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The Recovery Room: Define “Autism Recovery”

LanguageBy Julie Obradovic

In my inaugural post for this column, I think it’s important to first tackle the definition of “recovery”. What recovery looks like for one person may not be what it looks like to another. Can we all be right? Is there a definition?

Honestly, I don’t know if I ever sat down and defined what recovery meant for us, but I will say, I definitely knew what it didn’t look like: what we were living at the time. I think I initially thought of it in terms of what would be absent from our lives, not necessarily what would be present.

For example, not if, but when we recovered, I would think, I could finally clean off the biomed counter and clean out the biomed cabinet. The liquid supplements taking up a full lower cabinet and the solid supplements taking up a full upper one would be a thing of the past. I could open the door for a bandage perhaps, and not be overpowered by the smell of vitamins or get smacked in the head by a falling bottle of enzymes.

And the cooler we kept in the back of the van for those emergency food times, I would imagine…packed with gluten-casein-sugar-soy-dye-and-taste free foods…could go back on the garage shelf. (This was 2005, people. Dietary pickings were slim.)

Oh, and yes, I would gleefully think, I would no longer spend another weekend getting up every 3 to 4 hours around the clock. After about 100 of those, I was growing weary.

And there was more. The spreadsheet for morning, afternoon, and bedtime diet and supplements could be filed away forever. The prescription antibiotics for ear infection after ear infection would cease. The binder of medical EOBs and bills would get stashed away forever in the autism closet. In fact, there would be no more autism closet! (Do you have one of those?)

The patches of eczema in her elbow and knee creases would disappear. The intense examination of every bowel movement could end. Interviews for therapists and tutors would stop. Oh yes, I would imagine, it would be the absence of all of this!

But now that I think about it, I did also imagine what would be present in our life. Her voice. Her thoughts. Her personality. Her hopes. Her dreams. I remember sobbing one time when I realized I had no idea what she really liked. Someone asked me what she wanted for Christmas, and all I could honestly reply was, “I don’t know.”

I really didn’t know. What was her favorite toy? Did she like the clothes I picked out for her? How did she want her hair? What was her favorite song? I would know, I would think. When she recovered, I would finally know.

Most of all, I just knew how it would feel. Just like I instinctually knew when something was wrong, I would know when we were out of the woods. I would finally be able to breathe again.

Eventually, (as it became safer and safer to do so) however, in more clinical terms, I thought of recovery in the more measurable academic and medical realms.

Academically, for example, she would be mainstreamed without an aide, and preferably completely out of special education without any services of any kind.

Medically, I would think, she would lose the qualification for a diagnosis anywhere on the spectrum. And most important, there would be an end to the chronic illnesses and suffering that had gone on for so long.

Socially, there would be a recovery too. There would be friends and phone calls and sleepovers and birthday parties…and not the mercy invite kind. There would be backyard games of tag and neighborhood ball games and long bike rides around the block. She would fight with her sister and even smart off one day.  Gosh, she just may even tell a lie.

It was all of this: that which would be absent from our lives and that which would be present. That which could be measured and that which could not. And incredibly, almost all of it is now exactly as I imagined, with the exception of some social dreams still not yet fulfilled, and some academic ones too. But gosh darn it; we’re getting there. We’ll never give up trying.

So that’s how I define it. Moving forward as I write about recovery and all that it entails, this will be from the perspective I’m writing.

But what about you? How do you define recovery? And if we’re going to use that term, should we have a single definition? Is it simply the absence of meeting the diagnosis? Should this be something our doctors are looking at in medical terms, not just behavioral ones? Do you believe there are degrees of recovery? Is it all or nothing for you?

Please, chime in with your ideas. I’d love to know what you think. Recovery is a discussion well worth having.

Julie Obradovic is a Contributing Editor to Age of Autism.

Comments

Natasa

GREAT interview on BBC radio Scotland with Lorene Amet, Autism Treatment Trust, on recovery from autism.

Starts at 47 minutes in.

http://www.bbc.co.uk/programmes/b01pnctb

Natasa

Hey guys, guess what?

"Recovering From Autism Possible, Study Suggests"

http://www.webmd.com/brain/autism/news/20130115/autism-recovery-possible

There is also a FANTASTIC editorial piece accompanying this study in Journal of Child Pcych and Psychiatry. It sounds like professionals (at least some of them) are finally hearing what parents have been saying for years.

http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12045/pdf

Stagmom

Jackie, I'm sorry. Many of our kids are "non-responders" and/or "tough nuts." I know what you mean.

