Son has ASD? Please help :-(

[Mumrunragged]

Hi everyone, I'm new here so hope this is the right place to ask for advice.

I'll try to keep this short so I don't bore you with too much detail. My son is 15 yrs old and was diagnosed with autism in January this year. He's in yr 10 at high school but as been on elective home tuition since yr 8 after being bullied at school.

He's always been a very quiet, shy lad but did have a small group of friends all through nursery & primary school. Things seemed to get worse in high school & he slowly became more & more withdrawn enjoying time alone in his bedroom doing his own thing.

To cut a long story short, we're now at a stage were he very very rarely speaks & practically lives in his room. He can speak very well & is very bright & intelligent. He just chooses not to speak and communicates when necessary through sound, shrugs & head movement and the odd word now and then.

He's been to Camhs & spent some time on the day unit there, we've had countless appointments with child psychologists, councellors etc. been referred to social services at least three times. My son just won't engage or speak to anyone, he gives no eye contact & the rare times I've actually managed to get him out of the house he's a nervous wreck & you can clearly see the discomfort he's in leaving his comfort zone.

Some times I just feel so bullied & helpless, of course I want to do all I can for him I love the bones of my son. I've been made to re register him on a school roll so that he can have hospital home tuition. That seemed to go well at first, the tutor visited and I had to take work to his room and bring it downstairs when completed. He was hitting and exceeding targets of his year group in maths, English, science & ICT. Sadly because he wouldn't engage with the tutor personally that was pulled and I was told I had to get him into their teaching unit full time. How they expected me to do that when he wouldn't even come downstairs for the tutor for an hour & half 3 times a week was beyond me but I agreed to try.

So far I've been unable to get him to leave his room and go to the unit, Monday will be the start of my 2nd week of trying. I've done everything I've been told to do, take away his computer & only allow him limited set times on it so he has to earn extra time on it by engaging with the family and going to the unit. I've been told when he does come downstairs not to ask him what he wants over & over and not to give him options he can nod, shrug or shake his head to but to simply ask once and wait for him to speak. I've tried all this for over 3 weeks now with no change. He just spends time reading, drawing etc when his computer is removed and will just return to his room when I don't give options. I know when he does come down its because he's hungry, that's basically all he comes down for but not offering a choice of food options and waiting for him to tell me what he wants is not working.

I ve been informed that if I don't get him to the teaching unit on Monday, I also have to fill in a caf? Form that day too, that they will refer us back to social services. I would just love to know I'm not alone in all this and would dearly like any advice anyone can offer :-(

TIA x x

Hi mum, and welcome to the board.

I have no advice for you but wanted to say Hi and to let you know that this is a great place to come, to chat, get advice and just vent if you need to.

I am sorry you are going through this with your DS, it sounds really hard.

I am sure someone will be along soon who has more experience than I do.

Good luck

An ABA tutor + Interhigh sounds like his best (only) way of accessing an education right now. It'll cost the LA but a bit of research will give you a viable alternative to their patently unwworkable current solution.

If he has a statement ask for an urgent annual review to get it put in place. If he doesn't then threaten them with the DDA if they don't get it in place ready for September as a matter of urgency - how dare they threaten you with SS a fourth time! Like that's gonna do anything but potentially cost em £4K a week if you throw in the towel and say "take him & see if you can do better!"

www.interhigh.co.uk/ Have you explored doing high school online? He could stay in his room and still access the NC. They'd have to organise inhome invigilators for his GCSE exams but they owe you BIG TIME!

Get in touch with NAS & ambitous about autism for support. ABA may have the details of local tutors. IPSEA may also be able to advise.

Ask for an urgent referral to the Maudsley Autism Clinic - ring em yourself to get things moving. There is no excuse for you not to get a referral via the pead or GP, cahms will have to agree to help follow up any recomendations locally - but again they have failed him so spectacularly history there is NO excuse.

It's disgusting your son has been totally FAILED by your local authority and has been allowed to get to 15. The people dealing with him obviously don't have the skills to help you, so need to refer you asap to someone that can. The maudlsey autism unit would be my first port of call as they know their stuff iykiwm.

Put a call out to WetAugust!

Has he got a statement? If not go to the IPSEA website and apply TODAY, and then spend every evening trying to get hold of someone on their helpline, - or SOSSEN!

BTW, - you don't ever have to fill in a CAF!

Justa, this boy is 15. A CAF, as much as the SS referral, is simply a stalling tactic. Nothing will be in place by the time he is 16 via this route. Any SA will be delayed pending the CAF which will be regularly rescheduled......

