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

[Anonymous]

If the main driver of the ASD dx was lack of reciprocal conversation with the evaluator (an adult stranger) and you and his teachers aren't seeing it, it sounds like a mis dx, especially given that the adhd seems like a much better fit.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My 14 year old daughter has autism. She has 6 or 7 good friends and really enjoys spending time with them and I've seen her have great conversations with them. She does fine, but sometimes she wants to get her little point in even if the conversation drifts in another direction. She is great at one on one conversations. She does have outsize emotions and reacts strongly to things that NT people do not have such big reactions for, and a lot of that is probably related to having trouble understanding and so being able to predict/control her own emotions. Helping her learn how to manage her emotions is the biggest battle for us, not helping her fit in socially or develop relationships.

I'm the PP whose daughter wishes we hadn't waited to tell her her ASD diagnosis and I see that basically nobody in this thread agrees with me that you should tell your son. Our daughter wishes we had told her when we knew. We waited a year, and you have already waited a few years. I don't know how else to express how strongly she feels that she was owed the information we withheld, which we believed we withheld out of care for her and her view of herself. ymmv. Good luck to you.

pp what were her symptoms that caused you to get her tested?

CBT therapy for managing her emotions wasn't helping; she didn't like it and didn't want to do it or the homework. Then group therapy with a bunch of other girls (many of whom were older) was a bust and she wasn't fitting in. And she was still having big emotions at school and at home, mostly evidenced through crying. (I think a lot of girls turn their emotions and actions inwards and reflect their emotions through crying, while boys will sometimes turn their emotions outwards and yell or get mad or act out. But I think it's the same basic emotional issue and both genders often ultimately blame themselves for these big emotions that other kids don't seem to have problems with.)

Her social skills as a girl were more obviously a little behind in a group of older girls than they were among kids her own age, fwiw. Reading cues about what to say and how to respond to the pecking order in girl group relationships as a 10 year old among other tweens was a little beyond her, and I do think girl relationships as tweenagers can be difficult and challenging even for NTs. My cousin says there's a whole social order re who can respond to instagram posts and how quickly you need to comment and what types of things you can say -- that's bonkers! My kid is certainly not on that social level, and her emotional reactions at school also have an effect on her social relationships. But she still has good friends and good relationships at school, has decent one on one conversations with friends and her family, has fun at summer camp, etc.

op - this is so interesting - so she does not have any special interests or sensory issues?

She doesn't like tags in the back of her shirts. She has hobbies that she enjoys and spends time on -- she likes to sew, and spends a bunch of free time sewing, but she doesn't feel the need to talk about sewing all the time. She likes memes. She doesn't seem all that different from a bunch of other kids, until you stress her out, and then she tends to lose it and cry when other kids would just somehow deal.

op - this is so interesting bc this seems like emotional regulation as the core deficit that gained you the asd dx? or is it that the emotional outbursts are related to social issues?
I think this is where a lot of parents are getting tripped up where kids are getting asd dx based on emotional regulation which may be fine and great, but diverges from most people's understanding of the core deficits that constitute a dx.

[Anonymous]

Anonymous wrote:Why not tell him that he has an ASD diagnosis but that you guys aren't sure it's correct? That way you all can keep your eyes out for whether it clicks or not, and your son will know you have his back?

An actual doctor with medical credentials gave this diagnosis and a dozen parents in this thread who haven't met OP's kid are disagreeing with the doctor. Okay, but it seems like the doctor has reasons for the diagnosis that everybody here is just ignoring. There was actual lack of back and forth conversation with the doctor (a lack that might not really be obvious in elementary school boy relationships).

There is so much resistance to the ASD diagnosis in this thread! Two pages ago I literally typed out word for word what my 14 year old daughter advised, which was to tell the kid his diagnosis, that he deserves to know and think about it for himself. We tried, kid, we tried! *shrug*

I guess that's an option... i do worry that if all of us are baffled by what autism is now that a 9 year old boy is going to be extra confused in the gray area. because if i say 'you got an asd dx because you find it hard to make back and forth conversation' he's going to say 'I do not find that to be an issue' and he's not wrong. I mean he's not david letterman but he does fine.

[Anonymous]

Anonymous wrote:If the main driver of the ASD dx was lack of reciprocal conversation with the evaluator (an adult stranger) and you and his teachers aren't seeing it, it sounds like a mis dx, especially given that the adhd seems like a much better fit.

