Angry Autistics - A Two-Part Exploration: Part 2 Autistic People

In my previous post, Angry Autistics Part 1, I addressed parents, hoping to help them understand why some of us react with anger to their questions. 

This second part is to address Autistic people in online forums, who are offering advice. While the vast majority are helpful, I believe we are getting fragmented within the community by those who react in much more aggressive ways. I have seen way too many Autistic people just drop out after being attacked by fellow Autistics. 

Fact is, I don't believe aggressive behaviour, in any facet of life, moves people forward. It makes sense to be aggressive if being attacked. Self-defense has a place. However, I do not feel that the vast majority of the time anyone is really being attacked online to the point that it requires so much aggression.

While people are more likely to hear you if you are yelling at them, it won't make them want to listen to you for very long. I believe we need parents to listen, not just hear us, if we're going to make any headway for understanding. 

I've been accused of tone-policing, and we can disagree on that. I simply think when people are calm, logical, measured and even, the doors of communication stay open longer. They might still close! That's a chance you always take, but you still can hope for the best. If things go well, even if the door closes, it might be opened again after some time.

One thing I think needs to happen is you need to give some of the many well-intentioned parents a second chance. Sometimes they need to sleep on it a few days or weeks to come around. If they're fighting you tooth and nail about something heinous, by all means, protect yourselves and ban them. But if they're slowly learning and sussing things out, asking questions and trying to understand, give them some time. 

"It's a very important thing to learn to talk to people you disagree with" - Pete Seeger

The problem with responding with anger each time someone asks what they think is an innocent question, is you end up in a room with only people who agree with you.

That's cool, if that's what you want, but it's not cool if you want to enact change in others. Because they can't ever learn if you don't explain it to them. 

It they don't get it the first time, try a second time. If they don't get it after that, then consider either communication is not working or they need to think. And yes, it can be frustrating. And yes, it requires patience. But yes, I promise it's worth it in the long run.

At the same time, people don't have to agree on every little thing in order to get along and work together for the greater good. There are grey areas sometimes and grey areas are ok. Work with what overlaps.

Please also keep in mind, I am not talking about people who blatantly troll, or derail threads ("if you cared, you would teach me") - I'm talking about the ones who you can send links to posts or books to and they will read them and think about it. Stick with the receptive ones and don't ostracize them. 

I'm asking you to give strangers on the net, who know nothing about you, the benefit of the doubt. They are not your parents. They are not the guy who bullied you in third grade. If you only allow the people who ask questions you find acceptable, then you will eventually find no one is asking you questions. That's fine, you're not required by law to answer questions. In which case, don't pretend the intention of your community is to help EVERYONE. Tell people it's to help only those who already fit into your neat box of who you are willing to help so they can weed themselves out. That will make you a lot less aggravated and stop spreading the aggro around. 

Accept that us Autistics often take things very literally and personally. I can't even count how many times someone has left a comment on my blog and I thought it was negative, but when (kindly and patiently) rephrased by the commenter, it was very positive. My misinterpretations are on me. I have limits. I accept them. So I need to ask others around me (usually NT) to get their opinions. I ask people whom I trust have my best interests at heart and have proven themselves so. Anything can be made into a mountain if you have a lot of angry people looking at the problem. Sometimes it was tone that threw me off. Sometimes it was words. It doesn't matter, and I believe intent doesn't matter, but sometimes you have to give the benefit of the doubt. In the end, it's about the kids, it's not about you. If you truly care about how the kids turn out, you have to keep the parents sweet on your side. You can do that without compromising your morals, beliefs and self, AND you can do it without being angry. It's true. I'm sure of it.  

A lot of us actually don't have children of our own, and yes, that may sound ____ist of some sort, but it's true, it does make a difference. It doesn't mean no insight can be offered, but realistically, the only people who can speak of their experience with any authority should be those who actually live that experience. I would not expect a white person to speak for the black experience, nor would I expect a man to be able to speak about the female experience. Similarly, parenthood is something one has to live in order to really understand. So please don't act like you are a parenting expert because you were once a child. No matter how well-intentioned you are, or how much you think you know ("but my friend has a kid! That's totally the same!"), you cannot act as an authority to that experience.

Finally, please try to remember that some Autistics hold internalized hate or hurtful language and will say/write things, not because they are trying to insult you, but because that is all they know. Before I knew how awful Autism $peaks was, I supported people for their walks, because I did not know better. The way to teach someone, however, is not by calling them names or insulting their intelligence - the way to teach is with empathy and understanding - the same way many advocate we teach our children. 

Fixing Behaviours

Oh boy, I get a lot of juicy post ideas from some of the parenting groups I'm on.

