****Inspired by multiple friends who have told me over the years about kind-hearted but misguided attempts friends have made toward them in regards to their child’s autism. It also is in response to several friends who have asked for tips to being a better friends to people whose children have been diagnosed with autism.****
Parents of children with autism often show signs of PTSD, similar to battle fatigue. Autism is an all day, every day thing. It pervades every part of a parents’ life. It creates situations that look as though they are straight out of a Fellini film. It has beautiful moments. And it has tragic ones. And you’re saying, wait, don’t all lives have those? Well, yes, yes they do but with autism everything is magnified.
Because autism is a spectrum disorder individuals diagnosed with autism will vary quite a bit with their specific needs and specific “quirks.” One of the most difficult things for a parent of a child with autism is that people without children on the spectrum tend not to “get” this. Not all of our children are savants who can draw/paint an entire NY skyline after one trip over it. Not all of our children will be able to perform with Katy Perry. Not all of our children are mentally retarded either. Not all of our children can learn to control outbursts or use the toilet.
If you have a friend with a child diagnosed on the spectrum one thing you can do to be a good friend is to approach their child with your brain free of misconceptions. Which means, clear your mind of anyone else you know with autism and view their child as an individual. You are not an expert on autism or their child. Because even the “experts” will tell you every child surprises them in some way. The only one close to being an expert is the parent of said child, and they can only speak to their experiences. Sure, they might not have a runner but know eloping exists, but if they don’t have a runner, they won’t know all the ways it can be curbed because it’s not germane to their situation. If their child does something that is bothersome, annoying or whatever, ask the parent about it. Don’t be accusatory but be genuinely interested. Example:” I noticed Johnny makes a high pitch squeaking sound. Does that mean he’s excited?” instead of “Wow, doesn’t that noise get on your nerves? I could NEVER live with a kid who did that. You are so brave.” I know, you thought you were doing a good thing by mentioning she or he is brave, but paired with those first two statements, it sounds like an asinine back-handed compliment. The first question allows the parent to explain things to you in an open way. The second invites defensiveness. Which would you prefer? Exactly.
So, you and a friend have kids the same age. Your child is “neuro-typical” and hers has been diagnosed with autism. You would like to have a play date. Because you want your child to be open and expose him or her to those who are “different” and not develop irrational prejudice. Well, the first and best way you do that is to talk to your child about autism. Yep, that’s absolutely right. You DO NOT avoid the subject. Why? Well, it’s simple, when we choose not to talk about something that may make us different, or uncomfortable (race, religion, politics, disabilities) we send the unconcious sign to our kids that those things are “bad” and then we find the irrational prejudice coming well, we don’t know where. And so, it is better to tell your kid, “Mary jumps up and down and flaps her hands when she’s excited and screeches. When she does this, we should smile at her and talk to her. Ask her if she likes that and is excited about it,” than to say, “Mary might do some things different.” If your children have always known each other and are going on a playdate, it’s always a nice gesture to make sure that you are considering any special needs their child may need such as choosing a place that doesn’t set off any sensory issues. Or scheduling it during a time of day when their child can enjoy it most. Some kids are not responsive too early, others are too tired to enjoy late in the afternoon etc.
Be careful about the language you use. And not just avoiding profanity because their child may quote it, although that’s a great idea too. Some parents are very offended if you call their child autistic vs child with autism. Others may dislike the use of “cure” talk. Always follow their lead and when in doubt, ask.
Along with that last one, while most parents welcome the opportunity to talk about their child, it is always best not to ask them about “treatment” topics or causation unless they bring it up. It is less than helpful for a person without a child with autism to suggest diet recommendations or costly therapies. While most of us realize you are “just trying to help” it reeks of insensitivity and often suggests to a parent who’s on a razor’s edge anyway that you are judging their parenting negatively. If a parent has a child on a gluten-free regimen, they will tell you, trust me.
You know how it is never recommended to compare two children right? Well, that goes triple for kids with autism. Some kids do great with diet changes, while others see no change at all. Some kids are delayed with speech for a few years while others never speak. It is very frustrating for the parent of a child with autism to hear “when is he/she going to talk.” Or, “so-and-so’s child talked at age (one year older than the child currently is) so, you’re kid will probably be speaking next year.” Substitute potty-training or self-feeding or whatever else the child in question is not doing at their present age. While intended to give a parent hope, it rarely has that affect as they have known from parenting their own child that you can only set certain expectations. And one of the hardest things on parents with children with autism who also have developmental delays is being reminded that their kid isn’t “normal.”
Finally, and this is hardest for people without kids with autism to understand, try not to send articles/links/etc about awesome things kids or adults with autism are doing unless you know that person appreciates them. For most of us life is hard and sometimes it’s harder than anything you can imagine and in the trenches when you are literally cleaning up smeared crap a ten-year-old got all over his room or fighting with a child who could physically over power you while screaming obscenities in public those kinds of articles are not helpful. Sometimes they serve to accentuate what your child cannot do instead of inspiring hope of what you “might” see. Some of us are operating on minute-to-minute survival and find it insulting. While you certainly may have that person’s best intentions at heart, it helps to remember that you are not living their struggles and it is possible that they don’t find those reports encouraging in a haze of sleep deprivation, bruises and partially eaten meals.
If you see a friend struggling, you can ask how you can help. A lot of us are embarrassed to ask. A lot of us assume no one would willingly take part in our misery. But a friend who sees and says, “Hey is there anything I can do to help?” Is a true friend in deed.
Trust me, we want friends. And we understand that everyone is coming to us with their best intentions, we don’t want to set a lot of “rules” but for most being friends with someone with a child with autism is uncharted territory and although there are very few road maps with autism, it can help to avoid hurt feelings, confusion and create stronger bonds between friends to know up front what we prefer and what could come off wrong.