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JULY 25, 2010 4:46AM

WHEN I HELPED TO TEAR A FAMILY APART TO SAVE AN AUTISTIC BOY

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      Chances are increasing incredibly fast that you know a child struggling with one or another form of autism. The stats in a minute, but a recent Centers for Disease Control report has put me in mind of one of the saddest and wrenching decisions I ever made in a long career as a division head in private schools. And yet my decision to exit Andrew D. from The _____ School was both heartbreaking and right.

 

     Twelve-year-old, red-haired and handsome, Andy had been initially and properly diagnosed with severe autism but our admissions people had been told by his psychologist that his was, at worst, a mild case, and that he could handle the rigors of a top-flight, traditional independent school, one, like ours that didn't have teachers trained in any way to help him to integrate, succeed, be happy.  

 

     While Andrew was academically very bright, after a two-month grueling daily struggle to make it work, it became clear that the tantrums without apparent provocation, the screaming at staff, the taunts of girls and boys and teachers alike, spending serious time most days in Guidance and with me, and many early exits to his mother's care, we had to consider a change.

 

     Ironically, too--and this saddened me even more in a way--his one-on-ones with me when he just could not cope with peers in groups of, say, between fifteen and twenty, were pleasant. Together we talked baseball, science, books he'd read. We went at chess and a variation of Go, the Japanese board game of territorial acquisition played with white and black stones. And we talked about his perceived "enemies"--his word--adults and kids. I'm no therapist and I never pretended I was, yet it became clear-as-a-bell to me that a one-to-one situation, or at least, say, a three- or four-to-one, was what Andy needed every day. He never raised his voice in my office and he tried to make eye-contact more than a few times.

 

     Yet a second struggle now daily layered over the first, this one with Andrew's family. Mr. D. fiercely wanted him in the school that he himself had attended. Yet Andrew's lack of common social skills, inability to pick up on cues from adults and peers, his becoming overwhelmed in groups greater than five or six, his inability to act within an acceptable range of behaviors, made school life for him increasingly miserable. His three older brothers had graduated from our school, as had, as I've said, Andrew's father who was  especially was desperate for Andrew to complete the family cycle. Our decision split Andy's dad from his eventually more reasonable mom and I have no doubt contributed to their separation.

 

     We recommended a school far better equipped than we were, in mission and program. After a three-month painful push-and-pull with the family and his psychologist--we did not want to expel the child; that would mean he'd have to explain that from a defensive posture for years--Andrew withdrew from our school, enrolled in a new one and thrived. Our relationship with Andy's parents had soured past repair and so had his parents' relationship with one another in many ways, but we had served Andy (and our other students). The new school's staff disgnosed him with a particularly tough form of autism, well along the spectrum.

   

     I'm put in mind of Andrew because the Centers for Disease Control and Prevention recently noted that disgnoses of autism and other, particularly tough variants of autism are increasing at remarkable rates. A new study looked at records of 400,000 kids nationwide.

          .In 2007, the incidence rate was 1 in 150.

              

          .In 2000, the number was 1 in 300.

     The study's lead author says she cannot be certain why such a sharp increase was discovered. Dr. Catherine Rice says that no one, simple explanation is apparent. Disgnoses may reflect increased symptom-awareness sparked by advocacy groups, or, perhaps, the disorder is in fact increasingly more common. No one has a handle on why the incidence rate has jumped this much.

 

     Still, a doubling diagnosis rate in seven years is not something reasonable people just dismiss as somehow politically- or advocacy group-motivated as some media commentators do. Michael Savage has, and to no end, and for ratings, others have aped his dismissive, venal hate. They claim parents of these kids simply want your money and avoid responsibility for what is simply poor parenting.

 

     More serious study needs to be done so that children whose conditions do fall within the range we call autism will have a better shot at living happy lives and contribute as effectively as possible to family, community, and economic life ad adults.

     I'm going to ask after Andrew soon, look him up; he should be close to twenty-five now.

