How an Adult Autism Support Group Can Reduce Loneliness

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It’s been a year since I filled out the paperwork that led to my autism diagnosis. Calling the intervening months an “adventure” doesn’t quite capture the roller coaster ups and downs I’ve been on since then.

There’s no question that it’s been mostly good. Yes, some false steps, like wasting time and money on a psychiatrist who saw a prescription pad as less work than taking the time to help me better understand myself. But nothing that didn’t turn out to be a worthwhile learning experience.

The good parts of the past year have been many. I shared the diagnosis with my family and more than a few friends without losing their love or inadvertently ending all life on Earth. Not everyone understood or accepted at first, but they listened patiently, paid closer attention to my differences, and made room for me to be myself. I can still talk the legs off a chair, but my friends no longer flee the room and I don’t end up feeling hurt and depressed. They mostly smile and seem amused at how I can go on and on.

My one challenge has been a persistent, entrenched loneliness. It took a while to figure out why, but it has to do with missing a sense of connection to other people. I volunteer regularly to force myself out of the house. I get together with friends, which is fine even if I’m quiet the whole evening. But I don’t spend time being me with people I can connect with.

I stopped by the Autism Society booth at a local fundraiser last year and asked if they knew of any adult support groups in my part of town. No, they said, and suggested I start one. It took six months for me to gather up enough courage to begin reaching out for advice.

We had our first meeting last weekend. It was made possible by complete strangers, every single one of whom was kind, incredibly helpful and downright enthusiastic about making this new support group a reality.

The head of the local Autism Society offered to sponsor our group, provide insurance and got the word out to everyone in their email list. Our local community college was so enthusiastic it offered us meeting space for as long as we’d like, free of charge. Parents who run a “fun” group for young autistic adults offered advice and support, plus spread the word to folks they knew. Local autism advocates did the same, even helping me navigate Meetup (I’m just too old for some things, and Meetup is one). Complete strangers on Facebook helped me think through what the group might become over time and how to make sure everyone who attended would feel valued and included.

Thirteen people (12 more than I expected in my darker moments) showed up. There were 11 of us on the spectrum or with similar challenges, plus two parents. Ages ranged from high school to over 60. Everyone was different, but we all shared enough interests and challenges to feel connected in a very fundamental way.

We had a great time getting acquainted, deciding what the group should be and who would benefit from attending. By the end of the meeting, we had a long list of topics to cover in future meetings and an amazing amount of detail about the younger folks’ favorite computer games and consoles (another thing I’m too old for).

Everyone agreed the group should be a place where, “those facing daily life with ASD/Asperger’s-related challenges will have the opportunity to get together and be who they are, feel how they feel, and talk about anything they need to express in a safe space with people who understand these challenges.”

We hoped it would be a support system and friendship network extending beyond the group meetings.

We wanted it to provide support, encouragement and resources involving self-advocacy with family, jobs, etc.

And we wanted it to offer ways to have fun together.

It was pretty clear by the end of the meeting that everyone was searching for a way to live life more on his or her own terms and to find that missing sense of connection with others like ourselves. We all struggled with loneliness and want friends who understand and accepted us.

There are all kinds of support groups. If you can’t find one you like, think about starting one.

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When People Seem to Forget I'm on the Autism Spectrum

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Getting my autism spectrum diagnosis took a while. It wasn’t suggested that I was on the autism spectrum until I was in sixth grade. Even then, the idea was dismissed for a few more years until I was officially diagnosed when I was 15. Although I wish I had gotten some help sooner, I can certainly understand why it took them so long to figure out. I had learned ways to cope just enough that I could “blend in.” Well, at least somewhat “blend in.”

I certainly had my obvious moments of behavioral issues, such as acting like a dog in fifth grade and hiding under tables in sixth. I also had many miscommunications. But I miraculously managed to keep my grades up (despite the numerous meltdowns). Rather than learning the material, I memorized it. This strategy worked until I got to 10th grade and just couldn’t remember it all.

After I received my diagnosis, I continued pushing forward. I’ve worked hard. I can drive (on certain roads). I have a job (with part-time hours). I am even going to school (I can only manage one class at a time).

Perhaps I’ve succeeded in “blending in” too well, though. I say this because there have been so many times when people have gotten upset with me over things I struggle with. From issues with recognizing tone of voice to being too “lazy” to get things done, I’ve often felt unfairly judged for my problems. To be honest, I think people sometimes forget I’m on the autism spectrum at all.

