what did/ does a diagnosis of autism mean to you..?

Denise - posted on 01/09/2013 ( 3 moms have responded )

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I am trying to prepare myself. We made it through day 1 of Ella's diagnostic and pretty much all of the specialists today had the same things to say:

1) it is VERY likely she is on the spectrum somewhere
2) she is likely pretty high functioning
3) therefore her prognosis will be "good"
4) but she is still likely going to get the diagnosis tomorrow...

So I am wondering if anyone out there has any thoughts on what that diagnosis means or meant when you got it... I feel sort of out of my det=pth trying to understand what it will mean for her in the big picture and really when I try looking stuff up OF COURSE the night before the diagnosis is given all I find are the hard stories that are bringing me to tears..

So while I am not saying that all I want to hear is the positive stuff i am just wondering if anyone out there has some small things that they learnt going through the process...

I guess I am just feeling really alone....and scared for her.. even though I keep telling myself its not like tomorrow they wave a wand and suddenly everything she is-- the sweet, focused and driven little girl I adore goes away.. its hard not feeling like somewhere in there they ARE going to take a part of that away... that there are a lot of things that will not happen/be the same for her as for other kids, including her sister...

arg..

crying...

maybe I need to just log off and stop thinking?

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Misty - posted on 01/10/2013

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*hugs* I so know what you mean and where you are....both of my kids are on the spectrum and while it's hard to hear the words, it was (for us) a sense of relief that some of the 'odd' behaviours had an explanation... our son was diagnosed on Oct. 10th, 2010 and our daughter diagnosed on Dec.4, 2011....it seems funny to know that, but for me it's almost like a birthday where I was handed a new outlook on my children...the gift of an answer...it was their 'answer day' where they were given their very own 'special word'....they know their diagnosis and are proud of it...maybe I'm doing it wrong or I'm weird, but I never wanted them to be afraid of their 'special word' and to never let it hold them back... they are still expected and taught to be respectful, responsible, caring people and we tailor our requests and expectations to meet their abilities.... Your sweet girl will not magically change over a word that explains some of what she does...it just explains her a bit better so you can understand her a little more... furthermore, your daughter isn't broken in some way...she is perfection as she is...a beautiful, wonderful, amazing child who has the world open to her and this new diagnosis will open up the possibility of a little more support for her and your family as you help her to explore her world and reach every potential that is within her....there are many very successful people on the spectrum and someday your daughter and my two might very well do as well or better....maybe I spend too much time looking for the smiles in the day and the progresses, but I prefer to do that rather than dwell on and worry about the things that have gone wrong....if you are positive and ok, then so will she...my only advice is to take the day tomorrow and think about what is said, don't worry about the future because today is what matters, hug your daughter and love her up, you know her the best and that sweet loving girl of yours will not change suddenly over a word.... *hugs* all the best tomorrow and remember that you are absolutely not alone

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Misty - posted on 01/11/2013

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I'm so glad I could help a little and that you have your answer. It sounds like they are giving you a great team of people to work with who can help your sweet girl to navigate the world a little easier. I think they are right that what you've done instinctively as parents has totally put her on a path to being very successful. It is heartbreaking to know that our kids will always be different in ways that cause them to struggle, but with a set of parents like you your daughter is going to fly through and be just fine no matter what she faces...Happy Answer Day to you and your family and all the best on this new path where your sweet girl will show you how she can shine ;)

Denise - posted on 01/11/2013

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Thank you for the response it was totally what I needed to hear-- we did get a diagnosis of autism but I like the idea of looking at it like a birthday in the sense of starting over with some answers, resources...direction. Honestly it was weird though, they told us "she has autism" and that didn't sting, but went on tosay because she is starting out with a delay (she has a communication delay which she has been just CRUSHING these last few monthes) that she will likely never be at a point where her progress "meets up" with others her own age... that was devestating and hard to swallow. Thankfully they gave us all the information, the report etc to go over and so once we'd had some time we read through it and got a clearer understanding of what they were saying... and while its still not easy to hear she will have an area in which she always has a "difference" in, they were not saying that she was cognitively never going to catch up... more that her social skills and possibly her language would always be awkward... They did not give us much as to sort of where on the spectrum she is, or at least not stuff *I* understand but I know its not all black and white and that likely its the kind of stuff they will talk more in depth about as we move forward on the new path.. she was SUCH a little trooper, and she is so strong that I can't help but feel like she will come through this ok.. now I just wish there wasn't SO MUCH info out there to try and wade through and find things that work with *her* diagnosis... but we are going to be assigned an autism doctor and then also have a sort of "team" we have access to as we need them, social worker, etc.... I think I might still be a little in shock... but hearing your story and the idea of looking at it as a beginning, a birthday, made perfect sense and I even passed that on to my hubby...its not going to help us right now to feel like its an END to something.. she is still the same beautiful child, like you said... now there are just some answers as to some of the quirks and things that will hopefully help us to make things easier for her and help her on with a great quality of life which is good to hear.. Also the team there at the diagnostic said they had to comment on how calm she is as a default ( she sometimes has "meltdowns" that can be triggered by sensory overload...but generally she is a happy, energetic little monkey even if she is also a VERY independent little girl and can be hard to engage)... they said they had seen many kids with the same "symptomology" as Ella but that she was very remarkably calm and "peaceful" that was really great to hear that maybe we are on the right track with what we have been doing as well.

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