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Special Autism Section

By Emily Puro

Our September 2009 issue contains an in-depth feature titled “Living With Autism” which focuses on the various treatments area families have employed to help their children on the autism spectrum. The following short articles are supplemental to that piece (all articles were written by Emily Puro):

Early Diagnosis = Early Intervention

With autism, as with any developmental delay, the earlier you identify the issue and begin addressing it, the better the long-term outcomes will be. As a parent, if you have concerns that your child’s development might be delayed, it’s important to seek help as soon as possible and continue seeking help until you get it.

Autism can be particularly confusing for parents because there is a difference between a medical diagnosis and an educational one, and some children meet the criteria for one but not the other. Still, a good place to begin is with your family pediatrician.

The American Academy of Pediatrics has published screening guidelines for autism and other developmental disorders and recommends all children be screened at their 18- and 24-month well child visits, according to Darryn Sikora, associate professor of pediatrics in the Autism Program at Oregon Health and Science University. Screening tools vary from provider to provider, she says, but there are four absolute indicators that a child should be evaluated for autism. Those indicators are:

  • • No babbling, pointing or gestures by 12 months
  • • No single words by 16 months
  • • No two-word phrases by 24 months
  • • Any loss of language or social skills at any age

      • If your child exhibits any of these delays or losses, he should be evaluated as soon as possible.

      Many parents opt to begin with an educational evaluation because a variety of early intervention treatments are offered through school districts and educational service districts. According to Marci Hammel, an autism specialist with the Columbia Regional Program, the educational assessment uses a team approach in which the child is evaluated in several developmental areas. The team then decides whether the child shows characteristics in four specific areas (impairment in communication; impairment in social interactions; repetitive patterns of behaviors, interests and activities; and difficulties with the sensory system) and if so, whether those characteristics affect the child’s ability to learn.

      Educational evaluations are available free of charge, typically from educational service districts (ESDs) but sometimes from your school district. To find out where your child should be evaluated, call the educational service district in your region. (See “Resources” for contact information.)

      If your ESD or school district deems your child eligible for autism services, various early intervention services will be provided free of charge depending on the child’s needs, resources available and the goals you develop together with early intervention specialists.

      “Be in tune with your child and the milestones your child is meeting,” says Emily Hoyt, a certified behavior analyst and co-founder of Building Bridges in Southeast Portland. “If you have any concerns, do more research and ask questions because some parents come to us later, around age 4 and say, ‘I knew something was wrong at 2 and I thought I’ll give it a year and then 3 came and I gave it another year and now I really regret waiting.’

      “If parents are concerned and the primary care physician dismisses those concerns,” says Sikora, “the parent should continue to push for answers.” Provide meaningful, specific examples to let your doctor know what your concerns are. If your pediatrician still dismisses your concerns, you can seek out a new pediatrician or go directly to your local early intervention program for an educational evaluation.

      “Parents know their children best,” says Sikora. “It may be that your concerns are not founded, but there’s no reason you should be denied the opportunity to have somebody evaluate your child if you have concerns.”

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      Navigating the School System

      While all children are legally entitled to a free and appropriate public education, services for children with special needs, including autism, differ widely from state to state, district to district, and school to school. As a parent of a special needs child, you need to educate yourself about special education laws and Individual Education Plans (IEPs), and be prepared to ask questions of your local school district to determine the most appropriate placement for your child.

      Genevieve Athens, Executive Director of the Autism Society of Oregon, recommends parents access the resources available through the Oregon Parent Training and Information Center (Oregon PTI; orpti.org), a nonprofit working to educate parents about special education laws and families’ rights and responsibilities. Athens encourages parents to start educating themselves early.

      “When their child is 3 and 4 years old,” she says, “parents need to be going to these free workshops that Oregon PTI is putting on about the IEP process. They shouldn’t wait until their child is in first grade to figure out what this IEP process is and how to advocate for their child correctly.”

      Many children on the spectrum thrive in mainstream schools with some level of assistance, while others do better in private school settings specifically designed to meet their needs. Building Bridges in Southeast Portland offers preschool, kindergarten and primary grade classes designed to meet the needs of children with autism, and the School of Autism in North Portland offers programs for preschool through grade 3. The Victory Academy opened this fall with services for children on the spectrum, including a full-day academic program with staff trained in many of the most popular behavioral therapy models and small class sizes of 8 students with at least 3 adults.

