What Autism Has Taught Me

I am not the same person I used to be. We change. We bend. We mold to the life that we are given. I’d like to hope we learn, but sometimes it feels like one step forward and two steps back. I have accepted that is ok. Autism has changed me. There is no doubt in my mind. I’d like to believe I am wiser, but I’ll let you be the judge. Here are a few things that I have learned from autism.

The life I was given has nothing to do with the life I deserve. I struggle with this A LOT. I constantly compare myself and my life to others and I can’t help but wonder why I was dealt this hand. Why am I raising an autistic child? What did I do to deserve this? The truth is that it has nothing to do with deserving anything. There isn’t a rating scale that is used to determine your fate. There is no magic threshold that we need to meet in order for good things to start happening. The truth is that the grass is often greener on the other side. We all have struggles and we all face hard times. The neighbor who you think has it all together is struggling. The lady at the grocery store whose cart is full of everything healthy and organic is struggling. But we choose to grit our teeth and dig deep and fight for the life we want. The truth is we don’t deserve anything on this earth. I often laugh at the words of my five year old when she comes home from school. Kindergarten has taught her “you get what you get and you don’t get upset.” This is my new philosophy.

The word “normal” stings. Webster’s dictionary defines normal as “usual or ordinary: not strange.” When people use the word normal by default it makes others fall into the “abnormal” category. Now don’t get me wrong I understand the reference to “normal” but it hurts a bit to think that my child is classified as abnormal. Who even sets the definition of what “normal” should look like anyway? We’ve all got our quirks and ordinary is boring.

I cannot make it through life alone. When you are raising an autistic child or any child with special needs you better get yourself a support group. Find friends. Lean on family. These people are like gold. They will be there for you on days when you feel like the world is caving in. They will listen even when they don’t understand. They will drink wine with you. They will laugh with you. They will cry with you.

Intelligence is not measured by a mark on a test or a grade on a report card. Your success in life will not be determined if you go to University. The number one indicator of continuing on from first year university to second year is EQ not IQ. Brains don’t mean you will make it in life. My child has pockets of brilliance and moments that make you wonder what’s going on inside her head. She struggles in school. She doesn’t bring home a report card full of A’s. I’ve had to reflect on what is important to me in life. What will be important to her in life? What will bring her happiness? What will bring her success? What does “success” even look like? I want her to fit in socially. I want her to have friends and to be liked by others. I want her to understand relationships. These are the things that will ensure her happiness. Not a degree. Not a job. Not a mark on a report card.

Communication is so much more than talking. One of the characteristics of autism is a delay in verbal and/or nonverbal communication. I had such a narrow vision of autism. When I thought of autism I pictured a nonverbal child. My child developed language and met all the developmental milestones right on time. But she missed so much because communication involves more than stringing two words together and then forming sentences. Communication is eye contact and facial expressions. It is a reciprocal conversation. It is picking up on body language and social cues. It is understanding that the thoughts that go on in your head are not heard by others. An autistic child can learn a language but still be developmentally delayed in their ability to communicate.

One can never own too many water bottles. We have a cupboard full. It is a bit obsessive but she likes to collect them. I don’t even think she uses them all but she finds pretty ones that she likes and insists on adding them to her collection. This is autism. I can’t help but laugh. I’m a bit of a collector myself!

Even and fair are two different things. Different children have different capabilities.. Every child requires different things to be successful. Our job as parents is to push our children to grow and to give them the tools that they require to be successful. Sometimes my 5 year old requires less “tools” than my 11 year old with autism. I can’t always apply the same rules to every child and expect that they are capable. Fair means you are entitled to what you need to be successful. That requires accommodating the needs and the abilities of the child. Only when we do that are we being fair.

Love doesn’t always come easy. This is a tough one. To love unconditionally is hard. Autism is hard to love some days. It gets out of bed angry and demanding. It doesn’t hug you and thank you for everything you do. Sometimes it hurts you. Sometimes it makes you cry. Sometimes you wish it didn’t exist. I don’t love autism, but I do love my child. Even though the two are bound together I sometimes need to separate them. Otherwise I start to feel guilty that those feelings I have about autism are seeping out and the line is getting blurred. At the end of the day I accept autism as a part of our life and I love my child.

