Arbitrary Normality

I\’ve been practicing for sixteen years now, doing both internal medicine and pediatrics.  One of the joys of that is watching kids under my care grow up and not having to give up their care just because they get older.  The spectrum is wide, with some kids growing up in \”normal\” families with \”normal lives,\” others in \”abnormal\” families, and yet others with inherently \”abnormal\” lives due to illness or disability.
But the kids aren\’t the only thing that has changed over the past sixteen years, their doctor has changed as well.  My comfort zones have widened, not getting rattled by \”abnormal\” as I once did.  I used to feel uncomfortable with the mentally and emotionally disabled, now I am not.  I used to feel sorry for parents with \”abnormal\” children.  I used to feel bad for kids who were \”abnormal;\” I still do now, but not nearly as much.

Of course, they all are well-aware that they have an \”abnormal\” doctor.  OK, you can lose the quotes on that one.

These emotions have been most transformed in my attitude toward autistic children.  Autism used to make me very uncomfortable.  I felt awkward talking to their parents.  I tried to avoid the topic.  How the parents must wish their kids were \”normal,\” and how the kids would wish they were \”normal\” (if they could).  I felt pity.

But as the years have gone by, I\’ve discovered an amazing transformation: I now really like my autistic patients.  These are often some of the more enjoyable visits.  I\’ve also noticed that, contrary to society\’s perception, the parents of autistic kids are not in mourning.  They are not living in a constant state of \”what could have been.\”  They are often smiling.

Society likes to take a group of people, call them \”abnormal\” and feel sorry for them.  Disabled children are the center of our societal pity, with the torch-bearers for this being Jenny McCarthy and the other avid anti-vaccine folks.  Unlike the lepers of biblical times, these kids and their parents don\’t have to cry out \”leper, leper!\” to be avoided by others; they are avoided by default, pitied for what others don\’t understand.

But as I have gotten to watch these kids grow up and have become closer to their parents, I\’ve noticed the following:

  • They get better over time.  Children I once felt sorry for I am having conversations with.  They are not \”normal\” – they are unique.  Autistic kids mature over time, just like \”normal\” kids.  Autistic kids become more aware over time, just like \”normal\” kids.
  • There is an innocence and a lack of guile that is endearing.  They don\’t lie to me, they don\’t beat around the bush on issues.  Sometimes I get surprised by what they say, with it\’s bluntness, but I don\’t mind that anymore.
  • They are generally happy.  They don\’t seem to carry the anxiety that has become rampant in our society.  They do get angry and obstinate – sometimes at a very high volume – but once that dies down, they become content once more.
  • As they gain function, they also gain a unique sense of humor. I don\’t think I can explain it better than this, but I often find myself laughing when I\’m seeing them.
  • The parents are proud of them.  Once they can drop their societal defensiveness from universal pity, they delight in the accomplishments of their children.  Perhaps this is because they don\’t  take things for granted; perhaps they don\’t feel entitled to \”normal.\”

I\’m not saying that there isn\’t hard stuff that\’s unique to raising autistic kids.  I am not saying that we shouldn\’t be devoting resources to helping these kids and figuring out the cause of autism.  What I am saying is that we need to get beyond the pity.  These kids are not lepers.  They are unique people with their own strengths and weaknesses.  They bring me joy when I see them – more joy than many \”normal\” kids bring.

Normal is overrated.  Normal is arbitrary and evasive.  Nobody is normal; we all bring our own uniqueness to this world that should be appreciated for what it is.  A very large portion of the \”normal\” people I see are anxious and unhappy.  I doubt the suicide rate among autistic teens is anywhere near that of \”normal\” teens.

So, to all of you \”normal\” people out there I say: get over it.  Don\’t be afraid, and please lose the pity.  After you involve yourself with these and other kids with disabilities your life won\’t be \”normal,\” but who needs \”normal\” anyway?  We all need to lose a little \”normal.\”

To all of those autistic kids I\’ve seen I say: thanks for teaching me the arbitrary nature of \”normal.\”

69 thoughts on “Arbitrary Normality”

  1. My oldest, when learning about his diagnosis of OCD/TS was reading some stories of children facing these issues. In the middle of the stack of stories he looked up and exclaimed “I'm normal in my abnormalities”
    It's been his life motto (and adopted by his younger brother) as he realized that for a child with tourette's and ocd he Is normal .. he is what God created him to be and he'd be the best him he could be.
    I've learned a lot from my kids and how they deal with their issues … they're great teachers.

  2. What a great post!! I work in pediatrics as well, so we too understand the hesitance there can be with dealing with parents of children. And don't worry, you're not the only one abnormal. I was called that all my years growing up… my name is Abigail, “Abbi.” Nickname was always “Ab-normal.”

    Still am today. :o)

  3. Michelle Kaminski

    Dr. Rob, I love your article. We have two young boys, both on the spectrum, and all you wrote is true! What fantastic, interesting, unique little people. And the accomplishments of my older boy, which would seem small to other parents, make me proud to the point of tears. There are struggles, but after both boys are in bed, but my husband and I find ourselves laughing at the events of the day. I have come to realize how much I cherish “abnormal” – it's just so special and unique.

    Thank you for your post. We need more people and doctors like you to realize how special every child is.

  4. Michelle Kaminski

    I love your son's motto! We're not quite to that point yet, but my younger boy and I talk all the time about how God made each person unique and special. We should celebrate our diversity.

