Last month my son was officially diagnosed with autism.
It is something we had suspected, but it was confirmed with a visit to Beacon Assessment Center. While the visit with our therapist was helpful and gentle, it was an unforgettable day. An autism diagnosis is life changing for the child and the family. It gives you access to support, community, and resources that will help your family thrive. It also gives your family a new and unexpected label.
As we told family and friends, everyone offered support or prayers. Almost everyone had a story to share about a family member or friend diagnosed with autism. Everyone attempted to educate us or make us feel better. It was helpful to process our feelings and get the support of our family and friends. However, there were a few things I would’ve rather heard during that first week.
Here are the five things I wish someone had told me in the days after my son received his autism diagnosis.
1. Don’t blame yourself.
When doctors tell you, “There’s nothing you could’ve done to change this,” they are telling the truth. Do not go home and go down the Google rabbit hole about all things autism. If you do, you will encounter all sorts of speculation and misinformation. Similarly, don’t waste time scouring the internet for information about how autism will affect your marriage, your other children, and your family. Yes, it’s important to know that this diagnosis may change some of your family dynamics. But it can also move you forward in being the best versions of yourselves, if you let it.
2. You don’t need to become an expert on autism today.
It’s wise to become informed, but don’t rush into information overload. Begin with evidence-based resources only. When the time is right, it will be helpful to listen to other people’s stories about their children and hear what therapies have benefited them. Every story is unique, but you’re at the beginning of your journey. You don’t need to know the ins and outs of the diagnosis on day one. Just focus your efforts on processing your feelings and addressing the next set of needs.
3. Start all the paperwork as soon as possible.
The day you get your diagnosis and recommendations for treatment on paper is the first day you can make appointments and insurance adjustments. You will need to get comfortable with advocacy. Although the systems are there to help you, these systems are inundated with requests and can only do so much in a day. Give them grace, but stay on top of your deadlines and theirs. Create an organized and efficient paperwork process. Triple check yourself, because you’re human and a mom. Get comfortable asking for help, because you’re going to need it in every area.
4. It’s OK to adjust your parenting style.
You may not want to treat each of your kids differently. You don’t want one to feel singled out. Fortunately, each of our children actually needs a different parent. We cannot parent each kid the same way — it wouldn’t be fair to them, because no two kids are alike. Give yourself time to collect the right resources and space to grow where you need.
5. Your feelings are valid, but feelings aren’t permanent.
Your feelings about autism will evolve over the course of your journey. It’s OK to take your time processing this news. It’s OK to feel overwhelmed. But whenever you do feel overwhelmed, remember these two facts: You’re the exact person this kid needs support from, and you’re an amazing mother.
Welcome to the Autism community!
I’m neurodivergent and my 5 year old daughter is Autistic.
I highly recommend joining Facebook groups for 2 orgs: Raising Harts and Parents of ASD South Shore (you’re welcome from anywhere in MA)
Raising Harts hosts an open gym once a month that is so so fun. Hope to see you there!
Finding others who get it to be your network is life changing