And when/if it ever happens all the 'parenting' solutions will be the initial referrals, again costing time.

Hi

I hate to say this but as he's 15, if he doesn't already have a Statement, he'll be unlikely to get one. He would need to obtain a Statement before he reaches 16, as they are not issued after the age of statutory education.

I know many, may families with mid-teens like yours who cannot (through anxiety) or will not (through lack of imagination about what their future will be like) engage in education. At that age it's almost impossible to force them into a course of action that would benefit them.

If you still have Connexions in your area then make an appointment to speak to a Connexions Special Needs Persinal Assistant. I have stressed the SN as not all Connexions PAs undertand SNs or know what options are available.

As your DS is so socially isolated and lacking in independence he would definitely benefit from a residential FE placement. Connexions can arrange that but you'll need lots of reports (which you will probably already have obtained over the years) as evidence of need. Ask CAMHS to write a report stating what sort of educational placement they thik he will need.

Take a look a National Specialist FE Colleges (NATSPEC) which may suit him if Connexions can get funding for him.

But ultimately, if he won't engage then there is little you can do. It's heartbreaking.

I'll probably get flamed for this - but this is the danger in going down the Home Ed route. It may seem the perfect solution and for many children with ASD it is, but you are effectively 'out of the system'. And that means the LA can get away with ignoring your needs until such time as statutory education ends and, without a Statement (and even with one in some cases) the LA ceases to have responsibility for you.

Sounds like they need to address his anxiety around speech, also. I don't think he chooses not to but that he is unable to speak around people he is not comfortable with. Taking any pressure of him surrounding the expectation to speak will be a big way of helping him imediately with a part of his anxiety.

Have you heard of selective mutism? www.smira.org.uk

I would also 2nd trying the maudsley from the advice given.

Thank you all so much for your advice & support. I'm now checking out all links & organisations suggested. I will make notes & discuss everything mentioned with the head of the unit tomorrow. My son has been statemented, Camhs were threatening to take him into a psychiatric hospital if I didn't get him into the day unit by whatever means it took. I was so destraught at the thought, dad and I had to literally carry our son down the stairs, forcing him into the car in tshirt & boxers with his clothes & shoes in a bag for him to get dressed into enroute.

He still wouldn't get dressed & I had to get in the back of the car & force him to get dressed whilst almost breaking down & begging him to put his clothes on while one of the Camhs staff stood by watching my agony. My pleas that it was tantamount to child abuse fell on deaf ears :-( x x

Hiya mumrunragged

Firstly, very well done for getting the diagnosis and statement in place. And for finding mnsn here and most of all for succeeding in getting him into the car.

The next step (if you haven't) is to apply for DLA. Get the form here so it'll be date-stamped and hence backdated to the phone call. Download the cerebra guide, and fill in every last horrible detail on the form as your son may well be entitled to high rate in both categories. Even if you are financially loaded, do it, as DLA opens doors in terms of disability registration, social services care, blue badges for parking etc. It also means you will be formally recognised as his carer which, if you're not working, can mean a small benefit and if you are means that you are eligible for flexible working.

You are the parent, it is really ok to over-rule his wishes, by force if need be. And you can insist on medical care till the 18th birthday. He is simply too impaired by his asd and by the fearfulness to have any sensible autonomy about treating this illness (and I don't mean the asd is an illness, I mean being trapped in his room, mute with anxiety). An adult would also be over-ruled because refusing to leave the room or speak would mean starving. "Sectioning is the right to receive proper medical care, even when you're too mentally unwell to want it".

You might also want to speak to a solicitor about getting court of protection / guardianship set up so that there's no risk that your DS will just wait till he is old enough to be considered an adult, and then decline social services, education, parental help and then isolate himself again.

I've seen young adults with similar back stories and, without intervention, the outcome isn't pretty so please, please, please have faith that you are doing the right thing by imposing the recovery process on him.

If you had a severely anorexic girl, I would guess that the guilt from seeing her unhappiness when making her eat could be offset by your knowledge of the benefits. Long-term, this is the same.

As he does have a Statement I would write to the LA asking what provision they have made for his post-16 education. It would also help if you could get CAMHS to write a report stating that he needs specialist residential placement to support his lack of indepedence etc.

Otherwise the LA will probably cease his Statement as soon as he's 16 and you will have to lodge an appeal to TRibunal to obtain suitable post-16 education.

The Head Teacher of whichever school he was enrolled at in Year 9 shouls have brought together everyone and all the Agencies involved with him at a multi-disciplinary meeting to draw up a Transition Plan which should have detailed what his post-16 provision should be. If that didn't happen then the LA should hold a MDM as soon as possible.