_______________

CDC Study Finds Autism More Widespread than Previously Thought

 

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I'd be interested in your take on this story and/or of a very tough decision you've made about your own or another family that you know was right but which, nonetheless, had some unfortunate fallout.
I think between 2000 and 2007 they added the full spectrum to the diagnosis of autism, some of which, like Asperger's, were likely thought to be something else prior. I cling to that instead of the notion that it is becoming more prevalent.
Linnn thanks I have a sense, tho, that it is more complex.
I ahve a 29 year old autistic nephew.. He has done really well for himself.. thanks to my late sister making sure he did. rated with hugs
Excellent post! I had read it was rising was not at this rate. Theres this whole controversy about autism and children's first shots, that I hope has been proven false. I also read where more kids or being born that in another age would have never lived. What with new technology and better prenatal care they not only survive, but can do so from an earlier pregnancy. I don't have any answers, but I do know the government is not making enough money available to treat these kids one-on-one. While the right are anti-abortion, their concern fades after the birth. My daughter was a teachers-aide for one child. He had to wear a football helmet, and she sat by him at his desk during the school day and helped him. Those funds are being slashed. This is a very interesting post and I can't wait to see what others think.
Linda my son is dyslexic the family and other supports are key. He's 20 now and reads just fine; but it was a very tough go for him when he was younger.
Scanner uhmhmm it'll be some Great day when this culture wakes up to genuine need. :)
Jon, as the parent of two autistic children I have to say that you made the correct decision for the child in question.

In our daughter Angel's (age 7) case, her autism requires that she be in a self-contained classroom. What is interesting about Angel's classroom is that our daughter Lexi (age 7) is deaf and in the same classroom so the instruction is *both* verbal and in Sign Language... which seems to help Angel and the other autistic child in the classroom to have fewer "meltdowns."

In our son Harry's (age 17) case, his being autistic was complicated by severe PTSD and in the final analysis the "best choice" for him was to be institutionalized for several years. He needed daily treatment for the PTSD for several years and there was simply no other way to ensure that he received it. That was the second most difficult parental decision that I have ever made.

Sometimes, as parents of autistic children, we are so busy fighting the individual daily battles that we lose sight of the over-all picture and what we are trying ultimately to accomplish. It is always good when educators remind us that there are goals beyond getting through the day or the week.
Thanks for shining some light on this problem, Jon. It's complicated and public schools are trying like hell to ignore it, partly because the costs are so high and their budgets are so tight. The answers can't be easy - they never are.
I have Asperger's, recently diagnosed after a lifetime of struggle with its challenges. And it's been diagnosed across 4 generations of my extended family, lending strong credence to the theory that there is a strong genetic component involved.

So I'm part of the statistical increase, but let's get realistic. For all intents and purposes Asperger's Syndrome was not even on the public radar until about 15 years ago. And in the DSM-V that is expected to be released later this year, it will probably cease to exist as a separate diagnosis, but will now be folded into the broader classification of Autism Spectrum Disorder (ASD). So stats alone don't tell much of the story.

The fictitious link between vaccinations and autism has now been conclusively, overwhelmingly proven to be false. So now perhaps we can turn our attention as a society to the genuine facts of the prevalence of ASD in our population, and to addressing the special needs of children who were born with this genetic difference.

You made the right decision, Jonathan.
In my heart of hearts, I am leaning toward an environmental explanation for the increase in diagnoses on the spectrum. I have nothing to base that on -- no science, no data, no statistics. Something is going on that can cause a doubling in so few years.

I wish all schools would focus on their actual client, the child. Parents have all kinds of sometimes conflicting motives for making decisions. A school should always have what's best for the child at the top of their list.

Lezlie
Jon: I too taught a exclusive private school, and we also were not equipped to handle any child with special needs. Our curriculum was just too rigorous to have any behavioral issues. Normally, our Admissions team could recommend a specialized school to the parents rather than our school. The legacy issue and a recalcitrant father added another difficult dimension to your problem. You did the right thing for Andrew. I would love to see how he is doing today. R-
What a tough topic this is. I'm glad you're putting such thought into it and that you tried to help that boy.
I believe that your job was to help this child and to see he was educated. I believe you did that. There is every chance his parent's marriage would not have survived if they had never met you.
Jon, brilliant as usual. I have a 34 year old second cousin, who went through so many diagnosis until they finally found Asperger's. The guy is brilliant to the extreme, and walked out on his MA dissertation because he didn't like the way the professor looked. He later went to law school, and passed the NYS Bar Exam on his first try! His parents were very involved and could well afford all the treatments, tests, special schools etc.

