What to make of the diagnosis?

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Registered: 03-31-2003
What to make of the diagnosis?
9
Wed, 08-24-2005 - 3:10pm

I am not sure how many of you have gone through this feeling, but sometimes I just do not know what to think of Ian's "symptoms". In the 9 or so months since Ian was diagnosed with Austim, I have gone on a rollercoaster ride of emotions. A strange sort of relief that we caught his issues early, denial that something was wrong, acceptance of the accuracy of his diagnosis, questioning every action and improvement and what it means.

Here is the deal- Ian clearly struggles with social intereactions (unless they are on his own terms) and has a pronounced language delay. I realize that even with his explosion of words in the last 2 months, he is still primarily labeling things (just a lot more things) as opposed to really communicating a want, need, or feeling. These two things are typical of a kid with autism. But, since we have started therapy with him, the repetitive behaviors have almost entirely stopped (almost), and he does not seem to be struggling with sensory issues much any more, if at all. It makes me question if he is autistic or not. Maybe I question it because I do not want it to be true.... none of us want to worry about how our children will do in the future or in school socially. But I do not know where to look. I have bought books and done research on other speech issues...and every time I find a description that sounds like Ian the book mentions getting the child evaluated for autism. He does not meet the description of anything but autism in the social and speech issues he has.

Any thoughts on this? Is there any other disorder you think I should look at? Or am I just doing what all parents would do...hope that everything is just ok even when the signs are that something is wrong?

Avatar for betz67
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Registered: 03-26-2003
Wed, 08-24-2005 - 6:01pm

(((HUGS))) we all have gone through the rollercoaster of emotions that you speak of! My Dh and I are still working through the whole thing but pretty much getting "comfortable w/ our son's Dx and now we're just pushing for whatever will help him." We are VERY optimistic that he will just live a normal life and we'll be there every step of the way to help him do that. (but we're also pretty sure people will always look at him and think he's strange.)

You can and should continue to look for answers. Doing this kind of thing is what will help him get what he needs, but don't wear yourself out worrying about the Dx. Autism is such a HUGE spectrum that there are so many different symptoms and ways kids fit. Even if he does have a different Dx the therapies w/ autism will help! We've come to accept that our son is on that spectrum, that he has more severe sensory issues than lots of kids but is much more high functioning when it comes to interacting w/ other people. His speech is also in the high functioning area. Lots of people don't even know that he has autism. Lots of kids also move up and even sometimes off the spectrum w/ good early intervention.

Sometimes it just helps to know that other parents feel the same way!

Betsy

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Registered: 03-31-2003
Wed, 08-24-2005 - 6:52pm
Thanks Betsy. Sometimes I just need a reminder to focus on the therapy, not the diagnosis. I guess part of me keeps thinking that if I find a different diagnosis that he will suddenly be ok- LOL. I keep thinking I have come to accept what is, and then all the sudden I have to go through the whole acceptance phase again. *sigh*

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Registered: 03-26-2003
Wed, 08-24-2005 - 11:11pm

Yes, I think we all go through that roller coaster and kids will move up and down the spectrum from very high functioning, almost unrecognizable to severely and obviously autistic.

I am sorry, I don't remember how old Ian is. I am guessing young early intervention age. If that is the case you may see lots of changes and improvements but unfortunately I will say it will likely be a couple years before you know for certain if he is on the spectrum or not. But really the spectrum isn't that bad. If he is making that much progress it is likely that he will be quite high functioning.

There are many positives to autism as well. OK so this is a place we come to vent and probably don't spend enough on the positives in a place like this because this is the only place where everyone understands and it is safe to let loose. KWIM? But my own dd has made more progress then I ever thought possible when she was a toddler. Currently she is mainstreamed in all her academic classes. Tonight she wrote a 2 paragraph article on her own for english. Now granted it was about her obsession, but even a year ago I never thought that her writing an organized piece would ever happen.

My kids don't try to hurt others. They are not mean, manipulative, or sneaky. They are polite (except when overly honest or social inept, lol) There are so many kids in my kids grades that say and do hurtful things that would never enter my kids thoughts. I like them that way.

I am not blind I know it isn't an easy road, but it certainly is a special road. I don't like my kids having any hurt but if children with autism were meant to be born into the world, I am glad God blessed me with 2 of them. I have worked with autistics since before the kids were born. All levels of ability and all ages up to adult. Never before or since have I met a more interesting and incredible group of people then when I meet autistics.

