At my wits end with 5YO DS, suspected ASD

[AnxiousandExcited]

My almost 6yo son is currently going through the extremely slow process of NHS assessment. The pediatrician suspects that he is on the autism spectrum, though she did warn me that we will most likely not get an exact 'label'.
He is very clever, but socially very irritating and somewhat 'strange'. He can't read body language and doesn't really get that other people are people, though he does show some empathy in his own way. He is a sensory seeker - constantly moving, chewing, banging, turning on and off lights, blaring music, fiddling, running, etc. He also moves the furniture constantly - so if I leave him in the playroom or bedroom alone, the only time he is 'settled' and doesn't need me is when he is moving the couches/beds/cupboards/tables - and these are items that are heavy for an adult to move, he moves everything almost every day. I am considered by my friends and family to be a firm and strict mother, it's not a discipline issue, more just driving me nutty! He doesn't seem able to control it.
Another issue that I have been firm about with no effect (because he seems to have little control over the impulse) is cutting. Though we have disappeared any scissors, every time he finds a pair, or his teacher gives him a pair in school, he cuts his trouser knees, jumper sleeves, pencil case, water bottle, schoolbag - whatever he has within reach really. Though I work with the school and he doesn't officially get scissors without supervision, he manages to get hold of things.
He loses everything, even stuff that is tied to his clothes! He has trouble with wiping after using the toilet, won't brush his teeth, won't bath without incentives (bath bombs, exciting shampoo, bath toys) and lies about washing his hands (claims he has when I know he hasn't) - and doesn't seem aware that I know he hasn't. He also has hypemobility and low muscle tone, so he can't really effectively join his peers in playground games.
As he gets older, more is expected of him and his issues become bigger. He doesn't get DLA because they said he hadn't been assessed properly yet, but I spent a lot of money on therapy equipment - swings, balls, beanbags, weighted blanket, body sock, sensory items etc. - because without that he will literally destroy my house, using the furniture and walls/doors as his therapy equipment!
Because I am very firm, he basically behaves okay most of the time, especially out the house, and especially because he hasn't been visiting others during the past year, so everyone besides close family, friends and teachers keep telling me that he is 'just a sweet kid'. He is adorable but also impossible!
I have two other boys. Today he took over my younger sons birthday party, unwrapping the gifts, playing with them, handing out the treats. When I stopped him, he went wild, screeching, hitting - not in anger, not a meltdown tantrum, just bored, restless, confused and jealous.
Any support? I don't usually vent like this but I'm at my wits end. Tonight I slapped him just to calm him down and bring him back to earth - give him that sensation!! He's reading in bed now, quite happy but 2 hours after he went to bed. He won't be able to get up tomorrow.

Sorry for the ultra long post - had to get it all out. I'm looking forward to any support...

Oh Jesus, I was with you until the end. Please please don't slap your autistic child for behaving like an autistic child. The first thing you need to do is MASSIVELY lower your expectations of them. Do not try to enforce neurotypical behaviour upon them, it can be very damaging and upsetting.

I can understand feeling frustrated with your child but you hit them for having a meltdown. You need to read up about autistic meltdowns - they cannot help them. You punished your child for a completely natural behaviour (to them, it will look unnatural to you, but it's not to them).

Please please never ever do that to them again,

Thanks @cripez, for replying to my post! It's actually the first time I have slapped him.
I don't know. He isn't diagnosed ASD. This wasn't a meltdown in his typical way, it was hyper and angry? He needed sensation - He is a sensory seeker in a major way, he would not do anything that would be beneficial and calm him down (he can actually express, I don't want to take deep breaths, I don't want to calm down), he wouldn't let me massage him and anyway I couldn't give him all the attention he wanted. The slap was a shock but it did not hurt physically (i know from his reaction) and it calmed him. He was actually happy afterwards.
I'm gonna get roasted for this though I'm sure. I wish I could send him for time-out in a sensory room with flashing lights and pounding music etc, as that's the best for him in such a situation, but I don't have a sensory room.
And he is going to have to cope with life even without the support of those around him. How will he learn to live in a regular world if we don't teach him that he must act like a neurotypical person as best as he can? I want him to be able to have a job, get married, etc. He does need to have some neurotypical skills, you know.
Sitting back ready to be bombarded with comments about how it is never ok to hit. I agree.

