To ask when things got easier with your autistic child?

[CosmicCoconut]

I'm at my wits end with my DS. He's 8. Diagnosed as Autistic and as having ADHD, ARFID, PDA tendencies and recently comments have been made by professionals about "something else going on but not sure what".

Life is unbearable with him. He is the kind of child that can only function on a one to one basis. As soon as you add another person, be it adult or child into the mix, he goes totally out of control dysregulated and won't stop until the person has left.
I have a 1 year old as well which as awful as it sounds was the biggest mistake I could ever have made. DS just cannot cope with another child in the house so every single minute of every day is hell on earth. Poor 1 year old is scared of him and can't even play quietly in the house without DS harassing her.
He's honestly a danger to himself, he has massive meltdowns and escapes the house and runs off streets away or punches holes in the walls and doors. He breaks everything he touches so we are left with broken toys and furniture as I've run out of money to keep replacing everything.

He doesnt sleep. Even with melatonin he still only sleeps 4-5 hours a night. He wont let the 1 year old sleep, wakes them up deliberately by being noisy or going into their room. He doesn't let me sleep.

I am exhausted. Ive not slept more than 5 hours a night for years. I can feel the impact the lack of sleep and constant stress is having on me. I can barely string a sentence together half of the time and have issues with my memory now. I can barely remember a thing from last year for example.
I dont really leave the house much as its impossible to go out in public with him and 1 year old so it means everyone is bored and frustrated stuck in the house.
Ive gained 6 stone in the last 3 years from the lack of exercise and stress eating.

Ive begged for help from professionals and I get nowhere.
They wont help. Its always a funding issue or someone who thinks they know everything based off of a 1 hour meeting.

I dont know what to do any more.
I wish I'd never had kids.

I have 0 family to help. Literally 0.

Has anyone else been through a similar experience? Does it get easier as they get older? Or worse? I'm scared of when DS becomes a teenager.

Hi, I am so sorry to hear what you’re going through. I have a 9 yo old autistic son who has meltdowns but not at that frequency. How is he at school, has he managed to make any friends there? Sometimes I find having another child of my son’s age round can be a distraction

Sorry to read about your struggles. it is extremely tough and no one understands how hard it is to look after ND children. I have 2 ND, eldest is 9. Around 7 and years old my DC was at his worst. As he is maturing he is getting ever so slightly better. I also have 0 help. When I visit my family abroad they do notice an improvement in my DC’s behaviour. So, there is hope.
Are you part of any SEN support groups? better than nothing I guess.
Do you have CAHMS involved? my DC have both ADHD too. Have you considered medication?

He was kicked out of mainstream school at 4 and was left out of education until he was 7 so this school year has been his first year at school in specialist provision.
He has gotten worse since being in school. He is totally overwhelmed. Can't cope in the classroom with the others so is frequently sent out to the segregation room and spends most of the day alone in there. He has 0 friends as he cannot function around other people. From what I've been told the other children are fed up of his overbearing behaviour and have started to become violent towards him as my son doesn't know when to stop and will continually invade personal space, interrupt, make excessive noise etc.

He has tried medication but he reacted badly to it and became violent so his paediatrician said she doesnt feel confident trying any more stimulants so he just has melatonin for sleep.

Is he in school op?
Do you have a partner?
Is there a holiday club provision in your area for children with sen? There is in my area and it’s excellent.

It’s so hard I know.

Cross post sorry.
Are social services involved? They should be and they can access some support for you.

What a heavy load you are carrying. Do you have any help at all? Is there a partner or Dad around?

DS was diagnosed with ASD aged 7 having been on the "watch" list since he was 3. He is mid 20s now. Each individual will be different and some of it is finding techniques for help your DS to feel calm and not overstimulated. Naturally this is immensely challenging for you at the moment with a small baby. I don't suppose the school holidays will be helping either, as your DS is out of his routine.

The only things I can think of are to try and build in ways for your DS to self soothe and create as calm an environment as possible. Will he wear headphones and listen to music or watch the TV? Has he tried Minecraft?

Are there any peaceful outdoor places you could head to? Maybe at times when things are less crowded or busy? Are there any National Autistic Society resources in your area? Sorry, If I am asking questions you have already considered.

