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?

✕

My son was in a similar siguation or may be even worse...we has the police coming twice to our place as he run oht the house into the street...plus he had pika...he woukd bite anything leak absolutely evetything like a dog...
But after ABA theraoy...he is almost recoveting...he is still.non.verbal with some brhavioural issues...but very calm and happier...and gocuses better snd learnibg everyday....

Try ABA...it us yoo dxpensive but wirth it...

My advice is you do it for your son...you will ve his ABA tutor...mothers are the bedt therapists...

My son was similar and also massively improved with ABA. He’s calmer and happier as he has been taught skills that help him communicate and he knows that aggression and throwing things won’t get him what he wants. ABA is a big commitment and hard when you are already exhausted. It’s not ok to discharge you from services as he’s not ready what that means is you need more specialist higher level services. I’m not surprised salt don’t know how to teach him but an ABA professional will. We used DLA and just paid for a supervisor to teach us and we became the therapists. We then showed enough success to get it funded via tribunal. Cost is less of an issue if your child is at the severe end as they will cost a lot anyway in special school and social care. ABA is successful at keeping many children like ours out of residential care. I know children like ours who have been put into residential school at age 8. There is a huge amount that can help but it has to be autism specialists - general nhs staff are clueless when it comes to autism and behaviour. My son is not in the least traumatised by ABA. I have overseen his ABA from day one and he is a much much happier boy now than he was before when he was harming himself and others and had no quality of life at all. My son is now 12. He is obviously severely autistic but he can communicate his needs and wants. He can sit through a meal in a restaurant. He can go on an airplane. He can walk safely on pavements. He can do his own shopping and make his own snacks. And he is very very content most of the time. Pre school is the hardest age and it’s awful it takes so long for help to arrive and we are left to manage this hardest stage on our own. We’ve tried many things and the only way he has learned anything was through ABA.

Great Dropthedeaddonkey!

I am pleased to see brave mum.like yourself here...

I am currently the tutor for my son...ABA is very hard and too expensi e ...but worth it

My problem bow is to help my son speech...

He is 4 and is still non verbal and has lead poisoning

Does any one had experience with lead?

ABA is probably not the answer. From listening to actually autistic people, the autistic community sees it as neurotypical people ‘training’ Autistic people to modify their behaviour and stifle their autistic traits.

I have 2 children with autism - my youngest is 4 and sound somewhat similar to your son. Accept him for who he is, and everything will become easier. Acceptance can be very hard as you grieve for the child you had expected, but until you completely accept him you will carry some resentment to his behaviours. If people stare when you’re out, let them! Tell them he has autism. I do this all the time, and it stops the looks and mutterings towards you. Find something he loves - bubbles, throwing a ball, a programme he can repetitively watch, and embrace it. He will find comfort in repetition, routine. I fully understand how hard things are, but you have to give him the best start you can. You can do it.

Thanks Buscake for your advice....but we cannot let him.do absolutely what he wants...he is a human and needs to learn discipline..boundaries...in a few years he will be a teenager...taller ...stronger ..and he could slap you?! No?!

I have heard lots of stories...my neighbour took her son at 12 years old to a card home bacause he aas vilent towards his mum

We needs to disciplibe him...help him...meet his srnsory needs and remember not all he does is due to autism...

You cant seperate him from the autism though. Its his whole operating system.
I do feel for you. It feels so thankless when you don't feel like you're getting anything back, and it sounds like his needs are significant and you are clearly not being adequately supported yourself.

Im autistic and i am not entirely against all forms of ABA. It depends how its done. I do not agree with punishing people for autistic traits though. I think as long as its done with positive reinforcement rather than negative reinforcement then I can see it might help, but I believe that some ways it is done are clearly cruel, but those cases ive heard of have been american. I dont know about here.
I think if he goes to an autism specialist school, it will be brilliant for him and for you, because it will give you community too of people who understand.
I still miss the SEN school my eldest went to

Branleuse

Thanks for you message.

I only use positive reinfircement and I never punish my kids...even my NT kids.

It is great to hear from an autistic adult.

Can i ask you please:

Do the sensory needs improve with the child age?
Or we have to meet them before they grow...as it will be too late jn their teens???

For example, hyper.activity...the urge need of throwing things up...touching things around..etc

Is it true that sensory needs are the most important to be met, so that the child could regulate himself and be calmer and hence be able to speak?

