Autism advice while we wait..

[wonder456]

For our 7 year olds autism assessment. We originally went to the clinic as our son was having terrible separation anxiety from his dad.. at the end of the consultation the clinic told us they think we should have him assessed for autism..

We won't know the results until end of January but in the meantime I'm struggling with knowing how to help him..

He seems to be much better with more screentime over the last few days - usually he only gets an hour a day but we've let him have a lot more and he's been much more chilled out. But when the screen is off it only takes about an hour before he has a meltdown.. we won't know what it's about and he can never tell us what's wrong, so
u end up putting a screen on again to keep things in the house calm..

He gets so angry and cries for so long.. it's so hard to know what to say.:: I've tried everything but nothing helps.. we can also never get him out of the house. Any outside trips end up to be a nightmare..e.g I took him
and my 1 year old to see a Christmas lights walk- he complained the whole time he missed his dad.. that he was cold (even though he refused to wear his coat...) and moaned at every thing we saw... he never wants to go anywhere and if we do it's miserable for him...

I guess I'm just wondering if any of this behaviour sounds farmiiar to you if you have an autistic child?? I really don't know how to handle things with him and feel like I'm getting it wrong for him all the time..

Any thoughts or feedback is greatly appreciated x

I don’t understand.

You took him to be assessed for ASD and the recommended an ASD assessment?

When my dd was assessed we were told at the screening appointment of her diagnosis

No sorry if that was very unclear...we took him to a child's psychology clinic. They treat all kinds of mental health issues with children.. they usually do an assessment first to discuss what's happening and then work out next steps.. therapy, assessments etc... In our consultation we discussed our child's separation anxiety and how
to help him.. at the end of the consultation the doctor told us he thinks it could be autism and that he should have a proper autism assessment x

My 7 year old son was diagnosed with ASD this year and we had a 4 week wait from having the assessment until getting the results. Have you spoke to school about his behaviour? My son was masking at school, so school didn't really have any concerns but his behaviour as home was totally different. My son can hate leaving the house and everything has to be explained it great depth about what we are doing and how long we will be there. In regards to coats I just end up carrying his coat as he won't wear it but in the middle on the Peak District a few days ago he felt the cold and asked for it. Sometimes we end up doing things separately as we have 2 children and my husband takes one child and I take the other. Christmas has been exhausting due to a change of routine. Our ASD report did include useful tips and a feedback session which helped.

Hi, I am autistic and also teach children of this age and specialise in supporting neurodivergent children. There are lots of things I could suggest but I'll give the ones that jump out most from what you've said. I'll tell you the area this links to for each one so you can have a read up on it if you want to. These are all tried and tested and I have seen amazing results with them.
Visual timetables and using "first and then" verbally when you need to get out the house or get a task done are really helpful. This is linked to executive function difficulties which is what makes getting ready, following instructions and going new places difficult. Keeping instructions short is key eg " first put shoes on, then wait by the door". Showing a location of somewhere on a map or Google images can help too.
For meltdowns and being able to calm I would have a look at Dan Seigal's model of the upstairs and downstairs brain as this explains it well. If you Google "regulate, reason, relate" you should get the same kind of idea. This is so important with meltdowns.
The feeling cold but not wanting to wear a coat can be to do with introception and the ability to recognise if you're hot or cold, hungry etc. Sensory issues can show up in this way. You haven't mentioned anything linked to him having proprioceptive needs but every neurodivergent child I have worked with has responded well to proprioceptive sensory feedback- sorry a lot of jargon but just giving you the bits to Google. Giving him heavy jobs throughout the day should help regulate him and reduce meltdowns, it sounds ridiculous but it is my most successful trick and makes an unbelievable difference.
Lastly, the separation anxiety can be linked to object permanence which neurodivergent people struggle with. It's a tricky one but I find saying "we can't see him at the moment but he's still there and we will see him soon" helps.

Thankyou so much @beakyboo10 and @ArseInTheCoOpWindow this advice is so so helpful thankyou. I shall look into all of these suggestions.. do you think this behaviour sounds classic of autism?

A lot of his behaviour feels very angry/ defiant.. when we goes out anywhere he just complains the whole time that he wants to go home or wants his dad.. and they are things that I would think he would enjoy - e.g the dinosaur experience at Battersea or Christmas light show - all the other kids are like 'wow' he just is emotionless or complaining - he seems to dislike every minute..the same at west end shows.: his cousins are all clapping and showing enthusiasm.. he just sits- pretty emotionless and doesn't clap.. he just seems to not enjoy any of those things... I wish I could understand why..

