, I do see how different he was. But I think your judgement can be really far off when you have no real comparison and things you think might be mild may not really be mild.

Edited June 14, 2017 by 4kookiekids

[Crimson Wife]

  For example, he can't read facial emotions when they're kind of subtle. That's something I didn't know he couldn't do. 

 

My child with HFA has difficulty distinguishing between emotions where the facial expressions are ambiguous and one needs to understand the social context. Things like "surprised" vs. "scared", "angry" vs. "jealous", and "embarrassed" vs. "shy".

 

Reminds me how my DH has difficulty recognizing when women are flirting with him. I don't think he's deliberately lying about it but rather that he is honestly clueless.