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diagnosis-just let me cry a bit


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#1 happysmileylady

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Posted 28 February 2017 - 11:06 PM

DD6 was officially diagnosed with ASD today.  Mild to Moderate is what they said.  Moderate stemming from her very serious language delay, mild stemming from mostly everything else....she has almost none of the hand gestures, none of the stereotypical behaviors, like rigid schedules, meltdowns over changes, etc.  She has some social issues that fall between the mild and moderate, but a lot of that stems from us just not putting the situations out there.  I described her softball issues in a previous post, but really there aren't a lot of opportunities available here.

 

Anyway.....this is what we suspected for a while.  But......it still sucks.  Part of the reason it sucks is that really, it provides a label for the delays she has, but doesn't really seem to provide any actual REASON for the delays, nor does it really describe what problems she might have in the future.  Mostly though, it just sucks. 

 

DD6 has never really regressed.  Like you think of kids who develop normally then start loosing words, losing the ability to interact, etc.  It's more like she just, paused.  Like, she hit a year old, and then just stopped, for about 18 months.  Then, picked up where she left off.  And it's always felt like, globally, she has progressed beyond that point, with always with that 1.5 to 2 yr lag. 

 

I will say, even though we suspected this, even though we don't necessarily disagree with this, ASD testing feels imprecise.  For example one of the questions on the survey that stands out to me was about being able to answer the phone.  Honestly, none of my younger three kids have ever answered the phone in their lives.  We have no home phone.  DH and I each have a cell with individual phone numbers and because the phone is right by me, I have never had reason nor opportunity to teach any of them to answer the phone.  When DD21 was a kid, I went through a lesson or so about answering the phone because we had a phone she had access to.  My younger kids don't have that opportunity.  Another question was about friendships.....my kids don't have much opportunity for "friendships."  Not because I keep them holed up in the house all the time.  But because, they are homeschooled, the kids around the neighborhood aren't from families that I am comfortable letting stay around, and we didn't sign any of the younger ones up for anything "extracurricular" until last year. 

 

 

Anyway, again, I don't disagree with the diagnosis.  It's been suspected.  It still makes me want to cry. 


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#2 applethyme

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Posted 28 February 2017 - 11:50 PM

:grouphug:  :grouphug:  :grouphug: 



#3 Storygirl

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Posted 01 March 2017 - 12:08 AM

:grouphug:

 

Hearing the diagnosis can hit hard, even if you are expecting it.



#4 OhElizabeth

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Posted 01 March 2017 - 09:37 AM

It's a hard thing. And I don't know if it makes you feel any better, but you're not crazy at thinking she is not like other kids. They've lumped all ASD into one in the DSM, but the research is showing up lots of subtypes. So you have kids getting there lots of ways. It sounds like she was just born that way. You didn't cause it or make it happen. She's not broken. She's just different.

 

I hope you get lots of hugs today and can focus on positive things. She's still all the good things you enjoyed about her. She's just a bit more now and you have a fuller picture.

 

Her prognosis is good. She has you and will mirror you, and the doors you open will be doors she goes through. The language stuff is treatable. Of all the stuff to have be more severe, that's a good one!  You can work on that and get some breakthroughs. And to have the other behaviors be level 1, that's really good too. It makes it more probable you can handle her at home.

 

What are your plans for the day? It's raining here. I can't remember what we did after our diagnosis. It was all sort of anti-climatic. In our state we have disability scholarships, so we moved right into advocacy and fighting for services. Is your family supportive? Do you have other kids you have to explain it to, or is she your oldest?

 

It's ok to grieve. It's a lot to process.



#5 Selkie

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Posted 01 March 2017 - 09:48 AM

:grouphug:  :grouphug:  :grouphug:



#6 Princess Ariel

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Posted 01 March 2017 - 11:10 AM

:grouphug:  :grouphug:  :grouphug:

 

I am sorry.  I know this might not seem helpful right now, but my dd wasn't diagnosed until she was 11.  And not because of our lack of early intervention and testing.  It just never really stood out enough, was actually immediately ruled out  until she developed extreme anxiety at age 10 and it was finally confirmed by another neuropsych eval. I often wonder if she'd be further ahead if she had had the services so many kids with that diagnosis get when they are much younger. There really is a lot out there for kids with ASD.  It's much harder to find things that fit when you have a teen (dd turning 16 this spring).

