Diagnosis underwhelming

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After months of speculation, then tests, then waiting for the results for nearly 2 months...they came in the mail today. My son finally has his autism diagnosis, but the overall assessment lacks insight and isn't very descriptive at all. It didn't really contain anything I didn't already know. If there is any feeling about it at all, it's why in the world did I wait so impatiently, frustratedly...for this simple thing I already knew?

Even the recommendations for continued therapy...nothing seems helpful. What was the point? I guess I thought someone could offer insight or understand something that I couldn't.

I don't think it changes anything.

Does anyone else feel like this?

All the time (and my kids aren't even autistic). My son has ADHD; due to time constraints and the lack of anyone having anything really insightful to say, we have foregone therapy and medication and IEPs and 504s and the rest of it and decided to "deal with it ourselves."

So far, so good. His issues are pretty mild. I neither recommend nor disparage our approach; I simply note that it has, so far, worked for us.

I say my kids aren't autistic. It's true that none of them have a diagnosis. All 3 girls show some traits; DD4 might have enough traits to qualify for diagnosis. But, like you said-- Nobody seems to have anything insightful to say. Especially for kids at the "shallow end of the spectrum," a lot of therapy seems like a shot in the dark of questionable ethics. At this point, if she does turn out to have it, we are probably going to leave that unknown. If she ends up needing supports and differential discipline plans to get through school, we may end up pulling her out and looking into K12 or some other "outsourced homeschool" option.

When I received my written assessment, I was little let down. It appeared to hit every diagnostic touchstone one would expect, but little else. I had expected a mix of good and not-so-good descriptions, and some flattering facts to offset the five-page litany of unflattering facts. After I read it, I filed it away for a couple years before digging it out again just recently. While it still described me in one-dimensional ways, it did what it was supposed to do: note every single behavior, characteristic and comorbid diagnosis which I was observed to have to conclude my Autism Spectrum Disorder diagnosis.

Now, when I read my written assessment, I focus on the one or two unnecessarily kind descriptions about me. My diagnosticians weren't required to mention them, but they did anyway.

Hopefully, as more research is developed about us, diagnosticians will be able to include a more robust assessment with better after-the-fact advice.

Meanwhile, look for any silver lining you can.

I think some variation on this is extremely common.

Before the diagnosis it seems like such an important question and people often express this in inadvertently deceptive language: "It's important to get the diagnosis right so we can respond correctly."

The reality is that there is no correct response.

The diagnosis is nothing more than a recognition that the person meets the criteria for diagnosis but the etiology of the condition is unknown, there is a lot of confusion about key aspects of what having the diagnosis means for the individual (e.g., do autistic people have empathy?) and the needs of individuals on the spectrum are diverse and difficult to predict.

Mostly it means access to certain interventions which may be helpful in school. That's about it.

For parents trying to do the right thing by their kids, a little knowledge can be helpful/. It's good to be able to conceptually recognize that there is a difference between sheer bloody mindedness and perseveration, for example.

It's interesting, perhaps encouraging, to note how many things Temple Grandin's mom got right, despite a lack of "professional" guidance. Good luck. Loving your child and wanting to be as helpful as possible can only be good.