Westchester Guardian/Catherine Wilson.

Thursday, September 10, 2009

Catherine Wilson, Bureau Chief
Northern Westchester

Problems Facing Victims Of Autism

On August 5, Andy Spano announced that Westchester County was now “Autism Friendly” following the recommendations of an April 1, 2009 report from the Westchester County Autism Advisory Committee. According to this report, there are currently approximately 4,000 individuals
living with autism spectrum disorders (ASD) in the County.

The Committee defined autism as a “complex, neurobiological developmental disability”. They went on to indicate that its victims have “poorly
developed verbal and nonverbal communication skills, unusual speech patterns, limited interest in social interactions often leading to social
withdrawal. Individuals with autism often struggle to be flexible or tolerate even small changes in routines, experience sensory sensitivities, exhibit
repetitive or ritualistic behavior and often focus on objects rather than on people. It occurs in all racial, ethnic, and social groups and is four times
more likely to impact boys than girls. Symptoms can range from very mild to quite severe”.

The Committee made the following recommendations to the County:

• Declare Westchester County as an “Autism Friendly” County;
• Establish a Westchester County Autism Family Resource Center;
• Establish an Adult Advocacy Department;
• Establish a Special Liaison for Adult Autism Services;
• Develop a “How to” manual for businesses to employ adults who have Problems Facing Victims Of Autism ASD;
• Develop a post-secondary educational program for adults with ASD;
• Broker the establishment of a specialized medical/psychiatric treatment facility;
• Establish a Family and Service Provider Training Institute;
• Establish Autism Sensitivity Awareness Training for first-responders.

While the Committee is attempting to address the awareness of autism in our communities, even the experts do not properly address this disability.
School psychologists, counselors, and testing procedures are not geared to diagnosing milder forms of autism such as Asperser’s Syndrome. Parents
of such children are usually forced to initiate testing themselves. However, if a child is not properly diagnosed at an early age, by the time they are
adults they can become bipolar, develop eating and borderline personality disorders, and addictive behaviors. Early intervention is the key to helping victims of autism.

Children with mild forms of autism are often diagnosed as simply having behavioral problems. Early education programs such as day care and preschools do not have the resources to diagnose or address mild forms of ASD. Public elementary schools’ programs to identify and address the needs of an ASD child vary according to the financial resources of the school district.

Financial difficulties are affecting more than just the educational needs of ASD victims. Medical and treatment programs have recently been shut down due to government budget cuts or cutbacks in private funding. Few programs now exist for ASD patients who have developed eating disorder
problems. Private hospitals, such as Four Winds Medical Center in Katonah, have programs that address the problems of the autistic child but such programs are prohibitively expensive.

ASD children are often over medicated or given incorrect medications. Treatment programs to enable such children to develop coping skills are short-term and do not address long-term or future needs. The programs can cost as much as $30,000 for a mere 28 days.

However, there is no guarantee that a facility will accept an ASD patient; programs will refuse acceptance to patients who exhibit violent or extreme anti-social behavior. One parent told the Guardian that St. Vincent’s Hospital in Harrison mixes victims of all mental disorders together,
so that adult ASD patients exhibiting bipolar disorders will be together with eating disorder victims. According to this parent, St. Vincent’s does not offer separate break-out groups for specialized treatment, and no individual therapy for the patient.

As one parent noted, “The local hospitals only offer crisis intervention for adult patients with ASD. ere is no real therapy going on. The hospitals will only keep the patient for a short period, usually only 7 to 10 days, until the patient is “compliant”. As this parent told the Guardian, “‘Compliance’ is a big word. It means the patient will ‘tow the line’ and obey orders, especially when it comes time to sleep”. In order to make
patients “compliant”, many autism victims are overmedicated into submission.

Parents noted that when their autistic children return home from these “crises centers”, they exhibit withdrawal symptoms from the cocktail of medications they were exposed to while in the treatment facility.

