I have read Mumsnet for years but this is my first post on this account. I had another account previously and was accused of being a troll, which I don’t want to get into, but I am genuinely not one.
I genuinely don’t know if I’m being ridiculous here and would really appreciate some outside opinions.
DS is 10 and is autistic/ADHD, with quite significant anxiety. He’s in mainstream school and has generally managed, but the last couple of years have been difficult, particularly around school, changes to routine, unfamiliar places and anything he thinks he might get wrong.
About 18 months ago we started seeing a private psychologist/therapist who specialises in neurodivergent children and anxiety. We also have a private OT.
The therapist has been, honestly, transformative for DS. Before we started, he was having meltdowns several times a week, refusing things he had previously enjoyed and becoming increasingly anxious about school. He was sleeping badly too.
There have obviously been ups and downs, but he is now much better at recognising when he’s anxious and talking about it. He’s gone back to doing things he had stopped doing. School have noticed a difference as well.
So I’ve always felt the money has been very well spent.
We have recently had an NHS appointment and this is where I’m struggling.
The NHS professional basically said they thought we may be accommodating DS’s anxiety too much and that some of the private therapy might actually be reinforcing his avoidance.
They suggested that rather than removing or changing things when DS becomes distressed, we should be encouraging him to tolerate more of the anxiety and learn that it is uncomfortable but not dangerous.
I understand the principle. I’m not saying the NHS person was talking complete nonsense.
But some of what they were describing as “accommodation” is exactly what the private therapist has taught us to do.
For example, if DS is extremely anxious about something, we might break it down into smaller steps. We might let him leave a situation and return to it. We might change the environment rather than insisting he pushes through. The private therapist’s view is that once DS is regulated, he’s much more capable of doing the thing.
The NHS view seemed much more along the lines of not allowing anxiety to dictate what he does.
DH is now firmly on the NHS side.
He thinks we should stop the private therapy, or at least pause it, and follow what the NHS professional has recommended.
I’m struggling with this because I don’t see how you can look at the difference in DS over the last 18 months and say the therapy isn’t working.
I know someone will say correlation isn’t causation and obviously I accept that. There have been lots of other changes as well. But I have been the person taking DS to these appointments, doing the work at home and seeing him when things go badly. I have seen what has changed.
And yes, I probably am very protective of him. Maybe I’m just too close to it.
The other complication is that the private therapist has known DS for 18 months. The NHS professional met him for one appointment.
But equally, I don’t want to dismiss NHS advice just because I have more confidence in someone I’ve been paying privately.
Please don’t turn this into a private vs NHS thing. We are incredibly fortunate that we can afford private treatment and I am absolutely aware how fortunate we are. I’m not suggesting private professionals are automatically better.
This is specifically about two professionals giving apparently conflicting advice about the same child.
Would you stop paying for a private therapist you trusted if an NHS professional told you that some of their approach was actually counterproductive?
Or would you ask them to speak to each other and try to work out where the disagreement is?
DH says I’m effectively paying someone to tell me what I want to hear because I don’t like seeing DS distressed. That really upset me, although I can see why he thinks it.
The private therapist isn’t someone who just agrees with me either. She has challenged me plenty of times and has actually told me to stop doing certain things for DS because I’m making him too dependent on me.
The phrase “reinforcing avoidance” has really thrown me because that’s now exactly what I’m worrying I have been doing.
But then I look at DS now compared with 18 months ago and think, how can all of this have been harmful?
And yes, I know someone will mention the cost.
It’s £185 a session and we currently go weekly.
Yes, I know £185 a week is a lot. We can afford it, before anyone asks. I’m not saying everyone should be able to do this.
But I also don’t want to throw away something that seems to be helping simply because we’ve been given an NHS opinion that conflicts with it.
What would you do? Get a second opinion? Ask the private therapist to liaise with the NHS professional? Stop altogether? Or carry on because DS is clearly doing better?
I genuinely don’t know if I’m being ridiculous here.