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Jamal and his autism, 11 years
later
February 15, 2007
By Jeffrey Wolf
 KUSA
- The video shows a 21-year-old man throwing himself against a plexi-glass
protector in the moving car. He is hitting himself hard, and opening
and closing the car door while the car is moving. The plexi-glass is
to protect his mother from him. Other video shows him hitting
himself and her in their home.
That was Jamal Shaikhly 11 years
ago. Four days after a 9Wants to Know story aired in 1996, Jamal was
put into a residential treatment facility.
His mother, Marsha, had contacted
us before he was able to get into the facility for help for herself
and her son. Before contacting 9NEWS, facilities had told her he may
be on a waiting list for 14 years before he would be placed.
Eleven years later, Jamal is 32
years old. He is crippled from rheumatoid arthritis, but the
structured daily routine and 24-hour care at the facility has made a
difference and given hope to his mother. His current prognosis is
for 24-hour care for the rest of his life. Because his physical
condition is fragile and 24-hour care is available to him, he is in
the best place for him and his mother. His mother tells us that even
before the arthritis developed, Jamal was much calmer, able to
interact more, and “not going backwards” in his behavior.
“The best treatment for autism is
when the diagnosis happens early,” said John Miles of the Division
of Developmental Disability, which is part of the State Department
of Human Services.
Jamal was diagnosed when he was 3
years old and then again when he was 5 years old. Still, the
condition progressed until his mother decided he needed state
residential treatment.
Autism is a neurological disorder
whose cause is not known. According to a new study, one in 150
American children are diagnosed with autism. The new numbers come
from the Centers for Disease Control and Prevention. It means that
approximately 50,000 more children and young adults may have autism
or other related disorders than was originally believed. Those
involved in the study say it’s unclear whether the new numbers are
because autism is increasing or has not been previously diagnosed
properly.
In Colorado, programs for children
with autism and other developmental disabilities are grouped by age.
Funding for developmentally disabled children, including those with
autism, under the age of 5, comes from the State of Colorado. There
are a variety of programs including early intervention services for
infants and toddlers, up to 3 years of age.
There are also specifically, autism
waivers that can be given from birth to age 6. The autism waiver is
Medicaid funded and is a program that is specifically designed to
meet the needs of children with a medical diagnosis of autism. It
provides very intensive focused therapy, in the early years that
provide a long-term benefit for the child.
In Jamal’s case, these programs
were not available.
There are also special education
programs in public schools in Colorado for children with autism, as
well as other children with developmental disabilities, that begin
at age 3. These provide services such as speech and occupational
therapy, and behavioral services, as well as special education. What
services are provided depends on the individual child’s disabilities
which can differ greatly. Special education under public education
can continue until the age of 21.
Under the age of 18, there are
foster care placements through the county Departments of Colorado
Human Services. Those are rarely used for children with autism, but
are for those with families whose children are having the most
difficulty and the families are not able to cope with the
challenges. Beginning at the age of 18, there are adult services
that are provided in a family home or in smaller one or two person
settings or in group settings. However, there are waiting lists for
adult services through the developmental disabilities system. Ninety
six percent of adult developmental disabilities services are
provided in community settings.
In the case of Jamal, because of
the severity of his needs, he is being cared for through the state
operated services.
Depending on the income of the
family, Supplemental Security income can be available for those
under 18. At age 18, only the income of a person with development
disabilities is considered.
If you’re a parent of a child with
developmental disabilities, including autism, you should be in touch
with your local community center board and you can find that through
www.cdhs.state.co.us/ddd. Click on
the tab for Community Centered Boards (CCB).
You should also be in touch with
your local school district for public education or the Autism
Society of Colorado, which is an advocacy organization. You can
learn more by visiting
www.autismcolorado.org. You can
also call them at 720-214-0794 or toll free at 1-866-733-0794.
Most cases of people with autism
are not as difficult as Jamal’s because he has other complicating
factors.
Autism is a brain disorder that
affects a person’s ability to communicate, to reason and to interact
with others.
There is no cure for autism, but it
has been well documented that early intervention leads to
improvements in behavior, development of functional skills,
communication and IQ.
Adults with autism benefit from
employment and vocational training, as well as social and
recreational opportunities.
Signs for recognizing autism
include:
• Failure to respond to his/her
name
• Cannot tell what he/she wants
• Appear deaf at times
• Does not smile socially
• Is very independent
• Is not interested in other
children
• Has tantrums
• Is hyperactive or uncooperative
• Gets stuck on things
• No babbling/gesturing, pointing
by 12 months of age
• No single words by 16 months
The Arc of Colorado also helps
people who have a developmental disability, including autism, mental
retardation, Cerebral Palsy, Down Syndrome, epilepsy and other
neurological conditions. To find an Arc Unit in your area, go to
www.thearcofco.org.
Access to services for individuals
with developmental disabilities in Colorado is obtained through
local community centered boards, overseen by the Division for
Developmental Disabilities (DDD), Colorado Department of Human
Services. These agencies, which determine eligibility for services,
work with the family and/or individual to secure appropriate
services. There is an extensive waiting list for services in most
counties.
The Wheat Ridge Regional Center,
and the other two state-operated facilities in Grand Junction and
Pueblo, receives referrals for service through the community
centered boards.
The Web site of the Colorado
Department of Human Services, Adult Disability and Rehabilitation
Services, Division of Developmental Disabilities describes the
service system in Colorado and has a listing of community centered
board resources. You can visit their site at
http://www.cdhs.state.co.us/ddd/.
To learn more watch 9NEWS at 10
p.m. Thursday to see Paula Woodward's piece on Jamal.
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