July 14, 2006

Hysteric/Hysterical, Tomayto/Tomahto

The Vampire is a handsome, charming, funny, creative, enthusiastic, sensitive, and occasionally brilliant kid.

The Vampire has Asperger's Syndrome.

AS is a disorder on the Autistic Spectrum. It has a wide variety of symptoms. Few people have *all* of the many symptoms associated with AS, and because many of those symptoms are shared with other 'popular' disorders (Attention Deficit Disorder, Obsessive Compulsive Disorder, various Behavioral Disorders, various types of learning disabilities) AS is difficult to diagnose, and is often misdiagnosed - sometimes multiple times - before the correct diagnosis is arrived at.

AS is associated with a wide range of comorbid conditions - Anxiety Disorder, Obsessive Compulsive Disorder, Oppositional Defiant Disorder and Sensory Integration disorders are common (although many of us believe that some of these are less a disorder in themselves and more a reasonable reaction to the world as a person with AS experiences it).**

The most common 'symptom' that all people with AS share is difficulty with social interaction. Recent studies of patients with AS show that instead of reading faces and body language with the part of the brain that is activated in most people, people with AS use the same part of the brain that is used for assessing inanimate objects. In other words, in the brain of a person with AS, there is little difference processing-wise between a person and a chair.

Which means that whatever they do when dealing with people, they have to learn by rote rather than by instinct... they learn to interact with others the way most people learn to play the piano. And in many cases, they have to learn it without the benefit of a knowledgeable and understanding teacher. They have trouble with 'normal' social functions, such as making eye contact, interpreting facial expressions and body language, and using the abstract thinking processes that allow people to communicate beyond literal/factual statements. They tend to be literal in their communications and their interpretation of the communications of others, and as a result they tend to be very gullible... which makes them irrisistable targets for bullies and other predators.

Which is a partial explanation for the Vampire's school experience, and why by the end of 5th grade he was experiencing uncontrollable meltdowns, frequent bouts of self-destructive rage, paranoia, and suicidal depression. Counseling at school had proved worse than useless, and repeated attempts at finding a support group for kids/teens with AS or any sort of Social Training ended in frustrating failure.

In spite of our moderate income and lack of adequate health insurance, we spent a great deal of time and money trying to find help for our suffering child.

Easier said than done. Adequate treatment for AS is still very difficult for most people to find, in spite of recent advances in understanding of the syndrome. More importantly, parents not only find it difficult to get help for their child when they turn to the medical and educational 'experts' - they often find themselves victimized by the very people they turn to for help. The following is just one example.


I am forever and officially labeled a 'Hysteric' in my son's medical records - not because I raised my voice or got agitated, but because I calmly and rationally explained to several therapists that due to:

a) my son's physical issues, some of which have to do with growth and hormones and bone age (some of the meds prescribed affect to some degree growth, weight gain, and hormonal development)

b) my family's strong history on both sides of having severe 'adverse reactions' to medicines in general and neurological medicines in particular

c) my husband's family's strong history of addictions, my son having the type of personality and history that is particularly prone to addiction, and the fact that the meds in question were stimulants and tend to need to be gradually increased in dosage/added to over time

d) the studies done on these meds showing that they have a relatively low rate of effectiveness on people with multiple co-morbid conditions, which my son had

d) the lack of a clear understanding (even among doctors and pharmacists) of what exactly these medicines actually do, a lack of long-term studies on what the medicines recommended do to an immature brain when used over time, and a significant history of adverse effects in a not insignificant number of children... including suicide

e) the lack of a clear and consistant diagnosis for him thus far (AS was the 5th and hopefully last in a line of changing diagnoses we'd been given during his school career) on which the prescription was based


e) the emotional/behavioral problems that he was having were provably directly related to an adverse environment (school), and abated when he was removed from that environment

... I had decided that medication was not the right *first line of treatment* for my son. I made clear that I wasn't ruling medications out, simply that I wanted to try other treatments first - ones that weren't invasive, and had less possibility of harmful side effects.

One doctor told me that 'withholding' medication was child abuse and tantamount to refusing to give a deaf child hearing aids.

One admonished me for being Hysterical and Paranoid.

One did the same, and added that we weren't in the Dark Ages anymore and told me, "Stop descending to the same idiotic, caveman level of people like Christian Scientists and Scientologists." (does my reasoning above seem reactionary & idiotic?)

