I was just told my child has Autism, now what?

By Heather Valeo, Brain Builders April 7, 2022

As a mom of three children, I have learned that the phrase, “Expect the unexpected” should be the first thing it should say in any first time pregnancy book.  The second thing it should tell you is that this book is great for how to change a diaper but probably cannot prepare you for being up all night with the croup, random rashes, or an annual pediatrician visit that ends with a script for an Autism screening.  

 Now what?  

Your doctor just said a scary word that instantly turned your child’s future into a foggy, unattainable place. BREATHE. Turn on your phone, hit record, and ask the doctor why she or he feels you need a screening.  Digesting this news is overwhelming, so having the recording will help you process the information and share it with family.

 Ask your doctor:  

  1.  What milestones is your child missing? Discuss any changes at home that could be delaying these milestones.  
  2.  Ask for a few recommendations of who to see to perform the evaluation. Then check with your insurance to see if they are covered.
  3. Ask for a virtual appointment so you can follow up with any questions after you discuss this news with family.

If you do receive a diagnosis, your next steps depend on your child’s age.  

  • BrainBuilders (732-833-3723 ext 133) services families from time of diagnosis through adulthood. Call BrainBuilders to access autism services in your area. They provide center based full day Pre K age ABA, OT, speech program, center based social skills, full day camp experience during school breaks as well as in the summer, in home and in community ABA, and parent training. BrainBuilders services are covered by private insurance.
  • Parents of any child, from birth to three years old, can contact Early Intervention (888-653-4463) for potential in-home supports.  
  • Parents of any child age three and over can contact Project Child Find (1-800-322-8174) to access the contact in your school district to provide you information on school based programing that may include services such as speech/OT /PT if your child meets the necessary requirements. 
  • Perform Care (877-652-7624) is a statewide agency that may assist with behavioral/intellectual/developmental as well as many other issues for children that qualify under the age of 18.  If your child is 21 or older you will need to contact DDD. The NJ state website will guide you through the process to qualify and access services. 

Managing a child that is differently abled, no matter what their challenge is a marathon not a sprint. Autism is a spectrum disorder, which means it affects everyone differently! No two children are the same and no two outcomes are the same. 

  • Get a binder to put all you information in one place. This was the best advice I ever received since I am unorganized and this saved me many times! 
  • Look up parent support groups if you need it or when you are ready there are many FACEBOOK groups & blogs with parents JUST LIKE YOU! The proverbial Parent Network is an amazing thing. Other parents will give referrals, ideas, hard truths, and encouragement. Information is power! 
  • Become educated on your child’s challenges because you are the EXPERT on your child!!!  You will provide information to your team on his/her strengths and weaknesses, coping skills, supports, and personality to assist in the process of therapy goals and strategies.  
  • Partner with statewide and local agencies such as:  
  1. (Parents of Autistic Children) a statewide not for profit that educates, empowers, and embraces the entire family of child diagnosed with Autism  
  2. for educational training and support, 
  3. C.I.A.C.C of Ocean County (Children’s Inter-Agency Coordinating Council for local agencies and groups 
  4. CCYC of Ocean County(County Council for Young Children) for supports and engagement directed by the parent/community driven feedback to effect change.

Try to take it a step at a time.  Know you are doing your best and SO IS YOUR FAMILY.  Everyone copes differently, not always the way we wish or at our speed.  Don’t let a diagnosis define your child, try to look it as a tool to assist you on this journey.  Think in “snapshots” to help you stay in the moment so you can enjoy every funny, crazy moment. Remember to cherish the achievements and learn as you go.

Thank you to everyone who has taken the time to reach out be part of the special needs community in the Ocean County area.  Your support, dedication, and love for our children and families has made days manageable, dreams reachable, and a future attainable. 

Heather Valeo is a mother of three that speaks from her experience, both within her own family and as a professional.
BrainBuilders is a Therapeutic Intervention Agency providing services to children with autism spectrum related disorders. Founded jointly by a Board Certified Behavior Analyst, and a parent of a child with an autism spectrum disorder, BrainBuilders has the unique advantage of seeing every situation from the professional’s view, as well as from the perspective of a family dealing with a child in need.
BrainBuilders aims to create a place parents can turn to every step of the way as they try to get the best services for their child. We work to put together a solid therapy program, individualized for each client, addressing many areas of need. Our Therapists provide direct 1:1 ABA therapy in the home, educational facility, or place of choice.