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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I have no idea why but no one would help me! They just kept fobbing me off saying he’s a lively child. No he’s fucking not. Excuse my language but that deserved the F bomb. The schools kept complaining but wouldn’t set up the pathway to get him seen, & cos the schools were lazy the doctors were like we have no evidence blah blah & wouldn’t push for us. It was just an era long nightmare. He’s not on meds yet but that’s our aim. It wasn’t taken lightly making that decision but something has got to give somewhere because I’m now ill myself & I’m not as able as I once was. Wish us luck! Xx

P.s I remember saying to a woman he has undiagnosed disabilities and she has a Down syndrome child. She said it’s easy for her with people and doesn’t get comments because you can actually SEE the disability & that it must be harder for me because you can’t see my sons. She was very right. They just presume you’re a crappy parent that lets your kid run riot

Hi Please seek professional help for yourself ...
if you are suicidal you need urgent help

In our area, OT would help you out with creating a safe save for your son to sleep. We had a risk assessment done when dd was 9/10 and kept running away/climbing out of third story windows into the bay window. They conducted a risk assessment and said if dd escaped, she was at high risk of death (HFA). So they paid for locks /alarms on doors and windows.

In England you’d qualify for short breaks respite, which would enable you to get a handful of hours a week.

Dd goes to a MS school, but I am vocal in the borough regarding SEND and have gone in to talk to parents at our local ASD special school. Parents there seem to have a very tight knit group - I hope you have the same At your son’s school.

We’ve just had a risk assessment done. That’s what I meant above I just am not familiar with all the terms yet. It’s really good, it’s for your benefit xx

@BishopBrennansArse thanks for all the information.my son has just been discharged from speech and language as they said he's just not ready as he will not focus on anything and when I mean he won't sit down I actually mean he doesn't more than a second. He's had two courses of speech and language and we've tried the Hanen method to no avail ,they've said he's not ready for pecs,makaton.his mental age is around 8 months*he's soon to be 5😢.other autistic children all seem to like something ,like ipads, phones, or they can talk a bit or are working with methods of communication which are getting them somewhere.one might see why I feel such despair and such desperation, it's so frightening to think this may be as good as it gets for him.and it's not good at all.I saw a 20 year old boy with his dad today moaning loudly flapping his hands and he had a chewy toy in between his lips, he was so innocent ,broke my heart.

Hi OP,

I just wanted to send hugs and say hang in there, things WILL get better.

I’d just say make sure you get all the help you can for him, and for yourself too : Keep going with the speech and OT, take portage and respite care if offered, etc. I also think him starting a specialist school soon will definitely help him, and they’ll give you lots of support/ideas - but it’ll also give you a break so you have more energy for him and your other DCs :-) All the best xxx

@sunny thank you for your kind words.I really have no option other than to struggle on.wish it wasnt our life,but that's all hypothetical as theres nothing to do except live in hope.I used to be fairly religious in that I believed that there was a higher something guiding us,this belief has been lost on this journey. I've never felt more lost or more angry that a God I believed in would stand by and see me and my young family suffer so much and to teach us what? ?I've always been humble always felt the pain of others as if it were my own, always been ready to lend an ear,a hand or my last pound,it has served me well by filling my soul with a deep sense of humanity. Why has it been lost on my when I need it back. Family have let me down so badly by living close and not helping at all.

I think they're making the mistake of thinking if he's not sat down giving eye contact he's not focusing. It may be that he has a depressed limbic system and the constant movement helps him focus. I really think SALT shouldn't have discharged but unfortunately most are under so much pressure they will discharge as many kids as possible to reduce their caseload,

You say he won't engage with an iPad at all? I'm trying to think outside the box here. Thing is if you do find the way in to enabling him to communicate he will use it - it's just finding the way that he can access that is the frustrating part.

I did see somewhere a charity that provides emergency funding for safe spaces I'll try and find it. I'm at a family event now but will try and post it later - I think if you can at least get some rest knowing he is safe everything else will become a bit easier for you.

Charity is Newlife. Sorry can't stay on but you can visit their site here

@BishopBrennansArse I'm going to look up limbic system and that charity.I've just been to b&q bought all sorts of devices to secure the house in the meantime. Thank you again

Your son sounds rather like ours - he's now 10 and we still don't have a recognisable form of communication. We have managed to stop the pinching by responding to him and letting him lead us to what he wanted, which is generally food! He's now learnt to lead us to different corners of the kitchen depending on what it is that he wants to eat (toast, crisps or proper food). In terms of bedtime, once he could climb over a stairgate, we put a bolt on his door. It's not ideal from a fire risk perspective but it keeps him in his (box)room; he has a bed, a cupboard fixed to the wall (he destroyed a chest of drawers previously) and some toys on the floor. Getting out to the toilet is not an issue as he's not trained yet. Oh, and our son doesn't do iPads either ...

@EggysMom have you found it a struggle too?was your son always full on or relaxed ?I can accept his Autism, have been at peace with it for a long time just can't deal with the challenges these behaviours cause and the fact I can't do anything to change them as he's of totally no understanding.

SALT is not just about speech, it’s about communication and he definitely has communication needs. Some professionals are really very lazy. I would be tempted to say you need more help with his communication and try to get SALT again. My dd has HFA and generally very verbal and at an age expected level (11yo), but this is expressive speech only. Her receptive speech is pretty delayed and she has trouble understanding abstract language. She gets SALT for this also.