I am reading your reply absolutely agog.

Your poor son.

Please name a neurotypical skill, as I am unsure what you mean by that.

Um, to go to a party and not take over? To be criticized without hitting the roof?

Your responses reveal alarming attitudes towards neurodiversity, and you really need to get those attitudes in check if you are going to raise a happy neurodiverse child.

You said 'he must act like a neurotypical person as best he can' - this is incredibly damaging to a neurodiverse child. Incredibly. Please read up on this. You can get a neurodiverse child to ACT like a neurotypical person, but the masking will cause them immense mental pain. It is like shaking a coke bottle. I suspect your bright son is already masking, to please you and as a response to your 'firmness' and his outbursts are a direct response to having to pretend to be neurotypical. The Coke bottle burst, and guess what you did? You slapped him.

If you go to any parenting course for autism, Earlybird or similar, they will teach you how to avoid triggers, how to minimise them, and most importantly, how to ALLOW FOR THE AUTISM.

You mention 'the regular world' - what is that exactly? The world you had imagined for your child before you suspected they were neurodiverse? You don't have that child. That world isn't their world. It only exists in YOUR head. So you help them as best you can to navigate the world around them, but you give them more space and time than a neurotypical child.

You also mention 'neurotypical skills' - no such thing. Autistic people can be very skilled at many of the same things as neurotypical people, you have them held in some sort of binary in your mind and that's not the case. There are only skills.

You are damaging your child, OP. You have a lot of reading to do.

You're not removing triggers from your child or strategising to manage their anxiety and behaviours. You're just ploughing ahead and trying to force them to conform, throwing money and equipment at them instead of thinking 'what would work here' 'how will we manage..'

And that is never going to work. You're making a whole shitload of work for yourself further along the line. In fact you're already reaping it.

Your child doesn't need a sensory room, though obviously that would be lovely. Your child needs you to understand that they can't be that person you think they should be.

Start here: https://www.bbc.co.uk/programmes/articles/38f5MsC2mB5fnmCr5v77zDn/how-it-feels-to-have-an-autistic-meltdown-and-how-you-can-help

https://www.amazon.co.uk/dp/1409176282/ref=cmswwrcppawdbimmm_45YSRSM4R6QHSFRCZCEH

www.spectrumnews.org/features/deep-dive/costs-camouflaging-autism/

Please do not slap your child. He is not able to do those things OP. From what you have said it sounds very likely he has ASD. If he is overstimulated and unable to self calm or control then either remove him to another room with a sensory toy or give him a big, strong hug to help him. Hitting him will not help it will teach him that he can't trust you. He is only 5, even neurotypical 5 year olds can have difficulties with not opening other people's presents, getting over stimulating at parties and self control. When he is calm then you can discuss rules around behaviour if he is able to understand them. Just accept that it will take time for him to learn them and that he may struggle with this.

It is not easy, I have had to leave parties before with DS due to overstimulation or remove him from the room to his bedroom at his siblings parties. He is 7 now and much more able to cope and self calm, but it takes time.

He can get DLA without a diagnosis as it is based on need, get support to fill in the forms from a charity.

Have you considered chew jewelry? It will keep him from chewing on other things. Putting the furniture on casters will make it easier for him to move, and cut damage on your floors. Give him plenty of unstructured outdoor time to run and race. Instead of cutting and fidgeting, give him newspaper to rip. It’s hard for your son to live with neurotypical rules. For him, it’s like being a cat trying to live with dogs. I was diagnosed with Asperger’s as an adult, and list some strategies that can defuse things. Some of them worked for me as a child and adult. It will get easier, and you can effect real improvement in your son’s behavior.

I don't think OP is coming back tbh. I hope they've listened to at least some of this.

