As a parent whose child has been diagnosed with autism spectrum disorder (ASD), you may feel like your world has turned upside down. You may feel confused, afraid, and unsure about what to do next.
But you are not alone. Today, 1 in 36 children are diagnosed with ASD and there are many resources available to help you better understand autism.
To help you get started here are 10 things you can do now to give your child the best opportunity to thrive:
1. Start with the right perspective.
An autism diagnosis does not change who your child is or what your child can accomplish in life. It just means your child will take a different path, and you will need to adjust your parenting to help them get there.
There are many helpful resources out there, from national advocacy organizations to local parent support groups. And, there are highly effective programs to help children with autism live happy, fulfilling lives.
2. Understand and observe your child.
A big step toward understanding what your child is going through and how to best interact with your child is to learn more. Start with where your child falls on the autism spectrum and how their autism impacts them. This will be helpful as you learn more about how to best move forward with treatment options as well as how you can best communicate with your child.
You should also observe your child. For example, try to figure out why certain triggers may cause a meltdown. Learning to identify and avoid these triggers may help minimize meltdowns,
making life a little easier while you search for professional help.
As you begin to understand how your child’s mind works, you can adjust your approach to parenting to give them the best support.
3. Research therapy options.
As with other medical diagnoses, there are many perspectives on how to treat ASD. Part of your challenge will be to sort through various information sources to determine which are credible.
Start by trying to understand all the options available to you for the care and development of your child. Options may include different interventions such as speech, occupational, and applied behavior analysis (ABA) therapies.
You can also learn more about and follow autism advocacy groups, subscribe to helpful newsletters, and follow credible and helpful social media accounts. There are plenty of books, videos, and websites that can help you understand your options.
Some of the large national organizations provide a wealth of information on their websites and are worth checking out, including:
4. Become your child’s advocate.
You may find yourself filling multiple roles for your child, including care coordinator, therapist, parent, teacher, and more. But the most important role, after loving parent, will be that of your child’s advocate. Your role as an advocate will be critical throughout your child’s journey, and it will evolve over time.
You want to become familiar with the legal rights you and your child have. The sooner you understand your rights, the sooner you can become your child’s best advocate.
Familiarize yourself with terms such as IEP (Individualized Education Program), EI (Early Intervention), IDEA (Individuals with Disabilities Education Act), and FAPE (Free Appropriate Public Education).
5. Choose your path.
There are different ways to handle your child’s care and the best course will depend on your child’s unique goals and needs.
Some therapies focus on one challenge such as speech or motor skills, while others have a broader scope and are more intensive, such as ABA therapy. You should develop a good understanding of the therapies that are supported by research and recommended by credible experts.
For young children between 18 months and 6 years of age, ABA therapy has been shown in clinical studies to achieve the best results. ABA involves many techniques for understanding and changing behavior. ABA can be adapted to meet the needs of each unique child, can be provided in many different locations – at home, at school, and in the community – and teaches skills that are useful in everyday life.
Other forms of therapy that may be recommended based on your child’s unique needs include:
- Speech Therapy addresses articulation, language, social, and Alternative Augmentative Communication (AAC) skills.
- Occupational Therapy focuses on improving fine motor, gross motor, and sensory processing skills as needed for everyday activities.
- Feeding Therapy can help picky eaters enjoy a variety of foods.
As you think about therapy options, you will want to decide whether you want your child’s therapy to be in the home setting versus in a clinic. This is a personal decision, and there are benefits to both settings.
6. Take advantage of early intervention therapy.
You may have already seen or heard the term “early intervention,“ which applies to therapy support for children from 18 months to 6 years old.
Research has shown that early intervention optimizes a child’s overall development. Children who receive autism-specific care and support early are much more likely to gain essential social skills and more favorable outcomes. Because children’s brains are more malleable as toddlers, the sooner you can begin therapy the sooner their brains can develop the essential skills they need to live their best life.
7. Get financial help.
While it is true that autism care can be financially challenging for some families, there are financial resources available to you.
If you have health insurance, call your insurance provider and find out which treatments are covered.
Ask your health plan case manager for a list of in-network therapy providers in your area. Make sure you find out which providers are in-network for ABA, speech, and occupational therapy. Don’t assume that because a provider is in-network for one therapy, such as ABA, they are also in-network for other therapies, such as speech therapy.
Government resources like regional centers in California may also be available to you. Funding for child services is mandated through a United States federal law, the Individuals with Disabilities Education Act (IDEA). IDEA governs how states and public agencies provide early intervention, special education, and related services to children with disabilities.
8. Understand the resources available to you.
As previously mentioned, IDEA requires that School Districts and regional centers provide services for people with developmental disabilities, including autism. For qualified children who are under three years old, the regional centers have the responsibility for providing needed support and services through the “Early Start” program. Regional centers typically provide a variety of short and long-term services to developmentally disabled children and adults.
Once a child is three years old, school districts assume primary responsibility for providing services and education support for disabled children until their schooling is complete. You should also reach out to your school district to understand which resources will be available to you and your child once your child reaches school age.
9. Find the right therapy provider for your child and your family.
Once you’ve decided to get therapy for your child, you need to select a provider. In addition to a list from your insurance company, you can ask your pediatrician or the professional who diagnosed your child with autism for referrals. You can also get recommendations from parent support groups and community resources. Lastly, of course, you can also search online.
Create a short list based on providers that practice in your area and accept your health insurance, as well as input from trusted sources.
Click here for a list of questions to ask potential providers.
10. Join an autism family support group.
There are amazing parent groups throughout the country and most likely one in your area.
Parents Helping Parents is an example of a support group in the San Francisco Bay Area that provides information and resources for parents with special needs children. Sacramento4kids.com is a great resource in Sacramento, California. And, a great resource for families in Southern California – The Center for Autism & Neurodevelopmental Disorders. The Family Resource Centers, found in most states, provide easy access to information and assistance to support families.
To find a support group in your area, ask your pediatrician or child psychologist. You can search online for “autism support group near me.”
Click here for even more information and a downloadable PDF!
