Dear Mom (and Dad),
Your child was just diagnosed with autism and you’re overwhelmed. You might have spent hours or even days in hopes of getting answers but somehow you have more questions now than before.
You have pages of information and recommendations from specialists who gave your child the autism diagnosis. Where do you start? What do you do? How do you handle the emotions you’re feeling? What’s right or wrong?
11 Things to Remember With Your Child’s Autism Diagnosis
#1 You don’t have to figure it all out today.
It breaks your heart to see your child suffer and you might feel the urgency to figure “it” all out now. If there’s something that could help her, shouldn’t you try it right away?
It helps to look at autism as a journey. Pace yourself because you’ll be on this road for the long haul. Sprinting right from the start might be tempting – and chances are you will from time to time – but it’s the fastest way to burn yourself out.
#2 Give yourself time to absorb all this new information.
You’ve probably been thrown a lot all at once from the specialist who gave you the autism diagnosis. You might have prescriptions to fill, tests to arrange, therapists to see, and more.
It can be very overwhelming.
You do NOT have to do it all today or tomorrow or even this week.
Pace yourself and take one step at a time. You deserve it and will NEED to.
#3 Allow yourself to grieve or process emotions.
It’s okay to feel the way you’re feeling. There is no right or wrong way to process an autism diagnosis. Everyone does it differently.
Perhaps you’re excited and ready to jump in with the new information presented to you.
Or you might feel crushed and hopeless. You might feel angry that this autism diagnosis has been handed to you. (After all, no one hopes and dreams that their child will be the one to have autism.)
You might feel jealous of other moms who don’t have this tremendous challenge in their life. It’s okay to feel all those things. Give yourself time to feel and even grieve.
#4 Trust your instincts.
You always have and always will know and love your child more than anyone else. Doctors, specialists, therapists, etc. can give you recommendations, but you get to have the final say.
If you’re feeling pressured to do something that doesn’t feel right with you, perhaps you need to switch to a new doctor or therapist. The best team will work with you, not against you. And most of all, the goal should always be to have your child’s best interests in mind.
#5 Your Child Hasn’t Changed
Remember your child is still the same person he or she was before the diagnosis.
While it can bring a rush of emotions, try to look at this new “label” as a way to get additional help for your child. You don’t have to treat him or her any differently.
Your child’s diagnosis doesn’t define him or her. He or she is still the amazing individual they were meant to be. You can look at the diagnosis as a way to give you – and others – insight to your child.
#6 Your child is still an individual.
Just because something worked for someone else, doesn’t mean it will for your child and that’s okay. The same is true for the reverse.
#7 When/How to Tell People
Take your time and decide what and how much (or how little) you want to tell people.
Some people post on Facebook as a way to share the news so others will hopefully understand too.
Others are more private about it, preferring not to shout an autism diagnosis from the rooftop.
You get to decide when and how. Take your time; there is no rush.
#8 Surround yourself with people who are supportive.
Drop or take a break from those who aren’t. You don’t need negativity in your life right now, you need love and support.
Got a family member who refuses to accept your child’s diagnosis? Take a break from him or her. If you’re like many autism moms and feeling very alone, please join my Autism Moms Living Well Facebook group. This is a caring no-judgment community of moms who get “it.” Many moms have commented that it’s the best Facebook group they’ve ever joined.
#9 Autism is not a life sentence.
An autism diagnosis doesn’t mean your son is doomed to live at home for the rest of his (your) life! There is still so much potential for him.
No one knows what the future holds, but there is no reason to believe your child can’t grow up and live a fulfilling life. In fact, short of multiple other diagnosis and challenges, I would encourage you to find a new doctor if all they’re giving you is a grim outlook.
Because autism doesn’t mean there is no hope.
In fact, now armed with more information and ideas to try, you may even be able to unlock the door that will offer your child an amazing life!
#10 Never give up.
Don’t let closed doors stop you.
There are so many things you can do to help your child, far more than just ABA therapy. Many doctors present ABA therapy as the “fix-all” and when you’re suddenly faced with a 2-year waiting list or an insurance company refusing to cover any cost of it, you might feel like you’re failing your child.
(FYI: My own son has not had ANY therapy due to our insurance refusing to pay a penny and he is doing fine.)
ABA is just the tip of the iceberg when it comes to ways you can help your child.
The same goes with many more things you might encounter. Keep trying, look for new options, and move forward.
#11 You’re not alone.
For every time you’ve cried, every thought you’ve had, there are thousands more autism moms who have thought or done the same things as you and equally thought they were the only ones.
You’ve got this, Mom!
Merissa Hatch says
To the Autism parents reading this,
I am a 28-year-old mom blogger/ nanny with Autism who lives in her own apartment. She is right, you don’t have to have it all figured out. Think of Autism as a different way of being in the world. Your child was born on the wrong planet. His/ her planet is full of people just like him/her. Your job is to help your child learn about how to communicate with the Earthlings and find their tribe of the other people.
One of the hardest parts about being Autistic is the way the rest of the world treats us. They change plans randomly without regard for us, tease us for being weird and ignore our needs because they say, “you have the problem, so I shouldn’t have to change anything.” They let us do 80% of the work and still tell us it isn’t enough. They act like Autism is a problem that we just have to overcome on our own. Think of your personality. Would you want to ‘cure’ all of your traits? Maybe some, but not all of your personality traits. That’s what Autism is like for your child. He/she will have some things that are frustrating and that he/she doesn’t like and some Autism traits that are flippin’ awesome!
I know it’s scary since you don’t know what’s in store for you and your child. People are going to say some cruddy things to you, but they don’t know. I know it’s overwhelming. Even if it doesn’t feel like it right now, you are so blessed. Your child is going to change you for the better, I promise. Autism is as complex as any other personality. Your child may be different from what you were expecting. It’s okay to grieve what you thought you had. If I could tell parents one thing from an Autistic child’s perspective, it would be to encourage you to think of yourself as mission control and your child as a Martian. Your job is to facilitate your little Martian and help him/her understand the Earthlings.
Go, Moms! You got this!