Re: Has anyone lost their Educational Dx, of Autism lately ?

[Guest guest]

That doesn't make any sense... how does one suddenly become neurotypical after living with autism? And PS, how did you get an educational diagnosis? Our school wouldn't touch that with a ten foot pole.

I've never heard of someone losing their diagnosis, unless the first diagnosis was determined to be incorrect, in which case I'd get another opinion. Even with tons of therapies and assistance one can appear like the drones we are in America but still have autism. Do they realize autism isn't one of those things that goes away??

Bizarre.

On 3/4/07, candymania <candymania@...> wrote:

We recently lost our Autism DX, to non disabled, has anyone else come across this.

[Guest guest]

Our local support group is part of a larger group that supports

Southern California (TACA). They have an annual meeting of recovered

kids. I have never attended but I have heard others share how

encouraging it is to see. There are dozens that have lost a

diagnosis.

I saw clips from I believe a DAN conference one time where they had

about 10 kids that recovered from autism. They showed video clips of

each the children during their therapy sessions or in daily family

life and there was no doubt they were autistic. Then they showed

clips years later when they are considered " indistinguishable " . They

also had all the kids up on stage being interviewed by Lou Diamond

. They sure looked like they were no longer autistic.

One of the kids on spotlighted was the son of a lady I know. When my

son was first diagnosed almost 6 years ago, my counselor gave me her

number to contact her. I met her and she would share what

improvements her child was making and her frustrations at getting

services. Shortly after, my son attended the same special needs

school as her son. I have no doubt this child was autistic. Now,

years later her son has lost his diagnosis. I would say he still has

residual issues but they are very minor and not much different than

issues typical kids may have.

I fully believe a child can recover from autism. I myself am

dyslexic but as long as I don't eat food additives, I no longer make

reversals.

> >

> > We recently lost our Autism DX, to non disabled, has anyone

else come

> > across this.

> >

> >

> >

>

[Guest guest]

****************

Avian Rights wrote:

That doesn't make any sense... how does one suddenly become neurotypicalafter living with autism? And PS, how did you get an educational diagnosis?Our school wouldn't touch that with a ten foot pole.I've never heard of someone losing their diagnosis, unless the firstdiagnosis was determined to be incorrect, in which case I'd get anotheropinion. Even with tons of therapies and assistance one can appear like thedrones we are in America but still have autism. Do they realize autism isn'tone of those things that goes away??

****************

I would have to disagree with the assertion that people with autism can't recover. There are many case studies of children who received intensive (30+ hours/week) early ABA intervention, and have become "indistinguishable from their peers" in aspects that are considered the hallmarks of autism (language, social, stereotypy/sensory). I recommend the book "Let Me Hear Your Voice" by Maurice.

I have also read accounts of children making remarkable progress, and or "recovering" through intensive Floortime therapy, chelation, special diets, or a combination approach.

Autism is no longer the "life sentence" that it once was. Not all autistic individuals can overcome their sensory issues, social and/or language "deficits," but ALL can improve.

While I don't think neurological differences are bad, and I would go so far as to say some autistic traits can be gifts, I do think that intervention to help the autistic person overcome the challenges of their "disability" is a worthwhile endeavor.

I hope I didn't step on anyone's toes, there!

Warm Regards,

(mom to a special little boy)

[Guest guest]

Hi ladies,

I don't think my point came across clearly. I'll do my long-winded attempt at an explanation.

A diagnosis is a label for a set of symptoms, nothing more. The main purpose of a diagnosis is to determine a starting point for some sort of theraputic intervention. Yes, when those symptoms are targeted with therapy they can and sometimes do eventually go away.

Accepting that there is a genetic component to Autism which is triggered by an environmental factor, which is a theory that I do accept, then there would always be the biological component, separate of the symptoms. In other words, I believe that it's always in there regardless of the outward signs of a well-adjusted person who may no longer have the diagnosis (since a diagnosis is a term for a cluster of symptoms- no outward symptoms = the potential for no diagnosis). You're not always going to teach someone true empathy, but you can teach them that it's appropriate to ask someone if they're feeling better if they've been sick, or that the " right " thing to do to take a sick animal to the vet but you can never make someone truly feel anything. That's all I'm saying. If the " hi, how are you? " type of exchanges must be taught systematically and remembered by the child through something like rote memory, that's fine and they will appear " normal, " but you can never really get someone to care how the other person is. See what I am trying to express? I guess an important point I'd like to make is that I believe autism is more than the visible outward symptoms.

So let's say you have a cold and take DayQuil (the old kind with sudafed in it that actually worked) and then say the cold is gone (you've been " cured " ) because the symptoms have disappeared with the treatment you received. The difference with autism is that it never " clears up " on its own and the individual will need to continually reflect on what they've been taught with regards to social norms, ADLs, etc. whereas most neurotypical people will have these traits come naturally to them. I bet with some adults who have autism these things can become " second nature " after a while, but I would guess that those people are not the norm.

