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 autism
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
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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:
An Oblong Moon and Courage: 9-18-11
A Revelation of Relief: Driving home from Ridgefield after dropping our daughter off following the movie “The Help” I saw this oblong moon in the sky. It was formed by an unusual arrangement of clouds framing its intense orb. Folks clearly had their first Fall fires burning in fireplaces and the car registered 50 degrees Fahrenheit for the outside temp. It felt like Halloween and a rush of thoughts about holidays to come filled my pensive mind. Wow, this season would be very different from the previous five. Halloween was a great family favorite (though pockmarked with behaviors, resistance and disappointment as well) but during our daughter’s years at boarding school, the family piece went out of the picture. Instead parents weekend at Riverview School was a command performance that included an awesome Halloween dance but also a lot of focus on parent-teacher meetings and “efforting” to ensure that our daughter was getting the educational programming and socialization training that were the obsession and direction of those years. Now I felt a coating of relief over sore nerve endings: no more holiday multi-tasking. Not in that way. The girl lives in the next town and Halloween, Thanksgiving and Christmas won’t involve eight hour drives, motel stays, intense probes into “How are you being treated here?”, impressing teachers and dorm staff with her “needs”, the inevitable breakdown revealing what was not working and of course, the fear of what will happen when these boarding school years are over. Wow. I mean this. Wow, this particular revelation of change feels exhilarating.
Relief: I thought of Christmas, one day rather than a two-week stay. Of Thanksgiving, one meal rather than a ten-day race to get to dentists, doctors and later, case managers, probate office and visits with potential apartment-mates. So much work is behind us, behind me frankly. Whew. It can happen. It has happened.
A Reminder Provided by The New York Times: To underscore the pleasure in this nocturnal revelation was an article in the Sunday New York Times today on efforts of one family and a special education specialist from Montclair, New Jersey, to move a talented autistic young fellow from the cloistered world of “difference” towards the opportunities of adult productivity and independence, a journey full of hard work, cries for help, loads of obstacles and the muscle and backing of those few angels along the way who make all the difference. Inclusion has many critics but several themes stood out for me in this piece: familiarizing peers with “special” youngsters early in their school experiences makes for a safer journey for that child. I saw that with our child and with others. “Weird” kids don’t seem weird at all when you know them. And secondly that the world of employment is missing out on incredibly talented and dedicated workers when they dismiss the possibility of providing an opening in their work place for special needs teens and adults. (See this article on one Danish company utilizing the talents of autistic adults.)
The Help: Oddly enough, the movie “The Help” spoke to me of the same issue as the article on autism and our family journey parenting special needs, “Difference.” When is the world going to get over “difference?” When are we going to evolve into a species that relies on curiosity and empathy rather than fear and rejection? Whether it is skin color, brain function, or belief, what will it take to embrace rather than shirk? I know this is philosophy and I am not a philosopher. But my goodness. When? My favorite line in the movie occurred when the main character’s mother, a former president of her DAR chapter, said in a moving apology to her daughter for a heartbreaking cowardly act that underscored the evil of their 1960′s Mississippi racist culture, “…courage sometimes skips a generation.” Too many generations! Come on world, let’s get on board.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Needs Based Assessments and IQ: 4-26-11
A Significant and Subtle Difference: While on the campus of my daughter’s school Sunday I ran into a mom whom I have mentioned here previously. Her daughter has two more years at school before she “ages out” into the adult special needs community. It is increasingly clear to me that a seemingly innocent evaluation by DDS case managers of level of need becomes a determining and devilish document. Parents are asked to assess their children’s abilities in a host of areas, specific and concrete. But the answers are neither. Whether it is called PRAT as in Connecticut, or MASSCAP or some other acronym, beware.
Trick Question? As this mom mentioned, a simple question such as “Can your daughter get herself out of bed in the morning?” can be answered in so many ways. Yes, she can slide off the bed and walk out of her room and come downstairs. But does that mean that on her own, she will wake to an alarm, get cleaned up and dressed, eat her breakfast, and be ready for the day? On her own? Can she empty the dishwasher? Well yes, but when she dropped the glass and it shattered, she stood frozen and frightened, not knowing what to do.
The Devil Is in the Details: Another mom and I went over the difference between our children cooking an egg on the stove. Yes, she can make a scrambled egg, toast and juice. But if the pan flames up, or the paper towel catches fire, what then? Level of need, decision making ability, follow through, time management: be careful when answering these questions.
Worst Case Scenario: One always wants to think one’s child can do more than less. But optimal is not what is called for here. Worse case scenario is actually the better measurement to use when asked to assess your special needs child’s independent functioning capacity.
Falling Through the Cracks: Today, a mom told me that her son, whose IQ is 81, cannot receive any services beyond completion of schooling at age 22. His IQ is too high. Can he drive? Not any time soon. Can he make decisions that will keep him safe? Not any time soon. Where does this young man go for further support in the future? So far, nowhere. The system fails hosts of young adults because the IQ test, taken before the age of 18, does not measure true functioning in the real world, and sets a bar so cruel that it takes ones’ breath away (each state sets its own bar, give or take a few points here or there, 69, 70, splitting hairs to save bucks). This is a national outrage! Children in the Autism Spectrum frequently fall into this category.
Milk of Human Kindness? What a tough system. So start early and be super aggressive! Speak to everyone and learn the ropes because this bureaucracy is not known to have big buckets of the milk of human kindness on its shelves.
©Jill Edelman, M.S.W., L.C.S.W. 2011
