Maybe someone can help

[yorkshiregirl44]

Hi,

Maybe someone out there knows or knows someone who has expereinced something similar to this.

My 17 year old son was dagnosed late with asperges syndroms along with this he has severe social and health anxiety. He never leaves the house and is in his room 23 hours a day or more.

He has had four sessions of cbt at home and was then expected to have the rest at the surgery, because of his anxiety he could not go...so they withdrew the treatment. There appears to be a blanket response to treatment in that someone has to have motivation and attend sessions. How stupid to think that after 4 sessions his anxiety would be at a level that he could leave the house, travel to the surgery and walk into a busy building.

Why do they set people up to fail.

I have spent the best part of the day trying to get hold of the manager for the mental health servises, eventually she did ring me back..nothing gained there.

My point is that my son is not been treated as an individual with his needs taken into acoount, he can not take care of hisself because he can not communicate with others due to his anxiety.

There is so much talk from the government about mental health servises and in paticular for young people, yet in reality its full of confusion, fragmentated and ill equiped to support someone with complex needs.

I know from my own battle with thyroid problems how difficult it is to be heard and here i am again with a different battle.

Your thoughts please

[Maggiet]

Is there an Autistic Society near to you? Aspergers is one of the Autistic Spectrum disorders. I know a lot of people that have been helped by them. Good luck xxx

[yorkshiregirl44 in reply to Maggiet]

There is a small agency funded by the nhs.....will have a look for nearest autistic society.

Thanks

[Maggiet in reply to yorkshiregirl44]

Hope you can find one near to you. We have one near where I live in Scotland and I have dealt with them through work but have also had good reports of the support they give xx

[yorkshiregirl44 in reply to Maggiet]

Thats good to hear.....im finding that people are just passing the book here at the moment.

Im going to see my MP to see if he can move things along.

[Maggiet in reply to yorkshiregirl44]

I think that's a really good idea. Resources are so scarce that it is, I'm afraid, the one that shouts the loudest gets somewhere. Sometimes these agencies forget the power of a mother's love. Please let us know how you go on and wishing you all the best.

[Maggiet in reply to yorkshiregirl44]

Me again! If you go to autism.org.uk and go to England, then the area you are in, I assumed Yorkshire from your name but realise that may not be the case, there is a list of all the branches bear to you. Hope it helps xx

[yorkshiregirl44 in reply to Maggiet]

Thanks..Yes from Yorkshire originally but now in Lancs.

[shaws Administrator]

I am sorry you are having difficulty getting your son appropriate treatment. It is ridiculous that someone with 'special needs' is not getting the assistance to help him improve. You need some experts in his field to help you and him get the service you deserve. I hope you find them.

[yorkshiregirl44 in reply to shaws]

Iv been looking on the government stratergies for mental health and it says that there needs to be a full package of care including education and leisure. Primary care need to buy in specialist commisioned services....they dont tell you anything about these.

One of the governments aims is that services should be accesible.......not so in my expereince.

[shaws Administrator in reply to yorkshiregirl44]

It does seem like a minefield to try to get information. I hope you are successful.

[shaws Administrator in reply to shaws]

This is a link I have just read:-

sovereignresearch.org/thyro...

[yorkshiregirl44 in reply to shaws]

Thanks, will have a look

[Clutter]

Yorks, I hope the Autistic Society will help and put you on to someone who understands Aspergers. CBT sounds too generalised for your son's needs.

[yorkshiregirl44 in reply to Clutter]

Too right.

Iv just found out that when my son had his initial assessment two workers came to the house, one of them was an admin worker who was adding his opinion to what was being discussed. I thought he was a practioneer....

[Marz in reply to yorkshiregirl44]

I am not medically qualified - nor do I have experience of your present experience. I was just wondering if there could be a link to your thyroid problems and your sons present experience. I see shaws has posted a link on the subject. Also I have read that LOW B12 and VitD can cause problems too. Then we have the much discussed problems with gluten and other allergy causing foods. Have you read the book - Guts and Psychology Syndrome - GAPS - by Dr Natasha Campbell-McBride. She had an Autistic son that she healed with the GAPS way of eating.... There are videos of her on YouTube and I think she has a website....

I do hope you soon find the support you need....

[yorkshiregirl44 in reply to Marz]

Thanls,

Iv heard about the connection before but not really found out more, maybe its worth a try.

[Jackie]

HI The most help for my grand daughter was an educational psychologist. It is quicker to go privately.

Jackie

[yorkshiregirl44 in reply to Jackie]

Thanks....im finding the older the person the harder it is to get help..not a child and not quite an adult.

[Jackie in reply to yorkshiregirl44]

HI Mine takes them up to 16+. good Luck.

Jackie

[yorkshiregirl44 in reply to Jackie]

Thanks Jackie

[Kel8]

Hi there

My son is 13 and has high-functioning autism. He is currently school refusing due to severe anxiety, has been suicidal and struggles to leave the house so I can totally empathise.

Is your son receiving CBT via your GP or via CAMHS? As he is under 18 CAMHS should be helping him with mental health issues.

Asking your MP for support is a good idea as I have done this in the past. The other thing to do is to contact the National Autistic Society - they have a helpline where you can get advice. I am also a member of a local group for parents of disabled kids who have been an absolute wealth of help and support. I am in Kent so mine wouldn't be any help but there must be something similar in your area. Again the NAS will point you in the right direction.

I waited 2 years for a CAMHS appointment after our original GP referral. I had an 8 year old with severe anxiety at the time. It is absolutely outrageous how our kids are left to suffer and we have to try and help when we have no training or experience. Mental health services are sadly lacking in this country - even more so for kids with autism.

Wishing you and your son all the best x

[yorkshiregirl44 in reply to Kel8]

Yes CBT was arranged through doctor, they offer sessions for people with low and moderate needs, my sons anxiety is severe.

Went to MPs office today, MP not available and left details with assistant. Not sure what will become of that.

Its not until you are faced with a situation that you find out that help is not readily available and it takes alot of detective work to find out whats available within your area.

Here we are on thyroid uk sharing information about a wide range of topics, thats because its upto date, easy to access and people want to help.

Thanks evertone