Off the spectrum | Autism PDD
That is wonderful:)
She should join our board...she would be so inspiring for parents:) I would love to pick her brain!
Thanks for sharing!
Karrie
Please don't take any of this the wrong way, I'm not trying in any way to rain on anyone's parade. I'm delighted these parents received this wonderful news.
But, Hmmm - I have mixed feelings about this. Since I don't believe there is a cure, I have a hard time with this. I've been told Anthony may eventually have no dx. After that appointment, I was really satisfied for a few days. While my heart wants to embrace this, my head tells me that can't be possible. I call it being a realist - DH calls me a pessimist. Anthony's brain is wired different and it always will be. He was born the way he is - how do you change that? It's like being born without a limb and suddenly growing one (that's a terrible example but all I could think of).
It makes me wonder, are they just handing out this dx to children with any developmental delays? I don't know how you can lose the dx.
mamajot - I agree with you on this. I too am very happy for this family. However, my first thought was that he was probably misdiagnosed with a spectrum disorder.I don't think it's like suddenly growing a limb but I know what you mean.
The way I see is this: Let's say a child was born w/out a leg but he was given a false leg and learnt to run and ski and everything his two legged friends can do. In fact, usless you really knew him well since he was a young child learning to walk and peeped his ankles, you'd never know he'd only one leg.
I suppose you can say he's still disabled but has overcome his disability and is living like as an able bodied person? Is 'overcoming' autism a better expression - I don't know.
However, that person is still missing a limb. Even though the person can function pretty much as if the artificial limb were real, it's not. The doctor won't write in the chart that this person has "recovered" just because they now have an artificial leg to replace the one that's missing. The chart will still indicate they are missing a limb.
I do like the term "overcome." I think with early intervention and help, children can acquire the skills they need in life.
It's all kind of confusing!
I think recovery is not a bad term..if your child can overcome all the things that held him back from learning, having friends..being able to tolerate sensory issues, social issues and indistinguishable from peers than recovery does seem possible..
Even though us seasoned parents would probably see something.. but I see things in all people and not just in autism..I feel Sarah will recover and even though she may have some issues with some things I think she will have the tools to overcome them...
I think of a recovering addict..they no longer are doing the things that made them an addict but will have the wiring in the brain for life and have to take steps to overcome it...not the best analogy:P
Most of the information that I have read states that spectrum disorders stem from dysfunctional or non-existent pathways between the Hippocampus and the Pre-Frontal Cortex.
Given that the brain has been known to compensate for "abnormalities/deficiencies" in cases where parts of the brain have been damaged and other parts activate to pick up the slack I do not see why one would not assume that the same thing could happen here. That is to say that new, "non-traditional" pathways were opened allowing for this "communication" between the parts of the brain that are not "talking."
It seems feasible to me and I would call this a cure and not learning to walk with an "artificial limb" as it were. No functionality lost. Nothing displaced to get there.
I would agree that the "wiring" will always remain different, but who the hell cares? As long as it gets to the same place.
my 14 cents.
[QUOTE=ShelleyR]I think of a recovering addict..they no longer are doing the things that made them an addict but will have the wiring in the brain for life and have to take steps to overcome it...not the best analogy:P
[/QUOTE]
I actually like that anology. You do hear people say "I'm a recovering alcoholic." Are they still an alcoholic? Yes, but they have sought out treatment and recovered.
My main confusion is with a diagnosis being lifted.
OK guys - sorry for the "growing a limb" analogy - LOL. But as always - thanks for working with what I gave you. Horizon - you really took that analogy and made it work. WIMomof2 - you and I are on the same wave length. I like the term "overcome" better.
Cam - definitely something to think about!!!
I took it like Shelley's analogy...in hindsight they are a recovering autistic.
Hmmm, not sure that sounds as good as it should, lol.
Anyway, I do see what everyone else is talking about...maybe it's not so good to have the label lifted, just incase of regression...might be a lot more work if symptoms start to reappear (I'm thinking of puberty and what I have read about that.) than it would be to basically start all over and try to get people to understand that he was autistic, then wasn't, and now he is again.
You just don't have to explain autism to anyone (like schools, other doctors etc.) anymore until it seems to be presenting itself, if that should happen.
I love hearing stories like this. I hope he continues to have a happy and healthy future.HEre are the facts....
At one time he made criteria for PDD-NOS
Through early intervention or even natural progression he now NO LONGER makes critera.
It's as simple as that. Same thing with my son Adam...and I have seen it. His initial diagnosis supposively Autism...and by the book he truely made all critera...just barely...but he made it. HE now no longer makes all criteria for that so he is now labeled PDD-NOS because he still is having symptoms that interfere with his social/communication- sensory issues- etc..the list goes on.
