When someone you love gets an autism diagnosis it can be overwhelming. Regardless of where on the spectrum the child falls you are looking at a new journey with lots of questions. I have never been the one to experience this but I have watched someone I love go through this and as they navigate this new world I felt unsure of how to best support them. My dear sweet nephew was recently diagnosed with autism and my sister-in-law has been kind enough to allow me to support her on this new journey. I have learned so much from her and from him and it has truly opened my eyes. Now that I have been given a better understanding of what it is like to live with a child with autism I wanted to share what I have learned. I also wanted to share some words of wisdom from her, she and her son have so much to teach us!
Be that safe haven: I know I always worry when my kids go to a house with no kids. There are so many dangers for kids that a non-parent doesn’t think of and it can be stressful. I have learned that for the parents of an autistic child this fear is the same only magnified. So ask the questions and make your home a safe haven and if a mom asks you to remove something or lock something don’t question them, instead trust they know how to keep their child safe.
Admit You Are Clueless: You can not ever understand how it feels to have a child with an autism diagnosis so don’t say things or make assumptions as though you do. Admit you do not know and allow yourself to learn and then you can be privy to a whole new perspective on life.
Make An Effort: I am very lucky in that my sister-in-law has shared with me things that can help my nephew when he gets overwhelmed and because of that I have taken to adding some items to our home that I know will be soothing and comforting to him. Making the effort means we are all more comfortable, she knows that I do what I can to make sure he has what he needs when he comes over. Just like I make sure to have snacks I know my kids friends like I make sure to have items that soothe and help around my house making my home more comfortable for him. A little effort goes a long way.
Basic Mom Needs Are the Same: All moms has some basic needs in common so offer to give mom a break, drop off dinner and offer emotional support. Parenting is hard for all of us so we need to stick together and support each other.
Here are some words of wisdom from a mom in the trenches loving a child with autism.
Things not to say when I tell you my child has autism:
1. I’m sorry
2. God wouldn’t give you anything you can’t handle
3. Are you sure? This statement is oftentimes followed with “he doesn’t look autistic” or “but he’s so smart”.
4. What caused their autism?
5. My cousins kid has autism. They do a gluten free diet. Have you tried that?
There is a lot of information out there, and many different approaches to therapy and diet. Every family is going to take a different approach since no two kids with autism are the same. If you feel you have some information to share that could be helpful try saying: “I just heard about a new approach to diet if you’d like to talk about it.”
Things to do/say:
1. Your son is so adorable! I really enjoy watching him grow! Anything that you would say about a typical child, say to a child with autism. They are much more than their diagnosis.
2. How are you? What’s new in your life? Sometimes I need just 5 minutes for myself. There are times I need to focus on things other than my child.
3. How can I help?
4. Nothing. If you don’t know what to say just listen.
What to do when you’re around a child with autism:
1. Attitude is everything. If you approach a child with autism with a warm, non judgmental attitude you will lay down the foundation for a good experience for that child. There is a particular cousin that my son has a very deep connection with. When she isn’t around and we are visiting family my son does a lot of repetitive behavior in order to soothe himself. When she is there he is transformed into a different child. He makes more eye contact, interacts with people, and is calmer. This cousin is a naturally sweet, sunny, cheerful child who puts my son at ease. Attitude can change their experience.
2. Take my safety concerns seriously. Children with autism sometimes don’t understand safety like typical kids do. My son bolts, doesn’t respond to his name, and doesn’t care if cars are zooming by. This is a horrible situation waiting to happen. If I am visiting and I ask you to close and lock your doors, it’s because my son may try to leave without a second thought. Some people seem to take my concerns as I’m being overprotective, but he would run on the highway without a second thought if given the chance.
3. Don’t be judgmental This means don’t call my child names. If he is having a meltdown don’t tell me he is manipulating me. If you don’t agree with the type of therapy we’ve decided on, or if you have strong opinions on the diet we’ve chosen, keep those opinions to yourself. If you think we are being too strict and he deserves a treat, let us make that call.
4. Include both parents when giving support. Most often it’s the mom who is the center of attention when talking about support, but both parents have as big a role in caring for their child. From the moment my husband walks in the door he enters our sons world. He is the one I lean on after a long day. He sometimes has to pick me up when I feel broken, on top of still caring for our son. He is just as important a piece as I am. Please do not forget him, and recognize his work as well.
-When talking about kids without autism, the preferred saying is typical child. Not “normal”.
-If you noticed I referred to my son as “child with autism” rather than “autistic”. Most people prefer the first because the child is still the center, not the autism. Its like saying “child with caner” rather than “cancerous child’. Many people get very offended by the wording.