  5. What a great post, Dr. Rob. I have an adult autistic sister, and doctors are often intimidated by her because of her special needs. They sometimes don't address her, look at her, or talk to her at all when we accompany her to the visits. She doesn't always get the proper standard of care, and i often have to step in and fight for her. Unfortunately, not all doctors think like you, but i really wish they did. Any chance you'd be willing to relocate your clinic to California? 🙂 Thanks for posting this.

  6. Dr. Rob:

    There is a comment listed with my name on it that I did not make. What I said about this article is that I thought it was an excellent article. Someone has unfortunately hacked into my twiter account and is putting my name on things that are not a reflection of my thoughts. Just wanted you to know I think your work and your writing is amazing as well. I am sorry that this comment happened and I hope you see this.

  7. Got it. The comment below is from your tweet of this post. I does look like you say I am overrated, but you really said that Normal is overrated. I certainly am overrated in my hang-gliding ability. I can't do it worth anything and folks think I am great at it.

    Heh.

  8. Thanks, Dr. Rob, from a gal who's been “on the spectrum” all my life (though it was not recognized until I just about fell apart trying to go to college)…I have learned that despite what society tells us, all people have intrinsic value just because they ARE, labels, diagnoses, and other social conventions notwithstanding. I've had several labels over the years (as I've said in previous comments), but I've always had two standard theories about “normal”: (1) “Normal” depends on who's looking, and (2) “Normal” is just a setting on your dryer. (I think the latter was a title of a book some time ago, but I didn't know that when I first used it.)

    As for pity, I personally have no use for it. The only things that have allowed me to be what society might consider “successful” are hard work, stubborn persistence, and a few people in the right places to help me accommodate the issues that come from my particular neurology. After years of being impossibly hard on myself for not meeting personally high standards (that I later discovered were a bit too lofty), I've finally come to a place where I say, “Considering that I'm supposed to be either dead or a 'vegetable' (someone else's term, not mine), I'd say I've done pretty well for myself!” Kudos to you for changing your perspective on a very diverse group of people…and don't even get me started on the likes of Jenny McCarthy! (Perhaps fodder for a post of my own someday!)

  9. Great post. The only term that is as offensive to me as “abnormal” is the term ” (blank)challenged.” For me, to be normal is to be doomed to mediocrity. The day I stop being challenged is the day I might as well just fold up and die. What would be left?

  10. Isn't it interesting how our patients teach us more than any textbooks ever did? I love that
    part of practice.

  11. Wow, are you on a roll or what with these posts lately! I've never worked with autistic kids but I can believe how authentic they are and how much you enjoy them. I was a mental health worker in a former life and most of the folks I worked with were schizophrenic–some more intelligent than you and me put together, some lower functioning. All as unique as snowflakes and refreshingly low on the b.s. scale. I used to supervise a janitorial work training crew and one of our guys, Milo, was singing at the top of his lungs while he was mopping near the neighboring health department. (Oddly enough, most of their staff were not enamored of our mental health clients). As soon as he saw me coming he said, “I'm harmless!” I said, “You know that and I know that, but they don't, so knock it off.”

    A lot of people don't get why I have such fond memories of those days. I can see why you enjoy your kids so much. And I think Lily Tomlin said it best—“Reality is nothing but a collective hunch.”

    Thanks for yet another great post and for bringing back some good memories.

  12. Monsieur le Docteur:

    Thank you for sharing the joy and what you found.

    You've made some wonderful changes and have opened up.

    There have been two statistics which have been exaggerated: the divorce rate and the suicide rate.

    And there's one which has been under-rated. As you say, it's not only in the functioning; it's in the being!

    What do you think this says?

  13. TannersDad Tim Welsh

    This is a confusing post from a Doctor that has been in practice for a while. Are you asking us just to adjust our attitudes towards autism? Some of your statements are blatantly false, misleading, and on the verge of malpractice. The majority do not “get better over time”. The impression from this post as well as the popular mainstream movement is to market Autism as a difference. Hence President Obama's Appointment to the Disability council of Ari Neeman who believes in this Happy Happy philosophy. As for Jenny McCarthy she has led a revolution of treatment & Service for those on the spectrum that should be applauded. It is easy as a mainstream doctor to blow off concerns of over half the U.S. Population with the ever increasing vaccine schedule. Finally the lack of preparedness to face the impending tidal wave of those with Autism is also a crime. TannersDad Tim

  14. Dr. Rob–great advice! As a psychiatrist I've worked with many autistic kids and adults as well as with their families. What I especially like is that you emphasize how important it is not to pity people with disabilities. In fact, I didn't realize until recently how a person saying that they are “inspired” by someone succeeding despite their disability may even be offensive to them. I wrote a post about it here: http://www.positivemedicalblog.com/2010/06/doub

  15. I am a haircutter, and since I only work on kids, I tend to see alot of autistic children, and while I can agree with you that the parents love their kids and get much joy from most of them, I can also tell you that there is not one that I have met that considers their kid the “new normal” and who if given the chance wouldn't have liked their kid not to be going through all of this…I am not saying that many of them would exchange their kid for another, I am saying that it is a hard road, and living with some of the autistic children I have seen would make any parent pray for the “old normal” as much as I hate to use the term normal.

    What goes on in peoples houses is not what you see in the office, and many parents do mourn. That is normal! I appreciate the fact that everyone sees joy in their kids. What I do know is that alot of people cry to me, and would love the life of their child to take a different road.

    Please don't get mad at me for saying what I see…alot of heartache.