This, of course, is pure speculation on my part- and I'd love to hear from the adults on this list who have autism what they think about this viewpoint. If I'm wrong, I'd love to hear that. I'm always interested in learning more about the " other side's " perspective. As a neurotype I can't honestly ever profess to know, and good God if I can get some perspective on what's really going on inside my 9 year old's head, maybe we can find a method which will work better, or more efficiently for him!

On 3/14/07, cubicmonica <cubicmonica@...> wrote:

Our local support group is part of a larger group that supports Southern California (TACA). They have an annual meeting of recovered kids. I have never attended but I have heard others share how encouraging it is to see. There are dozens that have lost a diagnosis.I saw clips from I believe a DAN conference one time where they had about 10 kids that recovered from autism. They showed video clips of each the children during their therapy sessions or in daily family life and there was no doubt they were autistic. Then they showed clips years later when they are considered " indistinguishable " . They also had all the kids up on stage being interviewed by Lou Diamond . They sure looked like they were no longer autistic.One of the kids on spotlighted was the son of a lady I know. When my son was first diagnosed almost 6 years ago, my counselor gave me her number to contact her. I met her and she would share what improvements her child was making and her frustrations at getting services. Shortly after, my son attended the same special needs school as her son. I have no doubt this child was autistic. Now, years later her son has lost his diagnosis. I would say he still has residual issues but they are very minor and not much different than issues typical kids may have.I fully believe a child can recover from autism. I myself am dyslexic but as long as I don't eat food additives, I no longer make reversals. > >> > We recently lost our Autism DX, to non disabled, has anyone else come

> > across this.> >> > > >>

[Guest guest]

> While I don't think neurological differences are bad, and I would go

so far as to say some autistic traits can be gifts, I do think that

intervention to help the autistic person overcome the challenges of

their " disability " is a worthwhile endeavor.

>

> I hope I didn't step on anyone's toes, there!

>

That makes perfect sense to me. We all have to learn skills to get

along in this world. Teaching ASD kids those kinds of skill is the

normal and sensible thing to do, even if our ASD kids have to work

harder at acquiring some of those skills. My son does learns some

skills (such as being honest, not talking to strangers and applying

math to everyday situations) without even trying. There are other NT

kids for which these skills are hard to learn, but no one would say we

shouldn't teach them, just because they don't come naturally. The same

holds true for ASD kids -- we teach them what it is useful to know.

[Guest guest]

i had a dr say that my son isnt pdd cuz he makes eye contact and blah blah blah .nut yet he is in an autism class with teachers that have taught autistic kids for yrs aon end over 20 yrs for the one ladyand she was like basically wtf ...yea he may look at the dr but he was more figedy when he does he was more wound that day my son is more outgoing than my other but i still believe he is the pdd just because in that one hour visit that they can change a dignosis(although they didnt drop it so he can still get the help he needs) soemtiems symptoms can be almost non existant with kids like i look at my son and i am like wow he is like the other kids then i get aorund the other kids and i see even though the sysptoms arnt as strong one day they are still there like he may be talking to the kids but he eally wasnt intercating with them he wasnt actually in a converation. so i understand what u are saying with the discription esp the

dayquil one lol the old one when it actually worked lol

Re: Re: Has anyone lost their Educational Dx, of Autism lately ?

Hi ladies,

I don't think my point came across clearly. I'll do my long-winded attempt at an explanation.

A diagnosis is a label for a set of symptoms, nothing more. The main purpose of a diagnosis is to determine a starting point for some sort of theraputic intervention. Yes, when those symptoms are targeted with therapy they can and sometimes do eventually go away.

Accepting that there is a genetic component to Autism which is triggered by an environmental factor, which is a theory that I do accept, then there would always be the biological component, separate of the symptoms. In other words, I believe that it's always in there regardless of the outward signs of a well-adjusted person who may no longer have the diagnosis (since a diagnosis is a term for a cluster of symptoms- no outward symptoms = the potential for no diagnosis). You're not always going to teach someone true empathy, but you can teach them that it's appropriate to ask someone if they're feeling better if they've been sick, or that the "right" thing to do to take a sick animal to the vet but you can never make someone truly feel anything. That's all I'm saying. If the "hi, how are you?" type of exchanges must be taught systematically and remembered by the child through something like rote memory, that's fine and they will appear "normal," but you can

never really get someone to care how the other person is. See what I am trying to express? I guess an important point I'd like to make is that I believe autism is more than the visible outward symptoms.