My 4.5 old son is still non.verbal and has lead poisoning in his blead

I definitely didn’t say let him do what he wants. I just think that you are viewing his behaviour through the lens of ‘typical child’ rather than accepting his differences and adjusting your expectations accordingly. From experience I know this isn’t easy, but I do believe it is necessary. You can impose boundaries (he will feel comfort knowing these boundaries!) but you may have to reframe the way in which you do this. Visual supports etc can make a huge difference - even if your son doesn’t understand the supports yet, he will in time.

Autistic children grow and mature like anyone. There will be some things that get easier and also different challenges will arise. Mine hardly ever have meltdowns anymore but maybe i preempt and avoid certain situations now and do a lot of prepping and strategies now which ive learned along the way. Mine all have language though which makes things easier somewhat, but even though yours is preverbal now, that doesnt mean he wont ever communicate.
My eldest was a really difficult young child, but as a teenager, hes lovely and done things i would never have expected.
I do a lot of "creative" parenting and I dont Have the same standards as a lot of parents.

I would really look into some of the autism communication and pecs apps on the ipad and tablets. Even if hes not quite ready yet, i bet these will be useful at some point.

I dont know if this is helpful at this stage, but i read a lovely post recently about playing with autistic children
m.facebook.com/story.php?story_fbid=1389683261187600&id=741970902625509

Thanks Beanleuse for your advice and help.

I just spoke to my ABA therapist and We need to start very soon on PECS proloquo...or any communication strategy..

Could you please share some examples of
"creative" parenting...

I mught get inspired from you, Great mum.

Thanks again.

@Alwaysgrey thank you so much for caring to share about your daughter.when I reached out with this post initially ,I thought that there actually was no autistic child like my son and it killed me that this was how hard it was and there seems like no letting up from it relentless struggle. Since being on here a few parents have come on facing the same difficulties and it's been so therapeutic to hear their stories and share tips to see what's worked and what's not.I'm currently awake with my son who took two hours to get to sleep and who is now again awake running around the room,this is nightly and melatonin has been prescribed but I'm unsure of how effective it is.My days are like yours ,full of loneliness and exhaustion sometimes better when he has a good calm day.I feel so bad for you that your last child was a stab at normal patenting and it's not worked out as such, I feel so guilty for my two normal children as they feel burdened by the stress of it all,doesn't matter how much I try to shield them from it.

@dropthedeaddonkey thank you for sharing. You hear so many conflicting stories on ABA that it's so hard to decide if its right thing and worth all the effort, stories like yours definitely makes you think yes.I'm just worried that I wouldn't have the time to do it,how did you manage?is it a case of learing techniques and just using them to communicate with my son on a daily basis in that fashion? It's so so expensive that it's prohibited just now for us, money is tight.we are currently getting his DLA reviewed so if it increases we will look into it and see if feasible. It's wonderful to hear your son has changed and calmed ,do you think this also is partly to do with growing up too?

ABA is probably not the answer. From listening to actually autistic people, the autistic community sees it as neurotypical people ‘training’ Autistic people to modify their behaviour and stifle their autistic traits.

Aba is not behaviour modification to stifle autistic traits.

I have a child with severe Asd and learning difficulties and ABA is teaching my DC vital basic skills or should I leave DC non-verbal, self-harming, poo-smearing as it's part of their ASD and we really don't have the right to change these autistic traits?

It always give me a rage when I read these comments. If you are high functioning, you age absolutely nothing in common with someone with low functioning ASD. How the HF crowd claim to speak for those at the severe low functioning end of the spectrum?

Must have been something in the air last night.
My DS fell asleep at 11pm but has been awake since 2.15am. He’s giggled, chattered away to himself ( all delayed echolalia) and sang all night in bed, then got up at 7 for a wee and come in to see me all smiles.
DH slept downstairs as he’s got work today and I’m just thankful DS is in a good mood, well so far anyway. It’s going to be a long day

Just to dispelll a myth, my HFA child also smears poo and regularly self harms. I, myself, am surprised by the similarities but a friend with a nonverbal, severely autistic child would describe her child and we were going through the same phase of our dc ripping books up / there favourite books - and I had replaced the book but wasn’t going to any more and she was contemplating the same thing.

I do prefer the prism description of ASD, I hate the HFA/low functioning distinction. Im also up at all hours trying to get her to sleep, and at 11yo, I am so throughly sick of it.

