Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 While I know technically that many children CAN be diagnosed at so early an age, I grow concerned at how many children ARE being diagnosed at 18 months. As a member of a multidisciplinary autism assessment team, I can tell you that we assessment many under two's who COULD be on the spectrum, but might just need some intensive early intervention. I worry that a child is given so significant a label that isn't technically supposed to ever be removed. In the schools, I like that a child can be diagnosed with as " preschool child with disability- suspected autism " to get services. That label doesn't have to change until they are 5 or 6 and will get them all the services they need without labelling them as autistic. Then, when they are in kindergarten, the child can have another big evaluation to determine with autism is truely the most appropriate label for them. > I was told by the autism specialist that evaluated my son that children > with previously documented developmental delays like Downs are often are not > diagnosed until 3 or much later. She said it was because many of the > behaviors are attributed to the Down Syndrome or other delays. > Neurotypical kids can often be diagnosed as early as 15-18 months. > Amy > Mom to Connor 3 years DS-ASD and Brenna NT 15 months > > . > > > -- Books just wanna be FREE! See what I mean at: http://bookcrossing.com/friend/nifferdoodle See my photos from my recent trips: http://www.flickr.com/photos/nifferdoodle/ " I've always wanted to have a life someone would want to live vicariously through. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 The thinking when my son was under 6 was that a label of developmentally delayed (which he was) would get him all the services that he needed. We refused any other label until age 6 when he was " officially " labeled as having global delays including cognitive understanding. At age 8 he was again re-labled (like a soup can) with DS/PDD-nos. At age 11 ish we changed Pdd-NOS???/ASD???? And that is what we have today. In other words, he could get services from age three with a dx of DD, then when he reached school age, it was felt the label had to be more specific. Then wehn he hit 3rd grade approx, we were DEMANDING a more secific way of understand so he got the PDD-NOS lable. It took more years to get the ASD, which I wouldn;t have pushed for EXCEPT that there were therapeutic funds specific to that label which would pay for OT, respite, and later for respite/camp. BTW - we did not get an IQ test until he was 17 only because I wanted an official number in case anyone ever questioned his abilities for funding reasons. (SS< Waiver, etc) On Thu, Dec 4, 2008 at 7:34 AM, Wetter Grundulis < jenniferwetter@...> wrote: > While I know technically that many children CAN be diagnosed at so early > an > age, I grow concerned at how many children ARE being diagnosed at 18 > months. As a member of a multidisciplinary autism assessment team, I can > tell you that we assessment many under two's who COULD be on the spectrum, > but might just need some intensive early intervention. I worry that a child > is given so significant a label that isn't technically supposed to ever be > removed. In the schools, I like that a child can be diagnosed with as > " preschool child with disability- suspected autism " to get services. That > label doesn't have to change until they are 5 or 6 and will get them all > the > services they need without labelling them as autistic. Then, when they are > in kindergarten, the child can have another big evaluation to determine > with > autism is truely the most appropriate label for them. > > On Wed, Dec 3, 2008 at 11:08 PM, Amy <aejackso21@...<aejackso21%40yahoo.com>> > wrote: > > > I was told by the autism specialist that evaluated my son that children > > with previously documented developmental delays like Downs are often are > not > > diagnosed until 3 or much later. She said it was because many of the > > behaviors are attributed to the Down Syndrome or other delays. > > Neurotypical kids can often be diagnosed as early as 15-18 months. > > Amy > > Mom to Connor 3 years DS-ASD and Brenna NT 15 months > > > > . > > > > > > > > -- > Books just wanna be FREE! See what I mean at: > http://bookcrossing.com/friend/nifferdoodle > > See my photos from my recent trips: > http://www.flickr.com/photos/nifferdoodle/ > > " I've always wanted to have a life someone would want to live vicariously > through. " > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 It does seem unfortunate that we have to get these labels for our children to get funding. I'm waiting for an ASD assessment for my son (age 3), but honestly at this point I'm only getting it so we can get more funds and some extra behavior support. I'm starting to feel like the more labels we get, the more distance we get from the real little boy. ________________________________ To: Sent: Thursday, December 4, 2008 1:00:01 PM Subject: Re: change at 3 The thinking when my son was under 6 was that a label of developmentally delayed (which he was) would get him all the services that he needed. We refused any other label until age 6 when he was " officially " labeled as having global delays including cognitive understanding. At age 8 he was again re-labled (like a soup can) with DS/PDD-nos. At age 11 ish we changed Pdd-NOS???