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Autism recovery: A false hope?

This mother is saying what no one wants to hear: Stories of autism cures are fairy tales.

By Cammie McGovern

With the new estimates released by the Centers for Disease Control and Prevention that now put the incidence of autism diagnosis at one in 110 children (much higher for boys), I am thinking once again about the scores of parents out there who are facing not only a doctor’s dire prognosis but also an avalanche of confusing promises for recoveries and cures.

When my son, who is now 13, was first diagnosed just after his third birthday, we didn’t yet have bookshelves groaning with autism memoirs. Back then you read the early bibles of hope, Let Me Hear Your Voice and Son-Rise. Hope came from a variety of treatments, but the message was always the same: If you commit all of your time, your money, and your family's life, recovery is possible. And who wouldn't do almost anything — mortgage a home, abandon a career, or move to be closer to doctors or schools — to enable an autistic child to lead a normal life?

Here's the truth

Now, as the mother of a 13-year-old, I will say what no parents who have just discovered their child is autistic want to hear but should, at least from one person: I've never met a recovered child outside the pages of those old books. Not that it doesn't happen; I'm sure it does. But it's extraordinarily rare, and it doesn't happen the way we once were led to believe.

In saying this, I don’t mean to sabotage hope or the fiercesome faith one must keep, especially early on when a child’s progress can be so slow it sometimes feels nonexistent. It is essential for parents to maintain that faith because progress does happen. But after a decade of waging this war, I can also say this: Every parent of a child on the autism spectrum knows the feeling I've done everything possible — why isn't he better?

The answer is simple: Because this is the way autism works. There are roadblocks in the brain, mysterious and unmovable. In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half million autistic children feeling like failures.

They do get better

I don't mean to sound pessimistic about the prospects for autistic children. On the contrary, I see greater optimism in delivering a more realistic message: Children are not cured, but they do get better.

And better can be remarkable. At 13, my son is a far cry from the toddler who melted down when the sand was the wrong texture for drizzling. These days he embraces adventure, rides his bike, and repeats any story he tells five or six times. I remember thinking maybe we'd laugh someday at the lengths we went to when we were teaching him language — the flash cards, the drills, the repetitions. Now he's talking at last in his own quirky ways, and we don't laugh about the drills (though we laugh about plenty of other things). Language is a victory. So is connection and purposeful play. So are the simpler things: a full night's sleep, a tantrum-free day.

Reality check

Parents working toward these goals will one day be surprised and delighted by their children's funny new obsessions, odd fixations, and tentative but extraordinary connections with other children.

Being more realistic from the start might make it possible to enjoy the journey and see it for what it is: Helping a child who will always function differently to communicate better and feel less frustrated.

To aim for full recovery — for the person your child might have been without autism — is to enter a dangerous emotional landscape.

Cammie McGovern is the author of Eye Contact and The Art of Seeing. This essay is adapted from an essay that appeared in the New York Times.

