Delayed processing as part of autism

Delayed processing as part of autism


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.

Visual Aids - a picture exchange communication system folder
One of Jack’s PECS folders

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.

Coronavirus Social Story

Coronavirus Social Story

I wanted to share a coronavirus social story, that was kindly sent to me by someone on twitter. Obviously it is a very worrying time for everybody at the moment. These are unprecedented times in all our lives, and after the announcement from Boris Johnson last night. That we are basically in lockdown, it is getting more and more “real”.

The challenging behaviour from Jack over the weekend rose dramatically, from where it has been recently. It wasn’t a surprise, and I knew it was down to what is happening. Lily is also showing signs that she is struggling. First thing Monday morning she was sick in the bathroom, the first day of no school. This is an ongoing issue with vomiting, that we are not sure if it’s anxiety or allergy related, which I’ve talked about before.

Something amazing

Jack did something amazing yesterday, after sitting down and talking to him. He told us he was scared and confused by the coronavirus. This is such a massive thing. A lot of the problems Jack has, come from not being able to communicate effectively, or express his emotions. So for him to do that was incredible. 18 months ago I would have thought it was impossible. It’s yet more evidence of how far he has come.

He also asked for a Coronavirus social story, to help him understand what is going on. We told him we would get one for him. Last night a very kind person emailed me one. It is very good and Jack is very happy witH it. It’s so important to find a way to explain what’s happening.

Jack had already calmed down and appears less anxious. Of course it will take continuous reassurance, and revisiting this social story. But we will do whatever it takes to make Jack and Lily feel safe.

I thought it only right to share the coronavirus social story in the blog, for as many people to see as possible.

There it is, I hope people find it useful. The autism and SEN community on twitter can be a wonderful and helpful place, as was proved again here. If you want to make your own social story for this or any other subject, I highly recommend Twinkl as a great resource. I hope everyone is coping well in these difficult time, stay strong everyone. Please feel free to share any resources or ideas to help people get through this difficult time. Thank you.

Will the kids be going to school?

Will the kids be going to school?

It’s been a long and stressful week. Mostly around one Question. Will the kids be going to school or not? For some, that question was answered on Wednesday, and at least the situation was clear. We however were in the group of people, where things remained unclear and confusing.

Jack’s situation

Jack has an EHCP and attends a SEN school, which put him in the group that would still go to school. So that makes thing clear right? Wrong! Two days of mixed messages, uncertainty and confusion coming from all quarters. I thought he was staying in school, then I thought he was going to be staying home from today. Finally this afternoon the decision was made that he would stay going to school.

His whole class are staying in school, and we decided for the sake of his routine he will still go. He’s already shown signs that he’s worried about what’s going on. To pull him out of school now, would escalate that and not be good for him. So unless we need to self isolate, it’s business as usual.

Lily’s situation

It’s been just as complicated and stress with Lily. First I though, she finishes school on Friday and that’s it. Then because we have a disability social worker, we thought we were expected to send her to school. We tried to get clarification on this, and we had to wait for answers. Basically no one was really sure what we were meant to do.

The answer came back today. Lily is now off school, but we can send her into school if Jack is at home and struggling. For example, if his anxiety was causing him to be excessively violent, causing the home environment to be dangerous. With Jack at least for now still going to school, that’s not an issue.

How’s everyone finding the situation?

I know it’s not just us, and this is a stressful time for everyone. Will the kids be going to school? Has been the question on all parents minds this week. Lily’s school have sent some work home for her, but the question of how to keep her busy, entertained and still learning is the one that now weighs heavy. At least I know art will keep her happy. How is everyone else feeling? How are you going to keep your kids busy? Any ideas are most welcome. Drop them in the comments.

a nice quiet day

a nice quiet day


After the last few days, today we needed a nice quiet day. Natalie has to take her car to the garage. So with the kids at school. I had a good few hours to myself. I spent some time working on the website. And then did some much needed housework.

The house is packed full of god knows what. So I am trying to go through it and de clutter, and organise it better. It’s proving a slow process. Especially as Lily won’t let you get rid of anything. She even wants to keep empty sweet wrappers. Usually if you remove smaller things without her noticing. She doesn’t realise. But with her toys. It is more difficult, and starting to become a major concern. If anyone has any experience dealing with this. Then some advice would be most welcome.

The kids both came home from school happy, and wanted to play in the garden. So it was more of the Cricket/baseball game for me and Lily. Whilst Jack was pretending to be some sort of ninja. It was cold so we didn’t stay out too long.

I do try and get Jack to join in the sports games at times. But if you ask every time. He starts to get annoyed. I just like to remind him he can join in with us if he wants too.

Jack spent the rest of the evening in his room. Whilst Lily watched TV downstairs. All was calm and today was a nice quiet day. These can be rare, so you always have to enjoy them.

Dad Does Autism