Published on 12, July, 2020
Hi, I’m a newbie to this forum and I desperately look for help for my 17yo son and my family.
My son has been suffering from OCD for last 3 years. He is most likely to have ASD and was referred for assessment last year but he doesn't agree to have this assessment. He had CBT two years ago and it helped a lot with some aspects of the disease. Last summer we were back to CAMHS as he decided to starve himself and stopped eating. I must say that he is still angry with me for these therapies and consider it to be carried out against his will.
In the current situation of lock down, my son's condition deteriorated a lot. He is disconnected from the world doing rituals all the time until exhaustion like a broken machine. Unfortunately, my husband got involved in the rituals as he wanted to take some stress away from him and help our son but this turned against him. Now my husband has to do all the rituals and my son is absolutely dependant on him. My husband has to put him to bed, take him to toilet, put his shoes, walk him to the park etc and all this takes almost 24 hours as my son doesn't need much sleep. His dinner last for almost 8-10 hours and at best we go to bed 3-4am, at worst 6.30am.
The problem is that my son doesn't agree for therapy and medication. We are in contact with CAMHS but they cant do anything unless he agrees.
We don't have any family life anymore, we are exhausted and tired. We are family in crisis and need help asap to be able to further support our son. We need help with how to manage this situation to improve it and not to make it worse, we need somebody to work with us towards convincing our son to start therapy. We feel abandoned and isolated with our problem. I'm sure there must be some help like family therapy, I just don't know where to turn to find it. CAMHS seems to be useless in a current scenario.
I hope there are people here who maybe have been through something similar and could suggest where to look for help and how to convince our son to go for therapy. Thank you.
Hello, sorry to read your story, I can understand you are loving parents stretched to the limit.
I am thinking a bit about your son's sense of identity, as he is 17.
When you are suggesting therapy for your son, make sure that he knows you are not trying to cure his autism, but rather the effects of it seen in OCD and hyper anxiety. The eating refusal sounds like a control issue if he thinks you want to take his autism away, or possibly something connected with his age, when many young people are constantly hearing or seeing messages that they will become adults or start to be independent from their parents and he is not ready for that stage of growing up.
The autism is part of his identity and as weird as it sounds, he needs to keep being autistic as it's how he sees the world and it has many benefits such as ability to map information and carry out intense activities. Try to make sure that you are not trying to change his identity, stop him being autistic or anything like that. The therapist needs to make that very clear too. I resisted therapy when i was younger ( I didn't know I was autistic) because I didn't trust them and I thought they wanted to change me into another person and I didn't like that other person.
It sounds cruel asking you to find positives if you are sleep deprived - sorry - but try to make sure the autistic personality is talked about in a balanced way, where positives and negatives are made obvious in your family and he does not feel like an outcast or the Different One. It's particularly hard when you are a teenager to feel a crisis of identity.
I hope that makes some sense.