What Autism Means to Me

When my younger brother Willie was diagnosed with autism in 1990, the autism prevalence rate in the United States was approximately 3 in 10,000.

That said, we grew up in New Jersey, which had (and still has) an in-state autism rate higher than the national average. Nevertheless, my brother’s diagnosis was considered unusual.

Fast-forward to the present day, when recent government studies report an autism prevalence rate of 1 in 45 for individuals ages 3 to 17. Autism awareness has come a long way since Willie was diagnosed, but of course there’s still a lot of work to be done.

Writing about what autism means to me is a small way in which I can help to raise awareness, and I’m grateful to FirstPath Autism for inviting me to contribute. Based on my experiences, I believe:

Autism means talking about our differences and our commonalities.

When I was younger, I’d see blank looks on people’s faces when I’d say, “My brother has autism.” Hardly anyone knew what autism was back then, and I had trouble explaining the word myself.

I didn’t know much clinical language, so when people asked, “What does that word mean, autism?” I’d just say, “It means that my brother thinks and feels differently.”

Then I’d tell my friends and relatives that autism was part of why Willie needed to cover his ears in crowded rooms, part of why he liked to memorize and type out the end credits from films.

FirstPathAutism-Caroline-and-Willie.jpgMost of all, I tried to emphasize that Willie wasn’t defined by a diagnosis. Autism was never the first thing I mentioned when people asked me about my brother. Instinctively, I started using person-first language long before I learned the term for it. “Willie is smart, kind, and funny,” I’d say. “And he has autism.”

Autism means realizing that while some people hate and fear that which they don’t understand, many others are willing to learn.

Some people received Willie graciously, but others didn’t. Growing up, I remember critical stares and not-so-quiet whispers of, “What’s wrong with him?”

Nowadays, there’s much greater awareness around terms such as “autism spectrum disorder”. And though there are still some who make unkind comments and foster prejudice, I witness sensitivity and compassion more often.

As Maya Angelou says, “When you know better, you do better.” When people “know better” than to be insensitive about autism, they “do better” and choose kindness.

Autism means sharing what we know while acknowledging all that we don’t.

My friends and family members often ask me questions about autismsuch as, “What causes it, exactly?” and “What’s the difference between autism and Asperger’s Syndrome?” I welcome the questions and work toward a world in which the answers will be common knowledge.

That said, there’s much about autism that mystifies scientists and siblings alike. Autism reminds us that we know only a fraction of what the human mind can do.

As Faith Jegede said in her 2012 TED talk, What I’ve Learned From My Autistic Brothers, “… How little we know about the mind, and how wonderful the unknown must be.”

Autism means that the idea of “normal” loses its power.

When I was younger, I wanted my family to be “normal”. I wanted us to look and act just like everyone else. But having a brother on the autism spectrum meant leaving normal.

Eventually, I realized that normal is just a construct. Though most people I knew didn’t have siblings on the spectrum, no one had a cookie-cutter “normal” life. Every family has its difficulties, whether or not they involve autism.

I used to want to fit in, but special needs meant standing out. And that in itself was a strange and powerful gift. The fact that my brother was visibly different actually freed me to be myself as well.

Autism means connecting with people who “get it”.

The first time I befriended another special-needs sibling, it was a revelation. My grade-school friend Holly had a younger brother with special needs similar to Willie’s, so I could invite her over without feeling self-conscious about Willie belting out Disney songs or rewinding the same video over and over.

Around her, I didn’t have to apologize or “translate” for my brother, and it was such a relief. Fellow siblings may want to check out resources such as the Sibling Leadership Network and the Sibling Support Project to facilitate these kinds of friendships.

Autism means focusing on what really matters and letting go of what doesn’t.

To me, autism means letting go of the idea that there’s only one right way to think, feel, or love. As Tolstoy wrote in Anna Karenina, “If it is true that there are as many minds as there are heads, then there are as many kinds of love as there are hearts.”

With that in mind, all I can do is stay present, offer support, and give thanks for my specific brother. I’ll never fully understand Willie, and that’s all right. I don’t have to fully understand in order to fully love.

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Caroline Garnet McGraw is an autism sibling and a writer for FirstPath Autism. She’s also the creator of A Wish Come Clear, a personal development blog giving you carte blanche to change your life.

How ABA Therapy helped the Willey family

My husband and I were foster parents when we received Mathew from UC Davis. He was 18 months old with traumatic brain injury with partial paralysis on his left side. He wore a helmet for a year because he was missing part of his skull. At that time he could say just a couple of words, was extremely hyperactive, and very destructive. Since he couldn’t communicate he had terrible tantrums.

Those first couple of years were extremely hard. We chose to have no other children because we felt he was a danger.

The schools were no help. They didn’t know how to deal with a child like Mathew. We had to fight for physical therapy and even that was hit or miss. He went to 4 different schools during those first 4 years.