I have actually tried almost everything @ericaequites has mentioned. I have some moveable furnture. He has about 5 different chews , wrist chews, necklaces etc. As mentioned, he also uses a body sock, swing, multiple beanbags and a weighted blanket.
Because he has also got low muscle tone he hates doing active things that will actually help him get sensory feedback. The only thing he will do is ride his bike, but in this UK winter it has been mostly impossible. I recently got an indoor ladder/gym thing, but he doesn't like to use it much.
He particularly likes cutting fabric I think, so I gave him some scrap fabric to cut. He used it a bit but he never seemed to have it woth him when he had the urge to cut.
I am very aware of all of the advice that has been posted. He went to OT for two and a half years, we are now slowly going through the NHS system. I know what a meltdown is! But what he was doing at the party was NOT a meltdown. And it was not possible for me to care for him at the expense of the other children, who also have feelings and needs, obviously.
@Choconuttolata, I went through the whole DLA process with the help of a charity. Both they and I were suprised when it was refused. I even took it to appeal - a humiliating experience that I am reluctant to go through again. However, it was repeatedly refused and the 'reason' they gave was that I hadn't gone through the NHS, so it obviously wasn't that bad... Everyone I spoke to was quite shocked, but there isn't much to do.

That is shocking Anxious. When did you last apply and have you tried again since especially if you are now going down the NHS route? I included IEP evidence from school in my latest application which helped or letters from school SENCO can be used or OT letters. I know it is stressful to do especially around the demands of a family.

It is so hard when you have other children as they struggle to understand. Mine got support via a school group for siblings of children with autism which helped them as they do sometimes feel that he gets more attention than them. Sibs are also good:

www.sibs.org.uk/

@choconuttolata Yes, I plan on trying again once I've gone through the NHS system of assessments - at the moment all they say is that his PT assessment was fine besides for hypermobility, and the NHS OT assessment he passed with a 16 (15 - 25 being within normal range), he has quite intensive OT in the past so yes he can thread beads and throw a ball. She did mention in her report that he was sensory seeking. We were told that he shows signs of rigid thinking and may be on the autism Spectrum. We are now waiting for her to write to the school and ask them to request an autism assessment for him.
When I last did the DLA thing, he was not yet in school properly, so I couldn't get anything from the school. I did send in letters from OT's and household help.
He is the oldest, the others are 4 and 1, the 4 year old is just beginning to realize that his older brother is different than him, DS4 also has issues with eczema and aphasia (no diagnosis there - I was just told that is what it is called). My one year old shows signs of becoming a stronger and feistier version of my eldest. Hard to tell at that age, but they are very similar.

This morning he ripped DS4's fitted sheet to bits on impulse - he had broken half the wing off a metal toy aero-plane, then realized that the tip was now sharp, and tried it on the nearest surface, which happened to be DS4's bed. When he managed to rip a hole, he continued tearing/cutting, until he had ripped 4 or 5 long lines into the sheet. He then got bored of that activity, and moved on... When he told me what had happened he was proud of himself because afterwards he had put the torn sheet in the bin. I didn't really know what to say to that. When I asked him to look at me and tell me what he thinks I am feeling, he said 'tired'. I told him I was upset about the sheet, but he didn't understand why, we could just buy a new one... I left it there because he so obviously did not understand. There is zero point in making an issue of this and normal parenting techniques just don't work. Because it is an impulse, having other stuff for him to cut also doesn't work - he doesn't stop long enough to be redirected.
What do I do to stop him destroying my house!? I need to be with him 24/7 (yes, of course he sleepwalks as well!) but I have my baby who likes eating toothpaste and steroid cream (serious - we have steroid cream for DS4's eczema, he needs it twice a day, every time it comes out the drawer DS1 makes a beeline for it. He will climb to get it...) and friends said about the toothpaste that once he tastes it he will spit it out - but he wouldn't - he likes the strong taste. Also on impulse. So I also have to be with the baby 24/7 - though he hasn't yet climbed out his cot at night. I am one person and I can't be doing it all at once.
I am at the end of my tether. What do I do!?

If you can afford you need an OT that specialises in sensory integration.
You won’t give your child neurotypical skills by physically abusing him. What you will end up with is a child who grows up with other maladaptive strategies for coping. My parents took a similar view to yours with my sister. As an adult she is heavily medicated with anti depressants and secretly bites and cuts herself as a coping strategy.

It's fucking hard OP, is the answer. People all over the world are going through the similar. My best friend has two kids on the spectrum and she and her partner have to sleep in shifts.

Ideally we should be supported by social services, occupational therapists, play therapists, speech therapists, paediatricians... but the Tories don't want to pay for any of that.

It is just hard. They do need to be watched 24/7. Do whatever it takes. Lock all scissors away. Put locks on your kitchen cupboards. Install cameras in bedrooms etc.

