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Advice needed

NAS86454

Hi, we are still waiting for a diagnosis of autism for our ten year old son. He has been masking for some years and has been treated for mental health issues but over the last year, certain behaviours have become more and more apparent. So we sent off for assessments. 
We recently had a mental health assessment with CAHMS and were surprised when the counsellor came out with the fact that he might be autistic in front of our son. We had still been gently preparing him but she just came out with and he said:”I could be autistic?” And she said yes, but it could also be other things, like adhd etc He was absolutely fine with it and took it really well initially. 
However, since that appointment he just seems to be really struggling (meltdowns, etc) we don’t know whether this is him trying to deal with it, or if he is now able to be who he really is.

CAHMS sent us on our way with no further help. All we have is the internet to help us and we are struggling. Has anyone else experienced this? 

Parents

  • Have you asked your son why he is having meltdowns? I expect it was a stressful appointment and the uncertainty of the outcome is difficult for all of you. My son was diagnosed 16 years ago. There was a six month wait between the first appointment with the pediatrician and the diagnosis assessment. I remember how stressful that waiting time was. 

    Do you have a local National Autistic Society support group? When my son was diagnosed we were given a leaflet with contact details and I called the coordinator. She came to visit me within a week. I don't think you need a diagnosis to ask for help from a support group. We had members in our support group who's children weren't autistic but their conditions were similar or rare so there wasn't any other group for them. You can search for groups on here. For me, other parents were the biggest help because they understood in ways that people that haven't experienced it can't. 

    Nobody will "teach" you about autism but sometimes connecting with other parents can help you navigate the diagnostic process and be a source of emotional support. I can recommend books and other resources. You can message me if you want more information. I know it feels scary to not know how to help your child. It will be alright. If you can get get to the bottom of why your son is having meltdowns and manage his stressors then it will be easier to cope in the coming months. 

    I also expect your son is aware of the transition to secondary school coming up, and also puberty. I found that those major milestones caused my son anxiety - the transition, but also the greater expectations from teachers and feeling different to peers that appear to be more excited than anxious about it all. It can all lead to feelings of overwhelm and "difference". That can be really hard to verbalise as an autistic person. I'm autistic too. I was terrified of growing up when I was 10. I knew about puberty and periods etc., but when it happened to me I didn't connect what I had learned with what was happening to my body. I was just scared and rejected anything to do with growing up, like wearing a bra or having sanitary products in my school bag. Of course me being autistic wasn't even considered then. Just giving you one perspective of being that age for consideration. Of course other factors may be causing your son anxiety. 

  • in reply to This Person (Ottilie)

    Thank you so much for your kind words and offer of help. 
    There doesn’t seem to be any National Autistic Society support group near us. There is one that is for children experiencing emotional and mental health difficulties, which we have attended, and I know we could go back there.

    Ive checked all the links we have been given and there is hardly any groups running in our area that I could take him to, at least at the moment. I will keep looking. 

    you are right, the transition of high school is looming ahead. But at this point I don’t even know if we will get him in a mainstream school. Even though with the right support he would be well capable as academically he is very bright. 

    He is currently on a part time timetable at primary. And we are working to get him to stay at school for full days. We will definitely take him round schools so he can see what it’s like. We’ve already had a meeting with the SENCO at the high school we would like him to go to. Just not sure how everything will pan out really. 

    thanks so much for your help 

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  • in reply to This Person (Ottilie)

    Thank you so much for your kind words and offer of help. 
    There doesn’t seem to be any National Autistic Society support group near us. There is one that is for children experiencing emotional and mental health difficulties, which we have attended, and I know we could go back there.

    Ive checked all the links we have been given and there is hardly any groups running in our area that I could take him to, at least at the moment. I will keep looking. 

    you are right, the transition of high school is looming ahead. But at this point I don’t even know if we will get him in a mainstream school. Even though with the right support he would be well capable as academically he is very bright. 

    He is currently on a part time timetable at primary. And we are working to get him to stay at school for full days. We will definitely take him round schools so he can see what it’s like. We’ve already had a meeting with the SENCO at the high school we would like him to go to. Just not sure how everything will pan out really. 

    thanks so much for your help 

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