Handhold needed. Can't cope with 3.5 year old autistic son..

[OneWarmHazelQuail]

We're in the process of getting a formal diagnosis for my son who is 3.5 years old but I'm not sure how it will help.

He gets upset and angry a lot and it's very distressing. When he was younger, we thought it was just the terrible-twos but he didn't grow out of it. Will he be like this forever? Feel very depressed. It's so hard. I have a 8 month old baby too who isnt meeting her milestones. I feel lost. Please God, someone tell me it'll get easier!!!

It can get easier, it’s a rough time at 3.5, you’ve got a way to go yet, but hopefully things will get easier. Mine is amazing now, 3.5 was very rough. But every kids different. I guess I don’t want to give you false hope but equally you may find things improve vastly. But I’m afraid there’s still a few years of it being hard work. Just try and remember they may be trying to negotiate a world that is a lot for them to process plus emotional developmental age can lag behind actual age so always worth remembering their immediate response may actually be that of a younger child, when caught in a meltdown they may not have the ability regulate themselves. Make sure they’re safe, let them calm down, (yes this can take a long time) hug and reassure, you just have to ride the storms at worst and try and avoid the triggers at best. Good luck.

Age 3 is a hard age for lots of kids, it doesn’t really get easier until they’re around age 5 or later for some. I don’t know why they call it the terrible 2s, my dd tantrummed from age 1 and still has them at age 5 (she is also suspected ASD though),

You're deep in the trenches at the moment. I read on MN recently that when you've met ( or even know very well) one child on the spectrum, you know one child. All are different. Also in my, albeit limited knowledge, boys seem to present in different ways to girls.
I have 3 adult DC. 2DSs have ADHD and DD has autism. DC1 is 30, has a great career, owns his own home, is married to his childhood sweetheart and has a baby.
DS followed in his DB's footsteps, they work together in engineering and despite an age gap of almost ten years get on brilliantly. DD is current doing a Masters in mathematical physics.
Life hasn't always been easy but being ND doesn't mean there isn't a great future out there for your DC. I am grateful every day, but admit there were times it was a struggle.

Thank you for this message - I actually read this out to my husband before bed as I found it so comforting!

Am glad you said 5. 5 doesn't seem too far away! Really hope he does get easier with time

I hope I'm in your shoes one day! I'd love for my son to be able to lead a happy, independent life as an adult!

I found around that age really hard. DC2 woukd have these huge meltdowns, seemingly over the smallest thing and the only way I could get them to calm down was to hug them firmly. I knew they were different than other DC I had known but then I didn’t know they were ND.

They are in their late teens now. They work, go to College, have a lovely BF and a small group of friends and seem generally happy. They do need a bit of alone time to regulate but as they are living with us that can easily be accommodated, we make home bery low demand for them and I probably do far for them than i would a NT teen, but only things like laundry and making sure their room is habitable. Nothing too onerous.

If your DS has been referred for assessment, has he also been referred for Portage and SaLT? If not, I would ask your HV for those referrals

Have you had his hearing checked op? My DS went through a horrible phase of huge meltdowns but also hitting me 50 times a day. Turned out his ears were completely blocked by thick wax and getting them suctioned helped massively. Having their hearing blocked can make them feel very fustrated.

One thing I would say OP is do your own research from now and try to start to implement strategies. The diagnosis usually does not really change much, I remember feeling like its going to open the door to lots of support etc but unfortunately it often doesnt.
If you're not already, get on some parent support groups online and also see if you can find any local support groups as I found these brilliant for information.

It does get easier in many ways but also it doesnt.

