I am Newly Diagnosed. Now What?

New Diagnosis Check List For Parents

□ Concerned About Your Child’s Development? Learn More Here:

• CDC Developmental Milestones and Checklist for Ages 2 months-5 years: cdc.gov/act-early/digital-online-checklist/index.html
• CDC Article & Resources | Developmental Monitoring & Screening: cdc.gov/act-early/about/developmental-monitoring-and-screening.html
• CDC Article | Screening for Autism Spectrum Disorders: cdc.gov/autism/diagnosis/index.html#cdc_testing_when_to_tested-developmental-screening
• On Our Sleeves Article | When You’re Worried About Your Child’s Development: onoursleeves.org/mental-wellness-tools-guides/kids-behavioral-health/when-youre-worried-about-your-childs-development
• Autism Society | Identifying Autism & Diagnosis Per Stage: autismsociety.org/screening-diagnosis
• Nationwide Children’s Hospital | Autism Spectrum Disorder Signs, Diagnosis & Treatment: nationwidechildrens.org/conditions/autism-spectrum-disorder

□ Get a Developmental Evaluation for Your Child:  

• State of Ohio Programs | Help Me Grow and Bold Beginning: odh.ohio.gov/know-our-programs/help-me-grow/help-me-grow?la=en
  • Help Me Grow: cap4kids.org/columbus/help-me-grow
  • Bold Beginnings: cap4kids.org/columbus/bold
• Nationwide Children’s | Autism Care Network/Developmental Evaluation: nationwidechildrens.org/specialties/center-for-autism-spectrum-disorders/autism-care-network/developmental-assesment
• Nationwide Children’s Autism Early Screening & Diagnosis: nationwidechildrens.org/specialties/center-for-autism-spectrum-disorders/early-screening-and-diagnosis
• Cap4Kids | Developmental Evaluations: cap4kids.org/columbus/early-intervention-development/information-about-developmental-evaluations
• Child Mind Institute Article | What Should an Autism Evaluation Look Like: childmind.org/article/what-should-evaluation-autism-look-like

□ Learn About Your Child’s Autism Diagnosis:

• Autism Speaks | 100 Day Kit for Families of Young Children Newly Diagnosed: docs.autismspeaks.org/100-day-kit-young-children
• Autism Speaks |100 Day Kit for Families of School Aged Children Newly Diagnosed: docs.autismspeaks.org/100-day-kit-school-age-children
• Reframing Autism | About Autism: reframingautism.org.au/service/i-am-newly-diagnosed
• Reframing Autism | Autism Glossary: reframingautism.org.au/service/glossary-terms
• Nationwide Children’s | Autism Spectrum Disorder: nationwidechildrens.org/conditions/autism-spectrum-disorder
• Nationwide Children’s | Common Co-diagnoses Occurring with ASD: nationwidechildrens.org/family-resources-education/700childrens/2022/03/common-co-diagnoses-autism-spectrum-disorder
• Milestones | Milestones Autism Planning Tool: milestones.org/map/get-started
• Milestones | First Diagnosis Tool Kit (English and Spanish): milestones.org/resources/tool-kits/first-diagnosis-tool-kit
• Sesame Street | Autism Initiative for Parents & Kids: sesameworkshop.org/topics/autism
• Small World Special Needs | Understanding Autism Videos in Japanese, Nepali, Indonesian, Chinese, and English: youtube.com/channel/UCVtUXrRRBohcQahB-_Ft6uA/videos
• Reframing Autism | Welcome to the Community for Newly Diagnosed Adults: reframingautism.org.au/wp-content/uploads/2024/04/Autistic-Welcome-Pack.pdf
• Child Mind Institute Article | How to Tell Your Child About Their Autism Diagnosis: childmind.org/article/how-to-tell-your-child-about-their-autism-diagnosis

□ Get A Service Coordinator through Your Local Board of Developmental Disabilities to Access Autism Scholarships and Other Services:

County Board of Developmental Disabilities

• After your child turns 3, contact your local Board of Developmental Disabilities and ask to be assigned a Service Coordinator. Service Coordination can help your family get connected with appropriate local services and look into options for funding from 3 years old to adulthood.
  • Contact Your Local Board of DD: cap4kids.org/columbus/department-of-developmental-disabilities
  • Medicaid Waiver Services: cap4kids.org/columbus/medicaid-waiver-services

Steps to Obtain a Home Health Aide:

• Identify eligibility/funding for Home Health Aide OR Homemaker Personal Care Support:
  Check with your insurance plan to determine if this service is covered.
  Check to see if your child has Waiver Funding through your local County Board of Developmental Disabilities.
• Search for Local agencies or independent providers through your insurance plan or Waiver:
  Department of Developmental Disabilities Provider Search Tool: dodd.ohio.gov/your-family/all-family-resources/provider-search
• Have the identified agency send request of 485 form to your physician’s office for signature.

