Autism: Pork Roast & Dayenu

[Ed. Note: Today's post is from Jennifer Simon, M.A. Ms. Simon is the former Coordinator of Academic Programs for Student Athletes, New Mexico State University and a reader of Health Reform Watch.]

Dayenu.

There is a call and response performed on Passover. Each thing the Lord did for the Jews in the long story of Exodus is recited in turn. After each one, we say, “Dayenu!” “It is enough!” We praise what we have been given. Sometimes the word is also used casually and ironically to mean, “Enough, already!”

Autism rates have skyrocketed in the last few decades; the curve is steep. Some experts believe the numbers reflect nothing more than heightened awareness. Other experts, along with puzzled doctors, worried governments, horrified teachers and anguished parents, are casting about for causes and cures. Nobody has any answers, although theories abound. I have my own theories, but all I can know with any certainty is reduced to my own experience with my son.

Autism is not merely a disability; it is another world. What we sense and how we think forms our understanding and expectations of ourselves, others and our surroundings. People with autism who are verbal describe fundamentally different, often overwhelming sensations and ways of thinking; our behavior is as much a puzzle to them as theirs is to us.

All the experts agree that early intervention is crucial. They admit that in most cases our children will still be autistic, but they will be higher-functioning. That means they will be less atypical; they will conform more closely to common expectations, which is the path to independence. We do not want them to have to depend on the kindness of strangers. For his own sake, and at whatever cost to his own truths, I am instructed to round the corners of my son’s mind to make him fit in an uncomprehending world.

My first exposure to the world of autism came in the form of a news feature on television. This must have been almost twenty years ago, back when I was married to a man who didn’t want children. As I watched, I consoled myself with the thought that at least I would be spared the fate of these parents, who could not communicate with their children through touch or word.

Many years, one divorce, another marriage, and two children later, my son was diagnosed with severe autism. It turns out that I can communicate with him, and he with me, through touch and word. He is my cuddly, affectionate boy, nothing like the children I saw on television. Except that he makes some of the same sounds and moves. Except that he, too, lives in his own little world.

He doesn’t talk like other five-year-olds, except for some of the autistic ones. He doesn’t sleep like other five-year-olds, except for some of the autistic ones. He makes beautiful murals in ketchup on the kitchen floor at three in the morning when I inadvertently doze off in the chair. I sleep in snatches, a few hours here, a few hours there, always interrupted. All my dreams are unfinished.

An old family friend told me that when he first joined the department where my father taught, my parents invited him for dinner. He’d known very few Jews, but he had enough general knowledge to be surprised when my mother brought a pork roast to the table. His expression must have revealed his confusion. He said she glanced at him, smiled blithely, and said, “You may find we do things a bit differently here, and we love it!” I cling to the notion, bred in my bones, that difference is lovable.

My son is so arrestingly beautiful that people sometimes stare. At story hour in the library, the woman in charge was enchanted with him, ignoring the other toddlers as she tried to engage his wide, deep-brown gaze. His eyes met hers briefly in a shy smile and then slid away to an abstracted distance, even when she called him by name.

He slithered off his chair as she read, lying sprawled on his back, looking up at the dazzle of fluorescent lighting and then at the little girl next to him. He gently stroked her hand. She grinned at him but had business elsewhere, animal pictures to identify and projects to complete. My son wandered off, making his funny little noises, repeating expressive but incomprehensible phrases and humming, pressing his cheeks to the shelves to sight along their lines.

I watched the other parents’ interested admiration and friendly we’re-all-in-this-together nods turn uncertain. Their glances slidaway, almost autistically avoidant. Some obsessively attended to their children. A few, unconsciously defensive, interposed their bodies between my child and theirs as we searched for a seat at the activity table. I tried to smile blithely.

My son had a pleasant outing, knowing nothing of the sensations he had created. We went home to play and soak in the sun. It took hours of light and distraction to wash away the taste of bile in my mouth. He climbed in my lap, and we invented yet more silly games involving lots of kisses and giggles. He is so very different and so very lovable and so happy in his world.

My friends like to play at contracting marriages between their children. It’s great fun, a harmless fantastical way of praising one another and showing love, but I’m silent when the conversation takes that turn. I applaud as they proudly recount their children’s displays of developmental genius, all the accomplishments of early childhood reinforcing their expectations for college educations and brilliant careers, but I also wince internally. I don’t know what to expect.

