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The Isolation of an Adult With Autism Who Grew Up Without Support

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At this time of the year I begin to feel a little sadness. In the summer I love being outside and talking to people, whether they want to talk to me or not. Now summer is over, and we have cooler weather and colder nights. This means people can use the weather as an excuse not to stop and hold a conversation with me. Colder weather means more time spent indoors, especially in the evening and at night, and when I’m inside for too long I feel a certain level of isolation.

I know a lot of people and I have friends, but I still feel isolated at times. I care about my friends, but many of them are busy with their kids. They have a deep love for their kids that I have never experienced. A lot of my friends have parents whom they care deeply about and brothers and sisters they have bonded with.

Those who have lost their parents or a family member will often feel sadness from time to time because they miss them. My friends care about me, but their family will always come first. They will make big sacrifices and do anything they can just to see their loved ones smile.

I never got a chance to build a caring relationship with my parents. I was an only child so I didn’t have brothers or sisters to bond with. I was born with differences, and so it was hard for me to connect with my peers because we were not on the same level. All of this left me alone and isolated. When I made friends I started to care deeply about them because I was never allowed to deeply care about anyone else before.

Being around others and having intelligent conversations often takes my mind off my problems. It is not easy to live with the challenges of my autism spectrum disorder, and it is not always easy to live in an adult body while at times feeling like a kid. What is even harder is dealing with these things alone without a kind, caring and supportive loved one. The hardest part about my life is trying to heal my wounds from the years of abuse I dealt with, and dealing with it alone. Imagine going through life having no one to protect you, no one to defend you, no one to speak up for you and no one to comfort you. Imagine being trapped in your own little world and not having anyone take the time to enter your world just to make an attempt to try to see the world through your eyes.

When you are on the autism spectrum, you may live in an intense world, you may have intense feelings and you may have an excellent memory. When you have an autism spectrum disorder you may be a visual and direct person. You may need to see, feel and hear. You may need direct instructions because everything that is common sense to everyone else is not always common sense to you.

There are times my feelings get the best of me — times I lose control of my actions and times my brain gets overloaded to the point it shuts down.

As I watch TV and hear people talk, certain things trigger memories from my past or stir up questions or thoughts. As much as I would like to forget my past I can’t. I can remember everything good and bad as clear as the day it happened, even if it was 30 years ago.

When I hear people brag about their kids sometimes, I can’t help but wonder how they developed such a strong love. When I hear people talk about how great their parents are, I can’t help but wonder why that person is so special that they gained the love of their parents. In the end it leaves me wondering why my life had to be the way it is.

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Halloween Tips and Cool Costumes for Sensory-Sensitive Kids

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Each October since my kids were little, I have struggled with the desire to give my son the “typical” childhood experience of dressing up and asking for candy and the anxiety of asking myself questions like: Will he have a meltdown after visiting the first house? Walk into a stranger’s house for candy and not leave? Make a run for it down the block? Get along with his siblings?

Here are five Halloween hacks that have worked for me over the years and have made this holiday a treat for our family:

1. Find a sensory-friendly costume: No masks, no hats, nothing itchy or constricting, something that fits nicely over clothes — a cape or some butterfly wings can go a long way. (See my favorites below.)

2. Make realistic expectations: Plan to hit three to five houses instead of 20, or five apartments on your floor. Keep back-up candy at home if you feel badly that he didn’t get enough, but feel proud that he could ring a bell five times and walk away with one piece from each door.

3. Practice, practice, practice: Several times before the big day, trick-or-treat room to room in your house, at a friend’s or relatives or at your own door.

4. Bring reinforcements: A spouse, a babysitter, your best friend, your sibling, a para from school — don’t try to do it alone. Another adult can help keep the mood lighter if things don’t go as you planned and help divide and conquer if you are out with more than one child.

5. Listen to your child: Halloween and trick-or-treating are not for every child. If you know the experience will be sensory overload or extremely anxiety-provoking for your child, put aside your own desires for the “typical” experience, pop open a bag of candy corn and stay home. Always try your best to set up your child for success. If you know it might not be fun for your child, resist the urge to do it. Next year they may be ready.

Now, for the costume ideas. They can be their own superhero! Each cape comes personalized with your child’s name in their favorite color — it doesn’t get better than that.

The Land of Nod’s Butterfly Princess Dress Up costume features a pair of glittering wings and sparkling skirt. It’s the perfect combo for fluttering through their neighborhood.

Your little one can save the day in this cool Tiger Cape. It’s made from natural cotton and eco-friendly ink. They might want to wear it every day. 

Wild Wings Dress Up set features a pair of beautiful bird wings, so your child can spend their afternoon zipping to every house and scoring all the treats they can.

This Bat Costume set features a pair of bat wings, so your child can spend their afternoons zipping through the night and eating all the insects and candy they can. Well, maybe not the insects part.

The soft mesh layers and cotton voile lining make these ombré Tutus perfect for a ballerina costume. The stretchy, elastic waist makes them incredibly comfortable for sensory-sensitive kids.

Grab these handcrafted Butterfly Wings and let your little adventurer soar into the land of wild imaginations, where creativity and learning have no boundaries. Each wing set is handmade with super soft felt fabric!

In a Firebird costume your child will be ready to soar. A bright bird costume in fall vibrant colors is perfect for Halloween and imaginative play.

For your sweet angel, fly away in these Lovelane Wings and create endless stories and memories. 