There are countless graves in America with people for whom everything failed in cancer treatment or other diseases. Only in autism do professionals tell us, "Do nothing but accept." As if our kids' quality of life does not matter. I'll never understand it.

As parents, we do all we can - that's what makes us parents, right? We don't all get the brass ring. Of my three 1 is doing well enough to have some self sufficiency. It hurts like heck.

KIM

jackie

I agree with the comment that we need a "sister" column for those of us who followed "protocols" did HBOT, Yasko,liver flushes, and finally homotoxicology with disastrous results, with little recognizable outcomes. We spent away most of our son's college savings, in pursuit of recovery, improvement, or "remission." No jackpot. My husband and I are now in the "Acceptance" stage. As we try to stage a decent future for our son's post-IEP life, our positive frame of reference is how happy we are for our son's ABILITIES.

elisa di bari

Dear Julie-when referring to my son who now a is a healthy young man of almost fifteen i do not see a diagnosis, a label or a category-i see him as he is -he's just justin-is he happy?
i think so -does he have a future-absolutely-is he miles away from where we started-definitely. Although we all hope for perfection and an absolute cure-at some point we have to stop and just allow our children to live their lives and also allow us to get back to a somewhat normal existence. I'm one of the lucky ones i suppose my son is in a private HS with anywhere from 12 to 22 kids in each class-he only has a 504 for extra test time-gone are the 1 to 1 aides -the
special ed classroom, the thousand therapists, the gazillion supplements, the biomedical/holistic protocols,the strict diets, the carrying special food with us everywhere and the
cooking of special meals. Also gone is about $2 million dollars- God only knows rescuing your child is not cheap. So now although we're still paying the bills, maintaining a modest diet, supplementation and treatment -he's the best he's ever been and living his life and so am I-I think this is the most we all have to hope for and expect-perfection is so over-rated.

Julie Obradovic

Thanks for all of the wonderful comments, everyone! I think a lot of really good points were made here. We will continue to discuss this moving forward.

@Thinkingmominthedesert, yes, I do have a Facebook page. You are welcome to find me there. Looking forward to hearing your idea!

Thinkingmominthedesert

This is def a discussion so worth having and actually long overdue! I have over 5 yrs experience working towards my son's recovery so I have a lot to add! I need to get the zillion thoughts floating in my head a little organized and then I will come back to write my comment. But I have to ask: Does anyone have Julie Obradovic's email address? Or know if she has a Facebook or twitter? I promise I'm not a psycho crazy lady!!! (well, only in the "u better not mess with this autism-warrior mom's kids or else" kinda way!) While reading one of her other posts recently, I had one of those "AH HA a la Oprah" types of moments! Haha I really want to share this idea I have with her! I would like to ask her some questions, get her opinion, find out whether or not she finds it as interesting as I do. Thx

Carolyn  kylesmom

@linda the way to recover from society denial of what has happened to us is to focus on the heros who take this on at great cost when they could have walked away such as Wakefield and dr geier and so many more. I compare it not to the holocaust but to slavery. The collateral damage of ruined lives and bodies is supposed to be acceptable for the greater good so even those who know better pretend it is okay. Your child who has a genetic difference porcessing toxinx gets autism so mine doesn't get the whooping cough. Oh well. Your child who has dark skin has to live a life suffering as a slave so mine can stay out of the hot southern sun. Our children are suffering so that others can profit. And they lie and lie and lie to make it okay. The fact that what happened to our children is wrong is hidden by blaming and attacking the victims for speaking out. Emancipators are excoriated. The recovery path is an Underground Railroad because it is somewhat hidden . When we expose it usually one of the railroad engineers gets his career destroyed . I realize it can look like I minimize the evil of slavery by comparing it to autism. But as society refuses to see autism breaks bodies minds and families. autism at its most devastating is childhood alzheimers leading to incontinence, loss of language gut issues memory loss and despair. For slavery and vaccine profits bodies and minds were lost due to coercion lies greed and ignorance. And an unwritten unadmitted value that the cost to innocents was worth the greater good to everyone else.

Teresa Conrick

Dear LB,

I would be in that group you describe with Meg. I love Julie's Recovery Room and read each comment with joy but also longing so I do understand what you are saying.

