What is Autism?
  • Autism is a neurodevelopmental disability that impacts how a person communicates, interacts with others, and behaves. About 1 in 31 (3.2%) children aged 8 years have been diagnosed with autism. Autism looks different for each person. For example, some autistic children are able to communicate with verbal speech, while others cannot. Some individuals with autism may need high levels of support, while some may need little to no support. The level of support may also change as an individual gets older or learns new skills.
  • There is no single cause of autism. Genetics, medical conditions, and heredity can play a role in the cause of autism. Researchers continue to investigate the cause of autism. 

When a child is diagnosed with autism, many families have a hard time figuring out what to do next. Providers often give many recommendations, and it can be hard to get started with services and supports. 

  • Start with the most important things: Identify one or two services or supports that are the most important. These can be types of therapies, financial resources, or connections with community support.

 

Data and Statistics on Autism Spectrum Disorder | Autism Spectrum Disorder (ASD) | CDC and Frequently Asked Questions about Autism Spectrum Disorder | Autism Spectrum Disorder (ASD) | CDC

Support
The Regional Autism Assistance Program:
Autism Speaks:
Autism Speaks has published several guides for families to help them with the first 100 days after their autism diagnosis, available in several languages:
ASK Resource Center:
  • ASK (Access for Special Kids) Resource Center is a parent training, information, and advocacy center for families of children with special needs across the state of Iowa. ASK Resource Center has Family Support Specialists who can help families access resources in the community.     
    • ASK Family Support Specialists can help families with school-based services. They can help families talk with school teams and advocate for their child.
    • ASK Resource Center has published many guides, videos, and webinars on a variety of topics, including school and community services, transition to adulthood, financial services, and more. 
Other common disabilities diagnosed (ID, ADHD, anxiety, speech/language delays or global developmental delay):
  • It’s common for people with autism to have other co-occurring conditions such as intellectual disability, anxiety, speech/language delays, sleep or gastrointestinal (GI) issues. If you are concerned about other conditions, reach out to your child’s doctor for help. 

Financial
Social Security Income (SSI):

A child may be eligible for Social Security Income (SSI) if the child has a diagnosed disability. SSI is determined by disability and household income. You can apply for SSI online, over the phone, or at your local social security office. You can find more information on the SSI Start Kit for Children. 

Medicaid:

Medicaid for Kids with Special Healthcare Needs (MKSN) can help pay for the cost of medical care for kids with disabilities. Medicaid for Kids with Special Healthcare Needs has a higher income threshold than what typical Medicaid does.  MKSN can help cover the cost of ABA, speech, occupational, or physical therapy. 

Waivers:

In Iowa, there are seven programs called Home-and Community-Based Services (HCBS) Waivers. These waivers help people get connected to community services and provide wrap around services for individuals with disabilities. A person with autism may qualify for the Health and Disability Waiver. 

Autism Training for Families and Providers

Autism-based trainings: Many families want to learn more about autism to help their child at home and in their communities. We often recommend the following training for families and providers to learn more about supporting autistic people. 

Autism Internet Modules

Community Resources
UI Safety Store:  
  • Open to anyone, the Safety Store offers a wide range of child safety products designed to prevent injuries both inside and outside the home. Families can shop online for safety products, including car seats, helmets, ear protection (headphones), home safety equipment, and more!
DRL:
Compass:
  • Iowa Compass can help people find resources for people with disabilities. The site includes a directory of different supports and services available to Iowans. 

Therapies
  • Updated ABA list:
  • To find local speech-language pathologists, occupational therapists, physical therapists, play therapists, mental health therapists and more, please reach out to your child’s doctor. They can help you find someone local. Your doctor can also send a referral to these services. 

Out of State Resources

National Resources

Schools

Sometimes, finding help at schools starts with contact your local Area Education Agency. You can find the right agency to contact using the Find My AEA tool.

Families have the right to request a special education evaluation. While a medical evaluation can provide important information for that evaluation, the IEP team (the school, the AEA, teachers, and parents) determine if a child is eligible for special education. You can learn more about your rights on Iowa’s Special Education website. 

Young Teens and Young Adults with Disabilities

As you or your child becomes a teenager, it’s important to start thinking about what will happen when you or your teen leaves school. Will they need support? Do they need job training? Families often have a lot of questions about what might happen next. Here are some resources to help with these conversations: 

There are many ways to plan for your child becoming a young adult. Often, teachers and professionals refer to this time as “transition” because a child is transitioning into adulthood. Here are some helpful Toolkits and resources for families to review: 

Conservatorship/Guardianship:

As people with disabilities become adults, they sometimes need their parents or other caretakers to have Guardianship and/or Conservatorship.

Future services for teens and young adults:

As you start to consider your child as a young adult and adult, consider what kind of financial support they might need. If you believe your child may benefit from state funding in any way, applying while your child is younger is the best way to access those services and supports when they are a young adult: 

  • Social Security Income (SSI)
    • A child may be eligible for Social Security Income (SSI) if the child has a diagnosed disability. SSI is determined by disability and household income. You can apply for SSI online, over the phone, or at your local social security office. You can find more information on the SSI Start Kit for Children.
  • Medicaid
    • Medicaid for Kids with Special Healthcare Needs (MKSN) can help pay for the cost of medical care for kids with disabilities. Medicaid for Kids with Special Healthcare Needs has a higher income threshold than what typical Medicaid does.  MKSN can help cover the cost of ABA, speech, occupational, or physical therapy.
  • Waivers
    • In Iowa, there are seven programs called Home-and Community-Based Services (HCBS) Waivers. These waivers help people get connected to community services and provide wrap around services for individuals with disabilities. A person with autism may qualify for the Health and Disability Waiver.
Transitioning Medical Services from Pediatrics to Adult Practitioners:
Post Secondary Planning:

I'm An Adult with Autism
Autistic adults can find information on community living and self-advocacy here: 

Autism Speaks Adult Tool Kit

Autism Speaks LGBTQ+ Gender and Sexuality Resources

Autism Speaks Resources for Autistic Adults

Conner Training Connection - Advancing Community Living

College Disability Services Information

Intellectual Disability-Mental Illness Program | Department of Psychiatry - Carver College of Medicine | The University of Iowa

Iowa Center of Excellence for Behavioral Health (CEBH)

Job Accommodation Network: Accommodations at work for autistic adults

Support for Students: Neurodiversity and Autism Spectrum Disorder | Dean of Students - Division of Student Life | The University of Iowa

Toolkit for Newly Diagnosed Adults

Training to learn more about sexuality and developmental disabilities

For more information, please contact:
Ali McCue, M.A., CC-SLP
Autism Center Clinic Coordinator
Center for Disabilities and Development
Phone: (319)-353-6900
Email: autism-center@uiowa.edu