I’m not for once suggesting that it’s the same, and I don’t want it to be a bunfight, but there are similarities in many areas in terms of traits that we may be able to learn off each other. That she is able to talk and has No significant LDs is a significant strength for us all, but I also can’t see how she will be able to live independently or have a job in the future despite these strengths.

@Bananasplitter I have quite a lot in common with my poo smearing son, thanks. We can both go non verbal under stress.

Labels are for jam and functioning ones are damaging to the autistic community. You absolutely minimise the challenges I face an autistic person in a neurotypical world by your assertions.

I hate ABA. I wouldn't do it in a million years to my kids. Even before my own diagnosis I instinctively recoiled from it and used other strategies such as TEAACH with my kids, very successfully.

However I would never condemn a parent who felt ABA is the only way for their child. In fact a friend of mine uses ABA and it works for their family.

I will still say though there is always the chance for maturity and change in all our children. That may not fit the pattern of a typical child but I still vehemently believe that behaviour is communication and unpicking that and facilitating communication - whatever communication means to that child even leading and pointing is communication - will inevitably change behaviour.

Imip I may be trying to get grandma to suck eggs but have you tried melatonin? I'm sure you have but just checking.

This is me right now please tell me it gets easier. I’m so stuck im becoming depressed my body aches my head is pounding I don’t want to wake up every morning

Hi, I know this has been a few years since you wrote this post but my son is 4 and I’d just like to know how things are now if possible or if anything helped, I’m literally you now but getting bitten and having my son smash his head into the floor constantly throughout the day and night

@WhatAMum01

Hi there , know this is old thread .

Just wanted to see how things are ? X

It really is a challenge. There is so much focus on the child, forgetting about the risk to the parents and a complete collapse of the home environment. In the 3 years since signs started to show only 1 person has asked if I was OK. I was not and still not OK, but your ability to cope goes up and down. I'm thankful I get to goto work, I can somewhat block things out.

Right now my son is extremely vocal, so much that when driving I had to pull over for safety as my ears cannot take it. Extremely sensory seeking, will climb/fight and has bitten in the past. Actually last bite was in early September but it was only on my finger and don't draw blood. Settings sent us to social services for help in June to get support over the summer, but we are still in the backlog despite chasing, so no help available. No family, no respite.

It doesn't help with the unknowns either, limited provision at the moment (2 hours, 5 days a week) at most. Cannot attend mainstream school, EHCP was due in May, we went to PAP letter route to make progress but still not final plan yet.

Music may help. Perhaps something he likes to do which keeps him focused. Or maybe reading a colourful book. Drawing, you have many options.

Hey ☺️
My 6 year old sounds very much like your little boy. The running around is a form of regulation so is the laughing and some of the other behaviours you are describing.
He sounds very sensory seeking and he needs an outlet to help him to self regulate.
We have put a trampoline in our house and he will jump for hours he does also pace for hours running back and forth.
We have got him the big exercise balls and he uses them too.
He needs something to stimulate him and for quiet times too bubble tubes disco balls a tent and weighted blankets help.
For the biting get some chew buddy's he can wear round his neck and chew till his hearts content and that will help with the sensory input he is craving.
Also a box or tray with things he can run his hands through my bot uses a tuff tray full of dried pasta rice lentils etc keeps him regulated for hours.
If you ever need any help please message me I know it's really hard but if you can find something that will help regulate him I promise it will get better xx

Yes there is op mine son sounds exactly like yours!
And believe me I know how hard it is!

My son is nearly 6,he is non verbal and vocal stims constantly.
He also has self injurious meltdown multiple times a day and lashes out,bites rips hair out,kicks ect..

He also has no interest in TV,toys and no idea how to use ipad/phone just constantly run,jumping climbing pacing all day .

I hardly see anyone anymore friends and family never come round and hardly ever call, it gets very lonely.

My son started a special needs school in September,however he is still not in full time as they struggle to cope with him he won't keep still,follow instructions and extreme meltdowns.

He has started medication (and we have tried a few) but unfortunately none of them has made much difference.
We have done private aba too and was a waste of money to be honest,he didn't learn anything from it and so expensive(most of it is common sense anyway I thought there would be more to it) but we kept going for 7 months in the hope it would help.

Please feel free to message me there are many things I have learnt in this journey and if I can be of help in anyway as I.know how difficult it can be.