One told me that I could 'withhold' (again that word, as though my son were pleading for help and I were refusing him as a punishment) the medications for a while, but it was pointless... he would not get better without, I would be forced to medicate him sooner or later.

They all agreed (as did the educational Experts that we consulted) that homeschooling was the last thing in the world we should try, as it would deprive him of the exact Socialization/Social Practice that he so badly needed. Even though it was the School version of Socialization/Social Practice that was causing these problems in the first place, and after 7 years of application the Vampire had not significantly advanced in his understanding or application of 'normal' social behavior.

His peers were rapidly leaving him behind... and increasingly they were ostracizing and punishing him for it. The universally prescribed solution was to put him on a round of drugs and increased exposure his School Peers' tender mercies.

I tried to be patient and reasonable. I carefully took their advice as far as school and behavioral/therapeutic interventions went. I took him to regular sessions with therapists. We searched for a better school environment for him, even in private schools that we could not really afford. He even tried a week of schooling at our lovely local Waldorf School; unfortunately he found the academic pace too slow and although the other kids were polite and not unkind, the teacher felt that his 'sophistication' (in 5th grade his jokes tended towards memorized complex political satire, and his other conversational gambits involved movies and other Media-driven interests, which are discouraged for Waldorf youngsters) made him unlikely to 'fit in'. Not that 'fitting in' was even on our radar screen by then. We just wanted to have hope that he would survive his adolescence.

In the end, with a great deal of trepidation and against the strong urgings of the Experts*** we had consulted, we decided to try homeschooling.

Within six months we had our cheerful, confident child back again.

Within two years he had learned more social skills from other homeschooled kids than he had learned in 7 years of school... and his social interactions were all positive. He went from being bullied and ostracized to having more social connections and appointments than we were able to schedule in. He will probably always be considered Eccentric/Odd, and he will probably encounter social environments in which he will find it difficult or even impossible to function successfully... but he knows there are environments in which he can succeed, he knows how to find and make friends, how to get support in interpreting the world, and hopefully he now has a greater ability to Cope.

And we did it all without recourse to messing about with his neurology.

But it was clear... it was made *abundantly* clear by the 'Experts' we had voluntarily consulted and paid for... that given the chance they would force us to medicate our son, against our will and his own. I have to give some credence to the thought that the written reports labeling me as a paranoid hysteric, and the pointed references to Child Abuse/Neglect may in part have been intended as a potential legal groundwork should the Experts feel that I was going to stubbornly refuse medication after a period of time (one therapist specified six months as being the outer limits of the time she expected it would take before I would, "...be forced to change (my) mind and use medication").

This is not the only, or even the most egregious case of interference and bullying by the medical (and in this case, educational) establishment towards my family, not to mention friends and acquaintances.*** And legal interference/enforcement in medical treatment is becoming more and more common, and more and more intrusive, in the last decade or so. In at least the case of the rapidly increasing incidence of legally forced electroshock therapy for the mentally ill, and forced drugging of the elderly patients in our nation's nursing homes, it's becoming alarming.

Is this how you will want your parents treated when they become too old to care for (or fight for) themselves? Is this how you will want to be treated when you have to decide on treatment for a catastrophic illness of your child, your spouse, yourself?

The incidence of Autistic Spectrum Disorders is thought to be on the rise, beyond what increased diagnosis could account for. More info on AS - including symptoms, resources, how loved ones and teachers can cope, etc. - can be found here.

This isn't a blanket condemnation of Experts, or of doctors. We continue to be extremely grateful to our son's fabulous pediatrician, who has always been supportive and helpful in every way. Our family practitioner is wonderful, and we've met with specialists over the years who have behaved perfectly reasonably and ethically. I don't expect doctors to be omniscient... in fact, my complaint is with doctors who are inclined to believe themselves to be just that.
I respect the years of training and experience they have invested in their field of study. I just want them to respect the years of training and experience I have invested in *my* field of study, which is my unique and specific child. I am paying them to be my partner in helping this kid of mine; I am not trying to hand the responsibility of raising him over to anyone, and feel that since *we and our son* are the ones who will be held accountable for his behavior and are the ones who have to live with the results of whatever decisions are made, we should be the ones with the final say as to what those decisions should be.


Blogger Tink said...

Wow... Bless you for being so open about this! You are an amazing woman/mother. Not many could have faced the criticism of "experts" without breaking. Don't you feel like calling up those morons and saying, "SEE?! My son is healthier because I DIDNT listen to you. You should shove that degree up your backside."

10:32 AM  
Blogger jewels v said...