My question is, what about the average family that could not afford all these things? What happens to that child? There is a young man I know who was diagnosed as retarded because he wouldn't speak, and was "slow witted". Luckily his family cared enough to try all kinds of tests, some at great cost (which they borrowed from other family members) to find out he was not retarded, or "slow witted", he was profoundly hard of hearing.

When it comes to health issues, things are not always what they appear to be, especially when we don't want them to be. This is why it is vital for others to intervene, even if it's "none of their business". Tikkun o'lam
MRS RAPTOR Thank you; and yes, wrenching; I felt I had to think of Andy's long-term interest.
MATT you bet your life this is never easy!
DAVID Thank you. Even when we know decisions like this are right, support such as yours is very much appreciated, even so many years on.
LEZLIE I wish, too, that we knew whether or not environmentsl or brain or both. The best interests of the child must come first, yes.
DAVE I appreciate your support; that you are a fellow teacher in roughly a similar environment, for you to say this means a lot.
KATE Money spent on wars when we could solve this, cancer, so much. Madness.
CAROLINE Thank you so much.
LIB YES YES YES as to the parents!
ADELA Boy do you nail it. Thanks! And yes, of courseschools must, on occasion, appear to parents intrusive...it's our job at crucial moments with kids.
I have a 42 year old nephew who was misdiagnosed all his life from ADHD to diet deficiencies. He has Asperger's and had a diagnosis 3 years ago (too little too late). He is very bright but socially awkward. (They did not know of Asperger's when he was growing up -- not even his father, the psychologist!). I spoke of him to a friend , who happened to be a pre-school teacher. She was the one who knew the symptoms and told me to have him tested.

He has not been successful at all. He lives at home with his parents and doesn't have a job. He did go to college and majored in communication! (a major mistake). He has behavior troubles in every school he attended and at camp. He was expelled from many schools. You can imagine his self-esteem.

It saddens me that he is drifting through life. He has had recent therapy and does try social situations like singles weekends in the Berkshires and crossword puzzle conventions/competitions.

We have cousins on my dad's side who have young autistic children. They are going to special schools for autism and are thriving

My point is: with the right diagnosis and with teachers who were better trained, he could have led a more fulfilling life. I don't know what his future will be, but at this point, I do not have much hope.
Ina thanks so much for sharing this. Such messed up funding priorities we've got.
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Brianna I appreciate your perspective and support very much. :)
I can relate to this personally in that I have a child the schools don't exactly know how to handle. It's not autism in this case, it's behavioral issues combined with physical disability and intellectual capability, and it turns out that's a combination that doesn't categorize conveniently.

Though I think there may be environmental issues responsible for some of the changes in numbers (like Lezlie does) though by no means all, I also think that inoculations aren't the issue. My guess on that one is that the age such behavioral changes kick in, perhaps due to hormones, and the age at which certain inoculations are given are really close and that there are people assuming that such a correlation is an indication of causation. Not necessarily.

By the way, you did right. It's the kid who has to be the priority. If the parent can't handle that, that's the parent's issue, and you're not responsible for that. If having a child with a disability embarrassed the father, he should see a therapist.

Rated
Kosh ty saddest of all is that the psychiatrist was clearly in the dad's pocket.
you also got me wondering about Andrew. I've seen many families torn by the inability to cope with or accept a true diagnosis concerning family — child.
Chuck my hope is that the family reconnected after Andy started doing well at the new school.
I think that most parents of autistic children would have been grateful to have had you for an interventionist. You demonstrated the maximum effort, kindness and ability, even if you were not prepared to deal with such severe autism. Get rid of all regret.

