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

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


Salon.com
Comments
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.
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.
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
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
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.
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.
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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
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.
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.
JOLYNNE My God, yes; all tough decisions and well-intended.
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
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
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
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'd like to review the facts DK relies upon in his opinion that vaxes have been conclusively proven to not alter human DNA.
r
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.
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.
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...
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