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Autism - Carers UK Forum


For issues specific to autism / Asperger Syndrome.
Hi everyone I have just joined.
I'm a single mum to a nearly 16 year old boy with autism and moderate learning difficulties.
I'm at my wits end, as a small boy I got used to his obsessions with things, eating particular foods etc.
The last year he has become obsessed with being in a gang, I took weapons off hi.
He has withdrawn from all family members including his father who he has refused to see from the past year we are separated.
Ben has developed quite acute ocd washing himself shaving won't sit at the family table due to him saying it's not clean enough.
He eats on the stairs...spends all the time in his room in fact most of the summer holidays in bed the whole day.
Camhs won't help saying its autism not a mental health problem, have been trying for 7 months to get help from social services disability team they like to bat each other off saying the other service should help.
I think he is suffering from depression although his autism is bringing out a lot of issues he is struggling with.
I'd be grateful for any responses k
Social Services have a legal duty under the Care Act to do a Needs Assessment for your son, and a Carers Assessment for you. The Local Government Ombudsman says they should be done within 6 weeks of asking. If they havn't done them, write and send the letter recorded delivery, to the Director of Social Services, making a "Formal Request" (be sure to use those words, for them both to be done. you should have a written copy sent to you.
As he is nearly 16, you need to ring our Carers UK helpline. Depending on what benefits he is receiving, he may be entitled to ESA or similar at 16, not 18. The rules are different for young people with a disability. Make sure that you become his DWP Appointee and you make sure the money goes mainly for housekeeping. Don't let him have it all, otherwise when he moves out into his own place he will really struggle. If you are on benefits yourself, this will change things, the helpline will explain it all to you. Don't miss out though.
Hi Katie,
I'm wondering if CAHMS are playing the waiting game because in your area they only see young people up to the age of 16? Have a look on the local CAHMS website and see if this is the case. Whether this is the case or not, it isn't good enough.

Mental health issues often go undiagnosed and untreated in those with autism as everything is blamed on the autism. You are right to get help now, too many teens with autism become so depressed/ anxious they refuse to leave the house. Once this happens, it is very hard to resolve.

Ideally, your son needs someone experienced and interested in both MH and autism.

Is he still under a paediatrician? If so, get them to refer him to someone who can help. If not plague the GP until he makes a referral. I'd also contact Youngminds and The National Autistic Society helpline for advice, re how to fight for support for you and your son.

Hi everyone I'm back again after a short break as update I now have a social worke who is a social care worker. She has only spent 15 minutes with us so far so we will see.
More problems ben now refuses to go to school stop he wants to go to an ordinary college not a special needs school which he currently is at!
We are looking into college if there is a place and if his needs can be met!
I've just noticed a large amount of money has gone been missing from my safe, the batteries had died but I had hid the keys obviously not good enough, I'm a single mother and work 3 jobs just to save money for our xmas presents which he has taken I can't believe it this the second time he's stolen from me.
He denies it and got angry is accused him I can't prove it but I know it was him.
Please help I'm so upset today
Not surprised you are upset, Katie. Have you worked out what he did with the money? Now he has done this twice, you are going to have to be so careful. You could always call his bluff and say that since it wasn't him or you who took the money, you have no choice but to report it to the police. If you can't bear to do that then tell him if it happens you will report it and be prepared to carry through with the threat.

Re mainstream college. Does your son have an EHCP? Be prepared to check the support he needs is already in place before he enrolls. Ideally a college which runs course for SEN students. All too often, help and support is promised but isn't sufficient or isn't put in place until it's too late. It's a shame really as it sounds like he would really benefit from a residential college which would teach him the skills to move on to supported living.

Now you have an allocated social worker push for support with a MH referral for your son.

Hi Katie
You mentioned in your first post that he had got caught up in a gang. I wouldn't be surprised if they had threatened and bullied him into taking the money. Take extra care and don't keep large sums of cash or bank cards where they can be found. He's probably too frightened to tell you and now he's caught between the two sides
Thanks for the replies it's very helpful. He had admitted taking it but said he only took a small amount which is just not true.
Bens behaviour at home is getting worse he tries to wind me up 24 7 saying things like he will tell our social worker I hit him etc which I don't of course!
He tries to control everything at home. I go to bed early sometimes just to get some peace!
Somebody mentioned residential colleges I'm specifically looking for places that cater for boys like ben who are fully functional non disabled but cater for autism learning disabilities, as ben is has been at a special school but felt recently he didn't fit in with the other students who have quite profound difficulties.
Any ideas welcome
Hi Katie,

Natspec is a good place to start: https://natspec.org.uk

A local authority will not help you find a college outside their own provision, I had to get my son (now 38) rejected from the local college - 2,000 plus students, he has severe learning difficulties, can't read, write or do any maths. he would have been totally bewildered there. Once he had the rejection as being unsuitable, the Further Education Funding Council agreed to pay for him to go to Fairfield Opportunity Farm near Warminster. I'm not suggesting this is suitable for your son, who has different needs, but if you look up this place it will give you an idea of what sort of thing is available outside state provision.
I know that around the New Forest and Bournemouth, where I live, there are various services which might suit your son, run by an organisation called Cambian. I think they have a residential college in Bournemouth now. There is also Coxlease School near Lyndhurst which have a small residential independent living type situation called Paper Bag Cottage. I'm sure they have other provision elsewhere. (I know several former staff members).
Realistically, you can no longer manage to care for your son, he needs more care than you can provide, so the aim should be finding a pathway through college towards some specialist supported living. The longer his bullying behaviour continues, the more difficult it will be for it to be reversed. So don't think about doing this to get him away from you, it's what he NEEDS. So often here, what someone NEEDS is not what anyone WANTS.
Hi everyone hope u s doing well.
My son has gone back to school which is great he will start a one day a week college day soon.
Trying to get him to camhs re his eating or lack of food intake.
He recently got involved with a scam which just confirms his vulnerability a lady off instagram told him he had won the lottery in America of course he believed it they wanted money etc.
Makes me sick the internet breeds these monsters.
I'm very worried that my son who is sixteen says as soon as he's 18 he's leaving to live with his friends this is not a new thing he's said it for ages and I believe him!
I know kids stay stuff but I know my own son and he's very determined he thinks his do called friends will look after him they won't they will get him into trouble as he's extremely easily led and I'm afraid he will get into trouble with the police.
I can't imagine life without him here
I keep thinking what will I do???
I've cared for this boy all this time and I'll be worried sick if he goes
I'm very sad 😭