New diagnosis - normal to doubt it?

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Hello everyone. So, this might be long, but I'll try to reel in my thoughts:

Our 7 year old (he'll be 8 in January) son has always been "quirky." We absolutely love that about him. He'd do something (like, after getting to a store that was 40 minutes away, announce as we arrive that he forgot to put shoes on) and we'd laugh it off as "just J being J". However, in May of this year - at the very end of the school year - I began to hear J saying that the other kids in his class were annoyed with him for not following directions, he would say he "cant understand" directions his teacher would give and that people "talk to fast" for him. He started performing poorly on dictation tests in class and I also noticed he would ask us to repeat things a lot at home. Coupled with sensitivity to sounds, I thought we might be dealing with some auditory processing issues. Brought it up to teacher and she said that she never noticed but that J did mention that he "doesnt remember things he reads". She also said that her class is very structured so it was possible that J had just adapted and memorized the routine, hence showing no processing issues. That said, she directed me to Special Ed to ask for an eval to be done if I was worried. Special Ed told me that, since it was already May to hold off and see how next school year goes. Stupidly, I did just that.

The summer brought new concerns. We couldnt get him to go outside and play because of intense fear of bees, obsessing about asteroids coming made him cover his ears and tense at every low-flying plane, and we started to pick up on the fact that once he had an idea in his head he was relentless about it. Relentless. If we said we MAY go to the park later he would ask when we were going to the park ever 10 minutes. If things happened and we couldnt go after all, he would have a meltdown (which consists of him yelling a "rawr" sound repeatedly with eyes squeezed shut). We also started noticing an attention issue.

September came and I sent his new teacher a note to be on the lookout for any attention issues or anything "that seems off". We had also made an appointment with his pediatrician for the beginning of October to discuss our concerns and I wanted to have any input from her, if warranted. She wrote back that his attention seemed fine, that he did need some redirecting at times but it had not gotten to a point where it had effected his work - granted we were just a few weeks into the school year.

We went to the pediatrician with all of our above concerns. After listening to us and J for a short time he referred us to have a neuropsych evaluation. We made the appointment for as soon as we could, but ended up having to wait 3 weeks. In the interim, we began to hear from J that he "walks around recess alone" and when asked why he told us that he has a game he made up (that basically involves holding a stuffed animal above your head and running around in "crazy mode or silent mode") and no one wants to play his game so he just decided to walk around alone - or sometimes play the game by himself. He had no interest in joining the other kids games or playing on the equipment because "its the ladder kind of monkey bars and I dont like those because I can fall through them." There were other episodes where he had a playdate at our house and spent the entire time trying to convince his friend that they should go play video games (something he does incessantly) vs playing in his room with toys (something he never ever does) or the time when he got off the bus and ran after his friend (also in 2nd grade) yelling "Hug! Hug!" and even when shrugged off didnt understand that it was an uncomfortable situation. Things like that started making me wonder if there was something else we weren't seeing. I was talking to a woman one day and discussing this and she asked me if I'd ever heard of Aspergers. I had but had no idea what it really was. After doing minimal research, I had a gut feeling that we would be seeing a lot of that word in our future. Most everything fit.

Fast forward to our neuropsych eval appointment: It was this past Wednesday. J had three hours of testing (and lots of questionnaires for me). After it was done, the doc asked if I could have my husband come back with me (without J) in a few hours to discuss. We did just that and we were given the diagnosis of ASD with anxiety and ADHD. He clarified that under old guidelines it would be "high functioning" and not Aspergers because J did and does have a slight language delay (three is "free", for example), but that nowadays its all ASD. He also said he is very bright (avg to above).

Phew. That book written... I just wanted to ask if questioning or doubting is a typical response at one point or another for parents. It doesnt help that family members question the diagnosis and I'm a worrier by nature. LOL. I know I sort of saw it coming but there have been "good days" since diagnosis and I wonder if we"re jumping the gun/need a second opinion, etc.

Anyhow, thank you for listening and welcoming me.

Hi! I've just gone through a similar situation with my 8year old son, and though it was a relief more that doubt of the diagnosis, I went through most of the other stages of grief over it, not so much anger, but I'm sure it was there with the guilt of not doing anything sooner. I know things are different here in Australia but we've got a great amount of support for early diagnosis, but even at his age they're really on it at school and having a diagnosis (for us) is a big positive, teachers are more understanding, he's seeing the OT and speech therapist to learn the social skills and help with the anxiety that he probably would have muddled through feeling awkward otherwise. I now see more of who my boy is

Your son sounds a lot like mine , though yours sounds more social. My son is 8 and got an HFA diagnosis in pre-k, but probably could have gotten one earlier for a variety of reasons.

