Four Seasons Pediatrics

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Autism – Finding Help

Finding Help with Autism and Autism Spectrum Disorder (AUTISTIC SPECTRUM DISORDER)

It is not surprising that many families are so overwhelmed by the diagnosis of autism, that they do not completely recall what they can do to help set priorities.  This article will help those families understand the resources available and how they can best help their child.

Resources/Organizations/Physicians Available:

Autism Speaks: This is the nation’s largest autism science and advocacy organization; dedicated to funding research, increasing awareness and advocating for the needs of persons with autism and their families.

Web site: www.autismspeaks.org.

Phone: Autism Response Team: 1-888-288-4762.

Email: familyservices@autismspeaks.org.

Helpful materials: Links to parents support groups, educational materials, videos.  Free downloadable 100 Day Kit is the definitive resource for families of children with newly diagnosed AUTISTIC SPECTRUM DISORDER

CDC- National Center on Birth Defects & Developmental Disabilities:  Aims to promote the health of children and adults and to enhance potential for full, productive living, through research, partnerships, prevention, and education

Web site: www.cdc.gov/ncbddd/autism

Phone: 1-800-232-4636

Email: cdcinfo@cdc.gov

Helpful materials:  Learn the signs, Act Early Campaign to educate parents about child development and the early warning signs of AUTISTIC SPECTRUM DISORDERs and encourage developmental screening and intervention.  Free resource for child-care professionals

Organization for Autism Research (OAR): Mission is to use applied science to answer questions that parents, families, persons with autism, teachers, and caregivers confront daily

Web site:  www.researchautism.org

Phone:  1-703-243-9710

Helpful materials:  Online publications: An Educators Guide to Autism for parents, teachers, and other professionals teaching a child with autism in the educational setting.  Parents Guide to Assessment

Autism Society of America:  The nation’s leading grassroots autism organization, with a strong chapter network that has spearheaded numerous pieces of state and local legislation, including the 2006 Combating Autism Act.

Web site:                                             www.autism-society.org

Albany Chapter: www.albanyautism.org

Phone:   1-800-328-8476

Helpful materials:  Online quarterly journal Autism Advocate, Annual national conference on autism, links to local chapters for families are particularly helpful

Future Horizons:  Aims to disseminate information about autism and Asperger’s syndrome through books and other media; has grown to be a world leader in publications and conference on AUTISTIC SPECTRUM DISORDERs.

Web site:  www.fhautism.com

Phone:  1-800-489-0727

Helpful materials:  Catalog of books, DVDs, and other materials for families, professionals, and children.  Online magazine Autism-Asperger’s Digest features practical strategies for meeting the real-life challenges of AUTISTIC SPECTRUM DISORDER.

Wrightslaw:  Leading web site for special education law and advocacy; publishes thousands of articles, cases, and free resources for parents, educators and advocates.

Web site:  www.wrightslaw.com

Helpful materials:  Online articles to help families understand the special education process.  Books, CDs/DVDs, digital media through Harbor House Law Press, Yellow Pages for kids provides contact information for local resources.

The National Academies Press:  Publishes reports from national institutions, offers free online access as a PDF read-and-print publication.

Web site: https://www.nap.edu/search/?term=autism

Helpful materials:  Educating Children with Autism – seminal publication outlines evidence-based educational interventions in children with Autistic Spectrum Disorder’s and identifies characteristics of programs that work

Interventions and Therapies:

Many interventions for children with Autistic Spectrum Disorder’s have been developed over the years; these have evolved from different philosophies.  It is important to understand the conceptual differences behind the various approaches.

Research-based interventions:  Most parents select one type of intensive intervention on the basis of their child’s needs and their parenting style.  The intensive interventions listed below require multiple hours of therapy per week and address behavioral, developmental, and educational goals.  Before choosing an intervention, investigate the claims of each therapy so that you understand the possible risks and benefits for your child.  Current evidence shows that no one program is superior to another.

Applied Behavioral Analysis (ABA): Uses behavioral principles to teach new skills and increase desirable behaviors.  Several other interventions such as DTT and PRT (below) are also based on ABA principles.  Families considering an ABA program for their child should seek a board-certified behavior analyst to ensure that the therapist has had adequate training and supervision. A video describing ABA is available at http://www.youtube.com/watch?v=iyCx-OLzgJw.  You may also find a board certified behavioral analyst in our area at www.bacb.com

Discrete Trial Training (DTT): This involves breaking down tasks into short, simple trials, with concrete instructions, and rewarding desire behavior and completion of tasks with tangible or external reinforcement.  This occurs in an environment with few distractions and a very small teacher to student ratio that does not promote the transfer of skills to more natural situations.  Thus, those who use this method must teach the child to perform skills in different settings, with different people, and different stimuli.  For information and resources, visit http://autismpdc.fpg.unc.edu/content/discrete-trial-training

Pivotal Response Training (PRT): This approach focuses on critical, pivotal behaviors that affect a wide range of human interactions and social situations.  PRT is used to teach language; decrease disruptive/self stimulatory behaviors; and increase social, communication, and academic skills.  Your child plays a crucial role in determining the activities and objects used in the PRT exchange, and skills are taught in a natural, contextual setting.  For a training video on PRT, visit http://www.autisminternetmodules.org/user_intro.php.  Please note, you will need to create a username and password in access the training materials.