      While private programs can be costly, Victory Academy’s co-director Tricia Hasbrook is quick to point out that parents may be entitled to be reimbursed for private school tuition under certain circumstances. A June 2009 Supreme Court ruling (Forest Grove School District v. T.A.) gave parents the right to seek reimbursement through a due process hearing if they can establish that the school failed to provide a “Free Appropriate Public Education” as required by the Individuals with Disabilities Education Act. Parents should contact autism and special needs support groups and schools to learn more about how the Forest Grove School District case applies to their situation.

      Building Bridges: Full- and part-time classes for preschool through age 8; also home-based ABA therapy and social skills classes. 3533 SE Milwaukie; 503-235-3122; www.bridgespdx.com

      School of Autism: Preschool through 3rd grade. 7714 N Portsmouth; 503-283-9603; www.schoolofautism.com

      The Victory Academy: Starting fall 2009 with kindergarten through 3rd grade (4th and 5th will be added next year.) 5531 SW Natchez St., Tualatin; 503-784-9717; www.thevictoryacademy.com

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      It’s Not Just a Childhood Disorder

      While autism awareness has increased in recent years – and continues to increase – nearly all discussion on the topic revolves around children. “I want people to remember,” says Jonathan Chase, a 24-year-old with Asperger’s Syndrome who serves on the board of the Autism Society of Oregon, “their kids are going to grow up and be adults. Everything we talk about with autism is children and schools. How are we going to get a plan to get them through school? School is a very small part of your life. …I want people to plan long term.”

      But while Chase advises parents to think long term, he tells them to act short term, helping their children take small steps from an early age to develop the skills they’ll need to become as successful as possible as adults.

      “I was a smart kid,” he says. “I didn’t have to sit down and practice reading, …but when I got older I learned I had to practice talking to people. I had to practice shaking hands. So I look at those two skills at the same level. A normal kid knows how to shake hands but has to work on reading. An autistic kid might be really good at reading but they have to learn to shake somebody’s hand. They have to go out and practice it and study it and work at it and if they do, they can do it just like anyone else.”

      Parents “need to start small and start early,” he continues. “Your 10-year-old isn’t going to be ready to put on a suit and tie and go sit through a job interview, but you can start practicing wearing socks. You can start practicing wearing a different kind of clothing that you’re not totally comfortable with. You might have to start wearing it for 15 minutes every day, but if you start early, by the time he’s 18 he understands, ‘I can wear different clothes. I’m used to it. It’s not going to kill me.’ Then he can put on a tie and go to a job interview.”

      On the other hand, clinical social worker Lisa Lieberman reminds us there’s a balance between helping our children learn to live “normal” lives and causing them undue stress and pain in the process.

      “There are people who say, ‘Why should I put myself in a position of being in pain to meet other people’s expectations?’,” says Lieberman, whose adult son is on the spectrum. “Parents have to decide how much are you going to try to be pushing your child to fit in versus how much are you going to be trying to teach your child to speak up about the things that are really important that they can’t tolerate.”

      In any case, Chase believes parents need to be reminded there are adults with autism living successful lives. In the documentary On the Spectrum, he explains, “I still live at home. I don’t have a license or a credit card or an apartment and a girlfriend out there,” he says. “There are different levels of being functional in the real world. I can be an autistic person and struggle, but still survive in the real world.”

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      Understanding Your Autistic Child: Parent Education

      In addition to accessing specialists who work directly with children on the spectrum, says autism specialist and speech pathologist Anna Dvortcsak of Portland’s Dvortcsak Speech and Language Services, “it’s widely recommended that a mediated parent training approach be part of treatment for children with autism.”

      Parents are with their children all day, every day, says Dvortcsak, while specialists spend only hours a week with them. “If we can work with the parents,” she notes, “it can make a huge difference, it’s more cost effective and it has been shown to work.”

      Multnomah Educational Service District and the Columbia Regional Program both offer free parent education classes, some specifically targeting families with children on the spectrum. Many private organizations such as Dvortcsak’s offer parent training as well.

      Working with therapists at Building Bridges in Southeast Portland, Belinda Hanson learned how to incorporate the principles of Applied Behavioral Analysis into her every day interactions with her son, now 4. “He had a lot of aggression problems at 3,” she recalls, “biting, scratching, kicking, pushing other kids…. He would lunge at adults and bite them. (Building Bridges therapists) taught me different things to address because he was seeking attention. …They taught me how to redirect it and consequently he doesn’t do that anymore. They’ve helped me with some really life changing things.”