Look, the doctor could not possibly have diagnosed ASD based solely on lack of back and forth conversation. They need to find criteria from a range of three or four driving factors and provide that in the support to back it up. OP hasn't shared what those other factors are, but I presume they are in the report somewhere, otherwise it does not seem possible that credentialed doctor could have made and supported the diagnosis.

[Anonymous]

Anonymous wrote:I'm not sure I really understand what you're saying but she has ADHD also.

pp here and realize my question was very badly worded my mind is a bit jumbled right now. But now that you've confirmed she has ADHD - I guess I am just very confused because ADHD can also come with a lot of those small (or large) immaturities that you describe in social interaction and the emotional sensitivity is extremely common, so I'm so curious how the evaluator (or plural) distinguished between those symptoms being a part of her adhd rather than a separate diagnosis since she doesn't have the more classic symptoms of asd.

I am not questioning the diagnosis, just trying to understand for my own son with adhd because you could have easily been describing him but ASD has been ruled out multiple times and I have generally agreed with this. And I think this is where op is struggling, how do you know it isn't just the adhd causing some social skill deficits and low distress tolerance? (not how do YOU know, but how does one hypothetically know )

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My 14 year old daughter has autism. She has 6 or 7 good friends and really enjoys spending time with them and I've seen her have great conversations with them. She does fine, but sometimes she wants to get her little point in even if the conversation drifts in another direction. She is great at one on one conversations. She does have outsize emotions and reacts strongly to things that NT people do not have such big reactions for, and a lot of that is probably related to having trouble understanding and so being able to predict/control her own emotions. Helping her learn how to manage her emotions is the biggest battle for us, not helping her fit in socially or develop relationships.

I'm the PP whose daughter wishes we hadn't waited to tell her her ASD diagnosis and I see that basically nobody in this thread agrees with me that you should tell your son. Our daughter wishes we had told her when we knew. We waited a year, and you have already waited a few years. I don't know how else to express how strongly she feels that she was owed the information we withheld, which we believed we withheld out of care for her and her view of herself. ymmv. Good luck to you.

pp what were her symptoms that caused you to get her tested?

CBT therapy for managing her emotions wasn't helping; she didn't like it and didn't want to do it or the homework. Then group therapy with a bunch of other girls (many of whom were older) was a bust and she wasn't fitting in. And she was still having big emotions at school and at home, mostly evidenced through crying. (I think a lot of girls turn their emotions and actions inwards and reflect their emotions through crying, while boys will sometimes turn their emotions outwards and yell or get mad or act out. But I think it's the same basic emotional issue and both genders often ultimately blame themselves for these big emotions that other kids don't seem to have problems with.)

Her social skills as a girl were more obviously a little behind in a group of older girls than they were among kids her own age, fwiw. Reading cues about what to say and how to respond to the pecking order in girl group relationships as a 10 year old among other tweens was a little beyond her, and I do think girl relationships as tweenagers can be difficult and challenging even for NTs. My cousin says there's a whole social order re who can respond to instagram posts and how quickly you need to comment and what types of things you can say -- that's bonkers! My kid is certainly not on that social level, and her emotional reactions at school also have an effect on her social relationships. But she still has good friends and good relationships at school, has decent one on one conversations with friends and her family, has fun at summer camp, etc.

op - this is so interesting - so she does not have any special interests or sensory issues?

She doesn't like tags in the back of her shirts. She has hobbies that she enjoys and spends time on -- she likes to sew, and spends a bunch of free time sewing, but she doesn't feel the need to talk about sewing all the time. She likes memes. She doesn't seem all that different from a bunch of other kids, until you stress her out, and then she tends to lose it and cry when other kids would just somehow deal.

op - this is so interesting bc this seems like emotional regulation as the core deficit that gained you the asd dx? or is it that the emotional outbursts are related to social issues?
I think this is where a lot of parents are getting tripped up where kids are getting asd dx based on emotional regulation which may be fine and great, but diverges from most people's understanding of the core deficits that constitute a dx.

+1 I'm the pp making confusing posts around this because I can't seem to get my words out this morning but this is exactly where I'm surprised and tripped up.

[Anonymous]

What other criteria for the diagnosis were in the report besides the lack of back and forth conversation?

