Children with autism open our eyes and our hearts to growth, beauty and love in unexpected, marvelous and deep ways that expand our humanity. But, an autism diagnosis is a moment that stays with a parent.
Some parents might have trouble understanding what’s happening. Others may worry or have a sense of relief that there’s a name for what they’ve noticed in their child. Regardless of your emotions, there’s not a right or wrong way to feel.
According to the American Academy of Pediatrics, kids with autism often have other associated medical issues such as gastrointestinal issues, language delay or attention deficit hyperactivity disorder. Depending on where you live, your medical choices might be sparse or specialist-rich. Getting good, consistent healthcare is invaluable and establishes important baselines, routines and trust. How do you know which specialists or family doctors have the skills you and your child need? Ask those who have gone before you.
Medicaid provides services for children on the spectrum but there are simply not enough providers who accept Medicaid. Waiting lists in some states can be as long as 15 years. If Medicaid is part of your family’s life, get your child on the waiting list as soon as possible. While you wait, look into attorneys and advocates for additional support. A good advocate will ensure you have a primary role in your child’s education, regardless of the insurance plan you may or may not have.
If you don’t qualify for Medicaid, the ACA marketplace (also known as the exchange) offers affordable coverage for those who qualify. If your family has private health insurance, call to see what your benefits are so you’re prepared.
Autism is a medical diagnosis and should be covered by health insurance, but it’s not that simple. Many health insurance plans do not cover therapeutic treatment for autism. From 2005 to 2015, Autism Speaks battled within state legislatures to make sure autism treatments were covered under health insurance. Through those efforts, 47 states passed related legislation. But many of those laws address only traditional insurance programs not self-insured companies (which cover most workers), and some have been weakened by loopholes exploited by insurance companies. Make a call to find out exactly what kind of coverage you have.
Autism can feel isolating, but it doesn’t have to be. There are many autism support groups, some formal like chapters of the Autism Society of America or Autism Speaks and some unaffiliated groups of parents who have bonded in mutual support along the autism journey. Learn from others. Share your story. Find communities of support in churches, parks, restaurants and stores that have a heart and respect you and your child.
Autism is highly variable. There are a number of decades-long treatments that address autism such as Floortime, Treatment and Education of Autistic and Communication related handicapped Children (TEACCH), and the Early Start Denver Model. The most research-backed treatment is Applied Behavior Analysis (ABA) and it’s therapy based on the science of learning and behavior. It focuses on improving specific behaviors, such as social skills, communication, reading and academics as well as adaptive learning skills. It is practiced by Board Certified Behavior Analysts (BCBA) and is the most common treatment approach covered by insurance. There are less than 30,000 BCBAs in the nation, but it is a rapidly growing profession with increasingly greater access for families in need of ABA.
Make sure you have loving and qualified family, friends, or professional childcare providers who can stay with your child so you can have an established date night or occasional weekend away. Such activities are important for all parents of young children but they can be especially critical for parents with children on the spectrum. Finding people who understand your child’s needs, routines and sensitivities is vital to offering you an evening out while keeping things balanced on the home front. The important thing to remember is having an autisic child is beautiful and it’s okay to reach out for help if you need it.
Under the Individuals with Disabilities Education Act (IDEA) school districts, often in coordination with the public health office, are responsible for providing services from birth. Part C of IDEA mandates that schools conduct “Child Find” to locate children who need help. Among other things, Part C services can provide speech, occupational, physical and behavioral therapies to your child, often delivered in your home, and at no expense. It is part of the commitment of special education to assist families in having their children ready to learn by the time they start school. For help, call your local school district and request a meeting to begin the journey of getting the assistance your little one needs.
Many children with autism will grow into healthy self-sufficient adults, but some may require varying levels of support. That is why having a financial and assistance plan that looks after their long-term needs is essential. It’s tough, but having important conversations with your partner and members of your family will help your little one in the long run. If you need advice, look into Achieving a Better Life Experience (ABLE) to assist with creating a tax-advantaged savings account to pay for qualified expenses.
The bottom line is simple: This is hard and there will be challenges, but you’ve got this, mama. There will also be more beauty in this journey than you can ever imagine. The main thing to remember is that your child has you as their mother, which means they’re already doing great.