My child might have autism. What should I do?
Autism Fast Start Checklist
This checklist was created to help parents who are concerned that their child is exhibiting signs of an Autism Spectrum Disorder (ASD). It gives parents a ‘fast start’ in learning how to obtain support through the evaluation and initial treatment process and is not intended to be all-inclusive. Work with your physician, service providers, and other knowledgeable people to determine the best route for your family. Don’t worry about trying to do everything on this list all at once. You know your family’s capabilities best and you should try only those interventions and treatments that make sense to your family.
DISCLAIMER: The information contained in this checklist should not be construed as medical advice. Please consult a professional to help guide you in your decision-making process.
- Read information regarding how to detect first signs of possible autism spectrum disorders. A comprehensive review is found on the Center for Disease Control (CDC) website at http://www.cdc.gov/ncbddd/actearly/index.html
- Learn about early signs of autism and other autism treatments by watching video examples in the video glossary part of the Autism Navigator. http://autismnavigator.com/
- Ask your pediatrician about developmental screening. The American Academy of Pediatrics recommends that children be screened for general development at 9, 18, and 24 or 30 months and for autism at 18 and 24 months, or whenever a parent or provider has a concern.
If your child is 2 years old or younger:
- Complete a developmental screener such as the Ages and Stages Questionnaire and share the completed questionnaire and results with your child’s pediatrician. The Ages and Stages Questionnaire is available for free online and can be found at http://es.easterseals.com/site/PageNavigator/ntlc10_mffc_homepageasq.html
- If your child is between 16-30 months of age, you can complete the Modified- Checklist for Autism in Toddlers (M-CHAT) and review the results with your pediatrician. The M-CHAT is available for free online and can be found at: https://www.autismspeaks.org/what-autism/diagnosis/mchat
Contact your local Early Intervention Agency for an evaluation (www.utahbabywatch.org). These agencies are government-funded and serve all eligible infants and toddlers who have developmental delays and/or disabilities. They conduct a wide variety of tests to determine the strengths and challenges the child is experiencing, then, if the child qualifies, the team develops an Individualized Family Service Plan (IFSP), which guides service delivery. The team may also refer you to a child psychologist, psychiatrist, neurologist, or other medical professional for a diagnostic evaluation.
If your child is 3-4 years old:
- Contact your local Early Childhood Special Education program through your local school district. Each school district has a program for preschoolers with developmental delays or disabilities (ages 3-5). A team of Early Childhood Special Education professionals will work with you to evaluate your child’s development and determine whether he/she is eligible for a Free and Appropriate Public Education under the Individuals with Disabilities Education Improvement Act (early childhood special education and/or related services). If your child is eligible for services, the team will work with you to develop an Individualized Education Program (IEP) that will determine what services your child will receive. The team may also refer you to a child psychologist, psychiatrist, neurologist, or other medical professional for a diagnostic evaluation.
If your child is 5 years or older:
- Contact your local school district, which will have a program for students with disabilities ages 5-22. A multidisciplinary team of professionals will work with you to evaluate your child’s strengths and weaknesses and determine whether he/she is eligible for a free and appropriate public education under the Individuals with Disabilities Education Improvement Act (special education and/or related services). This team will not provide a diagnosis; they will provide an “educational classification” of autism for those who meet the educational definition, whose autism negatively impacts education, and who require specialized instruction. The team may also refer you to a child psychologist, psychiatrist, neurologist, or other medical professional for a diagnostic evaluation.
Evaluation and Treatment
- Obtain diagnostic testing and/or assessment. Make an appointment to see a child psychologist, psychiatrist, neurologist, or other medical professional who specializes in diagnosing children with Autism Spectrum Disorders. This may be the physician that your local early intervention, early childhood, or special education program has referred you to, or it may be a physician referred by a friend, family member, or another parent of a child with ASD. These assessment services may be provided by private or government-funded professionals (e.g., The Developmental Assessment Center http://healthcare.utah.edu/pediatrics/services/udac/ ; Valley Mental Health vmh.com; Wasatch Mental Health www.wasatch.org). For a list of several diagnosticians in Utah, visit http://www.uvu.edu/autism/resources/parent.html .
