Getting nervous about developmental evaluation!

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My sons developmental evaluation is FINALLY coming up on Thursday. We've been on a waiting list since August, but I really cannot complain because the wait in our area is typically around one year. He's 19 months old.

He's been in early intervention for 5 or so months at this point. During this time I've seen him progress and regress. He's currently in the middle of a progression spike, but I think I'm already witnessing some regression from that. Being that his abilities are so inconsistent, I feel like I'm going to have a difficult time answering a lot of their questions. For example, a few weeks ago, he repeated the word "up" two times for me, and he never said it again. This happened with "mama" for several months, and the word eventually returned. But it also happened with "more bubble", and neither of those words have returned. Or another example - I just wrote on my list of "red flag behaviors" last night that he does not engage in pretend play. Then today, while his teacher was testing him for his EI progress report, he picked up a tea cup and pretended to sip it, and he even made sipping noises like he's done it a million times! I just don't know how I'm going to answer any of their questions accurately.

Also, we've been learning ways to manage his moods and behavior problems lately. Since implementing these techniques, a lot of his "red flag" behaviors are no longer presenting in the same way that they would otherwise be if we were not managing them so well. This concerns me as well because I feel like the people who are observing him will not see an accurate example of who he is.

Then there are the "red flags" that he does not present with. He has great eye contact, he is now engaging in pretend play, he does not line things up, and he is fairly social (with adults, not children). His teacher said that he's doing well in the social-emotional aspects.

I'm just so nervous about this evaluation! We've waited so long, and he has so many autism "red flags" that I cannot even fathom them not diagnosing him. But what if they don't? I'm going to lose my mind if they don't after all that I've witnessed from him! And of course, he needs the diagnosis in order to receive the services that I know he needs. I really need help with him, and I'm not getting enough from early intervention (not to say that they aren't doing a fantastic job).

His "red flags" are: head banging, slapping himself, rocking on occasion, repetitive opening and closing of doors/drawers (absolutely obsessive and non stop), repetitive string snapping, repetitive spinning and flipping of objects, repetitive walking back and forth, spinning in circles, frequently ignores name, disliked being held as infant, dairy intolerance, ignores other children, lack of separation or stranger anxiety, hand flapping, toe walking, grunting and growling, pulling his own hair, pushing and pulling eyes and ears, texture sensitivities, developmental delays, speech delay, loss of language, poor receptive language (still does not associate mama or dada), awkward gait (walks with head to shoulder, runs looking upward), clumsy (walks into walls), only communicates through picture exchange and one sign, hyper sensitive to motion, delayed babbling, delayed pointing/waving, does not point to make requests, unusual finger movements, intense and frequent tantrums, stares into space, does not play functionally, soothed with objects as infant, preoccupation with parts of objects (screws, battery cages, etc.), genetics (I'm diagnosed with Asperger's)

I really hope I'm not over reacting here. Does anyone have any thoughts? I'm so worried for my child, and my family for that matter. Not having clear answers is very emotionally draining for all of us. Thanks everyone.

This probably won't help, but if the eval is Thursday, I would just try to relax. Maybe make sure you have your thoughts all written down first, in preparation, and then just relax. The eval results won't change who your baby is. You will just see what kind of help (if any) is needed. Honestly, I never look at the period of time before our son's first real eval and think that I should have worried more.

The worrying did not help anything.

Definitely agree on the try not to be too positive. It is hard. As parents we want to brag about every little accomplishment that our kids achieve, and downplay anything that might be "off". I believe that this probably hindered my kid's early diagnosis. He was one that would randomly say or do things that were great and then never or only much later repeat them. Like he said "tractor" clear as a bell when he was 13 months or so old. Definitely less than 15 months, because I was on the way home from a prenatal appointment and he was 15 months when his brother was born. He did a lot of things like that, and he socialized very well with adults and never, ever had an issue with separating (what I realize now is that total and complete lack of separation anxiety was ITSELF a problem), and he has always had at least occasional eye contact. You're way ahead of me as a parent advocate for your kid. When my kid was a toddler, I had never even heard of Asperger's, and thought autism was only the extremely low functioning people who never did anything their whole lives but rock in a corner. See? I was so far from knowledgeable about the subject that it isn't remotely funny. I know that I bragged on whatever he had ever done at early interviews, and I know that it hurt his diagnosis.

