So we are into the second week of the kids being at home. Since my last post things haven’t been going quite so well. Jack has delayed processing, understanding delayed processing as part of autism, and how it effects Jack, was something that took us a long time to get our heads around.
To put it in broad terms, an autistic person may experience a delayed response to sensory stimuli. What this means using Jack as an example. When I ask Jack a question, there is usually no response. It’s as if he hasn’t heard the question. I normally ask again, as Jack usually has a TV or some music on. Just in case he didn’t hear. But it is highly likely he did hear the first time.
Echolalia and learned responses
He just needs a lot more time to process what has been said, than you would typically expect from a child. Jack can give immediate responses, but these are what are called learned responses. Which is where his echolalia comes in. Jack can learn a conversation, and repeat it the next time the same situation comes up. But this is like someone on auto pilot. You are not getting his true thoughts and feelings. We have had many “disagreements” with “professionals” who have worked with Jack regarding this.
Getting Jack to express those true thoughts and feelings, hasn’t been an easy process. We are getting there slowly, and Jack is much better for it. Learning ourselves when to use social stories and PECS took time. They are so important and have been vital to Jack’s progress, and his ability to communicate.
As a parent it’s not easy to always remember this. Sometimes you can forget that a simple question like, what do you want for dinner? Is not so simple for an autistic child. Jack has to be given options to choose from, otherwise you just get a blank look and maybe a “don’t know”. Start with options of food he knows, even showing him the options, and he can give you an answer fairly quickly. Even in a situation of high anxiety or meltdown, though it’s likely he will respond with nods of the head rather than words.
Delayed response to situations
This delayed processing as part of autism, also comes into play, with situations that happen. Which is why it comes as no surprise to me, that Jack was fine with the sudden change last week. But this week he is finding it very difficult. His anxiety has gone through the roof, and he’s become tense and argumentative. It’s like it has taken him a week to process what is happening, and everything that has changed.
We are now prepared for this, and a week isn’t actually a long time. In the past Jack has had spikes of behaviours that stemmed from an incident that has happened months before. Which left us and everyone else baffled, until we finally worked it out with Jack. Knowing about the delayed processing, and just how long the delay can be has certainly been a great help. Now when Jack is unhappy, we know to trace back for months to find the solution if necessary.
What’s happening now?
Jack finding things difficult this week, in one sense can be a good thing. It’s only taken a week for him to start to process what’s going on. So we can now work on bringing his anxiety down, and getting him in a happy place.
The one issue with that of course is these are unprecedented times. We don’t have the answers to the questions he wants answering. When can he go back to school? I don’t know. Will respite be back soon? I have no idea. When can we go and see his grandparents and their dog Mack? I don’t have clue. Just like I have no answers for him when he asks about going bowling, or to the cinema.
He is getting frustrated that I don’t have any answers for him, and he’s becoming very argumentative at times. To be honest I’m getting frustrated myself, the last two days have been hard work. There’s no break from it either, no chance to recharge. The outlook isn’t looking good for that break coming any time soon either.
Jack was fairly calm and relaxed Tuesday evening, so hopefully that’s a good sign. When his anxiety has been down he’s been really good. He’s been playing with Lily more than usual, and spending more time out of his room than usual. I guess being at home all the time, staying in your room all day gets a bit dull. One positive of this coronavirus stuff, is we are doing activities together more than we would usually, which is nice.
Free sensory guide
Lastly I would like to point you in the direction of autismspectrumteacher.com where you can currently get a free 12 page guide to “Meeting Sensory Needs” by clicking here.
It is aimed at teachers in the school environment, but having read it there is certainly value in it for parents as well. As we know only to well with Jack, and are beginning to learn with Lily. Meeting a child’s sensory needs is so important. Get that right, and everything else will start to fall into place.
There’s some great information and ideas in the guide, which is the first chapter of an upcoming book. Though it’s based in the classroom, you shouldn’t assume your child’s school is always aware and doing these things. So arm yourself with information to take to them, that’s what we have always done and will continue to do for Jack and Lily.