My Autism Diagnosis Finally Helped Me Understand My Family

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I’ve always known that my grandmother, Frances, and I are alike. We share, to one degree or another, many of the same behaviors and ways of seeing the world that finally drove me toward my own autism diagnosis.

I wouldn’t have survived without my grandmother and her partner. They fed and clothed me, paid the doctor’s bill when I was sick, and gave me the love and acceptance I received nowhere else. I repaid this by leaving home at 18 and almost never coming back. It’s taken me 43 years to understand that I was running away from myself.

In many ways, she’s a window into how my atypical neurology has been expressed among four generations of family members. It’s as though the building blocks of my autism and associated neurological challenges were expressing themselves to a greater or lessor degree in her, her parents and siblings.

I wrote a story last week about her. It was painful to write… part apology for so seldom returning home after I turned 18, part inquest into the ways in which she, her parents and siblings were so different from others and that they had passed down to me. I posted the piece before going to bed, only to wake up in the night and take it down. It somehow had left me feeling exposed and vulnerable to the same censure I felt as a child for not fitting in or being like other people.

It took another couple of days for me to recognize that the real problem with the story was that it was missing the sense of hopefulness and self-acceptance I’ve found since my own diagnosis. No matter how challenging it is for us and for our families, being neurologically different today is far different and, in most instances, better than it was a century ago.

Frances, grew up to be sharp, no-nonsense and capable of doing complex math calculations in her head, never needing pencil and paper. She knew lots of people by name but had trouble with small talk, kept to herself and never invited anyone into her home. She got up and ate her meals at exactly the same times every day, chain-smoked her way through packs of unfiltered Kools, worked crossword puzzles and watched TV. She became distressed to the point of tears if meals weren’t on time or plans changed at the last moment.

Accepting myself as autistic has been tremendously positive for me. Understanding why and the ways in which I’m different has disrupted a lifelong pattern of fear, anxiety and depression. It also has helped me stop running away from my past. It helped me finally understand what might have been going on with my family.

I often wonder what my grandmother’s life might have been like if there weren’t so many fears about being “different.” I hope her life would be more like mine. Different from most other people’s lives, certainly, but mostly filled with happiness and hope.

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Autism Speaks Is Changing Its Mission For the First Time in Over 10 Years

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Autism Speaks is changing its mission for the first time since it was founded in 2005. The organization is the largest autism advocacy group in the U.S. Its founding objective was to find a cure for autism.

Rather than focusing on a cure for autism, the nonprofit says it will now look towards advancing research into causes and better therapies for autism spectrum disorders, as well as promote acceptance, advocacy and support for individuals and families.

“Autism Speaks was founded on the goal of curing autism as one of its objectives,” Stephen Mark Shore, an Autism Speaks board member, told Disability Scoop. “However, similar to many experiences of parents of children with autism, the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum — rather than something that has to be done to.”

This year has marked a number of changes for Autism Speaks, most notably the death of co-founder Suzanne Wright, and the exits of its previous president and chief science officer.

As per its updated mission, over the next 10 years, Autism Speaks plans to make significant progress in the following areas:

  • A better understanding of the causes and typology of ASD
  • Children with an autism spectrum disorder being diagnosed before the age of 2
  • Children having access to appropriate intervention, services and resources immediately following diagnosis
  • The availability of better treatments both for underlying pathology as well as co-existing conditions that decrease quality of life for those with autism
  • People with ASD and their families have transition plans that result in more independent adult life that is meaningful to the individual
  • Individuals with ASD will have effective interventions, services and supports throughout their lifetime

As awareness has progressed, more have come to understand that autism spectrum disorder is not an illness, but a neurological difference that may present challenges for an individual growing up in a world designed for the neurotypical brain. An estimated one in 68 children in the U.S. are on the autism spectrum. It’s important to remember these children grow up to be autistic adults, who deserve support and acceptance.

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When Someone Says, ‘He Has Autism? But He Seems So Smart.’

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Has anyone ever said this about you or your child? When I work with parents of children on the autism spectrum, they tell me a typical unsolicited comment includes, “Oh, your child is on the spectrum? But he seems so smart!”

When I was growing up on the spectrum, I was seen exactly like this because of my ability to do my homework twice as fast as many peers in my classes. When I was in fourth grade in mathematics, I would get As often on tests and homework assignments and receive average grades in my other classes. When my parents would tell people about my grades, though, they would often get asked how I could be on the spectrum.

Today I get the same thing when I go out to speak. You won’t believe how many times during a Q&A I hear about how I’ve “grown out of having autism” and how I “seem so smart now.”

Whenever I hear a comment like this I cringe, but it’s also an opportunity to educate.

