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Diagnosis, who to tell and how?


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My teen had an evaluation recently and we just met with the dr and received the result of (whatever the current technical term is - I can't remember) = Aspergers.  This was not a surprise; we were prepared for the possibility of this result.  Also I think the dr said he is "borderline" for some other things but I don't remember exactly what.  It was a little bit of informational overload for me.  We are supposed to receive the complete written report soon.  Also we will get referrals to other providers for various kids of therapy, etc.  The only thing the dr didn't do was educational testing because of the only test results I supplied (very high ACT score in middle school); she said the school will do that.  She said the school should give him an IEP.

 

So...

 

Who do I tell, and how?

 

Meaning...

 

I will need to tell the public HS that he will be attending next year.  I am pretty sure that it was mentioned in posts here that I need to write a letter to the principal.  Should I wait for the official packet from the dr before I do that?  I think maybe the packet will have a letter that I include with my letter to the principal, but I am not sure.  In any case, I don't know what to say in the letter or what to ask the school for.

 

His psych, yes.

 

PCP?

Dentist?

 

Family members...

 

Who else?

 

This feels very overwhelming.

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Have you told your ds yet? My older ds (14 at the time of diagnosis) was relieved to hear he had ASD. His exact words to his SLP was "I felt like my life finally made sense".  I would definitely tell supportive family members. Knowing the diagnosis can help explain to family why ds says or does what he does. It will help them better understand him. If your ds is going to public school, you may want to access services that they provide as well as scaffold and offer accommodations in his regular classroom. Also, in some districts, just having that label will automatically qualify him for an IEP. Depending on your insurance and if you want private services also, you PCP would need to give a referral, so you would have inform them of the diagnosis.  You don't really *need* to tell dentist unless you want to or have some reason that might be beneficial for them to know, such as anxiety.

 

I found the book A Parent's Guide to High Functioning Autism Spectrum Disorder (2nd edition) extremely helpful. It has stuff in it about IEP, 504 plans, and the different therapies, etc. It will also clarify the process the doctor goes through to give the diagnosis. Highly recommend!

 

:grouphug: I know it is overwhelming at first, but things will calm down as you begin to understand your ds and the challenges as well as strength your child has. (yes strengths!)

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I wouldn't tell anyone who didn't absolutely need to know.  For example, I wouldn't tell the dentist unless dental appts were so difficult that knowing the diagnosis would help the dentist handle the dental appt better.

 

Thinking out loud:  what are areas of struggle at school that a 504 school accommodation might assist with?  What actual services would he need under an IEP (speech, OT, etc.)?  (In my state, no IEP except for speech unless academic performance is sufficiently below grade level.)  Things like extra time don't sound especially relevant if he did very well on the ACT in middle school, as that is a tightly-timed test.  I assume he is therefore 2e - does his performance tend to match his ability level?  What are his weaknesses?  Where do you see him needing help?  I'd start with what you think he'll need and then figure out what would be necessary to get that.

 

You'll really need IQ and achievement testing to get the full picture, to include working memory, processing speed, etc.

 

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I had a one-page piece of paper I could show to the school probably 2 months before I got the big sheaf of paper in the mail.

 

I would write the letter now, and then maybe you will get the report around the time as the meeting. You could do something like, if the meeting ends up scheduled too early, ask to wait for the papers to come back.

 

But we went ahead, and I gave them a copy of his paperwork after he already had his IEP.

 

But that was for him to start in a special pre-school, so it made sense.

 

I would try to get in something in writing and then ask the receptionist if there is someone to call or e-mail with questions.

 

As much as it is a huge deal to us as parents, the receptionist has parents coming in for IEP meetings often, so it is fairly routine for her to have someone asking who to talk to about it.

 

For me, PCP needs a copy of the report to go in his records when it comes.

 

I have verbally told the dentist and it is a note in his file, but for him it is not a big deal. The hygienist may speak to me before she sees him to ask if there is anything she should know, that is all.

 

It used to be a bigger deal at the dentist, but I was talking to them anyway at that time.

 

Otherwise -- I started telling people at church, and that was very hard at first. But now it is not hard for me to mention it if I need to mention it for some reason.

Edited by Lecka
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First and foremost, before you tell anyone, give yourself a few days to process.  You might also wait until you have read the report, as long as the delay isn't weeks.  Read it.  Let it process. Re-read it.  In the meantime, do more research, read some books, etc.  You need time to work through this yourself before you can effectively advocate for your child or determine who needs to know what.  People may have questions you might struggle to answer or may have misinformation you won't be able to correct.  

 

Take a deep breath.  Now slowly exhale.  Now give your brain a chance to process.  Hang in there.

 

Best wishes...

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@ wapiti:

 

Some areas of struggle will be:

 

introspective writing/analysis

seeing the "big picture"

remembering information that is presented as written material, like reading a textbook - he seems to forget it quickly

he does remember fiction to some extent, but doesn't seem to be able to discuss characters, motives, etc.

 

Some strengths:

 

He remembers verbal information very well. 

