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I have a nephew who turned 12 recently and when he was diagnosed with autism, I started researching right away. I tried everything I could to understand what’s going on in his head and how to help him. I now have a 3-year-old son who also was diagnosed with autism June 6, 2018. With my previous experience with my nephew, I thought I knew everything I needed to know to work with a child with autism. The only thing having a nephew with autism helped me with was knowing the diagnosis was probable since my son was showing similar signs that my nephew did (I’ve suspected that my son has autism for over a year now but doctors brushed it off until this year when we had a neurologist officially diagnosis him with autism). I have learned so much from my son and I want to share it.
1. People will judge you for your child’s behavior.
My son is higher functioning on the spectrum. What that means is that if you were to walk by him at a store you’d think he was your average person, but if you spend time with him you’ll see the signs. With that in mind, most bystanders will give us bad looks whenever my son has a meltdown because they think it’s a tantrum. What they don’t realize is that it’s indeed a meltdown so we’re going to comfort him, not punish him. We’ll get bad looks when we don’t get mad at him for “not listening.” What they don’t know is that it’s not that he’s not listening, he’s either not understanding or not even hearing us because he’s in his own world. You’ll sometimes see me walking around Walmart with my 50 pound 3-year-old in my arms because that’s what he needs to feel comforted. People assume that I’m being a bad parent or a pushover but really I’m doing what is best for my child. As long as you’re doing what’s best for your child don’t worry about the judgers. They don’t know your child and they never will, so it doesn’t matter.
2. Not every child with autism is the same.
Like I stated at the beginning, my nephew is also on the spectrum and he is considered high functioning as well. Even though they are both on the same side of the spectrum, they still have differences. My son is a social butterfly who will talk to anyone even though a lot of people don’t understand him. My nephew is content with just being by himself with a computer. My son said his first word at almost 2-years-old. My nephew said his first verbal word at around 3-years-old (he was doing basic sign language before that, though). Just like how no two children are the same, no two children with autism are the same. We’ve had doctors and teachers question his diagnosis because he’s too social or too smart. Children with autism can be social and smart. Yes, my son is social but he doesn’t understand emotions like the average 3-year-old. If you ask him why someone is crying, he’ll just tell you they’re crying, not that they’re sad. He also doesn’t verbalize things like the average 3-year-old. If you try to hold a conversation with him, he’ll usually just repeat what you say or go off topic extremely quickly. He has the signs of autism but he doesn’t have to fit in a box. No child with autism has to fit in a box.
3. You will have to fight for your child and that’s fine.
I had to fight with my son’s pediatrician to see a neurologist to get my son diagnosed. I was told by doctors and therapists that I’m overreacting and that my son is “just delayed” and doesn’t have autism. Finally once we got the appointment with the neurologist, he was diagnosed with autism. After that the pediatrician accepted the diagnosis but if I didn’t fight to get that appointment, my son would still be considered a “delayed child with behavioral issues.” Later I had to fight with his insurance to get him the help he needed because they considered him “too advanced” for therapy. I’m still currently going through a battle with his school to get him therapy because he is very good at passing tests without understanding the information. I’m going to continue to do so because my son deserves the best and I won’t stop until he gets the best.
4. The world will never understand your child.
My son has the hardest time sitting still. His teachers are always complaining about how he won’t sit still in his chair and how he pushes the kids in front of him in line whenever they stop. I’ve explained to the teachers ways to help him but they don’t always do what I’ve explained and I understand because they have a lot of kids to work with. I know not all of his future teachers will understand his “quirks” either. I’ve known the child for 3 years and they’ve only known him for a few months. I can’t expect them to understand him as much as I do and they probably never will. I know next year my child’s teacher will be saying, “You’re going to have an interesting year with him” to whoever his new teacher is. We only have family babysit my son and we still have to remind our family members about his little “quirks” because they don’t always get it either. When you spend every day with your child for their entire life you start to understand their little “quirks” but teachers, family members, strangers, and their future employers won’t. What we have to do is prepare our children for this world. Therapy is such an amazing tool for children with autism because they work to help children cope with a world that doesn’t understand them and probably never will understand them.
5. Your child will be your best teacher and hero.
I saw a shirt recently that says, “Some people have to wait their entire lives to meet their hero. I raised mine,” and I 100 percent agree with that quote. I know I wouldn’t be where I am today without my son and I am so happy that he is mine. Whenever things get tough, my son will give me a hug or a kiss or say he loves me and it makes my whole day better. Watching my son never give up regardless of how hard things are have taught me to never give up. I have anxiety disorder and bipolar disorder and sometimes I let my labels get the better of me but my son never lets his get the better of him. He faces it head on and works hard. There are things I thought he’d never be able to do that I’ve seen him do this year like zipper up his jacket, buckle the chest clip of his seatbelt, and take off his clothes without assistance (although he still needs help putting them on). If my son can work hard regardless of his label, then I’d be a fool to not work hard for him. Most kids look up to their parents but I look up to my son. He is my teacher and my hero.
Having your child diagnosed with autism is definitely a scary thing. Even though I was expecting the diagnosis, my heart still sank when I heard the neurologist diagnose him. I’m hoping by reading this you can see that while it is a hard experience, it is extremely rewarding. Never underestimate your child and your child can do great things.