While this list is not complete, here are some helpful pages with different resources on them!
Advocacy Sites
Autism 101
Newly Diagnosed?
Meltdowns and Emotional Regulation
IEP Help
AAC Resources
Favorite Autism Blogs
Books, Films, and Media
Info Sheets and Created Resources
Resources for Autism/Sensory Products
Local Resources – East Tennessee Area
Advocacy Sites
Autism 101
Newly Diagnosed?
Welcome to the family!
Receiving a new diagnosis can be stressful, but it can also be a relief. Remember: nothing about you or your loved one has changed. You just have more information than you did before!
Resources for newly diagnosed autistic people:
- Welcome to the Autistic Community
- A free e-book explaining the spectrum and welcoming newly diagnosed autistics; there is an adolescent and adult version.
- AWN Network Welcome Autistic Adults Packet
- Specifically for autistic women and non-binary individuals, created by the Autistic Women and Nonbinary Network
Resources for parents, caregivers, and loved ones:
- Today, Your Child Was Diagnosed with Autism #AutismMoon, by Autistic, Typing
- Start Here: A Guide for Parents of Autistic Kids, by Autistic Self-Advocacy Network, Autistic Women and Nonbinary Network, Little Lobbyists, and The Thinking Person’s Guide to Autism
- A note: you can buy a copy, but you can also download the PDF for free!
- Information & Resources for Parents & Caregivers of Newly Diagnosed Autistic Girls, by the Autistic Women and Nonbinary Network
- The Thinking Person’s Guide to Autism
Meltdowns and Emotional Regulation
I posted much more in-depth regarding meltdowns on my Managing and Preventing Meltdowns post, as I presented on it in a conference. It also has some printables and visuals you can use as well!
More Resources
- Understanding Autism, Aggression and Self-Injury: Medical Approaches and Best Support Practices
- Behavior Support Checklist (Tennessee Council on Developmental Disabilities)
- 5 Point Scale
- ASAN: Color Communication Badges
- ASAN: Autism and Safety Toolkit
- Judy Endow, MSW, LCSW
- We Are Like Your Child – A checklist for identifying sources of aggression
IEP Help
Here’s my Beginner’s Guide to the IEP post! It also includes a sample IEP that I made, along with an overview of the critical parts of an Individualized Education Program. Make sure to scroll to the bottom for a very long list of extra resources as well.
- TN STEP
- TN STEP has a lot of great information on navigating the special education setting. While based in Tennessee, the information is helpful for other states as well.
- 5 reasons parents play a key role in the IEP process – Understood.org
- A helpful page describing aspects of the IEP and help for families.
AAC Resources
My AAC introduction post – discusses different types of AAC, apps, and more
Favorite AAC Users’ Blogs, Social Medias, and Websites:
- AnotherQueerAutistic
- Autistic AAC Underground
- Nigh.functioning.Autism
- Jordyn Zimmerman
- Spelling with Will
- TuttleTurtle
- Grace Falleur
- Alyssa Hillary Zisk, PhD
- Rhema’s Hope
- Lost Voice Guy
- Actually Autistic Alex
- Click Speak Connect
Parents of AAC Users’ Blogs and Social Medias:
First-hand Knowledge from AAC Users and Nonspeakers:
- LISTEN: a short film made by and with nonspeakers
- This Is Not About Me
- People Like Me
- Communication First
AAC Trainings and Information:
- Stepping Into AAC Training – Angelman Syndrome Foundation and PrAACtical AAC
- AAC Essentials Training – Tech OWL, Institute on Disabilities at Temple University
- Best Practices for Implementing AAC Devices – Lilly’s Voice
- NWACS Communication Bill of Rights FAQ – Northwest Augmentative Communication Society
- Communication Bill of Rights – American Speech and Hearing Association
Free Printables:
- Communication Board – Tobii Dynavox: PCS and QWERTY
- Tobii Dynavox – Low Tech AAC
- AssistiveWare – AAC Resources
Funding:
- Lilly’s Voice
- Your local chapter of The Arc
- Sometimes your local Arc chapter may have funding to help access a communication device, depending on what’s available.
