Sharing an ASD dx with child when you're not sure if you buy it

[Anonymous]

Anonymous wrote:+1
Sometimes doctors diagnose children who have severe emotions or behaviors with ASD for insurance purposes.

Yes, unfortunately there is a point in getting the DX -- you can often get more help.

My kid is 14 and DX with ASD. He was happy to get the label because for him it explains why he is so different. H said he is glad he is not "just weird."

But the helpful part has been with school and his IEP -- the DX was a game changer in terms of the services he got.

Also, a DX confers a lot of rights in the state of Maryland -- look up the Autism Waiver.

[Anonymous]

A lot of parents in this thread are saying it's fine to wait to tell.

Our daughter was diagnosed at 11 yo and because we were not sure we agreed with the diagnoses and because it was during a weird time with covid, we waited a year to tell her.

Our daughter is still upset with us over this because she feels the diagnosis explains a lot of things about herself that she was blaming herself for. It gave her a certain freedom and acceptance of herself. My daughter says, "it really affects your perception of yourself and allows you to be easier on yourself, to know the diagnosis. And it's not the sort of information you can keep to yourself -- it profoundly impacts the experience of your child. The longer you wait, the worse it will be -- for yourselves and for your child -- when your child does find out. It is your child's right to know, and you should tell them now, you're not doing yourself or your child any favors by keeping it a secret. It's a very common experience for people getting an ASD diagnosis to feel a weight lifted off your chest, to know that you're not weird or deficient, but there's an explanation for your experience and feelings."

Just to go against the grain of all the other parents in here -- from a kid's perspective, my middle schooler would have preferred to know when we knew.

[Anonymous]

I will also say that some parents in this thread are coming off as resistant to the diagnosis of their child made by a professional perhaps because they don't want to accept it themselves for what it might mean to their own perception of their kid and how it might change their kid's future. When I got the diagnoses, it didn't fit with my perception of my child. But looking back through the years, the pieces do add up, I guess I just didn't want to make the connections.

My brother raised his three kids in a religious household and now it turns out their oldest son is gay and all his life he's been teaching them that gay is wrong and goes against the bible. What kind of damage has he already done to his kid, even though he grew up in a loving home? It's not the same thing that's happening with these delayed communications of a diagnosis, but it's on a similar spectrum of resistance to who your child is inside. I know because I did it, too.

We all need to let go and let our kids be who they are and accept them and love them as they are, and let go of our other ideas. As they are is actually effing amazing if you take a good hard look, I promise you.

[Anonymous]

In your shoes I would not. DC’s mental health improved significantly after finding our about the Dx but that was because their mental health problems mostly stemmed from issues related to ASD, like feeling shame for not being able to handle transitions at school, having poor relationships with teachers and peers because of communication deficits, etc.

The diagnosis was helpful in two ways: 1) it took the shame out of the struggles because DC could think of their behavior in terms of a neurotype rather than “oh no something is wrong with me” and b) it gave them a direction for improvement. After the dx I could easily explain that their behavior was being interpreted as rude, and while DC didn’t love hearing that, taking the shame out of it made it easier to accept my instruction about improving communication. They even started reading manners guides.

So I would say keep the dx in your back pocket and if someday you do think that it would be helpful, share it then.

[Anonymous]

I would like to hear more about OP's child's experiences with feeling big emotions and having trouble with emotional regulation before assuming that their child is not having emotional issues that the child could better understand with an ASD diagnosis.

[Anonymous]

14:08 here and I want to add that we told Dx right after the evaluation, which was at age 13.

[Anonymous]

DS was diagnosed with ASD very young and we weren’t sure. We didn’t share because we didn’t see a need. Later on, we did share the ADHD diagnosis right away. He’s a teen now and we have moved since then. His current doctors and therapist do not know about that early ASD diagnosis. We didn’t transfer records and no one has brought it up as a possibility ever. It’s a spectrum and sometimes I think misdiagnosed too early.

[Anonymous]

I know funny people who have autistic traits.

[Anonymous]

I would tell him that he has things in common with people who have autism, here is what they are and how we will help him handle those things.

We have a kid this age and have talked about autism with him at intervals because it’s relevant (his friends, our friends, characters in books, etc). So in our case this would not be a stigmatizing “big reveal.”

[Anonymous]

Anonymous wrote:

Anonymous wrote:+1
Sometimes doctors diagnose children who have severe emotions or behaviors with ASD for insurance purposes.

op - yes!
I feel like I read and hear so often that people's kids who have behavioral issues such as easily angered, or overly emotional, often seem to get an ASD dx. I don't doubt that there is some neurodiversity, but poor emotion regulation doesn't feel like the CORE criteria for ASD dx.
to others points though the spectrum is now so wide that it's impossible to tell. I also find it hard to believe that hannah gadsby is autistic (even though she has that 'vibe') only because you could only be so funny if you were AMAZING at perspective taking.

