“I live in an area without access to intensive early intervention therapies for autism. What can I do to help my child?”
Today’s “Got Questions?” answer comes from Autism Speaks Assistant Director for Dissemination Science Lauren Elder.
First, let me say that we believe that all children with autism deserve high-quality early intervention. This is why we’ve launched Autism Speaks Early Access to Care Initiative. Its goal is to reduce the persistent disparities we see in access to autism services, especially early diagnosis and intervention. Autism Speaks also continues to advocate for improved insurance coverage for autism services in every state and across North America.
Meanwhile, we know that families need help coping with inadequate access to autism services in many communities.
So to start, I’m assuming that you’ve already gotten all the services you can through your state’s early intervention program and local department of education. (Find state-by-state information on early intervention programs here.) It may be that you realize that the services provided by your community are inadequate. Or you may be in such a remote location that it’s difficult to take your child to the closest service providers.
While there’s no substitute for professional, high-quality early intervention, we know that parent involvement is critical to ensuring that children with autism achieve their potential. In other words, there’s a lot you can do to help your child.
Here’s what I recommend:
1. Learn about early intervention.
Autism Speaks has developed a wealth of tool kits for families. I encourage you to read Autism Speaks ATN/AIR-P Parent’s Guide to Applied Behavior Analysis and ATN/AIR-P An Introduction to Behavioral Health Treatments. Also see our website’s autism treatment pages for introductions to a variety of therapy approaches.
There are also many wonderful books on early intervention. I find those with practical tips and example scenarios the most helpful. Along these lines, I recommend An Early Start for Your Child with Autism. Books such as this provide ideas on how to play with your child in ways that will encourage development.
I also recommend watching early intervention videos online. The Autism Speaks Video Glossary can give you a sense of different treatment approaches and which might fit your child best. In addition, I recommend this parent’s video guide from the University of Washington. It’s full of tips to help you start working with your child.
2. Develop your intervention plan.
After educating yourself, you’ll want to decide what skills you want to teach your child. It’s important to have clear and specific goals. For example, if you want your child to learn more language, your first goal might be to teach how to point or make a simple sound to request something. These basic communication skills are the building blocks for speech. Many books on specific treatments (described above) have checklists of skills and advice on how to teach them. These can help you develop your treatment plan
3. Continually improve how you teach your child new skills.
Teaching skills take time. Don’t get discouraged if you’re not seeing the progress you’d like as fast as you’d like. This is your opportunity to problem-solve and improve your teaching. Think about whether the skill you’ve chosen is at the right level for your child. It might make sense to start with something easier. Consider how motivated your child is to learn about the activity you’re using to teach a skill. Might another activity provide greater motivation? Ask a friend or family member to watch your teaching and provide constructive feedback.
4. Find ways to consult a professional.
Even if you’re too remote to visit an autism clinic, chances are you can find a way to consult with a professional autism therapist. Phone and video consultations are two options. You might even be able to send a video of you working with your child to a therapist, who can then provide feedback.
5. Engage family members, teachers and community.
Share your new knowledge with the people in your child’s life. Encourage family members, trusted friends, teaches and others to take turns working and playing with your child. It will help your child if you all try to be consistent in the way you teach skills.
6. Create a support and advocacy group.
Find other parents of children with autism in your area. We’ve watched communities in remote locations around the world develop parent networks to assist and support each other. Your local parent network can also advocate for better services in your region!
There is no easy answer when a family does not have access to affordable, high-quality autism care. I also realize that only some of my tips will be right for your family. Hopefully this gives you some ideas on ways to supplement your child’s services.
Got more questions? Send them to GotQuestions@autismspeaks.org. Subscribe to Autism Speaks Science Digest to get “Got Questions?” blogs and all our research news and perspective delivered to your inbox.