Published on 12, July, 2020
My son is 25 now. Since the age of 8 he would not see professionals or have any discussions about his diagnosed condition or accept any support. We hoped that with age this would get easier. He had friends at school and we encouraged all outdoor pursuits e.g mountain biking and ski ing. He has been good at ‘passing for typical’ but the anxiety that this has caused has meant that behind closed doors things have been really difficult. His sensory issues were off the scale. He now wears earplugs in his room which helps but this has taken years. He has had a few jobs but never copes with the expectations. He has however held down a job now with a man doing tree maintenance (the man is very disorganised and has his own issues which is why I think it has worked for over a year)
All of his friends have moved on in life and Max is now really isolated. He has over the last few years lost interest in all his hobbies and life in general. He barely even answers us when we speak. He expresses that there is no point in life and has health obsessions.
If we try and talk to him he flys off the handle, always has. I used to have a close bond with him but that has gone now. I worry constantly about suicide but I can’t reach him. I am qualified in special needs and run parenting groups as a job but I am at a loss. I also have to finance his life in many areas but know I can’t get any benefits as he would never engage. He got disability when he was younger but once he got to an age where he had to be involved we had to stop any claims.
Our hearts are broken everyday because he is so unhappy. His brother is lovely with him but he won’t even engage with him now either. We are not pushy, love him for who he is and are proud of him but he sees none of this. I communicate with him by text which helps a bit.
He won’t eat with us, come away to our place in the Alps or engage with us in any way. My Dad committed suicide and I found his body. This is a worry for me with Max. What do we do and how can we parent him forever with no support. I don’t k ow how me and my husband have stayed together through all of these years of stress and heartache. Is there any way round financial help when someone has a communication issue?
I have paid fortunes over the years for special needs tutors just to get him through his 3 GCSEs to give him options and also to child psychologists for some help. He was under specialists too at Oxford Radcliffe hospital who said that our home life was unsustainable as he ‘passed for typical’ but in home life he was very complex and severe.in his symptoms. This was all done through video footage as we would not get in the car to attend appointments. Any advice or help would be welcome as there seems to be nothing for ‘kid’ or ‘adults’ like Max.
Hi.
I think he is doing great. If he is able to hold on a job he will be self-sufficient on his own one day. Tree surgoen is a nice job away from people, I would like that too. The worst job for autistic is customer service. The constant miscommunication is draining mentaly. Plus when we get emotional for whatever reason it is more difficult to express ourselves, so that might be behind your son's acceptance to communicate via sms. I know I would like that with everyone. At least about important things, because it gives time to formulate thoughts concisely and make them easier to understand.
He might be more depressed now because it's dawning on him that setting targets and expectation for self won't follow the same way as if he was allistic. We have to take what is given, so any job providing means to survive will do, as long as it isn't mentally draining. Unless he will be lucky to find less ableist workplace and get a job where they would make adjustments for him.
It's quite possible he is happy on his own, and you only get to see his angry face, that's there because of interruption. We get aggravated by interrupting when we are focused on something. Texting allows to communicate between bursts of focus.
That might upset you a bit but there are no benefits for adult autistic. Unless we have additional needs he won't get PIP for being just autistic. As much as it pains me I agree with that, we can function and have a full life on our own alone, as long as we can keep the job.
Thank you.