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Help! What do we do...

paulc

Hi, Please help us, we don't know what to do.

We have a 12 year old boy ( soon to be 13 ) who we love, but he is very difficult to manage. We believe he has aspergers syndrome ( classic symptoms ), he hasn't been to school for over 8 months as he gets very depressed at even the thought of it. He has terrible sleeping problems as only likes being on his own. He has anixety and panics - for example a trip to London was abandoned as he simply couldn't deal with all the people, noise and bustle. He can also sometimes be very aggressive and nasty towards other family members and doesn't care or can even read anyones feelings, doesn't understand humour and rambles facts that only he could find interesting wether your listening of not ( which we do - but after the 60th time of hearing the history of the Nintendeo Corporation... ;) ) etc. Seriously none of our other children act in this manner and they are very loving and caring, and the other 4 children get on really well and they are a pleasure to be with - a normal family life.

My Wife and I have done our best - we dont claim to be perfect but he is the oldest of 5 and we have a responsibility to the others as well and we have no help from anyone including family members, this of course is putting a huge strain on our marriage and family life.

He is under CAHMS after I convinced my wife to seek help via our GP about 12-18 months ago. They have offered little help if any. As he has grown older he is getting stronger and more difficult to handle. This all came to a head a few week back when he threatened our youngest boy and my wife with a knife ( he has done this before including threats to burn the house down and kill everyone when sleeping which we have explained to CAHMS etc ) she had no option to call the Police as recommended by myself and CAHMS, the net result was him nearly being tazered and carted off for a night in the cells. He recieved a "final warning" which apprantley I one step from a criminal record - net result we will never call the police again or he will face a criminal record for the rest of his life.

He has simmered down but we now have the joy of a Social Services chasing us for a "7 day Assessment" ( whatever that means ) the leaflet they sent looks horrific, essentially as a parent there must be a reason why he behaves this way and it must be the parents fault. Do we have to do this, i'm not keen as i believe his issues are more health related and we don't like the idea of social services ?

He also has the youth offending team who has told us after talking to us for 15min that he's " just a naughty boy " - no surprise that from what else they said reading between the lines we are bad parents. They have offered " team 4 " not sure what that is either... Do we have to do this?

He has no official diagnoises apart from being depressed, when we turn for help we get to opposite - it was better when we coped alone. My wife and I are at our wits end, we love him so much but we don't want anything bad to happen to him or the children and we don't trust any agencies as they all seem to lie on the pretence of helping and then tell you "you have started a process" etc and they don't seem to have his interests at heart..

What do we do, we don't know - we are both confused and worried..

 

  • Hi Paul, 

    In addition to calling the helpline you might want to take a look at some of the content available on the NAS website, I realise you might have already seen this and it may not help immediately, but it could be useful as things move forward. 

    If you haven't already read it then the general information about what is autism may help, as may our section that addresses diagnosis and how you can find out further information and possible routes that may work for your son.

    Obviously this is a difficult time for your family and some of the advice in our section for parents and relatives may help. 

    You may also want to look for local support to help you through your current situation, you can search the Autism Services Directory to see what is available locally.

    The main thing you should be expecting and asking for during assessment are those outlined in the National Autism Plan for Children. Page 3 includes the Essential Components for a complete multi-agency assessment.

    The website also has a section that tries to help parents and carers understand challenging behaviour. You may find it useful to read through this along with taking a look at the following information about getting help from social services, despite the difficulties you've faced so far. 

    You may also, as things move forward, want to look at some of our content about education, to see if you can access support to make your son engage again with school - even if that might seem a long way off right now. 

    I hope some of that can help Paul, although as before we'd really recommend contacting the helpline so they can provide some direct support to you. So please do consider calling

  • Hi Paul,

    I'd really urge you to contact the NAS helpline immediately about the situation that you're facing. As mentioned earlier you can find their contact details on the following page -

    http://www.autism.org.uk/our-services/advice-and-information-services.aspx

    The direct line is 0845 070 4004

    They should be open until 4 tonight and I think you need to make sure your getting the information and support that you need to deal with what's a clearly difficult and escalating situation.

    So whilst the support here is important and other people may be able to advise you about diagnosis, please think about taking the step to call and they'll be able to talk through all the options you have.

  • Hi, Thanks guys :)

    Social Services said they " were concerned for the other children " we told them he has moved out to his grandparents. From the Youth Offending team etc, everything has gone quiet. We have a appointment booked with CAHMS , I hope they will step in, i'm not convinced though - sorry but they are worse than useless and there best advice is to " use our support network " - sorry but we don't have any

    As an update to a typical week...

    He went balistic yesterday, I slightly touched / moved his leg as he was on the sofa to lift my other little boy to bed ( he fell asleep watching the TV), he slipped down to the carpet and then went mad - with an intense rage.

    He hit me so many times that I had no choice but to restrain him to the floor, spitting, growelling threating to kill me, his mum, the other children. I held him down by holding both arms and sat over him ( no weight on him ) just to get him to a controlled position. ( what else should I do at this point? )

    My wife blamed me, first for touching his leg then for saying I am heavy handed by holding him down ( I seriously wasn't! ). I went the other room at which point he called the police and briefly hung the call up and then ran off, my wife gave chase in the car ( he had no shoes, but that didn't stop him ).

