4 yrs too early for asperger dx? school seems to think so

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im feeling a lot of frustration with the school system right now. we requested a mental health evaluation from our sons school last november and it fell through the cracks until we pressed them about it this past march. due to our frustration with the delay, we set up an independent eval through a local psych clinic. they assessed him for speech and then we had our first iep planning mtg. he qualified for speech services but because we had already scheduled an independent asd screening, they chose not to do their own asd screening and just wait for the report from the outside psych.

we did the outside screening and he was given a diagnosis of asperger's. this screening was very limited and was mostly done by parental questionnaires, however i think its accurate. today we had his final iep mtg. i gave them the report with the diagnosis of asperger's. the school psych and social worker both seem to agree that 4 is too young for an asperger's diagnosis. i fail to understand this thinking, if the main difference between hfa and as is language development, you would know by 4 whether language is significantly delayed or not, thus you should be able to differentiate between hfa and as.

i am highly annoyed that the school chose not to do the asd screening, and yet wants to say he doesnt have autism, despite the fact that they didnt screen him. the school psych did two observations in his classroom and thats it, yet said that he shows some signs of autism and some not, they consider him borderline and therefore they dont want to "label him" and wont give him an autism diagnosis. they seem to think that in a few more years, around 2nd grade or so, would be more accurate to do the screening then.

right now, based on his speech difficulties, he will still be able to get the other services like OT which they will begin in the fall with the new school year. so according to them, its better to not label him now since he can still get services.

my main concerns are these:
what happens when he conquers his articulation issues and no longer qualifies for speech? then he will lose all services.

what happens in 3 yrs when they would want to evaluate him? he is making good gains in some areas, has "outgrown" some of the typical autistic traits already. if he no longer has enough traits to allow the diagnosis then, will he not get any services at all?

this has all been so frustrating. he has made such great leaps in certain areas, even his head start teachers have commented on how much improvement hes had in his talking and expressive language. and yet other areas are becoming increasingly difficult, potty training is completely off the table, he is expressing more frustration with other children, he is exhibiting more sensory seeking behaviors, has a lot more sleep issues...

*sigh* i guess i just need somewhere to sound off about all this. im finding my area has little to no support or services for autism, and the school is one of the only places for that sort of thing. and yet they refuse to take off their blinders and see what is so obvious to his parents.

In addition to my neurological atypicality, I am a school psych, and I work in the clinical setting too. So while this is not formal advice/therapy, and so on, here are some suggestions that I hope you find helpful


1) Schools have an obligation to address behaviors, traits, or weaknesses that have a negative effect on the child's ability to learn. This obligation is not tied to any specific type of eligibility. If you have good evidence (i.e., actual data) that there is some aspect of your child's functioning that negatively affects his learning, focus on that, and ask how it will be addressed. If the child has a diagnosed condition that does not require direct instruction, but might require reasonable accommodations or modifications like extra time or cueing from a teacher, he or she may not need an IEP, but would be eligible for a 504 plan under the American's with Disabilities Act.

2) Just because he was not found eligible due to Autism at this point, does not mean that it might not occur in the future, but hopefully, with remediation, coaching, therapy, and so on, he may never need that label, as he might not need services. This of course varies depending on how affected each child is. The goal of any good therapeutic program or intervention is to increase functioning to the point where the person is independent at an age- and situation-appropriate level.

So in summary, bring specific concerns to the attention of the school and ask how they are being addressed. Do not worry so much about labels, and good luck. Special Ed. can be one heckuva pain in the rear!

I know how confusing and frustrating it can be dealing with the school system. My little guy did not meet the school's autism requirements either but at 3 they did not seem to think it was too early. The thing they kept telling me was that the school's criteria are different from a doctor's criteria. The school's criteria will depend on how well he can function and learn in the school environment (and also, money, resources, etc) while the doctor looks at optimal functionality across the board.

Bottom line is, as long as he's getting the resources he needs it doesn't matter what the school calls it. Just make sure that he continues to get those services and if you can use your own therapists as well.

