My 4 year old autistic son is making me suicidal

[WhatAMum01]

Hi everyone, don't know where to start, having such a tough time and it's really taken its toll.my son is 4 years old and diagnosed with Autism at 2.He's non verbal, screams/moans all day and will not sit still for a second. Im a person who doesnt like attention and he screams or moans loudly non stop everywhere we go.nothing stops him,no one can recommend anything
Its driving me crazy.It's so very exhausting and sochallenging.Myson won't concentrate on anything,he's on a waiting list for adhd assessment but would not get any medication until 6 if diagnosed.I can't take him anywhere anymore it's too hard,he's a runnertoo.feelslike really there's nothing we can do except struggle on.Speech therapy and ot haven't worked and the hv said he's just not ready to learn any other communication methods such as pecs as he's unabe tofocus.He pinches and tugs at skin and hair.He is severely autistic, the autistic no one really can do anythingfor.itsbroken me.I have two normal children who are stuck in this nightmare with me.what can I do?how can I calm him down?how can I live like this?

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Sorry that you are having such a tough time of it.
Are you able to access respite care? Not sure how it works exactly. Or any family who can babysit occasionally for the rest of you to get a break.
Is he at a specialist school?
If you have enough money I would look into ABA therapy as you sound like you really need some help in getting him to cooperate.

Hi thanks for responding
No we can't afford ABA,dream of winning the lottery everyday so we could afford this plus help.husband is only one working providing for us all
The in laws help with my normal children but seem ashamed of my autistic son and to be honest just think he's hard work and kind of pretend he doesnt exist. My own mum is too elderly .I have no one to help.Even friends avoid coming round as much as he pinches their kids. Based in Scotland not much respite offered.he starts special school in August.tbh cannot wait but also live in fear they won't be able to deal with him,he won't sit.

Oh god that sounds so challenging. You must be going out of your mind with it all.

The lack of communication and sensory issues are probably what is causing the moaning/anger/anxiety/frustration. Have you been able to get any idea of his sensory profile? I wonder is he in pain from sensory issues. Was the OT any use on this? I disagree on PECs. I wonder if you were even able to get even a small bit of communication going would that help alleviate some of what is going on.

Definitely push for respite. You sound like you need time to regroup before you can take on much more. Have you a DH/DP? Would you be able to get someone regularly in for respite. That definitely exists where I am but I’m sure like everything else it is patchy.

I really hope things turn a corner. I found the book “The reason I jump” from a non verbal 13 year old autistic Japanese child one of the best insights into what it is like being autistic and it gave a really good advice on how things might be changed.

There is loads of help in PECs online if your SLT refuses help with it.

A good special school will work wonders with him.

It is bloody hard work, though, in the meantime, particularly when you feel stretched all ways.

Hey op,

I want to give you a hug. You clearly need some respite. You can self refer to your local children's with disabilities social work team. Tell them exactly how it is, how it's effecting you and your other children. I made the decision to refer last year. Best thing i ever did. Respite has made life so much easier for me and my ds. My ds is also non verbal, it's really tough. The same noises over and over really does drive you nuts! My coping mechanism when it gets to much is to put headphones in, breaks the cycle.

A health visitor is not qualified to give any opinion on communication. My son took many years to grasp pecs, he is now a high tech aac user, you have to keep going with it. Even if he doesn't seem to be paying attention, keep going he will be taking some of it in.

No matter how bad it seems he can be helped, but firstly you need some help so you can continue to help him before you become really unwell yourself.

If you need to talk now please call the samaritans. They will listen, I've rang them myself more than once.

Im in Scotland and don't think it's on offer here?he's not in pain,he laughs incessantly .he just can't sit still or stop moaning /shouting/screeching.I can't hear myself think ,it's been 2 solid years like this
Hes got melatonin for sleep but even that is sporadic in its working.he wakes at 12 most nights and runs around until 7 am.I have to be awake,he clims on windows and cupboards and pulls down tvs.

He's completely wrecked so much of my house and clothes by biting throwing or chewing on everything. He's 4!I can't comprehend what he's going to be like when he's older. We have been in bed since 730 trying to get him to sleep only now is he calming. My arms are sore trying to get him back in bed by carrying him at least 25 times back from bedroom door. He weighs 3.5 stone and I'm just slight build.

It's possible that his vocalising is stimulatory behaviour. Does he have things he can stim with? If you have a toy library nearby it might be worth seeing if they have some kind of sensory box to see if anything in there would help him replicate the feeling he gets when he's making noise?

As an autistic person it's just one thing that occurred to me to try. Not saying it'll solve it, but I do empathise as one of my kids used to scream solidly until we found a solution to getting that same feeling.

Does he have an Ipad? You can get covers that makes them almost unbreakable. You can apply to the Family Fund for an ipad and apps to support communication. The first application takes a while but was a process that understood how hard life can be, IME.

Are you receiving DLA for him and carers' for you?

What would make a difference for you? What would you like your other two to be able to do?

What can we do to help?

The biting is definitely sensory seeking. I think you need to try and get to see an occupational therapist for a sensory processing assessment.

Under the childrens act you can self refer for a section 23 assessment. This applies to scotland. Contact your local council they will be able to help you.

Oh and if it helps my son at 4 is very different to the boy I have today at 14. Still challenges, different challenges but things change.