I don't know if I would say acceptance is what I would write about but maybe more in perseverence, survival, hope (a necessary, realistic kind), love -- and then -- medical issues unique to the group, persistent behaviors and medical symptoms, and a 'thinking outside the box' approach, the emotions involved- guardianship, the financial toll, the ugly side of pain-behaviors, etc,..

If at anytime you or any other reader wanted to write about your family's journey, the good and bad, please feel free to submit here on AoA. If you would like to discuss more about that, feel free to contact me - tconrick@gmail.com

LB

I'd like to see a sister column in conjunction with this one. One for those of us (whom I believe are most likely in the majority). A column for those of us whose children are 17, 18, heading towards their twenties. Children for whom we've done everything we could - tried everything. And our next phase is not recovery but some form of acceptance. Acceptance of what happened, what was lost and what will never be. Oh, we still have hope. We still try this and that. We still take any small improvement with relish and gratefulness but we know they will probably, very probably, never be significantly better. I'd like to see a column for us. We need each other too.

K

I think of full recovery as needing no special diet (except for non-processed/no GMO's, low gluten etc.), few supplements, no major allergic issues, no gut issues, and the ability to learn and have fulfilling relationships with others.
After a 13 year journey we have made great strides, but are not there yet. My daughter has made the most gains in areas of diet, allergies,and gut issues. These are finally not dominating our lives. I attribute this to oral chelation, of which we have done hundreds of rounds. Language has been more difficult, but is coming along well, also. Certain learning issues, and social/emotional issues have been the most difficult. Recently, we discovered that some stubborn symptoms were related to an under-functioning thyroid gland. Since we are correcting this, we're seeing progress in areas that have been stuck for years. Never give up.

Heidi N

Just want to say that my children are recovered in that they can do regular school, and they most definitely couldn't before. But, they still depend upon supplements and diet to keep symptoms away, even though they have been recovered for 5 years. So, just saying, reality is that most will still need helpers to stay in recovery. Ridding symptoms is not curing, it's just helping the body to get it to function well. I have seen many report relapses into full symptoms, weeks, months and even years after achieving recovery. So, the vulnerability is permanent. But, recovering from the relapse is done quickly since it has been learned what is needed to achieve that.

Natasa

A fellow warrior dad once used the word 'competitiveness' when talking about recovery and what it meant. Is a child well enough to be competitive with typical peers? (in more than one area of life/set of skills)

moosemom

Thank you for this post! I need to think in terms of "recovery" with the new year, as I am six years into the autism journey. I believe in full recovery for autism, but I also believe in "managed recovery" for some. My son has been regaining skills in all areas since his regression on a steady upward trend. But 18 months ago, PANDAS became a new co-factor to contend with and our first platueau at age 9. I believe all the things you wrote about can become reality, but I also know that I will have to take extra precautions throughout his life to keep normal exposures (like strep bacteria) away. He may have immune system and food issues his whole life.

HOWEVER, with people sharing their recovery stories--however they define it--I can learn and pursue options for my son that the mainstream will never provide. When has a "recovered child from autism" been interviewed on TV? Any significant gains should qualify as recovery, and be newsworthy. My son lost language and regained it on a functional level (not yet fully two-way conversational). I think parents would like to hear those reports on TV, as I would like to hear "recovery" reports in other areas like social interaction. Full recovery comes after smaller domain recoveries. Alas, every April, we never hear of a single report of "recovery" on any level. Maybe we need a documentary? And make copies for the Gov. Oversight and Reform Committee? People don't believe in recovery because they have likely never seen any form of it--thus keeping the genetic-autism myth alive.

And I agree with the previous comment about as a parent not ever being able to recover from a vaccine-injured child. Recovery from autism is possible. Full Recovery from government sanctioned mercury injections is NOT possible. But if there is a parent who paves the way in this area--please write about it and share. I cannot even see the food pyramid these days without loathing big government and industry influence on our health programs. Dairy is not a food group in other nations--just saying...

I don't want to get stuck on "full recovery." If a parent has recovery in any aspect of autism, I want to learn from it. I want parents to share their victories, even if full recovery has not yet been achieved. I especially love when non-responders and older children have breakthru's. It keeps me chugging along.

ebb

i will say that my son recovered in a way diagnosed with pdd-nos. after many dives in hbot, he was able to talk from 1-2 word sentence to a full sentence, can be able to express his emotions now, able to let me know how he feels and likes and the eczema is within control. i will not say 100% recovered because he sometimes he cannot understand some concepts in life. not losing hope. god is merciful. hope is the only thing that keeps us going. and god is hope or hope is god. god bless us all.