One was about her ASD son doing a specific behaviour. He's young and when she asked why he does it, he said it's because he likes it. She then asked the community, "how do I stop it?"

Well, the first question out of my mouth was, "if he says he likes it, why do you want to stop it?"

To which she replied, "good question! Maybe other people won't like it. It doesn't actually bother me when I think about it."

So what's the problem?

Here we have a trap a lot of parents fall into:
child is doing something different from others, therefore it must be stopped!
There's this whole school of thought about fixing behaviours.

But guess what? You don't have to like every single thing your child does. Do you know why? Because they're not mini YOU. They are their own person and they get to have different likes and dislikes. I bet they don't like everything about you either. Tough.

You also are not required to control every single little thing they do. You don't. You have your own life to live and you should value your time. Micromanaging your kid's behaviours probably isn't the best use of your time, especially when it doesn't actually harm anyone.

So my solution for the above mother: talk to him! Tell him you understand he likes doing this thing, but that not everyone will appreciate it. So he should only do this thing he likes with other people who like it. This way you are explaining to him how to respect other people's space/needs without actually stopping or shaming his enjoyment in said activity.

Again, as long as he is not hurting anyone, including himself, and he truly is enjoy it, then why not let him enjoy his life?

Besides, what else is childhood for if it's not for exploration and discovery? It won't be long until he's into something else. Not every behaviour needs to be "fixed."

Competition and Comparisons

I participate in a few groups online, specific to disability issues. One is special needs in general and another is specifically for apraxia (Childhood Apraxia of Speech or CAS). We all need people to vent with, or ask for advice, but sometimes I think some parents cause their own stress for nothing.

One was complaining because her two year old refuses to feed himself. He eats, but only as long as she feeds it to him.

Now first of all, I'll admit I have little sympathy for any parent who complains their child is eating food at all. Try living with a kid who eats like, nothing, and get back to me.

So I told her I still feed my almost 5 year old and big whoop, he'll figure out a fork and spoon whenever. Or never. Whatever. Maybe he'll use chop sticks or a paring knife, I don't really care as long as he eats FOOD.

Because guess what? The way my child eats will not change the world. No one will die if he uses his fingers.

Now of course I don't mean, just forget about all milestones and developmental issues and never get therapy. On the contrary, by all means, continue to help support and teach him, but in the meantime, don't lose sleep over silly little things that really don't change your life all that much.

Does feeding a kid take more time? Sure, but last I checked, I wasn't in some sort of arbitrary parenting competition where we have to feed our kids the fastest or die. I became a parent knowing sh*t takes time and I can't keep the same old carefree lifestyle of the past. So yes, meals might feel like they take "forever" and you'll end up with cereal all over the couch. C'est la vie.
Parenting is not a competition!

Then she says she's stressing because it's her non-disabled kid who is slower. So she's comparing the two and it bothers her. Another mistake! Don't compare people. Everyone is different. Problem solved!

So that's my parenting advice of the day - forget the two Cs: Competition and Comparisons. Just let it go and get a good night's sleep... if your kids let you. That's another issue :)

Only Diamonds Last Forever

This Valentine's Day, remember only diamonds last forever and enjoy the moment :)

New parents often hear this sort of arbitrary "advice": "if you don't stop your child from doing X by X-age, they will never stop doing it!"

Or

"If you don't teach your child to do X by this age, they will never be able to do it."

The problem with this sort of crap (and it is crap) is that it scares parents and is simply not logical. Parents will second-guess their instincts and do stupid things in order to comply with the specific timeline some idiot has made up.

I once heard a doctor quote on a website: "if you don't teach a child to eat with a fork by the age of 12 months, they will never be able to do it."

One, NEVER is a really strong word. Two, what's so special about 12 months? What about 12.5 months or 13 and 2 weeks? Three, what if you live in a culture that doesn't use forks? Is that really so bad? Did you know that the MAJORITY of people in the world DO NOT USE FORKS to eat? Are they missing out?
What about me?  I didn't grow up using chop sticks but somehow managed to learn to use them as an adult. Fancy that! And you know what, your average person will not starve because they don't have the exact correct eating utensil. They will find a way to stuff their face.

What you should be asking yourself is, does the child eat food? Yes? Fantastic! Now go find a real problem to worry about.


I always love the whole, "if you don't get them out of your bed/off your breast by....."
Really? I can totally picture my gangly pimply 15 year old, with stinky feet and a creaky new man-voice, jumping into my bed after school and saying, "mama, can you cuddle me?" Sure. Hell just froze over. It's just not going to happen even if I wanted it to happen (and believe me, I don't!).

