Your child’s behavior seems “off,” and you wonder if they could have autism. Someone you know has been diagnosed as being on the autism spectrum, and you’d like to understand how it works.
Unfortunately, a simple search engine won’t take you to the most thorough and helpful and up-to-date autism information and research. That can lead to a feeling of frustration and overwhelm.
When we first learned that my young son is autistic, I had no idea how broad his horizons might be. Most of what I heard from people outside the professional therapy world were uninformed questions and theories about what had caused the autism – hardly helpful and often blaming. When I searched for news articles and websites, the information was either too watered down to be helpful or too fringe to be applicable.
To a parent looking for ways to help her child, useless information (“people with autism are different” – no kidding!; So and So is doing a study to see if a chemical has any correlation with autism statistics – irrelevant newsiness!; anecdotes and conspiracy theories – who has time for this?) is as unhelpful as misinformation.
Why is there so much misinformation about autism?
- When a new study is funded or published, journalists rush to inform the public. But not all studies or all results are equally important.
- The internet still favors search results by ad revenue or popularity, not necessarily accuracy.
- The result is that parents searching for information about the autistic brain can come away with a lot of information about popular fringe ideas but no meaningful knowledge of how their child’s brain is wired differently.
Where should I start and how do you know?
I’m sharing with you information I learned through reading professional texts and participating in professional conferences as part of my advocacy for my children with ASD. I’ll link some of the best, most accurate and up-to-date autism resources below. But first, let me share my approach to autism, which has helped me to get to the best information and to apply it well.
Putting Some Pieces Together
1) Complexity not simplicity
Let’s start with the brain. Autistic persons are born with (or rapidly develop in the newborn phase) too many pathways in the brain that fail to connect in meaningful ways with other parts of the brain that allow for efficient learning. All children go through a process in their toddler years, especially around 18-24 months, when the unused brain pathways are pruned. In typically developing children, the pathways that stay after the pruning make learning and coordination throughout the brain and body easier.
Austistic children are different. When their synapses prune in the 18-24 month time period, they often seem to regress or stall out. That’s because the brain pathways that they kept pay attention to objects and motions rather than people and social interactions. It’s also because their brains don’t have as many cells that help make the longest paths across the brain. There are lots of extra pathways that never quite connected to the parts of the brain they needed to go.
If a neurotypical toddler has a top of the line superspeed highway system, a toddler with autism has a lovely set of meandering cart paths with a few high-speed railroads criss-crossing the terrain.
But that’s only a starting point. The rich scenic route of autism affords amazing flexibility and ability to grow and change and learn, once a child is helped to make connections throughout their brains.
People with autism can learn that they are not alone. They can learn to participate in social customs and communication. They can even in many cases outgrow the diagnosis of ASD in terms of its delays and deficiencies.
This process is easiest when the parents and therapists and teachers understand that the child is coming from a place of too-much complexity rather than not-enough. The work is not the work of starting from scratch, but of filtering the overwhelming amount of stimuli that persons with autism struggle to process at once.
2) Difference not damage.
There’s a trend in research reported to the public to highlight potential sources of brain damage for children with autism. This is a basic misunderstanding of the autistic brain. Children with autism process the world differently, but they are not brain damaged. Approaching them as different opens us to understanding them and working to intervene in useful, whole-person ways, rather than trying to train only basic communication of needs and wants.
3)Emotions first.
Our nervous systems process emotions before we think, in what’s called a pre-cognitive process. In superhero terms, our bodies have a Spiderman-like ability to feel emotions before we recognize the cause. This pre-thinking process is still in place for children born with autism. That’s why it’s vital that they be given tools to express and process their feelings as a first course of action in therapy.
Often therapies focus on avoiding disruptive behavior by teaching children to express their basic needs. Basic needs are still important, but without the emotional filter, they are disconnected from the whole person.
Now to the links you need. The resources listed here are free, but many of them require registration.
What is autism? How can I spot it?
{Autism Navigator ASD Video Glossary}
Watch videos with side by side comparisons of neurotypical and austistic children at different stages of development. The side by side videos demonstrate real life examples of the different ways our brains work. The site also has extensive print resources. Once you register (free), you have access to the videos.
Prefer a book? For parents of young children: An Early Start for Your Child With Autism is an invaluable book resource that helps you figure out how to keep your family strong with the challenges of autism, how to help your child, and how your child’s brain works differently. It’s based on the Early Start Denver Model, one of the early interventions that often sees children outgrow their autism diagnosis by age 6 or 8. (The book link is an Amazon Affiliate link.)
What actually helps?
Evidence-based practices versus apps in the news or outdated trends.
{Evidence-Based Practices }on The National Professional Development Center for Autism Spectrum Disorder site. Find out what has been proven to work, and weigh the merits of an intervention before spending time and money on it. Ask for proven therapies in your IEP or from your providers. You can also register on the site and learn about the interventions yourself by going through video-based modules.
Some apps are helpful, but that doesn’t mean they’re the most helpful for the money or that you should seek them out as a first course. Therapies for autism are enormously expensive, and this page helps parents choose interventions that are proven to help.
If apps are particularly of interest to you, this site {PraacticalAAC}, a blog focused toward speech therapists has a {post up about helpful apps} now.
Thank you for reading and exploring these links. As a parent of three children on the autism spectrum, I know how important it is to find useful, helpful information about autism. Please Follow me on Facebook or follow this blog to learn more about autism and particularly autism in the church.
I have an Etsy shop where I offer prayer aids for families with ASD and other concrete thinkers. {Awetism Shop} Today, in honor of World Autism Awareness Day, I’m giving away a free download of a symbolated Lord’s Prayer. Click {lordsprayerPODD} to download the pdf PODD page, or download the image below.