I didn't not tell them the things that he did, but I didn't emphasize them enough. I was too focused on whatever ray of sunshine there was. (At the time of original evaluations, the OTs and other therapists were not at all positive towards his future. I believe the original assessment was that he would likely require fully self sustained classes after Kindergarten age. He fooled them all.) This is one of those, "If I could go back and do it over..." things for me.

Definitely write out that list of symptoms. Don't let them rush you. Don't let them get away with praising things that are actually symptoms, such as the total lack of separation anxiety with my kid. That was praised over and over. "Child separated easily from mother..." They never asked to what extreme he did this, although, you'd think that a small child having no concern whatsoever about leaving with a stranger in a strange place when the mother was obviously nervous should be concerning to them. Describe all the red flags. Describe the things that he does that are odd developmentally, like the progressing followed by regressing. The sudden spurts of development, like suddenly picking up the tea cup.

As an aside, has he continued with the tea cup? Has he spread to other areas of imaginative play? Is he repeating the exact same actions with the teacup each time if he has continued? Sometimes I've seen like a physical echolalia, not sure of the proper term, where the kid is just copying. I wouldn't call that imaginative play unless the kid could expand/adapt the scenario.

You didn't mention any sensory issues, except to motion, but make a list of each of them if they are there.

Basically, stand your ground and make sure that what they are hearing is what you actually said, and not something else.

And listen to the other posters about relaxing, even though my post is probably not very relaxing. View my post through the lens of someone who has had bad experiences with evaluators, and probably not the typical quality of evaluators available today. A lot has changed in the last ten years, and the last people we saw have been nothing but excellent, saw some symptoms even better than I could (reciprocal conversation. I didn't see it, because I have yet to really master it myself), and the entire clinic was set up to put parents and kids at ease. I doubt that had these people saw my son at age three that he would have been misdiagnosed at age three.

If they are testing with the ADOS, a good portion of the evaluation will be structured play tasks that are very good at bringing out symptoms. So even if you don't convey everything ideally, it is very likely the evaluator will see the behaviors for himself or herself.

Use words like "intermittent", "sporadic", "inconsistent", "scattered" and so on to describe his skills. That would most accurately describe them from what you are saying. It sounds like those things should not detract from the primary concerns you have. Most of the services (whether increased or staying the same) are going to be based upon the evaluations and the reports of the current therapists working with your child. I'm pretty sure that If you have any concerns, ask the therapists working with him what they think. They can also give you the right wording to use to represent your child in the most helpful way possible. You might be surprised, because even though you see your son making such great strides, he may still be VERY behind where he should be for his age, and although you see progress, he still may not be at the age appropriate level and will still need much therapy to get there. I often think my son is advanced for his age until I compare him side by side to an NT child of the same age, and then I think, "Whoops!" LOL Good luck!

If he JUST learned to sip tea form a pretend cup, I would say that. He hasnt in the past but one new skill is that he is able to now....

You should answer to how he behaves and what he is able to do MOST of the time. if he did X,Y and Z once, but not anymore, or does it infrequently, then go with that answer.

I agree with PPs, you need to come with your list of issues and worries, not your list of what he can do. they dont diagnose or give services based on strengths, rather the wekanesses.

It can be so hard to view your child in a negative light, but know its for the best.

good luck!

Thank you so so much for all of this incredible advice!! I am writing out my list of concerns and grouping them by category to the best of my ability. I'm also trying to adjust my focus to zero in on the negatives. I think that I do try to compensate for his issues by overemphasizing his strengths. I also think that I have a tendency to believe that I'm simply imagining "red flags" when in reality I'm sure they are probably actually there. Writing this post and hearing feedback from all of you is helping me to clarify my thinking so much though!

