To the Parent Who Googled 'Should I Let My Kid Play With an Autistic Child?'

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First, as the parent of a child on the autism spectrum, I just want to say thank you for asking this question! That may sound odd, especially to some of my fellow parents of children on the spectrum, who probably read that headline and immediately went into ultra-protective-parent mode. It can be easy to hear (or read) about someone posing a question like this and then react with anger, bitterness, resentment, etc. But in all honesty, I wish more parents of neurotypical kids would ask these kinds of questions. Some may hear the word autism attached to a child, and it’s a deal-breaker when it comes to play dates, parties, sleepovers, and any other social interactions kids need as they grow and develop. At least by asking this question, parents like me have the chance to answer it.

First things first, let’s talk about the autism spectrum for a moment. For many people who have not had direct personal involvement with a child on the spectrum, the term “autism spectrum” itself may be a bit confusing. Autism is a developmental disorder that is unlike many medical conditions in that it is not “black or white” like, say, having the flu. When you have the flu, it’s an absolute; you’ve either been infected by the influenza virus or you haven’t, and there’s no in-between. With autism, however, it can be a bit different.

Autism is a spectrum disorder, which means there can be a lot of variability in the expression of the disorder from case to case. Each child who falls on the spectrum will have their own unique case of autism, and although sub-types can be similar, no two experiences are ever exactly alike. Like all kids, kids on the autism spectrum are unique, and that uniqueness can translate over to their particular case of autism as well. In the case of my youngest son, most of his issues revolve around social skills, social interaction, emotional control, etc. In the past, children like my son were diagnosed with a separate condition called Asperger’s syndrome. Asperger’s has since been redefined, along with several other similar developmental disorders, and is now considered part of the spectrum of autism.

Given that autism is a spectrum, the question this concerned parent posed to Google is not an easy one to answer. The bottom line is no one can answer this question but you, the parent of the child in question. It’s tough for me to admit that, given that I have a son who is on the autism spectrum. My gut reaction is to say, “Of course, your kid should play with autistic kids! Why the heck not?” But that gut reaction could be doing a disservice both to your child as well as the child who is autistic.

While every child on the autism spectrum is unique, and the way their autism manifests is unique, I’ve observed that some generalizations can be drawn. Many children on the spectrum tend to have a difficult time with social interaction. This can especially be true when the interaction involves peers of their own age group, new people, unexpected situations, and new experiences. And when you’re talking about kids playing with kids, odds are you’re going to get most, if not all, of those things coming together at once.

The best answer I can give you is if you are serious about reaching out to those in this community, then do your homework as a parent. Meet the family in question ahead of time, specifically the parents involved. Go over any concerns or questions you might have with them before deciding whether or not this is the right move for you and your child. Most parents of kids on the spectrum that I have met over the years will be very open and understanding about your concerns. After all, we’re parents as well, and just like you we want the absolute best for our kids. If the parents of the child on the spectrum do not want to talk or communicate about their child’s behaviors or needs with you openly, that might mean it’s not the best time for a play date.

This is also a good step, because it can give you at least a ground level understanding of what the complications and issues this particular child might live with every day. Once you have that information in hand, consider your own child and how they respond to different situations. Are they understanding of others’ differences, or do they tend to pick on other kids? Even though it may be done in good humor when they poke fun with other children, a child on the spectrum may have difficulty picking up on the nonverbal clues that can let neurotypical children know someone is joking around, and they may take good-natured ribbing as actual insults. That kind of confusion can be very hurtful, and it can be difficult to explain the situation once that damage has been done. Details like that can help you make an informed and responsible decision as a parent.

While it is true that some children on the autism spectrum can have complications that make social interaction with others in their age group difficult, if not nearly impossible, there are also many children on the spectrum who are able to have stimulating, fun interactions with their peers. And since social skills and interaction is one area where many kids on the spectrum struggle, it can be a huge benefit to the child in question. While the opportunities for playing with other children their own age can be rare, kids on the spectrum need that interaction to build their social skills and understanding. The more opportunities like that which are presented, the better a child can become at navigating the social landscape in less controlled settings like the playground, birthday parties and other social events as they grow older. By letting your child play with a child on the autism spectrum, you could very well be helping them build life skills that they will carry with them forever.

And, finally, consider the impact that something as simple as a play date can have, not only on the autistic child, but on their family as well. I will never forget the first time one of my son’s friends asked if he could go over and play. Such a small, simple gesture, but to me it was a sign that my son was making a real, deep, human connection with another child. One of my greatest fears, and a fear I’m sure is shared by many parents of children on the spectrum, is that my son will grow up alone and isolated. But in that moment, I saw hope. Hope that my son would be able to form deep, lasting connections with other people his age. Hope that he would not be left sitting alone at lunch, or isolated on the bus. I got to see the joy on his face as he left to go to his friend’s house and the broad, beaming smile when he came home. For our neighbor, it may have just been another afternoon riding his bike, playing catch, and being an 11-year-old boy playing with his friend; but for our family, it was so much more than that. For us, it was inclusion, it was acceptance, and it was a triumph.

As parents, we all want what is best for our children, and I know that desire for what’s best is likely where your question is rooted. So, again, I thank you for having the courage and the compassion to ask it, and I encourage you to look for chances and opportunities to have your children play with children on the autism spectrum. Something as small and otherwise mundane as an invitation to come over and play for an afternoon can mean a lot to a child on the autism spectrum and to their family as well.

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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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