Tools

• Milestones | Get Help from Ohio DoDD Tool Kit (English and Español): milestones.org/resources/tool-kits/navigating-the-dept-of-developmental-disabilities
• Autism Self-Advocacy Network | Guide to Managed Long-Term Supports & Services: autisticadvocacy.org/policy/toolkits/mltss
• Disability Rights Ohio | SSI & SSDI Guide: disabilityrightsohio.org/social-security-rep-payee

□ Get Educational Supports:

Autism Scholarship

• Provided by the Ohio Department of Education. If a child has an IEP under the Autism Classification and/or a medical diagnosis of autism, they may qualify for this scholarship, which can be used to help pay for Autism-specific services through a registered private provider, rather than the child’s resident school district. Information on the Autism Scholarship, and locations where the scholarship is accepted, can be found at: education.ohio.gov/Topics/Other-Resources/Scholarships/Autism-Scholarship-Program

IEPs

• Contact your child’s local school district and let them know that you have a child within their district that may meet the criteria for special education services. Ask to schedule an Evaluative Team Report (ETR)/ Multifactor Evaluation (MFE). This will be used in compiling an Individualized Education Plan (IEP).
• CAP4Kids | Columbus City Schools Special Education: cap4kids.org/columbus/columbus-city-schools-special-education
• CAP4Kids| Letters Parents Can Use for IEPs and Special Education: cap4kids.org/columbus/letters-parents-can-use-for-special-education

Resources & Tools

• Franklin County Family & Children First Council | Service Coordination Services: cap4kids.org/columbus/franklin-county-family-children-first-council-fcfc
• CAP4Kids | Special Needs Schools: cap4kids.org/columbus/autism/education-autism
• Reframing Autism | About Me Printable Template for Your Child’s New Teacher: reframingautism.org.au/about-me-a-downloadable-template-for-your-childs-new-teacher
• Autism Speaks | Guide to IEPs: docs.autismspeaks.org/iep
• Milestones | School Toolkit: milestones.org/resources/tool-kits/school-tool-kit
• Milestones | Homework Toolkit: milestones.org/files/assets/homework-tool-kit-printable-2019.pdf
• Vanderbilt Kennedy Center | Building a Home-School Partnership Toolkit: vkc.vumc.org/assets/files/resources/partnership.pdf

□ Get Autism-Specific Therapies and Coordinate with Your Child’s Healthcare Team:

• Autism Society | Intervention & Therapies: autismsociety.org/resources/intervention-and-therapies

ABA Therapy

• Applied-Behavior-Analysis (ABA), or behavior-based intervention is most recommended at this time. It is the type of intervention with the most comprehensive research support in long term improvements in learning/communication, behavior, and social skills. This teaching method breaks down complex skills into smaller pieces and then teaches these pieces using specific prompts and frequent repetition. Then, as the child learns the individual steps, they are taught how to put them together and then generalize them. ABA therapists work with the family to set and work through goals across different domains (e.g., academics, behavior, adaptive, and social).

Traditionally, ABA is implemented at home or at a center under the direction of a behavioral consultant (preferable a qualified licensed psychologist or a Board-Certified Behavior Analyst – BCBA) and delivered by therapists who are trained by this consultant

• Autism Speaks | ABA Guide: autismspeaks.org/sites/default/files/2018-08/Applied%20Behavior%20Analysis%20Guide.pdf
• CAP4Kids | ABA Providers: cap4kids.org/columbus/autism/aba

