One of the key things that lots of autism educators will tell teachers to do is to keep a strong routine going in the classroom for their autistic students. Keeping things the same so that children on the spectrum won't get upset is acknowledged to be pretty important.  

While I agree that it's true, I think it's only true to an extent, and I think it can be too easy to rely on it as a 'prop' to keep ASD students quiet and easier to manage.

Typically, ASD people tend to seek out routines because they are predictable and safe. Changes and challenges are hard to deal with, so people on the spectrum avoid them if at all possible.

The problem is that ASD students need to be challenged by changes if their autism is going to be remediated. In other words, if they are going to learn to think flexibly, they need to be given opportunities to think flexibly.

So while a routine may be necessary to keep anxiety levels down, it's good to make small changes within the routine wherever possible. Bigger changes can come as flexible thinking grows. 

If a change is too big, Bright Eyes lets me know by using fight or flight. He either gets aggro and upset, or he avoids and runs away. Where I have to think flexibly myself is in analysing the changes I've tried to make. Too big? Too fast? Too much? Where can I break this down a bit more?

When helping an ASD child learn to think flexibly, it's so important to go small, slowly and quietly. But it's also important to do it, and not just leave them to their routine.

It's almost as though he's sussed it out, realised that it's not too bad, and there are good things about it, so he can make it. 

On Friday morning I sat next to him at 7am and said, "So, do you think you might have a crying morning about school, or will it be happy?"

He looked at me as if I was nuts and said, "Happy!"

For the first two days it seemed fine, but in the last two days we have noticed the rise of the anxiety levels again. 

I think it definitely makes a difference.

I am worried, however, about the fact that Bright Eyes seems to have put on weight in the last month or so. I think it may be due to the meds, so I am trying really hard to put fruit forward as the only option for snacks. 

His class ran the assembly and prsented work to the rest of the school and he felt comfortable enough to sit with everyone in the front of the room on the steps for the whole time. That's a huge step forward.

As if that wasn't enough, he also read into the microphone from the worksheet he had brought. The class all shared about work on emotions they had been doing. When he could see his turn coming up he put up his hand and said, "Mrs S, can I read mine now?" and then read, "I feel happy when I have a toy called Brum."

As if that wasn't enough, he stood up with the class when they presented a song, sang along to it, and did all the actions.

He lasted right until the end and Mrs S was kind enough to give him a special certificate during her class award presentations for 'Great Assembly!' He was obviously delighted and excited and came racing out to me afterwards to show me. 

As for me? I sat up the back smiling my head off with tears misting up my eyes. What a great day.

It's the work of some RDI consultants from the US and they've done a good job in helpfully explaining the difference between remediation and compensation* and then giving practical ways schools and teachers can help remediate autism rather than just compensate for it. 

If you're into RDI at all, it's a must-read. If you're looking for practical help in dealing with tantrums, obstacles, problem solving and all of the other things that go along with autism, it's essential. 

*compensation means finding ways around the problem. Remediation means actually remedying, or fixing the problem. So with autistic children, compensation might consist of having schedules, timers and on-hand helpers all day. Remediation would mean guiding them slowly to learn how to think, solve problems and take on challenges. Sometimes we need compensation at the same time as doing remediation, but as remediation progresses, compensation should decrease. 

Tantrums are a special feature of daily life with an Autistic Spectrum child. From the age of two and a half to about four, my son Campbell had, on average, six or seven major tantrums per day. They involved kicking, screaming, head banging, running through the house, throwing things around and other generally uncontrollable and extremely undesirable behaviour.

A number of times, I tried to explain to people around me how difficult I found it dealing with the constant outbursts. I’d be greeted by knowing looks from parents of other small children. “Oh, yes,” they would say. “Just the other day my Jack threw one in the supermarket. Soooo embarrassing!” The implication was that there was nothing different about my autistic child, because every child throws tantrums. Tantrums are normal.

And that is true – to a degree. I had already experienced them with my older daughter Jemima, who had been an expert at the pinching, hitting and hair pulling kind from the age of two. At the age of three she wrote ‘No Mummy’ on the wall when something didn’t go her way. (It was in black permanent texta, but that’s a whole other story.) Up to the age of five she was having regular screaming matches with me when she got overtired, which unfortunately was a lot of nights in a row.

But there are differences with ASD tantrums. One of the differences is that they are almost completely unpredictable. I could usually understand why my daughter threw her wobblies, but even now I can hardly ever pinpoint the exact reasons why Campbell explodes.

One morning, when he was three and a half, we had been outside and had just come back inside the house. Campbell sat down, took two shoes and one sock off, and then just began crying. He yelled for his sister and dad who were out at her hockey game and then screamed, “James’ room, James’ room,” at the top of his lungs. At that point he ran sobbing to James’ bedroom where he climbed into the cot and continued to cry for the next half hour.

I had no idea what had happened and I still can’t even try to guess at it.

The other difference with ASD tantrums is that it is almost impossible to talk or reason the child out of it. Campbell is still only now, at the age of 6, learning that he can use words to express his anxieties. Back when he was smaller, with much poorer receptive language, it was useless to say what I would have said to my daughter at the same age, which was something like, “hey honey, next time you’re sad, you can use words to say how you feel.”