Verbal Behavior (VB): The goal of VB is to increase functional language and appropriate social skills while decreasing stereotyped and problem behaviors.  A VB program focuses on helping a child realize that language will get him what he wants, when he wants it.  For an introduction to and more resources for VB, visit http://www.autismspeaks.org/treatment/verbal_therapy.php

Early Start Denver Model (ESDM): This developmental model of intervention is delivered in a classroom setting where all activities and therapies are conducted within a play situation.  It was recently combined with PRT to target children with Autistic Spectrum Disorder’s aged 1 to 3 years.  Information on this model is available at: http://www.autismspeaks.org/docs/d_200911_ESDM.pdf

Developmental Individual Difference Relationship (DIR)/Floortime Model: The parent or professional who applies this relationship-based approach follows the child’s lead and looks for opportunities to respond in a way that encourages expansion of a skill or interaction.  It is highly dependent on the skills of the parent or professional implementing the program.  For information and a video demonstration of this model, visit http://www.icdl.com/dirFloortime/overview/

 

Social Communication, Emotional Regulation, and Transactional Supports (SCERTS) Model: This educational approach provides specific guidelines for helping a child become a competent and confident social communicator while preventing problem behaviors that interfere with learning and the development of relationships.  The SCERTS model also provides educational and emotional support to families and aims to foster teamwork among professionals.  For a video describing this model, visit http://www.autismpodcast.org/?p=98

Training and Education of Autistic and Related Communication Handicapped Children (TEACCH): This is a special education program that teaches independence and developmental skills through a structured approach. An individualized plan is developed for each student on the basis of emerging skills in a highly structured environment, using visual supports to help the child easily predict and understand daily activities and respond in appropriate ways.  For a video describing this model, visit http://www.youtube.com/watch?v=ddGLJ2r4rcw

Complementary and Alternative Therapies (CAM):  Defining CAM is difficult, because the field is very broad and constantly changing. CAM is a group of diverse medical and health care systems, practices, and products that are not generally considered part of conventional medicine.  Conventional medicine (also called Western or allopathic medicine) is medicine as practiced by holders of M.D. (medical doctor) and D.O. (doctor of osteopathy) degrees and by allied health professionals, such as physical therapists, psychologists, and registered nurses. The boundaries between CAM and conventional medicine are not absolute, and specific CAM practices may, over time, become widely accepted.  You should be aware that Four Seasons Pediatrics and our doctors are not opposed to any therapies so long as they are:

  • Safe
  • Effective in controlled studies
  • Are not costly, especially if parents are paying out of pocket for therapies which have not been studied as part of a controlled trial

The providers at Four Seasons Pediatrics want you to understand that we feel some CAM therapies are expensive therapies with NO proven affects.  A physician who specializes in mercury toxicity; whose son was diagnosed with autism has written about his experiences with autism.  We feel that his views are a must read if you are considering CAM therapies.  His views can be found at: http://www.autism-watch.org/about/bio2.shtml  The therapies often found and described elsewhere include:

  • Nutritional
  • Immunomodulation
  • Biochemical/Metabolic
  • Detoxification
  • Sensory Integration Therapy
  • Music and Expressive Therapies
  • Additional Therapies

One of the most difficult issues with AUTISTIC SPECTRUM DISORDERs is that we do not have a straightforward medical therapy that is universally beneficial for children.  Often parents are frustrated with the lack of progress and therapies that they have tried.  Some complementary and alternative therapists offer therapies in the face of these issues and offer promise and hope, which is a powerful lure.   If any CAM therapy is proved to be beneficial we will be the first to promote it.  Bear in mind that our definition of benefit is based on our training of scientific and statistical benefit.   There are some CAM therapies that are of low cost and safe (e.g. Music and Expressive Therapy), and we would not dissuade parents from trying such a therapy.   We are more concerned with some of the other therapies which are costly and potentially harmful.

Early Intervention Programs and School Procedures:

Early Intervention and The Individuals with Disabilities Education Act:  The Individuals with Disabilities Education Act (IDEA) guarantees free and appropriate public education and provides protections for all children with disabilities from birth to age 21 years. Infants and toddlers from birth to three years with, or at risk for, disabilities are covered under the Early Intervention (EI) Program (Part C of IDEA). Because the EI Programs rules governing eligibility, coverage, and cost are different from state to state (for example, some are completely free, some have family cost sharing based on income), it is helpful to know the rules where you live. School services traditionally began when the child reaches the age of three years. Children with any autistic spectrum disorder are eligible under the special education category of autism. You may work with the school personnel as a team to form an Individualized Education Plan (IEP) and agree on what the appropriate education entails. This plan dictates services and placement, which then obligates the school district to cover the related costs. A parent guide that details the special education process is available at http://ed.gov/parents/needs/speced/iepguide/iepguide.pdf.

