Hi, my name is Jeanie1, 12 year old son needs assessment, but how? — Scope | Disability forum
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Hi, my name is Jeanie1, 12 year old son needs assessment, but how?

Jeanie1 Member Posts: 1 Listener
My son is 12 years old and has had difficulties for a very long time, which was highlighted to be noticed when he was 7 and I had to change his schools as I received a call from his school 20 minutes after school finished asking if I knew where he was; the head teacher refused to discuss the situation with me at the time so I took him out of school. In his new school he would not interact with other children, refused to go to class, and even tried climbing over the school fence to get out. I would carry him kicking and screaming to the car and into school, he would be restrained and taken into the sensory room. At his previous school he would cry and not want to be in school or after school club if one particular boy was not going to be there. He refuses to wear denim, coats, or shorts at any time of year and says he is never hot or cold. He does not eat meat (though he will eat mince) says he does not like the texture. He has no friends says he doesn't like people and doesn't want friends. He has not been into a classroom for 4 years (except 1 occasion) and has not been into a school since March 2016. We have had CAMHS (who have just closed his case for the 3rd time in the same number of years), Step2, Education Psychologist, Children's Services; he just refuses to engage with anybody, wont attend appointments, stays in his bedroom mostly, except the odd good days where he comes down and chats, and on even rarer occasions he has been to the shops with me in the evening, went to the tennis courts a couple of times (though the last time threw his racket and kicked the ball as he couldn't serve) professionals has visited the house he stays in his room and wont talk to them. His personal hygiene was non existent but since researching management techniques I have found using PDA techniques has improved this. When I used to ask/tell/nag him to get a bath/brush his teeth he would go 2-3 weeks without a bath/shower etc, now though it still need improvement but he is now getting bathed/showered etc 3 times a week of his own volition. My issue is that as he will not engage with professionals 'them people' as he calls them, or attend appointments I cant get an assessment completed; although 2 years ago he had some form of assessment which stated he had severe anxiety, demonstrating traits of ASD, and having difficulty attending school and being in social situations. How do we get a full assessment if he wont attend appointments or engage? When I asked for work for him school said they will not accept this letter as it was done 2 years ago and aimed at his primary school where he was managing to attend at the time (although never in a classroom and not necessarily in the building)


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,673 Disability Gamechanger
    Hi @Jeanie1 welcome to the community, it sounds like you are having such a tough time.

    @VioletFenn @IndependentSupportServices @RebeccaMHadvisor @EducationalPsychologist do any of you have any ideas?
    Senior online community officer
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
    The user and all related content has been deleted.
  • VioletFenn
    VioletFenn Member Posts: 124 Pioneering
    Hi @Jeanie1

    Oh gosh, what a stressful time you're having. You are doing incredibly well under the circumstances, I have to say. 

    Can I ask why CAMHS have closed his case - is it simply due to failing to attend appointments? They really should be more helpful if they know what problems you have even getting him anywhere. 

    It would be well worth speaking to your local ASD support group as they are more likely to know what local organisations might be able to help. Google 'autism support' and the name of the county you live in and that should find them for you - if you have no luck let me know where you are and I'll try to find out from my end. 

    Another google search - and this will probably be the most useful - 'sendiass' plus the county you're in. This is the independent advice and support centre for SEN and disabilities for each area in the country - it was through them (in Shropshire) that I finally got help for my own son. They really are set up to help parents in exactly your situation, so do try them. 

    Keep in touch and please let us know how you get on. 

    ASD advisor, Scope

  • IndependentSupportServices
    IndependentSupportServices Member Posts: 54 Courageous
    Hi @Jeanie1

    I second the advice to get in touch with SENDIASS, they can support you with these issues and can guide you in the right direction when it feels like you hit a brick wall. They will also be able to tell you if things aren't going right and give you the confidence to challenge and move forward. 

    If you have any difficulty in finding your SENDIASS, email me at [email protected] and I will help you to do this.
  • helpneeded
    helpneeded Member Posts: 3 Listener
    Whilst not as bad, my son show a lot of the same behaviors as yours

    re the tennis - I had the exact same thing, never again have I attempted to play any kind of sport/activity with him he can fail. We always do non competitive things (or ones I can 'lose').

    Does he enjoy computers? I have found one of the best ways I can communicate with my son is via a computer in game chat, I take the laptop upstairs hes on the PC downstairs.

    My son is extremely fussy with eating and wearing clothes. I know he has PSD but don't see the need of a diagnosed for it. These things I let go I have to chose which battles to 'fight' and these are the least of our problems so what if he eats the same meal each night and takes his clothes off as soon as he gets in the house, I have bigger issues that need addressing.

    Personal hygiene is also a big battle in this house (along with accident issues/problems) thanks for the tips re PDA I will look into that. I did feel terribly guilty one day when I was getting frustrated with my son as he was refusing to get in the shower when he said to me the water hitting his body feels like needles pricking him.

    My son is also very difficult to get to medical appointments, its takes a big bribe to get him there, once there he will not speak to them or even be in the same room when I talk to them, I have to take someone with me who can be in the waiting room with him. I made the decision not to allow anyone to come to the home as his home is his safe haven I think if I let someone in he does not want to see this might make it worse.

    I wish you both well I have some understanding of some of your issues. I would keep on at the medical profession, you need to keep pushing the fact your son will not go to the assessments means he needs more help not less.

    Good Luck

  • andie50
    andie50 Member Posts: 2 Listener
    Ask him what he wants to happen, how he would handle the situation you're both in. My daughter was the same, nightmare and heart breaking for her. This was the only way she would see psychiatrist, she chose herself who she wanted to see and they had a brilliant relationship for 6 years until she was 18. I'm not sure if any of this will help, I wish you well and hope something good comes out of this, for both of you xx


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