Just diagnosed ASD / ADHD : how/when to tell daughter

[Anonymous]

We just received our 8 year old daughter's diagnosis of ASD and ADHD. We would appreciate some guidance from parents who have been where we are now. How did you tell your kid about their diagnosis? Anything you would do differently? Thank you.

[Anonymous]

Our daughter was diagnosed with extreme ADHD, General Anxiety Disorder and Sensory Processing Disorder when she was 7. Now she's 8. She understands that everyone has strengths and weaknesses. She has accommodations within her classroom that help her control her need to run around, and help her stay on task. She sits on a wobbly seat, and squeezes a stress ball when she's anxious. The other kids in her class love to use her seat too. She is lucky to have a great teacher and extremely nice classmates. She has noticed lots of other kids who are also special in some way. One uses a bumpy cushion to help her sit still, two friends wear glasses. We give her tools she can use to help her through the day. Her hearing is sensitive so she wears sound blocking headphones in gym and other especially noisy classes. She can't handle the noise in the cafeteria, so she eats in the front office.

Your daughter is the same wonderful kid she was before the diagnosis. The diagnosis is a good thing because now you know how to help her. It just takes time, and she needs to trust your choices. She may have to spend time in different types of therapies. She may need a different school environment. Always stress the fact that changes are being made so she can be happier, learn better, and make friends. Although you may feel devastated, as I did,
don't let it show. She takes her cues from you. Good luck!

[Anonymous]

My DS was diagnosed ASD at age 11. He asked about what the testing showed and we carefully walked through things that are who he is in a positive way and then explained there was a name for it. I worried about how he would handle, but he found it empowering and relieving.

Your daughter may surprise you.

[Anonymous]

My daughter also has ASD/ADHD and is 9. We've talked to her freely and often about her strengths and challenges and why she takes the medications that she does. But we've never named either disorder; she has never asked and her dev ped thinks we should wait until she shows that she's ready to hear.

[Anonymous]

My oldest son was diagnosed with ADHD at 7. We talked about his strengths, challenges, meds, etc. But didn't name it for at least a year afterwards. He now feels proud of his diagnosis. One if his younger sibs got the same diagnosis. We planned on waiting with him as well, but older DS figured it out and told younger DS (who was thrilled to be like older brother)

[Anonymous]

I know the conventional wisdom now is to tell, but I haven't told my 11 yo ds and don't plan to. We do talk a great deal about strengths and weaknesses, learning styles, differences in how people perceive things, and he has a high degree of self awareness about who he is. I think for some kids this may be enough - to me, it feels similar to the way I have not disclosed "giftedness" to his sibling.

I know that for some people a dx of ASD is empowering because it explains their symptoms and life experiences so well. From experience reading and discussing books about characters with ASD with my son, it's clear to me that he doesn't see himself as having anything in common with them. He sees himself as "typical" which is interesting as he has a lot of challenges. But I'm not sure it would help to tell him differently.

I don't think ASD is quite like other disorders or a medical diagnosis, in the sense that the range of kids included is so broad and we haven't seen kids dx'd under the current criteria grow up, so we don't really know what adulthood looks like for them as ASD-identified people.

[Anonymous]

OP here- Thank you everyone for your advice. We currently talk about strengths/ differences, etc. She does feel different, and struggles greatly with social relationships. I guess I am debating the most with "to tell her or to wait", because I don't want her to hear it from someone else before we discuss it with her. For example - hear it at school from teachers, nurse, aide etc. perhaps discussing why she is melting down, etc. She hears everything - even from across a crowded room, and I would not want her to get the information that way. I would not want her to feel like we were hiding it from her.

[Anonymous]

My son has ASD and ADHD and we told him when he was diagnosed. The ASD, Asperger's when he was diagnosed at 4 and the ADHD, combined type, when he was diagnosed at 7. DS is 8 now and this is part of who he is just as much as the fact that he is really great at math and chess. His diagnosis isn't a big deal, it just "is" and something he has to live with.

It is helpful that the current world champion in chess, Magnus Carlsen, is suspected of having Asperger's too.

[Anonymous]

I'm the one with the 11 yo. There are some books about kids with autism (by Ann Martin, among others). You could read one together, start a conversation there and see if she seems interested or relates, and then take it from there.

