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.

Our Autistic Valentine’s Day

Our Autistic Valentine’s Day


Today’s post is about Our Autistic Valentine’s Day, a cute story is Lily and her “boyfriend” at school. It’s the last day of school before the half term holidays, and Jack mentioned his Nintendo Switch this morning, but he went quite happily without it. Which after the problems we’ve had this week that I highlighted in my last post. It was a major success, so it has been a good end to the week. Lily is off school again, but she just wanted to play computer games today. So I took the time to have a sort out around the computer desk.

Our dining room is supposed to also be the office, with Natalie working from home as well. It needs to be a functional working space, whilst also being usable for meal times. Currently it’s fit for neither, and resembles a bomb site more than anything else. But at least I’ve made a start on it.

Autistic Valentine’s Day

Today of course is Valentine’s Day. Lily despite only being 8 has a boyfriend. As much as I say aren’t you just friends, they won’t have it. He came round to see Lily before school, with his mum and dad, to give her a card and chocolate rose. Lily had a card and had baked a heart shaped cake for him.

It was lovely to see. It scored epic levels on the cute-o-meter, and it really cheered her up. Which was great after how poorly she has been. Last year Jack got a bit upset that Lily got a card and he didn’t. At his old school there were lots of girls, and at least 2 that he was good friends with. At his current school his class are all boys, from the few times I have been there I don’t remember seeing to many girls at all. So the opportunity for giving and receiving a Valentine’s card are pretty much non existent.

Jack certainly hasn’t mentioned any that he has got to know. Jack has already completed puberty. It came very early, we think possibly because of medication he has taken. It is no secret that he is very interested in girls. He did go through a stage of wanting to talk to every girl that walked past the house. That seems to have called down a bit now, but when we are out he is always looking at the girls he sees.

Due to his size, he is looking at girls that are a lot older than him, and to be honest I’ve seen them looking at him too. As he is still so young in his ways, and his communication skills aren’t great. When he tries to talk to people when we are out, people have a difficult time understanding him.

He has told us that he wants a wife and kids when he is older. As with everything, we tell him everything is possible. At this stage in his life we don’t want to be telling him he can’t do things, but this is one of those things. That in the back of my mind I wonder if there is any possibility at all.

It’s hard to see right now. And would take some major behavioural changes for it to become even a possibility. If you google, can autistic people…one of the first answers that comes up is, love. There was a time when it seemed the assumption was that they could not. Jack and Lily clearly can, and I think everyone does. They might not be able to have a loving relationship in the the conventional sense. Which some autistic people are unable to do, but they certainly will show love in their own ways.

For now Lily has made Jack a card to cheer him up, and he will also have a card from a secret admirer for him…

Dad Does Autism

Anxiety or Allergy?

Anxiety or Allergy?


Today’s topic is anxiety or allergy? First though we managed to get Jack to school without his Nintendo Switch again. Though it was more difficult today as expected. He was more argumentative than yesterday. Because we purposefully didn’t charge it last night. We told him it needs to stay at home. To be charged.

He normally reply’s with he can charge it at school. But before he could. I added that his parcel won’t come if he doesn’t go to school. He got an amazon voucher for his birthday. He ordered a Harry Potter Lego set. (Affiliate link)He’s excited for the Lego. Especially as it comes with a Voldemort. But he’s also excited to be getting a parcel. He has always got excited by receiving mail addressed to himself.

Anyway, the double tactic work. He begrudgingly went out the door in a bad mood. What I find funny though. Is when his transport assistant says good morning. He cheerfully replies back with a big smile. Obviously it’s only me who is the bad guy.

Lily is sick again

Lily was due back to school today. But she was sick again. I’m getting very concerned as to what is going on. It doesn’t look like a stomach bug would normally look to me. Which leads me to wonder what else it could be. 

The ideas that spring to mind. Is it is anxiety related. Her anxiety is certainly at a high level at the moment. But enough to be physically sick? The other is an allergic reaction. Lily has a history of allergy problems. The list of things she is allergic to, is ever growing.

Whatever the problems is. Hopefully we get is sorted soon. And Lily feels better. Lily will be off for the rest of the week now. With the 48 hours sickness rule at school. Then it’s half term school holiday next week.