So let's say you have a cold and take DayQuil (the old kind with sudafed in it that actually worked) and then say the cold is gone (you've been "cured") because the symptoms have disappeared with the treatment you received. The difference with autism is that it never "clears up" on its own and the individual will need to continually reflect on what they've been taught with regards to social norms, ADLs, etc. whereas most neurotypical people will have these traits come naturally to them. I bet with some adults who have autism these things can become "second nature" after a while, but I would guess that those people are not the norm.

This, of course, is pure speculation on my part- and I'd love to hear from the adults on this list who have autism what they think about this viewpoint. If I'm wrong, I'd love to hear that. I'm always interested in learning more about the "other side's" perspective. As a neurotype I can't honestly ever profess to know, and good God if I can get some perspective on what's really going on inside my 9 year old's head, maybe we can find a method which will work better, or more efficiently for him!

On 3/14/07, cubicmonica <cubicmonica> wrote:

Our local support group is part of a larger group that supports Southern California (TACA). They have an annual meeting of recovered kids. I have never attended but I have heard others share how encouraging it is to see. There are dozens that have lost a diagnosis.I saw clips from I believe a DAN conference one time where they had about 10 kids that recovered from autism. They showed video clips of each the children during their therapy sessions or in daily family life and there was no doubt they were autistic. Then they showed clips years later when they are considered "indistinguishable". They also had all the kids up on stage being interviewed by Lou Diamond . They sure looked like they were no longer autistic.One of the kids on spotlighted was the son of a lady I know. When my son was first diagnosed almost 6 years ago, my counselor gave me her number to contact her. I met her and she would share

what improvements her child was making and her frustrations at getting services. Shortly after, my son attended the same special needs school as her son. I have no doubt this child was autistic. Now, years later her son has lost his diagnosis. I would say he still has residual issues but they are very minor and not much different than issues typical kids may have.I fully believe a child can recover from autism. I myself am dyslexic but as long as I don't eat food additives, I no longer make reversals. > >> > We recently lost our Autism DX, to non disabled, has anyone else come > > across this.> >> > > >>

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[Guest guest]

I do not believe autistics lack empathy. I believe they have

difficulty understanding what is going on unless it is explained just

right or may lack the ability to express it but internally they feel

very deeply. I heard a talk one time by a DAN doctor that explained

autism in one sentence. It is the mismanagement of internal and

external stimuli. Just because one doesn't get the signals that one

is unhappy doesn't mean they do not care.

My asperger son one time wrote a very horrible poem about principals

as a joke. He copied it and gave it to a number of his friends.

Needless to say, it found it's way to the principal which is how I

found out about it. What surprised me the most is one of kids he

gave it to has a dad that is a principal at another school. I asked

him if he realized how hurtful that was to his friend. He seemed

oblivious. I asked him what he would feel like if someone wrote

something terrible about accountants (I am an accountant) such as

they are all criminals ready to steal other people's money. All of a

sudden he understood and started crying. He said he felt really bad

and asked how he can make his friend feel better. Of my 5 kids (2 on

the spectrum & 3 NT), I find my asperger son to have the most empathy

of all of us.

I too am aspergers. I can tell you right now I have 2 friends going

through some really difficult times in their life and I have a hard

time keeping my mind on work because I hurt so much for them. When I

talk to them though, I have a hard time addressing these problems

because it is just too painful and I feel so awkward as to how to

act. Dealing with emotions is so messy and I'm afraid I would just

make matters worse by doing or saying the wrong thing. Some days I

cannot watch the news because I get too engrossed in the sad stories

that it makes me want to shut down. I suspect those that are lower

functioning have a much better understanding of what is going on than

is obvious but it is because they are over-empathetic that they avoid

dealing with it.

I have never had any form of therapy. I was raised as the youngest

child of 3 and went to a Catholic private elementary school then

public Jr. & Sr. high. Early on, my parents were told I was probably

mentally retarded but they refused to believe it and never had me

assessed. I was oblivious to much of what went on around me socially

throughout my elementary school years. At some point, I all of a

sudden became more aware. I'm not saying my aspergers went away but

the heavy fog became more of a moderate fog. I cannot attribute this

to anything but puberty. With this change came more social awareness

and a lessening of my sensory issues. Looking back, I don't think

anything changed as far as empathy except that I was able to

understand more (receive the right signals) as to when others were

feeling hurt. The next time period in my life where the fog broke up

more is when I was in my 20's and I discovered how MSG affected me.

Once out of my diet, I was better at getting social cues and my

sensory issues lessened even more. I am now in my 40's and

continuing to improve due to finding more foods that affect me. I am

still aspergers but am functioning quite well with a combination of

permanently reduced severity of my condition since childhood,

removing the foods that make it worse and learning how to compensate.

