Special ed person worried about ASD label following my kid

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Just got off the phone with my kid's speech therapist. He's starting a new school, and a few weeks ago I found out that ASD's weren't on his record at all. His doctor gave us a diagnosis and a report to give to his old school, and after we gave it to his old school (a couple of years ago), it pretty much vanished into thin air.

Anyway, the speech therapist called me to talk about a few changes they were doing, and I mentioned his Asperger's. The speech therapist went over what he does have on his IEP (mainly ADHD stuff and speech problems), and told us that if autism/Asperger's ended up on there, that label would get a much different reaction when he tried to go to college or whatever.

I have no idea whether to believe this person. Hell, given that college is a good seven years away in the best case, I have no idea whether this person has any chance in hell of making that sort of prediction.

Does anyone know what sort of consequences having autism/Asperger's in your IEP has in later life? I never got a diagnosis, no one knew diddly squat about Asperger's back then, and I mostly sailed through college without incident, so I don't know what kind of an impact having that on his permanent record will have or whether it would throw monkey wrenches into the whole college thing.

Having an ASD shouldn't have to appear on his record at all.

Are you saying that if it's on his IEP, that won't follow him out of high school?

Of course given that he actually has an ASD, and that lots more people would recognize it nowadays, it's not exactly going to be a secret...

Having an ASD shouldn't have to be a secret, but most people have a stereotyped image of Dustin Hoffman as Rain Man when they hear autism.

IEP's should not be misconstrued as a "permanent record" in any way. They are merely a tool used by the state an school to determine the best way to educate the child. IEP's last up until high school graduation. Any special assistance needed at the college level must be specifically asked for with proper documentation to prove the need for it.

In short, the label won't follow him unless he wants it to.

I would ask the speech therapist to explain exactly what he meant by what he said, and ask him to give specific examples of problems autistic students have had at particular colleges.

I suppose it can depend on where you are, but as far as I'm concerned it is to the student's benefit to have a diagnosis so that they can get the accommodations they require. For example, being able to sit an exam in a room on their own if they can't stand the sounds of people around them or have sensory issues which are exacerbated by the exam room usually used. If they have difficulty with hand-writing they can use a laptop or have a scribe, and they may also be allowed extra time in an exam.

As you say, it is going to be obvious anyway, and in any case, who knows what uni or college life is going to be like in 9 years time. Even supposing he does know of individuals who have had bad experiences he should be helping them to challenge that and change things for the better, not just suggest that you son hide his diagnosis.

I've never heard of a college requesting or having access to such information. When I applied for university, they requested nothing from my primary education and of my secondary education, they only requested transcripts.

They are not allowed to request any information concerning diagnoses, disabilities, and so on. One is only required to furnish proof of such when requesting accommodations at the university or college disabled student office, AFTER one is admitted to the school.
The disabled student office rarely divulges to the instructor the condition that accommodations are being requested for, and most instructors can't be bothered with the details if you tried to tell them.

I would ask the therapist "What would happen if your child does not get the assistance they need because the schools were not informed?" Once they ask that question, ask what they meant by their comment and to provide an example. Do they shunt ASD children into special one size fits all programs where they will screw your child out of an education? If so, then be willing to force the meaning of the I in IEP.

Chronos is correct but I want to add something. What difference does it make whether your kid goes to Harvard or MIT or goes to a state school. None really unless your child is like Ari N'eumann and is interested in politics. Truth be told, you can get an excellent education at a state school. Also, most community colleges have an undeserved reputation. If the private colleges accept the credits for transfer, then the programs are as rigorous as the programs those private colleges offer because at the end of the day, those private colleges are putting their stamp of approval on your child's education. Not only that but you as the parent will save a ton of money in the process.

I say if your child or those who work with your child need the ASD designation put in the IEP. If the school tries to offer your child a less challenging program and you know your child can do more, resist with everything you got. Let the college piece fall where it may. Take it from someone whose special education records were hidden from his high school teachers, it is better that the teachers know what they are dealing with.