Look man, enjoy your kids when they are small. They are only small once! Let them develop how they do, even if sometimes it seems a little slow. They will only need you this way once and then they grow up and need different things. I savor those feet kicking into my kidneys and the kisses on my face in the morning because nothing lasts forever.

Baby them while they're babies. That's our job.

Special Needs Parents

I once heard there's no such thing as "special needs children," there are actually just "special needs parents." It's a different way of looking at things and a reminder that us parents are special and need to take care of ourselves. We have different needs from other parents because we have different (or more) responsibilities. We worry about things other parents don't have to. So with all that on our plate, we need to take good care of ourselves.

I've shared my tips on how my family does goal setting and I want to share how we take of ourselves in our unique way.

Go It Alone!

I heard this tip from a couple (it was in O magazine) who defined it as a reason for success in their long term marriage: spending time apart.

This might sound counter-intuitive since Hubby and I hardly ever get time alone together, but for us at least, we also need time completely alone. So while it is important to have "date nights" to strengthen the relationship, "absence makes the heart grow stronger" also. For us, it's important to get completely away and rejuvenate. We don't go far - we book a night at a local hotel and check in all alone! We take turns once a month or so, so every two months, I literally get my chance to sneak away.

Important points for success:
-Resist the urge to tell anyone else where you are!
-Your partner or babysitter must agree not to call you unless someone's arm has fallen off or the house is on fire (and even then, there's not much you can do about it, so why bother you now?)
-Resist the urge to call and "check up" on them.
-Plan the day away ahead of time. You cannot just up and leave when you want. Make sure the rest of the household routine and responsibilities are taken care of. Both agree on the date you will be absent and create a care plan around it. Your partner might need to have an extra person around to help them in your absence. Only leave when it is convenient, but don't make up excuses to never do it. Your partner, or you, may find out it wasn't so hard alone taking care of the kids. In my experience, our son is better behaved and calmer when there's only one parent around...usually.
-Use the time to do whatever you want to do or do absolutely NOTHING without guilt! Last time, I arrived and enjoyed the complete silence of the room. I didn't even turn on the TV. I brought a pile of magazines I had piling up (need to cancel some subscriptions!) and just spent hours leisurely leafing through them all. It was wonderful!

Keep a Routine

As much as your children love routine, so should you! That means sleep (especially sleep!), meals, taking daily vitamins, yoga, meditation, reading a book, getting physicals - whatever it is that keeps you healthy - make sure you don't forget about them! Schedule them, set timers if you have to, but do it for yourself, guilt free. Believe me, I know there are some days I'm just trying to get out the door and we've had a tantrum of a time just trying to get dressed. Sometimes I think "maybe I should just skip brushing my teeth or eating breakfast," but NO, don't fall into the trap! Give yourself those 5 minutes to get what you need to get done and you'll feel so much better. We can't all start our days feeling like rock stars every day, I know this. But promise me you'll at least give yourself a chance to brush your hair and feel human. Let's start there.

Talk To People Who Get It

Having a rough day and need to vent? Calling up your best friend with the neurotypical kids might not cut it. Sometimes you just need to talk to someone who gets it. Maybe you met someone at a support group or on an online community. You don't have to be best friends and sometimes it's better that way. You know you can talk to this person and not have to explain everything. Find one or two of those people. Be the same sort of support for them when they need it.
Don't just share negative issues though - call them to share your joy. Every one needs an ally. We can't go through this journey totally alone.

**Some more advice and resources for special needs families.

**A Bill of Rights for Special Needs Parents.

There's No Instruction Manual

No nothing makes sense
Nothing seems to fit
I know you'd hit out
If you only knew who to hit...
-Acrobat by U2

I find since getting pregnant and then having a child, my life just hasn't gone quite as planned. Though, come to think of it, I'm no longer sure what my plans were. I think I thought some things would just flow easier and others would be harder and in reality, none of those things were the case!

I feel like I'm at a crossroads in a lot of ways: Do we adopt, or do I try to get pregnant? Do we worry about my child's weight and development, see more specialists or wait and see? Do I disclose all these things in a very public blog on the Internet? Do I start working for myself again?

I don't have a lot of answers right now, but I think the purpose of this post is to tell other moms and dads they're not alone. Your life changes completely when you have a child and not always in ways you'd expect. It's ok not to know what to do or where to go or how to get to the next point. It's probably ok to take it one day and a time and just keep plugging along.

The first thing my dad said when I told him I was pregnant is that, "we all do the best we can at the time and they don't come with an instruction manual."

I guess that's what I have to remind myself.

What little bits of wisdom help you through tough times with kids?