Science. 

Music.

 

He was given the WISC (I think that is the acronym) - is that IQ test? 

 

One service he will need for sure is help with social skills.  I don't know if schools can provide this for high school students?

 

Edited by TrixieB
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@ MyLittleBears

 

Yes, I told him.  His psych already told him that he (psych) suspected ds was on the the spectrum, so it wasn't a surprise.

 

I don't know how he feels about the label; he isn't able to express how he feels.  That is the hardest thing for me to deal with, I think.

 

Thank you for the book recommendation.  I just put it on hold at the library.

Edited by TrixieB
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To request evaluations for a possible IEP, send your written request to the special education department of your local public school (sometimes called student or pupil services instead of special education). You don't need to send it to the school principal. You can say that he was recently diagnosed and has related learning issues that are likely to require extra support in the classroom. Tell them you will forward the psych report once you receive it. Hand deliver the letter to make sure they receive it.

 

Under federal law, they have 30 days to either deny that there is enough evidence for evaluations to be needed or have you sign the parental consent for evaluations to begin. Technically, they have to respond over the summer, even though classes are not in session.

 

Has he been homeschooled up until now, or was he enrolled in school last year? Be aware that some school districts will DENY that initial request for evaluation until the student has been in the classroom for a period of time, so that they can get the classroom teachers' input. This is very frustrating for parents (ask me how I know). On the other hand, some schools are very nice to work with and don't delay things. You won't know until you get the process started, but don't be surprised if you have one of those schools that is more difficult to work with.

 

Someone upthread said that in some schools just having an autism diagnosis will qualify a student for an IEP. This is not the case everywhere, just so you know. It's not true for our district.

 

The school should have social skills therapy through a speech therapist. There will be a box on the form that you sign to approve the evaluations that is for speech. Make sure that box is checked, even if he does not have a speech problem. Social skills and pragmatics testing falls under the umbrella of speech. It's easy to not know this, and the school might not tell you.

 

You can also get social skills therapy through a private speech therapist, which your insurance may cover.

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@ Storygirl

 

Thank you! 

 

This year he was enrolled in a private school, as an extension student, so he will have a 9th grade private school transcript.  I don't know if that will help with avoiding delays?  I don't know how the public school would get teacher feedback for the private school teachers, as the teachers we used were independent contractors, so to speak.  I guess whatever happens, we just have to roll with it, as we really don't have any other choice for 10th grade.

 

It looks like IEP for autism diagnosis is not automatic in our district. 

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What I've been told, can't guarantee it's really correct, is that by high school the IEP process isn't really about solving problems but more helping them get through.  So he'll get the IEP, but they might not kick in with everything you'd like to make happen.  You'll want to do as much privately as you can afford and then let the school come in with their services as well once they get the IEP done.  

 

Some school districts really are ok and some aren't.  Ours has specifically said REPEATEDLY they are happy to leave kids with ASD with no IEP *at all*.  So he may qualify but they may put something other than ASD as his qualifying condition.  They may not offer as much in services as you would think ideal.  That's why I'm saying make happen privately what you can.

 

The other thing about going privately is you will then have therapists and people working with him who can go into the school team meetings with DATA.  Data is a huge buzzword and it backs up what the psych is saying.  So if you were to start interventions NOW, it would actually improve how the IEP process goes.  

 

I'm glad you got the evals, even if it's overwhelming.  I think the only person I'd be wanting to tell, outside the school IEP team, is your child (if he understands and has a desire to know) and your own support people.  As people on the board here told me, it's your business when you use the label and when you don't.  It's private.  If he's gone to the dentist for 14 years and it didn't matter, then it still doesn't matter.  I kind of pick and choose.  When you use the term, then you have to put up with everyone's stories (that often don't apply), their opinions (that aren't accurate), their questions, and even their accusations.  The latter is what I'm tired of.  I'm tired of the WOW HE DOESN'T LOOK LIKE IT...  Like if he just grew antennae or something then they'd KNOW...

Edited by OhElizabeth
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@ Storygirl

 

Thank you! 

 

This year he was enrolled in a private school, as an extension student, so he will have a 9th grade private school transcript.  I don't know if that will help with avoiding delays?  I don't know how the public school would get teacher feedback for the private school teachers, as the teachers we used were independent contractors, so to speak.  I guess whatever happens, we just have to roll with it, as we really don't have any other choice for 10th grade.

 

It looks like IEP for autism diagnosis is not automatic in our district. 

 

You might be able to expedite the IEP process by having the teachers from the old school fill out the questionnaires.  It's at least worth a try.  Otherwise it's going to get bogged down and take a while.  Not the end of the world, but it takes a while.

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I would recommend waiting to tell most casual aquantances of the diagnosis for a bit. As DS matures, he may or may not care about it being told to any/everyone, or may want privacy.

 

My DS blurts out his diagnosis to anyone willing to listen (SLD), and has met random people with dyslexia all over the place (not surprising since it's pretty common). IDK if it helps society and his relationships or hinders him to have diagnoses common knowledge. There will be plenty of people who might be understanding and helpful, and others who may assume something incorrectly.