Interestingly, when I met with his teacher yesterday, she had a very positive outlook. She really does have a tendency to emphasize his strengths, so I walked away from that feeling afraid that he would not be diagnosed, or that he would be diagnosed with something less than I feel he should qualify for. Then today, I met with his OT, who is the complete opposite. She has a tendency to be very frank with me (which I SO appreciate) and just say it like it is. She gave me a list of sensory issues to write down to bring with me, and she even mentioned the possibility of him being diagnosed with apraxia. So now today I'm worried about him being diagnosed with more than I was mentally prepared for!

I'm not sure that there will be much rest for me before his appointment, but I am trying to relax!

Thanks again, everyone!! ! I will keep you posted and let you know how it goes.

Well, the evaluation happened, and the outcome was pretty disappointing. My son is 19 months old, but they said that developmentally, he is around the level of a 10 or a 12 month old. Being that he is so delayed, and he is so young on top of that, they were unable to give him a diagnosis. I was afraid that this could happen, but I didn't expect him to be so delayed, so I didn't think that it actually would. They said that it was very difficult to test him, and that although he is clearly displaying features of autism, there is nothing objectively diagnostic yet. Although his language skills are poor and delayed, they said that it is also too early to know if he has apraxia or dyspraxia, but that they have not ruled it out. They said that autism is pretty much the only thing that could be causing his repetitive behaviors but that *some* children who have sensory issues without autism display them as well. They also said that a diagnosis of PDD could be in his future, depending on how he develops.

The official outcome was called "mixed developmental delay with aspects of autism".

They have recommended a *slight* increase in his therapy hours (he's only getting 1.5 hours per week right now!! !), adding physical therapy (so he'll have a PT, OT, ST and a teacher) and center based services (we were already trying to get him into a school).

So basically nothing has changed, he's still going to be grossly lacking in services, and we're going to have to wait at least a year before they will want to reevaluate him. The stress of waiting the 8 months for this appointment to arrive was almost more than I could take, I don't know how we're supposed to wait around for another year!! !

hmm not liking that at all. Can you take him to a developmental Pedi? If you get an indapendant eval and they diagnose him, they will HAVE to give more services. I know of kids in EI that got a teacher every day for an hour to 2 hours. Sounds like he is significantly delayed and they arent giving him nearly enough services.

Where do you live?

I would be livid. That is ridiculous, that they can't diagnose autism at that age. My son was 19 mos old at time of his evaluation and was dx'ed with mild PDD. My other son was dx'ed at 20 mos with PDD. I would research into getting a formal hearing and getting a reevaluation. I don't think that woman knows what she's talking about.

Also, you should tell them that since you were dx'ed with Asperger's that there is a higher chance that your son is on the spectrum. Go back and fight for your child! I know in NY you can demand a hearing to dispute the findings and get another evaluation done. Know your rights!! !

also, do you know if she was a psychologist? If not call them and request a psychological. When my niece was little like that, she was in EI, and they tested her, she had speech delays, etc...it wasnt until the PSYCHOLOGIST tested her that he diagnosed the PDD-NOS. She was close to 2yo. at the time.

When my son did his evaluation at 3, I painted him in a very bleak light. Lucky for us, we had one test with the psy, ST and social worker and then tests with the OT, and PT later on. It took a few months until the finally meeting but during that time, no one else saw my son. By the time we showed up at the meeting to sign the IEP, my DH and I had made our son seem so bad, they gave us the max and even threw in Play Therapy (which I didn't think we were going to get).

I also stressed that my son regressed since his last evaluation. The administrator made changes on the spot which gave more services than she planned to give my son when she walked into that meeting. I am happy we did that because the max is not enough in my opinion. My son wasn't diagnose with ASD but I think he has so much symptoms (though they are mild) that maybe a different neurologist would diagnose him. I would have preferred that he get 5 days a week of ST, but instead they only gave him 2 which is standard in my district (some districts get 3xweek as standard). We have to put him in ST on Saturdays to give him some extra practice.