What to Do: After a New Autism Diagnosis
Whether you are reading this article because your child has just received an autism diagnosis or you are concerned that your child may have autism, this information may be useful.
You’re in shock. It’s not supposed to be this way; this isn’t the child you dreamed of or the life you wanted. You may feel denial. “It’s not true. Not my child.” Then you may feel angry. “Why my child? Why me? It’s not fair.” Maybe you feel fear. “What do I do now? What will happen to my child as he gets older? Will my child be able to make friends, got to college, get a job, live alone, do any of the things I dreamed for him? What will happen to my child if I die? You may feel hopeless.
Your feelings are totally normal. Fear of an unknown future is frightening. We all tend to fear the unknown. If you feel guilt, remember, you did nothing to cause your child’s autism. The cause of autism is still unknown.
Reach out to family members and friends to process your feelings about the autism diagnosis. Consider connecting with an autism support group or other parents who have gone through something similar. Take all the time you need to grieve and gather your strength before moving on. You need time to grieve for the child you do not have, the child you wanted, expected, hoped for.
Now that you have an autism diagnosis and understand why your child behaves as he does, you can go out and find ways to help your child. There is a lot of information out there about autism, treatments, and assessment for a diagnosis. As a parent, the best thing you can do is learn the facts to help you make good decisions for your child. There are many reliable sources of information including Autism Society of America, the American Psychological Association, and the National Institute of Mental Health. Try to focus on reliable, well-known resources to be sure that the information you are getting is accurate.
Become an Advocate
Children with autism benefit from treatment and may need help in a variety of areas. Learn about the laws that relate to getting services in school and through public agencies. Special education law will be especially important to learn, in particular navigating the Individualized Education Plan (IEP) process. Remember, you are your child’s best advocate. They will need you to get good help for them and make sure that their needs are met in school. Wrightslaw is a great resource and they have a website with good information.
You will probably be meeting people with lots of great knowledge and experience. Keep a notepad to jot questions down on and ask when you have an opportunity. This might be questions to other parents about what they have done, questions for professionals about treatment and expected progress, or questions for schools about available services. There is a lot to learn and know, and you will find that most people are willing and eager to help you learn more.
Discuss your feelings with people you trust. Talking will help you gather strength and process the stress following the autism diagnosis. Talk with your other children, as they will likely need emotional support as well. If you are feeling hopeless, confused, or depressed, consider meeting with a professional who can guide you and offer support.