Don’t get me wrong — I’m certainly glad that I’m capable of so much. But I have worked hard at it. I am still working hard at it. And I need people to remember that when I say I’m having a difficult time, I’m not looking for an easy way out.

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To My Younger Self: Please Don't Fear Your Uniqueness

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Dear Me, so bright-eyed and bushy-tailed:

Wild child who can’t sit still, full of joy, bouncing off the walls. Yes, you are strange, but please don’t fear your uniqueness. Be you; don’t grow bitter. Stay strange and amazing.

You have so much potential. Yes, your mother is right — you are smart. Stop believing when people tell you otherwise.

It’s OK that you don’t need people. That makes you independent, not defective. You are not cold and robotic; you are calm and logical. Yes, you do things differently, but someday this will be your strength.

The people who picked on you — it was them, not you, who had the problem. Bullies are often insecure and in pain on the inside, lashing out to make themselves feel bigger. Don’t be like them. Stay kind.

Silly girl who talks to the animals and trees. Never stop. Don’t worry about what other people think of you. You are perfect just the way you are.

With deepest love,
Me

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3 Travel Tips for Families of Children With Special Needs

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Traveling can be one of the most stressful situations children on the autism spectrum can find themselves in, trapped on an airplane for however many hours with no place to escape if a meltdown ensues. For our family, if the destination doesn’t include a beach, it is frankly not worth leaving home. In the winter, this necessitates airplane travel. In the spirit of setting my son up for success, when we board an airplane, we try to make sure the destination we choose will be as relaxing and enjoyable as possible for our whole family (we have four kids!), even if the journey doesn’t prove to be so.

Here are a few travel tips we have learned along the way:

1. Whenever possible, we fly Jet Blue. Jet Blue teamed up with Autism Speaks to do multiple “Blue Horizons for Autism” trainings with their staff and children with autism at airports around the country, and they go out of their way to help families with children with special needs. They walked my family directly to the front of the mile-long security line the last time we traveled. Not to mention they have TVs in the back of each seat. I will happily watch four hours of “Peppa Pig” if it means quiet, happy children.

2. Bring a bag of your child’s favorite fidget toys/video games/snacks on the flight. And maybe include some new versions they haven’t seen before for novelty’s sake. And if you think your child will need it, consider sending a box from Amazon.com filled with toys/art supplies, like Wikki StixPlay-Doh, and markers, that are disposable and will keep them entertained while at your destination.

3. Rent a house or apartment. There are so many options on TripAdvisorAirbnbVRBO and Kid & Coe that can help you find child-friendly homes at all price points for your family in beautiful destinations around the world. Luxury resorts like the Four SeasonsAuberge Resorts, and Como Hotels and Resorts provide the option to have accommodations like a home but with access to all the amenities the hotel offers. And Smith & Family is a site dedicated to family travel that is completely kid-friendly.

We do this because…

You can bring or shop for your own food. This can be especially helpful for picky eaters and toddlers, and you don’t have to go through three expensive meals a day in a restaurant with kids who won’t/can’t sit still.

Make some noise! You don’t have to worry as much about noise control in a house. Who wants to act like a librarian in a hotel with kids, shushing them all day and night for fear the manager will show up at your door? In a rental home, your kids can make as much noise as they want!

Save some money. If you have a bunch of kids, a house or apartment can actually be more cost-effective than multiple hotel rooms; ditto if you are traveling with more than one family.

Have fun during downtime! After a day of swimming at a beach or pool, or playing in the snow depending on your holiday destination, often there are still hours of the day to fill — that time between dinner and bedtime, etc. Even the smallest house has more space for downtime than a hotel room. Keep in mind, of course, even during what you may feel is a “travel disaster” — meltdowns, kids are making too much noise, stealing french fries from a stranger’s plate or somehow ending up on a moving luggage conveyor belt (this all really happened to me!), etc. — can lead to “teachable moments.” Other parents and children can learn tolerance, so keep your cool if people stare and try to be the light to let your child shine as much as possible.

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When I Struggle With Cognitive Empathy as Someone on the Autism Spectrum

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This is a very hard article for me to write, but I think it might help others in the same situation as me. Until my diagnosis as autistic, I was so scared I would be seen as something evil if anyone ever found out I have this “deficit”; you see, I have a problem with cognitive empathy, what is also known as theory of mind. I have a problem putting myself in other people’s “shoes.”