@WhatAMum01 At that age, our son was pretty full-on. We managed to get him a place at a special nursery for 3 mornings per week for the two terms before he started school; and we actually started him on time instead of delaying schooling (mid-August preemie) just so we'd get a break he'd be around other children more. School has been good for him, he's seen how other children behave and what they eat, and he's probably learned more from his peers than at home. But even school struggle with communication, it's still just him leading us to something he wants.

@EggysMom he sounds so like my son.my son will be 5 by the time he starts school but yoingest in class,I just hope it calms him down.school will be my respite .Hv confirmed to me today there's no respite on offer at all ,will have to self refer to OT and that's it.they make it more depressing with lack of help.

I’ve been exactly where you are, my son is now 8 and is now pre verbal, his behaviour has improved so much since starting school. He goes to a school just for pupils with autism and they have seen all types of behaviours. Things will improve I promise, haven’t read the whole thread but wondered if he is using any communication tools, (pecs/speech device etc), my sons behaviour definitely got better once he could communicate what he wanted. He uses s speech device now and it’s brilliant, has cut down on meltdowns considerably, we still have meltdowns on an almost daily basis but usually only one a day, and sometimes I can calm him within half an hour. If you’re not happy with the school once he starts then ask to see the educational psychologist who can help get him into the right school.

@moons of Jupiter thank you,gives me hope. No my son has been twice discharged from SLT as he won't focus or sit.they say he's just not ready for any of it.he starting special needs school but it's a mixed one.the non stop vigilance is killing me,I'm on non stop edge trying to keep him safe and to stop him destroying my home.it's exhausting.

A good SALT will realise that he is better able to concentrate when moving around and work with that. He may not appear to be engaging but he is - for instance I as an autistic person can't make eye contact and concentrate on what someone is saying to me. So I look at person's nose or forehead - I 'mask'. Your son can't fake it. But sitting still and looking at someone and taking in what they are saying is pretty challenging.

It's frustrating for me as I really want to help, but because we figured out our son's communication style (which to start with was leading us to things like a previous poster, he's still minimally verbal but can say some things now) it's become second nature and trying to give you ideas on how we achieved that is hard (it was quite traumatic for all of us going through it and I think my brain blocked it out a bit).

But I do sympathise so, so much. I almost wish I could meet you and try and figure it out (don't worry I know that's creepy and inappropriate that's just me wanting to fix things).

@BishopBrennansArse thank you so much for caring and trying to help me,especially coming from an Autistic person who understands the challenges better than most people.I agree with you that his learning should be on the move as he can't sit still,it hadn't occurred to me that he might be taking some stuff in,its just he hasn't shown any evidence of it.,I also agree that some of these professionals are lazy, so on their feet and trying to work with a boy like my son would be hard hard work. I wish there was more provisions and care in place to give children like ours a proper chance,it's head bangingly frustrating.

I work in a special school and your ds sounds similar to other children I have worked with so hopefully the school your ds is going to will make a positive difference.

At our school we have a family support worker, she is amazing at finding charities to fund items and suggesting how you can access more support. It might be worth seeing if there is someone like that at the school your ds is going to.

In our area we have something called CYPS who are part of CAMHS. They are nurses who specialise in supporting young people with a variety of issues including autism. I work closely with the nurses from the team and they offer support in the family home. Our family support worker refers the families to them.

In my experience families have to fight really hard to get the support they need so don't take no for an answer.

I would also try and get social services help. Some of the families I work with have had to push hard to get their involvement and they have certainly never tried to take the children away - far too expensive.

Sleep also makes a huge difference- keep pushing for other suggestions and support.

@lorisparkle thank you that's good to know that there have been kids like mine and they've been helped at their special schools,I'm pining all my hopes on this school,because really u have nothing else. Son is on a waiting list with Camhs for adhd assessment but they offered nothing when I stressed my situation.I hope the school he goes to has a support person like your school.I am anxious though about the school as I've learned that initially they were a provision for Mild to moderate learning difficulties /disabilities and due to the demand are now a special needs school for all,however they apparently haven't recruited any more teachers or more specialist staffing to suit the needs of the more severe,such as my son. My biggest worry is he'll just be left to Potter.

Just checking in to see how you're doing, OP. Been thinking of you.

@BishopBrennansArse I'm ok thanks.today attended a support group for Autism and met a parent who has a child who is 11 years old and is almost identical in his behaviour to my son. This lady obviously had years of experience on me and she detailed many therapies and help she has had with him over the years,he also attends a very good special needs provision. What scared me and really depressed the life right out of me was that he was exactly how my son is now but at age 11 and she said he'd remained consistent in only how challenging he remained throughout his life.I think this just highlighted my worst fear that my son too would remain as he is and just grow larger and stronger at the same time. I believe now there are autistic children like my son who might never change.it really kills me.I'm trying to get a positive out look but how can I? I'm only human.

I just want to send buckets of sympathy. I have three kids (11,10 and 6). My youngest two have autism and adhd. My youngest is especially hard work. Some language but is very hyperactive. She just won’t sit still and barriers to understanding. It takes two hours to get her to sleep at night and she wakes between 2 and 5am (I’ve been up since 2.30am with her). She’s at a specialist school who are amazing. But the work and stress is constant. Ironically I had her as my older two (one has asd) close together and I felt I’d missed out on a typical time raising a baby due to one having asd and how hard it was. Ironic as my little indulgence actually has more severe asd than her sibling. Most days I could weep. I’m tired, so lonely and burnt out. Since 2.30 I’ve been listening to my dd laughing hysterically and making random noises all whilst my husband gets a nice night sleep in her room. I hear you on how hard it is. If you ever want to chat feel free to dm me.