The SN section on MN is usually supportive and knowledgeable too

Our community nursery nurse team was a huge support at this age. I think we may have gotten lucky with our case handler but she was so useful at helping us think of and implement strategies. We went very low demand, and focused mostly on avoiding triggers. Timers, telling DC in advance what was going to happen (especially if it was different to normal) using ear defenders anywhere noisy even if it wasn't 'that' noisy, used our pushchair long beyond the typical physical need (could walk for an exceptionally long time but had a tendency to just refuse if it went against wishes/wants). Name feelings, even if they can't be felt or understood yet. My DC takes things very literal so we had to be more clear in how we spoke, also only provide clear 1 step only instructions. We can now do 2 step instructions.
My DC was speech delayed and masked at nursery and now school.
However there are almost zero demands at home, our other DC at this age were doing more independent things but as a PP mentioned above often children with neurological differences can be emotionally younger and you need to pick your battles. Routine is key, and I don't just mean do the same pattern of activities every day. I mean if you set the table every day set it every day, if you make the beds everyday make them everyday, if you get home and take your shoes off put them in the same place everyday. Small little adjustments that meant a lot to our DC, had very little or no difference to our other DC and us so we just adjusted them. You will have to change activities or do a different day at times and these are big transitions you will need to support your DC to regulate with, if they're already bubbling up over small things like their shoes not being in a familiar place or they must put their coat on the third peg but it's gone on the second one, the small stuff builds up and they can't manage the expectations of bigger stuff. We took all the small stuff away, and the bigger transitions are much smoother.
I do expect this to get trickier as we progress as some of those small expectations do need to come in eventually but we're going small and steady at adding one at a time.
The age old example that comes up here is a coloured cup, most toddlers will protest they want a blue cup not green and it's usual for them to get upset by accepting another colour. Eventually they'll calm down and drink from the green cup. In circumstances where our DC can't cope with that kind of demand to just accept the difference allowing them the colour they want, the fall out is they don't drink anything at all.
Your not rewarding bad behaviour by giving the cup of choice, it's what he needs to feel safe to drink.
It's okay to be finding things tricky too.

@OneWarmHazelQuail Oh I’m glad it made you feel better, it’s an intensely lonely place sometimes as your friends with NT kids don’t really get it, even if they’re sympathetic. I will say one tactic for when he’s older, I got to a point with my DS where I would tell him that if he had a meltdown I would leave him to be upset and that I would be in the next room if he needed me or wanted a cuddle, this was discussed when everything was calm and reiterated before I actually left him to it, never done as a form of punishment/chastisement for the meltdown. It was not that I didn’t care but I knew my presence didn’t help. This worked for us as physical pressure and talking didn’t work as calming aids. Plus being at a one room remove when they are having a meltdown helps you to stay regulated so you can give them what they need when they come out the other side. As I say maybe not for every kid and sometimes just sitting silently with them can help too, talking or trying to verbally calm them was almost always the worst solution.

This is all brilliant advice and exactly the approach I took with my son (DX at 3.5,SEN Sch until 16). Yes all kids are hard work at 3.5 but it’s in a very different way when they’re Autistic. Hang in there!

You've had lots of great advice already OP. I'd just add to give yourself grace - it is absolutely ok to feel frustrated and overwhelmed yourself with your child’s behaviour. Equally, remember that they are not BEING difficult, they are HAVING a difficult time. It helps to reframe situations (for me at least)! My youngest is 6 and still non speaking but there is ALWAYS a reason for dysregulated behaviour. I would say I can identify the cause at least 90%of the time now which helps. We've recently started using an AAC app to help communication which is fantastic. If youre in a position to do so then I'd wholeheartedly recommend looking into this asap. For us at least a LOT of the frustration has been around his difficulty in communicating so this has been really helpful.

Thank you, good shout!

I'm moving house in 2 weeks and annoyingly, I will have to get new referrals for SaLT, OT etc and start process all over again as I'll be in a new Borough. It's incredibly frustrating!

Yes, hearing checked! He had chronic tonsillitis and obstructive sleep apnea- we had really hoped that we'd see an improvement after his adenotonsillectomy but unfortunately whilst he does sleep a lot better, he is still prone to meltdowns and low mood

Our big problem is getting our son to go to the toilet- we have tried reward charts, torches, endless treats, celebrations, potty/toilet/urinal options, everything we can think of. He just hates going to the toilet to do a wee. He'd rather just wet himself and stay in soggy clothes. He knows when he needs to go as he starts wriggling.

Any suggestions would be most appreciated? Might also try putting up a post in SEN section on this!

I’ve also been there OP. I’m guessing if your DS is being diagnosed at age 3 then (like my DS) we’re talking classical autism rather than what they used to call Asperger’s? I know how rough this age is, and how exhausting for everyone. There is hope though - DS is now 8 and thriving in specialist school, he has hobbies and friends, and we can do things like go out to eat or to a theme park without any meltdowns. Brace yourself for further ND diagnoses too - we’re collecting them (ASHD, PDA, dyspraxia, sensory processing disorder, dyslexia…) 🙄 It’s a long haul. Get yourself over the the SEN section on here too - they’re a lovely, helpful bunch xx

@OneWarmHazelQuail the toileting is pretty common with autistic children. It took until age 6 before DS would sleep without a pull-up. Does he have any special interests yet OP? The only way we cracked the loo was making treats related to his special interest contingent on using the loo properly. Like many ASC kiddos, he couldn’t give a toss about reward charts or consequences!