- Visit the Utah MedHome Portal at http://www.medicalhomeportal.org to access detailed information about the diagnostic process and other resources. Along with testing for the symptoms of an Autism Spectrum Disorder, the diagnostic testing should include:
- Social skills assessment
- Communication assessment (receptive/expressive language and social language)
- Adaptive behavior assessment
- Hearing screening
- Occupational therapy evaluation (fine/small motor skills)
- Physical therapy evaluation (gross/large motor skills)
- Full neurodevelopmental evaluation, including testing to rule out genetic disorders such as Fragile X or Rett’s Syndrome (this option is expensive and sometimes not covered by insurance, but can provide valuable information).
- If your child is diagnosed with an Autism Spectrum Disorder, obtain a 100-Day Kit from Autism Speaks, which includes basic information about ASD and dealing with the news of a diagnosis. The personalized kit lists local service providers, support groups, recreational activities, sources of legal information, conferences, local autism and disability organizations and information about the local chapter of Autism Speaks. It provides insight into getting services for a newly diagnosed child and explains various available treatment options. A week-by-week action plan helps walk a family through the steps it needs to take to ensure that it is on the right track. The kit also includes a glossary of terms associated with ASD, as well as a safety plan and a list of recommended books and websites. https://www.autismspeaks.org/family-services/tool-kits/100-day-kit
- If your child is not diagnosed with autism spectrum disorder, he or she may still need services such as early intervention, special education, or private services for the delays or behaviors that prompted you to seek help in the first place. Follow up with recommendations from your evaluation to help your child make progress in his or her development.
- Obtain the American Academy of Pediatrics Publication Autism Spectrum Disorders: What Every Parent Needs to Know. http://www.amazon.com/Autism-Spectrum-Disorders-Every-Parent/dp/1581106513/ref=sr_1_1?ie=UTF8&qid=1462196107&sr=8-1&keywords=carbone+autism. This inexpensive guide covers autism throughout the lifespan.
- Solicit help and support from family, friends, and autism support groups. Several support groups exist to assist parents through the evaluation, diagnosis, and treatment processes. These support groups may function by holding regular meetings, providing telephone support, or communicating electronically. Support groups may be found by contacting the Utah Parent Center at (800) 468-1160, (801) 272-1051, or (http://utahparentcenter.org/wp-content/uploads/2015/10/Parent-and-Family-Supports-Autism-Specific.pdf)
- Create a filing system for compiling important information and documents (e.g., personal documentation, developmental milestones, diagnostic history, education history, social skill development, copies of reports and evaluations). Include information about what your child likes/dislikes, how he/she is motivated, and his/her strengths and interests. This can be organized in a binder that you take with you to appointments or summarized in a document you share with service providers. https://www.carautismroadmap.org/?s=binder&print=pdf-page
- Contact the Division of Services for Persons with Disabilities (DSPD). DSPD intake workers will evaluate your child for eligibility for their home and community-based services such as community living, day services, supported employment services, and support for people with disabilities and their families. There is a waiting list to access these services, so it is recommended that you contact them shortly after receiving the diagnosis. Visit http://www.hsdspd.utah.gov. You can obtain assistance with completing paperwork for needed supports by contacting the Disability Support Center for Families (disabilitysupportcenter.org). They also provide information and referral assistance, parent trainings and support groups, and Spanish interpreters.
- Apply for Social Security and Supplemental Security Income. The Social Security and Supplemental Security Income (SSI) disability programs are Federal programs that provide monthly assistance to people with disabilities. While these two programs are different in many ways, the Social Security Administration administers to individuals who have a disability and meet medical criteria may qualify for benefits under either program. SSI is a federal program that provides monthly cash payments to people in need. SSI is for people who are 65 or older, as well as for people with disabilities of any age, including children. Visit ssa.gov or call (800-772-1213)
- Apply for Medicaid and the Autism Medicaid Waiver. Medicaid is a state/federal program that pays for medical services for individuals with a disability. You may apply for Medicaid in person at in Department of Workforce Services (DWS) location, by mail, or online at https://medicaid.utah.gov. The Autism Medicaid Waiver is a state program in which home and community based ASD-related services are covered by Medicaid. The current waiver program serves children between 2-6 years of age; however, recent legislation has made it so that Medicaid will be required to serve any Medicaid-eligible client under 21 years of age. Information about the Autism Medicaid Waiver can be found at http://health.utah.gov/autismwaiver. For more information go to http://www.autismmandatesummit.com/#
- Take videos of your child. Many parents have found that reviewing videos of their child with service providers assists in the diagnostic process. It also serves to show progress over time.
- Review various service delivery options.
