undiagnosed and struggling

Hi Everyone

I am new to the page but I am in desperate need of help. My son is 12 and we have been through the process and been thrown out of the other side. The problem is his primary school lied in the MDT meeting we had to try to see if a diagnosis could be reached. This lead to the paediatrician and the ed psych not being able to offer a diagnosis and so discharged us. This means we are once again on our own unable to cope with his outbursts. Don't get me wrong he is a clever and kind boy. But we have periods of anger and stubbornness that we can not control. We have two younger children who he winds up constantly and home life is more like a battle ground and it all depends what kind of day he has had at school. He has just moved to secondary school and I feel we are starting again. We were told we would only get a diagnosis is he exhibited behaviours in two areas ie school and home. But as he copes at school and only displays his frustration at home he can not be on the spectrum. 

I really want to be able to support and help my son, but feel we are on our own and don't know where to go for help and advice. can anyone help me?

Thank you xxx

  • Hi ButtterflyLilly, my friend was in a similar situation. Her 12 year old son is intellectually bright and was managing in school, but coming home and causing chaos (still does), as he was trying to cope with it all. She kept on and on and eventually she got a diagnosis and got some support. He still unwinds in the same way but at least he is getting some support at school now and he has a support worker who takes him out each week and he's now part of an after school activity group who are amazing with him. My friend has to pay for the activities, which leave her only just being able to get manage financially, but she said those few hours a week where she gets a break and the times he's at the activity group, are priceless and he really enjoys the group and going out with the support worker. She is undiagnosed autism and in denial, until I told her about my diagnosis and she comes with me to my support group now and is getting loads of benefit from it. She gets a lot of benefit talking to me because she said that she is starting to understand her son better by listening to my experience of autism and she no longer feels so alone with it all. I really hope you get the support you all need, this fast paced society, with its rigid high expectations (and they say autistic people are rigid in their thinking!!!!) is difficult I think for most of us and having a hidden disability that few people know what to do with, makes it all the more difficult. It's this crazy set up that makes life more difficult for us and I know how difficult it is for families as I know what my family put up with from me. I still upset people and I used to say I hated people when really, I meant the opposite, but could never tell anyone that and when I am getting at people, it's not about them but again, I can't tell them that. It's very complex and yeah, I sincerely hope you get the support so your boy can thrive and some level of peace is restored at home.

  • Thank you. I don't think I phrased his behaviour right. I appreciate it isn't intentional and isn't stubbornness as such. It is just frustrating when he is saying something hurtful to his siblings which upsets them and he can't see why they are upset as in his eyes it is the truth. 

    Most of his anger comes from school or where he feels rules were broken and people not punished.  The world is black and white to him with no grey areas. Rules have to followed at all times or it causes anxiety. Routine change is a nightmare too  

    Thank you for the advice I really appreciate it x

  • If you think it might be autism perhaps try to see it as symptom of a great deal of anxiety rather than stubbornness, and maybe you can find out what's causing that? It may be things or thoughts that would never occur to you, so keep your mind open. I'm just saying because my mum also quite often called me stubborn and it hurted a lot because it wasn't that and it implies naughtiness and intention. I'm not saying that's easy, it's most probably not, but I don't think it's going to do harm, so might be worth trying at least. I hope you'll get some help of some sort, but no matter what that looks like, it's probably not going to make this go away, so you'll still need to find ways to handle it.

  • Hi ,

    You may like to contact our Autism Helpline team who are best suited to help you in this situation. They can provide you with information and advice on your issue. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing increasingly high demand, and you may not reach them straight away.

    Please see the following link for further information:

    http://www.autism.org.uk/services/helplines/main.aspx

    Best wishes,

    Nellie-Mod