I would love to know how I go about getting... - Autism Support

Autism Support

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I would love to know how I go about getting compensation for my sons ruined life. He is 23 and just got a diagnosis of Autism.

diandy57 profile image
12 Replies

My son was under the care of the hospital from 6 weeks old. He had behavioural problems from an early age. My GP had sent a request for a ADHD assessment which never happened. He was finally told he had ADHD at 12 all though CAMS disputed this and re-tested him just to find the same results. He was thrown out of school, got in trouble with the police, spent time inside. It was only from his solicitor that he started the assessments to see what other condition/s he might have. Finally last week we where told that he was Autistic at the age of 23. His life has been totally ruined. I believe that the first hospital was to blame for this as they continual refused to assess him.

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diandy57
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12 Replies
gordoncanada profile image
gordoncanada

Hello,

I understand your frustration. You and your son can talk to lawyers until you find one who feels comfortable taking the case. A diagnosis may have brought more awareness into your son's life and perhaps more compassion and access to resources from the school. What services would have made a difference? The really important question is how your son is going to move forward from here. His life has not been "totally ruined." He has been on an angry path adopting unproductive coping strategies. You say he was told he is Autistic. There is a broad spectrum of Autism. If he had been diagnosed last year before the DSM 5 came out would he have been diagnosed with Asperger's because of low impairment and normal language development when he was young? How does your son feel about his diagnosis? Is he inclined to talk about it? Is he getting help to integrate this new diagnosis into his life? I wish him and you all the good things you hope to get out of life.

gordoncanada

breakingpoint profile image
breakingpoint

Hi, my husband feels the same as you about our son. I found 3 letters dating back to when my son was 3yrs old from the health visitor, stating home visit requested by mum concerned about sons behaviour, then at 7yrs I took him to doctors pleadings for help, he got referred and worked with a team of health professionals for a year only to be told it was pressure from school. I gave up after that. By this time he was 8yrs old and I just got on with it. By 14 he was uncontrollable and refused to attend school or go outside mix with others. By 15 I was relying on the police to help defuse situations at home. Social work got involved and they looked at his case again. Only to find out his case notes said Bordering towards Autistic behaviour (at age 7) yet to my face they said pressures from school. He was diagnosed with aspergers age 15. My husband cannot forgive them for this and we both feel we would have a different son today if giving the help and advice needed at 7yrs old. But for me I just want to move on from the terrible times we've been through and hopefully start to learn who my son is and with help/support will hopefully have some good/better times ahead of us. You can waste the coming months year's feeling bitter like my husband, or concentrate on just getting to know your son and fight to get the support you and your son need. Good luck. X

diandy57 profile image
diandy57

Hi thank you for my replies. Yes I am still angry but I am moving to get support for my son for the here and now. I am still struggling to do this despite what the autism act says. They now squabble over what area of adult care he should receive. It never ends..

breakingpoint profile image
breakingpoint

Hi Diandy, I totally agree, ive recently been told when my son reaches 18 it will be a different team of people providing support (adult support) and unfortunately there little to nothing in my area. It haunts me to think of everyone just disappearing, but a lot of it comes down to funding. Which totally enrages his dad who feels the very least they can do is provide the support needed for ever long it takes after failing him for all these years. We had lots of incidents with the police for his destructive behaviour and would of jailed him if not still a minor. He would of never survived prison. How traumatic that must of been for your son I can only imagine. My son's anger simmered down soon after the diagnosis like it was a huge relief to him, he also gets 30mg fluoxetine for anxiety and that's helped in a big way a lot more relaxed than before. I hope you get some support soon, CAMHS has been by far the best support iv recieved so far, they just totally get my son and his condition. Would love hear in the future how you both getting on. won't be long till my son's his age and ill be seeking advice from you both. X

Deepraj_Das profile image
Deepraj_Das

Besides a neurological disorder autism is a genetic disorder. So autism can't be cured but we can handle it with early diagnosis. Early diagnosis on or before the age of three is an essential and very preliminary stage. After diagnosis the early interventions can improve the autistic symptoms like attention less non verbal communication, stereotyped behavior and other cognitive disabilities.

As your son is diagnosed in his adulthood at the age of 23, HBOT (Hyperbaric Oxygen Therapy) oxyhealth.com/hyperbaric_th... can be the best way to treat your son beside behavioral interventions. HBOT can work in molecular level to re-energies the damaged neuron cells of brain with 100% pure oxygen at higher atmospheric pressure. So, at first you must be in touch with a pediatrician who will make the protocol and sessions for your son for the HBOT treatment.

1Hope profile image
1Hope

Hello Diandy, where to start, and where will it end?.

Will reply properly tomorrow. Just for now, I truly understand from my and my sons' experiences. It makes my heart sink every time I read letters like yours. It shouldn't be like this at all.

I don't know if you will see this, as have just realised you wrote your comments some few months ago.

Wishing you well and kind regards

1H

Nadia1p profile image
Nadia1p

Hi there, I realise your post fairly dated now, but I was very curious to learn how things progressed for you and your son - in terms of treatments/therapies for now and with regard to claiming damages for the very negative path your son's life had taken, largely owing to not being diagnosed at an early stage?

