WWYD Reporting Autism Diagnosis?

[Bens Momma]

Oldest DS was diagnosed on the autism spectrum with Asperger Syndrome at the end of 1st grade. He's extremely high functioning, has always gotten good grades, and had a 504 plan from grade 2-4, but grew out of the goals and it was recommended at that point that he didn't really need one anymore so he hasn't had one the past few years. Most of his symptoms center around anxiety, being shy (somewhat awkward, but not inappropriate) in social situations, some fine motor weakness (VERY mild), and some trouble transitioning.

Fast forward to this year....we moved, and he's now in middle school (new.) He's doing well in school, has one good/close friend but not really anyone else. He says he likes school and feels he's adjusted to middle school pretty well which I think is true. I was a middle school teacher before having kids and knowing how much social change, more responsibility, etc takes place during these years I was really worried, but I've been pleasantly surprised by him Anyway, his new pediatrician has recommended that we notify the school of his diagnosis and maybe meet with the guidance counselor to give him/her a head's up and see if they want to start a new 504. I have mixed feelings and want to support him. However, despite wishing he had another friend or two, I think he's doing well and don't want him "labelled" or his diagnosis to define him. We did mention it to his teachers at conferences, and every one of them had the same surprised reaction saying they "would never have guessed" other than that he was kind of quiet & shy. So would you just leave well enough alone or would you notify the school guidance counselor and see if they want him re-evaluated for a 504?

Thanks for your support & advice!
Momma to 2 ACTIVE DS
and the Third Musketeer

[annex]

The guidance counselor can assist without doing a whole 504 for him. School teams can provide accommodations without a 504 document for disabilities (and many prefer to rather than be bound to what is essentially a legal document.) My DD (now in 8th) with severe social anxiety would qualify for a 504 - but she absolutely doesn't want to be singled out so would not agree to any of the typical accommodations that would occur in a classroom. So we're just staying in email contact with the counselor, and handling situations as they arise. The main thing the counselor's really actively done is make sure our DD gets preferential class placement with her 1 good friend. I send a reminder email in August, and so far she's gotten most of her core classes with her 1 friend. Something simple like that may make a big difference if your DS only has 1 friend in the whole school, so I would encourage you to get the diagnosis on the counselor's radar now.

[niccig]

I would, in case you do need modifications you don't' have to start from scratch.

[HannaAddict]

I would do an update to his neuropsych report or shorter version and see what they say about the anxiety and other issues he might need a 504. I would also listen to your gut instinct and not necessarily self identify especially since the 504 is out of date and I think you will need some more recent testing to continue eligibility for accommodations. My child's friends are starting to get updated testing now that they are in middle school and before high school. Most are highly capable students. We are at an independent school though and people pay to be privately tested but still crazy long waits for the really good clinicians. But you've already told the teachers so the horse is out of the barn so to speak. It might be in his file anyway. I would want some sort of more recent assessment though and would want it first before talking to the school. It is pricey though.


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[annex]

The negative connotation of this post with the labelling apect is a hard one for me. My 8 year-old DS is on the spectrum, and after reading so much from the perspective of adult autistics, and also excellent histories of the diagnosis like Neurotribes, we actively encourage our son to embrace his label and not be ashamed of it. If I ask him what being autistic means, he will say "I have a super memory", and maybe with prompting will include that he struggles with using his words sometimes. Using high-functioning vs low-functioning to separate our kids is also pretty controversial so I've dropped them from my descriptions of my DS. I do get the sense that OP maybe is questioning whether the ASD label even applies to her DS, so maybe a new neuropsych workup is on order before going further to the school with identifying him. If her DS already identifies as autistic himself though, and embraces it as another cool aspect of his neurology and is learning how to advocate for accommodations around his needs, then having parents who don't want all school staff to know because they are worried about the label, may lead to all sorts of issues. With my middle school DD, I've let her take the lead for the most part in deciding when and with whom we share her social anxiety diagnosis - not so much because we don't want her being labelled as having a disability - but because she is a part of the sharing process and her consent in when/where it gets shared is important to us. She's always wanted us to share with school staff, so that's been helpful. I hope OP's DS is similarly part of the conversation about getting the counselor involved and/or getting a 504 plan.

[hbridge]

I PM'ed you...

Sending hugs...

[mackmama]

The negative connotation of this post with the labelling apect is a hard one for me. My 8 year-old DS is on the spectrum, and after reading so much from the perspective of adult autistics, and also excellent histories of the diagnosis like Neurotribes, we actively encourage our son to embrace his label and not be ashamed of it. If I ask him what being autistic means, he will say "I have a super memory", and maybe with prompting will include that he struggles with using his words sometimes. Using high-functioning vs low-functioning to separate our kids is also pretty controversial so I've dropped them from my descriptions of my DS. I do get the sense that OP maybe is questioning whether the ASD label even applies to her DS, so maybe a new neuropsych workup is on order before going further to the school with identifying him. If her DS already identifies as autistic himself though, and embraces it as another cool aspect of his neurology and is learning how to advocate for accommodations around his needs, then having parents who don't want all school staff to know because they are worried about the label, may lead to all sorts of issues. With my middle school DD, I've let her take the lead for the most part in deciding when and with whom we share her social anxiety diagnosis - not so much because we don't want her being labelled as having a disability - but because she is a part of the sharing process and her consent in when/where it gets shared is important to us. She's always wanted us to share with school staff, so that's been helpful. I hope OP's DS is similarly part of the conversation about getting the counselor involved and/or getting a 504 plan.

I didn't sense negativity or shame from the OP or previous posters. I do think it's incredibly personal how/if someone wants to share a diagnosis and that there isn't a wrong/right approach.

OP - I can understand your wanting to protect your child and not wanting him labelled. It sounds like you want to give him the opportunity for a fresh start. Since you've already told his teachers, I would imagine it's already been communicated to administration. I'm not personally familiar with 504's so am not sure if that's something you could get later as needed or if you need to do it now. If now only, then I'd pursue it. If not, I'd probably hold off.

[MamaKath]

I would let them know. It certainly is nothing you need to be secretive of, and may help them better meet his needs. As you approach high school, it is important for them to know what assistance, if any, may be needed due to the college boards overseeing much of the academics.

[Bens Momma]

I PM'ed you...

Sending hugs...

Thanks & I PM'ed you back!

[Bens Momma]

I think some read & responded to my OP as if I was not informing the school because I was ashamed of his diagnosis and/or the label. I'm sorry if it read that way, definitely NOT how I feel, nor my intention! He's a great kid & it's part of him, it makes him who he is. I was just saying that (as an educator in the past) I've seen kids be defined and/or limited by their diagnosis. Even when he had a 504 with flexible accommodations, he would rarely use them because he wanted to fit in and didn't want to be different or draw attention to himself. He's accepted that he has things & quirks that are just a part of him and has learned to adapt and live with them, but like any kid he just wants to fit in.

I guess I also wonder that if it's in his record, even though by law it shouldn't happen, will be be treated differently or discriminated against as he gets older (i.e. colleges, jobs, etc?) Maybe that's too overprotective & controlling of me and I just need to support him as best I can. I know he has great potential and I hope he can realize this too!

Thanks to all who have offered advice & support. I think although he's doing well and seems to like school, things can change and it can't hurt for them to know and have supports in place to help him if he needs it at some point.