Did you or your child recently receive a diagnosis of autism spectrum disorder (ASD)? You’re not alone! According to the Centers for Disease Control and Prevention (CDC), approximately 1 in 54 children in the United States is diagnosed with ASD.
Step 1: Take Time to Process
- Acknowledge Your Emotions: It’s natural to feel overwhelmed, confused, or even relieved to have an answer. Take time to process the diagnosis.
- Reach Out for Support: Connect with trusted family members or friends. Consider joining a support group for parents of children with autism.
Step 2: Learn About Autism
- Educate Yourself: Start by reading reliable resources about autism to understand what it is and how it affects you or your child. There are lots of websites and groups which can get overwhelming. Don’t expect to become and expert over night and don’t expect to agree with them all. Each group is likely to have benefits and drawbacks. You are in charge and can decide what is best for you and/or your child. I want to empower you to make those decisions!
- Ask Questions: Write down any questions or concerns you have and discuss them with your child’s healthcare provider. Keep a notebook journal or even the notes on your phone for when random questions pop into your mind. This can often be as you’re trying to fall asleep!
Step 3: Build Your Care Team
- Find Specialists: Depending on your child’s needs, you may need to see a variety of providers including a developmental pediatrician, neurologist, psychologist, geneticist/genetic counselor, speech therapist, occupational therapist, behavioral therapist etc. Remember that it is not an emergency and you can take time to find the right team and do it gradually.
- Consider whether a genetic evaluation would be valuable: Approximately 20-25% of individuals with autism have an underlying genetic contribution to their symptoms. In fact, most people who DO have a genetic contribution will have changes made to their medical management as a result. Keep in mind a genetic result is NOT likely to truly change how someone treats autism itself. Instead, it may find that certain individuals at risk for other health problems including seizures, kidney problems, or heart issues for example. These medical issues, if identified, are what may need to be monitored based on the genetic finding. This is something that MKGenetix can help with by providing virtual genetic counseling and genetic testing.
- Therapies: Many individuals with autism benefit from therapies. Some common therapies that someone may consider include those listed below. Remember that most people don’t need all of these and even if they need more than one, you don’t have to start them all at once. This is just to give you an idea of what some of the therapy services might be
- Behavioral therapy like Applied Behavior Analysis (ABA): Focuses on changing specific behaviors.
- Speech Therapy: Helps with communication skills.
- Occupational Therapy (OT): Supports daily living skills and sensory integration.
- Physical Therapy (PT): Aids in motor skills if needed.
- Social Skills Training: Develops interpersonal skills and social interaction abilities.
- Others
Step 4: Create a Care Plan
- Early Intervention: If your child is under three years old, contact your state’s early intervention program (Click HERE for a list). Early intervention services can be helpful in building early skills. In some cases these services are provided at no charge and can be done in your own home. Each state is different so you’ll want to see what services are available in your area.
- Individualized Education Plan (IEP): For children over three, you may need to work with your local school district to create an IEP (Individualized Education Plan) that outlines your child’s educational goals and the support they need. This should include input from you as the parent to make sure the modifications are acceptable to you and so that you can suggest modifications that you know will be valuable for your child. This may include
- Assessment: An assessment of the individual’s current academic, social, behavioral, and communication skills
- Measurable Goals: Specific, realistic, and time-bound objectives targeting areas like social interaction, communication, behavior, and academics.
- Unique Services: A description of the specialized instruction and services the child will get, like speech therapy, occupational therapy, or behavioral interventions (e.g., ABA).
- Accommodations/Modifications: Adaptations to the learning environment or curriculum to help the child succeed, like preferential seating, extended time for tests, or sensory breaks.
- Behavioral Intervention Plan: If needed, a plan to address specific behavioral challenges, including positive reinforcement and crisis management strategies.
Step 5: Focus on Communication
- Understand Your Child’s Communication Style: Children with autism may communicate differently. Observe and learn how your child expresses needs and feelings. Many individuals struggle to identify emotions, facial expressions, or other cues. Find what works for you and your family.
- Use Visual Aids: This works well especially for younger children. Use visual schedules, picture cards, and other tools can help your child understand daily routines and expectations. You could consider implementing sign language as early form of communication as well regardless of whether your child has speech delays or not.
Step 6: Build a Support Network
- Connect with Other Parents: Join local or online groups for parents of children with autism to share experiences and advice. There are a list of several below.
- Respite Care: Look into respite care services to give yourself breaks when needed. It can be overwhelming so don’t forget about yourself. This of the saying, “you can’t pour from an empty cup.” Make sure you take time for yourself, fill your cup so that you can be there for your child.