  16. What if Jenny McCartney is right? What if children with autism are really sick because of undiagnosed celiac/food allergies/reaction to vaccinations? Our society is so convinced that we eat well because we're fat, and we're healthy because we don't catch measles. We've traded slow-cooked meals without preservatives for chemical-filled Happy Meals; traded mumps for diabetes and autism.
    My son is on an organic, gluten-free, milk-free diet and he's thriving. He's the healthiest kid in his class. He had one sick day in the past year, and that was for pink-eye.
    He was on the road to autism. Because he eats healthy, he no longer is. He isn't “growing out of it”, because he regresses every time he eats something he shouldn't. It leaves his system, and he returns to the happy, social, smart, funny 5 year old that I have wished him to be.

    Why is this being demonized? Why is eating really healthy (organic fruits, organic vegetables, whole grass-fed meat, approved grains and starches) being looked at like we don't love our children? I'd say look again at the mother of a diabetic who allows cookies and cake and then just gives more insulin.

    Rethink health. It starts with how we build our bodies, and we build them with what we put into them. Eat healthy. Drink clean water. Stop injecting heavy metals into our kids – their overburdened immune system can't handle it.

  17. I don't disagree, but my sister has a son with SMA, a condition that makes all of his muscles non-functional. She also had a son die of this condition. She certainly did mourn, and does pine for a different life for her sons, but that does not dominate her life. What she has is what she has. Most people would trade away their problems, not just ones facing disability. The question is not whether this hardship is hard, but whether they deserve our pity. Pity is a very condescending position – looking from a powerful position at a powerless person. Having been around folks with disabilities (see my post about a disabled kid who works for us: http://distractible.org/2007/07/12/joi-de-vivre/ as to more thoughts on this).

  18. Blackbilledmagpie

    My Asperger's dd was always charming and cute to me, yes-she always told the truth–to a fault–couldn't play pretend games because of that, but she was ostracized and sometimes bullied at school, had anxiety through the roof (couldn't ever sleep through the night due to fears, worries, and sinus problems), had OCD hand-washing, nose-picking and throat clearing behaviors which were hard to live with, was so shy and fearful she could hardly speak in school or anywhere except with close family members, had constant eczema, nonstop sinus infections, encoprenesis (severe constipation), was often sick with colds and fevers, and was in many ways unaware of, and unable to interact with the world around her.

    She was always beautiful, charming, funny and exceptionally intelligent in certain ways, but she struggled to learn some things–she knew multiplication facts before she was 6, but she couldn't solve even a simple word problem without a lot of help. She could read books and spell words at 6th grade level in kindergarten, but she couldn't follow multistep directions, got lost easily, and was always left alone on the playground.

    She was unable to concentrate on much of anything (other than computer games), she was easily distracted by anything going on in the room, or outside, a speck of dust, another child shuffling her feet, the teacher's perfume. She sometimes spent hours staring at her hands. She behaved oddly and there was a sparkle missing from her eyes that had been there when she was very young.

    Today, she is much better, thanks to help that DID NOT come from our nice, accepting pediatrician who continually told me I was worrying too much and should just accept her. Who told me her encoprenesis was mostly a behavioral problem (NOT). And NO, she did not just grow out of it all.

    Today, she no longer suffers from asthma, eczema, sleepless nights, constipation, OCD behaviors, or crippling anxieties. She has learned to lie (which may not seem a good thing, but trust me, it is), is now very aware of the world around her, can ask the librarian for help or order food at a restaurant, is making friends, can solve complex word problems though math is NOT her forte, can follow multistep directions, find her way around a large highschool, AND she thanks me for finding things that have helped her feel and function so much better.

    I used to worry that she would never be able to make it in the world on her own. No longer. She is still her wonderful, smart, funny, loving self–just much healthier, happier, and at last really able to function in the world. The sparkle in her eyes is back.

    And all these improvements are THANKS to a naturopath and a DAN! doctor and Andy Cutler and vision therapy and brain integration acupressure and my thousands of hours on the internet to find these kinds of help and convince myself that they were safe enough to try and worth the money — (Note that most of this happened long before Jenny McCarthy entered the scene to become the figurehead for “kind” pediatricians to bash).

    Thanks to diet changes, digestive enzymes, vitamin and mineral supplements, AND GETTING THE TOXIC MERCURY that she had in her system OUT through low and slow DMSA/ALA chelation. Thanks to all that, my daughter is now healthy, happy, and aware and outgoing enough to be able to find her OWN way in the world.

    You sir may think you are being a better doctor by being more “accepting” of kids with autism, but you would BE a better doctor if you spent a few thousand hours learning how to actually HELP them!

  19. JM has no credibility to medical folks and, in many of our eyes, spread harmful information. We don't demonize eating well. I am happy your son is healthy.

    I don't want this blog to turn into a venue for arguments about this kind of stuff. I am a pediatrician, so obviously I believe in helping children. I have devoted the last 20 years to that. If you want to trust Jenny, that's your choice.

  20. It sounds like you are talking about high-functioning kids on the spectrum. Why don't you go to the DAN! conferences and become educated about how to treat these kids since you are a doctor. They have medical problems that lead to the behavioral symptoms you see. They are absolutely normal kids but they have medical problems that get in the way or functioning “normally.”
    You say they are “generally happy.” I know this doesn't include the ones who are having diarrhea 10 x or more a day and who bang their heads and bite themselves because of their pain.

    I am a pharmacist. One of our “fast-movers” is the drug Aricept, used for Alzheimers Disease. Would you call Alzheimer's Disease the “new normal” in the aging population?

