Autistic/ADHD teen son not leaving his room

mum07Skye

Hi,

I’m struggling with how to support my son. He wasn’t diagnosed until he was 16 when he gradually stopped attending school in S5. He’s cut himself off from all his friends and doesn’t leave his room. He’s recently just turned 17.

He says he’s wants to do things/go places but when the time comes he looks for excuses as to why he can’t do it. He was very sporty and a talented football player but has gradually found social situations, and eventually school too overwhelming and has given up sports and just lies in bed all day.
We have tried lots of different approaches but he’s frustrated with the fact he has nothing to do but when I organise things/support he just can’t do it. I’m not sure whether he understands his diagnosis and doesn’t want to talk about it as it spoils his mood. We ended up getting a private assessment as CAMHS was going to take so long although the downside is there has been no follow up or support.
It’s so hard watching him struggle as he’s desperate to make contact with his friends but his confidence is so low. His personal hygiene is going downhill and he’s spending all his time watching anime videos.

Where do I start? Anyone got any words of wisdom. Thanks 😊

Mum369

I have similar challenges with my daughter , check for a PDA (pathological demand avoidance in ASD) profile there is so much help there, as communication options allow him to maintain his autonomy, may/may not be right but worth a try ,advocate for him and his needs until he is comfortable. I empathise as for a parent it’s constant ,looking for a solution to enable change and connection , the change is see the world how he need you to see it . Shower or bath is an option ,they can choose and maintain control. Demands and rewards didn’t work with my daughter. I hope this helps as each person is so unique .

Mum369

I would also call CAHMS again for support or advice , I hope things get better for you both.

mum07Skye

Thank you your situation sounds so similar as bribes and rewards have never worked. I have considered PDA more recently but he was been to CAMHS twice already and is now been referred again by High School although that took years of persuasion on my part. His previous CAMHS appointments there was no mention of Autism at all it’s been so frustrating as he’s managed to coast along as he’s had so many friends to support him. I think because he’s had friends and been popular at school it’s not until now it’s becoming more obvious. Have you found any good resources on PDA? Thanks 😊

Rachel_Scope

Hi @mum07Skye.

It sounds like a difficult situation for everyone involved. Maybe the idea of going out and doing something is appealing but when it actually comes time to do it, he gets too anxious about it?

Here's some information about PDA from the National Autistic Society https://www.autism.org.uk/advice-and-guidance/topics/behaviour/demand-avoidance#:~:text=It%20has%20been%20characterised%20as,contested%20within%20the%20autism%20community. I hope it helps 😊

Mum369

http://www.sallycatpda.co.uk/ this may help too. Hope it helps.

mum07Skye

Yes that’s it exactly. He makes plans but cannot follow them through. He appears and he is capable but the anxiety takes over.
He hasn’t got an adhd diagnosis yet but unsure if adhd medication would help with the anxiety or not?
He is still young so try not to put a lot of pressure on him but he’s struggling without any routine now he’s left school.

Mum369

during teenage years underpinning issues can be clearly seen due to (hormones) arrival, just continue to support him as you are, there are lots of different topics that can cause withdrawal, so explore with CAHMS they gave me lots of paperwork that’s how I found what resonated, felt like I found the pin in a haystack blindfolded! I was looking for a solution rather than adapting to her needs Initially, it’s a long journey and each child is unique , I hope you find a happy place for you both to enjoy.

Mum369

PDA society.org.uk is also a very helpful resource.

souaaziz29

im not sure where your based, but there is a new organisation caleed mediacymru if your in wales, they have funding and we just had an assesment and was told they could work with him straight away no waiting lists, myh son is 13 and is exactly the same currently not in school as trying to get him into a specialist school. i feel your pain its so frustating and we shouldnt have to fight so much to get our children the help help need! take care here if you ever need a chat !

Amaya_Ringo

I have no idea whether this is helpful or not from an autistic perspective, but two things I learned about dealing with autism and anxiety about doing things (which is basically the fight or flight response, it's not necessarily the same as generalised anxiety, an autistic person can have both). My disclaimer for the following is that I am not a medical person, I am just explaining my experiences, which may or may not help your son.

Doing something new will often overload the brain to a point of fight or flight. This can be made worse by the person feeling obliged to do it, that they are expected to do it, that they will be letting someone down if they don't do it, that something horrible might happen if they do do it (because often ND people see multiple possible outcomes without any of them necessarily being what actually happens). I am also not saying you are putting pressure on your son, he may put pressure on himself thinking he's letting you or others down by not agreeing to/doing these things and thus trapping himself into a cycle.

