What recovered from autism really means?

[Guest guest]

Hi all,

People everywhere talk about how different treatments can help children recover

from autism. I have even seen many people say that their children are

recovered. When I see their children and compared them to my son, my son is

doing much better and I don't consider my son recovered yet. So I'm confused...

I really want to know what " recovered " really means. I would really like people

to be able to measure improvements by using the same metrics " measuring stick " .

For me the meaning of recovered is being able to be independent in life,

happy, have friends, be successful in school, be able to find a job and keep

it(not be an expense to this country), be a confident person and most important

be 100% healthy.

In your opinion, what recovered means to you?

JR

[Guest guest]

I thought I'd use this as a chance to jump in and introduce myself.Some of you may recognize me from my Age of Autism post.As you may know,I don't just have autism,but a whole host of serious medical problems,that began between infancy,and age fifteen.My autism is/has always been like autistic disorder/LFA,but without intellectual disability.I have everything else,and I do mean everything,including eloping and headbanging.Some may call this atypical autism,and some high functioning autism.Medical problems,and regression triggered by illness,have always been a central part of my autism,which is why I cannot really relate to the majority of adult autistics.When was the last time you read an adult autistic like Baggs blogging about bowel disease,chronic fever,heart problems,or how a bout of one of these can lead to several days of

worsened autism symptoms,left alone an,acute infection that can lead to a major prolonged regression,such as I have had several times,most recently in April of 2007.This gets us to recovery.For all of the hype you see about this regimen or that regimen, and how it has "cured" someone of autism,recocovery is often a temporary thing.It can often take a minimum of ten to fifteen years to truly "recover","lose your diagnosis".or "move up spectrum" to a less severe ASD.One major infection can push you back decades,and cause serious regression.Amy,has your son actually been diagnosed with autoimmune disease?This means something very specific.As someone who has had just about every possible test for autoimmune disease.and had them come out more or less normal,I would be kind of surprised.Like wholly genetic causes,a truly autoimmune cause for autism hasn't been found.Allergies are a comorbidity,just like seizures,but they can make

autism worse.

I really hasn'tI do hope you saw Tim Buie,and Martha Herbert's presentation at this year's Maine CDC autism conference.They believe that not all complex medical syndromes in autism are fully mitochondrial.Some are part mito part something else,and some are yet another unidentified class of disease,possibly autoinflammatory,and involving the innate immune system. -- In mb12 valtrex , "amysmith_lasvegas" wrote:>> That's an excellent point Debi. Complete full recovery sometimes seems so unattainable, that we set ourselves up to feel like failures. "since he is doing this now, he must be doing this by next

year...." Doesn't always work out that way. I remember my son didn't understand Christmas at all. I was always thinking "next year he will be excited about Santa..." This happened for like 2-3 yrs and he finally understood it..but it wasn't on my timeline. It was when HE wanted to do it Looking for steady gains, great health and doing the best we can sounds like a better plan. Autism is an auto-immune disease..sometimes it's easier to think about maintaining this disease. Some can't cure asthma or allergies, but they can avoid certain triggers and keep it under control. It's not always as simple as ridding yeast or ridding metals. New stuff pops up when we least expect it. So, I would strive for your child to be healthy, do periodic testing to make sure you are going in the right direction and place your child in the least restrictive school environment, making sure he/she is both assisted and challenged at the same time.> > >

> > >> > To me recovery = cured. No more autism, no more symptoms. No more subtleties. It means gone. To me that's what it means. > > > > Failed recovery hurts. When Allie went gfcf at 2 1/2 yrs old & began talking, I just knew she would be recovered by kindergarten. That came & went, then I told myself by 2-3 grade. As that approached I said by puberty. Now puberty is starting & I'm slowly starting to accept she likely will always have autism. I'm moving more away from cured and more into improvements. That's why I think the autism community should not focus on recovery as much as improvement. To me recovery means cure, I'm sure to each person it means something different.> > > > When I began to miss those milestones I had made in my mind for my daughter, it was like getting stabbed in the guts over

& over. Some kids are cured, recovered, what ever you want to call it. I believe that. But to date they are a minority. But, the majority of kids with autism make varying degrees of improvement. If a parent expects improvements then parent gets expectations met. If child recovers, it's even more than expectations. If child doesn't recover, expectations still met through improvement. Therefore I wish we would focus on improving health to give child best outcomes and to prevent this parent funk that hits many of us when it doesn't happen.> > > > Debi> > > > --- In mb12 valtrex , " " > > > > > > In your opinion, what recovered means to you?> > > > > > JR> > >> >>

[Guest guest]

I was at the USAAA conference this weekend. Dr Goldberg brought in 3 young

adults that have recovered and a family. He stopped his talk so the children and

their parents could speak. I almost fell off my chair to hear they really didn't

remember having autism. One was in college, one high school and another going

off to college. They took questions from the audience and answered them! This

completely changed my view of the extent recovery is possible.

They have normal lives now and so do the parents. I just have to say I was

completly blown away and from the applause I would say so was the audience. I

had only seen recovery videos before that seemed a litte recovered but this has

COMPLETELY changed my goal of what is really posible. It was really nice to see

some happy outcomes for a change. Boy would I love my kid to drive me around

someday

Sally

>

> Hi all,

> People everywhere talk about how different treatments can help children

recover from autism. I have even seen many people say that their children are

recovered. When I see their children and compared them to my son, my son is

doing much better and I don't consider my son recovered yet. So I'm confused...

I really want to know what " recovered " really means. I would really like people

to be able to measure improvements by using the same metrics " measuring stick " .

>

> For me the meaning of recovered is being able to be independent in life,

> happy, have friends, be successful in school, be able to find a job and keep

it(not be an expense to this country), be a confident person and most important

be 100% healthy.

>

> In your opinion, what recovered means to you?

>

> JR

>