What to Do After a New Autism Diagnosis

Your child has just been diagnosed with autism. You will have a powerful reaction to the news whether you were expecting it or not. You may cycle through anger, fear, relief, and sadness in the aftermath and feel confused. These reactions are normal and take time to process. Most of all, you may wonder what happens after a diagnosis of autism and feel pressure to take action. You and your family will feel more support if you follow a few helpful tips. 

Pause and Gather Information

An autism diagnosis brings a sense of urgency. Research has shown that early intervention in children with autism produces positive results. Still, you need to take a breath to process the news and your emotions. You should give yourself time to work through your fear and anger in privacy. Even sympathetic friends and family members can sap your energy during this challenging time. So take a few days or even weeks while you prepare for your journey. In the meantime, gather all the information about your child’s autism diagnosis that you can. Make lists of medical experts and other resources. Absorb the information before you make your next move.

Inform Others About Your Child’s ASD

When you are ready, start informing the people who need to know that you have a child diagnosed with ASD (autism spectrum disorder). If your child is in school, you need to contact their teachers and school administrators and set up a conference to discuss next steps and appropriate educational plans. You’ll also need to inform anyone who cares for your child and explain how autism may affect their communication and behavior. If your child regularly plays with other children, you may wish to discuss the situation with their parents.

You should also tell your close family members so they can help you and provide the support needed. In most cases, your family will provide the support that both you and your child need to adjust and thrive.

Research Your Role as Your Child’s Advocate

Autism resources have grown exponentially in recent years, but you will have to identify the programs and accommodations that are available and then make sure your child will benefit from the services offered. You will be their strongest advocate with educational institutions, medical specialists, insurance companies, and government programs.

These entities are not trying to make your life harder, but it can feel that way, if you do not keep and organize all the needed documentation, such as medical records, assessments, and educational treatment plans. Occasionally, you will face barriers and will need to push hard to get the services your child needs. But as a parent, you are already equipped to do that.

Ask for Help

You cannot handle this autism diagnosis on your own, so be prepared to ask for help from your loved ones and from local, state, and federal programs. Autism resources have grown exponentially in recent years, but you need to actively research and reach out to them. The diagnosing doctor should provide you with a list of resources that include:

An individualized education program (IEP) created by educational experts at your child’s school. State and federal mandates mean that your child should get special services provided in your home and/or school, including the following:

• Speech Therapy
• Behavioral Therapy (also known as ABA therapy) 
• Physical Therapy
• Social Skills Training 
• Psychiatric Services
• Developmental Therapy.

You should also look into support groups for parents and children. You might want to enroll in a parental education group as well. Don’t be overwhelmed by this list of resources. You do not have to arrange every treatment or participate in every group at once. Listen to your doctor’s advice and then build your support team from there. 

Search for Financial Assistance

Caring for a child with autism is expensive. In addition, you will want to start planning for their future as adults. Fortunately, you may qualify for substantial financial help. Some of these resources are:

• SSI/SSDI – Social Security benefits are available for some children and adults with autism. Supplemental Security Income (SSI) is sometimes available for children under the age of 18 who are diagnosed with ASD. Social Security Disability Insurance (SSDI) is a resource for adults who need help to support themselves due to a disability.
• Medicaid Waiver (Sometimes known as an Autism Waiver) – Most states provide these waivers to allow children and adults diagnosed with autism to receive the medical services and therapy they need while they remain at home.
• Housing Assistance – HUD ( Department of Housing and Urban Development) can help those diagnosed with autism and the people raising children with autism find affordable housing.
• Local Action Agencies – Depending on where you live, you may be able to get financial help from local agencies.
• ABLE Accounts – This program allows you to start a “tax-advantaged” saving plan for your child without harming your status with means-tested programs. You can use it to pay for expenses that come up along the way or keep it for your child’s adulthood.

Take Time for Joy

Remember that an autism diagnosis doesn’t mean your family life will lack joy. Your child is the same person that they always were. You should take pride in their accomplishments and celebrate all your family’s successes. And you should never forget to take care of yourself. You will need time to recharge and do things that you enjoy and make you happy. 

If you have other children, seek ways to show them attention. A parent support group can help you with that task. And finally, release yourself from guilt. You didn’t cause your child’s condition, and you will make mistakes. All parents do. A little self-love will help you cope.

How We Can Help

The Carmen B. Pingree Autism Center of Learning is the leading autism treatment center in Utah. We offer multiple educational autism programs for children ranging from toddlers to adolescents. Our treatment is designed to assist our clients by offering smaller class sizes, one-on-one time with behavior specialists, and developing communication, social, and adaptive skills.  

We understand that an autism diagnosis can rock your world, but you can work toward a new normal one step at a time. Take the time you need to adjust, ask for help, and use all the resources available. And remember, your life and your child’s life can be happy and satisfying, and we are to help.