Let me say unilaterally and profoundly — not only to help myself, but to help those reading this with the same problem I have — having a deficit in cognitive empathy is not something you should be angry at yourself over, scared of, hate yourself for, or that makes you a bad person.

My cousin unexpectedly passed away a few weeks ago. I was not close to her, but I was very close to her older sister. Her sister came over to tell me in person and started crying, and I wrapped my arms around her. This may sound bad, but for me, due to my deficit causing more problems than normal, my brain defaulted to the social script/rule. Now let me mention, this problem happens less frequently now than in the past, because for one, I have enough experience to be able to match up automatically what others are experiencing and what I have experienced in my life, and two, I generally don’t put myself in situations where much if any cognitive empathy is required. However, when my cousin came over, I ran into the problem again: I could not put myself in her “shoes,” and I needed to.

This is a type of empathy that some of us on the spectrum can have problems with. Many of us can empathize with your emotions; in fact, some of us can do it too well, feel your emotions too much. I have a strong empathetic reaction to people displaying a strong emotion, or characters in movies. However, the type of empathy I am talking about, cognitive empathy, where we can see something from others’ perspectives is where a few of us can have a problem. There is a difference between the two, although many people might not realize that, and this may be why some people say those on the spectrum have no empathy.

I don’t do that well at understanding nonverbal communications anyways; throw in the issue with cognitive empathy, and all I can understand is she is crying and the emotions that typically go along with it, which gives me 20 percent of the information I needed to understand what was going on. Normally, this would not have caused an issue; normally, I don’t have reasons to put myself in someone’s “shoes.” But here, I felt I must to be able to best help her. I have lost both my parents, but that is different; I have lost grandparents, but that is different. I had no scripts, social rules or experiences that would allow me to be able to see this from her perspective, which made me very distressed and confused.

In situations like this, not only is the other person having problems, but for those of us with deficits in cognitive empathy, it can also be a scary and extremely confusing situation. Oftentimes, we may know we should be able to see it from their perspective, but we can’t. I know she must have a perspective, and if I could see it I might be able to better understand what to do to help her and how to react. Instead, all I had was a confusing blank inside of her, a flashing cursor. After my cousin left, it took me a little while to stop hating myself, to stop deriding myself as a horrible person for not having a “normal” ability, to stop being angry at myself for not being able to understand her. In situations of deficits, I’ve found many people direct large amounts of self-hate at themselves where a deficit is seen as interfering, especially with something important. But I am starting to realize and accept that having problems with cognitive empathy is OK. I am not perfect; neither is anyone on this planet. If we have a problem putting ourselves in someone’s “shoes” we do, and we should not beat ourselves up over it. We all have strengths that may give us unique abilities and insights, but we also have deficits, and those deficits are not the whole of our definition. We can work to lessen their impact on our lives by developing good coping skills and accepting the deficits.

A benefit to getting older is I have built up a library of scripts. It is how I survive, pass, function. I also have coping skills I have developed over years, like avoiding situations where something I have a deficit in is required or likely to happen. However, no matter how hard we may try, how many scripts we may have, how many rules may be in place, and how many experiences we can reference, there can still be times when we will have to say or do something despite our deficits that we are not ready for.

I was lucky; I think I did OK, just holding, listening and supporting her, basically, just being there for her.

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The Day I Found Out Nothing Was ‘Wrong’ With Me

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For most of my life, I’ve thought something must be “wrong” with me. I was fortunate enough to be formally diagnosed with autism spectrum disorder about a year ago. It’s something that was talked about when I was a child, and that I’d considered as an adult, but a formal diagnosis seemed to snap everything in to place. The puzzle was solved. I even celebrated.

Nothing was or is “wrong” with me. I’m simply a less common neurotype. Awesome. I started to make new autistic friends, relate to others more easily, make my own sensory toys, and more. I couldn’t thank my therapy team enough for finally solving this mystery. I can only laugh now, thinking about all the things I thought might have been wrong with me. Not that any of them were truly funny.

Some people may consider an autism diagnosis a bad thing. If that is you or a loved one, I encourage you to seek the positives about being autistic and try to make new friends, even if only online. It has had a huge impact on my self-esteem. My therapist reminds me of how much it’s increasing. Speaking of therapists, I also recommend you find a brilliant one. I’ve seen many and finally found the one for me. And I don’t have to pay top dollar to see him — he’s at my local mental health clinic. I see autism as something to learn to accept if you don’t, and hopefully learn to be proud about! Good luck to you!

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