Severe ASD

[upstair123]

I was hoping some parents of older children with severe ASD were able to give an insight / idea of the future? I know every child is different but DS is clearly severely autistic and has high need requirements.

DS is 6 years old and severely autistic. He attends special school but the benefit is very limited. Potty trained and can dress himself but that's it. He is non verbal and has zero interest in other people, including his family. Super hyper and sensory seeking, waiting for a ADHD diagnosed. It is clear he needs residential care when he's older.

I was wondering how other parents found this process? Getting their children into residential? What age? Were you supported by the local authority? Or is it their 19 and no longer schools 'problem'. We do have a social worker for short breaks at the moment.

Also what ages did you find really hard and why? Was puberty really difficult? I just want to know what experiences people have had with severely autistic children have.

Thanks

I think it is very difficult to answer as they are all so different. I have two with severe asd. They are both now over 18. One is now finally settled in supported living but the teen years were terrible and he has struggled with challenging behaviour and mental health. One has always been a happy soul who once in a suitable school has sailed through.

Thanks for the reply and I know it's hard to predict the future.

I was wondering are they verbal? Just because you said one has struggled with mental health issues. Just wondering if you can tell if it's involved if non verbal.

I know about anxiety and being anxious with asd children, I was just wondering if I will know if my non verbal child is struggling with these as he ages

The child with mental health issues is non verbal. It was more around anxiety and I'd type behaviours. My other child hasimited language but can communicate more. I think the key issue is the level of learning disabilities. My eldest has much more profound learning disabilities.

The teenage years for us are difficult because of his size . He is also non verbal.
we struggle also with anxiety which can lead to aggressive behaviours with caregivers and he does have a severe learning disability so if I’m honest , I’d say it was more his learning disability then his s autism. The frustration for him is huge.

But i know some children who don’t have a learning disability but s autism and don’t suffer from the anxiety.
we will look at supported living from 18/19.

just bear in mind that Respite tends to stop at 18.

Thanks for the reply. I'm already worried about DS size at 6 years old. He already in 8-9 years clothes and so strong. He definitely has a learning disability and I think it's severe. That's good advice about respite but we currently don't get any. All we have (still waiting for it) is short breaks for activities but we have to take him to them. I know he will need supported living but worried about actually accessing it. Already worrying about places and care...

If you don’t have a social worker , request one, it’s a different dept for children with disabilities and the only way to access respite is through a social worker.
stay on these forums and anything you need help with, just post.
some of us with children who are severe will be able to help / or give you a handhold.

Respite for us came at around 11, but really I should’ve pushed for it earlier.
a social worker will be able to advise about direct payments also which you cause for a carer to give you respite on weekends, just plan ahead , the challenges you face now and how you’ll face them when he’s older and bigger.

anxiety in my child with s autism unfortunately manifests in aggressive behaviours towards his caregivers/ myself/ carers. He is remorseful after it which gives me hope that he will grow out of it.