My daughter had other criteria mentioned and we weren't totally sold that they fit or were correctly described in the report. But on the whole, and as our kid aged, I can see how the diagnosis fits. For example, while my kid is sensitive to issues of social justice and helps out other kids who are struggling (something I though ASD kids weren't supposed to be able to recognize because I thought ASD kids lacked empathy ha ha jokes on me), there is a little bit of a wall up in seeing/recognizing what's going on with other people in a way that she doesn't really even know she's missing, such as, like, sometimes failing to recognize when a situation is supposed to be centered on another kid, or not thinking about someone's birthday unless we ask her to, if that makes sense. Also I didn't realize it when she was younger but sometimes on the playground she was more following the big group of kids around than actually playing in the big group itself -- so it seemed like she was a part of the group but was actually more parallel to the group, if that makes sense. I didn't really understand this until after I read more about ASD and how it can present and took a hard look back at things I missed. (She was also evaluated for ASD early on but was considered not to meet the criteria when younger -- though because a large part of diagnosing ASD is the behavior that parents self report, if the parents aren't grokking the behavior that meets the criteria and describing it on the forms, then the earlier diagnosis will be missed.)

I don't mean to represent my kid as someone who has fully developed social skills who presents as totally normal. Some kids see my kid's emotional disregulation at school and don't like them. They are more nerdy and not in the popular crowd. But they still have a core group of friends that they enjoy spending time with.

I would tell your kid their diagnosis and let them know you're not sure it really fits them (you can even say why), but let them know that you thought it was important for them to know and that you can look at it together as they get older and see if it really fits or not. Good luck!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My 14 year old daughter has autism. She has 6 or 7 good friends and really enjoys spending time with them and I've seen her have great conversations with them. She does fine, but sometimes she wants to get her little point in even if the conversation drifts in another direction. She is great at one on one conversations. She does have outsize emotions and reacts strongly to things that NT people do not have such big reactions for, and a lot of that is probably related to having trouble understanding and so being able to predict/control her own emotions. Helping her learn how to manage her emotions is the biggest battle for us, not helping her fit in socially or develop relationships.

I'm the PP whose daughter wishes we hadn't waited to tell her her ASD diagnosis and I see that basically nobody in this thread agrees with me that you should tell your son. Our daughter wishes we had told her when we knew. We waited a year, and you have already waited a few years. I don't know how else to express how strongly she feels that she was owed the information we withheld, which we believed we withheld out of care for her and her view of herself. ymmv. Good luck to you.

pp what were her symptoms that caused you to get her tested?

CBT therapy for managing her emotions wasn't helping; she didn't like it and didn't want to do it or the homework. Then group therapy with a bunch of other girls (many of whom were older) was a bust and she wasn't fitting in. And she was still having big emotions at school and at home, mostly evidenced through crying. (I think a lot of girls turn their emotions and actions inwards and reflect their emotions through crying, while boys will sometimes turn their emotions outwards and yell or get mad or act out. But I think it's the same basic emotional issue and both genders often ultimately blame themselves for these big emotions that other kids don't seem to have problems with.)

Her social skills as a girl were more obviously a little behind in a group of older girls than they were among kids her own age, fwiw. Reading cues about what to say and how to respond to the pecking order in girl group relationships as a 10 year old among other tweens was a little beyond her, and I do think girl relationships as tweenagers can be difficult and challenging even for NTs. My cousin says there's a whole social order re who can respond to instagram posts and how quickly you need to comment and what types of things you can say -- that's bonkers! My kid is certainly not on that social level, and her emotional reactions at school also have an effect on her social relationships. But she still has good friends and good relationships at school, has decent one on one conversations with friends and her family, has fun at summer camp, etc.

op - this is so interesting - so she does not have any special interests or sensory issues?

She doesn't like tags in the back of her shirts. She has hobbies that she enjoys and spends time on -- she likes to sew, and spends a bunch of free time sewing, but she doesn't feel the need to talk about sewing all the time. She likes memes. She doesn't seem all that different from a bunch of other kids, until you stress her out, and then she tends to lose it and cry when other kids would just somehow deal.

op - this is so interesting bc this seems like emotional regulation as the core deficit that gained you the asd dx? or is it that the emotional outbursts are related to social issues?
I think this is where a lot of parents are getting tripped up where kids are getting asd dx based on emotional regulation which may be fine and great, but diverges from most people's understanding of the core deficits that constitute a dx.

No one’s saying that. Just you. You try to discredit a Dx by latching on to one thing in a Op.
You’d have to read the 20 page neuropsych and have the 1-2 hour consult to know what generated the Dx.