  21. “JM has no credibility to medical folks and, in many of our eyes, spread harmful information.”

    Why I wonder?? If my child were diagnosed as autistic and then I found a way to help him, why wouldn't I want to share that, and why wouldn't you medical folks give me some credibility? What are you afraid of, exactly?? You are wanting us to accept vaccine injury as normal? What kind of person does that? You are telling parents that if their child is 5, 10, 18(?) that it is normal to still be wearing a diaper? That it is normal for a child to flap their hands, walk on their toes, to wear diapers, to scream all night long??? It is NOT normal to be sick and that is what a lot of these autistic kids are, Dr. Rob, sick and as a ped, I would think you would be one of the first to give Jenny a ring and find out just what she did to help her son get well again.

  22. I'm not talking about pity. I get on the floor and cut these kids hair and treat them the way they deserve to be treated. i shut out lights if it helps, I turn off noise…total respect for the kids and parents…I'm just saying that it is a very hard road for the parents and for the kids, and there wouldn't be so much running around looking for cures if people were ready to accept this “new normal” to accept their kids for who they are.

    I know we all have something we mourn about, but what most of us want is children who can function in a comfortable way in this world. Not children who bang their heads and bite themselves because they cannot communicate.

    I spend all of my time trying to make them not scared. Sometimes it works, sometimes it doesn't, but pity? that doesn't get anyone anywhere.

  23. The purpose of the post was not to redefine normal, it was to point out that autistic children are a delight in many ways, and that we should not avoid them or their families. My main problem with the fear-mongers is that they make autism out to be a sentence to a life of misery. It is not. Is it hard? How could I as a pediatrician say it isn't? I see the pain, the struggles, the “what if” questions. I am not saying we should accept it and move on, I am saying we should stop treating it like leprosy, stop avoiding them, and understand that all people are precious in their own way.

  24. I enjoyed this point, but it's really about acceptance……only a portion of the scenario……. because there is regret from the parents of children with autism……..and many of them blame the shots (I know all about the research v first-hand experiences and that's not my point here). My child was just operated on for cancer that spread (I just came home from Cleveland Clinic and my daughter has a drain in her chest and a five inch scar running across her neck) and as much as I long (and long deeply) to grow from this experience, and quite possibly love her more at this moment than I do my other five children…….in truth, what I long for is the days before this black cloud entered our lives. She is my second child with cancer (our first child was sent home to die. There is an old video on youtube.com and it can be found under something like, “Alex Robertson healing” but, in truth, even with the most spectacular of endings there are always repercussions. Have you read Chuck Colson's writings on his great love for his grandson Max (he is autistic)? We learn so much from the imperfect in our society, so your post about acceptance, and loving beyond measure what society feels is imperfect is appreciated……yet, if a shot is causing this surely the part about the “avid” anti-immunizers is unnecessary? We can learn from them to (I think some of their advice on chemicals and diet is very important. Let's face it these people are the reason the thimerosal was mostly removed, and the shots are safer now because of the very people who try to dimish in credibility. We, actually, owe them gratitude). I wonder if you would feel this way if in your heart-of-hearts you knew your child changed (i.e. was damaged) after a measles shot (appreciation and acceptance are one thing, damage is another. Both completely different levels)? Sometimes it just has to hit home before our hearts truly metamorphosis, because at this rate it's just enlargened…..not a complete change.

    Chuck Colson had a very nice article about recent research into autism for those who enjoy Breakpoint (it's a Christian worldview newsletter from a deeply insightful, possibly brilliant man whose heart grows as he ages). There are 12 markers they can identify that are associated with autism, and I know you weren't saying this……..but think about this……if they can identify who the shot will hurt (and that day is coming. Read some of Dr. Bernadine Healy's writings and quotes about what medical science is ignoring. She was the head of the NIH and the Red Cross and is married to a top doctor at Cleveland Clinic, so she is informed….unlike the meer ignoramus many doctors try to make someone like me out to me [there are threads online with such ignorance from doctors my own doctors felt they were being ignorant to the facts). Ultimately, she has her finger on the autism problem and is probably one of the most honest doctors out there.

    I guess what I am trying to say is it's wonderful to wax eloquently about being taught a more perfect way to love through autism and even Downs. What a shame that Down's babies are going to be extinct. What a world our children will live in when a Down's child has no one to play with (90% of them are aborted because of pre-natal testing). How we would have loved a Downie! In our world they are truly closer to perfection when it comes to love, than I will ever be. Intelligence is a gift…….but how I wish our society knew that a true education is surely of the mind and the heart……with the emphasis on the heart.

  25. Oh, how nice that you enjoy our children, that YOU don't mind their bluntness, that they bring YOU joy. I'm glad our children serve a purpose to you. Now, why don't you actually do something to help them. Contrary to popular belief, they don't just get better with time. My daughter made early progress, then went downhill to the point where NONE of her doctors could do anything for her. When she was seven years old hospitalization was suggested, and that's when we took matters into our hands, starting traveling the country to see doctors who thought outside the box, found a DAN doctor, and got her on the road to recovery. Biomedical treatment has been successful, where traditional medicine and therapies failed. On the rare occasion when I have to take her back to any of her old doctors, they notice the incredible progress yet make disparaging remarks about her current treatment. How do they think she got where she is now? You have NO answers, yet you trash people like Jenny. No worries here. Word is getting out. RECOVERY is going to be the new normal, while doctors like you, who offer no solutions, will lose credibility.