The real question here is how is recovering defined as. If one says

they are a recovered alcoholic, we all knows what will happen if he

has a drink again. If someone has had surgery to remove cancer, they

are said to be cancer-free but there is still monitoring to make sure

it does not come back. If someone has asthma but finds their

symptoms are gone if they remove dairy from their diet, are they

still considered having asthma even though they no longer have

symptoms simply because it is diet-controlled? So in order to be

classified as recovered, does that mean it is gone and cannot come

back, it is gone but could come back if there is new injury (ie new

environmental poisoning), it is gone but if you take a wrong step

(such as eat gluten) it will come back or is recovery simply defined

as others would non suspect even though it is still there under the

surface?

When many of us think of therapy we think of ABA. ABA is basically

practicing the right thing to do or say in reponse to being told what

to do or according to a script. It does not come from the child's

reasoning but is a memorized response. With this as the primary form

of therapy a child has, I would think one that is considered

recovered is simply one that has learned how to fool those around

them that they are " normal " .

RDI (Relationship Development Intervention) on the other hand

intrigues me. It's basic premise is that autism is poor

communication between the sections of the brain. Studies of the

brain have found that if you stimulate these connections, you can re-

activate connections. They have also found in situations such as in

an excited anticipation, these connections are active longer and

therefore can do the work of making the proper connections. The

activities done have this goal in mind. I have been haphazardly

doing RDI with my low-functioning autistic son since the summer (no

consultant and only when I have time and energy). I have found just

applying some of the principles has really helped my son. Instead of

having tantrums when something is different, he seems to thrive on a

change in plans. Instead of wanting to run off doing his own thing,

he has an interest in what I am doing and wants to join in. This is

not a rote, memorized action but a choice he makes. Just seeing what

improvement he has made shows me that the brain can in fact make

repairs and maybe there is hope that there will be a day where he is

recovered. Not the type of recovered where someone that doesn't know

him well could be fooled but to where he is no different that the

other kids.

> > > >

> > > > We recently lost our Autism DX, to non disabled, has anyone

> > else come

> > > > across this.

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Hi ,

Thanks for the explanation! I think what you're describing is similar to my husband- an adult w/HFA. He received 5 years of c-b therapy as a young adult. In a sense he is "indistinguishable from his peers," but that's only because he's a scientist and all his peers are "funny!" LOL

The "recovery" that is so interesting and inspiring to me is different than the masking of symptoms that you describe below. The "recovery" of autistic individuals is usually achieved through intensive EARLY intervention that actually helps the young, pliable brain to rewire itself. Perhaps you've read that autistic brains are heavy on the local connections (white matter) and weak on the longer-distance connections (i.e. communication within the brain from hemisphere to hemisphere). That's where rewiring comes in! The underlying genes (I assume there ARE underlying genes involved in autism) will still be present, but the way those genes are expressed in physiological brain pathology can be reversed or remediated.

(My apologies for oversimplifying the brain stuff!)

Hope that helps!

(mom to a special little boy, and wife to special man)

*****************

Hi ladies,I don't think my point came across clearly. I'll do my long-winded attemptat an explanation. :)A diagnosis is a label for a set of symptoms, nothing more. The main purposeof a diagnosis is to determine a starting point for some sort of theraputicintervention. Yes, when those symptoms are targeted with therapy they canand sometimes do eventually go away.Accepting that there is a genetic component to Autism which is triggered byan environmental factor, which is a theory that I do accept, then therewould always be the biological component, separate of the symptoms. In otherwords, I believe that it's always in there regardless of the outward signsof a well-adjusted person who may no longer have the diagnosis (since adiagnosis is a term for a cluster of symptoms- no outward symptoms = thepotential for no diagnosis). You're not always going to teach someone trueempathy, but you can teach them that it's appropriate to ask someone ifthey're feeling better if they've been sick, or that the "right" thing to doto take a sick animal to the vet but you can never make someone truly feelanything. That's all I'm saying. If the "hi, how are you?" type of exchangesmust be taught systematically and remembered by the child through somethinglike rote memory, that's fine and they will appear "normal," but you cannever really get someone to care how the other person is. See what I amtrying to express? I guess an important point I'd like to make is that Ibelieve autism is more than the visible outward symptoms.So let's say you have a cold and take DayQuil (the old kind with sudafed init that actually worked) and then say the cold is gone (you've been"cured") because the symptoms have disappeared with the treatment youreceived. The difference with autism is that it never "clears up" on its ownand the individual will need to continually reflect on what they've beentaught with regards to social norms, ADLs, etc. whereas most neurotypicalpeople will have these traits come naturally to them. I bet with some adultswho have autism these things can become "second nature" after a while, but Iwould guess that those people are not the norm.This, of course, is pure speculation on my part- and I'd love to hear fromthe adults on this list who have autism what they think about thisviewpoint. If I'm wrong, I'd love to hear that. I'm always interested inlearning more about the "other side's" perspective. As a neurotype I can'thonestly ever profess to know, and good God if I can get some perspective onwhat's really going on inside my 9 year old's head, maybe we can find amethod which will work better, or more efficiently for him!