Recovery anyone? | Autism PDD
I have not read what everybody else wrote because I do not want it to affect what I will say "HELL YA THEY R RECOVERED"!!!! Shelley.... I totally believe autism is a "symptomatic" state... if there are no more "symptoms", than what else do u have??????????I guess I will stick to my original - that is if you are truly ' AUTISM ' and not the lesser pddnos or hfa or as, then you will ALWAYS be. I have questioned 50 years worth of experienced ph.d's in this feild and they say it is true - NOW for those with hfa, as, pddnos, your hopes are WAY BRIGHTER, and that is most of you, so HAVE HOPE!"The doctors have stopped calling him names" That struck me as really funny for some reason. That was a great way to explain it especially for people like me who don't spend tons of time reading up on all the theories etc. Anyway, my one big concern is still that: having a child no longer meeting the criteria for autism which is what we will consider recovered, How do we know how difficult it is for them to keep up "apperances" and how stressful it may be and how that stress will come out in other ways. I guess I am thinking about lots of different things that Gtto has written. I know we all have kids at totally different "functioning" levels, but... they do all have one big common denominator. I don't ever want Ethan to "perform" to be acceptable by others at his own expense. Know what I mean? If he needs to flap or stare or line things up, then who an I to say no. That would be like telling me I couldn't pace around the kitchen or have a cigarette occasionally, but expect me to give a presentation in front of 1000 people. I don't know, maybe I am over analyzing this. I am getting therapy for Ethan. Very minimal, though. He is progressing. I just don't know anymore how much pressure is o.k. just to meet social norms. I mean really, who made them up anyway. Oh, is there a full moon? I guess I am just angry that there is so much pressure to be the same as everyone else. I beleive Jasper will always be wired the way he is. He will always have an
"autistic brain". However, I really believe that all the early interventons we
get for our kids actually help to re-map the brain and build neural
connections that weren't there before, therefore giving them more ability
to function in our world. We are helping them to develop to their fullest
potential.
I think Sarah is a bright shining star and an an amazing example of how
wonderfully some children can grow and develop with intensive
intervention.
I would probably say that she has autism, but has developed out of most
of her symptoms with intensive therapy. She is thriving and nearly
indistinguishable from some of her NT peers. She is bright and capable,
and a wonderful exaple of a child with autism fufilling her potential.
I think that's everyone's dream. I think our kids will always will always
have some traits and behaviors, or just ways of seeing the world. But
they have more resources available to them than any other generaton
before them. They are going to redefine what autism looks like in adults
and be living examples of just how far kids can grow. Some children will
appear NT, some will not. But I think they will each have some sort of
success story to share when all is said and done.
[QUOTE=2nd round mom]Until the time that medical science has some test and can show me the befores and afters of brain scans or whatever they would do, then no, I don't believe recovery is possible. Really, how could a neurological difference just dissapear? As we all know, there are so many levels of "functioning " to begin with. I think some kids are better able to learn coping skills. I "can" do lots of things for the benefit of others. Doesn't mean I am at all comfortable doing them, or that I don't pay for it somewhere else. And I am wired completely normal
you don't sound argumentative at all - but I think you are confusing the terms "cure" and "recovery". Here's a definition of recover that I particularly like.
No, I think I would consider Ali as doing a wonderful job coping. I think ASD is something you can manage but not ever completely recover from....same way I feel about alcoholism and eating disorders and depression and so much else. Those problems, challenges, and predisposition for certain things will always be there even if it is so well managed no one else can see them or you, yourself barely remember what it was like before.....it stays, but it may get easier. That is just my personal feeling.
I often wonder why Sarah did so well with ABA and some kids dont.
she had so many labels..
First was autism~straight forward label..not classic but just your child has autism..
Second label stated pdd..then added it was autism and she was mild to moderate.