We’ve got some arts & crafts and experiment type stuff to do in the holidays. I might have to get some out this week. To keep Lily entertained. Today it has been Jenga. Which is still fun. I don’t have a very steady hand. So I normally lose without having to let Lily win. To keep her happy. We have also been playing LOL monopoly. Which I’m not so keen on. But Lily enjoys it.

We have been having a “game break”. But I’m now being called back again. The things you do to keep your kids happy!

Dad Does Autism

Be careful what you say

Be careful what you say


There was no leaving the house today. At some point yesterday Jack heard something about the storm coming across the UK. I’m not sure exactly what, but it was a reminder of the importance of being careful what you say around autistic children.

I don’t know if he overheard the weather report or me and Natalie talking about it.  Last night Jack wouldn’t go to sleep, because he was worried about the storm. He was sat with his phone on the weather app, continuously reading it off to us . He was under the impression that we were in great danger, because it said “warning” in a big red symbol on the weather map.

We told him that it was fine. The storm wasn’t here yet, and when it is here, we will look after him. He came back downstairs a few times. We just repeated the message, finally some time after 1am he finally fell to sleep.

Today

I was up late today. When I checked on the kids, they were both in Jacks room. The wind had picked up. Nothing major, but stronger than anything Jack and Lily can probably remember. I could tell they were a bit nervous. They were distracted enough playing computer games, so I left them to get breakfast ready.

After breakfast Jack kept getting more and more agitated. Kept saying “I don’t think we can go out” and “I don’t think we can see Mack.” The Sunday routine of going to my parents, and seeing their dog Mack.
I s something Jack really enjoys. So it was clear it was really bothering Jack. He was starting to get short and snappy. He got annoyed with the TV and his phone, knowing what the problem was we sat him down for a talk. With the thought in our minds, be careful what you say.

Staying home

We told him that we are all staying at home today. We will all be in the house and perfectly safe. Thankfully this reassurance calmed Jack down. The anxiety just seemed to drain away, and he’s not been bothered since. Even watching from the window when the rain and wind really whipped up.

Lily didn’t say much until she started crying in the afternoon. When she said she was scared of the noise of the wind. It was getting loud at times, so it wasn’t surprising she found it difficult. As long as she had someone sat with her, she was alright.

The storm itself would have caused some problems. We don’t have many here. I can’t remember that last time we had anything significant. Even this one hasn’t been too bad, so far. It was another reminder to be careful what you say, and that what Jack and Lily hear they will take literally. He heard the word danger. He then thought he was in immediate danger. It took a lot of convincing to get him to think differently, and even then it’s only because we have stayed in the house.

Be careful what you say

This sort of thing happens a lot, especially with me. I am very bad at not thinking about what I am saying. One example that drives Lily mad is, since I was a kid, and I guess it came from my parents. I have called a persons nose, a beak. Every time I say beak Lily just looks at me funny. Tells me I’m stupid, says it’s a nose not a beak, and then tells me I don’t make sense. I just can’t get out of the habit of saying beak, as much as I try too. To the point it’s annoying me now. Does anyone else have these problems? Or do I just need to get a grip?

Lily is really starting to get very annoyed with it. So I am trying to stop it. But a 30 year habit is not easily broken. Trying to talk so autistic people can not just understand you, but also not become confused is so important. Yet so difficult when you have slang terms, idioms and metaphors engrained in your every day language. The other day I kicked open the living room door, and shouted out “there’s an elephant coming through”. When I looked at Lily she looked completely bewildered. I realised what I had done, as Lily cautiously leaned over to look through the doorway. She then turned back to me looking confused and said “Where?” So I was explaining myself again.

Their is an autistic author called Michael Barton. He wrote a very good book called, It’s raining cats and dogs. Which I found helped me understand the difference between how I hear things, and how the completely logical mind of Jack and Lily hear things. It’s so important to be careful what you say, as confusion isn’t good for anybody. Like I said. I’m still not perfect, but as with everything when you are bringing up autistic children. I am always trying to learn, and always trying to get better.

Dad Does Autism