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A second autism assessment.

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A second autism assessment.

Postby Lelynn81 on Fri Nov 18, 2011 8:29 pm

My son J, who is 7 had his first autism assment in july at QA. After their assessment they explained - and I have read their forms as well- that he met the range for autism on nearly everything except for communication- cause he talks so well. Because of that, they said he didnt have it. i felt alittle bit like they didnt see an accurate picture?

His pediatrician agrees! She has read all or the paperwork, from the school, from OT's, from daycare, and even seeing him in her office, he was showing symptoms, stuck on something he wanted and repeating it over and over and rocking right there in the appt. She thinks Victoria missed it with him and she wants to get him reassessed in Vancouver at Sunny Hill. Not sure how long the wait will be or anything.

Has anyone gone through a second assessment? Should I get him to meet with any other professionals for anymore paperwork?

I hope it doesnt take too long. I feel so frusterated cause he is high functioning and so he isnt the classic asd child. i feel like because he doesnt fit perfectly into their mold, that hes falling through the cracks? While im grateful and so so proud, that hes so verbal and so insanely smart, i feel like we have to fight harder to get help for him?
**Ohana means family, and family means no one gets left behind or forgotten. ** Lilo and stitch

**Autism, like a rainbow, has a bright side and a dark side and even though it can mean rough weather, it can be beautiful! **
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Re: A second autism assessment.

Postby Aladora on Sat Nov 19, 2011 8:23 am

Susan
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Re: A second autism assessment.

Postby Lelynn81 on Sat Nov 19, 2011 9:04 am

Thanx! I love your idea about getting the school to keep a daily record of any bahviour concerns. I know occasiionally they make a list but its only when we have a drs appt pending, every few months. A daily book would be soo helpful to show the drs and the people at sunny hill when we eventually get there! Im pretty sure i wont have to yell too much to get the second assessment,thankfully, The ped. is already agreeing he needs it and shes going to get him re-assessed at sunny hill. Its just a matter of when at this point. Its good to know that its not unusual for them to miss it at the first assessment, and that we're not alone here, though its sad for the kids :(

i understand that the province has limited funding, but it seems like they are bypassing those on the spectrum who appear high functioning. High functioning kids need just as much help, support etc as others in my opinion? Maybe they just figure if parents dont fight after the first assessment says no, then the family doesnt really need it, - maybe by fighting for the second assessment it lets them know that he does need it? i guess its a good way to see which kids really honestly need the help?

Its sad though that these kids have to wait even longer for the help and support they need. i wish i cold afford to get him these supports, beahviour, sensory and emotional consults and classes on my own! i feel so helpless and i know the school does to at times. Hes such a brilliant kid, its hard to see him struggle. :(

Thanx for replying :):) im going to talk to his school about keeping a daily record on monday!
**Ohana means family, and family means no one gets left behind or forgotten. ** Lilo and stitch

**Autism, like a rainbow, has a bright side and a dark side and even though it can mean rough weather, it can be beautiful! **
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Re: A second autism assessment.

Postby tracy on Sat Nov 19, 2011 1:28 pm

We did our assesment privatly, up Island (yes they are "aloud" to do the assesment to all the nay sayers on here :-D ) and our dd is funded ect - I am SO glad that we went that route as apposed to QA. That we did that was pure luck as we are homeschooling and the place we are with just happens to use this private place for all their kids.
I would get a second assesment done if you feel this strongly - if you want the info about where we went let me know off KIV (e-mail me) and I can get you their info, they are not cheap, but may be worth it to you, not sure. I know the people that I know that have gone to Vancouver have had great experiences there as well. Good luck to you.
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Re: A second autism assessment.

Postby Island-JJ on Tue Nov 22, 2011 9:47 pm

2 issues:

1) If the QA says that they don't know, getting things sent over to sunnyhill is relatively easy (relatively). But if the QA says that they have determined a yes or a no then sunnyhill won't accept the referral. You can yell and kick and scream all you want, it won't get accepted. Easier to move to vancouver than to try to get the referral in while living in victoria.

2) Getting a private diagnosis sometimes works. But it never over-rides the QA diagnosis. So, if the private one says yes autism and the QA says no, not autism, the QA wins. VERY different from the situation where there isn't a disagreeing diagnosis from the official team at the QA.

Best bet depends on who actually signed off on the diagnosis. With all the huge demand for autism assessments (because of all the money associated with it) the QA now has several teams, not all of which are created equally.

Depending on who signed off the assessment, it can be easier or more difficult for the pediatrician to get the QA to redo the assessment with a different team.

The behaviour you described fits certain psychiatric diagnoses other than autism. Has he seen psychiatry to rule out a psychiatric diagnosis?

Looking for the best fitting diagnosis should be what is important, not simply looking for the best funded one.
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Re: A second autism assessment.

Postby Lelynn81 on Mon Dec 05, 2011 9:11 pm

My ped couldnt get him into sunny hill cause hes already got a case with QA, however because of so many asd criteria met with qa's assessment in july, Qa has said that they want me to try another adhd medfor him for 2 weeks and if it doesnt work, then qa will reassess him.