  26. It's so disheartening to me to see the anger in some parents – the “I've been dealt a bad hand” attitude takes the focus off their kids and onto the parents. Our kids DO get better. I see it ALL the time. My own son started getting better when I got over my own pitiful self and started to see the positive in my son and what joys his autism has brought to our lives. Yes, I said JOYS that autism has brought us. Before you start with the “well, YOUR son must be high-functioning,” let me tell you he most definitely is not. He's going to always need some level of care. His behavior was so out-of-control we hospitalized him at one point. That was the catalyst for me. I decided to look for the positive, and I found it. Your child senses your anger very acutely and he internalizes it and projects it. I wholeheartedly agree with Dr. Rob. Calling it “malpractice” to note that kids with autism improve over time is just inflammatory and self-serving. Our kids get better when the parents get a handle on their own “woe is me, I didn't get a normal kid” hang-up.

  27. I certainly think you wax eloquently here, and agree with much of what you have said. Yes, I should have left the bit about JM out of the post, as it has drawn the attention off of the main point of the post and onto something I'd rather avoid.

    Here's the rub with many of these folks commenting: I am a pediatrician. I studied disease in children and have cared for them for 16 years (plus time in training). I have taken care of thousands of children and have spent my life trying to keep them well, make them well, and relieve their suffering. I also believe in immunizations and find it a travesty when I hear of children dying from pertussis or h. influenza. These children didn't need to die, but their lack of immunizations caused it to happen. This makes me very angry at those who have convinced the parents they were helping their kids when they didn't immunize. I also get frustrated when someone thinks they can learn my specialty over the Internet.

    I know that there are always things we believe to be right that are proven to be wrong, but that cuts both ways (thimerosal is a good example, as the removal of it from vaccines did nothing to reduce the rate of autism). I am always aware that I may be wrong. But it is quite presumptuous for folks to think that I am either part of a conspiracy or blinded to facts that a non-physician playboy bunny can see. That's why the reaction against JM is so passionate.

  28. What I have seen, up close and personal in the 10 years I spent in the 'autism world' with my son (mis diagnosed when he really had severe sensory integration dysfunction and a few other dx) was that the parents who listened to the fear mongering were always looking for the cure and never getting appropriate treatment for their child. They were willing to put their child through unproven and expensive IV treatments, chelation therapy, expensive diets, and not going the route of occupational therapy/physical therapy/speech therapy/ABA etc …things that have proven to benifit Autism and Autistic like disorders (of which sensory integration can be)

    Had it not been for following 'standard' care in OT/PT/Speech and ABA, I have no doubt that my 18 year old would still carry the diagnosis of autistic. Instead, he still has some sensory issues that can be quite serious, but they can be dealt with … but his social skills are normal ..even above normal.
    His self stimulating (hand flapping, spinning etc) has gone away, though his OCD has not.
    He is a popular child (particularly with the girls *rolls eyes*) and participates in the leadership program at the school. He has even served on the student council and done quite well.

    When he was first diagnosed as autistic, I was warned a bout 'chasing rainbows' I paid attention and I watched so many parents so determined to CHANGE their child that they miss what the child is ..they are so determined to make their child normal that they miss out on WHO the child is. They have a rough row to hoe when they are not willing to accept what is and go from there.

  29. I”m glad your heart is open to our Autistic children. You sound like exactly the sort of ped I'd recommend to parents of autistic children.

    I wonder if you have seen in your practice that a good chunk of autistic children who have excruciatingly painful inflammatory conditions, usually among the (regressive rather than infantile cohort). It is very hard to get these children's medical issues treated because they get dismissed as “just the autism”. This happened to my son. “That's just the autism” , a phrase I wish I could ban, led the GI doc to refuse to examine him. After three years of stalled growth, poor weight gain, and writhing on the floor while yelling “it burns, it burns” it was learned that he has inflammatory bowel disease. “That's just the autism” also led to his multi focal petite mal seizures to go undiagnosed for 5 years (during which he went from aspergers to severely autistic because of this).

    None of this is your fault, of course. But since you are a pediatrician with such an open heart I wanted to share this all too common experience of children with regressive autism. If feel if we talk heart to heart with pediatricians at the grass roots level it could lead to finding answers to the comorbids of Regressive Autism.

    Many thanks.

    autismmomrising.blogspot.com

  30. How about we trust Dr. Jerry Kartzinel and all the other DAN doctors instead??

    Jenny had to go through what a lot of parents are now going through. She had to watch her child go through things we (as parents) never even knew could exist for our kids. She had enough courage to speak up, to speak out, and help the rest of us find our voice and not stay hidden any more.

    Jenny is speaking from experience. Most doctors are speaking from what they have been taught, not from what they lived through… it makes all the difference.

  31. Let me ask you Yellowbike – What do you suggest we do, when our children are crippled over in pain because their stomach hurts so badly? should we just accept that and ignore the pain that they are clearly in? You make it sound like parents who are helping their children physically feel better are awful and so not accepted of their children with autism and what you called pitiful? Thats a bit outrageous to say to another parent of a child with autism.

  32. erinbreedlove

    Agreed, Dr. Rob. As someone with a developmental challenge and who has worked with children and adolescents on the autism specturm for nearly 9 years, I can say that the vaccination debate is one that greatly concerns me both for the children with whom I've worked and for my future patients when I become a pediatrician.

