The Couples Tool Kit
Working together as a team of three — by Jill Edelman, M.S.W., L.C.S.W., Specialist in Couples TherapyArchive for Asperger’s
Who Defines Disability? The DSM V and Autism: 1-23-12
Who Defines Disability: The New York Times last week published two articles back to back regarding the controversy in the medical and special needs communities over the revamping of the Autism Spectrum diagnoses including Asperger’s Syndrome and Pervasive Developmental Disorder NOS (“not otherwise specified”) for the 2013 publication of the DSM V also known as the Diagnostic And Statistical Manuel Of Mental Disorders. This is a large volume produced by the American Psychiatric Association and is the bible that guides the medical and mental health community in establishing parameters for the diagnostic categories that determine insurance coverage, treatment protocols and special education categories. The concern is that by refining Autism diagnoses, those with the milder forms such as Asperger’s and PDD-NOS will no longer qualify for treatments that have been deemed essential for their development. The fear is that services such as speech and occupational therapy, neuropsychological assessments and social skills training covered by insurance companies or provided by public school special education departments would no longer be available to children who now qualify under the current DSM IV designations. This is scary business for many families and touches upon issues that make raising a special needs child riddled with fear and feelings of powerlessness.
Spared For Now: Our daughter is not one of those with an Autism Spectrum diagnosis. She falls into the amorphous category of cognitive disability, neurological impairment or the stigmatizing and hateful Mild Mental Retardation, yes that word, (DSM V may use the diagnostic category Intellectual Disability in its place) because her I.Q. meets those requirements, though I prefer Dr. Michael Powers’ description that she is in fact an Artichoke. That is why years ago when her scores came in, it was clear that when she aged out of our school district at twenty-one, she would qualify for life-long adult services, as long as we lined up all our ducks before her eighteen birthday. Ironic indeed. “You never know what to wish for.” Nope.
Mon Dieu: Over the decades as we fumbled along the special needs highway toe-to-toe, heel-to-heel with families whose kids were each unique in strengths and weaknesses, I began to recognize how arbitrary these designations can be. The New York Times provided yet another article that underscores the mercurial nature of this process. A documentary on the treatment of Autism in France revealed that some mental health clinicians, specifically in the French psychoanalytic circle, treat Autism as a psychological trauma brought on by a cold and frigid mother. Mon Dieu! This notion, once sadly popular in the United States and similar in its horrific accusatory nature to the notion of the “schizophrenogenic mother” that reigned as recently as the 1970’s, apparently still has adherents in France. Rather than viewing Autism as a medical disorder that benefits from behavioral treatments and training, there are French children who have ended up as psychoanalytic patients to the point of being placed in an “asylum” for six years to undergo psychoanalysis. Frankly, as an American trained psychoanalyst, I find this fact particularly mortifying.
In other words, how a “condition” is viewed by the medical and mental health community determines the fate of the individual and history has shown how mercurial, judgmental and destructive that view can be.
Our Friends: Our daughter has many friends from her years at her special education boarding school Riverview whose diagnoses are on the Autism continuum, yet with I.Q.’s too high to qualify them for adult services. With the impending revision of the diagnostic categories that allowed these children services, fear is spiking that the current crop of children will not meet the newly revised DSM V qualifications for developmental services. Without these services, how will these children grow up to become successful adults in a social world?
Revision Sample: I have reviewed the DSM V revision sample online. Take a look. It seems pretty comprehensive and inclusive to me so please let me know if I am missing something.
Short Term Solutions Become Long Term Drains: There must be no doubt that providing the tools for successful adulthood, in childhood, is a benefit to all society. While still supported by their parents with shelter, food, clothing, transportation, medical services and love, children in public schools can be taught to socialize and communicate with their peers in their communities at far less cost to the government, the tax payer and society in general. If those same training tools were withheld, that would render the adult versions of these youngsters more likely to become burdens to the medical and legal institutions and places enormous stress on their families. And stress of that nature, research has shown, introduces additional costs to the medical and mental health arena as well as taking a big bite out of worker productivity. Short term cost cutting solutions, where human beings are involved, evolve into long-term drains for all.