As for the rise in autism, many of us have been alarmed and wondering why, why, why the astronomical increase in cases! Amazingly, the topic seems to be blacked out by the media, which should be keeping this at the top of the news. It is an epidemic and we need to find out if it is not a pandemic.

If it is truly genetic and not environmental, then there should have been testing and counseling. Most of us African Americans began testing for Sickle Cell in the 70s and testing is now mandatory for newborns.

It doesn't make sense that, if genetics is the reason, that Aspergers is not as aggressively followed.
Jonathan, you've suggested comments about tough decisions in families that had some unfortunate fallout. In my family, we do not have anyone who has been diagnosed with autism (although I know and have worked with autistic children). However, we do have several family members who have suffered from mental illness. My mother, in particular, suffered from paranoid schizophrenia. The effects on our family were devastating, leading to divorce and separation from her children. My next youngest sister acted out, and my father -- struggling to raise three emotionally compromised children while emotionally compromised himself -- committed her to an adolescent mental health facility. That is the difficult decision in our family, and -- although I do not think it was the right one -- it did have some unfortunate fallout. Personally, I do not think my sister was ever mentally ill. My father simply did not know how to parent her. He often told us how guilty he felt about focusing so much of the family's financial and attention resources on my sister. And I know my sister wishes he had never made the decision to do so. Every family, I think, has its own stories of difficult decisions and lifelong regret. Whether the decisions were right or wrong is not such a simple judgment to make. My father thought he was doing the right thing.
You did the right thing for the child and while it maybe difficult to understand, parents do not separate for reasons like this, they do it for a myriad of dysfunction in the marriage that may be acknowledged or not. This was just the tipping point. There are many decisions that people must make and in time the wisdom of them both good and bad comes to light. I think upon contacting this child, you will learn that you did the right thing for him at the right time and his parents are happily remarried and a part of his life. That is what I would expect, or at least hope for. Good work John. R
I first became interested in Autism way back in 1968, when the condition was rarely diagnosed, and even more rarely talked about. In particular, I took exception to Bettelheim's belief that autism was a consequence of emotional frigid mothers...but I was more intrigued by the question of how autism was being diagnosed.

In recent years, I've become convinced that the alarming increase in the rate of autism stems more from the continual redefinition of autism to include a wider and wider spectrum of associated conditions.

The epidemic is an epidemic of diagnoses, not increased incidence.
XENO thank you and btw there is no blood test for this range of conditions.


JOLYNNE My God, yes; all tough decisions and well-intended.
Seems our educational systems are moving further and further away from focusing on the individual child. Sit still, hush and regurgitate what we consider important and for god's sake don't be odd.
In order not to be redundant: what Linnnn said, what Sage said and what Amanda said. Thanks for bringing this to our attention.
John, Sometimes what is best for the child is not what the parents want I have worked with children who have had mental diagnosis and it never an easy answer with some of these kids. A person has to do what they think is best for the child.
Jonathan, as an educator I have seen an increase in kids on the spectrum, both diagnosed and not yet diagnosed, since many parents refuse to have their children tested when recommended by the school.

As you said, the answer for many is a smaller setting of 4 to1, 1 go 1 student/teacher ratios. For many to say that schools should just focus on the child -- there is a definite monetary factor here. For example, in our school we have 800 students, at 1 in every 150 students, that would be 5+ students that would need an outside placement at $50k - $200k plus - each. That kills any school's budget.

As someone commented, in most cases there is just no easy solution. In Andy's situation - his parents were already paying for an elite private school - you chose the absolute correct solution. Sooo lucky for Andy!

P.S. This comes from the parent of a severely disabled child, so I am able to see both sides of the problem. Truly there is no easy solution.

The kids
Dang, forgot - (R). :)
You absolutely did the right thing. I had a child who was struggling with behavioral issues in a small private school. The director suggested we keep our child there, that he would be able to help. We were desperate and agreed. But his attempt at kindness kept our child from getting placed in a more suitable environment and added to huge problems that impacted our family for years.

Our story has a happy ending. We finally got a good diagnosis and treatment and our child is now thriving as a young adult.

