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What is even the point of diagnosis??!!!

ThePinkPixie

My son is 15, coming up 16, and was diagnosed with ASD and ADHD in October. 

i've always known he's on the autistic spectrum but he's slipped through the net quite spectacularly, and I feel totally let down by the school and the system.  Anyways- apart from the school panicking he's going to fail his GCSEs (probably purely because of his league tables!) and throwing extra maths etc at him, very little has changed. I don't feel there is any support or understanding or anyone to turn to with regard to him leaving school and becoming 'independent' which he really isn't. 

I actually feel I've been punished for coping too well, and I'm pretty terrified about him going to college and getting there in one piece. And now I have to prove he needs help!!! Is the diagnosis itself not enough proof that he MAY actually need support???? how do I PROVE that my son won't go anywhere without his mum??!! Has no friends?! Is adamant he isn't going to college??!! And what's worse is his brother is 15 months younger and Mr Sociable, never home, really confident, and like a huge spotlight pointing at his brothers difficulties. I feel more alone than when I knew I was right pre diagnosis :( 

Parents

  • Hi All,

     The trouble with CAHM's is that they are severely under resourced and the waiting times are huge. When a child; or even an adult for that matter, has a mental health issue, it needs addressing in a timely manner, not months down the line. I also know this from bitter personal experience. If you are able to finance outside input then do consider it. I couldn't for myself and it did add up to a protracted recovery in my personal experience.

    Subsequently, I've found an excellent councellor whom I trust and this time around I've found I've made a more meaningful recovery from my depression, but obviously we are all individual and heal at different rates.

    Both my boys are extremely high functioning, but have pretty poor executive function, which makes everyday living quite difficult. One also has stress related illness (Severe Migraines,) which totally incapacitate him and add up to a significant amount of time off college. The other has a dignosed sleep disorder and night terrors. This means I've had to centre my life around their care and work part time from home to ensure i'm their for them both. (no employer would employ me with such unpredictable demands.)

    I'm affraid those with high functioning Autism are fairly commonly acknowledged as slipping through the net and most of any support I've encountered is largely parent driven.

    If money was no object, I'd love to set up a centre to support such cases, but that's just a pipe dream I guess.

    One of my sons did an ASDAN course on independance whilst on day release from School, but struggled greatly with managing his own finances. I hunted high and low for tailored support for this, but with little success. By the time my local Autism hub got around to organising courses, they were on a similar premise to ASDAN, not targeted support on one subject, so I opted to teach him myself using an NAS resource. It's felt like the blind leading the blind most of the time, but we are getting there.

    Don't feel bad about off-loading here. Sadly, your predicament is one frequently featured on the forum. Their are many willing to help or just even lend a listening ear, when things get fraught.

    It's up to you if you decided to apply for DLA, but again you will need to fill in forms and probably support it with a case statement of his needs. We have found it invaluable to ensure my sons safety. (One lad was assaulted on public transport, and struggles traveling due to extreme anxiety.) This expenditure is huge, but now he has access to college, which may otherwise have been beyond our means.

    If I can help with any info; I will try, Just ask. Can't help much with form filling though I'm afraid, as that is my true achillies heel. When I was looking at statement writing I got help from IPSEA. A Lawyer helped me draft the statement for Tribunal, I'm not sure if the do the same for FE etc, but it maybe worth asking.

    The key to statement writing, I was told, was to pick out the key terms and statements in the documents supplied by proffessionals in support of your outline. Hope thats of help.

    Take care,

    Coogybear

     

Reply

  • Hi All,

     The trouble with CAHM's is that they are severely under resourced and the waiting times are huge. When a child; or even an adult for that matter, has a mental health issue, it needs addressing in a timely manner, not months down the line. I also know this from bitter personal experience. If you are able to finance outside input then do consider it. I couldn't for myself and it did add up to a protracted recovery in my personal experience.

    Subsequently, I've found an excellent councellor whom I trust and this time around I've found I've made a more meaningful recovery from my depression, but obviously we are all individual and heal at different rates.

    Both my boys are extremely high functioning, but have pretty poor executive function, which makes everyday living quite difficult. One also has stress related illness (Severe Migraines,) which totally incapacitate him and add up to a significant amount of time off college. The other has a dignosed sleep disorder and night terrors. This means I've had to centre my life around their care and work part time from home to ensure i'm their for them both. (no employer would employ me with such unpredictable demands.)

    I'm affraid those with high functioning Autism are fairly commonly acknowledged as slipping through the net and most of any support I've encountered is largely parent driven.

    If money was no object, I'd love to set up a centre to support such cases, but that's just a pipe dream I guess.

    One of my sons did an ASDAN course on independance whilst on day release from School, but struggled greatly with managing his own finances. I hunted high and low for tailored support for this, but with little success. By the time my local Autism hub got around to organising courses, they were on a similar premise to ASDAN, not targeted support on one subject, so I opted to teach him myself using an NAS resource. It's felt like the blind leading the blind most of the time, but we are getting there.

    Don't feel bad about off-loading here. Sadly, your predicament is one frequently featured on the forum. Their are many willing to help or just even lend a listening ear, when things get fraught.

    It's up to you if you decided to apply for DLA, but again you will need to fill in forms and probably support it with a case statement of his needs. We have found it invaluable to ensure my sons safety. (One lad was assaulted on public transport, and struggles traveling due to extreme anxiety.) This expenditure is huge, but now he has access to college, which may otherwise have been beyond our means.

    If I can help with any info; I will try, Just ask. Can't help much with form filling though I'm afraid, as that is my true achillies heel. When I was looking at statement writing I got help from IPSEA. A Lawyer helped me draft the statement for Tribunal, I'm not sure if the do the same for FE etc, but it maybe worth asking.

    The key to statement writing, I was told, was to pick out the key terms and statements in the documents supplied by proffessionals in support of your outline. Hope thats of help.

    Take care,

    Coogybear

     

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