I would also advise, if you tell her, leaving some wiggle room with the dx: "When we took you to see Dr. X, she thought you had Y. A lot of kids with Y have...." I would present it as a possibility that has validity but is not necessarily definitive or inarguable. These dxes are just meeting a set of criteria at a certain point in time - she can take from it what she wants and is ready for.

[Anonymous]

Anonymous wrote:My son has ASD and ADHD and we told him when he was diagnosed. The ASD, Asperger's when he was diagnosed at 4 and the ADHD, combined type, when he was diagnosed at 7. DS is 8 now and this is part of who he is just as much as the fact that he is really great at math and chess. His diagnosis isn't a big deal, it just "is" and something he has to live with.

It is helpful that the current world champion in chess, Magnus Carlsen, is suspected of having Asperger's too.

I should add that our whole family would qualify for either ASD, ADHD or both. Nevertheless, the adults are all Ivy educated professionals.

My niece who suffers from ADHD and an anxiety disorder and has an IEP just got accepted to Berkeley. There are so many more supports now... Even if you don't tell your daughter now, let her know at some point so she can advocate for herself and get the help and supports at school that she is entitled to.

[Anonymous]

Pardon my ignorance as I have a toddler who was just diagnosed with ASD, but how is it that children 8 and up are just being diagnosed. Were they able to go to regular schools? Did you know something was amiss but just waited to get a diagnosis? I just know that probably there is no way my kid will even go to mainstream schools... and the diagnosis was mild ASD.

[Anonymous]

Anonymous wrote:My daughter also has ASD/ADHD and is 9. We've talked to her freely and often about her strengths and challenges and why she takes the medications that she does. But we've never named either disorder; she has never asked and her dev ped thinks we should wait until she shows that she's ready to hear.

I think we were kind of the same - always open about it, but unintentionally never used the diagnoses. I believe it's important not to be in the closet about stuff like this because it makes it seem like there is something to be ashamed of. I think that was a mistake. When my son figured it out, it took awhile for him to be able to use the terminology even though he didn't have trouble talking about his strengths and challenges. I think I should have been more proactive.

[Anonymous]

I don't think ASD is quite like other disorders or a medical diagnosis, in the sense that the range of kids included is so broad and we haven't seen kids dx'd under the current criteria grow up, so we don't really know what adulthood looks like for them as ASD-identified people.

Are you talking about the criteria that has now grouped Aspergers/HFA with the other ASD? ASD has been around for a very long time and there are a very large number of adults that have acknowledged they have ASD (Temple Grandin, Dan Akyroyd, James Durbin, Darryl Hannah, Tim Burton, etc.) And, ASD is not the only 'spectrum' disorder. There are a large number of other disorders, including CP and ADHD, that you can't really predict what a child with them will 'look like' in adulthood. We do know they explain, but not excuse, may of the challenges our kids have.

[Anonymous]

Anonymous wrote:

I don't think ASD is quite like other disorders or a medical diagnosis, in the sense that the range of kids included is so broad and we haven't seen kids dx'd under the current criteria grow up, so we don't really know what adulthood looks like for them as ASD-identified people.

Are you talking about the criteria that has now grouped Aspergers/HFA with the other ASD? ASD has been around for a very long time and there are a very large number of adults that have acknowledged they have ASD (Temple Grandin, Dan Akyroyd, James Durbin, Darryl Hannah, Tim Burton, etc.) And, ASD is not the only 'spectrum' disorder. There are a large number of other disorders, including CP and ADHD, that you can't really predict what a child with them will 'look like' in adulthood. We do know they explain, but not excuse, may of the challenges our kids have.