I never feared the future before; it seemed wide-open. Now I cannot see round the corners where walls of fatigue and worry meet. Undistracted by distant visions, I am learning to see where I am, to be here now instead of taking the here-and-now as a path to somewhere else. My son’s beauty and kisses and giggles, his artlessness and his art, and the strange world he shares with me are present blessings.

It must be enough. It is enough. Dayenu.

An Autism Diagnosis: Key to Unlocking Needed Services?

photo by stevendepolo via flickr

Michael Poreda’s excellent post yesterday called attention to what looks to be a fascinating panel discussion — “Serving Urban Students With Autism: Newark, New Jersey” — to be held here at Seton Hall Law on April 5th.  Michael interviewed Leslie Long and Michele Adubato — Adubato will be speaking on the panel — of Newark’s North Ward Center which plans a 2011 launch of a new initiative to better serve individuals living with autism in Newark.

In his post, Michael writes that he “wanted to know if students with autism in Newark were getting the same services as students elsewhere in the New Jersey, and if not, whether law or policy played a role in the disparity.”  He goes on to highlight a number of areas of potential disparity between Newark and New Jersey’s suburbs and towns, all disturbing.

I was particularly troubled by Michael’s report that the Newark schools’ wait-and-see approach to diagnosing children with autism leads to children from birth to age three being denied (or simply not accessing) early intervention services.  There is nothing wrong in theory with waiting and seeing with regard to diagnosing an infant or toddler with autism.  I believe the choice to wait-and-see is one that parents should be free to make in consultation with their baby or child’s healthcare providers.  That choice is in no way free if advocating for and/or accepting an autism diagnosis is the key to accessing needed services.  (My previous post on the pressure parents can face to accept the diagnosis is here.)

In my opinion, early intervention services should never be linked to a diagnosis; they should always be based on the demonstrated needs of the individual child.  A key takeway from the dispute over the inclusion of Asperger’s Disease in the DSM-V is that while diagnoses of mental disorders can no doubt be useful in certain contexts, they are also mutable and political, describing and potentially shaping a complicated reality.  They seem a shaky basis for divvying up scarce educational resources amongst very young children.

In New Jersey children do not, legally, need to be diagnosed with autism — or any other   -ism — to access early intervention services.  A child with an autism diagnosis is presumptively eligible for early intervention services, but that same child could also qualify without the diagnosis, based only on his or her individual developmental delays.  After a child turns 3 and is no longer eligible for early intervention, a diagnosis is still not (supposed) to be the key to services.  In New Jersey, a child between the ages of 3 and 5 with developmental delays can qualify for special education as a “preschooler with a disability.”  N.J.A.C. 6A:14-3.5(c)(10).  I wonder whether the use of these avenues to accessing services is more common in the New Jersey suburbs than in Newark– and whether this is yet another disparity.

Serving Urban Students With Autism: Newark, New Jersey

[Ed. note: We are pleased to welcome to the blog Michael Poreda, a 3^rd year student here at Seton Hall Law and the  Executive Director of its Urban Education Law and Policy Initiative (UELPI)--a student organization formed to promote awareness of, dialogue about, and activism benefiting urban education.  On April 5, 2010, UELPI will be convening a panel to discuss the challenges of administering special services to students with autism in urban communities.]

I recently sat down with Leslie Long and Michele Adubato of Newark’s North Ward Center to discuss the issue of autism services in Newark.  Founded in 1970, the North Ward Center is a non-profit community development organization that delivers social services to low-income families in Newark and Essex County through five institutions.  In 2011, the Autism Center will become the sixth institution.  The Autism Center will be headed by Michele Adubato, a former special education teacher and school administrator who has worked with children with autism for many years.   Leslie Long comes from a background of public policy.  She has directed programs for people with developmental disabilities throughout New Jersey.

I went to speak with Adubato and Long after finding that New Jersey has the highest autism rates in the country, yet the reported rates of autism in Essex County are lower than in surrounding communities and lower than the state average.[1] I wanted to know if students with autism in Newark were getting the same services as students elsewhere in the New Jersey, and if not, whether law or policy played a role in the disparity.

Adubato is disturbed by the Newark school system’s proclivity not to diagnose children with autism because of a policy against stigmatization.  Adubato says the key with autism is early intervention.  The stigma-avoiding “wait-and-see” approach that the Newark school system often takes with children exhibiting autism-like behaviors avoids early intervention.