Make sure your child has a safe space to crash about in and sensory seek.

But you never ever strike your child. Even if they're distressed.

You're expecting too much of your child. I can see that in your responses. You asked them to see what you were feeling - that's a bit of a big ask for an autistic child.

You have to accept that they are the way they are. Destructive, exhausting, maybe a little bit wonderful too.

Thanks all. Too tired to answer everyone properly...

I have a somewhat unique viewpoint on this as I am an autistic adult and I also have an autisic child (much more severely affected than I am)

So I won’t pass judgement. I know it's incredibly hard. But what I will say is that my mother found me difficult and frequently lashed out at me verbally and physically. As a adult I can look back and see she was struggling too. But we have zero relationship and it's taken me until my almost forties to become a well functioning, semi confident adult.

Get some coping strategies in place for both you and your son. You wouldn't get angry if a cat couldn't bark, you know it can’t. You need to see your son and nuerotypical behaviour the same way

Hi OP, sorry to hear things are so tough.

It's good your DS is on the diagnostic pathway, although obviously that takes time.

How disappointing and frustrating re DLA refusal, especially at appeal. It certainly sounds like your DS does need a lot of extra support. And also you mentioned your baby is possibly sensory seeking too - it's a lot to manage.

Re scissors and cutting impulse - sorry I don't have any specific ideas. But as pp said, if you can afford it - private sensory integration OT could help. How did you find the OT you previously used, could you speak to them for ideas or referral to a sensory specialist?

Re 24/7 supervision - I think this is the nub of it, it is relentless and we need huge reserves more patience and perseverance to support our kids, and the state leaves us woefully alone and unsupported in this position.

What do you currently have in your own support arsenal and where could you draw on more for respite? Could you get a trusted SEN nanny to mind DS and DS2 after school every day so you can focus on the baby?

Where could you reduce pressures on yourself even a little bit, you mentioned a household helper, could you increase their hours?

Do you have a partner, how do the two of you operate as a team, do you take it in turns to get up at nights etc?

PS You said upthread that you don't believe slapping your kids is ok, and other posters have affirmed that position - do you think some carefully targeted counselling could help? Ie working with a counsellor who understands the context of supporting autistic kids and the strains on parents? The National Autistic Society has a helpline and they could signpost you to some support.

www.autism.org.uk/what-we-do/help-and-support/helpline

@SabrinaTheMiddleAgedBitch As I wrote, I've only slapped him once, and only to get him out of hysteria when all else failed, not in anger. In general, I am a very gentle mother, I'm prone more to anxiety (as the name says...) than anger.
@StarNights Thanks for your support. The OT we used to go to was very good for him as a toddler, she did sensory integration and taught me a lot. My neighbors say that I have a soft play in my hose, we have a sensory box with sand, beads, etc, disco lights, sound toys, swings, scooter boards, body sock, weights - I think almost everything she had in the OT room! I use them all the time. WIthout that equipment and training I wouldn't manage. But the thing is that as he gets older, he doesn't like to do what adults want him to do... he is a 5YO after all!
Unfortunately, due to COVID, my household help went from 11hours/week to 2hours/week, and school have less ability to give him the sensory time that they planned too. At the moment the SENCO is off sick :( I'd love some counselling, I just haven't found the right person/place/budget!

OP this sounds very hard. You must have reached the end of your tether to end up slapping him.

You aren't the first to slap your child and won't be the last.

I'm a little concerned you don't seem sorry for it though. Maybe you're resenting him? Some counseling and support for you is a must.

It sounds like you don't have a partner?

I can't imagine looking after 3 DC, one with additional needs, by myself.

Can you pay for additional support as an interim measure? You don't say where your 11 hours was from, but of from an older relative they should have had 2nd jab in a matter of weeks.

On another note. If the PT assessment didn't say much about low muscle tone then it's probably not severe?

Annoyingly, the thing that will help the mild low muscle tone is loads of exercise as you know, things like long walks climbing up rocks with a backpack on etc.

My son's low muscle tone improved immensely in lockdown 1 because we were out for hours a day walking in the woods, at the park.

Can you somehow increase demanding exercise using a third party? Send him to forest school one day a week? Use any interests he has to set up a trail or course?

If he likes his bike, can you find out if there's a pump track near you? My sensory seeker loves it.

Good luck.