I think ASD tantrums are like the tantrums of a 12 to 18 month-old in that you’re dealing with pure emotions that are completely out of the child’s control. You are also dealing with a child who is constantly anxious and overwhelmed – much more so than with neurotypical children. I once heard an autistic adult say, “I still feel like I’m constantly on the edge, on the precipice of everything,” and I realised that when Campbell was younger, his tantrums were his reaction to falling off the edge.

With many neurotypical children you can often head the tantrum off at the pass, but with an ASD child, there’s only a tiny window for bringing calm back to the situation. With many neurotypical children, you can often talk about the tantrum once everyone is recovered. With ASD children, it’s very difficult to revisit anxious feelings. With neurotypical children, you know that tantruming is a stage that every child will go through. It will almost always be over by the age of six. With an ASD child you don’t know when, if ever, it will stop.

Cows and rivers

We took a walk down through a cow paddock to the river at some new friends' place with a whole group of people on Sunday. The aim was to swim in the river, and Bright Eyes was very keen to set off. But once we saw the cows, it was a bit of a different story. His anxiety levels rose and the majority of the walk involved me listening to his anxious bleats. "Cows are dangerous. I'm going to the river tomorrow. This is not for boys. I'm not going here," all said at high volume.

This is not unusual, and I was prepared to ask someone else to watch the other children and go back with him, but I didn't need to. Despite the noise and the fears, he kept moving forward. And when he stopped walking two or three times, he was happy for me to pick him up and keep going. I knew that once he turned to run away, it would be all over, but it never reached that point. The walk itself took about 10 minutes, and he didn't falter. 

Of course, once we got to the river, everything was fine. He even coped with swimming in his clothes. 

Wombats and camping grounds

There is a wonderful public camping ground 10 kms from our place where you can enjoy the amazing sight of wombats coming out to graze every evening at dusk. We have been there a number of times, but every time, Bright Eyes has refused to get out of the car. For some reason, he's scared of it. We took our little nephew there to see the wombats tonight. Bright Eyes wasn't keen, but he did eventually get out of the car, stay out of it for 20 minutes or so and come for a short walk with me. I said, "I just want to see one wombat, and then I'll come back to the car with you." We saw it, and came back. It's a small step to helping him see that it's not a scary place, and that he can have fun there. 

Wow - he has legs!

The temperature reached the mid-thirties on Sunday, so for about the millionth time in the last three years, I suggested to Bright Eyes that he would get hot in his regular track pants attire and that he might like to wear shorts. Usually he yelps in protest and sticks to his full-length strides, but this time...

... HE SAID YES!

Quick as a flash I leapt up the stairs to dig out the size 6 shorts I had hidden in his closet, awaiting this day. I pulled them out and bounded down to show them to him. He chose a very groovy navy blue pair and wore them all day. 

And it wasn't a one-off. He wore shorts again today, and has informed me that he will be wearing shorts to school on Wednesday. 

It's a pleasant surprise to look down every so often and catch a glimpse of his white little legs. I really don't think I've seen them in about three and a half years. 

Self-Talk

This is where we learn how to talk to ourselves to reduce anxiety or help us do something we feel we can't do. For example, in a traffic jam, we might start getting really upset and thinking something like, "This traffic is terrible. We'll never get home!" Self-talk is where we say to ourselves something like, "Don't worry. It's always busy at this time of day. We'll get home eventually. Next time I can leave earlier and avoid the rush."

This is very hard for Bright Eyes, not least because he doesn't actually start by acknowledging the problem. He starts by denying it.

For example, the other day when he didn't want to go to school, instead of being able to say, "I don't really want to go to school. I'm feeling tired/worried/whatever," all he could manage was, "It's not Friday. It's Saturday. I'm not going today because it's Not Friday." He tries to alter reality so that he can avoid his anxiety.

The first step that I see is to help him acknowledge the reality of the situation. Then, he can start to engage in self-talk.

To help with these issues, I have introduced two new characters into our lives. Nervous Ned lives on my hair and jumps over to Bright Eyes' head sometimes to tell him things that make him panic. Silly Sally also visits with Nervous Ned and tells Bright Eyes things to trick him and make him say things that aren't true.

By drawing attention to the 'tricks' that Silly Sally is saying, I can get him to say things that are more in line with reality. By asking him what Nervous Ned is saying, I can get him to calm down more quickly and gather his thoughts without the anxiety.

(By the way, Nervous Ned is not my invention - I saw him demonstrated on an RDI resource video clip. Silly Sally is all my own however!)

I think it's a smart invention. Hopefully he'll be able to start telling more 'truth' about his feelings and his desires. I'm not saying he's deliberately lying, not by any means, but I do think he's now at a stage where he can start to articulate more precisely what is wrong instead of going into denial-type panic language at the first sign of anxiety.

Is anyone out there an artist? I'd love a sketch of Nervous Ned and Silly Sally if you feel inspired!

During the school holidays I said to him, "When you get back to school, you can ask your friends a question. You can say, 'What did you do in your holidays?'"

It was a concept that was completely new for him. He looked at me with wonderment, and asked, "What will they say?"

I am going to institute a new dinner time game called 'Ask a Question that We Don't Know the Answer To'. We'll all take turns thinking up a question that we can't possibly guess at and see whose can be funniest. Hopefully it will get him thinking in terms of finding out new things, instead of finding out things he already knows.