- Your state’s Assistive Technology centers
- These are a thing! Many states have centers where they can help you access assistive tech.
- Medicaid, Home and Community-Based Services, and (sometimes) insurance plans
- This can be difficult, but sometimes they will cover communication devices. I know at least in Tennessee, ECF Choices can cover assistive technology.
- Vocational Rehabilitation
- This might be an option for older individuals rather than children – and for people who are planning on working. But Vocational Rehabilitation is supposed to provide you with things related to your disability that you need to succeed in the workplace, in your education, etc – and if that includes AAC, there you go!
Articles and Books:
- AssistiveWare: What is AAC?
- ‘Augmentative and Alternative Communication for Speaking Autistic Adults: Overview and Recommendations’ – Dr. Alyssa Hillary Zisk and Dr. Elizabeth Dalton
- ‘Am I the Curriculum?’ – Dr. Alyssa Hillary Zisk
- Leaders Around Me: Autobiographies of Autistics who Type, Point, and Spell to Communicate
- Communication Alternatives in Autism: Perspectives on Typing and Spelling Approaches for the Nonspeaking
- A Day With No Words – Tiffany Hammond, illustrator Kate Cosgrove
- A Voice of Her Own – Lois Yong and Sarah Yong
- My Brother Otto – Meg Raby, illustrator Elisa Pallmer
- AAC Rhyme time – Amanda C. Hartmann, illustrator Nanhee Ha
- The Many Mysteries of the Finkel Family – Sarah Kapit
- Out of My Mind – Sharon M. Draper (also adapted into a film!)
- Looking Through My Eyes – Lydia Dawley, illustrator Jennifer Hyles
(Some) Favorite Autism Blogs and Accounts
Autistic Blogs:
Parent Blogs:
Books, Film, and Media
Books:
- Raising Human Beings: Creating a Collaborative Partnership with Your Child – Dr. Ross Greene
- Sincerely, Your Autistic Child – Autism Women and Nonbinary Network
- Why Johnny Doesn’t Flap: NT is OK! – Clay Morton and Gail Morton
- A Day With No Words – Tiffany Hammond, illustrator Kate Cosgrove
- Loud Hands: Autistic People, Speaking – Autistic Self Advocacy Network
- I Will Die On This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World – Meghan Ashburn and Jules Edwards
- NeuroTribes: The Legacy of Autism and the Future of Neurodiversity – Steve Silberman
- And Straight on Till Morning: Essays on Autism Acceptance – Autistic Self Advocacy Network
- Uniquely Human: A Different Way of Seeing Autism – Barry M. Prizant, PhD
Films:
Info Sheets and Created Resources
Visual Schedules
These are some simple visual schedule sheets. I uploaded the Microsoft Word versions for some so that you can edit them as needed, putting in what pictures or colors you prefer.
Workshops and Projects
From My Beginner’s Guide to the IEP Post:
- Mock IEP Project – I wrote this from scratch for an assignment. It’s definitely not perfect, but it might be helpful as a representation of what the document looks like.
Presentations
From My Managing and Preventing Meltdowns Post:
- Managing and Preventing Meltdowns PowerPoint
From My Organization and Planning: Practical Strategies for Independent Living Post:
Outside Informational Sheets and Presentations
These are documents and resources not created by me, but are super helpful.
From the Emergency Medicine Post
- Medical Emergencies: A Practical Guide PowerPoint
- I was granted permission by the wonderful ETSU EM/ERGE group that created this PowerPoint to share it here. This belongs to them, not me. For any additional questions or inquiries, please contact EMERGETSU@gmail.com!