[Anonymous]

Anonymous wrote:Why not tell him that he has an ASD diagnosis but that you guys aren't sure it's correct? That way you all can keep your eyes out for whether it clicks or not, and your son will know you have his back?

An actual doctor with medical credentials gave this diagnosis and a dozen parents in this thread who haven't met OP's kid are disagreeing with the doctor. Okay, but it seems like the doctor has reasons for the diagnosis that everybody here is just ignoring. There was actual lack of back and forth conversation with the doctor (a lack that might not really be obvious in elementary school boy relationships).

There is so much resistance to the ASD diagnosis in this thread! Two pages ago I literally typed out word for word what my 14 year old daughter advised, which was to tell the kid his diagnosis, that he deserves to know and think about it for himself. We tried, kid, we tried! *shrug*

I wouldn’t advise opening that can of worms where any kid or adult or parent can simply negate a doctor or Dx. If you want compliance down the road, don’t start dismissing teachers and doctors and experts in front of an adhd or Asd kid.

Keep going with the adhd treatment and say they always monitor for comorbidities and one is ASD. Others are anxiety, depression.

[Anonymous]

Anonymous wrote:What other criteria for the diagnosis were in the report besides the lack of back and forth conversation?

My daughter had other criteria mentioned and we weren't totally sold that they fit or were correctly described in the report. But on the whole, and as our kid aged, I can see how the diagnosis fits. For example, while my kid is sensitive to issues of social justice and helps out other kids who are struggling (something I though ASD kids weren't supposed to be able to recognize because I thought ASD kids lacked empathy ha ha jokes on me), there is a little bit of a wall up in seeing/recognizing what's going on with other people in a way that she doesn't really even know she's missing, such as, like, sometimes failing to recognize when a situation is supposed to be centered on another kid, or not thinking about someone's birthday unless we ask her to, if that makes sense. Also I didn't realize it when she was younger but sometimes on the playground she was more following the big group of kids around than actually playing in the big group itself -- so it seemed like she was a part of the group but was actually more parallel to the group, if that makes sense. I didn't really understand this until after I read more about ASD and how it can present and took a hard look back at things I missed. (She was also evaluated for ASD early on but was considered not to meet the criteria when younger -- though because a large part of diagnosing ASD is the behavior that parents self report, if the parents aren't grokking the behavior that meets the criteria and describing it on the forms, then the earlier diagnosis will be missed.)

I don't mean to represent my kid as someone who has fully developed social skills who presents as totally normal. Some kids see my kid's emotional disregulation at school and don't like them. They are more nerdy and not in the popular crowd. But they still have a core group of friends that they enjoy spending time with.

I would tell your kid their diagnosis and let them know you're not sure it really fits them (you can even say why), but let them know that you thought it was important for them to know and that you can look at it together as they get older and see if it really fits or not. Good luck!

I’m one of the pps who was asking for more clarity (so I could better understand my own kid) and greatly appreciate you sharing and expanding. This is really helpful and sounds like it was a skilled evaluator and you are great parents.

[Anonymous]

OP, I could have written a similar post, so thank you for posting it.
Our evaluator said that the kid is very very high functioning.
I am not going to share the diagnosis - we did share the ADHD one because it’s pretty obvious and pronounced.
I am not sure how to tackle the ASD one, there is so little presentation if at all. What am I even going to say, you did not want to share when you were a toddler and now you are often inflexible when stressed out, thus you have an ASD. I’ve figured, we’ll address the deficit that was pointed out and go from there.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Why not tell him that he has an ASD diagnosis but that you guys aren't sure it's correct? That way you all can keep your eyes out for whether it clicks or not, and your son will know you have his back?

An actual doctor with medical credentials gave this diagnosis and a dozen parents in this thread who haven't met OP's kid are disagreeing with the doctor. Okay, but it seems like the doctor has reasons for the diagnosis that everybody here is just ignoring. There was actual lack of back and forth conversation with the doctor (a lack that might not really be obvious in elementary school boy relationships).

There is so much resistance to the ASD diagnosis in this thread! Two pages ago I literally typed out word for word what my 14 year old daughter advised, which was to tell the kid his diagnosis, that he deserves to know and think about it for himself. We tried, kid, we tried! *shrug*

I wouldn’t advise opening that can of worms where any kid or adult or parent can simply negate a doctor or Dx. If you want compliance down the road, don’t start dismissing teachers and doctors and experts in front of an adhd or Asd kid.