Autism Spectrum Disorder Services:

Speech and language therapy: Depending on the verbal aptitude of the child, the goal might be mastery of spoken language, use of signs or gestures to communicate, where the pragmatic (social) use of language. To find the speech language pathologist, contact the American Speech-Language-Hearing Association: www.asha.org

Augmentative communication: Any tool, strategy, or technology that compensates for, enhances, expands, or helps develop expressive intercepted communications skills; these range from gestures and signing to communication ports, speech-generating devices, and exchanged-based approaches (such as PECS).  For examples of AC devices, see the GoTalk Communication Device Series from Spectronics: www.spectronicsinoz.com/catalogue/gotalk-communication-device-series

Picture Exchange Communication System (PECS): PECS allows children with little or no verbal ability to communicate using pictures; PECS starts by teaching the child how to exchange a picture for an object. For a video demonstrating PECS, go to www.youtube.com/user/pentaburks#p/search/0eTzedhezar8 ; for a training module on PECS, to www.autisminternetmodules/org/mod_intro.php?mod_id=33  You will need to create a user name and password before viewing the training module

Occupational therapy (OT): OT can provide strategies for learning key tasks that can be practiced at home,, and in other settings; OT can also address sensory defensiveness, which is common in children with autistic spectrum disorder. For a podcast on the role of OT in children with autistic spectrum disorder, go to http://recordings.talkshoe.com/TC-29844/TS-203502.mp3

Social Stories: The goal of the Social Story is to share accurate social information in a patient and reassuring manner that is easily understood; it is usually written in the first-person in short, direct statements that target a particular skill to be mastered. For a video describing Social Stories, go to www.YouTube.com/watch?v=VOHqcz9gZqk.

Peer-mediated instruction (PMI): PMI aims to increase the social engagement of children within autistic spectrum disorder through semi structured interactions with typically developing peers. For a training module on PMI, go to www.autisminternetmodules.org/mod_intro.php?mod_id=13

Video modeling (VM): VM is used to teach desired behaviors in children with autistic spectrum disorders; either videotaped instruction of another person performing a desire behavior for videotaped models of the target child successfully perform desired behaviors (video self-modeling). For more information on VM, visit The National Professional Development Center on Autistic Spectrum Disorders web site: http://autismpdc.fpg.unc.edu/content/video-modeling.

Consider when to use Health Insurance:

School-based services for children with autistic spectrum disorders are usually not available all year round. Given the current financial constraints, relatively few children enrolled in school-based services are qualifying for extended school year programming. As your pediatrician, we can help families meet the National Academy of Sciences recommendation of all year programming, by writing a prescription for the necessary services. These include speech, occupational therapy, and behavioral therapy during school off times. Please bear in mind that it is not unusual for services to be denied on the basis that they are educational and not medical.  In addition, even when medically necessary, your benefits limitations may not allow some or all visits.  Occasionally a letter from us stating that it is medically necessary may be helpful to overcome these obstacles. For the current status of state autism insurance reform initiatives, visit the Autism Votes Web site (www.autismvotes.org) and click on State Initiatives.

Partner with educational institutions and research facilities:

While most communities have school interventions and community therapeutic providers, intensive research-based interventions, such as ABA, may not be available because of the lack of adequately trained providers or inadequate reimbursement through insurance programs. Some families may have to resort to fee-for-service practices which can be prohibitively expensive (ABA therapies can cost more than $40,000 per year). In such cases, consider checking with regional institutions such as the state University at Albany, for programs in psychology, education, and behavioral analysis. (see below)These often have graduate and doctoral students in training for many of these interventions and who can provide therapies as part of practicum, at a fraction of the cost, or as part of a research protocol that provides free access to usually unavailable therapies. Broader clinical and research networks such as the Autism Treatment Network  at www.autismspeaks.org/science/programs/atn, also help families enroll him in research protocols area.

Other local program links:

SUNY Albany: The Center for Autism and Related Disabilities at the University at Albany (CARD Albany) is a university – affiliated resource center that brings research and practice together in community settings. CARD Albany provides evidence-based training and support to families and professionals, and through ongoing research, contributes knowledge to the field of autism spectrum disorders

http://www.albany.edu/psy/autism/autism.html

College of St. Rose – has support groups and social skills training:

http://academic2.strose.edu/education/emery_center/socialskills.htm

Parent to Parent  – a family to family support group:

http://www.parenttoparentnys.org/Regional/cdresources.html

Bus Stop Club:  Any child, age 7-15, living in the Capital Region area of Upstate New York, who has a sibling suffering from a chronic illness or disability, is eligible to participate.  The program is FREE OF CHARGE:

http://www.busstopclub.com

ASPIRE, NY Inc:   ASPIRe N.Y., inc. is a non-profit organization providing community based recreation programming to teens and young adults with Autism Spectrum Disorders and other disorders of social relatedness.

http://www.aspireny.org/index.cfm

 

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