There Needs To Be More Kindness In the Autism Community

 

The biggest thing we can contribute to other parents is kindness.

Every day when I open my news feed, I see messages of distress from people in the autism community. It might be from children/adults with autism or it might be from parents. Sometimes it is the autism itself that is causing the distress or more likely a related condition (epilepsy, gastrointestinal issues, sensory issues). Sometimes it is someone else, that might have said or done something insensitive that has made our day darker. But very often, too often, it is someone else within the community. And it needs to stop.

I have been pretty lucky myself. Nothing like this has happened to be in a sustained way. If people disagree with me we have a great discussion until one of us gets too busy (usually me, sorry) and lets it go. So nothing that I am writing here is about anything that anyone has written to me!

The abuse might be because we do intervention. It might be because we do a different intervention to the one you do. It might be because we have/don’t have a special diet or even over whether or not we tell other people our children have autism.

And here’s the thing. Everyone’s experience of autism is DIFFERENT. Everyone’s approach to parenting is also DIFFERENT. We are all doing our best for our children, whom we all love very much (well, I hope so).

And even if what we do deeply offends you, even if you are right to be offended. I don’t deny this. Some of the things we write are downright stupid, wrong, and maybe we are harming our children. It does happen. Still, you are never going to effectively change anyone’s mind if you are aggressive and abusive. The best way to change someone’s mind is to meet them on their level, start at a starting point as close to theirs as you can get, and then gently (and over time) show them alternative ways of thinking.

Let me illustrate. I read a post recently by a mum who admits she used to be an anti-vaxxer. What convinced her to become pro vaccine was not a comment from someone like me being all logical. It wasn’t someone telling her angrily on Facebook to stop being stupid, vaccinate her kids. It wasn’t reason or logic, or those funny memes that list a large amount of scary words and then add that those are the ingredients of a strawberry. What convinced her was someone from her own parenting community, someone that also breastfed her kids for ages and made them only organic home-made meals, that gently led her to question these theories. These days her kids are all fully immunized.

I’m still going to poke a bit of fun at people that are scared of ingredient lists. But I shouldn’t….but it’s funny!

Being Reasonable is Hard

Now being all quiet and reasonable is not easy to do. It is incredibly easy to lose your temper when you see a post or hear someone say something you disagree with. Parenting is the biggest cause of arguments among couples, families, and with friends. It’s just one of those things we have strong opinions on and think people’s lives will be permanently affected by. Adding autism into the mix makes everything harder and gives you about a thousand more things to disagree about.

But we need to control our impulses. It can break up marriages, friendships, and it can make someone else’s day a lot harder without any benefit whatsoever. They will not think twice about what they are doing, only about you.

It’s Possible For Two Good People To Disagree

I’ve been reading a biography of Alexander Hamilton. He was one of the Founding Fathers in America and although he was a brilliant man – he had this fatal flaw. And it killed him in the end. He would attack people that disagreed with him. He was capable of reasoning with them. But he would also attack, scream, shout, and get very personal. In the end he died in a duel against someone that he had thus abused. So the world was deprived of his wisdom and amazing insights because he couldn’t control himself.

And I think that his fatal flaw is repeated many times over on social media. We take people that disagree with us and demonise them. We think they must have other motives, they must be particularly stupid or horrible or evil. But in reality it is completely possible to have two educated, intelligent people that have exactly opposite views on everything that it is possible to have views about.

Our Experiences of Autism are Very Different

All of our experiences of autism will be different, and all of our children will be different. Some of us will be fine with it and accept it completely. Others will have children that have the mental level of an 18-month-old when they are 18 years old, and throw epilepsy and some other conditions into the mix and it becomes a lot less easy to accept. We might also be struggling with a toddler but then everything becomes easier with an 8 year old. And of course each child is very different so things that you do that work with your child, might not work with another one.

Then there are those that are the children. Maybe the children in twenty years time, who had horrible experiences with their therapies and want to stop others from making the same mistakes. Except that you really don’t know that they are making those mistakes, it is entirely possible that their therapy is completely different and maybe their child enjoys it. But it can be hard to when you have experiences like this to shelve them and not act aggressively towards others.

So we must all remember that our experiences are different. People with autism are different. That is always the starting point for all discussions.

I Bet Michael is Different to Your Child

Let’s take Michael for example. In many ways he is completely different to every other autistic person I have ever talked to. He loves change. He loves other people and especially peers. If he sees a peer anywhere in the playground he references them straight away and usually tries to play with them.

He also is very good at eye contact (he often grabs my face and manipulates it so I am looking at him) and he is extremely good at generalizing his skills. In fact it just hasn’t been an issue. If he remembers how to do something, he can do it anywhere and with anyone. Other strengths include his great sense of direction (very useful when I can’t remember where the car is), his constant attempts to communicate with us (usually through pulling our arm, pointing, etc) and how calm and generally extremely good-natured he is.

