Autism Spectrum Disorder: What I Didn't Understand About It

What I Knew About Autism Then (Or Didn’t Know)

I grew up in a close-knit church family. Every Sunday the teens rotated the responsibility of childcare.  There was a little boy in our group that demanded a red chair, a red crayon, red lollipops, and anything and everything in red. If red wasn’t available a tantrum would ensue.

As a teen, I didn’t recognize this behavior. I never even heard of Autism or PPD- NOS, I had no clue what I was experiencing except a kid who really knew what he wanted.

I recently spoke to his mother again on Facebook and I shared a story about using a motivator to get my son to school after being on a trip. She replied to me it is whatever works sometimes. Quickly, after that came.

Sometimes you have to be in the situation to understand it.

I played those words over and over in my head, though she had meant it in simple conversation it really struck a cord. She was right at that point in my life.

What I Didn’t Understand About Autism

I didn’t understand the struggle with autism until it struck me personally.

I didn’t understand the internal struggle of having to take your small child to a psychologist. I didn’t understand how it was to question and scrutinize every interaction and developmental milestone a child achieved or didn’t achieve.

I didn’t understand how some days simply surviving the day was the goal.  I didn’t understand the frustration of trying to manage work, school, therapies, other children, marriage, and trying to ensure my child still has some kind of normal childhood.

I didn’t understand what it was like to contemplate not going to restaurants, grocery stores, or socializing with friends in fear of how my child would act. I didn’t understand what it was like when strangers would stare at your child in shock at their behavior or abnormal gestures.

I didn’t understand what it was like for a mother to drag their child out of a store kicking and screaming because they wanted all the toys and they all needed to be in the right order. I didn’t understand how exhausting caring for a child with special needs could be.

I didn’t understand that the role of a mother could interchange so much from mother and advocate.

What I Know Now About ASD

Now I am in the situation, I understand exactly what she was saying.

I have been the mom that goes to Chick-Fil-A multiple times a week for french fries so I know that my son has been eating.

I have been the mom that buys the same exact shoes a size bigger so I don’t have to deal with the adjustment of new shoes. I have been the mom who cringes and dreads haircuts and nail clippings, and in return let my little boys hair and nails grow just a little too long.

I have been the mom so exhausted that I have chugged coffee to get through the day. I have been the mom who has drank too much wine and cried to my husband about how we are going to manage this.

I have been the mom that has held their child as he has screamed in a tantrum, kicking, biting, and hitting others and himself. I have been the mom who has prepped and fought through school testings and IEP meetings.

I have been the mom who has worried about my child’s future and he hasn’t even finished pre-k yet. I have been the mom who has chased their kid around the neighborhood because elopement is real.

I have been the mom carrying a 4-year-old on my hip walking around a store because his anxiety is overwhelming him. I have been the mom who has gotten overwhelming joy in watching my child play on the playground with a friend.

I have been the mom who has persevered through a year and a half of potty training and cried tears of joy when my kid finally got it.

Know A Family Dealing With Autism?

Autism can sometimes be a rough and exhausting world. It is hard to explain our chaotic world sometimes to others who don’t know.

No one child with autism is the same. Click To Tweet

Each child and families have different strength and weaknesses. There are struggles and there are great accomplishments for every family.

So if you are like the old me and you just don’t know what families are going through, there are simple ways that you can help share your support and gain understanding in the process.

Be Encouraging

Tell your friends what a great job they are doing.

Special needs parenting is hard. It is raw, brutal, and emotional.

Sometimes I just feel so overwhelmed as if I am barely keeping my head above water. A little encouragement goes a long way. When you become a parent to a child with special needs your role changes, you become their defender, their protector, and their advocate.

It is hard balancing all these titles and each title is connected to very strong emotions. “Hey that looks hard, but you are doing a great job” can mean the world to a parent as they balance these roles.

Include Us

My son likes to be a transformer, this means he will lay down on the ground, jump up and down, make noises, and pretend to be a robot, voice included. We get a lot of side eye looks.

Sometimes my son doesn’t play with others at the playground. Sometimes my son will hide in a room or under the table at family events.

He does things differently. The world just isn’t ready for different yet. Different is often scary for people, but just because it is new to you doesn’t mean you need to be scared.

Just because he likes to be alone sometimes doesn’t mean he doesn’t want to be included.

So invite us out. Ask us to coffee,  Invite us to your kids birthday parties. Offer us a play date with your child.

Please don’t forget about us. Please don’t exclude us. Our children need to socialize and to interact. We need to socialize and interact.

If we don’t take you up on an offer, try again, and again. Sometimes we have bad days. Just maybe you will invite us on a good day. Just maybe you will invite us when we need it most.

Ask Questions

If you see my son on the ground jumping up and down like a transformer or if you see him flipping his hands and waving them around. Ask me what he is doing so you understand. Let me tell you that he is stimming and it helps with his anxiety.

When you see him lining his toys up one by one, ask me what he is doing. Once you know that then it won’t seem so strange to you.

Ask us how autism affects our lives. Ask us about his triggers. Ask us about autism. Ask us so you are aware and more accepting.

Ask us about our recent milestones. We want to share the joy of our kid’s accomplishments too, even if they are delayed.

Be Supportive

If you are close to a family, offer some support.  Maybe babysit one night so the parents could have a date.  Bring your friend a coffee and just let her vent, sometimes autism can feel like an isolating world.

Offer to drop off a meal, free up some time for the family so they can just relax, many parents of autistic children are always on guard, looking for something that could trigger their child.

Listen to us, let us vent, give us a supportive ear, even if you don’t get it.

Ask specifically what you can do to support their family. Just being there can be one of the biggest gifts ever.

Is There Autism In Your Family?

Now if you are very much like me in our current situation. You know the struggles and the joys of autism. Autism touches your life personally every day.

Let me first off say, You are strong, you are brave, and you are doing an amazing job.

Just when you think you can’t do it anymore you reach deep down inside and you pull out this unwavering strength and you walk forward one step at a time. You are a warrior.

What can you do for this community?

Reach Out

Connect with other parents who are in your situation. Support each other. Share your struggles, your joys, what’s working for your family, seek advice, and keep pushing through.

Stay strong and know when to ask for help. It is so hard to do it all, it is almost impossible, reach out for support.

Educate

Your friends and your family regarding autism. Educate your employers, your church, your restaurants, and your barbers. Educate when you have the chance to so our community can fight for acceptance and not simply awareness.

I can’t explain how many times I have explained my child’s behavior to others. A little knowledge does go a long way. Most people have been very receptive and understanding.

Breathe

Take a couple minutes a day to be alone, regroup, and breathe. Self-care is important and often the last thing on a special needs parent’s list. I know, I personally struggle with this every day.

As a parent you are the most important person in your child’s life, they need you healthy, together, and mentally there for them. Breathe, start with taking five minutes just to yourself a day. The saying that you can’t pour from an empty cup is very true.

When I talked to that small boy’s mother I was inspired, hopeful, and encouraged. I didn’t know at the moment that I really needed to hear some of her advice and struggles. She provided me with support at the most perfect time. The most beautiful thing she said to me was “we made it through.”

Together we can all make it through.

More about autism:

9 Early Signs of Autism in Toddlers and Babies: Signs I Missed as a Mother

The Autism Diagnosis: Why I Took So Long To Accept My Son’s

Leave a comment below with some things about autism that you didn’t know or maybe recently learned.