Finally, when Mathew was 5, Genesis Behavior Center (the parent company of FirstPath Autism) came into our lives; not originally to help Mathew, but to teach me. Luckily, someone saw his great needs, and through that person we got an advocate who helped us get Genesis’s services for Mathew. That is when our lives finally started to improve.

Through FirstPath we learned about Applied Behavior Analysis (ABA)

Through ABA techniques, we taught Mathew to eat with utensils. He started learning how to speak. He finally became potty trained at 10. We never thought that would happen.

Mathew is now 14.  Because of his severe brain damage, Doctors didn’t think Mathew could say more than a few words; however, he’s now reading 2nd grade level and starting to learn to write. You can even have a full conversation with him.

Most children with his diagnosis don’t survive, but he did. Very few people have ever dealt with a child like Mathew, but FirstPath never gave up on him or us. They worked to find a solution to his problem, brain stormed, and went out of their way to figure it out. They have never given up on him or us; and neither will we.

Mathew still has a long way to go

We have no idea what his potential is, but we have never limited him and neither has FirstPath. They have been with us for every new hurdle and will continue to be part of our lives. We could not have done this without them or their ABA treatment and I thank God for bringing FirstPath into our lives.

How ABA reinforcement at home helped one family

his guest post was written by Shirley Nutt whose son, Wyatt, was diagnosed at age 5. Wyatt was treated by our FirstPath Autism Founder, Romey Kiryakous and her team at the Genesis Behavior Center.

My son was five years old when diagnosed.  We had no idea what to do but I was bound and determined to find out.  I learned very quickly that most people’s advice filtered through their own agendas.  It was at a support group meeting for parents of children with autism that my husband and I met Romey at FirstPath Autism.

At the time, I had never heard of things like Applied Behavior Analysis (ABA Therapy) and Theory of Mind (TOM).  

All I knew was that my child was kicked out of numerous preschools and now the school district was talking about institutionalization and my son was only five years old.  We had tried everything:  time-outs, spanking, ignoring the behavior, reward systems, sports, etc, etc, etc.  Nothing worked.  After learning about ABA Therapy and TOM, we knew it was something we needed to learn about and try.

I remember those early days…

…learning what an extinction burst is, using ABA Therapy and following through no matter how difficult it was and then crying privately because it was painful to administer the medicine of ABA.  I remember thinking about parents of children with cancer and how painful it must be to watch them suffer through chemotherapy treatments and then I realized that ABA is to autism as chemo is to cancer….and that helped give me strength to get through the tough spots.

My son was minimally-verbal back then.  He talked but not conversationally.  He would talk about things HE wanted to talk about and only to convey information.  I remember after a few months of ABA, driving with my son in the backseat, and I would always try to have a conversation but it was always one-sided.  On this particular day, my son responded back to me and before I knew it, we had about five or six exchanges.  We had an actual conversation for the very first time!  Thank goodness I was wearing sunglasses to hide my tears!

My son is now 16 years old and a senior in high school.  He has a driver’s license, a bank account and a job.  He attends college courses as part of his high school curriculum studying computer graphics.  He has NO aggressive behaviors, is sweet, soft-spoken, independent, reliable and can make eggs better than I can.  This would not have been possible without ABA.

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ABA taught us that behaviors are a form of communication.  

ABA taught us to analyze inappropriate behaviors to find the reason for the behavior and then teach a replacement behavior that serves the same function.  In the early days, my son would go up to a group of kids on the playground and hit someone.  After applying the principles of ABA, we discovered that he merely wanted to engage in play but had no idea how to do that.  

This is also where Theory of Mind comes in.  You see, we know what happy, sad, proud, and embarrassed feel like but a child with autism has difficulty labeling these behaviors and then making the connection on how to behave properly.  A child may have a complete meltdownbecause a tag on their clothing is annoying them but they don’t know how to communicate this so everyone just sees a kid having a meltdown.  ABA teaches you how to determine WHY the behavior is occurring and then how to teach a replacement behavior (ie signing that something is itching, telling you something is itching, etc).

There have been some interesting side effects of learning ABA.  

Using ABA reinforcement at home means we are able to be better parents to our other teenage son. We have a stronger marriage because we can look past an undesirable behavior and gain better understanding for each other, and I have even used it in my career to manage my employees.

Learning ABA is not the tricky part.  ABA reinforcement on a consistent basis is the tricky part.  Studies have shown that using ABA on a consistent basis has a well over 90% success rate (Lovaas).  I’m pretty sure that if there was a pediatric cancer treatment with that high of a success rate, parents would be begging to be a part of it.  Here’s your chance to be strong for your child.  Use your love for your child to administer the medicine of ABA.  I promise you that you will not regret it!