Keep going with the adhd treatment and say they always monitor for comorbidities and one is ASD. Others are anxiety, depression.

Right! Far better to put aside diagnosis out of hand for now and not even tell the kid that a doctor diagnosed them with it -- that is not at all "simply negat[ing] a doctor or Dx" even though it actually fully withholds the info of the actual diagnosis from the child.

Your proposed solution of telling the child about comorbidities is better than nothing imho, but is still deficient. The kid has a right to know of their actual diagnosis that they sat through testing for, and I have lived through this with my own kid, but wtf do I know?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Why not tell him that he has an ASD diagnosis but that you guys aren't sure it's correct? That way you all can keep your eyes out for whether it clicks or not, and your son will know you have his back?

An actual doctor with medical credentials gave this diagnosis and a dozen parents in this thread who haven't met OP's kid are disagreeing with the doctor. Okay, but it seems like the doctor has reasons for the diagnosis that everybody here is just ignoring. There was actual lack of back and forth conversation with the doctor (a lack that might not really be obvious in elementary school boy relationships).

There is so much resistance to the ASD diagnosis in this thread! Two pages ago I literally typed out word for word what my 14 year old daughter advised, which was to tell the kid his diagnosis, that he deserves to know and think about it for himself. We tried, kid, we tried! *shrug*

I wouldn’t advise opening that can of worms where any kid or adult or parent can simply negate a doctor or Dx. If you want compliance down the road, don’t start dismissing teachers and doctors and experts in front of an adhd or Asd kid.

Keep going with the adhd treatment and say they always monitor for comorbidities and one is ASD. Others are anxiety, depression.

Right! Far better to put aside diagnosis out of hand for now and not even tell the kid that a doctor diagnosed them with it -- that is not at all "simply negat[ing] a doctor or Dx" even though it actually fully withholds the info of the actual diagnosis from the child.

Your proposed solution of telling the child about comorbidities is better than nothing imho, but is still deficient. The kid has a right to know of their actual diagnosis that they sat through testing for, and I have lived through this with my own kid, but wtf do I know?

pp you seem overly frustrated about this and taking it personally. I am sure you did the right thing for your child.
bear in mind that what many of us are saying is that sharing an asd diagnosis might not help our kid better understand themselves. what we are saying is that because emotional regulation is not diagnostic of asd, then if you have a kid whose biggest issue is emotional regulation, it is not clear how you are helping the child by saying 'you have trouble regulating your emotions because you have autism' and then the kid reads about the definition of autism and is like - at no point is this diagnostic of autism. Now if you have a kid who is struggling due to distress around social relationships or external stimuli then yes you have an open shut case to tell them. my kid just gets emotional and a little ragey at the end of the day when meds wearing off - not sure how to pin that squarely enough on autism to share the dx - maybe! but you can see how some of us have a conundrum

[Anonymous]

I can't find all the research on this right now, but for what it's worth, emotional disregulation used to be considered a core symptom of ADHD and not just an associated symptom. I believe it was part of the diagnostic criteria until the fourth edition of the DSM, but maybe I'm not remembering clearly. It is a big shame that we don't focus on the emotional regulation difficulties as much because we don't tend to treat them as much when we have ADHD. And now it looks like people are looking for other reasons for the emotional disregulation, like ASD.

[Anonymous]

Anonymous wrote: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.

Just re-posting my daughter's take on this, again, quoted above. My daughter was attributing her lack of control over her emotions to a failing within herself, something other kids were able to manage but that she was deficient in. She was released from this by knowing of her diagnosis and no longer blamed herself for having greater than usual difficulty in managing her emotions. She read about ASD and saw where she fit into some parts of the spectrum and didn't fit into others. Some things clicked for her. If your kid is having emotional behaviors that fall outside what a lot of other kids are experiencing, it's possible that they are blaming themselves for these behaviors and see themselves, quietly, maybe without even telling you, as a big failure. I don't want that for anyone's kid. Sorry for taking the thread so personally, but it is a personal issue to my family given the experience we have had, and it's weird seeing so many people in this thread talk about actually having received both ADHD and ASD diagnoses for their kids and sharing the ADHD diagnosis but withholding the ASD diagnosis. I see it as resulting from the internal stigma we as parents feel from the diagnosis, whereas for our kids it is actually helpful, freeing information. But as we've all seen, ymmv.