Linda

Physical and mental recovery may be possible, but how does one ever recover faith in mankind after vaccine poisoning? Can one ever learn to trust again after falling victim to a man-made, forced, for-profit machine that is based on an insane ideology, then being victimized a second time when cast aside as collateral damage while the crime is covered up not only by the perpetrators but by society at large? How do affected individuals and their families ever recover from that?

World War II holocaust survivors had to heal and learn to live in a world where they were once brutally victimized. But they also lived with the knowledge that their assailants earned worldwide condemnation for their acts.

How do vaccine poisoning victims live in a world where their assailants are still at large, committing the same and worse crimes, continually pushing to increase their reach while enjoying complete freedom from accountability and legal scrutiny, all the while profiting hand over fist, as their deeds are lauded by just about all major institutions of society? How does one ever cope with that?

First do no harm

I really like the concept behind this recovery column and there are some wonderful comments in response to it. But I have a small suggestion.

Perhaps a better way of starting the conversation would be to ask, "What aspects of recovery are most important to you?"
When using the term "recovered" clinically, it should mean fully and completely recovered in every way - physically, academically, socially, etc. If we redefine "recovered" to mean not fully recovered, we're in danger of helping to create a new normal, one in which a partially recovered child's remaining deficits will not be seen as impairments, but as "diversity" within the range of normal. Already, there are "experts" trying to redefine "normal" (ADHD is really just an "active child," a socially awkward child is "quirky," etc.)

Bill DeBurgh

Autism is a genetic untreatable lifelong disorder . learn to embrace it .
The national autism society of the UK tells us so . A government agency of perpetraitors to perpetuate the vaccine poisoners .

Good to hear parents all over the world are proving them wrong .
2013 will be our year . The governments will have to fund the recovery treatments , and we can look forward to the criminal trials of the guilty merchants of vaccine poison .
The reputation of both science and medicine will be left in tatters when this wall eventually comes down ....as it must ..... Poisoning our children and telling us we imagined it , however did u think u would get away with it ? No amount of fluoridated water or mercury amalgams or flu jabs could cover this one up .....you are scoundrels !

I hope the guilty parties are monitoring what we have to say .

Jenny

Then (at 2.5 yrs) - No eye contact, constant stimming, screeching, no words, only gibberish, darting around the room, temper tantrums that lasted five years, couldn't go out in public, old cell phone and a crayon were our "toys", Thomas, Thomas, Thomas, licking tennis balls, constant grey circles under the eyes, food had to be in threes on the plate, isolated and alone, no interest in other children, missed years of Halloween, couldn't sit still in a classroom, kicked out of kindergarten...You get the point.

Now (at 11 yrs) - No language issues whatsoever, healthy, happy, funny, outgoing, expressive, enjoys playing with friends, loves school and homework (!!), age appropriate interests (just started getting into watching and learning about pro sports, something I NEVER thought would happen), in chorus at school, loves Halloween, Christmas, birthdays, etc, and has typical behavior much of the time.

Yes, we still have an IEP and he is in a special day class. He is not always 100% socially appropriate for his age. But I consider my child recovered. He has not lost his diagnosis, but we have him back. The only thing I wanted was for him to be back in our world. And he has come back to us, better than I had ever imagined he would. I don't care if he is in special ed. I have my child back and to me, that is recovery.