Speech Therapy

• Speech therapy can support the development of your child’s language, communication, and play skills. Occupational therapy can help improve gross and fine motor skills, increase adaptive behavior skills, and provide intervention for sensory differences. Many clinics offer both speech and occupational therapy. Contact your child’s pediatrician for recommendations for local providers and for referrals.
• NCH OT, Speech, & PT: cap4kids.org/columbus/nch-therapy-programs
• Columbus Area Speech: cap4kids.org/columbus/columbus-area-speech-therapy
• Columbus Speech & Hearing Center: cap4kids.org/columbus/columbus-speech-and-hearing-center

Psychology & Psychiatry

• Individual at-home or outpatient treatment where a therapist works with the family on specific goals such as reducing problem behavior and increasing specific skills like play skills.
• CAP4Kids | Mental Health Providers Specializing in Autism: cap4kids.org/columbus/autism/mentalhealth
• Milestones | Mental Health Toolkit: milestones.org/resources/tool-kits/mental-health-tool-kit

□ Start Using Positive Behavioral Supports at Home:

• Build Communication Skills
  • Narrate your child’s play and daily events using simple words and phrases.
  • Give a choice between two: Hold up two options, pause, and wait for your child to communicate which one they want, such as reaching for object, directing eye contact, or directing vocalizations. Respond naturally by providing what they want.
  • Use gestures, such as waving goodbye, pointing, blowing kisses, to help convey meaning and encourage familiar routines.
  • To encourage use of vocalizations and facial expressions, try “pausing in a familiar routine.” For example, pause while reading a book together, wait expectantly for your child to communicate through vocalizations or eye contact, and respond naturally by continuing to flip the pages once they communicate.
  • Imitate all forms of communication. Caregivers are encouraged to imitate your young child’s vocalizations, facial expressions, and body movements in a playful and animated way. This helps to teach your child that their communications are meaningful and can encourage positive engagement and learning.
  • Create opportunities for communication. Caregivers may create opportunities such as putting preferred objects in sight and out of reach (to elicit gaining your attention) or controlling access to items/giving small portions (to elicit asking for more).
• Diversify Play and Object Interactions for Young Children
  • Children learn through interaction with objects and play. Diversifying your child’s play will help build and maintain cognitive skills and fine motor skills. We encourage caregivers to use “hand-over-hand modeling” when teaching new skills or asking your child to complete a task (For example, when you ask him to put the block in the box, you can help him to grab the block with your hand placed over his hand and move it there with him). When your child engages in any new activities, even for a short while, offer positive praise and natural rewards.
  • PEEKABOO- Place a toy or book under a blanket. Then ask, “Where is it?” and encourage him to look for it.
  • STACKING- Encourage your child to stack large blocks or cups. Progress to stacking smaller blocks.
  • READING- Regularly read books to your child, pointing to the pictures as you read and changing your voice for different characters. Invite your child to participate by encouraging them to laugh or act surprised by the story, touch the pictures, and turn the pages.
  • CONTAINER PLAY- Start with a big container with a large opening (a basket, box, bin) and encourage your child to “put in” and “take out” toys one by one. These toys can include easy to grasp toys such as blocks. Progress by selecting a container with a smaller opening.
  • IMITATION- Encourage your child to imitate your actions. For example, when singing a song, demonstrate clapping and encourage them to clap along with you.
  • PRETEND PLAY- Use everyday objects (such as a banana or toy) to pretend to talk on the phone. Offer the pretend phone to your child and encourage them to vocalize to develop pretend play skills. Other pretend play can include feeding a stuffed animal or making a toy airplane fly.
  • CAUSE AND EFFECT TOYS- Play with cause and effect toys such as pop-up toys, simple ball drop toys, or oversized piggy banks.
• Use Behavior Support Prevention Strategies for All Ages
  • Vanderbilt Kennedy Center | Visual Supports and Autism Spectrum Disorders: vkc.vumc.org/assets/files/resources/visualsupports.pdf
  • Nationwide Children’s | Communication & Interaction Tips: nationwidechildrens.org/conditions/health-library/interacting-with-a-child-who-has-autism-spectrum-disorder
  • Nationwide Children’s | Behavior Support Prevention Strategies: nationwidechildrens.org/family-resources-education/health-wellness-and-safety-resources/helping-hands/behavior-support-preventative-strategies
  • Nationwide Children’s | Catching Your Child Being Good: nationwidechildrens.org/family-resources-education/health-wellness-and-safety-resources/helping-hands/behavior-support-catching-your-child-being-good
  • Nationwide Children’s | Using a Schedule: nationwidechildrens.org/family-resources-education/health-wellness-and-safety-resources/helping-hands/behavior-support-using-a-schedule
  • Nationwide Children’s | Reducing Interruptions: nationwidechildrens.org/family-resources-education/health-wellness-and-safety-resources/helping-hands/behavior-support-reducing-interruptions
  • Milestones | Visual Supports/Schedules Toolkit: milestones.org/resources/tool-kits/visual-supports-tool-kit
  • Milestones | Toilet Training Toolkit: milestones.org/resources/tool-kits/toilet-training-tool-kit
  • Nationwide Children’s | Positive Behavior Reinforcement Sticker System Instructions: cap4kids.org/columbus/files/2024/05/Behavior-Support-Reinforcement-System.pdf
  • Nationwide Children’s | Using Planned Ignoring At Home: nationwidechildrens.org/family-resources-education/health-wellness-and-safety-resources/helping-hands/behavior-support-using-planned-ignoring-at-home

