Top 10 Knowledge I Wish I Had After Learning That My Son Is Autistic
“I think your son may need to be tested for autism” she said. Indecisive about what to say, my husband and I sat there for a while. With our son’s preschool teacher, this was supposed to be a routine meeting. This bombshell caught us off guard.
But it would be a lie to say we were totally unprepared. He had been non-verbal for more than three years at the time. He had already undergone home therapy and spent a number of months in a preschool for kids with special needs.
“He’ll outgrow it… “
“Just a sensory seeker, that’s all… “
“He’s just a machine.. “
Those things may all be true, but there was more at play.
They sent home the paperwork following several months. Our son has autism, and there it was in writing. We read the evaluation several times. Again, not much of it was unexpected, but it was confirmed.
Despite how useful the educational system is, there are still a lot of unanswered issues.
Though it’s only been a few months, I’ve already learned so much. I wish I could go back in time and give myself so many different pieces of advice after we first learned of our diagnosis. Here are the top ten.
- Stop comparing and accept
I was so worried that he wasn’t hitting developmental milestones before the diagnosis. I’m learning to stop doing this now when I catch myself doing it. While it’s crucial to keep an eye on your child’s growth, keep in mind that, like all children, a child on the spectrum will behave differently. Comparing and worrying about each unmet milestone will only make you and your child more anxious. Do everything you can for your child, but try not to compare. Let your child grow on his or her own terms. Remain calm and accepting.
- Be sure that you understand your child.
Your child may be invited to a loud event by well-intentioned friends and family members, or you may receive an invitation to an event or setting that you don’t feel is appropriate. 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”.
Your child is the most important thing, so you can do this. Their security and well-being are of utmost importance. Nobody knows your child as well as you do. Just because someone wants to try to tell you “You did this when you were their age, so it will be OK.” doesn’t mean it’s right or safe for your child.
Perhaps your child tends to dart a lot! Perhaps they are sensitive to loud noises! Making choices to shield them from a bad situation should feel natural to you.
- Safety Trackers
Speaking of darting, autistic kids are at risk for both that and running away from home.
You can get your child fitted with a safety tracking device through organizations like Project Lifesaver and Care Tracker.
See what’s available in your area by doing some research. Make a helpline call to the police and fire departments in your area. If nothing else, tracking equipment can be bought.
- How to deal with others
“Why is he like that?”
“Why doesn’t he talk?”
What you are asked might surprise you.
Remember that not all queries are meant to be derogatory. Some individuals lack tact, despite having genuine concerns and interests. You are forced into an unofficial (and unwilling) spokesperson role as the parent of an autistic child. We are happy to have you as a member of our family of advocates.
- Don’t limit, you never know
When we first learned of his diagnosis, I can still recall my initial reaction.
“What does this imply for his future?”
Nobody can divulge this to you. And I still can’t sleep because of this. You can’t, however, limit your autistic child, I’ve come to realize. They might have extraordinary talent! If you restrict them, you might never discover this.
Who is to say what the future holds for anyone? Don’t just give up and assign your child a label. Be receptive to all of the possibilities.
- If they’re non-verbal, they may still hear and understand you
They may not look you in the eye or respond to what you say, but that doesn’t mean they aren’t listening or understanding. They might not be able to express their feelings about what they are hearing if that is the case.
Not to mention the fact that one of the first words they’ll likely hear is one you don’t want them to say. Yes, I am speaking from personal experience. 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 continue to jokingly debate which of us he heard it from).
- Get used to unanswered questions
Even the greatest scientific minds are still in the dark about a great deal of things related to autism.
What causes it?
What is its cause in my child?
Why does he do this and not that?
The answer is that, at least not to all of our questions, there are no answers. However, there is some hope and support in the community, despite how frustrating it is. As well as speaking with other parents and joining support groups, keep reading and conducting your own research.
Maybe in the future, we’ll have more solutions.
- Learn to be patient, you’ll find your groove
I’ve learned to endure each stage. For instance, at times it seems as though he simply cannot fall asleep. He starts sleeping again right when I start to worry that he will need to be given medication.
He switches to something else just as I’m about to give up on watching another episode of the TV show he’s fixated on.
And just as I start to worry that he won’t ever speak, a sentence comes out.
You’ll establish a routine. Every day, it becomes slightly simpler. You’ll discover more about what makes them feel better or worse, what foods they enjoy, and what is most suitable for your family.
- Nothing has changed
He is still the same wonderful, ideal, and unique young boy that he was before the diagnosis. He is still the same; the only thing that has changed is that we now have certainty.
- 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 subject yourself to this. It is exhausting and self-defeating. Save your energy for something productive; you’re going to need it. Again, no one is certain of the cause of autism, so why put the blame on yourself?
I hope that what I’ve learned can in some small way be of assistance to someone.
Find a support group, read some books, and—most importantly—love your child. As much as you can, let them know how much you care for them and make sure they know you are on their side. When they don’t have a voice, be it.
They are perfect as they are. Love is unaffected by any illness.