    In reference to the comments regarding children getting better over time, I am a living testimony that this is true. Your skills for adaptation increase just as any human improves himself each and every day. The delight that you feel when treating children with things such as autism is blatantly obvious, and I appreciate that more than you will ever know. From the perspective of someone who is now old enough to understand what my parents were taught when they were raising me, I've learned that parents are often taught to treat their child as a specimen. You don't see classes to develop coping skills, but rather, you see classes advertising the answers to the “why” questions. While those answers are mildly important, what happened to kids being kids?

    One of my greatest teachers throughout my life has been my twin sister, who doesn't have any major complications. The biggest reason for that is because she has treated me as just another friend and has accepted my struggles as they are. It's an absolute shame that you are having difficulty with parents, as evidence via the comments on the post, just accepting their kids as kids. All children come with challenges, and the best thing you can do, as a parent, is to teach your child that acceptance of the struggle is the number one hurdle.

  33. I teach literature and have come to the conclusion (indeed, Young Frankenstein is inanely funny), that all medical students should read Frankenstein and see what happens when well-intentioned doctors (not the Hollywood version where most people think Frankenstein is the monster) try to play God. Sometimes just because you can do something doesn't mean you should. Medical science is a field that should be entered into with great caution…….so as far as this thread goes maybe only doctors who have firsthand experience can ever truly understand the agony and ecstasy of an autistic child always remembering as much as they enjoy their patients these kids were probably in better neurological shape before the shot. Like the neurologist married to the pediatric nurse who won the case that the shot did, indeed, cause their daughter's type of autism.

    I guess I wonder sometimes………aren't doctors under an oath to do no harm? If there is a shred of evidence that the shots is causing neurological harm shouldn't they be apprehensive about the shot instead extolling the joys of what that very shot may have caused (referring back to Frankenstein…..the heralded experiment did create life…..but, actually, I am thinking if Dr. Rob had been the creator he would have given the monster a name and laid some lovin' on him and the story would have ended quite differently! haha Yeah, I need facetious rehab! <G>)?

    Just thinking aloud really because sometimes you wonder what really happens at medical school where a cult like type of thinking comes out and then you wonder if it may be a certain segment of doctors (not you mind you…….you are different and just like autism we have acquired a taste for you too! <G> Ack! Sardonic humor alert!) have a type of medical school lobotomy that keeps the logic center in check. And I am only half-joking here. Of course, my own doctor somehow was absent that day! <G>

  34. It is important however, to remember that our kids do not get “better” in all actuality. They will always be on the spectrum and they will always be AUTISTIC.

  35. There was nothing in his post about parents being anything but hard workers. What he was trying to state, and did so elegantly, was a commentary on societies tendency to ostrisize disabilities as a whole, he happened to use Autism as an example.He could have written the same about families with Down’s Syndrome (and probably would not have been blasted) or families dealing with stroke, or Tourette’s …
    the point was … that WE as a society loose out on a lot by keeping those with disabilities at a distance.

  36. Did I say you IGNORE your kids? No, you stop feeling angry at the world, feeling sorry for yourself, reading way too much negativity into everything, putting words in people’s mouths, blaming doctors, and REALLY help your kid. Your response is very typical of the “woe is me” parent: picking a fight with everyone.

  37. Nightshade1972

    So true! I was born with hydrocephalus (http://www.hydroassoc.org) on 1/23/72. Roe v. Wade was passed 1/22/73. I grew up believing (and still do believe, 38 years later) that if I'd been conceived a year later and prenatal testing for hydrocephalus had been around at that time, I wouldn't be sitting here right now. The Maternal Unit has a very narcissistic personality. She wasn't “proud of my accomplishments”, she was proud of herself for “putting up with me for all those years”. She liked to present a front of normalcy, but behind closed doors she'd say things to me like “You're such a stupid, worthless, evil, selfish, ungrateful b***h, it's no wonder you can't find or keep a boyfriend! It's no wonder you can't find a husband! The only reason we put up with you is because we have to, we're related to you. Nobody else would want you.”

    It took me 32 years to find a man who accepted everything about me with open arms, an open mind and an open heart. His family have always treated me the same way. I refer to my inlaws as “Mom and Dad”. At this point in my life, the Parental Units are egg and sperm donors, nothing more.

  38. Thank you!

    This is the kind of discussion I like. Your points are well-taken.

    There is no “cult” side of medicine, but there is a “group think” that goes on – especially in academic institutions that doesn't allow for questioning of entrenched beliefs without consequence. It would be foolish to deny that fact. We are, however, taught to always question ourselves and always challenge what we believe. If I think someone has X, the next time they come in I always force myself to ask “does she really have X?” Self-doubt is essential for good medicine.

    I have gone back repeatedly and tried to ask “what if the anti-vax crowd is right?” But each time I have done so, the overwhelming evidence that I have seen has gone against a correlation b/w autism and immunizations. I will continue to re-look at evidence, as will all of the good clinicians out there. We are proven wrong. They do pull vaccines. They did reverse thought on hormone replacement in older women. We do abandon dogmas.

    But again, that must cut both ways. I see incredible close-mindedness in the anti-vax crowd. “I don't care what the evidence says, my son got autistic after that shot!” Both sides have things to learn.

  39. “How about we trust Dr. Jerry Kartzinel and all the other DAN doctors instead??” I know you meant this as a rhetorical outburst, but I choose to answer it. I would trust a doctor who is not selling his own food supplements as “cure” for a genetic disease more than one who teams up with a person who, on the one hand screams about injecting toxins into our children's bodies right after her botox treatments.