    I then had 4 police cars turn up looking for him ( this is no good as i know one more thing with the Police and he is up in front of court now ) so I had no choice to dismiss it as a accident. Meanwhile my wife and his granfather managed to get him back to normal and he stayed at his grandparents house.

    Next day ( last night )..

    His grandfather came round for clothes etc, he decided to come back on his BMX. I decided to back completly out of the situation as i feel dammed if i do and dammed if i don't - if he smashes things up I have to hold him ( usually hands behind back police style or to the floor where I can control the situation ) but if i do this my wife gets upset with me ( do you think i am wrong? ).

    He walked in calm and punched my wife in the side of the face threatened to kill eveyone, his grandad got him out. The net result was him trying to smash the conservatory doors in, he stole from the shed some wd40 then sprayed the whole outside of the house / windows / cars with it, smashed pots in the front garden, smashed the plastic front window sil.

    Eventually he calmed down and was driven back to his grand parents house.  

    I've had it... Is there a way I can pay for a diagnoses?

  • Yes, although I would never wish this on anyone it is a relief to know there's other out there who understand. It is very hard at times, it's frustrating because it's hard to know hwo to deal with it.

  • Hi im so relieved to know we are not the only family going through this...my son is 13 and has dyspraxia and just being diagnosed with asd, he can be very aggressive with me nd his dad , sometimes life is so hard. good luck to all x

  • I am having some of the same problems. My son is 13 and has just been diagnosed with ODD and Apsergers. He is being dealt with my CAHMS too. It took me years of fighting with people to get them to see something was wrong with my son. And I was told once he was diagnosed I would get lots of different help. Since being diagnosed he was put on melatonin, and I have had no other help.

    Yes I know the symptoms, but no one seems to know how to deal with the tantrums. My son too is getting bigger and stonger and can be aggressive and what works one time to help doesn't work the next. I feel so frustrated and worried. He isn't being seen at the moment as he won't talk to the doctor at CAHMS, I was told to call if I needed anything. I call after my son ran around the house kicking doors and screaming to be told his doctor is on leave for 3 weeks and another doctor would call, I heard nothing.

    I don't want him to have pills that will turn  him into a zombie everyday, but if anyone knows of a short term medicine/pill that can help when he has these espisodes, could you please let me know, so I can mention it to my doctor and look into it please.

     

     

  • Paulc

    ** You **need** a diagnosis **

    ** Before Social Services find another label for you and your family**

    ** Save and buy a private diagnosis, *don't* wait for the NHS as you will be waiting for ever

    ** Then find a good solicitor, the NAS web site has some good ones listed, your son is entitled to Legal Aid as a child.

    ** Don't wait until you wish you had

    ** You may find the private diagnosis does not get you as far as you'd like - but people will have to take notice of it

    ** Good luck and *Hugs*

     

    ** From: someone who wishes they had done the above

  • Hi Paulc

    I am sorry to read about the problems and difficulties you are having with your son.  A lot of it sounds so familiar as I have a son who sounds very similar and I can understand the confusion and concerns that you have. 

    I have attached below a link to the NAS  advice services that may be able to provide you with some help and guidance on the best course of action to take.

    http://www.autism.org.uk/our-services/advice-and-information-services.aspx

    Unfortunately there is no quick and simple answer but pushing CAMHS for a diagnosis might be the best way forward. 

    I hope that this helps

    Good luck :)

  • There's a section on this in Tony Attwood's The Complete Guide to Asperger's Syndrome (Jessica Kingsley Publishers 2007) which book is comparatively well known and might be in a local library. If you have a university near you they might have a copy, or a parents' group may have a small library.

    The particular reference is at the back, under frequently asked questions, subsection 4 on criminal activity includes something on a malicious sub group p335-6. Scary as this might sound, simply put, the reaction to being different may cause some people on the spectrum to take it out on family.

    It occurred to me to add this comment should you need to get hold of some guidance material fast, Attwood might be an easily accessible authority.  It might help you to consult Attwood on the whole range of manifestations such as sensory overload and special interests.

    Hope this is of some help.

  • I saw the reference to the Nintendo, is his obsession computing?

    My obsession is computign and I know about programming and hardware, but don't know much about gaming consoles, I would happily chat with him to find out what is causing the anxiety and triggers as a m8.

    Maybe tell him about a social forum that is specialised in computing, including the 'unethical' discussions.

    It has a number of groups including gamers 'crew'. I will not advertise publicly, but would happily pm the link if you wish. This may help give a release to anxiety to prevent him snapping.

  • I do wonder reading of paulc's difficulties, why there still seems so little understanding in social services, the medical profession, health services, and here a youth offending team. Whatever campaigns have set out to achieve, and whatever promises are made by Government, especially since the autism act, the promised awareness training never seems to happen.

    I've mentioned in another thread the lack of any real progress with the Living Fufilling & Rewarding Lives package, where the latest progress document on 1st April covering health and social services is still full of platitudes and generalisations that show no sign of any improved understanding. And then there's the requirements on local authorities to set up a lead on autism and provide better services - I cannot find out who the lead is, just get emails from a functionary without a title who makes standard pronouncements that they are doing what they are supposed to do.

    I guess the advice is to keep a diary, follow through all lines of pursuit with NAS, Social Services etc., and find out if there is a perents group in yoyur area or a NAS regional office that can help.