Denial?

chardonnay24 · February 2014

My son recently received an ASD diagnosis and for some reason, I am now having trouble saying, "my kid is on the spectrum". I'm having trouble believing it. Even though I've suspected that things weren't quite right for the last 20 months of his life, and even though I've spent countless hours trying to convince myself and other people that it was NOT normal that he's aggressive, and has trouble with consequences, and still bolts into the street or jumps into the deep end of the pool, or runs at the hot stove, or doesn't play with other kids. That despite having a huge vocabulary, he still can't use pronouns correctly. That he has massive meltdowns or that we haven't been out to eat in almost a year because he can't handle it when his routine is off by just a little bit.

Despite all that, after the diagnosis, I've been doubting it. Like, maybe he's just spirited or intense. Maybe it's just SPD. Maybe it's ADHD. I have no idea why I'm doing this to myself. I guess it doesn't help that our dev. pedi thinks he's "perfectly typical" and our regular pedi is in the "maybe, maybe not" camp.

Anyway, is this normal? I feel like I'm maybe going through the stages of grief. I've been sad, I've been angry, I've been worried. Hopefully acceptance will come next. :-)

typeset · February 2014

Normal. Many people go through the stages of grief after receiving this Dx. Sometimes you cycle through them more than once. Hang in there.

thefuturemrskudla · February 2014

Who diagnosed him?

chardonnay24 · February 2014

The school district, when he aged out of EI.

lemen99 · February 2014

Hugs!

Assembly_Reqd · February 2014

As others have said this is perfectly normal in the Cycle of Grief. "Stages" is such a bad word. It implies that once you have moved to the next stage, the last one is over and you will never experience it again. So not true.

You don't have to say Autism until you are ready to say it.The other option is to get a second opinion and a full set of assessments done in the medical community. Your pedi is not one to make a call on this. The Dev Pedi I would believe a bit more, but if they didn't do any assessments and are working on an opinion based on a 40 minute appointment, then it is worthless without any data to back it up.

Hugs.

Princess_Lily · February 2014

Wait. If your dev pedi said "typical," why does your LO have an educational DX of ASD then? Did you provide to the school the dev pediatricians assessment findings?

thefuturemrskudla · February 2014

I suggest you revisit this with the developmental pedi.

kcisthebombdotcom · February 2014

Yep for sure. She scored as not autistic on my self reporting (though barely--Her score was right on the cusp) and even under distress her ADOS scores were borderline too. Her developmental pedi made it pretty crystal clear she wasn't fully convinced. It does fit her in so many ways so we mostly have embraced it. It's not like were delusional though and we believe the dx will magically go away in a few years and she'll be just fine--we realize she is not neurotypical and are making financial decisions on the idea she will need lifetime care. Her developmental pedi told us she was one of the most fascinating cases she's witnessed and likely will never fit into a perfect diagnostic box.

chardonnay24 · February 2014

Princess_Lily said:

Wait. If your dev pedi said "typical," why does your LO have an educational DX of ASD then? Did you provide to the school the dev pediatricians assessment findings?

We need a new developmental pedi. He doesn't take me seriously and spends less than 30 minutes with my kid at each appointment. When we saw him a few weeks ago, he administered a basic test (puzzles, stacking blocks, colors, etc) and hasn't done a full ASD evaluation. We do have one scheduled in July with a psych, dev. pedi, OT, and SLP. Our regular pedi sees things that the dev. pedi does not see, but isn't totally convinced that my kid isn't just really bright and a little quirky/sensitive/intense. He is also known in our area for having a very liberal "wait and see" approach with ASD kids.

The school's evaluation lasted several hours and consisted of several parent interviews, observation of him with peers (2 settings), and direct observation of him in the office. It was evident to them that he behaves differently (more typical) in a setting with adults than he does in a room full of children. The dev. pedi saw him in a one on one, very controlled setting with an unfamiliar adult, in which my kid generally excels. We have 3 children's hospitals in our city, one is not taking new patients for their dev. pedis and one has a wait list 18 months long. So we're kind of stuck with the guy we have right now, unfortunately.

bliss611 · February 2014

We got our sons' dx around the same time. I'm still working through sadness but I see denial creeping in. I have yet to tell our parents. When I was falling apart and crying, I kept thinking I'll tell our close family when I calm down enough to have the conversation. Now, I have calmed down and am not crying through it but can't get myself to tell anyone I want to tell.

CCinLove · February 2014

You sound totally normal to me. My son was diagnosed at 2.5, and we've only now begun to tell people outside of immediate family and my BFF (he's 5). I had a ton of doubts about the diagnosis, but now I accept it and have a better grasp on how Autism affects my son's life. I'm finally ready to talk about it, and I don't feel like any of us have an obligation to disclose anything unless it's in our children's benefit. My son is high functioning, so I imagine that there will always be people in his life that aren't aware of the diagnosis. Everyone is on a "need to know" basis, and most people just don't need to know.

The one thing I would do differently is seek out more parents of SN children earlier. It's been nice to talk to others who understand what it's like to deal with the disappointment, uncertainty, school issues, etc. I would have done that sooner if I could go back.

I still have doubts (largely fueled by people expressing that they don't believe it when I tell them), but I'm at the point where I don't really care if he's dealing with Autism or not. His IEP is designed to help him become the best person that he can be, and I'm not really concerned about the diagnosis as long as he's getting the intervention he needs. We can worry about that when he's 9 and has to be re-evaluated to keep receiving services for Autism through the school district.

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