    “Jenny is speaking from experience. Most doctors are speaking from what they have been taught, not from what they lived through… it makes all the difference. ” Yes, it does make a difference, only not in the way you intend it to. One person speaking from experience is called an anecdote. A doctor speaking from years of training and decades of hands-on experience is called just that: Training and Experience.

    You are free to follow your beauty queen's advice. Please don't confuse her ardor with expertise. And please stop thinking that if you scream a little louder that will make it all true.

  40. I don’t define “better” as becoming “normal.” Our children intensely feel our thoughts and attitudes towards them. I feel sorry for the kids whose parents are sending them the message that they are less-than, flawed, and broken, all in the name of a “cure.” It’s all about the parents, not the kids.

  41. Hey thanks for writing this..My kids are fabulous-we are lucky as our pediatrician is pretty fabulous as well. I agree we all do need to lose a little normal…and in some cases..I'm thinking it would be good for some to lose a little anger as well..

  42. Here is why I am getting so many angry folks coming around: http://www.ageofautism.com/2010/07/autism-is-no

    Someone felt my calling autism the “new normal” (which I didn't do) was in some way denying the problem parents of autistic children face. Then they brought in a story about a murder-suicide of an autistic child and his mother. Outrageous stuff, folks. They are angry and bitter. They seem to want to blame people like me for their problem.

    No autism isn't normal, but being around the kids and parents I have seen (when I don't treat them as “defective”) makes me wonder how good “normal” is. My sister (with 2 kids with SMA, one who died) faces a reality that is much harder; her son can't talk, breathe without a vent, or move anything but his eyes, and is 16 years old. Her other son died at 6 months. Yet she has not gotten bitter. She does wish things were different, but they aren't and won't get that way. Her grace and love for her son has taught a lot of people incredible lessons of love.

    I don't pity autistic kids – pity is a condescending view of powerful on powerless. I have compassion for them and want their best. I do, however, pity those who would reply with such bile.

  43. “Jenny is speaking from experience. Most doctors are speaking from what they have been taught, not from what they lived through”

    Are you suggesting that physicians don't have kids, siblings, or even parents with autism? I have a sister with autism, many of my physician friends have kids with autism, and in fact, i know physicians who themselves have autism. NO credible physician that i know of takes JM's attempts to gain media attention, to further her own career & sell her own books, with her quite inaccurate rantings seriously.

  44. Nightshade1972

    Although she did say “most” doctors, not “all” doctors, your point is well-taken. Celebrities who latch on to fad “diets” and “miracle cures” aren't any more credible than a parent or patient who does so. It's sad when celebrities use their children's disabilities to further their own careers. It's even sadder when “normal” (i e non-celebrity) parents do it to further their own agendas.

    it's interesting to me, as I've been following the comments to this post, that so many of the angry, bitter commenters who accuse Dr. Rob and his colleagues of “thinking they're god” or “godlike” seem to attach that level of deification to their own physicians. They're bitter because they've been dealt a bad hand, they expect a “magic bullet”, and when they don't get it instantly, and when a doctor doesn't tell them what they want to hear, suddenly the doctors are “condescending”, and “they think they know it all, but they really don't”. There's nothing that says non-mainstream approaches, like acupuncture and biofeedback, can't work in concert with more traditional Western approaches. There's nothing that says patients have to accept everything their mainstream doctor tells them as absolute gospel truth. But by the same token, there's nothing that says a doctor who disagrees with you is “committing malpractice”.

  45. I find it ironic that in an attempt to avoid labeling our kids, you 8 times refer to the children as autistic children instead of children having autism. Labels are difficult to break but I feel their is a HUGE difference in the language. Kids are kids first. Some just happen to live with autism.

  46. I have to disagree, Blackbilledmagpie. If your child improved after removing mercury from their system then that is mercury poisoning-not autism.

  47. Lisakm and Nostalchick… Most autistic chidren to get 'better' if one defines the term better to mean 'learn, grow, improve'. Stomach pain does not sum up autism. Clearly if your child is in physical pain that should be adressed. I don't see where anyone has suggested otherwise?

  48. As a psychiatrist in training, I completely agree with what you've said. I started off feeling awkward and hesitant with my patients with ASD, never hundred percent sure of what I was doing and what I could do better. (To be fair it was the same with most of my patients, at least for the first year of training.) Over the next few years I learned to see beyond their diagnosis, to enjoy them as unique, sometimes delightful and sometimes vexing individuals who were 'special' simply because they don't always play by the rules and expectations of our society.

    I don't think this post has anything to do with whether or not vaccines cause autism, whether or not the multiple alternative treatments work, and whether or not all physicians who treat autistic children should believe JM. It certainly does not imply that children with ASD are 'normal' and their challenges are to be blindly accepted rather than treated. We accept (and enjoy) the children and deal with the challenges the best we can, much like the parents of children with ASD.

  49. Great article!!! At first I was annoyed, then glad that your mindset changed. Just wish new age mothers/parents learnt a thing from your article as children do become adults

  50. Learnt since my son's diagnosis – April 2008, he is 7. That there is a big divide. I am accepting my son for who he is!!! No one is perfect, my son was different and it was not the MMR jab. Have friends who did not give their child the jab and still have the condition?? Just want my son to get the right support and changing people's mindset!