- Publicly-funded treatment. Your local publicly-funded agency (early intervention, early childhood special education, K-12+ special education in both district and charter schools) will provide services based upon an Individualized Family Service Plan (IFSP; 0-3 years) or an Individualized Education Program (IEP; 3-22 years), a legal document which outlines the services they will provide. The IFSP also outlines goals determined for the child and his/her family.
- Private treatment. You may consider contacting a private agency that serves infants, toddlers, and children with ASD. These agencies charge fees for their services, often on a sliding-scale, based upon family income. Check with your health insurance provider to ascertain whether they cover treatments for children with ASD. Utah has a law that will increase the chances that insurance will cover services. Medicaid now covers autism treatments.
- You can supplement your publicly-funded treatment with private treatment. Some families choose to fund speech therapy, home-based programming, community-based training, social skills, and other services beyond what the school provides. Furthermore, consultation groups exist which help coordinate services, serve as advocates in school or other meetings, and they may also provide direct services to families.
- Find which service providers are available in your area. Autism Source is the Autism Society of America’s online referral database of ASD related services and supports. Autism Source is free, searchable by location or service type, and provides resource listings throughout the United States. Listings include: many types of service providers, ASA Chapters, support groups, medical professionals, educational facilities, legal services, government agencies, research centers, and more. Available at: http://www.autismsource.org/. Lists of services in Utah are available from the Utah Parent Center (http://www.utahparentcenter.org/publications/autism-resource-lists/) and the Autism Council of Utah: http://autismcouncilofutah.org/resources/.
Review various treatment options.
- Review options in four categories of treatments (behavior/communication, dietary, medical, alternative/complementary) from Centers for Disease Control and Prevention: http://www.cdc.gov/ncbddd/autism/treatment.html, Autism Speaks: https://www.autismspeaks.org//what-autism/treatment#aba, and the Autism Society of America: http://www.autism-society.org/living-with-autism/treatment-options/
- Review the Autism Society of America’s comparison chart for evidence-based practices: http://www.autism-society.org/wp-content/uploads/2014/04/ebp-comparison-chart-o.pdf . More detailed information about treatments can be found in the National Autism Center’s Parent Manual http://www.nationalautismcenter.org/national-standards-project/results-reports/
- Review information about complementary and alternative treatments from Autism Speaks: https://www.autismspeaks.org/what-autism/treatment/complementary-treatments-autism
- Review options and guidelines for effective treatment on the Autism Council of Utah’s website: http://autismcouncilofutah.org/treatments/
- Determine which treatment(s) are most viable and beneficial given your unique family situation, your child’s circumstances, and assessment results, then begin treatment as soon as possible.
- Collaborate with professionals to monitor and evaluate progress by taking careful notes and daily logs of behavior to discern which interventions are providing the best results. Collaborate with agency/school personnel (e.g., teacher, physician, psychologist, speech-language pathologist) to compare how your child is doing. Work together to help your child transfer or generalize skills across different environments, people, materials, time of day, and instructional cues, and make necessary changes in your child’s treatment plan for optimal outcomes.
- Take an online introductory course such as the Autism 101 course through the Autism Society of America: http://www.autism-society.org/autism-101-online-course/ , the National Professional Development Center: http://autismpdc.fpg.unc.edu/national-professional-development-center-autism-spectrum-disorder, or Yale University: http://autism.yale.edu/.
- Learn about the law and your rights in your child’s education. If your child is being served by a publicly-funded organization, they will give you a document detailing your “Parents’ Rights.” This may be a lengthy document accompanied by a brief summary. You may also access information about education law at sites such as: wrightslaw.com. Also, the Utah Parent Center provides one-on-one consultations, workshops, trainings, and information (800-468-1160) or (801) 272-1051 or www.utahparentcenter.org.
Don’t get discouraged! Getting a diagnosis of ASD for your child can change your family’s life. Realize that this is a marathon, not a sprint. Take care of yourself and your other family members, and let others help you for the benefit of your child and your family.
Since we don’t know the exact cause of ASD and we don’t have a definite cure, many families have found that treating the symptoms using a multi-faceted approach is most beneficial. Each child is unique; therefore, what works for some children with ASD may not work for your child with ASD. Be persistent in finding the specific resources and treatments that work for your situation.
Tina Taylor Dyches & Leeann Whiffen for the Autism Council of Utah (2008; 2009)
Tina Taylor Dyches, Ashley Stevens & Terisa P. Gabrielsen (2016)