We are starting the drug that qa has suggested to my pediatrician tomorrow. hopefully it doesnt have the same negative effects the other one had! im a lil nervous to do it, but am willing to try. My sons pediatrican wants me to update her on how it goes on the 21st so she can contact qa if need be.
**Ohana means family, and family means no one gets left behind or forgotten. ** Lilo and stitch

**Autism, like a rainbow, has a bright side and a dark side and even though it can mean rough weather, it can be beautiful! **
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Re: A second autism assessment.

Postby Lelynn81 on Mon Dec 05, 2011 9:21 pm

while im mildly concerned about the cost of getting him support/ help, im not looking for the diagnosis that fits the most money. i dont WANT my son labeled with anything, much less something seemingly scary to me like asd. i am doing this to better understand him, so that everyone around him can better understand him and so we can all help him, and support him in the way best for him. its hard seeing him struggle in a way other kids dont. i just want to know whats going on for him.
**Ohana means family, and family means no one gets left behind or forgotten. ** Lilo and stitch

**Autism, like a rainbow, has a bright side and a dark side and even though it can mean rough weather, it can be beautiful! **
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Re: A second autism assessment.

Postby Lelynn81 on Mon Dec 05, 2011 9:23 pm

that being said, i do think the school is pushing a little bit for the diagnosis for funding reasons but maybe they really need the help for him. ive only seen him in the school setting a little bit and what i hear isnt good, except for academics.
**Ohana means family, and family means no one gets left behind or forgotten. ** Lilo and stitch

**Autism, like a rainbow, has a bright side and a dark side and even though it can mean rough weather, it can be beautiful! **
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Re: A second autism assessment.

Postby Island-JJ on Fri Dec 16, 2011 1:56 am

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Re: A second autism assessment.

Postby Lelynn81 on Wed Jan 25, 2012 7:27 am

they tried him on something called biphentin i think? he was on it for a few weeks and it didnt help :( It kept him awake at night, he lost a few pounds and it gave him a bunch of un needed energy- lol and it also made him more short tempered, supersuper active and unable to sit down or sit still or concentrate. It pretty much gave him adhd :( I have adhd and when i mentioned that to the dr at qa, he kind of seemed to latch onto it but our son doesnt really meet the criteria, and it doesnt account for all the other stuff going on?


My husband and i wrote down everything we saw and everything his teacher saw and we told his dr and she said to take him off the meds. At least these meds werent as bad as the vyvanese. he tried those before and it turned him inot a scary child!!!! Anyways his pediatrican has called qa and they are wanting him back for a second assessment, since he met so much of the criteria the first time around.

The only diagnosises that he has been given to date are sensory processing disorder and encopresis. They werent giving him the diagnosis of adhd, they just wanted us to try a second form of adhd meds before sending for a second asd assessment.
he is getting the second assessment cause he met so much of the criteria.

I feel like my instinct is telling me, that he has mild aspergers. high functioning at most times.
**Ohana means family, and family means no one gets left behind or forgotten. ** Lilo and stitch

**Autism, like a rainbow, has a bright side and a dark side and even though it can mean rough weather, it can be beautiful! **
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Re: A second autism assessment.

Postby Samandemma on Wed Jan 25, 2012 4:58 pm

Glad for your DS and for your family that your DS is going to have a 2nd assessment at QA. Hope you soon have the assessment and accurate information so that your DS receives the support and treatment options that will be most helpful for him. Good for you for continuing to advocate for the answers and effective supports and "treatment".
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Re: A second autism assessment.

Postby Lelynn81 on Wed Feb 29, 2012 11:50 pm

I talked to QA this week and they are thinking, that after discussing things with my sons pediatrician and having another look at things, that they may have made a mistake. He fit us in for in two weeks!

My son had a pediatrician appt this week and she tried to have a conversation with him and it was very one sided. After a few minutes, she gave up and asked how he was doing. I explained some of the things that had been happening at home and school, giving examples and stuff. She said shes very concerned about him. She said hes a super smart boy(mommy brag: hes in grade 2 and doing grade 4 and 5 work!), who loves school and is super warm and afectionate with his family. Shes concerned about his langauge (how he uses it socially), with his social skills, his rule obssessiveness, and his self help skills especially where it concerns with his sensory processing and his encopresis. She said she knows he needs some help and she will try her hardest to do what she can.

its hard cause one part of me still wants someone to say its normal and hes fine and id like to go back to denial land? lol but i know thats not going to help him. at this point i dont care what they diagnose him with, as long as they help us help him. :(:(
**Ohana means family, and family means no one gets left behind or forgotten. ** Lilo and stitch

**Autism, like a rainbow, has a bright side and a dark side and even though it can mean rough weather, it can be beautiful! **
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Re: A second autism assessment.

Postby tracy on Thu Mar 01, 2012 7:59 am

all I have for you is cyber hugs so glad they are looking at him again.......
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Re: A second autism assessment.

Postby Lee07 on Thu Aug 08, 2013 10:24 am

Monarch House has a centre in Victoria -we did a private assessment with them and were very happy.
Second opinions are important! :-D
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