Costumes are great for pretend play and for speech and language development. Follow WOLF + FRIENDS on Pinterest to see more of my favorites. 

Follow this journey on WOLF + FRIENDS.

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I Rely on My Son’s Teacher to Share the Details of His School Day With Me

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For a parent of a child with special needs who may be limited in their ability to verbally express what transpired throughout their school day, communication between teacher and parent is key.

When I have a conversation with my son, Leo, who has autism, about his day, it might go like this:

Me: Leo, your note home said you had a good day?

Leo: Good day? (This is an echoic response.)

What did you learn today?

Leo:

Me: Did you eat all of your lunch?

Leo: Lunch? (This is also an echoic response.)

Me: What was your favorite thing that you did at school today?

Leo:

Me: I’m so proud of you, my Leo.

And I am, always, infinitely proud of my boy. 

There will come a day when he will tell me about every facet of his school day, and I will bask in every glorious detail. But for now, I must rely on his school and on his teacher to help me fill in the blanks.

That communication is so important. The details are necessary… Vital.

It is the difference between feeling like I’m stumbling about in the darkness, each trepid step marked with uncertainty, and feeling like I’m on a clearly lit path.

Every day, I send Leo to school for roughly seven hours. And when he returns, I rely on those details from school to give me insight into his day. So that I can talk with my child about the moments he expressed joy, the challenges he faced, what sparked his interest.

So that I may navigate my way through his world with him through that clearly lit path, rather than in the darkness, hands outstretched, grasping at anything that will help me understand what my boy sees and feels while I’m not there.

Follow this journey on Facebook at My Life With Leo.

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The One Thing I Want for My Son With Autism in the Future

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Shelby: “Whenever any of us asked you what you wanted for us when we grew up, what did you say?”

M’Lynn: “Shelby, I’m not in the mood to play games.”

Shelby: “Just tell me what you said, Mama. What did you say?”

M’Lynn: “The only thing I have ever said to you, ever, is that I want you to be happy.”

– An excerpt from the 1989 film “Steel Magnolias

Recently, a woman posted a status on Facebook expressing her fears concerning her daughter’s future. Her daughter, who was diagnosed with autism, may never move out. She may never live independently. She may never get married.

I’ve thought about these things before. When I see friends post cute little memes about how they’re not just raising men, but they’re raising someone’s future husband and father, too, I think about my son and wonder if he’ll ever be a husband or a father.

But honestly? Those things don’t seem to mean as much to me as they mean to some others. And I’ll tell you why.

I know people my age who are happily married. I know people my age who have already experienced divorce. I know people my age who have had their hearts broken once, twice, three times. I know people my age who are complacently stuck in relationships that may never progress. I know people my age who are single and enjoy it — and who are single and miserable about it. I know people my age who are in committed gay partnerships, some who are even married now (yay 2016, am I right?), and some who raise children together — biological, artificially-inseminated, fostered, adopted. I know white, Hispanic, black, Asian dating and married couples, and I know mixed-race couples. I know people my age who are single parents. Some who tragically lost the loves of their lives through natural causes or accidents.

Life doesn’t always turn out the way you think it will. And let’s face it: Everyone’s future is different.

Let’s pretend just for a second that my son is a neurotypical child who will, with pretty strong certainty, live independently one day. He might plan a white wedding alongside a beautiful bride. He might marry a man instead. He might go through an ugly divorce, or quietly sign papers for an amicable one. He might have children, or he might decide parenthood isn’t for him. He might devote himself to a woman and live with her, father her children, but never propose. He might get his heart broken. He might dedicate himself so much to a career that he never has time for relationships. He might flit from lover to lover. He might marry his high school sweetheart like his daddy and live happily ever after. He might be attracted to blondes or brunettes or redheads. He might not have a type at all. I might dance with him on his wedding day. Or he might elope. He might, dare I say, stay single for years and years.

Are some of those scenarios more preferable than others? I suppose so. But they’re all possibilities, right? I don’t believe that just because I raise him in a home with two high school sweethearts who stay together, manage careers, raise him — that he’ll choose the same path we did. That’s not exactly a fair assumption, is it?

So let’s put autism back on the table. Because of William’s developmental delays, communication struggles, and diagnoses, we don’t know with any certainty what he can achieve yet. We believe in him and his ability to learn and progress. We believe he will do things that will blow our minds. We hope to see him excel in school and select a job or trade of some sort.

But really? We just want him to be happy. What more does any parent really want for his or her child?

And if he is 18, 19, 20 or even 30, unable to function completely safely independently in the big bad “real world,” move out, rent or buy his own place, or participate in a relationship of some sort, I suppose I might have sad days. Because it’s a natural progression for a child to move on and start a life of his or her own as an adult.

But when I read that post on Facebook, I couldn’t help but let one selfish, strange thought cross my mind: If William is unable to leave my home or choose someone to marry and spend his life with, how lucky am I that he will belong to me forever?

How lucky would I be for him to always, always be mine?

It may sound simple. But those little thoughts? They comfort me. Do I hope beyond hope that his transition into adulthood goes smoothly and he can choose where to live, what to be, who to spend his time with? Of course. Do I hope he owns a home one day and he can invite me over for the holidays? Absolutely.

But right now, William appears to be the happiest human being I know. And “the only thing I have ever said to you, ever, is that I want you to be happy.” So no matter where he is, what he’s doing, if he’s happy, I’m happy. Simple as that.

Follow this journey on Momma Bird.

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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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