It sounds like there is a good deal of information supporting your son's diagnosis but you know him best. What are your specific doubts and what data do you think supports something else?

It is not unusual to doubt, b/c it is human nature to want to think everything is "fine" and there is so much negative talk about ASD out there. The thing is, your kid is not suddenly broken. He still is great. You just have a shortcut word to describe what is going on get him help when and if he needs it. So the best thing to do is try to look at it logically without too much emotion clouding your mind.

As far as the peanut gallery goes, that is common too. There seems to be something in the hive mind that makes family and friends think they are helping by telling you that you are crazy and wrong. You know, so everything is OK. It can be a PITA. Assuming you end up concurring with the diagnosis, some might come around, some won't. Either way you have to do what is best for your immediate family and your child.

I think it is normal to doubt the dx. In our case, I was confused because my son was inconsistent. At times he was had ASD traits, and other times he didn't. How could he have a pervasive syndrome if he didn't always appear to have it. As I learned about ASD (mostly via WrongPlanet) I could see that he was far worse when he was irritated. Eliminating certain foods, especially oats, made him much more consistent and calm. He still thinks very differently than other kids, and he receives pragmatic speech therapy for this. This different thinking is the underlying indication of ASD.

One problem is that each ASD kid presents differently, so you need to lots of examples to see that your son may fit the dx. Keep reading and observing and you will understand your boy better. Having a dx will help focus your attention. If it isn't right, you will know in due time.

Sounds a lot like my kid-- and yes, it's normal to doubt it.

I got to skip the doubt with my kid-- I've been pretty sure since he became verbal somewhere around 2 1/2-- but I did all my doubting back when I got informally diagnosed (back in '98). Now-- I go back and forth on what I think is "up" with my guy. ASD? ADHD?? Both??? SPD with anxiety???? Spoiled brat syndrome?????

I get nothing but doubt from relatives (including Daddy). Which makes it extremely hard to trust yourself, and is the #1 reason that I'm gathering data and making a case to haul mine to the pediatric neuropsych.

Don't feel bad for it being "this long." He's still just a little guy. It's not unusual to not pick it up until they're 7 or so, especially when the problems are minimal (which it sounds like yours are). Good grief-- my kid is almost 6 1/2. I'm educated-- very educated, having spent 15 years now looking at Asperger's in myself and reading whatever was available. And I couldn't prove it and couldn't be sure.

Skepticism, if you want my opinion, will serve you well. Don't refuse to act because of it, but don't throw it out the window either. Being totally non-skeptical, in the field of ASD kids, is dangerous-- and I think that being treated more or less like regular kids with varying degrees of quirks and different ways of getting to and going about stuff might actually be good for 'em anyway. God knows people keep asking me how I got such a great outcome as an undiagnosed ASD kid-- well, most of the people they really need to ask that question of are dead or senile now, but I suspect it had a lot to do with treating me as A) an individual, and B) a regular kid really.

Before I knew my son was on the spectrum, I thought he had like a personality disorder because he was 2 different kids on one body. He had times where he was the most rational, smart, caring, you could get thru to him, he understood, he was easy going etc...and then there were the OTHR times. Those times he was irrational, overstimulated, melting down, unreasonable, wanting everything his way, fixated, etc...

I didn't understand but I do now. It has all to do with setting, stress level, stimulation level, etc. My son in the best of situations can appear fairly typical. But he always had and has that other side, and now I know but back then it was an enigma.


My son is also on the high functioning end of the spectrum!

good luck!

I did not just doubt it, I was convinced it was wrong. I was still convinced it was wrong with a second opinion, though I was now shaken. I did respect the doctor's credentials enough to read Tony Attwood's book.

Then I began to doubt my rejection of the diagnosis, and also to see the ways the patterns being described not only fit my son but also me.

The upheaval of the DSM changes and continuous news of discoveries by autism researchers suggests that the definitions and understanding of the neurological patterns currently known as ASD will continue to change, so accepting or recognizing the truth of the diagnosis may not be the sort of definitive state or end of a process that it seems.

What I found is this: we are who we are, labels or no. If the label provides helpful intervention and a meaningful framework for comprehension of the thing, then it's good. If it is somehow hindering or negative, then you need to work around the conflict. Is it the wrong diagnosis? Is the knowledge it brings being employed helpfully by teachers and caregivers?