Comments from GreatSchools.org readers

07/6/2012:
"My brother was diagnosed at age 3. He's eight now, and I'm fourteen, and life has just gotten more difficult. Sometimes I feel like I'm the only one who is thinking logically, as every one else, including my family, always asks "When is going to be normal?", "Isn't there a cure? I sure wish there was." No, there isn't. I know the only reason he ever gets angry or upset is because he feels he has no, or a limited, way of communicating his feelings to us, but sometimes it honestly feels like there's no significant help out there. And anything like a cure, is just a dream. "
04/9/2012:
"actually the latest studies show that children move off the spectrum and develop typical pathways when intervention is done early enough in a small minority of children. UC Mind, UCSD, PENN State and Yale have all published papers demonstrating that if intervention is begun as the brain is in it's early stages of connectivity, ABA and other therapies can correct the neurology. This was written in the NY Times in 2005... At this point in the autism research world it's ancient history. This is why there is such a great emphasis on diagnosis before 24 months. "
03/6/2012:
"Our son was diagnosed at the age of 4 with autism. I too was told that there was no cure, help of course, but nothing that would take it away. Over the years, I researched, read, and studied different interventions. Some I tried, but most didn't seem to fit our particular situation. Then I tried the gluten-free diet. One month in and I have a different boy. His emotions were much more stable, he could handle sarcasm and playing with his brothers- the family was amazed. Nine months in and the school could no longer classify him as autistic after doing his regularly scheduled testing. I'm not claiming it's totally gone, but most people don't believe me when I tell them he has autism. We've had some slight setbacks - hormones have come into play, and we are doing some more dietary testing. I am hopeful, and I consider my son to be a 'recovering autistic'. I believe that with the alarming rate of autism today we are looking at something environmental and or dietary. ! I believe that there is something to the dietary interventions that are out there - they may not work for all, but please, don't call it a fairy tale. What we have experienced is real, and I never would have kept at it if it weren't for the testimonies of people like Jenny McCarthy and others who kept saying "keep trying - keep looking". "
02/23/2012:
"I think the biggest fallacy in treating autism is that every treatment works for your child....at least to some degree. Much like other children every child with autism is unique and no one treatment works for everybody. You just have to be able to stick it out and keep trying things until you find what works and then build on it....if you can. That is the hardeset thing in my mind, knowing when to stop a treatment and start another. For my son, it was all about getting his body healthy. He still has a hard time picking up weight but it turned out his body was reacting to wheat, gluten, dairy, cassein, soy, rice, chicken and just about anything else that a normal kid could eat. It took almost three years to determine EVERYTHING that was wreaking havoc in his body. But once we did, he made amazing progress. He will always have autism....I am sure of that now. BUT I am confident he can conquer most of it, and lead a life that he can enjoy. Nobody understands what we as parents go through, and I just plead with you not to beat yourself up about it and not alienate yourself from your freinds and your friends who "don't get it". They can't possibly, and its unfair to expect them to. Harboring that anger and resentment towards others who don't deal with a child with autism....or just YOUR child with autism.....just means that Autism claims you as another victim. Celebrate your child and love them for who they ! are, that will do more for them than any therapy session ever could and it will help you to. "
07/5/2011:
"Everyone's experiences will be as individual as the children themselves. My son has gone through a program called Brain Highways, and it has changed our lives in ways unimaginable. Our home is peaceful and no one would know the challenges we had in the past with our son. Our friends can't believe the changes in his behavior. Then I ended up eliminating wheat/gluten and dairy as well as red dye from his diet and what changes came from that! There are ways to help our kids but we shouldn't feel the pressure to "cure" them. Just to clear the way so they can be who God created them to be. God made them wonderful! "
08/4/2010:
"Hi there, I am also a mother of a soon to be 13 years old autistic boy. He has improved so much, from a silent little boy, to a talking kid. But, yes,,,he doesn't talk like other kids his age. I used to be so obsess of making him to be just like other kid his age. Now, my goal, and I should also admit my fear is to help him to make the best out of what he has. He is very smart, but not his communication level is way below his age. I am not sure how I can help him to be self independent. I would love to connect with other parents facing the same situation. Thanks, Ida"
05/4/2010:
"Cammie's points are very true - progress will seem agonizingly slow at times, you won't have a miracle cure, but you will probably eventually be relieved and delighted to see that your child has a friend, or shows empathy or plays beautiful music. These children often have refreshing gifts, like stating simply and clearly something that everyone else thinks but doesn't dare say out loud, because they are not burdened by all the social constraints and rules that the rest of us are. You might mourn the lack of an 'easy' child, but you can joyfully celebrate the victories of a hard-fought battle."
04/19/2010:
"As a parent of a 7 year old with past diagnoses of PDD, ASD, ADHD, and apraxia I am living proof that 'recovery' (or whatever you choose to call it) is possible. Yes I agree it is not easy. We committed 3 solid years and hundreds of thousands of dollars (luckily the DOE paid for most of his intensive ABA program)to constant intervention, treatments, schooling, testing, etc, but we were one of the very few lucky families to have our child respond to most therapies we tried. Because I have a backgound in the medical field (Pediatric ICU nurse for 20+ years) I can even better understand that our kids with autism are not healthy and have a difficult time learning due to their health. Biomedical interventions (diet, antifungals/antivirals, supplements, chelation, HBOT) cleared my boys head and body so that he can now learn and I would do all again to see my son develop into an amazing, thoughtful, sweet, hard-working angel who is fully mainstreamed into a regular 1st grade clas! sroom who receives Fastforward, speech therapy and a reading program. He has lots of friends, plays baseball, basketball, football and soccer and is quite a good swimmer. My message to you is, every child with an ASD diagnosis has the potential to improve...and who does not want that for their child. Please don't lose hope for your your child."
04/12/2010:
"As a person who lives in a house where 3 out of 4 people are Autistic.Call my twife The Odd 1 in. I just want to say I personally dont wont to be 'cured', I just want understanding. "
04/6/2010:
" This is an interesting story. Unfortunately, the problem is, since we have no idea why 1:110 kids now are being diagnosed with ASD, we clearly CANNOT state with ANY certainty that it is incurable. One person's experience is just that...one person's experience. In addition, all autism is, is a set of symptoms. It is well known that these symptoms change over time for some individuals. "
03/17/2010:
"I have to wonder if some of the posts are biased here. I have seen my ASD girl, who is 8, improve with time. I read from an autistic adult, which was enlightening, that also autistic people develop! I have two friends with severely autistic children who did not vaccinate! So, what can they blame for their child's condition! I am sometimes tired of hearing from well-meaning friends who know bout my daughter's condition to check out Jenny McCarthy. Well, I noticed that Jenny never shows her son's progress. Says he totally cured. Where's the proof? Where there's an incurable disease, out come the opportunists. Sure, some therapies are helpful, and children do thrive with attention and good diet, exercise, etc., but the pressure for curing your child is too much. The autistic adult said that it's just as helpful to actually spend time with your child as sending them to countless therapies. The same is proven for neurotypical children. Go figure. I have had acquaintances and friends get mad at me for not going for various 'cures,'like expensive vitamin drinks, homeopathy,etc. Unbelievable."
02/24/2010:
"Well of course there's no cure. BUT... while my son still has a diagnosis of Asperger's with sensory disorders AND AD/HD, we just had his 7th birthday party where he invited every last child from his entirely mainstream first grade class and not ONE child there and not ONE parent would even guess there's a thing different about my wonder boy, never mind that he's a child with autism who receives special education and additional support services. In our case my son went from a non-verbal 18 month old child, tip-toe walking, hand-flapping, tantrum-throwing, furniture climbing, eye-contact avoider to a nearly 100% mainstream, very typical child. Still quirky. The autism is there- always will be, but it's happy to stay under a few layers of otherwise highly regular kid. No flapping and so much talking sometimes I think 'oh boy, did I wish too much?'. He finds his sisters annoying, homework a pain, and likes to play dinosaurs and commandos on the playground with his peers. Most g! irls but one he likes are gross. In other words, normal. Fine. Typical. I agree, after the work I've put in to my child and the work he continues to do for himself, we're not cured but it's hard to not think of it that way when I go back 5 years to who he was then, and who he is now. "
02/8/2010:
"As the mother of a 9 year old who was diagnosed with ASD at 2, I can assure you that although 'cure' may be a strong word, a sense of normalcy can be attained. Through years of hard work and sacrifice on many fronts, my son is thriving in a Spanish immersion school. He is fluent in Spanish and English and is learning Mandarin as well. He has friends, was identified for the Gifted and Talented Education program, and participates in chorus, science club, and the school news station. I still notice his quirks, but many other teachers on campus are shocked when they learn he is on the spectrum. No child is perfect, but I am a mother who finds it hard to say my son is not 'cured.'"
02/5/2010:
"Thank you!! I knew it already. My son is 12 yrs old and I still waiting..."
02/1/2010:
"thank you...believe me the countless exhausting hours spent with my child pay off everyday and sometimes it seems never ending. It is nice to hear that though it may be rough there is some hope of although maybe not a cure but some possiblity of getting better. Its amazing how hard you can see your child work only to fail and it not be his or her fault. One can only pray that somehow their life will eventually be easier someday and that they will be able to function on a higher level."
01/26/2010:
"Just wanted to say THANKS for telling it like it is! At least, as parents of a special needs children, we can all relate."
01/25/2010:
"amen sister!"
01/25/2010:
"I guess it all depends on what is understood as 'recovery.' Having a warm, parental relationship with an ASD child who was otherwise unreachable as a toddler should be considered 'recovery.' Being able to converse with a child who was nonverbal should be considered 'recovery.' My dear friend believes his ASD daughter is fully recovered from her diagnosis because he enjoys both of these things. Is she 'perfect?' No -- but no kid is perfect, neurotypical or otherwise. I agree that being realistic is key. If you're up to it, please read this book: 'Send in the Idiots,' by Kamran Nazeer. It's a book written by a man diagnosed with autism as a child, who sets out to visit his former special ed classmates. The stories are sometimes heartwarming, and sometimes heartbreaking. Nazeer is an excellent writer, but still has difficulty in some social situations. Is that 'recovery?' I'd say so."
01/15/2010:
"Before you buy into ANY learning disorder and treat them with drugs, are you feeding your child whole, organic food and a well rounded diet? Learning and behavior disorders are quick and easy to throw medicines at that have both KNOWN & UNKNOWN LONG TERM effects. Are you doing the most you can to avoid chemicals, excitotoxins and other nervous system taxing food (neurosurgeon and researcher Dr. Blaylockf's research and talks can be found on utube for free), allergens? There are no 'miracle cures' but a lot of research and exhausting hours of dedication and hard work have paid off for me and others I know. There is an amazing physician who has had amazing results with autistic children and others with 'behavioral' disorders that are controlled with avoiding foods, supplementing with whole food vitamin nutrition based on the needs of each individual, deactivating the continuously damaging immunizations. He uses nutrition, allergies and state of the art medicine. He is a gift. www.drkaslow.com. Also a homeopath that has had amazing results in our family and others with Nutrition Response Testing and whole food supplements: newlifeholistic.com Dr. Jason Coping. Both are priceless. There are no 'miracle cures' but with a lot of research and dedication you can help you child have a functional and more rewarding life. They deserve your help. I have been there and it is exhausting, but these resources have all played a huge role in not only my son's recovery, but many others I know personally. Most doctors are taught to treat symptoms. You go to them to stop a symptom or an outcome of a problem. But they are not taught to get to the cause. The doctors above are some of the very rare few that look beyond the symptom and start treating the causes and building the systems that were damaged by the cause(s). Your children are worth your dedication and work. Once you are on the right path, it gets easier. I noticed a difference in 4 hours after Dr. Coping put my son on some simple supplements. Then Dr. Kaslow is now taking that to the next level, deactivating the damaging immunizations, doing additional research, etc. You need to be knowladgeable about how every thing that your child eats and comes into contact with effects their body (and yours). Dr. Blaylock has some amazing informaiton on how food reacts in your brain and what it does to the nervous system. F"
01/15/2010:
"As the mother of a 13yr old son I found this article very insightfuland true. It is good advice for parents just beginning the journey."
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