Unfortunately DS has a significant amount of delay so he doesnt function as a typical 8 year old. He still needs help with feeding himself, dressing himself, working the TV. He's at the mental age of a toddler I reckon. So anything I set up for him to get on with, like nice calm quiet activities, he needs help with as he cant do it alone. But if I help him it means the 1 year old has to come with me which dysregulates him and then he flies off the handle.

I have tried giving him minecraft to play but video games over stimulate him and he gets agitated. He does watch his Ipad a lot which keeps him fairly contained but aside from having him on that 24/7 nothing else works.

SEN clubs have all kicked him out/ refuse to have him because of what hes like around other children. Im really not exaggerating when I say he needs to he one to one all the time. He just cant be around people.

I have tried everything regarding the resources in my area and none of them help. I begged for some respite over the summer holidays, even just one day a week to give me some peace with my 1 year old and was basically told that unless I say im going to kill myself or my son then they dont deem me in need enough.

They then went on to say im failing in my duty as a parent to my 1 year old as I don't do enough with them.

I am so depressed I can barely function.

This sounds really tough OP. I think I’d be inclined to try another doctor who’d be prepared to try other meds.

Refer yourself to the Safeguarding team to get social care support. That sounds scary but it's about getting support and your family needs recognised. It is not about failing.

Something like having a PA (someone who engages with your child, giving you a little break) could possibly help.
Have you got an EHCP ? He sounds to need a specialist school environment to help him thrive.

@CosmicCoconut if saying you are going to kill yourself is what it takes to get help, I would say that x

Goodness this sounds so difficult, I really feel
for you.
If accessing clubs or outside the home support is too difficult at the moment, I would try and focus on indoor regulation activities.

Do he play with fidget toys, or have a particular fixation at the moment?

I have had great success with an indoor trampette and a spinning dish chair, both provide some sensory feedback to help with regulation.
Do you have a garden? A swing can be an excellent way for children to calm themselves.

i understand all of these options cost money, does your local council have grant options for these kinds of things? Ours does under Early help and IDS teams.

If you don’t have a social worker yet it might be time to get one for ongoing support. 💐

I am so disgusted that our society allows this kind of suffering to go on - for all 3 of you but particularly for you OP. As a PP said, do whatever it takes to get support, it's not like you don't actually need it. If not for yourself, for your toddler.

I agree. I'm sorry I have no good advice OP, other than to keep on at the services that should be available to help you.

Where are all the agencies that were involved when your son was out of school for three years? I have been in that position with my two dc and it was a terrible time. However there was a social worker and various charities and agencies involved and someone knocking the door every day, even the police when my dc were running around the streets.

I didn’t get respite either as my dc were very challenging and it broke down and there was no one else who could do it.

Oh OP it's shocking that he was left out of education from age 4 to 7, that is absolutely appalling. I'm so sorry that no one seems to give a shit about your family.

Your DS obviously struggles to cope in the classroom but I really hope the school aren't being negative about him because it's obviously not his fault that he can't cope - god knows what the experience is like for him. Segregation any time he is overwhelmed is probably a good thing for him that helps him, rather than the negative that it would be in an NT school. Do they have a sensory room at the school? Does that help calm him? Perhaps you could set his room up as a sensory room if that does help - are you getting DLA? Make sure you're claiming all you're entitled to.

Is there anything he loves doing/is obsessed with/helps calm him? I would really look out for and pick up on those things and run with them. I remember ds being obsessed with phones and making a scrap book with him of cut out pictures of phones that he would look through and look through.

What does he like on the ipad? If he likes the ipad and can engage with that then I'd run with it personally, there is the potential for him to learn so much from it even if he is just watching cartoons. I know screens are considered terrible for NT kids to be on all the time but with a severely ND child in the summer holidays with a 1 year old as well, normal rules don't apply.

I agree with a PP that said about trying other meds. I just read on a US site that there are meds based on methylphenidate and some based on amphetamine as well as others that are non-stimulant. Not sure if that's also the case in the UK but definitely worth looking into whether there may be other more suitable options. The article suggests that if none of the meds work then it's worth considering if you have the right diagnosis (ADHD) which might fit in with the 'something else going on' statements. So I'd try the different meds and if nothing works then be pushing hard for them to figure out exactly what else might be going on.

So sorry things are so difficult and you just got unjustified judgement from social care and no help and the lack of education before.