 

I'm partly glad to discuss DS's diagnosis with anyone, but I also feel maybe I should be more discreet.

 

Definitely family should know, if the relationship is good.

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Definitely family should know, if the relationship is good.

 

I wouldn't say that.  If they don't know by now he's quirky, why does it matter?  Just because they're blood doesn't mean they need to know.  

 

This is HIS business, his medical, psychological status.  It's HIS CHOICE who he wants to tell and he really ought to have some say in his privacy too, when there's no reason for those people to know.  

 

Fwiw, I have relatives who actually wanted to read my ds' IEP to understand him better and to improve their interaction with him.  I kid you not.  And I have relatives who could care less.  People just vary.  But I think just to say oh let it be the topic over the Thanksgiving table, not really.  It's his private business.  If he wants it out, let him bring it out.  

 

Remember, once that diagnosis gets out there, then he has to deal with the REPERCUSSIONS of that.  Anything from joking to misunderstanding what the diagnosis means to sarcasm and accusations to whatever.  Why should he deal with that?  Will putting his label in that group as a topic of discussion help them interact with him better?  Or is it really about YOU?  

 

At some point, this is about the parent feeling like they just got a big Scarlet A pinned on them, like everybody sees.  And when you go out places, saying the A word can be really hard!  And it's actually true that talking about it makes it a bit better.  But it's not necessary to talk with everyone and it's not *safe* to talk with everyone.  

Edited by OhElizabeth
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We may be in the same boat. DS (17) has been seeing a psychiatrist for anxiety issues since November and she now feels certain he is on the spectrum, although we haven't (yet) pursued a formal evaluation. But I trust this doc and her instincts, and it agrees with what I've thought for years. So we're going on the assumption right now that he is on the spectrum. DH and I have debated who we will or should tell. At this point DS is very successful academically as a rising senior in an early college high school program, so there seems no need to tell the school. He's medicated for anxiety and doing much better, which was his main stumbling block as far as school goes. I assume his pediatrician already knows what the psych thinks, as they're part of the same medical group and so share his electronic chart. We've debated telling family but haven't decided yet. His grandmother would only worry. The rest of the family I suspect just think he's extremely quiet and very smart, so . . . what point would be served by telling them? None that we can really think of. At 17 we really feel like it should be his decision, although things like that are where his communication issues/difficulty expressing his feelings really show up.

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At his age, it's probably going to be a more exclusive group of people that you'll tell. We pick and choose--we've gotten less flack with people and their expectations when they know. It tends to go from from an ignorant "Well, he's smart enough to know better than to do xyz" to "Oh, that kind of makes sense...he's doing really well!" 

 

Our neighbors know (parents) because we wanted to be sure that if our son is alienating his good friend with inappropriate behavior, we can intervene. I am not sure the friend knows, though he does know that our son has some quirks. This friend is exceptionally fantastic kid, and we don't want our son to lose his friendship if he acts too immature--our son is the kind of boy that still likes some things that are a bit young for him while simultaneously liking more sophisticated things too. If we need to nudge his shared interests with this friend toward more mature things, we want to be sure we do that. 

 

As far as for school, Storygirl gave you great information. I would add that you might really appreciate this book: https://www.amazon.com/When-School-Says-How-Get-ebook/dp/B00E81DHTS?ie=UTF8&btkr=1&ref_=dp-kindle-redirect   It's really about the negotiating and people side of the IEP process. Do not neglect to know your rights, but do read this book. It's very good.

 

You need social and emotional training whether or not you get it from the school. Just DO IT. :-) He can have a sky-high vocabulary, but yet have only two buckets to hold his emotions and such, usually "good" and "bad." He will need to know what the words mean, how those feelings feel inside himself (he might not experience sensations and feelings in the same way a neurotypical kid will--he might have physical sensations for things NT feel as more of an emotion, for instance), and he will also need to know body language that goes with those things. He could be "clueless" about reading others' emotions, or he could be overly-sensitive while also not understanding them (for instance, he could read all negative situations as being on the same level and not really be able to place a small reaction on a scale with a big reaction). He will also need to know how to understand what other people think and feel and realize it's not going to be same as him all the time--this is often referred to as theory of mind. Self-awareness is another term that comes into play--noticing yourself and your reactions to things and being able to shape that (that's probably a really lame definition). My son has decent self-awareness for a kiddo on the spectrum, but it's not typical. When he is on ADHD meds, he feels a sense of inhibition that people naturally have, but he lacks. He didn't know how to express that at first--he would say things like, "I can't sing as well on the Kids' Praise Team on meds." Well, his singing didn't change, but the meds gave him a feeling that everyone was looking at him, which they are--he's up front singing. He does not like this feeling, but it's NORMAL, so we and his various therapists have worked to encourage him that it's normal and something that is GOOD. It's the kind of thing that keeps you from going "too far" in situations. So, you will have to watch out for those little clues to puzzle together what he'll need to learn in this regard.

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