DS (ASD?) is scared I'll disappear. What can I do?

[Gracie123]

We've been told our 3yo son almost certainly has ASD (in the process of assessment after a paediatrician picked up on it at an appointment a few months ago).

We're going through a really odd phase at the moment, and I don't know if it's an ASD thing or not, or how I should be handling it.

He's my first child, so I find it hard to know whats normal.

About a month ago he got really clingy all of a sudden and started talking about me disappearing. Apparently someone told him I was going to disappear (?) but he refuses to say who.

It's been getting steadily worse and worse, to the point that it now takes him 3 or 4 hours to go to sleep because he has to keep checking I didn't leave the house whilst he was in his bed. He is exhausted. We both are.

I can't even go to the loo without him panicking that I've disappeared. He follows me everywhere.

He loves playing out on the field with his daddy, but refuses to go outside now without me in case I disappear whilst he isn't home.

What can I do? Is this just a phase he will grow out of? It's getting worse and worse and I'm swinging between frustrated and heartbroken. Neither of us gets any sleep because he wakes up screaming every couple of hours until I go and tell him I'm still here.

He used to sleep really well, it's only since the disappearing thing that he has started waking up.

Hi gracie.. glad you found us.

I don't really have any advice other than to say you need to keep talking to your Ds, reassure him all the time that you are there and you are not going anywhere.

My Dd3 has always stuck to me like glue and it has been difficult over the years.

I hope this is a phase and that your son begins to understand that you are not going anywhere.

I really can't understand where it came from. He never used to be bothered who he was left with, and then one day he got this stuck in his head, and now he can't sleep with worry about it.

The problem is, the less sleep he gets, the harder he finds it to sleep. It's like he gets over tired and we get stuck in this cycle that I can't break.

Arrrrrgggggghhhhh!!!!!!!!!!!!

Bless him, it could be because he is getting older and understands more about what is going on around him.

I hope some one comes along with some more knowledge.

Sleep problems are not something I have had much experience of although Dd3 does have a lot of nightmares and sleeps badly when she is worried about something.

She has a night light to help her if she is scared.

Hope someone comes along soon. good luck

Would he be comforted by a photo of you next to his bed do you think? If you can get a nice one and laminate it then he can't easily destroy it (knowing what mine were like at that age!). Also have you considered maybe one of the build a bear workshop bears? They let you record a voice when you "make" the bear, so you could do that for him with your voice in it for him to hear you and reassure him if needs be.

Hi,
My DS has AS when he was 3 he was convinced I would die (Grandad had just died) it took about 6months of constant reassurance every time he asked before he finally changed conversation topic. Then during his reception year, Madeline disappeared, which his school made a big deal about, for a long time he had to have the doors locked on the car, never have a window open in the house etc incase someone stole him out the car/house :(. Again it was a phase that eventually passed.
I just gave continual reassurance whenever he mentioned it.

Thanks. I might try the photo thing first (we have soooooo many bears in the house and asthma is a problem for both my kids!)

I'm really glad to hear it was just a phase littlemiss.

We are also not allowed to have any windows open in case a bee might come in

Partly it can be a problem many of us have with understanding time. If someone is gone for a few minutes, it can feel like forever, because our brains may not be able to calculate time properly. A visual chart showing what will happen when, and who's where, can help some of us 'see' time and locations in ways that make sense to u. Egg timers etc designed for autism can help us understand that we have to wait x time for something to happen.

Partly it's us needing lots of repetitions of something before our brain has enough data to prove that it's true. 30-100 repetitions is very normal, so it might take 30-100 nights of proving that you haven't gone before his brain realises that's a big enough sample of data to make it true. We're often very logical and fact-based (still generalising) from a very early age.

I'm mindful of you saying that asthma is a problem, but one solution that worked for some families is a support animal of some kind who can be a source of comfort for a child when they are out of sight of their parent. Some dogs are non-allergenic, for example. Worth talking to autism charities about expert help, too - they may have some useful tips to pass on to you.

Funny you should mention dogs...

I was about DS age when I was attacked (badly) by one (I nearly died) and he is absolutely terrified of them. I don't know why he would be (I've never told him they're dangerous) but I wonder if he picks up on my nervousness when they come near him?

It's not just asthma that prevents pets though. Unfortunately our landlord (DH employer) won't allow us any in the house.

Thanks for the input about needing a large enough sample data for something to be true. That's a really helpful insight. I'm very new to all this (didn't really know anyone with autism before) so I sometimes don't really know how he thinks etc... And I'm still learning why he does certain things.

If it's an assistance animal of some description, landlords have to allow them otherwise it's against the law. But I take your point about dogs, and those are the usual sort of assistance animal in the UK. Mine's brilliant.

Amber, do you mind if I ask what it is exactly that the dog does for you? How does it assist you?

I feel silly asking, but I only jut found out you can get epilepsy assisting dogs and I found it fascinating that they are trained to smell a hormonal shift.

He helps me with socialising - easier to focus on a dog than a tricky free-range conversation, and it means a lot of other people are happy to come over and chat to me. He also helps me break concentration when I've been doing something too long. Plus he's taught himself to warn me if the phone goes and I don't hear it, and he fetches me if the food is starting to overcook. Not an official assistance dog as there's no such thing for adults with autism in the UK as yet, but trained dogs do a good job.

Wow. Sounds like a smart dog!

I didn't realise there was such a thing as an official assistance dog. I thought they were all just trained dogs. Whats interesting is I think DS uses his little sister for most of those things (not the food cooking, obviously) but he finds it much easier to socialise with her around (everyone coos over a baby and he gets to answer lots of easy questions like 'what's her name' and 'is she your sister?' etc) and she can be a welcome distraction if he is getting too intense over a particular task. He gets frustrated easily with things that he can't do (like trying to hold a pen and draw a recognisable number) but I can usually distract him with 'I think DD needs you to help her with this story. Could you read this book to her?' or something similar and he totally calms down. He really is great with her.

Yup. Have a google of Dogs for the Disabled and also their PAWS scheme - they are doing a lot to get assistance dogs into the lives of any family who think they could do with one.
Hurrah re his dsis!!
Is it worth getting some templates for numbers so he can draw the number through the template rather than have to figure it out 'freehand'? I used them a lot as my handwriting skills were appalling.