Then came autism probably high functioning because she didnt have obvious stims though she did have some she wasnt showing them during evaluation and most resolved quickly...
after 3 years of ABA/Speech therapy the school stated she scored to low to be considered autistic and gave her the provisional autism label with savant abilities.
The thing that improved the most was her total disconnection with us and others, animals, toys or environment..she never looked at us, or looked for us at all...My husband or oldest daughter could be gone out of town for a week for camp or business and she never noticed them missing or responded when they returned.
I worked 12-16 hour shifts as weekend nurse and when I returned home at night she never looked up at me at all. She never said mama till ABA taught her to after age 3 and never engaged with us till 4...she wasnt completely potty trained till after 5 years old and never spoke unless prompted..usually 2-3 words only. Her biggest progress has been this last year..the pragmatics smoothed out..her spontaneous language took off and her engaging us and wanting us kicked in full time:)
She will be 7 years old on 7/27 this month so realize she has had many years of help. Maturity could be every bit as important as the therapy itself..my gut tells me the ABA laid the foundation for her to learn and her own personality is kicking in now and taking over and she is becoming very typical. She never had major behavioral problems or sensory issues..very passive, indifferent and nonmotivated were her biggests issues..now resolved.
Last night she told me she wanted me to sleep with her because she loved & missed me so much and didnt want to go to bed without me because she would be too lonely. Why would our kids be any different. I hope I am making sense, not sounding like I want to be negative or argue or anything. No I would not considered them recovered. I would say that they graduated
from their programs and interventions. That is my goal and I think Sarah is
a fine example of that. I spent part of the 4th of July with a family whose
two sons age 15 and age 9 who have "graduated" from their interventions.
On the surface they look great but the parents keep a very careful eye on
them in social situations. They also are very selective as to what sports/
schools the children attend. The youngest still sees a private ST once a
week. The oldest does have a Psych to discuss stuff with on a need to bases.
My biggest hope for my child is to be able to cope in society independantly. I think that wanting something like this would not take away from the quirks that I see everyday that are so much a part of his personality.
If what you described is recovery then there are documented cases of such people that function just fine with no supports. So if what you describe is actually recovery then....yes it exists. These people still have issues though. Who doesn't now days though?
I don't know if I would consider them recovered though. I have ADHD and I have learned how to cope without meds....but I still have ADHD and there is still residual effects that show in just my every day conversation, personality or the way I do things or get stuck on something and frustrated etc.
I would consider these people....hmmmm....adapted??
Karrie
woodsman, I think you're a prime example of how kids with autism "recover". At some point, you became aware that you had differences that set you apart from your peers. Some time later, you became motivated to overcome those differences in order to 'fit in' and lead a more typical life. Self awareness and motivation appear to be the keys. I agree, that once autistic, always autistic, but with enough self awareness and motivation, and providing the sensory challenges are mild enough that they can be supressed by sheer will, and if the language processing is sufficient for near normal communication, than an autistic kid can certainly "decide" to no longer act autistic in the same way that Dustin Hoffman "decided" to act autistic - different motivations, but Dustin is no more autistic than you are neurotypical. We can all emulate behaviors, surpress urges, apply logic to social situations, we can all "act" - all which lends to the appearance of normalcy, or "recovery". I think you are a very pertinent example for many of us.[QUOTE=autumn]I guess I will stick to my original - that is if you are truly ' AUTISM ' and not the lesser pddnos or hfa or as, then you will ALWAYS be. I have questioned 50 years worth of experienced ph.d's in this feild and they say it is true - NOW for those with hfa, as, pddnos, your hopes are WAY BRIGHTER, and that is most of you, so HAVE HOPE![/QUOTE]
My son TRULY met all critera for Autism and was diagnosed as such by a team that diagnosis autism everyday. Just recently he was re-evalutated by a developmental pediatrician here at Fort Campbell (was necessary for school) and was diagnosed with PDD-NOS instead of Autism. YES he is still very much affected. BUT....he's not anything like he was when he was 3 and diagnosed initally. He also recently had all special education services taken away because he doesn't qualify anymore. He starts kindergarden in August. I have countless issues that I still deal with at home though. Luckily so far there have been no major issues at school. I agree with Fred when he posted about how we will never know how much was from therapies versus maturity though. I really feel like we get what we get...... to some extent.
