Reply to The Kids Who Beat Autism: New York Times

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]Kids can't "lose" an autism diagnosis. That's sort of like saying in the middle of a gestational period, that a woman is no longer pregnant. If they no longer had a diagnosis of autism, it's likely they were misdiagnosed to begin with.

Children can show very autistic like behavior but not have full blown autism.

Stupid, stupid researchers out there and doctors diagnosing our children.[/quote]

And WHO are you PP? People figure out medical things all the time. Jeez, there is no reason to believe there will be no progress in autism. I'm glad there are people out there with open, inquisitive minds willing to work on things like this.[/quote]

Who am I? I'm a parent of an autistic child who has probably ever therapy known from the age of two on. I left my legal career to do nothing but help my child and I left no stone unturned. My child was very high functioning to begin with and, despite all efforts, we see very little difference. My husband is a doctor who sees children with ASD all the time also. I never stated there would no progress in autism, simply that progress will not be enough to take you out of the diagnosis. It will not. So fuck you for your attitude and ignorance. When you have tried every known therapy or treatment, then write on this thread. [/quote]

Just because you have an autistic child does not mean you have a crystal ball. Thank goodness your negative attitude will not stop others from searching for answers.[/quote]

There are no answers.  Just interventions, wild educated guesses and pure luck.  She is sad, exhausted and really struggling.  Till you have been there, do not judge. [/quote]

There are no answers NOW. We hope -- I see you are without hope but others still have hope -- that there will be answers, cures and ways to prevent it in the future. That's what the article was about -- that there may be cures.[/quote]

My child happens to be one of the ones breaking through and I posted that so I do not understand your comment.  I am very hopeful my child will be ok but as we go to services daily, I can see the wide variety of kids and how they and their families struggle.  There is no cure - these kids can function better but they will still have their struggles.  Until they find out the individual causes for why, then can never truly cure it.  I believe in misdiagnosis as the reason not cure.  You cure cancer or another medical issue.  Autism is not something your cure.  [/quote]

How can you say a thing like that? If they don't even know what causes it -- and something obviously causes it -- then how can you be so determined that there is no cure? There is a cure. We need to find it. (they didn't used to cure cancer or other medical issues either -- but thanks to research, now we can cure some cancers and lots of other medical conditions.)[/quote]

This is not cancer or some illness.  This probably has multiple origins depending on the person.  We do not have the technology to identify it and while we can improve the quality of some lives, we can never cure it. [b] If it is "cured," then that person had something else entirely and never had autism.  [/b][b]Autism can never be cured[/b]... just the quality of life improved with early and continuing intervention (which our society often does not even want to pay for).  One day there may be a "cure" but as of today, we have a bunch of studies with educated guesses and wishful thinking and a group of us parents struggling to do the very best for our kids and hoping for the best possible outcome within this unknown.  This is NOT cancer.  This is not an allergy.  We don't know what it is and my guess is for many, it is something different.  It could be a birth defect, it could be a nutritional issue, it could be a birth injury, it could be a genetic issue or it could be none of the above.  We just do not know!  With some cancer's, they can pinpoint it and fix it.  Do not compare the two.  That is insulting.[/quote]

There are respected, mainstream medical professionals who do not agree with you.  There are kids who lose their DX and who improve enough that they are for all intents and purposes "cured."

We know so little about autism that to say that no one ever gets cured is ludicrous. People get better. Neuroplasticity is wonderful thing. Some people beat it.

[/quote]

Name those professionals who say Autism can be cured. Name them now. [b]I will call them[/b].[/quote]

Why don't you start with Catherine Lord and Deborah Fein, autism EXPERTS who did these two separate studies.

[b]http://www.ncbi.nlm.nih.gov/pubmed/23320807[/b]

Optimal outcome in individuals with a history of autism.
Fein D1, Barton M, Eigsti IM, Kelley E, Naigles L, Schultz RT, Stevens M, Helt M, Orinstein A, Rosenthal M, Troyb E, Tyson K.
Author information
Abstract
BACKGROUND:

Although autism spectrum disorders (ASDs) are generally considered lifelong disabilities, literature suggests that a minority of individuals with an ASD will lose the diagnosis. However, the existence of this phenomenon, as well as its frequency and interpretation, is still controversial: were they misdiagnosed initially, is this a rare event, did they lose the full diagnosis, but still suffer significant social and communication impairments or did they lose all symptoms of ASD and function socially within the normal range?

METHODS:

The present study documents a group of these optimal outcome individuals (OO group, n=34) by comparing their functioning on standardized measures to age, sex, and nonverbal IQ matched individuals with high-functioning autism (HFA group, n=44) or typical development (TD group, n=34). For this study, 'optimal outcome' requires losing all symptoms of ASD in addition to the diagnosis, and functioning within the nonautistic range of social interaction and communication. Domains explored include language, face recognition, socialization, communication, and autism symptoms.

RESULTS:

Optimal outcome and TD groups' mean scores did not differ on socialization, communication, face recognition, or most language subscales, although three OO individuals showed below-average scores on face recognition. Early in their development, the OO group displayed milder symptoms than the HFA group in the social domain, but had equally severe difficulties with communication and repetitive behaviors.
CONCLUSIONS:

Although possible deficits in more subtle aspects of social interaction or cognition are not ruled out, the results substantiate the possibility of OO from autism spectrum disorders and demonstrate an overall level of functioning within normal limits for this group.

[b]http://weillcornell.org/clord[/b]

Catherine Lord, Ph.D. is a licensed clinical psychologist with specialties in diagnosis, social and communication development and intervention in autism spectrum disorders (ASD). She is renowned for her work in longitudinal studies of children with autism as well as for her role in developing the autism diagnostic instruments used in both practice and in research worldwide today. She has also been involved in the development of standardized diagnostic instruments for ASD with colleagues from the United Kingdom and the United States (the Autism Diagnostic Observation Schedule (ADOS) an observational scale; and the Autism Diagnostic Interview – Revised (ADI-R) a parent interview), now considered the gold standard for research diagnoses all over the world.

Dr. Lord completed degrees in psychology at UCLA and Harvard, and a clinical internship at Division TEACCH at the University of North Carolina at Chapel Hill.

Dr. Lord’s work at the Center for Autism and the Developing Brain involves continued research in validity and longitudinal studies, early diagnosis of children with autism, and regression in children with autism and clinical evaluations and diagnoses of children and adults who may have autism.[/quote]

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