Wanting to do something and then not being able to do it is frustrating. I have lots of things that I have had to take a step back on or have dealt with weeks of anxiety leading up to when I have managed to do them. But one thing I did learn was that as bad as the anxiety can be leading up to doing something, if I let the anxiety stop me, the next time I became more afraid. And the more I pulled back from doing things, the less I could do. You can't tell your son to do or not do anything. He has to do it himself. But maybe trying to find some kind of outlet for him to talk online to other autistic people his own age about this and how they cope with challenges might be useful to him. I also think it would be helpful for him to talk to someone else professionally if possible about small steps to getting him back active.

To break my habit of not doing things, I used a reward system. When I got my first proper job, I would buy myself a treat for every week of the job I managed to complete. I also found that after a couple of weeks of getting used to a new pattern, the anxiety disappeared.

Being in a fight or flight state is terrifying and very unpleasant. It's absolutely natural he wants to pull back and stay safe and not experience it. At the same time, though, that avoidance can become a pattern, and that can actually be more difficult to deal with in the long run.

People on the spectrum have different tolerance thresholds to those who don't, ours are usually quite low to things like stress and triggers and anxiety. So it helps to start with very small things, like just going for a walk or whatever and then building up to the bigger ones.

Albus_Alumni

That's an excellent insight into the ND mind there @Amaya_Ringo thanks for sharing. I agree that going "low and slow is the way to go" we have to train our minds with small things regularly and build up from there. It's slow going and isn't the most fun, but it's worth it in the end. 😊

WhatThe

AR, really helpful and I'm old and female!

mum07, your son is lucky to have such understanding parents 💕 lack/loss of confidence and dismay upon diagnosis is something I recognise. It took me a long time to understand/accept my new identity and I'm still learning about it.

Autistic shutdown may be what your son is experiencing. There are lots of ASD members on this forum with great insight as above. Keep posting and your thread won't get lost..

WhatThe

it helps to start with very small things, like just going for a walk or whatever and then building up to the bigger ones.

This is the only way I can get to the bigger things on a daily basis. The small tasks are obstacles to the big ones even if they're out of sight.

Mum369

Parental perspective is automatically looking for a solution, daughter has just been seen and after 4 long years introduced to medications for sleep and anxiety broken sleep, lack of activity and selective diet it’s all disregulated. Apparently CAHMS should have prescribed her previously , (after 3 consecutive visits) and here we are ,too soon to see how she is going to respond (fingers and toes crossed ).Positive is the new school all be it short visits, Fabulous staff with the support she needs.

”The explosive child Ross W Greene book is a must for parents,sounds like an energy out kinda book but also implosive kids that withdraw in themselves.Very good insight for parents. Recommended by Neurologist at last visit.

mum07Skye

Hi everyone,

Thanks for your comments. My son has recently reconnected with his friends from school over the last few weeks which is a positive. However they are busy at school and he’s in his room so I think he’s frustrated they are not always available.

He’s very up and down and I think it’s hard as he’s now got into a habit of not pushing himself.

He has an appointment coming up to look at medication for anxiety and possible ADHD assessment/medication. I think also having the opportunity to speak to someone about what’s going on and how he’s feeling will hopefully help.

Having this forum has been so helpful. It’s so hard to see him struggling. I know he’s left school prematurely but it’s difficult to guide him when he’s not ready. Really hoping some medication will help him.

thanks 😊

Mum369

Awesome to hear there is improvement for your son , I hope you continue to improve this is an excellent place for support, I don’t always comment unless it’s relatable. This site has helped me in so many ways.(awesome advice) Good luck and best wishes.

mum07Skye

Hello again,

I was just reaching out again for some more advice.

My son has made some progress since I last posted. He’s on adhd medication that helps with anxiety which is good. He’s going for weekly driving lessons which he’s loving and his driving is really improving. He needs to sit his theory test now and is struggling with this. He did have an appointment before but didn’t go because he was too stressed.

As previously mentioned I think he’s definitely got a pda profile so it’s been hard to navigate. Any offers of help seem to be dismissed so looking for some advice on how to frame support.

Thanks 🙏

Mary_Scope

Hi @mum07Skye

Thank you for your update. It's good to hear your son has made some progress and the medication has helped his anxiety!

Moving from direct instructions to low demand strategies can help people with PDA.
Declarative language can also be really helpful and this is just stating fact or sharing a thought without requiring a response from him. For example maybe instead of asking him if he wants to practice road signs, you say something like I was looking at that app today and I didn’t realize there were so many round signs.

Instead of offering direct help, it can also be helpful to leave resources around for him to discover by accident and on his own terms, these could be a theory book or maybe a leaflet for a driving theory test app etc.

It may also be helpful to frame the driving theory test as a game to beat rather than a test to pass as this is a more novel and less demanding way of looking at it and novelty is a helpful strategy for people with PDA.

There is also the PDA Society which is a good resource for all things PDA!

I wish your son all the luck for his theory test!