Is it too late for a diagnosis?

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glitzgirlsmom
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30 Oct 2012, 3:09 pm

My daughter is 11.

Autism was first suggested for her when she was 6 months old because of her not wanting to be held. The Dr said she would have to be evaluated when she was older.

Our insurance changed and she had to go to a new Dr. That Dr helped me get her into 1st steps at 1 1/2. She was seriously delayed in cognitive, social and language development and significantly delayed in fine and gross motor development. Again Autism was suspected.

She was in therapy from 1 1/2 to 3 with first steps. Around 3 she started talking finally. She went to a new therapist at 3 because she graduated out of first steps. The Dr wanted her to go to the autism center but they didn't take her insurance.

When she graduated out of first steps the school did an evaluation and said she wasn't autistic or aspergers. Everyone was floored. The new therapist decided that it was so clear my child was either autistic or aspergers she considered her as such.

She was in therapy off and on till 7. At 9 her father committed suicide and she was back in therapy. She stayed in therapy till 10. Both times I was told she seems to have autistic traits. Both times therapy brought her farther than they expected.

I sort of felt that there was no reason to discount the school's evaluation but it was clear the therapists did. I felt confused. I look at the diagnostic criteria and she is close to that but not quite now but when she was little that was completely her.

However now she has the background of almost 7 years of therapy in 12 years of life helping her to adapt/hide her autistic traits.

The reasons I have had trouble with the school's evaluation are:

1. Several Drs and Therapists have felt/mentioned my daughter seems autistic and needed a new evaluation but insurance wouldn't pay for one back then because of the school's evaluation.

2. After the time period passed for me to appeal the evaluation some things came out about my son's school evaluation that caused me to second guess the school. My son was evaluated by the school and they said he did not have ADHD or any other learning disability. He has been told 3 times now he has ADHD and 3 other evaluations have said he has dyslexia. Even with documentation of these things the school stood by their evaluation and insist my son is just not motivated that he does not have dyslexia. His last evaluation was by a school that only deals with dyslexia. I asked if maybe my son was not a typical case and that is how the school missed it. NOPE they said my son is a text book case of dyslexia. So I took that report to the school and they still insisted he was not dyslexic. That made me question their evaluation of my daughter. Then I found out that they deny she has sensory integration disorder as well which is clearly diagnosed and there is no question in my mind of.

I have debated trying to get a new evaluation for my daughter. I just worry that thanks to all the therapy she won't show the things that she has overcome.

For example. She used to show no emotion on her face. Now she struggles with is but she shows when she is happy and sad. She smiles.

She used to never use eye to eye contact and now I have taught her to look at someone's nose so they think she is looking at their eyes.

Now she has a few peer relationships.

She was non communicative till about 2 and non verbal till 3. She didn't even grunt or point. She would get aggressive that I didn't give her what she wanted. I had to pretty much read her mind to know what she wanted. However now she is very articulate.

She has never and still does not engage in imaginative play.

She used to rock but no longer does that unless really upset.

Is it possible to have an evaluation take into account how she used to be?



antifeministfrills
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30 Oct 2012, 3:14 pm

I didn't read all your post, but 11 isn't too late at all. Many people on this forum were diagnosed later.



ConfusedNewb
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30 Oct 2012, 3:26 pm

I would get it done while she is still a child. I dont know where you are from but here in the UK there is no funding for adults so you would have to go private and it costs about £300 just for diagnosis, then there is very little help after that.

So if you want a dsiagnosis get it now :) Good luck x



momsparky
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30 Oct 2012, 3:28 pm

I'm still hoping that someday I will find somebody to give me an appropriate diagnosis, and I'm in my fourties! The real issue is to find the gaps where your daughter needs services and get those filled - the label matters only as an avenue for that.

Good luck! One thing I learned - keep looking until you find the help you need! DS wasn't properly diagnosed until age 10, but the leaps he's made since then with appropriate supports and therapy have been amazing.



antifeministfrills
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30 Oct 2012, 3:35 pm

ConfusedNewb wrote:
I would get it done while she is still a child. I dont know where you are from but here in the UK there is no funding for adults so you would have to go private and it costs about £300 just for diagnosis, then there is very little help after that.

So if you want a dsiagnosis get it now :) Good luck x


I thought if you got referred to a clinic then it was free?



ConfusedNewb
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30 Oct 2012, 3:43 pm

My husband just tried to get diagnosed and he was basically told theres nothing they could do by our GP! They looked into it for him but the outcome was that he would need to go private, his insurance didnt cover it so he has just left it. He doesnt have a lot of problems but it would have helped our daughter and our families denial if he could have had it formally diagnosed.

glitzgirlsmom - just read the full post, sound slike your daughter has had a really hard time :( And you too of course. If you think a formal diagnosis is what you both need then get it done if you can x



eric76
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30 Oct 2012, 4:34 pm

I tend to view psychologists in public schools as being not much different from the "psychologist" at Macy's in the movie Miracle on 34th Street.



animalcrackers
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30 Oct 2012, 6:03 pm

People are diagnosed at all ages -- for older children, adolescents, and adults being assessed for ASD any competent clinician would take into account what the person was like in early childhood.


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lady_katie
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30 Oct 2012, 6:17 pm

Well, I'm 28 and I just got diagnosed last week, for what that's worth.



Heidi80
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31 Oct 2012, 7:45 am

I was dxed at 21



Mummy_of_Peanut
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31 Oct 2012, 7:56 am

ConfusedNewb wrote:
My husband just tried to get diagnosed and he was basically told theres nothing they could do by our GP! They looked into it for him but the outcome was that he would need to go private, his insurance didnt cover it so he has just left it
My friend is getting tested just now for possible Aspergers. It might depend on the health board area.


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31 Oct 2012, 8:04 am

When someone on the Autism spectrum, it is not completely a yes/no diagnosis. It is a spectrum as you seem fully aware. Unfortunately many others who read these reports and make decisions are not. When a child is on the cusp between being on/off the spectrum then changes in life can make the symptoms swing one way or another. These changes can be like developmental jumps, therapy, learning new skills that make them seem more NT, or they may be entering a new developmental stage where their deficiencies are more prominant, stress in life, hormones from adolescence, more demands/expectations because of their age make them seem more autistic. So, a good evaluation will take this into account, what is the history, what have they learned in therapy, what is happening in life. There seems to be a common pattern that can happen with some people.... Autistic traits lead to a dx of autism when young, improved skills and developmental leaps allow them to almost catch up to peers so they lose the dx or don't seem autistic, then the social demands of tween and teen years occurs and their peers leave them behind again. They can then be dx with Aspergers or HFA because the differences between them and their peers is now apparrent again. In fact Aspergers is most likely to be dx in the 11-15 age range, because that's when the differences become so obvious. If a new evaluation will help her get better services, then I say go for it. We need all the help we can to help our children keep their grounding and not get lost in their adolescence.



thewhitrbbit
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31 Oct 2012, 9:19 am

Yeah, a diagnosis will require looking at your child's early years. Many people here were diagnosed much later than 11.

It does sound like she has some traits, but that she has grown out of some of them. She could be a mild case.



ConfusedNewb
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31 Oct 2012, 9:32 am

Mummy_of_Peanut wrote:
ConfusedNewb wrote:
My husband just tried to get diagnosed and he was basically told theres nothing they could do by our GP! They looked into it for him but the outcome was that he would need to go private, his insurance didnt cover it so he has just left it
My friend is getting tested just now for possible Aspergers. It might depend on the health board area.


My GPs are notoriously useless :/ Might have to have a rethink, thanks!