Best,

My son is almost 5. We took him to a developmental pediatrician at age 2.5 and he received a diagnosis of PDD-NOS/possible Asperger's. He started into the school system at age 3 and received services under the label of Significant Developmental Delay. He has been going to special needs pre-k for 2 years. In order to determine what type of kindergarten program to place him in, the school did want to do their own psychological testing on him. They did several different tests and one of them was an assessment of his social/emotional and behavioral functioning. This consisted of questionnaires filled out by myself and his teacher. From his teacher's questionnaire, the probability of autism was very likely. From mine it was possible. I think my son has a harder time performing under stress than he does at home. Anyway, the did a social responsiveness scale, and from that they said his behaviors were indicative of HFA or Asperger's. So I think 4 is not too young to determine this. The bottom line is, just because your son's speech is improving does not mean that there are not many more issues to deal with. I would think if he has a diagnosis from a doctor of AS, that they would have to keep giving him services. I would just stay on top of it. I don't think the schools can officially diagnose, but they do have to work with whatever issues are presenting. In some ways, I wish my son did not have all of these labels on him, but we had to to get the services.

I'm not really sure what it is that is making the school hesitate, if you feel the signs are pretty clear at this point. I know that MY son would have been difficult to diagnose at age 4, but that is because he was so high functioning that one couldn't be sure if the differences were personality, development, or AS. By age 7, the impairment becomes more clear, because the NT kids will have advanced socially far more than the AS child is capable of, leaps and bounds regardless. By age 12 it is even more obvious, but I would hope no one waits that long to get a diagnosis!

My guess, then, is that the school is hoping he's just unique, and not going to be qualified for services later. While there is valid concern about labeling too early and attaching stigma, I'm not convinced that a school is really concerned about how that plays out from the child's perspective. It's not like they couldn't remove the label later; or is it? That I actually don't know, if they can move out of a diagnosis they have agreed to, and having that information might help understand where they are coming from.

As for your question on speech, I've found that kids can go in and out and back in with speech. The standards and expectations change each year, so graduation at age 5 doesn't mean the child cannot qualify at age 7. Or 12. And so on. But if there isn't an IEP in place for something beyond speech, the re-tests, I would assume, are not going to be automatic like they have been with my AS son.

As for what to push, now - I see two opposite approaches. Often it is good for a child to be able to enter a new environment, like Kindergarten, without any assumptions. That gives the teacher a fresh look, and the child a new start. While we had heard some rumblings that my son might have sensory issues before K, it was recommended to us not to pursue it yet, so that we would get new eyes with him. And that was helpful, in our situation. But the flip side is that if your child is going to need accommodations and services, and you know he will, they will not be in place. You don't want to take that approach if you can already see the roadblocks and negative conclusions; in that situation, you will want all the information you can get, and an IEP out of the box. It takes a long time for the wheels to churn through the process, and some kids cannot survive the wait. Which means .... only you can make that call, and it sounds like you already have: you want it all in place so that your son starts elementary school with the services and accommodations you already know he needs. I wasn't in that space when my son was 4; it was all still unclear to us and the professionals we were consulting with.

anyone who lives with or works with him on a regular basis sees it. we see it, his aunt sees it, his teachers see it. his most affected area is social, and its so profoundly affected that its immediately apparent when he is in a room with other children.

ironically, one of the behaviors the school psych witnessed and categorized as "non-autistic" was our son playing with another child by leaning against her. but if you know K, he wasnt playing. its like a stim for him, he requires a lot of physical contact/pressure. he is quite frequently next to someone and leaning against them, if not a person then its a chair or couch, he faces it and leans into/on it. he can stand like that for hours when playing his video games. its the reason he co-slept the first 3 years of his life and has done so again the past 2 months, because he needs to be pressed against someone. its not neurotypical playing, but one of his autistic sensory traits.

as an aside, i am currently making him a weighted blanket in the hopes i can get a decent nights sleep again soon

for school, he actually will be in Head Start again next year (its for 3-4 yr olds, he can go one more year). where we live in saginaw, michigan, most schools have a free pre-k program and we could move him to that, but we chose to keep him in Head Start. it will, hopefully, be in the same classroom with some of the same kids and the same lead teacher next year, and we thought that would be best for him given his social and transitional difficulties. it also has a smaller class size, and as it happens the Head Start classroom is in a school for special needs kids, so everyone in the building would be more able to handle issues that arise than would those at the mainstream school. but after next year he will be going into Kindergarten in a different building and with completely different teachers and staff, and i definitely want everything in place before that starts.