My first thought was taking medical histories...
Q Do you have a history of Diabetes?
A NO
Q I see you're taking Glucophage, a medication to treat diabetes. Are you sure your previous doc has never mentioned it?
A Oh yes...About 2 years ago, my blood sugars were really high, but I lost weight and changed my diet. Those changes, along with my medicine, keep my blood sugar perfect!
******Okay...This patient most likely has controlled Type II or Non-insulin dependent diabetes. He/She denies it because they are better now...some might think cured...But the bottom line is they still have diabetes.
By the way, Fred and others, I'm not saying that diabetes is the same as autism. I am saying that I don't think that "cure" may be the best way to label the best possible future outcome of our kids...Hmmmm....
I am the grandma in our situation--his home away from home. 30 yrs. of ele. teaching experience (none that prepared me for PDD).
Our grandson has been in some sort of therapy--speech, OT for sensory, social, etc. since he was 3 and is now 9. He began to be ok in Kdg. Mainstreamed with aide. 1st grade--totally mainstreamed--no aide and did fine.
Changed schools--mistake. Back to resource and second grade was less than wonderful. So, this summer, I'm tutoring him (Gammy school) 3 days a week. He's doing wonderfully! Goes to a karate school daycare where they work on socialization, how to handle bullying, character building, etc. 2 days a week.
We, too, have considered homeschooling, but have been advised against it. Boy Scouts has helped with socialization.
Has he recovered? We just focus on how far he's come. When we began therapy at age 3, he wasn't talking and hard to handle. After 3 weeks in OT, he began to talk, and the flood gates opened. Now--almost normal speech, but social continues to be a challenge. However, he is extremely loving and sweet.
So, for now, we're thrilled with his progress. One day at a time has worked well for us, and we are extremely hopeful. We have a wonderful child psychiatrist who has helped us experiment with a variety of meds to work on focusing, etc.We just try to meet his needs as they occur.
A good support group has been important--friends, family,
Hang in there, Heidi
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I read a book when I first started here that I found revolting. It was like "How to turn your autistic kid into an extrovert like you!" It was written by someone with a great reputation as a therapist, but frankly it made me sick. She talked about blatantly bribing kids to be your kid's friends with huge parties and lavish playdates. It was very, very Hollywood, and rah, rah, rah.
Our kids will maintain the integrity of their identity throughout life, I think.
I think T has "residual autism," or preemie hangover, or whatever you want to call it. She needs academic help. She needs social skills. She will get them. I don't want to call it recovery, now, or in the future. Maybe it is more appropriate to consider it a gradual reallocation of brain usage?
Many of her symptoms already are more on the level of personality traits at this time. But ... it is possible we will find that as more demand is placed on her brain, her capacity for some functions is truly limited. Like planning and executive function. Maybe not, who knows?
But she will always be an introvert, and self-centered, and not the greatest conversationalist on the block. She will always be a little bit obsessive-compulsive, too. Partly because of who SHE is, and partly because of who WE are.
Recovery? No. Maturation, change, reallocation.
Maybe that is too theoretical a distinction.
Have you guys read Send In The Idiots, yet? It is a fascinating account ... by someone whom you might or might not categorize as "recovered." The guy has a law degree AND "almost" a PhD in Philosophy. And he is Pakistani and has lived around the world.
ETA: it is called "Pervasive Developemental DELAY," not disability. Things happen LATER. Temple Grandin feels she is still growing in her what, 6th decade?
more carefully defined and that some diagnosis that are, say, PDD-NOS,
may start to get a name that entails more specifics. I do think recovery is
possible, but I think I view it in terms of the overall diagnosis not being
accurate.