Sure, classical autism has been around for a long time in a particular, narrow form. ASD, as currently diagnosed, really hasn't been around that long. For example, I have a sibling, born in the early 80s, who would clearly be dx'd with ASD if he were a child today (stims, social-pragmatic issues, repetitive behaviors, echolalia, intense and narrow interests, etc). At the time, though, his developmental pediatrician and multiple specialists regarded him as a "mystery" and he was diagnosed with a rare syndrome (which in time it became clear he did not have) and later, when that was ruled out, with mild mental retardation. ASD was never even in contention, because he was "too verbal" - i.e., he could speak. His friends/classmates were mostly children with borderline MR diagnoses (bordering on "normal" IQs) obvious social-pragmatic issues, poor eye contact, etc. They are grown up now, and they have a range of outcomes (living independently, living in supported environments, college-educated, etc), but none of them self-identify as ASD or have been diagnosed with ASD. And yet I think they are very much like what my own son and his cohort will be like when they are grown because they have what by today's lights would be ASD.

The kids I know who, like my son, were diagnosed with ASD as 3 yos are now about age 10-12. They could not be more wildly divergent in abilities and profiles. Some have outgrown any diagnoses, many have ADHD diagnoses instead of ASD diagnoses, or in addition, some have NVLDs or other LDs, a few fit the Asperger's profile or a classical autism profile. There is a huge range. It's not just that it's a spectrum, it's that it's so much of a spectrum that it's really hard to see what, if anything, was meaningful about the diagnosis, except that they, at 3, had some issues. Even in this very thread, a poster implies that her child with ASD will probably to to an Ivy League school and become a successful professional. If that is true, does that child really merit a full blown ASD diagnosis, just like child who will always need life skills help and supported living, and if so, what does ASD mean?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

I don't think ASD is quite like other disorders or a medical diagnosis, in the sense that the range of kids included is so broad and we haven't seen kids dx'd under the current criteria grow up, so we don't really know what adulthood looks like for them as ASD-identified people.

Are you talking about the criteria that has now grouped Aspergers/HFA with the other ASD? ASD has been around for a very long time and there are a very large number of adults that have acknowledged they have ASD (Temple Grandin, Dan Akyroyd, James Durbin, Darryl Hannah, Tim Burton, etc.) And, ASD is not the only 'spectrum' disorder. There are a large number of other disorders, including CP and ADHD, that you can't really predict what a child with them will 'look like' in adulthood. We do know they explain, but not excuse, may of the challenges our kids have.

Sure, classical autism has been around for a long time in a particular, narrow form. ASD, as currently diagnosed, really hasn't been around that long. For example, I have a sibling, born in the early 80s, who would clearly be dx'd with ASD if he were a child today (stims, social-pragmatic issues, repetitive behaviors, echolalia, intense and narrow interests, etc). At the time, though, his developmental pediatrician and multiple specialists regarded him as a "mystery" and he was diagnosed with a rare syndrome (which in time it became clear he did not have) and later, when that was ruled out, with mild mental retardation. ASD was never even in contention, because he was "too verbal" - i.e., he could speak. His friends/classmates were mostly children with borderline MR diagnoses (bordering on "normal" IQs) obvious social-pragmatic issues, poor eye contact, etc. They are grown up now, and they have a range of outcomes (living independently, living in supported environments, college-educated, etc), but none of them self-identify as ASD or have been diagnosed with ASD. And yet I think they are very much like what my own son and his cohort will be like when they are grown because they have what by today's lights would be ASD.

The kids I know who, like my son, were diagnosed with ASD as 3 yos are now about age 10-12. They could not be more wildly divergent in abilities and profiles. Some have outgrown any diagnoses, many have ADHD diagnoses instead of ASD diagnoses, or in addition, some have NVLDs or other LDs, a few fit the Asperger's profile or a classical autism profile. There is a huge range. It's not just that it's a spectrum, it's that it's so much of a spectrum that it's really hard to see what, if anything, was meaningful about the diagnosis, except that they, at 3, had some issues. Even in this very thread, a poster implies that her child with ASD will probably to to an Ivy League school and become a successful professional. If that is true, does that child really merit a full blown ASD diagnosis, just like child who will always need life skills help and supported living, and if so, what does ASD mean?

People are treating the symptoms and no one knows what the future holds with certainty. I am the poster whose family members went to an Ivy and became successful professions. DS has an ASD/ADHD diagnosis bc his school told us he needs an evaluation and that is why he has a diagnosis. Every eval he has ever had including a full neuropsych diagnosed ASD so DS merits a full ASD diagnosis whether or not anyone else thinks otherwise.