I want to assure that not all the 'experts' out there are going to force their opinions on you. I appreciate that you gathered all the information you could on your son's condition and made an informed decision, based not only on the books, but your knowledge of your son and changed his life for the better.

Thank you for the reminder that I may have some book knowledge, but the parent is still the expert on the human being and spirit of their child. Us school therapist/counselors like to follow the books, it makes our job easier, we just cannot forget the individual and the uniqueness that makes them who they are.

11:18 AM  
Blogger mrspao said...

Your son is a living testament to you. He sounds pretty amazing considering all he has been through and that is thanks to you. You should be so proud of sticking up for him.

12:00 PM  
Anonymous Anonymous said...

Sis, I am afraid that I will have to be your amen corner on this one, as much as you dislike blogs that are simply amen corners (duck).
This is a shameless and grovelling "amen" from a fellow mom with bright, complex children.
I have met the Vampire personally and my kids utterly worship him and we have found him to be personable, courtly, sweet, brilliant, humorous, and any number of other things. So I personally witness and take oath before the gods of our ancestors and the entire Internet Public that this kid is a Good Kid and that you have indeed rescued him from a fate worse than death in the public schools and offices of the chemdocs and that the Machine just crushes kids with a complex, delicate beauty like that, and you have discharged to the full your ultimate duty as Mom and Guardian of this child's Being, and I hereby Salute you and your Staunchness and Encourage You to Just Keep On Keeping On Doing It and, and, and, "You Go, Mom!"
Amen, sistah!
Love from Sis

12:59 AM  
Blogger mE said...

Tink: Thanks! And... Yes. I do.

Okay, I feel a little ashamed of that, because it's probably not the *nicest* urge. But I am a moderator of an e-list for parents of kids with AS, and unfortunately I just hear this story SO often, parents who are being bullied and actively abused by school officials and therapists simply for trying to look at a *range* of options, rather than just conveniently slipping down the pre-arranged chute the System recommends.

Mostly, though, I want to show them because I know that at least a few of the people I spoke about had good *intentions*, and although their conviction that being the Expert meant that they were Right was arrogant, they were also sincerely concerned for my son's well being. I'd like to show them that there are alternative options that they can *also* support when they speak to parents... that they have a wider range of choices to provide for their patients.

Jewels: I notice that although my postscript tried to alleviate the impression that I think all Experts are Evil, I mentioned only medical experts. I apologize... I absolutely feel that the school counselors who worked with my son had good intentions, as did (most of) his teachers. Some of them did traumatic damage to his psyche, but they were *trying*; in some cases they were trying very, very hard. Having worked specifically with EBD kids in an economically depressed area of an inner city public school system, I have a great deal of respect for teachers and school counselors. But it needs to be understood that the school system itself is set up in such a way that it damages certain types of kids (and certain types of wonderful, dedicated teachers & counselors, too!).

Mrs. Pao: Thank you. I'm very proud of him... and to think I made him myself!

Sis: Awww, now you just made me cry... !!

7:03 AM  
Anonymous mamatulip said...

This post blew me away, because to me, it makes so much sense. I'm proud of you, for standing up for your son, and I'm proud of your son for being who he is, and thriving all the while.

I wholeheartedly agree with this statement: since *we and our son* are the ones who will be held accountable for his behavior and are the ones who have to live with the results of whatever decisions are made, we should be the ones with the final say as to what those decisions should be.

11:51 AM  
Blogger jewels v said...

There is no need to apologize. I work in a community mental health organization that is contracted through the school system. Not only do I deal with the arrogance of the medical experts, but I also see the well-meaning, but often misguided and down right ignorance of teachers when it comes to mental heath issues. Too many times I have heard "He/She is not (fill in the blank with diagnosis), he/she is just a bad kid." Also I cannot leave myself out of this, I struggle sometimes with my own short falls. I love my job, and I get to see the difference I make in kids on a weekly basis. But I have also come across experiences that seem to drag me back to square one and I remember how limited I can sometimes be.

Unfortunately your experience with the Vampire is too common, esp. when it comes to Psychiatrists. I am good at my job. I'm extremely secure in that. I have a counseling degree with a focus on families. But I think that the main reason that I am good at my job is that I recognize that; 1. The Parent is the true expert, 2. The Parent and child set the goal, and 3. I don't know it all.

Don't worry about me taking offense at what you had to say. It rings very true.

9:55 PM  

Post a Comment

<< Home

Site Feed