The 10 Most Important Things I Wish To Know After Learning My Child’s Autism
“I think your child may need to be tested for autism,” he said. My husband and I sat there for a moment, not knowing what to say. It was supposed to be a routine meeting with our son’s preschool teacher. We were not prepared for this bomb.
However, to say that we were completely unprepared would be a lie. He was over three years old at the time and still not speaking. He had already gone through home therapy and several months in a preschool for children with developmental needs.
“He’ll get over it …”
“Just search sensory …”
“It’s just mechanical …”
All of those things may be true, but there was more to it than that.
After several months, they are comfortable with the paperwork. There it was printed: our son is autistic. We read and reread the evaluation many times. Again, it wasn’t a huge 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 receiving our diagnosis for the first time. Below are the top ten.
- Stop comparing and accept
Before the diagnosis, I was very anxious to realize that I was not meeting certain milestones. Now when I catch myself doing this, I am learning to stop. While it is important to monitor your child’s development, keep in mind that a child on the spectrum is going to do things differently, just like with any child. Comparing and emphasizing each missed milestone will only create stress and it won’t help you or your child. Relax and accept. Do all you can for your child, but stop comparing and help your child develop on his or her 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 him to an event or setting that you don’t think is appropriate. At first, it may be difficult for them to understand why you do not want to participate, and you may feel guilty for saying “no.”
It’s okay to do this. Your child is the highest priority. There is nothing more important than your safety or well-being. You know your child better than anyone. Just because someone wants to try and tell you “Oh … everything will be fine! You did this when you were their age!” it does not mean that it is suitable or safe for your child.
Maybe your child has a tendency to throw himself! They may be sensitive to loud noises! You should feel comfortable making decisions to protect them from a bad situation.
- Security trackers
Speaking of jumping in, autistic children are at risk for this, as well as running away from home.
There are organizations like Project Lifesaver and Care Tracker that can equip your child with a safety tracking device.
Do your homework and see what is available in your area. Call your local police and fire department for help. If nothing else is available, follow-up equipment is available for purchase.
- How to deal with others
“Why is it like this?”
“Because he does not speak?”
You may be surprised what they ask you.
Keep in mind that not all questions need to be petty. Some people are genuinely concerned and interested, but they just aren’t very tactful. As the parent of an autistic child, you are assigned an unofficial (and unwitting) spokesperson role. Welcome to the family of raising awareness and defending everyone.
- Don’t limit, you never know
I remember the first thing I thought when we first heard her diagnosis.
“What does this mean for your future?”
No one can tell you this. And this still keeps me awake at night. But what I have learned is that you cannot limit your autistic child. They can be very gifted! If you limit them, you may never know.
Who can say what will happen to someone’s future. Don’t just put your hands up and tag your child. Be open-minded to the possibilities.
- If they are not verbal, they may 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 are hearing.
Not to mention, one of the first words they’ll pick up will likely be one that you don’t want them to say. Yes … I’m speaking from experience here. Let’s say we try to overlook that he was saying “sheep” or “sheet” … but we know what he was saying (my husband and I still jokingly argue over which of us heard it).
- Getting used to unanswered questions
There are so many things that even the brightest scientific minds still don’t understand about autism.
What causes it?
Why does my son have it?
Why does it do this and not that?
The answer is that there are no answers, at least not for all of our questions. It is 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.
Maybe 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 you just don’t sleep. At the moment when I am afraid that medication will be necessary, he suddenly begins to sleep 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’s always non-verbal, a sentence comes out.
You will develop a routine. Every day is a little easier. You will learn more about what comforts them, what bothers them, what foods they will eat, and what works best for your family.
- Nothing has changed
He is still the same wonderful, perfect and special child that he always was before diagnosis. Is no different. The only thing that has changed is that we now know for sure.
- It’s not your fault
When I was 38 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 are 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, read a little, 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.