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

[Anonymous]

In our house we had to tread lightly because my spouse, his brother and his father have HFA too and chaos is all around us.

So I don’t want our 10 yo w adhd and HFA Dx to associate all that negative stuff - from untreated hfa adults - with themselves.

[Anonymous]

Anonymous wrote:

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.

But outsized emotional reactions is not part of the key criteria for autism - although it may be a result. Emotional regulation is more hallmark of adhd. Autism dx requires:

Difficulties in social emotional reciprocity, including trouble with social approach, back and forth conversation, sharing interests with others, and expressing/understanding emotions.
Difficulties in nonverbal communication used for social interaction including abnormal eye-contact and body language and difficulty with understanding the use of nonverbal communication like facial expressions or gestures for communication.
Deficits in developing and maintaining relationships with other people (other than with caregivers), including lack of interest in others, difficulties responding to different social contexts, and difficulties in sharing imaginative play with others.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

But outsized emotional reactions is not part of the key criteria for autism - although it may be a result. Emotional regulation is more hallmark of adhd. Autism dx requires:

Difficulties in social emotional reciprocity, including trouble with social approach, back and forth conversation, sharing interests with others, and expressing/understanding emotions.
Difficulties in nonverbal communication used for social interaction including abnormal eye-contact and body language and difficulty with understanding the use of nonverbal communication like facial expressions or gestures for communication.
Deficits in developing and maintaining relationships with other people (other than with caregivers), including lack of interest in others, difficulties responding to different social contexts, and difficulties in sharing imaginative play with others.

Sorry but we have too many HFA only and not adhd (and we tried stimulants to get better focus, attn, executive functioning Bf) to agree with your academic blip you posted.

Please don’t make claims on here based on pasted excerpts of DSM about emotional dysregulation not being associated with people who have autism. It is, whether a chronic symptom, a comorbidity or a secondary order condition.

It’s too easy to refute and no one is here to argue.

We’re all here to cope, get ideas, find better doctors and programs for our loved ones so they can reach a higher potential, maturity, and be more functional.

[Anonymous]

It’s both.

Adhd and asd have a lot of overlap of symptoms. Esp when an individual is stressed, and they are easily stressed if held accountable. In fact they spend more time and energy trying not to be accountable - for missing practice, forgetting something, misunderstanding - than the originally effort put in.

One can see how everyone gets upset.

[Anonymous]

Anonymous wrote: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.

I would hold off, especially if you’re going to get tested every 3-4 years.

Middle school is so different than k-5, so things can come to a head then. Or high school or in college. You never know, but be glad you’re semi on top of it and getting educated on helpful options.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

But outsized emotional reactions is not part of the key criteria for autism - although it may be a result. Emotional regulation is more hallmark of adhd. Autism dx requires:

Difficulties in social emotional reciprocity, including trouble with social approach, back and forth conversation, sharing interests with others, and expressing/understanding emotions.
Difficulties in nonverbal communication used for social interaction including abnormal eye-contact and body language and difficulty with understanding the use of nonverbal communication like facial expressions or gestures for communication.
Deficits in developing and maintaining relationships with other people (other than with caregivers), including lack of interest in others, difficulties responding to different social contexts, and difficulties in sharing imaginative play with others.

Sorry but we have too many HFA only and not adhd (and we tried stimulants to get better focus, attn, executive functioning Bf) to agree with your academic blip you posted.

Please don’t make claims on here based on pasted excerpts of DSM about emotional dysregulation not being associated with people who have autism. It is, whether a chronic symptom, a comorbidity or a secondary order condition.

It’s too easy to refute and no one is here to argue.

We’re all here to cope, get ideas, find better doctors and programs for our loved ones so they can reach a higher potential, maturity, and be more functional.

No one's saying it can't be a symptom but it is not diagnostic in and of itself.
It USED to be diagnostic of ADHD but the most recent DSMs removed it.
Currently lack of emotional regulation is not diagnostic of either disorder though many may experience it

[Anonymous]

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?

[Anonymous]

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.

[Anonymous]

Anonymous wrote: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.

I agree with you. Emotional regulation issues, low frustration tolerance and irritability are very, very commonly seen in ADHD.

[Anonymous]

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?

[Anonymous]

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*

[Anonymous]

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.

[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.

Does your daughter have adhd as well? I’m just curious because I think that’s where some of us are getting tripped up. The op describes the adhd diagnosis as feeling like a fit and the symptoms op describes match what I see in my child with adhd to a t. So I guess then the question is are those symptoms just related to adhd or a separate disorder of asd on top? If your daughter does not have adhd and those symptoms are driving the asd diagnosis it may be different if adhd is already a factor. Not sure if that makes any sense.

[Anonymous]

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