Fingers Crossed: By the way, our intellectually disabled daughter just completed reading forty pages of “My Sister’s Keeper” in two days (“I like the movie better)…the Jodi Picoult novel for high schoolers and adults and will probably finish it off pretty soon. (Ms.Picoult is popular with women’s book clubs.) Does our daughter comprehend it? You bet, enough to know that the hot guy in the movie has not appeared in the book, so far. But can she pay a bill, safely cross the street, travel on her own or make critical decisions in an emergency? No. But she sure can read, thanks to years of special education services! Fingers crossed these precious special education resources will remain intact for the severe, the so-called mild, and all those in between whose success in adulthood depends on them. Fingers Crossed.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Oldies but Goodies: Our Child Is Gay; Hasidic; Autistic; Muslim; Bi-Polar; Asperger’s; Born Again: The Coupledom Adjusts
Jill will be back with a new daily post tomorrow, but for tonight, here’s another of her Oldies but Goodies.
Excerpt:
The Parenting Gamble: Whether you birth or adopt a child, genetically screen or take your chances, what you draw from the pile may please you, challenge you, overwhelm or revolt you in turn. The odds are that many parents/Coupledoms will become members of clubs that they never wished to join, and may be horrified to join; “The Parents Of ” Club. Perhaps the change happened early…
You can read the full post here:
Our Child Is Gay; Hasidic; Autistic; Muslim; Bi-Polar; Asperger’s; Born Again: The Coupledom Adjusts
The Parenting Gamble: Whether you birth or adopt a child, genetically screen or take your chances, what you draw from the pile may please you, challenge you, overwhelm or revolt you in turn. The odds are that many parents/Coupledoms will become members of clubs that they never wished to join, and may be horrified to join; “The Parents Of ” Club. Perhaps the change happened early, as in the diagnosis of autism, when the child is 2 or 3; perhaps in late adolescence, when sexual orientation, religious conversion, and mental illness emerge. Later still, when a child’s marital choice may include adopting a religion and lifestyle foreign to that in which they were raised.
Disclaimer: Let me be perfectly clear: I do not correlate sexual orientation with mental illness, nor religious conversion with developmental challenges. The commonality is the unexpected, unanticipated and difficult adjustment for the parents, and The Coupledom, (the domicile in which the relationship resides), when children of any age move “outside the box”, the expected, the acceptable, to what is unusual.
Shock and Fear: A pre-school teacher informs the parents that their child seems to be demonstrating some of the behaviors and characteristics of autism. A late teen shores up his courage to tell his family that he is gay. The telephone rings late at night and a family is told to come to the local hospital near their daughter’s college campus: she has had a psychotic break. A Jewish female eschews the teachings of reform Judaism for Hasidism, and withdraws into a world alien to her family. The only child of a Christian family falls in love with a Muslim man and decides to convert to Islam in order to marry him. In a nanosecond, the world of The Coupledom changes. Pow!
Stunned and Spinning: Catapulted into a new reality, the couple scrambles to make sense of the news that their child is “different”; Denial may be the first stop on the road to adaptation. No! Can’t Be! Just a stage, some drug reaction, a phase, a misdiagnosis, too early to tell, temporary brainwashing. Denial!
Blame: Next may come blame and guilt. Whose fault is this? The neighbors. The neighborhood. The school. The culture. The environment. The food. The toxins. The immunizations. This is a very tricky moment as here the couple may turn on each other. You weren’t, you didn’t, you did. Your genes; your screwed up teachings; your pressures on her/him. Or guilt: my pregnancy; my neglect; my over attention; my genes.