You could stop limiting the screen
time? It sounds like
it helps him regulate. Look at ASD courses in your local area as it’s quite diffirent parenting.

Yesh my
son would hate all of that.
too overwhelming.

Give as much notice as you can about going out, mention what you expect the weather will be like and ask if he thinks he will wear a jacket

On the subject of the jacket is the material
irritating him?

Consider buying a pop up tent and put some sensory things in - tell him in advance you plan to get one and tell him it can be his safe place when he is angry

On the subject of meltdowns - if you can, and it is safe enough, just walk away slowly. - you might find he just lies on the floor in a trance/fetal position until he eventually calms down

likewise consider a proper basketball - giving him something to do whilst out including bouncing a ball etc will provide him with strong sensory input

when n the supermarket always let him push the trolley

prepare him for everything you possibly can in advance - visitors, weather changes, weekend plans, food plans etc

If I were you I would be using extra screen time as a reward as he already understands limited time. Eg: if you get dressed straight after breakfast, you can have an extra 15 mins ipad.

I would also spend time preparing him for any outings over the previous days, evening, that morning so that he knows what is coming up. Eg, on Tuesday, we are going with X to Battersea Park Zoo. What animals would you like to see? What do you think the meercats will be doing? We can take your ipad, so you can take pictures, and then we will go to the cafe and you can look up information about the animals on your ipad.

Thankyou so much everyone I'm really grateful for you
reading and taking the time to reply..it's so hard to see him so unhappy and in such a state.. I really want to help him. I will try all of these suggestions thankyou so much..

@Quitelikeit with the jacket he said he's not cold but then it also feels like it's a defiance/ power struggle thing..

On the outings I will definitely try and prep him more...
I can't wait to get this assessment so one way or another we can find out what's going on... when we went to the light show it was really so amazing and wonderful - 100s of different coloured lampshades all lit up in the woods.. I was like 'isn't this so cool?' He said 'what's so cool or interesting about it, they're just lampshades'.. then there were these giant jellyfish all lit up and hanging in the trees in the woods.. they were so awesome.. he said 'they're just balloons on strings'... he said the same about the electronic dinosaurs.. 'they're just puppets'... I just don't get it.. he is excited going to the airport to go on holiday and happy to go to soft play but every thing else he plain out refuses.. or complains about ..I just wish I knew what is going on in his head.. it is so worrying as I feel he just won't ever enjoy things in life...

Also a timetable. Write down the order of the day eg

wake up
breakfast
get dressed
car
dinosaur show

etc etc

lots of notice for everything and he needs to feel in control and know everything to feel safe.

That’s ok his interests are different to other children. He is doing what makes him happy. You have to learn that what makes him happy is different and dont try to force other things. He might enjoy other things at a different age. Or not. And that’s ok.

I so wish this kind of awareness and understanding and these techniques were around when adult ds was a child.

It may also be useful to read up on Pathological Demand Avoidance (PDA). Quite often goes hand in hand with autism. Try not to put too many demands on him. If you tell him to wear his coat, he probably won’t. Also, Oppositional Defiance Disorder (ODD). I’ve worked with children with both conditions.

There's times where it seems they’re being defiant for the sake of it. They’re not, they just can’t help it.

With regard to not enjoying things, unfortunately for some people it really doesn’t seem like they’re never happy. People with autism can struggle to understand their emotions, so don’t always show they’re happy/enjoying something.

Yes agree with PDA and would add that sometimes not enjoying things can be to so with resisting the implicit demand they enjoy themselves. I have a child like this OP and I've had to do a lot of work on myself to accept it so I don't keep forcing him into situations he won't enjoy. He does enjoy his own special interests so try to work out what these are for your child. It sounds like spending time with his dad is really nice for him so I would ask him what he likes most about that

Re the enjoying things, he might not enjoy the things others do. But get massive enjoyment out of his special interests. One of the nice things about autism can be the huge amount of enjoyment you can get out of things. It just looks different.

Thankyou so much everyone this is really such helpful
advice, I am so grateful 🙏 🙏🙏 I'll try all of these suggestions and also look into PDA and ODD.. Once we know the results of the assessment it should hopefully give us some insight into what's going on for him and we can start on the journey to understanding his individual needs.. I think you're right @Alwayslurkingsometimesposting I think I'll have to do a lot of work on myself to accept certain things but I think it will be so helpful for all of us to know what's going on..