For example, my ds was diagnosed with PDD-NOS. However, his dev.
ped. thinks that a diagnosis of pathological demand avoidance syndrome
fits him better. But, this is not a diagnosis currently recognized in the
DMV-IV, so the PDD-NOS dagnosis remains.
This kid has made amazing strides in the past 2 years. And he has
graduated from his therapies. He'll be going to typical preschool with a
shadow who will be phased out, and then it's on to typical preschool. I
think more research needs to be done in order to better define our
children's issues.
Just my thought...Funny you should say that about homeschooling Fred because I have been thinking very strongly on it. School has actually created some problems that weren't there before. That may be something in the future. Recorery, adaptation, yes I think its very possible.
My family and friends use this term all the time..oh she's recovered or she is fine now and I though she is doing great she still has issues and will for life..but hopefully no more than I do or most nt people have..I never go around and say..she is a recovering from autism. But I feel wierd saying autistic since she doesnt quiet fit this mode anymore nor does she fit aspergers..yet !
The term she is recovering from autism almost fits her but I am afraid to use it since everyone would look at her under a microscope to find quirks..and they would:P Truth is: sometimes I wish I could just leave the autism world behind and say yeah she is recovered in my head and live a normal life without autism hanging over her head & always worried sick what other issues are going to crop us now that she has room for some
I know that is wrong
..this is the first summer without interventions of any kind and I am feeling she is just fine for the first time in her young life. I see her as a normal little girl with no behavioral problems..language is near perfect.. I wish I had a dig. camcorder to show her to get feedback but dont..yet:) I guess we are on the fence right now and I am scared which way she could go.. Well I believe the person will interpret the input from the world if they're ASD in an ASD way. I think they can become tolerant and have an understanding of what the "rules" are in society and how to act NT. To me, it's like becoming a man from a girl. The interpretation will always come from being a woman and is habitually filtered and presented through another perspective. So I think the core issues are still there even if you learn how to groom your "fake" moustache. And, likely more apt to appear in situations that haven't been taught. [QUOTE=Linda11567]Funny you should say that about homeschooling Fred because I have been thinking very strongly on it. School has actually created some problems that weren't there before. That may be something in the future. Recorery, adaptation, yes I think its very possible.[/QUOTE] Not sure school CAUSES the problems, so much as OBVIATES them ... but I KWYM for sure! Shelley, I think Sarah is recovered. I think you've done a remarkable job, and her life will be as typical as any of our lives are. She will have additional challenges, as all of us with neurological differences have, but she has the basic tool kit to manage these challenges, and an insightful mother who will always be there to advocate for her special needs as they arise. She can learn on her own. She's demonstrably bright. She has differences from typical kids, but these differences are not pathological and should not be viewed as such. Just pay attention to her ability to learn in a group environment and through auditory channels and make sure that her self esteem remains intact. At some point, she may be singled out for her 'differences', as we all were, in junior high or thereabouts, but this is nothing that should stand in her way and is a fact of life for many and we came through it ok. But do get a digicam and do keep up with the community because you are a beacon of hope for many people on this board, I can assure you of that. Shelley, I would consider Sarah more NT than autistic. According to the classifications, she does not quite fit the classical mode. She has the appropriate foundation to build a lot on to live a typical independent life. She functions well amongst NT kids. She is not so hyper-active that she needs a one on one to redirect her often. She can learn in a general classroom with several kids. She can converse, yes, she is quiet around kids, she will get more comfortable with them and participate more as time goes bye. If we can get most autistic kids to the level that Sarah is now, it would be a wonderful world for parents. I would treat sarah like an NT child give her challenges, have high expectations of her and teach/provide her with tools to compensate for her weaknesses. There is no perfect human being. Everybody compensates for one thing or another. I would be aware that some things might be difficult for her more than her peers down the line but I would not worry so much about her. If the label autistic makes people to lower their expectations of her and not challenge her to her capability, I would not use it. Concernedpa. Fred, I quite agree with you. If there is a picture of recovery, Sarah is. Your girls are getting close. I hope my DS continues to improve as well as all our lovely kids. Kudos to all you wonderful parents. The day will come when we will understand autism better and be able to help our kids without mortgaging our homes