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Old 14 Nov 18, 05:20 PM  
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joyce66
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Help! Need advice re autism

Hi, I am having a really difficult time just now. After many many years my son now 13 was diagnosed with autism. I first wrote to my GP when my son was age 6. CAMHS diagnosed him after a long wait on 10th Sept but on 31st October they discharged him. Meanwhile his inability to keep himself safe and impulsiveness is on the increase. CAMHS say they cant do anything for him as its not a mental health condition. They refuse to look at Oppositional Defiany Disorder, Conduct Disorder or Pathalogical demand avoidance. They say its not helpful. I am just at a loss as to how they can just walk away. Is this anyone else's experience?
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Old 14 Nov 18, 05:36 PM  
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Megandllsmum
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Am I right in understanding that your son has only just been diagnosed? In my experience (with my daughter who has an autism diagnosis) the diagnosis process takes a long time... Mainly due to waits and after the diagnosis everything comes to a halt and you are on your own... That's when support organisations come into play and support groups are your friend. Try and look for groups in your area contact NAS they might be able to advise you of support for you and your child, I found after diagnosis the best thing for her and us was meeting regularly with other parents and children and you support each other, find out who to contact if you need extra help, getting back into Camhs after your diagnosis can be hard and you often have to go through a further waiting period, that said if you think there is extra help needed for your son pursue it and go out fighting for him, help and support is there, even if sometimes it feels if it isn't x
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Old 14 Nov 18, 05:41 PM  
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babywebb
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Have a look at we are beams , Camhs were useless with my ds 11 he was trying to hang himself daily yet they said he wasn’t high enough risk ! , we are beams are really good even if you just need to chat to someone or help with education statement they will help x
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Old 14 Nov 18, 05:45 PM  
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joyce66
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yes, he has just been diagnosed but there is so much going on that I am convinced theres something else going on. I cant attend a parenting class as all are on during the day and I cant afford to lose any income being a single parent. I feel I have been fighting for him all my life and still doors are being slammed in my face! Life has become just an existance and there are days I am on my knees when he absconds, is cruel to me etc etc. For CAMHS to do this to someone in need of help I just cant understand
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Old 14 Nov 18, 06:28 PM  
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joyce66
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Originally Posted by babywebb View Post
Have a look at we are beams , Camhs were useless with my ds 11 he was trying to hang himself daily yet they said he wasn’t high enough risk ! , we are beams are really good even if you just need to chat to someone or help with education statement they will help x
Thanks i have sent them a message to ask if they help families in scotland too. I really thought when we got to the top of the waiting list for camhs things would get better. How wrong was i! I hope your son is ok
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Old 14 Nov 18, 07:19 PM  
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babywebb
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Originally Posted by joyce66 View Post
Thanks i have sent them a message to ask if they help families in scotland too. I really thought when we got to the top of the waiting list for camhs things would get better. How wrong was i! I hope your son is ok
Thanks he’s getting there slowly just like a rollercoaster as soon as things start to settle it all goes up in the air again , best thing I done was got a small filing cabinet , so much paperwork after diagnosis and don’t be afraid to constantly be chasing things ( I feel like I’m always chasing school or paediatrician) you will get there x
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Old 23 Nov 18, 05:26 PM  
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Manny Haines
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Hi there,

I know exactly how you feel and what you go through at times.

Me and my wife have just been on a very good course through our local carers centre. It was on a Tuesday from 9.30 - 2.30 and ran for 4 weeks.
We were told by the centre that the "training" we got is far above what GP's, CAHMS, school teachers, social workers and other professionals get.
It was very insightful and hopefully will help us going forward.

I know you say that you work but if you find out when the next course is in your area then could you possibly take annual leave?

We are in the south side of Glasgow and have a carers centre close by have you got details or your local centre?

btw Did you know that there was a very scathing report published earlier in the year about CAHMS?
It was so bad that it lead to the post diagnosis team funding being taken away from Autism and sunk into CAHMS on the proviso that CAHMS do more for post people diagnosed with Autism.
From what I can gather basically CAHMS really never were "interested" in working with people with Autism but now they have to. KEEP PUSH CAHMS to do something and tell them you know about the report and extra funding they've now got!

Lastly, the facilitator who ran the course has autism and two children with autism so her insight and guidance is priceless.
She is very highly regarded. Tanya Tennant is her name, she works with a lot of local authorities and businesses in Scotland, you never k now she may run a course in your area?

All the best.
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Old 23 Nov 18, 06:43 PM  
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nadya
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Sorry to hear about the difficulties you are having-totally understand.Post diagnosis provision is appalling in my experience ds is still waiting after nearly 2 years to get help with his challenging behaviour-camhs admitted he had been forgotten and now his case worker is unavailable so he is still waiting!.So very frustrating so can totally sympathise-we have been on every parenting course and to every autism related charity etc and no further forward sadly.

Edited at 06:51 PM.
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