Renee

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Registered: 03-31-2003
Thu, 08-25-2005 - 1:50pm
Renee-
That was such a nice post...sometimes I do forget to look on the bright side and how special my little guy actually is (he is 2 1/2 BTW). Thank you for reminding me. :)

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Registered: 05-30-2005
Thu, 08-25-2005 - 3:38pm
Hi -- I think everyone has given you great and sensitive responses so I won't repeat, but wanted to let you know that, yeah, I feel like that sometimes, too. Except for the speech delay, Calvin is so much like a typical 2 year old that sometimes I wonder if we are just overreacting. And I forget about the autism part for days at a time -- usually being at a play date or at the park will make it more clear, though. Like you said, it's a rollercoaster. I like what Renee said about looking at the bright side of what an autistic kid is like. Good one to remember.
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Registered: 03-27-2003
Thu, 08-25-2005 - 9:10pm

I've been questioning the diagnosis since they day we found out. Some days I feel so relieved and it seems to explain so much about his behaviors then on others I think, well he doesn't really have sensory issues, or he does look me in the eye. But from what I've learned so far it can be so different from person to person. Of course that actually can make me question the diagnosis further. For me I've decided to accept it as a diagnosis but in the same aspect know that it may be wrong but just watch what works and what doesn't work for him. I dont know it's not easy thats for sure!

Amanda

Avatar for cathby
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Registered: 05-16-2003
Thu, 08-25-2005 - 9:21pm

Hi,

My DS Jack (now just 4) was Ian's age when we started figuring stuff out. Kind of where you are now. And I had all the same emotions, too. I think it's completely normal. Trying to analyze and analyze again. Doubting, wondering, hoping, questioning.

It's tough with a 2-year old, because 2-year old boys are....2-year old boys. They can do all sorts of things and everyone just chalks it up to their age and gender. It gets a bit tougher when they are 4-years old, though. Behaviors and things become more...apparent that they are not age related.

Ian sounds like he is having a GREAT trajectory, though, and responding fabulously to therapy. I am really happy for you. I'd be very upbeat.

Cathy

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Registered: 03-26-2003
Thu, 08-25-2005 - 11:18pm

Ya know not long ago someone else asked me a similar question. Do you ever question the diagnosis. My answer now is No, I don't. But it wasn't always that way. In fact I would say up to about 7-8 I would go through periods of questioning the diagnosis. I think that is perfectly natural. It is hard to tell then what is appropriate for that age and what is different.

I have entered a new phase in life and this autism journey and in many ways it is much better. The diagnosis is no longer new and they are coming into thier own little people. They are no longer autism. I think when the diagnosis is new that is the first thing that enters our mind with every thing. Rather now they are Mike and Cait in their own way with thier own personality who also have autism spectrum disorders.

It becomes more apparent in ways as they get older I think. At least with my kids it has. Some of it is expectations when they are older are much different. So at 2 if they aren't making eye contact, well they are busy or interested in something else. At 11 it is a whole lot more noticible. Same with social skills, stimming, etc. Mike is much more "autistic" now than he was at 2. BUt as a family we are very accepting of the autism part. If they need to stim, no big deal. If they aren't comfortable with eye contact, I don't force it. I try to work with what they will need to learn to function independently and be happy. But as far as looking different, that doesn't bother me so I guess maybe my kids are more autistic cause I am ok with that part.

Also, as they get older stressors get bigger. For autistics stimming can relieve stress. Eye contact can cause extreme stress. Things that are outward signs of autism that are often what the society consider autistic behaviors aren't the core disabilities. I work on what is disabling for the kids and teach the world to be ok with autism.

Another thing that is nice as they get older is you definitely get a handle on thier strengths and what they can do. There is no more of that "will they be ok, will they be able to do this or that". No more rush to "fix" them. You have a pretty good handle on where they are on the spectrum by the time they are upper elementary and you know they are going to be ok in thier own way. And you start making plans for what that way will be. No more "will they go to college, will they get married". Maybe yes, maybe no. But I have a pretty good idea what thier adult needs will be and I have already started to plan for them.

I don't envy you. The beginning is the hardest. We are out of that beginning sprint and have entered the marathon easy paced jog now.

Renee

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Registered: 03-27-2003
Sat, 08-27-2005 - 11:57am

What is stimming? maybe a stupid question, but I never heard it before.