Yes this is a good point. The motivation has to be tailored to the child. My son took a long time to sort all this out although he was using the toilet with some supervision during the day by the time he was 5 but night time took a lot longer, although I put this down to genetics as I and my father were the same.
It often runs in families. No matter what my mum tried nothing worked for the night (I was dragged around doctors and given pills ).
it just had to wait until my bladder and the nerves matured enough to wake me up from sleep.
My son was exactly the same but because of my own experience I was very laid back about it and just used a system of a number of smaller sheets layered with waterproof sheeting in between, so instead of of a complete bed change you could just pull of the wet layer and deal with it in the morning.
As my son got older he learnt to take the layer off himself (granted the carpet suffered a bit but we used liberal amounts of disinfecting spray!).

He eventually got completely dry at night by 12, which was the same for me.
id say with eating and toileting if you can, just go with the flow as much as possible as otherwise you will drive yourself mad.
My son was incredibly fussy, sensory, all the things, you name it. Only ate five things till the age of 5 but he grew and was active as one of the things he consumed was milk. By the time he reached 11 it all resolved itself as he was permanently hungry due the puberty growth spurts.
Again my mum was incredibly stressy about all this when I was a kid and it made zero difference other than causing her and me unnecessary stress.
I learnt to widen my diet in my late teens /early 20’s, largely as a result of travelling and having to eat what was there or go hungry.

That wouldn’t have worked for me as a small kid though as I would just have gone hungry - didn’t recognise hunger, son was the same. I believe it’s an autism thing.

your mantra for autism parenting needs to be ‘this too shall pass’ Good luck!

Yes, DS was the same with milk. (Thank goodness, because at one point he only ate crisps!) Still loves it and has always been above the 95th centile despite his terrible diet. He’s a bit better with food now.

Most of the children at his school (specializing in ASC) are the same. Lovely, fresh cooked healthy lunches every day and they all eat one beige sausage roll each… 🙄

@OneWarmHazelQuail
We had similar issues, the toilet was just this scary big step of discomfort basically. Total honesty nursery had to work with us on toilet training and we didn't do it til past 3. When is your DC due to start school?
The advice we were given was to start changing nappies in the bathroom to begin with to get them familiar with the relation.
Next step is to guide them to the bathroom when you see them wriggling/attempting some toilet action if possible (in a nappy still) or in pants even if you expect it to end in an accident.
Talk to him all the while in a calm non emotional way
'I can see you need the toilet, let's go to the bathroom' 'You look unsure, that's okay I'm coming too'
'You look wet, let's go to the bathroom and get dry'
Change soiled clothes in the bathroom too. Keep spare clothes in there so they are to hand.
Then sit them on the toilet in general, not just for actual toilet stuff to begin with. (You can actually buy folding toilet seats that make the seat smaller and is portable for when you go out* also once toilet trained it helps make other toilets more familiar)
We used the proper steps toilet seat as it gave more security around DC than dangling legs over the toilet.
There's also a cartoon YouTube video about pooing on the toilet, it was recommended to me but to be honest my DC paid zero attention however yours may.
In all honesty all that worked for us was patience, we focused on just mastering wees first and poos was a whole different battle!
Don't follow advice like leave him wet or use pants or nappies too small. He isn't refusing because it's easier he's refusing because it makes him feel uncomfortable inside.

@OneWarmHazelQuail I forgot to say it didn't work straight away! It took time and repetition, with nursery supporting to make progress.

smiling as was same at sons specialist school. Lots of beige food and dairy and the kids on gfcf diets had to be in a separate room to be supervised with their packed lunches as their level of being able to spot and remove forbidden foods was uncanny.
i remember when the gfcf diet was first being suggested and i really thought it would be helpful but at that time there was no way I could spare the spoons to make the changes as gf replacement foods were still largely prescription based or you had to make your own. I didn’t fancy my ability to make a suitable gf rich tea biscuit that I could also fit in to the right packaging (because own brands didn’t work. He knew! It was really arrrgh sort of stuff).
consequently I was vaguely troubled in a background sort of way but balanced that with being reassured by his 97th centile generally happy flappy bounciness :-)
now he’s an adult I think gfcf would likely benefit him but that’s his call to make.

thank goodness there’s so much choice now in Free From foods.

It is good that you recognise this now as you have time to get things in place for when he starts school. Start gathering evidence from nursery and documenting medical appointments. If you think he will need a special school then apply for an ehcp as soon as possible. If mainstream, you will have the evidence to engage with the school and senco before he starts. Those of us who started the process later have kids that have missed large amount to of school due to lack of support.

At home, drop whatever demands you can and accept that you don't need to follow the standard parenting way. Do what makes your family life better. Neurowild on instagram or facebook has brilliant resources for children.