Many people with autism have unique interests and also unique learning styles. We will often pay attention more intently when we are doing something that interests us versus something we don’t like. Because of our key interests, many of us can become experts in our fields if we have a passion behind them. Temple Grandin, one of our leading advocates in the autism community, once said, “Half of Silicon Valley is probably somewhere on the autism spectrum.” Many of those in Silicon Valley, autistic or not, are the smartest people in the world because they’ve been able to turn their interests in technology into a career.

Of course, many individuals with autism (and without autism) may struggle to perform well in certain areas — but that doesn’t make them any less bright than the next person you meet. When we can find a way to teach the way these kids learn, we can find ways to help them show the world how bright they truly are.

This goes for those who are nonverbal as well. I used to be under the misconception that because someone is nonverbal that meant they were on the “low-functioning side” of the spectrum. Today, more than a quarter of individuals who have autism are also nonverbal. It wasn’t until I heard of Carly Fleischmann’s story, a young woman with autism who is nonverbal but communicates via her iPad, that I then learned of the countless stories of bright individuals like her out there in our community. 

Bottom line is, the next time you hear a comment like this, I want you to be reassured that our children are brighter than what the general public’s perception is. We are a close knit community, but we have a loud voice when it comes to having our stories to tell.

Ignorance is truly a lack of awareness, and the more barriers we can break down to avoid these comments the better our community will be.

A version of this blog originally appeared on KerryMagro.com.

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I Hope You Never Have to Remind Me: A Letter to My Son With Autism

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I have to say, we’ve come a long way, you and me, on this wild journey. And I’ve grown as much as you have in these short, full five years since we first laid eyes on each other.

No doubt we have our moments, you and me, when you cry and I want to, and when I cry and then it makes you cry, too. When you get mad and then I get mad, but at least we are mad together. It can be downright frustrating when you can’t understand each other. But we’re finding a way, you and me… our secret way of understanding. And in our understanding, we’re both learning how to live together and love each other. You’re learning to use your words, and I’m learning to watch mine. You’re learning to speak louder, while I’m learning to tone it down.

Yeah, we’ve come a long way, you and me, on this journey.

So when it happens, when I forget, and it feels like we’ve become strangers all over again — and I can’t reach you, because you’ve shut down and in all that shutting and retreating, you’ve shut me out. Please let me into your hiding place, so I can save us both from this place, where walls are tall and wills are strong and understanding has become a deserted friend. Because sometimes in all this growing together, I forget we’re worlds apart. And when our worlds collide, sometimes it’s hard to find a meeting ground.

The truth is, I need you as much as you need me. And I don’t ever want to lose what we have, this strange, silent understanding.

I admit I get caught up in myself sometimes, in my dreams for you and hopes for more. It’s just a straight-up mommy thing that can’t always be helped; that’s just how we get sometimes. But you are you, and I am me, and that’s what makes this such an adventurous journey. And for a moment I may forget just how much you’ve taught me and how much I’ve grown since we first met.

So please forgive me if I ever forget. If I ever take for granted our differences that color our lives and gift us with feelings we thought we could never experience. And if I forget like all mommies do, and you just have to remind me, even though I hope you don’t — I’ll be right here waiting until you let me back in, so we can keep walking this journey together again.

Follow this journey on Branch Life Journey.

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When I Questioned If I Did the Right Thing During My Son's Meltdown

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This was going to be one of those days, I could tell. Any little bump or graze would make him screech. If a toy wouldn’t stand, he’d yell. My son was on pins and needles. I thought an active day would fix things. We’ll go to the playground so he could climb and run it out. Since it was a hot day, he can enjoy the sprinklers too.

Getting him out of the house can be tough sometimes, but he went for it. Everything was going great; we came across a local festival. Lots of bouncy play areas and activities, another chance to expel all that energy. He waited patiently on each line for his turn at each activity. We made it to the playground, where he ran through the sprinklers and climbed and played to his heart’s content. I followed around, helping fill up his water gun, an excuse for me to dodge the heat and enjoy the sprinkler, too.

After that, we even went for frozen yogurt. With pop music pumping through the speakers, he couldn’t contain himself. He got up and began to boogie down, to the delight of the other customers and, I, knowing that I would’ve done the same thing if I wasn’t busy eating my fro yo, just sat and enjoyed seeing him so carefree after this morning’s edginess.

To cap things off, we needed to make a quick run to the drugstore. It would be a quick pass to get three essentials, and then we’d go home. It’s one of his favorite hangouts, so he was game. As promised, we got the items quickly and got in line to pay. Then he spotted a stuffed animal toy, this one larger than the one he already had at home.

After saying no to half a dozen other plush toys at a local toy shop on the way to the playground, he heard no one too many times. He started crying. Just as we were next on the cashier’s line, he stomped away, yelling all along the way to the back of the store. I waited for a minute, but it was clear he wasn’t coming back. I got out of the line to find him. I called him, but no answer. I found him sitting with his arm in the health station cuff, trying to check his blood pressure and giving me the side eye. It was comic genius, but after a long day of running after him in the hot sun, I could feel my own pressure rising.