/ASD? ??? And that is what we have today. In other words, he could get services from age three with a dx of DD, then when he reached school age, it was felt the label had to be more specific. Then wehn he hit 3rd grade approx, we were DEMANDING a more secific way of understand so he got the PDD-NOS lable. It took more years to get the ASD, which I wouldn;t have pushed for EXCEPT that there were therapeutic funds specific to that label which would pay for OT, respite, and later for respite/camp. BTW - we did not get an IQ test until he was 17 only because I wanted an official number in case anyone ever questioned his abilities for funding reasons. (SS< Waiver, etc) On Thu, Dec 4, 2008 at 7:34 AM, Wetter Grundulis < jenniferwetter@ gmail.com> wrote: > While I know technically that many children CAN be diagnosed at so early > an > age, I grow concerned at how many children ARE being diagnosed at 18 > months. As a member of a multidisciplinary autism assessment team, I can > tell you that we assessment many under two's who COULD be on the spectrum, > but might just need some intensive early intervention. I worry that a child > is given so significant a label that isn't technically supposed to ever be > removed. In the schools, I like that a child can be diagnosed with as > " preschool child with disability- suspected autism " to get services. That > label doesn't have to change until they are 5 or 6 and will get them all > the > services they need without labelling them as autistic. Then, when they are > in kindergarten, the child can have another big evaluation to determine > with > autism is truely the most appropriate label for them. > > On Wed, Dec 3, 2008 at 11:08 PM, Amy <aejackso21yahoo (DOT) com<aejackso21% 40yahoo.com> > > wrote: > > > I was told by the autism specialist that evaluated my son that children > > with previously documented developmental delays like Downs are often are > not > > diagnosed until 3 or much later. She said it was because many of the > > behaviors are attributed to the Down Syndrome or other delays. > > Neurotypical kids can often be diagnosed as early as 15-18 months. > > Amy > > Mom to Connor 3 years DS-ASD and Brenna NT 15 months > > > > . > > > > > > > > -- > Books just wanna be FREE! See what I mean at: > http://bookcrossing .com/friend/ nifferdoodle > > See my photos from my recent trips: > http://www.flickr. com/photos/ nifferdoodle/ > > " I've always wanted to have a life someone would want to live vicariously > through. " > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 LAbels are for funding - not to allow society to label our children. Keep your child in miond (as I see you are doing) and think of the labels as paperchase to get funding!!! > It does seem unfortunate that we have to get these labels for our > children to get funding. I'm waiting for an ASD assessment for my son (age > 3), but honestly at this point I'm only getting it so we can get more funds > and some extra behavior support. I'm starting to feel like the more labels > we get, the more distance we get from the real little boy. > > ________________________________ > From: Sara Cohen <pastmidvale@... <pastmidvale%40gmail.com>> > To: > Sent: Thursday, December 4, 2008 1:00:01 PM > Subject: Re: change at 3 > > > The thinking when my son was under 6 was that a label of developmentally > delayed (which he was) would get him all the services that he needed. We > refused any other label until age 6 when he was " officially " labeled as > having global delays including cognitive understanding. At age 8 he was > again re-labled (like a soup can) with DS/PDD-nos. At age 11 ish we changed > Pdd-NOS???/ASD? ??? And that is what we have today. In other words, he > could get services from age three with a dx of DD, then when he reached > school age, it was felt the label had to be more specific. Then wehn he hit > 3rd grade approx, we were DEMANDING a more secific way of understand so he > got the PDD-NOS lable. It took more years to get the ASD, which I wouldn;t > have pushed for EXCEPT that there were therapeutic funds specific to that > label which would pay for OT, respite, and later for respite/camp. BTW - we > did not get an IQ test until he was 17 only because I wanted an official > number in case anyone ever questioned his abilities for funding > reasons. (SS< Waiver, etc) > > On Thu, Dec 4, 2008 at 7:34 AM, Wetter Grundulis < > jenniferwetter@ gmail.com> wrote: > > > While I know technically that many children CAN be diagnosed at so early > > an > > age, I grow concerned at how many children ARE being diagnosed at 18 > > months. As a member of a multidisciplinary