Homestart might be able to help with your 1 child which obviously isn't the issue but may give you a few hours help each week if they have someone.

My sons hardesr stage was 8 to 11. He really struggled and life was incredibly hard for him(,and us)

He started to improve at the right secondary setting and with extensive OT support and SaLT. Its also a time where the brain goes through changes for everyone, so i guess they might have helped. Plus he got setraline which seems to help him.

I can help but hope the fact some children are easier teens than tweens and puberty suits some gives you hope.

My only other suggestion is applying for PA hours through social care and or respite. You might get a teeny offering if lucky. My friend has a PA who comes in each morning to give one to one attention to her child and get them dressed. It was a fight to get it.

Yes we are lucky to have a large garden and I got a swing for him when we moved here in February but he broke it after 2 weeks. He is so hyperactive and rough with everything that it wouldnt be an exaggeration to say he breaks everything he touches.

I have had success with a tonie box as he loves to listen to the stories on it at bedtime which keeps him occupied in the evenings as he doesnt fall asleep until late but he recently broke that too so I had to buy another which doesnt leave me with much left to replace the swing at the moment.

I have heard about those body sock things that are meant to provide sensory feedback and be quite regulating so need to look into that. I try my best to set up things for him to get on with indoors but he just doesnt cope with my 1 year old and dysregulates whenever theyre in the same room. I have tried explaining to him that when they have their nap we can do one to one things he enjoys like lego but that he mustn't wake them up. Yet every time he wakes them up without fail so then there is no time to do things with just him as I have an overtired and irritable 1 year old.

I am too. DS was obviously autistic from birth, the differences were so clear. He got diagnosed at age 2. Back then I naively thought that things would be fine as we live in the UK so there will be lots of support and understanding. How wrong I was. I feel like we have just sunk lower and lower each year with things getting worse and worse and every time I reach out for help its just denied. DS is very verbal and articulate so I think this is part of the reason professionals say we dont meet the criteria as they assume "hes not that bad" .... but they only ever see him for an hour at home when hes on his ipad. They dont see what life is like for the other 23 hours of the day.

This sounds so tough. The commissioned services through the council and NHS generally are shit! Are you getting DLA? I get that for my DS who's also autistic, I'm using it for private speech and language therapy which has been a million times more useful than what I got from the NHS. I'm looking at a private OT assessment next which from how you describe your DS I think would be useful for you too. They can do a full sensory integration assessment, identifying his sensory needs and working on strategies to manage them. That could go a long way with the meltdowns, eloping and sleep issues.

I had this situation. Begging for help and no help given. In the end my child pushed my other child into oncoming traffic and I had to manhandle him home while my upset hurt victim child just had to cope and follow along. I would hone social services and said if they don’t take him one of my kids will die either SEN child will murder his sibling or I will murder him. It broke my heart to say it and it was just a passing feeling I know I would never have acted on it. But I could see I was failing all my kids non were happy or safe so I told them to take him. They refused so I put in a formal complaint listing all the dates if made contact saying a child was at risk and then not helping. Said my family have this information and it will go to the press and every review into our case when one of these kids dies. They tried all my family asking anyone to take him and they all refused because they knew they couldn’t cope. I was framed as unfit mother to them. Anyway eventually we were given 10 hours a week restbite. Got few quite a few carers as non were able to manage son and would quit after one shift. Now we have an amazing carer who honest to god has ravens my family and my sanity. I use restbite hours to give my other kid my attention. I still hate my life am desperately unhappy and resent the hand I’ve been dealt (particularly when I see all the animosity to benifits claimants because I was working it’s the state who won’t provide my kid an education enabling me to work at least school hours) anyway I’m unhappy with no future or free time but my kids are much better.

you have to say you are a danger to your child before they will give you token help. Then you have to live with what you said and felt about your child for the rest of your life

Yes it does give me a small glimmer of hope. Stories about people who have been through it and their children have gotten easier with age is what I was hoping to hear about as right now everything looks black and I hate to even think about a few years down the line when he is a teen.

Not sure what you mean by social services should be involved?
We had social service's involved just to do an assessment for respite which isn't guaranteed and is very variable between LA,s on whst can be offered.

There’s other drugs they can try apart from stimulants.

Atoxomine?

Does he have a social worker? You can phone and ask children’s services.