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Lack of support for autism and don’t know where to turn, advice appreciated

3 replies

Opal93 · 11/04/2021 15:12

This will be long but I don’t want to drop feed. My son is six and attends a special needs Unit in a mainstream school where he receives 1-1 support from adults there. They have been fab and as per his statement he gets sessions with a SALT in school. Prior to that he had speech therapy with the disabilities team. I feel he is well supported in school, but my issue is more I feel his needs are becoming much more complex at home and I just feel like I need to do more to help him. He is severely delayed for his age and needs the same supervision as a toddler really. He engages in a lot of self stimulators behaviour constantly and gets extremely overwhelmed and has meltdowns. His fine motor skills are very delayed and he is unable to dress himself or do any personal care tasks for himself at all. He needs help with every aspect of this both at home and at school. Although he can speak he has very little understanding of what words actually mean and putting them together properly so it can be very hard to understand him. For example, his was of saying hello to someone he runs up and pokes them and shouts “it’s a!!” His language is very muddled and disordered. His paediatrician signed him off as he has no physical problems apart from severe constipation but he gets the right meds for it now. He is signed off from the ASD service even though we completed workshops offered. He doesn’t go to speech therapy at the disabilities team anymore as he gets it in school. HV referred him to OT but we haven’t heard from them yet, probably due to COVID. He was referred to continence specialist but after one appointment she basically just told us to keep doing what we are doing to help him. So my question is, is there anything including therapies/medications etc that you get to help and who did you go to for it? GP haven’t been particularly helpful even though I’ve phoned and told them we are struggling. Could I get him referred to CAHMS? Or are there any good charities with good support? I just feel like in a lot of ways his autism is becoming more difficult as he gets older and I just wish there was more I could do for him

OP posts:
MrsDuBeke · 11/04/2021 15:56

Have you spoken to senco and 1 to 1 at school? My DS does some good stuff like bucket therapy to encourage joint attention. At home, I wait to see what he wants to do and then join in, no demands. School are helping him learn scripts to work out how to join in with peers etc. He often needs some sensory time after peer interactions in order to regulate himself.

BatleyTownswomensGuild · 11/04/2021 21:45

Do you claim DLA for your son, OP? It sounds like he would definitely be eligible for DLA. We receive £330 a month for our son and we have put this towards private SALT and OT therapy to help my son because (as you say) there's little support available from the state.

BatleyTownswomensGuild · 11/04/2021 21:49

Sorry - pressed 'send' before I finished.

We used DLA to pay for a private OT assessment to get a picture of exactly what areas our DS needed help with. (In our case, issues with balance, coordination and fine motor skills.) From there we have paid for regular therapy and it's paying dividends.

The DLA form can be challenging. We accessed support from our local Banardos Children's Centre to help complete it correctly. Do you have a children's centre/Sure Start place near you (unfortunately they have been decimated by funding cuts but they are worth their weight in gold if you can find one.)

Could the school help link you with a family support officer. We also had one for a few months and they gave us lots of useful strategies.)

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