I told him if he wanted to get home quickly, he needed to calm down. He protested and got loud again. I told him I had to get back on the line, but he said he needed to sit. I asked him to sit on a beach chair nearby until he calmed down. Thankfully the line was short and I was up next. But his shrieks were so shrill, everyone stopped on their tracks. I ran to him. I hadn’t ever seen him have a meltdown like this. My skull was rattling. I told him we needed to leave right then, but he shrieked even louder because he didn’t want to leave.

At that moment my mind raced, trying to find a way through the noise and chaos. The people gawking, my son unable to stop the ear-piercing shrieks, and I couldn’t get him to leave or to calm down. OK, what now?

I wanted so much to calm him down and not cause any more disruption. But all I got out of him was his confusion: He was angry, but he wanted us to pay for the items and get them home. But he was angry and couldn’t stop yelling. But he didn’t want to go home.

Even though it was a neurotypical reaction to not getting a toy that started this, it was that edginess he woke up with that was there now. It wasn’t about the toy anymore. Neither of us knew what it was about anymore. But I had to get us out of there.

I tugged at him to come and he continued melting down. I ran as quickly as I could, parked the basket under the register and apologized. I explained he was having a meltdown and had to get him out.

I ran out with him, still screeching, out to the street. The whole way over, he stomped and yelled, begging me to get the basket and pay for the items. I could feel the huge knot in my chest rising into my throat. I couldn’t. Now we had new gawkers outside and they only had half a story. I held both his wrists and swallowed hard. I looked into his eyes and told him my own fear. “If these people think you’re being hurt, they may call the police.”

His eyes widened. “Am I going to jail?”

“No, Baby,” I said. “But they’re going to ask lots of questions about me hurting you.”

He started yelling. “No! I love you!”

I hugged him hard and this time, spoke even calmer. “I’m not trying to scare you. We’re going to be OK. But not everyone knows what to do when they see someone screaming like you are. Not even me.”

He looked at me, calmer but still frowning. “But I’m so mad!” He started stomping and looking to see how I’d react. My mind fumbled for the proper response.

So I frowned back. “You’re doing it wrong. Stomp again. Harder!”

He looked at me, perplexed. He did a half-stomp.

“No!” I grabbed his hands. “Go ahead. Stomp! Stomp harder!”

I started stomping with him and he followed suit, stomping up and down like we were on a trampoline. His frown began shaking out and a giggle erupted.

“Can we sit on the ledge? I’m tired.”

With that knot in my chest still doing a number on me, it was me who was torn. I wanted to get home already, but I was wiped out, too.

“OK.”

We made our way up the hill to the garden ledge of a senior home and I held him while we rested.

There I tried to get my bearings. I hoped he understood that telling him my fear wasn’t a guilt trip, but my trust that he was old enough to become aware of the way others could interpret things. That I’m as lost and scared as he is, but if we work together, we could work things out. And I wondered if I did the right thing.

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You Are Your Child’s Greatest Advocate: A Poem

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You are your child’s greatest advocate when they need a diagnosis.

You are your child’s greatest advocate the day they are diagnosed with autism.

You are your child’s greatest advocate the day they begin receiving supports.

You are your child’s greatest advocate to be there the days they go through challenges.

You are your child’s greatest advocate when they need understanding.

You are your child’s greatest advocate when they go to school for the first time.

You are your child’s greatest advocate if your child is ever bullied.

You are your child’s greatest advocate when anyone doesn’t understand that you have to educate others about the way your child learns.

You are your child’s greatest advocate if they ever fall on a wait-list for supports.

You are your child’s greatest advocate when people don’t understand that you have to meet your child he or she is.

You are your child’s greatest advocate when you enter IEP meetings.

You are your child’s greatest advocate when they may need accommodations outside of the school.

You are your child’s greatest advocate to help them transition to adulthood.

You are your child’s greatest advocate when the school bus stops coming after the age of 21.

You are your child’s greatest advocate to make sure they have a village that surrounds them for their entire life.

You are your child’s greatest advocate for 500 other some-odd reasons that aren’t listed here. If you’ve met one person with autism you’ve met one person with autism, and each of our stories is different. It is a spectrum.

You are your child’s greatest advocate to make sure they never feel alone

For those reading this, take this poem and share it with your local communities to make sure each parent and guardian who raises a child with autism knows about their impact. I was diagnosed with autism at 4. My parents became my greatest advocates, and through years of occupational, physical, music, speech and theater therapy I’ve been able to live many of my dreams today as an adult on the spectrum who is a national speaker and author. I now have become an advocate in the hopes of helping people on the spectrum and their families.

Never forget the impact you have because even if you don’t realize it at times…

You are your child’s greatest advocate.

A version of this post originally appeared on KerryMagro.com.

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