October 22, 2013

Bridging The Gap Between Autism Parents and Autistic People

If you've been either blogging or reading autism blogs for a while, you'll see there's a divide between "Autism Parents" (usually moms, but I don't want to be exclusionary to dads, grandparents or guardians) and Autistic individuals. I hear complaints from many "Autism Parents" who don't understand why they are not fully accepted into the Autistic community. There are obviously some who manage to get an "in," but those who don't, don't understand what they're doing wrong. I'm going to try and break it down and hopefully bring some understanding.


I've been using the hashtag #WatchYourLanguage on Twitter recently, as well as linking to dictionary definitions of words people are using to describe Autistic people. If you are going to talk about us or to us, we ask you to use the words we have chosen for ourselves and those that do not cause harm. Realize that even if words are not a big deal to you, they can actually cause emotional harm and even trigger PTSD in some people. Many Autistic people are very precise about the words they choose (in fact, I've always been obsessed with that) so we really do mean what we say. Mean what you say and say what you mean while being cognizant of the power of your words.

Believe us when we say certain words can hurt.

Homosexual people don't like hearing "gay" as an insult, and disabled people don't like hearing "retarded." You know that. You understand that, right? Now also notice how some Black people don't want to be called "colored" or "African-American," but others are ok with that. It can be confusing, but it's not really if you simply respect what the individual wants to be called. If you are not sure, you can ask. I understand you can't always get it right (hey, even I don't!) but you can still make the effort to try. The vast majority of Autistic people I have been in contact with (including me), prefer being referred to as Autistic and not Person With Autism. If you stick with Autistic Person, you will offend way fewer Autistics than Person With Autism. If Person With Autism is pasted all over your blog/writing, we will assume that you are a "curebie" and don't respect us. If you want us to on your side, you need to get with the least hurtful lingo for the majority.

Respect our authority

We are the authorities of our experiences. We've had good and bad experiences in life. You do not get to dismiss the ones you don't like to hear about because it touches a cord with you. If you made a mistake, learned something new, and want to make a change in the way you parent as a result of what you learned, then great! Don't beat yourself up about the past. If you feel guilty (or think that by sharing our experiences we are guilting you) that is not about us -  it's about you. You do not get to take out that frustration on us. Do not discount how bad something was for us because you do it (or did it) and don't like yourself for it.

Stop acting like every day is a huge trial and tribulation

It's ok to complain - we all have bad days - but all your bad days can't be blamed on autism. Sometimes kids just act up and it's because they're kids, not specifically because they're autistic kids. Remember that your child is still a child, like any other child. There may be a few exceptions here and there, but in general, you can't blame every issue on autism. Some of it is just childhood and some of it can also be bad parenting.

Stop looking for cures

Is your child dying from cancer? By all means, hold a fundraiser for cancer research. Is your child autistic? Get over it. (This also applies to people trying to change homosexual people into heterosexual people) You can't change brains. You don't get to pick a new brain for your kid because you don't like the brain he/she has. The sooner you get that and love and accept the child you did get, the better everyone will be. With acceptance, you can learn how to best provide assistance. If your child were deaf, you would probably get them a hearing aid and maybe also learn sign language. They may be a good candidate for a cochlear implant, but they still won't hear sound the way the majority does. Certain aids will make life easier for them, but they will still always be somewhat hard of hearing. On their own they may adapt by learning to read lips, if that works for them. In the end, they become adults and communicate in the way they prefer. So by all means, focus on giving your child lots of options to make life easier, but don't waste your time trying to change them fundamentally. It just won't happen. An even bigger take away is, many of us wouldn't want that to happen.

We are not trapped, lost or oblivious

We are not trapped in our minds or lost in our own world. We are not oblivious to the world around us. If anything, we feel it more deeply and with more mindfulness and connection than most NTs (don't people learn meditation for that purpose?). We hear when you're talking about us within earshot. Let me repeat: we hear everything you say when you think we're not listening. And if we don't like what you said, then we have no reason to respect or want to listen to any more of it. Would you want to talk to someone who talks negatively about you right in your presence?

Stop making excuses for the inexcusable

You need more services for your child? Write letters, call representatives, stage a protest, do what you've got to do! But don't use a horrible senseless murder as your opportunity to gain support for your cause. There are few things that will make me question whose side you're really on more than having compassion or sympathy for a murderer. There are plenty of positive things you can do to raise awareness, without aligning yourself with negative actions.

I'm not a puzzle piece

I'm different, I'll admit, but I'm not a missing piece of a puzzle that needs to be completed. I am not the piece that doesn't fit. I am not a lost piece or mistakenly put in the box of the wrong set. If that's what you think, I don't want to talk to you. It's that simple.

Do not tell us we can't understand

Do not argue with us and then decide we cannot possibly understand because we're autistic and lack empathy or "theory of mind" or IQ. That's like a punch below the belt. It's demeaning, insulting and again, it lacks respect for us being the authorities of our experiences.

The main point here is we all make mistakes at times. The first step is becoming aware of your speech and actions. The second is doing something about it. Make amends, apologize (especially to your children), edit, delete or rewrite blog posts or tweets that don't fit your new ideals. Seek out genuine friendships with the people you want to learn from and accept them the way they are. I certainly don't agree with every single person I encounter, but I can take their good points with their flaws, especially when they are making an effort towards more good.

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