Patients with mental issues are often grouped in many of these treatment programs according to gender, rather than cause. Autistic patients who have multiple hospital and treatment center admissions can become “hospital savvy”, they learn from each other. Autism does not always affect
intellect, especially in milder, higher functioning cases. Many patients are very intelligent and gifted.

There are autistic children who can play concert piano pieces by ear. One autistic child in upstate New York is a star basketball player and has mastered the repetitive motions of the sport like bouncing and dribbling. In environments where all patients with mental issues are grouped together, some autistic patients will learn from, or develop and mimic, the behavioral patterns of the other patients. An autistic adult entering a treatment program to develop social and coping skills can leave with knowledge of how to purge their food after witnessing the eating disorder
patients exhibiting this behavior.

Life with an autistic child is heartbreaking. As one mother told the Guardian, “You watch your child grow up never fitting in. All of the social
cues are missing. ere is no natural conversation banter. They do not laugh at jokes. An Autistic or Aspersers’ child will never comprehend the
banter. Even if the child has developed to the point that they can engage in simple conversations, you constantly have to explain yourself and reassure them that a remark was meant as a joke. They never quite get the social cues in life. As a child this can be hurtful. As an adult this can be devastating”.

This parent called for the County’s program to be expanded to educate the public as well as educators and first responders noting that adult
ASD victims are frequently hospitalized for depression and other problems simply because the public cannot understand them.

Autistic children and adults can exhibit mood swings; they can appear fine one minute and not so fine the next. ASD victims do not have coping
skills. If they develop sufficiently to be able to engage in society they also become aware that they are different and often experience depression.

Autistic victims with mild ASD often do not exhibit visible signs of a disability, which creates unique problems. According to one parent, “For a
disabled child to get sympathy, everything has to be visible, such as the use of a wheelchair, or they display ‘drama’”.

This mother spoke of how her child was never invited to a birthday party or a school event, even among the special education groups, noting that “the schools do not step in because they do not want to offend the other parents. My child has never had a friend in her entire life”.

Some autistic children can display incredible talents such as musical abilities, but those talents may not always be encouraged. One parent told the Guardian of how her child was selected for a highly regarded music revue every year in school due to her talent and how one mother objected that a “mentally retarded” child was selected to showcase the school.

As autistic children develop into adults, they need legal protection and an advocate for their rights and needs when their parents and caregivers die.
Sadly, none of the guardians or attorneys appointed by the courts, or even the judges themselves, are educated in the unique needs of an autistic child. One parent showed the Guardian a court order from the Westchester County Court that referred to her adult child as “mentally retarded”. As that parent informed the Guardian, “There is no sensitivity for these victims”.

A court-appointed guardian for one adult victim asked her parent, “She’s not mentally retarded, is she?” That same guardian dismissed a treatment
program in a legal document as a “class”, to which the parent replied, “Did he think she was getting college credit for this?”

Parents with autistic children are often forced to engage in legal battles to advocate the rights of their child in our schools, communities, and hospitals. But a parent battling a school psychologist or doctor in court will have to prove who has the best interests of the child at heart. The legal system will automatically appoint a legal guardian to represent the child’s interests.

But, as the Guardian has noted in prior articles on this subject, those guardians do not have any specialized training in autism and the unique needs of its victims. A parent fighting a school district over the use of medication to make their child more compliant in class will face handing this
decision over to a court-appointed attorney whose only qualification to analyze the issue is the amount he/she contributed to the judge’s campaign.

Once the parent caring for an autistic child dies, that child may be placed into a group home where patients with all mental disorders, including
criminals with violent personality disorders, are lumped together. Last May, a young staff counselor for Sunset House, a psychiatric group home
in Westchester County, was savagely beaten for hours by a resident convict, David Sanchez. According to the police reports, the victim was beaten so severely she suffered a fractured eye socket, a lost tooth, and a punctured eardrum. Yet it is into this environment that our most vulnerable individuals are placed on a routine basis when they no longer have anyone to advocate on their behalf.