Who is involved with your son at present? Health visitor, tell them you can't cope, u need help.Are you getting any benefits?
There are def places that provide respite. Where in Scotland are you?

The biting is definitely sensory seeking. I think you need to try and get to see an occupational therapist for a sensory processing assessment

Yes it definitely sounds like your OT is frankly shit, I wonder can you access another one. Typically the way the sensory diet works is finding your child’s required sensory input and replacing the unsuitable sensory input with sensory input that still meets your child’s needs but without driving you doo lally. Ditto for communication input, 5 might not work for your DC but there will be ones that work even if they have to be modified.

To be honest though without a break it will be impossible for you to pursue any of these suggestions as it is too full on. No sleep, constant vigilance, you must be totally exhausted. Literally anything respite wise, social services, GP, whatever you can. Shout now and shout loudly. Literally no human could cope in your situation as well as you have done, I’d have cracked way before now so you are obviously a really tough cookie but you need a break.

I'm scared about involving social work as I may then be seen as unable to cope (which in reality I am )and he may get taken off me which would be awful as who would really care for him with his many challenges? I've tried him with so many toys to try and get him away from the vocal stuff but he continues even when stiming.he's not got an interest in ipads,how I wish he was one of those obsessed autism children ,he's got an interest in nothing but running non stop and stopping to break stuff ,throw it on the floor continously. He doesn't understand no.is there anyone out there with a child like mine?

Should say he's got No interest in ipads!

I remember my DC not understanding no - it is incredibly hard.

You might need the ipad for easy photos to show him where you are going/what is happening next.

Do you have any open spaces where he can run safely? The beach? A big open park? Is there a soft play near you that has dedicated time for kids with additional needs? He has a need to throw and a need to run - can they be met? What is he like in water?

To be totally blunt Social Services won't want him - he is too complex and he has a caring parent. But I agree with you and keep them at a distance - friends' experiences of them have been largely negative. What about your local Carers' organisation for advice and if there is any local service you can obtain?

Trampolines helped
Swimming helped
I’m gonna smacked at someone telling you he’s just not ready to communicate . He may not be ready to talk yet but of course he can work towards communication.

Can he copy?

The disability team are totally seperate from child protection. Having dealt with them now for 18 months they have done nothing but help me and my ds. That's my experience and shared by lots of people we know. We get 5 hours respite a week plus a number of overnight respite nights a year.

You've described my son at that age. Totally non verbal, he'd pull lumps of my hair out, smashed my new tv, broke every set of blinds we ever had, put a hole in my door and destroyed the wall paper in my bathroom. Made noises constantly, would scream all the time, have awful meltdowns, smear his own faeces all over his room. It was an awful time. The key is communication and dealing with sensory needs. Easier said than done i know!

Don't give up on communication, there are so many things you can try. Pecs, podd, makaton, high tech acc such as proloquo2go, lamp words for life plus loads more.

Sensory play can be really helpful things like Orbeez, sand, water play, paint, shaving foam, gloop, coloured rice/noodles, fidget toys, swing, slide etc. You can get all types of chews, my ds loves to chew and will chew anything. He has a number of chews he can use and is directed to them so my furniture is now safe haha. A weighted blanket is really calming for him. A wobble cushion helps him to sit down for longer periods. You can also get weighted lap cushions, I've also seen weighted snakes that can be placed on your lap or over your shoulders.

We still have really bad days sometimes but things are much more manageable. I'm not sure if things have gotten better as he's got older or I've got better at managing his needs. Probably a mixture.

It's laughable that they say he's not ready to communicate - behaviour is communication. The key is enabling him to do that in a different way to that which he does now. I'm afraid I can't offer a quick fix but I can offer you sympathy - I've very much been there. But there is the potential for things to be so different. I'll also support the previous poster who says the child disability social workers are very different from child protection, please don't fear them.

How are you doing today Whatamum? you are on my mind

Hi everyone thank you so much for your responses and taking time out of your precious day to help this stranger.I'm going to try some of the suggestions about trampolines orbeez etc and also phone my hv on Monday for some advice, this is me sitting down now after been on my feet watching him since 5am this morning on top of running a house and everything it entails.what a life.can't quite believe it's mine.

Whatamum01 - do you claim DLA for him?

Thinking that might help cover costs of things like OT therapy, ABA, carers etc.... We claim for our son and use the money to pay for private speech therapy because the local NHS offer is woefully inadequate for his needs.

Really sending you huge hugs. It sounds tough. xxx

Hey WhatAMum just wanted to wave and say I hear ya. My DS is almost 8 and the same, I've a younger DS and had to turn down seeing friends today as knew Ds1 couldn't access the location so we all missed out.

Up at 0530 with grunting and kicking and the odd bite thrown in, 14 hours later I had my fingers in my ears almost begging him to stop.

All of that said, now he's older these 'manic' phases are not as long lasting as when he was younger and we have slowly found out what helps divert he sensory seeking behaviour away from us and on to inanimate objects.

I echo others, search for an OT that has the time to get to know your child, try everything however odd it feels and seek exterior help. We too have little family support and now have some direct payments which means we can get some help with the odd bedtime or mealtime. Also start looking at weekend play schemes, there are some fab schemes with great staff who you can safely leave DC with whilst you do something with other DC or, as in our case, just take a break from the noise.

Do DM if you want to, it's tough xx