I feel conflicted. Any insight?

kcisthebombdotcom

So not surprisingly based on our slightly traumatic ADOS experience, dd qualified as being on spectrum. If it were a year ago she would have qualified for a pdd-nos diagnosis but with the new diagnostic criteria everything falls under ASD. Initially the neurodevelopmental pedi mentioned she was going to go over the observations made during the testing and I made a comment about what a bad experience it was because of the unbearable heat in the room and the long wait.The neurodevelopmental pedi said that if it were not a good glimpse of her normal behavior and play we might want to reconsider redoing the test and before I could say yes dh kicked my leg and shushed me. The doctor said "you should listen to your husband because this diagnosis is going to open lots of doors for you". I agreed in the moment but second guessed the decision shortly afterwards. We went out to dinner and I asked dh if he thought we should get a second opinion or ask for her to be retested at her six month follow up. He said absolutely not, what's the benefit of that? I said it would be nice to know for sure what were dealing with to which he responded "that would be for your benefit, not dd. this diagnosis will help us get her more help so we should stick with it". Any thoughts on this? I'm leaning towards agreeing with dh but wanted to see if there was anything I wasn't considering.

kcisthebombdotcom

-auntie- said:

Team DH. 

I do get where you're coming from. It's pretty typical of parents of kids with atypical or subtle presentations of ASD to fall into a denial mode where they glom onto reasons why the dx might be inappropriate or an over-reaction. 

I always focused on DS's ridiculous expressive language, rote memory and unusual degree of emotional attachment to me. Add in the fact that he was an only with no regular exposure to peers until age 4 and it was easier to understand his social difficulties in that context than ASD given his strengths. It took me a little over a year post dx to truly believe it was an appropriate one for DS.

She'll be who she is. Services can help her be her best self. If the dx is wrong, that'll be evident as she gets older but she'll still have gotten help around those areas where she is different enough to trigger the dx now. If the dx is correct, you won't hate yourself for pissing away precious time and resources while coming to terms with the dx. 

I really don't think it's denial on my part. I've been fighting for a year for doctors to take my concerns seriously. From my two past visits with the neurodevelopmental pedi I've gotten the distinct impression she's putting a label there just for the sake of having a label. When she's going on and on how I shouldn't be too concerned about it, she considers her prognosis to be excellent, don't be surprised if she loses the diagnosis in a year or two, etc. it's not really selling me on this being it, Kwim? I do agree though--rather treat her now than look back in two years saying damn we wasted two years of precious time.

kcisthebombdotcom

Oh, and based on all that dh thinks autism is nbd and something with therapy just goes away. Sigh.

pastalady

We had to fight for 2 years to get a diagnosis too. When we finally got it, on one hand I was relieved on the other I was surprised and went into denial. The denial was a good year of no, she cannot have autism. She loves people, she is social, she is so bright. When we started therapy and I I saw so many improvements it was great. I will say therapists will also point out things that are not typical that I thought were. So, again, on one hand we saw great strides, on the other it felt like a slap every time a therapists would say they noted something atypical. I will say it wasn't until DD turned 4 when I feel I really saw more of a difference with her and her peers. So give it time. Maybe the diagnosis isn't correct. But the worst thing is you got extra help right?

pastalady

Oh and we are still told DD could lose the diagnosis. I hate that. It gives me false hope and doesn't help.

kcisthebombdotcom

pastalady said:

Oh and we are still told DD could lose the diagnosis. I hate that. It gives me false hope and doesn't help.

See for me the potential to lose the diagnosis doesn't really give me false hope. We know dd isn't nt and is never going to be nt. We know whatever the underlying cause of her issues is a permanent condition she'll have forever so whether its adhd or asd or a social anxiety disorder coupled with a language disorder or something else entirely--we know shes not going to wake up and magically be nt. if we lose the dx it will be replaced with something else--not that shes been magically cured. i just want the right diagnosis and its frustrating to me that the info in the ADOS report wasn't consistent with her typical behavior. Funny enough the typical red flag signs that I feel she presents with weren't even included. I know that whatever the dx is were getting help for the areas dd is deficient in and that's all that really matters. The not knowing thing is tough though I realize that thinking doesn't help dd at all.

pastalady

I totally get what you are saying. We still have issues with DD our team doesn't see, and they will find issues and things I don't agree are even issues lol! For us, it's like we get told all the time, she will be fine in school, she will live alone, she will have a career. I want to ask why we have 40 hours of therapy a week then right? I also think girls are so good at flying under the radar. I know we will most likely see a bigger gap as she ages. But I feel positive all the therapy is going to help her be her best version of herself she can be. She needs to learn how to function in a neurotrophic all world. Just wait until you start receiving the help and therapy. Even of it's not the exact correct diagnosis it will help. DD's speech and team are great at tailoring towards her needs, not a blank ASD diagnosis. Good luck, I am sure your little girl will do great!

A2TP

My son is in a similar boat. He was diagnosed first by the school district and then by a private neuro.

The school district did the autism eval at our request but said they would not have seen enough red flags in the rest of their eval to warrant it otherwise (he had a speech delay, which was our other/related reason for calling). In the end he barely qualified, but squeaked in on the ADOS-2 and I can't recall off the top of my head what other scales they used.

The private eval also agreed that he qualified based on scales but it might not be a lasting diagnosis. She suggested he may eventually be rediagnosed as ADHD and speech delay, for example. That is sort of the "flavor" of his issues.

While we were waiting for the private eval we were actually afraid that he would not get the medical diagnosis. An ASD diagnosis opens up SO MUCH in terms of insurance coverage for us. And regardless of what he actually has going on, he needs some extra help and ASD services can provide the help he needs. We have three kids (including another with some minor special needs) and no way are we in a position to pay out of pocket for all the services he receives.

The way I see it, our kids are young and their diagnoses haven't shaken out yet, but in the interim an ASD diagnosis is a tool for accessing services.

kcisthebombdotcom

pastalady said:

I totally get what you are saying. We still have issues with DD our team doesn't see, and they will find issues and things I don't agree are even issues lol! For us, it's like we get told all the time, she will be fine in school, she will live alone, she will have a career. I want to ask why we have 40 hours of therapy a week then right? I also think girls are so good at flying under the radar. I know we will most likely see a bigger gap as she ages. But I feel positive all the therapy is going to help her be her best version of herself she can be. She needs to learn how to function in a neurotrophic all world. Just wait until you start receiving the help and therapy. Even of it's not the exact correct diagnosis it will help. DD's speech and team are great at tailoring towards her needs, not a blank ASD diagnosis. Good luck, I am sure your little girl will do great!

We've been doing therapy since she was 17 months (the language delay has been a blessing of sorts) and she's come so, so far. She went from walking around mouthing inanimate objects as her form of play when she wasn't snuggled on my lap and cried when people tried to talk to her to this kiddo that loves playing dolls and dress up and is engaged and affectionate with familiar people. I can only imagine when she's getting intensive therapy 12.5 hours a week vs the 4 hours were currently getting through ei how much she's going to grow. I'm so nervous but so excited.