Anger As a Defense Against Pain: Flailing about trying to master the terror of the unknown, and a host of other emotions, couples often find themselves outraged. Perhaps the mom is furious and the dad accepting. Or vice versa. Often the anger, or angry disbelief is directed at the teenage or adult child if the parent perceives him or her as making a “choice”. For The Coupledom, the danger lies in a schism erupting between the parents because of differing reactions and perceptions of the situation. Old issues can be triggered by this trial and dumped into the bin to further toxify the exchanges. For the bond between parent and child, angry and accusative language or coldness and rejection, can cause temporary ruptures or permanent damage. The ice is thin here. Even the strongest of parental child bonds can be shaken and even shattered by these ruptures.
Fear: The underpinning of defenses such as denial, anger and blame is often fear. Deeply shaken and saddled with conventional notions of the “happy child” and the “happy life” and the “good family”, parents are besieged by images of their children being ostracized by an unkind society; vulnerable targets; staggering mental or cognitive impairments; going to hell; or of themselves ostracized by friends for the acts of their children; humiliated and stigmatized as defective adults; all of these images and more may assail the parents’ psyche.
The Child In The Midst: An ever-increasing occurrence in my practice is the appearance of a couple stricken by news that their young child is autistic, on the autism spectrum or has some form of processing challenge. Forced to join a “club” that they never imagined becoming a member of, the parents scramble to learn, train, and master the course in child rearing “difference”. It is excruciating at first for many parents and takes an enormous toll on the relationship. The mother is often in the trenches day after day, feeling misunderstood by the larger culture, whom she feels, judges her as incompetent, unable to “control”her child. The dad comes home to a wreck of a woman, shattered and tear-stained and begging for help or angry and ready to attack. In any case “it ain’t good for anybody”. The child in the midst of this tension and torment, can be viewed as both beloved and powerfully destructive. The Coupledom needs supplies of empathy and support rushed to them quickly.
Grieving Together: The common thread running throughout all these adjustments is loss.What you envisioned for your child, has shifted. No longer the “same” as you, following a different lifestyle, a different belief system; or no longer “normal” in societal eyes, or your eyes, having challenges that are visible and daunting; or alien and bewildering. Something is lost. And when we experience loss, we have to grieve to heal. Grieving for what you thought was the child’s future, the child’s perfection; the child’s life course. Grieving for the image of you, the perfect parent, the normal family. Grieving for what can’t be can lead to an openness for what can be. And grieving together as a couple can close some of the schism created by fear and pain.
Your Job: For the Coupledom whose child has chosen a different belief system or whose sexual orientation is different from your own, your primary job is to work on yourself, open up the box and expand your view of what is acceptable, forgive imperfections, and learn tolerance. Most important, do not fear difference. And when your child invites you into their world, join them, learn from them and grow. For those whose child is faced with cognitive and developmental challenges or mental illness, your job is more demanding: not only do you have the task of grieving but also of emboldening yourself to be your child’s advocate.
Foremost, find others faced with similar challenges, reduce the isolation! Do it as a couple as much as time allows. Then learn, not just what treatments and techniques are out there, but what are your child’s strengths, what can they build on, anchor them to the positive of who they are. Find a shared interest with them, so you can enjoy their company, be a part of their world. Celebrate their specialness and the specialness that is yours for celebrating them, for your courage and for your caring. And keep your eyes and ears open for new ideas and new treatments.
And most of all, be a team, a Coupledom that works together, shares information, and after the acute agony recedes, finds humor even in the midst of struggle. Let no one feel alone in this battle or the Coupledom will fall.
Liberation: And Guess What? There is something liberating when you eschew convention. Something that says, there is nothing intrinsically better about being like everyone else. There is nothing essentially superior. What is better and can be superior is courage, acceptance of the people you love and harnessing all the power in The Coupledom to unite in journeying forward to adjust to change, embrace challenge and be the best possible parent team that you can be, for your unique child.
My View: There is always an upside to the downside in life. Find it and share it in your Coupledom. In the struggle to make the adjustment to the new reality, seek out an expert to help you. This can be a tough one. As this wonderful video/movement suggests “It Gets Better”, even for the parents.
©Jill Edelman, M.S.W., L.C.S.W. 2010
