The diagnosis of autism spectrum disorder (ASD) can feel overwhelming. Why did this happen to my child? What do we do now?
The Autism Spectrum Center at Boston Children's Hospital is dedicated to supporting you as you cope with your child's diagnosis and navigate his care. We'll make specific recommendations for therapy plans and provide guidance for accessing those therapies in your community.
Quick tips for parents and families
Challenges are part of parenting any child. If your child has ASD, you may find yourself facing some especially tough challenges. Here is some advice that many families find helpful:
- Maintain a consistent routine, both at home and at school.
- Talk to your child’s teachers and therapists to learn how you can reinforce at home the strategies they are using during the day.
- It’s perfectly OK to take breaks from therapy-related activities and allow your child free time.
- Let your child pick what she wants to do when possible.
- Talk with your provider if you need help getting support for you or your child, including counseling, behavioral services, respite, information about special needs recreation and mentoring.
- Establish a structured mealtime, offering meals and snacks at around the same time each day.
- Serve at least one food you know your child likes.
- Keep mealtime calm, and limit distractions.
- Join your child during meals.
- Allow your child to feed himself if he can.
- Follow a predictable, structured nighttime routine.
- Create a quite mood at bedtime by lowering the lights, limiting screen time and doing calming activities.
Tips for outings and special events
- Prepare your child beforehand so he knows what to expect. It may help to:
- use pictures
- use Boston Children’s “My Hospital Stories” resources
- explain, to the best of your knowledge, what will happen
- role play at home what’s going to happen
- Create a schedule for the outing and build in structured activities that your child enjoys.
- Try to keep your expectations reasonable. It may help to keep the outing short.
- Do your best to stay calm if something unexpected happens. Children can usually pick up on a parent’s anxiety.
Resources at Boston Children's Hospital
- Resource specialists: If your child is diagnosed with ASD at Boston Children's, resource specialists are available to help connect your family to resources in your community and put into action the plan that your child's medical team has recommended. Be sure to ask your team about this.
- Tips in your mailbox: Many of these practical issues are discussed in a series of email bulletins from the Boston Children’s Autism Spectrum Center, which are tailored especially for parents of children who’ve just been diagnosed with ASD. Talk to your child’s team about signing up to receive them.
- My Hospital Stories: Do you need extra help preparing your child for a hospital visit? "My Hospital Stories" is a series of more than 40 illustrated stories written to help children anticipate what to expect and to decrease their anxiety. The stories are set in different locations at the hospital and its satellite locations, and allow children and parents to “walk through” their visits and medical procedures step-by-step in an engaging, easy to understand format. “My Hospital Stories” are also available as an interactive app that allows families to add their child’s and caregivers’ names. The app can be downloaded to smartphones and tablets.
- Parent to parent: Want to talk with someone else whose child has ASD? The Autism Spectrum Center can often put you in touch with other families who have been down a similar road. We also offer a variety of family support groups—just ask your child's care team. In addition, the Center for Families at Boston Children’s offers Family to Family training. Through this program, families can mentor others just starting down the ASD path.
- Navigating Boston Children’s: Visit our general For Patients and Families site for a wealth of information on getting to Boston Children’s, accommodations and resources available to families, plus general information on preparing your child for his visit.
Education/Early Intervention guides
- The Federation for Children with Special Needs provides an extensive manual for Massachusetts residents, “A Parent's Guide to Special Education.”
- For children under 3, the Massachusetts Office of Health and Human Services provides detailed information on Early Intervention, available to families of children with developmental difficulties. Family Ties of Massachusetts manages a city-by-city listing of programs.
- If you live outside of Massachusetts, our team can direct you to helpful resources.
Other ASD resources
- The Autism Consortium, a collaboration of hospitals and research institutions in the Boston area (including Boston Children’s) offers a lot of helpful material, including a Parent Information Packet filled with practical information. The Consortium’s website also includes a list of Autism Support Centers throughout Massachusetts, plus resources in greater New England and nationally.
- Nationally, Autism Speaks offers a wide range of information and support services. Their 100 Day Kit is a comprehensive guide for families of children newly diagnosed with ASD.
- The Autism Society of America offers information and support to families and has regional chapters.
- The Centers for Disease Control and Prevention (CDC) also provides extensive information about ASD.
This is a tremendous amount of information. We encourage you not to try to read everything at once, but to look specifically at the resources that are most helpful for you now, and to return to others as you need them. We are happy to guide you.
Our coordinator will make the first available appointment based on an intake process that considers your child’s specific needs. For example, children who also have seizures may be directed to a neurologist within the Center, while children with speech, language and communication difficulties may be referred to our Autism Language Program, part of the Center for Communication Enhancement.
Appointments are available in Boston and at many Boston Children’s satellite locations to provide you and your child with care closer to home. The Call Center can help direct you.