“I think your son may need to be tested for autism,” he 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 were not prepared for this bombshell.
However, to say that we were completely unprepared would be a lie. She was over three years old at the time and still not speaking. She had already been through home therapy and several months in a preschool for children with developmental needs.
“He’ll get over it…”
“He only seeks the senses…”
“He’s just a mechanic…”
All of those things may be true, but there was more to it than that.
After several months, they feel at home with the paperwork. There it was printed: our son is autistic. We read and reread the evaluation many times. Once again, it was not a big surprise, but it was confirmed.
As helpful as the school system is, there are still many unanswered questions.
It’s only been a few months, but I’ve learned a lot. 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 a lot of anxiety realizing that I was not reaching certain milestones. Now when I catch myself doing this, I’m learning to stop. While it is important to monitor your child’s development, keep in mind that a child on the spectrum will do things differently, just like any other child. Comparing and stressing over every missed milestone will only cause stress and that won’t help you or your child. Relax and accept. Do all you can for your child, but stop comparing and just help your child develop on their own scale.
- Rest assured that you know your child.
Well-meaning friends and family may have birthday parties in noisy places, want to take your child to a loud and crowded event, or invite you to an event or environment that you don’t think is appropriate. At first, it may be hard for them to understand why you don’t want to participate, and you may feel guilty for saying “no.”
It’s okay to do this. Your child is the top priority. There is nothing more important than her safety or well-being. You know your child better than anyone. Just because someone wants to try to tell you “Oh…everything will be fine! You did this when you were their age!” it does not mean that it is right or safe for your child.
Perhaps your child has a tendency to dart! Perhaps they are sensitive to loud noises! You should feel comfortable making decisions to protect them from a bad situation.
- security trackers
Speaking of darts, autistic children are at risk of this, as well as running away from home.
There are organizations like Project Lifesaver and Care Tracker that can 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, tracking equipment is available for purchase.
- how to deal with others
“Why is it like this?”
“Because he does not speak?”
You may be surprised at what may be asked of you.
Please note that not all questions are petty. Some people are genuinely concerned and interested, but not very tactful. As the parent of an autistic child, you find yourself in the role of unofficial (and involuntary) spokesperson. Welcome to the family of spreading awareness and advocating for all of us.
- Don’t limit, you never know
I remember my first thought when we first heard your diagnosis.
“What does this mean for your 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 can be very gifted! If you limit them, you may never know.
Who can say what will happen to anyone’s future. Don’t just put your hands up and label your child. Have an open mind to the possibilities.
- If they are nonverbal, they can still hear and understand you.
Just because they don’t make eye contact or react to what you say doesn’t mean they don’t hear or understand you. And if that’s the case, they may not be able to express how they feel about what they’re hearing.
Not to mention, one of the first words they’ll pick up will probably be one you don’t want them to say. Yes… I’m speaking from experience here. Let’s say we tried to pass off that he was saying “sheep” or “sheet”…but we know what he was saying (my husband and I still jokingly argue over which one of us heard him).
- Get used to unanswered questions
There is so much that even the brightest scientific minds still don’t understand about autism.
What causes it?
Why does my son 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 the community. Talk to other parents, join support groups, and keep reading or researching on your own.
Perhaps one day we will have more answers.
- Learn to be patient, you will find your rhythm
I have learned to wait for each phase. For example, sometimes it seems like he just doesn’t want to sleep. Just when I’m afraid he’s going to need medication, he suddenly starts to fall asleep again.
Just when I think I can’t take another episode of whatever TV show I’m hooked on, he changes his mind and moves on to something else.
And just when I start to worry that it will always be non-verbal, a sentence comes out.
You will develop a routine. Every day is a little easier. You’ll learn more about what comforts them, what annoys them, what foods they’ll eat, and what works best for your family.
- Nothing has changed
He is still the same wonderful, perfect, special child that he always was before the diagnosis. He is no different. The only thing that has changed is that we now know for sure.
- It’s not your fault
Being 38 years old when I gave birth, one of the first things that crossed my mind after receiving the diagnosis was: “It’s all my fault…”
Don’t do this to yourself. It is counterproductive and exhausting. 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 that what I have learned can help someone in some way.
Find a support group, do some reading, and (most of all) love your child. Tell them that you love them as much as you can and help them understand that you are their advocate. Be their voice when they don’t have it.
They are who they are and they are perfect. No diagnosis can change love.