Think of it this way For SOME REASON...not sure why....but for some reason the symptoms that this child had to warrant a diagnosis got better. Do you not see improvements in your children ever? I know I do. This child obviously started out super high functioning but still made critera. Once given early intervention he got better....just as a lot of our children do...they get better than they were initially through early intervention.
Karrie
That's awesome! Great to hear when a child gets declassified.Good news. Gives us all hope. I hope someday people would not believe what my ds has gone through in the past. I believe it. I have seen a child who obviously would have been diagnosed be NT-like except for computer obsession and slight speech issues.
Concernedpa.
Wow that is amazing. I needed to hear that this morning. I have been so down the last few days thinking about all the challenges that likely lay ahead of us. Just finding the right pre-school was very stressful, to say the least.
I have to say it again - that is just amazing. I am so happy for that little one and the family.
Tricia
BTW He didn't have any aba either.
Good - tell them to use the category "lack of coordination" as that is what gets OT paid for here! Or at least to try that one.
That is awesome!
That is great news...tell them congratulations!
And thanks for sharing...it gives me so much hope when I hear things like this and times are tough with Mason!
Hello...I have a friend that has a son that was initially diagnosed with PDD-NOS and now his label has been removed. I am so excited for them I just wanted to share. I don't belive that his child had any ABA...I think he had early intervention, then the school system and he DID have a speech delay, but has recovered from that as well. He still qualifies for OT though but the Doctor felt that he didn't make any criteria any more for PDD-NOS.
Honestly I see this kid daily and I have to agree. He seems very NT. I did not know this child when his symptoms were apparent though.
Oh yea....he's the same age as Adam
Karrie
I think it's like when they treat depression with cognitive behavior therapy, rewire the brain and the dx of depression is in the past.
[QUOTE=love my signets]In my experience there is no true recovery. They either were not ASD to begin with OR they dont fit the criteria anymore but still have something a little odd about them[/QUOTE]
There are plenty of odd people in this world that were never diagnosed or that would have never made criteria for a diagnosis so why is it that someone being odd would make you think they are not recovered? Just curious. Mainly curious because I myself have been told that I am "Odd", But I could never have made criteria in my past or even now for any diagnosis. Isn't recovery more on the lines of being able to function in society like everyone else?
Just on a note...I know the doctor that this child see's and he is GOOD. I do not believe that this child was mis-diagnosed by any means. I think he initially was borderline PDD-NOS. But enough symptoms to warrant a diagnosis. I can also tell you by the way his mother talks about him when he was younger that I dont' even question whether he was PDD-NOS. I can honestly say that he is the first child I have seen that absolutely looks NT to me. There is only ONE thing that is left over so to speak and it is this: THere are times when he is playing with other children that he becomes self absorbed and uncaring about what the other child wants. What 5 year old doens't have these issues at times though? At other times he is very caring and shares and turn takes etc. He is VERY social with people and children. Starts conversations and asks LOTS of questions.
Karrie
I consider myself odd too and I am not on the spectrum....but doesn't Greenspan seem to disagree with the idea that one can not recover. He says he has seen children over the yrs that are absolutely healthy and normal now but were clearly showing signs of serious developmental challenges.I read somewhere that brain scans of ASD children are different in that different areas light up when certain tasks or questions are posed to them as opposed to NT children. I wish one could re-test these children and compare them to NT children after they 'recover' to see if, in fact, the same areas NT children use to resolve questions and tasks are the same the former-ASD children now use. I hope I'm making sense. I have no science background so forgive me if I am using the wrong jargon.
If you look closely at people...we are all kinda odd in one way or another! :)
Mary
It's not calculated scores....It's symptoms.... and if symptoms are no longer there, then they are no longer there, and they can't possibly qualify for a diagnosis.
Karrie
my little girl, when diagnosed in Oct, 2005, was severe. She is now mild--moderate on the same tests.
Perhaps next year she will be mild. And the following year she will score not autistic. It's possible. And it's what I pray for.
This is a very interesting thread. I think autism is a condition and it can improve so much so that the person loses the 'label' yet he remains autistic always. The disorder itself and the label are two separate things in my (humble) opinion.
My son is high functioning, provisional dx received 2 months back, haven't started any therapies except for speech and that too is fortnightly thing. His language is coming in naturally. If he loses his 'autistic' characteristics in about two years, then of course he might lose the label/dx but would he become neuro typical? I do not think so. That is why people are self diagnosing themselves these days, they probably know they are different (more than just odd). That is why clinicians lament that there are so many undiagnosed cases out there who doesn't always have positive outcomes.
We look at autism and say its a disorder and then diagnose it by calculating a score? If a score is less than the minimum requirement, does that mean the child is not autistic? I don't think so, its all subjective anyway (ratings and scores). An expert clinician can see the disorder due to the impairments evident and doesn't need to sum up the scores. So the question then becomes, can a paed/psychologist see autism in someone who is recovered or so high functioning that never dxed before? I should think so. Should they then be diagnosed is entirely different matter.
