Overcoming Autism Isolation

Children with autism have social impairments that cause a natural isolation from their peers, and this often causes us as parents to be isolated as well. I call it autism isolation. There are several behaviors that isolate autistic children from their peers. For one thing, autistic children have difficulty understanding nonverbal cues, like facial expressions, which people use to relate emotions. So, they will often react inappropriately in certain social situations. For example, my son laughs when someone is crying. He doesn’t realize that the person is sad, he just thinks they’re “acting funny”. We have to teach, or program if you will, autistic children to pick up on these cues that typical children naturally know. If I put myself in a child’s shoes, and I have a friend who laughs every time I’m sad, I wouldn’t really want to stick around. And that's how autism isolation begins.  

There are a lot of other things that separate autistic children from typical children. They’re different. They don't look different; they act different. They’re often described as being quirky, peculiar, and a little off. They don’t fit into that “normal” mold. They often do things that might not make sense to someone else. For example, my son likes to rub his head on people's chests (not a socially appropriate behavior). He gets away with it now, because he's young, but that's not going to fly when he's a grown man. Why does he do this? His brain has a hard time processing sensory experiences, like touch, sound, taste, smell, and sight. This is called Sensory Processing Disorder. Many children with autism have sensory processing issues. To some children, a touch can feel like pain, so they avoid it, but to others, they don't feel enough sensory experience, so their brain tells their body to find it. It's called Sensory Seeking. I have one son who is sensory seeking, and one who is sensory avoiding. These sensory processing issues can lead autistic children to do things like hand flapping, spinning in circles, and many other "odd" behaviors. Even though he has a legitimate excuse, my son's bizarre sensory seeking behavior definitely sets him apart from other children. And it causes me to have to make some awkward apologies to strangers.  

Many people on the autism spectrum have very limited interests. My child for example is obsessed with and can only talk about Transformers, or Lego products. Talking to him about his day at school can be like trying to extract information from a Russian spy. He doesn't like school, therefore he sees no need to talk about it and there's no way to make him. It can make it hard for kids with other interests to connect with him unless they are as obsessed with these things as he is.

To illustrate my point, I’ve drawn two circles. In one circle, you have a neurotypical child, or basically, your average kid. In the other circle, you have an autistic child. There is not always a complete separation of autistic behavior and typical behavior, so there is an overlap depending on where your child falls on the autism spectrum. The higher functioning your child is, the more the circles overlap, but the more severe your child’s behaviors are, the further they move apart. Your level of isolation as a parent will often match the level of the severity of your child’s autism, like these circles. If your child is high functioning, they will socialize more and be more accepted by neurotypical peers, which allows you to socialize more yourself. After all, you yourself are neurotypical, and crave that social interaction, just like everyone else.  

 

As a parent, especially a stay at home parent, you really have to make an effort to socialize your children and help them (and yourself) make friends. This is something that becomes a lot harder to do when your child has extreme behaviors. It’s hard to have a pleasant conversation with another mother while you’re constantly having to stop your child from stripping their clothes off or licking everything and everyone in sight. Not only is it difficult to help your child make friends, but you as a mom can find it hard to connect with mom’s who don’t deal with the same challenges you do. What do moms do when they get together? In my experience, they usually “talk shop” about raising kids. When your kids are in the autism circle, it’s difficult to relate because you have a completely different set of rules for parenting. So you sit and listen, and sometimes laugh to yourself and think, “Not my kid.”

It’s not that you don’t agree with the other mom’s, you’re just on a completely different plane than they are. And perhaps you’re even a little jealous. I know I am sometimes.

In an earlier post, I talked about how my son’s extreme behavior made my husband and I feel like captives in our own home, because every time we tried to go out somewhere (anywhere), our son would have a meltdown. It became so difficult, that we basically gave up and just stayed home. We isolated ourselves because we were tired of dealing with the meltdowns, but honestly, that’s not really what was best for our son, or for us. If you want your child to learn how to better cope with social situations, you’re going to have to let them practice, and you have to give them the tools they need to cope as well. It’s not easy, and it’s often a trial and error process, but it will be worth it in the end. Our family is STILL working on this.

There are things you as a parent can do to help break up the isolation that naturally comes from having a child on the spectrum.

1.     Join a support group. Common interests bring people together. Joining (or creating one if you have to) a support group for Moms with kids on the autism spectrum will help you feel less alone in the struggles, and even the joys of autism. Being able to “talk shop” and resources with other autism moms is invaluable.

2.     Set up playdates. I could do an entire post on the challenges I have with playdates, but despite how hard and awkward they can be, they’re good social practice for your child. To lessen the stress of playdates, you can start with family, if they live nearby. Family members usually understand your challenges and will happily adjust to meet your needs. If they don’t understand your challenges, EDUCATE THEM! This goes for playdates with non-family members too. If other people understand WHY you need them to come to your house, or to a specific park, or what strange behaviors they might expect to see, the more accepting they will be.

3.     Hang out with other adults WITHOUT the children. Socializing isn’t just important for your kids, it’s important for you too. The whole reason we socialize our children is so they can grow up and be well-adjusted “social” adults. Get a babysitter and invite some friends to go out for dinner. Enjoy socializing with other adults, and leave the autism at home for a few hours (don’t talk about it and try not to even think about it). This will feel strange at first, but trust me, it’s completely normal.

4.     Go at your own pace. Just because it’s important for your child to practice being social, does not mean you must be going somewhere or playing with someone every day. Some people are “social butterflies” who have a large circle of friends and like to stay busy, but others prefer to have just a few good friends. I fall into the few good friends category, and I have since before having children. So don’t push yourself (and your children) so far out of your comfort zone that you hate life. Do what works best for your family.

If you have a friend or family member with a child or children on the autism spectrum, there are also things you can do to help prevent autism isolation.

1. Take initiative. Be the one to suggest a playdate, or arrange a double date. Autism parents don't often put these things at the top of our priority list, but when someone else pushes us to do it, we're grateful for it. Often we don't want to impose on others or put them in an awkward situation, so we overcompensate by never making that first invitation.
2. Educate yourself. If you don't understand something about autism, ask. Chances are the autism mom will be more than happy to educate you. The better understanding you have, the more opportunity there is to create new friendships or enrich existing relationships. Don't be afraid of autism. Despite the odd behaviors, there is a lot of joy that comes from getting to know these amazing kids/people (this applies to befriending an adult with autism as well).
3.  Be flexible. As an autism mom, I automatically run through every worst case scenario in my mind for every social situation we encounter. I can usually predict what things are going to set my kids off, and I try to do what I can to avoid those things so we can all have a good experience. So, if I ask you to avoid doing something in particular, or even talking about certain subjects, try to be accommodating. (ie...The words Wal-mart, Target, and Toys R Us are prohibited in our house because it has the effect of saying, "let's go for a walk" to a dog. It gets everyone revved up.)
4. Be patient. This pretty much goes without saying. If you're friends with an autism mom, you're going to see some meltdowns. You will probably feel a bit awkward, because you'll want to help, but not know what you can do. But don't worry, as you become more familiar with the child, you will find ways you can help, and believe me, mom appreciates all the help she can get.

As much as everyone tries to say, “There’s no such thing as normal.” The truth is that a majority of society lives by certain social rules, and people who don’t follow those rules are outside the circle. Families affected by autism want to be a part of that normal circle. We just have to work harder to find that middle ground between the two circles.