      It’s important for parents to become educated about the causes of their children’s actions, too.

      “Everything is processed differently,” says Jonathan Chase, a 24-year-old with Asperger’s Syndrome who serves on the board of the Autism Society of Oregon. “Most autistic people are very sensitive to touch. They have clothing issues. …It took years for me to learn to be comfortable wearing socks every day.”

      Chase is terrified of balloons, which he knows seems illogical to his neuro-typical peers. The reason for his phobia, however, is perfectly logical.

      “Sudden, loud noises cause me physical pain,” he explains. “It’s not just that I don’t like them. The external stimuli is processed differently for me than for a normal person. Sudden, loud noises are processed in my mind as physical pain.” When parents understand the causes underlying their children’s behaviors, he says, their home life becomes less stressful and they can help their children learn to cope with life’s challenges much more effectively.

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      Paying for Autism Treatment

      While some services are covered by the state, including some early intervention services for children from birth to 5 and educational services provided through public schools, many parents find it necessary to access private services and therapies to optimize outcomes for their children on the spectrum. Those services can be costly and health insurance might not cover them.

      “Treatment for autism in terms of insurance coverage is very inconsistent,” says Darryn Sikora, associate professor of pediatrics in the Autism Program at Oregon Health and Science University. “There is no mandated level of service in Oregon and there’s no insurance mandate in Oregon. The level of service that a child receives varies significantly based on who provides the insurance coverage, if they have it at all.” For autistic children who don’t have insurance coverage, she adds, some services are available through Medicaid.

      As autism awareness increases, many insurance companies are improving coverage for individuals on the spectrum. Some private corporations have begun offering benefits to help families access autism treatment services, too. “Intel Corporation recently added a provision that provides up to $30,000 a year for autism treatment,” says Sikora, “but that’s pretty deluxe.”

      Legislation has recently been introduced in both Oregon and Washington to require private health insurance companies to cover screening, diagnosis, testing and treatment of autism spectrum disorders through age 21, up to a maximum of $36,000 annually in Oregon (HB 3000) and $50,000 annually in Washington (SB 5203). Both bills were under consideration at press time.

      In the meantime, many parents work additional jobs, seek support from family, and live on extremely tight budgets in order to access the services their children need.

      “Even though it’s expensive,” says Tigard mom Belinda Hanson, whose 4-year-old son is on the spectrum, “I tell parents that are just coming into the community this is their college education. Do what you have to do now so that maybe one day they may be able to go on to college because otherwise they won’t.”

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      Is There a Cure for Autism?

      Just as every child with autism is unique, what constitutes a successful outcome is unique as well. With therapy, some children lose their autism diagnoses and no longer require services. Some never do.

      Because autism is basically “a set of behaviorally defined symptoms,” says Darryn Sikora, associate professor of pediatrics in the Autism Program at Oregon Health and Science University, “in my opinion, if the child has … enough of the symptoms to get a diagnosis at point A, they receive treatment at point B, and at point C they don’t have enough of those symptoms anymore, then they’re cured.”

      “We have worked with quite a few children who have lost their diagnosis or transitioned into mainstream classrooms without assistance,” adds Emily Hoyt, a certified behavioral analyst and co-founder of Building Bridges in Southeast Portland. “Many of those children have a few lingering issues, but nothing the casual observer would notice. For example, they might make a few articulation errors or have trouble with the complexities of playground politics. I’m not comfortable with the terms ‘cure,’ or ‘recover,’ but behavioral therapy can certainly improve the lives of children with (Autism Spectrum Disorder). Some of those children end up indistinguishable from their peers, and some do not.”

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      Autism Conference Oct. 29

      Wrightslaw Special Education Law And Advocacy Conference with Pete Wright, Thursday, Oct. 29, 2009, Ambridge Event Center 1333 NE Martin Luther King Blvd. This conference will focus on special education law, rights and responsibilities; tests and measurements to measure progress & regression; SMART IEPs; and an introduction to tactics & strategies for effective advocacy. Designed to meet the needs of parents, educators, health care providers, advocates and attorneys who represent children with disabilities regarding, this program is not disability specific. $35 registration for parent, $50 registration for both parents; $65 registration for professional. Registration includes continental breakfast, lunch, break snacks and two Books: Wrightslaw: Special Education Law, 2nd Edition and Wrightslaw: from Emotions to Advocacy, 2nd Edition.