You have Gadsby all wrong. She is not that funny because she is great at “perspective taking”—she is that funny because she is highly intelligent and has inferred through observation what rules other people are following. That’s autism!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:+1
Sometimes doctors diagnose children who have severe emotions or behaviors with ASD for insurance purposes.

op - yes!
I feel like I read and hear so often that people's kids who have behavioral issues such as easily angered, or overly emotional, often seem to get an ASD dx. I don't doubt that there is some neurodiversity, but poor emotion regulation doesn't feel like the CORE criteria for ASD dx.
to others points though the spectrum is now so wide that it's impossible to tell. I also find it hard to believe that hannah gadsby is autistic (even though she has that 'vibe') only because you could only be so funny if you were AMAZING at perspective taking.

You have Gadsby all wrong. She is not that funny because she is great at “perspective taking”—she is that funny because she is highly intelligent and has inferred through observation what rules other people are following. That’s autism!

Actually I think she takes issue with the assertion that those w asd have mind blindness necessarily at all
https://www.theguardian.com/stage/2022/mar/19/hannah-gadsby-autism-diagnosis-little-out-of-whack

[Anonymous]

This is interesting op. Normally I’m on the end of tell early and make it part of their norm etc like you did with the adhd but I totally understand your hesitation - frankly your son sounds exactly like my son who has adhd and all of those emotional regulation issues are hallmarks of adhd (and adhd has been ruled out multiple times for my child). But of course I don’t know your child. If I were you I may get another eval just so you can rule it out but also understand the hesitation.

[Anonymous]

Anonymous wrote:I would tell him that he has things in common with people who have autism, here is what they are and how we will help him handle those things.

We have a kid this age and have talked about autism with him at intervals because it’s relevant (his friends, our friends, characters in books, etc). So in our case this would not be a stigmatizing “big reveal.”

Op I think this is the ticket.
I guess I don’t think ds is distressed by things that would be explained or relieved by telling him he has autism. He is distressed more by things that fall into the category of rejection sensitivity disorder - Eg we can say ‘don’t leave all your dirty clothes on the floor’ and he feels like we are ‘being mean’. I have actually tried to ask him stuff like - do you ever find it hard to know what others are thinking or feeling or why something might upset someone’ etc etc and he says no. Hence why it’s a puzzle. But I could talk to him about needing alone time sometimes and being inflexible in terms of autistic traits and see how that goes and how it goes with him overall for a little while

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:+1
Sometimes doctors diagnose children who have severe emotions or behaviors with ASD for insurance purposes.

op - yes!
I feel like I read and hear so often that people's kids who have behavioral issues such as easily angered, or overly emotional, often seem to get an ASD dx. I don't doubt that there is some neurodiversity, but poor emotion regulation doesn't feel like the CORE criteria for ASD dx.
to others points though the spectrum is now so wide that it's impossible to tell. I also find it hard to believe that hannah gadsby is autistic (even though she has that 'vibe') only because you could only be so funny if you were AMAZING at perspective taking.

You have Gadsby all wrong. She is not that funny because she is great at “perspective taking”—she is that funny because she is highly intelligent and has inferred through observation what rules other people are following. That’s autism!

Actually I think she takes issue with the assertion that those w asd have mind blindness necessarily at all
https://www.theguardian.com/stage/2022/mar/19/hannah-gadsby-autism-diagnosis-little-out-of-whack

It’s not the “yes or no to mind blindness” part of that that is relevant, I think, so much as what she says about how the networks among others are not apparent to her.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I would tell him that he has things in common with people who have autism, here is what they are and how we will help him handle those things.

We have a kid this age and have talked about autism with him at intervals because it’s relevant (his friends, our friends, characters in books, etc). So in our case this would not be a stigmatizing “big reveal.”

Op I think this is the ticket.
I guess I don’t think ds is distressed by things that would be explained or relieved by telling him he has autism. He is distressed more by things that fall into the category of rejection sensitivity disorder - Eg we can say ‘don’t leave all your dirty clothes on the floor’ and he feels like we are ‘being mean’. I have actually tried to ask him stuff like - do you ever find it hard to know what others are thinking or feeling or why something might upset someone’ etc etc and he says no. Hence why it’s a puzzle. But I could talk to him about needing alone time sometimes and being inflexible in terms of autistic traits and see how that goes and how it goes with him overall for a little while

If he is having outsized reactions to things that an NT person might take more in stride, that can be reflective of autism. Your original post talks about your son having more emotional reactions to things and needing more emotional regulation, and these reactions could be a product of autism that he is blaming on himself (lack of ability to control his emotions).’ If he thinks he is neurotypical, fwiw.