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.
I think Autonomistic has raised a very important point for you to consider - by mentioning PDA. The description of your son's behaviour in the round does seem a very, very good fit.
If at all possible, rather than raising the possibility of PDA with him or other well-meaning helpers, please try to engineer some way to lay it in his path for him to discover and then see if he connects or identifies with it I know that sounds a bit cryptic, but I believe that an adult PDAer will almost certainly reject, out of hand, any direct suggestion that they suffer (and it is definitely insufferable) from this inexplicable and overwhelmingly frustrating "profile" or "condition.". Nihilism seems to come as a standard feature and the ability to maintain an outward illusion of NT is common although this often degrades with age and/or in the presence of stress.
PDA is viewed with extreme skepticism across the board - especially in adults. The cruel dichotomy is that only a person capable of hiding PDA is likely to truly suffer from it. Masters of masking, manipulation and a covert but absolute need for control over their worlds. It is uncomfortably similar to BPD and other problematic Cluster B personalities.
There are no services, community nor acceptance of PDA in adults but I know it to be a desperately lonely and isolating reality. For your son's sake, I do hope it isn't PDA - but if it is, he will have a better chance of happiness if he knows a/the reason for his internal woes.
Advocates for PDA are a strange bunch and the PDA society can offer little more than pamphlets - all of which are squarely aimed at kids. Accordingly, I hesitate to proffer any specific links for further information - it will depend on what your son "connects" with....if he suffers with PDA.
In any event, I am pleased that your son has the support and care that you and your spouse are obviously providing for him.
I wish you all, all the best.