□ Get Support for You and Your Family:

• RUBI Parent Program: Nationwide Children’s provides a therapy based, behavioral parent program designed to reduce disruptive behavior and improve adaptive behavior in children. The class meets virtually and is designed to serve families with children with autism and other developmental disabilities. Find information and get registered here: nationwidechildrens.org/for-medical-professionals/education-and-training/echo/series/rubi
• Nationwide Children’s Center for Autism Spectrum Disorders | Classes for parents and siblings: cap4kids.org/columbus/nch-casd
• CAP4Kids | Autism Support Groups: cap4kids.org/columbus/autism/support
• CAP4Kids | Fun & Recreation for Kids with Autism: cap4kids.org/columbus/autism/rec
• CAP4Kids | Autism Respite Resources: cap4kids.org/columbus/autism/respite
• Nationwide Children’s Program | Connecting Families Peer-to-Peer Mentoring: cap4kids.org/columbus/connecting-families-at-nationwide-childrens-hospital
• Nationwide Children’s Article | Family Support for Autism Spectrum Disorder: nationwidechildrens.org/conditions/health-library/family-support-for-autism-spectrum-disorder
• Child Min Institute Article | Sharing an Autism Diagnosis with Family and Friends: childmind.org/article/sharing-an-autism-diagnosis-with-family-and-friends

□ Prepare for Life Transitions:

Transition Toolkits: Day Programs, Employment, and More

• Life Journey Through Autism: A Guide for Transition to Adulthood
•  Nationwide Children’s Hospital | Autism and Developmental Disabilities Transition to Adulthood RoadMap:  cap4kids.org/columbus/files/2024/05/Autism-and-Developmental-Disabilities-Transition-Road-Map.pdf
• Autism Speaks | Roadmap to Meaningful Employment from Some Support Needs to Intensive Support: docs.autismspeaks.org/employment-roadmap-adults
• Autism Speaks | Puberty and Adolescence: cap4kids.org/columbus/files/2024/05/Puberty-and-Adolescence-Resource-compressed.pdf

Scholarships/Financial Help

• CAP4Kids| Autism Scholarships & Financial Help : cap4kids.org/columbus/autism/financial
• Milestones | Post-Secondary/College Toolkit: milestones.org/resources/tool-kits/post-secondarycollege-tool-kit

Healthcare

• OSU Nisonger Center: cap4kids.org/columbus/nisonger-center
• NCH Autism Transition Program: cap4kids.org/columbus/nchtransition
• OSU CAST Autism Transition Program: cap4kids.org/columbus/the-ohio-state-university-osu-center-for-autism-services-and-transition-cast
• Got Transition: cap4kids.org/columbus/gottransition
• CAP4Kids | Finding An Adult Doctor in Columbus: cap4kids.org/columbus/adulthealthcare
• AASPIRE Healthcare Toolkit for Patients and Supporters: autismandhealth.org

Housing

• CAP4Kids | Housing for People with Disabilities in Columbus: cap4kids.org/columbus/housing/housing-for-people-with-disabilities
• CAP4Kids | Respite Care in Columbus: cap4kids.org/columbus/special-needs/breaks-for-caregivers