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.
Here are seven areas to cover after receiving an autism diagnosis:
1. Line up great medical care.
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.
2. Understand your insurance coverage.
3. Find a community.
4. Start support.
5. Find a good support system if you need a break.
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.
6. Contact your local school district.
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.
7. Establish a financial plan.
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.