When your child is diagnosed with autism, it can feel like everything changes. Even though your child is the same as he was going into the appointment, your perception of what will be changed. You’re left thinking, “My child has autism. Now what?”
As scary as the autism diagnosis can be, there are ways you can prepare your child, and your family, for success. Begin with these 8 steps:
Remember the diagnosis doesn’t change your child
Your child is the same person you’ve loved since bringing him home from the hospital. Although it might feel like things have changed when you get the diagnosis, nothing is different except that you understand your child in a new way.
Autism doesn’t define him, it helps explain how he perceives the world. The diagnosis isn’t a life sentence. It’s a guide to help you know what he’s going to need from you in order to grow into the most successful person he can be.
We all need help in different ways. We have unique strengths and challenges. Your child does as well. Encourage what he’s good at, then teach him how to complete, or accommodate, the tasks he finds challenging.Allow yourself to be upset
Telling yourself not to be upset about the diagnosis isn’t going to stop it from happening. In fact, receiving this news can trigger grief, and dealing with your emotions is an important component of coping with grief. Help Guide offers a useful guide for managing grief in Coping with Grief and Loss.
In order to heal and be able to move forward with all you will need to handle, you can’t avoid your emotions. Allow yourself to feel however you’re feeling. Go through the stages of grief, if that’s how you’re feeling. There’s nothing wrong with that.
And then get ready to help your child. Because it is so much you can do to help him succeed.Learn about autism
Although you might feel like you “know” what autism is, take the time to learn all the facts. Look for information from more than one source and understand the entire spectrum of symptoms. Work with your pediatrician and specialists to understand your child’s specific needs and challenges.
But also look for information from other sources. Autism is a spectrum and no two people experience it the same way. Therefore you should look for resources that are as diverse.
The CDC is an excellent place to find the information you can depend on. Start with What is Autism Spectrum Disorder? You can also find data and statistics as well as treatment options. Although this information is fact-based and unbiased, there are many other resources you can use for a different perspective.
We offer several free courses on our ABA Mentor site including:
What is Autism?
What is ABA?
Introduction to Applied Behavior Analysis
Autism Speaks is a nonprofit dedicated to increasing awareness of autism and providing support to those with autism and their families. They provide support directly to families through their ART (Autism Response Team). Their information about Autism is extensive and begins with What is Autism?
Our Understanding Autism page has many resources as well including:
Communication and Children with Autism
Explaining Autism to Kids
What is Nonverbal Communication?
Sensory Activities for Your Child with Autism
What You Need to Know about Autistic Tantrums
6 Strategies to Make Behavioral Change Easier
5 Reasons to Help Your Child with Autism Expand His Interests
Stereotypies and Your Child with Autism
Stages of Play and Your Child with Autism
Understanding How My Child with Autism PlaysFind support
All parents need support, but when your child has autism you need even more. You can find help when you join a parent’s group or the school PTA. You can look for groups on Meetup or talk to your child’s school or pediatrician about any groups they might be aware of. These groups will be filled with people who can offer emotional support and actionable advice. Don’t allow the diagnosis to isolate you and your child.
Additionally you can find support online. We have a Facebook group for parents where you can connect with other families who will be able to share stories, advice and support. You can ask questions and share both your struggles and your victories. For more support you can join our membership at Understanding Your Child with Autism where we will teach you step-by-step the best way to teach your child.
There are many blogs written by parents who have a child (or multiple children) with autism. Robin writes about her experiences raising children with autism in Autism in Our Nest. She has two children who are both on the spectrum. Her daughter Catelyn has High Functioning Autism. She shares Catelyn’s experience in An Interview with Catelyn. Much of her blog focuses on her son Declan. In her post, “He May Never…“ she gives parents hope as she shares how she was told Declan may never do a lot of things he’s now able to do.Research treatment options
There is no “cure” for autism (read our post Is There a Cure for Autism?). Autism is a unique way of experiencing the world. It is now your role to understand your child’s perspective and learn how to interact with him in a way that supports him the best.
There is no one-size-fits-all solution to autism. Every child is unique and will have varying needs and preferences. However, often the best treatment for autism is Applied Behavior Analysis. ABA offers tools to help you understand your child’s perspective so that you can teach him in the way that he learns best. It treats every child as the one-of-a-kind individual that he is, and aligns treatment with this understanding.
[/size][/size]Partner with your child’s school
Your child’s school should be a place where you can turn for information and support. They have resources dedicated to children with special needs and staff who are trained in this area. This is a great place to start.
Unfortunately, due to budgets and the challenge of finding high-quality staff for relatively low-paying positions, you may find your child’s school doesn’t have the resources you need. If you’re not getting the support you need from the school, try these strategies:
Meet with your child’s teacher and principal. What are their concerns? What solutions can they bring to the table? If they lack experience working with children with autism, are you able to direct them to resources and training
Consider whether your child needs a specialized learning environment. Many parents feel strongly that they want their child to remain part of the traditional classroom. However, this isn’t always the best decision. Our post The Secret to Inclusion: It’s Not What You Think! discusses the pros and cons of keeping your child in a traditional classroom.
Ask for an IEP, 504 or behavior intervention plan. The Individuals with Disabilities Education Act (IDEA) guarantees all children the right to a free public education. Our post Behavior Intervention Plan: Does Your Child Need One? explains the difference between each of these plans and points you to valuable resources where you can find more information.
Consider hiring an advocate. When all else fails, thinking about hiring someone to fight with the school on your behalf, if you can afford to. Read When Parents & Schools Disagree by Ruth Heitin, Ph.D., Educational Consultant for more on special education advocacy.
Take care of yourself
Being a parent is a full time job with little, if any, time for taking care of yourself. Children with autism often require even more attention than other children. And due to sleep problems often the precious time in the middle of the night gets interrupted. Yet taking time for yourself will make you a better parent. Taking care of yourself isn’t selfish. It’s necessary.
But how can you possibly manage this? Trying to arrange a break might feel like more effort than it’s worth. However once it becomes part of your routine it will be easier. Here are some strategies to get you started:
1.Divide and conquer
2.Find a babysitter
Let’s look at how this can work:
Divide and Conquer
If you’re married, give your spouse one night every other week to go do something he or she enjoys, whether it be taking a walk, seeing friends, going to the library, watching a movie or anything else. On alternate weeks, you can get a night to do the same. This can be done on a smaller scale by taking turns with other routines, like bedtime. Just be sure you’re using the time for yourself – and not the dishes.
Find a Babysitter
When family and friends offer to babysit, take them up on it even if it’s just a few hours. You may be tempted to say no for a variety of reasons but chances are these people honestly want to help and you can give them a gift by letting them. You may need to teach them how to be with your child, and there may be teary goodbyes as your child gets used to you leaving, but you will all be better off for it.
If you have more than one child, consider finding activities for your children to do together. Depending on temperament and age this might require some initial investment on your part, but in the end, you will end up with a more peaceful home and children who are closer to each other. Read our post Activities for Siblings to Do Together for ideas. Also, read our post How Can Siblings Be Included in the Care of Children with Autism? before using siblings to free up your time.
By Amelia Dalphonse