My interest stems from having a son, with similarities and still paying the price for his behaviour & actions. My son is now 17, was diagnosed with ADHD when about 8 and not until much later, a formal diagnoses of ASD also (age 15). I had been relieved by the additional diagnosis, believing he would get the help he needed. ............. How very deluded I had been!

I have been challenging LA (Education, Health & Social Care); for over 2 years now and to be honest, no further ahead now than when I started. My son's life just spiralled out of control and his involvement with the CJS and his inability to conform to Court orders (ie: reporting to YOT at set times and days) meaning he is breached for non-conforming and in Jan 2014 he was re sentenced to 4 months Custody at STC. - this was for breach of Youth Rehab Order and caught shoplifting from pound shop, 8 x to leone bars. He left custody in March 2014 and given no resources, activities or ASD specific support and hung out on street every day with poor peer group. He then progressed onto taking legal highs and soon dependant on them. Throughout this time I had been fighting for help/support via LA, YOT and CAMHS etc - but they keep fobbing me off. He has had further involvement with CJS/Police (criminal damage, assault & shoplifting (food) - assault very minor and usually against carers in inappropriate placements, staff with no training or understanding of ASD at all, I had to have him accommodated under S20 - as so difficult to manage alone at home. But I look out for him and continue in a. Airing role 24/7. He was taken back to Court on 30 Dec 2014 for breaching his YOT order again and re-sentenced to 4 months in an STC again! When released, 2 months before 18 birthday - so will be 3 years of battling with LA yet still no specific support or help to hand. I am desperate to get him help/support, but I am burning myself out getting nowhere fast and my son making bad decisions and wrong peer groups, borne out of his inability to speculate or judge others intentions - it's so very sad and I feel so helpless.

Just wondered if you made any progress in all this time and maybe you could share a few tips or advice in my situation.

In any event, I really wish you and your son the very best and hope your son receives the help and intervention, he rightly deserves!

Nadia. :)

You suggest that his life is ruined but by whom and in what way? In law one is required (inter alia) to both prove a duty of care a breach of that duty etc etc.

Ok by all means sue but you will need to find someone who was negligent and then prove they were negligent and then demonstrate and quantify how your son has had his life ruined.

I suggest that no one is to "blame" (we are talking systematic failure ) and you will have little success in obtaining any compensation or indeed finding anyone who will accept your view-point. Diagnosis are working hypothesis. This should not stop you from looking for someone to "blame" but I suggest all that effort albeit well intended, should go on seeking help & support for your son to help him adjust and adapt to a society that has difficulty with difference. Prison is awful for people with ASD.

(Law graduate diagnosed with ASD & ADHD at 42 after being told I had schizophrenia and multiple personality disorders - so I've been there )

AB

diandy profile image
diandy in reply to

Hi there this my first reply on here I hope it might help u in some way. Every person that has Autism/Aspergers can have a Social Care Assessment. To do this you need to contact your Social Services team who will then arrange for the assessment to be done. Dont let them fob you off it is you right to have this done. Once their needs are identified you are entilied to funding for service that are needed. You can also ask for a referral to your local Mental Health team for support from them. There is also the National Autistic Society which is worth joining. I hope that this information will b of help to you.

in reply to diandy

You appear to have replied back to me though...

jh2015 profile image
jh2015

well, I have been diagnosed at 23. I left school and didnt get any GCSES. In fact I was so addicted to video games, I hardly went and no one encouraged me to go. In school I was completely alone and often hid away. I was toughened and attacked for being different, my coccyx was broken through excessive kicks to my backside and thrown knives at on a school bus. My meltdowns weren't understood by my mother, instead I was restrained and beaten by her in the most inappropriate ways. I was housebound and locked inside for 2 years by my parents. I was put into a cell by my own councilor for something I didn't do and taunted by the police for my self harm scars, because I couldn't express emotion. I have been trying to catch up with my life for 5 years because I missed out on an education. I am way further behind for my age and most would had finished University by now, when I haven't even started!! Not only this, my extreme stress of trying not to be 'autistic' on my own has given me a horrible illness called Chronic Fatigue Syndrome/ME, which I have battled for three years. At 23, I have 2 GCSES (finally) and a new diagnosis of autism, after being taunted by the mental health system with medication to treat anxiety but not the core issue.

As someone who has received the rubbish end of the stick too, I am disappointed that your first thought is to claim compensation. It brings question marks above my head! It certainly was not my first thought! I wasn't thinking about 'free money' at someone else's expense. I felt relieved and finally understood. Hopefully, I will be able to get support because for me, its better late than never. Yes?

I understand your disappointment with whats happened but I strongly agree that being diagnosed with autism later is not something to be made money out of. Really. Its ridiculous. How does money come into this? How does money make up time? I also think that the money comes from NHS, which needs as much money as it can get to diagnose other people autism and treat illness.

Nicjeaks profile image
Nicjeaks in reply to jh2015

Hi, I can relate to your story as my daughter was only diagnosed late at aged 18 after a long waiting list and assessment. I hope you have coped ok after your diagnosis and I know it's hard and difficult as I know my daughter struggles with lots of social issues and I have had no help as a parent so my only advice is from looking in the Internet as no support has been offered to me. How do you cope and what do you suggest as a parent that I can help my daughter who is 19 now and going away to university in September away from home who has lots of anxiety and social issues. Many thanks Nicola x

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