Again, you did the right thing -- ultimately a kindness for the child.
You absolutely did the right thing. I had a child who was struggling with behavioral issues in a small private school. The director suggested we keep our child there, that he would be able to help. We were desperate and agreed. But his attempt at kindness kept our child from getting placed in a more suitable environment and added to huge problems that impacted our family for years.

Our story has a happy ending. We finally got a good diagnosis and treatment and our child is now thriving as a young adult.

Again, you did the right thing -- ultimately a kindness for the child.
If I’ve learned one thing in my 35 years in special education it’s that almost every child can do quite well in the right educational environment. Sounds like the correct thing was done on your part for that student. I hope he is doing well.

We’ve come a long way in developing a better understanding of autism and autism-like conditions in the past 50 years and at the same time we have much to learn. As with most human conditions the causal factors are likely many, and the degree of intensity and type of manifestation of the symptoms is varied.

And to the three or so commenters who took a swipe at public education (you know who you are) I would ask you to spend some time in a variety of public schools and you’ll be pretty amazed. Perhaps the district you are familiar with is pretty low performing; but, there are lots and lots of superb things going on out there. Many students with autism are receiving really good services (and yes, there is room for improvement) and this is a big change from ZERO services when I began my career in the early 70’s. So before you make anymore sweeping generalizations about the public schools – get out and visit some of them.

R
I'm hoping you can give us some follow-up on Andrew. I wrote a piece awhile ago that mentions some of the tough choices we've made.
This is a tough topic. Having no experience with autism or special needs children-- other than a son who was labeled various times (incorrectly) throughout his elementary school years, when the correct label was merely "eccentric" as he was not disruptive or poorly performing -- I can't speak to what these parents go through or to the disorder as a whole. But you did the right thing, looking out for this one child within your care.
Hey Jon:

This might not have come through the first time but basically I wanted to say that mental illness let alone Asperger's is a tough call in this country. People are just too willing to push it under the rug.

I definitely think you made the right decision here with this kid. Even though it broke up the parents, the kid was helped in the long run. And it shouldn't be your problem that they decided to separate. That was on them.

This was another informative, sensitive and well composed blog.

Again,
Buddy
The right thing to do is usually the difficult thing to do.

I am the mother of an autistic child. But I am also a public school teacher. My experience is I see a lot more students struggling, a lot more student with behavioral issues. A lot, Jonathan, sometimes to the point that teachers feel overwhelmed.

My un-scientific opinion: it's environmental. Has someone paused to consider the effect of the hours on end children spend in front of the t.v. where images change constantly every few seconds? Has someone thought of how all this exposure to technology affects the brain? What about the kids taking classes earlier and earlier even when their psychomotor skills and their emotional maturity are not ready for it? What about all the technology the mothers are exposed to during pregnancy (ultrasound/studies)? What about all the chemicals in our food, water, air?

You did the right thing.
I have a son in the "spectrum" and we went through hell for a couple of years, but luckily an anti-depressant seems to have calmed some of the over-sensitive nerves he had and support from teachers and counselors helped him find better ways to cope. I had a two year battle to get everyone to agree that the medication might help, when I could see it working after a few weeks. Of course, when you've known one autistic child, you've known one autistic child. We've been lucky, particularly to have insurance and have found a public school that could draw on resources for him. I think that the environment children are raised in has changed quite radically in 20 years and that we might find one part of the problem there.
It's sad that the kid's dad was more concerned with his ego gratification than with his child's well-being. This is a hard thing to live with, but it just makes more sense to face it and work with it or around it than to deny it.
Jonathan, sounds to me as though the father's ionterest were into himself far more than his son. It wasn't you or your school that dorve the parents apart. It was the dad. You and yours may have been the key to the boy's future success. I look forward to hearing about your follow-up. {{R}}
There are genetic links and there are also many facts which haven't been disclosed to the public re the growing numbers of autism.

