Parents of SN teen, how do you cope?

[ChanChanChan]

DD1 is 16 and in the process of an autism assessment, highly likely that she will be diagnosed as such (social anxiety, touch and texture sensitivity, eating disorder).

My question is, how do other parents cope? We are struggling with managing the eating disorder aspect currently, but it's exacerbated by her autism traits - refusal or inability to engage, her fear of lack of control, her absolute fear of not knowing how to respond emotionally/socially.

I'm so frustrated and upset! I feel as though I'm constantly angry and on the verge of tears because she cannot respond "normally" - if an argument starts, because she refuses a meal for example, I might cry and she will just walk away because my being upset "makes her uncomfortable". I feel hurt and rejected.

I know it's not all about me, she is the one struggling to make sense of the world. But as the parent bearing the brunt of parenting a teen with issues, it's very hard to not feel her reactions and behaviour as a smack in the face. Daily. Frequently.

What do you do to stay sane?

Ds is 15 and was diagnosed with autism 6 weeks ago. To be honest we are not coping very well at the moment. There was zero post diagnosis support so we are struggling. He is also in gcse year which is adding more pressure.

Ds has had low mood for about a year but I feel he is now tipping into depression. He also has rigid behaviour and sensory issues around food but his low mood means that sometimes he doesn't really eat at all. He has no friends and pretty much struggles in every social situation.

He has minimal support at school. He gets 20 mins a week to 'talk' to a TA but it's not enough. He struggles to engage with anything. He has had no psychological input or assessment either in or out of school. We are now at a stage where we feel we need to look privately for some support. I asked at his diagnosis appointment and was told there is nothing. I know that he is finding life so difficult but it has taken it's toll on us too. The last year has been incredibly hard and I don't see much changing anytime soon.

I'm sorry I don't really have any advice but you are definitely not alone with this. 💐

Thank you Punxsutawney and I'm sorry too that you and your DS are struggling, it's pretty awful isn't it?

We've gone down the private route for both the autism assessment and psychological help - we were told the waiting list for CAMHS autism assessment is about 2000 kids long, and there's no post-assessment support per se. Although she is receiving help for the eating disorder from CAMHS but it obviously doesn't address the social anxiety and autism related traits and behaviours.

We're very fortunate that work's health insurance will cover some of these costs, but it's just so unfair for all the families who cannot access the ££££ and are solely reliant on the NHS. I feel like this system is letting down an all lot of our young people.

Chan yes it sometimes feel likes it's an endless battle. There always seems to be something to worry about or another problem at school.

I'm glad your Dd is getting some support but you are right camhs and the mental health services are not fit for purpose. It must be hard for you dealing with the eating disorder. I really do feel that those young people who don't get diagnosed with ASD until their teenage years have it really hard. It's no wonder they struggle with their mental health. Ds is still find it hard to accept his diagnosis.

I'm not sure what the answer is as far as how to cope with the parenting side of things though. I know Dh and I have struggled with the process especially the complete lack of support. We have started going to a monthly ASD parents group, it does help talking to others in similar situations as it can feel very lonely at times.

We got a private asd assessment not long ago and we arent coping that well tbh. It has helped us all understand what's going on but it doesn't change the situation.

I don't know if people are still reading this thread but I have a younger teen with ASD. One thing that strikes me, OP, is that I and DD found things easier to deal with once she had a diagnosis, so try to see it as a positive thing. (It wasn't positive for her straight away, but now it helps her to understand herself and helps me to accept her limitations. She has also had specialised therapy which has helped.)

Another thing which occurred to me is that I would be worried about CAMHS treating an eating disorder without dealing with your DD as a young woman with autism (or probably with autism). The causes of her anxiety are not the same as an NT person and cannot be treated in the same way. If you can get a therapist who treats people with autism and eating disorders, that would be much better. From watching DD and other family members with ASD, I would think that your DD will never be rid of the anxiety etc, but she might be able to be taught to cope better by someone who knows what they are doing.

Good luck.

Anne for you. Our private assessment is still in progress but it looks like she is autistic. DD seems pleased (?!) with that, I hope the diagnosis will help her, and us.

Chaotica I think you're right, the CAMHS treatment is purely for the eating disorder, the private psychologist says they won't touch that whilst CAMHS is dealing with it (which they're not, because DD won't engage with them!) It's so disjointed, I don't know where this will lead or whether it will actually do any good. Thank you.

@Chanchanchan the diagnosis has helped dd understand and it has helped the school take me seriously in terms of advocating for her so it has been worth the money.
I think treating the anxiety, lack of cognition and eating issues will take a lot longer to address.