Whether or not to have a child medically reevaluated

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My son will be 5 next month. Identified with speech delays at 18 months, general developmental delays and began receiving county early intervention services at 2, identified with sensory processing disorder at 2.5 and began recieving OT and was initially evaluated by the school district and received an IEP at 3. He's been in preschool with an IEP since 3 and we just had his IEP meeting last week. The initial IEP was for social and emotional delays, adaptive delays and gross motor delays. There were also concerns about his pragmatic language delays. Right now he has made almost no progress on social and emotional skills and some progress with adaptive and gross motor. The school is currently assessing whether to add fine motor delays to his IEP as he is borderline on whether those skills are delays enough to qualify. He spend one year in a special ed preschool and this year he is in a general ed preschool. His cognitive abilities are far above average. He will be in a general ed preschool this fall but his IEP team says he is not ready but there really is not another placement option.

Our experience with doctors has not been good. The developmental pediatrician has been saying "don't worry he'll grow out of it" since 2. School district is convinced that my son is autistic or has some other related disorder and while it would make sense I don't think we'll ever get any type of diagnosis.

A year ago they sent us back to the developmental pediatrician who told us we needed a psychologist after he had us, my son's daycare and the school district fill out rating scales. All three indicated mild (level 1) to moderate (level 2) autism likely. Developmental pediatrician did again tell us the school was worrying for nothing and our son was just going to catch up and we didn't need a diagnosis.

In July, We found a psychologist at an autism clinic who did a 1 hour parent interview and then took 2 hours to do the ADOS. She gave us the vague diagnosis of unspecified neurodevelopmental disorder and unspecified conduct disorder and said she didn't feel he had anything wrong and "all 4 years olds struggle to make friends, memorize tv shows and use scripted speech, stim with their hands, lack eye contact, become obsessed with numbers and favorite topics and he's perfectly normal and I don't even know why he has an IEP. Try parenting classes and set up more playdates. He's going to catch up on his delays. Just keep working with him but there really isn't a diagnosis there." She then had a speech therapist spend an hour with him and she said he had a pragmatic language impairment.

My husband and I just accepted that and decided we were done with doctors. It was very emotionally draining and I felt like we were being blamed even though we have done everything we can to help with his delays.

My son went to school and we kept taking him to private OT every other week. Kept dealing with the meltdowns and OCD like behavior and the anxiety as always. Just trying to help him as much as we could. We both started to feel like if he didn't have a diagnosis maybe we just needed to be firmer on discipline and put him in time out more. Which really didn't help. We both read parenting books like crazy on the chance that maybe this really was all our fault.

At his IEP meeting last week, his IEP team has suggested we have him evaluated again for autism. They feel doctors telling us he will catch up at this point is a cop out. I am just torn right now. If the ADOS is the "gold standard" and he didn't get a diagnosis the first time I don't know that a second time will do anything. I've had other people suggest dyspraxia, ADHD and social communication disorder. I just don't want to hear "don't worry he'll catch up again." Not when we've had an IEP for two years showing a lack of catching up. My son is starting to wonder why he is different and asking why the kids at school can do things he can't.

I think it's worth a second opinion. Can you take him to a different psychologist than the first one?

I think the ADOS is considered the gold standard, but it's supposed to be done with other tests as well.

Also, sometimes kids seem to be developing at a somewhat normal rate, but as they get older things become more clear. We did not realize that my son had a pragmatic speech delay until Kindergarten, and we also (although knew he had delays) did not understand the extent of his social issues until Kindergarten, because the other kids had moved past parallel play and understood social cues at that age- but he had failed to progress in this area.

Do it, try not to sound bitter, and try to just show a little of the frustration you feel over the way the school is providing "new" information and how disappointing it is your child has not caught up as predicted. It allows them to save face while taking another look.

The school, however, should be able to implement supports with but also without a diagnosis.

I agree with this. If the school does not do the diagnosis, but suspects it, and know that your child needs help, they ought to give it to you without making you go through private pay hoops.

if you want a medical diagnosis for other reasons, like to get things paid by your insurance, you may need to continue to pursue that. In the meantime the school ought to cut you slack, especially since they are the ones stressing that your son should be diagnosed.

The ADOS has different modules for different ages. My son did not score in the autism range when he was tested with module 1 at 31 months, but when he was tested again (by a different person) with module 2 at age 5 he received a diagnosis.

Do you think the school would change the IEP in any way if the dx were "official"?

If you have the resources, you could get a second opinion.
If the second opinion is also negative for autism, then it is best to not pursue autism diagnosis beyond that.