Hoffmann Foundation for Autism
1,543 members • 301 posts

I new I hope I can get good advice 😁

Hi I have a 16 year old son recently had an dinosis of autism. Then discharged. I was told to contact the child care team for a needs assessment. They said it's cahams and cahams said it's not mental health it's social care and a learning difficulties. Um. Who's going to cover the bridge gap 16 to 18? Sadly at a loss. I too autisic raised 3 children youngest 16! I am under adult learning disibility team and have a PA to help with cleaning appointments speaking on the phone benifits support. I used to have a POA to help me but she passed away and I do it myself at 40 something. I have no one to help my son and I not sure if I can handle POA or care but would and do a lot of 3rd party things for my son through my PA who goes above and beyond to support me as mum. Hope someone can point me right and tell me my rights! Thangs

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I would first contact the relevant people in your area for a needs assessment as you are a carer. They will also give you some excellent advice and may Act as an advocate on your behalf - not all do but in your situation they might . Your next stop is then the citizens asdvice bureaux CAB who will definitely act as advocates for you and will Find out what needs to be done next, CAMHS may still have a role as your son may have additional as yet undiagnosed mental health needs. CAB will also possibly get in touch with your local autism services and hopefully set the ball Rolling there . However, it’s not all going to happen unless you push for it I’m afraid - it just doesn’t seem to work that way - ask those who already work with you for support in this - good luck.

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I have been everywhere emailed everyone from contact a family to NAS young minds and been to CAB my area there's a bridge gap for all 16 to 18 with autism. The only support I currently seeking now is right support in the foundation learning which my son is in we have a appointment with SEN and I will be desscussing autism out reach to support the college. And explains about all I gone through outside education. I am hoping they can make a referral somewhere. All my free hours are contacting anyone. I even on waiting lists for private companies who do social care for children at home for under 18s and willing to pay. As I don't pay for my care. I and my son gets pip there's money there that most don't get on benifits with job center without a disibility. It's all so hard when you have a parent (me) and a child both autisic I won't give up.

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Your situation does seem complicated. My own son was not diagnosed until he was 28 and by then he had developed co-morbid mental health conditions. I used to be a teacher myself and if By SEN you mean the SENCO, then they might be able to raise the problem and get other people involved. Quite often in these situations, better results seem to happen when professionals talk to each other. I have to say that from speaking to others, a diagnosis of ASD will not necessarily mean that a great deal will change straight away if at all, although your son should at the very least receive extra support at college. Does he have a specific learning disability such as Dyslexia/ Dyspraxia/Dyscalculia etc? Any of these could mean that your son is entitled to extra equipment and time for exams and coursework extensions. The ASD spectrum affects people very differently and it might be that he is not receiving the correct amount of support through PIP. My son gets nothing at present for the mobility component, yet he never leaves the house without support although he can make the short walk down the road to Secondary Mental Health services as he knows them all and is confident to go there. If you can strike up a good relationship with the SENCO then they might be a good starting point. I really hope that you are able to access the help you need and you may find somebody on this forum who has been in a similar 16 - 18 abyss and can offer you more informed advice than I can.

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Hello Pigletsfriend12, I hear your story quite often on our autistic adults forums and Facebook and it never gets easier to hear. It would help if you could tell me what area you live in. I can then ask around our contacts and the NHS to get you to the right Team who should be dealing with your son. If he was diagnosed recently, he should have a Treatment, Care and Education Plan initiated by the diagnostic service that made the determination. Go back to them and ask for one if they did not provide one. It should detail how he gets support for any needs that are identified and where to get assessments post-diagnosis. Secondarily, knowing which NHS area you are in means we can go to those we have contact with in the NHS and find out to whom exactly you should be seeing and get eyes on your case from NHS Management.

You may want to remind CAMHS that Autism is not classified a Learning Disability by NIHCE and NHS England Guidance. It would require him to have a co-concurrent Learning Disability not related to Autism to be so defined.

If you would like to find others who may be able to help, I suggest you try these Facebook groups and ask. Autistic Adults and Parents will understand your problems and help where we can. No promises though, we're Autistic not infallible! :)

facebook.com/autisticallies/

This main group also has a private group you can join where you can be more open about what support and services you are needing. Feel free to have a look through the page first and make your own mind up.

For something a little more boisterous and more suited to general issues there is Neurodiverse UK;

facebook.com/groups/1011343...

Both groups have members all over the UK, hopefully in your area too.

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my son is autistic and he went through the violent stage and then the non communication stage I was lucky enough to get mental health coming to my house and working with him and one of the main ways that they got him to express himself was to take his little friends out of his bedroom you know the ones with their little black beady eyes, and use them as pawns ok so which ones mummy and so which ones Katie's so, what happened and play Act it out on the kitchen table how it actually happened and then to ask for suggestions by saying, well you're really smart so tell me how do you think this would have been better played out for you. Or , ok lets try that and practise it for a bit Using his little toy friends is the best way for him to communicate with me because he's not actually communicating with me it's his toys that are communicating with each other the way he and I can practice and come up with more positive ways of socializing and expressing ourselves the way we would like us to communicate with him ,good luck people's, and just remember that autism is just an emotional immaturity so he just needs to control the emotions and think of mature ways to express oneself. The more practice these kids get at this way of communicating the better they become in real life situations and the better you're able to give them the tools that they need in real life social situations.

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