Step 7: Address Behavioral Challenges
- Consistency is Often Key: Establish routines and be consistent with rules and expectations.
- Positive Reinforcement: Reward positive behaviors to encourage repetition.
- Seek Professional Help: If needed, consult with a behavioral therapist to develop strategies for managing challenging behaviors.
Step 8: Take Care of Yourself
- Self-Care: Ensure you’re taking time to rest, eat well, and do things you enjoy.
- Ask for Help: Don’t hesitate to ask family, friends, or professionals for support when you need it.
Step 9: Plan for the Future
- Financial Planning: Consider setting up a special needs trust to ensure your child is financially secure.
- Legal Considerations: Look into guardianship or power of attorney options for when your child becomes an adult if you’re concerned about them living independently. This is NOT the case for most children with autism.
Step 10: Celebrate Your Child
- Focus on Strengths: Every child with autism has unique strengths. Celebrate these and encourage your child’s interests.
- Create Happy Memories: Spend quality time together doing activities that your child enjoys.
- Give yourself some grace! You’re doing the best that you can do.
Additional Resources
Here are some additional autism support groups that offer resources, community connections, and support for families:
- Autism Network
- Website: www.autismnetwork.org
- Overview: Provides resources and support for families and individuals affected by autism, including a directory of local support groups.
- Autism Support Network
- Website: www.autismsupportnetwork.com
- Overview: An online community that connects families and individuals with autism to a network of support, information, and resources.
- Autism Research Institute (ARI)
- Website: www.autism.org
- Overview: Offers support and information through research-based resources, webinars, and connections to local support groups.
- The Arc
- Website: www.thearc.org
- Overview: Advocates for and supports individuals with intellectual and developmental disabilities, including autism. The Arc offers local chapters that provide support services and community programs.
- SPARK for Autism
- Website: www.sparkforautism.org
- Overview: A research initiative that also provides resources and a community for individuals and families affected by autism.
- The National Autistic Society (UK-based)
- Website: www.autism.org.uk
- Overview: Offers support, information, and advice for individuals and families affected by autism, with a focus on services in the UK.
- Parents Helping Parents (PHP)
- Website: www.php.com
- Overview: Provides support, resources, and advocacy for parents of children with special needs, including autism, with a focus on California-based families.
- MyAutismTeam
- Website: www.myautismteam.com
- Overview: A social network specifically for parents of children with autism, offering a platform to connect, share experiences, and find resources.
- Autistic Self Advocacy Network (ASAN)
- Website: www.autisticadvocacy.org
- Overview: An organization run by and for individuals on the autism spectrum, advocating for the rights of autistic people and providing resources and support.
- Autism Society Affiliates
- Autism Speaks
- Website: www.autismspeaks.org
- Overview: Autism Speaks is one of the largest autism advocacy organizations in the world, offering comprehensive resources, support, and information for families affected by autism. They provide toolkits, community support, research updates, and advocacy initiatives to improve the lives of individuals with autism.
- National Autism Association (NAA)
- Website: www.nationalautismassociation.org
- Overview: The National Autism Association focuses on safety, advocacy, and support for families affected by autism. The NAA provides resources on topics like wandering prevention, crisis support, and family empowerment, helping parents navigate the challenges of autism with practical tools and guidance.
- Autism Society Affiliates
- Website: http://www.autism-society.org/about-the-autism-society/affiliate-network/
- Overview: The Autism Society has affiliates across the United States that offer local support, resources, and advocacy for families affected by autism.
- Website: www.autism-society.org
- Overview: The Autism Society is a national organization dedicated to improving the lives of individuals with autism and their families through advocacy, education, and support. They offer a national helpline, local affiliates, and a wealth of resources to connect families with the services and information they need.
Citations:
- Autism Society – https://autismsociety.org/the-autism-experience/
- National Institute of Mental Health – https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd
- Centers for Disease Control and Prevention – https://www.cdc.gov/autism/about/index.html
- Sauer AK, Stanton JE, Hans S, et al. Autism Spectrum Disorders: Etiology and Pathology. In: Grabrucker AM, editor. Autism Spectrum Disorders [Internet]. Brisbane (AU): Exon Publications; 2021 Aug 20. Chapter 1. Available from: https://www.ncbi.nlm.nih.gov/books/NBK573613/
This guide provides a clear path forward, with reliable resources and support available at each step.
Warm regards,
Megan Trinkle-Knotts, MS, CGC
Certified Genetic Counselor
Founder, MKGenetix
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