My eldest, Duncan, was diagnosed at 5 1/2 with Aspergers (no surprise there!). My other son, Tristan aged 4, was diagnosed with Atypical autism the same day (a relief not a surprise). It is also called Pervasive Developmental Disorder - Not Otherwise Specified or PDD-NOS. They are both a part of the Spectrum of Autism Disorders.
These diagnoses enabled funding to be unlocked for Early Intervention equipment and services. I am very grateful for that. It meant $12 000 until they turned 7. We used up a lot more EI services for Tristan (Speech, OT, and EI) and mostly equipment for Duncan (sensory tools, slope boards, tripp trapp chairs, ipad). Both the boys are THRIVING NOT JUST SURVIVING in mainstream schooling because of this help.
But now the mechanism for that diagnosis, the DSM - IV is undergoing some serious changes to become the DSM-V, changes that could see that funding denied to many families in our situation with young children. I will not elaborate any more other than pointing you to some terrific commentaries on these changes.
DSM-V et al in 'The Conversation' by Andrew Whitehouse
DSM-5 in 'Australian Doctor' by David Brill
Proposed DSM-5 Changes in 'Autism Support Network' by Michelle Winner
I am not quite sure how these revisions will affect me and the boys personally but it is concerning enough to read up on the topic.
That is a bit concerning especially when early intervention makes such a big difference! (And a lot of the therapies - while fabulous, aren't cheap!).
ReplyDeleteMy son was diagnosed at 4 and getting the diagnosis was a bittersweet blessing. It offered us payment through insurance to many programs that helped my son. With some diet changes, working with a holistic doctor and these program my son is doing AMAZING! Most people would never even guess he is even on the spectrum. He is know mainstreamed in public kindergarten.
ReplyDeleteMy older son has Aspergers, the diagnosis was no surprise, the fact it took until he was 5 to get the diagnosis was. It then took another 2 years to get him funding for full time support at school and since he's had it he's gone from strength to strength. He hasn't really had any therapies except for Speech which he doesn't need to do anymore. I'm sorry that your funding is being cut, I know how hard it is to fight on and on for the help your kid(s) need and it must be horrible to have what you know they need removed.
ReplyDeleteHi there, I'm a quilter and I really like your blog! Especially your list of annotated links! I am also the mom of a son diagnosed with Asperger's Syndrome at age 3. He is now 18 yo and is a freshman at Humboldt State University in Arcata, CA! We left him there a couple of weeks ago, and so far, so good. All of you spectrum moms and dads out there know, you take one day at a time and never assume anything! But I'm writing to let you know, keep loving your autistic children, fighting to get what they need, and surviving the low times! I feel my youngest son is off to a good start at college, and I can't tell you how relieved I am. It's been a long hard haul, assembling a team in upstate NY and then eastern PA to handle ALL the issues. I learned that the PARENTS are the most powerful and knowledgeable members of the team. Keep your spirits up, and hang in there!
ReplyDeleteHi there, I'm a quilter and I really like your blog! Especially your list of annotated links! I am also the mom of a son diagnosed with Asperger's Syndrome at age 3. He is now 18 yo and is a freshman at Humboldt State University in Arcata, CA! We left him there a couple of weeks ago, and so far, so good. All of you spectrum moms and dads out there know, you take one day at a time and never assume anything! But I'm writing to let you know, keep loving your autistic children, fighting to get what they need, and surviving the low times! I feel my youngest son is off to a good start at college, and I can't tell you how relieved I am. It's been a long hard haul, assembling a team in upstate NY and then eastern PA to handle ALL the issues. I learned that the PARENTS are the most powerful and knowledgeable members of the team. Keep your spirits up, and hang in there!
ReplyDelete