  51. Doc, I have to actually walk away from the computer now, compose myself, then maybe I will come to share what my thoughts are as a Mom to 3 young, beautiful kids, 2 who have Autism. I sincerely think your post was meant to really state that kids with Autism or other related Neurological MEDICAL disorders are not be be feared…however in doing so you have just continued the stereotyping of us parents, and that is the part that infuriates me. I am off to calm down and figure out if its even worth me posting….if I continued the post here I feel I will just be shoved aside as an 'angry and crazy parent looking for something to blame'…

  52. “[O]ver half the U.S. population”? All the parents I know get their kids vaccinated. Their only concern with the growth of the schedule is that it takes time and effort to keep up with it. Impending tidal wave of those with autism. I'm sorry your kid is sick, but get a grip.

  53. I LOVE your comment and I am also indebted to Andy Cutler, PhD. for much improvment!!

  54. I love that JM brings awareness to Autism but I really hate the misinformation and opinions she passes as “facts”.
    The Anti-Vaccine people feel like victims, feel like their children were “ripped away from them” so I can understand the passion.
    However, I don't understand how anyone and everyone who ever tries to see a bright side, tries to pass along a little happiness or good feelings is always attacked for it.
    My child has Autism, it was not caused by any vaccines. I know that for a fact. I am not a victim and he is not a victim.
    I for one appreciate those who celebrate our children… with or without Autism. Those who look at our children as maybe a little off, but still normal. I appreciate people who can love our kids without having to look for someone to fight at the same time.
    This is a good article by a caring doctor… stop reading into it more than what it is.

  55. Dr. Rob, thank you for writing this post!As for parents learning not to mourn: autistic adult self-advocates have been advocating this for a very long time now. It has been 17 years now, since the publication of Jim Sinclair’s landmark essay, “Don’t Mourn For Us” (which you can read at http://www.ani.ac/dont_mourn.html).
    That essay, and Oliver Sacks’s biographical essay about Temple Grandin, “An Anthropologist on Mars”, were the two things I read shortly after my son’s diagnosis 16 years ago, that set the course of the journey we have traveled. He has come a long way, without frantic pursuit of quack “cures”, but with all the love and patience and encouragement and open-mindedness about the differences in the way he learns and interacts with the world that we have had available to give him.

  56. I searched Dr Rob's post and nowhere does he call autism the “new normal.” You know where that phrase does appear, though? Age of Autism. Instead of reading this post, really reading it, Stagliano ran with her agenda and this idea of “new normal.” And your post betrays that instead of reading the post here, really reading it, and going, wait a minute, that's nowhere in this post, you ran with your agenda.

    Yes, there's pain involved in parenting children with disabilities. Dr. Rob's post wasn't dismissing that. His post was pointing out that society needs to move beyond pitying individuals on the spectrum. My three children don't need pity. Compassion and respect, but not pity.

  57. A dear friend of mine has fraternal twins. One of them suffered from something… obviously. She didn't thrive like her sister did and she would often scream in pain. Finally, she was diagnosed as having celiac disease. Diet has done wonders for her in so many ways.

    But… celiac doesn't mean autistic. It's two different things and confusing them is a disservice to children with either disease.

  58. Nightshade1972

    She's right. When I was younger and using online dating services, some of them had a feature where you could see how many people had visited your profile, how many people had left you messages, etc. My “visited” was always much higher than my “messages”. The last time I used a dating service (where I met my husband), I bluntly stated in my profile “I'm neurologically handicapped, unable to drive and I sometimes use a cane when I walk. If I haven't scared you off by now, I'd love to hear from you!” Was I disappointed that maybe ten percent (or less) of the guys who visited that profile bothered to leave me a message? Of course. But I also knew that the people who did respond, like hubby, were willing to look past a “disabled person” to just see the “person”. And I think that's the point Dr. Rob was trying to make. It's natural for a “normal, healthy” person to feel awkward and standoffish around people so obviously different from themselves. But, over time, he got to know his patients as personalities, not just diagnoses. Too many doctors fail to do this either because they lack the empathy or they'd rather not get “too emotionally invested” in patients who might not have positive outcomes. I'm glad Dr. Rob doesn't appear to be one of those doctors. He's not asking for a pat on the back, he's acknowledging his frailties. Good for him.

  59. autismnewsbeat

    “Like the neurologist married to the pediatric nurse who won the case that the shot did, indeed, cause their daughter's type of autism.”

    Except the Poling case doesn't come close to proving vaccines cause autism.

  60. Some of them seem Hell-bent upon ultimately *drowning* in their own bile. And that won't do their children much good.
    The key insight, as I learned more than a decade and a half ago, is to understand the difference between autistic ways of being, on the one hand, and disability concomitant or secondary to autism. The best way forward is to work on mitigating the latter, without getting hung up over the former. And to realize that disability often arises as much because of lack of accommodation or tolerance on the part of the rest of the world, as it does because of anything intrinsic to the disabled person. So a large part of mitigating disability involves removing barriers *extrinsic* to the disabled person. One learns to work both sides of the street — the social model of disability as well as the medical model. I wish all those “warrior moms” out there chasing all those quack “cures” would put just half that energy into removing barriers that our society puts in the way of our kids.

  61. No, we prefer to be called “autistic”. It's what we call ourselves, or at least , those of us who ACCEPT it and move on. (And there are some who don't, who whine and curse “the autism”.) It is inherent in our being, and cannot be removed, not by any means. We can learn, grow, and improve IF we are given environments where we can prosper best. If you have autistic child/ren, accepting it and doing what you can to help them would be the best thing you could do.

  62. Thank you, Dr. Rob, for this great post. I've been autistic (Aspergers) for 64 years, was only Dxd 11 years ago. It had caused me many problems, but learning of my Dx solved many of them. At least, *I* could finally understand me. 😉

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