Thankyou so much again everyone. I'm really so grateful for your advice xxxx

It's also interesting... DS complains A LOT about many things.. I'm just reading that autistic children don't understand that complaining is rude - This isn’t wilfulness or bad manners — it’s about how autism affects social meaning, intention and context..

I would definitely agree with relaxing the screen time restrictions and generally not applying parenting “rules” from people who don’t have experience with kids with ASD eg forcing them to do/eat things. Instead listen to what your son says he likes and dislikes (I’m sure you do already 😊)

For example this year I told DD exactly what she was getting for Christmas as she hates the anxiety of not knowing what she will get. It works for her even though it felt really strange for me.

Oh bless you he will enjoy things just remember they may not be the things you enjoy. His comment about the lights in the woods - that is him just being incredibly literal and factual, he just sees what is there not the spectacle you see. Take him to something which he’s really interested and he’ll enjoy it but you may be bored rigid!! My ds would hate and art gallery and be bored. My dd and I (we’re all ASD) would love it.

It’s a bit like stimming, if an autistic child is pacing back and forth or rocking, it can be quite agitating and distressing to watch but what you need to remember is that for them it feels comforting and soothing.

I agree cutting down on screen time is essential, it’s not good for any children. We set firm boundaries in place (maybe a timetable like someone else suggested) and even though he may not like it he will understand the rules which is very reassuring for people with ASD. We also had a rule that if ds kicked off when we said it was the end of screen time then he wouldn’t get the next screen time slot and that did help.

PDA is the biggest PITA ever - as a parent (who has a refusing child) and as a child - who may be saying no to something they might actually want! My adult DD has it and it’s a cause of many arguments! When she and ds we did a lot of offering two choices so they felt in charge but were both options which we wanted eg do you want to put your coat on first or your shoes?

BTW we got a million things wrong, not trying to suggest we were/are the perfect parents but the things I’ve said were things which we found worked. I’d also suggest if you are going anywhere which might be noisy/overwhelming, bring some things which might help ds shut things out - noise cancelling headphones/him wearing a hood so he can pull it up and feel safe, if it’s outside, sunglasses to reduce the glare, things like that.

Anyway, hope some of this helps. Please don’t worry; you will have ups and downs but your son can live a full and happy life. My main advice is just to remember what makes you happy and what makes him happy may not be the same thing. That’s a hard won lesson I’ve had to learn. Sending huge hugs to you.

With the caveat that nobody can diagnose anything over the internet, the resistance to organised fun does sound a lot like PDA. It sounds like you're near enough to London if you're going to Battersea - one of the leading experts on this is Dr Gloria Dura-Vila and I believe she offers private appointments.

PDA is not an 'official' diagnosis but it's a useful shorthand for a cluster of behaviours shown by some people with ASD, where demands or change trigger an extreme anxiety response that often comes out as refusal, rudeness or opposition to ordinary demands. Most people with ASD experience some level of demand avoidance (avoiding wearing socks for sensory reasons, for example) but avoiding even "fun" demands is characteristic of PDA.

I would try the following

• visual / written timetable, particularly over the Christmas 'limbo' when routines are all out of kilter
• now and next board - he can use this for requests too, my DC likes to bring the now and next board with current activity and preferred activity stuck on it as this reduces the anxiety of making a request which might get a 'no'
• respond to what looks like rudeness with curiosity - you're right, they are just lampshades, I like how they've been arranged to look impressive though. I wonder what you'd do if you were designing it?
• Look into declarative language
• Think about his sensory profile - is he under or over responsive to loud noises, touch, smells or bright light? Does he like to throw himself onto beds or sofas? Does he seek out small spaces or heavy blankets?

If he doesn't enjoy the west end shows etc then could he go and do something else with his dad if dad is his safe person? What are his interests?

The biggest thing I learned from having a child with ASD was to take all my expectations of what a child would or wouldn't like and what would or wouldn't make them happy and chuck them out the window.

Expect a small window of things they like, with often one or two things that they love obsessively. Make the most of the things they love obsessively to get them to do the things they don't really want to do, but do need to do.

DS has a major aversion to organised fun, I really don't think he's PDA though. PDA is anxiety based, it's a refusal to do almost anything because anything that is asked of you feels like a huge anxiety inducing ordeal. Your DS isn't refusing to do things, he's just not really enjoying them because he doesn't see the point in them that others do. That's typical ASD not PDA IMO.