I'd like to review the facts DK relies upon in his opinion that vaxes have been conclusively proven to not alter human DNA.
You have tremendous compassion. I admire you for doing what was right for the child, regardless of fallout. It is a very difficult thing to do.
I also agree with vanessa on the causes of autism. The chemicals, diet, technology and influences on our children from our lifestyles and environment cannot be discounted. And Amanda's right too. We want to make all the kids fit in the same box. They can't, and it's tragic.
A tough decision, but a wise one. Hopefully it was a wake up call for the family to get the boy into the right setting so he could succeed.
r
jonathan, i admire and respect your integrity and courage - you went against the stream of the parents to look out for this boy, and i do not have any doubt you did the right thing, and that the cost was worth it - their marriage wouldn't have fallen apart if there weren't serious flaws prior to this incident.
this post also reveals the serious damage misdiagnosis can cause, and the weight of responsibility it should carry.
it seems logical to me that as more people become educated about the symptoms of PDD, as more possible sufferers get tested, the numbers of those diagnosed positive will go up.
but the size of the jump surprises me even though i have nothing to compare it to. i'm with L in the southeast in my suspicion of environmental/dietary/lifestyle causes. the greater tax on our systems from increasing pollution and toxin exposure combined with toxins ingested and lower nutritional value of food, even "good" food, and frazzled lifestyles - we are what we eat, our brain and body must influence our health, mental and otherwise. Our circuitry is influence by everything we do and are exposed to. OK, i'm not expressing myself well here, so i'm moving on and leaving this drift behind.
Ironically, our school district has just declassified Aspergers and resources are almost non existent for these children.
Vital read, Jonathan. I once had a student who drew and wrote things that I felt revealed depression and suicidal tendencies. I conferred with the counsellor and called her mother 3x. Mom was always "busy" with decorators, architects, or contractors. Finally I gathered my courage, made an evening appointment to stop at their house and she was gone...busy with an art museum fundraiser. As I was returning to my car, dad returned from a business trip and I finally had a chance to talk with a parent! I'd documented all my contact attempts and all the incidents, drawings, and writing of concern. He was silent and redfaced throughout my rehearsed little presentation. Two weeks later, the girl told me that her parents were separating and that she was going to live with her dad. ? I dunno if this qualifies or not, but they divorced by the next year and the girl seemed to emerge from her dark corner. ...no nasty fallout, but the only intervention I can think of tonight. Thanks for your work...congrats on the EP!
Strongly noting the inability of the elite private school to deal with a compromised kid - in the current political effort to eliminate public education, using as rationalization that outcomes don't compare to elite private schools, why is this discrepancy of student needs not considered more seriously?

Autism - clearly the final word is not in, not even on the influence of vax. Yes, "scientific research proves conclusively" but what science is worst at is recognizing what science doesn't recognize. It not just doesn't know what it doesn't know, it completely denies its existence. In this case the research, in my humble opinion, had to be driven by the great social benefits of vax and proving their value. Just because an idiot runs to the front of a crowd, pretending to lead, doesn't mean the crowd is entirely wrong.

I am not claiming that vax cause autism, just that all the various interactions of genetics and environmental influences on such a complex and varied condition cannot possibly be understood fully.

I stopped my child's pertussis vax series in 1980 because of serious, scary and accelerating CNS reactions (totally alienating his pediatrician.) He was a relatively safe case because various childhood illnesses led to delays in his vax and by the time I refused - only the final sot in the series - he was near the end of the high risk age range. I changed doctors after her hostile reaction to even my questions and when it came time to get the boy into school with incomplete shots his new doctor signed off, saying further pertussis had been absolutely contraindicated for him based on the symptoms I described.

He lived, no pertussis, does well, no (apparent) autism though he was pathologically shy as a child - that sort of runs in my family, though.
This stuff is so tough, you did the right thing, Johnathon.
Timely post --- it is scary how quickly those numbers are rising. What I come away with most is your compassion, I feel a deeply caring man in each post of yours I read...
I had a pre-school student who had autism-- the mother hovered so closely, while the father denied he had an issue at all. That boy raged at the mother, tuned out and rocked while around the father...no wisdom here, I've just wondered about my most extremely affected student over the years, he'd be about 13 now...
How sad that his father was more concerned with carrying on family tradition than what was right for his son. I am glad you were his advocate! R
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