Children who exhibit severe autistic symptoms receive treatment early on since their problems are easily recognized and diagnosed. But for those
children who have mild cases of autism, such as Asperser’s, they can be bounced around from treatment center to doctors to psychologists to counselors trying one treatment and medication after another until the correct diagnosis is finally reached. As one parent noted, “These children are pin cushions for the ‘experts’ to keep probing until something finally hits home”. Children with mild forms of autism may skate through their younger years with their young peers. But once those children reach their teenage years, social issues surface. These teenagers are usually ostracized by their peers and experience depression as a result, often attempting suicide.

When placed in a comfortable, secure environment, where they are surrounded by children like themselves, they do best. But once that security
is removed, and their environment is changed, they can immediately fall apart. One parent spoke of how her mildly autistic child attended a treatment program for several months but “fell to pieces” the first day she returned to school because of something someone said to her on the school bus.

The comment did not necessarily have to be a bullying or teasing remark. Autistic children are very “black and white”. They cannot comprehend
nuances or inflections. All local schools now have a “zero tolerance” for bullying and do not tolerate bullying towards disabled children. But
mildly autistic children who appear to function in school can still react to comments that other students, and even adults, would consider to be innocuous.

A simple question of “do you want to go to the concert?” can be interpreted by the autistic child as implying that they should not attend the event and can send their moods spiraling downwards.

Adult victims of autism may have depleted their families finances and no longer qualify for their medical coverage and will have to transfer to Medicaid to have their health needs handled. However, Medicaid is not equipped to handle the medical and treatment needs of the autistic adult.

As one local parent noted, “In order to qualify for Medicaid, you have to be living in the gutter. If the patient makes even $50 too much a month,
they will lose their Medicaid insurance”.

This parent’s child had thirteen hospitalizations in three years because Medicaid does not pay for any long-term treatment plan for the symptoms
that appear in adulthood. Medicaid will only cover short-term crisis intervention programs. Those programs do little to help an autistic adult develop the coping skills they will need to deal with society, let alone develop the skills they will need to adjust when their parents and guardians eventually die. “My daughter only got 15 minutes of therapy, twice a week, in the Medicaid programs. She was given up to fifteen pills a day instead to treat her problems” one parent said.

Adults with mental disorders such as autism face a stigma in our society. Many people still believe that someone with a mental disorder must be dangerous and violent. But as one sibling of a mentally-challenged individual noted, “There are far more dangerous people walking around in corporate offices and courtrooms who are far more capable of hurting huge numbers of people”.

To date, there is little understanding of what causes autism. All that is really known of this disorder is its symptoms which include:

• Extreme difficulty in learning language;
• Avoids eye contact, resists touch, and seems to tune out the world;
• Poor ability to play cooperatively with other children or to make friends;
• Inability to understand other people's feelings;
• Need for a rigid, highly structured routine and distressed by any changes;
• Extreme hyperactivity or unusual passivity;
• Repetitive body movements including pacing, rocking, or hitting oneself;
• Insensitivity to pain or lack of response to cold or heat;
• Impulsive behavior and no real fear of dangers;
• Unusual attachment to inanimate objects such as strings, or spinning toys;
• Frequent crying and tantrums for no apparent reason;
• Peculiar speech, using words without understanding the meanings;
• Abnormal responses to light, sound, and touch and may appear deaf;
• May be extremely distressed by everyday noises;
• Symptoms can change as the child grows older.

According to their report, the Westchester County Autism Advisory Committee members are the parents of children with ASD and all represent
a vast number of individuals and organizations that offer treatment, education, training advocacy and funding opportunities to the autism community.

The goal of this Committee is for ASD patients to “live as independent a life as possible” and they hope their recommendations will eliminate the
“missed opportunities of a fulfilling life for our citizens”.