and do hit or miss treatment and therapy. Concernedpa. Thanks everyone:) I do not like to brag at all and know the tremendous challenges dealing with autism. I know how scared and helpless it feels to worry constantly am I doing enough.....I feel all the emotions you guys feel with your kids and only want to inspire you and tell her story the best I can..I am an average mom..not too bright and no different than anyone on this board..I know all our kids are different and respond differently to therapies..I dont know why we got lucky..and I still feel the dispair deep inside as I did the day she got diagnosed...I still have pictures of her flat expression all around my house to remind me of how affected she was. We all need hope and success stories to strive for and if I can do that it is my pleasure:) I have tapes of Sarah at <3 and all through therapy to show her progress and would love to combine them into one to send out to everyone:) One day I just may:) IMHO Once you are classically autistic, you will always be classically autistic, if you really are classically autistic. I do believe in recovery. My definition of recovery is that a child no longer scores on the autism spectrum using an autism diagnostic test. Shelley, Your Sarah is a great example of how an engaged parent and intervention can fullfill a child's potential and gifts! I need to hear your story as often as possible. I would love to see your before/after tapes. If my child made the gains yours has made I would most definitely consider him recovered. I hope that I would do as much as you do to inspire others that recovery is possible. I believe in SOME cases of kids under ASD umbrella (provided they receive enough therapy as early as possible), there is a good chance to have a fruitful, enjoyable lives. Will they recover? It depends what you define recovery. Their brain for sure remains autistic but the quality of their lives could potentially be as well or even better than some of their "normal" peers. Daddy Shelley what was Sarah's diagnosis? PDDNOS? HFA? Where on the range was she orignally and what age? By the way I am VERY GLAD she is doign so well! I am still pretty new to this, but I always say that DS is overcoming a developmental delay. I may say that forever or change that to say he has overcome a developmental delay. I think that the ASD is so broad and everchanging, it seems. I sometimes feel that DS really just has a processing delay and that the behavioral and social issues are a result of coping with the aforementioned delay, but we will see. I continue therapy and will do all I can for him, just like you did Shelley, and I hope I have the success that you have had with Sarah. I don't know about recovered, or overcoming, I guess it is just semantics, but I think that any way you say it, Sarah and her Mother are an ASD success!!!
And Success is AWSOME Just curious and wanting to hear others their intepretations of recovery from autism.... I know that autism is part of our kids so a cure would be erasing part of them somehow and it is not possible:) .....but do you believe in recovery? If a child can overcome their many behavioral issues and obstacles and be told they no longer have enough symptoms to be labelled autistic anymore ... be totally mainstreamed in school successfully & fair chance to live a independent life with little help from anyone ...would you considered them recovered? Please no stones:) I break easily!
one thing that's important to keep in mind is that, while Shelley did an amazing amount of work with Sarah and rightfully credits ABA with much of her apparent "recovery", we'll never know how much of her progress was due to maturity and how much was due to the level of interventions she receieved. I want to mention this, because some kids will not achieve this level of functioning no matter what the parents do, and it's important that parents never feel that, if they had only done this, that, or the other, or done more hours, or tried a different therapy, that they could have ended up like Sarah. This is not to say that we shouldn't all try and do the best that we can, but we should also be careful not to blame ourselves for failing to recover our children and to not feel like we failed our children because we didn't do "enough" or that there is some magic bullet that we need to discover and that we should try everything imaginable until that magic bullet is found. We all feel enough parental guilt. Please, celebrate Sarah's amazing success in overcoming her challenges, but realize that this does not mean that most, or perhaps any, of our kids could acheive the same level by following her blueprint for success. We all do what we can, but some kids, no matter what, will not "recover" and parents of those children should not be made to feel that they somehow failed their children by not finding the right therapy or the right dosage of therapy. These feelings would never be intentionally conveyed, of course, but can be a byproduct of some of these success stories. JMHO - from a parent who did NOTHING in the way of therapy for their children before three, and very little after that. talk about guilt
This thread addresses the concerns I so poorly posted earlier. This is it exactly. I suppose I am looking for the magic bullet. I am looking for the proper path for my son. And I can only hope that I choose the right one. Pin the tail on the donkey. And don't forget the blindfold.