Texas Mom

My son is medically recovered from his immune dysfunction which started in 2001 with MMR and Varicella live vaccines given in one day. It has taken 12 long years to get to this point. At his worst, he was nonverbal, tantrumming, banging his head on the floor, and a 'runner' who would bolt out of the house and in the middle of a busy street in the middle of the night. Angels guarded him and he was picked up by kind strangers all 5 times. He had severe sensory and visual disturbances, night waking and terrors, and could not be left alone for 1 minute. Once we began the 'biomed journey,' we discovered he had heavy metal toxicity for over 7 metals, over 150 food allergies, alternating diarrhea and constipation, yeast, PANDAS, low immunoglobulins, Low CD4 count (low T cells), elevated liver enzymes, not enough glutathione, folate deficiency, and viral load for 5 viruses (Parvo, HHV6, EBV, Varicella, Measles). His blood work looked like a severely immunocompromised patient. In 2008, we found a brilliant physician in Austin who healed his immune system over the course of the past 4 years. His heavy metals are gone, food allergies gone, immunoglobulins normal, T cell count normal and his lab work looks pretty spectacular. So, is he recovered?
He is verbal now. He moved from a letterboard to speaking about 3 years ago thanks to Soma. He is in 50% inclusion in middle school. He is learning to make friends and blushes around cute girls. He keeps amazing eye contact and talks to us, "Mommy is pretty today." He is making passing grades on standardized tests with the help of an aide. He is learning to play piano and guitar. He can shoot several hoops in basketball. He rides his scooter, bike and learned to ski and stand up paddleboard last year. His sensory, OT, PT systems are healed.
So is he recovered? Getting there...we still have a long road ahead. It's been slow and steady progress. I have learned over the years to not to trust any practitioner or company who has a 'quick fix' for autism, a miracle therapy, treatment, chelation, supplement, or other. It's a very complex road to healing multiple systems- immune, sensory, intellectual, emotional, verbal- and requires both a team and a quarterback to navigate the terrain. My son said "I love you Mom" as I left for work the other day. He hasn't said this first in his entire life. I cried the entire day- tears of joy. Recovery may take a lifetime, but we have weathered the storm and I now see the rainbow.

Kapoore

In our case the MMR probably triggered celiac disease that went undiagnosed for twenty years. There wasn't a vacation that was free of illness, so I always loaded up with plenty of homeopathics. My daughter had chronically inflamed tonsils so I would always be looking in her mouth with a flashlight. When she got sick she couldn't recover without antibiotics sometimes several rounds of them. She had moderate ataxia, dsylexia, was verbal although she had a hard time expressing herself. She was very tired. I thought she might have chronic fatique. In fact it was probably her severe anemia and viral overload that made her so tired. I knew she was capable of getting better when she brightened and recovered on anti-viral medication. But the medical community and everyone else was opposed to a biological solution with some rare and fabulous exceptions. She was not in special education but I spent huge sums on tutors and there was not a week-end, not a summer, not a night free of the constant and unrelenting catch-up because school required hundreds and hundreds of hours of help. And she had a very rocky emotional life with periodic meltdowns and few friends. My social life died and never recovered. Our family was dysfunctional but managed to survive.

That was illness. Recovery is a special diet that must be strictly obeyed, very high quality doctors that understand vaccine damage, some key supplements like cod liver oil liquid. No alcohol. Enormous emotional support which means several phone calls a day and occasional meltdowns.

DawnRinChicago

I wish I knew more about recovery. My daughter is "recovered" by many people's standards. She attends a private, gifted school without an aide . Her only diagnoses are anxiety and visual processing issues, but she functions normally, and is given social butterfly awards at camp, etc. She goes to a typical overnight camp for 24 days in the summer. But we still go through periods where her symptoms change and become unstable. She takes 43 pills and gets one shot a day and she is on a restricted diet. She is 9 and I am too familiar with her poops. I worry less about her going to college and smoking pot and more about her going to college and eating gluten or casein. I've heard that recovery is better called remission, especially as puberty reportedly shakes things up. In fact, I don't even know if recovery can get better than what we have. "Recovery" is a mystery even for me-- and I have a child who passes for neurotypical every minute of the day.

Perhaps recovery should mean no ASD diagnosis, including ADD, since it is recovery from ASD. I think we need a definiton that involves stages of recovery -- mainstreamed without an aide, no diagnoses at all, no more medical intervention needed. Maybe we should base it on % improvement in ATEC scores. Maybe recovery truly shouldn't be considered until the child appears to be everything he would have been "but for" the autism. Maybe recovery as a term is useless until the child is post-pubertal. I don't have the answers, but I really wish we had consensus on the term.

ANGUS FILES

Our latest comment from a doctor helping us was " he is the most healthy physical child we have met(after urine blood etc tests) but he is the most mentally destroyed".

So we know the diet,HBOT,Biomed have all helped but we still chase anything socially etc ..but we soldier on and are never ever giving up pursuing the vaccine damage he has incurred named Autism.

ASDFatherInPA

The sand bucket on an outside table would be gone. He would no longer need to repeatedly pour sand from a small sand shovel into the bucket as a sensory need.

Barry

For me, recovery from vaccine damage is like recovery from any form of physical assault. You fix what hasn't been permanently damaged, and then learn to live life to the fullest with everything you have left.

When my son can look me in the eye, and with a smile say " Thanks for your help Dad, but I think I can take it from here", then my role in his recovery will be finished.

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