Michael is a wonderfully happy little boy. He has never been aggressive, and has never harmed anyone on purpose (he has punched me in the jaw several times but he didn’t mean to). He loves sitting on chairs at tables, so we do a lot more of his therapy at a table than we would with any other two-year-old. And of course he loves hugs, kisses and cuddles so a lot of his rewards involve things like this.

Michael Has Weaknesses in Many Areas Other Autistic Children Have Strengths

On the other hand he has many weaknesses as well. There are many things he doesn’t understand – his receptive vocabulary is extremely limited. He doesn’t speak yet and doesn’t imitate sound so I’m guessing it will be a while. Speech therapy isn’t on the cards, let’s just say. He also needs thousands of repetitions of things before he learns them and more thousands to keep them in his memory or he forgets in a week.

Michael has a lot of trouble with visuals whether flash cards, matching, or just looking for the right place for his jigsaw puzzle piece. He does things by feel and can’t concentrate on anything for more than about a second.

He doesn’t have any play. I don’t mean appropriate play, I mean he doesn’t even line his toys up or twirl them. He can’t concentrate enough on them. Imitation is a particular weakness so we can’t model things for him and often have to physically prompt him to teach him anything.

We can’t use naturalistic teaching methods with Michael. I’d love to do ‘child-led’ play, believe me. It would be lovely. But he doesn’t lead in any direction and when we have tried approaches like that, the therapists just spent two hours chasing after him with balls and blocks. He does not do well with unstructured time.

Michael mostly doesn’t stim to regulate himself, but because he is bored

With ABA therapy we have helped him develop the skills, so he can physically press buttons and he has the fine motor skills now to play with these toys, but he very rarely chooses to do so. Mostly he runs around the room, watches his iPad and bangs two balls together. This becomes old very quickly, he gets frustrated and starts screaming. His constant stimming therefore does not help him feel better. I know that for many children it is a way of regulating themselves and I have tried to use it this way. But Michael over stimulates himself by stimming too much and yes, that is a thing at his young age.

So stimming is not something that calms him down, it rather seems to be something he is compelled to do because he simply doesn’t know how to do anything else. Since he can’t regulate his own stimming (so he doesn’t know when he has reached the point when he has enough stimulation and stop) I have to stop him myself once I can see he is getting over stimulated. We will be going to an occupational therapist soon to help him (and me!) learn how to regulate this better.

Michael also has no obsessive interests. He jumps from cartoon to cartoon and can’t concentrate for very long on books. The only things he likes are sensory – watching an iPad, going on the swing, being hugged and tickled. So we work with those. We are working on books. At the moment we are up to one minute, although we have a few books that he quite enjoys looking at. I am not sure he understands that the pictures in the books mean anything or what they are supposed to represent though. Time will tell. Hopefully he will get some interests soon!

It Can Be Painful To Watch Another Child Progress More Than Yours

Many of these experiences will be familiar to some parents. Many will be entirely different. I joke that Michael isn’t just different to other children with ASD – he is the opposite to most of them

Michael is slightly to the right of the middle of the spectrum so I can see both sides of many debates. I know the pain of looking at other children on the spectrum easily do things that Michael may never be able to do. Kick a ball while in the middle of a soccer game. Ride a bike or a scooter with no help. More importantly, he doesn’t understand explanations so he gets upset a lot more often than he needs to. For example today he had a little tantrum because I couldn’t let him go outside (the gardener was mowing the lawns and the petrol just smelled so much.) With another child I could have explained that we will go out soon, but first we need to wait. Michael wouldn’t understand that so I just had to keep him busy with other things until they finished.

On the other hand, I have seen him learn things, both through therapy and on his own. He is delayed in everything but he is learning and some things quite quickly. It is such a beautiful thing and I am grateful I get to experience it. Michael being happy, Michael’s laughter and pride in his own accomplishments (and they are real accomplishments!) are the best thing to witness. Some people never do get to see that. I am sure there are parents that find it painful to watch what he can do as well and yet they keep supporting us. I thank them for that because like I said before, I get it.

Always Err On the Side of Kindness

I think the most important thing we can do for one another is offer support. If you disagree with something you read, wait for twenty-four hours before commenting. Sometimes, don’t comment. Just move along. Trust me, it is possible. And think – do you really know what this person is going through? Because I understand that having a child or being a child with Aspergers is difficult, but it really is a whole other order of difficulty to have a child with severe autism. And then there are the serious health issues like epilepsy or gastrointestinal disorders. Plus the fact that people just react very differently to being in the same situation.

But above all, whatever you read and however it makes you feel, be kind. Maybe that parent or person is struggling more than you and not coping. Maybe they are writing a whole load of rubbish. And as I said before, disagreement and debate is completely healthy. It’s how we progress, and it is very important. But never write anything that you wouldn’t say to someone’s face. And always, always err on the side of kindness.

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