Communities for Engaging Autism has collected resources available to parents with young children with autism. You will find our favorite organizations, trusted information sources, and books listed below. Of course, we don’t know everything out there, so let us know if you love something or someone serving families living with autism. We’ll look into it and share it here. We always make sure that resources align closely with our mission.
Information about Autism
The University of Minnesota has a wealth of information, but our favorite go-tos are:
- A synopsis of ASD with descriptions of conventional treatments as well as integrative approaches. This page from the Center for Spirituality and Healing demystifies treatments and references the research (or lack thereof) behind them.
- The Center for Community Integration has a fact sheet and a report that may help families navigating autism to better understand their experiences in a broader context.
Evidence-Based Interventions: Report take-aways forthcoming.
Noticing Differences and Following Through
MN Act Early and Help Me Grow MN have great information for parents and educators who may be noticing but unsure of what to make of differences in how their children are growing and learning. Resources are available in several languages including Hmong and Somali and Hmoob and Spanish. MN Act Early is affiliated with the University of Minnesota and the Centers for Disease Control. Help Me Grow MN is a partnership between the following three Minnesota Departments: Education, Health, and Human Services.
Fear and doubt often lead parents to delay sharing concerns with a doctor. We grow with our children and adapt to their ways, sometimes not noticing difficulties and differences unless we see our children with siblings or with peers over time. Often, people’s well-meaning words of reassurance (i.e. “he’s just a boy”) make us think we are overreacting or reading into things. We urge you to ask questions and follow through with your observations on your child’s behalf. CEA is here to walk with you and to help you grow with your child, so please, reach out.
The National Institute of Mental Health identifies stages of evaluation for young children. They emphasize the importance of physicians listening to parent concerns and explain steps that may follow.
In-Person Parent and Family Support
Supportive relationships with people who share similar experiences can reduce isolation and help counter stress. While online platforms for sharing and connecting abound, they should supplement, not replace, face-to-face interaction with others. Authentic connections open avenues for lasting relationships. Click here for Minnesota (largely metro area) gatherings. As always, this is just a sampling. Let us know what we missed.
Lens Changers & Firsthand Insights
While the language of diagnosis, disability, and accomodations are essential for navigating many systems on behalf of our children, we encourage you to also use language that describes your child’s strengths and interests and fosters connections between you and your child and with your community.
Understanding the Spectrum (cartoon) by Rebecca Burgess illustrates the complexity of the autism spectrum through the experience of Archie, a character with autism.
Reframing Behavior: Based on the work of Ross Greene, this infographic illustrates the key idea that “kids do well if they can.” Replacing our default assumption that a child won’t do something or behave a specific way with a curious and empathetic consideration of what barriers might be getting in their way-why they can’t-can open up a huge space for mutual learning, trust-building, and collaboration.
Firsthand Insights: Parents and professionals close to young children with autism often find the insights of teens and adults with ASD helpful in gaining a deeper understanding of how the child they engage with might be experiencing the world. Many individuals with autism and others in disability rights and neurodiversity movements are navigating and narrating their experiences to help broaden our thinking and make our communities more inclusive. The YouTube channel, Ask an Autistic is just one example. The topics can be wide-ranging and each individual’s experience unique, so we encourage a measured approach, taking time to listen and reflect over time on what resonates with your situation.
Tools for Families
Family priorities: Sometimes everything seems urgent, but our energy is limited. Here’s a tool to help you organize and prioritize. As discussed on the Oxygen Mask Podcast, visuals are good for grown-ups too and help get kids involved in family decisions!
Books for Parents
Buy these books through AmazonSmile and CEA gets a donation. How easy is that?
Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm is a great place to start. It shifts perspectives on the most common “myths” about children on the autism spectrum. And bonus, it’s an easy read.
Early Intervention and Autism by James Ball, MD is packed with all the information you need to get started in supporting your child with autism. The information is good and thorough but very accessible. Refreshing when your head is swirling with new acronyms like IEP, PDD, ABA, RDI.
A Practical Guide to Autism: What Every Parent, Family Member, and Teacher Needs to Know by Fred Volkmar and Lisa Wiesner looks overwhelming because it is so thick. But don’t pass it by. It’s so thick because it covers everything you need to know from birth through adulthood. Truly comprehensive , it is co-written by Volkmar, one of the leading researchers in autism spectrum disorder, and his wife who is a pediatrician. Yet, you would never know the authors are so wicked smart. They steer clear of jargon and explain complicated research in a straight forward manner. Every parent should have this in their autism library. You’ll reference it for years and years.
Talkability by Fern Sussman is so practical and so parent friendly! Giving parents strategies to develop language (both verbal and nonverbal) in their kids in every day moments, this book will be well-loved and tattered by the time you no longer need it. And that’s the beauty of it. The strategies are so natural and realistic, you’ll find yourself doing them all the time, without even realizing it. And life becomes a little bit easier, for you and your child.
Just Take a Bite! by Lorie Ernsperger provides pracitical solutions to a common problem with kids on the spectrum. Refusing to eat, eating only specific things presented in specific ways, behavior issues stemming from food, this stress is only second to the sleep thing, right? So get some help. An invaluable resource to ease a major parenting struggle.
New Social Story Book by Carol Gray gets you started on being a social story pro! Don’t know what a social story is? You will. An invaluable tool for explaining and inspiring appropriate behaviors, reducing anxiety, and defining social expectations.
No More Meltdowns! by Jed Baker addresses one of the most stressful aspects of parenting a child on the spectrum. Broken down into easily digestable chapters, this book is a wonderful guide to diffusing meltdowns. But more importantly it helps you avoid them all together.
Sleep Better! by Vincent Mark Durand finally gives some guidance to parents of children with special needs on how to address sleep issues. We also highly recommend the Indigo Dreams CD’s and books for guided relaxation for kids on the spectrum. Chose the ones that you think your child will connect with.
When My Worries Get too Big by Kari Dunn Buron helps kids on the spectrum and their parents develop specific strategies for managing anxiety. Sitting down with your child and completing this workbook opens up new understanding about what triggers their anxiety and also what calms them. You may be surprised at what you discover.
The Incredible 5 Point Scale by Kari Dunn Buron gives you a simple and visual strategy for managing all kinds of behaviors. It is easily adaptable to voice modulation, anger, anxiety, activity level, any areas needing attention. Plus it gives you a system for talking about behavior that is nonjudgemental and inclusive of your child on the spectrum. Invaluable tool.
Just Give Him the Whale! by Patrick Schwartz and Paula Kluth should be handed over to your child’s teacher. Read it first, so you know what is possible. Every child deserves to be in an educational environment that plays to their strengths and this book teaches teachers how to do just that for kids on the spectrum.