Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Hi Joan. Thanks for reply. The professionals involved with do not have experence or understanding of dual diagnosis and are cautious of opinion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 In a message dated 9/30/01 2:28:37 PM Eastern Daylight Time, jmedlen@... writes: > Do you feel your child's educational prgram is appropriate regardless of > label? If you do, then maybe it's not important? > Hi and Welcome. I think this is the key point in seeking a dx for your child. If having both dx's gets him the appropriate amount of services, then don't give up hope. Also, for many, there's a great deal of validation in getting a dx for your child. It explains so much. I can't offer any further advice than what Joan has said. But we'll be there to hold your hand along the way!!! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Hi looking for info on dual diagnosis in UK.I have a son with downs aged nearly 11 his name is , showing all the signs of ASD.I am having problems getting anyone to reconise ds-asd. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 --- lslycun@... wrote: > Hi looking for info on dual diagnosis in UK.I have a > son with downs > aged nearly 11 his name is , showing all the > signs of ASD.I am > having problems getting anyone to reconise ds-asd. > Hi my name is and I live over the water from Liverpool. My daughter is 3 and a half and we are just beginning the process of getting her diagnosed. Rebekah has been in a special school for comlex learning difficulties for the last 12 months so we began by approaching school with our concerns. Is in mainstream ?We have downloaded a load of stuff which someone from this site kindly sent to us.We are going in to Rebekah's school tomorrow again for results on tests they did last week and are taking the literature with us in case they have not come to the same conclusions as us. What kind of signs is showing? If you would like the website address that we got all the info from I will send it to you. mum to Rebekah 3 and Leah 4 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Hi Lesley: Have you had a chance to download the acrobat reader file of the issue of Disability Solutions covering DS and autism? If not, it's in the files section of this listserv on our homepage ( ) or from the Disability Soutions Web site: http://www.disabilitysolutions.org/news.htm It's volume 3 issue 5 & 6. Do you have any access to Sue Buckley? I've found in my few discussions with only a couple people from the UK that they are very skeptical of the dual diagnosis. You might have some luck gaining ground with written info. If not, you can try connecting with Dr. Bonnie (pattb0@...). She's quite responsive and may be of some help. Have they done any formal evaluations such as CARS or GARS? Sometimes it helps to do a formal test to help folks see what you're seeing. Why do they feel he does NOT have autism? How do they attribute his regression in speech? Regression is not a normal occurence in DS. It is a common sign of autism if there is no other medical cause. Keep tlaking! Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 --- lslycun@... wrote: > Hi . My name is Lesley great to hear from > someone who understands. > attends special needs school where he is > really happy. has > most signs of ds-asd e.g. dangly toys,throaty > noises,loss of speech etc. > I have been asking for 4yrs > now about the > possibility of him having autism and have had no > positive support. > > Hi Lesley Has the school not been of any use to you? This is my fear.Whilst not wishing to land Rebekah with another lable I really feel that she is a bright little thing but something is holding her back. This is especially evident when compared to her other peers-children with Downs that she has grown up with. Where she has always been on a similar level to them all(except for walking which she is only just starting to master)and her speech was advanced to many of them-she now appears to be falling further and further behind them. She is aggressive,head bangs,has spasmodic eye contact and 90% of the time prefers to be alone. Don't forget if you would like that website let me know. As usual it would appear that America is far more advanced and positive in their thinking of children like ours. > > [Non-text portions of this message have been > removed] > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 At 02:20 PM 9/30/01 EDT, you wrote: >Hi Joan. Thanks for reply. The professionals involved with do not have >experence or understanding of dual diagnosis and are cautious of opinion. Do they have experience with autism? If so, then ask them to use the same process of evaluating children for autism with yoru son who has DS. There are a number of studies in the professional journals explaining that we need to consider autism in children with DS just like any other child. Does anyone out there have those handy to copy? If not, I'll post them later. Download the issue of Disability Solutions and take it to them to read (after you read it). Both Dr and Dr. Capone have written aritcles about their experiences. And...ask they *why* they are concerned? If your child does not have autism, then the CARS (Children Autism Rating Scale) or the GARS (Gilliam Autism Rating Scale) will show that when scored. All you want is an answer. That's not asking too much. If autism didn't take your cihld's speech away....what did? They should want that answer too. Do you feel your child's educational prgram is appropriate regardless of label? If you do, then maybe it's not important? Sorry to be so quick and intense. It always bugs me when parents have questions and folks give them ambiguous answers. Welcome to our group! You'll love the people here. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Hi Lesley, Just wanted to welcome you and your son and glad you've joined this wonderful list who have been very supportive . You name it , we can relate , understand , so glad you're not alone dealing with the dual diagnosis . Irma , 13,DS/ASD. P.S. The list keeps growing and reading repeated names , , and the mommy names . Whew! We're going to need some time of a system to keep up with names . Sorry my mind is slow , I think I need a picture schedule : ) . -- In @y..., lslycun@a... wrote: > Hi looking for info on dual diagnosis in UK.I have a son with downs > aged nearly 11 his name is , showing all the signs of ASD.I am > having problems getting anyone to reconise ds-asd. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Your welcome Lesley , I know exactly how you feel when I found this list , so overwhelmed . I'll catch up with some e-mail you've been posting to get to know you . ttyl , take care . Irma, 13,DS/ASD. > Hi Irma > > Thanks for the welcome note, feeling better for finding this list. > > Lesley,10. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2001 Report Share Posted October 6, 2001 hi, sorry i havent chimed in sooner, have abut 300 emails, been gone most of week. This is THE place to be for help, guidance, and support in the world. I think gail and donna did a great job! For nathan the school has been great with stuff our docs say, and i continuely give them info about it, and books about autism or ds, behavior mangedment and sensory integration etc, and they eagerly read them, most of them do. School wise i think this has been the best year for nathan with a classic classrrom finally, he is doing great!! and not one beavhior outburst yet this year, knock on wood. shanwa. --- duffey48@... wrote: > In a message dated 9/30/01 2:28:37 PM Eastern > Daylight Time, > jmedlen@... writes: > > > > Do you feel your child's educational prgram is > appropriate regardless of > > label? If you do, then maybe it's not important? > > > > Hi and Welcome. I think this is the key point in > seeking a dx for your > child. If having both dx's gets him the > appropriate amount of services, > then don't give up hope. Also, for many, there's > a great deal of > validation in getting a dx for your child. It > explains so much. > I can't offer any further advice than what Joan has > said. But we'll be > there to hold your hand along the way!!! > Donna > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.