The problems facing children with autism in Newark are many.  At basic level, many parents are simply unaware of the symptoms of autism, the services available, the prognoses, or their rights.  Even when a parent is concerned about a child’s development, the parent may find the public schools resist diagnosis and the entitlement to special services that comes with the diagnosis.  Furthermore, in Adubato’s experience, the schools in Newark are not delivering the same caliber of services that are delivered in some suburban schools.  Even if a parent does get a diagnosis and some services, parents are unaware of their legal rights concerning the schools system’s proposed special education plan for the disabled student.  It is common for schools to select achievement goals for students with autism that do not actually address the most pressing issues of self-expression.  Parents are often unaware that they have a right to refuse the school’s proposed Individualized Education Plan (IEP) and to demand what they deem an appropriate IEP.

The transition into adulthood poses another major legal problem for students with autism.  Special services are only available through the school system up to age twenty-one.  Afterwards, the state administers services to people with autism through the Department of Developmental Disabilities (DDD).  Getting an approval for services can be downright treacherous.  Ms. Adubato related one frustrating story of a grandmother who was told that her autistic grandson needed to write his own application for special services.  DDD then used the grandson’s ability to write an application for special services as evidence that he wasn’t entitled to special services.

When it is inaugurated, the Autism Center will become a “one stop shop” for people with autism.  It will be a charter school for children with autism and provide parents with legal guidance for navigating the confusing bureaucratic world of special services.

On April 5, 2010 at 4pm, UELPI will host “Serving Urban Students With Autism: Newark, New Jersey,” a panel discussion at Seton Hall University School of Law.  We plan to bring together an educator, a parent, a lawmaker, a lawyer, and a member of an urban board of education to discuss the challenges of delivering services to students with autism in urban communities.  Kim Williams will share the challenges she faced as the parent of a student (now an adult) with autism who passed through the Newark public schools.  Michele Adubato will discuss why she left Newark schools after years of service there to found a special autism charter school.  Assemblywoman Grace Spencer will comment on the state’s recent efforts to help people with autism, and Attorney Paul Prior will share his perspective on the legal issues facing students with autism.  Suzanne Mack, a long-time member of the Jersey City Board of Education and the parent of an autistic child, will discuss her perspectives on building a large urban autism program.  The panel is tailored to meet the interests of a diverse audience: students, educators, parents, and lawyers all stand to gain important insights from this dialogue.

Be heard. All are welcome to attend, free of charge; reception to follow. Seton Hall Law University School of Law, One Newark Center, Newark, NJ 07102. RSVP at Urbaneducationandpolicy@gmail.com

Autism, Autistic-Like, and Health Insurance Reform

In his post Implementing Reform: Children with Special Health Care Needs, Professor John Jacobi notes that providing “health insurance” to children with special health care needs (”CSHCN”) does not ensure that their needs will be met.  Many private health insurance plans do not cover services such as occupational, physical, or speech therapy for CSHCN.  Private plans frequently limit coverage for such therapies to otherwise healthy children who need therapy to facilitate their recovery from an illness or injury.

Through their power to regulate insurance, states can require private plans to extend coverage for needed therapies to CSHCN.  For example, in legislation passed earlier this year, New Jersey became one of an estimated 15 states to specifically require insurers to provide treatment for individuals with autism.  Children with autism have benefited from a wave of recent legislation — 8 states enacted laws related to autism and insurance coverage in 2009 alone.  Children with other special needs have been largely left behind.  Many go without services; others may be shoehorned into an inappropriate autism diagnosis.  A recent documentary, Autistic-Like, tells the story of parents pressured to accept an autism diagnosis in order to access state-funded services for their son.  While New Jersey’s autism mandate is admirably broad, requiring private insurers to cover occupational, physical, and speech therapy for individuals with “autism or another developmental disability,” other states’ mandates are strictly limited to children on the autism spectrum.

Insurance mandates are attractive to legislators because they are off budget.  They are not, however, without cost.  The Council for Affordable Health Insurance, an insurance industry association, estimates that “an autism mandate increases the cost of health insurance by about 1 percent.”  Mandates like New Jersey’s, which extends beyond autism, could lead to even greater cost increases.  Piecemeal reform that privileges some special needs over others has costs of its own, however, not the least of which are borne by children living with labels that do not fit.