"I think your son may need to be tested for autism" she said. My husband and I sat there for a moment, not knowing what to say. This was supposed to be a routine meeting with our son's preschool teacher. We weren't prepared for this bombshell.
To say that we were completely unsuspecting would be a lie, though. He was over three years old at the time and still was non-verbal. He'd already been through at-home therapy and several months in a preschool meant for children with developmental needs.
"He'll outgrow it... "
"He's just sensory-seeking... "
"He's just mechanical... "
All those things may be true, but there was more to it than that.
After several months, they sent home the paperwork. There it was in print-our son is autistic. We read and reread the evaluation many times. Again, not much of it was a surprise, but it was confirmed.
As helpful as the school system is, there are still so many unanswered questions.
It's been just a few months, but I've learned so much. There are so many things I wish I could go back and tell myself after we first received our diagnosis. Below are the top ten.
Stop comparing and accept
Before the diagnosis, I felt so much anxiety over the realization that he wasn't meeting certain milestones. Now when I catch myself doing this, I am learning to stop. While it's important to monitor your child's development, realize that a child on the spectrum is going to do things differently, just like with any child. Comparing and stressing about every unmet milestone is only going cause stress and that's not going to help you or your child. Relax and accept. Do as much as you can for your child but stop comparing and just help your child develop on his or her own scale.
Be confident that you know your child.
Well-meaning friends and relatives may have birthday parties in loud places, want to take your child to a noisy and crowded event, or invite you to an event or environment that you don't think is a good fit. At first, it may be difficult for them to understand why you don't want to participate, and you may feel guilty about saying "no".
It's OK to do this. Your child is top priority. There's nothing more important than their safety or well-being. You know your child better than anyone else does. Just because someone wants to try to tell you "Oh... it'll be OK! You did this when you were their age!" doesn't mean it's right or safe for your child.
Maybe your child has a tendency to dart! Maybe they're sensitive to loud noises! You should feel comfortable making decisions to protect them from a bad situation.
Safety Trackers
Speaking of darting, autistic children are at risk for this as well as elopement from the home.
There are organizations such as Project Lifesaver and Care Tracker that may fit your child with a safety tracking device.
Do your homework and see what's available in your area. Call your local fire and police for help. If nothing else is available, there is tracking equipment available to purchase.
How to deal with others
"Why is he like that?"
"Why doesn't he talk?"
You may be surprised what you may be asked.
Keep in mind that not all questions are meant to be mean-spirited. Some people are genuinely concerned and interested but they're just not very tactful. As a parent of an autistic child, you're thrown into an unofficial (and involuntary) spokesperson role. Welcome to the family of spreading awareness and advocating for all of us.
Don't limit, you never know
I remember the first thing I thought of when we first heard his diagnosis.
"What does this mean for his future?"
No one can tell you this. And this still keeps me up at night. But what I've learned is that you can't limit your autistic child. They may be very gifted! If you limit them, you may never know this.
Who's to say what's to become of anyone's future. Don't just throw up your hands and put a label on your child. Be open-minded to the possibilities.
If they're non-verbal, they may still hear and understand you
Just because they may not make eye contact or react to what you are saying doesn't mean that they don't hear you or comprehend. And if that's the case, they may not be able to express how they feel about what they're hearing.
Not to mention that one of the first words they're going to pick up on is probably going to be one that you don't want them to say. Yep... I'm speaking from experience here. Let's just say we tried to pass it off that he was saying "sheep" or "sheet"... but we know what he was saying, (my husband and I still jokingly argue about which one of us he heard it from).
Get used to unanswered questions
There's so much that even the most brilliant scientific minds still don't understand about autism.
What causes it?
Why does my child have it?
Why does he do this and not that?
The answer is that there are no answers, at least not to all of our questions. It's extremely frustrating but you can find some hope and support in community. Talk to other parents, join support groups, and keep reading or doing your own research.
Maybe someday we'll have more answers.
Learn to be patient, you'll find your groove
I've learned to wait out every phase. For example, sometimes it seems like he just won't sleep. Just about the time I'm afraid he's going to need to be put on medication, he suddenly starts sleeping again.
Just when I think I can't stand another episode of whatever TV show he's hooked on, he changes his mind and moves on to something else.
And just when I begin to worry that he'll always be non-verbal, out comes a sentence.
You'll develop a routine. It gets a little easier everyday. You'll learn more about what comforts them, what upsets them, what foods they'll eat, and what works best for your family.
Nothing has changed
He's still the same wonderful, perfect, and special little boy he has always been before the diagnosis. He's not different. The only thing that has changed is that now we know for sure.
It's not your fault
Being 38 when I gave birth, one of the first things that ran through my head after receiving the diagnosis was, "It's all my fault... "
Don't do this to yourself. It's self-defeating and draining. You're going to need your energy, so save it for something constructive. Again, no one knows what causes autism, so why blame yourself?
I hope what I've learned can help someone in some small way.
Find a support group, do some reading, and (above all) love your child. Tell them you love them as much as you can and help them to understand you are their advocate. Be their voice when they don't have one.
They are who they are and they are perfect. No diagnosis can change love.
Amy is a lifestyle blogger and children's book author. Visit her blog, Who Says?, at https://avanduyn75.wixsite.com/whosays for articles designed offer Strength, Voice, and Humor in your life.
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