He's probably struggling right now because his whole school routine has gone out the window, the best thing for him will be to have a very clear routine that you stick to as much as possible at home - with limited but built in time for screens.

I think his behaviour is very typical of ASD but it doesn't scream PDA to me. DS would barely leave his room let alone the house if that was feasible - does your ds have his own room, I'd say that was essential.

Does he dislike his coat? Does it itch him or feel too tight somewhere? Just wondering if he doesn't like the coat and that's why he doesn't wear it and then ends up cold? Or is he unable to imagine how cold it is outside when he is inside and so doesn't wear it because of that - and then ends up cold?

Thankyou @spaghettijunction98 @Coldiron and @LauraMipsumthis is all making a lot of sense to me. With his coat he always just sais he's not cold.. he also only agrees to wear hoodies and black clothes and his teachers at school have referred to him as emo and say he's much more mature than others in his class... I think we have a long journey ahead of us but I feel like its going to get a lot easier.. even comments like this are such a huge support.. I often feel so nervous and on edge in his presence and it makes me feel terrible as a mum...

My DS (almost 8) has a diagnosis of high-functioniong autism.

The one thing that really jumped out at me from your post is the stress surrounding outings. We do a lot of prep (looking at the website and photos usually) beforehand and we've learned the hard way that to make trips out enjoyable, we need to JUST do that thing - possibly with an additional planned stop involving food. So if we're visiting a local museum, we JUST go to the museum and get food from Costa or Greggs (somewhere familiar and quick!) after. No pottering around the shops / stopping at a park / having a wander. We also drive directly to places and park as close as possible to keep things calm - the hustle and bustle of public transport is a bit much, things are far better if we're in our car where we can control the noise / temperature / smells and have books and snacks for the journey.

We also learned the hard way that days out just cannot be full days out with DS. If we go to the zoo or somewhere like that, we leave by about 2pm as you can just visibly see DS has had enough! In the school holidays I now aim for one 'main' day out a week, and then low key park trips / walks to the supermarket the rest of the time. If I overplan it all goes to hell - again, learned this the hard way.

Reducing the demand through all of this does seem to mean that he now enjoys things when we do them!

Also we have a mini whiteboard and write what we're doing each day in the school holiday, so DS can keep track of what's going on. For big days (Christmas Eve and Christmas Day) I basically write out an itinerary so he can tick things off as we go. It helps to give him some control when we're out of routine.

Hey!
I am autistic and can definitely help.

A lot of what you're describing is familiar - meltdowns from what appears to be nowhere, refusing to go out, complaining through every outing, and screens being the only thing that settles him.

Here's what's happening:
Autistic children don't have the same filter between their core and the outside world. Every demand, every transition, every sensory input hits directly at the open core with no buffer. His brain takes in more data because it doesn't filter out background noises, lights, emotional tone etc so all sounds are the same level. The screen is the only thing giving his nervous system a break from constant processing.
When you turn it off, he's back to managing an unpredictable world with no protection and no idea how to regulate. Within an hour, he's overloaded. The meltdown is about everything else that's been stacking up with no tools to help himself.

He can't tell you what's wrong because he doesn't know. It's not one thing - it's the accumulation of demands, sensory input, and unpredictability. By the time he melts down, his system is already flooded.

Outings are overwhelming because they're full of unknowns. The Christmas lights walk meant separation from dad, cold (but the coat might have felt worse), lights, crowds, no control over the route or timing. Even if it sounds fun, for him it was just stress building.

One thing that might help for outings:
Get him noise-cancelling headphones or ear defenders. A huge part of why outings are overwhelming is the unpredictable noise - crowds, traffic, background chatter. If he can control the sound input, it might reduce the sensory overload enough that he can actually cope with being out. It won't fix everything, but it removes one massive stressor.
Also lots of time to process before going out, along with clear ideas of what's going to happen when you leave. If the trip is not necessary, allow him to stay home until he has tools to regulate more.

You're parenting a child whose nervous system works completely differently, and you're doing it without answers yet. It's all learning.

I've got a free guide on meltdowns and after-school overwhelm that explains what's happening and what actually helps which can be applied across different areas, if you want:
https://beyond-the-behaviour.myshopify.com/products/pdf-the-after-school-crash

Here's a full booklet on the entire autistic experience too for after if it's helpful!

https://beyond-the-behaviour.myshopify.com/products/autism-beyond-the-behaviour-booklet