That is precisely why I do not like childbrain quiz much. I do not remember the exact cut off score but lets say at 39, your child is not PDD and suddenly at 40 plus, your child starts to be on the spectrum? Its good to get some idea and to use it as a guide but I am sure a child is not given a dx on the points he scores but rather deciding if he has the disorder (I know I am probably not putting it very well). So even if he has improved so much that he dropped to 39, he might lose the label (if the label is given on this criteria) but still he would remain PDD.
Still its great to reach that point where one loses the label. This is what every parent wishes for their child. :)
Mary
Great news for the parent.
On the issue of recover, people always talk about 'autism' as if it's this known thing. Autism is a description of a set of behaviors. No cause is implied by the diagnosis - in fact, autism is the dx given when the cause of the autistic behaviors are not known. of course it is possible to "recover" from a clinical diagnosis - one that is based on observation and the presence of certain behaviors that are vaguely laid out in a diagnosistic manual. Autism is not a discrete condition and it has many causes - some known, most not. Just like "flu like symptoms" could be accounted for by a virus, bacterial infection, an allergy, or by faking it, the presence of autistic symptoms does not imply some underlying, common neurogolical configuration that all childrenw ith the diagnosis share.
If the cause of the autism is something like developmental delay - ie, for whatever reason, the kid's a late bloomer and learned to talk very late which impacted them socially and thus recieved a diagnosis of PDD-NOS - when the kid finally learns to talk well, viola, they're no longer on the spectrum.
Woo Hoo! Congratulations to that boy and his family!
Love your post, Camusa! Love your post, too, Fred!
Call it recovered, call it lose the label - call it whatever you want! (I personally think Bug is getting better at "acting nt". He does so well in public, now. Great communication, great behavior, holds it all together... Then, he often melts down once we're home - and you practically see how hard it is for him to "act" nt.
That said - if he is mastering this skill at 4 - I imagine he is only going to get better at it. Isn't life that way for all of us? You're on your best behavior at school and work and in public, then you come home and can "relax" and "be yourself"?
In my experience there is no true recovery. They either were not ASD to begin with OR they dont fit the criteria anymore but still have something a little odd about them
Who doesn't have issues or pieces???
Karrie
ya, jeeze. Im fortunate enough to have met up with the girl I went to the senior prom with, we have been hangin out on weekends, and perhapse it can be considered 'dating.' I have always missed cues when doing something like this, she always said i always seemed distant and talked to her as if she was 1 of the guys. We are hanging out this weekend, and yes, i feel akward knowing im not doing something right or missing something, but its all good.I still miss social cues at work, cant handel working with multyple ppl (my boss lets me work alone alot) i cant stand it when someone comes to help and they mess up my routine as far as how i handel the product i lifted off of the truck, i cant have ppl doing things chaoticly, seems im the only 1 with a system, or at least a pattern of how i do things (resulting in being 1 of the best employees their, thats y my boss usually gives me what I want, like tonight off
)
I still dont converse well, often will join in and jump back out, while everyone else is talking, ill go off and do my own thing
I live alone, and can never live with someone else cause i notice the smallest things
I cant handel to much going on around me, so i only go shopping when nessissary, do so quickly and will go when its not buissy or even ask my parents to pick stuff up for me.
I cant sit still and just talk to ppl, im always messin with something, usually playing with something in my hands
I still stim, tho secretly b4 bed.
I could go on, but no point, all i know is that these things will never go away, and typical ppl dont have these problems, im good at putting on a mask, but I still am very mildly effected.hmmm... facinating, ya seems like the age for kids to kind of 'snap out of it' is between 6-10 for some reason. I was rough when little and as I got older i did this, actually since my parents r not as educated as u guys r on the subject, they beleive that I am cured, when in fact one is always on the spectum once placed their to my knowledge. I dont understand the process myself, all I knew is that around 9-11 it got much easier to cope, sensory issues, tho still their could be dealt with in more socially acceptible ways and I was becomeing more receptive to how others interacted, and seeked interaction myself. Around this time, i became mainstreamed, and never talked about the 'A' word again until recently on here, but I will always, no matter how NT i may have appeared to be, or appear to be now, ill always be on that spectum, i never shed my HFA DX, cause i never saw a professional in this feild, but I would probably have AS if I did (perhapse an upgrade). I appear NT but still have issues, all ASD related, their will always be a little residual autism in anybody who improved.
[QUOTE=woodsman25]
I appear NT but still have issues, all ASD related, their will always be a little residual autism in anybody who improved.
[/QUOTE]
My point exactly.
Mary
What you described sounds alot like somebody I know who has social anxiety. That's great for the family, I hear it is a very rare thing to happen. I'd like to know the real figures for this actually.Copyright Autism-PDD.net