      For more info or to register, visit www.oregonautism.com (click on Events)

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      Autism Resources

      General Information and Resources:

      Autism Society of America: Resources and information nationwide. www.autism-society.org

      Autism Research Institute: A wealth of information about autism research and treatment options. www.autism.com

      Autism Votes: Information and advocacy for autism insurance coverage. www.autismvotes.org

      Local Organizations and Resources:

      Autism Society of Oregon: Local chapter of the Autism Society of America. Information about local resources, support groups and more. 503-636-1676, www.oregonautism.com

      Autism Society of Washington: Local chapter of the Autism Society of America. Information about local resources, support groups and more. 888-279-4968, www.autismsocietyofwa.org

      Oregon Parent Training and Information Center: Parent training and information for families with special needs children. 503-581-8156, www.orpti.org

      Washington Autism Advocacy: Grassroots coalition advocating for positive change and legislation. www.washingtonautismadvocacy.org

      Portland Aspergers Network: Local resources, support and social groups (including West Linn Game Club). 503-226-5999, www.aspergersnet.org

      Autism Research & Resources of Oregon: Local organization working to create an autism center for individuals, families and professionals to improve the lives of people with autism. www.arroautism.org

      Autism Program at Oregon Health & Science University: Research studies, treatment services, care coordination and other resources. 503-494-8095,
      www.ohsu.edu/cdrc/clinical/portland/autism.html

      Columbia River Miracle League: Baseball league for children and adults with disabilities (based in Vancouver). www.columbiarivermiracleleague.org.

      The Artz Center (formerly Hearing and Speech Institute): Provides a variety of services for children with autism. 1675 SW Marlow Avenue, Suite 200,503-228-6479, www.artzcenter.org

      Dvortcsak Speech and Language Services: Behavioral and speech services provided in clients’ homes and in the community; parent training programs. 503-887-1130, www.dslsi.com

      Columbia River Miracle League: Vancouver-based little league serving children with special needs throughout the metro area. 360-518-4790, www.columbiarivermiracleleague.org

      Portland Autism Group. This local group of professionals includes naturopaths, speech language pathologists, counselors, psychologists, neurofeedback specialists, family therapists and more, all with a focus on autism. www.portlandautism.com

      D’Onofrio & Associates: Speech-language pathologists. 503-808-9919; www.donofrioslp.com

      Help Eliminate Learning Problems: 503-635-3389; www.helpadd.com

      A Hope for Autism: This organization focuses on connecting with children with autism and following their interests to provide learning opportunities that are personalized for each child. www.ahopeforautism.org

      Early Intervention and Assessment Services:

      Multnomah Educational Service District (ESD): 503-255-1841, www.mesd.k12.or.us

      Clackamas ESD: 503-675-4000, www.clackesd.k12.or.us

      Northwest Regional ESD (Clatsop, Columbia, Tillamook and Washington counties):
      503-614-1428, www.nwresd.k12.or.us

      Clark County, Wash., ESD: www.esd112.org

      For other Oregon counties, visit: www.osba.org/edlinks/esds.asp

      For other Washington State counties, visit: www.dshs.wa.gov/iteip

      Private Schools:

      Building Bridges: Full- and part-time classes for preschool through age 8; also home-based ABA therapy and social skills classes. 3533 SE Milwaukie; 503-235-3122; www.bridgespdx.com

      School of Autism: Preschool through 3rd grade. 7714 N Portsmouth; 503-283-9603; www.schoolofautism.com

      The Victory Academy: Starting fall 2009 with kindergarten through 3rd grade (4th and 5th will be added next year.) 5531 SW Natchez St., Tualatin; 503-784-9717; www.thevictoryacademy.com

      Yahoo Parent Support Groups:

      Oregon: health.groups.yahoo.com/group/autism-oregon

      Westside Portland Metro Area: health.groups.yahoo.com/group/WestsideAutismMoms

      Vancouver, Wash.:health.groups.yahoo.com/group/autism_wa_vctc

      Local Research Programs:

      Autism Program at Oregon Health & Science University: Ongoing studies seeking local participants. 503-494-0333, www.ohsu.edu/cdrc/clinical/portland/autism.html

      Autism Center at the University of Washington: Ongoing studies seeking participants. 800-994-9701, depts.washington.edu/uwautism/

      Autism Spectrum Disorders Outcome Study And Training Project at Portland State University: Information on project outcomes. 503-725-5207, www.autismstudy.pdx.edu

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