How to Connect With Parents (Locally and Worldwide) After an Autism Diagnoses

Guest post by Kristine Kenny, MSN, RN, CPN, CAS

Why is connection so important for parents after a child has received a diagnosis of autism spectrum disorder (ASD)? The Autism Research Institute states that caring for a child with autism can stress parents beyond their limits. Having some form of connection to others who have or are experiencing the same things you are can make the experience feel less isolating and crushing. Knowing that there is help for both your child, you and your family is very empowering.

ASD a lifelong disorder and does not have a cure right now. The needs for the newly diagnosed child can be placed on the parent can include physical, emotional and mental demands that you are not prepared to deal with. The journey does not have to be so harsh for parents and family. Building connections and relationships with those who can help your child, you and your family, will make things more bearable. Utilizing local, national and world wide resources are a great way to start.

How to Connect With Parents (Locally and Worldwide) After an Autism Diagnoses

Dealing with a new diagnosis of autism spectrum disorder (ASD) can be an overwhelming experience. There are many appointments, therapies and treatments to consider. The last thing you may feel like doing is making an effort to connect with others. Research shows that parents of children with autism suffer from feelings of depression, isolation and constant worry. Taking the steps to connect may take some time at first, but eventually once you make the connections, you will feel better equipped to handle the emotional challenges that may occur along this path.

Places to Connect after a Diagnosis of ASD

Before you start to make connections, keep your needs clear of what you are searching for. The act itself of reaching out to make connections takes courage and vulnerability especially during a very fragile time such as a new diagnosis. Know that there are many resources available for all ages of ASD. However, make sure you are focusing on the age of the child, your needs and your family current needs. Stay as focused as you can so you don’t start thinking too far ahead and become so overwhelmed that you shut down. Too much information can start you down a rabbit hole. Take it one day at a time.

Local

Local places to look into include your neighborhood, surrounding community and school district. Even if your child is not old enough to go to school, school districts typically have many resources to help you locally. Another great place is your local library.  Many local areas have adaptive types of activities for those with ASD such as gym classes, horseback riding and sensory friendly types of activities. Look at your local YMCA. You may be able to find support groups for parents, siblings, or social groups for your child to attend. Google: local autism support groups near me, for more ideas.

Having your child be a part of these programs with other children with ASD will help you to build your network. These local connections will become invaluable to you as you raise your child in the area that you live.  Knowing what is being offered locally will be your first step in making bonds with others who are on the same journey. These human links will open doors for you and your child that you probably never knew existed.

National

National connections to make typically involve connecting online, at least at first. The Autism Society of America is a nationwide network of affiliates that connect people to the resources that they need through education, advocacy, support, information and referrals. They have multiple chapters throughout the United States. Check to see if your area has a local chapter by following this link: Autism Society of America.

Another great national connection is Autism Speaks. It is the largest autism advocacy and research organization in United States. It sponsors autism research and conducts awareness and outreach activities aimed at families, governments and the public. The website has multiple different resources to connect you to. Here are a few that you might be interested in for a newly diagnosed child.

• Advocacy
• Autism friendly services
• Health& medical
• Recreation & community activities
• Safety
• Support groups
• Treatment and therapies.

In addition, Autism Speaks have multiple different toolkits that are free and downloadable – A great one to start with would be the: 100 Day Kit for Families of Young Children Newly Diagnosed with Autism. Another great resource that Autism Speaks website has is a personalized resource where you insert your state, life stage of your child and level of support needed. The filters will take you directly to your state and places, connections, etc. that exist in that area.  It is super user friendly and easy to use. 

International

There are thousands of autism organizations worldwide offering information, resources and services. Autism Speaks has acknowledged Action for Autism for providing their site with an international list of autism organizations from across the globe. In addition, they offer multiple different languages on their website to help those who don’t speak English.

Social Media

Social media is part of our most of our lives. One can find all kinds of groups on these outlets. Facebook, Instagram and Tic Tok are among the most popular. Some of the positive things of connecting this way is that you can do it in the privacy of your own home. You can also find good resources and helpful hints in ways to make you and your child’s life better. There are multiple support groups on Facebook that allow you to sign up and do “lives” with the owner of the group. These groups span all across the world. It is a great way to connect locally, nationally and internationally. Some cautions of the negative sides of social media is there are a lot of toxic and negative people out there. Use your own best judgment based on your personalized needs when exploring these sites for connections.

Looking for more information, you’ll enjoy these:

• How to Prepare Your Autistic Child for a Trip to the Doctors
• 5 Early Signs of Autism
• What to do When Your Child Receives An Autism Diagnosis
• How to Advocate for Your Child with Autism Spectrum Disorder (ASD) in a Medical Setting
• Sensory Needs for a Child with ASD

Key Takeaways

Regardless of how you make connections, in person or online- it really doesn’t matter. What matters is that you know that you are not alone on this journey and that many resources are available to you and your child. Understanding what resources are available to locally, nationally and internationally will help you to feel less alone, more empowered and better able to handle the demands of raising a child with ASD. As a caretaker, healthy associations will be a key part to your emotional and mental well-being. 

Kris is a mom of 3, one of whom has autism. She is a pediatric nurse, assistant nursing professor and author. When she has free time, she enjoys exercising, baking and binge watching TV series. Learn more about her at Autism Healthcare Books!