Resources for Sensory Products
Full disclosure: I’m not getting any commissions or payment from any of these. I’ve used a lot of these, and have friends who have used others on this list that I haven’t. Unfortunately, the favorite shop Stimtastic in our community is on hiatus until further notice.
You can also visit your local dollar store to find objects and materials that can be repurposed for sensory tools! Sensory tools are becoming more widely available – and you can sometimes find them at stores like Five Below, Target, and others.
If you have any recommendations for autistic-owned shops or sources, please let me know!
Stim toys, weighted blankets, and other sensory tools:
- SensaCalm
- Weighted blankets and lap pads (expensive but well-made)
- Chewigem
- Chewable jewelry and sensory objects
- ARK Therapeutic
- Sensory tools, mostly chewables
Local Resources – East Tennessee
Services, Supports, and Funding
- Tennessee Disability Pathfinder
- Statewide database for supports and services
- The Arc – Washington County
- The Tri-Cities local chapter for The Arc, which provides support for individuals with intellectual and developmental disabilities – as well as their families. For other areas, click here.
- Tennessee Early Intervention System (TEIS)
- Information on TN’s early intervention program
- Information on TN’s early intervention program
- Employment and Community First CHOICES
- State-run Medicaid-based program that helps provide home and community-based services for people with disabilities.
- Katie Beckett Waiver
- State-run program that allows for people with disabilities under the age of 18 to access home and community-based services, even if their family does not qualify for Medicaid.
- Medicaid Alternative Pathways to Independence (MAPs)
- State-run program focused on people with disabilities who are transitioning from high school, young adults, and people on waiting lists for services.
- State-run program focused on people with disabilities who are transitioning from high school, young adults, and people on waiting lists for services.
- Tennessee Technical Assistance Network (TN-TAN)
- Statewide resource guide with various services, including resources for assistive technology, intensive behavior, and students in transition after high school.
- In addition to families, the guide is also meant to support Tennessee school systems and professionals as well.
- Tennessee Center for Decision Making Support
- Statewide resource for supported-decision making, guardianship, conservatorship, etc
Therapy Places
Note: These are places that I’ve personally been to and had overall positive experiences with. That may not be the case for everyone, so it’s important to pay close attention to the treatment that you (or your child if you’re a caregiver) are getting. Not every therapist is the same, and it’s important to keep an eye out for any red flags.
And again: I highly recommend avoiding Applied Behavior Analysis if possible. That said, many families feel as if they don’t have a choice. Many insurances will only cover ABA, and the ABA industry has a very heavy influence on what supports are available and covered. The lack of supports or societal concerns often leave families feeling as if they have no choice – especially when safety is involved.
Occupational and speech therapy focus on a lot of the exact same things – but professionals generally undergo more extensive training and education. Consider your needs and proceed with caution.
- Mini-Miracles Pediatric Therapy
- Occupational, Physical, Speech, Counseling, Transition to Adulthood program
- I went here for OT and PT, as well as their Transition to Adulthood program. Sometimes there is a waiting list, but it depends.
- ETSU’s Adult Speech and Language Clinic
- Speech therapy for autistic adults, traumatic brain injuries, neurocognitive disorders, etc
- Contact the department at the link above and they can provide more information.
- Note: they also have programs for young children and teens as well! There may be a waiting list, but I’m not sure.
Transportation
- Net Trans
- If you can’t drive, this is generally an inexpensive way for travel between cities. They require 24 – 72 hours notice and it’s usually only through phone calls.
- If you’re on TennCare, your insurance should pay for transportation to doctor appointments – but you have to schedule trips through your insurance. Sometimes information can get messed up, so it can be very hit-or-miss.
- As a warning: this service can be very chaotic and not always reliable – but I found that sometimes it’s better than nothing
- Para Transit
- This is specifically for people in the Johnson City area, but other cities may have similar.
- You have to fill out paperwork proving you’re disabled in order to be eligible for the program, but it’s generally a $2 fee for each trip within Johnson City. Make sure to go through all the requirements on the website.