That speech therapist is an idot. Having autism/AS dosen't effect ones ability to go to college. I guess the dude never heard of Temple Grandin.

I was done a tremendous disservice by people who were "worried about labeling" me. Long story short, I did not get the services and accommodations I needed and couldn't stay in public school. Label a child right away if it means they'll get the help they need to succeed.

I don't know what it is like in the States, but here (Canada)--as long as you have the grades--universities cannot discriminate against any disability. My school has been quite helpful, and they are very aware I have autism. I might be the only person with classic autism in my school, but I know there are definitely others there with Aspergers as well, maybe autism too. Someone I know who also has classic autism recently graduated from another university in my city--and he has been diagnosed since childhood. He had no problems going there, as far as I know.

Also, just a note: if the label is NOT given for his IEP, then he may not get all the help he needs since they will not be basing his program around an ASD.

We asked just that question, before letting the label get put in our son's file and accepting services and accommodations, and were told that there are actually people out there with kids who are not ASD, but want an ASD label, so their kids can get more time on the SAT's et al. Basically, as far as college goes, this should be a non-issue. Of course, if there are odd schools out there operating in the dark ages and that are afraid of the label, I can't be sure. But many many AS kids go to college and with their AS fully known.

More interesting is what might happen with the label being in the medical file, and that is already a done deal in your case. Hopefully it is never a negative, since it should be a protected disability, but I do know of someone who felt it was used against them in a child custody case.

School records die when the child leaves school.

Medical records follow an entire life.

Or, at least, that is how I've come to understand it.

End result: you do what you have to to get your child what they need and you don't worry about what a few notes in a few files say because if you start to do that, you'll go nuts. IMHO.

I'm kind of thinking the same thing as y'all.

One other point... other parents tell me that schools around here tend to look for reasons not to apply the label or provide services, since it means more work for them. I guess giving me a guilt trip about ruining my son's life with a label certainly counts as a way to avoid having to give services. I don't know that's what's going on, but it certainly fits.

Of course the parents have their own agenda, trying to get expensive services for their kids through their schools. So I can't just take what they say on faith either.

Dammit, this is hard...

Well, I don't know how LD/ADHD gets treated at university level, but I'm diagnosed with PDD NOS and at the university I've gone too, the university handled my disability reasonably well. (Judging from what my friends say, it's not that much worse than how they treat physical disabilities like CP.) No one suggested that I didn't belong in university because I'm autistic, nor did they suggest that I was too 'high functioning' for accomodations. Their system wasn't very cognitively accessible and we had some miscommunications, but by and large they tried to meet my needs as best they could. At my new university, from what I've seen, it's looking to be pretty much the same. It's not like being labeled autistic has really slowed down my university career - if anything it's helped it since I got some much-needed accomodations (though ADHD or LD students would be eligible for those too).

I suppose it's possible that it's different in US, but if so, you could always send him up to Canada for university.

Um, yeah, you're going to be saying that A LOT trying to make decisions for your AS child. Very little at this point in time has an obvious "best" answer and, even when it seems there is one, there is no guaranteeing it is right for your unique child. All I can say is that when you've made really good decisions, you will usually know it, and when you've blown it completely, you'll usually know that, too. Everything in the middle, which is of course most of it ... you just keep going on a wing and a prayer and hope it all works out.

FYI, there are some school districts that will do anything and everything to keep from having to issue an IEP, but more often I think you just have professionals that are human: widely different experiences, and widely different viewpoints. I prefer to assume I am working with the later, as I've found you get more from the schools when they "like" you, and if you create battle walls right off the bat, they are less likely to "like" you.

We only have a diagnosis through our school. We asked about how this would follow him in case he ever didn't want the label hanging around him as he ages. They said his school records are seperate from his IEP records and evals and that no colleges would ever even see them or know about it, unless he wanted them to. The only way a college would know he was a part of special ed is if he got a non-standard high school diploma. Our state has more than one diploma for students who cannot complete typical coursework. That shouldn't be the case for him, so we see no reason for it to come up later, unless he needs help in college.