Meeting at CAMHS -really nervous

[starfish71]

DS1 (13) dyspraxia, social & communication difficulties was assessed nearly 2 years ago for ASD and didn't quite meet criteria so no dx.

Now in Year 8 and difficulties have really increased, more isolated, not coping with crowds noise etc. School having EP in to assess him later this month.

Have got an appt with Dr at CAMHS this afternoon to update her on what is happening. DH has typed out a list of our concerns to hand to her later (he can't come with me & DS to appt) so hopefully won't have to talk in front of DS too much.

DS is anxious about appt, saying he doesn't want 'another label' and I am so worried about doing the right thing for him. I am sure the Dr isn't suddenly going to say 'oh I got it wrong last time your son has ASD' but it is so hard and I want him to have all the support he can to get through secondary school and achieve all he is capable of.

School asked me to contact CAMHS to get this appointment but what I realistically expect from it?

Sorry just rambling, but any advice would be good, thanks

It might be worth considering what CAMHS could help ds access if anything. Perhaps ds would benefit from help with understanding/ communicating with others, (salts support social skills too) or help with sensory needs from the OT. It sounds like school needs advice on how to best support your ds.
We had a situation when ds was in reception but undiagnosed when the school would not allow the autism support people to visit him because he did not (at that time although it was expected) have a dx on the spectrum. It might be the school need advice on how to help.

Thank you magso, have just got back and feel bit worn out and stressed!

Dr read what we had typed up, insisted on talking about everything with DS, ok I do get this but even when I asked to speak to her alone at end she refused. DS is only 13 and I know his views count but I am still the parent.

DS was very adamant he does not need to go and see friends at weekends, holidays etc, told her firmly that there is nothing wrong with this and it is just the way he is. He likes being at home and that is that.

To be far Dr really could see he has significant difficulties and said he can do the ADOS again as obviously things have worsened. DS refused this, also refused to have an appt with the clinic male nurse who he has seen before. I look at the Dr and she gives me a pained look and says that she can understand why I and school are worried but unless DS agrees to further ADOS or appts then she can't do anything.

I must admit I did get a bit upset at this point and just said 'look I understand that DS's views have to be taken into account, I am his mother and surely there must be a way around this?' Apparently not.

So she has agreed to write to school explaining her findings from today and arranged a meeting with us next month, before she retires.

Arrgh! feel frustrated and just want to move on and get DS support he clearly needs.

Anyone else has experience like this?

kind of similar in that at the diagnosis appointment the dr would not speak to us alone gave ds the option to be there when we wanted to ask her stuff alone which meant he interrupted, got mad at us and agitated and then we could not ask much questions as it was upsetting him and he is only 12 but she said as he is 12 he should have the option to be involved, is really annoying as she told us he is as mature as a 9 yr old so I'm thinkin why are you treating him like a teenager then, your post resonates with me and it is bloody maddening
.the same thing happened at a school meeting where they gave him the right to be there he got agitated started to swear and try and get up and sit down and had to be taken out by his classroom assistant and he butts in. I feel like shouting he has aspergers, this is too much for him he will interuppt and swear ! the meeting won't go well if he is there. the meeting is becasue he has a.s.d yet they are treatig them like mini adults and its nto to there benefit, so i dont get it at all

Thanks Jennylee, it is so frustrating. Yes they have to have their views heard and respected but it is a huge responsibility to put on children to decide if they want further appointments or even a diagnosis!

DS has only just turned 13, he may be a bright boy but is very young for his age in lots of ways, doesn't help that Dr is a bit drippy (well that how she comes across), not good that you have experienced similar Jennylee but at least I am not alone.

Glad it has helped I have a follow up next week and a school meeting, I hope to be able to speak to them without ds as he just gets upset

Hope your follow up & school meeting goes well next week, hope you get to talk to them alone too. You would think they would understand that you don't want to discuss everything with your child there wouldn't you? x