disease, diagnosis, direction autism:

story by | sandy smith

It was April of 2002 when Tyler was born and, like all parents, we paid careful attention to whether or not he was reaching his appropriate developmental milestones. Right on queue during the first year he was smiling, laughing, waving, crawling, walking and saying a few words. Our hopes and dreams for our precious boy seemed to be on track. That was until Tyler was fourteen months old and within a matter of weeks things changed dramatically. He lost his entire language vocabulary, became unresponsive to his name, stopped playing appropriately with toys, preferred to watch Sesame Street videos repeatedly and seemed to have lost some of his hearing. The uneasy feeling that something was not right began to consume me as I watched and compared him to other children his age. Armed with some knowledge of autism, I began digging deeper into the signs and symptoms from the research and as every day went by my concern only deepened.

After five long months of appointments, evaluations, and his pediatrician dismissals of signs of autism, Tyler, then nineteen months old, was diagnosed with an autism spectrum disorder called Pervasive Developmental Disorder. Our journey to understand autism, finding treatment for Tyler and help support other families of children with autism was just beginning.

what does autism mean?

Autism is a complex neurobiological disorder that typically appears during the first three years of a child’s life and lasts throughout their lifetime. It is part of a group of disorders known as Autism Spectrum Disorders [ASD] and it affects each individual differently and at varying degrees. The three main forms of ASD are Autism, Pervasive Developmental Disorder and Asperger Syndrome. Autism impairs a person’s ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines.

what does autism look like?

It’s important to remember that every child with autism is an individual with a unique personality and combination of characteristics. Common signs of ASD include: social skills

• Does not point or make meaningful gestures

• Does not respond to his or her name

• Has poor eye contact

• Seems not to hear at times

• Lack of interest in peer relationships

• Seems to prefer playing alone — retreats into his or her “own world”

Language

• Does not babble

• Lack of or delay in spoken language

• Loses previously acquired language

• Repeats words or phrases verbatim, but doesn’t understand how to use them

Behavior

• Performs repetitive movements, such as rocking, spinning or hand-flapping

• Insistence on sameness; resistance to change

• Develops specific routines or rituals

• Lack of spontaneous or make-believe play

• Excessively lines up toys or other objects

• Becomes fascinated by parts of an object, such as the spinning wheels of a toy car

• Tantrums

• May be unusually sensitive to light, sound and touch and yet oblivious to pain

• No real fears of danger how do you know? now what?

With no real medical tests for diagnosing autism, an in-depth observation of your child’s communication, behavior and developmental levels is the first step. Rely on family, teachers and other caregiver input and developmental history to help guide speculation. Persistence by parents is key to early diagnosis. It is not uncommon for pediatricians to initially dismiss signs of autism, telling parents their child will “catch up,” and may advise parents to take a “wait and see” approach. New research shows that when parents suspect something is wrong with their child, they are usually correct. Follow your instinct…don’t wait. Even if you or your family has not been directly affected by autism, it is part of our local classrooms and community. Educators, parents, and community members can have an impact by supporting autistic children, adults and their families.

When parents first learn their child is on the autism spectrum, feelings of devastation is very natural and though there is no known cause or cure, autism is treatable. Children do not “outgrow” autism, but studies show that early diagnosis and intervention lead to significantly improved outcomes. Gaining as much information as possible is critical to becoming an effective advocate for your child.

Among the many methods available for treatment of children with autism. Applied Behavior Analysis [ABA] has become widely accepted as an effective treatment. Mental Health: A Report of the Surgeon

General states, “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.”1 The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones.2,3 An effective treatment program usually includes behavioral therapy for 25– 40 hours per week that builds on the child’s interests, offers a predictable schedule, teaches tasks as a series of simple steps, actively engages the child’s attention in highly structured activities and provides regular praise and reinforcement of behavior. Children with autism also often benefit from speech, occupational and physical therapy in addition to a behavioral based early intervention program.

how does one grow?

1 Department of Health and Human Services. Mental Health: A Report of the Surgeon General. Rockville, MD: Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institute of Mental Health, 1999.

2 Lovaas OI. Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 1987; 55: 3-9.

3 McEachin JJ, Smith T, Lovaas OI. Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 1993; 97: 359-372.

First, the good news, depending on the severity and with the appropriate intervention your child may be able to live independently, earn a living and take care of their needs. Even those more affected will benefit from appropriate intervention and require less assistance as they reach adulthood. As with many on the spectrum, those with Asperger Syndrome often find the adolescent years to be emotionally difficult in ways they can’t understand. Social relationships may always be minefields, and as such, will continue to be a source of frustration and, for some, despair. As teens grow older, they’ll encounter more challenges romantically, though they may be able to relay their expertise and intellectual abilities into success in the workplace. Nevertheless, with the right mix of therapies and constant support from their friends and families, teens and adults with Asperger Syndrome are able to forge relationships with others on their own terms and carve a place of their own in the world.

Providing individualized treatment for children, adolescents and their parents for over 15 years, Dr. Fleissner specializes in:

“The best way where is help in my area?

• Infant Development Program [0 to 3 years] or Developmental Disabilities Services [3+ years]

Southeast Human Service Center in Fargo: 701.298.4500

• Clay County Early Intervention Services in Moorhead: 218.284.3800

• The North Dakota Autism Center Inc. : 701.277.8844 or ndautismcenter.org

Currently two programs for children with autism:

AuSome Kids Day Program

· Intensive 1:1 Early Intervention Program

• Support Groups and other resources in FM area: Red River Valley Asperger Network– www.rrvasperger.org

ND Chapter of the Autism Society of America–www.autismnd.org

• Public School District Special Education [3+ years]

Contact your local school district special education department

• For list of support groups and other resources across ND: ND Chapter of the Autism Society of America–www.autismnd.org

• Minnesota Help Me Grow early intervention program can help locate your local early intervention office or to request a referral: 866.693.4769

• Minnesota Children with Special Health Needs Information and Assistance Line at: 651.201.3650 or 1.800.728.5420 how is Tyler today?

A very healthy, happy seven year old little boy who not only has been receiving 15– 20 hours of behavioral therapy per week since the age of 26 months, but the center of our family’s world. Tyler attends public school in West Fargo and is currently enrolled at the North Dakota Autism Center, Inc. in Fargo after school and during the summer months working with his behavior therapists. Although not at grade level, Tyler can read and is an “AuSome” speller earning a 100% on every weekly spelling test he took during his first grade school year! That’s correct; Tyler will be starting his second grade year this fall.