I really wish you all the best! :grouphug:


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#7 sbgrace

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Posted 01 March 2017 - 11:40 AM

:grouphug: It's a grief process for many,-even when the diagnosis isn't unexpected--it was for me as well. Actually, I had him re-evaluated by three places, though that last one was mostly for hubby's benefit.

 

Hopefully, the end, the diagnosis helps. It can open services, help you direct interventions more precisely, and, when she's older, give her a name for what makes her different if that's needed in the future.

 

But now you grieve. :grouphug:


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#8 Canadian Mom of 2

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Posted 01 March 2017 - 12:30 PM

:grouphug: :grouphug: :grouphug:

#9 Canadian Mom of 2

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Posted 01 March 2017 - 01:04 PM

We got a double whammy on the same day. Both our boys. In our case, I had been researching for a while so we had already dealt with it and were emotionally prepared.

One thing to remember, it is *never* to late. With proper help, they are finding these days, even adults are showing improvements. Your girl is only 6 and high functioning. She has a lot on her side!

A book suggestion, if you are up to it.

*The Way I See It* by Temple Grandin

#10 Kinsa

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Posted 01 March 2017 - 01:17 PM

"Part of the reason it sucks is that really, it provides a label for the delays she has, but doesn't really seem to provide any actual REASON for the delays, nor does it really describe what problems she might have in the future."

This has been my biggest struggle too. I can deal with the diagnosis, but I want to know WHY or HOW it happened. In our case, we have a mentally retarded son, yet dh holds six college degrees and I'm a former member of MENSA. There's just no reason it should've happened. The pregnancy and childbirth were both completely normal, and there's been no head trauma. I want to know WHY he's the way he is, but even though I've pursued the why, I've gotten nowhere. Doctors just shrug and say it's just one of those things. It's really frustrating.


Edited by Kinsa, 01 March 2017 - 05:37 PM.


#11 Canadian Mom of 2

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Posted 01 March 2017 - 01:46 PM

The Hidden Potential of Autistic Kids (Scientific American)
https://www.scientif...-autistic-kids/

#12 Crimson Wife

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Posted 01 March 2017 - 02:07 PM

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

 

With the language delay, I would STRONGLY encourage you to have both a regular audiology exam ASAP (unless you've had full booth testing within the past 12 months) and once your DD is old enough (usually 7 or 8), Central Auditory Processing Disorder testing. I learned the hard way that hearing difficulties can get chalked up to autism. Now that's not to say that the HFA diagnosis is wrong but if the child is having difficulty either hearing speech or processing it (or both), the autism can interfere with her ability to let people know.


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#13 kbutton

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Posted 01 March 2017 - 09:44 PM

Anyway.....this is what we suspected for a while.  But......it still sucks.  Part of the reason it sucks is that really, it provides a label for the delays she has, but doesn't really seem to provide any actual REASON for the delays, nor does it really describe what problems she might have in the future.  Mostly though, it just sucks. 

 

I will say, even though we suspected this, even though we don't necessarily disagree with this, ASD testing feels imprecise. 

 

Anyway, again, I don't disagree with the diagnosis.  It's been suspected.  It still makes me want to cry. 

 

:grouphug:

 

ASD is kind of a hard to pinpoint thing in some ways, but over time, I think it starts to be more familiar and helpful--like variations on a theme, and you can pick out what that theme is for your particular child.

 

It has really helped me to think about ASD as a global developmental thing rather than a step-by-step developmental thing. More like a different operating system (that is compatible with other operating systems with a little work). My son with ASD is not so much delayed across the board as there are quirks everywhere. I know that you have identified specific delays with language, but over time, it may be more "different" and less delayed.

 

It just helps me understand why ASD always feels so imprecise compared to a learning disorder.

 

It's pretty normal to feel like you are asking, "But what about this?" for a while. 


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#14 LEK

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Posted 02 March 2017 - 04:28 PM

:grouphug: :grouphug:

My now 5yo (then 4) got her official ASD diagnosis at the end of last year, we had suspected something was up right from birth and had been sure we were dealing with ASD since about 12 months, it was still tough to hear and there was still a grieving process.