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

[Anonymous]

DS (9) received an asd and adhd dx a couple yrs ago. He is aware of the ADHD dx (those symptoms are v obvious) but we have not told him about the ASD dx because it does not feel like a slam dunk to us. DH has friends, makes friends, appears NT. Main problem is emotional regulation and a lot of frustration, some irritability mostly at home. Doesn't have significant issues with perspective taking, no special interests, stims - but then i feel like i read so many posts from people whose kids just have irritability and big feelings but no issues relating and get ASD dx. I don't want to NOT tell him if it is true, and have him end up with mental health issues down the line. Would really rather not do another eval just yet though i suppose that might be the only answer.

[Anonymous]

*hit send too fast! post was to ask for advice.

[Anonymous]

It’s fine not to share it.

[Anonymous]

We did not share my child's ADHD diagnosis with him until he was in middle school.

What will your child do with this information?

[Anonymous]

Anonymous wrote:We did not share my child's ADHD diagnosis with him until he was in middle school.

What will your child do with this information?

op - the adhd dx we did share (we had to bc he takes meds but i think he found it helpful)
the asd I worry when i hear people's posts about mental health in tweens and teens that NOT having it if it is accurate will lead to mental health issues down the line, to some posters points about permission to be who you are.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We did not share my child's ADHD diagnosis with him until he was in middle school.

What will your child do with this information?

op - the adhd dx we did share (we had to bc he takes meds but i think he found it helpful)
the asd I worry when i hear people's posts about mental health in tweens and teens that NOT having it if it is accurate will lead to mental health issues down the line, to some posters points about permission to be who you are.

My son has an ASD dx and knowing it (he’s a teen) hasn’t seem to help with his mental health, which is generally poor. He doesn’t seem to get much value from the knowledge and just talks about how much he hates being autistic. So the “permission to be who you are” hasn’t been helpful in our case. It’s no silver bullet.

[Anonymous]

What is the reason for the ASD dx?

[Anonymous]

I think it's fine not to tell, especially if you don't think the diagnosis makes sense. We have had a couple diagnoses that didn't make sense and ended up changing when new evaluations were completed.
At the end of the day, it's the specific challenges and the treatment for those challenges that matter, not the diagnosis.

[Anonymous]

Anonymous wrote:What is the reason for the ASD dx?

The evaluator at the time said he had a lack of reciprocal conversation (that was her main area of focus and reason for the dx). We have not found that to be the case. He does have other issues though - mainly he is irritable, oppositional, impulsive, easily frustrated. He does enjoy time with friends for the most part though - although he definitely needs decompression time

[Anonymous]

He's still on the young side, so I wouldn't tell him yet. As he gets older, the ASD symptoms the provider identified may resolve, or they may morph into an entirely different diagnosis. This happened with us...our DD was diagnosed with ASD, and while she did have some traits, the diagnosis just didn't feel right to us. We did share the info with her, but waited a few months to do so. It really didn't affect her that much, other than having some questions, she was ok with it. She agreed with some of the findings, but not most, and we didn't share the info with the school.

She did have limited eye contact and minimal reciprocal conversation with the provider who tested her, but she had only met this person 15 mins before the testing started. She was very uncomfortable being left alone with a new person in a new place and it definitely came across during the testing, but she had been totally different with us at home, with our extended family, and with people at school she was comfortable with. Fast forward 3 years and the ASD diagnosis was modified to moderate-severe social anxiety disorder. Good luck with whatever you decide.

[Anonymous]

We were told to rule out ASD at one point. But similar to the thinking of the OP...for our part, we have not pursued ASD testing specifically because I was worried about misdiagnosis and it doesn't feel right to me. My kid has a lot of sensory issues. But he has great perspective taking, really understands other people's feelings, and doesn't like routines much. Prefers spontaneity. So, it never felt quite right to me to get that ASD diagnosis even though the school team was pushing it when he was younger. Recently, a psychologist (who hadn't met him) told me 'well, it is a really WIDE spectrum, maybe you should see if he does have ASD'.

I just don't see the point really. If autism is such a wide spectrum that it includes people with great perspective taking who are highly emotionally intelligent, what is the point of the spectrum at all?

But like the OP, I wonder if I am damaging his mental health later by not helping him understand himself better in some way. He has a lot of diagnoses already and we have been very upfront about them: ADHD, anxiety, dyslexia/dysgraphia. And he certainly has some social anxiety and social skills issues related to ADHD impulsivity.....

[Anonymous]

Anonymous wrote:We were told to rule out ASD at one point. But similar to the thinking of the OP...for our part, we have not pursued ASD testing specifically because I was worried about misdiagnosis and it doesn't feel right to me. My kid has a lot of sensory issues. But he has great perspective taking, really understands other people's feelings, and doesn't like routines much. Prefers spontaneity. So, it never felt quite right to me to get that ASD diagnosis even though the school team was pushing it when he was younger. Recently, a psychologist (who hadn't met him) told me 'well, it is a really WIDE spectrum, maybe you should see if he does have ASD'.

I just don't see the point really. If autism is such a wide spectrum that it includes people with great perspective taking who are highly emotionally intelligent, what is the point of the spectrum at all?

But like the OP, I wonder if I am damaging his mental health later by not helping him understand himself better in some way. He has a lot of diagnoses already and we have been very upfront about them: ADHD, anxiety, dyslexia/dysgraphia. And he certainly has some social anxiety and social skills issues related to ADHD impulsivity.....

Frankly you have asked a golden question that many PP have asked on these forums - the spectrum has become so wide that it has diluted a lot of nuances and every kid is different. I am fighting "off" a DX we received as well because it doesn't quite either, and are more development delays than anything else. I would not share as the terminologies keep changing and it's not fair for kids to fully grasp the scientific community and the DSM-5 which btw will likely be updated again - so why bother - to understand himself is to just be who he is and be comfortable about it, why put labels on this?

[Anonymous]

I would reevaluate for ASD in a few years - and also would not tell my child. The symptoms you describe are also associated with ADHD, especially if unmedicated.

[Anonymous]

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

[Anonymous]

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.