I can't shout HELP any louder any longer

[hangingon]

Firstly let me make my apologies and please hear me. I do not wish to upset offend or dismiss anyone by what I say. I KNOW there are stories worse than ours infact I would imagine it is the 'norm.'

As I said in a meeting with both chief execs. of the relevant NHS trusts I dont want sympathy I just want help for my Son.

If I placed together all the detailed letters I've written to GP's, Consultants, Critical assessment Managers, CBT therapists,

every member of each individual NHS board, MP's etc etc I would now be a cerial novalist. The 100's of hours on the phone

trying to get someone somewhere to give our Son (22) help. My personal health has deteriorated and I'm mentally exhausted

and close to cracking at times by the fight of the last 6 yrs undertaken for my Son and by living with my Son. Our family has

hung together by a thread and other members have become ill as a direct consequence of this never ending knightmare.

 

My Son was diognosed with OCD/panic attacks 6 years ago. We knew he was not quite right (he had been difficult all his life)

but were totally and utterly ignorant of what OCD/Panic attacks meant, all we knew was we feared for his life. Therefore we had

no option but to totally trust the professionals(?). We dared to suggest Aspergers as to us he had symptoms of it. It was dismissed.

Finally after I exploded (a regular occurrance last 6 years)and demanded the proper test for Aspergers it was done. Result- some signs

but also had a close friend for many years who had aspergers who he admired and may have copied. Reluctantly we therefore forgot

Aspergers and concentrated our efforts on OCD.

 

Now 6 years later after a review, only undertaken after Dad exploded again,(Our son worse rather than improved under NHS)His new psychiatrist

said and I quote 'I'm no expert but I would like your Son to be tested for Aspergers' This time at Sheffield Aspergers Centre. Result he has Aspergers. It explains a million things but does not help with the hell horror and torture he has had to endure whilst being treated(?)by

on the most part time-filling novices. So our Son now deeply rooted engrained in OCD for years now has Aspergers to contend with also, officially.

 

We have been funded for 5, 1 hour sessions at Sheffield Aspergers centre, which is great (again fight required)but in my opinion having Aspergers in ignorance whilst also having every growing OCD, things are too deep set. I feel he needs intensive (possibly residental )treatment to help him 1. Come to terms with the position 2. Helped to fully understand what it is 3. Given some HOPE that there's life with Aspergers and OCD. It is a quite remarkable testament to his depth of character and ingenuity that he has not gone insane and manages to function the way he does. He has our love but also my deepest highest respect he is more of a man than I could ever wish to be. I would have topped myself. He has always always said 'I wish I could talk to someone that could give me something to work with to understand ME and for me to understand be given the equipping to fight this.

 

We are now exploring nutrition amongst other things, I am going to a seminar in Sunderland this week ESPA. BUT we need help from those who walk this walk and know :- What to do, Who to see, Who we need as a package of care support and treatment. What books to read. AND as importanlty who where and what not to do or see. As I stated I am exhausted searching explaining writing ringing. Give me what and who works. Thank you now 3am goodnight

[coolblue]

Hi hangingon

 

I can't help much in practical terms, I'm afraid, as our son with AS is only 12 and doesn't appear to have a problem with OCD. Just to say that I can appreciate your desperation, and your son's strength of character for coping with this for so long.

 

I would suggest that you focus on the OCD because that, in my view, is likely to cause significantly more problems than the AS. I get the impression that support for people with OCD varies widely across the country. I was once acting as an advocate for a guy with OCD and his psychiatrist referred to it as a 'notoriously intractable' problem. I've since come across people who say 'Oh, there's a range of therapies and treatments available. I got a lot of help from....". I assume you know about OCD-UK www.ocduk.org/. The best place to start to look for support with AS is probably the National Autistic Society.

 

Also, to add that Asperger syndrome, like all autism spectrum disorders, is diagnosed by identifying patterns of behaviour. 'Asperger syndrome' is a label for those behaviours, not a diagnosis of the cause of those behaviours, because we don't know what causes them. Lots of things might. It's possible that everyone with a diagnosis of AS has the same underlying cause, but that is by no means a foregone conclusion. What is likely, in your son's case, is that whatever is causing the OCD is also causing the Asperger's characteristics.

 

The problem with both OCD and AS is that we don't know what causes them, and there is controversy about what causes them, which is why it is not going to be easy to find treatment. The NHS is unlikely to fund treatments that might or might not help. However, there is support available. I hope you can find it.

 

cb

[call me jaded]

Hi, welcome.

 

I love the Sunderland people - first time I went it was a joy to be among people like me. Don't imagine that there is some perfect provision out there that you haven't yet found. From our own experience you take a little bit of this and a little bit from that and make something to suit yourselves, researching and trying out as you go. I've also found it helpful to concentrate on one area at a time, so I started with ADHD and did what I could about the extreme hyperactivity, then I added in things to address dyspraxia, then I looked at non-verbal communication strategies, and so on.

 

Sixteen years on and we're still adjusting, tweaking, trying again where we failed before. As we progress life gets easier, sometimes so gradually that you don't realise it. In the early days I used to keep a behaviour diary. When I look back at it now it's obvious how far we have come, but at the time it was overwhelming.

 

You have a really great start because your son is keen to take on new ideas. My advice is to try just one thing at a time because you have a better chance of understanding what works than if you throw everything in all at once. Good luck with the journey.