autism assessment team, I can > > tell you that we assessment many under two's who COULD be on the > spectrum, > > but might just need some intensive early intervention. I worry that a > child > > is given so significant a label that isn't technically supposed to ever > be > > removed. In the schools, I like that a child can be diagnosed with as > > " preschool child with disability- suspected autism " to get services. That > > label doesn't have to change until they are 5 or 6 and will get them all > > the > > services they need without labelling them as autistic. Then, when they > are > > in kindergarten, the child can have another big evaluation to determine > > with > > autism is truely the most appropriate label for them. > > > > On Wed, Dec 3, 2008 at 11:08 PM, Amy <aejackso21@...<aejackso21% > 40yahoo.com> > > > wrote: > > > > > I was told by the autism specialist that evaluated my son that children > > > with previously documented developmental delays like Downs are often > are > > not > > > diagnosed until 3 or much later. She said it was because many of the > > > behaviors are attributed to the Down Syndrome or other delays. > > > Neurotypical kids can often be diagnosed as early as 15-18 months. > > > Amy > > > Mom to Connor 3 years DS-ASD and Brenna NT 15 months > > > > > > . > > > > > > > > > > > > > -- > > Books just wanna be FREE! See what I mean at: > > http://bookcrossing .com/friend/ nifferdoodle > > > > See my photos from my recent trips: > > http://www.flickr. com/photos/ nifferdoodle/ > > > > " I've always wanted to have a life someone would want to live vicariously > > through. " > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2008 Report Share Posted December 5, 2008 > > It does seem unfortunate that we have to get these labels for our children to get funding. I'm waiting for an ASD assessment for my son (age 3), but honestly at this point I'm only getting it so we can get more funds and some extra behavior support. I'm starting to feel like the more labels we get, the more distance we get from the real little boy. This is so true here in Texas, what a difference it has made for my son with the added autism label versus anyone receiving services with the MR label. Once my son was dx'd with autism at 13 y/o, it open up so much with the school district and within the state Medicaid waiver funds. Sad that my son missed out during his early years and master lots of unwanted or should I say inappropriate skills for many years only because no one who he was under their wings at several school districts knew how to work with him, many lack a lot of at least the basic training but I was right along as I did not know anything about the word " autism " . There was one particular teacher during her elementary years which was not his home campus and then transfered out to a brand new classroom at the home campus with a brand new teacher, still what did I know just going with the flow but knew he did wonders with her. Once I ran into the teacher he was with temporary, I gave the updated information of my son being dx'd with autism while attending middle school, teacher had mentioned " Good thing I had taken some workshop sessions on autism " . But while under her wings, she always said " If he was going to be stubborn, she was going to, too " . It always worked and she would video tape all her work with her students which was nice to have a copy of her working with during his elementary years. Always thought it was due to the Down syndrome stubbornness. Then within time I was either being tapped on the shoulder or asked by several strangers when out and about, " if my son had autism? " I immediately said " You see the autism? " , and of course most of their replies were like " Oh, we do not mean to upset you or anything " , I would immediately tell them that they weren't, just that he was born with Down syndrome and they would respond with " Really, we only see the autism in him as we too have a child with autism " . Where in the world were all those who specialize with autism? Autism was not recognized throughout those years while my son was younger, so it is wonderful if possible when dx'd under the autism spectrum in this generation, but you keep the tally of labels. It does not hurt to have it added due to the supported services that are be addressed even among other states as my friends and I have been doing some research for when they become adults. It helps, with time as there is this massive growth of autism, many agencies that assist with funds while available will help pay for the specialized services needed as the awareness continues and many are changing their policies to help serve those under the autism spectrum. Our job of course once dx'd under the autism spectrum is empowering them of the dual dx's of DS & AU of how this could be of the Chapter of our lives. Good luck, Irma,20,DS/ASD Quote Link to comment Share on other sites More sharing options...
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