Recovery. Maybe not recovery so much....but rather becoming "NT Kids with a Twist". The twist makes them different, but also wonderful!
I graduated high school, collage and now work for a trucking company driving forklifts. I own a small house on the lake with woods behind it, as was my dream, and im only 24!
Im ahead of my peer group as far as home ownership, have nice things, and a bran new car I just bought after a deer vs. car accident!
Anyways, to this day I still have problems that will last forever. I have friends but often have trouble making new ones. Those that are around me for extended periods notice my odd behavior at times, im very routine oriented and wont even hang out with anybody mon-fri as those are my work days. On weekends im more spontanios, often camping, hiking, fishing ect. I go to parties, and used to go to bars b4 I realized how much I hate the atmpsphere so ppl stopped dragging me to them. I cant get a girlfriend, dont know how to date, ive tryed for years and essentally gave up for now, I dont wanna be alone my whole life but more likly I will be. I hate having too much going on around me so at work cause I work at a very buissy wherehouse I am often at a high level of stress, and quick to loose my temper as a result, today they call that meltdown, although I dont usually loose it at work, only 1 time. I live alone. All my friends I had growing up hate me, and have since high school, interestingly enough towards the end of high school I was kinda popular ironicly. When their is a huge gathering everybody socializes and I spend my time tending the fire, or if their is not a fire I need something to do with my hands and start drinking, sometimes excessivly, only cause i need the repetitive motion of sipping on my beer, recently I saw this as a problem and have stopped, i rairly drink now aw a result.
I still stimm, but do so privatly, eather rocking or pacing back and forth. I get uptight when their are ppl in my house, and dont sit down. I dont recognize sarcasm which is bad at work, so everyone picks on me, despite being the top producing person because I dont socialize, just work, and im younger then most so I have more energy. I always approach things sytematicly, step by step always predictable, as I like life, and cant stand when something does not go according to plan, even at a supermarket or anywhere in public, i have all change and doller bills in order by denomination so i can just quickly pay exact change, super fast and get in and get out. I work at a job where some dont even have a high school education, ill never get a job that I can use my degree in, so im under acheiving. I have a love for physics (specificaly E=MC2 and the like) and history (wwII) and ppl cant beleive how I demonstrate my knowledge of physics as they usually dont even understand. SOmetimes I talk oddly, or innappropratly. Growing up I behaved badly, would get into fist fights cause I was being bullied and got angry quickly, was bossy and mean to my childhood friends (thats y they dont like me now) and as I got older got into trouble by the police a few times for possession of marijuana and DWI 
Im very ashaimed, but at that time I thought those would help me socialize, I quit years ago and my life has improved, those were crutches.
But despite my problems, I always beleive ill do better then most, cause I have a plan for the future, and have followed it to a T so far, despite problems here and their, I make good investments and am efficent with my $$, i account for every penny, and am ready if something financially bad happens, never been late on a bill,
I have more but this is too long. I really think now, ive outgrown the HFA label, im too social (relativly speaking) I guess I fall into aspringers, tho after age 12 when I mainstreamed the DR never took away my HFA and I never saw another 1 again, it was basicly swept under the rug and forgotton by my parents, and I did not wanna talk about it until only recently, and only on here.
Your kids, as they age will have problems, but I hope in the end it will motivate them, and they may outdoo their peers as I have done. Good luck!
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