This is what I know today. In a year I might know more or I might know less. I might change the way I feel about some of the things that I wrote. Life has this crazy way of changing us. It throws us curveballs and forces us to react. We learn and we grow. Sometimes those two steps backwards can teach us more than two steps forwards. Sometimes we missed something the first time around so we have to go back so we can learn what we were meant to learn in the first place. Life is not a race to the finish line. It is a wet muddy hill on a rainy day. It is a meandering river. It is the ocean tide moving in and out wrecking your sandcastle and leaving a fresh slate. It is the sun setting and then rising on a new day bringing light to things you didn’t see yesterday. Life will teach you things. Life will change you. If you let it.

Does a Diagnosis Make a Difference?

We struggled for years with autism. Only we didn’t know it was autism. As a parent I tried everything. I did all the right things. I saw all the right specialists and read all the right parenting books. I changed my parenting methods time and time again. I naturally have a softer parenting style. I believe more in positive reinforcement than punishment. But that clearly wasn’t working so I tried being tougher and firmer. Still everything I did seemed to be wrong. I seemed to be failing as a parent because my child looked like a disobedient child. She looked like a child who was out of control. She looked like a child whose parent needed some serious parenting classes. 

It’s tough being the parent of the child who runs screaming down the halls at school. It’s tough to look at the parent of the child who your child bit as you wait outside their class. You feel shame. You feel self-doubt. You feel like a crappy parent. You start walking with your head down. It’s easier to avoid the eyes. It’s easier to avoid the judgment. I used to be so thankful that I had an older daughter who was a neurotypical child. She was never in trouble in school. She always got good grades. She had friends and played sports and was on the leadership team. I was thankful for her because it took a bit of blame off of me. See…….look at her…..I can do this thing called parenting. I’ve done something right. I’ve raised one human being successfully. 

So now we know. We have a diagnosis. We have a name to put to the struggles we have been facing for years. And I ask myself does it make a difference? It doesn’t change my child and her struggles. We now just know why. It adds some clarity. She always looked like she was defiant and trying to control situations. When plans changed she had a temper tantrum. She fought and kicked and screamed, not because she was trying to get her own way, but because her brain thrives off of order and predictability. When the schedule changes she gets very stuck and can’t reorder her thought processes to adapt to the change. She is rigid and inflexible. This actually isn’t defiance at all. She is easily overstimulated. The lights could be too bright. The sound of someone breathing could fill her entire brain and drown out any other noise. She could become so hyper focused on one thing that she often missed the instructions. So when it became time to complete a task she was lost. But this didn’t happen all the time. She is smart. At times she could pull out moments of brilliance. These moments made you question her abilities. Was she simply choosing when to show them? Was she being manipulative? She was social, but she didn’t really have any friends. She wanted to have friends and could make friends, but maintaining a friendship was difficult. Sometimes she was mean and hurtful. Sometimes she yelled at her friends and called them names. Sometimes she bit them. Was she a bully? 

Now we know. She isn’t controlling or manipulative or stupid or a bully. She is autistic. The trouble is that she doesn’t wear a label that says she has autism. So to many people she still looks like the defiant child. And I still look like the parent who is failing. A diagnosis doesn’t change that. It does not change the way that people will always look at her and make judgments. It does not change the way people will look at me and make judgments. People don’t understand autism and quite frankly I don’t expect them to. I’ve spend hours upon hours reading about it and learning about it. I’ve been trying to learn how it presents itself in MY CHILD, because autism doesn’t look the same in everyone. It is after all a spectrum. 

So if a diagnosis doesn’t change things, what would?  

The answer I think is kindness. The answer is empathy. The answer is second chances and third chances and on and on. This doesn’t just apply to autistic children. It applies to everyone. Come from a place of kindness when you see a child screaming down the hall. Yes even come from a place of kindness when another child bites your child at school. Come from a place of kindness when you see a mother dragging their child out of the grocery store. When you approach these situations with kindness you might see a perspective that you hadn’t thought of. You might be empathetic rather than annoyed. You might learn something if you take the time to listen. If you really listen to people’s struggles you might not only learn something about them, you might learn something about yourself.