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

[Anonymous]

Anonymous wrote: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.

Well, for us we were overseas and just returned to the USA. The country we were in did not have anyone qualified to test for ASD. She has been in mainstream classrooms her whole educational career, but she has struggled socially and with behavior. I am sure if we were here in the USA, she would have been diagnosed earlier. Yet, the spectrum is very broad now, so there are kids - especially some girls who may do well in school/ socially until 3rd grade or so, then the traits really emerge, and the differences become more obvious. Especially if they would have been categorized as Aspergers previously.

[Anonymous]

We've been knocking on doors to try to understand the meltdowns and poor relationships with teachers, and came back as ADHD with anxiety. We threw at it all the tools we had, and still are fighting for a solution. A new therapist just suggested we get a new test, which should include specific components for ASD... DD is 11, in 5th grade, mainstream, but with challenges.

I would venture to say that many of the "late diagnosis" were first treated as something else...

[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?

Until crystal balls are reliable, yes, those children do merit 'full blown ASD diagnosis'. I've got two kids with ASD and, looking back, it's rife within my family. What's been meaningful about the diagnosis is that it allows us some measure of reimbursement from our insurance company and access to school services/accommodations through an IEP. Lots of things change over time and just because symptoms wax/wane over time doesn't mean diagnosis or classification was incorrect or unmeaningful. I was born with red hair. Through the years, the color has dimmed and I have fewer red hairs and more white. At some point, I won't have any red hair and all my hair will be white. I could color my hair and present as a brunette or blonde. That doesn't mean I wasn't ever a red head, that my skin doesn't burn more easily than the average person or that I'm not a carrier of the red hair gene.

[Anonymous]

Anonymous wrote: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.

Every child is different. Some have minor deficits that don't show up until the demands at school get greater. In other cases, severe ADHD looks so much like mild ASD that it is hard to tell them apart. Don't assume that your child will never go to mainstream schools. With proper early interventions, many ASD kids are mainstreamed and go on to lead successful lives. They may never be the life of the party, but they have good jobs, a family and friends.

[Anonymous]

Anonymous wrote: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.

Our daughter has been diagnosed first with OCD, then with ADHD. She may have ASD as well, but professionals disagree about it. We told her about the first two, since there was no disagreement, but not the third. We have also told her that she has many challenges in her young life, but we will do everything we can to help her overcome them, and in the end it will make her a better person. This seemed to work well, she understands what she has and is even interested in learning more about it.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

Every child is different. Some have minor deficits that don't show up until the demands at school get greater. In other cases, severe ADHD looks so much like mild ASD that it is hard to tell them apart. Don't assume that your child will never go to mainstream schools. With proper early interventions, many ASD kids are mainstreamed and go on to lead successful lives. They may never be the life of the party, but they have good jobs, a family and friends.

In our case with DS with both ASD and ADHD, the mild ASD/Asperger's is much easier to live with than the moderate ADHD, combined type. I am not sure why people usually assume that ASD is always worse than ADHD.

[Anonymous]

I told my dd when we were going for testing what the testing was for and why. After she was diagnosed with ADHD, I told her about the diagnosis and what it meant. The psychologist who did the testing also advised us to be open with dd, and she explained to dd at the beginning of testing while we were all meeting together what they were testing for to our dd. I think it's important to share the diagnosis because your child feels like she is different but doesn't know why. This can cause low self esteem. If there is a reason why they are different that is not their fault, and if other famous people have the same diagnosis, it can be a big relief for your kid to hear that.

[Anonymous]

Here's an excerpt from an article on whether or not to tell your kid they have ADHD.

In a session with another kid, an eleven-year-old boy called Chad, we discovered that the reason he was struggling so much in school was because he also had AD/HD. But instead of his parents experiencing relief that there was a reason for his struggles, they expressed anxiety, and suggested that we didn’t tell him because it might hurt his already fragile self-esteem!
They thought that if he were to find out he had a neurological condition (a disorder!), then he’d feel even worse about himself.
These parents thought that their son couldn’t handle the news that he was different from the other kids in his class. In a sense, there’s a certain irony here, because I was sure Chad knew long before his parents ever did, that he was different. I said, “You think he doesn’t know he’s different? You think he’ll really be upset to discover there’s a legitimate reason why he struggles so much, and that it’s not just because he’s lazy or dumb or is some kind of moron?”
Many counselors will tell you how important it is to educate the family on AD/HD, and they’re absolutely correct—education is one of the cornerstones of successful treatment. But that also means educating the kid—especially the kid! After all, he’s the one who has to deal with his AD/HD twenty-four hours a day (okay, okay, I know you do, too!).

[Anonymous]

Ultimately the kid will also have to advocate for themselves, we found our child was relieved to know what was going on, the areas we needed to work on and how but eventually we will not be as actively involved in his life and he's going to need to know what to do and how to do it for himself. I believe in honesty - I also think some kids can handle the whole truth and others need an overview. Our kid does better when he knows what is going on, so that was the approach we took. We read books out loud to educate ourselves and him - and have been as open as possible to any questions he has. I don't want him to be ashamed I want him to flourish and feel confident.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

Every child is different. Some have minor deficits that don't show up until the demands at school get greater. In other cases, severe ADHD looks so much like mild ASD that it is hard to tell them apart. Don't assume that your child will never go to mainstream schools. With proper early interventions, many ASD kids are mainstreamed and go on to lead successful lives. They may never be the life of the party, but they have good jobs, a family and friends.

In our case with DS with both ASD and ADHD, the mild ASD/Asperger's is much easier to live with than the moderate ADHD, combined type. I am not sure why people usually assume that ASD is always worse than ADHD.

They don't. And it is why some of us do find it frustrating when we have a hard time qualifying for Child Find and related services/preschools and not getting ABA covered.

[Anonymous]

Anonymous wrote:

Anonymous wrote: severe ADHD looks so much like mild ASD that it is hard to tell them apart.

They don't. And it is why some of us do find it frustrating when we have a hard time qualifying for Child Find and related services/preschools and not getting ABA covered.

Tell that to all the professionals who can't agree on what DD has, except that she is "complicated." Also tell that to that validated instruments for ASD diagnosis when different observers fill them out and get widely varying results.

And the difficulty of getting services isn't about diagnostic problems, it's really about service agencies and insurance companies trying to save money.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: severe ADHD looks so much like mild ASD that it is hard to tell them apart.

They don't. And it is why some of us do find it frustrating when we have a hard time qualifying for Child Find and related services/preschools and not getting ABA covered.

Tell that to all the professionals who can't agree on what DD has, except that she is "complicated." Also tell that to that validated instruments for ASD diagnosis when different observers fill them out and get widely varying results.

And the difficulty of getting services isn't about diagnostic problems, it's really about service agencies and insurance companies trying to save money.

Oh, I totally agree. Also, the problem is that the diagnosis becomes this all important thing. Like, we must diagnose! But then therapy sometimes does not get started correctly or timely. It is SO frustrating. My child is also "complicated."